By Alycia Halladay, PhD
ASF Chief Science Officer

If you missed it, on Tuesday the workgroup on Under-Recognized Co-Occurring Conditions in ASD of the Interagency Autism Coordinating Committee met to discuss the current issues and start to lie out a research agenda. This workshop was aimed to have an honest exchange of views to help direct research – the IACC does not directly fund research itself.   It’s a way for researchers and funding agencies to discuss priorities and opportunities. The meeting was webcast live and will be archived on the NIH webpage, when the link is live we’ll post it. In the meantime here is what was discussed.

From the very first set of presentations it was clear that this issue is, like everything else is autism, complicated and messy. Four different presenters using different datasets all showed consistent findings of an increase in neurological (seizure), gastroenterological (GI distress) and psychiatric (ADHD and anxiety) comorbidities in ASD. The designs ranged from parent report, to pediatric registries, to health records that spanned through adulthood, to claims data from a number of different databases. And amazingly, while they actual numbers may be different, the trends in the data are the same. Many researchers pointed out that variability in the numbers could be because diagnostic practices – and that they could be under recognized or misdiagnosed.

Unfortunately, in the past these symptoms have not been well addressed by clinicians or even researchers. They are sometimes the most distressing and in the case of seizures, medically challenging. Sadly these comorbid problems can make ASD symptoms worse. Dan Coury gave the example of sleep – if you don’t get good night’s sleep, your “daytime” behavior changes. Beth Malow pointed out that in a brain of someone with ASD that is wired differently, sleep depravation causes even greater emotional problems. Larry Scahill from Emory presented on triggers for anxiety in people with ASD. These include peer relationships, different sensory stimulation. They are typically different than in typically developing people and the way people with autism express anxiety is different. Multiple co occurring conditions can mean multiple medications, which can lead to even more co occurring conditions. For example, some antipsychotics, used for impulsivity and aggression in ASD has been linked to obesity. Treating one symptom may cause another condition, which may be why people with co-ocurring medical conditions take on average, 5 different medications.

Another co-occuring symptom that is seen in a subgroup is immune dysregulation. Some individuals with ASD have an either overacting or underresponsive immune system, leading to anything from allergies to some GI problems. This means their immune systems react too much, or not enough, when faced with a normal challenge. A group at UC Davis linked to a particular part of the immune system to increased self-injurious and highly repetitive behaviors, and in one study, regression.

One of the presenters, Isaac Kohane from Harvard performed some statistical tools to identify subgroups using one of the large datasets mentioned earlier. For example, those that had seizures almost every day, or those that suffered from persistent infections including ear infections. He suggested that these subgroups might be meaningful in terms of treatment approaches, and even to understand the disorder better.

So what kind of treatments are we talking about? The overarching goal is to treat the co-ocurring condition to improve ASD symptoms. But right now, we aren’t even sure that the current treatments for these conditions are appropriate for those in ASD.

At the end of the meeting, we come back to the question – are these “co-occurring” conditions that are different entities or actually part of ASD itself?   Evidence from genetics shows overlap between genes linked to ASD, ID, OCD and anxiety. Is it possible that these “co-occurring” conditions may all result from the same underlying mechanism, and therefore co-occurring and core symptoms of ASD are responsive to similar treatments? Scientists have been searching for a very long time for a biological mechanism that can separate out different “types” of autism and it hasn’t happened yet. Maybe it is time to take a different approach – and maybe this is the right way to go.


by Klaus Libertus, PhD
Research Associate at the Learning Research and Development Center
University of Pittsburgh

In a study published this week in the journal Frontiers in Psychology we were able to encourage grasping behaviors in three-month-old infants with a family history of Autism Spectrum Disorders (ASDs). This was done by using “sticky mittens” – infant mittens with Velcro attached, to be used with toys that also have Velcro attached. While wearing these mittens, a baby can swipe at a toy and the toy will stick to the mitten – giving the child the experience of actually picking up the toy. You may wonder why one should study the effects of a motor intervention in infants at risk for ASDs – since ASDs are typically defined by the presence of social rather than motor delays. The answer is quite simple, early motor skills are necessary for social interactions. Let me explain.

Successful grasping of objects typically emerges around 5 to 6 months of age. However, rather than the act of grasping itself, what matters more is what happens next. Once a toy has been picked up, the child can explore the object, show it, and share it with others. Parents respond to these behaviors by labeling the object or by encouraging the child’s actions (e.g., by saying “good job, you got the ball”). In short, grasping an object places the child in the midst of dynamic social interactions that are rich in opportunities for learning about social cues and language.

Agreeing with this interpretation, previous work from our lab has shown that encouraging infants’ grasping skills also leads to an increase in their attention towards faces – at least in infants without a family history of ASD. This finding suggests that obtaining a new motor skill may indeed affect development of social skills. In the context of ASDs this is of particular interest, as a growing number of studies have identified motor issues such as poor postural control in infants with a family history of ASD. For example, we recently reported in the journal Child Development that at-risk infants show reduced grasping activity at six months of age. Together, these findings suggest that infants at high risk for ASD may benefit from early interventions targeting the motor domain – especially their grasping skills.

  Our new study addressed exactly this question and brings both good news and not so good news. Overall, our at-risk three-month-olds increased their grasping significantly following motor training – suggesting that at-risk infants will respond to motor interventions. Unfortunately, the same children did not show a meaningful increase in attention towards faces following training – unlike our findings in infants without a family history of ASD. There are different possible explanations for these diverging findings: On the one hand, it is possible that our at-risk infants simply needed more time to learn about the social interactions that follow grasping. On the other hand, it is also possible that there were some infants in our sample who performed worse than the others and reduced our ability to detect changes in the entire group. To examine this possibility further, we currently follow the group of trained at-risk infants to see if their response to our motor training may eventually predict a future ASD diagnosis.

Despite our negative results regarding the social attention task, our findings are encouraging and show that motor interventions can be effective in at-risk children. A key aspect of our intervention was that the parents themselves provided the training. Since parents know their child best, they can uniquely tailor interventions to their child’s specific needs and constraints – significantly improving the effectiveness of the training. Another intervention study that was published this week follows the same approach, and future research should place more emphasis on including the parent when designing and implementing interventions.

Amy Lutz, author of “Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children” and president of the EASI Foundation, introduces her new blog, Inspectrum, hosted by Psychology Today. This is Psychology Today’s first blog focused on the world of severe autism.

View the first post from Inspectrum, “To Cage or Not to Cage? That is Not the Question” here.

On July 2, 2014, Rikki Cabler of Sullivan, Indiana hosted the second annual RJC Memorial Charity 24-Hour Livestream. This 24-hour online-gaming event united gamers, or rather “Mechwarriors”, from around the world to show their support for autism. Surpassing its goal of $10,000, this event raised over $16,000 for the Autism Science Foundation.

Approximately one thousand gamers entered the No Guts, No Galaxy online community to participate in the RJC Memorial Charity event. Rikki and colleagues encouraged gamers to participate by reminding them, “Nearly every Mechwarrior knows someone living with this condition, or a parent of someone with autism. We often know first hand the difficulties that having autism can create, and we hope to organize the fighting force of each of you into a force not only for big stompy robots, but for making a difference in the real world.”

Every year, on July 2nd, Rikki remembers the passing of his father Ronnie Joe Cabler. Looking to commemorate his father on this day, Rikki grew interested in the idea of a livestream charity gaming event. He began collaborating with a YouTube channel host to map out the logistics of hosting such an event, and his ideas quickly began to fall into place.

When Rikki discovered that his girlfriend’s 14-year old son was diagnosed with ASD, he formed a personal connection to autism. Later, once he met a woman who worked for a local autism organization, he decided that his livestream event would support autism advocacy and research. Thereby, this organization became the designated beneficiary of the RJC Memorial Charity 24-Hour Livestream.

Days before the event launch, gamers began interacting on an online discussion board and voiced concerns that the beneficiary did not support vaccinations based on the disproven notion that vaccines cause autism. Although the event was merely hours away from its launch, Rikki and the directors of No Guts No Galaxy did not want to support the message that vaccines are harmful. Therefore, they reached out to the Autism Science Foundation the morning of the event to ask if it would be the new beneficiary of the charity livestream. 

The Autism Science Foundation agreed to become the beneficiary and the event was launched later that day. ASF’s Community Relations Associate, Meredith Gilmer commented, “We are so excited and grateful to be the beneficiary of the annual RJC Memorial Charity 24-Hour Livestream. All of the donations from this event will directly support cutting-edge autism research.”

With a fundraising goal of about $5,000, Rikki and his team were pleasantly surprised to raise over $8,000 at the first annual RJC Memorial Charity 24-Hour Livestream. Doubling its yield this year, the event proved once again to be a huge success. ASF is grateful for these generous donations as well as the team’s commitment to promoting qualified autism science. Rikki and his team hope for the RJC Memorial Charity 24-Hour Livestream to continue supporting ASF for years to come.

Autism: The International Journal of Research and Practice has published an important and interesting new editorial by Dr. David Mandell and Dr. Luc Lecavalier that challenges the methods the CDC uses to collect and publish autism prevalence data, now at 1 in 68. While acknowledging that tracking ASD is no easy task, the authors question whether the CDC’s surveillance studies should be used as a basis for estimates of prevalence.

Read the full article here. 

Having an accurate estimate of the economic cost of autism has many implications for service and system planning. The most recent estimates are almost a decade old and had to rely on many estimates for which there were no good data. Today in JAMA Pediatrics, researchers, including ASF Scientific Advisory Board member Dr. David Mandell, updated older estimates and further expanded our understanding of costs by estimating them for two countries: the United States and the United Kingdom. They also estimated costs separately for children and adults, and for individuals with autism with and without intellectual disability. To estimate costs, researchers reviewed the literature on related studies, conducting a thorough search of studies that estimated direct costs, such as education and service use costs, as well as indirect costs, such as lost wages for family members and the individual with autism. They found that for individuals with autism and intellectual disability, the average lifetime cost was $2.4 million in the US and $2.2 million in the UK.  For individuals without intellectual disability, the average cost was $1.4 million in both the US and the UK. For children with autism, the largest costs were for special education and parents’ lost wages. For adults with autism, the largest costs were residential care and lost wages.

Click here to read the full article.

By Rachel Zamzow

The International Meeting for Autism Research (IMFAR) in Atlanta, GA brought together 1,800 scientists, clinicians, sponsors and stakeholders for the purpose of exchanging ideas, fostering collaborations and ultimately examining the current state of autism research. The meeting also represented a refocusing within the field, as keynote speakers and presenters called the scientific community to adjust how major questions in autism research are approached.

One call for change involved embracing and addressing the inherent heterogeneity of autism. The notion that hundreds, likely thousands, of genetic changes and many environmental factors contribute to autism was reiterated throughout the meeting. In his keynote address, Declan Murphy of King’s College London emphasized the importance of stratifying participant populations by age to provide precision in exploring potential biomarkers for autism. During her talk on brain imaging, Dr. Adriana Di Martino from New York University noted symptom severity, co-occurring disorders, such as ADHD, and gender as additional factors to consider in addressing the heterogeneity of autism.

Presenters also discussed intervention as an area in need of refocusing. In his keynote, Murphy put up a blank slide to represent the current options of effective pharmacological treatment for core symptoms of autism. This dearth of available treatment options is a pressing concern in this field. Several presenters extended this idea to include individualized medicine as a goal for the future of autism research. In addition, Dr. John Sweeney of University of Texas Southwestern encouraged researchers to bridge the gap between clinical research and basic science to improve drug development and inform treatment options.

Another shift evident at IMFAR was increased emphasis on the voices of autism stakeholders, including autistic individuals themselves and their families.  For example, John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s, was a prominent presence on Twitter during the meeting, encouraging attendees to focus on the individual needs and viewpoints of individuals with autism, not just the ever-discussed 1 in 68 statistic. During a scientific panel on gender differences in autism, two women with autism posed important questions to the panel about identifying and treating autism in girls. Lastly, 2014 INSAR Advocate Award recipient Peter Bell implored researchers to spend time within the autism community, leaving the lab at least once a month to personally engage with individuals with autism.

IMFAR 2014 brought together leaders in the field of autism research and advocacy, allowing for the generation of new ideas and collaborations. But the true benefit of this meeting was the refreshing chance to stand back as a field, assess from where we’ve come and refocus on important issues for the future of autism research.


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