It is nearly 2 1/2 years since a teacher first mentioned to me that they thought my son might have Asperger’s Syndrome and in just under 2 weeks we finally have the assessment coming up.
I am feeling so worried about this at the moment.
On one level I know that a diagnosis won’t change anything, he is who he is regardless of what they say. I know he thinks differently from other 9 year olds and that has amazing benefits for him as well as causing him frustrations and anxiety. I don’t want to change him. I do want to help him. I want to help him, who wants so desperately to understand everything in such detail, to understand why he feels different and why he finds some things so tricky. I want to be able to explain to his grandfather that he’s not naughty. I want to know what to put on a form when I sign him up for an activity that I wont be there for, that will help others who are going to be looking after him understand him. And I want a piece of paper I can take with me when I’m investigating secondary schools and to wave about when I talk to the SENCO/teachers once he’s there (because I have a lot of worries about how he’s going to cope there).
I know he has autistic traits, because we wouldn’t have managed to get to this point in the assessment process if he didn’t.
I know that he’s not severely autistic.
It seems to me that there is a degree of subjective opinion when an Autistic Spectrum Condition is diagnosed. There is no yes/no blood test or similar. To some extent it’s a judgement call.
And I worry that he sits somewhere on the border between diagnosis and not and that he won’t tick enough boxes to warrant a diagnosis.
The appointment is for an hour. Someone will be with him for an hour whilst someone else talks to us. I don’t know if that is the whole process or if more will follow.
It seems a ridiculously small amount of time to make a diagnosis.
I am worried that I will forget to say something or won’t phrase something in the right way and that my slip up will mean he doesn’t get enough points for a diagnosis.
And at the same time I feel guilty that I might be exaggerating how he is in order to label him, so that I feel less bad when I find him hard to cope with, as then it’s his fault not mine.
I have absolutely no idea how to prepare for this process. I have no idea what form it will take. I have tried writing notes and they come out pages long, far too long maybe for an hour conversation.
And I have no idea how to tell him about the appointment. I know he won’t want to go. We went to see the Community Pediatrician recently and he found that stressful. I need to give him enough warning (as he doesn’t cope well with surprises) but not too much as I don’t want to cause him lots of worry.
Basically I’m just really worried and nervous right now, I have spent the last two and a half years being impatient for this assessment to happen and now we’re nearly there I don’t want the day to come because I’m worried about the outcome.