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So confused: DX or Not for HFA?

(3 Posts)
blindspot Fri 18-Mar-16 12:41:11

We are approaching the final assessment stage of the autism assessment process, and the CP has queried the wisdom of labeling DS with a HFA diagnosis, when to all appearances he seems to be developing and coping at an alarming rate. She openly stated that a DX is likely to impact negatively on his future employment chances and many other aspects of his life. She also stated that a DX doesn't really passport him (we live in NI) to any specific treatments that he couldn't otherwise get through normal GP referral.

So what I would like to know is what specific help is your DC with a DX for HFA getting and how this is helping (and are you still having to pay for certain help they need yourself?)
OR
If your DC has HFA and no formal diagnosis what services/ therapies are you finding you're having to pay for or provide yourself.

What we would hate to happen is that we label our DS and all we get is sporadic infrequent help at crisis points in his development, or that he gets the label and continues to cope to the extent that he doesn't need additional support.
Equally however, we are scared of removing him from the process based on his ability to cope at the moment, only later to find that his coping mechanisms unravel and we have no support in place if he comes to a major crisis point: the waiting times in this part of the world are historically long.

Cookingwine Fri 18-Mar-16 12:59:29

I am no expert, but if he copes well he doesn't have to disclose the dx in the future, however if he develops mental health/anxiety issues, having a dx in place could help him IMO. For DD having a dx confirmed is helping with school at the moment, as without dx they were not keen on making adjustments.

AttilaTheMeerkat Fri 18-Mar-16 13:17:12

Who is the "CP" you are referring to here; is this the community paediatrician?.

How old roughly is your son; teen, preteen etc?.

What is SEN provision like in NI?.

I would also speak to these people now if you have not already done so:-

www.senac.co.uk/

TBH I would take no notice of such comments; this person will soon disappear from your lives and you will be left to pick up the pieces anyway. I also think the claims made are completely without foundation and I am appalled you have been told such things.

A label to my mind is a signpost to getting more help; it can also open doors that may otherwise remain closed to you. Also your DS has likely already been "labelled" by his peers and wider society already so a proper formal diagnosis could only help him going forward.

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