Should I get my son diagnosed with ASD

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;

  • if he wants to go and live abroad and needs to apply for a visa
  • if he applies for certain jobs
  • if he applies for certain types of insurance

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!

Parents
  • NAS, I think it is much better to sort out some help now, rather than put it off indefinitely because it can be very difficult to obtain a diagnosis later in life than as a child. To try to hide your son's true problems would be a great disservice to him in the long run and would probably result in greater suffering for him over time. It is better to understand what one's true nature is because trying to 'fit in' to a world that is not really designed for autistic people can only lead to heartache and sadness. By knowing yourself you are in a much better position to make decisions that will be beneficial to you, not what others expect of you and if this means his medical records are looked at then at least other people will know what the situation is and maybe not expect things that your son is not equipped to deal with. What kind of a country treats people like that anyway? I'm quite shocked at this. 

  • Hi lostmyway

    Thanks for taking the time to reply. Yes, I agree, I'm very much of the view that it is better to be open about it - it's only the specific issue of medical records that is the real concern, due to him potentially having to consent to their disclosure in the future. Hopefully, our concerns are overblown, but it is a country with a very poor human rights record.

    As I mentioned in my reply to Tom, getting a diagnosis done privately is our other option. The difficulty we have is in knowing the pros and cons of each, and if it is possible to still get him the help he needs at school (even if we have to pay privately), based on a diagnosis done outside the NHS. And if we stay within the NHS, what control we have over what does on his medical records.

    At the moment, it is just really difficult to get clear answers on those things either from his school or CAMHS. 

    Thanks

    Jim

Reply
  • Hi lostmyway

    Thanks for taking the time to reply. Yes, I agree, I'm very much of the view that it is better to be open about it - it's only the specific issue of medical records that is the real concern, due to him potentially having to consent to their disclosure in the future. Hopefully, our concerns are overblown, but it is a country with a very poor human rights record.

    As I mentioned in my reply to Tom, getting a diagnosis done privately is our other option. The difficulty we have is in knowing the pros and cons of each, and if it is possible to still get him the help he needs at school (even if we have to pay privately), based on a diagnosis done outside the NHS. And if we stay within the NHS, what control we have over what does on his medical records.

    At the moment, it is just really difficult to get clear answers on those things either from his school or CAMHS. 

    Thanks

    Jim

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