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Unofficially diagnosed no support

Gemcat

Hi I'm new here so hope I'm posting right

my son is 5 and has been having counselling for 2 years. His specialist has told me that he is on the spectrum but that she will not officially diagnose him as he is doing well academically. ( he's in reception but working at a level higher than year 1)

I haven't been given any support he has meltdowns at home though at school he seems to have shut downs when he will completely close him self down and block out the world.

when he has a meltdown he hits me strangles me punches and growls and often takes it out on his siblings

he is hypersensitive and doesn't like loud noises. I am waiting for is ear defenders to arrive as he doesnt like unexpected loud noises. When we are out he refuses to go into the toilets as he doesn't like the sound of the hand dryers.

 I'm not sure what I'm supposed to do I feel like I'm constantly fighting for him to receive some kind of support and help. I'm not sure what to do next I feel alone do I fight for a diagnosis or is there any support I can get without one

any advice support or links would be brilliant thank you in advance

  • Lots of ASD people do well academically. I was reading at an adult level before I left primary school for one thing...

    What a stupid argument. 

  • If he tries to get a job later and discloses this diagnosis then she may well be right (even with all these investors in people and all the other certificates employers use to give themselves a pat on their back) but there is no need for him to do so unless he wants to. That seems a very strange argument for a specialist to have, especially since people working in this area usually seem to believe that their own comparably accepting and understanding attitude is how the majority of people ticks, which is probably a bit too optimistic. And given that he's a child that struggles with some things now and would perhaps be able to get some support he can't get without a diagnosis it seems quite odd to give finding a job such a high priority, he needs to get there in one piece in first place...

    If it affects the way he will feel about himself later that may be a different matter - no idea how the benefits of an early diagnosis compare to the disadvantages there, guess there's no way of predicting this either and it will depend on what help is available and the attitude of people around him. But the same is true without a diagnosis...

  • Thank you irkablue, I'm going to give her a call and see if she can bump his next meeting forward, I'm starting to struggle with his meltdowns and he's a very strong boy, im worried he may hurt himself or his siblings. If she's still of the same mindset I'll be putting in a complaint and asking for a new specialist.

    She is the only person in my area that can give a diagnosis. Her reasoning was that saying he is autistic will just cause him problems latter in life when he looks for a job. Which I thought was a bit disrespectful at the time but I've never had to go through anything like this before. You're taught that a doctor knows best but I think on this occasion she is falling short on supporting him.

    thank you for your reply, it helps to have a second perspective to make things clearer

  • Get another specialist. 

    There is no reason the specialist should not diagnose him. Do  not accept their reasoning and seek another opinion. I'm actually kind of disgusted from what you've told me. Because ten or 15 years down the line - he'd be seeking a diagnosis anyway. Because he'll wonder why his thought process is different, why something so basic won't come simply to him... 

    "Believes he is on Spectrum'  but won't give him a diagnosis? I'm surprisingly angry on you and your son's behalf right now. Fight for the diagnosis, GemCat.  Demand reasons as to why they won't formally diagnose him? And what does good academics have to do with things? It'll mean nothing when social interaction or sensitivities impact his learning experience. 

    Please fight for your son. I really hope the 'Specialist' has good, solid meanings and (no offence) hope that perhaps they mean that THEY can't give a formal diagnosis, and help you find a specialist who can.  I really would hope that there was a misunderstanding :(

    Best wishes.