this post was submitted on 05 Sep 2023
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Autism
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I think that the biggest issue is that in many places (the UK is a personal example), the services are so utterly over stretched and overflowing capacity that there is literal years long waiting lists in some parts of the country.
In York area, unless you become a priority case due to being a risk of self/other harm then they have a waiting list of over 4000 people, with the capacity to only process 160ish per year. I'll let you figure out that maths by yourself. It's fucking hopeless. So with an official diagnosis effectively impossible to self 'diagnose' is your only option and you have to hope that the people around you are supportive enough to trust you and help regardless.
Not to mention the difficulty in even getting a referral to an assessment for the diagnosis. The steps in place are practically brick walls to us with the requirements needed to fulfill. You need to get an appointment with your GP (good luck since it's not an emergency), then you need to hope they have some understanding/experience enough to identify if you would be suitable for a referral, then you need to convince them you need a referral, then you have to wait for the specialist to pick you up and be put on the wait list, blah blah blah.
Why go through all that energy when you can just 'diagnose' yourself and carry on with struggling the way you always have. After all, as long as you keep your routine it'll be fine...right?
Except it fucking isn't, but what other choice is there?
Ah, that makes sense why people feel so strongly about advocating for self-diagnosis. It also makes sense why some people are really concerned that they weren't autistic enough at their assessments because re-evaluation could be near impossible. That's such a disservice to the autistic community. What do they expect people to do while they wait for assessment? It's not like people are doing great and think, "Maybe all my success is because I'm autistic." If this comes up, there are probably some considerable difficulties going on for someone to consider they're autistic. I was not aware of that and sorry you're in that situation. Thank you for sharing.
If you have the energy to endure the process, it might still be a good idea to get on the wait-list. Three years are going to go by whether you're on it or not. However, I could see being pretty distraught should the GP be invalidating by denying a referral and potentially having that in your national medical record. Another idea would be to maybe find a way to save up little by little to see a private provider, even if it takes a few years.
BTW, I want to be clear that I'm thinking of ways you could get assessed only because the diagnosis was very helpful for me to make sense of things and access proper autism services.
I'm currently not sure how I feel about a proper official diagnosis at this stage. With the stigma around mental health illnesses 8 worry it'll just be used against me. My journey with this is still very young (read: days) so a lot of stuff I'm finding out quite fresh and this particular nugget of info was as soon as this very morning.
There are other routes you can go through such as charities, the main one being 'Right to Choose' who support you with how to approach your GP, templates for letters, what to say to the various people you need to speak to and such. They also act as a tool for you to find support groups, specialists etc etc.
Sounds amazing, right? Hell yeah. Except they're so utterly overflowing they've been closed to new referrals/applicants since the end of August.
2 weeks too late. Honestly, man. You can't make this stuff up.
That sounds incredibly frustrating. Feel free to reach out to the community if you want! There is a hunch of helpful people on here, and we even have a chat going that you can reach via the sidebar.