BuntyB Report post Posted April 15, 2006 Hi everyone, I thought diagnosing my 13 year-old would be a doddle. His younger sister has a dx and through me helping to run an ASD support group, I could clearly see where my son's traits came from. We didn't bother with a dx at first since I didn't see the point in dragging him through it, nor did he want that kind of attention. However, he ran into difficulty at secondary school- teachers completely misunderstood him thinking that a. he was gifted, and b. he was lazy because he didn't 'try' with certain homework. They didn't realise he didn't understand the concepts they were using, but has a very good memory for facts. They did say he copes well at school (falls apart at home) so thought they could offer more help with a dx. We saw the psych who nodded and said 'I think we are working to 'the label', but we'd like to do some written tests'. We then saw someone else who did some tests, was completely patronising, and has now written to me to say that she doesn't think a diagnosis would be 'helpful at this time.' What does that mean? She also said that she heard from me that I didn't want a dx. Excuse me? What I did say is that we initially didn't seek a dx because I already parent him as if he has As, because that's what works. We don't have a problem with 'the label', IMO, it makes no difference. What we need a dx is for everyone else!! If she thinks he isn't AS, then I'd like to know, but I can't understand what 'not helpful' means- to whom? Quote Share this post Link to post Share on other sites
Flora Report post Posted April 15, 2006 Shona, a very similar thing happened when both my boys were assessed. William was dx AS and dyspraxia. Luke's assessment took longer to do and when I went for the results they told me SPLD, autistic tendencies and learning difficluties. This was in 2003. I found out last year that Luke's dx was infact ASD but the team felt that as I'd only recently had one child with dx an ASD they didn't think it would be 'helpful' at that time to give that label, so instead they listed all his difficulties. I don't know why they do this. I know I'm not the only family this has happened to. It has really confused the issue regarding Luke, because I was under the impression that once he had got over his language difficulties he'd be perfectly normal. Hope you can get some proper answers soon, and no more of this woolly 'not helpful at this time' rubbish. Lauren Quote Share this post Link to post Share on other sites
justamom Report post Posted April 15, 2006 What we need a dx is for everyone else!! If she thinks he isn't AS, then I'd like to know, but I can't understand what 'not helpful' means- to whom? I bet you feel like screaming "not helpful" off-course its helpful - in my opinion its helpful for what services you are entitled too and what about at school it could help them understand him more!! Could you not ring her up and speak to her regarding this because you are left in limbo and its not fair... Justamom Quote Share this post Link to post Share on other sites
jomica Report post Posted April 15, 2006 Hi Shona - you're entitled to a second opinion, if this psych (presumably a doctor? If not, s/he can't give a diagnosis anyway!!!) won't be helpful. Go back to your GP and ask to be referred to a different consultant. I think this person's attitude was very unhelpful to you. Quote Share this post Link to post Share on other sites
phasmid Report post Posted April 16, 2006 ...she doesn't think a diagnosis would be 'helpful at this time.' What does that mean? Oh does this sound familiar Shona! We were told almost exactly the same thing when Phas Jr was first seen regarding possible ASD aged 3. Years later, after he was dx'd with AS, we found he had been dx'd as autistic aged 3. At the time they came out with the same sort of cr*p you state above. When we look back we got a lot of things right, perhaps more by luck than judgement, but there were things we did or that happened that simply would not have occured had we been told of his dx. So, for that reason if no other, a dx should be given. Quote Share this post Link to post Share on other sites
LizK Report post Posted April 17, 2006 One of the few reasons I can see a diagnosis not being helpful is if there is some genuine clinical uncertainly about what the real diagnosis is and not wanting to give a child the incorrect diagnosis. If the diagnosis is certain or could be made certain by tests or assessments then 'pretending' it isn't there really isn't helpful to anyone. Not giving a diagnosis doesn't make a child with ASD any less autistic which I think is a misapprehension some HCPs work under! Hope you can get somethign sorted out Lx Quote Share this post Link to post Share on other sites
