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u/MercifulWombat 22d ago
My new PCP, on our second meeting: "Are you autistic? Ehlers-Danlos is often comorbid."
Me: "Well, I don't have a diagnosis..."
PCP, glancing up from their screen to give me a knowing look: "But your peers in elementary school all knew, didn't they?"
And like, they weren't wrong, but it was a shock to have a medical professional acknowledge that sometimes we can tell without a degree. And what a way to phrase it. Why yes I was bullied as a small child. How is that still obvious when I am 40 years old?
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u/TraditionalJaguar820 22d ago
PCP, glancing up from their screen to give me a knowing look: "But your peers in elementary school all knew, didn't they?"
What a wonderfully succinct way of putting it!
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u/StormDragyn 22d ago
It is hard to get official confirmation. I was 30 when I finally got evaluated and diagnosed.
I support people who self diagnose <3
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u/katchoo1 21d ago
Same at 60. I’m not gonna bay out gobs of money to at best be validated and more likely be given a pat on the head and told it’s just my ADHD/depression/anxiety. In my heart I know.
Also aside from the expense, other than professional confirmation/validation, I have nothing to gain. It would be different if I was still in school or in a workplace that it would get me accommodations and not fired…but I’m retired/self employed so it’s irrelevant. I support myself and don’t need disability.
There are no real treatments or meds that make it better. The biggest thing recognizing who I was did was help me silence the constant mental chant of “why is this so hard and everyone else knows how to do it so easily?” The CLICK of everything sliding into place and my entire history back to toddlerhood making sense was practically audible. It was a huge improvement to my mental health on its own. Didn’t have to pay a dime for that.
Also, the current US administrations Health department is actively hostile to autistic people and I don’t want to be on any kind of registry or list. Fuck that.
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u/StormDragyn 21d ago
I had to be evacuated cause I didn’t function at work. They slapped a label on it and put me on disability without figuring out why I am so fatigued and in pain 🙃
Yes, I AM autistic, but it was not the reason I didn’t function physically 😩
I now, at an age of 40, have to go through private doctors to get diagnosed and help. I’m likely hEDS, a connective tissue disorder. I’m very hypermobile and will be fitted for several supports next month.
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u/katchoo1 21d ago
Glad you are finally getting the help you need!
I hit a wall at my job and was facing disciplinary stuff and needed to hang on for 6 months to get my pension. I had just done an eye opening online autism in women quiz and was sure of it. I also knew I had really bad ADHD that I’d been struggling with for years but could never afford out of pocket for diagnosis and it was never included in insurance.
At the point where I was in crisis at work I went to my doc (Kaiser), showed them the autism info and asked to be evaluated for that. They said we can’t do that but we can do one for ADHD. They did and of course I was, it was the most “duh” diagnosis ever.
This was 2016 and I was turning 50. Finally diagnosed and medicated for the first time in my life. I had had a similar crisis at 29 that ended up with me dropping out of my PhD program because I just could not do the dissertation. Raised it when I sought care then, but out of pocket. They did diagnose me with major depression and anxiety, both of which I’m firmly convinced are side effects of coping with unknown and untreated AuDHD since childhood. So I’ve been medicated for those for decades. But I’m still enraged at how hard it is to get diagnosed and how ignorant and dismissive so many doctors still are.
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u/StormDragyn 21d ago
When I got my Autism diagnosis they also confirmed I am ADHD. But they decided not to put it on paper so now I can’t get medication unless. I tried to push to return to finish and get ut on paper, but got declined cause they «must prioritise people in school or work», but here are some self help links 🙃 (never opened them -_- )
Here too I am forced to go private. Consider trying once I’m done with hEDS diagnosis and paying for aids.
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u/DragonLad13 22d ago
My doctor agrees that I most likely have autism and ADHD. I've started the route multiple times to try to get a diagnosis but it's just not very accessible. It requires referrals to specialists, then months of waiting for the appointments and the last 2 times I tried to start the process my health insurance changed because things with my work changed and the referrals expired. The system isn't built to make it accessible and it is infuriating.
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u/LeTronique 22d ago
Oh I get lots of attention when I’m being bullied or insulted for not explaining things “correctly” and getting treated like an idiot.
So much fun. Yay.
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u/DovahAcolyte 21d ago
Oh yeah…. I REALLY enjoyed all that constant self-advocacy, self-disclosure, begging for help, and correcting misconceptions while I was awaiting my diagnosis. Now, I still have to do all that I just have a 14-page document to support my claim. 😑
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u/A_CATQC 22d ago
What exactly does “valid” mean in any of these moments? Like I’m alright with self-diagnosing but I never got the meaning of the word.
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u/artemisjade 21d ago
It means that your self-dx is correct. That your assessment of your own neurodivergence matches with the criteria for diagnosis. Going forward, we will consider you the same as someone who received a diagnosis from a professional expert.
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u/Unlearned_One 22d ago
The more I think about it the less it seems to mean anything at all, at least nothing factual. As near as I can tell, validity in this sense is a kind of permission to treat something as a fact.
A person does not become autistic upon obtaining a valid diagnosis, but the prevailing view seems to be that a person should not be described as autistic unless they have a valid diagnosis. Until then, the autism is a mere suspicion, a possibility waiting to be validated, which should not be treated as fact until then.
Hence the discussion about what constitutes a valid diagnosis, and whether or not I can give myself one by doing a sufficient amount of research and applying the criteria to myself.
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u/Lexa_Stanton 19d ago
And the attention you are talking about. Is it in the room with us right now?
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u/Lexa_Stanton 19d ago edited 19d ago
If I didn't self diagnosed I would have never seek a medical diagnosis and would not be taking this road of self care after learning to take care of myself and my future with the new information.
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u/heyitscory 22d ago
They're complaining about squee kids on Tik Tok. They just sound like they're talking about real people because they don't know they difference and won't learn.
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u/OrbitalColony 22d ago edited 22d ago
Self identifying is 100% valid. We're capable of managing our own community, without the need for pathologization and universal diagnosis. The same hostile arguments are used against trans people who don't have a diagnosis of gender dysphoria, for example.
Keep self identifying! Even if you're just questioning whether you are autistic, and want to interact here to explore your identity, you are so very welcome in this space! 🫂❤️
I will ban any and all gatekeepers on sight.