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,
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
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
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
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
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
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
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
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.
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.
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.
I am aware this is the definition as written out in the DSM,however I would argue this very definition of autism is,at its very heart a wrong one.It is a definition of autism that favors the very high functioning,and it is this very definition that is the reason we have seen such an explosion of the diagnosis of high functioning autism in children and adults.A diagnostic phenomena,that gave rise to the neurodiversity movement in the first place.There is much that is missing from the definition of autism that is both discussed in the DSM,and advocated by those who believe in neurodiversity,that I believe should be added to the core definition of autism.Thing such as:
Developmental and language regressions.Loss of milestones,loss of skills.
Learning and intellectual disabilities.
Self abusive behavior,such as head banging.
Developmental delays in areas beyond language.
Wandering and eloping.
Dangerous sensory disorders,such as PICA.
Among other issues.And that's not even touching any of the medical problems.
One might easily argue had symptoms such these been included in the diagnostic criteria for autism,there would be a lot fewer people diagnosed with autism today.I would argue that wouldn't be such a bad thing.Perhaps it was a serious mistake to consider Asperger's a form of autism in the first place.Maybe it would have been better for everybody had Asperger's always been considered its own unique diagnosis or condition,apart from autism.
You say 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. I say this is unrealistic and naive.It is the American Psychiatric Association,and other governing bodies,who are to blame for the current divisions in the autism community,by creating a diagnosis based solely on a small subset of behaviors,with no real biomarkers.Behaviors that could easily be applied to any number of neurological disorders.They have created a Frankenstein monster of a situation,that cannot be fixed in its current model.Radical change is needed.
I see three possible solutions.
As genetic and congenital causes are found for certain causes of autism,officially remove these disorders from the definition of autism,as was done a few years ago with Rett Syndrome.Especially if we are talking about single gene forms of autism,such as those caused by cancer genes,or single biomarker forms of autism,such as those caused by inborn metabolic disorders.There is no reason for Fragile X to still be considered a form of autism.
As harsh as it may sound,stop diagnosing higher functioning people with autism,as has been proposed in the UK,and give these people another diagnosis instead.
Do as many in the neurodiversity movement have suggested,and remove autism,from the DSM,and say it is no longer a disorder.Especially in the higher functioning forms,with few,if any comorbidities.Part of this,would be encouraging families with more profoundly disabled members,to undergo testing for underlying disorders,including whole exome and whole genome sequencing,and have someone offer financial aid for such testing.I know there are not enough families who have looked into underlying causes for autism,and too few doctors who are even aware of the advances in finding these causes.
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.
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?
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.
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
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
Like it or not,our opinions are shaped by our life experiences.John is one of the few public advocates of neurodiversity that seems to get it about the severity of the entire spectrum,and the difficulties people all across the spectrum face.I greatly admire him,because of this,but John seems to be the exception that proves the rule.
If your only experience with autism is as a parent of a partially verbal child in their 20s or 30s,who functions on the the level of a toddler,is still in diapers,who smears,or eats,their own feces,and engages in self-abusive behavior,you would tend to have a hard time grasping,or caring,about the problems people with HFA face in college,or on the job.Likewise,many higher functioning people,only talk about their own neurotribe,to use Steve Silberman's phrase,and have little or no concern for the more profoundly disabled.To concentrate your efforts more towards others like yourself,is simply human nature,which is why I say the differences along the spectrum are too great for there to be ever be any unity.
Greg Love,probably my favorite autism blog,is from Paul Whitely,a researcher in the UK.For the last six years or so,Whiteley's blog has covered all the developments in autism science.There is so much more than Whiteley can cover in his blog,so the rest is in his Twitter and Facebook feeds.The Twitter feed is posted in a sidebar in the blog.
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.
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.