MumTee Report post Posted January 31, 2006 Just a quickie question.... my son is coming up for 3 and is displaying all the signs of classic autism. So far hubbie and I have been chasing a dx because we feel it will help us access all the help and support he will need - however, health professionals keep saying in different ways that not all parents want a diagnosis am I being naive? Is there a downside to getting a dx that I dont know about? Quote Share this post Link to post Share on other sites
cmuir Report post Posted February 1, 2006 Hi Like you, I've been chasing a diagnosis for my 4 year old son. I've often asked the same question. One reason could be that the moment you get a formal diagnosis, that child has to be cared in terms of schooling and from specialists ? and that can cost a lot of money! Perhaps depends on which you area you live, etc ? lottery postcode. I'm in the situation whereby because my son exhibits aggressive behaviour (daily basis) and lashes out at both children and adults. As a result, we've just heard that he'll be given one-to-one care at nursery. This is fantastic, but can't help wondering what the specialists have to lose by giving us a diagnosis. I'm at the stage whereby I'm not going to allow many more assessments. It means my son seeing lots and lots of different people and being stressed; us being sent from 'pillar to post' and emotionally it's a real rollercoaster. Hope you get your diagnosis! C. Quote Share this post Link to post Share on other sites
Flora Report post Posted February 1, 2006 It depends on where you live. When my son's were dx'd (both around the same time) our consultant told me that in some areas they refuse to label. He gave me the choice of giving the name to the dx, or not labelling but giving instead a list of their problems. His advice to me was to take the label as just focussing on the problems is often complicated, in that the clinical picture can change as the child grows up, and in different circumstances. Looking back, I realise I hit the jackpot with our consultant. I was reluctant at the time to accept the label choice (I think I was in denial and wanted to be told my boys would grow out of it ), but I'm now thankful that this is what he advised me to do. We've since relocated and I know that the new area we live in would have been a completely different story, particularly with my youngest child whose problems are much more complex than my eldest who has the full monty of AS behaviour. If you're not satisfied, you can always ask for a referral to a different consultant. It's not ideal because you're then put on a waiting list again, but in the long run it could pay off. Lauren Quote Share this post Link to post Share on other sites
Elanor Report post Posted February 1, 2006 am I being naive? Is there a downside to getting a dx that I dont know about? No! - if you've got concerns, get your child referred to a specialist (don't bother with educational psychologists, speech and language therapists - go for your local CAMHS (see jargon buster above). There's long waiting lists usually, so there's no reason to delay. Elanor Quote Share this post Link to post Share on other sites
Klou Report post Posted February 1, 2006 Hi I wondered about this but it has become very clear that children need the 'label' to access the right help at school and it seems to be a juggling act between health professionals who pride themselves in not labelling and parents who want to know what they are dealing with. In my experience, which doesn't even cover the fun that starts when trying to go through school for dx. I went to my GP and health visitor who, possibly because I had been mentioning autistic tendencies since his one year check, referred us to our children's centre where luckily we have one of the leading consultant paediatricians on ASDs etc. We then got a multi disciplinary assessment involving SALT, OT, clinical psychology. When we finally got to the point of them accepting it wasn't just a problem at home due to the nursery report having been submitted they finally started to broach the subject of dx. If I hadn't stated that I did want one if he fitted the criteria for something they would not have given it. I had to tell them this several times generally through our SALT, OT meetings and I think someone must have swayed this a bit. Thank you SALT. If it were up to the clinical psychologist it would not have happened. My only concern about dx was whether he/we have to disclose it and whether it will hinder him doing things in the future - jobs, further education etc. As things are I am hoping that his prospects will be improved because we got help early and we can minimise difficulties with learning/social relationships at school, even if it is only that we help him cope better from the start. Quote Share this post Link to post Share on other sites
