The Centers for Disease Control and Prevention (CDC) today reported that 1 in 68 children is diagnosed with an autism spectrum disorder. This new estimate is roughly 30 percent higher than previous estimates reported in 2012 of 1 in 88 children. The number of children identified with ASD ranged from 1 in 175 children in Alabama to 1 in 45 children in New Jersey.

For the full press release, please visit our website.

Mike Morse

10:15pm. It’s Friday night, and I have dozed off in a hallway of the Psychology Department at NYU, sitting in a chair across from a sign that says “Sleep Study in Progress – Please Be Quiet!” Behind the sign there is a little room where several Thomas the Tank Engine sheets and pillows mask its position as the waiting room in a research lab. I had just emailed a friend of mine to say that if all goes well, we’ll be finished by midnight.

In the Thomas the Tank Engine room, Dimitra is currently trying to get our son Yanni to sleep. We had just read the ironic news via text message that Yanni’s identical twin brother was sound asleep back at home. Vasili has already been in the Thomas the Tank Engine sleep room twice, and twice he failed to sleep deeply enough for the task that lies ahead for Yanni. That task is to put on earplugs, headphones, various other monitoring wires, turn on his back, and be perfectly still (ideally sound asleep) for up to 45 minutes while inside a noisy MRI machine.

Unlike many autistic children, Yanni and Vasili tend to be good sleepers. What makes me nervous about their ability to sleep in the machine is not the noise or the wires or the strange environment, but the need to lie on their backs. I’m not sure they can do this for five minutes without straining to roll over. I know this because for the past three weeks, we have been training Yanni for the big night. Every night after he goes to sleep, we have played an hour-long CD featuring the loud bleeps and grinding noises of the MRI. We have been making him increasingly uncomfortable for the experience, first with little putty earplugs, then with a cap, and finally with headphones. Yanni usually sleeps through the cacophony, but he almost always winds up on his stomach.

We have signed both of our sons into a study called “Functional Brain Imaging of Low Frequency Oscillations: Relation to Attention and Sensory Integration.” By comparing the brains of autistic children and the brains of neurotypical children, the researchers hope to understand more about the disability. We are excited to be part of this, not just because we are helping to contribute to knowledge, but because we get a thorough evaluation of the boys (not normally covered by insurance), which can be useful when negotiating with school boards.

Our bodies have different ways of marking the passage of time. Breathing and the heartbeat are the most familiar, but there are other ways too. There is also a rhythm to the activity in our brains, which fluctuates on a cycle of between 15 and 30 seconds in duration. I have always found it easier to concentrate while listening to music, and I wonder if music helps regulate this natural neurological rhythm. Our sons, like many autistic children, have difficulty staying focused on non-repetitive activities, and they are highly motivated by music. Sometimes, when they cry from distress, we can put them at ease simply by turning on the radio. The researchers hope to find out if this cycle looks different in the brains of autistic children and children with attention deficit hyperactivity disorder (ADHD). I note that it’s going to be a long night, and I’m helping to pass the time by thinking of a song I recently downloaded.

10:30pm. Dimitra peeks out the door and wakes me up to tell me that Yanni seems to be deeply asleep. We agree that the best way to test this is to call the research scientists in so that they can insert his earplugs. After the first earplug goes in, Yanni rolls over on his own, paving the way for the second earplug. He seems to be pretty out of it. We’re going to make the attempt!

Before we move Yanni, we have to take him out of his sleep-sack. Many babies sleep in these, which are essentially blankets that fit over a child’s shoulders with a zip down the middle. The zipper is metallic, and no metal is allowed in the MRI room. (Earlier, Dimitra and I had to answer a long list of low-probability questions, like whether we have worked as welders or had eye injuries involving metal.) We found a Canadian company that makes sleep-sacks for older children, since there is no way Yanni and Vasili would be able to stay under normal sheets and blankets overnight. The three of us then had to undergo a metal detector wand-examination, like the one you get after you set off the main metal detector in the airport. We passed.

We transfer Yanni to a bed-on-wheels and bring him through what I will call the control room, which overlooks the MRI room, and onward to the MRI itself. Four NYU scientists then grab the sheet under Yanni, count to three, and hoist him onto the table.

At this point, Yanni opens his eyes briefly, but still seems to be asleep. We wait two minutes, five minutes. Then the scientists start fussing around and prepare him for the scan.

11:07pm. It feels like it’s been forever since we brought Yanni into the scanning room. I’m worried that it’s taking too long, that he’s already been on his back too long, that there’s no way he will stay asleep in the scanner. Finally it’s time to try. I feel relief and excitement. After two failures with Vasili, maybe we will actually be out by midnight. Dimitra goes into the control room, and they start to slide Yanni into the scanner. Then, he opens his eyes again. We wait again. The eyes close. Then he stretches. Finally, Yanni starts grabbing at the kind of cage that surrounds his head. There’s no kidding ourselves. He’s awake.

I run to him as the researchers free him from all the wires and headphones. Yanni reaches to me and starts giggling. We go back into the Thomas the Tank Engine room and start again. This time, I bring the chair into the room and fall asleep on it there.

1:30am. We’re back in the MRI room. Yanni is asleep. This time, it’s going faster and smoother. He stays asleep as he goes into the scan. Dimitra and I move to the control room. Anyone who is a parent has the experience of wishing their kids asleep, worried about every little sign that the child might wake up. We experience the hi-tech version of this. A small camera in the MRI machine zooms in on a mirror on the head-cage that surrounds Yanni, reflecting an image of his eye.

Dimitra and I are looking at an extreme close-up of Yanni’s eye. Sure enough, it opens. Yanni doesn’t even look around. He’s probably still asleep. We watch as he slowly blinks until the eye closes again. Collective sigh of relief. Then it opens again, then it closes. We wait. Ok, it’s a go!

The MRI starts up, and Yanni is startled. Will he be able to go back to sleep this time? Our question is quickly answered by a loud and disconcerting alarm. After a microsecond of distress, I realize that this alarm simply means that Yanni is awake and the scan is aborted. I run in again and the researchers remove the head-cage that Yanni is now grasping for.

Yanni mutters something that the lead scientist strains to interpret. Did he say, “I don’t want it!” she asks me. No, I say. Yanni doesn’t have words. In point of fact, he sometimes does say words. Every

few days, he will whisper “cup” if he wants something to drink. He says “Daddy” but only when a therapist shows him pictures of me, not in reference to the actual me. The only time he strings two words together is when he presses his chin against Dimitra’s or my check, or nuzzles us behind the ear, and says “oooh, I love!” It’s incredibly endearing. But even then, I don’t think he knows that this is two words. There is no way he just said, “I don’t want it!” But it is clear he wants out.

We go back to the Thomas room. I abandon the metal chair and decide to sleep at the end of the couch where Dimitra is trying for the third time to get Yanni to sleep. Then something unexpected happens. I hear a door opening. But the front door is locked, and the scientists only come in from the control room after knocking. Someone has a key to the front door.

The door opens just a crack, and my first thought is that it’s an evil henchman from a Bond movie. I see a very tall man with wild, stringy hair, and a pockmarked, unsmiling face. He’s trying to make us out in the darkness. It occurs to me that my wallet, mobile phone, wedding ring, and whatever other valuables are between this figure and us. The door quickly closes, and this will remain a mystery for a little while. What if he opened the door when we weren’t there?

3:43am. This time the scientists knock and come in. They ask whether we are ready yet. As a matter of fact, we are. Dimitra tells them that Yanni is still wearing his earplugs from the last attempt. But when we check, we notice that there is some putty entangled on Yanni’s hair. We try to pull it off, but it won’t move. There’s a real danger we’re going to wake him up over this, so we leave it there. Then we realize that he is already wearing two earplugs, which means that we didn’t notice that this spare one was on his hair the last time. So, we leave it there again. This time, I carry Yanni straight to the scanner, forgetting the bed-on-wheels. Within about a minute, he’s in, and the scan begins. One of the scientists mutters under her breath that this is the way it’s supposed to work.

We’re all in the control room except for the lead scientist, who has her own set of headphones and is with Yanni in case he wakes up. We zoom in on his eye, and this time it’s not moving. For there to be enough data, Yannni needs to be in the scanner for at least eight minutes. One of the scientists signals (through the glass window) as each minute ticks by. Dimitra remains pessimistic. But Yanni blows through eight minutes.

It occurs to me that Yanni is like an explorer. We prepare him, suit him up and send him down a narrow corridor for exploration. Only he can do this. But what he’s exploring is not some cave but the inside of his own head. On a monitor, we can see his entire brain structure. It reminds me of the ultrasounds we saw when he was in the womb. We even get a few printouts for our records or just as keepsakes. Unlike regular explorers, Yanni has no awareness of what he’s doing. He’ll never know that we were looking into the architecture of his brain or that he is contributing to our understanding of what makes autistic people different. For that matter, Yanni doesn’t even know what autism is. He’s just a happy little 6-year-old who is not getting a normal night sleep at the moment.

Yanni stays in the machine for a full 45 minutes. They get every kind of scan they want. By a margin of five minutes we break the record for the latest night the researchers have had to endure in this project. Most kids finish by 1am or so, 3am at the latest. Somehow, we feel we are always the exception!

When it’s over, Yanni is still asleep. He could have done more, if there were anything more to scan. We get him dressed, finally get the three earplugs off of him and start to head home. On the way out, I see that our evil henchman is in fact the security guard. He probably just wondered if we were still there. We get in the car and make the hour drive to our home in the suburbs. On the way, I feel a kind of closure by playing the song that has been echoing in my head all night, and it makes the drive easier. At last, we are home and I get some satisfaction in getting into bed just before 6am, as if that represents some kind of milestone. I set the alarm for 8:15am and go to sleep.

Funds will enable parents, teachers, students,
individuals with autism and other stakeholders to
attend leading autism research conference

(January 7, 2014—New York, NY)–The Autism Science Foundation, a not-for-profit organization dedicated to supporting and funding autism research, today announced that it is offering a limited number of grants to parents of children with autism, individuals with autism, and other stakeholders to support attendance at the International Meeting for Autism Research (IMFAR), to be held in Atlanta, Georgia from May 14-17, 2014. Awards of up to $1000 can be used to cover registration, travel, accommodations, meals and other directly related expenses, including childcare or special accommodations to enable individuals with autism to participate.

IMFAR is an annual scientific meeting, convened each spring, to promote, exchange and disseminate the latest scientific findings in autism research and to stimulate research progress in understanding the nature, causes, and treatments for autism spectrum disorders. IMFAR is the annual meeting of the International Society for Autism Research (INSAR).

“We are thrilled to be able to offer this opportunity for a fourth year, and to give back to the autism stakeholder community in a research-focused way,” said Alison Singer, president of the Autism Science Foundation.

“Participating in IMFAR with an ASF travel grant in 2012 was an eye opening experience” said Marjorie Madfis, mother of a daughter with autism and founder of Yes She Can, an organization that helps girls with autism develop employment skills.  “I was particularly impressed with the research examining the unique needs of girls and women, and on development of social skills, and I incorporated some of this research into the work we do at Yes She Can.”

To apply for a travel grant, send a letter or video to grants@autismsciencefoundation.org describing why you want to attend IMFAR and explaining how you would share what you learn there with the broader autism community. Letters should be sent as Microsoft Word documents of no more than 2 double-spaced pages, 12-point type, “Arial” font, with standard margins. In the subject line please write: “IMFAR Travel Grant Application”.  Videos should be two minutes or less and should be emailed to the same address as above with the same subject line. Letters & videos must be received by February 21, 2014. Recipients will be announced in March.  Past recipients have included individuals with autism, parents of children with autism, siblings, outreach coordinators at autism research centers, special education teachers, graduate and undergraduate students, journalists, and others.  Additional application information is available at http://www.autismsciencefoundation.org/what-we-fund/apply-for-IMFAR-travel-grant

The Autism Science Foundation (ASF) is a 501(c)(3) public charity whose mission is to support autism research by providing funding to those who conduct, facilitate, publicize and disseminate autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

The International Society for Autism Research (INSAR) is a scientific and professional organization devoted to advancing knowledge about autism spectrum disorders. INSAR was created in 2001. The society runs the annual scientific meeting – the International Meeting for Autism Research (IMFAR) – and publishes the research journal “Autism Research”.


Contact Information:
Meredith Gilmer
Community Relations Manager
Autism Science Foundation
28 West 39th Street, #502
New York, NY 10018

Editors Matthew Siegel, MD and Bryan King, MD recently released a new publication,  Acute Management of Autism Spectrum Disorders, An Issue of Child and Adolescent Psychiatric Clinics of North America, 1st Edition. The “spectrum” in this disorder is Autistic Disorder, Asperger Syndrome, and Pervasive Developmental Disorder. This issue specifically addresses acute management of the extreme behaviors that accompany this disorder spectrum: extreme behaviors, complete lack of communication, inability to learn or express language, etc, and covers in-hospital or residential therapies as well as in-home family involvement. Medical treatment for this disorder is the main focus of discussion in topics such as: Emotional Regulation: Concepts and Practice in ASD; Specialized Inpatient Treatment of ASD; Residential Treatment of Severe Behavioral Disturbance in ASD; Treatment of ASD in General Child Psychiatry Units; Behavioral Approaches to Acute Problems; Communication Strategies for Behavioral Challenges in ASD, along with topics covering Psychiatric Assessment of Acute Presentations in ASD; Sensory Regulation and its Relationship to Acute Problems in ASD; Family Dysfunction, Assessment and Treatment in the context of Severe Behavioral Disturbance in ASD; and Self Injurious Behavior in ASD.

More information, including how to purchase the book, can be found here.

Yesterday, in a publication in Nature, scientists showed that it is possible to identify markers of autism in the first 6 months of life, much before children begin to show symptoms. In this study, these markers predicted both diagnosis and level of disability 2 years later when the children were evaluated by expert clinicians. The scientists used eye-tracking technology to measure the way babies visually engage with others. If these results are replicated in larger samples, these procedures might in the future empower primary care physicians to screen for autism as part of routine well-baby check ups. Equal energy and resources will then have to be invested in improving access to early treatment so that children are afforded the opportunity to fulfill their full potential.

For the full article from Nature, click here.

For the New York Times article, Baby’s Gaze May Signal Autism, a Study Finds, click here.

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.


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