Is a Diagnosis really worth it?

If you asked me two years ago, maybe even last year, if I was aiming to get a diagnosis at some point, I would have undoubtedly said yes. I wanted a diagnosis so bad.

Now, as I've been thinking about it more recently, the negatives, and the obstacles in the way seem to outweigh the positives.

There's a reason I don't have a diagnosis yet. Because its a difficult process to go through, even to start. Just starting the process is terrifying and difficult. Phoning a GP because there's no other option to make an appointment, having to tell the receptionist why you're calling, revealing something that is ultimately a very intimate piece of information to tell a stranger over the phone. Having to deal with their obvious confusion, confirming that this is for you, not a child. Then, if you're lucky, you'll get an appointment, and have to talk about this intimate information to a stranger yet again, this time in more detail.

It really is an intimate thing to talk about with a stranger. "I think I'm autistic, and here's why." There's already so much judgement around autism, I feel like its something that NT's feel weird or uncomfortable talking about a lot of the time. Even I feel a little weird about it sometimes. I can't help but feel that going to a GP as an adult and talking about an autism diagnosis, will just get you judgement. Inside, they'll be judging. Maybe its just my paranoid brain thinking that, I don't know.

Just starting this process is terrifying and exhausting, and frankly, not accessible for people who are actually autistic.

The truth is, the system is not made for autistic people. The autism diagnosis system, is not made for an autistic person to go through alone. It's made for children, accompanied by parents. And so, going through it as an adult is an awkward, often patronising experience.

I've heard too many stories of adults seeking diagnoses and going to get tested, only to be given the same tests they give to literal children. "make a story out of these objects" "Flick through this picture book about frogs and tell the story"

Like.... I'm sorry? I'm a grown adult here, what will me making a story out of objects tell you about whether I'm autistic or not. I'd just sit there feeling rather patronised and offended. Autistic adults are adults. Its not like we all have a mental age of 5 years old. Yes i still often feel anywhere from 16-18 in my head, but by all accounts, that is still the age of a young adult at least. One who doesn't want to be told to make up a story for two other adults.

Also that question in general scares me. I've heard it mentioned, and even as a creative writing student that one part of the test scares me away. What am I supposed to say? Are we personifying the objects, or are we making characters that use the objects? How in depth does this story need to be? just generally, WHAT DO YOU WANT FROM ME???

I don't like vague instructions like that. I think if i ever do get tested and they ask me to do that I'll just shut down and straight up say no, because, excuse my language, but fuck that! No! I am not a child. Just no.

The rest of the test from what I've heard, is just lots and lots of talking. Talking about my own personal thinking process, view of the world, experiences, mental health, childhood. So. Much. Talking.

You're asking me, the autistic who struggles to talk to even people they're close to, to talk in detail about very intimate and personal things. I just can't fathom it. Just thinking about it makes me so exhausted I want to curl in a ball and cry.

A few years ago I may have said it would be worth it for a diagnosis, but I just cannot say the same now. Now I don't feel like I need a doctors validation, I'm very comfortable and confident in my own self diagnosis. A diagnosis will not give me many benefits in the world. Another thing I hear all too often - people get a diagnosis, and then.... nothing. They just get thrown back into the world. There's not really much they can do, other than maybe offer therapy, but most of the therapies the NHS offers anyway, don't really work on autistic people anyway.

In this sense, a diagnosis at this age doesn't have much merit, other than self validation. I'm at a stage where I'm confident enough in my own self diagnosis to tell people I am autistic. I just have to pray they don't start questioning about diagnoses, but hey, if they do get annoyed at me for self diagnosing, then they're not worth keeping anyway. :)

If there's anyone else out there in a similar position, where you're just not sure if a diagnosis is worth it, I want to say - don't feel pressured. If you don't think its worth it, don't bother. Do you're own research into it, do you're own evaluation. If you think it is worth it, then go for it. If you don't think its worth it, then don't bother. Don't put yourself through a tiring, patronising experience for a mediocre output, that you don't really want, just for a slither of self validation and validation from others. It's not worth it.