By Jerri Sparks Kaiser

Photo: jshj

A new study by researchers at Vanderbilt University about giving melatonin to autistic children to help them sleep was published a few weeks ago and it deserves some attention.  Researchers gave 1 mg to 3 mg of melatonin to children with autism ages 3-9 years and noted improved sleep onset.  They are now trying to conduct larger scale studies.

Sleep difficulties have always been a problem for my son Jared.  One of the first things I noticed about his development was that he didn’t sleep very many hours in a row.  In fact, for the first 4 years he only slept 4 ½ hours at a time and after that it was still just 6 hours.  I don’t recall when he finally began sleeping at least 8 hours at a stretch (perhaps it was around age 7) but I know that it didn’t happen without medications prescribed by doctors.  Sleep deprivation was making it difficult for me and my spouse to conduct our daily lives and we resorted to sleeping in shifts. It is estimated that 50-80% of those with ASD are affected by insomnia and that impacts families as well.

I remember sleepily waiting in the elevator at UCLA Medical Center to take Jared to an early pediatrician appointment. He must have been around 10 weeks old.  Beside me in the elevator was another couple with a young infant like my son and we exchanged pleasantries about each baby’s cuteness and then I asked them how they were coping with the lack of sleep.  They smiled at each other and said “She’s already sleeping six hours in a row…”  It was the first of many moments where I sought solace in parents going through the same thing I was going through only to have that hope – that need – dashed.[

Since that time my son has gradually learned to sleep a lot longer, but his sleep is still shallow at times.  The slightest noise can wake him and then he’s up for the day no matter how little sleep he had before he was awakened.  When he is particularly excited about something that’s happening the next day he can’t sleep and will stay awake for 24 hours or more until the anticipated event has occurred.  We are searching for something to help him with this latest symptom, not only for his own health but also for the sake of our family.  Sleep disturbance affects everyone, not just the person experiencing it.  I never thought I’d still be going through sleep deprivation 14 years later.

We did try melatonin for Jared when he was much younger.  I remember it working but as fate would have it, other symptoms, such as running away and behavioral outbursts, took precedence over his sleep supplement and so we had to remove melatonin from his treatment.  The new medications he was placed on took care of his sleep issue until just recently.  This new study makes me wonder if perhaps we could introduce melatonin into his treatment once again and I am going to call his doctor about this.

Recently Jared asked me why he couldn’t sleep.  This is an emerging behavior because Jared is just now beginning to let us into his inner thoughts.  It’s very exciting!  The fact that he’s wondering about his own behaviors is encouraging to me.  I didn’t know what to tell him so I said the only thing a mother can say when she doesn’t have the answer yet: “I don’t know honey, but I’m going to find out and make it all better.”  And I will, someday, somehow.

The awards cover up to $1,000 of expenses to be used for registration, travel, accommodations, meals and other directly related expenses, including childcare or special accommodations to enable individuals with autism to participate. Grantees are responsible for obtaining international travel documents.

Applications must be received by February 29, 2012.

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 program for the third year in a row and to give back to the autism stakeholder community in a research-focused way,” said Alison Singer, president of the Autism Science Foundation.

“These scholarships are a wonderful opportunity to bring more stakeholders to IMFAR and enhance discussion and interactions among all key constituencies”, said Dr. Helen Tager-Flusberg, President of INSAR and Professor of Psychology, Anatomy & Neurobiology and Pediatrics, Boston University.

For details on how to apply visit the Apply for IMFAR Travel Grant page on our website.

Dr. Karen Pierce is an Assistant Professor in the Department of Neurosciences at the University of California San Diego, and the Director of Clinical and Functional Brain Imaging Research at the UCSD Autism Center of Excellence (ACE).

Jonathan Carter spoke with Dr. Pierce about her work. 

You’ve developed an early detection technique named the 1-Year Well-Baby Check-Up Approach. Can you describe how you developed the approach?

For me, the motivation was twofold and contained both clinical and research roots. First, I wanted to detect autism early to get kids into treatment as soon as possible. The second motivation was purely scientific.  Autism is a neurobiological disorder, and if we want to make the big discoveries about what’s going on, we have to study the disorder while the symptoms are unfolding.  So I needed to figure out a way to study autism as early as possible.

But then we are left with a problem: How do you study autism during the first year or two of life if a diagnosis doesn’t come until 2, 3 or even 4? So I decided the best way to address this issue is to implement a really simple, broadband screen.

Obviously symptoms of autism aren’t glaring over the first year of life. If they were, people would be diagnosing autism at that year of age. But, there are some signs that I thought would be caught by broadband screens. There is a really excellent broadband screen developed by Amy Wetherby and Barry Prizant, called the CSBS DP IT Checklist, but the screen had never been used as standard of care in a doctor’s office before. I started with my own pediatrician and asked her if she could spend a couple extra minutes during the one-year exam giving this screen to all of her patients. She tried it and it worked well, leading the other three doctors in her practice to do it. It all started with just four pediatricians. And it worked really well with those four, so I went out and started taking with other pediatricians around San Diego. By the time I hit 30 pediatricians word had spread far enough that I began to have pediatricians calling me asking to get into our program.   Today over 170 pediatricians in San Diego are screening for autism and other delays at the 1-year check up using my program.

How does the program work?

It’s quite simple: I go into the pediatrician’s office and tell them about the importance of early screening in autism. I then show and teach the staff the screening tool and how to score it.

The reason that the screen works is that it has to be done at the actual checkup. The mother or father fills out the CSBS, which is fairly short, just one page. She fills it out while in the waiting room and hands it off to the receptionist, who then hands it off to the nurse or medical assistant who grades it right then and there. This allows the doctor to look at it quickly and reveals whether the child is at risk of having delays. The score allows the doctor to probe further during the one-year exam. If the baby is showing a delay they are then referred to UCSD or other qualified location. Once they get here, we do a full, in-depth evaluation.  We do the ADOS and the Mullen Scales of Early Learning to look for cognitive delays. We perform several experimental assessments such as my “geometric preference test for autism” that evaluates eye gaze patterns. We also take a blood sample to look for blood-based autism markers, and then we also do a free MRI scan to examine brain development. 

Can you go over a few of the questions that are on the screen?

The first couple of questions probe for social attention behaviors. They are in the screen to identify joint attention behaviors and joint attention precursors.

There are also questions about gestures. For example: Does your child wave or point?

Dr. Pierce's 1-Year Well-Baby Check-Up Approach incorporates questions covering attentional behaviors, gestures and language.

There are questions about language. Does your child string words together? The last part of the test addresses symbolic word and object use. How many of the following objects and words does your child use appropriately?

Because it is so simple, it appears that the screen could be administered by parents themselves without doctor oversight. Is that something your team have discussed or thought about?

We’ve definitely thought about it, but my only minor hesitation is that there is around a 25% false positive rate. It is good to be followed up immediately with a professional. If your baby doesn’t score very well there could be a lot of emotion. At this point I think its optimal that the screen is done in a professional’s office where someone can talk with the parent and then get a schedule for an evaluation as quickly as possible.

So you touched upon a 25% “false positive” rate [which means 25% of children screened have failed the screen who, after further testing, are not found to have developmental delays]. Give the nature of the test; is that number really a problem? Do you see any downside to having false positives?

I do not think the false positive rate is a significant problem.  From a research perspective, the children who end up participating serve as great match controls for the kids who do have a true delay. Also,  a lot of parents are curious about their child’s development so they take a couple of hours to have their child observed with a professional. When they get the results that their child is actually doing above average, they are relieved and are very happy to continue to participate. By using the approach, we evaluate kids as early as 12 months, and get them into treatment as soon as possible, with the average being 17 months.  I think the benefit of our approach greatly outweighs the minor inconvenience of a few hours of testing for parents who have children who are developing typically.

Do you consider this test a replacement of the ADOS?

Definitely not.  The ADOS is the tool we use once the babies arrive at our Center to help us decide whether they have language delays, cognitive delays, global development delays or whether they have autism.  The ADOS is a complement to what is determined on our test.  The CSBS that we use for our research is a broadband screening tool; it is not an autism test like ADOS.  It just happens that 20% of the kids who fail our approach end up with an Autism Spectrum Disorder. And that’s what makes it great. You’re helping all kinds of children. You’re also catching kids that have a language delay who can benefit from therapy, in addition to autism.

[The screen] is a very a non-threatening tool. It’s a benign positive screen that is not written in a way that can cause distress. That’s why I think it’s worked so well.

 ”That’s how things work in life. If it works well and is really straightforward and easy to implement, then that technique is your best bet for success.” – Dr. Karen Pierce

What are the next steps for the approach?

I want to increase the precision of determining autism specifically in the pediatrician’s office. Through complementary research to the check-up approach, I have found that Babies that end up with autism show preference for geometric patterns. (Pierce, K., Conant, D., Hazin, R., Desmond, J., & Stoner, R. (2011).  Preference for geometric patterns early in life as a risk factor for autism.  Archives of General Psychiatry.  68, 101-109). If you show children with autism a movie with geometric patterns and social images playing, only the babies with autism will watch the movies with geometric autism. The accuracy, so far, is 100%.

Now what I’m doing is trying to figure out a way to get that geometric preference test into the doctor’s office so that when a baby fails a screening tool in the doctor’s office, they can use this tool. I’m trying to give doctors the tools and mechanisms to narrow down the diagnosis. And this will get ASD children the early support services they need.

We’re really fast here in San Diego, but I want to change clinical care throughout the United States, not just in San Diego, so I try to think of systems that can be implemented everywhere. So my next steps are thinking of what I can give the pediatrician to increase the accuracy and certainty that the babies that they are looking at have some sort of delay.

What advice do you have for parents of children with autism who have aged out of the 1-year check-up?

Age doesn’t matter. At any age that you become aware that your child has needs and can benefit from specialized treatment, then it’s imperative to jump in and develop a team at your child’s school and with other people who are knowledgeable in the area. It is never too late. Just because we are trying to detect and treat 12-month olds to 24-month olds doesn’t mean it isn’t equally important to protect and help kids who are ages 2-7. And I think sometimes those kids get a little left out. Older kids with autism can make really important gains with treatment.

ASF welcomes Jerri Sparks Kaiser as our newest Science Writer. Jerri, a parent of four children, one of whom has autism, will blog for ASF from a parent’s perspective about the latest autism research. A former Congressional Press Secretary, Jerri is an experienced science writer and has written specifically about autism for many years. Before her life in PR, she was a trained researcher having earned her B.A. in Psychology at UCLA. She currently lives with her family in New York.

By Jerri Sparks Kaiser

A promising new study about blinking rates in autistic children caught my attention this week.  As the mother of an autistic son and three other typically developing children, I can attest to the differences in their social behavior but it had never occurred to me to measure and compare their blinking rates.

The new study, which appears in the Proceedings of the National Academy of Sciences, found that when autistic individuals watch a video of a boy and girl playing they decrease their blinking rate when watching the physical movements whereas typically developing individuals did just the opposite – they decreased their blinking rate while watching the emotional content.  That is, typically developing children are intrigued by emotional interactions (since decreased blinking rate indicates interest) and autistic individuals show interest in the physical interactions.

This makes perfect sense to me.  When my son was an infant I was studying psychology at UCLA and I kept notes of his daily life from conception until he was about 3 ½ years old.

One thing I noted was how when anyone was upset he watched their mouths move instead of their entire face.  He rarely looked at their eyes.  It was as if he couldn’t hear the conversation so he found the silent movements of their mouths humorous.  He would stare intently at people’s mouths and then begin laughing.  Later on he would become excited by this and tip forward on his toes, waving his arms excitedly as he watched.

I remember thinking he might be deaf so I had his hearing checked but it was fine.  In fact, Jared can hear very well, from distant trains to the fluorescent bulbs in the kitchen.  For some reason though he compartmentalizes his sensory input, instead of processing the whole he catches the visual, then the audio.  He would watch sand fall in front of his face and ignore my pleas to come out of the sandbox.  His visual system has always over rode his auditory, so much so that I began covering his eyes if I wanted him to pay attention to what I was saying.

This study could lead to much earlier diagnosis and treatment of autism.  Infants have gaze patterns at birth, an early indicator of bonding.  If it could be found that children as young as 6 months of age demonstrate particular blinking rates or patterns then it could indicate which children are good candidates for early intervention services.  This could improve overall long-term outcomes and gives the term “early intervention” a much more powerful meaning.

My son did not receive services until he was 3 years old because I couldn’t get a diagnosis before that, even though I knew as his mother that something was not right.  There simply weren’t relative tests for any earlier periods of development 14 years ago when my son was born.

I did, however, instinctively model emotional interactions for my son in a heightened way.  Because I knew he acted deaf I often overplayed when I was hurt so as to elicit a nurturing response from him.  When that didn’t work at first I intensified my reactions to when he was hurt.  Eventually it worked and today my son is very empathetic when others are hurt or upset.  He needs to “fix” them.  While it may not be the same kind of empathy as typically developing people exhibit or even feel, his nurturing instinct has been developed and is intact.  The earlier parents know to utilize tools such as this the better the future is for their children.

Dr. Warren Jones

A recent study found that eye blinking may be an early cue for autism diagnosis (abstract). The Marcus Autism Center at Emory University, with help from Dr. Warren Jones, the Director of Research at the Marcus Autism Center, and Dr. Sarah Shultz, an Emory graduate student and the first author on the PNAS-published paper, have written a blog post for ASF which summarizes the study’s findings. 

One of the central goals in autism research is to better the needs and experiences of individual children on the autism spectrum, even and especially children who may not be able to easily communicate those experiences.  Researchers hope that doing so will provide an inroad into helping those children and also into understanding the condition as a whole.  That goal would initially appear to have very little to do with eye blinking. But researchers at the Marcus Autism Center at Emory University, together with a graduate student in Psychology at Yale University, have discovered a new way to use this information to actually measure how engaged people are with what they’re watching.  And they can even use this technique to learn from children who, like those with autism, have difficulties communicating their interests to others.  The results are reported in the December 12^th online Early Edition of the Proceedings of the National Academy of Sciences.

The new method relies on measuring the precise timing of when people blink, and when they don’t.  The research reveals that people unconsciously inhibit their blinking at precise moments.  Why would people blink at some moments but not at others?  “When we blink, we lose visual information,“ says Sarah Shultz, a graduate student in the Psychology Department at Yale University.  “Our eyelids close.  We’re not conscious of the timing of our blinks, but they still impact the visual information we take in.” While measuring what 2-year-olds look at when watching videos of other children playing, Shultz made an interesting observation: she noticed that the children blinked less while the videos were playing than they did before or after the videos.  This led Shultz and her colleagues at the Marcus Autism Center, Ami Klin and Warren Jones, to wonder whether the rate of blinking might go down or up on a moment-to-moment basis, depending on whether viewers perceived a scene to be more or less important. The researchers tested the hypothesis by letting 93 two-year-old children watch a video.  The video showed a simple scene of a boy and girl playing together.  About half the children watching had Autism Spectrum Disorders.  The researchers measured when children blinked and when they didn’t, and the results were surprising.  “Typically-developing 2-year-olds inhibited their blinking at the same moments in the video.  And they were more likely to inhibit their blinking when watching more emotional moments, and when looking at the faces of onscreen characters,” said Shultz.  Toddlers with autism, however, were more likely to inhibit their blinking when looking at physical objects, and at physical objects in motion. Toddlers with autism also inhibited their blinking after actions happened, whereas typically-developing toddlers inhibited their blinking early.  This suggests that typically-developing toddlers were anticipating the unfolding of the social interactions they watched, while toddlers with ASD were reacting, after the fact, to physical actions that had already happened.

“While we knew about young children with autism paying less attention to social cues and information, this is a new insight into understanding what kids engage with and what they perceive to be most important,” said Jones.  “Even if they’re looking at the same thing, different children may perceive it differently.  For a two-year-old with language delays, or even an 8 or 10 year-old who struggles to communicate, this kind of measure can tell us about that child’s experience and, with that information, hopefully improve our efforts to help that child learn.” This method is now being applied to investigate the experiences of other children with ASD.  When children with ASD look at different kinds of visual information, or at faces and eyes and information that might be useful when trying to understand other people’s actions, are children with ASD actually engaged with those stimuli to the same extent as their typical peers?  Do children with ASD perceive those stimuli and their adaptive value in the same way?  Because engagement with socially relevant stimuli may be critical for other aspects of neural and behavioral development—such as the acquisition of speech and language skills, and the specialization of brain function—this is a critical question.  And the timing of when children blink may hold new answers.

Ewan, an adult with autism, is an employee at EV Gifts

Ewan, 23, graduated from Chapel Hill High School and immediately faced the daunting task of finding employment in our country’s tough job market. Like all recent grads, Ewan was forced to deal with the uncertainty of employment. But Ewan is no ordinary high school grad. Ewan has Autism.

For 17 year, Ewan benefited from the structure of the special education classrooms of Chapel Hill City School.  Once he graduated, his family realized there was nothing else Ewan was entitled to. He would face the job search like his peers – while bearing the extra burden of his developmental disability.

Ewan volunteered at the University Library, making copies and completing small tasks. His family hoped the library would see the value that Ewan added to their daily work environment and agree to hire him. Months passed with no success.

Then he heard of Extraordinary Ventures, a nonprofit that was exclusively interviewing adults with developmental disabilities. Ewan was hired.

In response to the increasing population of autistic adults, a group of parents in Chapel Hill took charge by taking a non-traditional approach. They set out to start an organization that would start small businesses to employ adults with autism and other developmental disabilities. Extraordinary Ventures was born.

I run one of EV’s businesses — EV Gifts. It’s a product-based business that offers gift items. Currently, we manufacture food jars, scented candles and bath salts. We also create custom gifts for businesses’ customer appreciation programs and for families for holidays and weddings. Our scents and designs are high quality, but our main purpose is employment.

My employees, who “run the spectrum,” work in every part of the manufacturing and ordering process. We recognize that each employee brings a different skill set to the table and we work to provide the kind of environment that allows them to use their skills in a real way. For example, some complete more repetitive tasks, like manufacturing and packaging, while our others work on less structured tasks, like decorating and order processing.

Recently, the Autism Science Foundation ordered EV Gifts, oatmeal jars, as holiday thank you gifts for their key volunteers. We were very excited to have their business and their order was our largest to date. The best thing about large orders isn’t the revenue, but the employment.  Four of my employees, all with autism, were fully employed for two weeks. Our employees enjoy working because it gives them a sense of purpose and pride in their commitment. Like any adult, a balanced life has a work component. The ASF order provided that work and purpose to the EV Gifts employees, including Ewan.

Ewan was the first hire of my career and the first employee for EV Gifts. EV was his first paying job and he was the first employee to work on the ASF order.  ASF’s order provided Ewan with a paying job and the sense of purpose that is so important for every adult. We hope to keep the ball rolling and continue to provide these adults with a safe working environment for them to utilize their skills in a meaningful way.

Interested in purchasing an EV Gift? Go to website evnc.org/gifts or to place a bulk or custom order contact Van at van@evnc.org.

So for this contest, post your own snow angel on Instagram.  The photo can show you, your kids, your friends—a family of angels. Be creative!  You don’t even need to be in the snow – make a great sand, grass, toy, dirt or leaf angel. Whatever it is we just want to see you spread your wings!

Download the free Instagram app here.

The top submission – as selected by the judges (ASF’s Communications Manager Dawn Crawford & PostalPix’s Co-Founder Michael Sarlitt)  will win a $25 gift certificate from contest sponsor PostalPix and three runners up will receive a ASF polar fleece scarf.

Sponsor Postalpix is an iPhone app that lets you order prints of your iPhone photos. Their prints and aluminum panels come in square sizes that are perfect for IG pics. Our thanks to PostalPix for sponsoring this contest!

We can’t wait to see your snow angel pictures! Get a sneak peek of the entries here.

Contest Rules:

**Please read all the contest rules carefully**

• All photos must be submitted via the Instagram app
• Theme: Snow Angels – Can be made in snow, sand, dirt, leaves, whatever
• Tag With: #ASF_SnowAngel & @autismsciencefd
• Only 1 photo per person – Want to enter more than one photo? Make a $5 donation per photo to ASF at Recipe4Hope.org
• Old photos are allowed
• Original photos only!
• Deadline: Tuesday, December 13 at 5 p.m. EST
• Winners selected by ASF’s Communications Manager Dawn Crawford & PostalPix’s Co-Founder Michael Sarlitt
• Winners announced Wednesday, December 14
• 4 Winners:
  • Grand Prize: $25 Gift Certificate to PostalPix
  • 3 Runners Up: Fleece ASF Scarf

ASF has funded just under half a million dollars in pre- and post-doctoral student research in the past two years. Ongoing donor support for this program through the Recipe4Hope campaign is critical. The pre- and post-doctoral fellowships encourage the brightest young scientists to devote their careers to autism research. These research grants are already having a real impact on the field and we need your support to continue these discoveries.

We all know that autism research takes a lot of people, working together, to find the answers. We need the discoveries of the brightest scientists. We need the knowledge and experience of parents. We need donations to fund this critical research.  All these efforts snowball into lasting hope for children, teens and adults. You can be part of this avalanche of funding by making a donation to this special campaign.

At the center of this campaign is a heartwarming video – Youtube.com/user/AutismScienceFdn – showcasing the Neiman family of Colorado building a snowman and playing together in the snow.  We know you will love watching this family work together to achieve their goal,   just as we must all work together to achieve ours.

After the shoot, we talked to Laura Neiman about why she volunteered for this project. “I’m so thankful that my family was a part of this video,” she said. “I hope that our participation will inspire others to give to this worthy cause.

This fundraising campaign will take place exclusively online through December 31 and there are lots of ways to get involved beyond making a donation. You can help spread the hope by posting information about the campaign on your Facebook page or even sending us photos of your family making snow angels or having fun together at other outdoor activities. Check out this great list of ways to get involved in this campaign – Spread Hope.

As a special bonus, anyone who donates $100 or more will receive a cozy fleece ASF scarf (as seen on our adorable snowman). It’s our way of sharing the warmth.

You can also create your own fundraising page to raise money for autism research this holiday season.  It’s easy and free to set-up a personal page. Click here to set up a page – if you get stuck or have questions email us at dcrawford@autismsciencefoundation.org.

From the ASF Team to you – happy holidays! Thank you for your ongoing support. Together we can build a lasting Recipe4Hope!