Thoughts on the Autism Community's needs

I’d like to take a moment to offer some thoughts on the written public comment submitted to this November 2015 meeting of the Interagency Autism Coordinating Committee.  Prior to this meeting we received 71 comments, which are available online at the IACC site, iacc.hhs.gov. This reflects the long time that has passed since our last meeting.

The overriding theme of the comments is dissatisfaction at how little we have accomplished. Every year we publish a summary of advances, but very little of what we describe actually benefits families. Parents have seen children grow to adulthood while we’ve delivered nothing new to help them.  If you take away one thing from the comments it would be this:  We would be very wise to significantly shorten our research-to-consumer translation timelines and focus on therapies and treatments that will be impactful soon, not to the next generation.

We’ve spent millions of dollars and years of time look for the foundation causes of profound disability.  We’ve kept that primary course even with the emergence of knowledge that autism is not a progressive disease, and for many of us, the cure model is not applicable. Yet autistic people are stressed and suffering.  What’s wrong with that picture? We need research into benefits we can use now. 

Research into relief of suffering from various causes, and research into teaching accommodation skills is often fundamentally different from basic research for a cure.

To draw an analogy, in the years after WWII, one group of doctors studied the cause of polio, while another group developed better wheel chairs and braces. Today, we recognize that both groups made great contributions.  Thanks to basic research, polio is no longer an American public health problem, yet the accommodation work the other less well-known doctors did finds even wider use today for other disabilities.  The same is likely true for work to be done in autism accommodation.

The next point I’d like to speak to is the large group of commenters who express the view that vaccines cause autism.  In the previous IACC, when I saw the very high percentage of vaccine commenters, I asked the committee if we have research into what the concerns of autistic people and their families are. Indeed we do have such research, and possible vaccine injury does not top the list, even though it tops the list of comments here.  Research shows us the main community concerns are solving the problems autistic people and their families live with today.  Indeed, many commenters who raise the vaccine issue also discuss quality of life concerns.

Several commenters describe autism as an emergent epidemic or a fast-growing public health crisis.  This week we have a new National Health Statistics report that puts the prevalence of autism at 2.25%, a striking rise from the 2013 estimate of 1.25%.  But is that evidence of more autism?  The authors of the study point out that the total prevalence of all developmental differences was constant across survey years.  So the increase of autism reports was matched by a decrease in other conditions.  In a similar vein, we have debated for years how much – if any – real increase in autism exists, as compared to increased awareness and expanded scope of definition.  I think this is a area for study but the most recent report is not in my opinion cause for alarm as it probably represents a change in reporting, not a change in underlying autism prevalence.

Recent studies like Brugha have shown a fairly constant prevalence of autism in populations over the past 70 years, when everyone is screened with the same current tools.  Those studies also highlight the many alternate diagnoses older autistics were given, and the fact that many had no diagnoses at all. That said, those studies do not rule out the possibility of some recent increase from other causes, and when we look at the sharp rise in other childhood immune issues like peanut allergy and bee sting toxicity we would be wise to keep an open mind.

In the last IACC, we had a workshop on co-occurring conditions.  We recognized the reality that some mix of anxiety, depression, intestinal distress, and seizures affects the majority of autistic people – me included.  And there are other complications that are less universal but still common.  It’s time to address the reasons those things occur so often in autistic people and do something about it.

I think we also need to be open minded about how we address the myriad issues of autism. Some things will be best addressed by researching a cure (for example – epilepsy and profound intellectual disability) while other challenges (speech) may be addressed by technology as others (making friends) are addressed through learning and therapy and some (GI for example) may be addressed by diet and medication.  Societal accommodation also has a significant role.

Many commenters posit possible causes of autism – asphyxia at birth, mercury in vaccines, other unspecified environmental toxins.  At the same time, we confront research that suggests that a substantial number of autistic people come by our autism naturally, though inheritance of a stable set of genetic differences. How do we balance those things?  We have a very polarized community with one extreme arguing that autism is a social problem that primarily needs acceptance, and others arguing it is a medical crisis that needs a cure. Might the spectrum contain elements of both? Part of finding balance is recognizing that we are probably dealing with many different autisms, or many foundations for similar observed behaviors.

As an autistic adult and member of this committee, I believe we have a duty to identify and remediate all causes of neurological injury that cause autism-like behaviors.  I also support the genetic and basic biological research but I want to be clear – I see that standing beside a primary mission of research to maximize quality of life for today’s autistic population.  I hope we can agree on the primacy of that mission. 

We must recognize that taxpayers fund our work, and we are morally responsible to heed their wishes when we spend their dollars.  Those taxpayers want action now, and most of our present research does not offer the potential to do that. We must shift a significant part of our budget to development and deployment of therapies that will help in three years, not thirty. 

In the last IACC, I stressed the need to shift additional focus to the issues of autistic adults.  Autism is a lifelong condition, yet our research is still almost exclusively focused on children.  At any given time, two-thirds of the autistic population are adults and it’s high time that group’s concerns were addressed.  Why are autistic adults at greater risk of mortality?  What are we going to do to help the large unemployed and underemployed autistic population find productive work?  Can we adapt therapies that help teens make friends to adults?  Can we develop a workable housing plan for when parents are gone? There are many, many questions and few answers.

I believe another of our top priorities must be to address causes of death from autism.  With the knowledge of today, those risks come in several forms:

-       Suicide, for bright socially isolated autistics – particularly teens

-       Death by misadventure when more impaired autistics wander and drown, or die in accidents

-       Death by neglect, when language impairments prevent autistics from communicating life-threatening medical issues to caregivers.

-       Death from complications of seizures.

There is another adult issue that needs to be addressed, and that is respite care for families. The Internet is filled with stories of exhausted parents who are pushed to the breaking point and beyond by the stress of family autism.

Those of us who have the honor of serving on this committee should recognize our duty to serve the entire autistic population – not just the part of the spectrum that touches our own lives.  In particular, I believe those of us with strong voices have a duty to speak out for others who cannot express their own concerns to this committee.  The group that best exemplifies this is our minimally verbal and non verbal autistic population.  As more and more autistic self advocates speak out, I worry that those who cannot self advocate will be forgotten.  It’s up to us to ensure that does not happen.

Parents of minimally verbal autistics live in fear for their children when they are gone.  They live in fear for their children when they are out of their sight.  They are right to be afraid, and it’s of great concern to me that we have done so little for this group.  Let’s be conscious of all autistics, not just the ones who speak before us.

I believe this touches on a limitation of this committee and the agencies that research autism.  Relief for minimally verbal people may not come through medical science.  Rather, it may come through the work of engineers and others not traditionally associated with medical research. 

I’ve offered you a lot of thoughts in this presentation.  I hope you share my sense of urgency as regards delivering help to families and autistic individuals.  I also hope you see that we don’t have an all or nothing situation here.  It’s a question of balance, and pulling together.

At the same time I hope we can all push for a more accepting and accommodating world.  Neurodiversity initiatives at schools like W&M are making higher education more accessible to autistic people, and we are teaching all our students the value of autistic people.  Employment initiatives like SAP and Specialisterne are leading the way in employing autistic people in today’s high tech world.  I hope this is the start of a much larger groundswell of support and acceptance.

John Elder Robison

JR note - This text follows my presentation fairly closely.  There is some material here that I did not read to the group due to time constraint. 

All words and images (c) 2015 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 the forthcoming Switched On. He's served 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.  

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.