Not Autistic Everywhere!

So, we are off to see a Paediatrician on Friday. It’s a big day for us because despite J having an official diagnosis for 18 months, it was a diagnosis given to us in Australia. We brought back with us every piece of paperwork we had, in fact one piece of our cabin luggage was just J’s medical notes, OT Reports and even school reports, including a copy of their verification of diagnosis of ASD. Despite all of this we’ve been told that his Australian diagnosis isn’t valid in the UK and “just because he was diagnosed over there doesn’t mean that he will get the same diagnosis over here”, yeah ‘cus he suddenly became NT on his journey back to the UK!!!

I’m genuinely concerned about our appointment. You see although we are supposed to be seeing a different specialist, we have to attend Dr W’s clinic. Dr W being the “specialist” that told us there was nothing wrong with J’s behaviour and that it was all me because I was depressed! Do you see why I’m concerned? Surely if he has been diagnosed with Aspergers Syndrome / High Functioning Autism in one country, it should be a valid diagnosis in another country. But what happens if the Paediatrician we see doesn’t give us that all important UK diagnosis? Where do we go from there?

J has only been attending school here for 2 weeks and that’s only been for 10 hrs a week, having a TA (whom he likes!) with him at all times and already he’s not coping. Already they’re (the school) are missing those all important anxiety signs, the biting and sucking of his mouth and fingers, the funny noises he makes with his mouth, picking the skin off his fingers and so on. All very subtle signs but as he won’t ask for help or admit that he can’t do something or isn’t happy to do something, these are very important signs that need to be looked for. Instead he’s building his stress levels whilst at school and seen to be “coping” but then letting loose at home……….And I mean letting loose. This week I’ve once again had to seek medical attention due to an injury that J has caused me mid meltdown. I don’t know how we’re all going to cope next term when he has to start attending more hours.

At the moment we’re told because he isn’t displaying the negative behaviour at school they can’t see the need for an aide, without our official UK diagnosis he doesn’t have any hope at all of getting any help. Again as I said in my last post I understand where the school are coming from, if they don’t see it, it’s hard to believe, I get it, really I do. However I wonder if part of the problem is also their lack of understanding of Asperger’s and if maybe that’s why they’re missing the tell-tale signs that his anxiety levels are building. I’ve heard so many stories similar to ours of Aspie kids wearing a mask whilst at school, acting, “holding it together”, “coping” and then releasing when they get home from school because they’re just so exhausted and stressed. And Aspie kids, (older than J), who have missed vital parts of lessons because they have are so exhausted just trying to hold it together that they can’t possibly even attempt to take in what is being taught, it’s just too much for them. And I KNOW this is the struggle that J is dealing with.

We have a school not too far from us that specializes in all ASDs, which would be great for J. They’re specially trained professionals who would know what signs to look for, who would know how to cater for J so that he would have a better opportunity to reach his full potential, (he’s a smart kid…..really smart), but without that all important UK diagnosis he wouldn’t be able to attend.

So we’re hoping that all of our paperwork will be enough, of course the icing on the cake would be if J is having a bad day because then the Paediatrician will really get to see him full on………………Let’s hope so, without the right help and support I wonder how bad his meltdowns will get when he’s a little older and bigger and how long he’ll be able to wear the mask for before it slips. When that happens, without our UK diagnosis he’ll just be a naughty kid, whose parenting should be better.

Surely if we were given the diagnosis in Australia, we’ll get the same diagnosis here?

 

About these ads