Child Protection for the Autistic Child - A Resource
Meaning - "be aware of through observation, inquiry, or information."
When my son was finally given a diagnosis he resisted it all the way. I believed he needed a formal diagnosis because the process of figuring out the nature of his difficulties had been horrendous and not something I ever wanted him to have to go through again at any point in his life. I also wanted him to have a chance to know who he is, why he struggled and that he was not alone in this. He is academically very smart, much more so than I am and yet he did’ent want to know.
The verbal diagnosis came first. “He is on the autistic spectrum’” It was a team conclusion made by a number of specialists without the benefit of a checklist and associated 'scores'. We asked for a written confirmation of diagnosis and for that one of the accepted diagnostic tools had to be used. The tools used to diagnose adults and children are different, in essence, adult diagnostic tools rely on participation whilst tools for children rely more on observation. He was by then a young adult who would not participate.
In the end the tool selected was one for young children based in large part on a checklist interview with parents. It felt incredibly disloyal to him to be systematically interviewed about his differences/deficits but I believed it was my job as a parent to ensure I got him the protection of a diagnosis that signposted him and others with responsibilities to him, to the right understanding and targeted support. For him, I now know now, he believed I was signposting him to a lifetime of limitation, stigma and prejudice – all of which he rejected. I believed there would be short term losses but these should be acceptable if they could lead to long term wins. As it turned out diagnosis did lead to social care support that would not have been available to him otherwise. I had then no real idea of how high the price would be for forcing the issue and the comprehensive nature of the losses.
When the report confirming his diagnosis came in the post, it listed all the answers we had given in our interview. It was not a draft report for comment, it was a final report and a copy had already been passed to my son. I had not thought about this beforehand and if I had I would have been much more careful about how I phrased responses to questions. The report contained a few errors of fact, not many, but we had no way of correcting them and errors in fact matter massively to our son. The report also contained the line ‘His mother has known that he is autistic for a long time’. A question about this had never been asked directly nor had I said anything along these lines – I just had near perfect recall of incidents that raised concerns in my own mind at the time they happened that his development was off-track. It felt tremendously unfair to read this line without any discussion about the potential harm it could cause to already very difficult relationships between my son and I.
Unnamed Difference I’d known that he was very different in many ways but believed it was my job as a parent to help him become an adult who could deal with the ‘light and shade’ in himself in the same way as every adult does rather than 'medicalising' him unnecessarily. I had been adapting, explaining, observing and waiting for a long time and ‘down-playing’ my worries. Nobody else seemed to have them as he was academically a high achiever and generally little trouble in school. For a long time I'd been relatively confident he and we were coping with his unnamed difference, until everything comprehensively fell apart. My confidence proved to be misplaced and based on ignorance and naive optimism.
Is that knowing? If so, it was of the ‘All will become clear in the fullness of time’ kind of knowing and the ‘Don’t go looking for trouble, If it is coming your way, it will find you’ kind of knowing. It was knowing there was a problem, but not understanding whether it was a big or a little problem, its nature or where to start looking for some answers but believing somehow we would deal with things as they arose if it becomes clear we had to. Maybe this kind of half-knowing is what many of us do in various contexts to get us through the day, deal with (not solve) the difficult problems we face. What life has taught me though is that when the trouble that is coming your way does find you, you may regret that you did not choose to look earlier. I know I do.