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!
Regardless of whether your son's ASD diagnosis is via the NHS / GP or privately obtained, any extra help provided for your son at school due to ASD is likely to be in his school records. Local authority involvement in accessing services for your son is also likely to be traceable as are records of benefits that you or he may access due to his ASD diagnosis.
If your country of origin is likely to be intolerant of an ASD diagnosis. there are many ways that they could access or inadvertently come across this information about your son. Especially in this day and age and especially if they have any reason to question things re. your son and feel the need to carry out more extensive checks than just the information disclosed voluntarily.
Re. the expectation on your son to complete military service as a citizen of that country, and taking into account that your son may need to have a record of his ASD in this country in order to obtain the support he requires throughout his school years, would it be a possibility for your son to apply for citizenship of this country? If so, he could safely obtain the help and support he needs without the concern about having to return to his home country and face possible persecution (?). I know that I may be dramatically oversimplifying this process but surely it's something worth considering?
The only other solution I can see is to refuse to have your son assessed for ASD at all and to pay privately for each individual intervention as the need presents itself (such as speech therapy). The problem with this option is that your son (if he does indeed have ASD) is likely to have needs that remain unidentified and unsupported throughout his education (and beyond) and these are likely to cause him a variety of increasing difficulties in many areas of his life: his education, career, relationships, mental health, and self-esteem if your son remains unaware of WHY he faces such difficulties. It's not a given, of course, that every person with ASD (diagnosed or not) will face all of these difficulties but it is a given that adding secrecy / paranoia / fear of discovery to the mix isn't going to benefit your son in any way.
Hi Endymion
Thanks for your reply. You make lots of good points. Your are right, it is an option for us to renounce his foreign citizenship. But he has lots of family there, and it is a big, and irreversible step to take and cuts off all sorts of other options for him in the future.
And of course, you are correct to say that if someone wants to look hard enough, they will find things out from other sources besides medical records. Ultimately, we have to strike a balance. From what I know, if conscripted into the military, he would definitely be required to disclose medical records (at least those held by his GP) but I would not expect him to have to disclose any other UK records, so my concern is much less when it comes to the school records; and, at least at the moment, the help he needs is much more centred around extra support at school, than anything medical.
As mentioned in my other replies, I certainly agree, he needs to understand why he is the way he is - and so do his family and school. A private diagnosis is definitely something that should be ok for us.
Thanks
Jim