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Last week, the Autism Science Foundation attended the 8th Annual Rockland Autism Symposium! We were proud to be co-sponsoring the event for the fifth year in a row, as well as eager to hear all about the latest science from the speakers that presented at the event. While at the symposium, we sat down with two of the day’s speakers to hear first-hand about the work they’ve been doing.

First, we spoke with Dr. Joshua Diehl (and his robot, Kelly!) about robots being used in autism therapy. Dr. Joshua Diehl is a William J. Shaw Assistant Professor of Psychology at the University of Notre Dame and an Associate Editor of the Journal of Autism and Developmental Disorders. His research focuses on understanding and improving social-communication in individuals with Autism Spectrum Disorder. More recently, he has been interested in the utilization of adaptive technology, an area of research that has not kept pace with the rapid development, and subsequent marketing of products for use with individuals with ASD. His work is interdisciplinary by nature; he has published his work in prominent journals and book chapters in the fields of psychology, speech-language pathology, linguistics, robotics, and disability studies. His work on the clinical uses of robots for ASD treatment has been featured on NBC, MSNBC, PBS, Times of India, WebMD, and the Wall Street Journal. Dr. Diehl received his B.A. from Princeton University in Psychology, and a Ph.D. in Clinical Psychology from the University of Rochester, where he was a LEND fellow. He completed a clinical psychology internship at Golisano Children’s Hospital in Rochester, New York and a Postdctoral Fellowship in Childhood Neuropsychiatric disorders at the Yale Child Study Center. Dr. Diehl has received recognition for his research, teaching, and clinical work. He is also a proud “sib;” his little brother was born with a developmental disability and is the inspiration for his work.

 

 

 

Next, we caught up with Dr. James Chok, who spoke with us about Obsessive Compulsive Disorder and autism. Dr. Chok is a licensed psychologist, neuropsychologist, and Board Certified Behavior Analyst. Dr. Chok received his doctoral degree from the University of North Carolina and completed a one-year internship and two year postdoctoral fellowship in neuropsychology at McLean Hospital/Harvard Medical School. He is currently a Behavioral Psychologist/Neuropsychologist at Melmark New England. Dr. Chok is also the Director of Training for Massachusetts School of Professional Psychology practicum at Melmark New England. He has authored several papers in peer-reviewed scientific journals and presented research findings at numerous professional conferences. In 2011, Dr. Chok was the recipient of the Outstanding Practitioner Award given by the Berkshire Association for Applied Behavior Analysis and Therapy. He is currently investigating the assessment and treatment of obsessive-compulsive behavior in individuals with autism spectrum disorders, teaches courses in research design and measurement at UMASS Boston and Endicott College, and is the Vice President of the New Hampshire chapter of the International OCD Foundation.

 

 

We hope to see you at the Rockland Autism Symposium next year!

In a case with important implications for the full inclusion of students with disabilities, the New Jersey State Interscholastic Athletic Association (NJSIAA) agreed  for the first time to waive its eligibility rules to allow a student with an Individualized Education Program (IEP) to remain a starting player on a high school football team for a fifth season.

Anthony Starego was the starting placekicker for Brick Township High School’s varsity football team at the end of the 2012 season, his fourth year on the team’s roster. Anthony had even scored the game-winning points for the team during a game that season.

Antony Starego has autism, and is an Individualized Education Program (IEP) student who is entitled to remain at Brick Township High School until he is 21. Anthony wanted to continue to play football for his school for one more season, and his school applied to the NJSIAA for a one-year waiver of its “four year” and “eight semester” limit on how long someone can play a competitive high school sport.

While technically Anthony had already played for Brick for four years, Anthony spent his first year working with Brick’s coaching staff to find a position on the team that was suitable to his strengths as well as his limitations. During that first season, the team often ran its plays on the side of the field opposite from where Anthony was positioned. Luckily, after trying many positions and putting in lots of hard work with his coaches and his father, Anthony found his calling as the team’s placekicker. In coming seasons, Anthony became a starting player and a valuable member of the team.

Brick High School applied to the NJSIAA for a one-year waiver of the “four year” and “eight semester” eligibility rule. The granting of this waiver would make up for Anthony’s “lost” freshman year on the team. None of the schools against which the Brick football team competed objected to granting Anthony a fifth year of eligibility.

Unfortunately, the NJSIAA denied the application, asserting that Anthony was too old to continue to play, that he would “displace” other players, would create an undue safety risk, and would give Brick an “unfair competitive advantage.”  The Staregos, represented by lawyer Gary Mayerson, then went to Federal District Court seeking to enjoin the NJSIAA ruling, stating that the NJSIAA’s denial of the waiver violated the Americans with Disabilities Act (ADA). In the meantime, Anthony began practicing with the Brick football team, not knowing if he would ever be allowed to play competitively on the team again.

On September 9, 2013, the court denied Anthony’s ADA claim. However, in its ruling the court explicitly rejected every one of the reasons that the NJSIAA had given for denying the waiver. Based on this mixed rulings, the Staregos filed an amended complaint asserting an additional discrimination claim under the Individuals with Disabilities Educaiton Act (IDEA), and made filings with the New Jersey Superior Court.

Then, on September 27, hours before the Brick’s third football game of the semester, good news came. The NJSIAA had reconsidered their first ruling, and Anthony would be allowed to play out the remaining eight games of this football season. This was the first time the NJSIAA had ever allowed a student to play for a fifth year.

Obviously, this ruling meant a lot to the Staregos. Anthony said that he was excited to get to continue to play for Brick and “hold my head up high.” But what does this case mean for other people in situations similar to Anthony’s? We caught up with the Staregos’ lawyer Gary Mayerson to ask him some questions about this case.

ASF: The press release about this case says that when Anthony began to truly compete with the team as a placekicker, “a light went on” for him. How did football help Anthony off the field?

Gary Mayerson: To say the least, when Anthony was selected to be a starting placekicker for his varsity team, his self-esteem and confidence grew exponentially. According to his parents, a once quiet and shy student became a “jokester” almost overnight. Being a respected and admired member of the football team gave Anthony social entrée into school that he had not previously experienced. It also gave Anthony a sense of purpose. As Anthony told his parents, “I want to continue kicking field goals to make points for my team so that I can hold my head up high.”

ASF: What do you think was the catalyst that caused the NJSIAA to reconsider its original ruling and allow Anthony to compete for the rest of the football season?

GM: My best guess is the fact that the district court, while denying Anthony’s motion for a preliminary injunction, nevertheless rejected each and every one of the grounds upon which the NJSIAA had rejected the request for a one year waiver of the NJSIAA’s rules. In light of these adverse findings by the federal court, it was actually a very opportune time for the NJSIAA to settle because of the possibility of further adverse rulings at the federal or Superior Court levels. Additionally, all of the schools that Brick competes against communicated that they did not have any problem with Anthony continuing to compete. The NJSIAA was running out of reasons to bar Anthony.

ASF: You’ve said that this case represents “the next frontier for inclusion – competitive inclusion.” What needs to happen in every school in order for this next frontier to become a reality today?

GM: In the 1950s, the federal government was compelled to send in troops to ensure the safety of African-American students who had the right to attend an otherwise all-white school. Today, half a century later, President Obama is in his second term. Inclusion in the context of special needs students also is an evolutionary process because so much turns on changes in the public’s collective attitude. In the past, inclusion of special needs students in sports activities meant warming the bench or serving as the team’s mascot or equipment manager. In Anthony’s case, he is genuinely competing in every sense of the word. His high school supported the application for a “one further season” waiver but I would imagine that there are many more schools that would not have had the courage to take that step. “Inclusion” is not just a catch phrase to be trotted out at an in-district symposium. Just as is the case with anti-bullying policies, the public school must devote resources and training and otherwise make the commitment to “own” inclusion.

ASF: Anthony’s father has been quoted as saying, “We really believed in this so much. Not just for Anthony, but for all the good that can come from this regarding awareness for autism and kids that come after him. We understand the importance of this situation.” What precedents does this case set, especially for other students with autism with IEPs?

GM: Since the parties reached an amicable settlement, the ultimate legal precedent will be left to a future court to decide (whether the federal IDEA or ADA statutes control over conflicting state regulations). However, for IEP students who are participating in extracurricular sports activities, an important lesson is that the student’s IEP should expressly reflect the student’s participation in sports. Indeed, for IEP students participating in sports, specific goals (e.g. addressing domains such as social, communication, behavior, attention, etc.) can be developed that correspond to the sports activity.

For our third post in our Getting to Know ASF Grantees blog series, we’re happy to help you get to know Dr. Jill Locke. Dr. Locke was the recipient of a 2011 postdoctoral grant from ASF, with which she studied Implementing Evidence-Based Social Skills Interventions in Public School Setting. She is also the recipient of ASF’s 2013 3-Year Early Career Award. 

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What originally inspired you to begin research in your field?

I first became interested in autism when I learned that my youngest cousin was diagnosed. At the time, I didn’t know what that meant. I remember hearing stories about my cousin’s difficulty in school, but I really didn’t know much else about autism. I was intrigued and motivated to learn more. Around the same time, I was teaching preschool part-time, and three students with autism rotated through my classroom. I distinctly remember one of my students with autism, “Johnny”, was preoccupied with vacuum cleaners; he turned every toy he played with into a vacuum cleaner. The other children in my classroom quickly learned that playing with Johnny meant playing with vacuum cleaners, and sadly, Johnny was often isolated from his peers. I was concerned because I did not know how to help Johnny engage with his peers. Luckily, UCLA had a wealth of autism experts, and I had the opportunity to enroll in Ivar Lovaas’ course to learn more about how to work with children with autism.  I developed a solid understanding of behavioral principles in working with children with autism that provided a solid foundation for me, but I was surprised to discover that interventions (at that time) targeting social ability were neither common nor well tested. So, I became interested in the development and evaluation of interventions targeting social ability in children with autism. I was fortunate to work with Connie Kasari in graduate school who had a school-based project that examined the effects of two different social skills interventions on peer relationships for children with autism in included settings. It was then, I knew I found my niche.

Can you describe the work that you did in 2011 with the ASF grant?

Certainly. In this study, I modified a social skills intervention that was designed for expert clinicians to use so that it could be used by school personnel to improve the social involvement of children with autism in public schools. Traditionally, interventions that have been proven efficacious, meaning there is evidence that the intervention works in improving certain outcomes, in university or lab settings have not been successfully implemented or sustained in real-world settings such as schools. These interventions are sorely needed in community settings particularly urban public schools that have a growing number of children with autism and limited resources. I tested this modified intervention to see whether the intervention is as successful when school personnel deliver it. My hope was that by training school personnel, I would be able to increase children’s opportunities to practice social skills with their peers at school and increase their opportunities for generalization and maintenance in a cost-efficient way. I thought that once school personnel were trained that schools would have a built-in mechanism for continued support that will help many children with autism. In some ways, this was true. The school personnel in this study were able to learn the intervention and use it accurately, and we saw positive changes in children’s social engagement on the playground and social network affiliations. However, there were a number of unanticipated barriers to implementation that prevented the continued use of the program.

Can you describe what you’re doing now?

My current work builds off of my 2011 ASF grant. I am now trying to identify school-level challenges that interfere with the implementation of the intervention I modified during my postdoc (my 2011 ASF grant). I am in the process of identifying common barriers that prevent schools from using this type of intervention and devising strategies in partnership with schools to support the implementation and continued use of this intervention. Once this phase is complete, I will randomize schools to one of two conditions: 1) training school personnel in the modified intervention only; or 2) training school personnel in the modified intervention as well as working with administrators to use additional implementation strategies to support the program at the school-level. My goal is to determine if the addition of working with schools on implementation improves the sustainability of the program.

What would you like to see studied more in the field of autism research?

I think there are many avenues of autism research that need to be studied. Personally, I would really like to see more applied research that directly helps families address concerns they experience on a daily basis for adolescents and young adults. This is an area worthy of more research as many children transition out of services during that period (despite their need) and so much is unknown at this point.

Of our current grantees (other than yourself!), is there a study that you are most excited about?

I’m impressed by all of the studies that ASF is currently funding! I feel very fortunate to be among this select group of budding researchers. I think all of these studies will be important in our understanding of the brain as well as the genetic and environmental underpinnings of autism, but I am most excited about Dr. Badeaux’s research project because it has potential implications to reverse abnormalities in the brain at such a young age.

Lastly, what do you like to do when you’re not working in the field of autism research?

When I’m not working, I love to watch movies, hang out with my family and friends, cook, play with dogs, and travel to new places, so I can pretend to be a photographer!

Links to Dr. Locke’s work can be found here:

Improving Social Involvement of Children with ASD

Live Chat Transcript with Dr. Jill Locke

For the second installment this blog series, we’re excited to bring you an interview with Christie Buchovecky. Christie used her 2011 ASF grant to fund her study, Identifying Genetic Modifiers of Rett Syndrome in the MouseRead on to learn more about Christie, her passion for science, and where her work has led her.

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What originally inspired you to begin research in your field?

My cousin was diagnosed with autism when I was in high school. That was really the first time my family or I had heard of the disorder. Always a scientist at heart, I wanted to know more – I wanted to understand how his mind worked and what the future might look like for him and for our family. It didn’t take me long to realize that the Internet was full of misinformation about ASDs (and still is, though I applaud ASF for helping to combat that!). I knew pretty early on that I wanted to improve public understanding of ASDs and help understand what causes them.

In college at the University of Miami, a number of experiences shaped my current path and my outlook on autism and science in general. The single most influential person I met at UM was my first psychology professor, whose class should have been called “How to Think Critically”. One lesson I’d like to share with everyone: The correct answer is frequently “It depends”, meaning that we live in a world of complexity, gray areas, and incomplete and imperfect information – this is something every scientist should keep in mind. Also, for about a year in college, I spent my evenings and weekends working with a non-verbal boy with autism using ABA (applied behavioral analysis) techniques. It was some of the most rewarding and emotionally draining work I’ve ever done and gave me a great deal of respect for therapists and teachers. Lastly, I had many incredible biology professors and research mentors who inspired my love of genetics and encouraged me to pursue a Ph.D.

Baylor College of Medicine, where I am currently working toward my PhD in Molecular and Human Genetics, has a very large community of researchers working on Rett Syndrome, Autism, and other ASDs. Surprisingly, it turned out to be easy for me to decide on a project and mentor; when Dr. Monica Justice described her new research project to the incoming class, I was immediately intrigued.

Can you briefly describe the work that you did with the ASF grant?

The foundation of my work started before I ever joined the lab. That intriguing research project that Dr. Justice told us about in my first weeks of graduate school: She had received funding from the Rett Syndrome Research Trust to perform a mutagenesis screen in a mouse model of Rett Syndrome (Mecp2-null mice). The goal was to find out what biological pathways can be manipulated to improve Rett Syndrome symptoms. After creating random second-site mutations in Mecp2-null mice, she was able to identify mice in which Rett Syndrome symptoms were suppressed. Only then would we identify the mutations that caused symptom suppression and the biological pathways involved. Basically, she was throwing any expectations out the window and letting the health of the mice tell her what avenues to pursue.

All of this meant that I started my thesis project with a family of mice with greatly suppressed symptoms, but no idea what biological pathway I would end up working on. I’m extremely grateful to ASF for understanding the power of this technique and taking a leap of faith with us to identify the mutated gene and understand the involvement of the related pathway. With the help of our collaborators, we identified a mutation in the cholesterol biosynthesis pathway that improved longevity and motor symptoms. Since cholesterol metabolism had never before been implicated in Rett Syndrome, we then spent a lot of time examining that pathway in the Mecp2-null mice. Ultimately, we saw changes both in the brain and the rest of the body.

The nice thing about this finding is that we already have safe and effective ways to alter cholesterol metabolism. In the time since my ASF predoctoral fellowship, we’ve gone on to treat Mecp2-null mice with statins (FDA approved drugs like Lipitor that inhibit cholesterol synthesis), hoping to mimic the effect of our genetic mutation and improve symptoms. This turned out to work quite well and we recently published the whole story in Nature Genetics. There is still a lot to learn about cholesterol metabolism in Rett Syndrome patients. We hope our work will encourage more research into the topic and eventually lead to a treatment that will help improve quality of life for these patients and their families.

Can you describe what you’re doing now?

I’m starting to see the light at the end of the PhD tunnel, so I’m trying to tie things up and begin writing my thesis. I’ve started looking at how altering cholesterol metabolism affects Rett Syndrome symptoms at a neuronal level; this is a logical progression for the project and I’ve always been intrigued by neuroscience. We’re also pursing treatment with additional compounds that alter metabolism in the Mecp2-null mice and are trying to learn more about lipid and glucose metabolism, pathways which are closely related to cholesterol.

What would you like to see studied more in the field of autism research? Do you think there are any areas that are going to be the key to answers in the field for the future?

My graduate experience has instilled in me a sharp awareness that the brain does not exist as a separate entity from the rest of the body. Therefore, I’d like to see more good science being done looking into possible systemic changes observed in ASDs. These could turn out to be metabolic differences, immune system abnormalities, GI symptoms, or something else entirely. To make matters more complicated, it will probably be different in different people – there’s a reason we talk about “autisms”, after all. For example, we know that altered cholesterol biosynthesis plays a huge role in Smith-Lemli-Optiz Syndrome, and that Prader-Willi Syndrome has an endocrine component. Furthermore, we know that treating these aspects of the disease in affected individuals can improve behavior, and it certainly improves quality of life. I anticipate there will be similar (if less pronounced) findings in what we consider non-syndromic autisms.

Part of what makes the autism research community so powerful is the diverse background of the researchers in it and the collaborative efforts they undertake. By and large, however, we are heavy on psychologists, neuroscientists and geneticists and light on physiologists and biochemists. We need to bring more of these people into the field; when we notice a trend in the data and make some incidental finding far afield of our own expertise (because we all have those pages in lab notebooks of interesting things we didn’t have the knowledge base to follow up on), we need to reach out to our colleagues in other disciplines and get them excited about autism research.

Of our 2013 grantees, is there a study that you are most excited about?

Do I have to pick just one?

The work by Dr. Aimee Badeaux and Dr. Yang Shi at Boston Children’s Hospital on the autism brain epigenome is really interesting. I can’t wait to learn more about what they’re planning and what they find out about epigenetic changes in the autistic brain. Epigenetics is a relatively new field and techniques for studying it are constantly evolving. I think this study and others like it will create one of those situations where the more you know, the more there is to learn. As a scientist, I love it when that happens – it’s like finding a whole new set of puzzles to solve!

I’m also really looking forward to seeing how the IGF-1 trial in patients with Phelan McDermid Syndrome (lead by Dr. Alexander Kolevzon at Mount Sinai) turns out. There is a parallel IGF-1 story going on in the Rett Syndrome field that I’ve been following for a while, especially given the role of insulin in metabolism (IGF-1 stands for insulin-like growth factor 1) and its relationship to our research. It’s an interesting and complicated story. Obviously, my fingers are crossed for its safety efficacy, but no matter the outcome, this study has the potential to teach us more about Phelan McDermid Syndrome in the process.

Lastly, is there anything you’d like to share about yourself that our readers may not know or expect?

I love to cook, but am completely incapable of making just a simple meal. Instead, everything is complicated traditional recipes – mostly Italian, as an homage to my heritage, but I also picked up a love of Cuban and Cajun foods in college. On Saturdays I like to hit the farmer’s market, then come home and cook for hours – usually dirtying every pot and pan in my kitchen in the process. Since I also tend to cook for an army, even though it’s just my fiancée and I, I’ve been known to bring containers full of jambalaya, minestrone, or bolognese to my other grad student friends on a whim… Of course we all know a graduate student never says no to free food. I’ve been incredibly lucky in my time here – both to have developed such wonderful friendships and to have had the opportunity to work on such a fascinating project.

Links to Christie Buchovecky’s work can be found below:

A suppressor screen in Mecp2 mutant mice implicates cholesterol metabolism in Rett syndrome

View an interview with Buchovecky on the ASF YouTube channel here

In order for great science to be done, there need to be great scientists. Dr. Matthew Maenner is one of those scientists and a former ASF grantee, as well as the first spotlight in our new series Getting to Know ASF Grantees. In 2010, ASF funded his study, Phenotypic Heterogeneity and Early Identification of ASD in the United States. More information about that study can be found here. Read on to see our Q&A with Dr. Maenner and the work he does in the autism science field.

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What originally inspired you to begin research in your field?

I first learned about autism when I was an undergraduate in college; I worked with children with ASD that had very challenging behaviors.  I really enjoyed spending time with the kids, but I also realized that parents frequently had to make difficult decisions regarding treatments or interventions and they usually had very little information to guide their decisions.  And I remember feeling frustrated when a family would be talked into buying into an unproven—but very expensive—therapy or treatment.  At the time, I didn’t know what epidemiology was, but I thought we should be studying large groups of people to know whether something was effective or not.

Can you describe the work that you did in 2010 with the ASF grant?

Clinical studies have shown certain behavioral “warning signs” to be useful for early ASD diagnosis, and public health campaigns focus on these behaviors to promote earlier ASD identification.  However, there was very little evidence whether these behaviors actually lead to earlier diagnosis in everyday clinical practice. Our study examined whether the behavioral symptoms indicated by research studies were associated with earlier ASD identification in community settings.

We found that children tended to be identified earlier if they were observed to have repetitive motor behaviors, inflexibility in routines, or impairments in nonverbal communication.  In contrast, children that were observed to have problems getting along with peers, holding a conversation, or had idiosyncratic speech were more likely to be identified later, compared to children without these symptoms.   The results also suggest that increasing the intensity of ASD screening practices will likely lead to increased ASD identification at both earlier and later ages if some symptoms are difficult to detect before a child reaches a certain developmental level.

Some scientists focus on clinical studies, while you are an epidemiologist. In what ways are both types of studies important?

Epidemiological studies and clinical studies can offer complementary insights into a particular question. An epidemiological study may observe an association between an exposure and ASD in the population; then, a focused clinical study could examine the hypothesized mechanism in much greater detail. The exchange of ideas can also go in the other direction—epidemiological studies can examine whether a finding from a clinical study “holds up” outside of a laboratory setting. Epidemiological studies can estimate what proportion of all ASD may be attributable to a mechanism identified in a clinical study, or it may indicate that a biological pathway is more complex than initially recognized. Evidence from both clinical and epidemiological studies help us better understand potential ASD causes and treatments, and both kinds of studies can help inform public health policy decisions.

Can you describe what you’re doing now at the CDC?

This summer, I became an Epidemic Intelligence Service (EIS) Officer, so I will be at the CDC for at least the next two years.  It’s an incredible opportunity to learn about how the broader public health system works, how decisions are made, and how to better communicate scientific or public health messages to the public.

What would you like to see studied more in the field of autism research?

I would love to see the development of more high-quality and freely-available screening/diagnostic tools for ASD.  One of the barriers to research and early ASD diagnoses—especially in low-resource settings—is the availability of free instruments and screening tools. This year I created www.disabilitymeasures.org, which we hope becomes a collaborative platform for disseminating diagnostic, screening, and research tools. Based on the reactions we’ve heard from others (like this recent article: http://www.scientificamerican.com/article.cfm?id=a-call-for-open-access-to-autism-diagnostic-tools), we think researchers want their work to be more accessible, and we want to make it easier to accomplish this.

Of our 2013 grantees, is there a study that you are most excited about?

All of the funded studies have the potential to make important contributions.  If I had to choose, I would say I am especially interested in Russell Port’s project with Dr. Roberts. When I was a postdoc at the Waisman Center last year, Dr. Roberts gave a compelling talk on electrophysiological signatures of language impairment in ASD, and I am eager to see where this work leads them.

Lastly, what do you like to do when you’re not working?

As a scientist in the early stages of my career, the line between my hobbies and professional work is quite blurred.  However, my wife grows orchids and I’ve learned a lot from helping her grow and breed them over the past few years.  The amount of diversity is incredible—it is easy to see why Charles Darwin was so interested in them!

Links to Dr. Maenner’s work can be found below:

Phenotypic Heterogeneity of ASD and Its Association with Early Identification

Dr. Maenner Speaking about “Phenotypic Heterogeneity of ASD and Its Association with Early Identification”

Association Between Behavioral Features and Gastrointestinal Problems Among Children with Autism Spectrum Disorder

Potential Effect of DSM-5 Diagnostic Criteria on ASD Prevalence Estimates

By Alison Singer
President, Autism Science Foundation

 

This morning Stuart Spielman of Autism Speaks and I met with key leaders at the American Academy of Pediatrics and representatives from over 20 children’s health advocacy groups to talk about strategies for preventing wandering. A study sponsored by the Autism Science Foundation and a consortium of autism advocacy groups, and published in the journal Pediatrics, showed that 49% of children with autism attempted to wander at least once after age 4, which is four times the rate of unaffected siblings. 53 percent of those who eloped were missing long enough to cause concern. From age 8-11, 27 percent of children with ASD wandered, compared to only 1 percent of unaffected siblings.

In 2012, 25 children with autism died as a result of wandering. By way of comparison, 35 children in the U.S. died of flu and 19 died of whooping cough in 2012.  The AAP supports massive campaigns to prevent those deadly diseases, as it should. Our goal today was to encourage the AAP to increase the resources devoted to implementing and supporting wandering prevention measures as well.

Our efforts around wandering involve both prevention and recovery. Of course we want to prevent as many wandering incidents as possible from happening, so today we talked with AAP members about including information about wandering in what the AAP calls “anticipatory guidance,” which refers to the conversations doctors routinely have with parents at well-child visits to let them know what’s ahead for their children. Only 14 percent of parents of children with autism reported that they were warned about the potential for wandering by their pediatrician (Pediatrics).  We have to do better.  Parents who are aware of the potential for wandering can take precautions to ensure the environment is as safe as possible.  We also talked about providing more training and awareness materials to pediatricians so that they can share the information with their families.

On the recovery side, the group talked about working together to develop a “wandering alert” mechanism,  similar to an AMBER alert, for children with developmental disabilities, addressing the unique needs of this population, including the propensity to head toward water and the fact that our kids might not respond when called by  first responders or other searchers.  When children with autism wander, families can’t access the AMBER alert system because technically the children are not abducted.

Wandering is an issue of life and death. The data, and the newspapers, show that children with autism continue to die from wandering related incidents.  We are committed to doing all we can to reduce wandering and to protect as many children with ASD from wandering-related tragedies as possible.

 

Source:
Occurrence and Family Impact of Elopement in Children With Autism Spectrum Disorder
Connie Anderson,  J. Kiely Law, Amy Daniels, Catherine Rice, David S. Mandell, Louis Hagopian, and Paul A. Law
Pediatrics peds.2012-0762; published ahead of print October 8, 2012,doi:10.1542/peds.2012-0762

By Marcela De Vivo, mother of a child with a severe disability and freelance writer who works with Oltarsh law firms.  She writes on immigration law, health and special education law and inclusion. 

Individuals of all ages and all abilities can benefit from music therapy. Previously, music therapy has been used to support emotional, cognitive and social development in many populations. Music therapy may help to promote wellness by managing stress, enhancing memory, and improving communication.

A 2004 study from the Journal of Music Therapy found that music in interventions used with children and teens with ASD can improve social behaviors, increase focus and attention, increase communication attempts (vocalizations, verbalizations, gestures, and vocabulary), reduce anxiety, and improve body awareness and coordination.

Many additional studies have found that children and adults with autism spectrum disorders (ASD) respond well to music. Often, individuals with autism respond positively to music when little else is able to get their attention, which makes music a potential therapeutic tool.

Music encourages social interactions.

A 2009 study by Kim, Wigram, & Gold found that children with autism showed more emotional expression and social engagement during music therapy sessions than in play sessions without music. These children also responded to the therapist’s requests more frequently during music therapy than in play sessions without music.

Additionally, a skilled therapist can use music with children to increase their social interaction and improve social skills. Passing and sharing instruments, music and movement games, gathering around a central instrument, learning to listen and singing of greetings are just a few of the ways music therapy sessions can increase interaction.

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Music can improve behavior.

In a 2012 study of 41 children with autism over a ten-month period, See found that weekly music therapy sessions seemed to improve overall behavior, with the most improvement seen in inattentive behaviors. Children in this study experienced hour-long sessions of music therapy once a week, and their conduct was monitored against a checklist of target behavior like restlessness, aggression and noisiness. More than half the group improved by one or two points on the scale after the music therapy sessions.

Music can improve communication.

Up to thirty-percent of children with autism are nonverbal, and many low-functioning children have difficulty following verbal commands, and have difficult time with social awareness like understanding body language.

Wan et. al. (2004) found music to improve the mapping of sounds to actions, by connecting the auditory and motor sections of the brain, which may help improve understanding of verbal commands. By pairing music with actions, and with repetitive training, the brain pathways needed to speak can be reinforced and improved.

Music can reduce anxiety.

Children with autism are more sensitive to anxiety than the average child, as they are unable to filter out provoking stimuli. A small four-week study, conducted at the University of Wisconsin La Crosse in 2006, found preliminary success in reducing anxiety in patients with autism through music therapy. After 16 short, 20-minute sessions, during which the treatment patients listened to rhythmic music, the participants who received the therapy appeared to have decreased anxiety-related behaviors.  

Classical music or music with a steady rhythm is thought to be the best for alleviating anxiety in children with autism due to the predictability of the beat.

  

Music is fun.

Perhaps most importantly of all, music therapy is engaging and enjoyable for children with autism. Music therapy is able to bring about changes in social behavior and cognitive ability only through repeated and prolonged sessions—and the best way to keep children working at something is to ensure that they enjoy it. Almost like another form of play, music therapy is something ASD children can engage in without having it feel like work.

Music is an effective way to communicate with and reach children with autism. Music therapy seems to be able to improve social skills, behavior, anxiety and more—and might be the one thing that can reach a child with autism when nothing else will.  

Marcela De Vivo is a writer, music enthusiast and mother of son with special needs. Through music therapy her son, who has severe cerebral palsy, is able to have fun and communicate more effectively with his family. Follow his journey by visiting www.PrayForNathan.org.

 

References:

Kim, J., Wigram, T., & Gold, C. (2009). Emotional, motivational and interpersonal responsiveness of children with autism in improvisational music therapy. Autism, 13(4), 389-409. PMID: 19535468

See, C. M. (2012) The Use of Music and Movement Therapy to Modify Behaviour of Children with Autism. Pertanika J. Soc. Sci. & Hum., 20 ( 4): 1103 – 1116

Wan CY, Bazen L, Baars R, Libenson A, Zipse L, et al. (2011) Auditory-Motor Mapping Training as an Intervention to Facilitate Speech Output in Non-Verbal Children with Autism: A Proof of Concept Study. PLoS ONE 6(9): e25505. doi:10.1371/journal.pone.0025505

Whipple J. (2004). Music in intervention for children and adolescents with autism: a meta-analysis. Journal of Music Therapy. 41(2):90-106. PubMed PMID: 15307805.

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