UTISM PECTRUM EWS TM A YOUR TRUSTEDS SOURCE OF SCIENCE-BASED AUTISM EDUCATION,N FALL 2016 INFORMATION, ADVOCACY, AND COMMUNITY RESOURCES VOL. 9 NO. 2 The Unique Needs of Girls and Women with Autism

Advice from a Young Woman in College with ASD

By Michele Ramsay, EdD placed on all new medications and meet Program Director new doctors. Now this label is not so scary, CIP Brevard Center and I can better understand the WHY to some of my behaviors. That allowed me to cope better and use the techniques the doc- hy is it sometimes difficult tors were showing me to fit in. to identify females on the I have heard that when a female is de- autism spectrum? Have they mure and not very talkative that she can be taught themselves to behave passed off as shy. If she gets really emo- Wdifferently in social situations? Have they tional and passionate about something, mastered the act of a social fake? Or have then someone says that’s her hormones, they simply figured out how to seek refuge and not emotional dysregulation, which is and escape? what they would say with a male student In working with students on the autism showing those characteristics. I feel that spectrum, female students often present society isn’t going to change anytime soon themselves differently than their male peers. and it will always be easier to diagnose a To dig deeper into this topic, we interviewed guy over a girl because too many people Stephanie Smith, a 24-year-old student at say … it’s just a female thing. CIP’s Brevard Center in Florida. She also attends the University of Central Florida Q. What are some general challenges (at where she is majoring in political science. least 3) that you have faced as a young woman with autism? The Challenges of Adolescence for Girls with Autism Spectrum Disorders A. It wasn’t until I was in middle school Q. How did your diagnosis affect you? A. 1) Not being taken seriously as someone when a doctor diagnosed me with autism. with ASD because most people on the Q. At what age were you first diagnosed Prior to that, I was diagnosed as bipolar A. I remember feeling horrible about my with autism? with ADD. diagnosis in the beginning. I had to be see Advice on page 10

Challenges and Solutions When Providing Services to Females with Autism

By Sandra A. Rogers, MS, BCBA an expectation that any staff member, re- daughters being victims of sexual abuse if little. People tend to be more comfortable and Mary Jane Weiss, PhD, BCBA-D gardless of gender, could be expected to a man were to be providing the care in the working with individuals of the same gen- Melmark work with any client male or female. bathroom. The male staff members similar- der, at least when it comes to hygiene needs. Male staff is expected to shower and dress ly expressed fears about being accused of and take care of all toileting needs (includ- sexual improprieties if they were required 2) We are up front about the fact that if we he majority of individuals with ing menses) for female clients. There often to work with female clients. do not have a female staff working on a autism are male, and females are complaints from the male staff that it We have tried to share with families and particular day, then we may have to assign with autism are often overlooked made them uncomfortable to care for a fe- staff that sometimes it may not be possible a male staff for that time period. in discussions of needs and pro- male client, especially during her menstrual to have a female staff to assist in the bath- Tgram planning. Special challenges exist cycle. Similarly, female staff members of- room—and during those times we would 3) We educate everyone about our stan- in serving individuals with autism who ten experience severe discomfort when per- have to have a male staff assist. Also, we dards for taking care of vulnerable individ- are female. In addition, females may be forming personal care on male participants. try to explain that we screen all applicants uals (both men and women), and that we vulnerable in ways that are often not ac- Families also have concerns in these prior to hiring them to work with anyone. would not tolerate any improprieties. knowledged or publicly discussed. We regards. In our experience, many parents All of the individuals we serve are vul- will review the special challenges associ- are adamant that their female child could nerable, but because there is a higher rate 4) We emphasize the importance of teach- ated with accommodating family requests not be toileted, bathed, or be assisted with of reported abuse for females than men, ing independence with hygiene skills as a for female-only staff, protecting indi- any hygiene routines by male staff mem- they may be at greater risk. We understand top priority, since individuals that are more viduals served from abuse, and ensuring bers. Furthermore, many of the male staff families’ concerns, and we always try to independent are less at risk to be violated. that curricular resources are developed were scared and uncomfortable with be- be as respectful as possible without prom- Also, female clients use sanitary pads as to achieve increased independence and ing asked to assist a female client with ising something that we cannot always opposed to tampons—even though main- self-protection. hygiene needs. If we grant family wishes, comply with. stream society typically prefers tampon Many homes serving those with devel- we also send a distrusting message to male Below is a summary of the guidelines we usage—because tampon assistance would opmental disabilities are co-ed. Due to the staff members. We also may be guilty of a use in this context. be an inappropriate and intrusive level of nature of the challenging behaviors that double standard. Do we impose the same help, even for an individual receiving a are experienced by the individuals served, restriction on female staff members with 1) We have men work with men and wom- high level of care. there are often more male staff than female male clients? Parents of females expressed en work with women as much as possible.

staff working in the home. It is generally many times that they worried about their This eases everyone’s anxiety at least a see Services on page 12

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Chair Cindy Alterson, PhD, BCBA, Principal and Program Director Devereux Millwood Learning Center Constance Y. Brown-Bellamy, MPA, President and CEO Brown Bell Consulting Joel Bregman, MD, Medical Director and Director of Psychiatry The Center for Autism Vice-Chair Joseph D. Buxbaum, PhD, Director Debra Pantin, MSW, Associate Executive Director VIP Community Services Seaver Autism Center - Icahn School of Medicine at Mount Sinai

Secretary Susan M. Cortilet-Jones, MS, LMHC Licensed Therapist/Adult Coaching Specialist for Peg Moran, LMSW, Vice President, Operations Autism and Neurodiversity - Discovering Your World Center for Regional Healthcare Innovation Westchester Medical Center Stephen E. Freeman, LCSW The Freeman Group Treasurer Lynda Geller, PhD, Founder Kimberly Williams, LMSW, Vice President, Integrated Policy Spectrum Services, A Cooperative of Independent and Program Solutions, Mental Health Association of New York City Practices and Organizations, New York, NY Members of The Board Ami Klin, PhD, Director Peter D. Beitchman, DSW, LMSW, Principal Marcus Autism Center Behavioral Health Consultation Harold S. Koplewicz, MD, President Yvette Brissett-André, MPA, Executive Director and CEO Child Mind Institute Unique People Services Cecelia M. McCarton, MD, Founder and Executive Director Jonathan P. Edwards, LMSW, Program Consultant The McCarton Foundation, The McCarton School (for Autism) New York City Department of Health and Mental Hygiene Judith R. Omidvaran Rachel A. Fernbach, Esq, Deputy Director and Assistant General Counsel, New York State Psychiatric Association Autism Parent Advocate, New York

Judith R. Omidvaran Theresa Pirraglia, Co-Founder and Board Member Autism Parent Advocate, New York FECA, The Foundation for Empowering Citizens with Autism

Barry B. Perlman, MD, Legislative Chair Patricia Rowan, LMSW, Consultant and Advocate New York State Psychiatric Association Kid’s Connection

Jorge R. Petit, MD Howard Savin, PhD Regional Senior Vice President, New York Market Senior Vice President, Autism Quality and Outcomes Beacon Health Options Beacon Health Options Robert H. Ring, PhD, Adjunct Professor, Drexel University College of Medicine; HHS Interagency Pat Schissel, LMSW, Executive Director Autism Coordinating Committee (IACC) Asperger Syndrome and High Functioning Autism Association

Joshua Rubin, MPP, Principal Alison Singer, President Health Management Associates Autism Science Foundation

Alan Trager, LCSW, Chief Executive Officer Richard Swierat, Executive Director Westchester Jewish Community Services ARC of Westchester

Founding Chairman Fred Volkmar, MD, Professor Yale Child Study Center Alan B. Siskind, PhD, LCSW

Executive Staff Linda J. Walder, Esq. Founder and Executive Director The Daniel Jordan Fiddle Foundation Ira H. Minot, LMSW, Founder and Executive Director Dianne Zager, PhD, Michael C. Koffler Professor in Autism David H. Minot, BA, Associate Director and Publisher Dyson College of Arts and Sciences, Pace University AUTISM SPECTRUM NEWS ~ FALL 2016 www.mhnews-autism.org PAGE 3 Table of Contents

The Unique Needs of Girls and Women with Autism

1 Advice from a Young Woman in College with ASD 14 On Being a “Unicorn”

1 Challenges and Solutions When Providing Services to Females 15 Sex Differences in Autism: A Treatment Perspective

4 The “Self” in Girls and Women with Autism Spectrum Disorder 16 What Happened to All the Females with ASD?

6 Leaders Join the Board of Mental Health News Education, Inc. 16 A Support Group for Parents of Tween Girls with ASD

6 From the Publisher’s Desk: “The Handshake of Hope” 17 The Lighter Side of the Spectrum - This Boy Jack

7 Gender Identity Among Women on the Autism Spectrum 18 How Autism Manifests Differently in Girls: Info for Families

8 The Initiative for Girls and Women with ASD at Yale 18 How Gender Differences Influence the Needs of Girls with ASD

9 The Social Needs of Women on the Autism Spectrum 19 The Challenges of Adolescence for Females with ASDs

11 Women at Work 21 The Unique Needs of Women and Girls with Autism

13 “Help Scientists Uncover the “Female Protective Effect” for Autism 23 A Clarification From the ASN Summer 2016 Issue

23 How Supported Decision-Making Can Help Family Caregivers

Editorial Calendar Autism Spectrum News Sponsors

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Autism Spectrum News is a Quarterly Print and Online Publication of Mental Health News Education, Inc, a 501(c)(3) Nonprofit Organization. All inqueries regarding advertising, subsriptions, sponsorhips, and submitting an article should be directed to: David H. Minot, BA, Publisher (978) 733-4481 • [email protected] 460 Cascade Drive, Effort, PA 18330 • www.mhnews-autism.org Mental Health News Education, Inc. does not endorse the views, products, or services contained herein. We are not responsible for omissions or errors. Mental Health News Education, Inc. is not responsible for articles submitted to us without the final approval of the organization’s Executive Director, CEO, or Public Relations Department. All articles and Advertisements are subject to final approval by our Editorial Board. We reserve the right to edit any article sent to us. Copyright © 2016 Mental Health News Education, Inc. All rights reserved. Content contained in this publication may be reproduced for one-time personal use. However, anyone wishing to reproduce and distribute any content from within this publication for purposes other than personal use must request this intention in writing directly to the publisher. Failure to do so will be in violation of the copyright held by this publication. PAGE 4 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2016

The “Self” in Girls and Women with Autism Spectrum Disorder

By Elizabeth V. Roberts, PsyD Lind (2010) examined memory and the ceptual overlaps between mentalization Clinical Assistant Professor self in ASD, and argued for a bi-direction- and other abilities - mindfulness, psycho- NYU Child Study Center al relationship between aspects of memory logical mindedness, empathy, and affect and self-concept. She found impairments consciousness (awareness of emotion) for in autobiographical episodic memory and both self and other. Mentalization lies at “Know thyself.” Socrates episodic future thinking in ASD and con- the intersection of these concepts and cap- cluded that these implied a diminished tures the mental state of being aware in the central focus in autism spectrum sense of self, or personal history, and of broadest sense - of one’s physical being in disorder (ASD) research and personality continuity through time. Oth- the moment, the motives, emotions and be- clinical practice are core chal- ers have investigated the sense of agency liefs of self and other that drive behavior lenges in social reciprocity and (SoA) embedded in the self. SoA is the ex- in the moment, and the ability, on either a Asocial interaction - the interpersonal. The perience of initiating and controlling one’s cognitive/intellectual or affective (feeling self in ASD - the intrapersonal - has been own actions and producing desired chang- state) level, to use one’s imagination of the paid relatively little attention. This article es in the world with those actions and it is mental states of the self and the other (Fon- presents preliminary thoughts about the a component of the self. The few studies agy et al., 2002). Mentalization is an elab- self and why exploring the self may be im- that have investigated SoA in ASD have orated version of Theory of Mind (ToM), portant in understanding and helping girls reported contrasting results, as some have a central focus in ASD. Mentalization has and women with ASD. shown this ability to be spared (David et been studied largely in the field of person- The self is a composite of the ways a al., 2015) and others, to be impaired (Zalla ality disorders. A recent study (David et person defines him or herself. Nineteenth & Sperduti, 2015). Much else needs to be al., 2015) found that mentalization (of the century philosopher William James de- understood about the many aspects of the other) was impaired in ASD (David et al., scribed two aspects of the self: the “I Elizabeth V. Roberts, PsyD self and ASD. 2015) but little attention has been focused Self” and “Me Self.” The I Self reflects on mentalizing or ToM as it applies to the what people see or perceive themselves do- and other influences, and ways that suf- Knowing Oneself: Mentalizing self in ASD. ing in the physical world whereas the Me fering results from discrepancies between Self is a more subjective and psychological the actual and idea self. New terms and Mentalization is a form of imaginative Link to Social Competence phenomenon, referring to an individual’s ideas continue to evolve out of this body of mental activity about others or oneself, reflections about themselves. Researchers work, namely self-awareness, self-reflec- namely, perceiving and interpreting human The relationship between self-awareness have continued to elaborate on this idea, tion, self-as-agent, and others. behavior in terms of intentional mental and other-awareness and social compe- for example, with theories concerning the states (e.g. needs, desires, feelings, beliefs, tence has been investigated primarily in evolution of the self across the life span, The Self and Autism Spectrum Disorders goals, purposes, reasons). People mental- other conditions - personality disorders, social and cognitive constructs affecting ize for many purposes - to teach, learn, alexithymia, and schizophrenia. Clini- and affected by self, the roles various as- While modern psychologists have stud- communicate, and collaborate. Intraper- cian-researchers concluded that fostering pects of the self-play in life experience, ied the self in myriad ways, relatively few sonal mentalization is necessary to know the interplay of self with culture, others, studies have examined these ideas in ASD. that we are and who we are. There are con- see The Self on page 20 AUTISM SPECTRUM NEWS ~ FALL 2016 www.mhnews-autism.org PAGE 5 PAGE 6 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2016

Charting a New Course for the Future of its Publications, New Leaders Join the Board of Mental Health News Education, Inc.

Staff Writer and Dr. Robert Ring, PhD,” stated Mrs. Let’s introduce you to our new board sociation. She has held this position since Autism Spectrum News Brown-Bellamy. members. 2013 and previously served as NYSPA According to Ira Minot, LMSW, Staff Attorney from 2001-2013. MHNE Executive Director, “MHNE is Rachel A. Fernbach, Esq. Ms. Fernbach’s work with NYSPA in- onstance Brown-Bellamy, MPA, embarking on an exciting new chapter cludes providing legal and policy guid- incoming Board Chair of Men- in its 16-year history, which will reshape Rachel A. Fernbach, Esq. is an attor- ance on statutory and regulatory issues tal Health News Education, Inc., how our publications are made available ney admitted to practice law in New York affecting psychiatrists, advocacy on issues (MHNE), publisher of Behav- to our growing readership.” David Minot, and New Jersey and is a graduate of Tufts of importance to psychiatrists and their Cioral Health News and Autism Spectrum BA, Associate Director of MHNE added, University and The George Washington patients, and training and various lectures News, has announced the appointment of “Our vision for the future is to transform University Law School. Ms. Fernbach on legal and practice management issues. four new board members. “We are delight- our publications into a more modern print is currently the Deputy Director and As- In addition, Ms. Fernbach is an attorney in

Rachel A. Fernbach, Esq. Joshua Rubin, MPP Yvette Brissett-André, MPA Robert H. Ring, PhD ed to welcome four outstanding and well- and digital media presence which we be- sistant General Counsel of the New York private practice with the law firm Moritt known leaders from the behavioral health lieve will have an even greater impact State Psychiatric Association (NYSPA), Hock & Hamroff LLP, located in Garden and autism communities to our board. on educating and supporting individuals the medical specialty association of psy- City, New York. Ms. Fernbach concentrates They are: Rachel Fernbach, Esq., Josh and practitioners in the mental health, chiatrists practicing in New York State and Rubin, MPP, Yvette Brissett-André, MPA, substance use and autism communities.” a division of the American Psychiatric As- see Leaders on page 26

From the Publisher’s Desk: “The Handshake of Hope”

By Ira H. Minot, LMSW ended, he was offered Electroconvulsive stretched hand. The banker smiled at him, Founder and Executive Director Therapy (ECT) as a last chance to save him patted him on the shoulder, and told him, Mental Health News Education, Inc. from a most horrible end—being sent to a “Keep up the good work.” dark ward at a nearby state hospital. Mirac- It was a simple gesture, but that hand- ulously, the ECT worked in his case, and shake had a profound and lasting impact. ith the holidays only a month over the coming months he felt the dark For many years after that day, the man in or so away, I recall a true curtain of his depression lifting. recovery often referred to that kind banker story I wrote about several It was now 1997 and he was living in and his reassuring handshake. “It made me years ago in this publication. supportive housing and attending out- feel like things were going to be OK and I WIt began with, “Let me tell you a story about patient treatment. To fill the other lonely would finally get well again.” a simple handshake that saved the life of a hours of his day he began attending a new- You see, that man was me. With the man from New York suffering with mental ly opened consumer-run drop-in center. He kind encouragement of that banker and the illness.” The year was 1987 and he was 38 hoped that by keeping busy and sharing the many other people I met along the path of years old. He had always been a happy and comradery of others would help set him on my recovery, I was inspired to create this productive person throughout his entire the path to recovery. publication in 1999. Through the following life. He had earned a Master’s Degree in One day at the drop-in center, Jim, the years, in what has seemed like an instant, Social Work and worked for many years in Ira and David Minot director, was giving a tour of the facility I was able to rebuild my life. I just cele- nonprofit organizations that were helping to a supporter who happened to be a well- brated my 65th birthday in July, and this people in the community. to endure such despair and hopelessness known local banker. Seeing the two men publication has been in existence now for Suddenly, out of nowhere, he began to that he tried to end his own life on several dressed in business suits walking through over 16 years!! experience severe anxiety and depression. occasions. the center reminded him of how he used I didn’t understand it at the time, but it His mother had recently lost a heroic battle He watched in horror as his life slipped to dress and collaborate with colleagues turns out that it was my desire to help oth- with cancer a few years before, and he had away from him, and was further tormented and community leaders before he became ers that was the key to helping myself get been separated from his 8-year-old son due that his young son—the love of his life— ill. He was a taken aback and a bit embar- better. I wanted to find a way to provide to a recent divorce. was growing up under the shadow of his rassed when the director and banker came education, resources and hope to people In a matter of weeks he was in the throes illness. In the end, he was left homeless over to where he was sitting. who were lost and struggling (as I had of a most severe form of depression that and destitute. During his last inpatient The banker extended his arm and our re- would last 10 years. His illness caused him hospitalization before his health insurance covering man stood up and shook the out- see Handshake on page 21 AUTISM SPECTRUM NEWS ~ FALL 2016 www.mhnews-autism.org PAGE 7

“Labels Do Not Describe Me” Gender Identity Among Women on the Autism Spectrum

By Eva Mendes, MA, LMHC ed here is drawn from Ms. Mendes’ work and Hillary Hurst Bush, PhD with hundreds of women (14-74 years old) with ASD, for diagnosis, individual and couples’ counseling, and in support large number of women with groups. Autism Spectrum Disorder (ASD) are currently undiag- What is Gender Identity? nosed or misdiagnosed. In the AUnited States, for every four males diag- Gender identity is one’s internal, deeply nosed with ASD, only one female is di- held sense of one’s gender. In many soci- agnosed (Centers for Disease Control and eties, people are primed to have a gender Prevention, 2012). While there is likely to identity either as a woman (if they are des- be a true sex difference in the prevalence ignated female at birth) or as male (if they of ASD, females are also more likely to are designated male at birth). When one’s be underdiagnosed with ASD. This may gender identity aligns with the sex they reflect, in part, to a lack of awareness were designated at birth, they are consid- among health professionals and the gen- ered cisgender. However, for some people, eral public about what ASD in women their gender identity may not align with the looks like. In addition to women being sex they were designated at birth. Further, underdiagnosed or misdiagnosed with some people notice changes in their gender ASD, little empirical research currently over time. Regardless of which sex they exists on how they experience their sex- Eva Mendes, MA, LMHC Hillary Hurst Bush, PhD were designated at birth, people may iden- ualities. This is an unfortunate oversight, tify as masculine, feminine, both, neither, seeing that sexuality is common to all hu- ual attraction (Byers, Nichols, & Voyer, Dr. Bush’s survey-based dissertation or as other genders. man lives. However, some of the existing 2013; Gilmour, Schalomon, & Smith, study of multiple aspects of sexuality and In the [Autistic] Women’s Sexuality literature on ASD and sexuality suggests 2012). In this article, our goal is to shed well-being among young women (18-30 Study, participants were asked to describe that individuals with ASD may be more light specifically on the gender identities years old) with and without ASD. Gender their gender identity in an open-ended­ likely than individuals without ASD to of women with ASD, drawing from our non-conforming individuals, including format. Among the 248 participants with identify as a “tomboy” or have a non-tra- research and clinical experiences with au- transfeminine women, were invited to ASD, 50% reported having a non-binary ditional gender identity (Ingudomnukul, tistic women in the community. participate too. In total, 248 individuals gender identity, as compared to only 21% Baron-Cohen, Wheelwright, & Knick- The research findings reported in this with ASD and 179 individuals without of participants without ASD. Aside from meyer, 2007), and to identify as a sexual article are drawn from the [Autistic] ASD participated, for a total sample size minority or experience same-gender sex- Women’s Sexuality Study (Bush, 2016), of 427. The clinical case vignette includ- see Gender Identity on page 25 PAGE 8 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2016

The Initiative for Girls and Women with Autism Spectrum Disorders at Yale

By Kathy Koenig, MSN, APRN tions for parents about social challenges Artworxx, an exhibition of art created by Director, Initiative for Girls and other issues that impacted their daugh- our teens at the Yale Center for British Art. and Women with ASDs ter’s health and happiness. Parents targeted Over 200 visitors attended the opening re- Yale Child Study Center a lack of friends, limited social opportuni- ception and viewed the exhibition. It was a ties, bullying and cyber-bullying, difficulty tremendous success! helping their daughter manage personal hy- For young adults, the Initiative offered n the summer of 2013, a program for giene and self-care, and worries about their Lean Out: Networking and Working for building relationships and promot- daughter’s safety and vulnerability as they Women with ASDs, a program address- ing community for teenage girls and tried to make their way in the world. We ing a significant problem for adult women women with autism spectrum disor- also noted poor adaptive functioning - day with ASDs, finding and maintaining em- Iders began at the Yale Child Study Center, to day living skills - in females with ASD ployment. We used the phrase “lean out” supported by a gift from Jim and Marilyn as compared to their neuro-typical peers. as a bit of a play on Sheryl Sandberg’s Simons. The initiative was conceptual- In a sample of females with ASD culled book, Lean In: Women, Work and the Will ized as a means of bringing together teens from clinic settings at Yale and at Marcus to Lead. Ms. Sandberg’s book described and women, not for clinical intervention, Autism Center in Atlanta, we found that the tough working environment that wom- but simply to offer an opportunity to ex- girls from ages 8 to 18 years of age showed en face in the contemporary era in Ameri- perience the joy of sharing activities and adaptive functioning that was delayed rel- ca, and leaning in means: “being ambitious conversation with friends. At Yale, we ative to typical peers by 2 ½ standard de- in any pursuit.” We thought about leaning recognized that girls and women with an viations (Saulnier et al., 2016). Our focus out as an expression that captures the need ASD diagnosis are often socially isolated. group work and the results of this study to network and build relationships effec- They find it challenging to meet like-mind- have helped us to understand what kinds of tively in order to find and maintain satisfy- ed friends in school or in their community. programs could support teenage girls and ing employment. Lean Out was supported Social programs developed for those with Kathy Koenig, MSN, APRN young women with ASD as they develop. by a community service grant from Au- ASDs often have many more males than Our offerings have varied over time tism Speaks. A major focus was learning females, so girls and women don’t have of youth and families, to advance under- based on the needs and interests of partic- the “soft skills” needed to function in the the chance to develop the kind of close standing of their psychological and de- ipants. We began with a weekly group for workplace, including presenting oneself connections that neuro-typical girls and velopmental needs, and treat and prevent little girls, ages 8 – 11 years, which includ- at the interview and in the workplace, so- women tend to have. All this means that mental illness through the integration of ed art, jewelry making and yoga classes. cializing on the job, and collaborating with girls and women with ASDs end up feeling research, clinical practice, and professional Yoga was particularly successful; our girls others on work projects. Eighteen women lonely and sad. This kind of social isolation training. We care deeply about the lives of enjoyed the focus on the body as well as attended the program, which included pre- results in a poor quality of life for these in- these teens and young adults and are fo- the process of centering oneself. Our teens sentation of important information using dividuals, with concomitant risks to mental cused very strongly on doing what we can got involved in horseback riding, pizza par- visual supports (Powerpoint, workbooks) and physical health. to make their lives healthy and joyful. ties, movies, and a twice monthly art class as well as targeted discussion. A significant At the Yale Child Study Center, our Our program began with a series of fo- taught by an artist from Yale Center for mission is to improve the mental health cus groups for families, with targeted ques- British Art. In May of 2016, we presented see Initiative on page 30 AUTISM SPECTRUM NEWS ~ FALL 2016 www.mhnews-autism.org PAGE 9

The Social Needs of Women on the Autism Spectrum

By Marisela Huerta, PhD a first for them. This then was the re-oc- quickly zeroed in on the lack of social ac- Senior Advisor curring theme of the meeting: that women tivity as their chief need. Rather than de- Felicity House with ASD often feel “alone” and like a mi- scribe the limited availability of clinical nority within a minority group. The wom- services and employment opportunities for en explained that their efforts to socialize adults, the women made a point to describe urrent research on adults with often lead to feeling “misunderstood” all of the social opportunities they had as Autism Spectrum Disorder and “lonely” because they frequently are students and contrast this with their experi- (ASD) without intellectual dis- the only person with ASD or the only fe- ences as adults. Participants identified so- ability suggests that outcomes male with ASD in a given social scenario. cial programming specific to women with Cfor adult women with ASD are especially A number of the focus group participants ASD as most needed, specifically a safe poor relative to those of men (Taylor, Hen- further noted that their social interaction space to pursue leisure interests and build ninger, & Mailick, 2015). These findings “style” has been consistently at odds with social experiences. Many of the women re- stand in sharp contrast to recent findings those of their male peers, making their flected on their own social and communi- that women and men with primary ASD minority status particularly problematic. cation challenges, the difficulties involved are largely similar in symptom presenta- Additionally, as a result of being the to- in interacting with same-age women with- tion (Van Wingjngarden-Cremers et al., ken female in group activities designed for out ASD, and their interest in building their 2014) and that in some affected women, adults with ASD, the women often receive social experience in the context of a sup- the condition may be milder (Wilson et unwanted sexual attention. portive system. al., 2016). What then explains these dif- ferences in outcomes? Are there particular “If autism is a form of the extreme male “At [college name], we had a group where challenges for women on the autism spec- brain, where does that leave women with we would play games…so just to have that trum that are currently being overlooked? autism?” again!” What are the necessary supports for their success? “There’s…a disconnect between what “I have been looking for programs…with Marisela Huerta, PhD society expects of women with ASD and people who are serious about music, draw- From the Perspective what we can do.” ing, creative writing. “ of Women with ASD es in ASD, their experiences of being on the spectrum, and their sense of the current “In the support groups for ASD, it’s either “We need opportunities to build “real” so- As part of the development of Felicity gaps in services. The resulting discussion get hit on or be seen as an alien!” cial connections…” House, a new program for adult women highlighted the current gaps in communi- with ASD, focus groups with key stake- ty-based adult programs. “I don’t know how to meet people.” “…led by someone without ASD, to be holders were conducted to identify the The focus group participants immedi- able to stop (us) from speaking too much, specific needs of this population. Women ately commented on how “different” and “I’ve had bad (social) experiences.” making sure everyone has a turn” on the autism spectrum were invited to dis- “nice” it was to be in a room full of women cuss their perceptions of the sex differenc- on the spectrum. Many shared that this was Most striking was that the participants see Social Needs on page 30 PAGE 10 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2016

Advice from page 1

spectrum are males. 2) Wondering, “Were my struggles hor- monal chatnges or the autism spectrum in me?” During puberty, I was actually put on meds that I didn’t need, and eventually re- alized it was more of an emotional regula- tion thing due to puberty than it was ASD. No one considered that it was a bit of both. 3) Doing girly stuff that has sensory consequences. I thought nail polish and makeup was pretty, but sensory wise I felt so uncomfortable wearing it. If my make- up did not look like a magazine model or one eye was darker than the other, I would have to wash my face and repeat the pro- cess over and over. I would usually get so frustrated that I would remove it because it caused anxiety to go out in public with it. CIP Brevard Student Q. What helped you get to the point where you were comfortable with makeup? Stephanie Smith shares insight and advice as a young woman A. I had to deal with my perfectionist is- sues and I really needed practice. Then I on the autism spectrum started to find makeup fun and I liked put- ting pretty colors on my face. My advice: suggest first observing how the co-work- Don’t wear makeup because you think ers are communicating; you can observe boys will like you and you need to fit in what coworker has what type of personali- with other girls. If it’s truly a sensory issue ty. You have to learn their interest. for you, don’t do it. Let makeup be your choice - makeup cannot make you beauti- Q. What does self-confidence mean to you? ful on the inside. A. To me, it is being aware of your Q. What in particular have you found chal- strengths and weakness and being proud lenging in transitioning to adulthood? of your strengths and acknowledging your weaknesses because you have to know A. 1) My parents not trusting me. To this what they are. Acknowledge strength, ac- day, they still feel like they have to pro- knowledge weakness and embrace both as tect me. I have a neurotypical sister and I a young woman. notice that they don’t protect her as much. 2) Figuring out what is appropriate to Q. What does a self-confident woman look say in social situations. I still need help to like to you? figure out boundaries with different peer groups. Now that I’m in the workplace, I A. I have a girlfriend named Lauren who notice that there is a lot of different lev- knows where she is going and knows that els of social engagement and it’s difficult she has a place to go. She’s happy in rela- sometimes to figure out what information tionships and content with her life. Con- you can share with each person. I quick- tent is the big word because that gives ly noticed this the other day when I told them strength to help their friends. my supervisor something that I thought was funny and her response was that was Q. What does the term self-esteem mean too much information, but if I told my to you? co-worker the same story she probably would have laughed. A. Being proud of who you are, what you are, and the components that make up that Q. How do you cope with or handle that whole self. particular challenge as a female? Q. How might you support to another young A. Sometimes I will ask people, “Am I woman struggling with her self-esteem or being inappropriate?” and if someone self-image? What might you tell her? gives me feedback like that’s TMI, I will thank the person for their honest feed- A. It’s important to praise and empha- back and let them know it helps me. I size good qualities in people because not don’t want people to gossip about me. everyone has the talents that you have but everyone does have a talent and the Q. What would you suggest as a coping ability to be great, it just takes time to mechanism for other young women who see it. Many ASD young adults are dis- might experience that challenge? gruntled because society has their idea of good, but our good may be something A. Don’t do this during a job interview, but really special within the situations we maybe on your 1st or 2nd day go to your deal with, such as finding housing and coworkers or supervisor and don’t fully who is going to support us. This some- disclose your challenges, but say in a fun times does not allow us time to explore way, “I can sometimes be a little social- our special traits. ly awkward” or “I have social anxiety, so People on the spectrum often have spe- please let me know and give me feedback - cial interests and we need to highlight that it is really helpful to me.” You also have to there is a place in this world for them. read their body language; is this someone These people have talents and abilities and you can have this conversation with? I’ll passion that are lacking in neurotypical use a first impression or judge their char- people, like Temple Grandin and her acter as to gauge how much personal in- formation I will share with someone. I also see Advice on page 20 AUTISM SPECTRUM NEWS ~ FALL 2016 www.mhnews-autism.org PAGE 11

Women at Work

By Marjorie Madfis to our customers. This gives them the op- President, Yes She Can Inc. portunity to talk about the product with the little girls and their moms and grand- mothers, and to assist the girls at the craft hen I founded Yes She Can workshops where trainees can be leaders. in November 2013 I creat- Being the expert is a rare experience for ed the motto: Women with our women. Autism. We work. With you. Our trainees say they can be more re- WIt was my vision that with proper training laxed without the concern of young men and support, women with autism could and around them and focus on the skills. The should join the competitive workforce and job coaches can also be more direct in work side by side with neuro-typical peers, coaching on behaviors. So while our all-fe- whether it were shelving books, creating male training place may not reflect all software code, or selling dolls. Back in the workplaces, we do think it is a good learn- spring of 2014 I introduced the readers of ing environment. Autism Spectrum News to our job skills development program run at Girl AGain The Women’s Card boutique. We had only been open for two months so I had little actual experience in As we know, neuro-typical women’s achieving my vision. behavior and presentation is judged more Now two and a half years later, Yes She harshly than men. This seems no differ- Can has worked with 22 women with au- ent for women with autism: clothing, hair tism spectrum disorders and related social style and accessories, weight, table man- and learning disabilities; many also have ners, topics of conversation, and posture intellectual disabilities. and presence are held to a higher standard Like their neuro-typical peers, our train- Izzie and Julia preparing doll outfits for sale at Girl AGain than men. A “quirky” even rude man with a ees truly desire to be independent. They stained shirt is acceptable to his work peers want to work for money, and can - even if Given their social and emotional chal- ing to stretch. while an “odd” women with sloppy table it is for just 15 hours a week. Women tran- lenges, the women we serve need a safe Typically at school, girls are the mi- manners who stumbles at chit-chat is re- sitioning from school to adulthood need to and supportive environment to begin their nority in co-ed special education classes, jected by her work peers. I have heard sev- stretch, take risks, try and possibly stum- exploration of their capabilities. They also where the boys’ agenda can overwhelm eral women with ASD report that they be- ble, and learn how to recover. They need need an environment where they can con- the girls’ needs and interests. At our train- lieved they were fired because of a social to transform from dependent students and nect with other women who share their ing program at Girl Again, not only do we faux pas that would be tolerated of men. social service “consumers” to confident challenges - where they can “be them- focus on women’s issues but also our store problem-solving women. selves,” as one trainee put it, while learn- caters to girls, so our trainees can relate see Work on page 28 PAGE 12 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2016

Services from page 1 It is important to acknowledge this worry in families. It is imperative that staff mem- 5) We emphasize the importance of teach- bers be trained in ways that reduce this ing an individual to be a good advocate likelihood and that enhance independence for himself or herself. When someone can and self-advocacy in females with autism. report a violation, he or she is less likely We have shared some of the policies that to be victimized. We teach this skill even have assisted us in meeting the needs of fe- to our non-vocal program participants, males with autism, respecting the families’ and we believe it is an essential focus for wishes, and preparing staff members for all learners. the challenges and sources of discomfort associated with providing personal care. 6) We train EVERYONE in our settings It is important for all of us to share our to stay alert and to be aware of odd in- struggles and our solutions, so that more teractions between any client and any organizations can thrive and provide clear care giver. There are some behavioral information to families, and so that more indicators that an individual (even those individuals with autism are protected from that are not able to verbalize) has been abusive and inappropriate conduct by staff victimized in some way–whether it be member, and so that all individuals with physical or verbal. It is important to cre- autism are provided with safe, humane, ate and foster a culture where staff mem- and effective treatment. bers are advocates for the clients, so that if something odd is observed, it will be Sandra A. Rogers, MS, BCBA Mary Jane Weiss, PhD, BCBA-D Sandra A. Rogers, MS, BCBA, is Di- reported immediately. rector of Adult Behavioral Services at al care many times a day from multiple “boyfriend/girlfriend,” and do not have Melmark Pennsylvania, and Mary Jane 7) All staff members are Mandated Report- staff members. It is also difficult to teach the mental capacity to understand why that Weiss, PhD, BCBA-D, is Senior Director ers and are thoroughly trained about these stranger danger, because turnover rates in is not appropriate. of Research at Melmark. The mission of obligations. most facilities are pretty high and there is Finally, we teach individuals with dis- Melmark is to serve children, adults and a constant cycle of new staff or over time abilities to be compliant with directions, their families affected by a broad range of 8) If a client expresses that he or she pre- staff that primarily work in other environ- which may inadvertently make it difficult intellectual disabilities. With service divi- fers female/male staff members, then we ments. Often, a client may only have been to identify situations in which inappropri- sions in Berwyn, Pennsylvania, and An- try to make every attempt to honor that. introduced to a new person briefly before ate conduct is taking place or in which dis- dover, Massachusetts, Melmark provides that person is assisting them with toilet- comfort is being experienced by the client. evidence-based educational, vocational, In addition, we try to focus on safety ing/showering/etc. In addition, there are It is imperative that we do more to teach clinical, residential, healthcare and reha- and risk in our curricular programming. a number of additional factors associated these learners when it is ok not to comply bilitative services, personally designed for However, there are real challenges to this with adolescence that make these chal- with a request. each individual in a safe environment of goal. First, it can be difficult to convey lenges even more significant. Young ado- Learners with autism are a vulnerable warmth, care and respect. For more infor- an accurate concept of privacy, when the lescent clients may experience “crushes” population of individuals, and females mation, please visit www.melmark.org and individual served is assisted with person- or attraction to care givers, may call them with autism may be the most vulnerable. www.melmarkne.org. AUTISM SPECTRUM NEWS ~ FALL 2016 www.mhnews-autism.org PAGE 13

“Give a Spit” to Help Scientists Uncover the “Female Protective Effect” for Autism

By The Autism Science Foundation The project is being overseen by a scien- tific advisory panel led by Joseph D. Bux- baum, PhD, Director of the Seaver Autism or years, we’ve known that four Center at the Icahn School of Medicine at times as many boys as girls are di- Mount Sinai, along with experts in genet- agnosed with autism. More recent- ics, statistical genetics, epidemiology, and ly, genetic research has surprising- ASD clinicians. Fly shown that the various genes that cause “We’re learning more and more about autism are equally distributed in boys and how autism affects males and females girls. So what explains this difference - differently, as well as the underlying fac- why do some girls who have the exact tors behind these differences,” said Aly- same autism genes as their brothers never cia Halladay, PhD, chief science officer develop autism? What protects them? of the Autism Science Foundation. “This To find the answers to these critical is an exciting and promising opportunity questions, the Autism Science Foundation to leverage that understanding for deeper - a not-for-profit organization dedicated to research into potential factors that could supporting and funding autism research - have a significant impact on the lives of has launched the Autism Sisters Project, a many people with autism. Right now, the search for what is referred to as autism’s limiting factor is a lack of genetic data. “female protective effect.” The Autism Sisters Project will help elim- The Autism Sisters Project will give un- inate that barrier and rapidly move the sci- affected sisters of individuals with autism ence forward.” the chance to play an active part in accel- ing part is easy and painless. All the sib- and whose brother Tommy has autism. “By “The female protective effect is a very erating research into the “female protective lings need to do is visit the Seaver Center participating in the Autism Sisters Project, important area of investigation in the au- effect.” The goal is to build a large genetic at Mount Sinai Hospital in Manhattan, play I’m getting one step closer.” tism research community and the Autism database that researchers can use to ex- some simple thinking and language com- The important genetic information Sisters Project is going to jumpstart the plore this phenomenon and discover how puter games, take part in a basic assess- that will be gathered from these new ge- process of developing a necessary cohort the protective factor can be harnessed to ment and then spit into a test tube. There’s netic samples will be added to informa- of unaffected female siblings,” said Dr. help people with autism of both genders. no blood test - all the DNA is collected tion from earlier studies that included a Buxbaum. “I, and all my colleagues at Once scientists know what causes that pro- through that saliva sample. The researchers non-diagnosed sibling. By pooling all Mount Sinai, are thrilled to be partnering tection or resilience, they may be able to will take care of the rest! this information, scientists will be able to with the Autism Science Foundation on develop new drugs or therapies. “I don’t want to change my brother, but study the “female protective effect” much this initiative. This is an enormously ex- Here’s how it works: the Autism Sisters if there was something that I could do to more quickly and efficiently. The more in- citing opportunity for sisters of individuals Project is seeking families that have a child help him, I know I definitely would,” said formation researchers have to work with, with autism and an unaffected sibling. Tak- Evee Lopes, who participated in the study the better. see Give a Spit on page 25 PAGE 14 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2016

On Being a “Unicorn”

By Becca Lory, CAS late in life because their sons get diag- day. I rather enjoyed thinking of myself as Director of Development nosed first. Tired of describing the clear a rare mystical creature, for a while. GRASP difference between the male and female Years later, the idea of being so very dis- phenotypes we see repeatedly in the ASD tinctive has lost its shine. Because the truth community. And mostly, I was tired of is, I am not a unicorn, let alone a unicorn “Tell me and I forget. being reminded how little this part of our of unicorns. In fact, there are more and Teach me and I remember. community has changed regardless of how more females on the autism spectrum get- many mountain tops the female autism ad- ting diagnosed, speaking up, demanding Involve me and I learn.” vocates scream from. that our voices be heard and that our needs Benjamin Franklin When I was first diagnosed at age thir- be met each year. We live in the shadow ty-six with what was then called Asperg- of what once was believed to be a child- er Syndrome, I remember the relief. The hood male disorder. The idea that autistics sually writing comes easily to sense of belonging. The very fresh eyes would grow up, grow old and not just be me. It’s one of the unexplain- as I began to understand myself for the capable of but desire a successful and hap- able gifts that comes with my first time. I also remember a clinician who py life is just now being addressed. Within autistic brain. I fully expected was so excited to meet me because meet- the autism community, the very notion that Uthat I would sit down in front of the screen, ing an adult female diagnosed late in life someone would want to cure autism, a very access my encyclopedia-esque brain, and was such a treat. I remember the words important core piece of your personhood, bang out this article in an afternoon. After that were used. “You are the unicorn of is barely ever mentioned anymore. We talk all, the topic of females on the spectrum is unicorns,” she said. As a female diagnosed about inclusion, diversity, supports, chal- not just something I do for work every day after age thirty, having nothing to do with lenges, and life planning. Still, the moun- but it IS my every day. My every single a spouse or a son, to her, I was a mythical tain that is the female autism phenotype waking moment is being a living, breath- beast that is rarely sighted and even more has barely begun to be traversed. ing woman on the autism spectrum. rarely captured alive. We have long conversations about how Day one passed without a word written Becca Lory, CAS At the time, I was honored to be con- women on the spectrum present different- and I just thought, “Oh I must be tired. sidered so unique. Unicorns are magical, ly than men and why. We talk about how Maybe it was a bit of a sensory overload Why with this topic that I live and breathe mythical creatures known for their gentle, the evaluation and testing materials are day yesterday,” so I waited. Day two, I kind daily was I struggling to get my thoughts intelligent and, YES, empathic nature. Not skewed toward young males. Yet we are of knew what I should say but it didn’t feel on paper? And then it finally occurred to to mention their ability to heal. They have stuck in the 4:1 male to female ratio the right. So, I left my background program me. I was tired. made their way through time from the An- CDC published years ago though it likely running and decided to try again tomorrow. Tired of repeating the same things over cient Greeks to modern science fiction. is not representative of the actual popula- On and on for a week straight, I tried to and over again. Tired of advocating to deaf There is even a well-known legend that tion as many women live their entire lives write with no success. The blank page in ears about the challenges women on the when Noah gathered two of every kind without ever receiving a formal diagnosis. front of me never filling with words. My autism spectrum face. Tired of reminding of animal, he neglected to gather the uni- default setting was corrupted but why? people how many women are diagnosed corns, which is why they do not exist to- see Unicorn on page 23 AUTISM SPECTRUM NEWS ~ FALL 2016 www.mhnews-autism.org PAGE 15

Sex Differences in Autism: A Treatment Perspective

By Tom Cariveau, PhD, BCBA-D, similar conclusion was reported in a review M. Alice Shillingsburg, PhD, BCBA-D, of 5 meta-analyses on the effectiveness of Caitlin Delfs, PhD, BCBA-D, Early Intensive Behavioral Interventions and Lawrence Scahill, MSN, PhD, for children with ASD (Reichow, 2011). In Marcus Autism Center and the absence of larger samples of girls with Emory School of Medicine ASD in treatment studies, it is unclear how girls respond to the currently available evi- dence-based interventions. ex differences in prevalence have Given the current state of knowledge, we been reported in several mental can either assume that there is no differ- disorders. For example, the preva- ence in treatment response in girls or begin lence of trichotillomania, anorexia a line of research to test this assumption. If Snervosa, and bulimia nervosa are reported we assume no difference based on sex, we to be as much as 10 times more common simply accept that the results of empirical- in girls than boys (American Psychiatric ly supported treatments apply to boys and Association, 2013). By contrast, autism girls. However, if there is reason to believe spectrum disorder (ASD) is reportedly four that girls may respond differentially to spe- to five times more common in boys com- cific interventions, it may be informative to pared to girls (Baird et al., 2006; Centers enroll female-exclusive samples into treat- for Disease Control and Prevention [CDC], ment programs with demonstrated efficacy 2016). The accuracy of this ratio has been in boys. With support from the Autism Sci- questioned with some authors citing the Chakrabarti, & Knickmeyer, 2011). example, we tallied the male:female ratio ence Foundation, we are about to launch an potential gender bias in diagnostic instru- In the 2007 report by the CDC, the prev- in five federally-funded multisite trials in evidenced-based social engagement inter- ments as many of the measures were de- alence of ASD was 1 in 150 children (CDC, children with ASD (Aman et al., 2009; vention in girls with ASD (Shillingsburg, veloped and standardized in predominantly 2007). The current prevalence estimate is 1 Bearss et al., 2015; King et al., 2009; Re- Bowen, & Shapiro, 2014). We hope that male samples (Kreiser & White, 2014). In in 68 children (CDC, 2016). Despite the rise search Units on Pediatric Psychopharma- other treatment programs will pursue this addition, behavioral characteristics such as in the estimated prevalence, the male-to-fe- cology Autism Network 2002; Research line of research in order to promote our un- stereotypic and disruptive behavior may be male ratio has remained remarkably consis- Units on Pediatric Psychopharmacology derstanding of girls with ASD. more pronounced in boys, which may in- tent (see CDC, 2007, 2016). Current preva- Autism Network, 2005; Scahill et al., crease the likelihood that boys will come to lence estimates are 1 in 42 for boys and 1 in 2015). Across these trials, there were 682 Tom Cariveau, PhD, BCBA-D, is Post- clinical attention (Mandy, Chilvers, Chow- 189 for girls – nearly 5:1 (CDC, 2016). participants (age 4 to 17 years); 585 were doctoral Psychology Fellow, M. Alice Shil- dhury, Salter, Seigal, & Skuse, 2011). On If these prevalence estimates of ASD boys and 97 were girls. Given the relative- lingsburg, PhD, BCBA-D, is Assistant Pro- the other hand, others contend that male in boys and girls are accurate, then the ly small number of girls in each study, it fessor of Pediatrics, Caitlin Delfs, PhD, gender increases the risk for ASD (Bar- male:female ratio in several large-scale was not possible to evaluate sex as a mod- on-Cohen, Lombardo, Auyeung, Ashwin, clinical trials is indeed representative. For erating variable in any of these studies. A see Perspective on page 29 PAGE 16 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2016

What Happened to All the Females with Autism Spectrum Disorders?

By David H. Skuse, MD, FRCP of autism spectrum disorders in school age comprising social communication defi- Head of Behavioral and Brain Sciences over the period from 2007 to 2014 (Blum- cits, and repetitive/stereotyped interests Institute of Child Health, London berg et al, 2013; Zablotsky et al, 2015). and behaviors, with sensory sensitivities. This survey reflected diagnoses that were If there are girls out there in the general provided to families by paediatricians population with these characteristics, who he concept of an autistic disor- from around the United States. The figures have not been diagnosed, how would we der is generally accepted to have show the expected rapid increase. They recognise them? If there really is an ascer- originated with Leo Kanner and also reveal that by far the greatest change tainment bias, one possibility is that those his classic 1943 account of ‘Au- has been among children in mid to late females with higher IQ, especially verbal Ttistic Disorders of Affective Contact’ adolescence, the great majority of whom IQ, are able to disguise their symptoms (Kanner, 1943). He described 11 children do not have severe to profound learning – a process that is known as ‘compensa- with what would now be regarded as se- disabilities. This increase in ascertainment tion’ (Lai et al, 2011). The motivation for vere autism. Three of these 11 were girls, has been predominantly of boys. By 2012 compensation comes both from influenc- and as children their symptomatic profiles about 1 in 30 boys in the USA had been es that are common to all females. These were very similar to those of the boys. It is given a diagnosis of an ASD, compared include, first, a biologically engendered less well-known that he conducted a fol- with just 1 in 140 girls. In 2014, there greater awareness of other females’ social low-up study in 1971, and discovered that was a change in the way the telephone behaviour, plausibly related to the posses- all those girls were in State Hospitals, vir- survey was conducted. That change led sion of a second X-chromosome (Skuse, tually uncommunicative to both staff and many children who had previously been 2000) and, second, the influence of so- their families (Kanner, 1971). As diagnos- categorized as having primary generalized cialization pressures that have evolved in tic criteria developed, and standardized in- developmental delay to be reassigned to concert with those biological differences struments were devised to measure autistic an ASD category. Reassignment impact- (Adler et al, 1992). Clinical experience traits, Kanner’s male-typical template – ed primarily on girls, where prevalence of interviewing many ‘high-functioning’ associated with severe to profound learn- jumped over 60% from the 2011-2012 fig- females with ASD in the UK confirms a ing disability - was used for validation. David H. Skuse, MD, FRCP ure (compared with a mere 2% increase in widespread ‘wish to act normal’ which is For many years, diagnosticians regarded boys), and the findings have two signifi- not so prevalent among affected males at the typical child with autism as male with only 2:1. Leading clinical centres in the cant implications. First, ASD is still dis- any age. generalized learning difficulties. A high USA have almost never diagnosed ‘high proportionately recognised in boys; girls As we lack a biomarker for ASD, the op- proportion were reported to have associ- functioning females’, so in North America in adolescence are rarely newly diagnosed portunities to validate the hypothesis that ated neurological complications such as there is a dearth of research on girls and (at least, in the USA). Second, there is a there is a large number of undiagnosed early developmental regression and/or women with autistic traits whose verbal persisting tendency to recognise autism in females with ASD seem limited. One ap- epilepsy. The male:female ratio is widely IQ is above average. girls only if it is associated with general- proach we have taken is to evaluate ASD found to be 4:1 in ascertained cases, a fig- Recent epidemiological evidence from ized developmental delay. traits by screening a general population ure that disguises the remarkable fact that the National Center for Health Statistics The DSM-5 defines two dimensions among those with very low IQ the ratio is reports changes in the apparent prevalence of impairment associated with an ASD, see Females on page 28

A Support Group for Parents of Tween Girls with Autism Spectrum Disorder

By Erika Drezner, LCSW In the fall of 2014 we launched three par- quite significant. For example, while there Director of Programs for ent support groups, including the group were parents in the group who were very Child and Teen Services for parents of girls. While the other two worried about how to address their daugh- Asperger/Autism Network (AANE) groups which were open to parents with ter’s first menstrual cycle, there were many male or female children filled quickly, the parents for whom this milestone was in the parents of girls group had to be delayed past. The variety of experiences meant that he gender imbalance among those by a month to give it time to meet the these parents could advise one another diagnosed with autism spectrum minimum number of participants to run. based on their own experiences. disorder (ASD) is 4 to 1 boys to We generally advertise our programs by As the leader, I felt it was important to be girls. When considering those di- email. In this case, I made personal calls flexible, so I discarded my curriculum and Tagnosed with ASD without intellectual dis- to those who attended the previous events addressed the issues that surfaced naturally. ability, the imbalance is even greater - 7:1 and were eligible for the group based on The parents’ concerns were very much in (Skuse & Mandy 2015). One consequence their daughter’s age. I also made the de- keeping with the growing literature about of this gender imbalance is that parents of cision to run the group on the weekend, females diagnosed with autism without in- girls with ASD often find themselves with- rather than an evening during the week, so tellectual disability; mental health issues out a supportive community. Girls with that parents from outside the surrounding came to forefront rather quickly (Manda- ASD not only present differently from boys area could attend. While the majority of villi 2015). Most parents expressed con- with the diagnosis, they also face unique attendees were local, we did have parents cern about their daughter’s emotional regu- challenges as females (Faherty 2002). who traveled over an hour to attend the lation and anxiety. Related issues raised by Parents of girls find that, within the ASD group. Even within a major metropolitan the group included school refusal, self-in- parent community, they are in a distinct mi- Erika Drezner, LCSW area - we are located just outside of Bos- jury in the form of cutting, and depression. nority. Turning toward the parents of neu- ton - it took some flexibility to initially fill As with any support group, members were rotypical girls for support may not create a for parents of girls. We held an informal the group. able to normalize experiences they per- great fit, as parents find that their daughters discussion night in which staff members I began the group thinking that it would ceived as shameful by sharing them with may need a different kind of help to support who had daughters with ASD lead a dis- be psychoeducational and planned for each others and learning that they were not the their daughters as they face the challenges cussion specifically for parents of girls meeting, with topics and resources ahead only families with these issues. of growing into young womanhood. ages 18 and below. That event was fol- of time. I imagined that parents of females The sense of parental isolation was quite A recognition of this led to the creation lowed by a book talk by Eileen Riley-Hall, who were on the cusp of adolescence would striking. While some parents had daughters of a support group for parents of tween author of Parenting Girls on the Autism want information on puberty, hygiene, and who were diagnosed young, many had been (ages 9-13) girls with ASD. The group has Spectrum. The turnout and enthusiasm for social skills. While it was the case that diagnosed quite recently. Because we do run successfully for two years and has now these events led us to believe that parents most group member were struggling with not require that participants in any of our been expanded to include parents of teen of girls needed more services geared spe- some of these issues at home, it was clear programs or services have a formal diagno- girls as well. Prior to the group launch, cifically for them. that they did not need a curriculum. Even sis, there were participants who were in we attempted to gain a sense of whether In spite of the enthusiasm the parents though their daughters were close in age, there was a need for this kind of support had indicated, the group was slow to start. the variation in physical development was see Support Group on page 26 AUTISM SPECTRUM NEWS ~ FALL 2016 www.mhnews-autism.org PAGE 17

This Boy Jack middle school that was built in 2007 and is similar path. Now she has to pluck one of attached to the high school and meet your her ducklings out of line, and send him off new teachers. You will eat your lunch in the to a school ten miles in the other direction t’s August now. The days are still long cafeteria and check books out of the library, all by himself. and hot and humid, but there is a tinge and in this middle school, you will start to This school, it only has thirty-five kids. of autumn in the air, especially at dream of your future, grown-up selves. It is mostly boys with just a couple of girls. night. Most of you are starting to think Maybe you will dream of becoming as- There is no cafeteria. There is no big bus. Iabout school again. You are reading over tronauts, or ballerinas, or teachers or gar- On the first day of his school, this boy your supply list for seventh grade and won- deners or lawyers. Or of moving to Flori- Jack will climb into a minivan that has a dering if your new teacher is nice or strict. da, or flying a plane, or backpacking across sign attached to the top of it. The sign says I wonder if you remember a boy named Europe. This boy Jack, well, he just dreams School Bus, but it isn’t really a bus. Jack from last year. He’s tall, and he of being normal. This is what hurts the mom’s heart the wears glasses, and sometimes he jumps He dreams about being like each one of most. It hurts her the most because she re- around a lot. He bought his lunch from the you, with your easy smiles and your calm, members when Jack started first grade and cafeteria every single day. For the annu- still bodies. He dreams of shedding his he insisted on riding the big bus like his al science project he made an experiment autism the way a caterpillar sheds his co- older brother, Joey. He didn’t talk as well with cotton candy to see if it would dis- coon and turns into a bright, incandescent then but still, they knew what he meant. solve in water. A lot of times he got mad. butterfly. “Big bus like Joey. Ride big bus.” He got mad about the computer, about Jack is not coming back to public school But it’s time. This mom, she knows this. recess, and about the complicated tangle Jack Enjoying Summer Vacation this year. She knows that if she continues to clutch of friendships his spectrum brain could Over the summer, his mom and his dad her dreams too tightly in her fingers, they not unravel. He screamed swear words. He you felt a little sad for him. spent a lot of time researching academ- will disintegrate like the luminous wings threw books. He banged his head on the He hates himself for that. He hates ic options and meeting with people for on her fragile butterfly. They will lose wall and flapped his hands around his ears. himself for the room-clearing and the an out-of district-referral. This was very their color, and their softness, and turn to Sometimes when he got mad, the teachers book-throwing and head-banging. hard for them. They never imagined their dust. She has to let her dreams breathe, and had to take all of you out of the classroom Have you ever hated yourself? Have you son would not make it in public school. move, and change. so he could try to calm down by himself. ever been so embarrassed and ashamed of Their son is not making it in public It is time to accept what is before her and Maybe this made you nervous. Maybe the way you acted that you felt dark and school. look at what’s ahead of her and be willing you exchanged looks with each other as empty and all alone inside? And the mom, well, she has tried to avoid to consider a different boy and a different you filed out into the hallway. Maybe you This boy Jack, he feels that way a lot of this solution for as long as she could. See, school and a different life. worried about him, or you were scared of the time. she has five kids and she always pictured him. Maybe you knew about his autism so In a few short weeks, you will go to the them like five little ducklings walking a see This Boy on page 22

Former Behavioral Healthcare Executive with LFACHE and Board Chair Experience Seeks Positions

Behavioral Healthcare Consultant or “What Color is Monday?” “Someone I’m with Has Autism” Interim Executive Director Now Available! Follow Carrie’s blog posts and heartwarming books: Email: [email protected] carriecariello.com facebook.com/whatcolorismonday Please include your phone number amazon.com/Carrie-Cariello/e/B00J2N0CBI/ PAGE 18 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2016

How Autism Manifests Differently in Girls: What Families Need to Know

By Lauren Agoratus, MA pathy as boys, but not the same as typical- Family Voices, NJ ly-developing girls. They want to socialize and Myriam Alizo, BS more than boys with autism, and have high- Statewide Parent Advocacy Network er rates of depression and suicidal thoughts as teens. Preliminary research shows that the hallmark “brain differences” in autism ccording to the Centers for Dis- vs. typical peers seems to hold true for boys, ease Control and Prevention but not girls. A new forthcoming study by (CDC), in 2010 The Autism Kevin Pelphrey, PhD, director of the Au- and Developmental Disabilities tism and Neurodevelopmental Disorders AMonitoring (ADDM) Network released Institute at George Washington University, data that showed “ASD prevalence…was will discuss “Listening to our Daughters 4–5 times higher among boys than girls” (and their Sisters): Insights from the Study (http://www.cdc.gov/mmwr/preview/ of Girls and Women Living with Autism,” mmwrhtml/ss6302a1.htm). Questions re- and is available in as archived webinar at main as to whether there is a bias towards www.IANcommunity.org. males, how autism is seen differently by gender, and why girls are diagnosed later. Diagnosis of Autism in Girls

Are There Really More Boys It is noted that “Girls with autism may Than Girls with Autism? be harder to diagnose for several reasons, including criteria developed specifically It does seem that autism affects boys around males” (http://www.scientificamer- more often; however there are several vari- Lauren Agoratus, MA Myriam Alizo, BS ican.com/article/autism-it-s-different-in- ables that need to be considered. Health girls/). Furthermore, “criteria for diagnos- disparities and poorer outcomes occur for health outcomes. Differences in autism ing symptoms “including fewer restricted ing autism spectrum disorder (ASD)—are both boys and girls in underserved popu- symptoms by gender are another determin- and repetitive behaviors and externalizing based on data derived almost entirely from lations. Specifically, “black and Hispanic ing factor. Lastly, research shows that girls behavioral problems in females” (http:// studies of boys” (Ibid.). Sometimes girls are children were less likely to have a first in general are diagnosed with autism spec- www.ncbi.nlm.nih.gov/pmc/articles/ misdiagnosed with other conditions such as evaluation by age 36 months” (http://www. trum disorders later than boys. PMC4164392/). Social factors make it ADHD, OCD, or even anorexia. Girls are cdc.gov/mmwr/volumes/65/ss/ss6503a1. harder to diagnose autism in girls and they often diagnosed with autism 2 years later htm). This means that children are diag- Autism Symptomology in Girls may need to have more behavioral issues than boys (http://www.theatlantic.com/ nosed later, or misdiagnosed, and miss or cognitive disability than boys in order to notes/2015/10/autism-women/412270/). out on early intervention from birth to age Studies have shown that there is a “male be diagnosed. Girls with autism may score three. Early intervention results in better bias” in diagnosing autism due to differ- the same on indicators of friendship or em- see Manifests on page 27

How Gender Differences Influence the Needs of Girls on the Autism Spectrum

By Daniel Crofts, MA But without it, the teacher might be tempt- to consider the social issue, I want to Day Habilitation Assistant ed toward a common stereotype – namely, focus on one major difference between Genesee County Chapter NYSARC that girls make much ado over nothing and neurotypical boys and girls cited by Sax are emotional to the point of irrationality. (2005): “Researchers at Cambridge Universi- have often argued – and will never tire The Importance of Gender Considerations ty wondered whether female superiority of arguing – that people on the autism in Autism Spectrum Disorders in understanding facial expressions was spectrum are human first, rather than innate or whether it developed as a result primarily autistic. Being human means All this said, how is the gender question of social factors[.] (. . .) [They] decided to Imany things, but we shouldn’t forget one relevant when it comes to dealing with au- study newborn babies on the day they were of its most fundamental aspects: Relating to tism spectrum disorders (ASDs)? Consider born. (. . .) The results of this experiment the surrounding world through our bodies, Mandavilli’s (2015) insights on this matter: suggest that girls are born prewired to be wherein lie the senses and perception. “Even after a girl [on the autism spec- interested in faces while boys are prewired To have a body is, in turn, to have a gen- trum] gets the right diagnosis, she may be to be more interested in moving objects. der. Recent years have seen some intrigu- offered (. . .) essentially the same services The reason for that difference has to do ing research on differences between boys offered to a boy in the same situation. with sex differences in the anatomy of the and girls in terms of how they learn, think, Scientists and service providers rarely ac- eye (p. 18-19, italics included).” perceive the world, etc. knowledge the additional challenges being This may explain why social interac- Before proceeding, I need to be crystal female may bring, whether physical, psy- tion is, on average, more important to clear about something. The “differences” chological or societal. (. . .) Advocates and girls than to boys. All human beings are of which I speak are not value differences scientists in other disciplines have run up social creatures (however widely socia- that justify gender stereotypes. They do not against and resolved many of these same bility may vary from person to person); make either gender superior or inferior to problems, but in autism, the fact that but the friendships of boys and men tend the other. Rather, the differences between boys and girls are different is sometimes to center around shared activity (hearken- the sexes complement one another to make Daniel Crofts, MA treated as if it’s a startling new discov- ing back to the fascination with motion), a complete and rich human tapestry. ery (para. 10, bold added).” whereas girls and women tend toward If we do not take these differences into turb his female students, thus interfering To be sure, the unique needs of ASD fe- more person-centered relationships (fa- account, this can paradoxically lead to with their learning. males are many. But given limited space, cial focus). stereotyping and to the shortchanging of Let’s say the girls voice their concerns I want to focus on a need that stands out From what I have been able to gather, boys, girls, or both. in this matter. Imagine the danger inherent most powerfully: Social life. girls on the autism spectrum are no differ- As an example, consider the fact that in the teacher’s unawareness of this im- ent from their neurotypical counterparts in girls tend to have sharper hearing than portant perceptual difference in girls. With Face vs. Motion: this respect. Center for Autism and the De- boys (Sax, 2005, p. 17). A teacher who such awareness comes an understanding Perception and Social Skills veloping Brain at Weill Cornell Medical speaks in an above-average tone of voice that they are responding to a very real, and that no boy ever finds troubling may dis- understandably upsetting, phenomenon. In order to lay a foundation from which see Differences on page 22 AUTISM SPECTRUM NEWS ~ FALL 2016 www.mhnews-autism.org PAGE 19

The Challenges of Adolescence for Females with ASDs

By Elena Zaklis MA, BCBA particular preference begin to discuss the and Rory Panter, PsyD different choices that are available. Plan Behavior Therapy Associates in advance to try out the several different types so that she can chose a style that she is most comfortable with wearing. Chose pproaching adolescence can be an environment in which she is most com- a challenging time for many fortable and will allow her to experience individuals. The challenges are success when practicing wearing the item. certainly different for each gen- Keep in mind information and skills may Ader and females with Autism Spectrum not be learned the first time, therefore Disorder (ASD) may experience these multiple repetitions may be needed to en- challenges in a unique way compared to sure skill acquisition (Nichols et al 2009). their neurotypical peers. The uncertainty Consider your environment in advance: do of the physical changes that are happening you need to practice in the comfort of your to their bodies and how to cope with those home or in a fitting room at the store? Pre- changes can cause stress and anxiety for pare by using visual supports such as pic- many teens. While families are often well ture cues or written words to help teach the prepared for helping their daughters transi- steps. Think about the teaching techniques tion to various developmental stages, from that are most effective with your daughter kindergarten to elementary school, many and use those strategies. Some strategies females find themselves unprepared when to consider may include behavior chaining transitioning to adolescence and approach- Elena Zaklis MA, BCBA Rory Panter, PsyD techniques (e.g., backward chaining, for- ing puberty. Parents may find themselves ward chaining) which can be used to build “caught off guard” when their daughter puberty and guide their daughters to cope time of mixed emotions for many teens. upon and improve an individual’s inde- experiences her first menstrual cycle or with some of the challenges that they may Individuals with ASD may experience pendent living skills. (Cooper et al 2007). when they find out their daughter is being encounter during this time. sensitivities to sound, touch, taste, light Break down steps into small components teased in the locker room because she is Understanding your daughter’s indi- intensities, and some fluctuate between hy- and practice the steps by modeling the ap- not yet wearing a bra (Nichols, Moravcik vidual abilities may help you to set up a po-sensitive and hyper-sensitive (Mandy propriate actions, role play, review and pro- and Tetenbaum 2009). Adolescence and plan that will ease the transition to puberty. et al 2011). For example, the experience vide behavior specific feedback. Take the transitioning to puberty can be a stressful Consider your daughter’s overall intellec- of having to wear a bra for the first time time to teach this new skill, practice often time for many parents and especially for tual ability, how she copes with change, may be met with stress and/or sensory dis- and provide positive reinforcement (Miles parents of girls with ASD (Zamora et al her abilities in communicating her feel- comfort for some females with ASD. To et al 2009). These tasks may be unpleasant 2014). Professionals who work with fam- ings, her organizational skills, and any sen- help your daughter plan for this transition to your daughter and it is important ilies and individual females can help them sory challenges. The physical changes that take into consideration if she tends to have become better prepared for the transition to occur in females during puberty may be a sensory challenges. If you know she has a see Adolescence on

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The Self from page 4 tive, individualized, evidence-based sup- any mental health condition to consciously Corcoran, R. & Frith, C.D. (2003). Auto- port across the lifespan in so many areas. prioritize the development of a deep, rich biographical memory and theory of mind: improvement in self-reflection needs to Staying safe in the physical and cyber self-representation that incorporates the in- Evidence of a relationship in schizophre- precede efforts to support or teach “min- communities, at school, and in the work- terpersonal universe that includes boys and nia. Psych Med, 33, 897-905. dreading” or theory of mind in the treat- place is of pressing, primary importance. men, but also stands on its own. ment of narcissistic personality disorder The tasks of girls with ASD are to estab- Second, sex difference research has David, N. et al. (2008). Dissociation between (DiMaggio et al., 2008). Alexithymia is a lish a healthy lifestyle, navigate social found that, neurotypical females are gen- key processes of social cognition in autism: condition in which a person has difficulty and intellectual demand at school and in erally more competent than neurotypical Impaired mentalizing but intact sense of recognizing his own thoughts and emo- the workplace, find a career path, and at- males at empathy, theory of mind, and oth- agency. J Autism Dev Dis 38, 593-605. tions. A functional magnetic resonance im- tain a level of independence. Girls need er aspects of social competence. Societal aging (fMRI) study compared neurotypical support in establishing gender and sexual expectations and the media are certainly DiMaggio, G. et al. (2008). Know yourself individuals with above-average self-reflec- identity and negotiating passages through in line with these scientific findings. That and you shall know the other..to a certain ex- tive abilities to individuals with alexithy- adolescence, young adulthood, adulthood, society expects greater social competence tent: Multiple paths of influence of self-re- mia (non-ASD) and found that those with adult relationships, and, for many, through in females than males is something of an flection on mindreading ScienceDirect: superior self-reflective ability were more mother- and grandmotherhood. All along irony for girls and women with ASD. This Consciousness and Cognition, 778-789. capable of understanding others’ emo- the way, parents, educators, clinicians, and does not imply that we need to develop so- tions and less prone to painful emotions researchers aim to support the maintenance cial competence in girls in order to meet Fonagy, P. Gergely, G., Jurist E., & Target than those with alexithymia (Moriguchi of relationships with family members and an unfair or unrealistic standard. Rather, M. (2002). Affect regulation, mentaliza- et al., 2006). In a study of schizophrenia, peers, manage mood, behavior, and anxi- we need to support girls and women in tion, and the development of the self. New Corcoran and Frith (2003, 2005) found ety regulation, and cope with limitations in developing their social competence to its York: Other Press. strong correlations between autobiograph- motor competence, attention, and execu- fullest capacity for its own satisfying sake ical memory retrieval (a component of tive functions. and to be safe and comfortable in our so- James, W. (1890). The Principles of Psy- self-awareness) capacity and performance Clinical practice with girls and wom- cial world. chology. Boston: H Holt & Co. on ToM tasks. Corcoran (2001) proposed en has addressed the need to support the that people rely on autobiographical mem- development of identity in both group In Conclusion Lane, R.D. & Schwartz, G.E. (1987). Levels ory to infer another’s mental state. That and individual treatment. For example, of emotional awareness: A cognitive-devel- is, retrieved memories of one’s own life in Girls Growing Up on the Autism Spec- ASD research has historically focused opmental theory and its application to psy- form the basis for making inferences about trum, Dr. Shana Nichols describes activ- on the interpersonal world of social com- chopathology. Amer J Psychia, 144, 133-143. another person’s mental state. The notion ities such as developing the “All about petence. Concepts of self-representation, that self- and other-awareness is also sup- me” book, “What would you rather do?”, self-awareness, and self-reflection have Lind, S.E. (2010). Memory and the self in ported by neuroimaging and behavioral journal exercises, and creative activities been studied in typically developing peo- autism: A review and theoretical frame- research. Neuroimaging research suggests to encourage girls to understand them- ple and individuals with other types of work. Sage Publications and the National that mentalizing about self and about oth- selves. Can we develop broader and deep- mental health challenges but have received Autistic Society 14(5), 430-456. ers activates shared, overlapping although er methods to increase self-awareness and little attention in the field of ASD. While different brain regions. The degree or na- the development of a realistic self-repre- girls with ASD have many urgent needs for McDonald, N.M. & Messinger, D.S. ture of the difference or overlap in brain sentation? Would this lead to measurable loving, thoughtful care and attention across (2011). The development of empathy: region activation depends on the degree to improvements in social competence emo- the life span, it is important to delve into How, When, and Why in A. Acerbi, J.A. which the individual perceives the other as tional regulation, and ultimately, quality concepts of self-representation, self-aware- Lombo, and J.J. Sanguineti (Eds.), Free similar or different from the self (Uddin, and richness of life? We know that self-es- ness, and self-reflection in ASD in order will, emotion, and moral actions: Philos- 2011). All of these lines of investigation teem in ASD is important, and we work on to understand similarities and differences ophy and neuroscience in dialogue. Rome: support a rationale for investigating the “building self-esteem,” but can authentic with typical development and other men- Pontificia Universita della Santa Croce. relationship between self-awareness and self-esteem be established without foun- tal health conditions, and develop effective social competence. dation skills in self-awareness and self-un- treatment approaches. Moriguchi, Y. et al. (2006). Impaired derstanding? self-awareness and Theory of Mind: An Mood and Behavior Regulation Elizabeth V. Roberts, PsyD is Clinical fMRI study of mentalizing in alexithymia. What Is the Meaning of Self Assistant Professor of Child and Adoles- Neuroimage, 32, 1472-1482. The more we are able to distinguish our for Girls and Women? cent Psychiatry at The Child Study Center perspective from other’s, the more we are at NYU Langone Medical Center’s Depart- Nichols, S. (2009). Girls Growing Up on the likely to manage emotions and meet our Two, somewhat contradictory reasons ment of Child and Adolescent Psychiatry. Autism Spectrum London: Jessica Kingsley. own needs (Lane & Scwhartz 1987). The why this is particularly important for girls For more information, please visit http:// relationship between self-representation and women come to mind. Historically, www.nyulangone.org/csc. Uddin, L.Q. (2011). The self in autism: An and self-awareness has not been studied girls and women have derived key com- emerging view from neuroimaging Neuro- in ASD. Emotional and behavior dysreg- ponents of their identity from their rela- References case 17(3), 201-208. ulation are sometimes crippling challeng- tionships with men - fathers, husbands, es for talented, otherwise competent girls brothers, and male workplace supervisors. Corcoran R. (2001). Theory of mind in Zalla,T. & Sperduti, M. (2015). The sense with ASD that impede their academic and While for some women, in some societ- schizophrenia. In D. Penn & P. Corrigan of agency in autism spectrum disorders: A vocational progress. ies, in some respects, this has gradually (Eds.), Social cognition in schizophrenia dissociation between prospective and ret- Implications for Research and Treatment changed, it remains a reality. It is partic- (pp. 149-174). Washington, DC: American rospective mechanisms? Frontiers in Psy- Girls and women with ASD need sensi- ularly important for girls with and without Psychological Association. chology 6, Article 1278:1-7.

Advice from page 10 many areas of my life that I did not even their support or the ladder. I needed to do in too fast to give them the answer to their ask for but needed. Although, I think their it on my own. mistake. Coach them to come to you for the passion for cows, they become scholars in constant support inhibited me as an ado- answer. Also don’t say, “You always make their area of interest. Not everyone with lescent because I needed to fall and make Q. In what ways would you like to be sup- mistakes.” Rome wasn’t built in a day and ASD reaches that level, but their unique mistakes. ported by your parents moving forward? habits are not changed with correcting one special abilities make them awe inspiring That is why they found CIP, so I can mistake. Taking risks can cause anxiety but and they can be used for a better purpose. fail as an adult, but the staff now provide A. Ideally, I would like to be treated as an it has to be done to grow up. Like Dr. McManmon says, “We are made me support with a non-emotional way that equal. I want them to take off the ASD label for good purpose; we just need to have ac- lets me learn from my struggles. I some- and treat me as an adult. As their daughter, About the Author cess to that purpose.” times fall into a pit and the staff shouts I also have to realize that they are my par- advice from the top of the pit, sometimes ents. I guess that is their job to protect me Dr. Michele Ramsay has over 20 years Support for Parents with I don’t listen and fall lower. Sometimes and I really do appreciate it all they do for of experience working with students with Daughters on the Spectrum I listen and as I gradually climb up they me. So I’ll live with the protection things, learning differences at various age levels shout down but as I get to the top they but I need them to trust in me that I will get and supports (teacher, director of special Q. What level of support do you feel you stop talking, although they are still stand- things done without prompts. services, and program director). She is receive from your parents? ing there as my safety net. It’s scary as I the Director of the CIP Brevard Center climb higher because I fear falling down, Q. What advice would you give to parents in Melbourne, Florida and presents at A. Now, definitely more than the typical but on each level I climb I gain more con- that may be having difficulty support- conferences around the nation on Advo- age 24-year-old women. They are heli- fidence in myself. Growing up, my par- ing their daughter as she transitions into cacy, College Readiness, and Executive copter parents. I think it was important for ents didn’t shout advice, they gave me a adulthood? Functioning Skills. For more information me at times, but not so much today. They ladder, and I couldn’t learn anything from about the CIP Brevard Center, please visit have also supported me unconditionally in that to apply in daily situations without A. Let them make mistakes and don’t rush http://www.cipworldwide.org/. AUTISM SPECTRUM NEWS ~ FALL 2016 www.mhnews-autism.org PAGE 21

The Unique Needs of Women and Girls with Autism

By Sarah Hendrickx more nuanced, non-verbal personality sponses means that their autism can be Consultant and Trainer based friendship league which our autis- incredibly invisible, only leaking out in tic girls struggle to keep pace with, and times of stress or when the script/template often don’t want to. Autistic people are cannot keep up with the current situation. y own experience perhaps known to have topics of fascination and This means that any faux pas look delib- gives an insight into the re- interest and this certainly equally applies erate, out of context with the usual per- peatedly similar tales I hear to females. However, an expectation of sona – and often it is just that, a series of from other autistic women the trains, dinosaurs and space type object personas for different settings – and the Mand parents of girls. I came to the field of based interests of the stereotypical profile resulting negative feedback from recipi- autism via employment in education and may not always quite fit for females. In ents is crushing. then as Training Manager of a specialist my experience, autistic females often The difficulties in reading people can Asperger mentoring project for young peo- have an interest in people, but almost also lead to a vulnerability and naivety in ple. By this point, there had already been from an outsider perspective. They study some females which can be dangerous. personal family realization – it became people as an object, an alien species, in a Wanting to belong can make a person obvious through my professional learning bid for understanding and perhaps accep- grateful for any attention from others and that my partner, Keith, is autistic and oth- tance. I have met many women who have unable to determine whether it is genuine er members of my family were one by one studied psychology, anthropology, reli- and safe. I know from my own experi- being diagnosed as well. I embarked on an gion, genetics and many other wide and ence that despite having an IQ of 150+, extensive self-instigated learning mission varied loose ‘people’ topics to try and see I am unable to tell if someone is lying or for both professional and person insight, Sarah Hendrickx where they fit in the world in its broad- has an alternative motive, which has lead eventually writing a number of books on est sense. Fascinations with celebrities, me into situations of harm. Being clev- autism and studying for a Master’s degree tion can be put down to a self-fulfilling serial killers and historical figures fea- er doesn’t protect you if you are socially in Autism. historical bias towards males receiving ture frequently along with the devouring gullible, as I am. I made myself an expert in the people autism diagnoses, but we don’t have time of self-help books and endless efforts to It’s not all doom and gloom, of course. I worked and lived with but despite this, for that here. It should be stated that the improve, change and belong have led to The greatest surprise in my journey has I failed to see it in myself. The reason I females that have largely been missed are the individual themselves being their own been the discovery of my ‘tribe’, which missed it was because my learning hadn’t those without accompanying intellectual special interest. I have met nurses, psy- I didn’t even know I needed. Connecting taught me about autistic people who disabilities – the Asperger profile – and chologists, counsellors – all professions with other autistic women has enabled looked like me: autistic people who had that’s predominantly who this article will that would not be associated with an au- me to feel a sense of belonging that I big, chaotic lives rather than small, isolat- focus on. tistic profile, but all roles than require the didn’t know existed. Sometimes these are ed ones. Autistic people who knew they So, who are these females and what do ‘working out’ of human and social rules. strangers on social media, but it doesn’t didn’t fit but tried their hardest to do so, they look like, if they don’t all fit the nerd/ When talking to these women it is clear to matter: we ‘get’ each other. When we often at great cost. Autistic people who loner stereotype? Well, from the extreme- see that the social skills that they feel that share a tale of woe, stupidity or joy, there were impulsive, dangerous and who love ly small and sparse gender focused autism they require to be accepted in the world is no frown or confusion, no roll of the (self-initiated) change. I knew that I was research that has taken place along with an are ones that they have had to learn from eyes of judgement, only solidarity: empa- odd and that every relationship I’d had increasingly vocal female autistic popula- whatever instruction manual they could thy. Yes, empathy: empathy for our own was with someone who probably fitted the tion, especially through social media and find. kind, for shared experiences and a shared autistic mold. I knew I was highly logical blogging, we are starting to see some pat- Despite, her best efforts at learning world view. It’s just everyone else that we and struggled to interact in non-structured terns and shared experiences that at first mechanically what non-autistics know don’t understand. social situations. I knew I had “phases,” glance appear to entirely contradict the intuitively, she is likely to still to strug- We can learn lessons from those undi- 35 failed jobs and self-harmed. I knew all traditional triad of autistic cognitive pro- gle with reading people and interpreting agnosed until later life that can be passed of that, but it didn’t look like the autism cesses, but on closer examination, actually hidden messages and agendas. This leads on to our girls now finding their way that I had studied. Keith was the epitome reveal them, in my opinion, to be reason- her to be direct and straightforward in her with diagnosis, support and knowledge. of the autism I had studied and I knew that ably accurate but simply presented in a manner and communication, offering less We need to encourage their individuality, I understood him, and he me, but we were different way. social smiling and social padding than is give the tools to navigate the world with- so different. Weren’t we? The autism that The females often love to talk from expected for females. This can lead her out losing who they are along the way, I had studied had only given me a partial a young age and may have precocious to being judged more harshly because which so many have done in the past. picture, because that was all we knew vocabularies, which makes them appear of her gender. A blundering male can Autistic girls and women are glorious, about it at the time. In the past few years, very social and hence no tick in the au- sometimes be forgiven for awkwardness unique creatures, defying social and gen- things have changed and changed fast, tism box. What can be apparent on closer or limited understanding of others: ‘it’s der norms, and if supported well, should and this has meant that we now know that listening is that the conversation is not just how men are’ is a term of our times. be able to embrace their eccentric selves autism can look a whole load of different reciprocal, or is fairly surface level with But a woman behaving in the same man- as a first rate autistic person rather than ways – for females, males and others. It is little depth of understanding or nuance ner can be considered ‘cold’, ‘nasty’, ‘a feeling like a second class version of neu- important to note that what is often called and hidden agenda. It is considered that bitch’, and thus the female autistic faces rotypical. the “female autistic profile” doesn’t just in early years autistic girls perform bet- the additional challenge of not only con- apply to women – it can apply to anyone ter than their male counterparts but that travening typical social norms, but gender For conference bookings and other en- – it’s just that it appears to partly explain things change once teenage years are norms too. Added to this is the fact that quiries, please see www.asperger-train- why so many females got missed along reached. It’s not that the girls regress, it’s for many autistic females, their efforts to ing,com or email: info@asperger-training. the way. The other part of the explana- that their female peers shift gear into a mask, hide and mimic learned social re- com. Please note that Sarah lives in the UK.

Handshake from page 6 day, Behavioral Health News and Autism Please look for our Annual Fall Appeal News and Autism Spectrum News this holi- Spectrum News reach over 160,000 hard- letter that will be arriving in the coming day season will be a meaningful and heart- been) with mental illness. copy readers across New York State and weeks - take a moment and consider us felt “Handshake of Hope” to someone out My son David, who was inspired by my beyond. Our plans to enhance our online in your annual giving plans. You can also there who is lost and alone right now. We recovery and vision to help others, joined delivery and presence has the potential to make a donation directly on our website need to reach more people like that, shake me as my Associate Director in 2008 to expand our educational mission to numbers at: www.mhnews.org/donate.htm. their hand, and give them the encourage- publish Autism Spectrum News - now a even beyond our greatest expectations. Please help us to continue providing hope ment they need to move forward and im- leading publication helping thousands of This Holiday Season, we need your to people with mental illness, substance use, prove their lives. As simple as a Handshake families and individuals cope with the chal- support more than ever before. We are a and autism spectrum disorders. Your tax-de- may seem, it has been proven to save a life lenges of autism spectrum disorders. To- small organization with a vital mission. ductible contribution to Behavioral Health and start something wonderful. PAGE 22 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2016

This Boy from page 17 one more minute she was afraid she might how hard he worked. She wanted to tell him she was crying go crazy. It felt too much like a big, ugly, But at some point, autism made his cor- for all the things he wouldn’t have; a tux- See, when it comes to autism, there are snakey lie. ners sharper and more rigid, and it became edo for the prom and hot lunch in a noisy no do-overs. There are no second chanc- Sitting in the cool, dark garage, it was as harder and harder to wedge him into the cafeteria and the chance to stand at the bus es. This mom has just one opportunity to if everything around them—the dad’s old round, smooth games at recess. stop with his three brothers and one sister be his mom and she has to make the very work boots and the broom on the hook and She wanted to tell him how many nights on the first day of school. best right decision for him, even when the the soccer ball in the corner—took a col- she and his dad spent talking in the dark- But she knows it is time—it is time to best right decision is so terribly hard that it lective breath together and waited. ness—each playing something called dev- make his world small and cozy and warm. makes her heart fold over on top of itself. This boy Jack, well, he simply dissolved. il’s advocate and tossing around options It’s time for him to relax in his cocoon, and “I will go. Like Joey.” There is no other way to describe it. and trying to figure out a way to keep their just be the most perfect-est caterpillar ever. She told him last Wednesday about his She held him across the console of their precious son marching in his duckling line. In his new school, he can blossom into a new school. They were driving home after red minivan and even though she could “What if we paid for....?” butterfly whenever he’s ready. the last day of his summer program, and feel the hate and rage and shame radiate “The school said we can’t do that.” It’s August now. In just a few short weeks, he was talking on and on about his teacher off of his body like the sun, he let her hold “How about if we try one more year?” you will make the climb up the hill to the for seventh grade and whether or not they him. He doesn’t always let her hold him. “I don’t think I can take one more year, middle school that was built in 2007. As you should look for blue pencils. She pulled “Just let me be normal please let me go I and neither can he.” sit in your new classrooms and listen to your the car into the garage and turned off the will be good please please please I have to “He’s going to be devastated.” new teachers, I only hope one thing. engine and turned to face him in the seat go I need a new start I will do it right I will “I know.” Don’t forget him. next to her. be good like Joey I have to go like Joey.” She held him while he cried big, wet Please, don’t forget this boy who tried so “Jack, buddy. Listen to me. You aren’t While he sobbed and screamed, she tears. She stroked his soft hair and for a hard and who will never give up and who going back to public school.” thought about all the things she wanted second he laid his head in her lap and she wants to be just like you. They didn’t plan to tell him this way, him to know. rested her head on top of his, and then all the mom and the dad. They planned to sit She wanted him to know this is not be- at once he lifted up and slammed into her What Color Is Monday?” is available on him down at the long kitchen table and cause he was bad or because he did some- chin and she bit her tongue very hard. Tears Amazon.com and BarnesandNoble.com. have a discussion so they could explain thing wrong. She knows how hard every- sprang into her eyes. You can also follow Carrie on her weekly the reasons and outline the plan. But if she one around him worked–his teachers and “Why! For you. Are CRYING.” blog: www.CarrieCariello.com and Face- had to hear him talk about seventh grade his aide and his case manager. She knows Oh, my Jack-a-boo, she thought in her head. book.com/WhatColorIsMonday.

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Differences from page 18 The Other Girls risks. In adolescence, the social vulnerabil- I cannot prove this in anything approach- ity of ASD girls could make them prey to ing a scientific manner, the theory makes College Director Catherine Lord ob- It is also helpful to consider the neurotyp- sexual abuse. As in all things, prudence is sense in my mind. Like girls, I was always serves that “[o]n average, girls [on the ical girls surrounding girls on the spectrum. of the essence. very sensitive and had strong emotions – a spectrum] are more chatty, less disruptive They, too, possess the female “facial-fo- But perhaps if parents and teachers are fact that may have roots in the sensitivity and less likely to be entranced by trains cus,” which can mean one of two things. able to come together and identify trust- of the ears. or moving vehicles than boys are” (as cit- As Mandavilli (2015) suggests, neuro- worthy boys - and girls, for that matter - So as much as people may associate au- ed in Mandavilli, 2015, Girl power sec- typical girls can come to see themselves as with whom ASD girls attend school, they tism with males, we may recognize that the tion, para. 7). “protectors” of their ASD peers (Growing could get the proverbial ball rolling on pos- overall “picture” is more complex than we As ASD girls progress through devel- up section, para. 6). But in adolescence, the itive change. might suppose. opmental stages in which socialization be- “facial-focus” can also translate into a fix- comes increasingly important, they are like- ation on self-image, which in turn becomes Conclusion: Personal Reflections Daniel Crofts is a 31-year-old man with ly to require more specialized attention and an obsession with cliques and the “mean As a Male on the Spectrum Asperger Syndrome. He has an MA in En- services. Mandavilli (2015) puts it this way: girl” attitude. Here you have a potentially glish/Literature from the State Universi- “In early childhood, boys and girls with volatile arena in which the social hurdles Autism is a broad condition that involves ty of New York College at Brockport and autism are about the same. If anything, ASD girls face could get them into trouble. social and conceptual difficulties resulting experience in the fields of freelance jour- girls appear to be more social — whether from uneven sensory experience, which in nalism, substance abuse prevention, online because they actually are or are just per- A Possible Aid turn involves a combination of hypertro- higher education, and service to people ceived to be. As they edge closer to adoles- phied and atrophied senses. Which senses with developmental disabilities. He runs a cence, however, girls with autism lose this Without trying to discourage friendships are hyper-alert and which are under-alert blog called Forming Horizons (formingho- early social advantage, becoming less and with female peers, I would like to suggest varies from person to person. rizons.com), which is dedicated to the mis- less likely to have friends, and more like- that appropriate friendships with boys of the But as much as this and other variations sion of dialogue and information among ly to be isolated (Social networks section, same age group may be helpful to girls on the within the spectrum may be recognized, and for the various parties impacted by para. 2).” spectrum. According to Mandavilli (2015): autism has traditionally been viewed as a autism spectrum disorders. No one on the autism spectrum, whether “Imaging studies have reported that the male disorder. male or female, wants to be alone. People social brain is underactive in people with Looking back on my own experience References with ASDs are as desirous of human con- autism, but [Yale professor Kevin] Pel- with Asperger Syndrome, I must ac- nection as anyone else, but lack the natural phrey’s lab has found that if typical girls knowledge the irony in the fact that my Mandavilli, A. (2015, October 19). The capacity to navigate the complexities of the have the most active social brains and boys condition has, in a certain sense, led to lost girls. Spectrum. Retrieved from https:// social world. with autism the least active, typical boys greater sympathy with the female sex spectrumnews.org/features/deep-dive/the- But whereas boys are more apt to accept would tie with girls who have autism some- than with the male sex (especially during lost-girls/ this as a given and forgo the effort, girls on where in the middle. “That kind of blew us my school days). the spectrum appear more likely to behave away,” he says. (Different worlds section, I think this may stem from the fact that Sax, L., M.D., Ph.D. (2005). Why Gender as “social butterflies” in spite of their defi- para. 6, italics added).” one of my hypertrophied senses is the sense Matters: What Parents and Teachers Need cits, which can open them up to embarrass- To be sure, gravitating towards too large of hearing – which, as mentioned, tends to to Know About the Emerging Science of ment and/or abuse. a number of male friends carries its own be stronger in females than in males. While Sex Differences. NY: Doubleday. AUTISM SPECTRUM NEWS ~ FALL 2016 www.mhnews-autism.org PAGE 23

A Clarification From the ASN Summer 2016 Issue

By Lawrence Scahill, MSN, PhD sive behavior than Parent Education. The ment assignment. At Week 24, the treat- Resources Professor of Pediatrics, PT program provided parents with spe- ment-blind clinicians rated 70% of the Emory School of Medicine cific strategies on how to manage serious children in the parent training group with Bearss, K., Johnson, C., Smith, T., Lecav- Director of Clinical Trials, behavioral problems such as tantrums, a positive response, compared to 40% for alier, L., Swiezy, N., Aman, M., McAdam, Marcus Autism Center aggression, self-injury and noncompli- parent education.” D.B., Butter, E., Stillitano, C., Minshawi, ance in children with autism spectrum Note: The 48% decline in PT vs 32% de- N., Sukhodolsky, D., Mruzek, D.W., Turn- disorder. Parent Education offered useful cline in Parent Education reflects the mean er, K., Neal, T., Hallett, V., Mulick, J.A., e were delighted to see the information about ASD – but did not pro- change from baseline on the measure - not Green, B., Handen, B.,Deng, Y., Dziura, J., mention of our study on par- vide guidance on how to manage serious the percentage of children rated as “im- Scahill, L. (2015). Effect of parent train- ent training in children with behavioral problems. proved” by the parent. The next sentence ing versus parent education on behavioral ASD and disruptive behav- The front page article incorrectly stat- (beginning with “Additionally…”) missed problems in children with autism spec- Wior in the article “Employers Supporting ed that “48% of parents who underwent the very important point that the rater who trum disorder: a randomized clinical trial. Parents Through ABA-Based Technolo- 24 weeks of behavioral training reported made the judgement about improvement JAMA. 313(15):1524-1533. doi:10.1001/ gy” by Angela Nelson, MS, BCBA, Re- improvement in their child’s behavior as was blind to treatment assignment. Taken jama.2015.3150. think, in the summer 2016 issue of Au- compared to 32% of parents who received together, these findings indicate that both tism Spectrum News. The multisite study 24 weeks of just basic education on ASD.” treatments resulted in improvement - but Scahill, L., Bearss, K., Lecavalier, L., included 180 children with ASD (ages 3 The sentence that follows (starting with PT was superior. Smith, T., Swiezy, N., Aman, M.G., Suk- to 7 years) who were randomly assigned “Additionally...” is not incorrect - but is Other facts: this was the largest ran- hodolsky, D.G., McCracken, C., Minsha- to a structured Parent Training (PT) pro- potentially misleading. domized trial of a behavioral intervention wi, N., Turner, K., Levato, L., Saulnier, gram or Parent Education for 24 weeks. This would be more accurate: “After in children with ASD. The Parent Edu- C., Dziura, J., Johnson, C. (2016). Effect The paper was published in the April 21, 24 weeks of treatment, children in the cation program was equal in the num- of Parent Training on Adaptive Behavior 2015 issue of the Journal of the Ameri- parent training group showed a 48% im- ber of visits and duration of treatment. in Children with Autism Spectrum Disor- can Medical Association (a major feat for provement on parent ratings of disruptive We also showed that children in the PT der and Disruptive Behavior: Results of a a behavioral intervention in children with behavior compared to a 32% decline for group showed greater gains in everyday randomized trial. Journal of the American ASD). We showed that PT was more ef- parent education. Overall progress was living skills. The study was funded by the Academy of Child and Adolescent Psychi- fective in reducing disruptive and aggres- rated by a clinician who was blind to treat- NIMH. atry, 55(7):602–609.

How Supported Decision-Making Can Help Family Caregivers

By Lauren Agoratus, MA are thought of as incapable of making their ed-decision-making/.) of subjective well-being.”2 In addition, as Parent own decisions. With supports, individuals Schools can also play a major role in a person with a disability becomes more Family Voices NJ with disabilities can make their own life building the capacity of students with independent there is less family caregiver decisions. Even when their disabilities disabilities to be able to make decisions burden, but most importantly, better life- significantly impact their independent de- through a focus on independence and long results for the individual. ndividuals with autism should have cision-making capacity, they can still have self-advocacy starting from a very young a choice in what happens to them meaningful input into the choices that are age. The DC Public Schools have excel- What Do Individuals throughout their lives. Too often, made about their lives. They should have lent resources including an overview of with Disabilities Want? parents of children and adults with a say about where they live, go to school, goals that build toward independence and Iautism, intellectual, or developmental dis- work, etc. This is the “next generation” of decision-making capacity at every grade This generation of self-advocates pre- abilities are advised – and often when their self-determination. beginning with preschool (see http://sup- fer as much control and decision-making child is very young, long before it is possi- porteddecisionmaking.org/events/support- power over their lives as possible. There ble to predict their future decision-making How Does it Work? ed-decision-making-and-youth-transition) is a movement towards “person-centered and independent living capacity - that their and a Supported Decision-Making Consent planning” in both the educational and now only option is guardianship. However, Supported Decision-Making occurs form (see http://dcps.dc.gov/page/support- medical arenas. In healthcare, it is known there’s a new way to help people with au- when an individual with a disability has ed-decision-making). as “shared decision-making” and “shared tism and other developmental disabilities a “supporter” or support team to help responsibility.” But shared decision mak- to make choices about their lives, and it is them decide on important issues. Some Why is Supported Decision ing should apply not only to health de- called Supported Decision-Making. states are starting to have Supported De- Making a Good Choice? cisions but to all areas of a person’s life. cision-Making options with actual sample Person-centered planning builds on the What is Supported Decision-Making? forms. This can be done informally and the Research has shown that self-determi- person’s strengths and preferences. Chil- supporter can be a family member, friend, nation effects health outcomes, inclusion dren with autism and other developmen- The National Center Resource Cen- etc. The Autistic Self-Advocacy Network in the community, overall independence, tal disabilities need to learn from an early ter for Supported Decision-Making (see has a toolkit “The Right to Make Choices” and recognition and resistance to abuse.1 age how to speak up for themselves and http://supporteddecisionmaking.org) has which discusses current laws and options Conversely, research has also indicated self-advocate. These children should have the motto “Everyone has the right to make including samples of forms (see http:// that guardianship has a “significant nega- as much input as possible based on their choices.” Too often, people with autism, autisticadvocacy.org/2016/02/the-right-to- tive impact on physical and mental health, intellectual, or developmental disabilities make-choices-new-resource-on-support- longevity, ability to function, and reports see Caregivers on page 24

Unicorn from page 14 sensory issues to be able to find and wear and involved not as a mythical beast but as become an active advocate for individuals a bra should they desire. We need systems an adult woman living a happy successful on the autism spectrum. She is currently the We have only just begun to discuss the in place to support us as professionals. We life on the autism spectrum. To know that I Director of Development of GRASP (Global unique needs and supports of women on need education for the women on the spec- only have to traverse a mountain if I want and Regional Asperger Syndrome Partner- the spectrum. We become wives, moth- trum that choose to be wives and mothers. to, not because I have to. I want to stand ship) as well as sitting Chair of the GRASP ers, scholars, and so much more but still We need the researchers and clinicians to side by side with my fellow spectrumites, Board of Directors. Ms. Lory has published the supports are not our supports. Most include us in the work they do because we knowing that we share a neurology, that multiple articles, speaks publicly about be- recently, the topic of the lack of research want to be involved as much as they will our needs are being met equally and easily, ing on the autism spectrum with the goal studying adult females on the autism spec- allow us. We want the inclusion, the di- that we are included in our futures, and that of spreading awareness, understanding, trum has come to the forefront of conver- versity, the testing, and the supports; to be our voices are being heard. and encouraging self-advocacy. Ms. Lory sation. An important topic, as without equal to that of our brothers on the spec- I want to hang up my horn and just is developing and teaching improvisational quality research the supports will not get trum as they are our community as much breathe knowing that my time as unicorn workshops in order to assist adults with the funded. All in all, we do A LOT of talking. as we are theirs. was not wasted. practice of independent living skills. For But what we really need and what we re- This unicorn of unicorns no longer wants more information about GRASP, please ally want is some doing. We need supports to be a unicorn at all. I just want to be me. Becca Lory, CAS, was diagnosed with As- visit www.grasp.org. To contact Ms. Lory, to help girls going through puberty with To be supported, respected, challenged, perger Syndrome as an adult and has since email [email protected]. PAGE 24 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2016 AUTISM SPECTRUM NEWS Your Trusted Source of Science-Based Autism Education, Information, Advocacy, and Community Resources

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Caregivers from page 23 In summary, although this is a personal Parent Advocacy Network: http://www. ly Voices is housed at the Statewide Parent decision for every individual with a signif- spanadvocacy.org/sites/g/files/g524681/f/ Advocacy Network (SPAN), www.spanad- abilities. Supported Decision-Making is icant disability and their family, there are files/Alternatives%20to%20Guardian- vocacy.org. SPAN is also the home of the recognized as “autonomy with support.” new options for parents of children and ship%20Fact%20Sheet.pdf state’s Family-to-Family Health Information adults with autism, intellectual, or devel- Center. Lauren can be reached at (800) 654- Options for Family Caregivers opmental disabilities. Even if an individu- REACH for Transition: Supported SPAN or by email at familyvoices@spannj. Besides Guardianship al will not live completely on their own, Decision-Making & Alternatives to org. Families can find free help in their state Supported Decision-Making allows them Guardianship - Statewide Parent Advo- at www.familyvoices.org/states.php. There are many ways that parents can as- choices throughout their lives. It is essen- cacy Network: http://www.spanadvoca- sist their family member with a disability to tial to remember, regardless of disability, cy.org/content/supported-decision-mak- Footnotes make important life choices. These include: “Everyone has the right to make choices.” ing-and-alternatives-guardianship 1. Ishita Khemka, Linda Hickson, Gil- 1. Supported Decision-Making Agree- Additional Resources Supported Decision-Making Brainstorm- lian Reynolds Evaluation of a deci- ments - These can be drawn up by ing Guide: http://supporteddecisionmak- sion-making curriculum designed families, though as mentioned above Administration for Community Living Sup- ing.org/node/388 to empower women with mental re- some states have templates. ported Decision-making Blog: http://www.acl. tardation to resist abuse Am J Ment gov/NewsRoom/blog/2015/2015_01_28.aspx Supported Decision-Making: What, Why Retard. 2005 May;110(3):193-204. 2. Health Care Proxy - This form ad- and How: http://supporteddecisionmaking. dresses medical decisions. Getting the Community Life You Want: org/node/399 Michale Wehmeyer, Michelle Schwartz Excep- A Guide to Home and Community Based tional Children 1998, Vol. 63, No. 2, pp. 245-255. 3. Advanced Directives - Decisions on Services Advocacy – Boggs Center: http:// Winning the Case for Supported Deci- end-of-life care can be made using this rwjms.umdnj.edu/departments_institutes/ sion-Making: http://supporteddecisionmak- Wehmeyer, M. L., Kelchner, K., & Rich- document. boggscenter/products/GettingtheCommu- ing.org/events/representing-clients-guard- ards, S. (1996). Essential characteristics nityLifeYouWant.html ianship-actions-winning-case-sup- of self-determined behaviors of adults 4. Power of Attorney - This gives an- ported-decision-making with mental retardation and develop- other individual control over legal Person-Centered Planning Tool - NJ De- mental disabilities. American Journal on decisions. Please note that there is partment of Human Services: http://www. Lauren Agoratus is the parent of a child Mental Retardation, 100, 632-642. also an option for “durable power of nj.gov/humanservices/ddd/documents/Docu- with autism/kidney disease. She is the NJ attorney” for temporary situations ments%20for%20Web/PCPT%203-13-13.pdf Coordinator of Family Voices, the national 2. Jennifer L. Wright, Guardianship for Your such as mental illness that can be re- network that works to keep families at the Own Good: Improving the Well-Being of voked once the person regains deci- Supported Decision-Making and Alterna- center of children’s health care for children Respondents and Wards in the USA, 33 sion-making capacity. tives to Guardianship factsheet – Statewide with special healthcare needs; in NJ, Fami- Int’l J.L. & Psychiatry 350 (2010) AUTISM SPECTRUM NEWS ~ FALL 2016 www.mhnews-autism.org PAGE 25

Gender Identity from page 7 Meet Anik were consistent with the few other stud- tism specialist, psychotherapist, and cou- ies in which autistic adults self-reported­ ples’ counselor in private practice in Ar- cisgender, which was reported by 50% of Meet Anik, who is White, European on their own sexuality identities and ex- lington, MA. She has met and worked with the ASD sample, the following genders American, and 22 years old. Anik entered periences (e.g., Byers et al., 2013, Gilm- hundreds of individuals, couples, and fam- were endorsed by participants with ASD: counseling at their parents’ recommenda- our et al., 2012). Autistic individuals who ilies with Asperger’s/Autism with diverse agender (having no gender; not identi- tion due to their questions about ASD and are designated female at birth but have a profiles, circumstances, and backgrounds. fying as masculine, feminine, or another gender identity. Anik prefers the pronouns gender non-conforming identity may be She also facilitates workshops and trainings gender; 17%); gender non-conforming/ they, them, and theirs. They dress in busi- relieved to know that their experience is at various universities, mental health, and non-binary/genderqueer (not identifying ness casual attire – oversized silk blouses common. It may be the case that aspects medical centers. Her book Marriage and exclusively as masculine or feminine, neatly tucked into their tailored trousers, of their neurology, while currently un- Lasting Relationships with Asperger’s Syn- and not ascribing to the traditional gender and keep their messy, curly hair in a po- identified, may account for differences in drome was published last year. She can be roles and societal expectations of the gen- nytail. They have a bachelor’s degree in their gender identity. Self-knowledge­ can reached at her website www.evmendes.com der associated with one’s sex assigned at history, but they are currently unemployed be empowering to live authentically and to or email at [email protected]. birth; 15%); demigirl (identifying partial- and looking for a job. Anik was designat- pursue meaningful relationships. Hillary Hurst Bush, PhD, recently re- ly, but not completely as a woman, girl, ed female at birth and was given a tradi- A theme that emerged from participants ceived her doctorate in Clinical Psychology or as feminine; 7%); genderfluid (moving tionally female name. Over the last two in the [Autistic] Women’s Sexuality Study at the University of Massachusetts Boston. across genders or having a fluctuating years, however, they have not identified as was the being less tuned into social com- She is now a Clinical Fellow at Massachu- gender identity; 4%); transgender (hav- female or as a woman – they are question- munication subtleties – a feature associated setts General Hospital. She can be contact- ing a gender identity that does not match ing whether they have a gender identity at with ASD – may protect someone from be- ed at [email protected]. the sex one was assigned at birth; 3%); all (“agender”). They have assumed a new ing oppressed or held back by social norms bigender (having two gender identities, name, Anik. around gender. For some individuals, these Footnotes which may be masculine, feminine, and/ Anik has a somewhat complicated psy- norms can feel very restrictive. As a result or other genders; 1%); and pangender chiatric history. Anik first received a diag- of feeling less bound by social norms, peo- 1. Please note that these definitions are (not identifying exclusively as masculine nosis of anxiety disorder and ADHD at 12 ple with ASD may feel freer to explore their adapted from those provided by Nonbi- and/or feminine and instead experiencing years old, when they first began to worry gender identity and to identify as neither fe- nary.org, the GLAAD Media Reference all genders, possibly genders that they about their parents getting a divorce, de- male nor male, but as something different Guide, and recent scientific research on cannot describe, or that society does not spite the fact that their parents remained or somewhere in between. However, given gender identity. recognize; 1%)1. married. At 15 years old, Anik was diag- the focus on women and young adults in the nosed with depression and anorexia, and [Autistic] Women’s Sexuality Study, we do References What Do People with ASD was briefly hospitalized. Recently, Anik not know whether males or older adults Say About Gender Identity? was reading online and came across a with ASD may be more, less, or equally Bush, Hillary Hurst, “Self-Reported Sex- blog about women with autism. Upon likely to endorse non-binary­ gender iden- uality among Women with and with- In the study, participants were asked: “If learning more about ASD and its symp- tities as the participants in the [Autistic] out Autism Spectrum Disorder (ASD)” you identify as being on the autism spec- toms and features, they began to wonder Women’s Sexuality Study. (2016). Graduate Doctoral Disserta- trum, how if at all has being on the spec- whether they might have ASD. Their par- Raising the awareness of families, tions. Paper 243. http://scholarworks.umb. trum influenced your sexuality and/or gen- ents thought that it would be useful for friends, and professionals about the di- edu/doctoral_dissertations/243 der identity?” Some participants discussed Anik to see a specialist to find out more verse continuum present in gender iden- their gender identity when responding to about ASD. tities of people on the autism spectrum is Byers, E. S., Nichols, S., & Voyer, S. D. this question: In counseling, Anik was found to meet important so that they can demonstrate (2013). Challenging stereotypes: Sexual diagnostic criteria for ASD. Being for- sensitivity, understanding, and accep- functioning of single adults with high func- “I’ve always kind of been the ‘weird kid’ mally diagnosed with ASD was a relief to tance. For health professionals, it is im- tioning autism spectrum disorder. Journal and have never really conformed to gen- both Anik and their parents. Finally, Anik portant not assume that anyone is cis- of Autism and Developmental Disorders. der, so I don’t think I grew up with anyone was able to understand why they struggled gender. Instead, people in these roles are DOI: 10.1007/s10803­013­1813­z that I cared about really expecting me to with social anxiety, had emotional melt- encouraged to ask their clients/patients be straight or gender­conforming. If you’re downs, was very sensitive to certain cloth- about which pronouns they prefer (e.g., Centers for Disease Control and Preven- different from the start, it doesn’t really ing textures, and had difficulty initiating “she,” “he,” “they”) and use these re- tion. (2012). Prevalence of autism spec- surprise anyone all that much when you conversations and picking up on others’ spectfully. Also, asking questions of this trum disorders – Autism and develop- keep being different...” (Genderfluid, 27, body language and other social cues. Af- nature also demonstrates comfort and mental disabilities monitoring network, Asian American) ter several sessions focused on increasing willingness to discuss gender and sexuali- 14 sites, United States, 2008. Surveillance Anik’s knowledge of ASD and awareness ty. Further, it is important not to make as- Summaries, 61(3), 1­19. “…I just accepted that I was vastly dif- of ASD traits and experiences, Anik felt sumptions about other people’s identities ferent than a lot of my peers and moved comfortable discussing their gender iden- based on the way they look or seem. For Gilmour, L., Schalomon, P. M., & Smith, on with life. I have noticed that I am a lot tity. They shared, “I have been wondering some people, their outward appearance is V. (2012). Sexuality in a community based more likely to completely discount gen- about whether I am agender. I first learned very much linked with how they identify sample of adults with autism spectrum dis- der identity as important than most of my about this concept a couple of years, when on the inside, but for others, their outward order. Research in Autism Spectrum Disor- peers, which is part of the reason I identify a friend posted something about it on Face- appearance may be different from their ders, 6, 313-­318. as genderqueer and pansexual (because as book. I feel like ‘agender’ describes who I inner identity. Further, some individuals far as I’m concerned everyone else is sort am because I do not intrinsically feel ei- have fluid gender identities that fluctu- GLAAD Media Reference Guide Trans- of genderqueer too; ­­the gender doesn’t ther male or female. I really do not identify ate over time. These changes may happen gender Issues. (2011, September 9). Re- matter to me).” (Genderqueer, 29, Europe- with either.” very quickly or very slowly, and people trieved from http://www.glaad.org/refe- an American) may choose to use different terminology rence/transgender Conclusions to reflect these changes (e.g., a person These insights are consistent with the who previously identified as heterosexu- Ingudomnukul, E., Baron-Cohen, S., experiences of many gender non-conform- Some autistic women identify as cisgen- al may now identify as asexual). Overall, Wheelwright, S., & Knickmeyer, R. ing individuals Ms. Mendes has encoun- der, or female: they are designated female people involved in the lives of individu- (2007). Elevated rates of testosterone-re- tered in her counseling work. Below is a at birth, and grow up to have a feminine als with ASD are encouraged to educate lated disorders in women with autism spec- fictitious, composite narrative, intended gender identity that is consistent with their themselves on how this population – par- trum conditions. Hormones and Behavior, to further illustrate the experiences of sex. However, this is not the case for many ticularly young women – may experience 51, 597-604. gender identity of some women with ASD. individuals with ASD – including about gender differently. This is not based on any specific individ- half of the participants in the [Autistic] Nonbinary.org. (n.d.). Retrieved from ual or client. Women’s Sexuality Study. These findings Eva Mendes, LMHC, is an Asperger/au- http://nonbinary.org/wiki/Main_Page

Give a Spit from page 13 private family foundation that was estab- Foundation. “The Autism Sisters Project York and Connecticut, with additional sites lished in 1991 by Debbie and Larry Hil- is a very promising research initiative that to be added in the US and data included with autism to take a proactive role in ad- ibrand. A key mission of the Foundation should provide significant insight into the from studies from outside of the U.S. vancing important research.” is to support scientific funding of autism causes and potential treatments for autism The Hilibrand Foundation is partner- research. by conducting a thorough investigation To participate in the Autism Sisters ing with the Autism Science Foundation “The Hilibrand Foundation is proud into the reasons behind the gender discrep- Project, interested participants should on the Autism Sisters Project, providing to be a collaborative partner of the Au- ancy of diagnoses.” contact the Seaver Autism Center by major financial support for this research tism Science Foundation,” said Debbie The Autism Sisters Project is initially phone at 212-241-0961 or by email at initiative. The Hilibrand Foundation is a Hilibrand, co-Founder of the Hilibrand seeking participants in New Jersey, New [email protected]. PAGE 26 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2016

Leaders from page 6 the Coalition of Voluntary Mental Health NY Board and was the past Board Treasurer al pharma giant’s groundbreaking Autism Agencies. Josh has a Master of Public Poli- of Adolescent and Family Comprehensive Research Department. From basic target her practice in the area of not-for-profit, cy degree from the John F. Kennedy School Services in the Bronx. identification to phase 2 proof-of-con- health care and corporate law, representing of Government at Harvard University and Yvette is instrumental in initiating the cept studies, Pfizer’s autism program pi- health care providers that provide programs a bachelor’s degree in religion and the hu- agency’s first major fundraising strategy oneered efforts to develop first in-disease and services for individuals with mental ill- manities from the University of Chicago. and public relations campaign. With full medicines for autism and closely related ness, intellectual disabilities and develop- support and leadership from the Board of neurodevelopmental disorders, with an mental disabilities. Ms. Fernbach was pre- Yvette Brissett-André, MPA Directors, she is at the forefront of the de- emphasis on rare genetic syndromes such viously an associate at the law firm Stein & velopment and implementation of these two as Fragile X, Rett, Tuberous Sclerosis and Schonfeld LLP and a staff attorney at the Yvette Brissett-André, MPA, joined ambitious achievements. Under the fearless Phelan McDermid. At the helm of the pro- Greater New York Hospital Association. Unique People Services (UPS) in 2008. leadership of Yvette, in 2017, UPS endeav- gram, Dr. Ring was centrally involved in She oversees the organization’s budget of ors to open a 69-unit housing development developing the company’s research, regu- Joshua Rubin, MPP $20.6 million and a staff of over 230 em- for low-income New Yorkers. latory and commercial strategies for this ployees. She is responsible for executive Yvette holds a Master’s degree in Public new therapeutic area. Joshua Rubin, MPP is a Principal in planning, contract management and real Administration from CUNY/Baruch and a Prior to Pfizer, Dr. Ring distinguished Health Management Associates’ (HMA) estate negotiations. Her expertise includes Bachelor’s of Science from SUNY/Platts- himself during decade-long tenure in CNS New York City office. His specialty over over 20 years of experience in the areas burgh. She is a National Urban Fellow and drug discovery and development at Wyeth his nearly two decades of service to New of finance and budgeting, program devel- was one of the first participants in their Pharmaceuticals. Scientist, lab head, team York City’s mental hygiene service sys- opment, contract negotiation, low-income America’s Leaders of Change program. leader, group leader and therapeutic area tem has been service funding conversions, housing development and proposal writ- head – at Wyeth Ring earned his way to se- strategic planning, agency mergers, inter- ing. Yvette ensures that the agency’s pro- Robert H. Ring, PhD nior leadership through the traditional ranks net-based treatment, disaster preparedness grams are well funded and operate at effec- of discovery roles. Through it Dr. Ring and response, housing and homelessness, tive levels of service. Dr. Robert Ring is a seasoned Research earned a deep, fundamental understanding day and vocational services, and crisis ser- Yvette Brissett-André brings to Unique and Development (R&D) leader, with 16 of the drug discovery and development pro- vices, including suicide hotlines. People Services a wealth of knowledge years of diverse experience in executive, cess. In addition to a strong track record of During his time with HMA he has been regarding federal and state funding regula- strategic and technical leadership roles developing and leading cross-functional deeply involved in New York State’s Care tions through her work with the New York in the pharmaceutical industry, non-prof- teams, Robert has extensive experience de- Management for All initiative—especially State Office of Mental Health, New York it sector and venture philanthropy space. veloping talent, strategic planning and man- the behavioral health and care management City Department of Homeless Services, Throughout his career, Ring has distin- aging externalized research programs and for all carve-ins, DSRIP, CCBHCs, and Val- Office for Persons with Developmental guished himself as an innovator, with a collaborations. ue Based Payments. Prior to joining HMA, Disabilities, and the New York City Depart- track record of accomplishment and collab- A neuroscientist by training, Dr. Ring Josh was a government official, ser- ment of Health and Mental Hygiene, among oration across all stages of the translation- earned his PhD in molecular neurobiology vice provider and advocate. During his many other government funding sources. al research value chain. With his unique from the City of Hope National Medical government service he was the Assistant Her quest and success in acquiring background, broad scientific expertise, and Center in his native Southern California. Commissioner for Mental Hygiene Poli- awards of new contracts for the agency has diverse management experience, Dr. Ring Today, he remains engaged academical- cy for the City of New York Department proven to be one of her hallmarks, thus es- offers a portable skillset applicable to a ly, with faculty appointments (adjunct) at of Health and Mental Hygiene. During tablishing a position of creating opportuni- range of different leadership opportunities. Mount Sinai School of Medicine (Dept. of his years of City service he also served as ties with a continuum of care for the bene- Dr. Ring most recently served as the Psychiatry), as well as Drexel University the Assistant Commissioner for Chemical fit of individuals with special needs. Under Chief Science Officer (CSO) of Autism College of Medicine (Dept. of Pharmacol- Dependency Services, and the Division of her leadership, UPS has grown from a $16 Speaks (AS), the world’s largest science and ogy & Physiology) where he serves as an Mental Hygiene’s Chief Policy Officer and million company to the present $22 million advocacy non-profit operating in the rapid- instructor in Drexel’s high-profile Drug Chief Administrative Officer. and has received several contract awards as ly expanding autism/neurodevelopmental Development Program. Josh was also the Vice President and a result of winning grant proposals. These disorder space. Dr. Ring is a member of numerous pro- Chief Operating Officer of the Mental include funding from New York City De- Among his accomplishments at AS, Dr. fessional boards and societies, and serves Health Association of New York City partment of Health and Mental Hygiene Ring spearheaded a collaborative partner- as a public member on the Interagency Au- (MHA-NYC), a leader in services, advo- under the Ryan White HIV/AIDS Program, ship with Google to establish MSSNG, an tism Coordinating Committee (IACC), an cacy and education for people with men- additional funding through Human Re- unprecedented cloud genomics database fea- appointment he received from HHS Secre- tal illness and their families. MHA-NYC sources Administration HASA Scatter Site. turing open-access, whole-genome sequence tary Burwell in 2015. and its subsidiary, Link2Health Solu- Over the years Yvette has worked with data from 10,000 multiplex families (www. After stepping down as CSO earlier this tions, Inc. operate a wide range of behav- community officials and boards in the agen- mss.ng) with autism. He also helped estab- year, Robert left AS to found the private ioral health services, including residen- cy’s program service areas throughout the lish and lead DELSIA, a venture arm of AS consultancy practice (Autós). Autós has ef- tial, rehabilitation, child and adolescent Bronx, Manhattan and Queens. She is one working to facilitate the commercialization fectively leveraged Ring’s diverse profes- and family support services as well as of the founding members of Advanced for of scientific innovations by entrepreneurs, sional experience and expertise to provide the National Suicide Prevention Lifeline, Greater New York; a member agency formed academic institutions and small companies strategic planning, technical diligence, and Veterans Crisis Line and NFL Lifeline. to mobilize the Developmental Disabilities across the autism space. expert advisory solutions to clients operat- Prior to joining MHA-NYC, Mr. Rubin programs towards managed care, currently is Before joining AS, Dr. Ring served on ing across the life sciences, including bio- was the Director of Policy and Planning a member of the executive team of Fortune the executive leadership team of Pfizer’s technology companies, non-profit founda- for YAI Network, and was on the staff of Society, sits on the Interagency Council of Neuroscience Unit, and headed the glob- tions, and philanthropists.

Support Group from page 16 the extended family, friends and neighbors. This fall the group will enter its third References Group members also developed relation- year. The continuing interest in this pro- the process of getting the diagnosis for ships with one another and between their gram demonstrates the need parents of Skuse, D. & Mandy, W. (2015) The female their daughters. This is not terribly surpris- daughters outside of the support group set- girls have for supportive communities. autism conundrum. Retrieved from https:// ing, as the literature tells us that girls with ting. We encourage this, as one of the goals Hopefully, the increased understanding of spectrumnews.org/features/webinars/we- these kinds of profiles are diagnosed on av- in our mission is to facilitate the creation the different presentations of ASDs will binar-the-female-autism-conundrum/ erage two years later than boys (Mandavil- of community for those with ASD and their lead to earlier diagnosis of girls, so they li 2015). The period before diagnosis can families. Additionally, many of the parents and their families can access the support Faherty, C. (2002) Asperger’s syndrome be difficult for parents, who are struggling were interested in expanding their daugh- they need. Parent support groups can be an in women: A different set of challenges? with children they don’t completely under- ters’ social circles. Their daughters had effective part of that support. Retrieved from http://autismdigest.com/ stand. Parents report receiving advice from experienced a great deal of social rejection aspergers-syndrome-in-women/ friends and family members that is unhelp- and the parents were very concerned about To learn more about AANE programs ful at best and at times insulting. In fact, an their isolation and loneliness. Nearly every and services as well as find information on Mandavilli, A. (2015) The lost girls. Re- early group meeting focused primarily on parent expressed pain at the social rejec- ASD in girls and women, please visit our trieved from https://spectrumnews.org/fea- the issue of feeling judged by members of tion each girl had experienced. website, www.aane.org. tures/deep-dive/the-lost-girls/ AUTISM SPECTRUM NEWS ~ FALL 2016 www.mhnews-autism.org PAGE 27

Manifests from page 18 the bilingualism. Many times the pedia- group facilitator meets with the parents, as There is at least one Parent Center in ev- trician tells the parent that their daughter a group, at the end of each session. When ery state. A list of the Parent Centers is More research is need regarding gender needs more time to catch up because she is parents connect with each other, they share available at www.parentcenterhub.org/ differences in autism. If recent trajectories exposed to two languages at the same time. experiences and resources they have found find-your-center. hold, autism expert Simon Baron-Cohen in the community. In this sense, it also Parent Centers provide information predicts that “once we’re very good at rec- Support for Parents with works as a support group for the parents. and support about special education top- ognizing autism in females, there will still Daughters on the Spectrum This connection also fosters friendship ics, trainings and local resources. Par- be a male bias,” Baron-Cohen says “It just among the girls. ent Centers empower families who have won’t be as marked as four to one. It might Adolescent girls with autism benefit In the long run, girls with autism might daughters with autism by helping them be more like two to one” (http://www.sci- from engaging in social skills groups spe- need ongoing counseling sessions with a understand their rights and the services to entificamerican.com/article/autism-it-s- cifically designed for them. These groups professional. Individual counseling is rec- which their children are entitled under the different-in-girls/). follow modules that address the needs of ommended when girls have trouble com- law, including social skills training and Families need to be aware that there are this age group, such as: hygiene, grooming municating their feelings and managing counseling. differences in symptoms of autism in girls. and the importance of physical appearance stressors in their daily lives, particularly If they have concerns, they should contact regarding perception, sexuality, dating, as they approach adulthood and new re- Resources for Families their pediatrician for a screening, then pos- friendship and peer pressure, bullying, sponsibilities. sible diagnosis (see Resources at the end of anxiety, anger management, living skills, For families that do not speak English CDC Learn the Signs-Act Early this article). social media management, and transition at home, the problem becomes more Another factor that might delay diag- to adult life. complicated when families have trou- Developmental Milestones: http://www. nosis in girls is the use of more than one Families that have girls in the autism ble finding resources. Parent Centers cdc.gov/ncbddd/actearly/milestones/ language at home. In these cases, autism spectrum disorder benefit from connecting play a great role assisting families that could be masked as a speech delay due to with other parents. Usually the social skills have difficulties navigating the systems. see Manifests on page 29

Autism Spectrum News 2017 Editorial Calendar

Winter 2017 Issue: Summer 2017 Issue: “Sexuality: Development, Risks, and Education” “Improving Health and Wellness for Individuals with ASD” Deadline: December 7, 2016 Deadline: June 1, 2017

Spring 2017 Issue: Fall 2017 Issue: “Supporting Adolescents with Autism” “The Latest Advances in Autism Science” Deadline: March 2, 2017 Deadline: September 7, 2017

To Submit an Article or Advertisement, Contact David Minot at [email protected]

Adolescence from page 19 her goal is deal with her menstrual cycle moting Transition Goals and Self-Deter- Differences in Autism Spectrum Disorder: each month independently, initially par- mination Through Student Self-Directed Evidence from a Large Sample of Children to pair this experience with a positive in- ents may help their daughter set up an Learning: The Self-Determined Learn- and Adolescents. Journal Of Autism and De- teraction. action plan on how to achieve that goal. ing Model of Instruction. Education and velopmental Disorders, 42(7), 1304–1313 Consultation with a psychologist or a Include methods on how to self-evaluate, Training in Mental Retardation and Devel- board certified behavior analyst (BCBA) make adjustments, monitor progress and opmental Disabilities, 35(4), 351-364 Miles, N. I. & Wilder, D. A. (2009). The can also provide guidance on the teaching review the plan to see if it was a success Effects of Behavioral Skills Training on methods or types of materials that would (Agran et al 2000). Remember to keep in- Allen, K. D. & Warzak, W. J. (2000). The Caregiver Implementation of Guided be appropriate to use with your daughter. structions simple, use visual cues, model Problem of Parental Nonadherence in Clinical Compliance. Journal of Applied Behavior Preparing your daughter for the changes instruction, practice, repeat, and reinforce Analysis, 42, 405-410. that come with adolescence, especially (Nichols 2009). Behavior Analysis: Effective treatment is during her first menstrual cycle, can ease While adolescence can be a stressful not enough. Journal of Applied Behavior Nichols, S., Moravcik, G. M., Tetenbaum, S.P., some fear and anxiety. Talking with her time for all individuals and their families, Analysis, 33, 373-391. (2009). Girls Growing Up On The Autism Spec- medical physician will help you under- females with ASD are faced with a unique trum. London: Jessica Kingsley Publishers. stand the developmental signs that may set of challenges. Females with ASD are Atwood, T., (2007). The complete guide be associated with this upcoming change. likely to require more direction and guid- to Asperger’s syndrome. London: Jessica Simone, R. (2010). Aspergirls-Empower- Her medical doctor may be able to guide ance than their neurotypical peers in order Kingsley Publishers. ing Females with Asperger’s Syndrome. you to websites that are approved by the to navigate puberty and sexual develop- London: Jessica Kingsley Publishers. American Academy of Family Physicians ment. By using evidenced based strategies, Cooper, J.O., Heron, T.E., Heward, W.L., (AAFP). Parents may want to review var- as one would to help their child acquire any (2007). Applied Behavior Analysis-2nd Stewart, K. K., Carr, J. E. & LeBlanc, L. A. ious teaching techniques and decide on new skill set, and obtaining guidance from Edition. Upper Saddle River, NJ: Pearson Evaluation of Family – Implemented Be- a method that would work successfully a professional with experience in working Prentice Hall. havioral Skills Training for Teaching Social with their daughter. Planning ahead of with females with ASD, parents can more Skills to a Child with Asperger’s Disorder. time and being proactive as much as pos- effectively support their daughters in suc- Kirkovski, M., Enticott, P. G., & Fitzger- (2007). Sage Publications, 6, 252-262. sible will help her know what to expect. cessfully navigating through adolescence ald, P. B. (2013). A Review of the Role of Teach your daughter some of the steps Elena Zaklis MA, BCBA and Rory Female Gender in Autism Spectrum Disor- Willey, L. H. (2012). Safety skills for Asperger of personal hygiene by using detailed vi- Panter PsyD, are from Behavior Therapy ders. Journal of Autism and Developmen- women: how to save a perfectly good female sual supports, using a task analysis and Associates in Somerset, New Jersey and tal Disorders, 43(11), 2584–2603. life. London: Jessica Kingsley Publishers. breaking tasks into smaller steps, and use can be reached at ezaklis@behaviorthera- positive reinforcement when your daugh- pyassociates.com or rpanter@behaviorth- Kreiser, N.L., White, S.W., (2014). ASD in Zamora, I., Harley, E.K., Green, S. A., ter is successful. The use of a wall calen- erapyassociates.com and at www.Behav- Females: Are We Overstating the Gender Smith, K., & Kipke, M. D. (2014).How Sex dar can also provide a monthly reminder iorTherapyAssociates.com. Difference in Diagnosis? Clinical Child of Children with Autism Spectrum Dis- and serve as a guide to review the steps Family Psychology Review, 17, 67-84. orders and Access to Treatment Services of how to prepare. Remember the goal References Relates to Parental Stress Autism Research is for your daughter to be independent Mandy, W., Chilvers, R., Chowdhury, U., and Treatment, Volume 2014, (2014) http:// and apply strategies to reach her goals. If Agran, M., Wehmeyer, M.L. (2000). Pro- Salter, G., Seigal, A., Skuse, D. (2011). Sex dx.doi.org/10.1155/2014/721418 PAGE 28 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2016

Work from page 11 to be included without having to conform. Some of the social behaviors we address About Marjorie We do not know if these are uniquely include: There is significant pressure for women women’s traits but would be delighted to I am the mother of a 20 year old young to “fit in” and that is not something most participate in research that studies the dif- • Manager-staff conversations woman with ASD. After a 30 year career women with ASD can do and many don’t ferences between men and women with au- in corporate marketing, I founded Yes She want to. tism in the workplace. • Appropriate “watercooler” topics Can motivated by my experience that the While my mission is not to fix this gender Some of the work behaviors we focus on best way to teach an individual with autism bias, we do work on these social skills in with our trainees include: • Summer attire at work is through immersive learning and leverag- our program. That is where typical female ing their passion. My daughter’s passions peers so are important and helpful to our • Collaborating with peers and knowing The women in our training program are Disney and American Girl dolls. Her trainees so we would like to have more typ- when and how to seek input from col- are very interested in social relationships career goal is to work at the American Girl ical peer mentors volunteer with program. leagues – this is especially hard given and are motivated to develop work skills store in the doll hair salon. During high Trainees at Girl AGain range in capa- the lack of theory of mind. in a collaborative setting. We have seen school she had been in a career readiness bilities but they have some common char- significant development in many of our program where she had several intern- acteristics: anxiety and fear of making a • When and how to take initiative – do- participants since joining Yes She Can ships in addition to being a trainee at Girl mistake. They wait to be told what to do ing work without having to be told to and our goal is to continue to help more AGain. She is currently enrolled in College and they expect help before exerting much do so, suggesting a solution to a prob- young women with Autism Spectrum Steps at Westchester Community College. effort. They lack resilience. On the other lem, or offering help to someone else. Disorders. For more information, contact Marjo- hand they want to please the manager and rie Madfis, President of Yes She Can Inc. their job coach and they desire to do a good • Accepting critical feedback – and Note: Yes She Can is seeking volunteer job at [email protected] or visit job. They know they have challenges and without falling apart, and then being coaches as well participants in an advisory www.YesSheCanInc.org. Yes She Can Inc. they want to overcome them. They want able to take the corrective actions. council. - Women with Autism. We work. With you.

Females from page 16 are not diagnosed, if they are able to com- female children and women if we do not Lai, M.C., Lombardo, M.V., Pasco, G., pensate for their difficulties? Yes, it does. recognise and treat their social communi- Ruigrok, A.N., Wheelwright, S.J., Sadek, sample of typical children, ascertained They cannot cover up those deficits forev- cation problems; it is a matter of urgency S.A., Chakrabarti, B., Baron-Cohen, S. and in the course of a UK birth cohort study er, and in any event the process of doing so to do so. MRC AIMS Consortium (2011). A behav- (ALSPAC study team, 2001). Unlike most is highly stressful. There is a developmen- ioral comparison of male and female adults trait measures, our screening questionnaire tal pattern, by which reasonably successful David H. Skuse, MD, FRCP, FRCPsych, with high functioning autism spectrum of social communication competence was adjustment to the social environment is of- FRCPCH, is Professor of Behavioural and conditions. PloS one, 6(6), e20835. not developed from a male ASD proto- ten achieved during the preschool and the Brain Sciences at the University College type, but from a female prototype (Skuse prepubertal period. Once puberty and ado- London and Honorary Consultant in De- Mandy, W., Chilvers, R., Chowdhury, U., et al, 2005). The provisional sex ratio of lescence supervenes, the social world be- velopmental Neuropsychiatry at the Great Salter, G., Seigal, A., & Skuse, D. (2012). those boys and girls at very high risk of comes so complex for girls with ASD that Ormond Street Hospital for Children, Lon- Sex differences in autism spectrum dis- ASD was found to be 2:1. This is exact- they find it hard to cope any longer. They don. For more information, please visit order: evidence from a large sample of ly the same sex ratio as has been reported typically respond with internalizing prob- https://www.ucl.ac.uk/ich or email Dr. children and adolescents. Journal of au- for children with ASD who have severe to lems, including depression and anxiety, Skuse at [email protected]. tism and developmental disorders, 42(7), profound learning disabilities (Fombonne, perhaps with self-harm and school-refusal, 1304-1313. 2003). We draw the inference that females with psychosomatic features. One striking References who are not learning disabled are often characteristic, rarely recognised by clini- Robinson, E.B., St Pourcain, B., Anttila, V., motivated and capable of ‘compensation’. cians, is that there can be major differenc- Adler, P. A., Kless, S. J., & Adler, P. (1992). Kosmicki, J.A., Bulik-Sullivan, B., Grove, Even if they have significant autistic traits, es in their behavior at home and at school Socialization to gender roles: Popularity J., Maller, J., Samocha, K.E., Sanders, S.J., their autistic vulnerabilities are not being (Mandy et al, 2012). Intense efforts are put among elementary school boys and girls. Ripke, S. and Martin, J (2016). Genetic risk recognised clinically; the higher their IQ, into compensating for social difficulties at Sociology of education, 169-187. for autism spectrum disorders and neuro- the greater the ascertainment bias. school, the typical high functioning female psychiatric variation in the general popula- We concluded that females with ASD with ASD being the ‘perfect child’, quiet ALSPAC Study Team. (2001). ALSPAC– tion. Nature genetics, 48(5), 552-555. traits and normal/high IQ are less likely and well behaved. In contrast, the child the Avon longitudinal study of parents and to be identified clinically, and we have who is lauded at school for her diligence children. Paediatric and perinatal epide- Skuse, D. H. (2000). Imprinting, the found evidence from this general popu- and excellent deportment is, at home, sul- miology, 15(1), 74-87. X-chromosome, and the male brain: ex- lation study (ALSPAC) that high verbal len, aggressive and even violent. Failure to plaining sex differences in the liability to IQ is protective for females (Skuse et al, recognise that this home-related behavior Blumberg, S. J., Bramlett, M. D., Kogan, M. autism. Pediatric Research, 47(1), 9-9. 2009). Genetic risk in the ALSPAC cohort is not due to inadequate or inappropriate D., Schieve, L. A., Jones, J. R., & Lu, M. C. was nevertheless shared with clinically parenting, but rather a reaction to the stress (2013). Changes in prevalence of parent-re- Skuse, D. H. (2007). Rethinking the na- identified samples of ASD, implying that and daily exhaustion of disguising her ported autism spectrum disorder in school- ture of genetic vulnerability to autistic the same neural substrates were likely to social-communication difficulties in the aged US children: 2007 to 2011–2012. Na- spectrum disorders. TRENDS in Genet- be responsible both for clinically signif- school environment, can lead to months of tional health statistics reports, 65(20), 1-7. ics, 23(8), 387-395. icant manifestations and for more subtle inappropriate family therapy. Parent-blam- ASD traits (Robinson et al, 2016). In oth- ing does not help anyone to deal with the Boraston, Z., Blakemore, S. J., Chilvers, R., Skuse, D. H., Mandy, W. P., & Scourf- er words, there is a continuum of genetic underlying issues. & Skuse, D. (2007). Impaired sadness recog- ield, J. (2005). Measuring autistic traits: risk between clinically identified autism In summary, there is emerging evidence nition is linked to social interaction deficit in heritability, reliability and validity of the and autistic traits in the general population that the true sex-ratio in ASD is 2:1 across autism. Neuropsychologia, 45(7), 1501-1510. Social and Communication Disorders – the term ‘neurotypical’ is only relatively the entire range of verbal intelligence. As- Checklist. The British Journal of Psychia- true for either sex. certainment bias has bedeviled the inter- Fombonne, E. (2003). Epidemiological sur- try, 187(6), 568-572. If females at high ASD risk are really pretation of research studies into genetic veys of autism and other pervasive develop- able to compensate at least in part for their risk, because there has been an over-rep- mental disorders: an update. Journal of autism Skuse, D.H., Mandy, W., Steer, C., Miller, difficulties, then this should mean they resentation of girls with developmental and developmental disorders, 33(4), 365-382. L.L., Goodman, R., Lawrence, K., Emond, have learned how to interpret social cues learning difficulties in such samples – gen- A. and Golding, J. (2009). Social commu- by a conscious rather than by an intuitive eralized learning disorders can have their Kanner, L (1943) Autistic disturbances of nication competence and functional adap- process. Using a novel test of emotion rec- own genetic etiology and confound stud- affective contact. Nervous Child, 2, 217-250 tation in a general population of children: ognition (Boraston et al, 2007) that they ies into ASD-risk genes (Skuse, 2007). preliminary evidence for sex-by-verbal IQ would not have seen before (and for which Research into female-typical ASD has Kanner, L. (1971). Follow-up study of differential risk. Journal of the American they could not have learned the appropri- been hampered by the fact that the diag- eleven autistic children originally reported Academy of Child & Adolescent Psychia- ate response), we found that high-risk girls nostic template for the condition has, for in 1943. Journal of autism and childhood try, 48(2), 128-137. in our general population sample had great 70 years, been male. Most standardized schizophrenia, 1(2), 119-145. difficulty answering correctly. Their perfor- instruments that are widely used in ASD Zablotsky, B., Black, L. I., Maenner, M. J., mance was no better than that of high-risk research in North America reflect this bias, Kothari, R., Skuse, D., Wakefield, J., & Schieve, L. A., & Blumberg, S. J. (2015). boys (Kothari et al, 2016). Yet on a com- thus studies that use those instruments are Micali, N. (2013). Gender differences in Estimated Prevalence of Autism and Oth- parison task of face-recognition emotion destined to perpetuate the myth that autism the relationship between social communi- er Developmental Disabilities Following (a skill that could have been learned), they is extraordinarily rare among ‘high func- cation and emotion recognition. Journal of Questionnaire Changes in the 2014 Na- performed perfectly well (unlike the boys). tioning females’ – what used to be called the American Academy of Child & Adoles- tional Health Interview Survey. National Does it matter if girls with ASD traits Asperger syndrome. We are failing those cent Psychiatry, 52(11), 1148-1157. health statistics reports, (87), 1-21. AUTISM SPECTRUM NEWS ~ FALL 2016 www.mhnews-autism.org PAGE 29

Perspective from page 15 the autism spectrum in a population cohort Summaries, 65(3), 1–23. Research Units on Pediatric Psycho- of children in South Thames: The special pharmacology (RUPP) Autism Network BCBA-D, is Assistant Professor of Pedi- needs and autism project (SNAP). Lancet, King, B. H., Hollander, E., Sikich, L., (L. Scahill, Corresponding author) atrics, and Lawrence Scahill, MSN, PhD, 368, 210–215. McCracken, J. T., Scahill, L., Bregman, (2002). Risperidone in children with is Professor of Pediatrics at the Marcus J. D., … Ritz, L., (2009). For the STA- autism for serious behavioral problems. Autism Center and Emory School of Med- Baron-Cohen, S., Lombardo, M. V., Auy- ART Psychopharmacology Network. New England Journal of Medicine, icine. Please address correspondence to eung, B., Ashwin, E., Chakrabarti, B., & Lack of Efficacy of Citalopram in Chil- 347(5), 314-321. Dr. Tom Cariveau, 1920 Briarcliff Rd NE, Knickmeyer, R. (2011). Why are autism dren With Autism Spectrum Disorders Atlanta, GA 30324, email tom.cariveau@ spectrum conditions more prevalent in and High Levels of Repetitive Behavior. Research Units on Pediatric Psycho- choa.org, or call (404) 785-9363. males? PLoS Biol., 9, e1001081. Archives of General Psychiatry, 66(6), pharmacology (RUPP) Autism Network 583-590. (2005). Randomized, controlled, crossover References Bearss, K., Johnson, C., Smith, T., Le- trial of methylphenidate in pervasive de- cavalier, L., Swiezy, N., Aman, M., … Kreiser, N. L. & White, S. W. (2014). ASD velopmental disorder. Archives of General Aman, M. G., McDougle, C. J., Scahill, L., Scahill, L. (2015). Effect of parent train- in females: Are we overstating the gender Psychiatry, 62:1266-74. Handen, B., Johnson, C., Stigler, K. A., … ing versus parent education on behavioral difference in diagnosis? Clinical Child and Wagner, A. (2009). Medication and parent problems in children with autism spectrum Family Psychology Review, 17, 67-84. doi: Scahill, L., McCracken, J.T., King, B.H., training in children with pervasive devel- disorder: a randomized clinical trial. The 10.1007/s10567-013-0148-9 Rockhill, C., Shah, B., Politte, L., …. Mc- opmental disorders and serious behavioral Journal of the American Medical Associ- Dougle, C.J. and Research Units on Pediat- problems: Results from a randomized clin- ation, 313(15):1524-1533. doi:10.1001/ Mandy, W., Chilvers, R., Chowdhury, U., ric Psychopharmacology Autism Network ical trial. Journal of the American Acad- jama.2015.3150. Salter, G., Seigal, A., & Skuse, D. (2011). (2015). Extended-release guanfacine for emy of Child and Adolescent Psychiatry, Sex differences in autism spectrum disor- hyperactivity in children with autism spec- 48(12), 1143-54. CDC (2007). Surveillance summaries. der: Evidence from a large sample of chil- trum disorder. American Journal of Psy- Morbidity & Mortality Weekly Report dren and adolescents. Journal of Autism and chiatry, 172(12):1197-206 American Psychiatric Association. (2013). (MMWR) 56(SS-1): 1–28. Developmental Disorders, 42, 1304-1313. Diagnostic and statistical manual of men- Shillingsburg, M. A., Bowen, C. N., & tal disorders: DSM-5. Washington, D.C: CDC (2016). Prevalence and characteris- Reichow, B. (2011). Overview of me- Shapiro, S. K. (2014). Increasing social American Psychiatric Association. tics of autism spectrum disorders among ta-analyses on early intensive behavioral approach and decreasing social avoidance children aged 8 years—Autism and devel- intervention for young children with au- with autism spectrum disorder during dis- Baird, G., Simonoff, E., Pickles, A., Chan- opmental disabilities monitoring network, tism spectrum disorders. Journal of Autism crete trial training. Research in Autism dler, S., Loucas, T., Meldrum, D., & Char- 11 sites, United States, 2012. Morbidity and Developmental Disorders, 42, 512- Spectrum Disorders, 8, 1443-1453. doi: man, T. (2006). Prevalence of disorders of and Mortality Weekly Report, Surveillance 520. doi: 10.1007/s10803-011-1218-9 10.1016/j.rasd.2014.07.013

Manifests from page 27 drome to Resolve Issues That Girls and network that works to keep families at the she helps parents, especially in Span- Women Face Every Day!” by Tony Attwood center of children’s health care for chil- ish-speaking communities, start and run (in Spanish) http://www.cdc.gov/ncbddd/ dren with special healthcare needs; in NJ, local special education support and advi- Spanish/actearly/milestones/index.html “Pretending to Be Normal: Living With Family Voices is housed at the Statewide sory groups. She also works with SPAN’s Asperger’s Syndrome” by Liane Holli- Parent Advocacy Network (SPAN), www. national Center for Parent Information If You’re Concerned: http://www.cdc.gov/ day-Willey spanadvocacy.org. SPAN is also the home and Resources which provides technical ncbddd/actearly/concerned.html of the state’s Family-to-Family Health In- assistance, tools and materials for the more “Girls Growing Up on the Autism Spec- formation Center. Lauren can be reached than 90 Parent Centers funded by the U.S. (in Spanish) http://www.cdc.gov/ncbddd/ trum: What Parents and Professionals at (800) 654-SPAN or by email at family- Department of Education to serve families Spanish/actearly/concerned.html Should Know About the Pre-teen and [email protected]. Families can find free of children with disabilities across the U.S. Teenage Years” by Shana Nichols help in their state at www.familyvoices. and territories. Myriam is a member of the Books on Autism and Girls org/states.php. NJ Special Education Advisory Council Lauren Agoratus is the parent of a child Myriam Alizo is the mother of two and has been a part of the National Center “Asperger’s and Girls: World-Renowned with autism/kidney disease. She is the NJ daughters and works at NJ’s Parent Train- for Learning Disabilities (NCLD) Parent Experts Join Those with Asperger’s Syn- Coordinator of Family Voices, the national ing and Information Center, SPAN, where Leader Team since 2010.

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 and Vocational Issues, College Coaching and Supports, Socialization, Self-Advocacy, Dating, and Relationships

For more information, visit www.ASDGroupsWestchester.com or contact the facilitators: Robin Kaufman, PhD, and Lauren Greiner, PhD | [email protected] 914 497-1590 Upcoming Meeting Dates: 2016 - 11/20, 12/18 2017 - 1/22, 2/26, 3/26, 4/23, 5/21, 6/18 Westchester Arc The Gleeson-Israel Gateway Center 265 Saw Mill River Road (Route 9A) Hawthorne, NY 10532 PAGE 30 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2016

Initiative from page 8 and the workplace. We learn about each We hope to expand the program in scope, Kathy Koenig, MSN, APRN, is Associate woman’s experience as they try to navi- so that new activities address unique chal- Research Scientist, Clinical Nurse Special- factor that emerged through the classroom gate through and understand their place the lenges for these girls such as developing ist in Psychiatry, and Director, Initiative discussions was that anxiety played a large world. A significant piece of this process is a healthy mind and body, developing pos- for Girls and Women with Autism Spec- role in impeding these women from pursu- helping young women feel self-confident itive relationships and an optimistic out- trum Disorders, Child Study Center at Yale ing the work they would like. Thus, our re- about who they are so they can advocate look for the future. Our Advisory Board, School of Medicine. For more information vised curriculum addresses this issue. The for what they want and need. which includes parents of girls on the about the Initiative for Girls and Women Lean Out Curriculum, participant work- In this program, we strive for an atmo- spectrum, professionals, and individu- with Autism Spectrum Disorders at the book and slides are available for download sphere that promotes relationship build- als on the spectrum, as well as additional Yale Child Study Center, please visit http:// at no charge is available on our website ing through sharing ideas and experienc- (anonymous) donors have helped in this childstudycenter.yale.edu/autism/clinical_ (http://childstudycenter.yale.edu/autism/ es. A lot of conversation about music, regard. Parents, young women and teens services/initiative/. clinical_services/initiative/young_adults/). movies and media, school work, parents have been very enthusiastic about the pro- We are hopeful this program will be used and friendships happens. Positive ener- gram, with requests for more activities. References and modified to fit the needs of young gy flows through the room as our partic- Our plan is to increase the opportunities women anywhere who need help with this ipants get to know one another, sharing for participation for girls of all ages and Saulnier, CA, Koenig, K, Naqvi, B, Mori- important life task. stories, videos and jokes. Participants all levels of functioning and we hope to uchi, J, & Klin, A (2016, May.) Adaptive A weekly support group for young wom- often exchange numbers and some get incorporate clinical training and research Behavior Profiles in Girls with Autism: A en began this past winter. Our group tack- together outside of the group. For many into the program over time. The Initiative Comparison to Previously Published Pro- les any subject that comes up, as partici- of our teens and young women, our ac- for Girls and Women with ASD provides files in Boys. Poster session presented at pants talk over what it means to cope with tivities are the only social opportunities an extraordinarily rich social experience the International Meeting for Autism Re- parents, siblings, the demands of college they have. for all who participate. search, Baltimore, MD.

Social Needs from page 9 they can share and build experiences. To and interviews between a woman and staff mation about Felicity House, please visit provide this, it is not sufficient to simply member, along with ongoing follow-up as www.felicity-house.org. “Activities with structure, like using Rob- gather women with ASD together. Pro- needed. Programming is varied and con- erts Rules or something…to help us know gram structures that take into account the sists of structured events such as lectures, References when to talk” effects of social information processing workshops, and special interest groups, as difficulties are required. In this respect, well as social routines like movie nights Begeer S, Mandell D, Wijnker-Holmes B, “For young women with ASD to not feel ideal supports are those based on principles and open hours. Each event is supported by et al. (2013) Sex differences in the timing alone or different and to have space (a of Universal Design, such as incorporat- at least one staff member and all activities of identification among children and adults place) to belong to, for once!” ing a design for activities that make them include modifications with an eye towards with autism spectrum disorders. J Autism adaptable with respect to pace and com- facilitating participation. Dev Disord 43: 1151-1156. The Literature on Women’s Experiences plexity. The latter requires a careful use of Special consideration is given to the visual supports; the goal is to supplement fact that Felicity House exclusively serves Hannah A and Murachver T. (1999) Gender The experiences reported by the women verbal information when necessary, with- adults, and programming reflects the ma- and Conversational Style as Predictors of in the focus group are consistent with the out overusing visual cues that can con- turity and sophistication of adult women. Conversational Behavior. Journal of Lan- research on typical social development and fuse or distract the participant. All in all, Activities are chosen based on participant guage and Social Psychology 18: 153-174. gender-based risks to mental health. First, this approach requires much pre-planning, interest and the feedback collected at each the level of skill required for social partic- opportunities for ongoing revisions of pro- event. Staff meet regularly to review and Hiller RM, Young RL and Weber N. (2014) ipation is significantly higher for females grammatic practices, and consultation with revise the content and design of the pro- Sex differences in autism spectrum disor- than for males. Starting in the early adoles- professionals who have expertise working gram activities and participants are in- der based on DSM-5 criteria: evidence cent years, girls are expected to be adept in with adults with ASD. cluded in this process through a monthly from clinician and teacher reporting. J Ab- relationship building skills not required of Due to the heterogeneity of ASD, an- program-wide leadership meeting where norm Child Psychol 42: 1381-1393. boys (Hannah and Murachver, 1999). So- other important program element involves Felicity House participants share ideas, ciety also places greater social demands on anticipating the variety of social communi- offer feedback and troubleshoot issues that Jamison TR and Schuttler JO. (2015) Ex- women that go beyond specific skills. As cation needs that can occur with this condi- may affect participation. amining social competence, self-percep- noted by a recent article in the Spring 2016 tion. At the group level, this can be accom- To make the program accessible, partic- tion, quality of life, and internalizing and issue of Autism Spectrum News by Dr. Mi- plished via a menu of programs that caters ipation is at no cost to the women. There externalizing symptoms in adolescent fe- lot, the current social culture exerts unique to diverse needs, including experiences is no requirement of functional limitations males with and without autism spectrum pressures on adult women to take on care- that are rich in opportunities for discussion for inclusion. On the contrary, the goal at disorder: a quantitative design including taking roles and conform to particular ex- as well as those designed for participants Felicity House is to provide support for between-groups and correlational analy- pressions of femininity (Milot, 2016). Such who are more interested in doing than women who are able and ready to increase ses. Mol Autism 6: 53. patterns of socialization create added chal- talking. Programming content should also their social participation, including those lenges for women on the spectrum. As a re- be informed by the experiences and inter- that may not be able to access state-funded Kessler RC, McGonagle KA, Zhao S, et al. sult, the social gaps between non-affected ests of the women. Differences in social resources due to eligibility thresholds. (1994) Lifetime and 12-Month Prevalence females and females with ASD are greater motivation are also important factors that of DSM-III-R Psychiatric Disorders in the than they are for their male counterparts. affect participation. Thus, identifying spe- What Have We Learned? United States: Results from the National Beyond gender-based differences in so- cial interests, as well as previous negative Comorbidity Survey. Arch Gen Psychiatry. cialization, a not so insignificant challenge experiences, is essential at the individual The needs of women with ASD are made 1994;51: :8-19. for women with ASD is that they are more level. Additionally, programs will require complex by gender-specific expectations of likely to have been diagnosed later in life participation and staffing models that can social participation, minority status within Milot, Alissa S (2016) The Unique Inter- than their male peers (Begeer et al., 2013). account for changing mental health needs. the ASD population, later access to a for- personal Demands for Women with ASD: Such differential access to formal diag- As best practice, this involves highly indi- mal diagnosis, and increased rates of anx- Implications for Gender-Specific Supports noses is concerning because it means less vidualized participation plans and mecha- iety and depression; all of which ultimate- for Adults. Autism Spectrum News 8:4. access to services and intervention, which nisms for fostering thoughtful discussions ly may lead to poorer outcomes than their in turn, increases the risk for mental health with each participant around their social male peers. Increased availability of social Taylor, JL, Henninger, NA, Mailick, MR. problems that are already heightened for goals and mental health needs. programs designed specifically for women (2015) Longitudinal patterns of employ- the female gender (Kessler et al., 1994). In- with ASD is needed and they may be an im- ment and postsecondary education for deed, as compared to typically developing How Does Felicity House portant mechanism to improving outcomes. adults with autism and average-range IQ. girls, those diagnosed with ASD exhibit Meet These Unique Needs? However, such programs must take into ac- Autism 19: 785-793. significantly more internalizing symptoms count the complex needs and heterogeneity such as anxiety and depression (Jamison & Established in 2015, Felicity House is a of the population, and there is still a great Van Wijngaarden-Cremers PJ, van Eeten Schuttler, 2015). non-clinical program designed to support deal to be learned about how to best support E, Groen WB, et al. (2014) Gender and age the social development of women with a women to meet their social needs. differences in the core triad of impairments Supporting Adult Women with ASD diagnosis of ASD. The program has dedi- in autism spectrum disorders: a systemat- cated space with a design that accommo- In addition to her role as Senior Advisor ic review and meta-analysis. J Autism Dev As expressed by our focus group partic- dates large and small group activities, as at Felicity House, Marisela Huerta, PhD, Disord 44: 627-635. ipants, adult women with ASD are lacking well as rooms designed to provide restor- is an Assistant Professor of Psychology social opportunities that are inclusive of ative, quiet activities. Participation plans in Psychiatry at Weill Cornell Medical Wilson CE, Murphy CM, McAlonan G, et their needs and interests. As opposed to are flexible and individualized; they are College and an Attending Psychologist at al. (2016) Does sex influence the diagnos- didactic activities, the women described a uniquely informed by a new member pro- NewYork-Presbyterian/Center for Autism tic evaluation of autism spectrum disorder need for a community of their own where cess which includes a series of meetings and the Developing Brain. For more infor- in adults? Autism. AUTISM SPECTRUM NEWS ~ FALL 2016 www.mhnews-autism.org PAGE 31

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