Publish: 03 Nov 2019, 08:35 pm
Greta Thunberg, Chris Packham, Jack Monroe and others credit their Asperger’s with giving them the focus to get things done. Here, poet, writer and ‘autist’ Joanne Limburg wonders if the condition has helped her, too
When I heard Greta Thunberg say that being different was a superpower, I had to replay her saying it. Several times. I was diagnosed with Asperger’s syndrome at 42 and, seven years on, I’m still far from sure what that means. Are those of us with autistic spectrum conditions disabled or different? Are we, by definition, deficient human beings, or are there compensations that come with our condition? Are there any circumstances in which autism could be considered, not merely an acceptable difference, but a superpower?
Thunberg’s comment some two months ago was her robust response to commentators who had sought to use her Asperger’s to discredit her, claiming she must be a nave puppet and calling her a “weirdo” with a “monotone voice”. She wrote: “I have Asperger’s and that means I’m sometimes a bit different from the norm. And – given the right circumstances – being different is a superpower. #aspiepower.”
As a fellow autist, I find myself stuck in the middle of these two incompatible views: on the one hand, autistic people are disturbed, naïve individuals who are incapable of knowing their own minds or speaking credibly; on the other, autistic people are superhumans with a preternatural ability to see the truth of things and to articulate it without equivocation. The world would be better without us; the world would be lost without us.
Food writer and campaigner Jack Monroe, too, has written that learning to harness her own autistic traits has enabled her to see them “as a kind of superpower”. Novelist Katherine May is more ambiguous: “My autism brings some things I really value – the flood of words I experience, the ability to fixate on a subject and burrow deep into it, and an intense relationship with the natural world. But there are other bits I’d get rid of. I break things and hurt myself all the time; and I hate the way that I don’t remember faces and so come across as rude.”
Charlotte Moore, who has written about bringing up two autistic sons with high support needs, told me: “I don’t see my sons’ autism as a disability, exactly. In the right environment, they can (and mainly do) lead happy, healthy lives. So I prefer the word ‘difference’ to ‘disability’.” She continued: “Can autism be a superpower? Probably, yes, in a few cases – some autistic people do have extreme abilities – but the popular belief that all autistic people are really geniuses isn’t helpful to parents or carers struggling with autistic people with no speech and self-harming behaviours, meltdowns or sensory overload.”
When I received my own diagnosis, I wanted to find out what it meant. I learned that Asperger’s syndrome is a controversial condition, sometimes set apart from other forms of autism. Since 2013 it has no longer been recognised as a stand-alone diagnosis in the United States, now falling under the umbrella term autism spectrum disorder (ASD), but it still is in the UK.
The opposing views of autism – disability or difference – may owe their origins to two different models of autism outlined by two different psychiatrists. On the one hand, there is Leo Kanner’s autism, first described in the US in the late 1940s. It is characterised by repetitive movement, little or no speech and high support needs. On the other hand, there is Asperger’s syndrome, named after Hans Asperger, the child psychologist and eugenicist who published the first definition of the condition in 1944, describing the children he encountered in his clinic in wartime Vienna as “little professors”. He famously said: “It seems that for success in science and art, a dash of autism is essential.”
For a long time, it was the Kanner view that prevailed. Autism was considered a severe disability – and a rare one. Then, in 1976, the British psychiatrist Lorna Wing coined the term Asperger’s syndrome and a new group of patients – mostly children, overwhelmingly male – began to receive this diagnosis. Autism is no longer considered rare. According to the National Autistic Society, just over 1% of the population is autistic. Other estimates are higher.
Although Asperger’s syndrome is no longer recognised in the United States, there are people who have grown up with it as their identity and they are sticking with it. Others have abandoned it in favour of the broader ASD. Controversy over Hans Asperger’s possible involvement in the Nazis’ eugenics programme led some to drop the term. Many, like me, use autism and Asperger’s interchangeably. I usually define myself as “autistic”, because I don’t recognise any essential difference between myself and non-speaking autistic people.
I tried to figure out what autism might explain in my own life, including some of its negative aspects. I’d had long experience of depression, anxiety and OCD. Had they arisen directly from a glitchy abnormal brain? Had they come about as a response to the adverse life experiences that accompany any difference, or might hypothetical non-autistic me have had them, too? And what about the more positive aspects? Would non-autistic me ever have had the focus or determination to persevere in the financially insecure, isolating, all-consuming business of writing?
I have always loved words and books. At the age of three, I would take my whole library to bed with me. My mother described me as a “not very childish” child, who preferred to talk to adults rather than other children. When I was nine, a teacher read a poem I’d written to the class, and I decided then and there to be a writer. That was a rare happy moment at primary school. Like many parents of autistic children, my parents found themselves with a child that mainstream education refused to accommodate. Their solution (not one open to everybody) was to re-mortgage the house and send me to private school. For my parents, my autism, literally, came at a great cost.
If I picture myself at Thunberg’s age, I see certain similarities. I was idealistic, passionate about what I believed, blunt in the expression of my ideas. I was uninterested in makeup or any other aspect of what my mother called “making the best of myself”. I was a vegetarian, because two years earlier Morrissey had said that meat was murder. I didn’t go in much for what people think of as normal teenage socialising. Instead, I pursued my own interests – and I pursued them single-mindedly.
My passions were writing, the Beatles and feminism. I read my way through the Women’s Studies section of Edgware Library, and passed The Female Eunuch round the sixth form at my all-girls’ school, to raise the consciousness of the sisterhood. I announced to my mother that I was not going to go to university, because to do so would only mean following a patriarchal curriculum. Mum told me to stop being so silly. I went to university, but I took Greer and De Beauvoir with me.
So that was how I was 33 years ago: intellectually curious, idealistic and articulate. I could even be funny sometimes, but I was also intense and sullen, with few social graces. Asperger’s wasn’t available to me as a diagnosis in the 1980s, but people found other words for me. They said “moody” and “difficult’ or “thinks too much”. I still find it painfully difficult to maintain a conversation with more than one or two people at once. I have to overcome a wagon-load of inertia in order to clean my teeth, wash and dress. On a bad day, it seems to me that everything I have managed to do as an adult – earn money, find a partner, raise a child – has only been possible because I have learned to suppress my autism.
But that’s not to say I see no advantages. Like Greta Thunberg and the comedian Hannah Gadsby, I find public speaking easier than casual conversation. In her brilliant Ted talk, Gadsby asks how she can be so good at something – talking – she knows she is so bad at. The answer is that standup has none of the pitfalls conversation brings for autistic people. When she is on stage, Gadsby does not have to listen as well as speak, she does not have to figure out how to respond to what she hears, she does not have to do all the exhausting parallel processing that an autistic person has to consciously engage in during everyday conversation. She has figured out what she wants to say and she can just say it, without distraction or interruption. Perfect.
And I can add from personal experience, that when you have to perform almost every time you interact, performing in front of 1,000 people isn’t very different to performing in front of three. To a non-autistic person, who finds conversation easy but public speaking unnerving, this may well look like a superpower.
Another trait that we have on our side is the intensity of focus with which we pursue our passions. Chris Packham, naturalist and environmentalist and ambassador for the National Autistic Society, explained how the strength of his sensory response to the world around him enables him to “engage with the natural world with greater clarity and ease”. Packham said that from an early age, he could “see things which others couldn’t in nature”.
There is a third trait associated with Asperger’s syndrome that Packham shares with Thunberg and which makes them both such effective activists. It is a certain moral single-mindedness, sometimes pathologised as “rigidity of thought”, but at other times framed more positively as “a strong sense of justice”. Thunberg has spoken of her ability to see things “in black and white” – for her, this is not rigidity, but clarity. Autistic people, in general, feel the pull of the truth more powerfully than we do the pull of fitting in. We are not inclined to accept reassurance that has no facts behind it.
Sometimes I do pretend to accept it. I’ve changed since I was a teenager: softened, become more pragmatic. It makes me easier to get on with, but when I watch Thunberg, I wonder what I might have done if I hadn’t spent so much energy learning how to smile when I talked.
I asked Steve Silberman, author of NeuroTribes: the Legacy of Autism and the Future of Neurodiversity, whether he agreed with Thunberg. “Autism,” he said, “is a disability that can have advantages in the right situation, and with the right support. Greta’s intense focus and disregard for others’ opinions of her are ‘superpowers’ in that they help her ignore the fossil-fuel industry’s lies, take on the facts of climate change, and organise her peers to change the world.”
Perhaps we can change the world, if we don’t let it change us too much. Packham has suggested that: “Humanity has prospered because of people with autistic traits. Without them, we wouldn’t have put a man on the Moon or be running software programmes. If we wiped out all the autistic people on the planet, I don’t know how much longer the human race would last.”
At the same time, there are some autistic people who see no advantage in it, and would gladly take a cure. There are some parents so desperate to believe in a cure that they put their faith in bogus treatments, sometimes with terrible consequences.
So, what do I have – a disability or a difference? I asked developmental psychologist Professor Uta Frith the question: “Both points of view are valid and should be respected,” she told me. “We might avoid confusion by dividing the spectrum into subgroups, but where the boundaries would be is far from clear. We need more research to tell us what autism really is.”
There’s no telling where the boundaries are between a person’s autism and the autistic person. As far as I can tell, everything I am, I am autistically. If you took the autism away you would take me with it. And, regardless of whether autistic people have superpowers or not, when the world gives us the support we need, we thrive, and give the best of ourselves in return. You’ve not seen the best of us yet.
Source: The Guardian