There are many different reasons that an adult may suddenly realize that they are on the spectrum. A common pathway is to have a child on the autistic spectrum and then recognize these characteristics in yourself. Perhaps a family member or friend who is either autistic themselves or who has some experience of autistic people may suggest that you have some form of autism (which is what happened in my case). You start reading and discover that the more you read about the subject, the more obvious it becomes.
For many people, self-diagnosis is enough. If you have done your research, obsessed about it endlessly, done every available test, spent countless hours on online forums/social media talking to autistic people and learning more about autism and everything you read makes you more and more convinced that you are autistic, then I would suggest that there is a good chance that you are on the spectrum. It is also possible of course that you are not autistic.
There are many people for whom a formal diagnosis is impossible due to financial constraints or who simply don’t feel the need.
For other people, the need to get a formal diagnosis becomes extremely important. Even though they may strongly believe that they are autistic, they need to be 100% sure, not 99%. Without formal diagnosis, there will always be an unacceptable element of doubt in their mind.
Most people who are late diagnosed have grown up knowing that they were in some way different to most other people. Having a diagnosis enables you to understand the difficulties that you have had throughout your life and stop blaming yourself. A diagnosis can bring a sense of calm, enabling you to move on with your life knowing that ‘the big mystery’ has been solved.
If you have spent your entire life trying your hardest to fit in and failing, you no longer have to believe that it is your fault. Having a diagnosis may let you accept that you don’t enjoy certain situations for a reason and the reason was NOT that you were a sub-standard human being. For example, I believed that I failed to enjoy most social events because I didn’t try hard enough and if I could just improve my skills by a tiny amount, then I would begin to feel at ease and maybe one day I would feel like a ‘normal’ person. Now I can relax, secure in the knowledge that that is extremely unlikely to ever happen and I can devote my time to pursuits that actually make me happy.
There are many instances of people with an ASD who have previously been diagnosed with other psychiatric conditions and even been prescribed unnecessary medication. This particularly applies to females, as many doctors still believe that ASDs are primarily male conditions and are therefore not expecting to see the signs of autism in a girl or woman. Luckily, this attitude seems to be changing.
Sometimes, having an official diagnosis can change someone’s attitude. In one friend’s case, it went from sneering disbelief to genuine fascination. It can, on the other hand cause people you have known for a long time to start treating you differently, which is not always a good thing. My mother is one of them. She has always treated my like a 5 year old for some reason, probably because I didn’t do the whole marriage/kids/job/car thing, but it definitely seems to have got worse since my diagnosis. I wish I’d never told her.
- Mother: “Are you sure you’re going to be alright going around all the shops on your own?”
- Me: “I’ll be fine, I’ve had 50 years of practice”
You may also be able to get some concessions at your place of work (assuming that you decide to tell them) or access support services (if there are any).
I also have to mention the unfortunate fact that some people on the spectrum seem to be prejudiced against those who have self-diagnosed. Before my diagnosis, I spent a lot of time on various online autism and Asperger’s forums, where I learned a huge amount about autism and met some really interesting people. I made a decision never to post anything until I had a formal diagnosis, as I didn’t want to leave myself open to hostility, but maybe that’s just me being obsessive about taking precautions (as usual). A formal diagnosis will at least protect you from this kind of nastiness.
Those who have read about some of my own post-diagnostic experiences may be put off from seeking a formal diagnosis, but my experiences are not necessarily representative. I don’t believe in sanitising anything and have a tendency to tell the truth unless I have a compelling reason to do otherwise (!) Most people I’ve come across state that getting a formal diagnosis was definitely a positive thing for them, so there’s a good chance that it will be positive for you too.
It was positive for me too in many ways. I’m one of those who needed to know 100% if I was on the spectrum or not. If I hadn’t had a formal assessment, I would still be lying awake at night agonising about it.