Division in the Autism Community – What’s Next for Us?
By John Elder Robison
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 syndrome – 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; 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. 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 the money 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 embracing 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.
BIO: 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 U.S. Department 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, Va., and a visiting professor of practice at Bay Path University in Longmeadow, Mass. You can reach John through his website at www.johnrobison.com