I’ve seen a few posts from people who’ve been given a non-diagnosis on the NHS. And the advice either seems to be to pursue a private diagnosis or self-identify.
My non-diagnosis story is a little different. Whilst on the NHS waiting list, I decided to sell my car and pursue a private diagnosis. It cost £1,750. I had one zoom call which lasted about an hour and a half and another one with a different clinician face to face. They asked for no supporting paperwork but I sent in reams of stuff.
I had a feedback session recently, with the first clinician from the zoom call. She very matter-of-fact started the feedback with “So, we don’t think there’s enough evidence to meet the diagnostic criteria”. I shutdown from there. I didn’t know what to say or ask. I wanted to burst into tears or end the call immediately. I stayed on for about 10 minutes unable to look at the screen. She kept on talking but I couldn’t take in much of what she said.
Sadly, I know it might seem unlikely they’ve got it wrong when I’ve paid for the privilege. But from what I could take in during the feedback session (which wasn’t much as I was so distressed!) the reasoning was so outdated. Apparently there was evidence of non-verbal communication use (I nodded to say yes). I could have a brief two-way conversation. I didn’t have any motor peculiarities (when I’d explained in writing my possible stimming is tweaking my arm and leg muscles or constantly moving my toes and ankles when anxious or overstimulated, which would be obviously unseen on a zoom call or under a desk!). My examples of hiding behind and copying older siblings wasn’t unusual (which is something I inexplicably kept bringing up in the zoom call, when it’s only one example I’d previously thought might be a sign of my lifelong masking behaviour).
I’m waiting on the full report. They won’t tell me more before that’s issued in a few weeks. If it explains things in a better way, then fine. But I doubt it will. I feel like the hope I’d had has gone that other people might need to start listening to me and stop telling me I’m like everyone else. My individual struggles aren’t taken seriously. Other than my parents, everyone I’ve told is like “at least you can move on now” as if it’s nothing! But this possible diagnosis was going to make sense of things. It was going to be life affirming.
But, one of the big things I’ve always said is I don’t want to encroach on the autistic community. My son is autistic. And I know not everyone is a bit autistic. I either am or I’m not. But, I was hoping I would get a diagnosis to make sense of my whole life, instead I’m left with even more of a puzzle. Either I’ve somehow been misdiagnosed or I’ve had lifelong depression (the only alternative she gave), which explains the burnouts and shutdowns that have occurred throughout my life in different unsuited environments.
I don’t suppose anyone else has a similar experience or words of advice?
