I re-read my assessment report today, after leaving it for six months. I still cry at some of it. It’s hard to read a sentence like “You offered limited indication of a sense of responsibility for your own actions that would be appropriate to your cognitive level and chronological age” without wanting to argue that it’s completely wrong and actually you’re a nice person who cares really.
That sentence is taken out of context, but it still hurts. I don’t like it.
The report from my assessment is 35 pages long. It lists all the different tests and measures that were used to back up my diagnosis, the evidence that they took from various places to back up my diagnosis, my results on various assessments, and a list of ‘habilitations’.
I love the word habilitation. I’d not heard it before the feedback meeting on my report, but apparently it comes from Hans Asperger. Where someone who has lost a skill needs rehabilitation to get it back (if possible), if you’ve never had a skill in the first place then it’s a habilitation.
Mine includes “difficulty with planning and problem solving in everyday situations if there is too much choice to handle”, and “managing in a new or strange situation”. The habilitations are common sense, and at this point in my life I know them. But there’s a difference between knowing something in theory and being able to put it into practice. I’m great at theory. Written exams are a doddle. I’ve failed the practical driving test ten times, after almost-perfect scores at the theory.
That’s just one example. The rest of my life is littered with them. I could probably write a book on organising and decluttering. You only need to look at my Instagram feed to know what a mess my house is in, and I have spent hundreds (thousands) of hours on it.
Theory and practice. In my life, there is a huge gulf between them.
I had to leave re-reading the report for six months because it’s been such a stressful time that I couldn’t cope with reading it again. I now mean to read it more thoroughly, and take more note of the habiliations and recommendations. There are so many things that I’ve been told I should do with my autism diagnosis.
I should apply for PIP. I should apply for a free bus pass.
Autism is a disability. I am autistic. I am disabled.
I find it difficult to relate my concept of me to my concept of a disability. But I normalise my life. All the accommodations and decisions I make so that I don’t break down do not mean that I’m functioning well. They mean that I have a lot of controls around me to get through each day.
I still don’t feel that I deserve any kind of disability benefit or freebies just because the world is built for people whose brain functions in a different way. Besides, look how far I got in life (before all the controls in the world wouldn’t work because pressure and stresses build until explosion is inevitable.)
And of course I’m not really autistic. Not like other autistics. Not really.
But when I feel like that I can look at that huge list of tests and measurements, and all the evidence in the report that says that I am autistic. Not Asperger’s. Autistic.
Maybe it’s time I stopped trying not to be.