Everything I Love Is Canceled

Neurodivergent Masking Can Show Up As:

Social mimicking of peers

Suppressing natural reactions or stimming

Over explaining yourself

Apologizing excessively

Pretending to understand when you don’t

Overcompensating in work or school

Smiling or laughing when uncomfortable

Constantly monitoring behavior

Hiding sensory preferences or needs

About a week later, I got a questionnaire, on paper, through the post. As though I were living in 19ThePast. It had a letter asking me to fill it out and post it back. It took me three weeks to buy an envelope. It took another to actually fill it out. When I did, I inserted the questionnaire, carefully wrote out the address on the envelope, stamped it, sealed it, and looked down to see the questionnaire still on the sofa. I had tried to post them back their own letter requesting I fill out the questionnaire. I, for one, consider this part of the diagnostic criteria.

Anyway, I finally sent it a week later, so it took five weeks in all. That was, as I say, three years ago.

Today, I had to go to the doctor for unrelated reasons, and I was like, "By the way. Do we know what's happening with the ADHD assessment? I know it's a long waiting list, but it's been three years and I literally never heard anything back. Thoughts?"

And today's doctor (a different one) pulled up my history to have a little look, and discovered that a week after I'd initially gone in - during the time I was supposed to fill out the questionnaire but was still vaguely trying to remember to buy an envelope - the referral people had responded to my GP and said "She hasn't done a questionnaire so we can't assess her." At which point, my GP was supposed to call and share this with me so we could discuss

He did not.

And then, of course, they did get my questionnaire, and he should have forwarded THAT to the assessment people at that point to advance the process.

He did not.

Which means I have just wasted three years and a week waiting for an assessment that was never coming. The whole thing came to an end. That was that. At no point did that first doctor ever reconsider any part of my case. He was told they couldn't proceed, and didn't even think to tell me; he just thought "Well, sucks to be her" and then moved the fuck on with his life, I presume.

And you know, I don't want to be too damning towards the NHS; apart from anything else, last year I found a lump in one breast, and from the day I noticed and called the GP to the hospital staff going "That's a cyst, let's drain it. You're cured." was... 6 days? No, 5. Start to finish. I called on the Wednesday, they removed it on the Monday. And even that was a delayed time, because of the weekend in between, AND it didn't cost a penny.

I was like, “well, I’m in distress. I have an excellent brain that’s in a lot of pain.”

“But you’re, again, clearly capable of managing it. There is no evidence of having a condition that impacts on your life.”

I was given to understand that someone whose material circumstances indicate an exceptionally high-performing brain is just being greedy to ask for more ability, in an overloaded system where people are suffering.

After several rounds of prodding GPs have vaguely mentioned that I could pay £1000 for a “fast track” private diagnosis. Unfortunately the NHS is possibly-unlikely to “honour” that with NHS-supported medication, depending. (Also, high-performing doesn’t mean highly-paid; people just hear the STEM words and assume that you must make bank based on the syllables.)

There are entire established DeafBlind communities! There is a DeafBlind language, Protactile. There are DeafBlind people on the internet around you.

Here is a video I really liked about Protactile.

The essay "Against Access" by John Lee Clark, who is DeafBlind, goes around tumblr sometimes.

if the audio says “fuck” then the subtitle should also say “fuck”

says “fuck” then the subtitle

should also say “fuck”

In the video the survivor said “Never seek a permanent solution to a temporary problem. And they’re all temporary problems.”

It’s very honest. It’s very clear. It’s very kind. It presents you with a lot of information and a lot of understanding and lets you take it all in like the autonomous human you are, and make decisions from an informed place. It goes over the reality of suicide attempts, pain involved, likelihoods of survival, after effects of attempts, and how to get help if you want it after reading all of that and learning about the reality of suicide attempts.

You can read it for free here: https://qprinstitute.com/pdfs/Forever_Decision.pdf