Clueless!

Good evening all,

I am busy navigating my way around the world of ASD, my 13 year old boy was diagnosed in Jan this year. It was not a huge surprise, I had been aking for support since her was a toddler...I completed a 12 week parent class, and was going to be put on another! But luckily we managed to access support via a different agency and here we are! Since diagnosis we have heard nothing and received no support. I have badgered the school adn finally go them to accept that they must be involved with his diagnosis, and put things in place...but his anger (when anxious) at home is so hard to deal with. He has always had meltdowns. People that have not witnessed them, think that we exaggerate but it is HELL! HE has had one tongiht, as he is settling back into school life after the easter hols (always worse first week back). He is as big as me and when he switches, he is unreachable. Problem is, you cant contain him, he follows, goading...and will just keep on going...its awful...I feel so sorry for my other son, he is 15..it is so difficult for him too. I have contacted a link on here, to see if we can access some family seminar and really would like some anger management for him too...we wil see....Naively I thought diagnosis would be the beginning of help for us all, but we have just been left swimming alone in a deep dark sea... THanks for listening x

  • Diagnosis also got us nothing (except the ability to que jump at legoland/London eye and a free carer merlin pass!).

    I too was fobbed off with nothing....except our issue was at school - fine at home.  Almost a year ago we were having meltdowns frequently and I thought school were on the verge of saying they could not accomodate him.  He also started to have strange almost panic attacks that lowered his blood pressure so I was being called to school with a child faint unable to walk etc - within an hour at home all ok!!

    consultant who gave diagnosis said this is a school problem and there was nothing they could do.

    one day I finally thought this is not right.....got a private psychiatrist appointment who referred to a fantastic psychologist and 18 sessions later he is amazingly better. School says his behaviour is no longer unusual. Psychologist said 5 or so years ago we would have got this on the nhs but basically all nhs ASD unit do now is diagnose - no treatment. 

    can you afford to go private?

  • School can be v stressful for our children, esp mainstream secondary.  Do you think there's enough support in place for him, has he got a statement?  Quite often our children let all their stress out in the "safety" of their home.

  • BTW sorry for all the typos, am still a bit wound up from meltdown and was typing very fast!Undecided