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. 

Monday, October 23, 2017

A Change in Direction for the Federal Autism Committee

I am pleased to see that our government’s understanding of autism is changing.  For the first time, the IACC’s Strategic Plan recognizes that the needs of people living with autism today are paramount.  This portion of the introduction to the 2016-17 Update speaks for itself:

The IACC has moved toward a paradigm shift in how we approach autism. A few years ago, scientists saw autism as a disorder to be detected, treated, prevented and cured. The majority of research was directed at understanding the genetic and biological foundations of autism, and toward early detection and intervention.

Today, our understanding of autism is more nuanced. We realize that there are many different “autisms” – some severe, and some comparatively mild – and that ASD affects several distinct domains of functioning differently in each individual. We have come to understand that autism is far more common than previously suspected and there are most likely many undiagnosed children, adolescents, and adults in the population, as well as under-identified and underserved individuals and groups, such as girls/women with ASD, people in poorly resourced settings, members of underserved minority communities, and individuals on the autism spectrum with language and/or intellectual disabilities.

Most importantly, individuals on the autism spectrum have become leading voices in the conversation about autism, spurring acknowledgment of the unique qualities that people on the autism spectrum contribute to society and promoting self-direction, awareness, acceptance and inclusion as important societal goals.

Research on genetic risk and the underlying basic biology of ASD remains a primary focus of the research portfolio and does play an important long-term role in the potential to develop new and broadly beneficial therapies and interventions. These advances may one day mitigate or even eliminate some of the most disabling aspects of autism, especially for those on the spectrum who are most severely impacted.

However, balanced with the potential for long term efforts to lead to significant future advance and opportunities, is the importance of efforts that can have a more immediate impact. Individuals on the autism spectrum today will remain autistic for the foreseeable future; most of them have significant unmet needs. To help those people – who range in age from infants to senior citizens – we must in the short-term translate existing research to develop effective tools and strategies to maximize quality of life, and minimize disability, while also ensuring that individuals on the autism spectrum are accepted, included, and integrated in all aspects of community life.


The community has been very clear in its calls for more research into adult issues and better services and supports for the millions of Americans living with autism today. Recent studies of adult mortality have indicated that people with ASD are at higher risk of premature death than people in the general population, painting a very disturbing picture that bears investigation. In light of data and insights from the community, the IACC proposes a comprehensive research agenda that addresses the needs of autistic people across the spectrum and across the lifespan, including improvements to services, supports, and policies. The IACC also believes that, as many in the autism community have indicated, efforts to address the many co-occurring conditions that accompany autism should be made a greater priority.

Saturday, August 19, 2017

A Death in the Night, and Pause for Thought

This morning I arrived work to a disturbing piece of news.  “A pedestrian got killed by a car last night in . . . .”  Our complex is home to a fleet of emergency ambulances and we hear lots of things, but deaths still stand out.

“She used to live at the State School,” and “I remember seeing her cross the street with her cat on a leash.  Inside a cat carrier box.  Just pulling it along behind her.”   “She would just walk out in front of cars, and I guess one finally got her.” Later, comments following a newspaper article would describe her as eccentric, and “Our town’s most famous pedestrian.”

I perked my ears up at that, because the Belchertown State School was where teachers threatened to send me, forty years earlier, when I failed to meet their behavioral expectations.  The State School was a nasty place, a school in name only; a nasty warehouse for autistic and intellectually disabled people. 

That reflection and the news story made me wonder . . . was the person who was killed autistic?  I have no idea, but the way her story was presented gave me pause for thought. When a young autistic person is hit by a car, parents furnish the headlines, which usually read something like this:  “Autistic teen killed by car in terrible accident.”  The danger of wandering is often cited.

When researchers gather statistics on wandering deaths they look for headlines like that, and tally them up.  But what happens to the autistic people who get old, and have no parents to tell their story when they step in front of traffic?   People in the community shake their heads, and remember their eccentricity.  Some remember the institution where they used to live.  The headlines are noncommittal; “Pedestrian killed in late night crash.”

The cause could be anything.  

That story made me realize two things:

The role of autism and developmental difference in deaths of adults with disabilities is almost certainly significantly underreported when older people don’t have parents or others to present that part of the story.  Children "die from wandering."  Older people are just one more casualty, "hit by a car."

Parents who are concerned that their autistic child will walk in front of a car someday are right to be worried about what may happen when they are gone.  Many of us remain oblivious to cars and other dangers our whole lives, and for some, life is cut short as a result. Yet our freedom is precious, and not likely taken away or constrained, even when it leads us into danger.

Wandering presents the autism community with a difficult moral dilemma.  Autistic advocates argue that the “wandering” some parents call out is really an effort to satisfy curiosity or escape a stressful situation.  While that is surely true some of the time, what if the person’s escape takes them into the path of an oncoming car?

We’ve discussed this more than once at IACC, without seeing any good solutions.  Tracking devices don’t prevent people from falling in water or dying in roadways.  Locks present a whole host of problems as a type of restraint.  Supervision sounds like a good answer, but very expensive and frankly impractical on a 24/7 basis.

At some point, most cognitively disabled people are either left unsupervised in the community, or they end up in a group home, jail or some other form of institutionalization.  Many die early from accident or neglect.  And of those deaths, the contribution of cognitive disability to the premature mortality (for whatever reason) surely often goes overlooked.

In the case that caught my eye, the headline simply said, “Woman struck and killed by car.”

Would you – as a reader – have felt different if the headline had said, Intellectually disabled woman . . ., or, Autistic woman . . .?    

I think the addition of either of those words would have implied a connection between cognitive disability and the death.  They would give readers pause for thought, and perhaps make people think that some of the folks wandering the streets are more vulnerable to unwittingly step in front of a car than others.

But who would add the words?  The sad truth is, many cognitively disabled people live lonely lives, and at the end, there may be no one to tell our story.

I believe we have a duty to protect the vulnerable members of our society.  At the same time, I understand the feelings of those who say we should not have a duty to protect against stupidity.  It’s a matter of context.  People rightly object when our Coast Guard spends thousands to rescue drunken boaters.  The rescue of children and cognitively disabled people is a very different story because they do not “know better,” and often cannot help themselves.

If you agree with me, give some thought to the question.   Where do you think people with cognitive disabilities should live as adults?  If you agree the community is best, how might we protect people while still respecting free choice and self determination?  Can we, and should we even try?  Does the protection we extend to children just run out at some point in adulthood?

These are difficult ethical questions and they don’t have easy answers.


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.