By Charlotte Disley.
As I am sure many of you have (or are expecting in the future) received a rather long document from a psychologist, finally stating in black and white that either you or a loved-one are on the autism spectrum. I got mine not too long ago.
It was a quiet night and I had originally planned to focus on studying for my exams. When I opened my laptop, I noticed I had received an email containing the report. Being confident in my identity as an autistic person, I thought a quick skim through would be unlikely to phase me), so I eagerly opened the report. I soon began to realise my judgement was wrong. Instead, it left me feeling rather ashamed. My autistic friends on social media reassured me that I was not alone in this feeling this way and they too had felt similarly upon reading their own report.
The report describes how extremely unenjoyable it must be for others to talk to me, from the detailed analysis on how I cannot make eye contact to my peculiar choice of wording. I had always known I was awkward, but this took it to a whole other level. For the first time ever, I felt embarrassed to call myself autistic. This then got me thinking: if I could feel this bad about being autistic, a diagnosis I am very familiar with and have always wanted for myself, then it must be terrifying for parents and carers with a newly diagnosed child to read about their ‘deficits’, so to speak.
In my view, the use of language in these reports comes off far colder than the apparent coldness us autistic people are supposed to show according to the diagnostic criteria. It is no wonder that parents were scared into frantically scouring the internet for any sort of remedy or cure when reports make out that their children will never be able to have a fulfilling life, one full of healthy and sustainable relationships.
Whilst it is reasonable that a diagnosis works to identify a sets of traits (otherwise how can diagnosis happen?), in the case of a autism diagnosis, they tend to focus on any traits that could be seen as negative, such as impaired social skills. The view of autism through this lens is often referred to as the medical model of disability, in which the individual with the disability is seen as the fundamental problem, and not the social world around them. Whilst it is important to acknowledge that some traits of autism can produce support needs regardless of external factors, many autistic people would still never ‘cure their autism’ if given the opportunity (including myself), yet at its most extreme this is what the medical model promotes.
Thankfully, most autistic people prefer to opt to look at their autism through the social model of disability, where autism itself is not the problem (like it is in reports), but rather that social environments which fail to respect and support the needs of autistic individuals, is the problem. For example, many parents whose children have received a diagnosis worry about their child’s ability to make eye-contact to communicate, something I struggle with greatly. However, I do not believe my lack of eye-contact to be an issue with me; I see it as an issue of people not understanding how my autistic-self communicates, as eye-contact is often too intense for autistic people. By this, I mean that our sensory differences make eye contact painful, and we are much more comfortable not engaging in it. This is quite a niche example, sure, but it is a good starting point to start questioning what the issue is: not the autistic person themselves, but how the world perceives and treats them.
So, should these reports switch to the social model lens? I am not qualified enough to make that judgement, but it wouldn’t hurt to give autistic people and parents some reassurance when they get their reports back. There are many wonderful parts to being autistic too; its cliché but our ability to see things differently truly is something I would not give up to be neurotypical. Whilst the report is shocking to read, it is important to take it with a (big) pinch of salt. Autism does mean that you will live your life differently to non-autistic people, but it certainly does not mean it changes it for the worse.