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