AUTISM SPECTRUM NEWS TM YOUR TRUSTED SOURCE OF SCIENCE-BASED AUTISM EDUCATION, SUMMER 2014 INFORMATION, ADVOCACY, AND COMMUNITY RESOURCES VOL. 7 NO. 1 Autism and Mental Health Services

Medication Treatment of Co-Occurring Illness in Autism Spectrum Disorders

By Russell H. Tobe, MD distressing and impairing symptoms relat- Director, Outpatient Research Dept. ed to comorbidity is often necessary. This Nathan Kline Institute for article will review the most common disor- Psychiatric Research ders associated with ASDs, rare but severe disorders, and their treatments.

ne of my first mentors in psy- Medical Comorbidity chiatry said early in my career: “when a disorder impacts an or- Depending upon the population, the gan in the body, other problems rate of identifiable genetic disorders in Oand challenges often follow suit within that ASD can vary but is typically in the range same organ.” This is apparent in many ar- of 10-20% (Shishido, 2014). These rates eas of medicine: a leg deformity related to have and will continue to increase as a prior growth problem may lead to joint technology advances to permit rapid and erosion and pain of that same leg or the first cost-effective pathways to identify new al- heart attack weakens the heart in a manner leles that play a role in ASD. Indeed, the such that the second is often more severe. rate of identifiable genetic contributions to This rule applies to the brain. Certain types ASD pathophysiology has prompted sev- of brain infections or tumors increase risk eral organizations, including the American for seizures which can further damage Academy of Child and Adolescent Psychi- neurons and interrupt their function. Ac- atry, to recommend genetics evaluation for cordingly, it is intuitive that the neuronal disorders that may damage the brain, such ditions may be evident, ASDs can share all children diagnosed with an ASD (Volk- differences that are in place for individuals as certain infections, environmental expo- common risk factors and neurobiology mar, 2014). More commonly associated with Autism Spectrum Disorders (ASDs) sures, or seizures, also impart added risk with other psychiatric disorders. Given genetic disorders associated with ASDs may also elevate risk for the development for development of ASD. Finally, though these factors, co-occurring illness (comor- of other psychiatric disorders. Conversely, no causal relationship between the con- bidity) with ASD is frequent; treatment of see Co-Occurring on page 14

Anger and Autism Spectrum Disorders: A Clinician’s Perspective

By Grazyna Kusmierska, PhD typical triggers of anger, such as feeling learn how to control his or her outward ex- reactions, and behavioral scripts. Accord- Psychologist provoked or intentionally mistreated by pressions of anger and better manage frus- ing to Berkowitz and Harmon-Jones’s Premier HealthCare someone, they often struggle with commu- tration. However, this can be particularly model (2004), all those components are nication and processing problems, senso- challenging when a person with ASD is not interconnected: Activation of one of them ry overload, transition difficulties, social able to make use of therapy sessions, for ex- affects the other parts. For example, phys- sychology defines anger as a com- rejection, difficulty meeting expectations ample, because he or she does not have suf- ical discomfort could increase physiolog- plex psychological phenomenon, a in school, at work, and in their families ficient verbal and processing abilities or re- ical arousal and evoke angry feelings and syndrome consisting of emotions, (Gaus, 2007), all contributing to frustration fuses to participate in sessions. Even when a thoughts, which may or may not be related related thoughts, physiological and angry feelings. A recent study by Sam- person is able and willing to verbalize his or to the discomfort. On the other hand, de- Preactions, and behavioral scripts or action son, Huber, and Gross (2012) indicates that her experiences and work with a therapist on crease in activation of one of the compo- tendencies that define the way in which the people with Asperger’s syndrome and high coping strategies, there is a limit as to how nents affects the other parts as well. For person acts when angry (e.g. Berkowitz & functioning autism report higher level of much can be done by focusing on the indi- example, relaxation, which brings down Harmon-Jones, 2004; Deffenbacher, 1999; negative affect (defined as feeling nervous vidual. People typically experience anger in the physiological arousal typical for anger Kassinove & Sukhodolsky, 1995). Anger and upset) and more difficulty identifying, a situational context, mostly in relation to experience, reduces the intensity of angry is commonly and frequently experienced describing, and regulating their emotions others (Buckley, Winkel, & Leary, 2004). In feelings and decreases angry thoughts. (Averill, 1983), and it has an adaptive val- than typically developed individuals do. my experience, conceptualizing anger as re- The interconnectedness of anger compo- ue: It signifies lack of satisfaction with the Other studies (e.g. Fitzgerald & Bellgrove, lated to an issue that exists in a person’s en- nents has a great impact on the therapist’s current state of affairs and could mobilize 2006; Hill, Berthoz, & Frith, 2004; Kon- vironment, and work with a system in which ability to help people with ASD to manage a person to take steps to change this situa- stantareas & Stewart, 2006) and clinical the person with ASD functions, in addition anger. The therapist has a choice to work tion. It is the poor regulation of anger that experiences confirm these results. to individual or group counseling, brings on physiological reactions, thoughts, feel- often leads to problematic outcomes, could Clinicians often see individuals with ASD faster and more lasting results. ings, or behavioral scripts, and she can tai- cause an individual’s and family’s distress, referred for counseling to improve frustra- lor work on coping strategies to the needs and calls for treatment. tion tolerance and anger management. The Work on Coping Strategies of a person that he/she serves. It is difficult People with autism spectrum disorders referral sources usually expect that through to treat people who cannot verbalize their (ASD) have more reasons than the av- participation in individual counseling or an As previously stated, anger consists of

erage person to feel angry. In addition to anger management group, the person will emotions, related thoughts, physiological see Anger on page 18

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Cindy Alterson, PhD, BCBA, Principal and Program Director Chairman Devereux Millwood Learning Center Jorge R. Petit, MD, President Joel Bregman, MD, Medical Director and Director of Psychiatry Quality Healthcare Solutions Group The Center for Autism Vice-Chairman Joseph D. Buxbaum, PhD, Director Barry B. Perlman, MD, Director, Department of Psychiatry Seaver and New York Autism Center of Excellence Saint Joseph’s Medical Center Mount Sinai School of Medicine Secretary Susan M. Cortilet-Jones, MS, LMHC Life Skills and College Coaching Specialist/Consultant Peg Moran, LMSW Discovering Your World Treasurer Stephen E. Freeman, LCSW Debra Pantin, MSW, Associate Executive Director The Freeman Group VIP Community Services Lynda Geller, PhD, Founder Members of the Board Spectrum Services, A Cooperative of Independent Practices and Organizations, New York, NY Peter D. Beitchman, DSW, LMSW, Chief Executive Officer The Bridge Ami Klin, PhD, Director Constance Y. Brown, MPA, Vice President, Community & Government Relations Marcus Autism Center Institute for Community Living Harold S. Koplewicz, MD, President Carmen Collado, LCSW, Assistant Executive Director Child Mind Institute Jewish Board of Family & Children’s Services

Cecelia M. McCarton, MD, Founder and Executive Director Jonathan P. Edwards, LMSW, Training Specialist, Parachute NYC The McCarton Foundation NYC Dept. of Health and Mental Hygiene The McCarton School (for Autism) Alan Eskenazi, MA, CPHQ, CASAC, Senior Associate Executive Director, Department of Psychiatry Woodhull Hospital Judith R. Omidvaran Parent Advocate, New York Mary Hanrahan, LCSW, Government Relations Specialist New York Presbyterian Hospital Theresa Pirraglia, Co-Founder and Board Member FECA, The Foundation for Empowering Citizens with Autism Joseph Krasnansky, LCSW, Vice President and Chief Program Officer Lower Eastside Service Center John C. Pomeroy, MD, Founding Director Cody Center for Autism and Developmental Disabilities Judith R. Omidvaran Stony Brook University Medical Center Parent Advocate, New York Theresa Pirraglia, Co-Founder and Board Member Patricia Rowan, LMSW, Consultant and Advocate FECA, The Foundation for Empowering Citizens with Autism Kid’s Connection Janet Z. Segal, LCSW, Executive Vice President Pat Schissel, LMSW, Executive Director Four Winds Hospital Asperger Syndrome and High Functioning Autism Association Alan Trager, LCSW, Chief Executive Officer Alison Singer, President Westchester Jewish Community Services Autism Science Foundation Kimberly Williams, LMSW, Vice President The Center for Policy, Advocacy, and Education Richard Swierat, Executive Director Mental Health Association of New York City ARC of Westchester Dianne Zager, PhD Fred Volkmar, MD, Director Michael C. Koffler Professor in Autism, Yale Child Study Center Dyson College of Arts and Sciences, Pace University

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Autism and Mental Health Services

1 Medication Treatment of Co-Occurring Illness in ASD 15 The Need for a Behavioral Medicine Approach for Children 1 Anger and Autism Spectrum Disorders: A Clinician’s Perspective 16 SAP and Autism at Work 4 Adults with Autism May a Have High Burden of Health Problems 17 When Diagnosis Isn’t the Whole Answer - A Diagnostic Perspective 4 Autism Science Foundation Announces 2014 Grant Recipients 18 Resolving Psychosocial Stages for Adults That Commit Criminal Acts 6 It Takes Brains to Solve Autism 19 Social Problem Solving: Best Practices for Youth with ASD 6 Autism Science Foundation Hosts Autism TED-Style Talks 20 Unique Collaboration for Youth with ASD 8 Autism and Mental Health Issues: Challenges for School Teams 20 Dianne Zager Joins MHNE Board 9 Advocating for a Student-Centered Approach in Special Education 21 Technology and Autism: The Backbone of Effective Collaboration 10 Psychiatric Hospitalization and ASD 22 Bringing Autism Insurance Mandates into Compliance with the ACA 11 Treating the Adolescent with ASD: The Quest To Establish Selfhood 22 Autism Paradox and the Broken (Special) Education System 12 A Parent-Supported Evidence-Based Social Skills Intervention 23 Autism and Bipolar Disorder 13 Video Games and Kids – How Much is Too Much? 24 The Regular Tiger: A Father Deals With His Son’s Obsessions 14 Autism Treatment: Addressing the Changes and Challenges 25 Remember the Kayak - A Mom’s View

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Adults with Autism May a Have High Burden of Health Problems

By Jessica Wright Hidden Adults SFARI.org Most of the men in Piven’s group have markedly low intelligence quotients: 40 per- dults with autism may suffer cent have IQs under 35 and about 60 percent from various health problems, have IQs below 50. This is probably be- ranging from psychiatric con- cause to be diagnosed with autism decades ditions to motor symptoms that ago - when there was much less awareness Aresemble Parkinson’s disease, according to about the disorder - they would have had to two studies presented Thursday at the 2014 have severe symptoms, says Piven. International Meeting for Autism Research One of the men in the study was among in Atlanta. the first group of 11 people to be diagnosed Some of the conditions may stem from by Leo Kanner in 1943. Some of the oth- people with autism feeling like outsid- ers received a diagnosis for the first time ers in society, says Lisa Croen, director during the course of the study and had in- of the Autism Research Program at Kai- stead been diagnosed with disorders such ser Permanente, an integrated healthcare as schizophrenia or bipolar disorder. “One delivery system in California. Croen led of the big stories here is that there are peo- one of the studies, which documents the ple out there who are misdiagnosed. We health status of more than 2,000 adults just can’t find them,” Piven says. with autism. A 2012 study found, for example, that about “From our experience, inclusion and Lisa Croen, PhD Joseph Piven, MD 10 percent of adult patients in a state psychiat- feeling part of society really does impact ric hospital have undiagnosed autism.1 on health status,” says Croen. “It’s very adults with autism in the field, so we have they found 20 men with autism who were Of the 20 men in Piven’s group, 17 look important to include adults with autism in virtually no knowledge base,” says Joseph over 50 years old. older than their age, with a stooped pos- all sections of society.” Piven, professor of psychiatry at the Uni- “I think the main finding is how hard it ture, and about half have at least one symp- The findings are also of concern given versity of North Carolina at Chapel Hill, was for Joe Piven’s group to find people,” tom associated with Parkinson’s disease, the rising numbers of children diagnosed who presented the second study. says Catherine Lord, director of the Cen- including tremors, slow movement and with autism, the researchers say. They Piven and his colleagues pursued a ter for Autism and the Developing Brain at rigid gait. About one-quarter of the group highlight how little is known about adults “boots-on-the-ground approach,” sending New York-Presbyterian Hospital. Lord has has two or more of these symptoms. with autism, many of whom may be misdi- queries to nearly 14,000 households and followed children with autism over long One of the men was already undergoing agnosed with other conditions. contacting several health agencies in North periods of time, but was not involved in “There is almost no literature on older Carolina. After three years of searching, either new study. see Adults on page 27

Autism Science Foundation Announces 2014 Grant Recipients

By The Autism Science Foundation said Dr. Matthew State, Chair of the ASF Dr. Katherine Kuhl-Meltzoff Predoctoral Fellowships Scientific Advisory Board and Chair- Stavropoulos/Dr. James McPartland: man of the Psychiatry Department at the Yale University Alexandra Bey/Dr. Yong-hui Jiang: he Autism Science Foundation, a University of California, San Francisco. Duke University not-for-profit organization dedi- “These projects show great potential to The Effects of Oxytocin on Social Learning cated to funding autism research, move the field forward.” in Individuals with ASD The Role of Shank3 in Neocortex Versus has announced the recipients of its Striatum and the Pathophysiology of Autism T2014 annual pre and post-doctoral fellow- The following projects were selected for Goal: Understand who may or may not ships as well as the recipients of its first 2014 funding: benefit from oxytocin treatment Goal: Determine whether and how specific undergraduate summer research grants. brain regions control specific ASD-related Postdoctoral Fellowships Dr. Julia Parish-Morris/Dr. Robert Schultz: behaviors Pre and Postdoctoral Research Grants University of Pennsylvania Dr. Boaz Barak/Dr. Guoping Feng: Nick Goeden/Dr. Alexandre Bonnin: Five postdoctoral and four predoctoral Massachusetts Institute of Technology Developing Automated Algorithms to As- University of Southern California grants will be awarded to student/mentor sess Linguistic Variation in Individuals teams conducting research in autism in- Characterizing and Manipulating the So- with Autism The Impact of Maternal Inflammation terventions, etiology, treatment targets, cial Reward Dysfunction in a Novel Mouse During Pregnancy on Placental Trypto- biomarkers, language development and Model for Autism Goal: Design effective, personalized inter- phan Metabolism, and the Downstream animal models. “The autism community ventions for pragmatic language deficits Consequences on Fetal Brain Development has demanded more research to understand Goal: Provide treatment-facilitating insight what is causing autism and to develop bet- into the pathophysiology of autism Dr. Aarthi Padmanabhan/ Goal: Understand the impact of prenatal ter treatments” said ASF president Alison Dr. Vinod Menon: inflammation and infection on fetal brain Singer. “We are proud to be able to increase Dr. Shweta Ghai/Dr. Gordon Ramsey: Stanford University circuits and ASD development our research funding in response to this na- Emory University, Marcus Center tional health crisis and we are especially Social Motivations and Striatal Circuit Erin Li/Dr. Alexander Kolevzon: grateful to all our donors and volunteers Identifying Biomarkers for Early Diagno- Development in Children and Adolescents Seaver Autism Center, who have come together to support autism sis of Prosody Disorder in ASD using Elec- with Autism Icahn School of Medicine at Mt. Sinai research and make these grants possible.” troglottography “ASF attracts outstanding applicants Goal: Determine windows of brain plas- Mapping the Neurobehavioral Phenotype in across the board, representing a broad Goal: Improve vocal and language devel- ticity during which intervention may be range of perspectives on autism science” opment in children with ASD especially successful see Grant Recipients on page 29 AUTISM SPECTRUM NEWS ~ SUMMER 2014 www.mhnews-autism.org PAGE 5 PAGE 6 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SUMMER 2014

It Takes Brains to Solve Autism

By The Autism Science Foundation been committed to providing the rare and precious resource of brain tissue to many highly qualified scientists,” said Autism he Simons Foundation, Autism Speaks chief science officer Robert Ring. Speaks, the MIND Institute and “The launch of Autism BrainNet enables the Autism Science Founda- us to continue this mission and expand the tion have announced the launch number of available collection sites, and Tof the Autism BrainNet, and encourage represents an unprecedented investment individuals with autism and their fami- ensuring that researchers have access to lies to register to become tissue donors the brain tissue they need to answer the big at www.takesbrains.org. Autism BrainNet questions about autism.” is a consortium of academic sites funded Educating families affected by autism to collect, store and distribute brain tissue is essential to growing Autism BrainNet’s resources necessary for researchers to un- tissue resources quickly. It Takes Brains, derstand the underlying neurobiology and Autism BrainNet’s outreach program, en- genetics of autism. courages families affected by the disorder The pace of autism research has been to register with Autism BrainNet in the significantly hindered by a severe shortage event that brain tissue donation is someday of human brain tissue. Important discover- relevant to their family. Registrants will re- ies have already been made thanks to gen- ceive updates about the ongoing progress erous donations of brain tissue from indi- of Autism BrainNet. viduals with autism. This type of research “My 16-year-old son, Grayson, was a could lead to a better understanding of the David G. Amaral, PhD, and Robert H. Ring, PhD brain tissue donor,” says Autism BrainNet disorder, its treatments and its causes. To family participant Valerie Hund of Liver- date, research has shown that the brains of Dallas. Additional sites worldwide are ex- causes of autism spectrum disorder,” Ama- more, California. “I would encourage any people with autism seem to be structural- pected to join in the future. Each site will ral says. “This research takes us important family to register to be donors. Although ly different — possessing different num- adhere to standard protocols for clinical steps closer to effective treatments that will we could not have anticipated losing our bers and sizes of neurons — and appear data and brain acquisition, preparation, lessen disability for affected individuals.” son to a seizure, for us, in that moment, to show increased inflammation compared storage and distribution to researchers. “Human brain structure and function we gave back and did something that felt with the brains of typically developing in- Autism Speaks’ Autism Tissue Program is the key to understanding behavior — right — not even knowing that brain tissue dividuals. In addition, shared changes in (ATP) will transition to Autism BrainNet. and identifying differences in the brains is so in demand. So now Grayson can be a gene expression have been identified in Resources from the ATP will continue to of individuals with autism is essential for pioneer in helping make this next quantum the brains of people with autism. Howev- be made available through Harvard Uni- advancing our understanding of autistic leap in research. Out of something bad, er, none of these findings have received versity. Communication with ATP donor behaviors,” says Marta Benedetti, senior something good came about.” adequate replication, in part due to a lack families will continue through Autism scientist at the Simons Foundation Autism “Most people think brain tissue is in- of adequate samples. BrainNet, and ATP registrants will be Research Initiative. “Autism BrainNet will cluded when you register as an organ do- The following institutions will join as added to the Autism BrainNet database to provide the material needed to identify nor, but it’s not,” says Alison Singer, pres- inaugural members of Autism BrainNet receive updates on the new program and and understand these differences, and will ident of the Autism Science Foundation. and will be collection and storage sites: news about general brain research. greatly advance our understanding of and “Every family raising a child with autism Harvard University/Beth Israel Deaconess Dr. David Amaral of the University of the ability to treat autism. Autism BrainNet needs to think about registering to donate Medical Center in Boston, Icahn School of California, Davis MIND Institute will serve will also allow researchers to replicate pre- brain tissue in case of a tragedy. Brain tis- Medicine at Mount Sinai in New York City, as director of Autism BrainNet. “Studies vious findings using new, better-character- sue research is the best hope we have for the University of California, Davis MIND on brain tissue represent the best way for ized and larger sets of tissue.” understanding what causes autism and de- Institute in Sacramento, and the University researchers to gain a deeper understand- “Since it was launched in 1998, the Au- veloping new and better treatments for in- of Texas Southwestern Medical School in ing of the genetic, cellular and molecular tism Speaks Autism Tissue Program has dividuals with autism.”

Autism Science Foundation Hosts Autism Community’s First TED-Style Talks

By Meredith Gilmer as one community. He noted that it is cru- Community Relations Associate cial for everyone to work together in order Autism Science Foundation to advance the science and to improve the lives of those with autism. Dr. David Amaral of the University of n April 10, 2014, the Autism California, Davis and the Director of Au- Science Foundation celebrated tism BrainNet also touched on the need for its fifth anniversary by hosting community support. Dr. Amaral present- a Day of Learning and an Eve- ed Why It Takes Brains to Solve Autism, Oning of Celebration at the Yale Club of informing the crowd that fewer than 150 New York City. For the Day of Learning, physical brains have ever been studied in ASF presented the autism community’s the history of autism research. In order to first TED-Style Talks, which were given advance the science, researchers depend by nine experts in the autism field. At this on brain tissue donations from the commu- sold-out event, over 250 scientists, parents, nity. Anyone who is interested in learning individuals with autism, and other stake- more about the crucial gift of brain tissue holders gathered to listen and learn about donation can visit www.TakesBrains.org. autism spectrum disorders. Dr. David Amaral speaks to over 250 attendees about Another speaker who added his own per- TED-Style Talks are short, powerful pre- "Why It Takes Brains to Solve Autism" at the spective to the day’s proceedings was Paul sentations that usually only last about 15 Morris, a 26-year-old adult with high-func- minutes. They are intended to share infor- Autism Science Foundation's TED-Style Talks tioning autism. Mr. Morris shared Growing mation in a concise and inspiring way, of- Up with Autism, his personal account of ten encouraging the audience to take action The topics presented at ASF’s TED- Institute of Mental Health. Dr. Insel gave a some of the struggles and triumphs he has after the presentation is over. This format Style Talks touched on a variety of subjects talk entitled, From Four Kingdoms to One experienced. He inspired the crowd as he allowed for this event’s attendants to hear that are relevant to individuals in the au- Community for Autism, presenting autism spoke, inviting them into his life’s story. from many experts in the autism field in tism community. The day’s first presenter as an illness, an injury, an insight, and an just one afternoon. was Dr. Tom Insel, Director of the National identity, and calling on the audience to act see TED-Style Talks on page 31 AUTISM SPECTRUM NEWS ~ SUMMER 2014 www.mhnews-autism.org PAGE 7 PAGE 8 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SUMMER 2014

Autism and Comorbid Mental Health Issues: Challenges and Issues for School Teams

By Vanessa Tucker, PhD, BCBA-D Eligibility a team could qualify the student under the Professor of Special Education IDEA category of MD (Multiple Disabili- Pacific Lutheran University The public school system is federally ties). Ultimately the team should select the mandated to serve any child with a dis- category for eligibility that represents the ability between the ages of 3 to 21 pro- best fit and look toward creating written hildren and youth with ASD (Au- vided that the disability (or disabilities) plans and specially designed instruction tism Spectrum Disorder) repre- present(s) such an impact that accommo- that address the multiple and varied needs sent a variable and growing pop- dations alone cannot adequately ensure of each child. The category opens the door ulation in the K-12 school system progress in the general education curricu- to services and ensures the continued en- Cwho may be served under IDEA (The In- lum. School systems operate under IDEA titlements. The paperwork and plans that dividuals with Disabilities Education Act: and determine an area of eligibility based follow are the true guides to creating a 2004). ASD is, according to the DSM V upon best fit when evaluating a child for package of services that address all needs (Diagnostic and Statistical Manual of Men- special education. Teams can and do strug- related to ASD and any impairment areas tal Disorders, 5th Ed.; American Psychiatric gle when more than one disorder is iden- that create an adverse educational impact. Association, 2013) a neurological disor- tified. Eligibility categories serve multiple der characterized by deficits, social-com- purposes for educational planning and ser- Comorbidities: Addressing Needs munication and the presence of restrictive vice delivery including identification of Through Collaboration and Training and repetitive patterns of behavior. It is a prevalence, better definitions for research difficult disorder to neatly classify as indi- purposes and deployment of resources. Comorbidities with ASDs in children viduals are highly heterogeneous in their The child with more than one diagnosis and youth bring up a number of important symptoms, delays and strengths. Schools may be the “square peg in the round hole” issues for school teams during the educa- may identify children to receive services Vanessa Tucker, PhD, BCBA-D when it comes to identification and eligi- tional planning and intervention phases under IDEA in the eligibility category of bility for services. For example, a young and suggest the need for greater collabo- Autism at any age provided that there is disorder and others (Hanson, E., Cerban, adult may present with diagnoses of ASD ration and training. School teams typically evidence of an adverse educational impact. B.M., Caccomo, L.M., Bacic, J. & Chan, and Bipolar Disorder. In this case there are approach each child from a strength and The diagnosis of ASD is often not the only E. 2013; Manion, Leader & Healy, 2014; ). two possible IDEA eligibility categories needs-based perspective related to the dis- issue the family and school team has to The presence of one or more comorbidities to choose from: ASD and ED (Emotion- abilities creating the adverse educational contend with. A large percentage of chil- is quite common in this population (Man- al Disturbance). Teams in this case must impact. All interventions should be de- dren, youth and adults with ASD present ion et al., 2014; Manion & Leader, 2014) grapple with identifying the category that signed to increase functional capacity to with one or more other disorders, termed and presents a number of issues worthy of best fits the student and move beyond the cope with the social and academic demands “comorbidity,” including sleep disorders, discussion for educational teams. The focus label toward adequately addressing ad- of school and are tied to the underlying seizures, tic disorders, ADHD, gastroin- of this particular article is on ASDs with co- verse educational impact and academic/ testinal disorders, obsessive compulsive morbidities of mental health disorders. behavioral needs in the IEP. In some cases see Challenges on page 26

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Advocating for a Student-Centered Approach in Special Education

By Vicki Ofmani, MEd, LDT-C for the child as an individual. It has been process-driven. The teacher remains as a Supervisor/SLE Coordinator said that from the seeds of trust integrity skilled facilitator throughout the process. The Forum School blooms. The teacher must see the strengths The learner’s role changes from that of be- students possess and facilitate their growth, ing a passive recipient or empty receptacle acknowledging the partnership between into which the instructor deposits informa- utism Spectrum Disorder is on student and teacher which can only exist tion into that of an active learner engaged the rise. Autism Spectrum Dis- within an environment of trust. in the procedure. order is on the rise? While pon- Keeping the balancing act is not easy, yet Shifting the focus places the teacher dering over information found it is necessary to foster the independence along side the students during the learning Aon the National Institute of Mental Health and generalization of learned behaviors development. Children construct knowl- website (www.nimh.nih.gov), one cannot and academic skills. The basis of human- edge through repetitive gathering and in- help but fluctuate between statement and istic design is the individual. Therefore, tegrating of information. General skills of question. The latest edition of the diagnos- looking at each child with their individual inquiry, communication, critical thinking, tic manual (DSM-5) now includes Asperg- characteristics, needs, tendencies, expec- and problem solving are addressed and ad- er’s Syndrome under the ASD umbrella, tations, strengths and successes is central. vanced. We all know how important it is broadening the category ever further. In Since every child with ASD is different, no to read and write and understand the use addition, greater awareness is, thankfully, single education plan should be mass pro- of mathematics (and a calculator). Those bringing with it earlier diagnosis. We all duced. We see this when we look at a defi- soft skills, however, are as, if not more, look at genetics, vaccines, environmental cit model; we should also be open to this important as the 3 Rs (reading, writing factors – none of which has lead us to a when looking at attributes. Teachers have and arithmetic). Rather than answers be- cause for the disorder which is now esti- heard the phrases and have used the class- ing “right” or “wrong,” learners are ex- mated to touch approximately 1out of ev- room design of both student and teacher posed to the idea that they can learn from ery 88 of the children we love (National centered instruction. Special Education their errors and, thus are able to generate Autism Association, 2014). screams out to be focused on the learner. better questions. In addition, generally, Perhaps it is human nature to search for This really should be more than a matter of student-centered instruction is considered a cause so that we may point to and blame Vicki Ofmani, MEd, LDT-C semantics. The focus must be on what the interdisciplinary in nature of collaboration, something in particular. However, through child is doing in the classroom rather than cooperation and mutual support. years of teaching and caring the truth seems Health Impaired, or Specific Learning focusing on what the instructor is doing or Formative assessment is one effective to be that some things really don’t matter… Disability – finding how to teach the child covering in the paradigm. way a teacher can be clear about the in- and a few things matter very much. is what comes first. The challenge comes Teaching styles and teaching strate- tended learning goals for a lesson (www. The label or classification matters little from the balance that must be struck. The gies obviously affect student learning. education.com/reference/article/forma- unless you are looking for government teacher must be demanding yet patient; Please consider the shift which may oc- tive-and-summative-assessment/). This funding. Autistic, Communication Im- energetic but calm; firm, sure and always cur when instruction changes from being means focusing on what students will paired, Multiple Disabilities, Emotionally flexible. The difference is striking. And, teacher-centered and content-driven to Disturbed, Cognitively Impaired, Other paramount to all else, there must be respect becoming learner-centered and learning see Student-Centered on page 26 PAGE 10 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SUMMER 2014

Psychiatric Hospitalization and ASD

By Sophia Francis-Stewart, MD hospitalization will affect their ability to Katherine Cody, PsyD participate in a successful discharge plan. and Natalia Appenzeller, PhD Some people with ASD/DD experience Fay J. Lindner Center for Autism hospitalization as desirable because of the and Developmental Disabilities increased attention and structured group ac- tivities. Hospitalization can create a sense of belonging and comfort which can result dmission to a psychiatric inpa- in reinforcement of the behaviors that re- tient unit can have varying out- sulted in the hospitalization. But other pa- comes for a patient. The success tients can experience the hospitalization in of the admission is determined a negative manner or as a “punishment.” Aby the patient’s ability to function after They could be resentful of family mem- discharge. During the course of treatment, bers/caregivers who facilitated the hos- it is important to prepare the patient for pitalization, and become uncooperative/ life after hospitalization. All members of unmotivated during their stay, prolonging the team, including family members, res- discharge and adversely affecting what idential staff, and the outpatient team in happens following discharge. Regardless, conjunction with the patient himself play the ultimate goal should be a collaborative a significant role in determining whether process of all parties involved for success- or not the transition will be successful. For ful treatment and discharge. patients with ASD/DD there are some key Successful hospitalizations should al- components that, if in place at each junc- ways include the following: ture of this process, will help increase the • Medical Triggers (medication chang- rically. Accordingly, only those who have likelihood of this success. es; other medical concerns) severe psychiatric symptoms are admitted. • Establishing clear treatment plans Coordination of treatment between the with concrete goals At Admission Prevention of these triggers in the future patient’s outpatient team and the hospital can help to decrease the likelihood of read- treatment team is critical to success, allow- • Implementing motivational systems It is important to have an understanding mission to an inpatient unit in the future. In ing for ongoing monitoring of the patient’s and positive reinforcement for ex- of the circumstances that resulted in the hos- recent years the criteria for admission have treatment and progress and taking into con- pected behaviors and progress toward pitalization including (but not limited to): become much more stringent; only patients sideration the patient’s strengths and needs. treatment goals that have psychiatric symptoms that meet • Behavioral Triggers specific criteria as outlined by the DSM-5, During Hospitalization • Establishing a positive sense of prog- or whose functioning has deteriorated to a ress for the individual to facilitate the • Environmental Triggers (changes in point that they pose a threat to themselves Patients intellectual, emotional and psy- environment) or others, are typically admitted psychiat- chiatric functioning and feelings about the see Hospitalization on page 34 AUTISM SPECTRUM NEWS ~ SUMMER 2014 www.mhnews-autism.org PAGE 11

Treating the Adolescent with ASD: The Quest To Establish Selfhood

By Shuli Sandler, PsyD ent from the parents. The storminess of that When children with Asperger’s become Clinical Psychologist time period is really a reflection of the ado- adolescents this can prove to be quite a Spectrum Services lescent’s need to discover this sense of self. difficult time. On the one hand, they may Individuals with Asperger’s Syndrome struggle with the developmental pull to typically have average to above-average “grow up,” to develop a sense of auton- n our society, adolescence is thought IQ’s with deficits in social reciprocity, per- omy and self-definition that is age appro- of as a time of self-discovery and iden- spective taking, and executive functioning, priate with their peer group. At the same tity formation. It is a time when the in- and they often lack independence in daily time, because of their difficulties with dividual is not quite a child anymore, living skills. As such the individual with socialization, executive functioning, and Ibut is certainly not an adult; it is the tran- Asperger’s is often living with significant daily living challenges, they are forced to sitionary period between the two. During discrepancies between various areas of remain dependent on their parents, at least the span of roughly seven to ten years, or strength and weakness. For example, an 11 for a longer time than their neurotypical in some cases longer, the child grows up year old with Asperger’s Syndrome may peers. This conflict creates yet another to become a man or woman. The famous present with verbal abilities that are equiv- discrepancy for them, the age-appropriate developmental psychologist, Erik Erikson, alent to those of a 17-year-old and social developmental desire for independence summarized various developmental stages skills that are equivalent to a 3-year-old with the reality of the need for continued across the lifespan. According to him, the (Volkmar et. al 2000). It can be quite con- dependence. This pull can feel irrecon- conflict during that stage of life is “identi- fusing and complicated living with such a cilable and leave the adolescent with As- ty versus role confusion.” His idea is that large gap, and put the individual with As- perger’s and the parents feeling hopeless, the adolescent is trying to navigate his or perger’s in a difficult situation. It’s very depressed, anxious, and guilty. her place in the world, try and fit in in a hard to be gifted in certain areas, while How do we support these adolescents unique and personal way, with the ultimate challenged in others. As such, the child in their quest for independence while ac- goal of forming a stable sense of self over with Asperger’s typically relies on parents, knowledging the reality of the fact that they time. While some of Erikson’s ideas have caregivers, and therapists to help them do require continued dependence on par- been challenged more recently, I think the compensate for various areas of social and ents, teachers, and therapists, which may goal of adolescence reflecting the process emotional weaknesses. In my practice, I not be the case for their neurotypical peers? of identity formation rings true for most, Shuli Sandler, PsyD often encounter parents (typically moth- Below are some suggestions and guidelines if not all, adolescents to some degree or ers) who have spent years serving as their that I have found to be helpful in working another. In seeking to establish this unique olescence can be thought of as a potentially child’s “blackberry” to compensate for with this age group and their parents. identity, which can be an ambitious under- stormy time where one’s relationships with their child’s deficits in executive function- taking, the adolescent may reject beliefs or parents and caregivers may be quite dif- ing. Children with Asperger’s often rely on Acknowledge the problem - Understanding ideas that were previously accepted (Ham- ficult as the adolescent searches to define their parents out of necessity to help them that the storminess, moodiness, anger, and man & Henricks, 2005). In addition, he or and understand him or herself. He or she navigate these complicated, confusing, and confusion are actually a normal part of she may actively challenge parental figures may find the need to pull away to establish even alien social aspects of the world that who previously served as role models. Ad- an identity that may be similar to or differ- can feel virtually incomprehensible. see Selfhood on page 24 PAGE 12 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SUMMER 2014

PEERS: A Parent-Supported Evidence-Based Social Skills Intervention for Adolescents with ASD

By Karina G. Campos, PsyD This appears to especially be the case for of understanding of social cues” (Laugeson Clinical Psychologist those individuals with higher functioning et al., 2012, p. 1025). That is, these young NYU Child Study Center and cognitive abilities who often have a people will have: trouble engaging in recip- better understanding of their inabilities rocal conversation, including taking turns (Grynszpan et al., 2011; Tse, Strulovitch, and flexibly changing topics (Klin & Volk- artin is a 14 year-old boy Tagalakis, Meng & Fombonne, 2007). mar, 2003); problems with understanding who has recently starting ex- The capacity to establish lasting friend- and expressing emotions and empathizing pressing increased levels of ships emerges as critical in the middle and with others’ feelings (Krasney, Williams, anxiety, particularly about high school years when young people in- Provencal & Ozonoff, 2003); and a strained Mhis impending transition into high school creasingly rely on their peers, rather than understanding and ability to pick up on starting this fall. Martin was diagnosed their families, for social support, validation, nonverbal and subtler forms of communica- with ASD as a younger child and finding and feedback concerning their burgeon- tion—for example, changes in voice inflec- a place among his peers has always been ing identities (Mitchell, Regehr, Reaume tions and gesturing (Weiss & Harris, 2001). an obstacle. Although he has one friend he & Feldman, 2010). Typically developing As children enter adolescence and the occasionally spends time with—mainly by children usually learn via natural exposure complexity of social communication ex- playing video games and exchanging ideas and observation, as well as from specific pands with the pressure to fit in and be about shared interests—he often complains feedback from their parents, teachers and accepted, deficits in the aforementioned that he does not have many friends at school peers about what constitutes appropriate areas tend to become even more pro- and that he is not very much liked by his social skills and good friendship behavior. nounced in these young individuals with peers. Kids at school have previously called Since children with ASD have difficul- ASD and to those in contact with them him “weird” and have not readily invited ty naturally picking on these skills from (Tse et al., 2007). Unsurprisingly, perhaps, him into their groups or cliques. Distressed their daily environment and interactions, this commonly results in peer rejection and that he will continue to feel this way in high they appear to require much more direct, subsequent feelings of loneliness, depres- school, Martin is beginning to shut down Karina G. Campos, PsyD structured and frequent feedback regarding sion, anxiety, and isolation (Bauminger & and avoid many of the daily school social their social behavior (Laugeson, Frankel, Kasari, 2000). As adolescents progress into interactions. His parents are concerned that not need socialization and friendships Mogil & Dillon, 2009). Thus, making and adulthood, these social complications can his ostracization will persist and, as a result, (Sicile-Kira & Sicile-Kira, 2012). People sustaining friendships often continue to permeate other important social areas of he will feel increasingly down and insecure with ASD are indeed more socially iso- evolve as common areas of struggle for life, including the ability to navigate col- about his relationships and identity. lated, but it is often not out of their own young people with ASD (Laugeson, Fran- lege, dating and seeking and maintaining A misconception exists whereby, be- personal doing or desire. They will fre- kel, Gantman, Dillon & Mogil, 2012). employment (Mitchell et al., 2010). Given cause individuals with Autism Spectrum quently express wanting to befriend others, Specific social deficits in persons with that social difficulties continue on into Disorder (ASD) are challenged in the area and can experience intense disappointment ASD often involve “poor social communi- of social development and skills, they do when they are having difficulty doing so. cation, impaired social cognition and a lack see PEERS on page 28

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Video Games and Kids – How Much is Too Much?

By Paul Weigle, MD for this are complex, but the primary effect lowed to play. Playing video games before Psychiatrist and Medical Staff President appears to be that excessive video game bed also significantly increases the amount Natchaug Hospital habits displace activities with academic of time it takes a child to fall asleep, partly value and those that teach patience and because youth often resist turning the game delayed gratification, such as reading for off when instructed, but also because the lthough video games have been enjoyment or devoting adequate time to activity is mentally stimulating and pro- a part of American culture for homework. In my psychiatric practice, I motes wakefulness. I frequently evaluate over 40 years, their influence in often care for youth who are able to per- children who habitually play handheld vid- the lives of youth has grown ex- form well on their schoolwork at school, eo games (on a phone, tablet or Nintendo Aponentially in recent years, particularly for where video games are not a distraction. DS) in bed at night, leading to severe sleep those on the Autism Spectrum. The Kaiser However when these youth are at home problems which can only be reversed after Family Survey found that, between 2000 they are so motivated to play video games parents confiscate these devices at bedtime. and 2010, the average amount of time that that they consistently fail to complete In the wake of an increasing number of 8-18 year olds spend playing video games homework. This is particularly evident in school shootings such as the tragedy at quadrupled to an average of one hour per the case of children who performed well Sandy Hook, there is a significant concern day for girls and two hours per day for academically until they were given a com- about the effects violent video games play boys. Those whose parents did not set rules puter or video game console, after which on vulnerable youth. Research reassures on how much they are allowed to play vid- their grades quickly deteriorated. Some us that most youth who play violent vid- eo games spend twice as much time doing research evidence indicates that playing eo games do not go on to act out violently. so. Evidence confirms that children on the video games excessively over months may However, younger, impressionable, or un- Autism Spectrum spend twice as much weaken a child’s academic skills, particu- sympathetic children who play violent vid- time playing video games as their typically larly the ability to concentrate. eo games excessively are at risk to develop developing peers. Video games have come Paul Weigle, MD Video gaming can also interfere with a more aggressive thoughts and behavior to dominate the free time of many autis- child’s sleep habits, particularly if played problems over time. Aggressive youth tend tic children and teens, leading parents and However, a growing body of scientific re- in a child’s bedroom or before bed. Access to prefer violent video games and play health professionals to wonder about their search confirms what parents and mental to video games in the bedroom in strong- more, which can lead to more aggressive long-term effects. There are undoubted- health professionals have long suspected; ly associated with inadequate sleep, which thoughts in a harmful cycle. ly some advantages to youth engaging in that too much gaming can be a serious det- can in turn lead to problems with learning, Can video games be addictive? Although this hobby. When kids are busy playing riment to our children’s health. memory, depression, and hyperactivity. most children and teens play video games video games, they are typically content, For example, numerous studies indicate Children on the Autism Spectrum are par- in moderation, some habitually spend ex- physically safe, and don’t appear to require a negative correlation between time spent ticularly vulnerable to this effect, and are cessive time playing, causing significant much parental attention. Video games can playing video games and academic suc- more likely to have behavioral problems problems in their lives. Video game addic- enhance eye-hand coordination and visu- cess. In other words, the more kids play on if they have a video game console in their tion is not yet an official psychiatric al attentions skills, and educational vid- their Xbox or the Nintendo, the less likely bedroom, especially those who have no eo games can be effective teaching tools. they are to earn good grades. The reasons consistent rules on how much they are al- see Video Games on page 30 PAGE 14 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SUMMER 2014

Autism Treatment: Addressing the Changes and Challenges

By Christopher Dennis, MD, MBA, FAPA treatment and the family budget as a whole. latest update of the Diagnostic and Statis- Chief Medical Officer, Commercial Division Even caregivers insecure financial situ- tical Manual of Mental Disorders, DSM- ValueOptions, Inc. ations encounter enormous psychological 5, by rolling these individual disorders demands. Families of children with autism into a single diagnosis called autism spec- experience significant levels of stress and trum disorder (ASD). This modification is his past March, it became clearer exhaustion, incur more parental medical meant to provide patients with a more con- than ever that the scope of autism issues and expenses (Rich, 2011), and have sistent—and in some cases, an earlier— is changing. With new estimates higher rates of divorce. diagnosis. As the ASD diagnosis includes from the Centers for Disease Con- Autism has remained a challenge for original significant diagnostic criteria, Ttrol and Prevention (CDC) identifying that families largely because the quality of au- children identified with an autism disorder 1 in 68 children in the U.S. are now affect- tism assessment and diagnosis is extremely before the introduction of DSM-5 will not ed by autism, a nationwide conversation variable and often poor, while the quality need to be reevaluated unless there is a de- ignited on how to address the pervasive- of autism treatment is often non-specific termined clinical need. ness of a disorder with no verified cause and ineffective. So how are we working to An ASD diagnosis now requires deficits and no known cure. change this? in two core domains: social communica- Of course, this same conversation has tion and interaction (a lack of interest in long been going on within the autism com- Modifications in Autism Diagnosis peers, for instance, or difficulty displaying munity, where prevalence exists not as nonverbal communication cues such as fa- statistics, but as people—more specifical- One of the major concerns of autism cial expressions); and restricted, repetitive ly, our children, our students and our pa- treatment has been in ensuring treatment is behavior patterns (such as developing an tients. Though autism is the fastest-grow- accurate from the onset, which means ex- inflexible routine, or responding adverse- ing developmental disability in the U.S., amining our historical diagnosis of autism ly to certain materials or sounds). As au- it currently receives about 5 percent of the and adapting it to present day needs. tism-related symptoms vary in intensity research funding of many less prevalent Previously, patients would have re- from person to person, ASD is classified childhood diseases (Autism Speaks, n.d.). ceived an individual autism-related diag- into three levels of severity based on the The simple logistical demands of obtain- Christopher Dennis, MD, MBA, FAPA nosis—autistic disorder, Asperger’s disor- amount of required support. ing autism treatment are astounding, par- der, childhood disintegrative disorder or Additionally, DSM-5 also introduced the ticularly for working parents: more than report financial burdens related to autism pervasive developmental disorder—but diagnosis of social pragmatic communi- 50 percent of caregivers report the need to health care costs—in fact, working moth- researchers found these diagnoses were cation disorder, which is given to children reduce or stop work entirely, while more ers forfeit anywhere from $3,000 to $5,000 inconsistently interpreted and applied. For who experience difficulties in social com- than 25 percent report spending more than in lost productivity each year (Rich, 2011). some patients, this resulted in a less clear munication and interactions, but who do not 10 hours a week to provide or coordinate When you consider that autism costs fami- understanding of the individual case, and display the restricted and repetitive behavior special care for their child (Kogan, Strick- lies an annual average of $60,000 (Autism ultimately, a less effective treatment plan. patterns associated with autism. While not land, Blumberg, Singh, Perrin & van Dyck, Speaks, n.d.), any reduction in income can The American Psychiatric Association 2008). Another 33 percent of caregivers be devastating to both the continuation of (APA) addressed these concerns with the see Treatment on page 32

Co-Occurring from page 1 2. Individuals with ASD may have more “classic” ADHD symptoms such as sus- challenges in managing medication tained attention in the context of ASD with include tuberous sclerosis, fragile X, neu- side effects. This may be related to stimulant medications may be as effective rofibromatosis, Angelman’s, Prader Willi, difficulty in communicating those side as treatment in individuals without ASD Williams syndrome, Down’s Syndrome, effects as well as individual differenc- (Kylkylo, 2012). However, rates of med- and 22q11 syndromes, including Velocar- es in medication metabolism ication discontinuation due to side effects diofacial and DiGeorge Syndrome. Cur- are higher relative to treatment of ADHD rently, biological interventions directed at 3. Individuals with ASD may respond to in individuals without ASD (RUPP, 2005). some of these identified genetic mutations low doses of medicine quite nicely Other medication interventions such as ato- are underway. The other advantage of ge- moxetine have also been shown to be help- netic testing in ASD includes evaluating 4. Individuals with ASD who respond ful in treatment of ADHD symptoms in the risk for other medical conditions associat- to low doses of medicine do not nec- context of ASD (Harferterkamp, 2012). ed with that same genetic disorder as well essarily respond to higher doses and as guidance for family members consid- may even do worse Obsessive-Compulsive Disorder ering having children. While it is beyond the scope of this article to review associ- Attention-Deficit/Hyperactivity Disorder Rates of Obsessive-Compulsive Dis- ated medical conditions for each of these order (OCD) have been reported to be as disorders, and others not listed, it is clear Attention-Deficit/Hyperactivity Disor- high as 37% in ASD (Leyfer, 2006). Giv- that early identification of these disorders der (ADHD) is commonly comorbid with en that restricted and repetitive patterns of permits rapid evaluation and treatment of ASD. Attentional symptoms and hyperac- behavior (such as inflexible adherence to potentially serious conditions that may be tivity were also amongst the first symp- routine or fixated interests) are one of the associated with these alleles, including sei- toms described (Kanner, 1943). Interest- two major symptom domains in DSM-5 zures, cardiovascular defects, and ophthal- ingly, until recently, the DSM did permit ASD diagnostic criteria, clarifying a diag- mologic disease, amongst others. Russell H. Tobe, MD individuals with ASD to receive a diagno- nosis of OCD in this context can be chal- sis of Attention-Deficit/Hyperactivity Dis- lenging. This is particularly challenging Psychiatric Comorbidity with ASD. That brings a clear advantage in order (ADHD) (APA, 2000; APA, 2013). if language limitations impair the ability planning treatment of impairing symptoms This was largely related to a still ongoing of an individual to outline intrusive and Given the broad inter-individual dif- associated with common ASD comorbid- debate about whether ADHD and ASD irrational thoughts that are common in ferences with respect to the numerous ities. However, it also brings with it the are truly separate conditions or a part of a OCD. Symptoms of OCD (such as intru- domains in the diagnosis of Autism Spec- possibility for polypharmacy. Generally I separate subgroup of disorders that share sive thoughts of contamination leading trum Disorder, it continues to be challeng- apply four rules of thumb when approach- both features. Despite this debate, rates of to repetitive hand-washing routines) can ing in drawing a clear boundary between ing medication treatment of co-occurring ADHD symptoms in individuals with ASD occur within the context of ASD and may symptoms that exist as the direct result of illness in ASD: are high; it is estimated that 20-50% of be responsive to medication intervention. ASD and those stemming from other neu- individuals with ASD can independently However, repetitive and restrictive be- ropsychiatric disorders. This is not at all 1. Individuals with ASD are more like- meet ADHD diagnostic criteria (depending haviors are significantly more common in surprising as most of these conditions are ly to respond to pharmacological and upon which specific ASD population is be- ASD and the effectiveness of medications syndromes with some overlapping symp- other interventions when co-occur- ing studied) (Hanson 2013). in their treatment is less clear. Prior studies toms – not at all atypical for medical con- ring symptoms form a constellation While joint attention (one’s ability to en- of selective serotonin reuptake inhibitors ditions. This is reflected in the new DSM-5 that closely approximates the standard gage in a shared area of focus with another targeting these repetitive and restrictive criteria which now permit for the diagnos- diagnostic criteria for a disorder for individual) is best managed with behavioral ing of other psychiatric disorders, along which the medications are indicated. and educational intervention, treatment of see Co-Occurring on page 27 AUTISM SPECTRUM NEWS ~ SUMMER 2014 www.mhnews-autism.org PAGE 15

Addressing the Need for a Behavioral Medicine Approach for Children with ASD

By Michael J. Cameron, PhD, BCBA-D the child and his or her family. The family After being informed of what was a be- Chief Clinical Officer leaves feeling frustrated and hopeless, and havior problem by the medical community, Pacific Child and Family Associates the patient is no better off. his mother referred him to my clinical team and we used a “scatter plot” to identify the Towards a Behavioral Medicine Approach commonalities in his emesis incidents. We hen a child with autism took a computational behavioral medicine spectrum disorder enters a In contrast to the medical treatment that approach and systematically excluded and doctor’s office, are they be- many children on the spectrum experi- included foods to identify what might be ing treated with the same ence, a behavioral medicine approach al- causing the constant emesis. Wcare and attention as a child not on the lows medical professionals to uncover the Through a series of changes, we discov- spectrum? true causes of disturbances and find solu- ered that Alex wasn’t vomiting on purpose In many cases, going to the doctor’s of- tions that work for families. The goal is to – as had previously been suggested. He had fice can be a daunting experience. It can promote health in order to produce good a reaction to histamine-rich foods which be frustrating for families to spend the time behavior and learning outcomes and pro- were then eliminated from his diet. When and energy to get medical help for an on- mote behavior change to produce health the offending foods were gone, his emesis going issue, like gastrointestinal problems, changes, not just sweep the possibility of disappeared as well. only to be told “it’s just behavioral and we a health diagnosis away simply because can’t help.” ASD in involved. The Next Steps for the Contrary to what some in the medical By using an integrated knowledge from Medical Community profession might believe, these issues are Michael J. Cameron, PhD, BCBA-D multiple sciences, we’re able to bring that real for families. According to research knowledge to bear on the health issues of Alex is not alone – there are hundreds of from the University of California: (Statistics from Daniel Geschwind: Pro- those with autism spectrum disorder. The children just like him. By adopting a com- gram in Neurogenetics, Department of techniques bridge behavioral and biomedi- putational behavior medicine approach • 55% of children with autism have a Neurology, Center for Autism Research cal sciences in order to reach solutions that for children with ASD, the medical com- sleep disturbance and Treatment, Semel Institute, David help children and families cope. munity can start being a true ally to their Geffen School of Medicine, University of patients and their families. The prevalence • 45% of children with autism have a California) The Case of Alex rate of common issues like gastrointestinal gastrointestinal disturbance disturbance, emesis, disruptions in sleep/ Although there’s a statistical concur- Alex, a boy on the ASD spectrum, had wake cycles and psychiatric disorders • 10% to 60% of children with autism rence between many secondary conditions uncontrolled emesis. His regular vomiting means that primary care physicians are go- have epilepsy and autism, the dangerous linear think- made it difficult for him to be accepted ing to see more and more of this in their ing in the medical community still exists. by his peer group at school, and at home patient population. It only makes sense to • 70% of children with autism have a When a doctor’s reflexive response is “it’s his family dreaded mealtime and constant shift to an interdisciplinary approach. co-morbid psychiatric disorder such autism, therefore it’s behavioral and not clean up. He was non-verbal, so he was un- as an anxiety disorder a medical issue,” they do a disservice to able to report his discomfort. see Behavioral on page 27 PAGE 16 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SUMMER 2014

SAP and Autism at Work

By Bonnie Squires is seven. And they were able to design a ro- ed he was. Dr. Shore shared his growing SpArc Philadelphia bot which dispensed the pills on a signal. So up, the way he “focused” on taking things the team passed with flying colors. apart and putting them back together again, On May 1, there was a huge launch like watches and bicycles - which led him utism has been very much in the of the Autism at Work initiative by SAP, to a satisfactory job while in high school news recently, especially since working with their partner, Specialist Peo- working at a bicycle repair shop. the report indicating that the ple and Specialisterne, outlining the corpo- SAP and Thorkil Sonne know there is level of autism has now been es- ration’s commitment to hire people on the a huge untapped pool of talent around the Atimated at one in sixty-eight children. And autism spectrum and try to guarantee that world - people with autism. Tens of thou- Laura Princiotta, who serves as the CEO they would succeed at their jobs. sands of jobs are not filled for lack of qual- of SpArc Philadelphia, a family of orga- The SAP national vice president, Jose ified candidates, but SAP, Sonne and The nizations which deal with intellectual and Velasco, in charge of the Autism at Work Arc believe that people with autism could physical disabilities in adults, took partic- initiative, flew in from Texas for the day- fill those jobs, fulfilling their potential and ular note. The Arc of Philadelphia, under long symposium. Jose himself has two becoming taxpayers. her direction and that of Tanya Regli, exec- young adult children, both on the autism Anka Wittenberg, SAP Chief Diversity utive director of The Arc of Philadelphia, spectrum, although technology is not their Officer, based in international headquar- was selected by The Arc of US for a pilot major interest. The Special People concept ters in Germany, spoke about the need to program with SAP Americas, the giant in- builds on people with autism who have devise a new system for hiring perfectly ternational technology corporation, with demonstrated skills which can be used in a competent employees but whose autism headquarters in Newton Square, Pennsyl- whole range of ways by a technology com- prevents them from going the usual route vania, to put forward candidates on the au- Bonnie Squires pany such as SAP. What may be viewed of interviews and the usual team-work re- tism spectrum who have technology skills. as a weakness by others is viewed as a quirement. She explaind that the program Using their network of contacts in the Sonne devised a four-week training pro- strength here - like focusing intently on has been successful for the past two years community, the SpArc and Arc officials gram for SAP candidates using Legos, to something and doing repetitive work. Sev- in India, Ireland, Canada, and in the U.S. put out the word and attracted more than a work as a team and create a robot. Laura eral of the five candidates recently hired SAP in Palo Alto, California, recently “on- dozen adults on the autism spectrum with can tell you all about how exciting it was have earned college degrees. boarded” their first hires with autism. Now technology skills. After an innovative inter- to see the five candidates who usually have One of the speakers on May 1 at SAP, Newtown Square has joined those ranks. view process where candidates were able difficulty with eye contact and with in- Stephen Shore, Ed.D., who is a professor SAP has committed to hiring people on the to demonstrate their abilities in non-tradi- ter-personal relationships, working togeth- at Adelphi University, had been diagnosed autism spectrum as 1% of their workforce tional ways, five candidates were selected er as a team. with autism at a young age. Fortunately, around the world by the year 2020. How to work with a staff member who had been The assignment was for the team of five his parents had refused to accept the med- exciting! And SAP has also trained mentors trained by Specialisterne, an organization candidates to come up with a theme for their ical professionals’ recommendation that and buddies on the teams which will support led by Thorkil Sonne, a Danish man (now robot and then build it. The team decided to he be institutionalized. The parents found the new hires - such a large number of SAP re-located to the state of Delaware), who is focus on senior citizens, learning that the a way to communicate with him, and ulti- also the parent of a child with autism. average intake of pills each day for a senior mately discovered how bright and talent- see SAP on page 26

Spectrum Services

A Cooperative Private Practice Offering an Array of Specialized Services Spectrum Services provides child and adult diagnosis, family and couples therapy, social seminar and social skills groups, specialized individual skill- building therapy, cognitive behavior therapy (CBT), trauma focused therapy and EMDR, dialectical behavior therapy approaches, mindfulness work, college coaching and transition support, psychoeducational, neuropsychological, and speech & language testing, vocational support, family support, and educational consulting for individuals and families affected by Autism Spectrum Disorders and related conditions. Lynda Geller, PhD, Founder www.spectrumservicesnyc.com • [email protected] 303 Fifth Avenue, Suite 1003, New York, NY 10016 AUTISM SPECTRUM NEWS ~ SUMMER 2014 www.mhnews-autism.org PAGE 17

When an ASD Diagnosis Isn’t the Whole Answer - A Diagnostic Perspective

By Kate Palmer, MA, CCP, CAS to recognize behaviors and symptomolo- and Lindsey Pfundstein, BA, AC, QMHP gy consistent with the current criteria set GRASP forth by the Diagnostic & Statistical Man- ual of Mental Disorders (DSM). However, historically speaking, there have always eceiving a diagnosis of ASD or been considerable overlaps of symptomol- Asperger’s Syndrome can be ogy observed with Autism (Grinker, 2007; intense, emotional, and validat- Becker, 2012; Frith, 1991; see also Kan- ing for an individual and his/her ner, 1943, Asperger, 1944). Schizophrenia, Rfamily. For many, it can begin a journey trauma disorders, PTSD, and Personality of self-discovery and understanding con- Disorders all have similarities to the Au- cerning one’s past experiences. Even in the tistic Phenotype. And, as the DSM-5 states best-case scenario for an ASD individual in the introductory section, “we have come to come to terms with his/her strengths and to recognize that the boundaries between weaknesses, possible sensory integration disorders are more porous than originally difficulties, relationship challenges, Ex- perceived” (American Psychological As- ecutive Functioning issues, and potential sociation, 2013). This issue has created employment concerns, it takes a great deal some concerns as to the best approach to of time and guidance from one’s network treatment for the population we are trained of support. With the proper treatments, net- to support. As we continue to provide ser- work of support, and guidance, there can vices to our members, we have over time be marked improvement in challenging ar- noticed some inconsistencies in a number eas which increase independence and qual- of individual’s psychological, physiologi- ity of life. But, what happens when an ASD cal, and sociological profiles regarding the diagnosis doesn’t demonstrate improve- known, and accepted, ASD criteria. Fol- ment with an individual’s issues and chal- lowing are several specific case examples lenges? There are many instances where Lindsey Pfundstein, BA, AC, QMHP and Kate Palmer, MA, CCP, CAS from our groups can be cited as reference an ASD diagnosis does not provide the an- to these inconsistencies. swers many are looking for due to possible address this issue while still providing the Autism Spectrum and their family support “John,” age 28, attended one of our misdiagnosis, co-occurring psychological much needed, appropriate care and treat- systems, we work with up to 150 ASD in- groups for nearly two years. He had offi- and/or physiological issues, family dy- ment for individuals diagnosed with ASD dividuals per month in our support group cial co-occurring diagnoses of Schizo-Af- namics, health and nutritional deficits, or or Asperger’s Syndrome. program format. As Certified Autism fective Disorder and Asperger’s Syndrome. meeting academic and residential service As Directors of GRASP, a nonprofit Specialists, and over 30 years combined His behavior was consistently disruptive, needs. Although this may initially seem a agency providing services, education, and experience in the Autism and Mental and daunting issue to raise, solutions exist that programming for teens and adults on the Behavioral Health fields, we are trained see Diagnosis on page 30 PAGE 18 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SUMMER 2014

The Importance of Resolving Psychosocial Stages for Adults with ASD Who Have Committed Criminal Acts

By Lino Faccini, PhD ties and own self-concept. Essential psy- communication, 2007), the developer of Chief Psychologist chosocial milestones, as defined by Gilson reconstructive therapy, “within each phase Brooklyn DDSO (1987) encompass the following: an indi- of therapy, the individual is presented with NYS OPWDD vidual’s symptoms first being diagnosed contradictory ‘forces’ that pull at the per- as consistent with an Intellectual Disabil- son. The goal is to withstand, negotiate ity (ID) or ASD, dealing with the birth of and personally resolve these contradictory majority of adults with an Autism siblings, commencing school, dealing with forces towards personal growth.” A posi- Spectrum Disorder (ASD) do adolescence, puberty, sexuality, and having tive resolution of these stages would con- not commit criminal acts. Those one’s sibling’s development and accom- tribute to a sense of positive self-worth, adults with an ASD who do com- plishments surpass one’s own. Additional- trust in oneself to manage one’s life as well Amit criminal acts represent about 1.5% of ly, finishing one’s schooling and education, as trust of others and that goodness in one’s all individuals with an ASD (Ghazziudin coping with an out-of-home-placement, life can last. In addition to these tasks are & Ghazziudin 1991) to 2.3% of all indi- the aging of one’s parents, possible loss of also those involving taking initiative in viduals with an ASD in special forensic staff/friends/peers, and the development of engaging in activities that add meaning to hospitals in the United Kingdom (Scragg medical illness and even mental illness are one’s life, developing pride in one’s ac- & Shah, 1994) These adults with an ASD also identified as stressors. Other stress- complishments, a coherent identity, and a are considered to have autism-based defi- ors that a person with an ID or ASD may capacity for closeness and intimacy with cits (Baren-Cohen, 1995; Howling, 1997; encounter includes a higher risk of one’s others. However, their substantial negative O’Brien, 2002) or psychopathology (Paler- own victimization, social stigma, possible resolution contributes to a deficient sense mo, 2004) that contribute to the commis- trauma and even the substantial stress of of self-value such as a sense of worthless- sion of the criminal acts. Also, Eriksonian congregate living. ness, an ongoing sense of doubt in not be- Psychosocial deficits have been suggested Lino Faccini, PhD Many will notice that the developmen- ing able to be oneself, exert self-control, as another set of factors that mediate the tal milestones identified by Gilson (1987) and make important decisions for oneself. connection between an ASD and criminal- to positively negotiate psychosocial tasks, are also those that many of us must nego- Furthermore, one can be nagged by a sense ity (Faccini, 2014). This article presents as identified by Gilson 1987, but also need tiate throughout our lives. However, there of guilt over inappropriate actions or the the developmental framework of “recon- to resolve essential Eriksonian Psychoso- are another set of developmental tasks, as lack of relevant actions and left with a structive therapy” and discusses its need in cial stages to develop a substantial quality identified by Erik Erikson, that are as basic sense of inferiority that one cannot direct regard to therapy with adults with a high of life. Gilson (1987) identified 14 psycho- to the developmental of a coherent sense one’s life towards the fulfillment of one’s functioning ASD and criminal acts. social milestones that an individual with an of self, and a fundamentally satisfying life. goals, or a good life. It may be at this point Adults with an ASD face the same Intellectual Disability or an ASD may en- These developmental stages are identified in one’s development, that a person may stressors and challenges of resolving the counter as they age. In encountering these as the development of a sense of self-val- resort to manipulation and the control of most basic of human developmental mile- “milestones” the person would undergo ue, autonomy, pride, identity, intimacy etc. stones. Not only do adults with an ASD try experiences that would stress their abili- According to Dr. Jerome Schulte (personal see Criminal Acts on page 34

Anger from page 1 There are many other coping strategies but many of them also state that caregivers that could be used to help people with or other authorities dismiss their best efforts thoughts and feelings, but they can benefit ASD manage their anger and use its en- to resolve their anger triggers and that they from relaxation strategies (Taylor & No- ergizing aspect to their advantage. These eventually either give up or act out because vaco, 2005). Their angry feelings can also include assertiveness and problem-solv- others “don’t listen.” Therefore, the clinical be decreased by introducing the opposite ing, strategies that are crucial in modifying work is more useful when anger is con- emotion (as suggested by Dialectical Be- anger-evoking situations. Again, working ceptualized as resulting from an issue that havioral Therapy, Linehan, 1993). For ex- with the system in which the person exists exists in the system, not necessarily within ample, they can engage in an activity that could increase a person’s chances to use the individual, and work includes a system, makes them feel good or happy, such as these skills effectively. such as a family, program, or residence. watching a comedy show or playing with pets, to decrease their frustration. These Situation Modification Conclusion simple techniques could be used preven- tively, to reduce overall stress level, or as Any work on behavior modification Both coping strategies and situation mod- coping strategies. It cannot be expected, starts with an assessment. In anger man- ification are needed when helping people however, that all people on the spectrum agement, anger logs are used to identify with ASD to manage anger. Special con- will use these strategies without being re- situations that anger the person (anger siderations need to be given to the unique minded or encouraged. That is why work triggers), and specifics of the person’s re- characteristics of people on the spectrum with the person’s support team is crucial. sponse. Completing anger logs is often and anger management techniques that are One anger management strategy is to difficult for people with ASD and typically used with the general population need to identify angry thoughts and challenge them. Grazyna Kusmierska, PhD staff or family members assist in compiling be modified to utilize strengths and address This work is possible with some people with them. The logs provide information which difficulties related to those characteristics. ASD and not possible with others. Cogni- spectrum and helps to decrease their anger is used to determine situational and behav- tions that evoke anger include blaming and with behaviors or attributes of others. ioral patterns of anger. Grazyna Kusmierska is a psychologist at labeling others and deeming their behavior People with ASD have difficulty seeing Once the conditions related to the per- Premier HealthCare, a health care prac- to be wrong and intentional. For example, situations from the perspective of others. son’s anger are identified, work on chang- tice serving people with intellectual and a person with Asperger’s syndrome who is My patients with Asperger’s often say, ing them could start. Counseling could help developmental disabilities and their fami- sensitive to the smell of cigarette smoke, be- “I don’t know how people operate.” This a person with ASD to find a solution that lies throughout New York City. For more comes outraged around smokers. He says to limited ability to understand what is going would modify the situation in order to re- information about psychological and other me that he thinks that smokers are “a men- on with others, what do they think, and move the anger trigger and to advocate for services available through Premier Health- ace to the society” and that they “always how do they feel, causes a great deal of the change needed to stop feeling angry. Care, visit YAI.org or call 212-273-6182. blow smoke in my face, to spite me and to misunderstanding of the motivation or in- This aspect of anger management is crucial; make me sick.” Cognitive therapy could tentions of others. Interpersonal situations It would be unwise to expect any person just References be used to help this individual identify and become, therefore, ambiguous and easy to to adjust to the existing situation and sup- challenge his unhelpful thinking styles, such misinterpret. Difficulty reading social cues press or otherwise control those angry feel- Averill, J. R. (1983). Studies on anger and ag- as black and white thinking, labeling, mind adds to the confusion and frustration that ings if the situation continues to trigger that gression: Implications for theories of emotions. American Psychologist, 38, 1145-1160. reading, or over-generalizing. It is also help- many people with ASD experience when anger. It would also be unwise to expect that ful to ask a person who is angry at smokers interacting with others. Anger manage- all situations could be changed, but many Berkowitz, L., & Harmon-Jones, E. (2004). to think about someone they like and respect ment with people with ASD needs to focus of them need to change in order to prevent Towards an understanding of the determi- who also happens to smoke. This technique on improving their perspective-taking and triggering the person’s anger. Unfortunate- nants of anger. Emotion, 4, 104-130. introduces an element of complexity to the challenging errors that they make while at- ly, change is difficult. Many people with black and white thinking of people on the tempting to read minds of others. ASD can and do advocate for their needs, see Anger on page 23 AUTISM SPECTRUM NEWS ~ SUMMER 2014 www.mhnews-autism.org PAGE 19

Social Problem Solving: Best Practices for Youth with ASD

By Michael C. Selbst, PhD, BCBA-D information processing that children cycle and Steven B. Gordon, PhD, ABPP through when evaluating a particular social Behavior Therapy Associates situation: encoding (attending to and encod- ing the relevant cues), interpreting (making a judgment about what is going on), clarify- oey, age 9, has been diagnosed ing goals (deciding what their goal is in the with an Autism Spectrum Disorder particular situation), generating responses (ASD), and due to his high function- (identifying different behavioral strate- ing has been mainstreamed into a gies for attaining the decided upon goal), Jfourth grade classroom with a shadow. His deciding on the response (evaluating the challenging behaviors typically center on likelihood that each potential strategy will his peer interactions in spite of adequate help reach their goal and choosing which academic performance. When in a group strategy to implement), and performing situation he becomes very argumentative the response (doing the chosen response). when his ideas are not used, becomes very It is assumed that the steps outlined above bossy on the playground, and has run out operate in real time and frequently outside of the classroom when things do not go his of conscious awareness. Numerous studies way. Megan, age 14, has also been diag- have shown that unpopular children have nosed with ASD. She isolates herself from deficits at multiple stages of the SIP mod- her peers and rarely initiates or responds to el. For example, they frequently attend to greetings. Conversations are almost non- fewer social cues before deciding on peers’ existent unless they are focused on her fa- intent, are more likely to assume that peers vorite topics of anime or fashion. have acted towards them with hostile intent, Children with ASD described as above are less likely to adopt pro-social goals, are typically have significant social skills Michael C. Selbst, PhD, BCBA-D Steven B. Gordon, PhD, ABPP more likely to access aggressive strategies impairments and often require direct in- for handling potential conflicts, evaluate struction in order to address these deficits. sult contribute to peer acceptance. Social a social skills curriculum which incorpo- aggressive responses more favorably, and They often have difficulty in many of the skills impairments, on the other hand, con- rates evidence-based practices to address are less skillful at enacting assertive and following areas: sharing, handling frus- tribute to peer rejection. The ability to get this very important area. prosocial strategies. tration, controlling their temper, ending along with peers, therefore, is as important Social information processing (SIP) is Deficits in social skills are one of the de- arguments calmly, responding to teasing, to self-esteem as the ability to meet with a widely-studied framework for under- fining characteristics of children with ASD. making/keeping friends, complying with academic success in the classroom. This standing why some children have difficul- These impairments manifest in making and requests. Strong social skills contribute article will review the domain of social ty getting along with peers. A particularly keeping friends, communicating feelings to the initiation and maintenance of posi- skills, the assessment of social skills, the well-known SIP model developed by Crick tive relationships with others and as a re- importance of social problem-solving and and Dodge (1994) describes six stages of see Problem Solving on page 31 PAGE 20 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SUMMER 2014

Unique Collaboration for Youth with ASD

By Bernadette Murphy Bentley, MPA NCSP, Fellow in Clinical Psychology; and Autism Resource Specialist Bernadette Murphy Bentley, MPA, Autism Tufts Medical Center Resource Specialist. Focusing on youth with ASD for whom standard medical, therapeutic, and educa- espite the abundance of supports tional treatments have not been working available today to help young well, the Tufts ABC team collaborates people with Autism Spectrum with the family, the school, the pediatri- Disorder (ASD), many youth are cian, in-home and private therapists, and Dstill struggling behaviorally. In most cases all other providers to determine possible families do everything they are advised to causes for the youth’s challenges. Using do by professionals, but their children are a modified Multi-System Therapy (MST) still getting suspended from school, causing approach over three to ten visits, the team problems at home, and are unable to partic- then integrates treatment with all of the ipate in many activities of daily life. Some involved professionals to develop the of these youth have been placed in psychi- youth’s needed skills and to improve func- atric hospitalizations, and others have been tioning. After a maximum of ten visits, involved with the juvenile courts. care coordination is returned to the child’s With up to 70 percent of people with community medical providers to carry on ASD meeting diagnostic criteria for at least integration of treatment. one emotional or behavioral disorder, a What does the service look like? One team at the Floating Hospital for Children of the key contributions of the Tufts ABC at Tufts Medical Center in Boston devised The Tufts Autism Behavioral Consultation Team: Program is in how the team works with an innovative approach to address the be- Christina Mulé, PhD, NCSP, Eric Goepfert, MD, the youth’s service providers and provides havioral health needs of this population. In extensive telephone consultation and case 2011, they proposed the creation of a joint Erik von Hahn, MD, and Bernadette Murphy Bentley, MPA management, in addition to face-to-face program between the Tufts Divisions of meeting time. Although the program always Child Psychiatry and Developmental-Be- cember 2012. The philanthropic donation at home, in school, and the community start with the child and his or her fami- havioral Pediatrics to integrate care for was critical: the unique interdisciplinary through a family-centered, interdisciplin- ly, ABC team appointments can include these youth so that they could experience and comprehensive nature of the ABC Pro- ary approach informed by empirically val- siblings and grandparents; teachers and success in all aspects of their lives. gram requires significant clinician time that idated behavioral and psychotherapeutic school therapists; staff from the Depart- A private philanthropist saw the merits of is not reimbursed through insurance plans. practices. The ABC team includes Erik von ment of Developmental Services and other the novel endeavor and provided a substan- The mission of the Tufts ABC Program Hahn, MD, Developmental-Behavioral Pe- state programs; educational advocates and tial gift to launch the Tufts Autism Behav- is to improve the emotional and behavioral diatrician; Eric Goepfert, MD, Child/Ado- ioral Consultation (ABC) Program in De- functioning of youth ages 6-22 with ASD lescent Psychiatrist; Christina Mulé, PhD, see Collaboration on page 31

Dianne Zager Joins MHNE Board of Directors

Staff Writer of the board, she will work to continue the of Child and Adolescent Psychiatry Fur- Autism Spectrum News practice of providing evidence-based in- man Fellowship, Leo Doherty Educational formation that responds to real-life needs Research Service Award, New York City’s of individuals with mental health issues, Department of Education District 75 Ser- t its June meeting, the Board especially those on the autism spectrum; vice in Leadership Award, and the Thomas of Mental Health News Educa- so that information may be shared among Donlon Award for Educational Leadership tion, Inc. (MHNE), publishers consumers, families, educators, clinicians, and Mentoring from the Northeastern Edu- of Autism Spectrum News and and related service providers in the field. cational Research Association. ABehavioral Health News elected two new “I am committed to continuing and Dr. Zager received her BS in Special Ed- members: Dianne Zager, PhD, Michael C. promoting the philosophy and ideals of ucation/Psychology from Boston Universi- Koffler Professor in Autism at the Dyson Mental Health News Education, Inc., ty, MS in Education from Boston Universi- College of Arts and Sciences of Pace Uni- which foster dissemination of scientific re- ty, and PhD in Educational Research from versity, and Kimberly A. Williams, LMSW, search-based practices that have potential Hofstra University. The fourth edition of from The Mental Health Association of to improve services and quality of life. It her text, Autism Spectrum Disorders: Iden- New York City (MHA-NYC). Ms. Wil- is my hope that I will continue the tradition tification, Education, and Treatment will liams’ election to the MHNE Board will be of sharing evidence-based information to be published in by Routledge/Taylor & announced in the Behavioral Health News improve and increase successful commu- Francis. She recently was senior editor on fall 2014 issue. nity integration and accessibility to needed a text titled, Educating Students with Au- Dianne Zager, PhD, is the Michael services.” tism Spectrum Disorders: Research-Based Koffler Professor in Autism at Pace Uni- Dianne’s history of service and leader- Principles and Practices with Michael versity in New York City and is president ship at the regional and national levels in- Wehmeyer and Richard Simpson, pub- of the International Council for Excep- cludes serving as President of the North- lished by Routledge/Taylor & Francis. tional Children’s Division on Autism and eastern Educational Research Association Educating College Students with Autism, Developmental Disabilities. She founded Dianne Zager, PhD and President of the New York State Coun- written with Carol Alpern and Barbara one of the nation’s first college support cil for Exceptional Children. She is an McKeon, was published in 2012. programs for students with autism, has education as a special education teacher, advocate for individuals with disabilities Dr. Zager has gained national recogni- consulted with school districts across the administrator, teacher trainer, researcher, and their families. She has served on edi- tion for her work in integrated behavior- US to develop high quality educational and advocate. torial boards of national and international al experiential teaching, and transition to programs for students with autism, and Dr. Zager has devoted her career to teach- educational journals, and was founding adulthood and employment for persons has over 30 years of experience directing ing students with significant disabilities, editor of Focus on Autism and Other De- with autism. She has presented over 300 graduate and post-graduate programs to preparation of school-based professionals, velopmental Disabilities, currently one of papers, keynote addresses, and workshops train school personnel in autism. She has and research in disabilities - most especial- the most widely read autism journals in across the US; and has authored numerous worked with students with autism and re- ly autism. She is pleased to join the board the U.S. In addition, she has been editor books, chapters, and research papers on lated learning differences from the early and looks forward to being an active and of The Educational Researcher. Awards topics related to education of students with childhood level through postsecondary involved board member. As a new member received include the American Academy autism spectrum disorders. AUTISM SPECTRUM NEWS ~ SUMMER 2014 www.mhnews-autism.org PAGE 21

Technology and Autism: The Backbone of Effective Collaboration

By Maria F. Wynne, PhD, BCBA-D therapists, occupational therapists, BCBAs fect world, that would be true. And, as BC- Executive Director and teachers all worked together. BAs we should strive to bring the rigor of Wynne Solutions LLC I have seen the view from the research the scientific approach to everything we do. bench, from a clinician’s viewpoint, from the But we don’t live in a perfect world. We live teacher’s desk, through a school administra- in a world where budgets are strained, where t is an exciting time to be working in tor’s eyes and from within a family’s home (in many rural areas) clinical expertise is sim- the field of autism. The amount of re- that has been affected by an autism diagnosis. ply not available, where challenging home search being conducted on autism di- If we are to look at the future of autism environments may have students who have agnosis and treatments now cuts across care, it is a future that harnesses the unique difficulty transitioning into a classroom. As a Imany disciplines and specialized fields. At contributions and perspectives each one of teacher, I saw this every day. In some cases, I major conferences, it is not unusual to hear those players brings to a child’s life. Just as may not have had full control of the process. about breakthroughs from geneticists, psy- in the research world, no one discipline has Often, there were so many interventions hap- chologists, behaviorists, neurologists and a the answer. pening at once, I was not at all equipped at host of other disciplines. The challenge we Luckily, we live in a world that is increas- the time to use my savvy ABA skills that had face is enormous, but the brainpower that ingly interconnected through technology. As worked so well in university settings. There is marshalled on our side is growing expo- I bring my practice into the future, I have em- were many variables to evaluate and differ- nentially. I can see clear signs of optimism braced many of the new and powerful tools ent clinicians or team members tied to specif- in the collective progress we are making. that are available online and I have seen how ic pieces of an individual student’s program. What is even more exciting to me is that much easier collaboration becomes. It was not possible to isolate treatments. I had the insights of researchers in (apparently) I’d like to discuss what I see as the most to work with my colleagues and do the unrelated fields is beginning to give insight promising trends in autism care: 1) the in- best with the data we had, and combine our to the work of others. In my research on Maria F. Wynne, PhD, BCBA-D creasing willingness of specialists to col- skills to find consensus (or something close the comparative efficacy of different video laborate and 2) the power technology can to it) so we could move forward. modeling techniques, for example, I have I began working as a clinician in several bring to our practices. I will discuss these I have worked in many settings. I have consulted with neurologists, linguists, audi- cutting-edge therapy programs in private by giving practical examples. worked in settings where speech therapists ologists, psychologists, speech pathologists, pay homes. Within a year I was supervis- and BCBAs saw each other as rivals. I have educators and even parents. Each has add- ing those programs and coordinating teams Collaboration and Flexibility worked in settings where parents viewed ed critical insight to my work because each of specialists. From there, I went on to ob- Are the Keys to Success administrators as enemies that would be possesses a unique lens through which to tain my doctorate in special education and threatened or sued. I have also worked in help me analyze and process my findings. was able to work directly as an educator While I conducted studies in grad school environments where a spirit of flexibility I feel fortunate to have the multi-facet- in special education classrooms, while my advisors always told me to stay away and teamwork were present. These collab- ed background I do—it gives me a pow- also teaching at a university. I followed from “treatment packages” as we would orative environments always resulted in erful impetus toward collaboration, and a that with over a decade in a large clinical never know what specific part of the treat- bigger gains and observably happier children. perch from which to see what the future setting, advising parents and overseeing ment package was working (unless of course of care may look like. Fifteen years ago, school district programs where speech we could set appropriate controls). In a per- see Technology on page 29 PAGE 22 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SUMMER 2014 Bringing Autism Insurance Mandates into Compliance with the Affordable Care Act

By Cari Brown, BS insurance mandate. The qualifying criteria tism insurance mandate into compliance Advocate must be met: with the ACA. Planned years in advance, the Colorado Division of Insurance was 1. Obviously, the state must have an au- given authority to make the conversion in hen care isn’t taken, grave tism insurance mandate HB 13-1266. Specifically, in the HB 13- problems can arise when a 1266 the Colorado Division of Insurance state’s autism insurance man- 2. This mandate must be an essential health was charged to create a rule that would “... date is brought into compli- benefit in that state. Most of the time, require coverage of a number of services Wance with the ACA. Starting in 2014, “dollar this also means that individual plans of visits that is actuarially equivalent to the value” limits for essential health benefits are will be required to carry this coverage. dollar limit of the benefit as it existed prior not allowed per the Patient Protection and to the effective date of this paragraph.” Affordable Care Act, more frequently called 3. The autism insurance mandate must A study was ordered by the State of the ACA or “Obamacare.” Seeing as how have a “dollar value” limit. As will be Colorado from Wakely Consulting to de- many states with autism insurance mandates examined later, exactly what qualifies termine the actuarially equivalent level of have dollar value limits specifically written as a “dollar value” limit is up for debate. visits to the old dollar limits. The table on into the law, a unique and varying process is page 29 details the report’s findings. taking part across the nation. Below is a list of the states that meet Initially, the Colorado Division of In- Some states are allowing insurers and/or these three criteria. As a result, they may surance intended to use the exact numbers individual families deal with this new lan- experience changes in the future to their au- produced by the Wakely Consulting Report guage. Other states, such as Colorado, are tism insurance mandates depending on that in the new regulation. In other words, un- in the process of changing the mandates state’s legislature and regulatory authority: der the new regulation, children 0-8 years either by passing new laws or the state’s Cari Brown, BS old would receive just 4.4 hours of ABA regulatory authority issuing new bulletins Arizona, Arkansas, Colorado, Connecticut, therapy per week and children 9-19 years or regulations. es are brought about, families, clinics, and Delaware, Illinois, Kentucky, Louisiana, old would receive just 1.48 hours of ABA Each process can be wrought with prob- even advocacy organizations can misun- Maine, Missouri, Montana, Nevada, New therapy per week. However, under the old lems: insurance companies far too fre- derstand why these changes are happening, Hampshire, New Jersey, New Mexico, dollar limits, children could expect to re- quently look more toward the immediate and, perhaps more importantly, what can New York, Rhode Island, Texas, West Vir- ceive at least 2-4 times as much therapy. bottom line rather than what is most effec- be done about it. ginia, Wisconsin In order to prevent this significant loss, tive treatment course over the long term; the autism community in Colorado banded families frequently lack the knowledge and State by State Case Study of Colorado together; with a loud voice they communi- resources necessary to effectively appeal cated together; with a loud voice they their cases; and federal law is open to inter- It’s important to note that not every state Colorado was one of the first states to pretation. Additionally, when these chang- will need to make changes to their autism undertake the process of bringing their au- see Insurance on page 29

Autism Paradox and the Broken (Special) Education System

By James O. Grundvig A Broken Special Education System complex, multi-step problems in seconds. CEO and Founder Give him a new math theorem once, and Cloudnician LLC Unlike being force-fed the basics in math, unleash the savant in him. Rain Man can’t speech, and behavior at a third grade level wear his size 11+ shoes. Fridrik has one in his New York City public school pro- advantage over kids with Asperger’s: he ouTube and the Internet have gram, where Fridrik is one of six ASD chil- feels empathy and understands other hu- provided a boost for my dren in class, the curious boy has ventured man emotions. 14-year-old autistic son, where on his own in terms of education. Technol- his public school has failed to ogy, from the iPad and mobile apps to “tech Math at the Speed of Light Yeducate him. Technology has empowered talk” devices that help them communicate, Fridrik to explore his curiosity, while ex- has been a key enabler for parents and spe- Today, Fridrik cranks through math pands his intelligence. cial educators to interact with autistic chil- problems that college graduates take for Using the 1990s cartoon series Dexter’s dren today compared to the ASD kids in the GMAT exam, answering questions as Laboratory and its 78 episodes as an au- the 1990s, when the neurological disorder fast as people watch the colors change on diographic template - knowing every line exploded into a full blown epidemic. a traffic light. of dialogue from every episode - Fridrik For school having an Individual Edu- Part of the problem with his IEP centers taught himself Russian in a week. He com- cation Plan (IEP), designed from the top on information gleaned from test taking, pared the Russian dialogue of the charac- down by the U.S. Department of Educa- and test taking only. They appear to be ters with the English lines he knew from his tion, hasn’t helped him or his teachers grasp the only metric to measure intelligence in mind’s database. Never once did he open his deficits or even know about his unique special ed kids. Yes, my son blows through the American version to compare (www. gifts. For the record, Fridrik has had five math problems with all types of complexi- wikipedia.org/wiki/Dexter’s_Laboratory). teachers the past four years in the same ty, but he doesn’t test well. That’s because Fridrik took the mouse and broke down James O. Grundvig Manhattan special ed public school (www. another part of his brain - Obsessive Com- each Russian word into syllable and then wrightslaw.com/info/iep.index.htm). pulsive Disorder (OCD) - prevents him into sounds bites. Over and again, he broke cartoons he saw as a child, Fridrik taught With the IEP the only tool for new teach- from answering questions. down the Russian sounds into a mathemat- himself Spanish - his mother tested him - ers to learn about Fridrik and his class- With the regiment of a drill sergeant, ical form that he understood. By the sec- and has a working knowledge of Japanese, mates, each fall semester his homework Fridrik needs a track runner’s starting gun. ond week, he laughed at the Russian jokes German, and French. Russian and Jap- began with the same dumbed-down items: In his case, his mother sits next to him and humor. anese are about as far from Western lan- counting coins, reading elementary school and taps his wrist to get him to glance at a I asked, “Fridrik, do you understand guages as one can get. But when broken books, matching shapes and sizes. Bored problem - a paragraph of words, radical ex- Russian?” down into mathematical bits, they appear out of his mind, he silently protested, tun- ponents, square roots of fractions squared He looked at me with a confident stare, easy for him to handle. It also helps having ing out his teacher. No one at school knew by fractions, any kind of geometry. In less and replied, “Jaaa.” For non-verbal Autism a photographic memory to go with his au- how smart he was; nor did they realize he than a second, he looks up and away. It Spectrum Disorder (ASD) children, ja is diographic database. had taught himself to read. Today, his ver- takes him longer to write the answer than easier to say than yes. Rosetta Stone language program watch bal comprehension is at high school level. Over the past couple of years using other out. He and some of his peers don’t need you. In math, he excels making mincemeat of see Autism Paradox on page 33 AUTISM SPECTRUM NEWS ~ SUMMER 2014 www.mhnews-autism.org PAGE 23

Autism and Bipolar Disorder

By Jessica Hellings, MD (ADHD). ADHD is even more commonly and Andrea Witwer, PhD associated with autism. Its symptoms can Ohio State University include extreme frustration and difficulty controlling emotions, as well as hyperac- tivity, distractibility and impulsivity. n individuals with Autism Spectrum In a recent study1 of children with autism Disorder, establishing an additional (ages 7 to 17), we found that nearly a third diagnosis of Bipolar Disorder can be had frequent episodes of “elevated mood.” very challenging. In the article below, Just over 60 percent could be described IDr. Jessica Hellings and Dr. Andrea Witwer as “very irritable.” Just over half talked of the Autism Speaks Autism Treatment excessively. Other common symptoms Network discuss a study they conducted in included excessive activity such as pac- 2013 that helped identify true bipolar dis- ing (43 percent), accident proneness (44 order symptoms in individuals with autism. percent), distractibility (43 percent) and a The article outlines some behavior changes tendency to “get in trouble” (47 percent). that may indicate that something more than Sleep disturbances were also common. ASD is going on with your child. The point is that all these behaviors could For those of you not familiar with bi- be considered symptoms of bipolar disorder! polar disorder, it’s a mood disorder once Yet clearly these children did not all have known as “manic depression.” Persons bipolar disorder. In many cases, their “ma- with bipolar disorder alternate between Jessica Hellings, MD Andrea Witwer, PhD nia” symptoms were, in fact, symptoms a frenzied state known as mania and epi- of autism. ADHD symptoms also overlap sodes of depression. While some individ- However, we believe that bipolar disor- understanding such questions. Even mild with these behaviors. uals experience only the manic episodes, der is mistakenly over-diagnosed in those language difficulties can make it difficult In our study, we found we could tease many affected individuals rapidly alternate with autism. In part this is because some of to relate thoughts and feelings. apart the symptoms of true bipolar disorder between these two states and experience their symptoms can overlap. For these reasons, traditional methods of from those of autism by looking carefully great irritability. It’s particularly challenging to diagnose assessing psychiatric disorders can be in- at when the symptoms appeared and how As with other psychiatric disorders, psychiatric disorders in individuals who appropriate for many of those with autism. long they lasted. An example would be a studies suggest that bipolar disorder may have language impairments or intellectual It’s particularly important for the doctor to teenager with autism who has always been be relatively common among children and disabilities – as do many of those with au- get to know the individual and his or her high-energy, happy and socially intrusive. adults with autism. Some studies have tism. When diagnosing typically develop- family and environment before attempting She shouldn’t be labeled as manic just found that as many as 27 percent of those ing children and adults, we can ask them such a diagnosis. because she talks to strangers and makes with autism also have symptoms of bipolar about their emotions and experiences. Yet The challenge is to distinguish symptoms inappropriate comments. By contrast, let’s disorder. By contrast, its prevalence in the we know that many individuals with au- of a mood disturbance from those of autism general population is around 4 percent. tism have trouble expressing themselves or or attention deficit hyperactivity disorder see Bipolar Disorder on page 28

Anger from page 18 Disorders, 34, 229-235. Buckley, K. E., Winkel, R. E., & Leary, M. R. Kassinove, H., & Sukhodolsky, D. G. (1995). An- (2004). Reactions of acceptance and rejection: ger disorders: Basic science and practice issues. In: Effects of level and sequence of relational eval- H. Kassinove (Ed.). Anger Disorders: Definition, uation. Journal of Experimental Social Psy- Diagnosis, and Treatment (pp. 27-48. Washington, chology, 40, 14-28. DC: Taylor & Francis. Deffenbacher, J. L. (1999). Cognitive-behavioral Konstantareas, M. M., & Stewart, K. (2006). Af- conceptualization and treatment of anger. Journal fect regulation and temperament in children with of Clinical Psychology, 55,295-309. autism spectrum disorder. Journal of Autism and Developmental Disorders, 36, 143-154. Fitzgerrald, M., & Bellgrove, M. A. (2006). The overlap between alexithymia and Asperg- Linehan, M. M. (1993). Cognitive-behavioral er’s syndrome. Journal of Autism and Develop- treatment of Borderline Personality Disorder. mental Disorders, 36, 573-557. New York, USA: The Guilford Press. Gaus, V. L. (2007). Cognitive-behavioral ther- Samson, A. C., Huber, O., & Gross, J. J. (2012). apy for adult Asperger syndrome. New York, Emotion regulation in Asperger’s syndrome and USA: The Guilford Press. high-functioning autism. Emotion, 12, 659-665. Hill, E., Berthoz, S., & Frith, U. (2004). Cog- Taylor, J. L., & Novaco, R. W. (2005). Anger nitive processing of own emotions in individu- Treatment for People with Developmental Dis- als with autistic spectrum disorder and in their abilities. Chichester, England: John Wiley & relatives. Journal of Autism and Developmental Sons, Ltd. PAGE 24 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SUMMER 2014

The Regular Tiger: A Father Deals With His Son’s Obsessions

By Jeff Stimpson long elephant on the edge of the dining room side on those rotten mornings, he’d wriggle Journalist table. The pigs on the hutch, flanked on one back off the bus and sometimes lay flat on side by the lion and on the other by the li- the actual pavement of East 108th Street. oness. The big elephant, the rhino and the Repetitive behaviors and restricted interests little past 10 on a Tuesday night turtle. The plastic cat, the plastic salamander are among autism’s core symptoms, accord- my 16-year-old son Alex jack- and otter and aardvark and chickens. Ani- ing to a study cited by Autism Speaks (www. knifes up in his bed, throws mals detailed down to the ruffles in the fur autismspeaks.org/what-autism/treatment/ down his blanket, looks at me, and the shine of the eyes as they stare at you. treatment-associated-psychiatric-conditions). Araises his arm and moans, “Tiger.” Mental health? I don’t know. All we tell The symptoms of autism’s version of obses- “I don’t have it, Alex. Did you have it anyone who asks is that somewhere among sive compulsive disorder often fool therapists in here?” those animals is Alex’s idea of order. and doctors unfamiliar with autism. Does he mean the $5, four-inch tiger or Those with ASD may develop obses- “A distinguishing hallmark of OCD is that the $4, four-inch one with his (her?) head sions for several reasons, according to Great the compulsive thoughts or behavior cause turned slightly to the right? Or the little one Britain’s National Autistic Society (www. anxiety,” the citation reads. “Persons with from the dollar set that also contained a little autism.org.uk/living-with-autism/under- autism are not generally bothered by their plastic lion, a jaguar and – ha ha – a zebra. standing-behaviour/obsessions-repetitive-be- repetitive behaviors and restricted interests. A food chain for a dollar. Sometimes Alex’s haviours-and-routines.aspx), including: Just the opposite, these behaviors and inter- thing for plastic animals is a real riot. ests tend to bring comfort and enjoyment.” Sometimes. “Tiger? Aw, tiger.” • Obsessions may provide structure, or- To some. Wednesday: I turn on the cof- TIGER! He’s on his feet and lifting his der and predictability; fee and wake him up. Maybe he forgot all mattress to peer under the bed and around about it overnight. the bedframe. It’s pushing 11:00 pm. “Aw Jeff Stimpson • Special interests may be ways to start “Tiger? Tiger.” His arm is up as his eyes tiger, tiger. A-ba-ba-ba!” Alex (PDD-NOS) conversations and interaction; and still squint with sleep. What’d Jill once say usually uses more words than this. where starts craning under the radiator next about this? Life comes to a halt. So do I. “Alex, I don’t have it and I don’t to his bed. • Obsessions may help people relax and “School, Alex, then tiger. You’ll find it know where it is. You have to take care of “Alex, we will find it tomorrow. You feel happy. when you get home. Mom’s working from your things, Alex. Where did you last have have to go bed now. Here-” I switch on a home today and she’ll look for it.” Did he your tiger?” flashlight and hand it to him. Alex has nev- Fine but does it have to be when the toss it out the window, I wonder? I show “Ti-GER!” He’s back out to the living er used a flashlight. What a good parent to school bus is coming? On more than one him the plastic cat, the big tiger, the little room, where I find my wife Jill shoving turn this into a teaching moment. school morning Alex demanded a lost plas- tiger, the other big tiger. Wrong. Wrong and her face under the couch and doing her part “Tiger…” tic animal (Rhino! ‘potomos!) minutes be- wrong. You can’t fool him. Can’t reason to erase what’s normal in our household. Alex has a ton of plastic animals – too fore his bus pulled up. “Alex, come on!” with him, either. “Aw tiger-” I actually get “I’ve gone through all the regular tigers,” many to keep straight, Jill thinks – standing “‘potomos!” In the lobby his hand would him into his hoodie, out the door and down she says. We offer them to Alex. This one? at attention along the edges of almost piece shoot up and he’d bolt for the elevator back This one? “Aw, tiger.” Back to the bedroom of furniture in our apartment. The two-inch- to our apartment. If we even made it to curb- see Obsessions on page 28

Selfhood from page 11 skills independently rather than doing it for or activity that reflects that interest where he has owned ever since. the child. Every child is different so what he or she can feel like the star. A child who growing up and adolescence. The surge he or she is capable of will vary depending loves a specific topic may be able to cre- Adolescents with Asperger’s, like every- of hormones, the ever-changing physical on age and abilities. Praise and reward inde- ate a blog with help of a parent, and write one, struggle to develop a sense of identity bodies, confusion about roles, and the chal- pendence whenever possible. The sense of about whatever interests him or her. A child and feel empowered and successful in their lenging quality of the teenager are actually self-esteem the child feels when being inde- who loves to sing can join a choir, and a lives. In giving them the space and support developmentally appropriate responses to pendent can be quite amazing. child who likes to act can join a drama or to engage in this difficult, yet rewarding a difficult developmental time. Sometimes improv group. These experiences can help journey, we are giving them life skills that parents are surprised when they call me up Accept and support failure as part of life the child feel good about him or herself. will reap benefits across their lifetime. in a “crisis” because their child is acting - Individuals with Asperger’s often have more challenging and difficult. My re- poor frustration tolerance and difficulty Let the child exercise some autonomy Shuli Sandler, PsyD, is a clinical psy- sponse may be reassuring them that they with cognitive flexibility. As mentioned - Many children with Asperger’s are in- chologist licensed in New York and New are acting like a developmentally appro- previously, the chasm between strengths credibly reliant on parents and caregivers, Jersey. She received her doctorate from priate 15 year old, and it is in fact good and weaknesses can be enormous. A child as they should be. These adults in their Long Island University - C.W. Post Cam- news. Sometimes the Asperger’s diagnosis may wonder, “how come I am such a read- lives can literally serve as their lifeline. pus in 2007. She works with children, ad- has become the lense through which every ing whiz, but I can’t seem to figure out what As they mature, they may be ready to take olescents, and adults in individual, couple, behavior is viewed, but the child is also a to do during recess?” As a result, the child on some more responsibility with decision and family sessions, as well as psycholog- teenager and tolerating some of the typical may shut down and resist taking risks. As making and be ready to exercise more au- ical testing. Among her areas of focus in adolescent behavior can be quite healthy parents, teachers, and therapists, we are in tonomy. The adults in their lives can serve her practice are children and adolescents for the child. The child may also be uncom- a unique position to encourage taking risks, to support that initiative and help them with Asperger’s Syndrome, as well as those fortable with the instability of this time so and accept that failure is a natural part of talk through different options, rather than who are experiencing a variety of difficul- education about puberty and adolescence life. Adolescence may be a ripe time to ex- knocking down ideas, or only presenting ties in school, and young adults struggling can be helpful as well. plore this issue, by giving the teenager per- one option. I know an adolescent boy with with issues of achieving independence. Dr. mission and encouragement to fail at things, Asperger’s who literally could not take Sandler has offices in Spectrum Services, Encourage independence whenever possi- as they try and figure out who they are, and himself away from his ipad. It provided located in midtown Manhattan and Te- ble - Even though there may be some real what they are good at. I often give fami- him with security that he felt he could not aneck, New Jersey. She can be reached at difficulties in social skills and independent lies homework that as they sit down around give up. After being threatened by his par- [email protected]. life skills, I think it is important to challenge the dinner table they all have to share an ents that they would take it away altogeth- adolescents to be independent, at whatev- example of something they failed at during er, he created a contract between himself, References er their level. I always tell parents that the the day. This allows the adolescent with me, and his parents, that outlined appropri- goal is to create a gap that is wide enough Asperger’s to experience their challenges ate parameters of the use of his ipad. We Hamman, D. & Hendricks, C. (2005). The for the child to stretch to step over, without in a universal way, and learn to persevere talked through the pros and cons of each of role of the generations in identity forma- falling into a chasm. It may be difficult to despite facing very real challenges. the clauses until he, I, and his parents were tion: Erikson speaks to teachers of adoles- teach a teenager with Asperger’s to do laun- satisfied with the terms and compromises cents. The Clearing House; 79: 72-75 dry, help with the dishes, drive a car, take Find an area where the child can shine - regarding when he could use the device. public transportation into the city, or set up Individuals with Asperger’s tend to have Rather than have us tell him what to do, in Volkmar, F.R., Klin, A., Schultz, R.T., Ru- a sleepover with a friend or family member, an area of stereotyped interest that they which case he may feel forced and end up bin, E., & Bronen, R. (2000). Clinical case but it will be more worthwhile to expend the can spend hours reading and talking about. rebelling, we gave him the power to exer- conference: Asperger’s disorder. The Amer- effort in teaching him or her how to do these Perhaps the child can get involved in a club cise his own initiative in this regard, which ican Journal of Psychiatry; 157: 262-267. AUTISM SPECTRUM NEWS ~ SUMMER 2014 www.mhnews-autism.org PAGE 25

Remember the Kayak his shirt untucked anyway.) As we pulled into the lake house, we gave the talk; the instructions for the day. arrie Cariello and her husband, Keep quiet during the ceremony, do not Joe, live in New Hampshire. The touch the bride or her dress, and no fingers have five children; four boys and on the cake. one girl. Their second son, Jack, We did not, however, have the prudence Chas autism. (No, their daughter, Rose, is - the foresight - to warn about a kayak. not the youngest. The youngest is Henry, a (Note: this is called foreshadowing. It’s child born nine months after the urologist meant to keep you excited and engaged canceled Joe’s appointment.) throughout my narrative.) “Saturday. Saturday is Miss Jennifer’s Jack’s been really tough for us lately. I’m wedding.” not even sure how to describe his behavior. “I know Jack,” I said. “It’s going to be He’s impulsive and determined and a little on a lake so we have to be extra careful—” belligerent. He has this new independent “She is a favorite person. To me.” streak going on, but not a lot of judgment Usually when people say they want our to temper it. five to come to formal events, I smile and Basically, he’s a 10-year old boy with shrug my shoulders and say politely, “Re- autism. ally, don’t feel pressure to invite them. It’s And he tends to look, well, how shall I okay.” But inside I’m shrieking, “Are you put it? He looks very special in these sit- crazy? WHY WOULD YOU DO THAT?!” uations. I feel bad saying that but it’s true. If we do get invited to a wedding en Jack with Jennifer on her wedding day Those of you with non-special children masse, I try to make excuses as to why the may find that inappropriate, and those of kids can’t make it. “Oh, they’re all busy! ple, and right away she started to babysit I always want us to look together for you with special kiddos in your life may be Baseball and soccer and stuff. Henry joined for us. She cleaned up messes and helped these things. I bought the matching plaid offended, but I don’t know any other way the Peace Corps so he’ll be abroad. But put potty train Henry and read The Chocolate shirts and we combed the matching hair, to describe it. Joe and I down for the tenderloin. And what Surprise during her weekly visits. She was but somehow, someway, on the ride there, For one thing, he can’t seem to control kind of cake are you going to have?” amazing, and eventually, Joe stole her to the hair started to stick up in weird places his body. The excitement of the day takes But this time, I made an exception, be- work at his office. and the plaid shirts crumpled and untucked. over; so much to touch and see and smell cause Miss Jennifer was getting married. But she remains a special part of our (Except for five-year old Henry. His We met her six years ago at Picture Peo- family, especially for our son Jack. pants wouldn’t button so we had to leave see Kayak on page 32 PAGE 26 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SUMMER 2014

Challenges from page 8 of ASD alone will not suffice. er behavioral supports. Teams need time and generalization of skills. Training is a School teams in a situation like this case to not only gather new ideas but to plan necessary ongoing process in order to in- core symptoms of ASD within the scope are faced with a number of challenges. and work through how interventions will crease instructional staff’s knowledge and of the educational professionals’ practice. They are responsible for building skills look in a typical school situation. They can skills in ASD as well as comorbid condi- These cases become complicated when that are required for success in school in- also benefit by ongoing collaboration with tions. School teams do need to remember more than one disorder is creating adverse cluding organization, self-advocacy, stay- outside mental health professionals by re- that in most cases the ASD label does not educational impact and blur the lines of ing on task and avoiding distractions in viewing their strategies and considering adequately explain the intricacies of each what educational professionals can address. order to be engaged with academics. They how they could inform their approach in child or youth, and to remain open to oth- For example, consider the dilemma a are also responsible for addressing the so- the school setting. Districts can and should er factors including mental health needs school team finds themselves in with the cial-emotional needs that this young man support their instructional staff in ASD when engaging in educational planning following scenario. A teenager diagnosed brings to the table. The outside mental issues by including content covering the and service delivery. with ASD presents with multiple challenges health providers are addressing his cutting common comorbidities and their manifes- that create a barrier to successfully access- and internalizing behaviors both therapeu- tations in children and youth as an ongoing Vanessa Tucker, PhD, BCBA-D, is Assis- ing the general education curriculum. He tically and medically. School teams should component of professional development. tant Professor of Special Education at Pacific has a hard time getting in assignments due be encouraged, in situations like this, to Lutheran University. For more information, to disorganization, will often day dream in develop a collaborative relationship with Discussion please contact Dr. Tucker at [email protected]. class, does not seek out the help of his in- the child’s outside therapists in order to de- structors and seeks his smart phone video velop a coordinated approach. This might ASD as a disability category and area References game apps at any opportunity. His grades involve securing permission to share in- of special education is unfortunately not have plummeted, engagement has dropped formation, meeting to exchange treatment a neatly wrapped box into which we can American Psychiatric Association. (2013). significantly and everyone is struggling to plans, developing an understanding of place all children and youth. The needs Diagnostic and Statistical Manual of Men- compete with the reinforcement the phone therapeutic approaches and implementing of this population are highly variable and tal Disorders. (5th Ed.). Arlington, VA: provides in all subjects. Complicating this generalizable strategies as appropriate. For confounded by the presence of comorbid- American Psychiatric Publishing. scenario is the fact that this teenager is di- example if the therapist is working on de- ities. School teams are in a position of de- agnosed with Bipolar disorder and presents veloping approaches for him to use when cision making when evaluating and find- Individuals With Disabilities Education with the behavior of cutting, specifically he feels like cutting, the school team can, ing children and youth eligible for special Act, 20 U.S.C. § 1400 (2004). to his arms, chest and legs. This youth re- as appropriate, implement similar strate- education under IDEA. They may strug- cruits attention from peers by showing the gies, cues and prompts in the school set- gle when determining eligibility based Hanson, E., Cerban, B.M., Slater, C.M., Cac- wounds in social settings. As school pres- ting. Outside therapeutic and medical in- upon the categorical nature of the process. camo, L.M., Bacic, J. & Chan, E. (2013). Brief sures mount the team notes that he engages formation can and should be a part of this School teams are counseled to consider report: Prevalence of attention deficit/hyperac- in more cutting behavior as well as demon- child’s functional behavior assessment, a best fit approach in order to create eli- tivity disorder among individuals with autism strating more emotional variability in the behavior intervention plan and possibly gibility, to consider the MD category if spectrum disorder. Journal of Autism and De- school setting. He receives outside therapy as part of a health care plan if side effects needed and available, and to expand upon velopmental Disorders, 43 (6), 1459-1464. to address cutting behavior as well as anx- from medications are an issue. Ongoing the child’s needs accurately within the IEP iety and depression. This therapy is cogni- communication with all parties can assist paperwork and plans. In other words, the Mannion, A. & Leader, G. (2014). Comor- tive-behavioral in nature and is delivered with generalization as well as sharing of category should not limit the team from bidity in autism spectrum disorder: A liter- in tandem with medication interventions progress (or lack of) with the interventions addressing all areas of need within the IEP ature review. Research in Autism Spectrum from a psychiatrist. In this complicated that are put in place. and behavior plans. School teams will find Disorders, 7 (12), 1595-1616. case there are multiple confounds and is- School teams can benefit from specif- that interventions designed for children sues to work through—not all of which can ic training to address prevention and in- and youth with ASDs may not be sufficient Mannion, A., Leader, G., & Healy, O. (2014). be attributed solely to ASD. In this case the tervention strategies for ASDs as well as for dealing with mental health issues that An investigation of comorbid psychological dis- youth has mental health needs which also comorbid mental health conditions. This are commonly found in this population. orders, sleep problems, gastrointestinal symp- adversely impact his education and access training may include reviewing or learning Collaboration with outside agency profes- toms and epilepsy in children and adolescents to the general education curriculum. An ap- specific hallmarks of the disorders, preven- sionals is critical to creating a coordinated with Autism Spectrum Disorder. Research in proach designed to address his core deficits tion tactics, intervention strategies and oth- approach that can improve service delivery Autism Spectrum Disorders, 7 (1). 35-42.

Student-Centered from page 9 idence through observations of an activity Would you drive in a car only using the we care so much. I’m just not sure there or through interactions with the learners. rear-view mirror? is anything to purchase. Shifting the focus learn as opposed to what they will produce, However, there are two important points We need to look ahead, to be alert, pre- to looking for strengths, concentrating on which is often where teachers are tempted about evidence. First, whatever method a pared, and ready to act. A strong home- soft-skills such as positive attitude, cu- to start. To achieve maximum transparen- teacher uses would yield information that school allegiance connects the child’s be- riosity, following the rules, honesty, and cy and buy-in for learners, we share the is actionable by their students. Second, ev- havioral and academic school work with self-direction to name a few and aligning learning goal, or actively create it with the idence collection is a systematic process their interests in and concerns for the home with families may be the key. child, at the beginning of the lesson. This and should be a constant stream tied to a and community. Working with the family Once the changes are implemented the especially holds true when dealing with progress indicator. Of course, it must be develops an understanding of the world they cycle begins. This is what professional de- teaching appropriate behavioral skills or said that when those unplanned, sponta- live in. The real-world allows for learning velopment is all about. To learn to teach the social interactions. In addition, the indica- neous moments occur that give an indica- what is most important or what really makes skills that will lead to greater independence tors of progress toward the learning goal tion of where the learner is in relation to the most sense based on practical real-life and a higher quality of life for each of our are determined in collaboration with the the lesson goal – it is evidence of growth! needs and the implementation of common students by enabling them to be successful. child. These indicators serve as signposts Building on this model, depending on core standards across different environ- It is a cycle of action and reflection. for both teachers and learners regarding the child’s developmental level, more or ments. We look to experience a steady and progress and provide stress reduction. less directives by the teacher may be re- purposeful progression from one level to Vicki Ofmani, MEd, LDT-C, is Supervi- Within this trusting environment, clar- quired. The goal, however, is always to the next in all areas: Academics; Behavior- sor/SLE Coordinator at The Forum School, ity about goals and indicators are certain strive for independence and learner gen- al Growth; Life Skills; Recreational Skills; located in Waldwick, NJ. She is also a Mem- and teachers gather evidence of emergent eralization. As a means towards this end, Communication and Social Interactions. ber of the Board of Trustees for The Daniel learning. There is no single way to col- positive models and ample time for growth Educators frequently are looking for Jordan Fiddle Foundation in Ridgewood, lect formative evidence because forma- and achievement to occur must be provid- “the” new strategy, a shiny “new” material, NJ. For more information, please vis- tive assessment is not a specific kind of ed, along with a positive allegiance be- or “solutions in a box” to improve learn- it www.theforumschool.com or email Vicki test. For example, teachers can gather ev- tween school and home. ing for the students with ASD for whom at [email protected].

SAP from page 16 who attended - from Senators Casey and was able to set his goal for his year-long Philadelphia, The Arc of Philadelphia and Toomey’s offices, to state senators and term as promoting the hiring of people SpArc Services, the family of organizations employees volunteered to participate that state representatives. with disabilities. which offers programs and services to the executives were overwhelmed. Governor Jack Markell of Delaware, And Governor Markell, as well as most of adults with intellectual and developmental “Jobs” is the magic word these days, and where Specialisterne is now based, gave the other speakers, insisted that the hiring of disabilities in the Philadelphia region. She The Arc of Philadelphia is working with an inspiring speech at the opening of the people on the autism spectrum is good busi- hosts a weekly radio show, “The Market- the right companies and programs to make day-long launch. Perhaps most important ness sense and not “charity.” He urged that ing of Business,” as well as a weekly lo- sure this happens. Government agencies was the fact that Governor Markell called hiring people with nontraditional skills be cal cable access television interview show, and officials are also very excited about the Autism at Work initiative at SAP an part of the overall workforce development “Bonnie’s Beat” at Radnor Studio 21. She the program and participated in the May “employee-powered movement” - not just initiative. Bravo to him and to SAP! can be reached at her website, www.bon- 1 event at SAP. You knew how important from the top down. He also talked regard- niesquires.com. The Arc of Philadelphia this initiative must be when you saw the ing the best thing about having served as Bonnie Squires is a communications and can be reached at 215-229-4550 and the list of representatives of elected officials chair of the Council of Governors, when he government relations consultant for SpArc website www.sparcphilly.org. AUTISM SPECTRUM NEWS ~ SUMMER 2014 www.mhnews-autism.org PAGE 27

Co-Occurring from page 14 the lower prevalence of psychotic illness, Russell Tobe, MD, is a board-certified disorders. Am J Psychiatry 169: 292-299. individuals with ASD can experience psy- child and adolescent psychiatrist and a behaviors have demonstrated mixed re- chotic illness; further, several genetic loci board-certified adult psychiatrist. He is Di- Kanner, L. (1943). Autistic disturbances of sults in symptom improvement (Hollander, associated with ASD (such as 22q11) have rector of Outpatient Research at the Nathan affective contact. Nervous Child, 2, 217–250. 2012; King, 2009). also been associated with schizophrenia Kline Institute for Psychiatric Research, (Shishido, 2014). But, for now, the clini- Director of Psychiatric Services at ARC King, B.H., Hollander, E., Sikich, L., Mc- Other Common Co-occurring Disorders cal significance of these findings remains of Rockland, President of the West Hudson Cracken, J.T., Scahill, L., Bregman, J.D., unclear. Nonetheless, irrespective of diag- Psychiatric Society, and a faculty member Donnelly, C.L., Anagnostou, E., Dukes, Treatment of other common co-occurring nosis, principle pharmacologic treatment at Columbia University and New York Uni- K., Sullivan, L., Hirtz, D., Wagner, A., disorders has been less studied rigorously of psychotic symptoms includes the neuro- versity. Correspondence may be addressed Ritz, L., STAART Psychopharmacology in treatment trials. Major Depressive Dis- leptic class of medications. This medication to Dr. Tobe at [email protected]. Network: Lack of efficacy of citalopram order and subclinical depressive symptoms class also includes the only two medications in children with autism spectrum disorders in ASD are estimated to occur in approxi- approved by the Food and Drug Adminis- References and high levels of repetitive behaviors. mately 10% and 24%, respectively. Rates tration for any use in ASD (albeit for the Arch Gen Psychiatry 2009; 66:583–590 of specific phobia vary between 30-45%. specific indication of treatment of irritabili- American Psychiatric Association. (2000). Individuals with ASDs may have other anx- ty and aggression associated with ASD). Diagnostic and statistical manual of mental Klykylo W.M. and Kay. J. (2012) Clinical iety disorders such as generalized anxiety disorders (4th ed.). Arlington, VA: Ameri- Child Psychiatry. West Sussex, UK: John disorder and separation anxiety, at rates in In summary, ASD represents a broad can Psychiatric Publishing. Wiley and Sons, Ltd. pp.353-376. the range of 3 to 12% (Leyfer, 2006). Given phenotype that can vary along numerous the paucity of research on pharmacologic dimensions (functional, cognitive, social, American Psychiatric Association. (2013). Leyfer, O.T., Folstein, S.E., Bacalman, S., treatment of these disorders within the con- etc.). There are also broad inter-individu- Diagnostic and statistical manual of mental Davis, N.O., Dinh, E., Morgan, J., Tag- text of ASD, careful consideration of risks al differences in the types of co-occurring disorders (5th ed.). Arlington, VA: Ameri- er-Flusberg, H., and Lainhart, J. 2006. Co- and benefits of medication use should be symptoms and disorders. While as many as can Psychiatric Publishing. morbid Psychiatric Disorders in Children considered along with clear plans for mea- 70% of individuals may have comorbidity with Autism: Interview Development and suring treatment progress and side effects. with their ASD (Lefyer, 2006), the ways Hanson, E., Cerban, B., Slater, C., Cac- Rates of Disorders. J Autism Dev Disord in which these co-occurring disorders are camo, L., Bacic, J., and Chan, E. (2013). 36: 849-891. Psychotic Illness diagnosed and the populations of individ- Brief Report: Prevalence of Attention Defi- uals with ASD in which they are studied cit/Hyperactivity Disorder Among Individ- RUPP. (2005). Randomized, controlled, Psychotic illnesses, such as schizophre- vary. Therefore, at the moment, it may be uals with an Autism Spectrum Disorder. J crossover trial of methylphenidate in perva- nia, are characterized by some level of a best for clinicians to apply the standard Autism Dev Disord (2013) 43: 1459-1464. sive developmental disorders with hyperac- loss of reality testing. Symptoms may also DSM-5 criteria to symptoms when they tivity. Arch Gen Psychiatry 62: 1266-1274. include, “hearing voices that others don’t appear and to then consider appropriate, Harferterkamp, M., Van De Loo-Neus, hear” (hallucinations) or strongly believing evidence-based treatments for disorders G., Minderaa, R.B., Van Der Gaag, R., Shishido, E., Aleksic, B., and Ozaki N. things to be true that are not (delusions). when the diagnostic criteria are met. If a Escobar, R., Schacht, A., Pamulapati, S., (2014). Copy-number variation in the patho- Clinicians who are unaccustomed to work- co-occurring disorder is identified, indi- Buitelaar, J., and Hoekstra, P.J. (2012). A genesis of autism spectrum disorder. Psychi- ing with individuals with ASD and are unfa- viduals with ASD are often more sensitive randomized double-blind study of atomox- atry and Clinical Neurosciences, 68: 85-95. miliar with developmental contributions to to medication side effects, may respond to etine versus placebo for ADHD symptoms their symptoms, particularly for those indi- lower doses of medication, and may do no in children with Autism Spectrum Disor- Volkmar, F., Siegel, M., Woodbury-Smith, viduals who also have intellectual disability, better or even worse at higher doses. Clear ders. JAACAP 51(7) 733-741 M., King, B., McCracken, J., State, M., may falsely characterize a developmentally pathways for measurement of treatment re- and the American Academy of Child and typical experience such as an imaginary sponse and side effects should be outlined Hollander, E., Soorya, L., Chaplin, W., An- Adolescent Psychiatry (AACAP) Com- friend or “self-talk” as symptoms of psy- prior to medication initiation and adhered agnostou, E., Taylor, B., Ferretti, C., Was- mittee on Quality Issues (CQI) (2014). chotic illness. Therefore caution is required to during treatment in order to assist in the serman, S., Swanson, E., and Settipani, B. Practice Parameter for the Assessment and when considering a diagnosis of psychosis ongoing assessment of benefit versus risk (2012). A Double-blind placebo-controlled Treatment of Children and Adolescents in the context of ASD. However, though ep- while minimizing the probability of esca- trial of fluoxetine for repetitive behaviors with Autism Spectrum Disorder. JAACAP, idemiologic data are mixed and limited by lating doses and polypharmacy. and global severity in adult autism spectrum 53(2): 237-257.

Adults from page 4 hood,” Mostofsky says. than twice as likely as controls to have de- that leads to social deficits. There may also be an underlying genet- pression, anxiety or bipolar disorder, and These individuals were diagnosed with au- treatment for Parkinson’s disease, and the re- ic overlap between autism and Parkinson’s to attempt suicide, the study found. They tism only after their dementia set in, he says. searchers referred two more for therapy. This disease, says Emanuel DiCicco-Bloom, pro- are also more likely to have diabetes, gas- “I think when you dig into these databases, is a possible prevalence of 3 in 20, which is fessor of neuroscience at the Robert Wood trointestinal disorders, epilepsy, sleep dis- you’re going to find all this crazy stuff.” much higher than the 1 in 1,000 rate of Parkin- Johnson Medical School at Rutgers Uni- orders and high blood pressure. son’s in the general population, notes Piven. versity in New Jersey. A family of chemical Interestingly, only the women with au- For more reports from the 2014 Inter- However, the results are preliminary, he messengers called monoamine neurotrans- tism have a higher chance of having im- national Meeting for Autism Research, cautions, and may be affected by the men’s mitters, which include serotonin and dopa- mune disorders than controls do. The rate please visit http://sfari.org/news-and- medical history. Drugs for epilepsy, which mine, are implicated in both disorders. of cancer is the about the same as in con- opinion/conference-news/2014/interna- commonly co-occurs with autism, can trols, despite the overlap between some au- tional-meeting-for-autism-research-2014. cause motor deterioration, for example. Health Registry tism and cancer genes. News and Opinion articles on SFARI.org Lord notes that many older adults with People with autism are also half as likely are editorially independent of the Simons autism have spent time in institutions, Piven and his colleagues are collecting as controls to use alcohol and to smoke, the Foundation. where they might have received strong detailed life histories for each of the partic- researchers found. “The smoking [finding] This article was originally published on courses of drugs. ipants, aiming to understand how the dis- is quite interesting,” says Lord. This may SFARI.org and is reprinted with permis- Motor deficits are also a common feature order manifests throughout a lifetime. In be because smoking and drinking are so- sion. You may view the original article, among children with autism, says Stewart contrast, Croen’s study began with medical cial activities and people with autism are published 17 May 2014, at http://sfari.org/ Mostofsky, director of the Laboratory for records to find and study a large number of less susceptible to peer pressure, she says. news-and-opinion/conference-news/2014/ Neurocognitive and Imaging Research adults with autism. She and her colleagues Although health registries are rich with international-meeting-for-autism-re- at the Kennedy Krieger Institute in Balti- found 2,108 adults with autism enrolled in information, Piven warns against relying search-2014/adults-with-autism-may- more, who was not involved in the study. Kaiser Permanente. solely on their diagnosis of autism, which have-high-burden-of-health-problems. Slow movement and rigid gait are more They compared these adults - about is based on insurance codes. When trying common than tremors, he says. 1,000 of them are over 30, and 300 are to find adults with autism in North Car- References “It’s certainly possible that at least some over 50 - with ten times as many controls olina, his team quickly found 20 people of these features were present for many, matched for age and sex. through a health registry — but later dis- 1: Mandell D.S. et al. Autism 16, 557-567 (2012) many years, and possibly even in child- Overall, the adults with autism are more covered that they had a form of dementia www.ncbi.nlm.nih.gov/pubmed/21846667

Behavioral from page 15 clinical expertise from providers like Pa- quality protocols and dedicated care that Having a frustrating experience at the cific Child and Family Associates helps those with ASD need. doctor doesn’t have to be the reality for Establishing clinical decision protocols families identify the right treatment plan Until those protocols are in place, families families dealing with ASD. for systematically examining the causes of for each individual. Better yet, they accept need to be proactive. Be prepared to hear common presentations is essential. With insurance plans that help both financially that a child’s issues are related to ASD, and For more information about Pacific protocols in place, physicians can be em- and emotionally for the family, while giv- not a medical condition. Fuel yourself with Child and Family Associates, please vis- powered to assist families and discover the ing peace of mind in knowing that individ- questions about what could be the cause, it http://pacificchildandfamily.com, email true causes of these disturbances. Enlisting uals and families are receiving the highest and continue to be your child’s advocate. [email protected], or call (855) 295-3276. PAGE 28 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SUMMER 2014

Bipolar Disorder from page 23 the side effects they’re experiencing. children, while improving family interac- medical practitioners in their regions. Studies suggest that anti-seizure, tions and access to appropriate healthcare. This article was originally pub- say the same teenager abruptly started go- mood-stabilizing medications such as val- If you or your child has autism and you’re lished on autismspeaks.org and is re- ing without sleep for days in a row, while proic acid may be a safer treatment for concerned that it may be complicated by a printed with permission. You may view having more tantrums than usual. This may those with autism. We’ve also seen success mood disorder such as bipolar disorder, we the original article, published May represent a true manic episode. with a combination of a mood-stabilizing recommend that you seek assessment from 22, 2014, at www.autismspeaks.org/ Not surprisingly, the symptoms of bi- medicine and a low dose of an antipsychot- a mental health provider with experience blog/2014/05/22/mental-health-aware- polar disorder in someone with autism are ic medication. The atypical antipsychot- in autism spectrum disorders and co-occur- ness-month-autism-and-bipolar-disorder. likely to look different than they would in ics risperidone and aripiprazole are both ring psychiatric disorders. Jessica Hellings, MD, is a General, others. They commonly include “pressured FDA-approved to treat irritability in chil- Child and Adolescent Psychologist at speech” (rapid, loud and virtually nonstop dren with autism ages 6 and older. Howev- Editor’s note: Specialists working the Research Unit on Pediatric Psycho- talking), constant pacing, an abrupt de- er both tend to produce significant weight within Autism Speaks Autism Treatment pharmacology and is Director of the OSU crease in sleep and increased impulsivity gain and diabetes risk. Therefore, their use Network (www.autismspeaks.org/science/ Nisonger Neurodevelopmental Psychiatry leading to aggression. requires close monitoring. (For further resources-programs/autism-treatment-net- Study clinic. Andrea Witwer, PhD, is a psy- Psychiatrists often prescribe psychoactive guidance, please see our recent blog on work/tools-you-can-use/visual-supports) are chologist and assistant professor of clini- medications to treat bipolar disorder. Lithi- “Behavioral Medication Side Effects2.”) dedicated to combining cutting-edge research cal psychiatry and psychology at The Ohio um is one of the most common treatments. In addition to medication, researchers at with the delivery of comprehensive “whole State University Nisonger Center. Unfortunately, lithium often produces sig- our ATN center (Ohio State and Nation- person” care for children and teenagers with nificant side effects. They can include thirst, wide Children’s Hospital) are evaluating autism. To find the ATN center nearest you, References excessive drinking and bed wetting, shaky a family treatment intervention that com- please visit www.autismspeaks.org/science/ hands and even life-threatening toxicity. bines education and psychotherapy to help resources-programs/autism-treatment-net- 1) http://link.springer.com/article/10.1007 This is of particular concern with individ- individuals with autism and mood disor- work/where-can-i-find-atn-location. ATN %2Fs10882-010-9194-0?LI=true uals who have communication difficulties, ders. Early results suggest that this type clinicians are also dedicated to sharing their 2) www.autismspeaks.org/blog/2013/03/01/ as they may not be able to alert caregivers to of intervention decreases mood severity in autism expertise with pediatricians and other behavioral-medication-side-effects

Obsessions from page 24 Alex can see? “Very unhappy with you,” he says. climbs into that bus. Even then, how will Moreover, what happens if he does this Jill stays home with him. At my desk at I avoid thinking, What about the next day? to the lobby where we sit to wait for the bus. again tomorrow? The next day? For the work, I keep thinking how he’s home but if All I can do is hope he just gets better. “It is the intensity and duration of a per- rest of his life? It’s a peek at living with I call to see how he is, no illness is the ene- (On Thursday morning Alex goes to school son’s interest in a particular topic, object an autistic adult who doesn’t, when you my this time. I don’t call. Instead I rehearse as if nothing happened. On Friday morning, or collection that marks it out as an obses- get right down to it, have to do a thing he what I’ll say to him tonight: And you’re go- he again refuses to go anywhere near our sion,” another Autism Speaks article adds. doesn’t want to. Nobody can live like this. ing to school tomorrow, aren’t you? … And front door without a plastic animal. He says Find it tomorrow, mom will look all day, “We’re very unhappy with you, Alex,” we tomorrow, school ... The bus is coming in it’s a chicken but it’s really a rooster.) time for school when he snaps, “Aw eleva- say. “Very unhappy.” the morning and you’re getting on it. tor!” and he’s up and off. He stares. “Tiger? iPad?” What will he reply? Repeat it back, which Jeff Stimpson’s two books are Alex: The Jill doesn’t seem surprised when we I haven’t lost that much sense as a par- for some stupid reason I still take to mean Fathering of a Preemie and Alex the Boy: come back through the front door. “Kind of ent. “There won’t be any iPad, Alex. If you agreement? Say, “I’m sorry, I’m sorry?” Episodes From a Family’s Life With Au- makes you want to die,” she says. Should stay home today you will clean your room, and pat my arm? Or just more “Tiger”? tism. His blog is http://jeffslife.tripod.com/ we scream and yell? Seek help? Who can do the laundry, wash the floor. We’re very No easing of my mind will come until alextheboy. Reach him at jeff_stimpson@ help Alex understand a connection only unhappy with you, Alex.” Thursday morning at 7:25 am when he yahoo.com and on Twitter @jeffslife.

PEERS from page 12 cial behavior long after the program has Karina G. Campos, PsyD, is Clinical Psy- Laugeson, E. A. & Frankel, F. (2010). Social ended (Frankel & Myatt, 2003; Schohl et chologist and Assistant Professor of Child and skills for teenagers with developmental and au- tism spectrum disorders: The PEERS treatment adulthood and across the lifespan and may, al., 2014). Research has also revealed that Adolescent Psychiatry at the NYU Langone manual. New York, NY: Routledge. in fact, represent a more chronic feature of PEERS participants demonstrated signif- Medical Center and NYU Child Study Center. ASD (Orsmond, Krauss & Seltzer, 2004), icant improvements in their knowledge of If you are interested in learning more about Laugeson, E. A., Frankel, F., Mogil, C. & Dillion, it is key that intervention aims to improve social skills, including, for example, an Autism Spectrum Disorder Clinical and Re- A. R. (2009). Parent-assisted social skills training social functioning during these formative overall growth in their frequency of hosting search Program, including PEERS, and other to improve friendships in adolescents with autism spectrum disorders. Journal of Autism and Devel- years prior to adulthood. get-togethers with friends (Laugeson et al., our programs, please contact our Intake De- opmental Disorders, 39(4), 596-606. Commencing this fall, NYU Child Study 2009). A recent replication study of PEERS partment at (646) 754-5000 or by email at: Center intends to address these issues by has shown that PEERS further improves [email protected]. You can also contact Mandelberg, J., Laugeson, E. A., Cunningham, offering the Program for the Education and co-morbid conditions, such as social anxi- Dr. Karina G. Campos, directly at (646) 754- T. D., Ellingsen, R., Bates, S. & Frankel, F. Enrichment of Relational Skills (PEERS; ety (Schohl et al., 2014). 4876 or at [email protected]. (2014). Long-term treatment outcomes for par- ent-assisted social skills training for adolescents Laugeson et al., 2009; Laugeson & Fran- PEERS lasts 14 weeks with weekly with autism spectrum disorders: The UCLA kel, 2010). UCLA developed PEERS over sessions that run 90 minutes each. The References PEERS program. Journal of Mental Health Re- the last few years as an evidence-based PEERS curriculum is taught in a small Bauminger, N. & Kasari, C. (2000). Loneliness search in Intellectual Disabilities, 7, 45-73. social skills group intervention for adoles- group format using a variety of evidence and friendship in high-functioning children with cents presenting with higher functioning based methods, including didactic instruc- autism. Child Development, 71(2), 447-456. Mitchell, K., Regehr, K., Reaume, J. & Feldman, M. (2010). Group social skills training for ado- ASD. An adaptation of Frankel and Myatt’s tion, modeling of appropriate social skills, Frankel, F. & Myatt, R. (2003). Children’s friend- lescents with asperger syndrome or high func- (2003) elementary school-aged evidence coaching and feedback regarding the use ship training. New York: Brunner-Routledge. tioning autism. Journal of Developmental Dis- based Children’s Friendship Training Pro- of newly learned social skills and week- abilities, 16(2), 52-63. gram (CFT), UCLA’s program has pro- ly homework assignments completed by Grynszpan, O., Nadel, J., Constant, J., Le Barilli- duced promising treatment results and lon- participations with the support and guid- er, F., Carbonell, N., Simonin, J., et al., (2011). A Orsmond, G. I., Krauss, M.W. & Seltzer, M. M. (2004). Peer relationships and social and recre- ger-term gains post treatment. The program ance of their parents (Laugeson & Fran- new virtual environment paradigm for high-func- tioning autism intended to help attentional disen- ational activities among adolescents and adults is unique, not only in light of its strong ev- kel, 2010). A variety of pertinent topics are gagement in a social context. Journal of Physical with autism. Journal of Autism and Developmen- idence base and maintenance of gains over reviewed as part of the program, such as Therapy Education, 25(1), 42-47. tal Disorders, 34, 245-256. time (Mandelberg et al., 2014), but mostly, teaching adolescents how they can choose perhaps, because it incorporates structured appropriate friends and discover common Klin, A. & Volkmar, F. R. (2003). Asperger syn- Schohl, K. A., Van Hecke, A. V., Carson, A. drome. New York, NY: Guilford Press. M., Dolan, B., Karst, J. & Stevens, S. (2014). parent involvement concurrently alongside interests by exchanging information and A replication and extension of the PEERS inter- the participation of adolescents. As research using appropriate conversation skills, and Krasney, L. Williams, B. J., Provencal, S. & Ozo- vention: Examining the effects on social skills shows, parents significantly impact their how they can more effectively manage noff, S. (2003). Social skills interventions for and social anxiety in adolescents with autism child’s relationships, yet few programs conflict with friends as well as experi- the autism spectrum: Essential ingredients and a spectrum disorders. Journal of Autism and De- have actively included them in the child’s ences of rejection, teasing and bullying model curriculum. Child and Adolescent Psychi- velopmental Disorders, 44(3), 532-545. atric Clinics of North America, 12(1), 107-122. process (Schohl et al., 2014). Research, in- (Laugeson & Frankel, 2010). Later mod- Sicile-Kira, C. & Sicile-Kira, J. (2012). A full cluding PEERS, indicates that parents’ en- ifications to the program include training Laugeson, E. A., Ellingsen, R., Sanderson, J., life of autism: From learning to forming re- gaged and consistent involvement in treat- in: the appropriate use of social media and Tucci, L., & Bates, S. (2014). The ABC’s of lationships to achieving independence. New ment assists adolescents in making longer online safety, and engaging others through teaching social skills to adolescents with autism York, NY: St. Martin’s Press. spectrum disorder in the classroom: The UCLA lasting and meaningful gains. By equipping suitable humor and learning-strategies for PEERS program. Journal of Autism and Devel- Tse, J., Strulovitch, J., Tagalakis, V., Meng, L. parents with greater knowledge concerning handling rumors and gossip (Laugeson, opmental Disorders. & Fombonne, E. (2007). Social skills training the trials their child faces, they can learn to Frankel, Gantman, Dillion & Mogil, 2011). for adolescents with asperger’s syndrome and socially coach their child by helping him/ PEERS has also been expanded to provide Laugeson, E. A., Frankel, F., Gantman, A., Dil- high functioning autism. Journal of Autism and her locate appropriate friendship networks social skills intervention to young adults lon, A. R. & Mogil, C. (2012). Evidence-based Developmental Disorders, 37, 1960-1968. social skills training for adolescents with au- and employ the skills he/she develops in and teachers have directly incorporated it tism spectrum disorders: The UCLA PEERS Weiss, M. J. & Harris, L. S. (2001). Teaching groups in the outside world; parents can in their classrooms (Laugeson, Ellingsen, Program. Journal of Autism and Developmental social skills to people with autism. Behavior also model and supervise appropriate so- Sanderson, Tucci & Bates, 2014). Disorders, 42(6), 1025-1036. Modification, 25(5), 785-802. AUTISM SPECTRUM NEWS ~ SUMMER 2014 www.mhnews-autism.org PAGE 29

Technology from page 21 therapy or to any therapy services at all. specialists are working with the child. I who works with one of my tele-therapy cli- Tele-therapy allows me to check data re- also include a heavy dosage of parent ed- ents knows, for example, that she learned Technology is the Key to al-time, see skill acquisition through video ucation. Finally, I ask the parents to video the word “cat” through GemIIni’s videos. Collaboration and Better Results clips and Skype sessions, and communi- the child in various situations and share This is crucial for generalization. We want cate with all team members essentially at those files via Dropbox. to make sure that the client not only says I don’t think anyone doubts that technol- one time. Again, this does not at all replace Once I have determined the best course “cat” when she sees the picture of a cat on ogy will play a growing role in treatment in-vivo therapy, it just enhances that time of action, I use technology to provide a the computer screen, but that she says “cat” as we learn to harness our clients’ natural between the individual with exceptionali- blend of interventions and often work di- when she sees a real cat in her environment. attraction to screen-based technology. But ties and his or her therapist. rectly with the child or watch her doing When we all use the same tool - parents, we should not overlook the power of tech- Tele-therapy is not as hard as it sounds. various activities with her parents. In the babysitters, teachers, therapists - we are all nology to dramatically improve the ease I use a combination of several online prod- past, I have often wished I could be a “fly on the same page and we all provide mul- and efficiency of providing treatment to ucts: Skype (a video conferencing tool), on the wall,” and with Skype I can be just tiple learning opportunities throughout the children nor its use as a collaborative tool. Dropbox (a file sharing tool), and GemIIni that—the child often forgets that I am day for her to work on her new skills. (an online library of video modeling tools). there. I get to observe much more natural Collaboration with tele-therapy - I work in It may sound complicated, but the power interactions than I have been privileged to Conclusion the Pacific Northwest. In many rural areas, of tools such as those three used together see in the past. there are literally no specialists available to have benefitted all of my clients, regard- Finally, after a tele-therapy session, for If we are to continue to strive for success parents. I also get calls from parents in oth- less of their access to services in the area. many of my clients I go online to create a in the future, it will be by working as a team er countries who cannot find well-trained With these types of technological tools, we customized video modeling homework ses- and becoming as efficient as possible in the therapists in their home countries. I have can overcome the geographic barriers to sion for the child from GemIIni’s online li- way we use our time and resources. The found tele-therapy to be the most effective care so many families currently face. brary of videos. This provides hours of clin- key to doing that will be collaboration and way to address these issues. It is an effi- To start, I conduct a full video-confer- ically appropriate therapy for the parents the effective use of technology. The more cient, cost-effective way to share informa- ence with the parents to get a full picture of and is a great primer for my next session. I embrace each, the better results I see. In tion and “observe” individuals more often the current therapy program, the home en- that spirit, I am happy to share my experi- than only with in-vivo sessions. Tele-ther- vironment and the child’s current skill set. Collaboration of community through tech- ences with any of you who have questions, apy addresses the access issues many fami- I then spend time speaking with the child nology - While working so heavily with and I am eager to hear what new technolo- lies contend with today, especially with the (when possible) to get a clinical determi- online tools, I have come to see how tech- gies have helped you provide more focused rising number of diagnoses and the lack nation of the issues we will be addressing. nology has become such a powerful tool for and efficient care for your clients. You can of access in many regions to high quality I speak with whatever other educators or collaboration and data collection. Everyone reach me at [email protected].

Grant Recipients from page 4 els, language development, vocational training evaluation, imaging, and treat- The following students were selected for summer 2014 funding: Autism and Phelan McDermid Syndrome ment disparity. “It’s critically important to develop the next generation of autism Student: University: Mentor: Goal: Characterize the clinical features of scientists and to provide early training to Andrea Chu Boston University Dr. Helen Tager-Flusberg Phelan McDermid Syndrome compared to highly promising young scientists” said Jordan Doman University of Pittsburgh Dr. Carla Mazefsky idiopathic autism; provide autism-inten- ASF president Alison Singer. “This was an Molly Johnson University of Pennsylvania Dr. David Mandell sive training to medical school students extremely impressive group of applicants to build a pipeline of knowledgeable, au- and we are proud to be able to support so Veronica Kang University of Washington, Seattle Dr. Sara Jane Webb tism-friendly physicians many outstanding young researchers.” Cynthia Peng Rutgers University Dr. Emanuel DiCicco-Bloom “We developed this new funding mech- Jonathan Raduazzo Harvard University Dr. Christopher Cowan Donghui Wei/Dr. Daniele Piomelli: anism so that ASF could help encourage Nicholas Ray San Diego State University Dr. Inna Fishman University of California, Irvine the brightest young scientists to pursue Sam Tomlinson Yale University Dr. James McPartland a career in autism research” said ASF Endocannabinod Enhancement of Socia- co-founder Karen London. “These students Michelle Won University of Notre Dame Dr. Joshua Diehl bility in Autism-related Mouse Models are paired with well-established mentors and will work on promising projects that early career awards, treatment grants, un- port autism research by providing funding to Goal: Develop and test novel therapies for ASD will give them exceptional ‘hands-on’ ex- dergraduate summer research funding, re- scientists and organizations conducting au- perience and pave the way to their own au- search enhancement mini-grants and travel tism research. ASF also provides information Undergraduate Summer Research Grants tism research careers.” scholarships to enable stakeholders to at- about autism to the general public and serves In its five years of operations, the Au- tend the annual International Meeting for to increase awareness of autism spectrum dis- Nine undergraduate research grants will tism Science Foundation has funded over Autism Research (IMFAR). orders and the needs of individuals and fami- be awarded to highly-accomplished under- $1.6 million in grants including pre and lies affected by autism. To learn more about the graduate student/mentor teams conducting postdoctoral fellowships, medical school The Autism Science Foundation (ASF) is a Autism Science Foundation or to make a do- research in autism genetics, animal mod- gap year research fellowships, 3-year 501(c) (3) public charity. Its mission is to sup- nation visit www.autismsciencefoundation.org.

Insurance from page 22 complaints through state’s regulatory author- Age Old Limit Actuarial Equivalent from Wakely Consulting ity, take their cases through litigation, or sim- communicated with the Colorado Division ply do without the necessary therapy. of Insurance that these numbers would rep- 0-8 years old $34,000 per year 550 visits per year* resent a 50%-70% reduction in services for Cari Brown’s son was diagnosed with Au- children with autism. After many months of 9-19 years old $12,000 per year 185 visits per year* (* each visit lasting 25 minutes) tism just after his second birthday. In order deliberation and several public hearings, the to prevent lost services during the ACA con- Colorado Division of Insurance announced version, Cari started a grassroots movement that they were halting the rule making pro- of the $34,000/550 visit minimum required health insurance design and regulation.” in Colorado. For more information, she can cess until a new study could be ordered. by Regulation 4-2-47.” Thrasher elaborated further by saying, be reached at [email protected] or While nothing in HB 13-1266 allowed “a “The text of the law excludes the possibil- www.celebratesmallstuff.blogspot.com. carrier to reduce benefits provided for au- “Dollar Value” Limits ity of converting dollar amount caps into tism spectrum disorders if a health benefit non-dollar frequency caps because both References plan already provides coverage,” the Colo- It’s being argued by many that any ac- limit the ‘dollar value of benefit.’ In fact, rado Division of Insurance issued bulletin B tuarial equivalent is still in violation of the frequency limits are designed precisely to www.autismspeaks.org/advocacy/insurance/ 4.71 to provide further clarification. Specifi- ACA. In an article soon to be published in restrict the ‘dollar value of benefit’ as a cost affordable-care-act/states cally, B 4.71 stated, “Nothing in this bulletin the George Washington Law Review, au- saving measure. Additionally, allowing these or in Colorado Insurance Regulation 4-2-47 thor Matthew Thrasher states, “The text of limits defeats the purpose of the provision as www.cigna.com/assets/docs/about-cigna/in- prohibits a policyholder from requesting or the [ACA] clearly says that limitations on it does not protect patients or improve the formed-on-reform/top-10-ehb-by-state.pdf receiving additional ABA therapy above the the ‘dollar value of benefits’ are prohibited. quality of the insurance purchased.” $34,000/550 visit minimum from a carrier. [The ACA] does not say ‘dollar amount’ or Of course while the Colorado Division of www.leg.state.co.us/clics/clics2013a/csl.nsf/ This bulletin and Colorado Insurance Regu- simply ‘dollar limit’ of benefits. The word Insurance has been careful to explain that any billcontainers/2FF83C17083A577887257AEE- lation 4-2-47 should not be construed as the ‘value’ means: ‘the amount of money some- actuarial equivalent will be a minimum level 005AB558/$FILE/1266_enr.pdf Division taking a position regarding wheth- thing is worth’ or the ‘usefulness or impor- of treatment required, it is known by families er federal law requires carriers to cover tance’ of a thing. This concept of determin- that insurers will treat these as maximums. www.centerforautism.com/data/sites/1/press/ medically necessary ABA therapy in excess ing the ‘dollar value of a benefit’ is key in From there, families will have to appeal, file Affordable_Care_Act_by_state.pdf PAGE 30 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SUMMER 2014

Diagnosis from page 17 food. Because of his childhood, he became As the DSM-5 states, the descriptions BA, AC, QMHP, is Programs Director of an adult with social issues and weight con- are “essential to improve understanding, GRASP. GRASP is a 503c3 non-profit or- making a significant amount of subtle cerns. This led to his psychological evalu- reduce stigma, and advance the treatment ganization dedicated to improving and en- noise to create upset within the group. ation determining his diagnoses. Although and eventual cures for these conditions” riching the lives of adults and adolescents He also repeatedly disobeyed established “Bill” showed no signs of developmental (American Psychological Association, on the Autism Spectrum along with their group guidelines by attempting to dis- delay, rigid interests, self-stimulating be- 2013). But, as the previous examples il- families. For more information please visit cuss off-limits subjects, which he knew havior or other criteria, he was given an lustrate, due to overlapping symptomolo- our website, at www.grasp.org or contact would insight other members. Additional- Asperger’s Syndrome diagnosis due to the gy of diagnoses, an increasing number of us at [email protected]. ly, in each group he attended, he left ear- effects of his family system and overlap- individuals are not receiving the proper ly, prompting a facilitator to address his ping symptomology. treatment to assist them in leading more References escalating behavior. Knowing this behav- Lastly, “Bob,” age 31, attended our productive lives (Herbert, 2014). Where ior was occurring, his parents chose not groups and programs for approximately do we go from here? American Psychiatric Association, to remain onsite and were unreachable by one year. He had an Asperger’s Syndrome Although the current diagnostic manuals, (2013). Diagnostic and statistical manual phone. “John” is an example of an incor- diagnosis and presented with several sig- and by extension psychologists, clinicians, of mental health disorders: DSM-5 (5th rect diagnosis. Although he had awkward nificant physiological tics, speech im- and specialists, strive to provide a proper ed.). Washington, DC: American Psychiat- social interactions and intellectual learning pediments, and social issues. However, framework to understand and treat individ- ric Publishing. disabilities, his Schizo-Affective Disorder, he repeatedly lied to the Facilitators and uals facing challenges on a day-to-day ba- his living situation, and his family dynam- members and had inconsistent physical is- sis, if we continue to diagnose symptoms, Asperger, H. (1944). Die autischen psycho- ics were creating the appearance of ASD sues, meaning the issues varied occurring we may be missing valuable information pathen im kindeshalter. Archiv fur Psychi- without properly meeting the criteria. only part of the time. After several behav- on how to better serve these individuals. atrie und Nervenkrankenheiten, 117, 76-136. “Jane,” age 22, attends our groups regu- ioral issues, and considerable, lengthy dis- The solution lies in examining an indi- larly. She has had both auditory and visual cussions on our part, we confronted “Bob” vidual’s psychological profile, physical Asperger, H. (1991). Autistic psychopathy challenges since birth. Because of these with our observations. The story emerged condition, past experiences, family histo- in childhood. In U. Frith (ed) Autism and specific challenges, she had difficulty ac- that although he had a speech impediment ry, environmental components, and health Asperger’s Syndrome. Cambridge: Cam- ademically, in maintaining relationships, as a child, he no longer did. Due to his and nutritional factors, thereby creating a bridge University Press. and in activities of daily living. Due to speech issues, he was mocked incessantly whole-person approach. Herbert (2014) her physical disabilities, she required an by his classmates and, therefore, had dif- states that “we try to treat symptoms with- Becker, K.G. (2012). Autism, Autoimmune IEP and needed services from her school ficulty with social interactions. His father out necessarily teaching people to regular- Disease and Socioeconomic Status. Au- district. However, in order to receive these was also extremely abusive toward him; ize these fundamental, everyday epigenetic tism 2:104. services, she needed to obtain an addition- his mother seemed to act as if nothing had factors aspects of existence.” By working al diagnosis justifying the expenditure. A occurred. His behavior as a teen became with the epigenetic factors and treating the Frith, U. (1991). Autism and Asperger’s school psychologist gave her an Asperger’s erratic, involving property destruction and underlying causes of symptomology, we Syndrome. Cambridge: Cambridge Uni- Syndrome diagnosis to provide her with alcohol abuse, and was consequently diag- can more accurately diagnose people. But, versity Press. necessary academic and residential assis- nosed with Conduct Disorder. He learned most importantly, we can alleviate many of tance. Although “Jane” had challenges in that the more disabilities and issues he had, the issues that create social, psychological, Grinker, R. (2007). “Diagnostic Criteria for particular areas that individuals with ASD the less he was ultimately responsible for. and physiological challenges, increasing Autism Throughout the Years.” www.un- share, she did not ultimately meet the cur- As a result, he attempted and succeeded in the well-being and productivity of indi- strange.com/dsm1.html Retrieved 5/31/2014. rent criteria for the diagnosis. lying to psychological evaluators to gain viduals with ASD symptomology. And, as “Bill,” age 48, has attended our groups an Asperger’s Syndrome diagnosis. He Directors of GRASP, our role in the ASD Herbert, M. & Arranga, T. (2006). Autism: for over eight years. He currently has a lived with the ASD diagnosis for over a Community is to acknowledge each of our a brain disorder or a disorder that affects co-occurring diagnosis of Schizo-Affec- decade until discovery. He has since been members as a whole-person, recognize un- the brain? Interview conducted by Autism tive Disorder and Asperger’s Syndrome. reevaluated and given an ASPD (Anti-So- derlying factors affecting treatment, refer One Radio, Fullerton, CA. His parents were WWII survivors; having cial Personality Disorder) diagnosis. Al- individuals to our organizational network endured an extremely traumatic experi- though he presented with past speech is- for support and evaluation, and continue to Herbert, M. (2014, March). Everyday Epi- ence. After the war, the family moved to sues, body tics, and social difficulties, his provide consistent, safe, and confidential genetics. Lecture conducted from Autism the United States to begin a new life. For erratic behavior, lying, manipulating, lack groups for our members. Research Institute, San Diego, CA. many years, the family was isolated cul- of remorse, and lack of repetitive behav- turally, linguistically, and socially. His iors was not consistent with ASD diagnos- Kate Palmer, MA, CCP, CAS, is Exec- Kanner, L. (1943). Autistic disturbances of mother comforted herself and “Bill” with tic criteria. utive Director and Lindsey Pfundstein, affective contact. Nervous Child, 2, 217-250.

Video Games from page 13 conflict which can impair the parent-child facturer. If parents significantly restrict cause their child to act out in an unsafe relationship as well. the amount of time their child spends on manner, consultation with a qualified men- diagnosis in the United States as it is in How can we parents protect our chil- video games, it may create a void in their tal health professional is indicated. other countries such as China and South dren from the insidious effects of exces- child’s free time. It will be important to For most American youth, video games Korea; it has only recently been listed as a sive video game play? Although it is im- help the child to fill that void by encour- are an enjoyed in healthy moderation. provisional diagnosis in the DSM-V enti- portant for us to teach our children that aging healthier activities, such as reading However, a number of youth, particularly tled “Internet Gaming Disorder.” However, too much time playing video games is for enjoyment, social contact with peers, those on the Autism Spectrum, suffer from a great deal of research evidence confirms unhealthy, most children need parents to sports or family activities. In order to pro- the effects of excessive play. It is the duty that 8-12% of young people develop an set firm limits to guide their screen hab- tect our children from inappropriate con- of all parents to protect our children from impairing behavioral addiction to video its. The American Academy of Pediatrics tent, parents should understand how to use the dangers of excessive video game play games. These youth become psycholog- recommends a total screen time (includ- video game ratings system (such as the and guide them towards healthy media ically dependent on video games to give ing television, computer, and video game ESRB) and encourage video games with habits which will last a lifetime. them an immediate sense of competence, play) of no more than one or two hours positive and educational content. Playing independence, and relatedness (through per day. This is a healthy but ambitious video games with our children can be an Paul Weigle, MD, is a Child and Ado- interaction with video game characters) goal, as it is significantly less than the av- enjoyable way to understand the game’s lescent Psychiatrist and the president of and to relive negative moods. However, erage amount of screen time the average content and what it means to our children. the medical staff at Natchaug Hospital. Dr. over time addicted youth feel diminishing American youth engages in. Whatever Finally, it’s important for parents to act as Weigle has served on the American Acad- competence, independence and relatedness limit parents decide upon, it is vital that a positive role model by monitoring and emy of Child and Adolescent Psychiatry’s in the real world often leading to decline they maintain the rules in their household, limiting their own electronic media habits Media Committee since 2002. Since that in mood and depression. Excessive video using rewards or punishments to ensure as appropriate. time he has studied the mental health effects game play negatively impacts the lives of the child’s compliance as needed. In order Although youth who are addicted to of electronic media habits, and has taught children in a number of ways, including for parents to adequately supervise their video games are in particular need of such on the topic at numerous national psychiat- deteriorating sleep and academics habits as children’s media habits, all screens should limits, those whose access to video games ric meetings, as well as on radio and televi- noted above. Overuse of video games of- be left in public areas of the home, not has been abruptly restricted will some- sion. Correspondence for this article can be ten results in decreased face-to-face social allowed into a child’s bedroom. Parental times threaten their parents or themselves sent to [email protected]. contact with peers, which can degrade ex- controls can be set on video game consoles in a desperate attempt to coerce their par- isting social relationships and skills and ul- (such as the Xbox or PlayStation) which ents to relent or simply out of despair. In Reference timately lead to social anxiety. Caring par- will limit what types of video games will such situations, a parent must act imme- ents often respond by attempting to control play and can set time limits for game play diately to ensure the safety of their child Kaiser Family Foundation (2010). Gen- the child’s video game habit, which is very by the day or week. Details on how to set and themselves. If a parent feels that they eration M2: Media in the lives of 8- to threatening to a child who has become de- these controls (which can be locked with cannot effectively enforce limits on their 18-year-olds. Menlo Park, California: Au- pend on the video game habit to meet their a password) can be found with a YouTube child’s excessive video game habits, or thor. Retrieved from www.kff.org/entme- psychological needs, resulting in severe search or by calling the console manu- if they feel that attempting to do so may dia/mh012010pkg.cfm AUTISM SPECTRUM NEWS ~ SUMMER 2014 www.mhnews-autism.org PAGE 31

Problem Solving from page 19 proach, the authors have developed a mod- able to identify that his goal consisted of two rehearsal activities to promote skill acqui- el of social problem solving that uses the parts. First, he wanted to get Billy out of his sition, performance, generalization and flu- appropriately, demonstrating self-control, easily learned acronym of POWER. The seat and second he wanted him to still be his ency. Additionally, daily activities reinforce controlling emotions, solving social prob- steps of POWER-Solving® include: friend. He reported that his desire to reach these skills, some of which include designing lems, managing anger, and generalizing this goal was a nine on the ten-point scale. their own feelings thermometer, developing learned social skills across settings. Elliott Put problem into words The fourth step of POWER-Solving® in- novel products via group collaboration, and and Gresham (1991) indicated that social Observe feelings volves “Explore solutions.” Socially skilled developing a skit to teach a specific skill. skills are primarily acquired through learn- Work out your goal individuals are able to generate a range of To increase students’ performance of ing (observation, modeling, rehearsal, & Explore solutions effective solutions but those with impair- the desired skills, use of a token economy feedback); comprise specific, discrete ver- Review plan ments are more limited and often apply the may be helpful, whereby points are earned bal and nonverbal behaviors; entail both same rigid solution over and over again in during the day for displaying appropriate effective and appropriate initiations and Each of the five steps of POWER-Solv- spite of repeated ineffectiveness. Joey was behavior, demonstrating a predetermined responses; maximize social reinforcement; ing® has been previously identified as taught to “brainstorm,” which involves gen- individualized social behavioral objective are influenced by characteristics of envi- reliably distinguishing between children erating as many solutions as possible that and for using the POWER-Solving® steps. ronment; and that deficits/excesses in social with emotional/behavioral disorders and might reach the stated goal, provided the At the end of every day, points could be performance can be specified and targeted psychologically well-adjusted individuals. solution is safe, fair, and effective. Joey was exchanged for a reward. In addition to the for intervention. Social skills can be con- The ability to “Put problem into words” is able to identify that approaching Billy and direct instructional format, incidental teach- ceptualized as a narrow, discrete response critical in order to start the problem solv- saying “Excuse me but I need to sit in my ing should be used in anticipation of a chal- (i.e., initiating a greeting) or as a broader ing process. Children with ASD often have seat now” would help him to accomplish lenging situation as well as a consequence set of skills associated with social problem difficulties finding the words to identify a his goal(s). Behavioral rehearsal, combined for failure to use the steps when confronted solving. The former approach results in problem. Thus, the first step in this approach with coaching and feedback, helped Joey to with a specific problem. An experienced so- the generation of an endless list of discrete involves direct training in the use of the ru- become fluent in applying this solution. cial skills coach, generalization strategies, skills that are assessed for their presence/ bric “I was… and then…” Upon entering the The final step of POWER-Solving®, “Re- and a systematic plan to teach and reinforce absence and are then targeted for instruc- classroom and finding a peer in his seat Joey view plan,” involved Joey reviewing his plan skills are critical for success. tion. Although this approach has an intui- immediately pushed the peer in an attempt to use this skill the next time the situation tive appeal and is easily understood, the to get him out of his seat. Through the use of presented and to reward himself by saying Please feel free to contact us at Behavior child can easily become dependent on the POWER-Solving® Joey was taught to artic- “I am proud of myself for figuring this out.” Therapy Associates for more information teacher/parent in order to learn each skill. ulate “I was walking into the classroom and POWER-Solving® has been applied about best practices for social skills training, An alternative approach focuses on then I saw that Billy was in my seat.” successfully in multiple settings such as as well as information regarding the POW- teaching a problem solving model that the The second step of “Observe feelings” the classroom, a summer treatment pro- ER-Solving curriculum. We can be reached child is able to apply independently. Rather was addressed by helping Joey develop a gram, clinical settings and home environ- at 732-873-1212, via email mselbst@behav- than focusing on teaching a specific behav- feelings vocabulary (e.g., angry, frustrated, ments. The curriculum is systematic and iortherapyassociates.com or on website at ioral skill, the focus is on teaching a so- scared, sad) as well as measuring the inten- relies heavily on visual cues and supports. www.BehaviorTherapyAssociates.com. cial problem solving model that the learner sity of these emotions using a scale from Children are taught how to problem-solve would be able to use as a “tool box.” The one to ten, with a one being “very weak” first using their “toolbox” (i.e., the five References well-used saying “give a person a fish and and a ten being “very strong.” Photographs steps of POWER-Solving®). The children she eats for a day but teach her to fish and and drawings were used extensively to are presented with specific unit lessons on Crick, N.R., & Dodge, K.A. (1994). A review she eats for a lifetime” is particularly rele- capitalize on his strong visual skills. each of the five steps of POWER-Solv- and reformulation of social information-pro- vant. The social problem solving approach The third step of POWER-Solving®, ing®. All children have an opportunity to cessing mechanisms in children’s social ad- offers the promise of helping the child with “Work out your goal?” involves identify- practice each step of POWER-Solving®. justment. Psychological Bulletin, 115, 74–101. ASD to become a better problem solver, ing the goal and the motivation to reach the After learning each step of POWER, the thereby promoting greater independence in chosen goal. This critical step sets the stage children have acquired a “toolbox” which Elliott, S.T. & Gresham, F. M. (1991). So- social situations and throughout life. for what follows. The goal must be specific they can begin to apply to social situations. cial skills intervention guide: Practical After many years of conducting social and measurable, consistent with Applied Be- When teaching social skills, it is import- strategies for social skills training. Circle skills training using the specific skill ap- havior Analysis (ABA) principles. Joey was ant to coach the children through behavioral Pines, MN: American Guidance Service.

TED-Style Talks from page 6 medicine for answers. Dr. Offit warned the latest research in understandable manner. cused fashion. There’s not a single talk that audience to be careful when considering Lauren Rimland, a parent of a child with I won’t be sharing with my students. And During the question and answer session at alternative medicine because it is an un- autism, stated, “The speakers were well the fact that all of these can be shared with the end of his talk, Mr. Morris shared that regulated industry. aware that they were addressing families so many makes them much more valuable.” his greatest dream is for people with and Other topics of ASF’s TED-Style Talks who might not have the same background without autism to become friends, and for included the new “1 in 68” autism preva- or experience as scientists, and they pre- If you were unable to attend this year’s all people to have a greater understanding lence numbers from Dr. Cathy Rice of the pared accordingly, using humor and fam- Day of Learning, take heart in knowing of ASDs. CDC, a look at why autism interventions ily-friendly language in many instances.” that the Autism Science Foundation is Rounding out the day’s talks was Dr. often fail in schools from Dr. David Man- Dr. Connie Anderson, Director of Autism already planning next year’s TED-Style Paul Offit, Chief of the Division of In- dell of the University of Pennsylvania, Studies at Towson University, also attended Talks. In the meantime, all of this year’s fectious Diseases and the Director of the and a talk on finding autism biomarkers in the event. One of Dr. Anderson’s favorite talks can be found at www.autismscience- Vaccine Education Center at the Children’s young babies by Dr. Ami Klin of the Mar- parts of the TED-Style Talks was the fact foundation.org/TEDstyletalks. Hospital of Philadelphia. Dr. Offit’s talk cus Autism Center at Emory University. that they were all recorded and uploaded to For more information about the Autism asked, Is Alternative Medicine Really an Many of the Day of Learning’s atten- the Autism Science Foundation’s website. Science Foundation or about the TED-Style Alternative? He explained that because dants were parents who embraced the She commented, “I have never attended an Talks, please visit www.autismsciencefoun- there is no clear cure for autism right now, unique opportunity to hear first-hand from event where the latest research was shared dation.org or contact Meredith Gilmer at people often look to alternative, untested numerous scientists presenting the field’s in such a succinct, understandable and fo- [email protected]

Collaboration from page 20 were going to work together to truly make ily balance the educational, medical, and ASD; 2.) to improve quality of care; and a difference in my child’s life.” mental health needs of their child.” 3.) to reduce costs. IEP team leaders; and any other provid- A parent whose child was in the program With the initial success of the Tufts ABC The Tufts ABC Program will be ex- ers working with the family. The purpose stated, “We have a complex family dynamic, Program, it was expanded from a month- panding further this fall to a twice-weekly of the meetings is to help ensure that the and the ABC team has been able to take the ly clinic to three times a month during the clinic to better meet the needs of families. child’s care is not fragmented, and to clari- time to troubleshoot difficulties and come first year. So that a rigorous evaluation of Referrals must come from a youth’s cur- fy the goals that the youth and family agree up with new approaches for us to try. One the positive results of the program could rent medical provider (pediatrician, psy- are most important to them. of the most impressive parts of the program be conducted, the ABC team applied for chiatrist, psychologist, etc.) who will be Families and professionals who have is that the doctors gave our son the encour- and was awarded a highly competitive responsible for care coordination after the been involved in the ABC Program have agement and a safe place to express angry two-year grant of $250,000 in May 2014 program is finished. For an ABC intake reported great satisfaction with it. One feelings, which has opened up a whole new from the Office of the Massachusetts At- form or more information, please contact guardian said, “From our first meeting, it level of communication with him.” torney General (AGO). The purpose of [email protected]. was clear I now had a team working with An in-home therapist said of the pro- the AGO grant is to increase “access to, me and I was so relieved. I’ve felt like I’ve gram: “Our meetings with the ABC team and measure the benefits of, providing be- Bernadette Murphy Bentley, MPA, is the been on my own all of these years and it have enabled us to work together to offer havioral health services in Massachusetts” Autism Resource Specialist/Family Support was like a breath of fresh air to learn about a more comprehensive level of care to our and the ABC Program will do so by striv- Coordinator at the Center for Children all the resources that are available to our client. I believe that through this innova- ing toward three objectives: 1.) to increase with Special Needs at Floating Hospital for family, and to know that professionals tive collaboration, we have helped the fam- health and well-being of patients with Children at Tufts Medical Center in Boston. PAGE 32 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SUMMER 2014

Treatment from page 14 developmental goals specific to the unique and has increased both awareness and won’t feel the need to leave for a job that needs and abilities of the client, and may treatment options for autism. Meanwhile, does offer autism coverage, companies can included under the ASD diagnosis, autism include targets such as hygiene, compli- opponents of the renewal believe that cur- expect to maximize employee retention. treatment techniques are oftentimes benefi- ance with medical and dental procedures, rent legislation has been largely ineffec- Though the number of children and fami- cial for children diagnosed with social prag- positive participation in family and com- tive, and are calling for a total overhaul of lies facing autism has grown, so has our un- matic communication disorder. munity events, or reducing the occurrence the program rather than allocating millions derstanding of the disorder and its challeng- The impact of DSM-5 on the diagnosis of inappropriate speech and physical ag- in additional funding. es. As growing demand delivers improved of autism remains closely monitored, par- gression. Additionally, caregivers are As the push continues for effective legis- assessments and better access to high-qual- ticularly in relation to how it might influ- trained on how to promote their child’s op- lation and expanded coverage options, we ity treatment services—and we are working ence autism’s rising prevalence. timal functioning and behavior outside of a continue to promote the benefits of ABA to make sure it will—more children will therapy setting. treatment, particularly as delays in receiv- benefit, and families can spend their time ABA Treatment Studies have shown that ABA therapy ing vital developmental services positions together enjoying life rather than fighting techniques produce significant develop- children with autism to become reliant on to ensure the quality of it. As we continue to strive for a better un- mental improvements for persons with au- more comprehensive therapy options as derstanding of autism and how to address tism regardless of age, cognitive level or they mature into adulthood. Christopher Dennis, MD, MBA, FAPA it, we know that early and sustained inter- co-occurring conditions, and that children is Chief Medical Officer of ValueOp- vention programs currently offer the best who participate in a meaningful ABA pro- Opening the Door to Treatment tions’ Commercial Division, a Fellow hope of improving outcomes for individu- gram exhibit greater adaptability, engage- of the American Psychiatric Association als experiencing the disorder. ment and aptitude—both in the classroom In my work with ValueOptions, a man- and an assistant professor at St. George’s Over the past several decades, applied be- and in the world at large. aged behavioral health care company, I fre- University AIM. havior analysis (ABA) has steadily gained Though many children benefit from quently present the business case for mak- acceptance for its substantial clinical re- ABA treatment, obtaining coverage for it ing autism coverage a standard part of any References search and documented effectiveness in still remains a challenge for many families. company health plan. Autism coverage, I improving the developmental challenges Presently, 37 states have enacted autism explain, should not be viewed as a “perk,” Facts about Autism. (n.d.). Autism Speaks. often present with autism, and has been en- insurance reform laws mandating coverage but as a business necessity: with autism Retrieved May 6, 2014, from www.autism- dorsed by several state and federal agencies, of autism treatment services for state-regu- rates rising, more employees will require speaks.org/what-autism/facts-about-autism including the American Psychological As- lated insurance plans. However, some state access to treatment options, and business- sociation, the National Institute of Mental mandates define ASD and ABA as behav- es that meet this need are positioned to Kogan, M. D., Strickland, B. B., Blum- Health, and by the U.S. Surgeon General. ioral health benefits, and impose age limits achieve a number of gains. berg, S. J., Singh, G. K., Perrin, J. M. & ABA treatment methods are designed on treatment and monetary caps on autism For one, children who achieve higher van Dyck, P. C. (2008). A National Pro- to modify behaviors by observing and ad- therapies. The impact of the mental health levels of functioning have lower overall file Of The Health Care Experiences dressing the environment in which a par- parity law on these caps is uncertain, and health care costs (of course, that same argu- And Family Impact Of Autism Spectrum ticular behavior takes place, and by using the interpretation by state regulators may ment can be applied to caregivers, who will Disorder Among Children In The United positive reinforcement to strengthen vari- vary state by state. be less likely to incur the mental and phys- States, 2005-2006. Pediatrics, 122(6), pp. ous social and developmental skills. Under Even the autism community is divided ical health issues as a result of providing e1149-e1158. DOI 10.1542/peds.2008- the direct supervision of a trained ABA on the approach to legislation. As of this non-stop support). Children that are higher 1057. professional, clients typically receive any- writing, a debate is stirring on Capitol Hill functioning also produce better outcomes where between 10-25 hours of treatment over the renewal of the Combating Autism in school, and require less assistance from Rich, P. (2011). Helping Employees who per week or 26-40 hours if more intensive Act, which is set to expire in September. their families. This allows employees more have Children with Special Health Care treatment is required. Treatment hours are Advocates of the legislation’s renewal ar- time and energy to focus on their work, not Needs: Tips for Employers. Retrieved increased or decreased according to the cli- gue that since its enactment in 2006, the to mention a reduction in personal stress, May 20, 2014, from http://www.busi- ent’s progress. act has provided more than a billion dol- which tends to bleed over into our work nessgrouphealth.org/pub/f315390e-2354- Treatment plans address behavioral and lars of funding for programs and research, relationships. And as vital staff members d714-51e1-cb8909abdf44

Kayak from page 25 wrote, “I met your sister Donna today.” wouldn’t let him have more Cheez-Its. anniversary and the last picture taken, the This wouldn’t have been so bad, given When the dances were finished, every- bride and groom climbed into a rowboat and do! He stims and grunts and zooms the circumstances, except her sister’s name one headed outside to enjoy the beautiful and paddled off into the sunset. around, yelling out weird phrases he picks is Dawn. weather. The men took off their ties and (Watching their silhouettes on the water, up from the lovely and educational Cartoon And the cake! Please, the cake. The cake loaded kids into paddle boards and canoes I paused for a moment to reflect once more Network, like, “This is so disturbing!” was set in the middle of the dance floor for a quick trip around the lake. I sat on the on my own wedding, and how my mother’s Trust me when I say that we are not em- during lunch, all three yummy tiers of it. boathouse with Rose in my lap, soaking date at the time, a man named Al, ate the barrassed by him. If anything, his stimming For the rest of the meal we yelled at Jack in the sun and talking about what kind of top of my cake on the car ride home. Ap- is part of my background noise, the tympa- to get away from it, because nothing says wedding she’d like to have. parently, Al was hungry.) ni of my day. But I am mindful that other “Congratulations! You’re married!” quite I looked towards shore and saw Jack The next morning I caught Jack try- people may or may not want their wedding like a boy with autism stimming into the pulling a kayak off of the sand. “Jack? No ing to plug the waffle iron in after I told vows punctuated by a ten-year old boy wedding cake and knocking it to the floor. buddy, we aren’t going to take that out. him to wait for my help. I curled my lips shouting something he heard Sponge Bob Then there was a wooden bench that the Those tip really easily.” He looked up and around my teeth and hissed, “Remember Square Pants say. groom made by hand. It was beautiful. It nodded, and satisfied that he’d understood the KAYAK!” and he jumped back, star- We got through the ceremony okay. Hen- was symbolic of family, strength, and ev- my answer, I turned back to Rose. tled by the memory. “I tipted it over,” he ry’s pants stayed up and our eight-year-old erlasting love, and after lunch the bride’s “So, I don’t have a sister but maybe remembered sadly. son Charlie dropped the frog he caught just brother announced that everyone should Daddy could be my maid of honor?” Huh, I thought to myself. Maybe he before the music started. Jack rocked a few write a special message and sign their name. “Well, um, usually—“ learned something. Maybe the memory of times but otherwise remained quiet, and On the bench. Mid-sentence, I was interrupted by a the kayak sliding out from underneath him tween Joey didn’t roll his eyes once. Our Armed with black Sharpies, all five of my high-pitched shriek I’d recognize any- and the cold rush of water and wet pants six-year old daughter, Rose, stood in awe, kids raced over to the aforementioned bench. where. I looked back to the shore to see will help keep his impulses at bay. For as the bride walked down the aisle in her But I have no idea what they wrote because Jack standing—drenched—in two feet of now, anyway. long white gown. I was too scared to look. I just prayed they water, screaming in front of fifty-plus peo- That night Joe and I watched the vid- Afterwards, we filed into the reception spelled their own names right and no one ple with the kayak tipped over by his side. eo he took of the bride and groom sailing area to admire the decorations and décor; drew anything that looked like this: And I was, excuse my language, pissed. off on the lake. And we almost fell off the the bride and groom’s initials in bright yel- Seeing red pissed. As in I’d-better-sit-here- couch laughing. Because standing on the low, flowers tied with ribbons and candles for-a-moment-and-collect-myself kind of boathouse in the background is none oth- in glass bowls. The personal touches! The pissed. I took a deep breath, stood up, and er than Jack himself, white towel clutched details! Weddings like this make mine look made my way over to him. With one hand around his waist, black dress socks pulled as though we got married in a big box store on his shoulder, I propelled him onto the to his bony knees, waving his little heart under fluorescent lighting. sand. “Jack,” I whispered-screamed. “You out to his favorite person in the world. There was a little basket full of coasters disobeyed me. I am very angry.” It was as special as special can be. made from wood, and guests were asked to (Note: “Whisper-scream” is a tactic I use leave pieces of advice for the newlyweds. to appear as though I’m calm (whisper) but “What Color Is Monday?” is available I caught a glimpse of what other people I’m really, really mad (scream). It involves on Amazon.com and BarnesandNoble.com. wrote, sweet things like never go to bed an- screwing your face up like an alien.) You can also follow Carrie on her weekly gry and the couple who prays together stays At the end of the reception, after the top blog: www.WhatColorIsMonday.com and together. In his big loopy handwriting, Jack Henry drew this because he was mad I of the cake had been preserved for the first Facebook.com/WhatColorIsMonday. AUTISM SPECTRUM NEWS ~ SUMMER 2014 www.mhnews-autism.org PAGE 33

Autism Paradox from page 22 reaction to words and music. They told brain/awr335), Dr. Schneider stated: atric Radiology, Vice-chairman, Research Dr. Schneider that the boy not only com- “To investigate this paradox between Dept. of Radiology at Children’s Hospital for him to know it. That’s because autism prehended receptive language, but that impaired language and preserved music of Philadelphia, Professor of Radiology at impacts the regions of the brain (housed he had a very active brain. On the slides functions in autism, we combined func- the Perelman School of Medicine, and Ad- in the front) that produces speech and that showed him deciphering his parents’ tional MRI, functional connectivity and junct Professor of Linguistics at the Uni- fine-motor skills. voices played backwards, the colors of his diffusion tensor imaging (DTI) to evaluate versity of Pennsylvania) compelled me to My favorite math problem he solves: A brain lit up like a Christmas tree. Not all functional and structural systems sensitive learn more about signaling delays. horizontal line with a second line forming ASD children in the study showed Frid- to language and music in low-functioning The following January, I drove Frid- an angle, asking which angle to measure, rik’s remarkable ability. autistic patients and typically developing rik down to Philadelphia to me with Dr. acute or obtuse. The next normal step to is For the next five years, “Dr. Harry,” as age - matched controls.” Roberts in his lab at Children’s Hospital. to take a compass and measure the angle. he is called by children and parents, used What does that mean? One day, a mobile He showed Fridrik and I the radiology lab Not Fridrik. He looks at it and knows in- tCDC treatment on Fridrik to help him app could be developed that would allow where he uses the Magnetoencephalogra- stantly to the exact degree the size of the read. When he wore the headband with a parent or teacher to speak into a smart- phy (MEG) imaging machine to measure angle: 40, 94, 61, 137, 12, or 154. He has the two sponges that delivered extremely phone, and on the other side their com- brain waves and signal processing of au- been right every single time. Amazing. low amperage from a 9-volt battery, Frid- mand would be sung in a lullaby. Instead tistic children. Not knowing how intelligent Fridrik re- rik could read out loud full sentences, al- of the autistic child ignoring the command, In a paper he co-wrote as the lead re- ally is or the hidden talent he possesses has beit speaking slow. When he wasn’t being as it happens today everywhere, the child searcher, Auditor Magnetic Mismatch hampered his ability to grow within the U.S. treated during the week, his speech would would get dressed, sit down for a meal, or Field Latency: A Biomarker for Language education system. It’s not a knock on it or regress. No doubt, tCDC improved his go play. More research is needed, but the Impairment in Autism (http://www.ncbi. New York City’s public schools, or even comprehension. Today he responds to peo- future looks bright for a new way to com- nlm.nih.gov/pubmed/21392733), it reads: their teachers. Special education simply ple’s questions with one or two words. He municate with non-verbal children on the “Mounting electrophysiological evidence hasn’t adopted for the new strange, counter- also understands the nuances of grammar, spectrum like my son. suggests that deficits in discriminating rap- intuitive world of children on the spectrum. such as the subtle difference in pronouns. Today, Dr. Joy Hirsch, Ph.D., Profes- id changes in sound may be associated with And although the therapy hasn’t spurred sor of Psychiatry and Neurobiology, Yale impaired speech processing in children suf- Communication Deficit of the School System Fridrik to speak fully - yet - it did set him School of Medicine, as head of Yale Uni- fering from developmental disorders.” on a journey of self-discovery. versity’s new Brain Functioning Labora- From Dr. Harry’s transcranial direct cur- With the explosion of autism rates soar- For a child who at the age of five years tory (http://fmri.org/team-2/) has taken Dr. rent to Dr. Roberts’ research on brain wave ing the past two decades from 1-in-2,000 old in 2005, who was totally mute for Harry Schneider with her to Yale as a vis- processing, I see my son’s speech deficits born with ASD to 1-in-68 in a recent CDC three years, too many of his early special iting professor, since “His research focuses in a new light with his super fast ability to study, U.S. schools will continue to be over- education staff thought of him as kind of on autism and the neural circuitry that un- compute the most complex math problems. whelmed by the epidemic, which has an dumb; they continued to test him with the derlies language disorders.” With one part of Fridrik’s brain delayed environmental component (www.cdc.gov/ same boring stuff time and again, as spe- by 50 milliseconds at a very early age, media/releases/2014/p0327-autism-spec- cial educators have not been able to reach Brain Signals and Communication Barrier other parts of his brain developed with trum-disorder.html). “Better diagnosis” him. What they learned the following year, incredible results. Like a blind person, cannot explain away the sharp rise of autism silent Fridrik put full sentences together In the fall of 2012, I attended the annu- whose other senses are heightened due to incidence rates. That math doesn’t add up. with words on a table, arrange them into a al Advances in Autism Conference at Mt. the lost sight, Fridrik has a gift that Py- After treating the environmental impact sentence to match an image or picture. He Sinai Hospital’s Seaver Autism Center. thagoras of Pythagorean theorem fame of Fridrik’s diagnosis - Pervasive Develop- constructed the sentences backward; from During the morning presentation, Dr. Tim- might have appreciated. mental Disorder (PDD) - with glutathione the objects he saw coming first. othy Roberts of the Children’s Hospital If Fridrik is the Michael Jordan of math, injections, an assortment of nutrients and Unfortunately, that information got lost in at the University of Pennsylvania, said then he will have to overcome his OCD as vitamins, a year of chelation therapy, and files when he aged out and transitioned from something that caught my attention: His much as the broken U.S. education system other alternative medicine regiments, in one public school program to another. So the 15 years of research analyzing the brain will have to change. When that happens, I 2009 a research study at Columbia Uni- next special ed class started from scratch. waves of children, he told the rapt audience suspect many other bright children, with versity that uses transcranial Direct Cur- that the signal processing in autistic chil- their inability to talk, will be discovered rent (tCDC) treatment to bridge signaling Music’s Autism Paradox dren was “delayed by 50 milliseconds,” or and set on a course for a brighter future. impairment accepted Fridrik as one of the a twentieth of a second. It’s time for normal people to remove their patients in the study. Dr. Harry, who is a linguist, neuroscien- That was the same 20th of a second delay biases and misunderstandings of autism and After undergoing a functional magnetic tist, and speaks several languages, has tak- that Infochimps’ CEO Jim Kaskade told learn to listen and communicate in new ways. resonance, a 3-hour neuroimaging proce- en tCDC stimulation therapy on the road to me what’s called “near real time” in big dure under sedation, Dr. Harry Schneider Indiana, North Carolina, Puerto Rico, Bra- data databases (http://www.huffingtonpost. James O. Grundvig is the father of an (www.harrydschneidermd.com/html/au- zil, Israel, and parts of Europe. His research com/james-grundvig/big-data_b_2068814. autistic son and is a freelance journal- tism.html) mapped Fridrik’s brain activity discovered something unique in all spec- html). For autistic children that delay pre- ist with Huffington Post, Financial Times as it reacted to external stimuli: music with trum children: The region of the brain that vents them from spitting out words. Time Foreign Direct Investor Magazine and Ep- lyrics, favorite songs, the voice of his moth- receives music is not impacted by autism. and again, I have seen the frustration in och Times, covering subjects from energy er and father, their voices played backwards. In a peer-reviewed paper Neural Systems for Fridrik’s eyes as he tried hard to talk, but to technology. James also has 25 years in The renderings of 40 MRI slides captured Speech and Song in Autism, co-written with without a single word coming out. the engineering-construction industry and his brain’s reactions to each stimulus. Grace Lai, Spiro P. Pantazatos, and Dr. Joy The words of Timothy P.L. Roberts, PhD, lives and works in New York City. You may Compiled, the slides showed Fridrik’s Hirsh (www.readcube.com/articles/10.1093/ (the Oberkircher Family Chairman in Pedi- contact him at [email protected].

Free Support Group For Families of Adults with Asperger’s Syndrome and High Functioning Autism The focus of the support group is to assist families in understanding the complex issues related to their adult child impaired with Asperger’s Syndrome or High Functioning Autism. At many of our meetings, we have speakers address various topics of importance related to these syndromes.

For more information, visit our website www.FAAHFA.com or contact the facilitators: Bonnie Kaplan - [email protected] | Judith Omidvaran - [email protected] Socialization and Life Skills Group For Asperger’s Syndrome and High Functioning Autistic Adults Focused on: Employment &Issues, College Coaching & Supports, Socialization Self-Advocacy, Dating, and Relationships

For further information contact the facilitators: Patricia Rowan, LMSW - (914) 736-7898 - [email protected] | Susan Cortilet, MS, LMHC - (845) 406-8730 - [email protected]

Upcoming Meeting Dates: 2014 - 9/21, 10/26, 11/23, 12/14 2015 - 1/25, 2/22, 3/22, 4/26, 5/17, 6/21

Westchester Arc The Gleeson-Israel Gateway Center 265 Saw Mill River Road (Route 9A) Hawthorne, NY 10532 PAGE 34 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SUMMER 2014

Criminal Acts from page 18 marily, the only area of his life where he sons with autism as they are to everyone. Therapy of a Serial Threatener. American felt “alive,” important and equal to others This is especially relevant when an adult Journal of Forensic Psychology, (pending others, via possible criminal means, to try was when he engaged in uttering terroristic with autism evidences the negative resolu- publication). to resolve these developmental tasks. threats. Basically, after about three years in tion of these stages and/or when they start The relevance of the resolution of these reconstructive therapy, Mr. “M” was able engaging in inappropriate or even criminal Ghazziudin M, Tsai I, & Ghazziudin N. Eriksonian stage deficits was already ex- to develop a sense that he was as good as acts, via manipulation and control strate- (1991). Violence in Asperger’s syndrome: emplified in the case of Mr. “M” who pre- others and had self-value, a sense of ini- gies as a means of trying to reconcile these a critique. Journal of Autism and Develop- sented with an ASD, psychopathology and tiative with tasks that were important to same stages. In this way, reconstructive mental Disorders, 21, 349-354. psychosocial developmental deficits and him, a sense of pride in his capabilities, therapy can develop an essential personal terroristic threats (Faccini, 2014); these and developed a sense of positive iden- base so that more cognitive-behavioral in- Gilson, S.F. & Levitas, A.S. (1987). Psy- three factors were presented as contrib- tity in helping others and advocating for terventions and skills can be “embedded” chosocial crises in the lives of mentally uting to criminal behavior, as opposed to himself and other. A certain degree of au- into a coherent identity for the person with retarded people. Psychiatric Aspects of earlier research indicating autism-based tonomy was addressed, but he was taught autism and criminal acts. To date, recon- Mental Retardation Reviews,6 (6), 27-31. deficits or psychopathology. Mr. “M” pre- to rely more on his social support circle structive therapy has been applied to a sented with problems with theory of mind than to just stand on his own, especially handful of cases with positive outcomes. Howlin, P. (1997). Autism: Preparing for (that others could have thoughts and a when making important life decisions. In Adulthood. London: Rutledge. In Volkman feelings different from oneself), high sys- addition, when skill building was needed References F, Paul R, Klin A, Cohen D. (Ed.), Hand- tematization (organizing and counting of in therapy it could be easily incorporated book of Autism and Pervasive Develop- newspaper articles, etc.), and an average into the reconstructive therapy framework. Baron-Cohen, S. (1995). Mindblindness: mental Disorders: Third Edition. Volume 1: amount of empathy. In addition, he also In fact, this may be an important concept An Essay on Autism and Theory of Mind. Diagnosis, Development, Neurobiology, and evidenced compulsive cleanliness rituals that is either a coherent identity or these Boston: MIT Press/Bradford Books. Behavior. New Jersey: John Wiley and Sons. and an unresolved trauma with underlying psychosocial stages need to be positively exaggerated fears of the world being dan- resolved before skill building approaches O’Brien, G. (2002). Dual diagnosis in of- Palermo MT: Pervasive developmental gerous. Also, he had a substantial number can be effective. This may especially be fenders with intellectual disability setting disorders, psychiatric co-morbidities and of significantly negatively resolved Erik- the case with individuals with a high func- research priorities: a review of research the law. International Journal of Offend- sonian developmental stages. The negative tioning ASD who have also committed findings concerning psychiatric disorders er Therapy and Comparative Criminolo- resolution of these stages left him regard- lifelong criminal acts. (excluding personality disorders) among of- gy,48(1), 40-48. ing himself as worthless, with a constant In conclusion, the positive resolution of fenders with intellectual disability. Journal fear that others would see him as inade- Eriksonian psychosocial stages towards of Intellectual Disability Research, 46, 21-30 Scragg, P., & Shah, A. (1994). Prevalence quate and powerless to control his life and self-value, autonomy, initiative, pride, of Asperger’s syndrome in a secure hospital. make important decisions for himself. Pri- identity and intimacy are as relevant to per- Faccini, L. (2014). The Reconstructive British Journal of Psychiatry, 165, 679-682

Hospitalization from page 10 them to assess the providers themselves. ble, family/caregivers should accompany Senior Staff Psychologist and Natalia The more informed the family/ caregivers the patient to the first appointment as part Appenzeller, PhD, is Clinical Director at patient’s participation in the transition are, the better able they are to participate in of the reintegration process. It is important the Fay J. Lindner Center for Autism and planning process the discharge process. that all be aware that on discharge, patients Developmental Disabilities. Contribu- are usually not “fixed” and are frequent- tions to this article were also made from • Creating a collaborative team ap- Preparing for Discharge ly highly vulnerable, making the need for Carole Kalvar, Faith Kappenberg,PhD, proach with all treatment providers patience, support and involvement in their and Bernice Polinsky. and family members during and fol- Early on in the process family/caregiv- treatment even more essential. This article was originally published in lowing the hospitalization ers should start thinking about their role the fall 2013 issue of the Asperger Syndrome after discharge. It is important to realize Sophia Francis-Stewart, MD, is Staff and High Functioning Autism Association’s Individuals with ASD/DD often require ad- that the inpatient treatment team represents Psychiatrist, Katherine Cody, PsyD, is (AHA) print publication, On the Spectrum. ditional supports that inpatient units frequent- a “fresh set of eyes” that can make rec- ly do not provide. These supports include: ommendations to be implemented during admission and continued after discharge. • Visual Supports (pictures, words, Make sure that discharge instructions are Caregiver Tips for Easing the Way After Hospitalization symbols) explained thoroughly and ask questions if there is any uncertainty. The patient (or le- • Use of concrete, short chunks of language gal guardian) should sign legal releases so Work with the individual to create a structured daily routine. Structure is essen- inpatient discharge summaries can be for- tial to encourage focus and avoid the damaging impact of boredom and isola- • Clearly established rules and expectations warded to the outpatient provider(s). tion. Work with them to start a diary to create structure and routine, with spe- Understandably hospitalization is a stress- cific times for waking, personal hygiene and grooming rituals, meals, chores, • Communication of treatment goals in ful process and the discharge can be equally exercise, recreation, and bedtime. Try to keep the time intervals as short as clear, discrete descriptions as stressful. Family/caregivers should be possible. Structured activity keeps the mind focused, preventing brooding and aware that there is a choice in who provides During hospitalization family/caregiver outpatient psychiatric care to a patient after repetitive thinking, encouraging good “mental hygiene,” and preventing a spi- involvement is important. Many hospitals discharge. Sometimes it is best to continue ral down into inappropriate acting out or depression. have family therapy and family groups, with provider(s) that were in place prior to and attendance in these offerings is recom- admission, but sometimes it is best to seek Help the individual put an exercise routine in place. Any exercise program mended. Family and caregiver participa- more specialized provider(s). Also evaluate should be approved by their physician but, if possible, some form of vigorous tion includes the following: the needs of the patient including: activity should be incorporated into their schedule. This can be as simple as brisk walking and is extremely important for overall health and well-being. • Teleconferencing into sessions when • What level of care does the patient need? unable to attend in person • Are additional resources needed to Everyone needs a purpose to feel useful. Work with the individual to better • Obtaining a visit summary following visits meet the patient’s needs? access their strengths and interests. They could develop a better sense of self by assisting an elderly neighbor with chores or taking care of their animal. • Periodically checking in with mental • Will the patient benefit from working health providers with a provider who specializes in Defuse conflicts by learning more effective communication skills. Use short specific diagnoses of symptoms (i.e., • Write questions down prior to ap- ASDs, OCD, etc.)? and simple declarative statements to convey expectations. Often, less talk is pointments more effective. Don’t try to “talk down” an agitated person. Don’t tell them to Viable recommendations for additional “just calm down” or to “take it easy.” Instead, simply state what is expected • Taking notes at appointments supports should be investigated. Appropri- and walk away. It takes at least two for a fight and if you make yourself scarce ate referrals should be sought from the in- the individual is more likely to regain self-control. Make sure that what you are • Request informational handouts patient team and other reliable profession- asking the individual to do is reasonable and within their ability, and then be al sources. All services should be in place steadfast in requiring them to meet the expectation. Be clear, firm, and, above Even with the best psychiatric care, pa- prior to discharge. Contact information for tients can easily become upset with their the outpatient treatment team should be all, consistent. providers; it is essential that family/care- established to enable the inpatient team to givers remain objective about the providers communicate the discharge plan and facil- - Contributed by Maureen Holohan, Carole Kalvar, and Eric Schissel being involved in the treatment will allow itate a successful transition. Also, if possi- AUTISM SPECTRUM NEWS ~ SUMMER 2014 www.mhnews-autism.org PAGE 35

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