AUTISM COLUMBUS
Autism Columbus Fall 2014
NATIONWIDE CHILDREN'S HOSPITAL
Toolkits Available!!! The Autism Speaks School Community Tool Kit is a resource designed to assist all members of the school community in understanding students with autism.
The purpose of this kit is to provide helpful information about students with autism and tools and strategies to achieve positive interactions and increase learning for all members of the school community!
For a list of Autism Speaks/Autism Treatment Network toolkits visit: http://www.autismspeaks.org/family-services/tool-kits
Walk Now for Autism Speaks Columbus!
Thank you for your continued support of Walk Now for Autism Speaks Columbus!
This year’s walk will be held on Sunday, October 12 at Huntington Park. We’re gearing up for another great year in 2014, and have set our sights on exceeding last year’s fundraising totals. To make that happen, we need your help! It takes a passionate, volunteer team of individuals, families, corporate partners, schools, and other organizations to make our Walk one of the best in the country.
Sign up TODAY at: http://www.walknowforautismspeaks.org/faf/home/default.asp?ievent=1100630 When signing up, make sure you "opt-in" for our Columbus Monthly E-Newsletter, we have a lot going on in this great city that we can't wait to share with you!
If you are interested in VOLUNTEERING at our 2014 Walk, please e-mail [email protected]
Also, make sure to join in on the conversations at our local Social Media Sites and follow us on Twitter @AutismSpeaksCOL. We provide lots of local happenings in our Community, Autism Speaks Updates, Walk information, Resources and other items that you do NOT want to miss!
These materials are the product of on-going activities of the Autism Speaks Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Page 2 AUTISM COLUMBUS
Transition and Health Care Workshop Register Soon!! The Transition and Health Care workshop will focus on Featured Presenters: providing families and professionals an overview of the health care transition process for children and adults Christopher Hanks, MD with autism and other developmental disabilities. The The Center for Autism Services and Transition discussion will instruct attendees in the “how and (CAST) where” of healthcare transition in Central Ohio. The Ohio State University’s CAST program serves as If you are a parent, guardian or professional about to a centralized location where patients can access begin or need to begin the transition process, this is a multiple services in a single setting from great workshop to attend! physicians who are experiences and skilled in providing comprehensive care for adults with au- tism and tangent complex healthcare needs. Dr. Workshop Information Hanks and his team at CAST provide coordinated and consultative support for patient with chronic Location intellectual and medical illness as they transition from pediatric to adult care. Nationwide Children’s Hospital Stecker Auditorium 575 South 18th Street Columbus, OH 43214 Karen Ratliff-Schaub, MD http://www.nationwidechildrens.org/hospital-map Nationwide Children’s Hospital
Dr. Ratliff-Schaub is a Clinical Associate Professor of Date Pediatrics at The Ohio State University College of October 25, 2014 Medicine. She serves as the director of clinical 9:30am—3:00pm services at The Ohio State Nisonger Center, as well as co-director of the Leadership Education in Fee Neurodevelopmental Disabilities program. $20.00—Lunch Included She is also the Director of the Diagnostic Program at the Child Development Center at Nationwide To Register Children’s Hospital. Her primary clinical focus is interdisciplinary evaluations of children with www.autismohio.org autism and other developmental disabilities,
ongoing medical management, outreach to Stipends available community and primary care physicians and lynn.tramontano@ providing transition information and care to edwardjones.com patients and families.
Lunch Dietary Requests Professional Panel [email protected] The workshop will also feature a Health Care Power Attn: Kathi Machle of Attorney and Guardianship PANEL discussion by local experts!
Page 3 AUTISM COLUMBUS
The Center for Autism Services and Transition (CAST) If you have not already heard, Center who provides primary there is a new clinic open in Central care for adults with ASD and the
Ohio which will focus on providing medical director of health care services for adults with CAST. “Beyond that, we also For more information or to sched- autism. look for things like continuing ule an appointment: education courses or job oppor- The Ohio State University Wexner tunities to help them transition Medical Center is opening the Cen- into a world that can be very in- Center for Autism Services and ter for Autism Services and Transi- timidating for them.” Transition (CAST) tion (CAST), a new program to help young adults with autism gain inde- OSU Internal Medicine and Pediat- pendence on their transition to rics Hilliard adulthood. According to OSU, CAST 3691 Ridge Mill Dr. is one of only a few clinics in the country to provide care coordina- Hilliard, OH 43026 tion and primary and specialty care PH 614-688-9214 services for adults with ASD. FX 614-688-9249 Dr. Christopher Hanks “We want to provide a place where they can come for medical care knowing that we have an entire staff who truly understands their needs,” said Dr. Christopher Hanks, a physician at OSU Wexner Medical
Columbus City Schools - Transition Fair PLANT YOUR FUTURE TODAY by attending the Columbus th Downtown High School 364 South 4 Street, Columbus Columbus City Schools Ohio. Join representatives from CPS, FCBDD, BVR, Good- will, CCS Parent Mentors, Columbus MetroParks, and many is hosting a more to plan your child’s future. Light refreshments will be Transition Fair Night on provided…RAFFLE & PRIZES (including an iPad!)! November 11th Contact: from 6:00pm- 7:30pm Dan Burke
[email protected]) or Margaret Molli-Clark
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Solving Sleep Problems in Children with Autism Autism Speaks: What is the connection between Autism Speaks is pleased to spotlight the publication autism and sleep disorders? of Solving Sleep Problems in Children with Autism Spec- trum Disorders: A Guide for Frazzled Families. Dr. Malow: In brief, there are many reasons why children with autism tend to have problems sleep- The authors – neurologist Beth Malow and psycholo- ing – ranging from associated medical conditions gist Terry Katz pioneered the treatment of sleep prob- such as seizures and GI pain to challenges transi- lems in children with autism through their research tioning to bedtime and calming down their minds. and clinical work in the Autism Speaks Autism Treat- ment Network (ATN) and its federally funded Autism Autism Speaks: Please tell us about the research Intervention Research Network on Physical Health that inspired first your Autism Speaks ATN/AIR-P (AIR-P). tool kits on sleep and now this in-depth book.
Their new book expands on two Autism Speaks ATN/ Dr. Malow: In our studies, we showed that the AIR-P sleep tool kits – Strategies to Improve Sleep in reported link between autism and sleep problems Children with Autism Spectrum Disorder and Strategies was real. We found that parents could improve to Improve Sleep in Teens with Autism Spectrum Disor- their children’s sleep if we trained them in behav- der. Both can be downloaded free of charge here.) ioral strategies that work well for individuals with autism. This training proved effective whether the Like these tool kits, the new book grows out of the teacher – a nurse or psychologist – delivered it one authors’ multi-year studies of sleep problems in chil- -on-one or to groups of parents. In addition to im- dren with autism. Recently, Drs. Malow and Katz sat proved sleep, we saw improvements in the chil- down to answer questions about their book, research dren’s daytime behavior and in the parents’ sense and collaboration with parents. of competence. Autism Speaks: How did each of you come to recog- Autism Speaks: What’s the most important thing nize and focus on sleep problems among children with for parents to remember in approaching sleep autism? problems in children who have autism? Dr. Malow: As a sleep specialist with a newly diag- Dr. Katz: Start with small steps. Don’t feel like you nosed child with autism, I was encouraged to apply my have to make lots of major changes all at once. expertise to help solve a widespread problem in the We’ve been so impressed by how one or two autism community. The more parents I talked with, the steps – like delaying bedtime by a half hour or in- more I realized how much help that these sleepless troducing a visual schedule – can make a huge families needed. It’s been a tremendous journey. difference. (See Autism Speaks ATN/AIR-P Visual Supports tool kit here.) Dr. Katz: As a psychologist working with children with autism spectrum disorder, I’ve spent countless hours Autism Speaks: Can adults with autism benefit talking with parents about their children’s sleep diffi- from the strategies in this book? culties. They educated me on how these problems affected the entire family. In turn, they wanted to learn Dr. Malow: Many of its strategies apply to adults how they could help their children. It’s been incredibly as well as children with autism. Examples include gratifying to work with parents to apply what we sleep-friendly daytime habits such as limiting learned about the behavioral strategies that can help caffeine and increasing exercise as well as putting the whole family get a good night’s sleep. a relaxing bedtime routine into place Con’t on next page…. Page 5 AUTISM COLUMBUS
Autism Speaks: When should a family or individual seek professional help for sleep problems?
Dr. Malow: We recommend seeing a sleep specialist when an individual continues to have sleep problems de- spite the strategies in our tool kits and book. It’s also important to consult a healthcare provider if the individual snores [a possible sign of sleep apnea] or there are concerns about other possible medical condition affecting sleep. We want to stress the importance of a full medical evaluation to check for underlying medical issues.
Dr. Katz: When choosing a sleep specialist, it’s ideal to see someone experienced with individuals who have autis – for example at an autism center. If that’s not practical, we recommend consulting a doctor or therapist who is familiar with autism and its related health issues. Unfortunately, autism specialists are not available in every community. So it can help to bring a copy of our book or one of the Autism Speaks ATN/AIR-P sleep tool kit.
Autism Speaks: Outside of autism clinics such as those in the Autism Speaks ATN, how familiar are healthcare professionals with autism-related sleep issues?
Dr. Malow: We need to do more to educate the broader medical community, as well as school therapists and educators. The Autism Speaks ATN is playing a pivotal role with a major emphasis on community outreach that increases professional awareness of autism’s many co-occurring medical conditions.
Dr. Katz: For example, I recently provided a webinar on the ideas in our tool kits to a school district in Illinois. I know that the Autism Speaks ATN wants to do more of these professional trainings in the coming year.
Autism Speaks: With support from Autism Speaks, you’ve also done studies on melatonin to improve sleep in individuals with autism. Is this something that can be combined with the behavioral strategies in your book?
Dr. Malow: Yes, melatonin has shown promise in helping children with autism ease into sleep. It seems to be synergistic with behavioral strategies. In our studies, we saw minimal side effects with melatonin. That’s im- portant because many individuals with autism can’t communicate when something makes them feel worse.
That said, it’s important to talk with your child’s doctor about any medication – including over-the-counter sup- plements – that your child is taking. Any medication or supplement – including melatonin – has the potential to interact with other medicines or even mask a serious health condition.
Autism Speaks Walk October 12, 2014 Huntington Park See you there!! Page 6 AUTISM COLUMBUS
Ohio ABA Provider Issue Resolved
COLUMBUS (July 1, 2013) -- Gov. John Kasich has signed the state budget bill, which includes an amendment establishing a state certification process for providers of applied behavior analysis (ABA). With this resolved, ABA will be reimbursable when the state's new autism insurance coverage takes effect in 2014.
The issue arose earlier this year when Governor John Kasich signed an order requiring that ABA for autism be included in all insurance plans issued through Ohio's new health benefit exchange created under the Affordable Care Act. Under the amendment, the Ohio Board of Psychology will be responsible for certifying Board Certified Behavior Analysts (BCBAs) as "certified Ohio behavior analysts."
The amendment was produced by a working group of stakeholders and provider groups to assure no disruption in existing services while expanding access to quality ABA providers.
In addition to Ohioans who will start getting their insurance through the health benefit exchange in 2014, state employees have accepted Kasich's offer to have the benefit included in their health plans. Autism Speaks is committed to getting the coverage extended to all state-regulated health plans in Ohio.
Find your Ohio elected officials here:http://advocacy.autismspeaks.org/c.frKNI3PCImE/b.3932687/k.F652/ Find_My_Legislators/siteapps/advocacy/search.aspx COSI Event featuring Assistive Technology!
COSI will host another Autism Awareness and Activities Event on November 2, 2014. The event will focus on assistive technology options for children and youth with developmental and physical disabilities and will fea- ture vendors from many agencies.
To register, visit http://cosiautismevents.eventbrite $9 Per Person | Free to COSI Members | PRE-REGISTRATION IS REQUIRED Explore COSI in an autism-friendly environment.
Pre-registration is required. To maintain the best possible environment for participating children, early admis- sion to COSI is open to the first 250 pre-registered guests only.
A limited amount of need-based family assistance funding is available through the Autism Society of Central Ohio. For assistance please email: www.autismcentralohio.org
Parking is $5 per car in the lots surrounding COSI ($4 for COSI Members).
Parking validation is required. Please bring your parking stub into COSI with you. Page 7 AUTISM COLUMBUS
OSU Creates Play Featuring Lead Character with Autism
In Here Out There, a new work devised by the actors Where: The Bowen Theatre of the OSU Master of Fine Arts in Acting program, Drake Performance Center, 1849 Cannon Drive explores the journey of a young girl named Callie. Callie is thirteen years old, a bit of a tomboy, and obsessed Purchase tickets at the door or go to: http:// with superheroes. She is also a child with autism. This theatre.osu.edu/boxoffice show explores her challenges and triumphs in connecting with those around her, as well as the rich inner world that she has created. When: The nine actors of the MFA Acting cohort have been November 13 at 7:30 pm working since January to create this piece, inspired by November 14 at 7:30 pm their experience working with the Hunter Heartbeat November 15 at 3:00 pm and 7:30 pm Method, which uses Shakespeare to reach children on November 16 at 3:00 pm the autism spectrum. The actors have been actively November 18 at 7:30 pm engaged in workshops with children on the spectrum November 19 at 7:30 pm using Hunter's method. The Hunter Heartbeat Method, November 20 at 7:30 pm created by Kelly Hunter, is the subject of a study November 21 at 7:30 pm conducted by The Ohio State Department of Theatre and November 23 at 3:00 pm the Ohio State University Nisonger Center, exploring the ability of the work to affect change to the core features of autism.
OCALICON 2014 Register Soon!
OCALICON 2014 is a 3.5 day gathering of national leaders, educators, parents, self-advocates, scholars, policy-makers, and service providers who will examine common concerns and share proven solutions that ad- dress issues faced by individuals with autism and low-incidence disabilities across their lifespan.
OCALICON 2014 provides all participants with opportunities:
To Learn - over 150 lecture, discussion, and hands-on sessions are offered. In addition, the Research Symposi- um features current research and findings from leading universities and institutions To Connect - built-in :30 meeting time first thing each day, :30 between sessions, a :75 lunch, and :45 energy breaks each day provide numerous opportunities for networking and informal discussion To Build - summits focus on development and the informing of policy
Visit www.ocali.org to register! November 19-21, 2014 Greater Columbus Convention Center, Columbus, OH Page 8 AUTISM COLUMBUS
Autism and Reflux by Kent Williams, MD
“My adult autistic son has been spitting up. It seems to be triggered by anxiety, will last a day and then stop as quickly as it started. He’s on medication for gastric reflux and had endoscopies to open up a narrow esophagus. He also takes medication for seizures and has a hiatal hernia. Any suggestions?”
This week’s “Food for Thought” answer is from gastroenterologist Kent Williams, of Nationwide Children’s Hospital, in Columbus, Ohio — a member center of the Autism Speaks Autism Treatment Network (ATN).
It sounds like your son suffers from multiple issues related to gastroesophageal reflux disease (GERD) and/or rumination syndrome. I’ve frequently dealt with both in my Autism GI Clinic. GERD occurs commonly in the gen- eral population, including individuals with autism.
Rumination syndrome refers to regurgitation of stomach contents. Some individuals will spit the contents out. Others will re-chew and swallow. Once, we thought that rumination was primarily a problem for infants and indi- viduals with severe developmental delays. Now we know it occurs among individuals of all ages and ability levels. It appears to be particularly common among those who struggle with stress and anxiety – as is true of many indi- viduals with autism. Diagnosing rumination syndrome can be challenging. Often, it requires a GI specialist familiar with its subtle signs in combination with tests to evaluate the muscle activity in the esophagus and stomach.
You also mention that your son has a hiatal hernia. For readers who aren’t familiar with the condition, hiatal her- nia involves organs protruding (herniating) from the abdominal cavity into the chest cavity through an opening (hiatus) in the diaphragm. In your son’s case, I suspect this involves part of the stomach protruding through the hole around the esophagus, or “swallowing tube.” This condition often produces GERD.
The good news is that GERD caused by a hiatal hernia can usually be successfully treated with medications and/or lifestyle changes, as I’ll explain below.
Team approach to complex issues If you haven’t already, I strongly suggest finding a gastroenterology (GI) specialist, ideally someone familiar with autism. In treating such complex issues in an individual who has autism, I often seek input from other specialists such as a nutritionist, behavioral therapist and surgeon. This is one of the great advantages of seeking help at an Autism Speaks ATN center – where we emphasize comprehensive “whole person” care.
Lifestyle changes for GERD As for strategies you can try at home, let’s start with discussing your son’s GERD, as this may go far in relieving his spitting up. Several lifestyle changes can help.
First, I encourage avoiding late-night meals. This ensures that when your son lies down for sleep, there’s less stomach contents to reflux into his throat and mouth.
Second, I encourage avoiding fatty meals since they can delay stomach emptying.
Third, if your son is overweight, I strongly recommend a weight loss plan that includes a healthy diet and exer- cise. This is one of the most effective steps he can take to relieve GERD. If your son lives at home, the effort should involve the whole family making a commitment to eat healthier. If he lives independently or in a residen- tial facility, I recommend engaging the staff around mealtime choices. I generally recommend that my patients and their families meet with a nutritionist or dietician for personal diet counseling. Con’t on next page... Page 9 AUTISM COLUMBUS
Changing eating habits can prove particularly challenging when autism-related food issues include a reluctance to try new foods. In these cases, a team approach with both a nutritionist and a behavioral therapist may be needed. (Also see “Encouraging Picky Eaters with Autism to Try New Foods.”)
Medications for GERD A variety of medications can help treat GERD. You mention that your son is already taking one or more. In my prac- tice, I often switch medications or add another medication, when I see reflux that’s not adequately under control. Again, this will require a good specialist who knows your son and his complex issues.
In some cases, medications and lifestyle changes aren’t enough. You mentioned that your son’s esophagus had nar- rowed and required numerous endoscopies to widen it. Often, such narrowing involves scarring caused by the stomach acid that chronically backs up in the esophagus.
Acid reflux tends to be painful – at least early on. But unfortunately, many children and adults with autism aren’t able to communicate their discomfort. So the condition too-often progresses to the point where we see significant scarring and narrowing. Eventually, the damage is so severe that the individual may not be able to swallow food.
This is when it may be important to consider surgery or additional surgery. This isn’t a simple decision. Surgery in- volves its own risks. So the decision should be made with input from a qualified gastroenterologist and surgeon. They need to make sure that the benefits of the surgery outweigh the risks, and that the surgery is being done for the right reasons. I recommend getting a second opinion before undergoing any surgical intervention.
Rumination disorder Because anxiety appears to worsen your son’s spitting up, I recommend that he be evaluated for rumination syn- drome, which I mentioned briefly above. This disorder can mimic GERD or make it worse.
In my experience, it's common for a patient with autism to suffer from both GERD and rumination syndrome. When this occurs, both need to be treated. While a GI specialist can address both issues, rumination syndrome often in- volves anxiety or obsessive-compulsive behaviors. For this reason, I typically enlist the help of a psychologist or psy- chiatrist to address behavioral and emotional issues
Achalasia Another, less common condition should be considered with the help of a GI specialist. In achalasia, the muscles in the esophagus fail to relax as they should. As a result, food doesn’t pass easily from the esophagus into the stom- ach. In addition to spitting up, symptoms can include difficulty swallowing, coughing, recurring pneumonia and vomiting.
Typically, an X-ray shows the lower part of the esophagus to be narrowed. But the gold standard for diagnosing this condition is a motility study. This involves placing a catheter in the esophagus to measure pressure changes associated with muscle contraction. A motility expert places the catheter and interprets the results. As you can im- agine, placing a catheter in a patient with autism can be very challenging. While not easy, the chances for success- ful evaluation improves dramatically if the specialist has experience working with individuals who have special needs.
If tests indicate surgery is necessary, a surgeon may open up the muscles that surround the esophagus, to allow food to easily pass into the stomach.
I hope this information is helpful. Please let us know how you and your son are doing by emailing us again at Food- [email protected]. October Events
Center for Autism Spectrum Disorders
Triple P (Positive Parenting Program)- Stepping Stones Late Fall 2014: October 16th - December 11, 2014| 5:30pm— 8:00p.m.
** Parent Training offered as a clinical service to clients of the Center for Autism Spectrum Disorders
Sibshops: Boo Bash!
October 18, 2014 | 10:00 a.m. - 2:00 p.m.
** For more information contact an Autism Resource Coordinator at (614) 355-8315.
OCALI
Paraprofessional Training October 9 - 10, 2014 | 8:30 a.m. - 3:30 p.m.
Consider the Educational Environment October 16, 2014| 3:30 - 4:00pm
Accessible Instructional Materials (AIM)- Are your materials accessible? October 21, 2014| 3:00– 4:00 p.m.
**For more information, visit: www.ocali.org
www.nationwidechildrens.org/autism-treatment-network [email protected] November Events
Autism Society of Central Ohio
Delaware Turkey Trot 5k Run/Walk & Little Gobbler Kid’s Run November 27, 2014 | Registration begins at 7:00am
** For more information/registration, visit : www.delawareturkeytrot.com
COSI
Assistive Technology Vendors and Demonstrations November 2, 2014 | 9:00am - Noon. **Pre-Registration is required, please visit: http://cosiautismevents.eventbrite.com
Center for Autism Spectrum Disorders
Sibshops: Thanksgiving Gobble November 15, 2014 | 10:00 a.m. - 2:00 p.m. ** For more information, contact an Autism Resource Coordinator at (614) 355-8315
www.nationwidechildrens.org/autism-treatment network [email protected] November Events
OCALI
Reading Disabilities Resulting from Organic Dysfunction, Demystified November 3, 2014 | 3:00 - 4:00 p.m.
Accessibility to Mathematics for ALL Students November 5, 2014 | 5:00 - 5:30pm
Universal Supports for Students in Mathematics: Number and Operations K - 12 November 12, 2014 | 5:00 - 5:30 p.m.
Helping Students Read and Write Mathematics November 19, 2014 | 5:00 - 5:30 p.m.
OCALICON 2014 November 19– 21, 2014 | 8:00 a.m. - 12:30pm
** For more information, visit: www.ocali.org
www.nationwidechildrens.org/autism-treatmentnetwork [email protected] December Events
Center for Autism Spectrum Disorder (CASD)
Sibshops: Happy Holidays December 13, 2014 | 10:00 a.m. - 2:00 p.m.
** For more information contact an Autism Resource Coordinator at (614) 355-8315
OCALI
Positive Behavior Supports December 2, 2014 | 8:30 a.m. - 3:30 p.m.
Gear to Guide Engagement in Education December 4, 2014 | 3:30– 4:00 p.m.
Accessibility in a Bring Your Own Device Environment December 8, 2014 | 3:30 - 4:00p.m.
**For more information, visit : www.ocali.org
www.nationwidechildrens.org/autism-treatment-network [email protected] Activity Page– Coloring
Activity Page—Connect the Dots Page 16 AUTISM COLUMBUS
Our son has autism, and I'm that this imbalance – or a deficiency of omega-3s – may reading how omega-3 and contribute to some of the symptoms we see in autism omega-6 fatty acids improve and other neurodevelopmental disorders. But much mental focus. I’m wondering more study is needed to determine if this is so.
whether there’s evidence that they help individuals who have What do we know about EFA deficiency? autism. My little man is about Research has shown a relationship between fatty acid to become a big brother. So abnormalities and a variety of mental health disorders I’m also wondering about add- in adults. There are fewer studies looking at the ing these fatty acids to my diet association of fatty acid deficiency and during pregnancy and breast feeding. Could this reduce neurodevelopmental disorders in children. Overall, the the risk of autism in our second child? theory is that normal brain development and growth depend on essential fatty acids. So if a developing Today’s “Got Questions?” answer is by pediatrician Rachel fetus or child doesn’t receive enough, it may affect Goode (left) and pediatric psychologist Elisabeth Pulliam, brain development and increase the risk of who both practice in the Autism Speaks Autism Treatment neurodevelopmental disorders such as autism. Network (ATN) at Arkansas Children's Hospital, in Little Rock. Dr. Pulliam is co-author of the Autism Speaks ATN/AIR How much is enough? -P tool kit Exploring Feeding Behavior in in Autism: A Guide Established guidelines recommend that pregnant and for Parents. nursing women get at least 200 mg of DHA per day
through diet or supplements. Check the label of your These are great questions. We would like to share some prenatal vitamin. It may well contain this minimum information about fatty acids that may help in making recommended amount. High doses of DHA are not your decisions about supplementation. Let’s start by talk- recommended due to potential side effects. ing about fatty acids and the role they play in the body. We don’t have clear recommendations on supplement Essential Fatty Acids doses in children. Instead, experts generally Essential fatty acids (EFAs) are polyunsaturated fatty ac- recommend that children eat a diet rich in the foods ids. They’re important for healthy growth and develop- that contain essential fatty acids. (See above.) If you ment of the brain and immune system. The most im- feel that your child would benefit from a supplement, portant EFAs for brain development include two omega- we encourage you to discuss this with his doctor. 3s – eicosapentaenoic acid (EPA) and adocosahexaneoic acid (DHA) – and an omega-6 – arachidonic acid. But our How helpful are EFA supplements in treating autism bodies don’t produce these “good fats.” So we need to symptoms? get them through food or supplements. To answer this question, we need large, well-designed research trials using fatty acids to treat autism symp- Omega-3 fatty acids are abundant in fatty fishes such as toms. To date, the scientific literature contains the catfish, halibut, salmon, albacore tuna and shellfish; as results of two randomized, well-controlled trials well as tofu, canola oil, walnuts and some other nuts and (Amminger 2007 / Bent 2011). seeds. However, pregnant women are cautioned to limit fish intake to 8 to 12 ounces per week. Con’t on next page Omega-6 fatty acids are found in meat, eggs, dairy, and in vegetable and seed oils.
Western diets tend to have significantly more omega-6 than omega-3 fatty acids. Some research has suggested Page 17 AUTISM COLUMBUS
In neither study did supplementation produce a significant difference in social interaction, communication, repetitive behaviors or irritability. However, the investigators saw a trend toward improvement in hyperactivity in the children who received the supplements. These differences weren’t statistically significant. So we don’t know for sure if the improvement was due to the supplements.
That said, our ability to pick up significant improvements in autism symptoms may be limited by the challenge of measuring these changes in behavior in an objective manner. So we need larger and more- sensitive studies before we can recommend supplementation with EFAs to treat symptoms of autism.
Are EFA supplements safe to give my child? The good news is that, in the studies that have been done, omega-3 fatty acids showed few adverse side effects when taken short term. There were mild side effects, most related to bloating, diarrhea, cramping or gas.
But while omega-3 supplements can be considered “generally safe,” some precautions are in order if you’re considering such supplements for yourself or your child. First, it’s important to note that some fatty acid sup- plements come in formulas that include other nutrients. Some of these additional nutrients can produce unwanted side effects or vitamin toxicity if a child gets too much.
Also, some fatty acids have potentially harmful properties at high doses. High doses EPA, for example, can interfere with blood clotting and cause excessive bleeding. What’s more, we don’t yet know if it’s safe for children to take fatty-acid supplements long term. Long-term use simply hasn’t been studied in children.
Finally, essential fatty acid supplements, like many nutritional products, aren’t regulated in the way that pharmaceutical medicines are. So we have less information on their effects and product purity. Bottom line: If EFA supplements are something you would like to take during pregnancy or breast-feeding or give to your child, we strongly recommend that you include your or your child’s doctor in a discussion of the pros and possible cons.
As families with autism know well, there are few “one-size fits all” recommendations when it comes to any intervention – including supplements or diets. Different individuals respond differently. Since you – like many in the autism community – are clearly a reader, we’ve included links to some relevant studies below. Thanks again for your question. Let us know how you and your family are doing at [email protected]
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Autism Treatment Network: New Sites Announced
Over the following three years, Autism Speaks will invest close to $7.5 million to support the network’s mission of 7,000 children are included in the network’s clinical delivering the highest standard of whole-person care for registry. This has allowed researchers to study their children and adolescents with autism. medical and behavioral needs and resulted in more than 50 published studies.” “The high quality of our member centers has established our network as a leader in the development of medical best “We will also be placing a new emphasis on increasing practices in autism while building a solid platform for access to comprehensive autism care by training more on-going medical research,” says Autism Speaks Chief Science community health providers,” says ATN medical Officer Robert Ring. “The changes to the ATN being an- director Dan Coury. “At the same time, we’re redou- nounced here represent key decisions that will best position bling our efforts to support and empower families in the network to take on an enhanced mission focus and will navigating their child’s healthcare system.” help usher in a new strategic chapter for one of the crown jewels of the Autism Speaks science portfolio.” In joining the network, each member center formally commits to furthering all these goals in their Autism Speaks President Liz Feld adds, “I’d like to welcome communities. our new centers in Saint Louis and Irvine, California. We look Treatment guidelines and family tool kits! forward to working with our partners, old and new, to meet Clinicians within the ATN will continue developing and the often-complex medical and behavioral needs of our sharing guidelines for the highest standard of medical families. This work is so crucial given the stunning growth in care and support for families affected by autism. The autism’s prevalence and the unacceptably long waits for network’s specialists rank among the world’s leaders treatment that our families face in so many parts of the in addressing autism’s medical and behavioral issues. country.” In 2012, Pediatrics published a special supplement on autism-related medical issues that featured treatment Founded in 2005, the Autism Speaks Autism Treatment guidelines and research by ATN specialists. Network (ATN) is the first system of medical centers In addition, the ATN has published 18 widely used tool dedicated to improving the healthcare of children and kits on the medical needs of individuals with autism adolescents with autism spectrum disorder (ASD). Its mission and geared for both families and professionals. These is to provide integrated whole-person care that partners can be downloaded from the Autism Speaks website families with a coordinated team of specialists. free of charge at www.autismspeaks.org. These efforts are enhanced by federal funding for the ATN’s A commitment to research and treatment role as the nation’s Autism Intervention Research Net- A primary focus of the new cycle will be research on the work for Physical Health. health conditions commonly associated with autism, says Con’t on next page. Paul Wang, Autism Speaks senior vice president for medical research. “The network’s updated strategic plan will focus in even greater depth on the relationship between medical issues and long-term outcomes in ASD,” he says.
“Voluntary family participation is crucial to the ATN’s medical research,” adds Donna Murray, Autism Speaks senior director for medical research and head of the ATN. “Currently, nearly Page 19 AUTISM COLUMBUS
As of September 2014, the new roster of ATN centers will include: * University of Rochester, Rochester, New York * Lurie Center for Autism at Massachusetts General Hospital, Boston * Children’s Hospital of Philadelphia * Arkansas Children’s Hospital Research Institute, Little Rock * Vanderbilt University, Nashville * University of Pittsburgh Medical Center * The Kelly O’Leary Center for Autism Spectrum Disorders at Cincinnati Children's Hospital Medical Center * Children’s Hospital of Los Angeles * Nationwide Children's Hospital, Columbus * Knights of Columbus Child Development Center at SSM Cardinal Glennon Children's Medical Cen- ter and Saint Louis University School of Medicine * The Center for Autism Neurodevelopmental Disorders at the University of California, Irvine * The University of Missouri’s Thompson Center for Autism, Columbia * Holland Bloorview Kids Rehabilitation Hospital, Surrey Place Centre and The Hospital for Sick Chil- dren, Toronto, Ontario * Glenrose Rehabilitation Hospital – University of Alberta, Edmonton For more information, please visit: http://asatn.org/
Research Opportunity for Local Families
Participating in autism research locally is possible! At Nationwide Children's Hospital Child Development Center, we are working on a variety of research projects that may be of interest to families.
Currently, we are conducting a research project for children between the ages of 2-8 who are receiving at least 10 hours of early intensive behavior intervention per week, and have a diagnosis of autism spectrum disorder, autism, Asperger’s, or pervasive developmental disorder.
Our research team is very willing to coordinate with families to ensure that time on the study fits into their busy schedules. We can meet families at school or other appointments as needed to collect needed data for the research project.
For more information on this study or other research opportunities, please contact Sheryl Ann Suffren, our lead Research Coordinator at: [email protected] AUTISM COLUMBUS
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