Thread by @QuiescentDork, The conversation surrounding Prof. Dame Uta Frith's conference talk is really bothering [...]

The conversation surrounding Prof. Dame Uta Frith's conference talk is really bothering me I have to admit. I'm no specialist in diagnostic processes.. as Bones would say "Dammit Jim, I'm a mathematician not a doctor!" but I have deep concerns that are making me wobble.

I'm currently 50, and all things being equal and with luck, I should have a good 20 years left in me. Even if I live to 80 THE VAST MAJORITY of my life I was un-diagnosed autistic. I was in my mid to late 40's when I finally received my diagnosis and I finally understood myself.

Prior to my diagnosis I was told I had anxiety, I had depression, I had suicidal ideation etc etc I was told the WHAT, but never told the WHY?

"Yes I'm depressed.. Why?"
"You are depressed because you are depressed. When you get over your depression you will not be depressed"

That was a paraphrase of a conversation I had with a well meaning GP. "People get depressed" he said "Life is a rollercoaster with ups and downs. You're on a down at the moment, soon you will be on an up"

Honestly didn't help. I've always hated rollercoasters!!

I was sent to counselling, talking therapies, CBT, NLP, etc all very expensive and very pointless. I might get to think about things a bit differently for a while but underlying it all was my confusion over why I found so many things so gosh darned hard.

"I don't like crowds!" "You need to build up, go into larger and larger spaces, acclimatise yourself!"

"I hate loud noises!" "Everyone does!"

"I dislike [FOOD TEXTURE]" "You're an adult and that's what fussy kids do. You're not a child now!"

etc

for MOST OF MY LIFE I felt broken and wrong. I never felt like I fitted in anywhere. I could be in a crowd of "friends" and still feel totally alone. I felt damaged, I felt unloved, unwanted and useless. I attempted suicide, I did not succeed (d'uh obviously ! - Ed)

Then one counselling session the therapist looked at me and said "this is going to sound a little odd, but hear me out.. have you ever considered you might be autistic?"

And I actually remember laughing

"of course not. I'm nothing like Rainman" ( well....)

I only knew of the poor autism stereotypes floating around. Autism was a disability that (as far as I knew) rendered the individual unable to manage themselves and their lives and need constant care. I had a job, I had a wife by this point. I had a house and a mortgage.

However at her request I looked into it, read up on the symptoms, did a few online tests, began to consider the possibility that I *MIGHT* be. Then decided to go for an official diagnosis. My then GP refused saying "you've got this far without so you don't obviously need a DX"

I went private (which was an unmitigated expensive disaster I do not wish to go into again. Needless to say it involved an unfair dismissal and a bunch of shyster corporate lawyers TRYING to dismiss my diagnosis as invalid due to paperwork inconsistencies

but that's another long story.

I eventually got a second NHS diagnosis from my new GP (I'd since moved home with my wife) and I felt freed.

I never felt happy with my first DX due to the legal problems and them trying their hardest to declare it invalid. I felt a fraud

Getting second confirmation and having it on my medical record cemented it in reality for me. I WAS AUTISTIC !

So much was explained now.

Why I felt uneasy in crowds? AUTISM!
Why I hated certain sensory input? AUTISM!
Why I dislike some foods? FUSSY SCOTSMAN... ALSO AUTISM!

I found something that didn't just give the the WHAT but also explained WHY. I am still prone to periods of anxiety and depression but now I know WHY. I know WHY I feel like I don't fit in. My Autism Diagnosis wasn't a magic wand that made the bad stuff vanish but explained it.

Then I watched that video.. and all those fears of feeling like a fraud came back. Could they redefine what Autism is? Could they, like the shyster lawyers, rip my diagnosis from me and declare me "normal"? Would I be back as square one and simply feeling broken and damaged?

If these well meaning scientists decide to strip away my WHY again.. then I'm only left with the WHAT once more. What I'm feeling, all those feelings of uselessness and worthlessness. Only this time with no explanation and I'm afraid I could not take that again.

Sure I may not be "Disabled" by some people's definition of the word. I do not need a carer, I fend for myself, I'm successful, married, financially stable.

I'm also congenitally anosmic. That to is also not a "disability" per se. I manage quite well without my sense of smell.

My Anosmia like my Autism don't SIGNIFICANTLY limit my life experiences. Sure I find certain things difficult (public speaking) or impossible (choosing perfumes or detecting gas leaks!) but for 99.999% of my life's experiences I'm not at a significant disadvantage.

So no, I PERSONALLY would say of MYSELF that I am NOT disabled. But I *AM* affected. I'm not totally untouched. My life does has challenges and problems albeit mostly minor (apart from occasional food poisoning bouts or nearly blowing up my kitchen... )

but the idea of someone stripping away my diagnosis terrifies me. Even her statement, her words carry clout and weight. Her words can be used to sew doubt on my diagnosis.

"ah but Frith says you're probably misdiagnosed!"

Perhaps people ARE being misdiagnosed but I think the bigger problem is people ARE being missed. I don't think there's a surge in autism cases. I , like many others, think better diagnostic processes are picking up people like me. The ones who slipped through the net.

I have been very uneasy after watching that video. For someone so calmly to seemingly declare my diagnosis invalid has , for the first time in years, left me feeling like ending it all wouldn't be so bad after all.

I won't. Don't worry. but it brought back so many bad feelings

(update.. So many typos. Sew? I mean Sow. To? I mean Too... oh well, it is what it is. :D )

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