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. 


Jean Sunell said…
Great article, John. I totally agree. WOOF!
jonathan said…
While I agree that what you are saying is a good intention, I don't believe that it's realistic. As Roger Kulp says, the divisions in the autism community are too great in the autism community for all sides to come together and work for the common good. Many NDs believe that acceptance and accommodations will solve everything. Those who believe in the medical model of disability will want research for treatments or a possible cure. While all the sides may have a few common goals, such as acceptance and no discrimination, the goals are too diverse for all parties to come together.

Even when autism speaks acquiesced to the basic demands of neurodiversity that they no longer have a goal of curing and preventing autism and they put two autistic people on their board of directors, they still weren't satisfied and still claim that AS was a hate group whose only goal was to exterminate them, which I believe proves my point.

It's like the Israelis and the palestinian arabs. There are some issues on which two sides will never compromise on.

I will never agree with neurodiversity or with what autism speaks has recently done.

Everyone working together for the common good is a nice dream, but I don't think it's gonna happen.
Unknown said…
Well done (Samantha Craft of Everyday Aspergers) I agree. Cooperative approach and one voice. It is particularly hard when autistics call out or shame other autistics. Something I have written about and seen too often. Much can be accomplished through rational approaches and respect for others' perspectives and hardships. You bring up many good points that could each individually lead to long discussions. I myself have several coexisting physical and cognitive issues that make each day a challenge. We need more support and understanding, and less anger and division.
Just to be clear Jonathan, you cannot "disagree" with neurodiversity. It is a biological fact, there is no disputing that intra-species variation exists in every single species on the planet, and the human species is no different. You disagree with the neurodiversity paradigm. This is not "semantics" either. You cannot disagree with scientific facts. But the neurodiversity paradigm arises out of this biological fact, and the neurodiversity movement seeks acceptance of neurological variations in all their forms. I don't care why you disagree. We likely will never agree on anything, I promise you that. But please get your facts straight. Thanks.
John Robison said…
Roger, thanks for your comments. I'd like to address your proposed solutions, You first mention removing bio marker-identifiable conditions from the autism spectrum. That is the current practice and I expect it will happen as tests are developed and proven out, We will then have more narrowly defined conditions like Fragile X that are identified with a bio marker test, and said to produce autistic symptoms along with whatever effects they have.

The argument for not diagnosing your so-called higher functioning people with autism presupposes that they would be found to have a different condition, and not what we presently call autism. So far the evidence is against that. For example, people like me show up as autistic in many biomerker studies and in those results I'm right alongside people with much more major impairments. That being the case, what would be the argument for different labels when the biology says we're the same?

I think a lot of this will resolve with the development of more biomarker tests.

Your third suggestion - to say autism is not a disorder - may be a matter of semantics. For most of us autism is and always will be a disability. Whatever gifts I possess, I am always aware of how autism also disables me. I would not call myself disordered, but I would say disabled. To change the term to autism disability would be reasonable, but to change it to "difference" is not in my opinion realistic, for autism is not just a difference. For some it's mostly disability while for others it's a mix of exceptionality and disability. Per the diagnostic standards if you do not have a degree of disability you are not autistic.

I agree with you that more people participating in genetic testing would be beneficial both for them and for science.
Coby said…
Excellent article. Thank you for summing that up.

I do wonder about the comment "Per the diagnostic standards if you do not have a degree of disability you are not autistic." Which came first, the diagnosis or the condition? Who decides where to draw the line, and why?

Let's take the hypothetical example of people who have the genetic ability to see a seventh color, beyond purple in the ultraviolet range. But unfortunately this ability leaves them susceptible to developmental problems in the womb and as they grow up. Some of them regress and lose the ability to see other colors. Some can't see red. Some can't see yellow, orange, or green either. A few of them can only see the seventh color (we'll call it oinops).

Where do we draw the line? Are only those who can't see warm colors disabled? Or those who can't see some color that others see, like red? Maybe we will only provide services to those who cannot see the normal spectrum of six colors, and only see in oinops, black and white.

My experience has been that there are a lot of people in my family with a degree of disability, but most of us just present some eccentricities and some exceptionality. We display what you call the broader autism phenotype.

The thing is that we all relate to each other and we all learn from each other. Just because we don't have autistic handicaps doesn't mean our minds don't run along the same rails. I would say figuratively that all of us can see in oinops, even though some of us can also see all six typical colors.

It would seem to me that we need to differentiate between the sources of the autistic temperament itself and the handicaps that develop during gestation and the early years. My dad told me that his diabetes was due to a genetic susceptibility plus some life choices and events. I think the developmental half of the equation is where we should be looking for the causes of some of the more significant handicaps.

I really appreciate this article. I agree with the commenter who pointed out that the AS controversy has as much to do with autistic people having misperceptions and meltdowns as it does with Entie insensitivity. But I am sure enjoying this autistic adventure, as we have been living it. We sure have learned a lot from each other. Can we do some more of that?
John Robison said…
Coby, to answer your question I think it's clear from the history that the condition long predates the diagnosis. George Frankl and Anni Weiss were Asperger's teachers in the Vienna clinic, and Frankl later shared his insights with Leo Kanner in America. They notes that autistic behavior was observed for a long time before being specifically characterized.
Fysio said…
Wow, this is exactly what I'm trying to explain to people on internet: You have syndromic and idiopathic autism. Not. The. Same.
alonsy said…
If Asperger's was not on the autism spectrum I would never have been diagnosed. I would never been able to learn about my symptoms, learn new skills and I would still be living with my parents. Some of us don't make it like others do. We don't have those gifts.
Even if Aspergers was a separate diagnosis I doubt I still would have been diagnosed because it wouldn't have the popularity it has had. The symptoms are still very similar between autism and HFA. I have severe sensory problems, gut problems and have always seen myself as more classic than AS.
Hans Asperger also discovered autism first. The world has just grown up on the Kanner description which I think was too negative. All those kids growing up in institutions, the higher functioning being misdiagnosed as schizophrenic or bipolar and given harmful drugs they didn't need, parents forcing their kids to be normal, even Marie Ann Kennedy's lobotomy might not have happened. How many AS kids were given lobotomies or sterilised? How many people could have avoided mental health issues if autism wasn't looked down at so much and had a broader spectrum? Your perfect model for autism would guarantee these horrible things that happened to autistics throughout history would continue.

Now I'm not major in the neurodiversity camp, I just do the best with what I've got. But neurodiversity has helped employers see the autism advantage and quite honestly that's the only way I could ever get employed.

I also don't understand why the autism community can't have unity. We just have to open up our freaking minds and get outside of the world in our heads. If a far left person like me can somehow detach from all the left-wing sensationalism and learn to see a conservative's world view then surely parents and advocates can shake hands.
Lori Hogenkamp said…
Hi John Elder Robison,great post, however I think, if we see autism-- at its heart as a stress adaptation disorder which at its phenotype core is a difference in information processing and which ultimately effects communication first and foremost when impacted by stress--- then we can see that different levels of the spectrum are looking for different levels of stress intervention.

Some are looking for outside changes of social interventions (acceptance since isolation is the worst and most devastating form of oxidative stress), some are looking for sensory interventions (reducing offending stress-producing sounds and lights and also being allowed to do stress-reducing stimming and sensory diets). Whilst others are looking for internal ways to reduce stress such as nutrition, medication and sensory (OT) and play therapies. Everyone is always looking to be their best versions.

Being treated like you are broken, instead of as an amplified personality. And trying to be forced into being a "normal information processor" (a stoic personality which we can never be) is part of the harm and the mistakes of our current scientific framework (of assuming "best" is the average). Our current scientific model does not take neurodiversity into consideration. A linear model reduces that factor to the average, and the average obfuscates the needs of the periphery.

You are right, when the scientific community have no answers (andusing the wrong framework of science) this makes so many people so desperate for answers and lost in guesswork. I hope we do better.

My suggestions are within the working theory of "Peripheral Minds of Autism". And can be found on my blog.

Peripheral Minds of Autism
Fysio said…
I will accept whatever concept you have about autism, as long as you are autistic and accept me as I am.
UplayOnline said…
Wow, this is exactly what I'm trying to explain to people on internet: You have syndromic and idiopathic autism. Not. The. Same.


John, could you point the way towards any online examinations of these biomarker studies you're referencing? I'm interested in seeing anything about this. I really wish more researchers, like those who were involved in the decision to create a single diagnosis in the latest DSM, would weigh in on these debates. What does the research actually say about real commonalities between all of us on the spectrum versus those who think the diagnosis unfairly favors the so-called "high-functioning."
John Robison said…
Greg, if you go to the IACC website ( iccc.hhs.gov ) you can download the summary of advances and the annual reports on autism research for the past few years. Biomarker studies are one area of focus. You can also search on the PUBMED database, which is a free index maintained by NIH.

Hundreds of genes have been implicated in autistic development. There are some genes associated with very severe impacts including ID. Other genes are "across the board." Same for some of the other studies. This past year, for example, a study found an association between what infants chose to look at (people or mobiles) and later autism diagnosis, and there again the level of impact was across the board. That's in the IACC reports.

With respect to "unfairly favoring" the upper end of the spectrum the answer is that the broader criteria for diagnosis are supported by the science, and what's happened is that now you have a larger pool of people with less visible disability overshadowing the formerly small pool of more visibly disabled individuals. I don't think it's a matter of fairness so much as evolving knowledge

That was very well said. It is a cohesion of many of the thoughts I have had for some time. As a parent whose child is intellectually bright without testing that way and who will surely be independent but needs a lot of understanding for his communication issues, who has struggled mightily with anxiety, processing, rigidity, and social misunderstandings, but who continues to persevere, progress, bring us joy, and bring a unique perspective on the world to those who take the time to know him, I have looked at all of the sides in this issue. You are absolutely correct in your assessment of the situation as it now stands and I appreciate your willingness to speak to the community as a whole. If we joined together with respect and some common goals, just think of the good we could all do.
John, Thank you for once again putting into thoughtful words what I have tried to explain to others. Your insights and writing have helped my grand daughter and I navigate to a much happier and satisfying life for her. Accepting her uniqueness while encouraging her to relate to the world in ways that increase both her enjoyment and independence. I don't know how many lives you have changed and improved-but I know how profoundly you have helped us.
Thanks for providing the links to that information. I am in full agreement that the more broadened diagnostic criteria makes sense. Some people, however, seem to be under the impression that all signs point to another coming split. One researcher at IMFAR describes autism as a "Snapchat diagnosis" that will disappear. Can't help but be worried hearing about that. Especially given I don't have access to the minds of the scientists who will decide how it is diagnosed.
John Robison said…
Greg, I can't speak for any particular scientist but I think what's referred to is the idea that biomarker tests may reveal a dozen genetic conditions that result in autistic behavior (like Retts or Fragile X) I don't think many people imagine the ASD diagnosis itself will disappear.
Roger, thanks for the link. But I would like to point out that I am one of those neurodiversity paradigm proponents you are in fact talking about. And moreover, your claims against them are based entirely around a straw man. I do not know of a single proponent of the neurodiversity paradigm that willfully ignores the realities of disability, often much greater than their own. I repeat: nobody does this that I have ever been aware of. This entire argent against neurodiversity activists is based on deeply rooted misunderstandings of what it is we are arguing for. I'm not naive enough to deny that there are some who actually do believe that autism is nothing but rainbows and unicorns, but I don't know anyone like that and those that do believe that autism is somehow exclusively a brain difference that should only be celebrated is doing us all a great disservice. And before you just assume that I'm another one of those straw men, my autism is not all good. I'm reminded daily that I have a disability in ways that I need not explain to anyone in a comment section. And moreover, my son is autistic, non-speaking with various developmental delays, you know, the "low-functioning" ones that you hold up as "real autism." Sorry, but even having to deal with "low-functioning" autism daily is not enough to convince me that the neurodiversity paradigm is wrong. You have to properly understand it and few opponents of it actually make ant effort at all to understand it.
Fysio said…
Totally agree with Greg Love here. Low and high-functioning labels are damaging as they carry stigma c.q. begin 20th century with the grading scales for 'morons'. Furthermore, Neurodiversity advocates the likes of myself, ASAN, boycott autism speaks, Steven Silberman, Samantha Craft etc etc are actually part of a greater movement fighting for disability rights (cerebral palsy, autism, NLD, non-verbals etc etc), LGBTQ rights, afro-american autists' rights, etc etc. - just go their sites, FB pages, meetings.

The only people seeding discords are the so-called 'experts' who don't have the humility to reflect on the fact that their very own certitudes had evolved with time in the past 30 years. They are now the brake to acceptance and inclusion as they still dwell in ableism and research for cures while maintaining ambiguity as to what autism is.

Autism is two things: "primary (idiopathic)" autism/adhd (stereotype: families with a lot of scientists and engineers), and secondly: any conditions or circumstances which causes "autism-like" symptoms: Rett, Fragile X, Angelman, Deletion Syndrome, Willis-prader but also any source of brain tissue damage, damn even sleep deprivation can make you hypersensitive to stimuli while reducing your brain's RAM memory!

All in all, everyone's right in his/her own reference frame, let's just please look at the moon, not the fraggin' fingers.
Ralph Doncaster said…
I, like Roger, disagree that ASD is a communication problem. However it's not because I espouse a more limited definition. The lack of social instincts is not a communication problem. For example lack of deference to authority is a lack of the neurotypical submissive emotion rather than a failure to communicate the presence of that feeling to others.
John Robison said…
That's an interesting example you chose, Ralph. I am certainly that way myself. You say that's not communication based but I'm not so sure I agree. Might it be that we are oblivious to the signals and cues of others, and so we never develop a sense of connection to them. That would of course include deference.

If an NT kid sees others showing deference to, say, an adult they may mimic that behavior. Many of us would not, producing exactly the behavior you cite with communication disability as its foundation.

While it's easy to cite examples of situations where communication disability of this sort is problematic it's also easy to find examples of where it's beneficial which in my opinion is likely why is persists in the human genome.

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