I’ve just come from this summer’s Autism Speaks treatment
grant review, and I’d like to share some thoughts about our most recent
work. I’m very pleased at the direction
we are headed. Changes were evident the
moment I entered the meeting room. We
had fresh faces representing new branches of science and engineering, and a
real sense that we need to take action and translate recent years work into
tangible benefit for the autistic population.
To understand what went on, I should begin with a little background
on the review is conducted. Most large
foundations and the Federal government use a similar process; here’s how it
works.
The funding organization first sends out a request for
proposals. In that, they spell out what
they are looking for. In this instance,
Autism Speaks was looking for innovative proposals that led to new ways of
treating or remediating some aspect of autistic disability.
Researchers from all over submitted applications. Over 100 came in. Of that number, roughly 70 were deemed suitable
for serious consideration. Those
proposals were handed out to reviewers who had expertise in those areas of
work. Our reviewers are drawn from
academia and medicine.; some serve as members of the permanent review board
while others join for one session only.
The proposals were each examined by three reviewers, who
assigned scores from 1 (wonderful) to 5 (poor).
Each science reviewer was assigned 6-10 applications; a fairly heavy
workload given the volunteer nature of this work.
The scores were ranked, and the administrators selected the
top thirty-some proposals for more detailed discussion based on those initial
scores. Those were the applications we
reviewed this week in San Francisco.
The applications were discussed in a somewhat randomized
order, one at a time. For each one, the
first assigned reviewer began by stating his score and describing the proposed
work. The second and third reviewers
added their comments and scores, after which the proposal was up for
discussion. Any of us could ask
questions, or express our opinions as to why the proposed work should or should
not be supported, or how the proposal might be modified or improved.
We can only fund a fraction of the applications received,
and we do our best to give constructive feedback when we turn a proposal
down. Maybe we think the goals are too
ambitious, or some part of the methodology is not well enough thought
through. Perhaps we think a collaborator
with different skills (software design, for instance) might be needed. Whatever out thoughts, they go back to the
applicants with the suggestion that they keep refining and reapply.
When the discussion ends (usually after 15 minutes or so) we
all vote on the proposal and our votes are averaged to get the final score. In that system, a passionate critic or
supporter (like me) has the ability to move everyone’s scores up or down based
on their comments. That means any one of
us can exercise greater power than one might expect given the size of the
board.
I was very happy to see how the makeup of the review group
has changed over the past few years.
Past boards were dominated by geneticists and medical people. This board had computer science experts, robotics
experts, and experts from speech pathology, psychology, and psychiatry. That’s great to see because those are the
disciplines that will deliver much of the practical help we need. Since autism affects us in many and varied
ways there was a lot of variety in the proposals we discussed this week.
There were only a few proposals involving medication,
something I found interesting. As more
than one scientist pointed out, we have yet to find a drug treatment for any of
the core symptoms of autism. We treat
the conditions that go with it – anxiety and depression for example – but the
core problems remain untouched. Yet
medicine still holds promise, especially in light of emerging knowledge in
genetics and biology.
Last year I wrote about some exciting work at Cold Spring
Labs, where scientists found a connection between a genetic error and sensory
sensitivity, and followed up that discovery with the identification of a
possible drug treatment. That work was
not part of this week’s discussion but it’s an example of how we will
eventually have drugs to remediate some aspects of autistic disability.
The idea of these potential drug therapies is simple to
describe, but extremely hard to implement.
Geneticists find a coding error that’s linked to autism. That error causes more or less of some
chemical to be made in our brains, which in turn changes the way they develop
in a maladaptive way. With that
knowledge, chemists develop drugs that (hopefully) address the chemical
imbalance and facilitate more normal brain development or function.
That work holds significant promise for the most crippling
aspects of autism. But what’s being done
for people at the other end of the spectrum; those who are not so obviously
disabled but who still face substantial challenges with executive function and
social skill? That question was a major
focus of this week’s meeting.
Quite a few proposals were directed at the development of
better organization, stronger social skills, and other problems that challenge
people like me every day. We’re looking
at how sleep dysfunction adds to disability, and what to do about eating
problems. We’re looking at practical
adult issues with new therapies to help us succeed in school and employment.
There has been a great outcry for this type of work from the
autism community and I’m delighted to see researchers are responding and the
funding agencies are coming through with support. It will be a few years before you begin
reading results in the journals but this is the first step.
I was also very happy to see that a large percentage of the
proposed work would benefit autistic adults, as opposed to children. Indeed, the percentage of proposals that
addressed teen and adult issues was the highest I’ve seen yet.
Many if not most of the therapies we discussed were directed
at the more verbal end of the autism spectrum. The challenge there is that
people often lack understanding of why they should say or do a particular
thing, and teaching a rote response (the behavioral method, exemplified by ABA)
comes across as mechanical and fake.
It’s far harder to teach this deeper understanding (which some NT people
have instinctively) but this newest work proposes to do just that, in several
areas.
The therapies we discussed were based entirely on
talking. Personally, I’d like to see the
power of talk therapy augmented by new medication or tools like TMS but we are
not quite at that stage in the research. I can’t wait till we are.
The whole idea of this kind of therapy is to help those of
us on the spectrum make our best possible lives. That goal is in line with the reality of life
for many if not most of us on the spectrum.
We don’t seek “cures” or fundamental change but we need tools to help us
succeed at the levels we know we can.
At the end of our meeting we talked about another pressing
issue: the need for a tool to evaluate changes in quality of life for people on
the spectrum. To my surprise, no good
measure exists today. If we want
insurance to cover the new therapies we are funding, we’ll need to show that
they really help. Development of QOL
measurement tools will be vital to this effort.
That brings us to the next step in this process: delivering
the fruits of research to the population who wants help. Right now, two things hold us back – lack of
insurance coverage and clinician training.
Recent research initiatives have already produced promising
therapies like PEERS and Unstuck but they are not available to many people because
health insurance plans won’t cover them.
A good QOL measure for new therapies would make a powerful argument for
insurance coverage. Ultimately, though,
resolution of that problem lies in the realm of insurance legislation and not
science. Until we solve that social
problem the best of what researchers develop will remain out of reach for most
families.
The other issue – clinician training – is one we must solve
with additional funding. When a new
therapy is developed the researchers need to train a staff that will in turn
train clinicians. That training work
must be supported by yet another grant, and those funds are very tight. Right now many promising interventions remain
relatively unknown for that reason.
Look for a press release in the next few months describing
the final choices for funding. When you
read about the newest research remember this is how it was shaped and
chosen.
