My own diagnosis
I did not accept my autism diagnosis for many years and even when I did it was with a fair amount of reluctance. For a long time I saw my autism as something of a shameful secret. I was happier to tell people I had been in jail than that I was autistic! Eventually I came to terms with it – writing my autobiography certainly helped with that and it being published even more so!
After I accepted and embraced my autism, I thought that getting a diagnosis as a child would be far preferable than my experience of waiting until I was 20 and had managed to ruin my life prior to finding out that very important piece of information about myself. To my mind children getting a diagnosis must always be a good thing. The younger the better…or so I thought.
Then I met someone who I will call ‘Adam.’ Adam was autistic and had been diagnosed when he was six. For most of his life he had an autism diagnosis but, far from the amazing opportunities the knowledge of his autism had surely bestowed upon him, he was in fact miserable, dependent and had a very low opinion of himself and his capability. ‘Adam’ had been told what he couldn’t do for his whole life. He had never been exposed to significant challenges with the adults in his life apparently not deeming him capable of dealing with very much. When I told ‘Adam’ that I was autistic and an author and that I worked for the Australian Public Service he told me I was lying and that my life was not possible for an autistic person. At that point I realised that an early diagnosis did not necessarily lead to a better life for autistic people! I started talking about autism and resilience and writing books to empower autistic young people to engage with life and tap into their talents and skills.
Pros to diagnosis
There are a number of pros about having the autism diagnosis. One of them is the chance to access your identity. Being autistic is unlike a lot of other health conditions due to the very clear sense of identity that being autistic provides to so many autistic people. This isn’t to say that autism is always going to be a key part of a person’s identity but it is very common for people to seek out their autistic peer group following a diagnosis. Being part of the autistic peer group and networks can also give people access to knowing themselves better and to having a greater understanding of who they are. People who have spent their lifetime feeling on the outer and that they don’t fit in coming across others who share so much with them can be an absolute liberation.
A diagnosis can also allow access to services and supports for autistic people. These can be really helpful and support people to manage their lives well. Having a diagnosis can mean that you can be an advocate for yourself an others and it can enable you to know where you ‘fit.’
Cons of diagnosis
There are some challenges and disadvantages around having an autism diagnosis. I will ask you to pay attention to these and see if you can spot a similarity between them…One of the cons is being subject to stigma and ableism. Of course undiagnosed autistic people can be subject to stigma and ableism too but the actual label can draw judgement from those in society who are prone to judgement.
Another con is the low expectations that many people have around autism. This is true for kids and adults alike. On being told someone is autistic a lot of people instantly jump into deficits mode and assume that the person will be unable to do anything much at all.
Another challenge for autistic people with a diagnosis is facing discrimination in employment. A diagnosis can result in discrimination at work where an undiagnosed person might just be perceived as ‘odd’ without the application of any stereotypes around autism.
Another issue with a diagnosis is assumptions, micro-aggressions and stereotypes. I think most disability and other diversity groups come with these and they do not help anyone.
Did you spot the common theme in all those cons? The theme is that none of the cons I have mentioned here relate to autism itself or the behaviour or experience of autistic people. They relate to a world which doesn’t understand, respect or include autistic people. These cons are all related to how people interact with and treat autistic people. They are related to stigma, ableism and assumptions rather than anything that autistic people – or autism itself – might be doing. Society has created that stigma ad disadvantage. Those cons would not exist in a world that respected accepted and understood autistic experience.
I will say that I like my autism diagnosis. I really like my autism diagnosis. I am glad that I have it and it has opened a lot of opportunities and understanding for me. Autism is a core part of my character and my identity. For me it is not a label but an identity and central to my very being.