There was an original Formageddon (my term for the feeling of gradual apocalypse in my head when faced with questionnaires and forms to complete) back in October 2016 when I was referred for the first autism assessment. But I wasn’t blogging back then, not confident enough to be publicly autistic. Too frightened, too afraid to even mention it without a formal diagnosis. Maybe I’ll write the entire “Formageddon” experience up properly sometime, but, for now, I’m about to plunge into Formageddon The Sequel.
For the original Formageddon I spent a huge amount of time working on something called the RAADS-R (Ritvo Autism Asperger Diagnostic Scale-Revised) and my husband interviewed my mother by phone in order to complete an SCQ (Social Communication Questionnaire). The hospital have never given me scores for these forms, neither were they even mentioned at the assessment, which, after the amount of work I spent completing them and explaining what the real truth was where the questions were badly phrased or imprecise or simply nonsensical, I found rather dismaying.
And now, with the second referral to the second place, I have received a whole load more forms to do. Two pages of “Developmental Questions” that mean we will need to call my mother again (some I know she can’t answer, because we’ve already asked and she doesn’t remember), one called simply the AQ (Autism-spectrum Quotient) which I recognise as the “internet quiz” mentioned in The Discovery, and one called The Cambridge Behaviour Scale, which has 60 questions, many of which will require extra explanation like the RAADS-R did.
I am not filled with joy at the thought of this task. I am exhausted by all this, low on energy, almost beginning to suffer from a sort of “autism fatigue” (I have been obsessively learning everything I can about autism for 5 months now) and I deeply hate dredging up stuff about my childhood – a period of time I’d hoped I’d closed the door on forever when I grew up and left school and home.
I’m also trying to use energy to salvage what I can of my present life. I’m still vaguely trying to save my Open University maths study, which is rapidly falling apart. I want to go running, play my viola, spend time with the animals. Almost anything other than go through another load of Kafkaesque questions that I already know will annoy the hell out of me and trigger all sorts of stuff I really don’t want triggered. And what I desperately need to do, more than anything, is to rest and recuperate, not sit at the computer making myself feel ill.
But the only way I will get another assessment, and maybe a diagnosis, and any closure to this whole diagnostic nightmare, is to go through these damn things, and is to sit, once more, anxious and frustrated, trying to go through this whole process all over again. As seems to be the way, in order to get help I have to make myself feel bad.
Doing it once was stressful enough, doing it again feels even more so, especially when the result might then be another really stressful difficult assessment with an inconclusive ending that leaves me feeling invalidated and suicidal.
This is taking every scrap of my willpower. I feel weary.