Wednesday, May 31, 2017

Division in the Autism Community - what next for us?





One of the greatest divisions in the autism community is between seekers of a cure, and opponents.  Someone new to the autism community could easily be forgiven for asking how this might be.  Autism is, after all, a disability.  Why would anyone be opposed to curing it?

Autism is not a disease.  It’s a developmental difference that is part of us for life.  In that way autism might be compared to congenital blindness, deafness, or a missing limb.  Those are other disabilities people generally live with for the rest of their lives. 

In the broader disability community there are significant differences of opinion when it comes to assistive technologies.  For example, some deaf people embrace cochlear implants while others reject the idea just as firmly.  If there is one area of broad agreement, it is that the people with the disabilities should have the right to choose assistance or not.  Nothing should be forced upon us. The past few years have seen widespread acceptance of the idea of self determination which is a very good thing.

That brings us to the autism controversy.  Autism is – at its heart – a communication disorder.  Autistics may have a different view of autism but that is the centerpiece of the current definition.   Some autistic people may be strong communicators and gifted thinkers, and their ability to chart their own course is beyond doubt.  What about autistic people who are not able to communicate very successfully?  There are some people in our community whose cognitive disabilities preclude effective communication and prevent self-advocacy.

Autistic people with such severe disability are generally identified in early childhood.  The response of parents has typically been to ask for help with their children.  When faced with an autistic child many parents have reacted with distress, calling for a cure for autism and eradication of what they see as a terrible disability.

Public awareness of autism has increased sharply in the past 20 years.  We now have a generation of young adults who have grown to adulthood after being children those parents wanted so much to cure.  Some are grateful for their parents advocacy, but many are angry.  They reject what they see as harmful interventions forced on them by misguided parents, and they reject the concept that they needed to be cured.

Those young adults have led the move to position autism as a civil rights issue.  They believe most of our presumed disability is actually a mismatch between how we are, and the expectations of modern western society.  They have done a great service by identifying instances of discrimination and marginalization.

Alongside those advocates there is a group of autistic people who take a very different position.  They see autism as a disability, and they wish they could be rid of it. 

Finally there are parents of autistic kids with very severe disability.  As those kids grow to adulthood the parents face hard choices – who will take care of my child when we are gone?  They debate housing and support issues and often find themselves in conflict with autistic advocates with sharply opposing views.

It’s very hard for members of the three groups to find common ground.  People tend to see autism through the lens of personal experience.  An autistic college student who has trouble with organization and social skills is likely to view autism very differently from a parent whose child is non verbal, cognitively disabled, and self injurious. 

The autistic lawyer or engineer who can say "I am autistic and proud to be different" is likely exhibiting a very different set of feelings from a more disabled autistic person who has never been able to hold a job or form satisfying relationships.  It's important to be mindful that both sets of feelings exist in the community.

It’s as if people are seeing totally different conditions, and indeed some say the spectrum is too diverse for that reason.  Yet the science shows that similar biological differences lie at the foundation of both forms of autism.  While there is no one “autism gene” many of the genes we have associated with autism tend to affect people at all points on the spectrum.  Other genes – like those associated with fragile x – tend to be associated with both autism and intellectual disability. 

Here’s where we stand with autism today:

Parents have led the fight to get autism services into preschools and schools. Thanks to their advocacy most states cover some level of autism service.  The range of services is still very limited but the landscape is a far cry from the one I faced as a kid in the 1960s.

Some parents opened a Pandora’s box when they asked where autism came from.  When autism was first recognized in the 1930s it was seen as idiopathic; in other words there was no known cause.  Parents had a hard time accepting that uncertainty; some began making associations between life events and the observed onset of autistic symptoms.  That led to some parents blaming vaccines for causing autism.

Today I see the vaccine issue as symbolic of a breakdown in trust in our public health authorities.  The fact is, people need something to believe in.  When medical science cannot provide good answers pseudo-science and superstition take hold, with potentially disastrous results.  Advocates call that out today, even as the science community has yet to provide satisfactory answers the public can understand.

Science tells us that toxic metals can make people appear autistic.  Injuries and disease can have similar effects.  Do those causes account for most cases of autism?  Most science says no, and the underlying cause for the rest remains unexplained except to say that autism appears to have been woven into the human genome for a very long time. 

For a number of years I have taken the position that it does not matter how we came to be autistic.  What matters is what we do with our lives now.  We can push for social accommodations and we can encourage research to solve our medical problems.  We can look for places to work and live that will be most comfortable. 

Advocates have made a powerful case for the employment and accommodation of autistic people.  The emergent neurodiversity movement has made great strides in getting schools and employers to see the unique contributions autistic people make to society and the workplace.

Self advocates and parents are both active in calling out and fighting discrimination against autistic people.  This is hugely important.   Self advocates in particular are speaking out against abuse of autistic people by caregivers.  In some cases those caregivers are hired help; other times they are family. 

We’ve seen conflict with parents who believe they are the best advocates and caregivers for their children. The fact is, severely disabled people are most likely to be abused by family members.  That said, most family members are not abusers.  Parents may see themselves as unfairly indicted while self advocates point to the statistics and their undeniable truth.  We should be mindful of the reality that statistics won’t tell us what happens in any particular home even as they advise us to be cautious.

Advocates have pushed hard for self-determination.  To that end, they have opposed guardianship and institutionalization of autistic people in group homes.  They rightly say both lead to abuse.  Parents respond that some children cannot make choices for themselves and that leads to a discussion of whether that’s true, or whether the issue is parenting or communication failure, or simply imposing the parent’s will on the disabled person.  Needless to say, emotions run high.

Shame remains a huge problem in the autism community.  Parents may be unable to accept the reality of their autistic child and they may spend a lifetime in denial or misguided efforts to cure.  Studies and life stories have shown us how destructive that can be yet the problem remains.  Autistic people are harmed by growing up with the stigma of being broken or less than other children.  Feelings of inferiority and poor self-image follow many of us well into adulthood.

We’ve seen the emergence of a social model of autism that paints many of our challenges as a mismatch between ourselves and society.  That's a very valuable perspective, one with a long but little known history.  We might look back to the island of Martha's Vineyard in the 19th century - congenital deafness was very common there and there were whole communities where everyone used sign language.  In that place, deafness was not seen as a disability.  In Psychology Today I cited a more recent situation in the southwest Pacific where autistic people appear to have led their communities (both literally and figuratively) as navigators.  Some people now see autism as primarily a social issue, but social solutions are not all that’s needed for the more challenged members of our community.  

For those individuals the medical complications associated with autism are paramount.  Recent studies have shown sharply reduced life expectancies for autistic adults. We live with a wide variety of real and challenging medical conditions like epilepsy, anxiety, and intestinal distress.  For all we’ve spent on autism research this past decade we’ve made precious little tangible progress on those fronts.

In some discussions I see autistic advocates present the evolving social model of autism as "the correct understanding," when in fact it complements but does not replace the medical model that has existed since the 1930s.  The same is true for the embrace of the idea of neurodiversity.  We mustn't confuse the reality of disability for many of us with the fact that some of us have rare gifts too.  Said another way, we should embrace our exceptionality but not deny that the suffering and challenges many of us feel are also very real.  

For a wide variety of reasons it’s hard for individuals at various points on the autism spectrum to see and appreciate the positions of others in the community.  Yet we must accomplish this if we wish to form a coherent group that can use the power of our numbers.  The way we are today outsiders see us advocating for so many disparate things that it’s hard to figure out what we – as a community – want.  If we speak in one voice we can ask for a range of things, and get them all.  Individual voices, speaking alone, will continue to accomplish little.


Rather than attack each other, our energies will be better spent building community, and pushing legislators, insurance companies, and researchers to actually help solve our problems.

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 & 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. 

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.