Slowly, I started to heal, and we started to come to terms with what had happened. It has taken me nearly a month to be able to write about the assessment – the first time I tried I got one paragraph in and was shaking so badly my fingers wouldn’t work to type. I had to give up and save the file for later.
I have tried, as far as possible to analyse what happened – since that is my way of coping with things. I have asked myself why it is important to me to have a formal diagnosis (that will, if I can manage to translate the thoughts in my head into coherent words, be discussed in a future post), and I have tried to work out just why what happened at the end of November was so devastating.
After I published the poem about living hour by hour on my facebook wall I gently started to interact with other human beings again. It seemed like people might be, even if disbelieving, sympathetic to how I felt. I also realised that however bad revealing publicly that I was autistic might be, it couldn’t be worse than living the lie that I had been doing. That was making me want to be dead. Even if I lost all but three of my facebook friends, was hounded off the internet for being a fraud, and people all told me to stop being so stupid, then maybe even that was better than being dead – the one thing that is certain is that having no friends and being thought an idiot is potentially reversible, being dead is not.
So I trashed the original first post for this blog and wrote another one. I kept the second and third posts, which I had already written. And I went for the “publish and be damned” approach. My ability to mask my autism, even online, had fallen to bits, and I needed to talk about it. I needed to get on with life – 45 years is quite long enough to wait. I knew there was no way I could properly start to work out how to live while I was still hiding something that is such a big part of me. Life had become too difficult to do anything else.
I’m still finding it challenging to comment on official pages and so on without an official diagnosis. I wish I was confident enough that I didn’t need one, but at the moment I’m not. My sort of confidence is a strange beast – I can stand up and play music in front of people, I can give presentations to a room full of people, but imagining I have a right to say anything on the subject of autism without an official diagnosis is terrifying. It’s why the only publicity I’ve given this blog is to post it on my own facebook page and my own personal profile. I don’t have the confidence to go beyond that. I tried to set up a twitter, but it wanted a phone number and I got scared and gave up. Even setting up this blog was a challenge sufficient that my husband had to sit with me and guide me through every step.
But I did manage to start this blog, and started to heal the damage done by the assessment. I was surprised out of my mind when people believed me – the evidence throughout my life being that they generally didn’t. And now this blog has become partly about my being autistic, and partly about the difficulty of it being recognised officially.
As I’ve calmed down and started to review what happened at the assessment from a safer distance, I’ve realised how inadequate the system for diagnosing autistic adults is. I’m luckier than many – in some parts of the country there is no NHS provision for diagnosis at all. If I was on the other side of the Atlantic then I’d have to pay a significant amount money in order to obtain a diagnosis, because, from what I can gather, such things are not covered by the health insurance systems over there. What I have is inadequate, but it does at least exist. There is still the possibility that someone might, one day, help me, although I am now much less hopeful and much more realistic that I was a month ago.
I still don’t know why medical professionals are so unable or unwilling to see autism in adults or to recognise it when presented with the evidence. I have, as I’ve said before, spent nearly two decades in the mental health system, and nobody has picked up on it. Even when I’m sitting in front of someone who is supposed to be an expert, it doesn’t happen. Is there some sort of module on “autism blindness” at medical school? I just don’t get it. Are they still stuck in the olden days when autism was considered to be a condition confined to non-verbal small boys with learning difficulties or savants who can tell you what day of the week it was on 27th March 1572? I don’t know. I don’t have any answers.
I’ve also thought long and hard about the surroundings in the room. I know that meltdowns are not on the list of diagnostic criteria for autism. I know that. BUT, anyone, surely, who has had anything to do with autism knows that, whether there is a line in a clinical manual or not, meltdowns happen, and that they can be violent. And, furthermore, meltdowns are more likely to happen in strange places, under pressure, while being forced to talk about things that are difficult and stressful, and being asked to perform tasks that are uncomfortable.
Can the NHS really not afford to sit a potentially autistic and possibly distressed person on a soft sofa? Somewhere they can bury their head, and safely bash themselves to relieve the distress without ending up bruised as I did. I thought, only half jokingly, afterwards that maybe I should send them a link to the IKEA website (my budget sofa is very safe when I meltdown at home), or if that was too much, then maybe they could find something on Freecycle?
Yes, I am being a bit facetious here, but not completely. I’m really serious that people should be protected. I know about budget constraints and different departments and so on, but I can’t help remembering the day I spent assisting a friend who’d recently had a cataract operation at the eye clinic up the road. Matching clean furniture, thousands of pounds worth of equipment, a whole team of specialists who clearly knew what they were doing.
This, again, is the tip of the iceberg of my thoughts about the way that those of us who are mentally ill or neurodiverse or both are treated. I live in a reasonably affluent area in the south of England – I shudder to think what it might be like elsewhere. I remember the poster that says that 91% of people would recommend psychological services to their friends and family – I’d struggle to send my worst enemy there on the showing of my experience so far. The administrator / receptionist who made us a cup of tea was the only shining light in a very dark experience.
In more philosophical moments I do wonder whether the woman, who had been called in to substitute for someone who was off sick, was simply out of her depth, although her assertion at the beginning of the interview that she was part of the autism diagnostic team at the hospital should really suggest otherwise. I’m still reeling from her apparent lack of knowledge of masking and scripting, her reaction to my meltdown, and the fact that she didn’t know about autistic people and clock faces to the extent that she started exploring the idea that I had neurological damage from some sort of brain injury. Again, I am baffled.
I’ve also tried to think about how to describe just why not receiving a diagnosis that day was so devastating for me. I know that many people will not understand, but for me it felt like I’d showed up for my wedding and been jilted at the altar, arrived at the examination room to sit my final exams and discovered my professor had forgotten to put my name on the entry list, gone to the funeral of a family member and discovered it was a different body in the coffin, and such similar scenarios, all rolled in to one. Whether anybody understands why I feel like this or not, or whether they think I’m being overdramatic, the fact remains that this IS how I feel about it. And that was why being disbelieved in that way was so catastrophic.
I am, now, much less confident that I will ever be diagnosed, but I will keep trying, and we will explore as many avenues as we can find with whatever energy we have at our disposal (which, currently, is not very much). I certainly now believe that unless this person in January is significantly better than the previous one, that it will be a fight, an uphill struggle, and it might take a long time. Maybe the internet will, as usual, be my refuge, and by writing this I might raise awareness of just how difficult it is for “complicated intelligent women” to have their difficulties recognized.
I do not want to go back to the place. I do not want to encounter that woman again, even with her colleague there too. I am frightened. I am traumatized. I seriously doubt I will be believed. I am looking upon it as a difficult and stressful ordeal. But I will go, because although I have very little confidence, I do have masses of willpower (that’s the upside of living as an undiagnosed autistic for more than 4 decades – although your mental health gets totally fucked up and your life falls to pieces, if you manage not to top yourself in the meantime you can end up with bollocks of steel, and mine are, once I’ve recovered from the immediate meltdown and my autistic brain’s strong protest about the change of plan, pretty tough).
I also want a diagnosis. I want to “do this properly”. It is very very important to me. I will try to explain why as soon as I can, but it’s a very strong incentive to keep pursuing the medics and to keep trying to persuade them to take me seriously.