It should have been the biggest day of my life. I had done the research, I’d been right through my life, I’d discussed with friends, both autistic and not, and I’d examined how I fell into each of the criteria for autism. I knew I fulfilled them all. It should have been the day that I heard a clinician tell me that yes, I did indeed have autism spectrum disorder, and the day that I finally felt believed and validated and listened to. We had asked so many times and been told that yes, we would almost certainly know on the day, and the only reason a diagnosis might be delayed would be if they needed more information. We had sent over 60 pages of information, covering my entire life, demonstrating everything. I could not imagine what further information would be required.
But it was not to be. It didn’t work out like that. The response, as far as I can remember it, was “I can’t diagnose you, come back in January.” And then we were back on our own, unsupported. No diagnosis. No support. The only suggestions given were to make an appointment with my GP or to go to A&E.
With hindsight, alarm bells should have been ringing loud and clear the day before. I was too nervous to sit still for very long and spent a large amount of time pacing round the flat or curled up with my blanket rocking on the sofa. On one of the occasions I did check my messages I found a series of communications from my husband that sent me almost into meltdown. The hospital had called to say that the person who was supposed to be assessing me was off sick and we’d have to rearrange sometime in the New Year. My husband (who also struggles massively with the telephone) had bravely called the hospital and explained that I really was in a terrible state about this and we’d been promised, and that changing plans about something as huge as this was something that made me really really stressed (the sort of stressed where I start talking constantly about taking my own life) and that we’d spent weeks counting down the days, then the hours, then the minutes until this assessment.
So the administrator had fixed someone else to cover for the sick person. We would have to be there at 8.00 rather than 9.30. Was that OK? My husband said that if we had to be there at four in the morning then that was OK. We’d do it. This was something that was going to finally explain decades of a life that had gone wrong over and over and over. I viewed it as the hearing that would finally prove my innocence and release me from the prison of a life that I hated.
And no matter how hard I tried to prepare myself for a negative answer, just in case, I knew, absolutely knew, that autism WAS the explanation for everything that had gone wrong in my life. I’d spent months studying the DSM-5 and the ICD-10 criteria, and I knew I fulfilled them all. I’d scored right at the top of all the questionnaires, submitted pages of evidence going right back to my behaviour as a baby, interrogated my mother until I’d dragged every bit of information she could remember out of her head, and spent hours and hours discussing with a group of close friends who themselves were autistic, had autistic relatives, were not autistic but knew me and my behaviour. The verdict on the self diagnosis was not only that I was autistic, but that I was a very clear cut case.
So, at 4.30 on a very cold November morning we got up, drove to the hospital, parked the car, walked round in circles for over an hour because we were so scared of being late we were really early, and finally made our way into a slightly dilapidated building in the centre of the hospital. Dilapidated to the extent that the plants from outside were actually growing into the building. We sat on the floor in this foyer area trying to thaw out a bit from the freezing walk, and an administrator then arrived and showed us into a small waiting room with eight chairs in – four made of blue patterned cloth, three orangey, and one buff. One of the orangey ones had a grubby smear on the back. The lighting was harsh, even through my sunglasses. My husband and I sat at opposite corners of the room, both stimming wildly, and I observed a yellow and a red cotton reel on the floor under two of the chairs. There was a poster on the wall stating that 91% of people who had used these psychological services would be happy to recommend them to friends and family with similar needs. I was irked that it wasn’t an even number, but thought that the oddness probably meant it was reliable!
The administrator explained that they didn’t normally provide drinks, but since we both looked so freezing she’d make us a cup of tea if we wanted. I sat and sipped my tea, aware that I felt really sick, but also aware that the assessment was three hours long and I didn’t actually want to faint two hours in – I’d been unable to eat breakfast, or very much in the way of food for the previous two days, and I figured that the calories in the milk would be useful.
A woman in leggings and a fancy jumper then arrived and introduced herself as the assessor. She said she had to sort a few bits out and would be with us shortly. We continued to wait, until a few minutes after 8.00, the scheduled start time of the appointment. She then came and collected us and took us to a tiny room with three chairs arranged around a table with a box of tissues on it. We added our tea mugs to the table and sat down where we were told. The assessor then started complaining about the chairs and saying that she wasn’t very comfortable. I wondered if she had the first clue of just how uncomfortable I was, but she didn’t give any indication that she did.
She then gave a short speech. She explained that it was over 90% likely that I would have an answer today, and that it would only be if there was a big problem that I wouldn’t know. Again, I couldn’t see what the problem might be, so I prepared to do whatever I was asked as best I could, give the fullest answers to questions, be myself as much as I knew how, and so on.
She started by asking me how I met my husband.
Easy. I’ve been asked this question hundreds of times. It’s quite a long story, which I won’t type in full here because I don’t have the energy or believe it’s pertinent to the tale I’m currently telling, but, and this is the crucial bit, it’s a story I know well. I have well-defined scripts for it, which I’ve used hundreds of times in hundreds of situations. I can tell the story, especially when I have plenty of words because I’ve spent the last two days alone, hardly talking to anyone, as was the case then. So I told her. A well-rehearsed performance, delivered as slickly as it always is, with dashes of humour thrown in for good measure.
Then she moved on to asking me about my family – brothers, sisters etc. I told her, again, more well-rehearsed stuff. More autobiographical history that I have clear scripts for. I downloaded the information from the relevant branch in my mind, spoke it out as I have done hundreds of times (a bit like some of the blog posts I write here). Information dumping, same old stories I’ve told to dozens of medics trying to get to the bottom of my mental health problems.
Finally, she asked me about my history of breakdowns. Again, stories I’ve told dozens of times to dozens of people. I told her about my breakdowns, about the people I’d asked for help over the years who had told me that I was so intelligent I couldn’t possibly be struggling. I was patient with her when she seemed to be struggling to keep up and write it down fast enough, patiently explained that I’d said September, not December, when she made a mistake. Tried, as I have done for years, to make it easy for her to understand because she clearly wasn’t keeping up, and it was, by now, evident that she hadn’t read the information we’d sent, but, since she’d been brought in at short notice because the other person was off sick I gave her the benefit of the doubt, explaining it again for her, even though I was getting more and more stressed and wondering when she’d stop taking this increasingly tedious history and actually start getting on to asking me about more obviously autistic things.
Then she stopped me.
I can’t remember the exact words, but she basically said that she wasn’t going to be able to give me an autism diagnosis.
My world started to collapse. My husband sat, frozen, shocked. He later told me that he was trying to work out how he would keep me alive because he knew the effect it would have on me.
Why? I asked.
She told me that I was too articulate and that I used hand gestures.
At that point I think I tried to tell her that I’d spent 40 years learning all this stuff to survive. I don’t fully remember what I said, or what her response was, because my head was falling to pieces. I put my head in my hands and muttered something about how much I hated being intelligent, and that if I’d been stupid someone might have taken care of me, looked after me, recognised the hell that my life had been. The connections in my head then disintegrated completely, the walls of the room came towards me, crushing me to death, the lights were turning up brighter and brighter through my closed eyes, the woman continued to talk, louder and louder and louder until I knew she was screaming in my face, and I went into full meltdown…