The main reason I started this blog was as a place to talk about autism and somewhere to vent when I’d had a bad day. But so far I haven’t spoken about it at all, I suppose I wanted to make sure I had the time to sit down and write about it properly. So here we go…
Since Max was around 18 months/2 years old I started to notice differences between him and other toddlers. It was just little things like his clumsiness, his endless amounts of energy and his obsessive behaviour with things like plug sockets, washing machines and hoovers.
By the time he reached 3 I was convinced he had an Austism Spectrum Disorder (ASD), but it wasn’t until about a year ago that people finally started to listen to me. I had previously taken him to see doctors, health visitors and had spoken to nursery staff. All I even got was “he’s just a typical little boy” or “it’s normal toddler behaviour”. A health visitor actually once told me that he couldn’t be autistic because he was making eye contact and hadn’t rushed straight over to play with the plug sockets and wires!
His quirks seemed even more obvious as Evie started to get older, she is so different to him. Don’t get me wrong, she can be hard work at times but it isn’t a patch on how Max was and still is.
When he started preschool they slowly started to pick up on his problems and eventually they got somebody in to observe him. He was observed a few times at preschool and then at home before we were told that they had seen enough to refer him for an assessment for autism. Finally someone believed me! I wasn’t going mad. It wasn’t just that I couldn’t cope with him. I felt relieved mostly, but also sad that it probably wasn’t something he was going to just grow out of.
The referral was done in July last year and we’ve only just this week had a letter through with a date for his assessment. It’s on the 15th of February and I actually cannot wait to get it over and done with, this has been hanging over us for such a long time now.
We’ve been told to expect the assessment to last 1.5 to 2 hours and Max will be seen by a range of people including a speech and language therapist, a psychologist and a paediatrician. We will also be interviewed about his early developmental history and our current concerns.
I have been asked by a couple of people why we want a diagnosis but it seems like a silly question to me. If it means he gets the help he needs and we get advice on how to deal with him, why on earth wouldn’t we want a diagnosis? This isn’t about labelling him.
We have never mentioned the word autism to Max and I’m not sure when or if we ever will. I certainly don’t want him to think he’s different to other children. So I’m not sure how I’ll explain the appointment to him, maybe I’ll just say that the doctors are just checking to see how clever he is?
I don’t know for certain if we’ll come out of this appointment with a proper diagnosis, he may need to go back for further testing. But either way, there is no doubt in our minds that he has ASD.
Some days I absolutely hate autism. But on those bad days I have to try and remember that he is exactly how he’s supposed to be and without autism he simply wouldn’t be Max, his quirks make him who he is.
“Autism is part of who I am” Temple Grandin.
If you have any experience of autism and the assessment process then please let me know. Any advice would be greatly appreciated.
Thanks for reading.