When you are diagnosed as being Autistic or having ADHD, quite often you find that you have been diagnosed because you want to understand why you feel so isolated. Therefore it makes sense to find a place within a community that should hold you tight and embrace you as one of their own.
The difficulty is that too often, the community decides what is wrong and what is right and self-appointed leaders spring up, ordering everyone to fall in line and not stray from that line for fear of public humiliation. They hector their followers and, regrettably, too often those followers follow like sheep, not thinking for themselves but only too willing to jump on the bandwagon of hate that spews forth from their leader’s Twitter.
I have always found it bizarre that a community that wants the NT world to be more understanding and helpful to them, launches attacks on that very same NT world, with alarming frequency and viciousness. The slightest misstep is greeted with derision, but more than that, genuine hate. Accusations are bandied about that the NT is acting deliberately or causing harm, and there is no tolerance at all for a simple mistake or error. You either understand everything immediately and don’t put a foot wrong, or else you are deemed to be an enemy for life. I wonder then, how the NT world can possibly help us when we don’t want to help them understand us in the first place. Shouldn’t we be educating them instead of screaming abuse at them?
Very recently, there has been a documentary on the BBC about people who have received an ADHD diagnosis privately, and how that diagnosis may be flawed due to how it was given. The journalist involved has been subjected to the most horrific abuse on social media by a community that has, yet again, not attempted to understand the rationale behind the documentary, but has accused the journalist and the BBC of something akin to murder.
Rory Carson has been accused of lying in order to get his diagnosis. As he has explained several times, he believed he might have ADHD and answered the questions to the best of his knowledge. That is not lying.
We know that he doesn’t have ADHD after he undertook a thorough assessment on the NHS, but his investigation exposed some alarming facts that the community seems perfectly happy to ignore in its pursuit of hating on him. He was diagnosed by a Pharmacist in one case, not a psychiatrist. Then by a psychologist in another, a psychologist who looked bored throughout, and merely asked a series of basic questions that you or I could have asked. In neither case was he asked about his previous history and detailed information taken in order to gain a better and more rounded view of the likelihood that he had ADHD.
He was prescribed, or would have been, strong medicines that should not be prescribed unless the diagnosis is correct. But the community doesn’t care about that, the fact he was concerned that these drugs might cause harm in the wrong hands and to the wrong people.
Instead, the community has accused him of ruining people’s lives; of setting back the diagnostic timeframe for others, and of generally upsetting the apple cart. They scream that this is wrong, that the BBC are terrible, that Rory is a fraud and that somehow this is the government’s fault for not providing sufficient funding so that any person believing they have ADHD are diagnosed in a timely manner.
They accuse him of damaging people because some doctors, post documentary, have now ceased to prescribe the medication to some patients. They don’t turn their focus upon those doctors and ask why their opinion has suddenly changed, they just launch into Rory and the BBC with wild accusations and threats.
I believe that the documentary highlighted serious flaws in the system. I believe that going private does put a certain amount of added ‘pressure’ for an ADHD diagnosis, because, if we are honest, we don’t want to pay out and get nothing back, and these clinics are aware of that. And I don’t believe that drugs should be prescribed unless there is an actual condition to treat. These drugs are powerful with many side effects and wiser people than me have always said, don’t take a drug you don’t need. It messes up your system.
Yes, I want those with genuine conditions (Autism, ADHD etc) to get a diagnosis, but one given under proper conditions and after proper and thorough consideration. Yes, I know there’s a chronic underfunding issue in the NHS and such diagnoses are amongst many that need to be considered. I understand why people go private but this documentary does expose the need to be cautious. You can look up the diagnostic criteria for ADHD online. If the questions you are asked don’t cover those criteria and your overall mental health and history aren’t considered, shouldn’t you be asking yourself if the private system is working? Nobody should accept a 30-minute diagnosis based on a questionnaire. It just isn’t right. Is it?
The documentary was short, but that led to an accusation that he didn’t do enough, that Rory hadn’t seen more clinics and more practitioners. Well, what do you want? You’re accusing him of setting back the diagnosis procedure as it is, so would more examples have made any difference? And how many would have satisfied you? 10? 20? 100? Who can say?
I have strived to be part of this Autism/ADHD community. I have tried to be supportive and understanding, but when explaining that I was diagnosed as Aspergers because that was still a valid diagnosis in 2009, simply led to accusations of me being a Nazi and Antisemite and a witch-hunt was conducted by someone who I trusted and I received the most horrific abuse from the leaders I mentioned earlier, encouraging their followers to jump in and abuse me as well because it’s such fun to see if you can send an already suicidal man over the edge.
And this is MY community. Allegedly. A community where I should be safe to talk about me. About how I feel. About MY diagnosis. I’m not brilliant nor clever like so many of my fellow Autistic people. I don’t scream about the superiority of my diagnosis, nor have I ever claimed to be high-functioning or talented in any way, shape or form. I’m just me, but I can’t be me because that’s not good enough.
I don’t fit in. I’ve been driven out by the hate. The hate from a community that asks for tolerance and support yet gives none in return. A community that wants the NT world to understand them, whilst showing a complete unwillingness to do the same by return. A community that takes umbrage at everything it perceives was designed to attack or belittle them, even when it doesn’t and its motives were unremarkable.
I’m sorry but I can’t do this any longer.
I can’t keep swimming against the tide, wondering where the next attack will come from and whether I will survive it. I can’t keep hoping for reason when all I see is raw hate and blind following of leaders who I didn’t elect.
I don’t want to live like this.
So, when I’m gone, think about why you did what you did and ask yourself if you’re pleased with yourself. Think about how tolerant you were of other’s opinions and how supportive you were.
But you won’t care. I’ll just be another statistic and you’ll use me in that way, to prove your point whilst ignoring mine.