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!

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

7 comments:

Molly said...

John- I've enjoyed reading your comments and thoughts on the conference. Thanks for all that you do for those in the ASD community, no matter what our role is.

barbanoa said...

Jon excellent! And you're a great guest. Gotta get you on my radio show a 3rd time for the TMS we spoke about! We will! Thanks for all the info! ~ ANNE

Justthisguy said...

I've read John McPhee's book. The Corps of Engineers are pissing into the wind when it comes to controlling the Mississippi river. If the river wishes to change its course, it should be allowed to do so.

I really don't care if that bothers the people in New Orleans, a wretched hive of scum and villainy.

The Engineers are to some extent responsible for the deterioration of wildlife habitat in the Delta, too.

People will yell, "What about the refineries and chemical plants which will no longer have easy water access?"

Too bad, I say. If you have money buy real estate in and around Morgan City..

Atchafalaya, baby!

forsythia said...

Just read BE DIFFERENT and liked it very much. One of my favorite people--a grandson, age 8--may very well be "on the spectrum." The jury is still out. Your book helps me understand him a little bit more. THANK YOU!

June said...

John: my 53 year old son has just been given a diagnosis of Aspergers Syndrome.He graduated from University suma cum laude with a degree in Psychology but has exteme difficulty socially and in the work place. He just recently lost another job because of his "bad attitude".I watched the program Ingenious Minds and felt I was almost watching my son.I wish he could get the help you have been able to get. Thank you for writing you books. they will help me to understand him.

Bryan Maloney said...

Lahiri, D. K., Maloney, B., Zawia, N. H. (2009) The LEARn model: an epigenetic explanation for idiopathic neurobiological diseases. Mol Psychiatry 14, 992-1003.

could explain the "triggers", or at the very least offer a testable hypothesis or hypotheses.

newnoz said...

I will start with my only negative about this piece It's a bit of logic
The statement science doesn't have an agenda is true but It's is a bit like saying government does not have an agenda. Science is an ideal. People who do science and who fund science can have agendas.
That said i don't see why I would mistrust scientists as group for a couple of reasons. Firstly, while i might reserve judgement on any particular person and not take everything at face value, I see no need to mistrust a group of people just because i am not one of them. It has happened to me and my learned empathy says that is not fair; the old 'two wrongs doesn't make a right' theory.
Secondly I think that most scientists and engineers have a touch of ASD. Not the sort that makes their lives miserable overall but the good side that makes them more likely to be open minded about most things. Still they are human beings and we are often fallible. How i wish it were not so as i would love to be 'perfected' myself.
All said, i find being mistrusting as problematic as being too trusting. Life began for me when i discovered the thought that most people are shades of gray rather than black and white In other words a combination of good and bad stuff.

I loved your use of the disaster as an analogy. That was great. Perfecto!