Monday, May 30, 2011

IMFAR 2011: The Clinical Face of Anxiety in Autism

Dr. L. Scahill, Yale University School of Medicine

The following is a modified transcription of Dr. Scahill's talk. Any glaring omissions or errors are my own. INSAR members can listen to Dr. Scahill's talk in its entirety via its abstract page. -SR

Fears, phobias, and worries; Toward better measurement of anxiety in ASD (Autism Spectrum Disorders)

Dr. Scahill is very interested in identifying compounds that can treat target problems in people with autism and Tourette's syndrome and the like. But how do we get to measure the targets that we think are important?

We've seen in many posters [at IMFAR] that anxiety is common and adds to despair and disability in children with autism, but we need to find a way to measure it. This is an inspection of how we might go about that.

Disclosures: Dr. Scahill has consulted with companies who have paid attention to autism and Tourette's. They have compounds that should be of interest to us that in some cases are not yet on the market.

The questions he'd like us to think about -- he can't say we're going to answer all of them -- are:
  • How common are anxiety disorders in children and adolescents with ASD?
  • Are some anxiety disorders more common than others in ASD?
  • Does anxiety look the same in ASD vs typically developing youth?
  • Should we be thinking about dimensions rather than categories?
  • Is there overlap between anxiety and ASD? Or is there a blend, a subgroup of children with autism who have anxiety as part of their syndrome?
  • Are there differences by IQ?
By doing a survey of parents, it was found that children with autism have lots of fears. He actually uses "how does the kid do at the barber shop?" as part of his clinical interviews. If a kid can make it through a trip to the barber shop, and it's not a big event, that kid's probably not too anxious. But then there are kids who can't go to the barber, and can't go to the dentist. These kids have lots of fears, and this is something the parents have been telling us about -- a lot. These kids also can protest changes in routines, for instance not letting their mother turn right out of the driveway.

Manifestations of Anxiety in ASD:
  • Phobias
    • Loud noises
    • Barbers and dentists
    • Storms
    • Crowds
  • Anxiety
    • Protest changes in routines
    • Reluctance in new situations
    • Protest separation from parents
    • Avoid social situations - seen more in teenaged kids
    • Excessive tension and restlessness
What we see by looking at a number of studies, on mostly kids, is high rates of anxiety. There are several different methods of assessing this anxiety, but they all show, fairly similarly, that there is an elevated level of anxiety disorder or symptoms in kids with ASDs.

Several kids had anxiety symptoms in more than one diagnostic category. We see this in typically developing children with anxiety as well. But when we look at the rates, we see many children who have more than one disorder.

ASD Twin study in the UK (Hallett et al.) had access to data from 128 twin pairs where at least one twin had screened positive for ASD. Most of the twins has IQs above 70. The controls who screened negative for ASD were also screened for anxiety. Parents filled out evaluations, with an anxiety score from 0 to 3, in diagnostic categories -- which is not the same as a diagnosis. Categories were:
  • Total Anxiety
  • Social Anxiety
  • Separation Anxiety
  • OCB (Obessive Compulsive Behavior)
  • Generalised [sic] Anxiety
  • Panic
  • Depression
There were dramatic differences in the twins with autism compared to the non-ASD controls matched for age and gender and more or less by IQ. Really dramatic differences, especially in Total Anxiety, Separation Anxiety, OCB, and Generalised Anxiety.

Initial conclusions:
  • Fair to say that youth with ASD are at higher risk for anxiety disorders. 
  • Most common:
    • Simple phobia
    • Social phobia (wide variation)
    • Separation Anxiety
    • Generalised Anxiety Disorder
  • Multiple anxiety disorders often present
  • Dimensional approach is best fit for treatment studies (i.e., inclusion and outcome)
He has mined and studied data from four large-scale multi-site trials of Risperidone [Risperdal], Methylphenidate [Ritalin], Citalopram [Celexa], and Risperidone plus Parent Training. Characteristics included age, gender, ASD or not, and IQ. He used the 20-item CASI Anxiety scale and the ABC Aberrant Behavior Checklist.

He thought repetitive behavior and anxiety would go together, but based on the results from the Citalopram study which included screening for repetitive behaviors -- it doesn't appear to be so. Though subjects had lowered irritability, which was not a surprise. Also lowered self-injury, and social withdrawal -- meaning the extend to which a person responds to an initiated action from another person and the extent to which they initiate action on their own.

What he saw is that there is no real pattern, no sense that the anxiety scale is mapping so easily. As soon as he thought he might see something, another column showed that it doesn't really matter. Scahill thinks that's good, that means the data is measuring something different.

Top seven CASI items based on two samples from RUPP [Research Units on Pediatric Psychopharmacology] sample. They're parent-measured, but he considers them believable.
  • More anxious in social situation than most kids
  • Acts restless or edgy
  • has difficulty falling asleep
  • Is overly fearful of specific objects
  • Upset when expects to be separated from parents
  • Is extremely tense or unable to relax
  • Is excessively shy with peers
Bottom six CASI items in both samples are items that represent a high level of inference from parents -- things kids can't tell their parents about if they're non-verbal:
  • Worries about physical health
  • Complains about heart pounding
  • Worries that disaster will separate them from their parents
  • Has nightmares about being separated from parents
  • Complains about feeling sick when expects separation from parents
  • Worries about being left home alone or with sitter
Social anxiety. Scahill thought there was going to be a real connection between anxiety and social anxiety. Particularly in "higher functioning" kids.
  • Even vague awareness of social disability may induce anxiety in social situation
  • "Failures" in social interaction may promote social avoidance - if you're not doing so well, it's an aversive to be in those situations
  • Presence of social anxiety may amplify social avoidance and social disability - because even if they're interested, kids are not putting themselves in situations where they can benefit from interaction
This caused him to want to look into social anxiety. So, he looked at a 20 country, 103,000+ person survey conducted by WHO. The WHO wanted to know: are there differences in social anxiety between developing and non-developing countries?

If you look at the DSM-IV, you'll see that there are two parts to social anxiety factors:

1) Interaction items -- more relevant to ASD
  • Meeting new people
  • Going to parties
  • Expressing disagreement
  • Talking with strangers
  • Dating situations
  • Entering an occupied room
2) Performance items -- not endorsed as often
  • Writing/eating/drinking while being watched
  • Using public bathrooms
  • Speaking in meetings/class
  • Working while being watched
  • Public speaking/performance
What about differences by IQ? It doesn't seem to matter than much based on correlations with the 20-item CASI Anxiety Scale. The good news is that is that it's possible to identify an anxiety measure, parent-rated, that cuts across IQ.

CASI Anxiety Scale: Tentative Conclusions
  • Shows orderly distribution (across IQ range)
  • Solid internal consistency
  • Appears to be measuring a separate construct
  • Social anxiety (unfortunately) not well-covered
  • Separation Anxiety "over-represented" (8 items out of 20)
  • Six items have low rate of endorsement
  • Unclear if sensitive to change - we need to test that
Overall conclusion: anxiety disorders appear common in ASD
  • Generalized Anxiety Disorder, separation anxiety and social anxiety appear to be most common (social anxiety appears to the be variable depending on the sample and the method used to define it).
  • A dimensional approach fits best for treatment and trials -- not really a conclusion, but an opinion -- and he's sticking to it, because he thinks it's the right approach.
  • Unanswered at the moment is [anxiety as a] co-occurrence versus an ASD symptom. He's not so sure he's thinking of it as a co-occurrence; he's thinking this is a problem for perhaps a large subgroup of children with ASD.
  • Anxiety in ASD vs. typically developing kids: He doesn't think we know the answer to this, but it would be a good thing to find out. 
  • We need to know more about differences in IQ.

Friday, May 27, 2011

IMFAR 2011: Neuropathology of the Amygdala in Autism

C. M. Schumann, UC Davis MIND Institute

The following is a modified transcription of Ms Schumann's talk. Any glaring omissions or errors are my own. INSAR members can listen to Ms Schumann's talk in its entirety via the abstract page. -SR

The amygdala is enlarged in children with autism, and this has been a consistent finding, in several studies.

By 2.5 years of age, the amygdala is enlarged in children with autism by about six percent. Longitudinal studies show that amygdala enlargement continues to increase -- by four years of age, there is a nine percent enlargement, compared to controls.

What's interesting is that the total brain volume is larger in children with autism in this age range, but that volume is not necessarily rapidly growing during this time -- it's staying fairly consistent, and not necessarily growing faster as the amygdala is.

The growth pattern doesn't occur in all the autism subgroups studied; there was quite a lot of heterogeneity. Some of the autism subgroups experienced growth rates similar to their typical control counterparts. Another group experienced slower growth than the typical kids. Then another, fourth group grew considerably faster -- about nineteen percent, compared to the typical controls. It'll be interesting to see if this heterogeneity represents a difference in behavioral phenotypes.

From Schumann's group's 2004 study: typical males show amygdala growth from age 7 to 18. In males with autism, the amygdala is enlarged -- but it is not undergoing that same age-related increase in size. So even if you don't detect a difference in macroscopic volume, there is a different developmental process happening, and likely the pathology is still present -- and changing.

Put in context with numerous other MRI studies about the macroscopic volume of the amygdala in people with autism: if the amygdala is measured during young childhood, it will be enlarged. However, an interesting trend is starting to emerge in that during the adolescent period, there is no difference in volume [between subjects with autism and controls]. And in adults with autism, some studies have seen a reduction in the size of the amygdala.

So, in childhood, the amygdala is larger -- but that enlargement appears to be limited to that childhood phase.

If the amygdala is enlarged, or growing too fast, what does that mean? What is contributing to that abnormal growth? Are there too many neurons, glia, synapses -- or other things that contribute to volume: vasculature, myelin, dendritic arborization?

To understand this at the cellular level, researchers have to explore the actual tissue. They need MRI [imaging] studies to understand macroscopic growth, and for indicating when they should look at the pathology, and what kind of pathology they're trying to define. And they can image large numbers of subjects, over time; they can look at the heterogeneity and the phenotyping. They can look at that and ask what it is that's going wrong -- but then they need to look at the underlying neurobiology of the disorder in post-mortem human brain tissue to get to that link of the biological basis of autism.

Schumann's group carried out a 2006 study in which they asked, is there a difference in the number of neurons -- a difference in the volume or the size of the neurons? They used post-mortem human brain tissue. It was a stereological study because they were not measuring density; they actually estimated the number and size of the neurons.

They had nine autism cases and ten controls, which was at the time the largest postmortem study that had been carried out [in this area], and was one of the first studies to look at amygdala neuron numbers in any disorder.

The subject range was 10 to 44 years of age -- so [unfortunately] not into that early age range where researchers can see what's contributing to that early enlargement -- but made it possible to look at the pathology over an age range.

Researchers didn't see a difference in the volume of the amygdala from 11 to 44 years of age, or in the size of the neurons -- but they did see a reduction in the number of neurons in the autism cases relative to the controls.

So Schumann could start to put the puzzle pieces together in understanding this abnormal growth. Her group could see that [in autism, the] amygdala is larger in childhood, and there are fewer neurons in adulthood. Hypotheses:
  1. Maybe the reduction in neuron number has always been there. Maybe there wasn't sufficient neurogenesis, or the neurons didn't get to the right places during the prenatal time period, or maybe something else is contributing to early enlargement -- the growth of the dendrites or whatever it happens to be.
  2. Another possibility: there is a normal or maybe even excessive number of neurons occurring early on, contributing to that early enlargement, and there might be some kind of degenerative process later on in development and into adulthood that could contribute to the loss of neurons.
Schumann's lab is actually pursuing both of these questions.

John Morgan, one of the lab's post-docs, asked: are there disease states that might be leading or contributing to the loss of neurons in the amygdala found in adulthood?

They decided to start by looking at microglia, which are cells that are part of our normal immune system. They are activated as an immune response -- activated meaning you get more of them, they increase in numbers, and they also change their morphology: the cell body swells, it becomes less defined.

The researchers wanted to know:
  1. Is there chronic microglial activation? 
  2. Are there more microglia in these autism cases? (These are the same cases in which they found the decrease in neural number)
  3. Are the microglia cell bodies swelled, as an indication of this activated state?
  4. Are these measures related to the reduction in neuron number [indicated earlier]?
They saw an increase of 18 percent increase in the number of microglia in the whole amygdala. Microglia size also increased by 18 percent overall, though driven by three cases as most fell within the typical range -- which makes Schumann wonder in the most marked case if it represents a different phenotype, or a difference in the immune system -- she doesn't know, but she's interested in pursuing the question.

But -- they also found -- neither microglia number nor size related to neuron loss.

So to answer the question, is there chronicle microglial action? The story is complicated, as it usually is, but yes, they did see an increase in the number of microglia, and the cell bodies were swelled -- in some cases but not all. But it was not related to the reduction in neuron number -- or at least it didn't appear to be.

The take-home is that the amygdala is clearly undergoing an abnormal growth trajectory in autism, this is characterized by early enlargement, followed by a reduced neuron number later, and in some cases there appear to be enlarged microglia, but it's not related to the neural number.

For future work, Schumann's group is looking to see what other factors might explain this abnormal growth, is there a difference in the number of neurons, determine when this loss is occurring -- or has it always been reduced, what other factors might there be, are there differences in the number of glial cells besides microglia -- and is that possibly contributing to the abnormal growth trajectory.

Wednesday, May 25, 2011

Autism and Function: An Autistic Boy's Perspective

Emily Willingham

TH and I were walking today. We walk together a lot, and by "together," I mean that he is linked to me like my barnacle, hooked to my arm with his arm, adding about 30 extra pounds of downward pull to whichever of my sides he's on. In fact, I have him switch sides so that I don't end up listing permanently, like the Leaning Tower of Pisa, from all the weight.

Today, we were on just such a walk when somehow -- gee, can't imagine how -- we got on the subject of autism. The context was the difference in ability to use speech among autistic people. TH is aware that he is unlike some other autistic people in that he can talk. A lot. Sometimes with much sense and sudden insight, and other times with what seems like very little of either. He's also aware that he flaps and makes a lot of nonsense noise and grimaces, and we were talking about how everyone with autism can seem so different even if they share little bits and pieces of some of these things, and that's when he said it.

"I think that people who can talk really well and don't flap and don't have a lot of things like that but still have autism are being very 'low autism.'"

"'Low autism?'" I echoed (the irony). "What do you mean by that?"

He explained that he meant just what he said, that they are showing a low level of autism. Continuing, he elaborated his own linear version of the spectrum, in which there is a medium autism and a high autism, and the features of each. High, to him, meant difficulty with talking and a lot of flapping and grimacing and noises. These are his terms, by the way, not mine.

I was struck at the way he didn't place autism in the context of "typical" function. He wasn't talking about "high-functioning autism" and "low-functioning autism." He was talking about how much autism was there, front and center, present and accounted for, disregarding function completely. And then he surprised me even more.

"And you can be in different places on that scale," he said. "When I'm really calm and can talk, I'm on the low-autism end. But when I'm really excited and need to flap and make my noises and faces, I'm more at the medium-autism part." In other words, some days are more autism-y than others. Not less function or more function, just more or less autism.

Furthermore, his scale has no "zero." I know this because he drew it for me when we got home (see image). Its lowest setting is "super low autism." The highest appears to be "out of control with" and lacks increments entirely, a reflection, I think, of how he feels at times like that.

I'd say that this day, given that he was able to articulate all of this, was a low-autism day for him. Although when I suggested that I film him while he explained his idea, it kind of turned into more of a medium-autism day. Autism can be that way, you know?

Thus, my nine-year-old autistic son helped me today, solving a mystery I've puzzled over about why on some occasions, I can say, "Are you ready to do math?" and he'll sit right down and do 10 problems, while other times, he'll only respond, "Eeeeeeeeeeeee!" Now, I've got a lexicon to turn to -- and possibly turn on him -- when we're having one of those "Eeeeeeeee!" sorts of days.

Autism operates on a sliding scale, according to my autistic son, and not as a measure of function--because you know what? To TH, the function is always there. It's just that sometimes, intense emotions, intensely felt, like excitement or that ever-present anxiety can scale up the autism even to "out of control with." What matters to him is the autism scale, not the function scale, and I found his perspective unique -- just like his autism.


This essay was originally published on

Monday, May 23, 2011

At the Dog Park


I vacillate on the autism thing, and how it applies to N. I use it around the school, because it is a strap, a grabbing-on point, a way for people to understand my son and--very much more to the point--to justify putting forth time, effort, and especially money to help him. I use it because doctors and therapists have used it to describe him. I use it because it's the primary disability listed on his IEP. But there are so many ways in which he doesn't seem, to me, to fit on the spectrum part of the spectrum. I describe him, often, as the triangular peg who not only doesn't fit in the round hole, but doesn't look all that much like the square peg, either.

And yet.

And yet, professionals of all stripes see him on a regular basis, and talk to me about him with concern about his disabilities, or with delight over his abilities, or with awe over the way he turns the former into the latter. They never say to me, "You're a fraud. He's fine. There's nothing wrong with this kid. Get out of my office and stop wasting the taxpayers' money."

And yet, other moms of kids on the spectrum see him and smile at him and recognize him. They never say to me, "Get out of here. This kid doesn't belong with my kid. This kid isn't autistic. You're no longer welcome in our club."

And yet, when a girl from the school's Special Day Class was mainstreamed into N's classroom for one period a day last year, she was the one and only friend he had in class. When we go to a school function together, he looks shyly and somewhat longingly at the other kids in his class or grade, but ends up sidling over to that same girl and the other kids in her class, who he's gotten to know on the playground. When we go to a birthday party, he finds the one other autistic child at the event to hang on the outskirts and not-talk with, until they discover that they both don't mind being bopped over the head with a balloon, and then they spend half an hour doing that while the other kids do, you know, the actual party stuff.

That's what's always confused me. N doesn't identify as autistic, or even as special needs. He doesn't ask me about why he's different; despite the number of pull-outs and therapists and various other accommodations that the other kids clearly do not get, he never mentions being in any way unlike the rest of the children he spends his days with. He's never asked me why learning is hard for him, or why he needs speech therapy. (I've tried to bring it up many times, but he deflects, and I'm not going to force him into a conversation about it if he's not ready.) He doesn't even seem to realize that some of his behaviors are odd or unusual or babyish or even gross...even if I point them out as such. (His general response to any attempt to modify such behaviors is, "But I like it!") And yet? The kids he so often identifies with are all those things: autistic, special needs, different.

I don't get. Or, rather, I didn't.

Today, I read this amazing post about John Robison over at PLoS Blogs. It's worth taking the time to read every single word of it, truly. But it was this part of Steve Silberman's interview with John that stopped me cold, made me gasp with recognition, made me stop--for today, at least--wondering and worrying so much about the "fitting in":
I talked to Temple Grandin about this. I told her, “I’m afraid that when I talk to groups of people with really serious autistic disability, they’re going to think I’m a fake autistic person, because I can talk so well.” Temple said, “No one with autism is ever going call you a fake autistic person. People with autism are like dogs in the park — they absolutely positively know what’s a dog and what’s a cat. A German shepherd can come up to a dachshund and he will never mistake a dachshund for a cat.” And that turned out to be true for me.
So many times, I’ve seen it in myself going the other way. All these people come up to me at booksignings and stuff and I say, “Ah, I see you’re a fellow Aspergian,” and they say, “How do you know?” And I say, “You know, I don’t know.” Sometimes they’re insulted, because they worked so hard in school, and they look so good, and they have friends and stuff. They’re almost insulted that I picked it out. But I don’t always know what it is about them.
Whether he's Asperger's or PDD or even something else along the spectrum--something not quite clearly articulated in any DSM or even in my own mind--my kid knows he's a dog, and can find the other dogs to play with.

Nobody is going to kick him out of the dog park for being a chihuahua even if most of the other pups around are terriers and retrievers. I need to stop worrying about it, and just let him play.

A version of this essay was previously published on

Friday, May 20, 2011

IMFAR 2011: Dr. Eric Courchesne on the Developmental Neurobiology of Autism

IMFAR 2011 Keynote: The Developmental Neurobiology of Autism: The First Steps and the World Ahead
Eric Courchesne, UCSD Autism Center of Excellence

The following is a modified transcript of Dr. Courchesne's talk. I have not included all references to  slides he presented, and I have left out some of the researchers he thanked and technical terms he cited. Emphases in bold are mine. Any additional omissions or errors are my own.

INSAR members can listen to Dr. Courchesne's talk in its entirety via the abstract page.


IMFAR introduction: Eric Courchesne is a leader on brain structure and abnormalities in autism, and has been pursuing research into autism before most IMFAR attendees "knew what autism was." Dr. Courchesne had polio as a child, which left him unable to walk or stand. Medical intervention gave him the ability to walk without braces, and allowed him to eventually become a nationally ranked college gymnast. So, he has a personal stake in overcoming disability, and sincerely believes medical science can make a difference for kids with autism. He dedicated his IMFAR 2011 presentation to his mother.

Neurodevelopmental Studies of Autism: from MRI and fMRI, to Neurons and Gene Pathways

My talk will basically attempt to describe our little part of what we've done in looking at the neurodevelopment of autism. Imaging research has taken us from structure to functional and to what I believe are some new findings, very interesting findings on neurons and gene pathways.

We all know that autism is a neurodevelopment disorder. It begins very early in life. The first symptoms may be subtle, especially in the first year. The second year is usually when we see a variety of red flags displayed in kids who go on to develop autism.

Surprisingly enough, until just a few years ago, very little was known about the developmental neuropathology of autism. This is a well-known disorder, and yet, through most of its history, there were almost no imaging studies of the very young autistic brain. There were no functional studies. Dr. Geri Dawson's lab did some of the early developmental neurophysiological studies examining how the brain operated in three year old and four year olds with autism, but except for a few groups such as hers, there really wasn't a lot of research being done in that area.

I think it's safe to say that there is not a body of literature on the developmental neuropathology of autism. So we really don't know what the underlying neural defects are that cause this disorder. What we do know is a great deal about the adolescent and adult autistic brain, based on imaging studies and neuropathology. We know from those neuropathology studies that the amgydala in ten to forty-four year olds [with autism] shows a decreased number of neurons. We also know that the fusiform neuron numbers are reduced in older children, adolescents, and adults with autism.

In general, in adolescent and adult brains of people with autism, we see decreased amygdala neuron numbers and volume, dendritic arbors, minicolumn size.There's also often thinning of the cortex (though not all studies find this), as well as reduced thickness in the corpus callosum. We know that there is evidence of glial activation in the older autistic brain as well as molecular signals of inflammation.

This has basically led people to think that neuroinflammation has something to do with causing autism. Well, maybe it does, and maybe it doesn't. But it's hard to see how we'll know until we do lifespan or developmental studies. John Morgan has done to my mind the first (and so best) statistical and quantitative analysis of postmortem tissue, looking very precisely at parameters involving glial-neuron interactions and neuron-neuron interactions. His studies demonstrate that there is an age-related change in the autistic brain across the years from ages two to forty, that there is an increase in the relatively haphazard arrangements of neurons within the autistic frontal cortex. So, rather than a nice, orderly spatial distribution, it becomes more and more patchy, or haphazard. To my knowledge, that's the first evidence that there's an ongoing process of change in the autistic brain.

It's high time for the field to realize that we don't have a high volume of autistic brain tissue. There aren't thousands of cases, there aren't even hundreds of cases. It really comes down to a dozen or so really high quality cases with really good tissue. Those studies, even though they're small, are pinpointing fundamental underlying defects that can't be seen any other way in the autistic brain.

Wednesday, May 18, 2011

IMFAR 2011: What Parents Expect For Their Autistic Children, High School and Beyond

As Peter Bell (Autism Speaks' executive vice president for programs and services) reported at the Autism Speaks Blog,
While IMFAR is first and foremost a scientific meeting, the meeting has developed into a healthy blend of science and stakeholder perspectives.
John Elder Robison reported
This year many scientists who have family members on the spectrum proudly wore stakeholder ribbons on their name tags
One such scientist/presenter/stakeholder was Matthew J. Carey PhD, known to many as "Sullivan", who blogs at LeftBrain/RightBrain. While Matt's day-to-day research has to do with computer hardware, his avocation is writing about autism science. One area in which he excels is analyzing published papers and public datasets bearing on autism.

For the 2011 IMFAR meeting, Matt submitted an abstract on the data presented by the National Household Education Surveys Program (NHES)
The NHES surveys cover learning at all ages, from early childhood to school age through adulthood. The most recent data collection in 2007 consisted of two surveys: Parent and Family Involvement in Education and School Readiness.
Matt analyzed the data with two questions in mind:
  1. To compare the 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(s).
Keep in mind that the data collection happened in 2007 -- the oldest children in that survey were born in 1988.

The underlying NHES survey did not appear to make distinctions among students on the autism spectrum, specifically along the language dimension. What I am trying to say is that ASD students who have more age-appropriate expressive oral and written language skills may have different educational outcomes than students whose oral and written language skills are not as robust.

In looking over the abstract, two things struck me:
  • Children on the autism spectrum were nearly twice as likely to be home schooled (5.5% vs. 2.9%)
  • Over 6% of parents did not expect their ASD student to earn a high school diploma, compared tojust 0.6% of non-ASD parents .
There was another presentation by Taylor and Shattuck,The Role of Parental Expectations In Predicting Post-High School Outcomes for Youth with ASD, which was drawn from the National Longitudinal Transition Study-2 (NLTS2)

NLTS2 involves a large, nationally representative sample of students receiving special education who were ages 13 through 16 and in at least 7th grade on December 1, 2000. The oldest youth will be 26 at the time of final data collection. Statistical summaries generated from NLTS2 will generalize to students receiving special education nationally in this age group, to each of the 12 federal special education disability categories, and to each single-year age cohort.

As our children with ASD become of age, it will be interesting (a deep understatement) to see how their educational and employment outcomes change over time.

(A more complete account of Carey's research has been posted at LeftBrain/RightBrain "Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey")

Monday, May 16, 2011

IMFAR 2011: Proof of Evolution

Shannon Des Roches Rosa

As an autism parent, I have a deep interest in seeing autism research proceed toward understanding and results with as few roadblocks or distractions as possible. So, for me, one of the most notable elements of IMFAR 2011 was seeing the Autism Science Foundation and Autism Speaks working alongside each other toward common goals, in the Autism Science Foundation's tradition of "Funding Outstanding Science."

Anyone who has read my personal blog for more than a month or two knows I have been openly critical of Autism Speaks' actions. I believe they have made some questionable decisions in how they approach and portray autism -- but then so have I.

If I'm going to give myself permission to evolve, I can't very well fault them for past choices when their present direction includes wide-ranging funding of promising science, and listening to the community by broadening their support for adults with autism. I believe that, in terms of AS's science focus, they are fast evolving towards the organization I'd always hoped they could be, given their size and influence. Seeing the current results of their investment in promising science was truly heartening.

As for the cross-section of IMFAR 2011 research I encountered -- it amazed me.  But we're still in a baby steps period in terms of what the science means, e.g., Dr. Eric Courchesne's work (which I'll be summarizing for my next post) on neuron overgrowth in infants' frontal cortexes and temporal lobes could lead to future remediation of autism symptoms -- but mostly points to a need for the earliest possible identification of autism symptoms, and intensive early intervention.

IMFAR was also a week of thoughtful conversations with folks I deeply respect for their inclusiveness, ethics, and neurodiversity outlook. We generally agreed that most community members -- autistics, Aspergians, or parents of kids with autism -- want to ameliorate the challenges that accompany an autism diagnosis, wherever reasonable. For parents, friends, and relatives of kids with autism who are not neurodiversity-aware, that last phrase can be a synonym for "cure." I think such attitudes are understandable, but demonstrate a need for redoubled efforts to promote autism awareness and acceptance.

I do hope Autism Speaks' ongoing evolution continues to guide them towards the research and support of autism symptoms, needs, and challenges -- and away from the word "cure." Especially when that word that doesn't apply to people like Autism Speaks Scientific Advisory Board member John Elder Robison, who stated repeatedly that while he may be on the autism spectrum, he is not disabled. And I really would love to see Autism Speaks do active neurodiversity outreach -- hosting regional screenings of Todd Drezner's movie Loving Lampposts, for instance.

IMFAR was an unintentional festival of bluntness, though there was a difference between the general conversational directness of attendees with autism, and researchers' clinical observations coupled with clinical language. I will say that listening to many researchers' descriptions of the deficits of autism took some getting used to -- and if I was distressed as the parent of a child with autism, I can imagine the same language must have been even more off-putting to some attending autistics. But the researchers themselves showed tremendous passion and compassion for their topics, compassion frequently rooted in personal experience -- Dr. Courchesne had polio as a child and considers himself recovered, Dr. Dolmetsch is a self-described quirky guy who has a child with autism.

And I will also say that some research was personally upsetting -- not because it was offensive or flawed -- but because it appeared to be going in the right direction, but was happening too late to help intensely affected kids like my son Leo. But, it also gave me great hope for the future.

I can't recommend IMFAR highly enough to anyone who is interested in autism research. I believe community members who can participate, owe it to themselves and their loved ones to do so. As I told a friend earlier today, IMFAR blew my mind sideways, backwards, and upside down. I really hope I can repeat the experience next year, in Toronto, for IMFAR 2012.

Stay tuned for at least four more reports from IMFAR sessions I attended. Incredible stuff.

Sunday, May 15, 2011

IMFAR 2011: Intermission Teaser

From the presentation Neuropathology of the amygdala in autism
C. M. Schumann, UC Davis MIND Institute.
Here's a preview of the research we were exposed to at IMFAR, and on which I'll be reporting for the next few days if not next two weeks here at TPGA. 

I've found that being immersed in the multifold information streams at IMFAR requires a bit of post-conference downtime for processing. Until tomorrow. -SR

Friday, May 13, 2011

IMFAR 2011: Sex Differences In the Identification and Diagnosis of Autism, Asperger’s Syndrome and PDDNOS

S. Begeer
VU University, Amsterdam

Autism is a "man's disorder" But what about the "Horse Girl" and the "Rain Women"?

Some studies reports that females with autism
  • Show more cognitive impairments
  • Have worse social and communicative functioning
  • Have a higher rate of intellectual disability: Increased self-destructive behavior, more dementia
But other studies have shown that core autism symptoms do not vary by sex:
  • No increase in psychiatric comorbidity
  • Core symptoms of autism are relatively equal
What are factors in the identification of females with autism?
  • Parental expectations may be involved (higher social expectations)
  • Clinicians expectations may be involved as well
  • There is a risk of delayed or missed diagnoses in females
  • Early identification is crucial
From the abstract:
Survey data were collected in the Netherlands from 2275 individuals with ASD. Timing and procedure of diagnosis were compared for males and females with autism, Asperger’s syndrome and PDDNOS.

Among participants < 18 years of age, females with Asperger’s syndrome were identified later than males, despite parents’ report of first concern at similar ages. No delays in identification were found for individuals with ASD and PDD-NOS, or among participants ≥18 years of age.

Among children and adolescents with Asperger’s syndrome, females are diagnosed later than males, which can result in increased family stress and critical delays in treatment initiation. Strategies for changing clinician behaviour to improve recognition of ASD in females are needed.
Self-reported shortcoming: relied on self-reported data, rather than clinical observation and data collection.

International Autism Conference Comes To San Diego

San Diego's Fox 5 covered the IMFAR press conference, including an interview with Shannon Des Roches Rosa:

IMFAR 2011: Onset Patterns in Autism: Correspondence Between Home Video and Parent Report

Any omissions or errors are my own contributions. -SR

S. Ozonoff, UC Davis MIND Institute

The study was a collaborative effort between UC Davis's MIND Institute and the University of Colorado.

We usually think of autism onset in terms of two categories:
  1. Autism symptoms that appear early in life, before 1st birthday, or
  2. A child who loses previously acquired skills after the first birthday
Ozonoff's study used home videos that were coded using objective methods to see when symptoms were first apparent, and how they unfolded over time.

The study looked at two questions:
  1. Are two categories sufficient to describe onset?
  2. How do home video and parent reports correspond?
For the home video method, parents gave the researchers all home video in which child appeared, from age 6 months through the second birthday.

The researchers focused on four social/communication behaviors:
  1. Eye contact
  2. Social smiles
  3. Joint attention
  4. Language
In some cases, parent reports showed good concordance with videos regarding language loss, but much more moderate concordance with social loss. In other cases, kids didn't regress -- they just weren't making expected gains.

The reachers actually saw three primary onset trajectory models, not two:
  1. Early onset
  2. Regressive
  3. Plateau -- typical levels of social communication level off at 6 months, with no progress over time
The team used a statistical method to show how many trajectories there were, and what their shapes were.

When the statistics were reviewed, two categories appeared insufficient for describing autism onset. Three might be insufficient as well.

Parent reports were very different than video evidence, statistically. Parents were good observers and reporters of their children's current behavior, but poor reporters of kids' behaviors in past compared to present behaviors.

Resulting questions:
  1.  Can we improve parent reporting?
  2. Can we come up with other ways to report onset?
We need to make sure we are putting kids into the right group!

SR disclosure: My family participated in MIND Institute studies on autism and regression that included supplying home videos.

Thursday, May 12, 2011

IMFAR 2011: NIMH Director Tom Insel on the IACC

Tom Insel Director, NIMH
IACC update, since 2010

NIMH Director Tom Insel
IACC is congressionally mandated, via the Combating Autism Act of 2006. Legislation will sunset in September 2011, unless the legislation is reauthorized.

IACC has 23 members. It's a diverse group -- federal appointees, parents, autistic advocates, professionals.

The IACC mission is to:
  • Provide advice to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder.
  • Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations.
  • Increase public understanding of the member agencies' activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services
    Strategic plan: Concept is to accelerate research process. Want to bring everyone to the table and agree on priorities.

    Established goals in seven critical research areas

    Plan gets updated every year, has 78 objectives altogether 16 new ones in 2011.

    IACC doesn't fund research, it's an intellectual mandate. Encourages each agency and org to cooperate with the strategic plan. We try to point the field in directions it hasn't gone yet.


    NIH has been kept at flat funding since 2003, but autism has still been a growth area for research and investment.

    The Recovery Act and Strategic Plan led to: less emphasis on screening and basic biology, more on risk factors, services, and infrastructure. But recovery act money ran out in 2010, will not be renewed,

    Current budget (april 2011) led to more cuts in NIMH budget, so won't be a huge year for NIMH funding. So, looking to public/private partnerships to make up the difference.

    Recommends looking to NDAR: National Database for Autism Research, 22,400 subjects, 120,000 records shared -- and will ramp up as clinical records provide more phenotypic data.

    Insel also recommends The Next Frontier: One Mind for the Brain initiative launching later this month via Rep. Patrick Kennedy.

    We also need to put more information into supporting adults with autism.

    The question we all need to consider: How do we work together, and focus on making the research have the most impact for the people who need it?

    Can browse all the information above in detail through publications at:

    Personal note (via a question from the audience by Steve Silberman): Tom Insel also no longer uses the Low Functioning/High Functioning descriptors, since many "non verbal" folk communicate through AAC etc.

    Program slides, for more specific info (thanks to John Elder Robison for loaning his photo adapter):

    IMFAR 2011: Characterizing Cognition in Nonverbal Individuals With Autism: Innovative Assessment & Treatment

    This session was introduced by Geri Dawson, and included a number of presenters, whose work I am only summarizing briefly. Again, any omissions or errors are my doing. -SR

    Chair: Geri Dawson, Chief Science Officer for Autism Speaks

    Why a specific focus on nonverbal kids with autism? Because they're often not included in research -- such kids can be difficult to test, especially when so many evaluation paradigms include verbal testing. As a result, little is known about why some kids with autism don't develop spoken language, or even what best approaches are.

    Biggest challenge: Evaluating cognitive abilities! Lots of kids who appear to have intellectual disability do not, at least not to degree perceived.

    In 2008, Autism Speaks launched a special initiative focused on nonverbal autism, and in April 2010, NIH sponsored a workshop to address what we do know, and gaps in knowledge.

    We need understand that nonverbal individuals with autism are a variable population. We need to be thoughtful about what "nonverbal" means. There is no single set of defining characteristics for a nonverbal individual with autism, but there are three main types:
    1. Preverbal - young, newly diagnosed, or pre-intervention
    2. Non-speaking (AAC users)
    3. Non-communicative -- does not have functional communication.
    Need innovative approach to assess cognitive and communication abilities.

    Other thoughts:
    • What percent of kids with ASD are nonverbal? Estimated: 30%.
    • Age 5 is not a gatekeeper age for future verbal ability.
    • Connie Kasari: We need to figure out better ways to assess the kids who have higher functioning skills that have gone undetected.
    • Nicole Gage: What if your sensory system is somehow atypical, discordant -- and you can't tune them out? If this was happening with your visual system as well? Can't you posit that these differences can get in way of the profound developmental changes that occur in infancy and early childhood, and interfere with development in language ability, interfere with the right signals getting to the right places in the brain?
    • Geri Dawson: Nonverbal is a hard thing to define, many distinctions are arbitrary, people define it differently. Recommends seeing NIH's 2010 Workshop on Nonverbal School-Aged Children with Autism.

    April Benasich, Rutgers University

    Is the Frog Green?

    Note: study is ongoing, still seeing kids, still analyzing data. We're trying to figure out what these kids know! Many don't even sign.

    Do kids who are nonspeaking have capcity to understand spoken and written language? Lack of expressive language does not indicate lack of receptive language!

    Tried to apply info from assessing nonverbal indivduals (babies) to nonverbal individuals with autism.

    We need to look at "higher functioning" autistic kids compared to nonverbal autistic kids.


    John Connolly, McMasters University

    Innovations in Assessing Cognition in Nonverbal Children With Autism

    His previous research has been with individuals with traumatic brain injuries, in "vegetative" state, meaning primarily, no evidence of awareness of self or environment at any time.

    He is amazed by how much nonverbal autistic people get treated like people in vegetative state, in terms of assumptions regarding lack of response to external input.

    Many subjects whose testing indicate low IQ before testing were able to demonstrate greater comprehension using his much more rigorous and constrained methodologies and approaches.


    Nicole Gage, University of California, Irvine

    Developing Biomarkers of Language Impairment in Nonverbal Children With Autism: A MEG Investigation.

    She's a neurolinguist, interested in why language didn't blossom in these kids as with typical peers.

    How can we characterize auditory and language function in kids who are minimally verbal, and possibly less compliant as a result?

    Case study approach: Case-by-case basis, also included siblings discordant for autism including twins. Only included kids with idiopathic autism, not kids with PDD-NOS or Asperger's.

    Multidisciplinary investigation of the auditory system: looking at cortical structures, as relates to language outcome and brainstem pathways.

    MEG: Magnetoencephalography. MEG gets improved source localization compared to EEG. It is considered a "direct" sign of neural activity. MEG is also silent, compared to MRI, and non-invasive -- parent/caregiver can be in room with child as long as child doesn't move. Can do time, freequency domain analyses, etc. -- MEG is a very rich signal.

    Have to think about synchrony, about what's going on in the brain. Speech is the most complex signal our brain needs to decode, lots of disruption and interfering environmental stimuli. The audtiory system's highlight is its sensitvity to decoding this signal -- but this is not working as well in kids with autism, who can have disruption and asynchrony.

    Goal: use our brain measures to find and predict brain-based biomarkers of language impairment.


    Connie Kasari, UCLA

    CCNIA Intervention: Spoken and Augmented Means of Communication

    Problem: we have significant number of  kids with autism without verbal communication ability despite years of intervention. Very concerning to parents and professionals. These kids get excluded from research as mentioned previously so we know very little about them.

    Question: How do you intervene with kids older than age 5 who are still not using spoken and written language?

    Study merged two evidence-based interventions for younger language-learning kids
    • JASPER: Joint attention, symbolic play, engagement and regulation
    • EMT: Enhanced milieu treatment
    • Added in speech generating device
    Primary aim: To increase expressive language in a brief (6 mos) intervention (spoken or augmented)

    Randomized trial of 96 kids age 5 - 8 diagnosed with autism via ADOS, across three sites (Vanderbilt, UCLA, Kennedy Krieger):
    • Above 24 months in terms of nonverbal cognition
    • At least two years of intensive intervention, minimally verbal (<20 non-scipted words)
    Most kids came in with very poor play skills, didn't want to engage or have others folks play with their toys.

    75% of the kids were responders in first three months/first phase. What does first-phase responder means? Novel grouped words, Socially communicative utterances.

    We're hoping to figure out why kids do and do not respond. The kids who don't respond tend to have higher rates of compulsive behavior.

    The treatment can work, in a very short time frame: Three months.

    Likely important moderators for success haven't been ID'd just yet, but repetitive behaviors seem to be one factor. We'll know more in a year, hopefully.

    Wednesday, May 11, 2011

    IMFAR 2011 Press Conference

    Today's press conference was incredibly rewarding -- and had an information density not generally found in nature. Any errors or omissions in the skin-of-my-teeth transcript below are mine entirely. -SR

    More info:

    IMFAR sessions and panels [PDF]
    The Autism Science Foundation live-tweeted the press conference: @AutismScienceFD
    LeftBrain/RightBrain: IMFAR 2011: The Press Conference (Part 1)

    • David Amaral, Ph.D., President, the International Society for Autism Research
    • Eric Courchesne, Ph.D., UCSD
    • Antonio Hardan, M.D., Stanford University School of Medicine
    • David Mandell, Sc.D., Chairman of IMFAR Program Committee
    • Irva Hertz-Picciotto, Ph.D., UC Davis


    David Amaral

    MIND Institute, INSAR president (INSAR is the host of IMFAR).

    IMFAR was first held in San Diego in 2001, with 250 attendees. Expecting 2,000 attendees this year.

    Autism is an incredibly complex, wide range disorder that affects 1% of children. List of co-morbid disorders is long and debilitating. Still little certainty as to what causes autism, which is why research is critical.

    INSAR is aware of the public's interest in everything autism, and decided two year ago to establish a public relations committee to communicate with the press, and the public.

    The science we'll be highlighting now is just a conference highlight. We'll be touching on a variety of topics: genetics, neuroscience: connectivity, imaging, chemical pathways etc. Also a variety of studies on environmental factors, and the impact on family life of having a child.

    Not every study has gone through peer review, but idea is to communicate passion and ideas in the field.

    Eric Courchesne

    What are the connections behind autism? We know that the first warning signs are language, communications. Frontal cortex networks, fibers, are very slow to mature, and convey important information for highest functions: social understanding, language and communication. No studies have looked at these large bundles that extend from one portion of the brain to another.

    We studied 84 toddlers with confirmed ASD and followed them longitudinally. 54 typical kids as well.

    MMIL at UCSD was used, neuroimaging facility, mapping tracts within the brain.

    Remarkable and striking differences and age related changes in these tracts/areas of the brain: in some, but not at all in others. One area connects frontal and temporal tracts, which interconnect, and allow complex functions in frontal cortex to take place. Another affects language and communication functions. Another affects ability to decode semantic meeting - pragmatics. Another area connects with the limbic system, including amygdala. Another area connects left and right sides of frontal cortex to decode social meeting.

    In some areas, 1 - 2 year olds with autism have a premature acceleration, overdevelopment of their fiber growth in areas that underly key areas of autism, but when they hit age 3/4 have slowed growth in those same areas. The overabundance of connection in the fiber tracts, which might mean those tracts are having problems differentiating, lead to dysfunctional connectivity and interfering with further development and specialization -- leading to decline in function/autism.

    Implication: the sooner a child's autism is identified, and the earlier a child receives treatment -- learning may guide further development of these axons.

    Antonio Hardin

    N-Acetylcysteine (NAC): it's an over the counter medication used currently by autism families -- does any scientific evidence justify its use?

    No med currently targets core deficits of autism -- social and language deficits, repetitive behaviors. Looking for treatment with fewer side effects.

    Available agents target behaviors -- and are risky: weight gain, lethargy, repetitive movement.

    NAC is a glutamatergic modulator, and an antioxidant.

    Randomized placebo-controlled 12 week pilot trial - gold standard study.

    Used aberrant behavior checklist with irritability subscale.

    NAC was able to decrease disruptive behaviors and irritability compared to placebo (based on sample of 29 kids).

    Very limited side effects, mostly nausea and diarrhea.

    Very preliminary trial, need large study to confirm validity. So not a recommendation.

    Irva Hertz-Piccotto, MIND Institutde

    Three studies: Maternal Diabetes, Prenatal Influenza/Fever, Caesarean births

    Papers are not yet peer reviewed, but indicate avenues for further research.

    CHARGE: Childhoold Autism Risks from Genetics and the Enviornent. First comprehensive study looking at environmental factors and autism. Casting a wide net.

    CHARGE includes clinical confirmation/screening for autism diagnoses in all subjects -- or lack thereof in control group. Also large study size.

    Focused on factors that are modifiable, possible risk and intervention avenues.

    1) Prenatal influenza/fever and risk of autism: Maternally reported fever during pregnancy associated with over twofold higher risk of ASD in the child.

    Strongest risk was for 1st and 2nd trimester fever.

    Maternally-mediated inflammation might be part of mechanistic pathway leading to autism. Some parallels in animal studies as well. Factor appears to be the maternal response to the infection rather than the microbe.

    2) Maternal Diabetes and related conditions in autumn and developmental delays (Retrospective study, would like to do prospective study)

    Included: Type 2 and gestational diabetes, hypertension, maternal obesity.

    If the mother has at least one of these condition during pregnancy, 60% increased risk for autism, 150% for developmental delay.

    Maternal diabetes is also associated with poorer expressive language.

    Further evidence that a metabolic disruption or inflammatory pathways may be a prenatal autism factor.

    3) Mode of Delivery: Caesarean birth and Autism Spectrum Disorder.

    Elevated in non-elective C-sections, but when adjusted for underlying indications, was no longer the case. Meaning: although risk for ASD is increased, may not be the surgery itself -- underlying reasons for C-section (pre-eclampsia, breech, placental insufficiency, etc.) may be the factor.

    David Mandell

    1) Parental labor market participation

    Most of the attention on the cost is focused on the direct cost: Education, and health care. 24 States have passed autism insurance mandates since 2008, which insurance companies are fighting.

    Other half of story: indirect costs to families: Out of pocket, yes, but also changes to the family.

    Medical expenditures panel survey was used; asks parents about their children's health and health care, as well as parents' employment.

    Was there a difference in labor market participation? Only among mothers. Mothers of kids with autism, 62% employed compared to 76% in kids with no health limitations. So, some job market participation suppression.

    How does this affect family income? A large reduction, 27% or $17K.

    Was adjusted for age, education, ethnicity, US region, and family income.

    So, why?

    Is raising a kid with autism more challenging or disruptive? We hope to look at that in further studies.

    He thinks that families of kids with autism don't have a care system the way other families do. Pathway through health care system is unclear for autism, unlike families of kids with clear medical condition whose path is very clear. So often mother drops out to become "case manager."

    2) Inclusion and educational placement. When segregated, social opportunities for peer modeling are limited. Strong pockets of social ability may languish due to focus on treating deficits associated with autism.

    In the classroom, teacher felt they could use more resources, especially aides. The teachers themselves felt prepared. But felt the kids came to the classrooms unprepared to be included in a general education class.

    So, teachers are putting the burden for inclusion on the child, rather than prepping as well as they could themselves.

    So for intervention for increasing inclusion, need to clarify, put onus on teachers for creating good fit for that child, working with that child in that setting so the child will be ready to learn.


    Questions from audience:

    Appears there is more evidence that autism factors happen in utero. Doesn't this provide more evidence that autism-vaccine link is unlikely?

    Every little study adds to larger body of science that draws upon different studies. Each brings different, convergent evidence of etiology of autism and ways we can intervene. We are very much in early stages of understanding autism. Autism science was set back 20 years, first by refrigerator mother beliefs, so we are farther behind in understanding than we could be.

    Not relevant to vaccine question because autism is a mulit-factorial disorder. Multifactorial within each child! We can't preclude post-natal factors as well.

    Lots of work will be presented on brain development and function, in IMFAR: have confirmed this precocious brain growth. Our twist is that in our 200 child cohort, most associated with kids with regressive form of autism -- the interesting thing is that when we look at head circumference, started at 4 - 6 months of life. So behavioral regression took place at 18 months, brain changes took place at 4 - 6 months.

    Very early events point to later dysregulation in autism brain functions.

    Nature magazine
    What is the hypothesis of how neuron overgrowth leads to autism?

    There is no evidence that speaks one way or the other to the underlying cause of early brain overgrowth. There is no developmental neuropathology of autism. In the absence of firm knowledge, this disorder will remain a mystery for a long time. Suggested that is due to overgrowth of neurons, meaning that it's a prenatal event.

    Autistic child begins life with between 50 to 100% more neurons than typical child. Paring down those neurons and axons to number needed for typical function is a big task. We need more hard core biology research to study this, too few people are looking into this. We need more labs, more intense work.

     Myth that everything that has to do with autism has increased over last few decades. Part of increase has been to better diagnosis, DSM definition changes. We know that there were undiagnosed cases in past.

    Simons Foundation
    Curious about your opinions on Korea prevalence study. Would we get similar results in US?

    Missing study details did not allow me to evaluate methodologies, so can't comment.

    TPGA Will Be Blogging IMFAR 2011

    TPGA Editor Shannon Des Roches Rosa will be at IMFAR, the International Meeting for Autism Research, for the next four days. She'll be blogging as much of the conference as she can, right here at The Thinking Person's Guide to Autism, starting with today's 11 AM PST press conference -- so stay tuned!

    The number of IMFAR sessions and panels [PDF] is incredible. If you want to make a case for a specific session Shannon should report on, leave a comment and she'll do her best.

    Thanks again to the Autism Science Foundation for the travel grant that made Shannon's attendance possible. And if you're actually at IMFAR, do find our roving editor and say hello, or DM her on Twitter: @shannonrosa.

    Monday, May 9, 2011

    Random Acts of Pickles

    Patty Porch

    Last night, as I lay awake staring at the ceiling, I realized that it has been exactly a year since Danny was diagnosed with high functioning autism. I am surprised at how quickly the time has passed, since hearing the diagnosis made me feel like the world was ending.

    I remember how it felt like being punched in the stomach when the doctor said that no, Danny did not have PDD-NOS, but rather autism.

    Autism. The word I had been dreading.

    My sister came with me for that diagnosis and she held my hand and vainly tried to hold back her tears. She wasn't surprised by the verdict -- I don't think anyone really was -- but that didn't make it any easier for either of us to swallow.

    I felt strangely defensive and protective of Danny. All I wanted to do was put my arms around him (though he probably wouldn't have let me) and shield him from the cold, hard, dismal place that the world had suddenly become. Though I am sure he had no idea what the doctor was talking about, I wanted to make things all better for him. I wanted to give him treats and shower him with love.

    Instead, we took him to Subway for lunch, where Danny gleefully pronounced to my sister that he loved pickles. The worker making our sandwiches must have heard him, because as I was paying, she said to me with a smile on her face, "I added some extra pickles to your son's sandwich, because I heard that he liked them."

    Though my sister had to fight back the tears in the doctor's office, I had been strangely calm and composed. But when that worker performed that tiny act of kindness for my son, I could barely stop myself from bursting into tears. I'm sure she wondered why I thanked her so sincerely.

    What she didn't know, though, was that somehow, she had given me a small gift, a little bit of hope to cling to, that maybe, just maybe there will be other people in this world who will treat my son with kindness. That not everyone out there is cruel to those who don't necessarily fit in. That maybe things would be okay.

    I don't exactly know why, but I still tear up at the memory. Maybe it was just that after all the clinical autism-speak by the doctor, it gave me comfort to have Danny treated like a little boy, rather than just a diagnosis, a statistic.

    To this day, I appreciate the people who are kind to my boy, the ones who see him as he really his, the ones who truly accept him. I cherish the times when a child or adult says something nice about him or when they reach out to him. And I am still surprised when these acts occur, even though they happen pretty regularly.

    It's not that I think Danny is unlikable; I know he is charming and funny and delightful. Still, I also know from experience that the world is populated with people who mock differences. People who are mean to those who don't fit the world's definition of "normal." And I am terrified of the day when someone like that hurts my little boy's feelings.

    I am hoping that the majority of people he comes in contact with are like that Subway worker, people who are regularly kind to everyone, no matter how different they may be. And I suppose I will need to let go a bit more; no parent can shield her child from every pain or disappointment, no matter how much she would like to.

    After all, what this past year -- the Year of the Diagnosis -- has taught me is that Danny's pretty tough. He regularly stands up for other kids with no worry of how he will be treated. He's passionate about seeing justice served and is much more resilient than I give him credit for.

    So the world didn't stop for me or for Danny that sunny January afternoon last year. In fact, it was only just beginning.

    Friday, May 6, 2011

    Say Yes! to Summer Camp

    Chris Pierce is the Director of Via West, part of Via Services. It’s an organization over half a century old that provides early intervention services in a clinic setting, and offers a camp experience to participants ages five and up, including people in their 70s and 80s, at their Via West campus in the Santa Cruz mountains, just a few minutes drive from the heart of Silicon Valley. The client needs range from autism, to mild physical or cognitive impairments to those with more significant mobility issues and medical concerns.

    Chris how did you come to be a camp director and why do you think camp is so important?

    It was an integral part of my personal child hood. My father was a founder of an adult special needs program back at the camp he started outside of Chicago, Illinois. It’s been in my DNA from day one. I was also a camper starting at about nine years old, and then worked at camp as early as 13 or 14. I can honestly say it’s been a part of my life since my earliest memories.

    My career started with third largest camp in the Salvation Army structure (The Salvation army is very comparable in number of camps to the YMCA).  From there I was recruited to a camp outside of Colorado and I was there for 7 almost 8 years. Then I moved on to be the Group Executive Director for the YMCA of Greater Seattle, and managed two resident camps, the primary being Camp Orkila, located on Orcas Island in the Puget Sound, which saw more than 22,000 participants a year.

    What is the biggest difference you see, or is there a difference between a camp that caters to special needs versus a typical summer camp?

    In the past where I may have said that camping is really powerful and developmentally sound for the camper, in this situation what I’ve noticed, is that special needs camping programs like this, are as beneficial for the child, teen or adult, as it is for the parent or caregiver. Obviously the real winner is the participant, but I also see very strong improvement in the health and welfare of the parents and caregivers that are able to let go.

    Those caregivers can go, and spend time with their significant other or go fishing, or go to a movie. I asked one mom, “Why do you choose our camp?” And she answered, “So I can take one hot bath a year.” Well, I think moms deserve more than one hot bath a year. In this situation as much as it’s always been beneficial for the campers and the parents before, at this point I think it is extraordinarily beneficial for both parties.

    We’ve talked a bit about how hard it can be for a parent or caregiver of someone with extra needs to let go. It was very hard to believe that anyone could care for my loved one with the same level of care that I can. What do you do at the Via West campus to assuage those fears and make it less scary?

    First of all, I want to say, it is scary because it is scary. As a parent myself, I know we are making decisions: what’s the best car seat? what’s the safest bottle? is it glass or plastic? We cover up outlets and we do childproofing. Then, when you consider a child, teen or adult with special needs, it amplifies everything. In many cases there is a tremendous level of personal care that goes into working with an adult or child with special needs, and there is the question of how will that care be duplicated anywhere but at home, and I think that’s a really relevant question.

    The reason we have done so well over the last 55 nearly 60 years, is that we recognize that. And while we know we can never be exactly like home, we have clients who have been coming for 30 years, and when you ask them why, they say that they feel like it is their home away from home.

    And so there are things that we do here: We hire quality skilled staff, and we really train that staff. We also have a phenomenal nursing team that can address those issues, and some of our nurses are also parents of children with special needs.

    We do our best to be a mirror image of the home in this outdoor setting. Unlike other camp experiences where you have homesick kids go home, I have yet to see one homesick child since I’ve been here at the Via West campus or heard of a child who left because it just didn’t work out. If anything, I see participants crying or acting out because they don’t want to go home.

    So I think the fear lies within us as parents. That’s why we encourage caregivers to visit our facility in advance. We’re open all the time. We love to show parents, and let them experience our property, see what we do, meet our team and I would encourage anyone who is doing this for the first time to do.

    I keep hearing “team”, “staff”, what do you look for in those candidates?

    schoolers that we put through a training throughout the year. They volunteer and are paired with a counselor with more experience. They are vetted, and have a trial period. We basically have an in-house leadership development program. Probably 70% of our staff come through that vehicle, working respite weekends, side-by-side with experienced staff. Then there’s interviewing. And we do thorough background checks and finger printing.

    But what we do our best to determine are those other qualities. At the end of the day it’s the true care for an individual, so there’s care, and we’re looking for personality, and the flexibility, the nurturing, and the ability to say “It’s okay to get dirty. We’re going to have fun.” It’s an outdoor setting, and we really see our clients open up out here. We’re trying to knock down some of those barriers and the right staff that knows how to balance all of those things.

    Are those security checks standard practice?

    We do Live Scan and background checks, and while it’s not necessarily common, it’s becoming more standard at other places.

    What about other certifications? CPR, and other first aid training?

    All of our staff are CPR certified and a lot of our staff have received first responder certification. The foundation here is that we’re accredited with American Camp Association. People may hear it, and if they’re not familiar with that means they don’t know the high standards. That folder is 8-10 inches thick, with 2-3 mandatory standards on each page. You must show proven evidence that you are meeting those standards, like those background checks and finger printing. That’s done every two years. We did our certification last year with close to 100% compliance.

    What are some things to look for that make a great camp?
    • Great staff that is a part of the fabric of that camp
    • Quality staff that is on-board and familiar with the program
    • Camps that are accredited
    • Safety, both safety measures that are taken and emergency procedures and how they are trained to handle emergencies.
    • History, longevity. How long has the camp been around?
    • Strong, thought-out program outcomes. What are we teaching? What are we doing? and how does it correspond with the participants’ interests?
    If you have a participant who is really interested in arts and crafts, you’re not just looking for cutouts and construction paper, but a strong, well-thought out curriculum. It’s critical here at Via West. We’re not just teaching, arts and crafts, we’re teaching social skills and independence skills. What we’re doing dives much deeper. It’s really a partnership between us and the parent or caregiver. We evaluate and have a dialogue prior to coming to our campus, during the time they’re here and after there’s an evaluation. Even if they’ve been coming for 30 years, each year we ask, what is it that we can do to help improve that person's experience? and I think that’s why we’ve had those same clients coming year after year.

    What would be some red flags, or some indicators of a bad camp?

    It would be hard to say that any camp is really bad, but you have to use some of that common sense. I’m assuming that a parent would see that a day camp at a movie theatre is really kids sitting in seats in a theatre, and is that how we want to define the word camp? If I don’t see experience, certified, skilled staff, then I start to say to myself, “This is someone using the word camp and it’s not really camp, and maybe I have other choices.” Same logic that we apply to other choices, when we choose services: Do I want to do business with someone who is a skilled craftsman or an apprentice? Do I want a camp that is a master craftsman experience?

    Can quality staff overcome facilities that are lacking?

    I think it can. In our world facilities are very important, and it’s great that here, our lodges are brand new, fully accessible, and were designed for special needs, other camp programs, and it’s not the end of the world, but the facilities they are using are not designed for children, teens and adults with special needs. A great staff can overcome a lot, and I tend not to get as hung up on it, but it’s really nice to have wonderful facilities, like our pool has “zero entry”, those kind of things.

    What about special safety precautions? For example, one of the things I love about Via West is that there’s a fence!

    There is a fence! We’re the only facility I know of that has a fence enclosing the property. The moment that last parent pulls out we have that gate closed, which may sound dramatic, but if you are the parent or a caregiver of a child, teen or adult…it makes sense to you. We also have a full time nurse, and a nursing staff in house at all times. Other camps take liberties with this; they might have an EMT, or certifications but they’re not truly an RN with experience working with this population.

    We only staff 1:1 or 1:3 and never go beyond that, and we have multiple levels of supervision lodge leaders, unit leaders, counselors. And we hire specific people for program areas in which they are skilled. And we maintain those roles: our counselors are counselors, and program staff is program staff.
    That goes back to a master craftsman ability versus an apprentice

    How have the cuts from the State budget hurt camps? Who supports the camp?

    It has been hard, for everyone, but we are getting some funding. We all recognize the situation; I understand the realities of these economics first hand. We know that families are having to make difficult choices and we are watching how our state is reacting. This is where tenure and reputation in the community help us a lot. We have some wonderful organizations that continue to support us. As we speaking I can hear buzz saws from the construction team who is working on the lodge pro bono.

    And other organizations are out there who want to help to send children, adults and teens for a summer experience, when they otherwise might not be able to afford that experience. And this is where parents struggle, thinking that help, that it’s for someone else, “not for me.” We do have more families in the middle class asking for help and we are encouraging those people to ask for help.

    If it’s a matter of not having you child go to camp, then pursue that help, and in our case, we know families will return the generosity in spades. So much of our funding comes from our Bridge the Gap campaign, with families and kids, and adult participants chipping in a little when they have those extra dollars to give the gift of a summer experience to someone else.

    Times have been tough, but it is worth asking, because it’s important; this experience is important developmentally for the participant, and it's beneficial to those parents and caregivers too.

    It’s the sixth year my son will be going to Via West campus for a week during the summer. Those days of happy playing in the woods will be, for the most part, funded by his grandparents who have found a way to give my son exactly what he wants for Christmas, and it always fits perfectly. If you are interested in Via West, please visit or visit their Facebook page. There are still spaces left in both the adult and youth summer sessions, which run June, July and August. I am also happy to answer any specific questions. -Jennifer

    Wednesday, May 4, 2011

    Motivation, Middle School, and iPad Cool

    Elaine Park
    Our house is frequently really loud, as my seventh grade son, Drew*, races his long fingers at break-neck speed and top volume, up and down the piano, pounding out the Imperial March from Star Wars or some original composition of his own. His fingers are fast and strong, dexterous and coordinated. They are equally skilled at piecing together intricate creations out of his world-class Lego collection.

    But because of a neurological quirk, this same child can’t tie his own shoes and has difficulty writing with a pencil or pen. He has a lot to say and wants to share it, but the frustration of handwriting often reduces him to despair, and is a frequent problem when it comes to completing language arts assignments. Like many parents of a child on the autism spectrum, I hope this can be resolved by his learning to type. Once Drew has mastered the keyboard, I believe the job of writing will be much less painful for him. It will free up his brain to concentrate on expressing himself instead of the mechanics of wrangling a pencil. For quite a while, I have even had thoughts of equipping him with a laptop for school. But since April 2010, I have dreamed of sending him to school with his own iPad.
    Luckily the inclusion specialist at his school, Alice Gold, is not only on the same mental track, but is way ahead of me.

    The phone rings a lot in Alice Gold’s office. It could be that a child is out of control in a classroom, or a parent is calling because a daughter can’t remember to bring her homework home. Or it's a son who spends his recesses all alone on the playground because he can’t make friends, or any number of other professionals who need to confer with her. The front office has a question.

    All of this activity is the daily bustle of an innovative inclusion program in a Bay Area elementary school that keeps children, like Drew, with Asperger’s or with high-functioning autism in the general education classroom. An aide accompanies them for part of their day, but otherwise they function independently. While some struggle with learning issues such as spelling or math, for the most part they do well-enough academically. Much of the focus of the program is helping students learn new coping and social skills so they can fully participate in their classrooms and on the playground at recess and lunch. The program is anchored on the belief that behavior is inherently a form of communication that expresses everything from happiness, to fear, and panic. When a student is having problems, staff focuses on discovering the triggers, and finding solutions to keep the student on track. Helping teachers and aides learn how to preempt meltdowns, redirect unhelpful reactions, and restore calm, is a major component of the support provided by the program.

    For younger children providing this support can be relatively simple. Even though they may have intense problems with emotional and behavioral control, parents are often unconcerned about the extra help those children get whether it’s a classroom aide, a pullout class, or an assistive technology device for writing, like an Alpha Smart. But as children move into the middle school years, where it is social death to stand out, especially in a way that looks like a weakness, it gets harder for students to accept their support systems. Older kids can be less compliant, as well, as they start heading into the years of adolescent rebellion. Finding ways to help them, and motivating them to use the help available to them, can become a more challenging proposition.

    It is a common axiom that motivation is what it’s all about when it comes to shaping behavior, and  a lot of Ms. Gold’s day is spent figuring just exactly how to motivate her kids, big and small. She frequently uses reward systems for desired behavior, that range from choosing a toy out of a treasure box at the end of the day, to earning marbles that can be redeemed at a certain point for a special prize. Drew gets tickets that can be turned in daily for pieces of Lego from a kit that builds a small space or land vehicle. Part of the agreement is that he gets to bring his creation home once it’s finished to join the growing fleet of wheeled and winged Lego parked around our house.

    For the last five months, since our school district’s special education PTA gave her a grant to buy it, Ms. Gold has increasingly been using an iPad as an all-purpose behavior training tool. At its simplest, the iPad is a highly effective motivator in its own right. Some time spent playing a game on the iPad can be a gratifying reward for a student who completes a task or makes it through the day without running out of the classroom or hiding under his desk. For older students, who have grown out of their love of small plastic toys, or are immune to the allure of Lego, access to the iPad is a compelling treat they are willing to work toward.

    The iPad became an invaluable tool for Ms. Gold pretty much right out the box, without taking up a lot of her short supply of time learning how to implement it. Its image-based interface fits in well with the strong visual skills most kids on the autism spectrum possess. The touch screen technology is easily manipulated and makes intuitive sense to pretty much anybody. There is virtually no frustrating learning curve. It is pleasurable to use; as the ads point out, it feels like "magic." And for kids who are aware of pop culture around them- it is unequivocally cool.

    For kids on the spectrum, being cool can be a rare experience, and Ms. Gold is capitalizing on this to help her students share social experiences with other students in their classes. She regularly holds a group that allows kids in the program to bring a classmate to play in the safety of her office during lunch recess. The chance to play on a coveted iPad makes this invitation rejection-proof and gives the hosting child a valuable opportunity to build a friendship with a peer.

    Making friends is an important skill for kids on the autism spectrum to learn, as is using pragmatic language – the language of participation – starting with how to start and hold a conversation with another person, i.e. a real dialogue and not a monologue about Pok√©mon, and progressing to such things as maneuvering through a rapid exchange of insults, i.e. normal preteen-boy friendly chit-chat. As part of the inclusion program, my son has two social skills classes per week, facilitated by Ms. Gold and Sandra James, the school’s speech therapist. During these classes, pragmatic language, and the social behavior and thinking that go with it, get a lot of attention.

    Game play is often Ms Gold’s tool of choice for helping students learn key social skills such as waiting for your turn, negotiating, winning and losing gracefully, and controlling impulses. Here again, Ms. Gold has found the iPad to be useful. As she says, “Instead of having to find storage space for 10 or 20 board game boxes, I can just use the iPad. Plus, parts don’t get lost. Can you imagine what it’s like for our kids to get a game set up and discover you are missing a piece?” Well, yes I can, from some (not-so-pleasant) experience in this area. I can also understand how stopping to help a child through the agony of not being able to play a game properly, or with a favorite game piece, can be a frustrating delay for the other kids in the group and eats into precious time carved out of their busy academic day to work on their social skills curriculum.

    A big part of this curriculum involves playing strategy games. These games are especially useful for helping students hone their skills in perspective taking, which is so important to being a good friend, teammate, or class group member. Predicting and respecting the thoughts and feelings others can be extremely challenging for these children. Ms. Gold and Ms. James use games that are structured around anticipating another player’s move, or counter move, to give students practice in putting themselves in someone else’s head. The games also help students work on executive function skills such as organizing and planning, by requiring them to plot out moves far ahead in order to win, or at least not come in last. Game apps on the iPad, with their visual nature, are well suited for these exercises as many of the students are gifted visual thinkers. The iPad allows them to devote more of their brain power to strategizing than they might otherwise be able to with word- or number-based games. The virtual game pieces are also more easily manipulated than those of a physical game, which is helpful for students with poor motor control.

    Of course the downside of a game that involves that much strategy to win is that you are also at the receiving end of someone else’s plotting, which can lead to all your best-laid plans being crushed. Having your brilliant strategy thwarted by another player brings in another important social skill the students need to practice – coping with frustration and disappointment. For many of Ms. Gold’s students being blocked from doing what they want to do is excruciating. Game playing during social skills classes gives her students a safe venue for working through and building tolerance to the uncomfortable sensations, both emotional and physical, this experience generates.

    In some ways, the iPad makes all of these tasks more demanding and at the same time more desirable. Understanding that someone else wants a turn as much as you do gets a boot-camp level workout when the turn taking involves an object of craving, as the iPad is for most of us. On the other hand, the sensual nature of the iPad, plus its cool factor, deliver the high-level of motivation these students need to take on the brute force work of learning a skill set that is supposed to come instinctively. It can be downright painful, even when it’s a game, to experience frustration, rage, and panic while reshaping the most fundamental aspects of your response to the world. A tool that is fun to use and makes you feel good while you’re at it, goes a long way in helping these students find the strength and resilience they need to persevere in working toward their so-important goals.

    The iPad has been such a useful device in so many of the program’s areas of focus, that Ms. Gold is now seeking out grant opportunities to buy several more units for the program. She is also hoping for an expansion in apps she can use. Many of the games that would appeal to her older kids are inappropriate because of violence, and most education apps are just too simple. Ms. Gold is looking forward to the day when developers create apps that can be used in a school setting by middle school students. “I’m waiting for the spelling apps that would help a sixth grader,” she says, “Or apps that let an eighth grader create a social story about being one of the only boys in the class who hasn’t their voice deepen yet. Or how to talk to a girl!”


    The crashing crescendo is fading, Darth Vader has moved on to be evil somewhere else, and Drew is now absorbed in playing with Lego before settling down to his homework. This afternoon he will be using my laptop to write a five-paragraph essay. He has been perfecting his typing at school with Ms. Gold, using a keyboard accessory for the iPad. Whereas he used to strongly resist typing instruction programs, he is now more than eager to practice on the iPad. As Drew says, “It’s more fun and less boring.” After completing each session, he is immediately rewarded with some game time -- his current favorite is checkers -- which makes practicing even more palatable. Improved typing skills have made him more comfortable with using an Alpha Smart in his language arts class, and in turn his composition skills are improving and he is starting to have fun with his assignments. And equally wonderful for me, this incentive plan doesn’t bring a single piece of Lego into our house.

    *Names have been changed to preserve student privacy.

    List of useful apps 
    • Math: Freddy Fraction, MathBoard, Fraction Basics, NumberLines
    • Strategy games: Blokus, HD Jewel Trader, CityStory, TradeNations
    • Organization: UnblockMe
    • Typing apps: TapTyping, TypingClass
    • Spelling: Word Scramble, Spelit Rite, Textropolis, Boggle, Word Abacus
    • Language Arts: Sentence Builder, Dragon Dictation, Word Web Dictionary
    School Inclusion Program 
    • Started in 2004 as a special inclusion program serving kids from kindergarten to eighth grade with an Asperger’s or autism diagnosis.
    • Provides aide support, IEP development and management, pull-out social skills classes, support for general education teachers, and mixed social groups with neurotypical peers.
    • Managed by an inclusion specialist with training in Autism Spectrum Disorders.
    • Supported by district behavior specialist.