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IMFAR 2012 begins

17 May

The International Meeting for Autism Research (IMFAR) started on Wednesday with a press conference and a pre-conference program focused on stakeholders. I was fortunate to be able to attend last year, but not this year. I did call in to the press conference, though and it brought back some of the excitement for me.

Before going on, note that the press conference is covered at the Thinking Person’s Guide to Autism (by people who actually attended!) as IMFAR 2012 Press Conference

The press conference highlights a number of studies which are about to be presented at the conference. It was stressed that IMFAR is a conference where the abstracts are reviewed before being approved, but the studies are not peer-reviewed as in a journal. It is a conference for very new results.

One study highlighted was Beyond ASD: Developmental Outcomes of High Risk Siblings. This is a follow on study to the well publicized baby siblings study that found about 19% recurrence risk for baby siblings of autistic children. This is the study that looks at the other 81%, the kids who did not get an autism diagnosis. Short answer–even among the children who did not get an autism diagnosis, the baby siblings had more autistic traits than children who were not baby siblings of autistics.

Here’s the conclusion from the abstract:

Conclusions: At three years, HR [high Risk]children without an ASD had higher levels of ADOS symptom severity, and lower levels of developmental functioning than LR [Low Risk]children. They were more likely to occupy clusters characterized by lower levels of developmental functioning, and less likely to occupy a cluster characterized by higher levels of developmental functioning and low levels of symptom severity. Descriptively, two-thirds of HR children occupied Clusters 1 and 2, characterized by normative outcomes, whereas one third occupied Clusters 3, 4, and 5, characterized by elevated ADOS severity, lower developmental quotients, or both. These results suggest an early ‘broader autism phenotype’ in HR siblings characterized by ASD symptoms sub-threshold for diagnosis and/or developmental delays.

and the summary:

A new study presented at the International Meeting for Autism Research examined the development of the younger siblings of children with an Autism Spectrum Disorder (ASD). ASDs are developmental conditions characterized by problems with interaction, communication and repetitive behaviors. Previously, an international consortium of researchers found that almost one in five of the younger siblings of children with an ASD themselves developed an ASD. The researchers’ new findings suggest that of the younger siblings who did not develop an ASD, one in three faces challenges at three years of age.

The challenges faced by these younger siblings of children with ASD include slight delays in verbal and nonverbal functioning and somewhat elevated levels of autism-related characteristics. Examples of a child’s autism-related characteristics—which are not as severe as those of children with an ASD—include lower levels of back-and-forth play with others, and lower levels of pointing to express interest in what is going on around them. Overall, the researchers say, the majority of high-risk siblings are developing typically at three years of age, but a minority face challenges that appear to reflect subtler forms of ASD-related problems. Follow-up of these children through school age is necessary to understand their long-term outcomes.

The second study highlighted was Shared Decision Making (SDM) and the Treatment of Autism Spectrum Disorders (ASDs). My guess is that the themes presented in the summary below will not come as a great surprise to those who have read parent narratives on the internet. I.e. that parents look to pediatricians for treatment options for their autistic kids, but the doctors often don’t see autism treatment to be something they can do.

The goal of this qualitative study was to describe factors influencing shared decision making for treatment decisions by pediatricians and parents of children with autism spectrum disorders (ASD). We conducted in-depth interviews of 20 pediatricians and 20 parents of children with ASD 2-5 years of age. The analysis of the interview transcripts revealed that many pediatricians did not view treatment for autism spectrum disorders to be within their scope of practice or competence. Parents did not view their pediatrician as knowledgeable or invested in making treatment recommendations. We also found that parents often independently pursue treatments, not benefiting from professional guidance regarding safety and effectiveness. Results from this study indicate substantial barriers to shared decision making between pediatricians and families in the care of autism. Research is needed in order to understand how best to help 1) parents have realistic expectations of their pediatrician and 2) improve training of pediatricians to be effective partners in care of children with ASDs and their families

The third highlighted study was Oxytocin’s Impact on Social Cognitive Brain Function in Youth with ASD. The study member who presented this for the study called it “very exciting and very preliminary”. Two features of this study stand out immediately: (1) it is a double-blind, crossover, randomized control study and (2) it includes fMRI (functional magnetic resonance imaging).

Here is the summary:

We are presenting the preliminary data from the first ever double blind, placebo controlled study of changes in brain activity in children with an ASD (ages 7-18) after a single dose of oxytocin. The initial results indicate that oxytocin, administered via nasal spray prior to the scan, increased activity in brain regions known to process social information. Oxytocin is a naturally occurring substance that is produced in the brain and plays a role in regulating social abilities.

These results provide the first, critical steps towards devising more effective treatments for the core social deficits in autism which may involve a combination of validated clinical interventions with an administration of oxytocin. Such a treatment approach will fundamentally alter for the better our understanding of autism and its treatment.

There were two more studies highlighted at the press conference but, I’m sorry to say, I was not able to listen to those presentations.

Measuring Interactive Developmental Pathways in ASD: A Dual-Domain Latent Growth Curve Model Symptoms, Diagnosis & Phenotype – Cognition & Behavior: Early ASD

As children with autism spectrum disorders (ASD) grow up, they embark on quite different developmental pathways. Some individuals learn to live independently, maintain friendships, and find work, many require some support in their daily lives, and still others experience many challenges. Understanding how very young children with ASD develop important early skills can provide vital clues that might help predict these various pathways. For example, researchers have suggested that greater social interest and awareness in children with ASD may have a positive impact on language, which in turn may have a positive influence on other aspects of learning and development. This model of “cascading” effects is intuitively appealing but has not been validated in ASD. The Canadian “Pathways in ASD” Study (funded by CIHR and other provincial governments and foundations) is uniquely able to shed light on this issue as it is the largest prospective follow-up study of very young children with this disorder. As part of this study, we used information about 365 2-to-4-year-olds with ASD to examine whether such cascades occurred across early social competence and language abilities in the year after diagnosis. On average, the children made significant progress in social competence and remarkable gains in language abilities over that year. Within this one-year period, greater change in social competence in the first year was associated with more growth in language skills. However the reverse wasn’t true: early language ability had a much smaller effect on changes in children’s social competence. These findings therefore support the idea of early developmental cascade effects. Early advantages and gains in social competence may lead to advantages in other domains. However, children whose very early social skills lag farther behind at time of diagnosis are also less likely to show language progress. This study highlights the importance of early interventions that focus on emerging social competence (versus only language skills), as these are likely to “spill over” across other developmental pathways.

and

Head Lag in Infants At Risk for Autism

This new prospective study of six-month-old infants at high genetic risk for autism identified weak head and neck control as a red flag for autism spectrum disorder (ASD) and language and/or social developmental delays. Researchers at the Kennedy Krieger Institute concluded that a simple “pull-to-sit” task could be added to existing developmental screenings at pediatric well visits to improve early detection of developmental delays.

While previous studies have shown that head lag indicates developmental delays in children with cerebral palsy and preterm infants, postural control in infants at risk for ASD had not been examined. In this research, Dr. Landa and her team assessed infants in a “pull-to-sit” task, a simple measure of postural control in infants. The findings suggest that motor delays may have an important impact on child development.

Four of the editors from The Thinking Person’s Guide to Autism are at IMFAR this year. Their post on the press conference is already up: IMFAR 2012 Press Conference

Differences in White Matter Fiber Tract Development Present From 6 to 24 Months in Infants With Autism

23 Feb

If you watch for autism related news stories you likely have seen multiple stories on a paper out Friday in the American Journal of Psychiatry: Differences in White Matter Fiber Tract Development Present From 6 to 24 Months in Infants With Autism (full paper available online). The researchers studied brain structure in children and compared those who went on to be diagnosed with autism to those who did not. They found differences in white matter between the two groups. In particular fiber tracks were different.

Here’s figure 1 (click to enlarge) from the paper to give you an idea of what they mean by fiber tracks. Check the brain cartoons on the right. Then check the actual data in the graphs. These are “significantly different” trajectories for these measurements. They are not clear differences that could lead to a diagnostic tool.

Here is the abstract:

Objective:

Evidence from prospective studies of high-risk infants suggests that early symptoms of autism usually emerge late in the first or early in the second year of life after a period of relatively typical development. The authors prospectively examined white matter fiber tract organization from 6 to 24 months in high-risk infants who developed autism spectrum disorders (ASDs) by 24 months.
Method:

The participants were 92 high-risk infant siblings from an ongoing imaging study of autism. All participants had diffusion tensor imaging at 6 months and behavioral assessments at 24 months; a majority contributed additional imaging data at 12 and/or 24 months. At 24 months, 28 infants met criteria for ASDs and 64 infants did not. Microstructural properties of white matter fiber tracts reported to be associated with ASDs or related behaviors were characterized by fractional anisotropy and radial and axial diffusivity.
Results:

The fractional anisotropy trajectories for 12 of 15 fiber tracts differed significantly between the infants who developed ASDs and those who did not. Development for most fiber tracts in the infants with ASDs was characterized by higher fractional anisotropy values at 6 months followed by slower change over time relative to infants without ASDs. Thus, by 24 months of age, those with ASDs had lower values.
Conclusions:

These results suggest that aberrant development of white matter pathways may precede the manifestation of autistic symptoms in the first year of life. Longitudinal data are critical to characterizing the dynamic age-related brain and behavior changes underlying this neurodevelopmental disorder.

If the idea of differences in fiber tracks seems somewhat famiiliar, last year Eric Courchesne at UCSD reported at IMFAR about
Abnormally Accelerated Development of Higher-Order Long-Distance Cerebral Tracts In ASD Infants and Toddlers. The paper was highlighted at the IMFAR press conference (and discussedhere at Left Brain/Right Brain.

At the press conference David Amaral mentioned similar work at the IMFAR press conference last year.

At 51:20 in the video above, Prof. Amaral speaks on the work that precocious brain growth at 4-6 months of age in infants and is most prominently present in children with regression.

“..despite the fact that the regression, the behavioral regression, takes place at 18 months or 24 months, the brain changes actually started taking place at 4 to 6 months. So it actually casts a doubt on the idea that a vaccine, the MMR vaccine for example that’s taken at 12 to 18 months, would be actually the precipitating factor because things were starting much much earlier than that.”

The talk that Prof. Amaral was speaking about was Total Cerebral Volume Is Associated with Onset Status In Preschool Age Children with Autism.

C. W. Nordahl1, A. Lee1, M. D. Shen1, T. J. Simon1, S. J. Rogers1, S. Ozonoff2 and D. G. Amaral1, (1)Psychiatry and Behavioral Sciences, UC Davis M.I.N.D. Institute, Sacramento, CA, (2)Psychiatry and Behavioral Sciences, M.I.N.D. Institute, UC Davis, Sacramento, CA
Background: Autism is a heterogeneous disorder, and multiple behavioral and biological phenotypes likely exist. One well-characterized behavioral phenotype is onset status. While some children with autism exhibit symptoms very early in life, others experience a regression or loss of previously acquired skills. There is currently very little known about the neural substrates associated with these two different behavioral trajectories in autism.

Objectives: We examined the relationship between total brain volume and onset status in a large sample of 2-4 year old children with autism spectrum disorder (ASD) (n = 48, early onset, n = 58, regression) and a comparison group of age-matched typically developing children (TD) (n = 55).

Methods: Diagnoses and autism severity were based on ADOS and ADI-R scores and clinical judgment by trained, experienced psychologists. Developmental quotients (DQ), verbal quotients (VQ) and nonverbal quotients (NVQ) were based on the Mullen Scales. Onset status was categorized based on parent reports from related ADI-R questions. Total cerebral volume was compared between autism onset groups as well as relative to age-matched typically developing controls. Autism severity and DQ were also evaluated in relation to brain volume and onset status.

Results: Children who exhibited regression had significantly larger total brain volumes than children with early onset autism (p = .004). Total brain volume in the early onset ASD group did not differ from the TD group, whereas total brain volume was significantly larger in the children with regression. Moreover, children with regression had significantly lower VQ (p = .03) and higher (i.e. more severe) ADOS social and communication scores (p = .02). Total brain enlargement remained significant even after controlling for these variables. There were no significant correlations between total brain volume and VQ or ADOS scores.

Conclusions: Total brain enlargement has been reported in children with autism under the age of five. However, behavioral associations with abnormal brain enlargement have not been fully explored. Our findings suggest that abnormal brain enlargement in autism is associated with a parent-reported regressive pattern of onset and more severe symptoms involving both developmental impairment and ASD severity.

The idea that autism, even regressive autism, has signs as early as 6 months is challenging to some groups on two levels. First the idea that autism involves physical differences in the brain. Second that these differences are present well before regression, or well before vaccines which are sometimes proposed as precipitating events.

The study itself has limitations, one being generalizability. It makes a lot of sense to monitor siblings of autistics since the recurrence risk is high and the chances of collecting data on autistics is higher than in the general populaiton. However, this leaves us with the question: are the types of autism found in siblings (familial autism) representative of all forms of autism?

Apply for IMFAR Travel Grant from the Autism Science Foundation

23 Feb

Are you interested in attending IMFAR (the International Meeting for Autism Research)? The 2012 conference will be held in Toronto, May 17 – May 19. I attended last year in San Diego with the assistance of the Autism Science Foundation (ASF) through a travel grant. If it was possible, I would go this year as well even without the grant.

Applications are open for this year’s ASF travel grants but the deadline (February 29) is coming very quickly. If you are thinking of applying, now is the time.


Here is the announcement from the Autism Science Foundation
. I’ll highlight this section:

Applicants should send a letter to grants@autismsciencefoundation.org describing why they want to attend IMFAR and explaining how they would share what they learned with the broader autism community.

Below is the announcement in full:

We are now accepting applications for travel grants to send a limited number of parents of children with autism, individuals with autism, special education teachers, and other stakeholders to attend the International Meeting for Autism Research (IMFAR). This year the conference will be held in Toronto, Canada from May 17-19.

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.

Grant Requirements:

Grantees must submit the original receipts for reimbursement and are expected to submit completed travel expense forms within 15 days of return from IMFAR.
Grantees are asked to participate in ASF related activities at IMFAR including a group photo and social media promotion. Full details will be shared closer to the event.
After attending the conference, grantees are asked to share what they learned in their own communities to further spread the knowledge gained within 6 months of attending IMFAR. Grantees are asked to send a short write-up plus photos or a video of their activity for use by ASF.

To apply:

Open to autism stakeholders: individuals with autism, parents of children with autism, special education teachers, graduate and undergraduate students, journalists, and others.
Grants are awarded to US residents only, over 18 years of age.
Applicants should send a letter to grants@autismsciencefoundation.org describing why they want to attend IMFAR and explaining how they would share what they learned with the broader autism community.
Letters should be sent as Microsoft Word attachments of no more than 2 pages, 12-point type, “Arial” font, with standard margins.
In the email subject line please write: IMFAR Grant.
Letters must be received by February 29, 2012.

Recipients will be announced in late March.

Apply Now for a Travel Grant to IMFAR

18 Jan

IMFAR, the International Meeting for Autism Research is approaching and that means that it is time for the Autism Science Foundation’s Travel Grants. These are grants for stakeholders which reimburse up to $1,000 of expenses to attend IMFAR.

I was an ASF Travel Grant recipient last year. It was a great experience. A very busy experience, but a great opportunity to meet a number of researchers and see talks on the latest research.

Here is the email announcement from the ASF:

Apply Now for a Travel Grant to the International Meeting for Autism Research

The Autism Science Foundation announced today that it is offering a limited number of grants to parents of children with autism, individuals with autism, special education teachers, and other stakeholders to attend the International Meeting for Autism Research (IMFAR). This year the conference will be held in Toronto, Canada from May 17-19.

The awards will reimburse up to $1,000 of actual expenses and 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.

“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.

To apply:

Open to all autism stakeholders: individuals with autism, parents of children with autism, special education teachers, graduate and undergraduate students, journalists, scientists, and others.
Grants can be awarded to US citizens only.
Applicants should send a letter to grants@autismsciencefoundation.org describing why they want to attend IMFAR and explaining how they would share what they learned with the broader autism community.
Letters should be sent as Microsoft Word attachments of no more than 2 pages, 12-point type, “Arial” font, with standard margins.
In the email subject line please write: IMFAR Grant.
Letters must be received by February 29, 2012.

Additional application information is available at http://www.autismsciencefoundation.org/what-we-fund/apply-for-IMFAR-travel-grant.

Grant recipients will be announced in March.

My IMFAR poster

1 Jun

I was fortunate enough to attend IMFAR this year on an Autism Science Foundation stakeholder travel grant. This is the second year of the program, and I hope that they continue it. Given that, I thought it would be valuable to write about my day-to-day experiences: Looking back at IMFAR from an ASF Stakeholder Travel Grant Awardee

I have to admit, my experiences were probably out of the ordinary for a stakeholder travel grantee. I hope that many or even most will be people who are not familiar with scientific conferences (I have attended several over the past 20 years). I do hope that more bloggers attend and report back, though, so experiences with the press conference could be of value.

One aspect of my IMFAR visit that I didn’t discuss in detail on the ASF blog was that of presenting a poster. My topic was:

Parent Reported Status and Expectations for Their Autistic Student Children:
An Analysis of the 2007 National Household Education Survey

Here’s the abstract:

Background: National surveys provide a good source of information on autistic populations within the United States. The 2007 National Survey for Child Health was used to estimate autism prevalence (Kogan 2009), as well as to make comparisons of such family factors as the divorce rate (Freedman 2010). A similar survey, the National Household Education Surveys Program (NHES), is an opportunity to explore comparisons between parent-reported factors involving the lives and education of autistic and non-autistic students.
Objectives:

1. Compare educational placements and percieved educational abilities between children with (a) parent-reported autism spectrum disorders (ASD) and (b) children in the general population.

2. Explore parent expectations for the future of their ASD student.

Methods: Data used for this study were taken from the National Household Education Surveys Program (NHES 2007). NHES had 10,682 total respondents, representing students ages 3 to 20 years. 127 parents identified their child as having autism and an additional 37 identified their child as having pervasive developmental disorder.

Parent responses for this group (164 total, or about 1 in 65) were compared to those of the parent responses within the general survey population.

Results: 75% of students with parent-reported ASD have an Individualized Education Plan. Parents reported that their ASD students are more likely to have repeated a grade (23% ASD vs. 9% without) or be home schooled (5.5% vs. 2.9%) or be in a program that does not assign letter grades (37% vs. 22%). ASD students were reported as less likely to be in private school (9.6% vs. 13.4%) and to have moved in order to attend a specific school (17.7% vs. 21.6%). Parents are generally satisfied with their child’s school (82.2% rated somewhat or very satisfied), but less so than for non-autistic students (90.7%). Of those children who receive letter grades, the number of ASD students getting “mostly A’s” or “mostly B’s” is high (79.6%), but less than the general population (84.1%). Parents of students in middle school or above were asked about their future expectations. The fraction of ASD students whose parents’ expectation were that their child would receive less than a high school diploma is much higher than for the general population (6.3% vs. 0.6%). However, by far the majority of parents expect their autistic student to receive a high school diploma, with most expecting at least some vocational school or college to follow. Most parents in the general population expect that their child would achieve a 4-year or graduate degree (72.7%). While the parental expectations for ASD students to obtain a bachelor or higher degree is much lower (28%), this is still a notable fraction of the autistic population.

Conclusions: Parents report that their ASD students lag behind the general student population in academic performance. Parent report high satisfaction with their schools, but at a lower level than the general population. Many parents of ASD students report high expectations for their ASD students. Services research should consider how to support individuals with ASD with a broad spectrum of abilities and expectations.

Here’s the actual poster:

Imfar poster 2

If you are unfamiliar with a poster presentation, here’s the short version: You take your study and write it up on a 3′ x 4′ piece of paper. You stand in front of the poster and discuss it with the people who are interested.

I was very lucky in that I was right by one of the doors, so a lot of traffic came my way. That traffic included a few people who knew me from my blogging here. One reader came up and said “Hi Sullivan!”. A group from Kennedy Krieger stopped by and told me they wanted to take a picture of the poster to show their colleague–who I was citing in my work. I don’t think they are used to people saying, “You guys from Kennedy Kreiger rock!”, but they got it from me. I spoke with a researcher I know who worked under Ami Klin (formerly of Yale, now at Emery), whom I got to meet there too.

I was scheduled for the 10am time slot on Friday. This means I had to duck out early from Eric Courchesne’s keynote talk. I spoke with him later and he asked me about his talk. I told him it was very good and he responded with the killer question: what did I think of the last 15 minutes? I had to admit that I was standing in front of my poster then and missed his conclusion. To which he responded (with a bit of a mischievous grin, if I may say): you missed the best part! as he disappeared through a door.

I was scheduled for 1 hour. Posters can be a bit tedious when you stand there waiting for someone to talk with. I was lucky in that I went pretty solid for 2 hours.

A poster presenter needs to have the 1 minute “walk through” of the study. Mine was basically this: A lot of work has been focused on the National Survey of Children’s Health (NSCH). This is the study which formed the basis of one of the “autism prevalence is 1%” last year. There didn’t seem to be much focus on the educational survey which I presented, and I was there to make it known that there was this other data source. I didn’t dwell too much on the prevalence (1 in 65) or the fact that the prevalence was basically flat with age (Figure 1). What I found interesting was the fact that there is a very wide range of parental reports of abilities, difficulties and expectations for their kids. Yes, by every measure shown, autistic students are more likely to be in ungraded classrooms, get lower grades, have reports of behavior problems and the like. But a notable fraction are being parent-reported as getting “A’s”. Most parents expect their children to graduate high school (over 90%) and many parents expect some college or even graduate school. Those last questions were only asked of parents of children in middle school and above, so they had some basis to make the predictions.

I pointed out that there is no way to see how realistic the parent’s expectations were (and that there was a far more rigorous study being presented at IMFAR on the transition out of school for autistic students–that of Paul Shattuck’s group in St. Louis–and that expectations exceed reality). The first person to look at my poster noted that 30% of parents of children overall (the general population) were expecting their kids to go to graduate school, which shows that all parents are proud of and optimistic about their children.

There was a wonderful presentation on the poster next to mine by a team from Georgia Tech. I hope to include that team’s work in a later post.

I am very grateful that IMFAR accepted my abstract. I went in with the idea that my poster might be the least interesting study presented. In the end, if I do say so myself, I held my own. Sure, it’s not earth shattering research. But there were interesting points. For me it was a great experience, even if it meant a flashback to my grad school days of standing in front of a poster.

Interviews from IMFAR: Alex Plank brings the conference to the public

18 May

One of the unexpected joys of attending the IMFAR conference this year was meeting Alex Plank of Wrong Planet. I plan on writing more about Alex soon, but for the moment, let me bring you some of the interviews he did. His team is the same one that brought us the press conference. That was no small effort. They were up most of the night getting that out so fast. As you will see, Alex takes videography very seriously. As such, I would recommend playing these full screen or going to YouTube and playing them in a larger format that is afforded by out column size. It’s quality work. I love the way he’s working with various locations in these interviews.

John Robison at Imfar

David Mandell at IMFAR 2011

Clara Lajonchere, VP of Clinical Programs at IMFAR

Peter Bell of Autism Speaks – IMFAR Interview in San Diego

Geraldine Dawson Interview

Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey

13 May

I have written in the past that I will be attending IMFAR, the International Meeting For Autism Research. I will be supported by a stakeholder travel grant from the Autism Science Foundation, for which I am very grateful. What I haven’t mentioned before is that I was planning to attend IMFAR even before applying for the stakeholder grant. I’ve been planning on attending since I submitted an abstract: Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey.

For those who have read this blog for some time, it will come as no surprise that I have a keen interest in autism research. In my writing I have often analyzed data from public datasets like the California Department of Developmental Services data. A while back there was a lot of attention placed on the National Survey of Children’s Health. The big news was the announcement of an autism prevalence of about 1%, and a notion that these data pointed to a very high “recovery” rate from autism. I took a look at the recovery rate question. I also looked for a what other information we might gather from the survey, including debunking the idea that 80% of parents of autistic kids divorce.

One of the big news stories from last year’s IMFAR was the announcement that autism does not result in a high divorce rate. The team presenting at IMFAR were much more rigorous in their analysis than the report of raw data that I did. But I have to say that when I read the IMFAR abstract I thought, good to see that team make this fact known. I also thought to myself: I’m asking the right questions of the data I am analyzing.

I also know how to give a presentation at a conference, having done so many times in the past. But conferences don’t let people present using a pseudonym. This was somewhat frustrating, as I have been looking at data from the National Household Education Surveys Program (NHES) and found some very interesting results. Once people took it upon themselves to out me, that was no longer an obstacle, so I submitted an abstract for IMFAR 2011:

Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey.
M. J. Carey
Background: National surveys provide a good source of information on autistic populations within the United States. The 2007 National Survey for Child Health was used to estimate autism prevalence (Kogan 2009), as well as to make comparisons of such family factors as the divorce rate (Freedman 2010). A similar survey, the National Household Education Surveys Program (NHES), is an opportunity to explore comparisons between parent-reported factors involving the lives and education of autistic and non-autistic students.

Objectives:
1. Compare educational placements and perceived educational abilities between children with (a) parent-reported autism spectrum disorders (ASD) and (b) children in the general population.
2. Explore parent expectations for the future of their ASD student.

Methods: Data used for this study were taken from the National Household Education Surveys Program (NHES 2007). NHES had 10,682 total respondents, representing students ages 3 to 20 years. 127 parents identified their child as having autism and an additional 37 identified their child as having pervasive developmental disorder. Parent responses for this group (164 total, or about 1 in 65) were compared to those of the parent responses within the general survey population.

Results: 75% of students with parent-reported ASD have an Individualized Education Plan. Parents reported that their ASD students are more likely to have repeated a grade (23% ASD vs. 9% without) or be home schooled (5.5% vs. 2.9%) or be in a program that does not assign letter grades (37% vs. 22%). ASD students were reported as less likely to be in private school (9.6% vs. 13.4%) and to have moved in order to attend a specific school (17.7% vs. 21.6%). Parents are generally satisfied with their child’s school (82.2% rated somewhat or very satisfied), but less so than for non-autistic students (90.7%). Of those children who receive letter grades, the number of ASD students getting “mostly A’s” or “mostly B’s” is high (79.6%), but less than the general population (84.1%). Parents of students in middle school or above were asked about their future expectations. The fraction of ASD students whose parents’ expectation were that their child would receive less than a high school diploma is much higher than for the general population (6.3% vs. 0.6%). However, by far the majority of parents expect their autistic student to receive a high school diploma, with most expecting at least some vocational school or college to follow. Most parents in the general population expect that their child would achieve a 4-year or graduate degree (72.7%). While the parental expectations for ASD students to obtain a bachelor or higher degree is much lower (28%), this is still a notable fraction of the autistic population.

Conclusions: Parents report that their ASD students lag behind the general student population in academic performance. Parent report high satisfaction with their schools, but at a lower level than the general population. Many parents of ASD students report high expectations for their ASD students. Services research should consider how to support individuals with ASD with a broad spectrum of abilities and expectations.

The crude administrative prevalence is quite high at 1 in 65 (1.5%). Notably higher than the 1% value in the last CDC prevalence estimate and the estimate from the NSCH from the same year. As you can see, this is not where I placed the emphasis in this abstract.

What struck me when I looked at these data was the evidence for how broad the spectrum is. Most students are on an IEP. Students with parent-reported autism are in non-graded environments more, and are not getting as high grades. But, there are also a large fraction whose grades are high and there is a small, but notable, group whose parents have expectations of college and beyond.

One major question is how realistic are these parent expectations? How well do these students really do on transition out of school? Another presentation at IMFAR looks into that. This is by Prof. Shattuck’s group at Washington University at St. Louis. To be very clear, I had nothing to do with this study and didn’t even know it was in the works. Prof. Shattuck’s work is far more rigorous than the abstract I submitted, but I’m encouraged to be asking good questions at least. Here is his abstract:

110.096 75 The Role of Parental Expectations In Predicting Post-High School Outcomes for Youth with ASD. J. L. Taylor*1 and P. Shattuck2, (1)Vanderbilt Kennedy Center, (2)Washington University

Background: There is considerable variability in post-high school outcomes of young adults with ASD. Underemployment is common, and many young adults continuing living with their parents or in supported settings after leaving high school. Research examining predictors of independence among adults with ASD has focused on characteristics of the adult that are difficult to change, such as early language or IQ. The present study focused on one malleable factor that is related to adult outcomes in typically developing individuals: parental expectations.

Objectives: This study had two objectives: 1) to describe parents’ expectations for the post-high school educational, occupational, and residential outcomes of their son or daughter with ASD; and 2) to determine the correspondence between parental expectations and outcomes.

Methods: This study used data from waves 1 and 4 of the National Longitudinal Transition Study 2 (NLTS2), a nationally representative, 10-year longitudinal survey of adolescents in special education. Participants for this study included 390 parents whose son or daughter had received a diagnosis of ASD through the school system and had exited high school by wave 4.
Parental expectations were assessed at wave 1, while youth were still in high school, with the following questions: “How likely do you think it is that (youth) will:” 1.) “graduate from a 4-year college;” 2.) “eventually will get a paid job;” 3.) “eventually live away from home on (his/her) own without supervision.” The son or daughter’s educational activities, current living arrangement, and work status were measured at wave 4. Severity of impairment (conversational ability, social communication, mental skills) was statistically controlled in all analyses.

Results: One-quarter (27%) of parents expected that their son or daughter would graduate from a 4-year college, 88% expected that their son or daughter would work for pay, and one-half expected that he or she would live outside the home without supports. Family income was not independently related to parents’ expectations that their son or daughter would attain a 4-year degree or live outside of the home without supports. Families with higher incomes were more likely to expect that their son or daughter would work for pay, B=.08, p.10. Parental expectations did, however, predict the likelihood that youth would be working for pay, OR=6.05, p<.01.

Conclusions: For many parents of youth with ASD, expectations for their son or daughter’s post-high school living arrangements and education may not be realized. Expectations for paid employment, however, may increase the likelihood of post-high school employment.

Again, for emphasis: “Only 39% of youth whose parents said they “definitely would” graduate from a 4-year college were currently enrolled or had graduated; 45% of youth whose parents said the “definitely would” live away from home independently were currently doing so”.

The question is: how can we achieve the goal where more autistics make the transition from school to adulthood and employment or college? I don’t expect all to make that transition, but I feel strongly that we can do a lot better as a society than we are now.

note–I originally posted this last month when the Abstracts for IMFAR 2011 were first put online. Unfortunately, they were online by mistake. There was an embargo still in place. I pull the article then and am re posting it now that the embargo is lifted. Friday at 9am, I will be standing in front of the poster.