Thoughts on the role of the Interagency Autism Coordinating Committee, from an autistic person. Note that the views in this essay are my personal opinions only, and not the views of the committee or any government agency.
One role of this committee (IACC)
should be to serve as a bridge between the autism community and the Federal agencies charged with supporting that autistic people and their families.
We started by identifying questions to be answered and then reporting advances in autism research.
In the past three years a glaring hole has emerged.
From the beginning autism diagnosis and treatment focused on children. Autistic behavior was first characterized in children in the 1920s and 1930s. By 1943 clinicians had observed that autistic symptoms were often present from the beginning of life. At the same time, regression had also been observed in some kids.
By 1950 Leo Kanner, George Frankl, and others had recognized the neurobiological basis of autism that most scientists accept today. As such, autism was recognized as a lifelong condition. Kanner and other pioneers of autism diagnosis would later take pride in following the development of some of “their” autistic children into adulthood.
Sixty-some years have passed since autism was recognized as a neurological difference. In that time countless child therapies have been developed but virtually nothing has been done for adults. In the modern era this committee began with a focus on autism in children. It is just in the past few years that we’ve begun to recognize adult needs.
Autism is unique in medicine, in that the support needs of adults are different from those of children. When we look at other lifelong medical conditions we see tools and therapies that help across the lifespan. For example, wheelchairs or artificial limbs are of the same use to adults and children. In many cases, medicines that help children also help adults.
That is sometimes true for autistic people too. Therapies that help us calm and self regulate can help children and adults alike. But adults have unique problems that children don’t share. Job coaching, for example. Recent research has shown that autistic adults have many previously unknown health vulnerabilities, and little is known of them. Finally, autistic children are assumed to live with their parents. Where are autistic adults supposed to live, when our parents are gone and we are not able to remain self-supporting and independent?
Over the past decade, we have spent over a billion dollars on autism research. While some of that research will surely benefit families of tomorrow, very little of it will benefit those of us living with autism today. It is my feeling that we should divide our efforts and follow a two-pronged approach when we allocate research funds for tomorrow.
We should continue our efforts to unravel the biological foundations of autism. We’ve already figured out that there are probably not one “autism” but rather hundreds or thousands of “autisms” . . . different pathways to a similar set of observable symptoms. That may lead to many different treatments for the most disabling aspects of autism. I hope we also find ways to relieve the many co-occurring conditions that plague autistic people and cause suffering and early mortality.
At the same time, I believe we should devote a significant portion of our research budget to develop tools that maximize the quality of life for those of us living with autism now.
In other words, I think it’s great that we may find a drug that helps relieve sensory overload for the autistic people of 2031. There’s still value in developing headphones or quiet spaces to help the autistic people of 2018. We can do both, and we should. The promise of a drug in 10 years is not what a person who suffers today wants to hear. It’s within our power to do both, by following parallel paths – one long and the other short. One path may be medicine based, while the other relies on electrical engineering.
That’s also an important point – we first saw autism as a medical issue. Now it’s clear that practical assistance for autistics may come from chemists, electrical engineers, psychologists, computer scientists, and a host of other professions. We need to bring those people into our community, and into these processes.
We have – in my opinion – lost sight of our duty to the American people. That duty is to deliver tangible timely benefit to the autism community. By focusing on the long term, we have effectively ignored the current plight of millions of Americans in the hope that “we will solve this problem for the generation of tomorrow.” By focusing on medicine we have failed to support technology based aids that could be delivering real value today.
I think this happened with the best of intentions. We first approached autism like smallpox or polio – as a disease to be vanquished. Why invest in developing supports for what was effectively a plague? Better we find a cure, or even better, a vaccine to head it off before it begins. That is the mindset most medical professionals brought to autism research a decade ago. Few hold that view today.
Today’s view is more nuanced. On the one hand, we see that environmental exposures can precipitate maladaptive autistic development, and we seek to identify those causes and head them off. At the same time, we see others who inherit autistic differences, grow up to be reasonably functional, and pass a form of autism on to their own children. Then there are the people who develop idiopathic autism – a disability with no known cause.
With such a heterogeneous population it should be clear that the “disease conquest” model we started out with is not the answer for every autistic. Yet that mindset continues to guide our research. The overwhelming majority of funding goes to basic research even as we recognize that there’s a significant portion of the autistic population for which that work is probably irrelevant. And their needs remain unmet.
The first step is to accept that autism is not what doctors thought it was, ten years ago. In fact it’s not any one thing. It’s many things. For each of those, we must ask – are we seeking a cure, or a remediation of disability or suffering? And we should also ask, is there a short term support or aid we can deploy while we pursue a greater long term goal?
The next step is to adjust our research goals with that in mind.
We must balance our duty to help the population living with autism today against the possibility of developing greater benefit for a future autistic population. That means recognizing and supporting autistic adults, throughout the lifespan. Autism is not a childhood issue that goes away. It is a lifetime condition.
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.
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.
(c) 2007-2011 John Elder Robison