Unsurprisingly, this issue is especially hotly contested amongst autistic people, their families and autism professionals and researchers. Assuming that difference and disability are irreconcilable ways of regarding autism strikes me as a false dichotomy, rather like the nature/nurture debate, in the last century. That seems to have been resolved by the realisation that nature and nurture interact in complex ways to form an individual character. I would contend that the same is true for difference and disability in relation to autism.
One reason why autism is so contested is that it is so difficult to define. We know that most autistic adults are undiagnosed and diagnosis is made subjectively by behaviour rather than by indisputable biological features. The invisibility and variability of autism allow extreme stereotypes and dubious statistics to flourish. Indeed it can be difficult to be sure what we are talking about when we discuss autism. However the existence of autism as a unique condition, despite its varied expressions, has been recognised at an official level with the passing of the 2009 Autism Act which also recognises that appropriate support and accommodation can help autistic people succeed.
To enable the accommodations to be made for it, autism has to be recognised, and there’s the rub – autism is a highly stigmatised condition that presents challenges, so people would rather not have it. Also many people working in health, social services or education have had minimal or no autism training and so are unable to identify autism. Even if they can, they are often reluctant to label their patients or students with a condition frequently seen as entirely negative. Parents can resist the idea that their children are autistic and adults seeking help can be shocked to hear the suggestion that they have a lifelong neurological difference rather than a temporary difficulty.
It is frequently stated that only 15% of adult autistics are in full time employment; I think this figure is misleading because many working autistics, often found in high-level and well paid jobs, are undiagnosed. Or they might have been refused a diagnosis by a professional who, like Baron Cohen, would “withhold the diagnosis” If someone with the traits of autism appeared to be managing their life. An article in the Guardian last year began with a photo with the caption “In the UK, 77% of those with autism are still, as adults, relying on their parents for support.” Clearly this sort of (mis) information would be frightening to any parent whose child just received an autism diagnosis.
I believe this fear around identifying or diagnosing autism does real damage by preventing the personal growth and understanding that could be enabled by appropriate diagnosis. As a parent says of her son’s diagnosis in Andrew Solomon’s book “Far from the Tree” “We could make sense of things that had previously been inexplicable to us; we felt validated…..A Cray supercomputer is used for really complex intense computing…It runs so hot it has to be kept in a liquid cooling bath. It requires a very specific kind of TLC. And is the Cray defective because it requires this kind of nurturing environment for its functioning? No! It kicks ass! That’s what my kid is like. He needs support, needs attention, and is amazing”
Some people seem to fear that if we accept that autism is a common condition and that most autistics are fairly ordinary, this would detract from acknowledging that autism is also a serious condition – a major neurological difference that can cause severe difficulties that are not always obvious to observers. I think autism is best viewed as a difference that is also a potential disability. I think we need to recognise and celebrate the diversity within the human race and within autism.
The existence of successful high profile people like Stephen Fry admitting they have bipolar disorder has not subtracted from the recognition the bipolar disorder is a serious condition needing treatment, but it has offered hope and an alternative outlook to those affected by the condition. Importantly it also enables people to “come out” and find community with others in a similar situation. It would be great if more autistic people “came out” although Wikipedia already presents an interesting list of potential autistic roles models.
More awareness of positive role models would help normalise autism and make it easier for people to admit to having the condition. Accepting it as a difference that can be disabling would encourage people to be open to the understanding offered by the diagnosis and help them to get any support they might need to live fulfilling lives and be in a position to contribute fully to society.
We need a culture change about autism similar to what has evolved in relation to homosexuality; whereas before 1967 homosexuality was illegal, and even for decades after that there were no out gay MPs, now there are several and it is illegal to discriminate on the basis of sexuality. This culture change is a virtuous circle we can all contribute to.