This article is written in collaboration with fellow Aspergian writer, Humble Aspie. His response can be viewed by clicking here.
I have recently and sadly been made aware of a group of online trolls, some autistic and some not, who oppose the concept of neurodiversity. I found them when they decided to single me out on Twitter.
Essentially, they spend their time and efforts trolling Twitter, making fun of autistic people’s looks, talking about the “cold hard truth” without ever saying what this truth is, and accusing autistics of not being “severe” enough to represent autism. They represent neurotypical Stockholm Syndrome, essentially apologizing for existing. They have likened my autism to “stage 1 cancer,” where others are at more advanced stages.
Classy group with compelling arguments…
Below, I will post the article itself and respond in-line with my own comments.
I’m an American man affected by the disability autism. As a child, I went to special education schools for eight years and I do a self-stimulatory behaviour during the day which prevents me from getting much done. I’ve never had a girlfriend. I have bad motor coordination problems which greatly impair my ability to handwrite and do other tasks. I also have social skills problems, and I sometimes say and do inappropriate things that cause offence. I was fired from more than 20 jobs for making excessive mistakes and for behavioural problems before I retired at the age of 51.
Here, the majority of neurodiversity advocates would suggest that employers be made more aware of what it means to be autistic so that they stop pushing autistic people into professional roles which are designed to accommodate the neurotypical brain.
As a neurodiversity advocate, I empathize with Mitchell’s struggles. Autistic people like Mitchell could work if tasks were normed to suit their neurocognitive profile. The exigent stress of trying to do jobs for people who are neurotypical, particularly those which require rapid task-switching in a social atmosphere, causes the autistic person to lose momentum and optimism. Autistics can be invaluable assets to employers, and extremely dedicated workers, if positions are suited to their neurology.
We do not deny or downplay the struggles of autistic individuals. There is no doubt that he has suffered tremendously in his life. Neurodiversity proponents would say that this suffering was largely the fault of an intolerant society which would punish his autistic behaviors.
The girlfriend thing is not an autistic issue, but a personality issue. Perhaps if he’d stop making sexist remarks and would stop talking, excessively, about smearing feces, he’d had better luck with women.
Others with autism spectrum disorder have it worse than I do. People on the more severe end sometimes can’t speak. They soil themselves, wreak havoc and break things. I have known them to chew up furniture and self-mutilate. They need lifelong care.
Given this, could any reasonable person think autism is not an affliction? Could any caring person try to prevent sufferers seeking a cure? Common sense dictates the answer should be no. The reality is that identity politics has become so deranged that there is a group of people (both here and in the UK) who seek to prevent autistic people getting help, on the nonsensical grounds that it’s insulting to suggest they need it.
Autism is a broad spectrum. There are individuals who are not autistic who also engage in behaviors that are counterproductive to living a rewarding life, and interventions are tailored to the needs of the individual; however, autistic people are generally given a standardized form of treatment which is not helpful to them and which just shames their autism without regard for the distress that causes. Much of these behaviors are due to a poor understanding of what it means to be autistic and how to manage and support those who have autism. Addressing this is the purpose of the ND movement.
Often, self-harming and other negative expressions of emotion dysregulation are a reflection of emotional crisis and not having the proper tools to be able to communicate. Neurodiversity proponents do not suggest that these people do not need assistance. They advocate, instead, that autistic people be consulted as to what type of supports are most appropriate for autistics. For example, many autistic people have the ability to talk, but find it extremely distressing and difficult. Instead of being offered an AAC device or other communicative assistance measures, they are forced into traumatic therapies that force them to speak. Their autonomy is violated so that they are made to engage in interventions which cause trauma.
The movement is called the ‘neuro-diversity movement’ and its tenets state that autism is not a disease or disorder of the brain, but is rather an alternative form of brain wiring. Advocates of ‘neurodiversity’ believe that to be autistic is just to be different — like being black as opposed to being white, being a woman rather than a man, or being gay instead of heterosexual. Ergo the term ‘neurodiversity’. The movement opposes a cure for autism because why would you need to cure something that’s just another valid way of being human?
Autism is a naturally-occurring difference in the way the brain is wired, and autistic people have contributed to many of the greatest innovations of modern and historic achievement. Without autistics, we wouldn’t have the computers and software to even engage in this exchange. It means a divergence in the way the interconnectivity of the brain is distributed and the way certain parts of the brain develop. Often, this means that people have tremendous talents and skills but have deficits which are co-occurring. Working with autistic people to showcase and mobilize their strengths as opposed to focusing solely on their weaknesses has consistently demonstrated more positive outcomes for autistics. The neurodiversity movement seeks to influence the way autism is approached. Instead of forcing autistics to be more “normal,” or to appear more “neurotypical,” we ask that treatments work with the natural wiring of the autistic individual and not against it.
Some proponents of the neurodiversity movement do not believe that autism is a disability at all. Others acknowledge that autism is a disability, but differentiate between the medical model of disability and the social model of disability. The medical model of disability states that people are disabled because they have an intrinsic medical condition. The social model of disability states that people are disabled because society does not accommodate them well enough. For example, there may be a lack of wheelchair ramps, or notices not in braille.
Many parents of autistic persons and some autistic persons themselves (myself included) have expressed a desire for a cure for autism. This causes outrage among neurodiversity proponents. They equate a cure for autism with eugenics and genocide. Research has shown autism has a large genetic component and those who endorse neurodiversity cite selective terminations of Down’s syndrome pregnancies. They insist that the purpose of genetic research in autism is to develop a prenatal test to abort autistic fetuses. The only cure we need, they say, is an end to discrimination, which would solve, or at least greatly mitigate, the challenges and poor outcomes accompanying autism.
Many of those in the neurodiversity gang claim to be autistic and to speak for others on the spectrum. They use what a friend of mine called ‘the royal we’. They state ‘we’ don’t want to be cured — as if we all feel the same way. But in fact they are very different from the majority of autistics. Many on the spectrum can’t speak or use a computer. They can’t argue against ‘neurodiversity’ because they can’t articulate their position. They’re too disabled, you might say. In the wider group of autistic people, there’s a 4:1 ratio of autistic males to females, yet the majority of neurodiversity proponents are women. Many of them have no overt disability whatsoever. Some of them are lawyers who have graduated from the best law schools in the United States. Others are college professors. Many of them never went through special education, as I did. A good number of them are married and have children. No wonder they don’t feel they need treatment.
I feel I am as immersed in neurodiversity advocacy as a person can be, or very close to it, and I have never heard from any autistic person that there is no need for treatment or supports, or at least accommodations, for autistics. None of us believe that we represent all autistics or that we have homogeneous needs. In fact, we are diametrically opposed to the school of thought which would seek to provide the same interventions and the same accommodations for all of us.
And it is true that many of us have no overt disability at all. This does not mean we don’t have disabilities or extreme obstacles which aren’t overt. We just choose to not see ourselves as innately diseased or defective. If someone does want to be cured, that is perhaps a pipe dream as tangible as wishing to grow three feet in stature. I don’t believe there are neurodiversity advocates out there who would fault someone for wanting to be different from who they are.
If Mitchell believes he would be happier if he were cured, I feel for him in that regard. He is focusing on something that will never happen, which is something both of us know. That is not a rewarding outlook.
They don’t seem to think they need common courtesy either. In their crusade against treatments and discrimination, these individuals are frequently less than cordial to those who disagree with them. They often equate their opponents to Nazis. Parents of autistic children who search for a cure are accused of not loving their kids. The movement argues that autistics, such as myself, who desire a cure were taught to be self-haters by their parents and society. They protest at fundraising walks conducted by Autism Speaks, (a charity they loathe) and regularly harass its supporters. They have compared Autism Speaks to the Ku Klux Klan.
Yes, we loathe Autism Speaks with good reason. Here’s a PSA they ran:
I am autism.
-Autism Speaks “I am autism” PSA, 2009
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.
I know where you live.
And guess what? I live there too.
I hover around all of you.
I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined
And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.
I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be.
I am autism. You ignored me. That was a mistake.
And to autism I say:
I am a father, a mother, a grandparent, a brother, a sister.
We will spend every waking hour trying to weaken you.
We don’t need sleep because we will not rest until you do.
Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.
I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the Eurpoean Union. We are the United Nations.
We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated.
We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children.
Our capacity to love is greater than your capacity to overwhelm.
Autism is naïve. You are alone. We are a community of warriors. We have a voice.
You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness.
You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?
You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.
Autism, if you are not scared, you should be.
When you came for my child, you forgot: you came for me.
Autism, are you listening?
Yes, this qualifies them to be compared to hate groups. There is no other innate trait in the world that can be painted with such pernicious propaganda without vehement opposition. I’m a mother, and you can be damn sure that I will not be courteous to anyone who speaks about my child with this kind of rhetoric. I have lots of things to say about Autism Speaks and others who want to portray autism in this light, and none of them are polite. No apologies. I’m grateful for others who realize how colossally messed up it is to refer to human beings this way.
Less than ten years ago, the neurodiversity movement was considered to be nothing more than a cult whose ideas were on the absolute fringes. This has changed. In a relatively short time, they have made tremendous strides. In the United States a law was passed by Congress to help autistic people and their families. It was called the Combating Autism Act. Neuro-diversity proponents were outraged at the notion of being ‘combated’, so they took to Twitter en masse, and started the hashtag #Don’tCombatMe. Many of them wrote to their Congresspersons and Senators. As a result, the US government changed the name of the law to the less offensive Autism CARES (Autism Collaboration, Accountability, Resources, Education and Support) Act. The US government also created a body called the IACC (Interagency Autism Coordinating Committee), which now advises the federal government on autism policy. It includes members of the general public with an interest in autism. The law requires that two autistic individuals serve on this body, and to date, seven pro-neurodiversity, anti-cure autistics have been appointed. Zero anti-neurodiversity pro-cure autistics have been chosen to serve on this board, although two were nominated but turned down.
HOT DAMN! YES! I love my tribe. Look at all they’ve accomplished.
Perhaps the neurodiversity movement’s watershed moment came about three years ago when journalist Steve Silberman published Neurotribes, a book about the history of autism written from a neurodiversity perspective. Shortly before publication, Silberman wrote a scathing op-ed piece for the Los Angeles Times criticising Autism Speaks for doing research on genetics and a cure for autism, rather than a vague thing he called ‘quality of life research’. He also cited the long-standing complaint the neurodiversity movement has lodged against the organisation that they have no actual autistic persons on their board of directors.
Shortly afterwards, Autism Speaks, which had never before responded to neurodiversity proponents, published a response on its website, citing all the good work it has done. Next, it changed its mission statement, no longer using the words ‘cure’ or ‘prevent’. It appointed two autistic individuals to its board of directors who oppose a cure for autism. Despite being autistic, both of these new directors have been able to write books, get married and obtain doctoral degrees.
And this is why we love Steve Silberman. He’s an honorary member of the Tribe. Our greatest ally, in my opinion. But Autism Speaks has not improved in practice, only on paper. We still demand better.
The obvious problem with the increasing dominance of the neurodiversity movement is that those more severely impacted by autism are often not in a position to lobby. The parents of severely autistic children may long for a cure but they don’t have the time to crusade. Caring for a handicapped individual is profoundly time-consuming.
It concerns me greatly that the neuro-diversity movement now wields such influence. I worry that it will prevent the scientific research that might help me and others more severely afflicted. I hope there will be a backlash against this movement and that people will see sense before it is too late.
The thing is, historically and currently, disabled people have not been treated like autonomous human beings. There is a tremendous need for the neurodiversity movement, for people like Mitchell and for people like me and for those with struggles more exigent than ours. We understand being dehumanized, misunderstood, infantalized, isolated, mistreated, and mismanaged. We might not have struggles as pronounced as some others, but collectively, we give voice to and support neurodiverse people and all of their marginalized intersectional identities through all of their hardships.
And no, we do not expect people like Mitchell to conform to any school of thought; however, when he and his band of maybe-autistics and neurotypical torch-bearers descend on our advocacy efforts with troll posts, reducing autism to “smearing shit on walls” (their most frequently-quoted canard in a list of unflattering platitudes), then they will continue to be at the receiving end of our opposition.
The days of apologizing for existing are over. This is not a movement anymore. It’s a revolution.
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9 Responses
Compelling post. Thank you! So many good points. I’m sorry you’ve come into contact with people who seem determined to make life even more difficult for a population that already struggles to live in a world that does not yet understand or accommodate their differences. Neurodiversity is such a positive perspective. Why exacerbate the depression surrounding how autism makes life difficult and focus on getting “rid” of it in the future when there are people here and now who need support and love and understanding to live a full life? If I had been diagnosed as a child and surrounded by parents focused on “fixing” me my entire life, I would probably have been clinically depressed from a young age, perhaps giving up on myself and internalizing the view that I am just a freak of nature that doesn’t deserve to be here. How tragic. How is it a bad thing to try actually listening and accommodating rather than condemning and trying to coerce or bribe behavioral changes just to make the neurotypicals around them more comfortable in public? Even those who don’t communicate “normally” or are nonverbal have so much to say if we can stop for a second and listen.
ND a positive perpspective? Anything Panglossian and Panglossian is, by definition, ‘positive’ enough, for sure. Stockholm Syndrome generally is. The point, however, is what is objectively true; not what feels good to so many of the pale liberal intellectuals from the big metropolises (such as the ‘scholars’ or rather ‘intellectuals’) of the ND religion.
Go back to Fox News.
I would like to know why people are encouraged to seek a diagnosis if autism is simply a naturally occurring brain difference & if there is no need for autism to be in the DSM-V? Is neurotypical a trendy word for quirky?
Hi Strawman!
Most Autistic neurodiversity advocates would still call Autism a disability in the sense of Autistic people needing services that society generally is reluctant to provide and can only be cajoled into if said person has a diagnosis. While we dislike the pathologizing that usually comes with it, getting the support we need usually takes precedence.
I hope that helps you!
I cannot speak for anyone else, Kitty: I can certainly speak for myself. But here is why I sought a diagnosis.
I sought a diagnosis because I spent 50 years trying not to be “different” – and failing. 50 years of wanting to fit in with the neurotypical world around me. (Neurotypical is not a “trendy word for quirky” – it just means “not autistic”. But nobody should ever be defined in terms of what they are not, so the word “neurotypical” was coined.) 50 years of observing the social norms and behaviours that neurotypical people expect and trying to deliver them … but remaining “different” none the less. And 50 years of neurotyipcal people just assuming that i was CHOOSING to be “different” … and telling me that if I didn’t fit in then I had only myself to blame because of the choices I was making.
“You need to be more aware of the effect you have on other people” said one of my bosses, who prided himself of being a “people person”. Whenever somebody complained of the effect I had on them, that was MY problem. And yet, I wasn’t allowed to complain of the effect that other people had on me because … guess what? THAT was my problem, too.
“Make different choices … behave more normally … and then you’ll do just fine” was the constant message.
Well, after half a century of effort, I was tired of this constant refrain. Tired of the fact that the neurotypical world would only accept me if I was just like them, and yet no matter how hard I tried to conform, tried to be like them, tried to do exactly what they were telling me I must do … I couldn’t. I was still different. I was still seen by them to be different. And I was still treated by them as if this difference was down to the choices I was making.
I’d had enough.
And the diagnosis I obtained confirms what I knew all along – that I AM different from the neurotypical paradigm, and that this is NOT my fault. It is NOT down to the choices I make. And it is NOT something I can change, no matter how hard I try.
In short, it validates me as a person. As an individual As a human being.
After half a century of being invalidated by the neorptypical majority, that really matters to me.
To someone who is considering “curing” thier neurodiverisity, I say:”Let THEM do that and you will be just like everyone else!”
“Those most severely impacted by autism” … ?
What on earth is meant by THAT???
I am autistic. An aspie. I am intelligent and articulate. I had a career as a lawyer, and now I am entering upon a second career as a teacher.
From a neurotypical point of view, I may appear successful. They may think that I am not “severely impacted by autism”.
But … guess what?? My life has been a 50-year struggle against judgment, condemnation and derision by neurotypical bullies at school and in the workplace. People who thought I ought to be “just like them”, and noticed that I wasn’t. People who devalued and invalidated my humanity because of those differences.
Not severely impacted? Don’t make me laugh.
People at work didn’t like me because I was “different” … so they complained to my boss, who lectured me on my need to “be more aware of the effect I had on other people” and gave me poor performance appraisals which prevented me from progressing in my career. Yet when other people behaved in a way that made me profoundly uncomfortable … guess what? They didn’t need to “be more aware of the effect they had” on me. Oh no. I needed to learn to accept the differences between me and other people. And to accept that, because THEY were perceived to be “normal”, they were entitled to behave towards me in this way, no matter how hurtful and distressing I found it. Nobody else found it hurtful and distressing, after all … so “obviously” I was the problem, not them.
Don’t compare the apparent success I have had in my life with the apparent lack of success of some others who share my condition and tell me that, therefore, they are “more severely impacted by autism” than me. Rather … compare the limited success I have had despite all my talents and abilities with the success which somebody with my talents and abilities OUGHT to have had were it not for the prejudices of neurotypical society at large. THAT is the measure of the severity of impact of my autism … and, though I say it myself, it is HUGE.
Don’t get me wrong … I feel immensely privileged to have the talents and abilities that I have. I earned a place, on merit, at the world’s finest university, after all. But thirty years on … after thirty years of being branded an inadequate failure because, despite those talents and abilities, and the finest university education in the world, I am unable to “get on in the world” due to the way the world perceives and judges me … I simply cannot accept that I have not been “severely impacted by autism”.
And THAT, my friends, is why we need the neurodiversity movement.