The chair I was sitting on was one of those with a fabric seat and back held together by a wooden frame. In my attempt to escape from the room coming towards me, and unable to perceive that there even existed in that room, a door, from which I might have escaped, I pushed the chair hard back against the wall. I desperately wanted to bang my head hard against the wall, because that was the only way I could stop the pain, but that tiny bit of my brain that was still working knew that it wasn’t the cushion I have at home. It wasn’t my safe bed. It was an alien hostile place with a shouty woman who didn’t believe me and thought I was a fake.
My upper right arm took the most punishment. From the wooden upright of the chair, as I hit myself over and over again against the hard wood. There was no soft safe place to retreat to.
My husband, himself still in shock and drained from the previous day trying to sort the appointment out, could only tell the woman that she shouldn’t try to stop me. He knows this because he knows that I am strong. Very strong. I’m a 5’9 person who weighs over 13 stone, can lift heavy weights and run long distances. He can restrain me, has done when necessary, and has occasionally sustained injuries doing so, but most people can’t. She certainly couldn’t have. We have since discussed how to deal with this situation should it arise again, and prepared ourselves that he will open the door and get me out, away from the trigger, away from the medics who seem still to be unable to tell me that I am autistic and still seem to be hell bent on inflicting yet more trauma onto me. We will not make the mistake of feeling that asking for help means we will get it, or that these people are on our side or understand our needs.
Perversely, the woman also discussed trauma. The words that stuck in my head were “you seem to have a lot of trauma” (no shit, I’ve been an undiagnosed autistic for 45 years, trying to survive in a hostile world and being told constantly that I’m so intelligent that I should be able to cope and I should just work harder), “intelligent women are a problem” (thanks for that, I’m so glad that I’m “a problem” – I’ll come back in the next life as a stupid man if that would help), and “very complicated” (well yes, that tends to be the case when you have bipolar disorder, severe anxiety, undiagnosed autism, probably sensory processing disorder as a subset of the autism, and some measure of trauma (see above) to add into the mix – if I was simple I wouldn’t be sitting in a hospital in front of a mental health professional asking for help, having spent months filling in forms and compiling information).
I turned back towards the table, feeling somewhat numb. The woman then said we could do the ADOS. The ADOS (Autism Diagnostic Observation Schedule) is a series of exercises used to assess whether someone is autistic. She asked if I was up to doing the exercises and said she wasn’t completely ruling out that I might possibly be “somewhere on the spectrum” or have a few traits so I might as well jump through the hoops so that when I came back in January to see, presumably, someone who had less of a problem with “complicated intelligent women with trauma”, I had at least completed the exercises. Having got up at daft o’clock in the morning and gone through all the stress I was keen to do as much as I could, so said that yes, of course I’d do the ADOS exercises. I also wondered if, at the end of a three hour assessment, when she’d got to know me a bit better and seen beyond the obviously scripted masking that characterized the 15 minutes preceding the meltdown, she’d change her mind and give me a diagnosis after all.
Then she produced a book. I won’t say too much about it here, in case other people going for diagnosis are reading and want to go into their own assessments on their own terms without my having influenced the way they behave. She told me it was a “weird book”, and, by this time, despite having told me how intelligent I was, had started talking to me like I was around five years old. My husband wondered whether the meltdown had disturbed her or something. We don’t know. I could hardly imagine that someone who was an autism specialist hadn’t seen people in a state of full-blown meltdown before.
The book was basically a book full of pictures of frogs and white houses. She asked me to describe each page of the book. I did. Turning each page and describing the frogs, the houses, the trees, a few people, and so on. It seemed like a terribly dull exercise, describing a whole load of random pictures of frogs, which is what the book basically was. It was one of those large paperbacks with few pages, such as you find in primary school libraries – maybe that was what had sent this woman into a sort of “primary school teacher” voice. It felt rather pointless and boring to describe a whole load of pictures that anyone who had reasonable eyesight could see perfectly well for themselves, and it made me feel rather weary. At the end of the exercise she asked me what I thought of the book. I couldn’t think of anything to say, so I just told her that it was indeed “weird” as she had already stated.
When I had finished the book the assessor started asking me about clocks. She had picked up from my description of the book that I couldn’t read the time from clock faces with hands. I have never been able to read the time from clock faces with hands. I told her this. I even showed her my digital watch and explained that I have digital clocks for the time, and hand clocks were something I considered purely ornamental. I can eventually tell you what the time is from a hand clock, but I have to go through the same process I did when I first learnt to tell the time at primary school – I say, in my head, every time, that the big hand is pointing here, and the little one pointing here, and I count up the fives, and add them up, and eventually work out what the time is. I’m quite fast at it when I can be bothered to make the effort, but, to be honest, most of the time it’s not worth it – get a digital watch, life is too short to be faffing about with all that counting.
The clock thing seemed to worry her. She started asking if I’d ever had neurological problems. Had I had a head injury? A bang on the head? Had I been investigated for neurological disability? Wearily I said that no, I’d never had a head injury, no, I’d never had any neurological investigations, no, I’d never had any significant bang on the head. To be honest, I couldn’t really see where this line of questioning was going, and I was starting to worry that I’d gone to the hospital for an autism assessment and I was going to end up either sectioned in a straitjacket following my meltdown, or being sent for a brain scan because she’d decided that I had some sort of traumatic brain injury. This was rapidly turning bad again.
And then, having said she’d do the ADOS, having told me that we’d do all the tests. She then turned out to have lied to me AGAIN. She stopped the ADOS. She said she wasn’t going to do any more and that the assessment was over. I still don’t know why. I had run out of energy to argue by that stage. Making words was becoming increasingly difficult and I just gave up.
My husband and I sat in stunned silence while she left the room, then came back and gave us a time and date to show up in January. My husband said he was concerned about me and asked about support. We were told that there was nothing available, and that I could make an appointment with my GP and then get a referral back to the CMHT (the Community Mental Health Team) in the New Year or he could take me to A&E (presumably by calling an ambulance). She didn’t even acknowledge his concerns about our journey home (I had to drive us) or how we would cope over the next few days. She then departed.
I cried on his shoulders and we made our way out of the building, past the waiting room with the cotton reels and mismatched chairs, and past the plant growing into the building through the wall. Out into the cold. Back to where the car was parked.
I looked at my watch. It was just before 9 in the morning. The whole thing had taken less than an hour. For a three hour appointment. I felt abandoned. Ignored. Desolate. Nobody even checked we were OK before we left.
On the bright side, we’d been expecting to pay for up to five hours’ car parking. In the end we paid for just two.