Published on 12, July, 2020
Hello
I have a son in his second year at a state primary school. He's doing ok at school, but does have delayed language development for his age (although he is bilingual), difficulties with social interactions and does have difficulties in following instructions in the classroom and concentrating. He has been lucky to have had quite a lot of attention from the classroom assistant this year, which has helped him a lot, but next year there will be no classroom assistant - just one teacher between 30 children.
The school have referred him to our local CAMHS team, as they suspect that he is autistic - and I agree that he almost certainty is (for a variety of reasons, not just the issues above). We had an initial discussion with CAMHS about him, and based on the information provided to them by us and his school (including report from an EP) they will be referring him for a formal assessment - which their expectation is, will result in him being diagnosed with ASD. They also said that their expectation would be that if diagnosed, whilst he may qualify for some, very limited, extra help at school, it is unlikely that he would, for example, get much (if any) additional support from a teaching assistant (which in my view is what he would most benefit from).
We seem to be on a bit of a conveyor belt towards formal diagnosis, but it is very difficult to get any answers or information on what the drawbacks of that may be, and what other options are available to us (e.g. to what extent we are able to get him extra support in a state school by paying for extra services privately, or whether it would be better to get him diagnosed privately). I am concerned in particular about what goes on his medical records and what he may have to disclose in later life as a result, for example;
But the main concern is that he is a citizen of a foreign country and may be forced to do military service there when he is an adult - at which point that country would force him to consent to the full disclosure of his UK medical records. As it is a country where attitudes to autism are very different from here, I have real concerns about what might happen to him if they know about his ASD.
So the bottom line is, I would prefer not to have a formal diagnosis on his medical records (at least until he is old enough to make that decision for himself); but equally I want to make sure he is getting the support he needs at school. I've discussed these concerns with CAMHS, but it has so far been really difficult to get any clear answers on what are options are and what control we have over who is informed of the diagnosis and where that gets recorded. For example, whether it is possible that his GP is not informed (so it doesn't go on his GP medical records)?
We will pay privately for extra support if that is needed, but I'm not sure if that is possible while he is in a state school? The situation that I can see unfolding is that he gets diagnosed, but only very limited support is offered by the council.
Thanks for reading - any advice would be very welcome!
Hi there,
I can see your point. My concern, though, is that if he's struggling in the ways you say - and he sounds very much like I was at primary school - if he doesn't have a diagnosis, he can't get access to whatever help and support might be available to him.
I didn't get my diagnosis until 3 years ago, aged 56. It was overwhelmingly positive for me to get it. Validation, at last! On the downside, though - if I'd had it when I was much younger (and all the pointers were there, but it simply wasn't known about so much then), then life might have turned out much more differently. Instead of having an unutterably miserable time throughout my school days - bullying, lack of focus, etc - I just might have fared a little better. Generally, life's been far from easy. Without my diagnosis to explain problems I had throughout my teens and twenties, I struggled to understand what on earth was wrong with me. Why was I behind everyone else educationally? Why couldn't I make friends? Why was I dogged by anxiety? And so on and so on. From my early 30s onwards, I've been plagued by mental health problems because of all of these things. The arbitrary 'limits' a diagnosis might have placed on my life would have been far outweighed, in my opinion, by the benefits of knowing certain things, perhaps being able to get help in the workplace (instead of being marked down as 'fussy' or 'over-sensitive', etc.) Certainly, I think, my progress wouldn't have been so limited in other ways, and I wouldn't have had to struggle to make up for things on my own account - going on to university late, missing out on opportunities, etc.
You clearly have his best interests at heart. But I'd ask you to consider things very carefully about where his best interests might truly lie. That's all I can really say. Except to give you an example of an ex-colleague of mine at work. He was diagnosed as a child. But his parents decided not to tell him because they didn't want him to grow up feeling different. He didn't find out until he was in his 20s. He said it made him hugely resentful towards them. 'If only they'd thought about the damage it might have caused me - and did.'
Hopefully, you'll get some good input from others on the issue.
All the best,
Tom
Hi Tom
Thanks very much for your reply. I'm very pleased to hear that your diagnosis had such a positive impact.
The kind of experience that you describe at school is definitely something that we are worried about for our son. I completely agree with you, explaining things to him, right from the start, has to be the right approach. I think our choice is really between getting a diagnosis done privately, or sticking with CAMHS.
Thanks
Jim