#REDinstead: Autism Acceptance and Why I Will NEVER ‘Light It Up Blue’

CN: Autism $peaks, ableism, discrimination

Late last year I was diagnosed with the strange and grammatically peculiar condition ‘Autism Spectrum Disorder specifically Asperger’s’.  The word ‘disorder’ is an unfortunate one within the context of an autism diagnosis.  As with all autistic people, the way I see and process the world around me is different to neurotypical people – not better, worse, or ‘disordered’, just different.  Some people describe being autistic as living your life through a different lens, though this metaphor in itself isn’t without its problems.  In a perhaps less than surprising cliché, receiving, and indeed being in the process of receiving such a diagnosis has been both a blessing and a curse.  As many report upon receiving the same, it has indeed given a name to my experience of the world which has often seemed somewhat at odds with others around me.  It has also denied me opportunities that others have had given to them.

I have had an autism diagnosis for just six months and already I have been turned down for multiple jobs on that basis.  I should have known not to share this information, and indeed I was warned by autistic friends that acceptance is still so far away, but I guess in my naïveté I hoped that society had moved on from such unsophisticated views of neurodiversity.  This is perhaps the most obvious example of discrimination against the autistic community, which still faces far higher unemployment rates than the general population, but there are many other examples I could give.

The other side of the discrimination coin is the ubiquitous questioning, or even outright denial of your autism.  A friend recently relayed a story to me in which, at the behest of his wife, he went to see his doctor to ask for an autism assessment, only to be told that if he actually had autism they “wouldn’t be having this conversation”.[1]  Apparently you don’t even have to have a diagnosis to be on the receiving end of the most ignorant anti-autistic discrimination, and that from a GP!  But it goes even further: I have even met people who claim that autism doesn’t exist and that its symptoms are simply the brain’s response to adverse external circumstances!  Such is the absurdity of this idea that I’m not even going to bother addressing it, but the questioning and denial of individuals’ autism does warrant discussion as it is so pervasive.

When you tell your friends about your autism diagnosis, naturally they will often share their opinion, solicited or otherwise.  In my experience there are two responses: agreement or scepticism – few give a neutral response.  This is understandable, particularly with those you have known for some time, and it should be noted that these expressions, whichever way they go, normally come with the best of intentions.  The vast majority of people who have done this with me, and there are many, have done so believing they were offering encouragement, and I appreciate that.  Denials, though, often come from a place of misunderstanding of what autism is or a lack of realisation of the sheer effort that goes into appearing ‘normal’.  This means that rather than offering encouragement, denying a person’s autism actually serves to invalidate their experience.  It says: “I don’t believe you when you say you experience the world in the way you claim and I don’t believe you when you say you’ve put in great effort to adapt to the society around you.”  I don’t doubt that this is not the intention, but it is certainly the implication.

Screenshot 2019-03-27 at 15.11.20As with many subjects, where one gets one’s information about autism is very important.  As a rule, it is best to start with those who are directly affected by the subject at hand, and autism is no different.  This is part of the reason why so many in the autistic community have been so vocal about their opposition to the US based charity ‘Autism Speaks’, and their campaign to ‘light it up blue’, preferring to light it up #REDinstead.  Autism Speaks was founded by the multi-millionaire Republican businessman and philanthrocapitalist, Bob Wright, and his wife Suzanne, after the birth of their autistic grandchild.  The pitfalls of philanthrocapitalism — the practise of rich business leaders ploughing their substantial wealth into charities and causes as they see fit — are well attested.  In her book No Such Thing as a Free Gift, Linsey McGoey traces the history of philanthrocapitalists and their influence over public policy:

‘[…] philanthropy is used to thwart demands for higher taxation, protecting and expanding assets rather than redistributing wealth. Philanthropy often opens up markets for US or European-based multinationals which partner with organizations such as the Gates Foundation in order to reach new consumers. Giving more is an avenue for getting more, helping to concentrate wealth in an ever-narrowing nucleus of power-brokers with growing influence over policy-setting at organizations such as the WHO or the UN’s Food and Agriculture Organization (FAO).’[2]

NoSuchThingAsAFreeGiftMcGoey is concentrating on global development issues here, but the principle is the same: that rich businesspeople are better able to paternalistically decide what people need than people are themselves collectively.  In the age of ‘woke’ businesses, it is little surprise that this is seen so universally as a public good rather than a cynical PR exercise, or perhaps if we’re feeling a little more charitable (pun most definitely intended) we might say that one of the most worrying things about philanthrocapitalism is the belief that one is doing so much good whilst actually doing so much irreparable damage.

This same paternalism is found not only in the founders of Autism Speaks, but the vast majority of its leadership too.  Despite its name, Autism Speaks does not represent the voices of autistic people and much of what they have to say is actively opposed by the vast majority of the autistic community.  Take, for example, the advertisement linked in the video below which frames autism as an evil character from a horror film, using lines such as “I am invisible to you until it’s too late” and “I know where you live”, all whilst playing suspenseful music.

It’s difficult to understand how anyone could make an advert that so crassly perpetuates tropes and stereotypes with zero regard for their destructive power, but this betrays the fact that almost all the leadership of Autism Speaks are neurotypical representatives of major corporations and that their track record of listening to the views of the autistic community is terrible, even when they do appoint an autistic person to their board.  Now it is, of course, true that the autistic community is not a monolith so it would be wrong to assume it speaks with one voice on any given issue, but it is also true that I have yet to find anyone in the community who considers Autism Speaks with anything other than utter contempt.  This is understandable.  Autism Speaks spends just 1.6% of its money on actual material help for those with autism, preferring to pour millions of dollars into research for a cure and in utero screening so mothers can decide to terminate their pregnancy if they are carrying an autistic child.  On top of this, Autism Speaks advocates for applied behaviour analysis (ABA) – ‘a behavioural therapy which has the goal of changing observable measurable behaviour’.  This ‘therapy’ has a deeply controversial history and many autistic self-advocates consider its use with autistics a form of torture.  Autism acceptance, it is fair to say, could not be further from Autism Speaks’ agenda, no matter what they may claim.  Needless to say, all of these things have been vehemently opposed by an almost unanimous majority of the autistic community.  Many of us have spent years attempting to undo the internalised ableism imposed on us by a hostile society, and many more of us do not see our autism as something to be cured, but rather something of which to be proud and even celebrate.

This is why #REDinstead matters.  Whilst being autistic can present challenges, few of these actually stem from my autism itself, but from a society that is not geared towards neurodiversity.  Rather, being autistic actually gives me a way of seeing the world, of living life that I have now come to accept as beautiful.  Red is the colour of beauty, at least in the human psyche.  It’s also the colour of passion, determination, power, strength and communism.  It may have taken thirty years and a late autism diagnosis to get me to the place where I identify with these things, but I’m here now, and no, Autism Speaks, you do not speak for me or my autism.  My autism and I are one and I speak for myself.  I will never participate in your hate campaign to ‘light it up blue’.  I will light it up #REDinstead.   I would ask my friends and comrades to do likewise.

Recommended reading:

The Caffeinated Autistic
Autistic Self Advocacy Network (ASAN)
Autistic Mama
Autistic UK
Autistic Women & Nonbinary Network (AWN)

[1] When this friend finally got the referral they were looking for, they found that there was a three year wait or they could go private for £3000.  This is part of the reason you will always see me believe and respect those who self-diagnose.  The system is not fit for purpose.
[2] Linsey McGoey, No Such Thing as a Free Gift: The Gates Foundation and the Price of Philanthropy, (London: Verso Books, PDF e-book, 2015), location 332-333.

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