Monday, November 13, 2017

If you could change autism research today, what would you do?

Recently I suggested that people who are actually autistic need to have a strong voice in guiding autism research.  I made the point that anyone who is not autistic is simply guessing when it comes to interpreting our behaviors.  Only an autistic person can truly know autistic life.  That is not a slight against parents; it is just reality.

Some autistic people are parents too, and they have both perspectives.  That’s particularly valuable.  And parents as a group are the only ones who can report fully on the development of very young children who can’t speak for themselves.

But it leaves a fundamental question unanswered.  If I believe autistic people should have a strong voice in guiding research, what would I ask for?

Autism is a difference that affects us through the lifespan.  Childhood is 20-25% of the typical lifespan.  Less than 5% of current research is directed toward understanding adult issues.  I would shoot for 50% of newly funded research addressing at either adult or full lifespan issues.

I’d require that proposed research include a statement from autistic community members about the methodology, utility, and ethics of the proposed study.  I’d expect at least half the community members to be actual autistic people with the others being parents and professionals.

As for the topics of study . . .

I’d make the study of apparent early mortality of autistic people a top priority.  Why does it happen and what can we do?

The initial findings on suicide and suicidal ideation are scary enough that I think that area deserves its own concentration of study.

I’d put considerably more emphasis on understanding the co-occurring conditions that accompany autism.  Epilepsy, anxiety, intestinal issues, depression, and others.  Most of these conditions seem more resistant to treatment or control in autistic people.  Why is that and what can we do?  If we could control or remediate these symptoms we’d be a lot closer to minimizing autistic disability.

Look at epilepsy in the general population.  Successful management via meds means no seizures.  Now look at many autistics - same meds every day, but seizures still happen.  Poor control.  Or take depression.  Autistic and non autistic mostly manage with meds.  Yet we autistics are nine times more likely to kill ourselves.   Why are our outcomes so much worse?

Many autistic people have sleep problems.  That is another co occurring condition that merits more study.  The number of problems associated with these co-occcurring conditions make me think that a large fraction of the pain and suffering we autistics experience comes from those things, and if we could relieve that it would be a really big deal.

I’d encourage research aimed at improving communication skills, both verbal and non verbal.  We've funded programs like PEERS and UNSTUCK to tremendous benefit.  

I’d encourage research into improving executive function for autistic people at all levels of support.

I’d figure out how to expand apprenticeship/work training programs like Project Search that can transition both low and high support autistic people into the workforce.  These projects have shown very encouraging results but we don’t know how to replicate them widely.

I’d seek research proposals from engineering and industrial design people looking for innovative solutions to help non speaking autistics communicate.  We have letter and symbol boards, and ipad versions of same, but I think there is a lot more potential there.  Unlocking communication is the biggest thing we could do to relieve disability in some people.

I’d study other ways technology could be used to minimize our autistic disabilities.  We think of autism as something we’ll address through medical treatment or behavioral therapy but there is tremendous promise for help through engineering.

I’d study the housing options for adults who cannot live independently.  Sharp differences exist between supporters of community and individual apartment housing.  We should agree that we need safe, supportive, affordable housing options that parents can trust when they can no longer care for higher support adult children at home.

I’d figure out how to extend the supports given to autistic people through high school into adulthood.

I’d tackle the pressing questions the IACC has collectively identified in the 2017 Strategic Plan Update.

Finally, I’d ask the community what their concerns are and synthesize them into a revised plan.

This is far from a complete list, but it’s a start

John Elder Robison

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, Virginia and a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts.  

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay will give you food for thought, actually printing and eating it may make you sick.