Leave My Diagnosis Alone

I mean here’s the thing about the proposed reduction of autism diagnoses; it’s bullshit. Here’s the other thing; they’ve already done it.

Okay, allow me to explain; the UK NHS rolled out an idea the other week to reduce the number of autism diagnoses to only the most severe cases, which I only didn’t mention last week because I’m also grappling with one of my not-as-infrequent-as-I-would-like low mood episodes, brought on mostly by stuff outside my control. They’re citing stuff like ‘waiting times for diagnosis’ and ‘allocation of resources’ but the point is, it’s quite severely damaging for people like me and my peers who barely make the cut as it is, and have to fight for every additional resource we need because we have all the effects, but on paper we don’t qualify.

The problem I have, in all the outcry over this, is, in a lot of ways, it’s already happened.

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Allow me to explain further; clinically speaking (and drawing heavily on my lectures here), autistic spectrum disorders are split into four syndromes:

These are diagnosed by the DSM, or Diagnostic and Statistics Manual, published by the APA and is used worldwide for the diagnosis of psychiatric and developmental disorders. It’s also the research criteria used by academics and researchers, but that’s beside the point.

The most recent DSM – DSM-5, the fifth edition released in 2013 – made several revisions to autism and autism diagnoses; namely, the removal of Aspergers and PDD NOS to be replaced by the umbrella term of ‘Autism Spectrum Disorder.’ They’ve also tightened the criteria, in the name of making diagnostics fairer and more valid. What they don’t realise, as the ARI article points out, and that the NAS point out in the BBC article, is that this runs the risk of us ‘high functioning’ lot getting left out in the cold. Just because we have higher IQ’s and are better able to learn how to socially function, doesn’t mean we don’t need resources; extra tuition, more time in exams, specialist equipment. It’s tough enough getting that help, and without that all important piece of paper telling the Powers That Be that we are entitled to them, we’re not getting squat.

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Under the rules, I have never qualified for an official diagnosis of Asperger’s, despite showing all the classic traits, and it was like a kick in the gut when my lecturer, quite calmly, explained that a part of my identity no longer existed, consumed by an umbrella term that doesn’t necessarily describe me the same way as ‘dyspraxic Aspie’ does. What might happen within the NHS is far, far more drastic a shift and if that happens, hundreds of thousands of people like me face the same kick, but from the system that’s supposed to care for them, not throw them away. I love the NHS, but sometimes it can be a bit bloody stupid.

I’ve lived with this ‘borderline’ thing for 23 years, and I’m used to it. There are people out there who have never been diagnosed, and now, under these DSM-5 revisions, might never be. And under the new NHS plans, still more people could lose out. That cannot and should not happen.

Hopefully it doesn’t happen – the NHS plans are only plans right now – but the things rolling around in the news these days, like dementia taxes and the US President pulling out of the Paris Agreement (aka. the biggest and most comprehensive climate change deal ever), I’ve rather lost faith in the abilities of the people leading us to make sound choices. Hopefully all that changes in the next couple of weeks, but we’ll see.

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Anyway, I should put that out of my mind for a while. It’s my birthday this weekend, and I’m attempting to organise a party. This could either go splendidly or down like a lead balloon. Low mood brought on by consistent, niggling pokes the universe seems intent on giving me right now is not doing wonders for my state of mind.

Oh well, I’ll crank it out. I usually do.

Stay awesome, everyone.

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