Home > Science > Sound Bites – Autism Tidbits from IMFAR 2011

Sound Bites – Autism Tidbits from IMFAR 2011

This is a guest blog post from Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventured of a Free-Range Aspergian.

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 of 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 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 Autism Speaks “Autism Connects” technology competition drew over 130 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 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 Autism Speaks and Wrong Planet websites, 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!


  1. Sharon
    May 14, 2011 at 2:57 pm

    But…what if autism isn’t a DIS ability, but a NEW ability? What if it’s the NEW ability to organize things better, to compartmentalize, to have better, different senses? What if it’s the next step in evolution? What if those of us that AREN’T autistic are the “disabled” ones because we didn’t evolve? What if “curing” autism is like curing walking upright, or the ability to do higher math?

  2. Sarah
    May 15, 2011 at 9:55 pm

    Thank you John. Your enthusiasm is inspiring and contagious. :)

  3. Della
    May 16, 2011 at 10:32 am

    Agreed, Sharon. Maybe this is all just evolution. Your comment “curing” walking upright was perfect. The other issue I see is the statement, “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.” So, what if six children fell out of a hayride and 2 broke their legs? Determining genetic predisposition for 2 children with broken legs seems fruitless. Maybe change the safety and security of the hayride, because how many more falls before the other 4 break their legs or arms? How many more children will get ASD before we change something? Or maybe we just need to accept it as an evolutionary change and discontinue the frenzied findings verifying culpability of individual defectiveness or family derivation. The numbers keep marching onward. I agree with Sharon.

  4. Della
    May 16, 2011 at 11:13 am

    I couldn’t agree more, Sarah! Thank you for all that you do, John. My previous comment was just a thought. I live on this site and absorb as much as I can so that my support for my autistic grandchild will be better.

  5. Katie Wright
    May 16, 2011 at 12:34 pm

    Dear John,

    Thank you for sharing some lovely thoughts.
    I understand your point of view completely.

    However we you speak of needing more research to understand the of nonverbal people w/ ASD I think parents like me know the needs of our children- the problem is too few autism researchers are asking. I know what my son to trying to communicate when he looks at me with tears in his eyes as he hits his stomach with closed fists. I don’t need more MRI research to tell me his intentions.

    I remember like yesterday the look on his face when I knew he no longer recognized me. I can recognize the look when he is trying to tell me he is afraid to eat something for fear it will lead to pain.

    Sometimes it is not about science fixing or not fixing the problem but discovering that science may have caused these problems and we have to painstakingly unravel the trajectory of symptoms.

    I wish AS and IMFAR had invited and funded parents of nonverbal ASD kids to come and speak.

  6. May 20, 2011 at 1:36 pm

    I’ve appreciated all of your communications from IMFAR. You and Alex Plank have been my sources for news of the “state of the science”. Additionally, I have appreciated how you’ve added your personalized comments about your experiences, feelings and analyses. You have not only allowed me to help my own Aspie adult daughter and all my Aspie clients and families, but once again, you’ve shared some of yourself with me. I sincerely thank you.

    Just another nypical fan,

    Dr. Sue Lerner

  1. May 14, 2011 at 2:16 pm
  2. May 15, 2011 at 11:00 am
  3. May 17, 2011 at 9:42 am

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