John Elder Robison on "Autism" and "Neurodiversity"

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That is a question many people are asking, as neurodiversity pops up in workplace initiatives, college programs, and government policy. Is it shouldering aside autism, or is it something else? Autism is a doctor’s term for a neurological disorder that impairs communication and behavior and is often associated with intellectual disability and other serious disorders. Neurodiversity is the idea that there is a wide range of neurological diversity within what might be called the “normal human range,” and that includes a significant percentage of what doctors diagnose as autism, ADHD, dyslexia, PDD-NOS, and other neurological conditions.

Autism and Neurodiversity are fast becoming two paradigms with which to see a person’s neurology. Autism uses a medical lens to describe disability and the underlying biological foundations. Medical people are beginning to recognize that autism can also confer cognitive gifts in some, but their approach is primarily deficit based. It is, by definition, "what's wrong," not "what's right."

Neurodiversity is a word that has emerged from the autism community, largely as a response to the way mental health diagnoses like autism pathologize a wide swath of population. Neurodiversity – with its premise that a range of neurological function that includes some examples of autism, ADHD, etc. – is normal and healthy is very appealing to those who see themselves as both gifted and disabled.

Individuals who see themselves as primarily disabled are more likely to embrace the medical perspective. In addition, family members who live with very disabling autism are likely to see it as a serious medical problem, and not as healthy diversity.

It’s important to recognize that those are reasonable perspectives for different people. You’d think both could exist side by side, but many people in each group disagree. Those who consider autism a serious medical problem believe neurodiversity trivializes autism. They are fond of dramatic comparisons, asking if behaviors like head-banging or feces-smearing are “healthy neurodiversity.”

Neurodiversity proponents point out that such behavior does not define the lives of most autistic people, and they say autistic people are all better off with a more inclusive and supportive society, which is a principal goal of the emergent neurodiversity movement.

Neurodiversity proponents also believe that the neurodiversity concept is a better way to understand a person who might otherwise be characterized as having half a dozen additional “milder” psychiatric diagnoses like anxiety, depression, OCD, or sensory processing disorder. Neurodiversity proponents often wish to step away from the negative stigma that comes with psychiatric labels.

These paradigms often take shape in teens. Some with very significant disability – often called high-support persons – will not be able to graduate with an academic diploma; getting a certification of completion instead. Those people will face the greatest challenges continuing to college or getting a job and will generally receive disability supports and services from the state. Unemployment rates are high, but programs like Project Search and Autism at Work are showing how many members of this group can find employment. Some, however, remain too disabled for work and it’s important they not be forgotten; provision of a safe and good quality of life should be a basic human right, but we have a ways to go to get there.

Teens with lower support needs but without striking intellectual exceptionalities make up the largest part of the population. They are the closest thing to an “average person” in this community and as such, often reject ongoing disability supports. They may feel special ed in school was degrading and want nothing to do with it in adulthood. They may just want to leave all their labels behind and go into the world as a “regular person.” Those people are not embracing neurodiversity so much as they are trying to reject autism and all diagnostic labels. Some of them succeed; many others crash and present a new set of support challenges.

High schools like Orion in Livermore, California and colleges like Landmark, in Putney, Vermont, are developing social-academic programs to address this problem, and they are finding that targeted supports in the latter years of high school and the earlier years of collage can facilitate that transition.

The desire to stand on one’s own is universal and a person with exceptional abilities in one area may take it for granted. However, independence can be derailed by social disabilities and executive function challenges, both of which can be helped with emergent therapies. That said, adults must want and seek the help, and that is often a problem for young adults for whom everything was formerly provided through a school IEP. Getting help on one’s own may be an insurmountable barrier. Social problems like that are targets of neurodiversity activists.

More and more, teens who see themselves in a positive light are embracing neurodiversity as both a way to see their own lives, and as a civil rights perspective. This is particularly evident in the student neurodiversity groups at colleges like William & Mary or Drexel. Students who have the skills to gain admission to first-rank universities tend to have milder impairments and greater cognitive gifts, and in that sense they may represent a minority of the population but thanks to position and communication ability, they have an outsize voice.

An outside observer could be forgiven for not seeing any similarity between a neurodivergent physics student and an autistic person who could not speak or care for himself. Yet, as the medical models show, those people often come from identical genetic stock and whatever differences made them autistic, may be present in both. It remains a mystery why the range of expression is so wide. The ways in which those different individuals see themselves, and the way the world sees them are very different. Yet both may carry the same medical diagnoses, and both are examples of neurological diversity in action.

I think it’s clear there is a place for both paradigms, and which one applies to a particular individual depends on personal choice. A person might look very disabled but want acceptance and support of the neurodiversity paradigm. Another person might look very functional but feel disabled and want relief of suffering. Furthermore, a person might accept some aspects of themselves as examples of healthy diversity while wanting relief from other issues like chronic pain or epileptic seizures.

So, in summary, autism is not becoming neurodiversity. Neurological diversity has been a fact of life as long as humans have existed. Some diversity is healthy, other is uncomfortable or even life-threatening. Diversity exists because it serves an evolutionary purpose. Autism as a description for a particular set of disability traits is a 20th century construct of doctors. Autism itself has been a part of human neurological diversity forever, but the naming of it is recent. Autism is one form of neurological diversity; one that by definition must present significant disability for a person to be diagnosed.

As a disability diagnosis autism carries a significant stigma. The concept of neurodiversity does not, though it should be self-evident that the range of all human diversity extends to the point where it becomes pathology, and ultimately, un-survivable.

Some people challenge the idea of diversity by saying cognitive differences don’t all spring from inheritance. Some come from injury or disease. While that’s true, those are also natural processes and if the result is the same, what does it matter? While we might seek to cure or prevent sources of injury, others arise to replace them. The cycle of birth, growth, injury and eventual death is unchanging. Through it all, we should hope for the best quality of life, and equal rights and acceptance.

It is my belief that we need both neurodiversity and medical autism paradigms, and there is no right or wrong answer. Both are attempts to explain states of being that have always been here, and probably always will be.

I think he summarizes a lot of the conflicts well. A lot of people with an outsized voice in the "disability" camp are alarmist and offensive to those of us seeking acceptance ("end autism now" campaign and Autism Speaks). A lot of people in the "acceptance" movement are quite high-functioning and sometimes don't relate to the day to day struggles of many of us, or over-emphasize the savant abilities that most of us don't have.

And many of us who end up receiving the diagnosis are disillusioned with the support services that we were given, and aspired to assimilate into NT life, only to fail. And "Autism" is not "neurodiversity" in and of itself because it's a 20th century construct designed to provide treatment to those who were by definition disabled. I'd also add that I think that many of us with an "ASD" label are quite different from each other as well and may share some symptoms from criteria B (sensory sensitivity, hyperfixation etc) but criteria A (aka social deficits) are primarily defined by not being like NTs, which means how exactly we socialize and what our deficits are can vary infinitely. We are not one monolithic group with one monolithic underlying "disease".

I'm curious to see Robison's take on what the neurodiversity movement's strategies for acceptance are.

We do care about parents whose kids have high support needs. We just want them to be able to listen to us, to consider that being disabled is not a bad thing, that it isn't a wrong way of being.

Yes you summarised the situation with the label quite well. I think neurodiversity is a different paradigm when applied to the diversity in the neurotypical brain Vs the spectrum of diversity in the autistic brain. Like comparing diversity between deserts and rainforests.

I am, however, now curious about the perception over the power of "autism speaks" (which appears to be dominated by parents of severely autistic children who are looking for cures) and their influence. Outside of the United States such groups (at least here in Australia) are really non-existent.

In Australia the Aspergers associations have retained their separate communities/identities (despite changes in DSM) made up of parents and children/young people with high functioning autism. These groups focus on integration of their children into the wider NT society. Almost all of their kids are in mainstream schools with reasonable prospects for higher education. Adults with Aspergers also seem to be active here in meet-ups from what I can see on the social forums on WP.

For children on the moderate to severe side of the spectrum they seem to be put in the disabled sector so for example special schools and the children's future is somewhat bleak either living at home with parents or group/residential homes with residential care or institutionalisation for severe cases.

I find I can't relate to either group particularly well as my daughter is cognitively high functioning but socially lower functioning. She is in mainstream education but in high-school is focusing on independent living, trades and basic work skill as we have opted not to stress her with mainstream curriculum (although she is capable if she ever develops an interest in future). Her school accommodates individual learning plans (ILPs) but not every school does.

I have a feeling that many higher functioning folk over-catastrophise groups like autism speaks who speak largely for parents of mod-severe kids and adults. I sympathise more with their plight more than I sympathise with folk who are able to integrate into mainstream society (that doesn't diminish that everyone on the spectrum has to struggle in some way but hey! it's all relative). At the end of the day we don't live through the prism of public perception. Each of us as adults need to "fly our own flags:" and make the best of the resources/support that are available and not concern ourselves over what mainstream society thinks of autism.

We need to be mature enough to understand that the goals and aspirations of people differ whether across the spectrum (high Vs low function) or within a particular label (e.g. "high function"). The label can be convenient to attribute difficulties in our lives and sometimes it can be a curse.

My 14 yr old has decided she doesn't like the label of autism at all (she is aware its a disorder) and tells people she isn't autistic. I smile at her wisdom at such a young age. Who wants to define themselves by a social construct.

A lot of low support needs Autistics act like any kind of treatment whatsoever is awful, without considering that their experience with what we call AS can be markedly different from the children of the Autism parents. Then you get the whole, "You're speshul and have super Autism abilities, love who you are!! uwu" rhetoric from very successful Autistics that isn't terribly helpful for most of us lol.

This is why the disability rights model of autism fits best. It gives us the respect and opportunities we need, while still respecting our limitations that nearly everyone can agree on.

According to the National Disability Insurance Scheme in Australia my autistic daughter isn't disabled (so I haven't got any financial support) but I know somebody who's son has mild Aspergers/ADHD who is getting full insurance.

A lot of confusion and angry parents...