Should I get my son diagnosed with ASD

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

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

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

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.    

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 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