Published on 12, July, 2020
Hi.
This is mostly just a vent post and I guess whatever the experts say goes.
I'm from the UK and I've been going though the process of getting a diagnosis for years. Although I showed enough symptoms to get through multiple appointments where they would have been cut off earlier if my initial assessor suspected I wasn't on the spectrum I've just received the result that I do not meet the criteria.
Apparently it all came down to my ADOS assessor saying I didn't show a single trait of autism despite the other assessor noting that I did and dozens of other psychologists in the past have pointed out my body language and how I stim and avoid eye contact, etc. I would have been willing to accept this is I just missed the threshold but to have scored 0 just feels like a complete denial of all the bullying and issues I've ever faced due to these social and communication problems.
I've looked up the clinic who assessed me and literally every review says that the person didn't receive an adult diagnosis or any support and they persued a successful second opinion from a different service on the NHS or private and these places told them it was the easiest diagnosis they've made and they couldn't understand how anyone would think they don't display any traits of ASD.
Does anyone have any tips on where to go from here, it just feels dehumanising to bleed your heart out to these assessors for years telling them all the problems you've faced and them even agreeing it's possible you're on the spectrum just to get a letter right at the end saying I don't meet the criteria and they're cutting me off the service.
Just needed to rant, thank you if you read this.
Why is everything like you describe such a 'lottery'? I've spoken to two GPs regarding autism during appointments - one was so dismissive and uninterested that she didn't even bother to respond to my saying "Goodbye" - twice - at the appointment's end; the other doctor was so alarmed by my presumably 'autistic behaviour' that she immediately arranged the referral process. I swiftly received and completed a form and returned it by post.
Despite my continual down-playing of my issues - due to a silly sense of convention, habit of politeness ("I'm sorry to trouble you with my petty problems"/"You must have more-deserving cases to attend to" etc) and also a contextually-bizarre desire to appear 'normal' - I was told that I would be having an assessment in the near-future within *minutes* of arriving at a simple advice session...and yet, my troubles do not impact my life anywhere near as badly as many other forum members. So why has my case been regarded as both serious and yet also unworthy of even basic discussion?
One can be (farcically) scored 'zero' in an outsourced PIP assessment...yet an actual DWP assessment concludes that one's entirely non-physical problems are so serious that you're not even obliged to seek work, let alone actually do a job; why the difference?
One's doctor can label your deep and tear-filled depression as merely 'low mood', countered with the most low-risk, low-dose medication...that a different doctor subsequently quadruples in dosage/strength. You go mute for a week, out of contact, and council officials practically knock your door down and shout your first name through the letterbox in fear that you're suicidal, despite having absolutely no history of suicidal thoughts, acts, calling helplines or even of self-harming in any way. The most life-threatening things that happen to me are either when I slightly burn toast, or fall three inches off the bathroom-scales after worrying about eating too much slightly burnt toast; maybe it's all the added weight. Ironically, their well-intended but disturbingly loud actions almost scared me to death; it took literally weeks for me to recover half-decent stability. I am very thankful for their concern but, generally, where is the objectivity in all this? These examples are obviously my own experiences but the general point holds: why is it so often 'all or nothing'?
All of these mixed reactions & outcomes occurred *after* four medical professionals, on different and separate occasions, alerted me to my autistic traits and suggested that I try to get referred for an assessment. As anyone can read, this post isn't a personal rant at all, simply because I've mostly been treated very well and also professionally by the people involved (bar one, perhaps). I am very grateful to them. So the fact that I'm complaining is effectively on behalf of people like Kyle...people who've been unlucky in a lottery that should never exist.
Beautifully written and has the unmistakable ring of authentic 'lived' realism. Like the actual Lotto, some of us choose to play, whilst others choose not to. "It could be you".....yea, OK, right, maybe......but is it really worth the investment, given the probable resultant return?
Thanks. It shows how unfair the process can be for some people that I got exasperated even though I myself happen to have been treated so well.
I feel the same, and thanks for putting so well into words what I don’t have the energy to write myself but agree with hugely. I think that lottery factor is it. It’s like the guilt of having had one of the good assessments by chance is it’s own firm of PTSD - the horror that it’s so unfairly calibrated out there.