Sunday, May 14, 2017

Mastering the Obvious in Autism Science



At this years IMFAR autism science conference I saw several presentations on seemingly obvious topics.  For example, one study (DaPaz, University of California at San Francisco) assessed the responses of 89 parents to their children’s autism.  The comments were grouped into three categories – despair/hopelessness; self-blame/searching; and acceptance/benefit finding.  The researchers drew conclusions about the relationship between the types of comments and the parent’s states of mind.  Not surprisingly the parents who reported mostly despair had poorer outcomes and acceptance was associated with lower stress.  When I mentioned that study the most common reaction was, “Isn’t that obvious? Why are we spending money on a study like that?”

There were plenty of other similarly “obvious” studies.  For example, one showed that parents who are educated about their children’s autism do better. Another found that kids do better when parents are taught basic autism therapy skills.



Here’s a really important point to consider when you ask why agencies fund studies like that:  When it comes to arguing what health insurance should cover, decisions are driven by evidence.  You may think a certain thing is obvious, but without clear evidence, you are unlikely to see any insurance company cover it.  Even when we think the evidence is clear, doubt may remain and that can necessitate more studies.  Occasionally, studies of the obvious reveal really surprising things, showing us that the obvious is sometimes badly misunderstood.

For example we have all hear that employment statistics for autistic people are dismal.  “90% unemployed,” is a number that’s commonly bandied about.  Personally I always doubted that and in fact an Autistica UK study that I saw on Friday night showed the number was closer to 60%.  In that case far more people seem to be working that previously assumed.

There are obvious implications for public health policy in number like that.

There’s a third group of “obvious” studies that we need very much.  Those are the studies that further validate initial research results.  It’s great when a lab reports positive outcomes for a new intervention or therapy.  But one great result is not enough to put that new there app on the menu all across the country.  We need a plethora of studies – on disparate populations; done by different groups of researchers – to build a really solid base of evidence that something worked.  That’s what it takes to win insurance approval for anything new, and even then, it takes years.

You can certainly decry this system as unfair and exclusionary.  You might feel the insurers are just trying to escape what you see as a moral obligation.  But of course they would answer that they have responsibilities to both their insured population and their share holders.  The fact is, without evidence, we are nowhere with even the best new therapy.

Sometimes these “obvious” studies are conducted by young scientists who are just starting out.  I encourage that. Other times they are conducted by better established scientists under the sponsorship of someone with a stake in the therapy under test.  We have to be careful with work like that because conflicts of interest can destroy the credibility of even the best done research.

The next time you see a piece of work you think is obvious, rather than criticize it as wasteful, as if this will be enough to expand the coverage of autism services to be closer to what we really need.  In far too much of the country, the only thing insurers cover is ABA.  That is equivalent to saying the only thing we will cover to treat your depression is Trazodone.  All those other depression mess and therapies – not enough evidence for them.  How well do you think that would work?  If you say, not well at all, that is the reality we face in deploying therapies for autism right now.

That said, we do sometimes have too many studies of certain topics.  That is particularly true of well-studied paths that are not direct tests of new therapies.  People sometimes ask how many eye tracking studies we need, or how many baby sibs studies?  In my opinion, those questions relate to a larger question – the balance of research funding.  Should we spend less on basic research (such as the examples I cite) and move some of that money to develop and prove out therapies we could use tomorrow?  If my conversations in the community are a guide many who live with autism would say yes, though most would also want basic scientific research to continue.

Deciding how to spend our limited research dollars is difficult.  But there’s less outright waste than many people imagine.  There is good reason to “master the obvious.”

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 & 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 may give you food for thought, actually printing and eating it may make you sick. 







Thursday, May 11, 2017

Getting involved guiding autism research

In the early days of autism research non-autistic doctors and scientists observed autistic people like me, asked questions, and then formulated their best ideas about what our problems were, and what research might be beneficial and interesting.  Autistic people were patients and study subjects, but we had little say in the research designs.

Over the past few decades autistic people have come into their own, and an autistic culture has emerged.  Autistic people began to assert themselves in research, taking stances on the ethics of some studies and the basic purpose of other work.  The Internet empowered many people, and some began offering their thoughts on research and autism science.

I’ve written about my own autism science journey, and autistic people now ask how they can get involved.  I’d like to offer some suggestions.

The first place for most of us is where we live.  Are you part of a local autism support group?  Do you know other autistic people?  If you live in an area where no such groups exist I suggest you get something started.  The first step in powerful advocacy is to have a community, and encourage it to grow.

Check with local colleges and universities, and see who’s doing autism research where you may be able to contribute.  Many departments may be involved in research, and you often find the different departments don’t know what the others are doing.  You can find autism researchers in such diverse departments as Communication Science Disorders, Speech Pathology, Occupational Therapy, Psychology, the medical school, Education, Nursing and even the business school.

Research in your area may be focused on very low-level biology, or more practical things like workplace safety.  Given the available research – which is dependent on faculty interests, abilities, and funding – where might you make a contribution?  My first suggestion is that you approach autism researchers, explain that you are an autistic person yourself, and ask how you may be of help.  If my experience is a guide most researchers will welcome your help.  In my own advocacy work I encourage our government funders to require autistic involvement in structuring new studies, and I encourage members of INSAR – the professional society for autism science – to do the same.

I'd like to be clear about something here . . . Autistic people have been connecting with researchers for years . . . In the context of volunteering to be research subjects.  In the same way, autism parents have connected with researchers for years, to volunteer their children as subjects.   This essay is not about that.  In this essay I recognize that those researchers will benefit from guidance and advice from actual autistic people in structuring the studies they may later ask us to take part in as volunteers.  I'm encouraging you to be one of those guides or advisors, at least at first.  If you want to volunteer, fine, but let's make sure what we volunteer for is shaped to help us best.

If you are lucky enough to live in a city where an autism conference is hosted you’ll have a great opportunity to meet researchers from all over.  For example, this years IMFAR conference is in San Francisco and there are a number of autistic people in attendance, making connections with researchers.  This is the world’s largest autism science gathering, and it happens once a year, but there are smaller autism science conferences at universities all over, all the time.

Government agencies are also looking for autistic people who can help shape research.  One central point for contact is the Office of Autism Research Coordination in the National Institutes of Health.  Contact them and offer your services as a reviewer of research grant applications, and that could lead to service on any number of other committees within our public health services.  If you are chosen to review proposed research you will be reimbursed for travel and paid a small stipend.



Opportunities may also exist for autistic people to work with private foundations who fund autism research.  Some groups will be open to your thoughts; others will have their own agendas.  The more you can open up funding groups to autistic input, the better.

Those are hands-on actions you can take to ensure autism science is usefully guided by autistic thinking.  Are you ready to tackle them?  In some cases all you need to provide useful input is the live experience of autism.  That is enough to get started.  The deeper you get the more you will find a knowledge of the research landscape useful.  Medical science is complex, and so are all the other disciplines that offer promise for improved quality of life.  No one person can master them all, but if you become expert in a particular area you may wish to focus your guidance and advice there.  Others will prefer to remain generalists and use their lived experience alone.

Many self advocates talk about medical and social models of autism, and some suggest that we need to “switch” from medical to social perspectives.  I believe there is a place for both.  There are social scientists studying that very question, and they may benefit enormously from autistic insight.  More than that, the medical issues that often accompany autism are real, and to turn away from a medical model of autism is to ignore that reality.  You may not see a need for medical science to improve your quality of life, but others who suffer intestinal pain, epilepsy or anxiety may have a very different perspective.

Finally, I encourage you to speak out.  By writing about your experiences you may inspire others.  You will contribute to the building of community which is what gives our advocacy perspective.  With community we become part of a tribe with all that entails.  We have unique strengths and we share certain weaknesses.  The better we join our voices, the louder and more effective we will be.


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 & 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 may give you food for thought, actually printing and eating it may make you sick.