What autistic gang are you in? Yes, I know that we are all working towards a peace-and-love version of the autistic community, where everyone gets on with everybody else and nobody minds that ONE person who corrects a grammatical error on the post you did about hypersensitivity. But as a category, Autism is a spectrum, therefore broad, meaning that we spend a lot of time consciously or subconsciously further sub-categorising ourselves. Gender differences in autism, functioning differences in autism… do we mask or not mask? What gangs do our special interests put us in, the crocheting autistic gang or the vintage brooch collecting autistic gang? What language do we use: would we describe ourselves as disabled, would we use the term Aspergers? What other conditions do we have, are we in the AuDHD gang, or are we just an autie?
Psychiatry as a profession has also been quite fond of sub-categories for autism: high/low functioning, mild/moderate/severe being examples. But for me, I think that one of the most profound ways to sub categorise autism is by diagnosis. Diagnosis – or lack of it – the age at which it occurs, the support you receive afterwards and whether it was given or sought will have shaped you. Yes, we are all autistic, but our experience in the wider world as well as how we view ourselves, plus our innermost sense of our own difference, will have been coloured by our path to diagnosis.
For ease, efficiency and…well, just because I am autistic and I want to, let’s have a look at the possibilities of diagnostic experience in pairs:
Early/Late
Early diagnosed autism (i.e in childhood) is something that is often thrust upon you rather than sought, simply because of age. Whilst the advantages of early diagnosis can be increased tolerance from your peers, support, and the ability for both you and other people to understand you better, many early diagnosed auties are quick to point out that autism carries a stigma, and being labelled at a young age has not always been an enriching experience. Plus, as a diagnosed child you can be more dependent upon the attitudes and proactivity of your own family towards your autism.
Late diagnosed autism (let’s say late teens and upwards into adulthood) is often something that is sought out and viewed in a positive light by older people, as it finally explains that feeling of difference that we have never quite understood. Of course, a late diagnosis of autism can sometimes come out of the blue and can inspire negative feelings, but as adults we are better placed to understand autism. Often we have more practical agency to make practical changes in our lives afterwards. Late diagnosed autistics tend to carry a lot of baggage: earlier misdiagnoses, mental health issues, experiences of bullying or just otherness that were deeply unsettling for years. However, as adults, especially if we mask, we have the option to disclose our autism or continue to mask in public, which can work to our advantage even if it shouldn’t.
Official/Self
Official diagnosis is time consuming. It is a very lengthy process if you use the NHS and a very expensive one if you go private. It is gruelling, nerve-wracking, it is impossible not to feel judged, and you are very dependent upon your assessing psychiatrist. But official diagnosis is just that: official. If you are diagnosed autistic then it can go on your medical records, you may get access to support (although not always) and other conditions are screened out during the process. I have found that having an official diagnosis makes it easier for other people to accept my autism, and silences the naysayers who think that autism can only look a certain way.
Self-diagnosis is very often the only option for people dismissed by their GP or on an endless wating list with needs that won’t wait. On the plus side, self-diagnosis is empowering, and most of the tools that psychiatrists use to test autism are on the internet, so as long as you do your research and are thorough and honest with yourself, there is no reason why self-diagnosis isn’t accurate. The downsides are imposter syndrome, the fact that an unofficial diagnosis is easier for others to dismiss, and the fact that you may not be autistic, but something else may be going on instead of or alongside your autism.
Given/Sought
I have already covered this a little, but given diagnosis often means that diagnosis is early, which is positive in terms of receiving help, but can lead to feeling a lack of personal agency around your autism.
Sought diagnosis means that diagnosis is often viewed more positively because it is desired, or at least suspected, but the fact that you are having to lead your own diagnosis can be exhausting and mean that you have slipped through the net during childhood.
Supported/Unsupported
Having a circle of people who support your diagnosis journey and its aftermath can make a huge difference when you are autistic. The difference can be practical, helping you support yourself and making lifestyle changes to better accommodate your autism, but it is also emotional. Knowing that you are autistic is a huge step towards understanding and accepting yourself, but it can be frustrating and upsetting if others will not or do not accept it.
Those of us who are autistic but are unsupported, for whatever reason, will often have more of a struggle during and post diagnosis. Lack of understanding by those around us can feel overwhelming. It can trigger burnout, shutdowns and meltdowns. It can also feel as though diagnosis never really happened if other people refuse to acknowledge it.
I think that I should add a caveat here, that although a lot of people’s diagnosis story will be similar based on these categories, everyone is a bit different and everyone’s experience is slightly unique. As you can see, it is not just diagnosis that affects our individual story with autism, but how, when, where we are diagnosed, and the support we do or don’t receive.
So, what would my advice be to someone who is considering diagnosis, either for themselves or for someone else? I would say do your research: there is so much information available online, so many resources, so many autistic people talking about their experiences. Take a good look at yourself, or the person you are thinking about, and come up with some examples of why you think they are autistic. Then, pursue an official diagnosis if you can, and the earlier the better. Go to your GP, or try and see a psychiatrist. If you can’t, then self-diagnosis is an option. Either way, and however it happens, diagnosis is worth it.
