I once spoke to the horror author Murial Gray, author of the criminally-overlooked masterpiece Furnace, about an unpublished writer accusing her of plagiarism. She was actually quite flattered, and said, ‘That’s how you know you’ve made it as an author.’
I carried that little nugget with me all my life, but I no longer agree with it. My new philosophy is this:
‘You know you’ve made it as an author when you’re accused of an -ism.’
Among the many five-star reviews of my book An Adult With An Autism Diagnosis: A Guide For The Newly Diagnosed (yes, I am blowing my own trumpet), there’s one that describes my view of the Autism Spectrum as ‘ableist’. Since ableism is discrimination and social prejudice against people with disabilities, and since I am a person with autism and thus disabled, I’m not entirely sure how I can discriminate against myself. If I were prejudiced, and held the belief that disabled people are inferior to non-disabled people, I can’t imagine why I’d have married an autistic person, or why I fight for the rights of people with autism – hell, even why I’d ever stick up for myself. At face value, this accusation is clearly utter nonsense from someone who uses neo-liberal shibboleths without engaging critical thought.
However, as someone who wrote the book to help people who, like me, were diagnosed with autism later in life, I’m conscientious about making sure it does the job it’s meant to, so rather than dismissing criticism out of hand, I try to see if there’s anything I can learn from it. As evidence of my ableist approach, I’m accused of depicting autism as a straight line from ‘not very autistic’ to ‘very autistic’. This may well be a fair point, but it’s certainly worth addressing.
There are many different models of representing the Autism Spectrum. I had considered creating a diagram of a very common one that maintains the Autism Spectrum is like a 100-piece jigsaw, with each piece an autistic trait. Everybody on the planet, so the theory goes, has several pieces; once you have around 60, you’re diagnosed with Asperger’s or High-Functioning Autism; once you have around 80, you’re diagnosed with Classic or Kanner’s Autism; nobody has all 100. Thus two Aspergic people with 60 pieces might only have twenty pieces in common; their autism, or how it manifests, might therefore be markedly different, and would certainly be different from someone with 90 pieces who has Classic Autism.
The reason I rejected the jigsaw puzzle model is that I disagree with it, because the difference between autistic and neurotypical people is one of kind, not amount. You can’t count up behavioural traits and then draw a line with ‘autistic’ on one side and ‘neurotypical’ on the other. That would certainly be ‘ableist’, and by implying that everyone is on the Autism Spectrum, it devalues the reality that we are different.
I chose to depict the Autism Spectrum as a line from high-functioning to low-functioning because that is how it is spoken about, both in professional circles and among the autism community – or, at the very least, the people with autism, their families and support workers that I hang out with. Since DSM-5 merged the different autism diagnoses into the single umbrella term ‘Autism Spectrum Disorder’ and defined it as Level 1 (requiring support), Level 2 (requiring substantial support) and Level 3 (requiring very substantial support), how else are we to create a diagram of the Autism Spectrum than a line of increasing severity/decreasing ability to cope without support? (And to be fair, my line runs horizontally, not vertically, to avoid the idea that Levels 2 and 3 are ‘beneath’ Level 1).
Ableism is also levelled at the idea of defining people by their difficulties, but I think there is an important nuance here between ‘describing’, which is neutral, and ‘defining’, which carries a value judgement. The comedienne Francesca Martinez has a joke about why people judge her by what she can’t do because of her cerebral palsy, instead of by what she can: ‘Nobody says of [Irish President] Bertie Aherne, “Yeah, great President, but have you seen his golf? It’s shit!”‘ We should not be defined by our disabilities, that is true, but in a book about autism and how to help autistic people find peace in a neurotypical world, what else should I mention but the ways in which we are different from neurotypical people and the difficulties that can result from our interactions with mainstream, everyday neurotypical society?
Having lived with autism all my life, and suffered when I didn’t understand it or how it affected me, I don’t think it’s helpful to be unrealistic. It is a neurotypical world out there, not an autistic one, so it’s not belittling people to say that those of us with autism start out with a disadvantage that we need particular tools, techniques and skills to overcome. Nobody expects a wheelchair user to climb stairs, or a blind person to navigate a sighted world without a stick (although some do), so why should it be any different for a person with autism?
Don’t get me wrong, there’s a whole bunch of people out there who think autistic people should be wrapped in cotton wool and sheltered from the world, and I agree that that’s bad, because if you stop people from experiencing the negative things that can happen in life, you also deny them from experiencing the good; but equally bad are those who insist that something like autism is no impediment to anything, and you can do anything you want in life. No, you can’t. There will always be limits to what a person can achieve, and pretending there aren’t is disingenuous. That’s not to say a person with autism isn’t valuable for who they are, or that they can’t be incredibly successful in their chosen field – look at Susan Boyle, Guy Martin, Sir Anthony Hopkins and Greta Thunberg, for example – but finding out what you can do in light of your limitations is not demeaning a disabled person, it’s simply channelling their potential in the direction that maximises their chances of reward and minimises the risk of failure. I think that’s pretty good advice for anyone, autistic or otherwise.
To accuse me of ableism is also to overlook pretty much everything I say in the book about how people with autism are different, not worse, than neurotypical people, and should not be judged by what they can and can’t do. In particular, I use a model I made up called the Mini and the Tractor. When those of us with autism are born, we’re given a Mini, while neurotypical people are given tractors. On the roads – those things we can do – we speed along quite happily, and are often able to overtake people in tractors. But either side of these roads are ploughed fields – the things we can’t do. While neurotypical people drive through them at the same speed, people with autism struggle, and bog down and get stuck, and often need a person with a tractor to come along and pull their Mini through the field and put them back on the road. We aren’t worse than neurotypical people – far from it – we simply have different wheels suited to a different surface.
How someone could have read that and inferred from it that I think people with autism are inferior to neurotypical people, or that people with ASD Level 3 are less valuable than people with ASD Level 1, is surely finding things to confirm your preconceptions – that I’m ‘ableist’. Indeed, the critic has read into my text a value judgement – better and worse – that I don’t think the material suggests.
So where has the accusation come from?
I don’t know the reviewer, of course. I’m sure they genuinely think my views are ableist, but I’m not sure they have the same interpretation of what it means as I do. What I suspect is that, like much of modern discourse, they’re coming at it from the viewpoint of intersectionality – that society is structured as a matrix of domination, with privileged groups oppressing others who need to fight back. At its most simplistic, this means dividing the world into powerful oppressors and powerless victims, and I think people are always on the lookout for examples where they can fight on the behalf of the oppressed by using words that end in ‘-ist’ and ‘phobe’ – like, say, when an author says something that appears to objectify disabled people. The disparity of our perceived power relations – me as an author, the privileged oppressor, imposing my view on the powerless reader, the oppressed – might be what triggered the accusation of ableism.
But here is my objection to that whole ideology: I am autistic. I am the very group I am oppressing. I am able to speak about autism because I am autistic, so it is my status as an (apparently) oppressed person that enabled me to become an author and thus have the power to oppress myself with ableism! Given that the average non-fiction book sells a mere 2,000 copies in its lifetime, netting its author around £1250 spread across a number of years, I think that might be overestimating my power in any case.
I guess, really, the ultimate test is to ask someone from the oppressed group how they feel, since apparently the best judge of whether oppression exists is the person feeling oppressed, rather than any external measurement or evidence, even if others in that group have a different opinion.
So, Gillan, as an autistic person and thus a member of an oppressed group, do you feel the idea of an Autism Spectrum that runs from ASD Level 1 (high-functioning) to ASD Level 3 (low-functioning) is ableist and discriminates against you as an autistic person?
Well, that settles that then.
Still, if someone thinks the best way of defending the right of disabled people to define the terms of their disability is by criticising a disabled person for defining the terms of his disability, who am I to argue with such logic?
(Oh, and if you want to work out your intersectionality score, and thus your level of victimhood compared to others, just use this handy Intersectionality Calculator).
One thought on “I’ve been accused of ableism!”
Hey Gillan, I’ve not read your book or the negative review you bemoan so I’m coming at this with zero judgement. I think it is possible that you may have misunderstood the point the reviewer was trying to make. I am a young autistic adult who was diagnosed when I was in school about twenty years ago. I’ve been using the internet pretty intensely during that time and spent much of it in autism communities, so I’ve encountered a lot of these sorts of situations.
It sounds like the accusation of ableism was not meant to suggest that you hate autistic people, but that the common and widespread conception of the autism spectrum as a line is inaccurate and harmful, particularly to people who get classed as “low functioning” (to use your term, which again is widespread). These people might need more support doing day-to-day activities, but sometimes the “low functioning” label is used to remove their agency, leading to unnecessary institutionalisation, medical procedures, and harmful therapies.
I do not know whether you consider yourself “high functioning” or “low functioning”, but I believe the reviewer has perceived you as “high functioning” and perceived that you were being ableist against “low functioning” people. This is unfortunately quite common in the autistic community.
From your comments, it is clear that this wasn’t what you intended. I cannot say if this is a fair reading of your work, or if your interpretation of the review was a fair one (it seems to me that you probably both misunderstood each other). But I don’t think the accusation is that you hate autistic people, rather that something you said may be disadvantageous to a subset which the review perceives that you do not belong to. Regardless of whether that position is fair and accurate, I hope you can agree that it is at least coherent.
You seem like a thoughtful and considerate person and I’m sure you’re learning more about being autistic all time. This is a very deep topic that I’m not sure it would be beneficial for me to go into detail about right now, but if you’re interested then there is a lot of cogent writing on the subject.