Saturday, May 14, 2011

Sound bites – Autism tidbits from IMFAR 201

There is a lot of talk about the need for therapies for adults with autism.  A review of emerging adolescent therapies suggests that many can be applied to adults with minimal adaption.  Testing/validating what we have will be a lot less costly than developing something new.

Stem cell research may ultimately hold a key to autism, as we learn to grow brain sections of mice in the lab.  That skill may translate to humans within a decade.

More and more, scientists agree that autism is the result of genetic predisposition and a trigger.  Many hoped the “trigger” was a simple chemical like mercury, but we are realizing there are both environmental and disease triggers.  Unfortunately, knowing they are there does not make them any easier to find.  Identifying pathways into autism for a large part of our population remains an elusive goal.

One of the things that pleased me most at this year’s IMFAR conference was the way that advocates and journalists who were formerly opponents are finally coming together and finding common ground.  As Thinking Person’s Guide to Autism editor Shannon Rosa said, science doesn’t have a hidden agenda . . .

This year’s Science Competition drew over 100 technical and engineering students to develop tools to help people with communication disabilities.  For me, the most important take-away was not the entries themselves but the realization that we have so much to gain by drawing technical people from other fields, like industrial design and computer science into autism research. 

For some time we have known that that therapies like ABA teach behaviors, not feelings.  For example, we (autistic people) can learn to read a face and realize, “he’s happy,” but that logical knowledge does not often translate to us experiencing the feeling.  At this year’s IMFAR Susan Bookheimer of UCLA spent quite a bit of time showing me what imaging studies are teaching us about how we may soon help autistic people feel that happy message and thereby feel happy themselves.  That will represent a quantum leap in the power and effectiveness of therapy.

I’ve heard comments about “the rolling walk of autistic people” before.  This year I saw results of a study from the University of Fairfield that actually quantified differences in gaits between autistic and NT people.  Why do we walk in a sawtooth pattern where NT people walk in a straight line?  The researcher had some ideas, but the fact is, why remains a mystery.

For years people have looked at nonverbal people (autistic or otherwise) and wondered . . . what’s going inside their brains?  If a person can’t talk, they can’t take a conventional IQ test, and rightly or wrongly, many have been presumed intellectually disabled for lack of evidence to the contrary.  Today, researchers are using both high precision EEG and fMRI imaging to measure brain patterns in response to stimuli.  For example, when a person sees a cat and hears the word cat there is one characteristic pattern of activity.  When the person sees a cat and hears dog, the mismatch causes a different activation.   We can measure those responses, even in people who don’t talk, and thereby gain insight into how much they are perceiving and thinking, and how fast.  Understanding is the precursor to therapy.

This year many scientists who have family members on the spectrum proudly wore stakeholder ribbons on their name tags.  At the stakeholder lunch, we discussed the balance between funding community services and funding science.  Without science, all we have to care for the disabled is faith and compassion.  The addition of science-based medicine is what’s taken us from life in the Middle Ages to where we are today.  Science provides the foundation to make community and family services work better.   That’s why we need it.

When I spoke at the luncheon yesterday, I reminded people that we are all sitting here in safety, but in the middle of our country, one hundred million pounds of water are flowing past Red River Landing on the Mississippi River every single second, and the rate is rising still.  That flood could cause the loss of the Old River Control Structure, which is what keeps the Mississippi from changing course and flowing to the Gulf at Morgan City instead of New Orleans.  If that happens as a result of this historic flood (already greater than any we’ve seen in 80 years) our country could be facing the worst natural disaster in its history. 

If you’re a praying person, now is the time to pray for all those people in the Mississippi floodplain.  As much as I believe in science and engineering, if I had to lay money on the Army Corp of Engineers or Nature, I’d have to choose nature. 

Why Nature?  In the world of autism, the brain nature has given us provides the most complex puzzle man has ever attempted to solve.  Out on the river, this flood shows once again how all our science and technology sometimes fades to insignificance before the natural world.  Yet we go forward with faith that science will bring us the solutions we need, both on the river and in our heads.

On a personal note, I was pleased to see grad students and researchers whose work I have supported through my participation in review boards bringing the fruits of their work to IMFAR.  It made me feel like I had a small part in the collective success of our group, and that feels good.

I was also thrilled to see that Alex Plank (a young man with Asperger’s) was filming the conference and he’ll be sharing it soon on the wrong Planet website and elsewhere. 

In closing I’d like to thank all the friends I’ve made in this community, and also the folks at INSAR and Autism Speaks, who made it possible for me to attend this conference.  I’ll see you next year in Toronto!

John Elder Robison
Author of Be Different (2011) and Look Me in the Eye (2007)

Asperger's Autism and PDD-NOS. . . Is there a difference?

Yesterday I listened to a very interesting talk by Catherine Lord, one of the creators of the ADOS test.  ADOS is the “gold standard” in the world of autism diagnosis, and she's a leading figure in the world of autism testing and evaluation, so I jumped at the chance to hear her thoughts on where we're headed in that regard.

People who receive an autism diagnosis are told they have one of three conditions:  Autism, Asperger's, or PDD-NOS.  The big question is, who should be diagnosed with what?  Is there a coherent sense of classification, or is it merely arbitrary or random?  She reviewed the diagnostic data for several thousand spectrumites in an effort to determine what caused a person to end up in one of those three categories.

To her surprise, after analyzing the data, she found the principal predictive factor had nothing to do with the individual.  Looking at records from a number of good university hospitals, she found places who called almost everyone Asperger, and other places where everyone was PDD-NOS. There was no discernible pattern of variation between individuals; they seemed to simply get different diagnoses in different places.

Was there more to the story?

To answer that, she looked at other factors, like IQ.  For example, many people call Asperger's "autism lite" or "high IQ autism.". Her review of Asperger diagnoses at one Ivy League school bore that out, with their Asperger kids having average IQ of 123.  However, other doctors must see Asperger's differently, because a Midwest clinic in the study has an average Asperger IQ of 85. 

She looked at quality of language in older kids and found similar ambiguity.  Asperger's is supposed to distinguish autistic kids who don't have trouble speaking or understanding language.  That can be true at age three, but what happens when kids get older and talk more?  In the final analysis she did not find any consistent measures of the individuals themselves that led to one label or the other being applied.

In my opinion, those findings support the argument that there is no consistent  standard that sets the three descriptive terms for autisms apart.  A difference at one point becomes invisible at another.  For example, you could say four year old Mike does not talk so he's autistic and Jimmy talks up a storm so he's Aspergers.  But what happens when both kids are ten and they look and sound the same?  Were the differences justified?  What purpose might they serve by their difference?

Her findings made one more strong argument for combining all autism diagnoses under the heading of Autism Spectrum Disorder, with a described range of disability or affect.

That's the way things seem to be headed for the next DSM. 

At the same time, Dr. Lord expressed concern that many people have a strong personal investment in one diagnostic name or the other, and they should be able to keep using the different terms.

Stay tuned for more tomorrow, from IMFAR 2011

John Elder Robison
Author of Be Different, 2011

Wednesday, May 11, 2011

A walk along the San Diego waterfront

Dr. Liz Laugeson on How to Make Friends

I’ve just come from a morning at the Parents/Families/Community conference that’s associated with the big IMFAR autism science meeting.  The conference moves around every year (some of the scientists have a reputation for getting wild) and this year we’re in San Diego.  I flew in late last night just in time to sleep three hours and get up bright and early for the cab ride to the University of California at San Diego.

As long as I remain functional, I will be reporting on events here and at the main conference for the next three days.  In addition, I hope to visit the San Diego container terminal and perhaps capture novel and exciting images of shipping and transportation.

As much I love ships and trains, I recognized my commitment to autism science and dutifully appeared where I was supposed to be, before I was supposed to be there.  I was just in time for the keynote sessions, which I found totally fascinating.

The first talk I’d like to share with you concerned a program called PEERS, which was developed by Liz Laugeson and Fred Frankel of UCLA, and presented by Liz at this morning’s session.

PEERS is a science-based program that helps kids make friends.  I say its science based because she actually tested and proved out the various concepts in PEERS through trials.  By doing that, she was able to quantify what worked and what didn’t.

And that, folks, is a really important thing in the world of therapy.

Most therapists who work with folks on the spectrum do not have autism themselves.  Therefore, things that may seem obvious to them may be totally obscure to the folks they are trying to help.  Consider the example of a teen who has trouble getting into conversations with strangers.

A person who does not have autism instinctively reads the non verbal signals from people around him.  He knows when to speak up and when to be quiet, and he knows how to join a conversation smoothly.  At least, that’s the idea.  A therapist who grew up with those skills naturally assumes everyone else is similar.  That being the case, conversational skill is simply a matter of polishing one’s skill.

Unfortunately, for most autistic people, “polishing” does not work.  We lack the ability to read other people, so “watching and slipping in smoothly” is not something we can do at all, without special training and a lot of practice.  Yet that deficiency may not be at all apparent to a nypical therapist, even after he’s studied autism.  Therefore, the advice that worked for him may totally fail for us, and he may not have any idea why, except to say “we just can’t get it.” 

That’s where science and evidence-based therapy development come in.  Researchers can try different ways of helping people solve problems, and them measure how well that training works in real life.  By testing different strategies, it becomes possible to separate what works from what doesn’t, and to refine what works well into what works better.  That is what Drs Laugeson and Frankel have done with PEERS.

I could cite example after example from the book, but frankly, if you have a personal stake in helping people make friends, I urge you to buy the workbook.  It’s written to do group therapy for high school students but it’s immediately obvious to me that the concepts can be used for self-study and even  for Asperger adults.  I mentioned that to Dr. Laugeson and she agreed but was quick to point out that the work had not been validated yet in adults.

So if you’re an adult Aspergian, or you know one . . .you can be among the first to try these ideas out.  Let me know what you think.

The PEERS workbook is in many ways a clinical version of my Be Different book.  In that book, I talk about the strategies I’ve used to find success, and how I made the most of my autistic gifts while minimizing my disability.  What PEERS does is take those ideas to the next level.

I wrote about making friends from the perspective of my own success as a person with Asperger’s.  PEERS approaches the same problem but from the perspective of many young people with autism, not just me.

PEERS was developed with funding from the National Institutes of Health.  To me, it’s a great example of the kind of research we should encourage in the autism community.  This is work that will be of tremendous benefit to many people growing up with autism now. 

Over the next few days, I’ll be looking at all sorts of research.   I’ll see work from biologists, geneticists, psychologists, neurologists, and psychiatrists.  I’ll even be looking at studies from public health people and statisticians.  Stay tuned as I report on highlights to come . . . after I visit the Container Terminal

John Elder Robison

Monday, May 9, 2011

New study finds Korean incidence of autism 1 in 38

We talk a lot about the steadily increasing rates of autism diagnosis in the US, but we don't hear too much about the rest of the world.  In this study, funded in part by Autism Speaks, researchers found a 2.6% incidence of autism in the Korean population.

I think autism is under-reported here in the US, but even I was surprised by the findings of this research.

Here is the official press release:

New York, N.Y. (May 9, 2011) – In the first comprehensive study of autism prevalence using a total population sample, an international team of investigators from the U.S., South Korea, and Canada estimated the prevalence of autism spectrum disorders (ASD) in South Korea to be 2.64%, or approximately 1 in 38 children, and concluded that autism prevalence estimates worldwide may increase when this approach is used to identify children with ASD. “Prevalence of Autism Spectrum Disorder in a Total Population Sample,” published today online in the American Journal of Psychiatry reports on a study of all children (approximately 55,000) ages 7-12 years in a South Korean community, including those enrolled in special education and the disability registry, as well as all children enrolled in general education schools. Children were systematically assessed using multiple clinical evaluations.
The research by Young Shin Kim, M.D., M.S., M.P.H., Ph.D. of the Yale Child Study Center, and her collaborators Bennett L. Leventhal, M.D., Yun-Joo Koh, Ph.D., Eric Fombonne, M.D., Eugene Laska, Ph.D., Eun-Chung Lim, M.A., Keun-Ah Cheon, M.D., Ph.D., Soo-Jeong Kim, M.D., HyunKyung Lee, M.A., Dong-Ho Song, M.D. and Roy Richard Grinker, Ph.D. found more than two-thirds of ASD cases in the mainstream school population, unrecognized and untreated. “These findings suggest that ASD is under-diagnosed and under-reported and that rigorous screening and comprehensive population studies may be necessary to produce accurate ASD prevalence estimates,” stated Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D. “Autism Speaks funded this study to support better detection, assessment and services and to encourage international autism research.”
According to Dr. Kim, experts disagree about the causes and significance of reported increases in ASD, partly because of variations in diagnostic criteria and incomplete epidemiologic studies that have limited the establishment of actual population-based rates. “We were able to find more children with ASD and describe the full spectrum of ASD clinical characteristics,” said Dr. Kim. “Recent research reveals that part of the increase in reported ASD prevalence appears attributable to factors such as increased public awareness and broadening of diagnostic criteria. This study suggests that better case finding may actually account for an even larger increase. While the current project did not investigate potential risk factors in this particular population, the study does set the stage for ongoing work to examine genetic and environmental factors contributing to the risk of ASD.”
This study is further evidence that autism transcends cultural, geographic, and ethnic boundaries and that autism is a major global public health concern, not limited to the Western world. To date, there is no evidence of differences in the way ASD is expressed in children around the world; however it is possible that cultural factors may impact diagnostic practices and prevalence estimates. As a result, the South Korean study took a comprehensive approach to mitigate potential cultural bias. According to Dr. Grinker, a cultural anthropologist at George Washington University, “Parent and teacher focus groups were conducted to identify local beliefs that might influence symptom reporting and to address stigma and misunderstandings related to ASD. Further, clinical diagnoses were established by Korean diagnosticians with extensive clinical and research experience in both the U.S. and Korea and were validated by North American experts.”
The study does not suggest that Koreans have more autism than any other population in the world. What it does suggest is that autism is more common than previously thought and that, if researchers look carefully, especially in previously understudied, non-clinical populations, they may find more children with ASD. In addition to the South Korean study, Autism Speaks is supporting similar epidemiological research efforts in India, South Africa, Mexico, and Taiwan, including the translation and adaptation of the gold-standard diagnostic instruments into languages spoken by more than 1.7 billion people worldwide.
“This is the first comprehensive population sample-based prevalence calculation in Korea, and replication in other populations is essential,” explained Dr. Dawson. “Notwithstanding the need for replication, this study provides important evidence that the application of validated, reliable and commonly accepted screening procedures and diagnostic criteria applied to a total population has the potential to yield an ASD prevalence exceeding previous estimates.”
“We know that the best outcomes for children with ASD come from the earliest possible diagnosis and intervention,” concluded Dr. Kim and her colleague Dr. Koh from the Korea Institute for Children’s Social Development, “Goyang City, host of the Korea study, has courageously responded to these study findings by providing comprehensive assessment and intervention services for all first graders entering their school system. We hope that others will follow Goyang City’s example so that any population based identification of children with ASD is accompanied by intervention services for those children and their families.”
This research was funded by a Pilot Research Grant from Autism Speaks as well as grants from the Children’s Brain Research Foundation, NIMH and the George Washington University Institute for Ethnographic Research.

Thursday, May 5, 2011

A few new videos to share

Health Central is one of the most popular sites on the web, and it's run by my friend Jeremy Shane, who has a family member on the spectrum.  A few weeks ago he came to see my talk at Ivymount School, and we did a series of interviews.  Today they are featured in a new autism section that I invite you to check out here, on Health Central

I also stopped in at Google on that same speaking tour.  I visited their Mountainview headquarters, outside of San Francisco, where I talked about life as a geek and fitting in.  They've added that to their Authors At Google series, and you can watch it here

Wednesday, May 4, 2011

Men with Guns, and tales from the road . . .

Earlier this week I had the privilege of speaking to the folks at the Brooklyn Women's League.  The League operates group homes for folks with disabilities in the Hasidic Jewish part of Brooklyn.

My hosts put me up for the night at the Avenue Plaza hotel, a kosher establishment on the corner of 13th Avenue and 47th Street.

I went to bed early, and since it was a warm night, I left my fourth-floor windows open.  Why not? I'd been assured that I was in a safe area, and I'd seen the Hebrew "neighborhood watch" signs on every business.  The only folks on the street were Hasidim.  They are distinctive in their black coats and hats and white shirts, and I'd always known them as peaceful.  I'd never known them to attack or raise a ruckus.

They are a serious, conservative, quiet bunch.  Knowing that, I went to bed expecting a calm night in the suburbs.  But it wasn't meant to be . . . I was awakened at 11:30 by shouting and sirens. Looking out, I saw the intersection blocked with police cars and a mob of people.  I grabbed a camera and flashlight, and headed out the door . . .

The hotel doorman had the answer. Two guys with guns tried to hold up the store over there.  He called for help on his radio, and the community turned out.  We're holding the guys for the police.  He was a proud member of the Watch.  The store keepers all have radios, and there are members everywhere in the community.  When an emergency call goes out, they move fast.  These guys didn't have a chance.  Before they knew what hit them, the store was surrounded by serious looking men in suits, and they weren't going anywhere.

When I reached the intersection, I saw the cops had arrived but there was a huge crowd pressing up against the corner store.

Moving closer, I found the mob had squashed the would-be robbers against the wall where they were arrested by the NYPD.  I was impressed that a crowd of unarmed men faced down two guys with guns, and won.  But where were they going to go?  Six shots would not go very far against 400 people.  They were peaceful as long as the crooks stayed surrendered, but if they started shooting, I'll bet they'd have torn them to bits.

The cops got them into the car, and the crowd reluctantly parted to let them leave.

The next morning, it was as if it never happened . . .

This is a community that stands up for itself.  I was impressed.  I've seen a lot of "community watch" stickers over the years, but I never saw one with that was backed up with a crew like this . . .