Autistic people hate Autism Awareness Week and everything it means for us

Kerry-anne Mendoza

This is my first Autism Awareness Week since I discovered I’m autistic. And it’s thanks to this initiative and the dodgy organisations behind it that my diagnosis came so late. For too long, the public discussion of autism has been dominated by non-autistic people. Frantic parents seeking a ‘cure’, and eugenicist organisations willing to monetise their panic. Meanwhile, the authentic voices and wishes of autistic people have been ignored and overlooked. We don’t need awareness, we need acceptance.

Gayness Awareness Week

As a gay person, Gay Pride resonates with me. But if it was called Gayness Awareness Week, run by straight people, and focussed on conversion therapy, it wouldn’t. So why on earth would any thinking person endorse Autism Awareness Week? Because it’s the moral equivalent. Autistic people brace themselves for it, and counsel each other through it.

Autism Speaks is a US-based organisation that has all but taken over the conversation about autism. It was founded in 2005, and since then has – in the majority opinion of autistic people – done us great damage. Its 2009 video ‘I am Autism‘ just about sums up its approach. Sinister music plays while autism is described as a monster that sneaks into your house and murders your family.

I am autism.
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.

And worse

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.

The ‘awareness’ groups like Autism Speaks seek, is a common understanding of autism as a malevolent plague. They want to end it, in the same way anti-LGBTQI+ groups seek to end homosexuality. They see us as non-people, our humanity stripped from us by some evil disease. Only they can rescue us. With your help, and your money.

Being autistic

I am not a person with gayness. I’m a gay person. I am not a person with autism. I’m an autistic person. Being gay isn’t a problem, the problem is homophobia. Being autistic isn’t problematic. But being told my basic needs were negative character traits was deeply damaging.

Everything traumatic about being autistic stems from being forced to suppress our needs for the sake of other people’s comfort. We are told to reduce or abandon self-care techniques because they look weird to non-autistic people. Our classrooms, factories and offices are built for non-autistic people. We are made wrong, simply for existing. And for most of us, this starts at home.

Before I knew I was autistic, I lived in the non-autistic conversation about it. That conversation is entirely centred on non-autistic parents being robbed of their healthy, normal child. It would be summed up as:

They were happy and normal until one day, they just stopped speaking

Without wishing to minimise the trauma of feeling unable to meet your child’s needs, you’re the parents here. The universe didn’t promise you a neurotypical child, or a straight child, or an able-bodied child. When you choose to bring a child into the world, you take on the duty of parenting whoever is born. But too many parents seem to feel a neurotypical, cis, straight child is theirs by right. To them, anything else is some sort of disaster. And as children, we see it and we hear it. We learn that we failed our parents simply by existing.

Autism Awareness Week is dominated by these parents and organisations that profit from their fear. They fill them with hope of a cure, and nurture rather than challenge their prejudice.

There, there. We know. You deserved better than this. 

Be the change

I am immensely grateful that I’m autistic. Being part of a tribe that has contributed so much to human history is a source of pride, not shame. Without autistic people, humans might still be living in caves. Whether it’s art, science, technology or any other field of creative intelligence, autistic people loom large within it. We’re curious outsiders who bring a beginner’s mind to everything. We see what’s possible because we’re not tied to what is. So don’t give us pity, give us acceptance. Appreciate us for who we are, rather than judge us for what we aren’t.

To be a part of the solution, here are some simple actions non-autistic people can take:

  • Don’t #LightUpBlue for Autism Awareness Week. Go #RedInstead with autistic people. This is our way of taking back control of the conversation
  • Don’t support groups like Autism Speaks, and spread the word about why they don’t speak for us
  • Take your lead on autism from autistic people
  • Respect autistic needs. Make sure our classrooms, workplaces and public spaces are built for neurodivergent people too.

I’m not Queen of the Autistics. I speak only for myself, and am using the platform I have to say some stuff autistic people say to each other all the time. So here’s a request to non-autistic people: normalise assuming you have neurodivergent people in your life. We are everywhere. I masked for decades before being able to accept I was autistic. I had to completely break before I was willing to give myself what I needed. Acceptance is everything. Give that to the autistic people all around you.

Featured image by author

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  • Show Comments
    1. I was tentatively diagnosed with EUPD, just at a point where I was coming to learn or accept things about both myself and the current nature of society which have begun to help stabilise my neurology. I’ve been someone prone to being exploited by narcissists including people recogniseable enough from and made predictable enough by engagement with the literature on Narcissistic Personality Disorder. Ours has been a fundamentally narcissistic culture for decades – Conservatism is fairly thought of as institutionalised narcissism, and Priti Patel and Michael Gove are pretty glaring examples of individual disorder within their institution. We can’t afford to mince words when very obviously damaged people, who’ve found an ideology that accommodates and naturalises their broken selves, go on to do societal damage. I chose to be as harsh towards myself when necessary in the face of potential vice and not to consider my neurology just-so.

      I’ve been acquainted mostly with people of one kind of neurological difference or another, and whether people are happy with for example being called schizophrenic, or with being said to “have symptoms or qualities we might associate with a term like schizophrenia” seems to vary greatly, partly in relation to level of education and quality of community. A woman I knew had her mental health treatment forced on her having got herself a conviction for GBH, through having lived for years in fear begining with child abuse. She doesn’t take well to the mental health language, but it’s a great shame – she is stuck in a loop of behaviours that dmaage her and keep her vulnerable because a discourse has reached her aggressively which if she had pursued it freely could have been liberating.

      To me it’s a mistake to treat language as if it has fixed objective sets of implications, and it’s clear enough that terms evolve or at least change, and that there is a neurotic component to this, albeit an understandable one. For example the growing use of the term Black with a capital B, which even some Guardian writers have begun to use. Once ‘coloured’ was seen as progressive, and then ‘black’ with a small ‘b’ held that to be unsatisfactory. Similarly the pronouns within the discourse on non-binary and trans identities, presented as if the last word. We haven’t before had this tendency of fast-tracking a discourse to orthodoxy, and I don’t think it’s the liberation it’s presented to be.

      I was at university when there was a certain bias toward postmodernism and poststructuralism, which while I was studying aggravated me as a working class person scarcely able to escape ways of seeing heavily dictated by poverty and limits to experience brought about by an oppressive upbringing. Yet my choice of degree in time made me a less obsessive, less dogmatic person, without making me frivolous or conservative. I’m grateful that something that felt malign, even for several years before beginning university as a mature student, turned out to be positive, that I was forced to question myself and separate empowering ideas from oppressive ones that had looked like inescapable aspects of myself. These days I see signs that this has been lost and that people are being led to think that what they say they are is what they are, that they don’t need to question themselves or doubt themselves – to see themselves as a work in progress – even when very young. People are allowed to dig their heels in, in their teens and twenties, shutting out thought and experience. The aspects of myself that had made me seem to fit within the diagnosis of EUPD were really about a flux rather than fixed qualities. If navigated freely, depression and anxiety and other qualities of disordered mental health and neurology are what is experienced when pursuing true freedom, extracting oneself from the collective psychosis.

      My concern is that there is a grey area where, though the term has baggage and I’m not prone to using it, ‘identity politics’ can estrange people and groups of people through the adoption of ideas that obscure this flux of development. There is a shared and not yet known nature we possess as a species even with our differences, and the discourse and science of autism has provided vivid revelations regarding this – how much of life is, for anyone, just masking and the modeling of behaviours, how unnatural much behaviour is. We’re facing so much of a reactionary and neurotic wielding of power, from the narcissists, that we see enmity everywhere, even in people journeying to their freedom just as we are. There are clumsy and oppressive discourses, because these become appropriated by differently fallible people with power. How much of selfhood is taken from these discourses and how healthy or unhealthy that is is not black and white or so surely known.

    2. An associated catastrophe is refusal by doctors to recognise autism by instead asserting that behaviour is due to mental health issues. This results in damaging use of psychotropic drugs. Our family member is consequently trapped on a regime of medication that has hugely damaged a previously exceptional mind, caused gross weight gain and other physical health issues, whereas previously they had excellent fitness

    3. I think there are real problems with an analysis that compares being gay to being autistic. Being gay is not a disability or psychological condition, though of course it used to be seen as that.

      Autism is a disability. It covers a wide spectrum from high functioning to those who are severely constricted in their ability to live a normal life.

      My son is the latter. He is unable to fend by himself and needs his parents to look after him. He was sectioned under the Mental Health Act for 17 months when he started attacking and kicking cars, throwing stones through people’s windows, attacking people and then his parents. I was injured trying to restrain and calm him down.

      Although we hated him being incarcerated as did he there was no alternative. We were able to use that time to find a combination of drugs which enabled him to come out and lead the previous life he had led without him attacking anyone.

      He now has carers who take him out and parents who love him and he has his own room and can do what he wants. He is dare I say it happy. But he is disabled. He can’t cook by himself, he can’t read and write, he can’t even cross the road safely. That is just how Daniel is. We love him as he is and have no desire to have him ‘cured’ and do not believe there is a cure. Those who suggest otherwise are talking of a coercive behaviour modification much like gay conversion therapy.

      So basically autistic people will live different lives to those of ‘normal’ people. How different will depend on how severe their autism is. It may be possible for gene therapy in the future to eliminate autism. I don’t know. It may be that the poisons we put into the atmosphere is responsible for the increase in autism. however we should not glamorise the condition either.

    4. Excellent piece. I was diagnosed as autistic in 2006, at the age of 31. I am currently branch secretary of NAS West Norfolk as well, which means I cannot completely reject the ‘Autism Awareness’ narrative, but I do point out that autism awareness is at best laughably inadequate, and at worst as instantiated by the American “charity” you referred to, downright dangerous. Autism acceptance is the minimum requirement, and autism appreciation/ autistic pride is better still. I have a long standing blog, http://aspi.blog.

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