Tomorrow is World Autism Day. Last week my son’s teachers suggested that it might be a good idea to have him assessed to see if he has an Autistic Spectrum Disorder (ASD), so I’ve been doing a lot of reading around the subject on the internet in the past few days.
Today I went to see our GP as the teachers recommended next step was for our GP to refer him for an assesment. Our GP agreed that he sounded like he might have traits of someone with ASD but that he thought that the next step was for his school to refer him to an educational psycologist. Tomorrow I have an appointment with one of his teachers to let her know this and discuss next steps. (I have a plan by the way, it involves getting both the school and the GP to refer him as both referels will seemingly take an unspecified “long time” so they might as well run in parallel and whilst we’re waiting, find out which of any strategies that would be recommended if he should get a diagnoses (with a little help from the National Autistic Society) could be implemented straight away and implementing them to see if it helps. Now, to see if I can get all the professionals involved to play ball….)
Somehow I feel like I am at the start of a long and frustrating journey.
I’m torn about what this has to do with me and my anxiety. On one level, nothing at all, my anxiety is internal. On the other hand, as being a full time parent is my job, that job description might be about to change, I’m certainly entering a period of uncertainty in the workplace, and stress in the workplace can trigger, well stress, and anxiety (ask me how I know, it’s one of the reasons I’m now a full time parent). And in another way, I feel relief that someone else, two someone elses who are paid professionals none the less (at least one of whom has experience with young people with Aspergers), find his behavouir hard enough to deal with at times that they would consider saying such a thing to me. Which has a double edged effect on my Mother Guilt, both reducing it (maybe it’s not always my fault that I feel quite so frazzled sometimes) and increasing it (how can I be relieved that my son might have Aspergers/ASD).
In a way it’s a good thing. It’s something I have to focus on and do stuff about (however frustratingly slowly), I may be a bit unorganised at times, but generally I’m a good parent, and getting involved in parenting is often a good thing that distracts me by involving me and draws me out of my anxiety. In another way, it’s another thing to worry about, to keep track of, to plan for, and I’ve been really bad at keeping track of things recently, which tends to then make me feel guilty and anxious and ignore them until they blow up into actual panic inducing problems.
What ever it turns out to be, for all of us, it’s definitely going to feature heavily in my thoughts for a while, so I better start getting used to it.
Today I spent about 25 minutes on hold to the National Autistic Society. They were too busy to speak to me. (This is not a complaint, they’re a charity, it’s world autism day, they’re going to be busy and it’s a free service). 25 mins of hold music, interrupted by ring tone every couple of mins which raised my anxiety as I thought I was going to have to speak to someone but then I just got a message saying they’re busy and back to the hold music. I was quite relieved when I ran out of time as it was making me feel rubbish. So I emailed them as suggested.
Then I went to see one of his teachers who was surprised at what the gp had said. Her understanding was it was much better to go through him. She’ll talk to the SENCO (special needs coordinator) when she’s back from bereavement leave, so probably after the Easter holidays She’s quite happy to fill in a form for a referrel but this won’t get us anywhere before he changes schools. She’d love to get some tips on strategies to try with him but seemed to think that this wouldn’t happen until he had a diagnosis and she’s never worked with a child on the autistic spectrum before.
Then I picked up the automatic reply from the National Autistic Society. They expect to take up to 6 weeks to reply to my email.
Oh and I managed to tell my mum and she’s not convinced. Then she saw a documentary on autism last night and rang me afterwards to tell me about the bit where they said many people have autistic spectrum traits but that doesn’t mean they have ASD. I.e. she is right and I am wrong.
Bangs head on wall. Meanwhile another frustrated tantrum from a boy who’s clearly finding things very difficult at times.