Viper Report post Posted January 3, 2006 (edited) As some of you know, Ben saw a team at xxx (name removed by moderator) hospital for a DX. They said they wanted to observe him at school to finalize the DX. Well now that Ben is home educated we seem to have reached a full stop. They can't DX him without observing him at school and he wont be going back. I really don't know what to do now. xxx (name removed by moderator) have not been in touch since I told them about home ed-ing. I don't even know if he still needs a DX. The reason we wanted one in the first place was cos the school were pushing for one. Were do we go from here? Viper. Edited January 11, 2006 by nellie Quote Share this post Link to post Share on other sites
Brook Report post Posted January 3, 2006 (edited) Viper, Why cant they observe him at home? Or in another setting. Do they think that AS only happens at school. Maybe you could get on to them and suggest another setting, if in the future you decide to try school again, then a dx could be useful. Sorry cant help, I dont really understand their logic. Brook Edited January 3, 2006 by Brook Quote Share this post Link to post Share on other sites
oracle Report post Posted January 3, 2006 Viper I hoped that this would not happen to you but I did suspect that it might. You must point out that because Ben is no longer in school, this does not mean that you do not need to find out what is or is not going on with him. I know that in our area one of our guys from CAMHS can and does go and observe the child in the home. Where better - school is an 'Alien' environment where the child either copes and explodes at home - in which case there are 'no' problems. Or explodes at school and not in the house. In which case the parents are usually blamed When we first took Matthew out his Consultant said well you will no longer need me. I looked on in horror. I said of course we will need you more than ever because you are now our only link to service provision. I am pleased to say that she understood and has seen Matthew twice a year since. We also get speech therapy in the home - education is not the be all and end all of every other service provision. Try the nice approach first and then you can at least see how the land lies? If you need any help then just you YELL Carole Quote Share this post Link to post Share on other sites
Viper Report post Posted January 3, 2006 Brook, the reason they gave was, they need to see how he gets on with his peers.They did an extensive assessment on him and said he has definite AS traits but also has signs of Oppositional defiance disorder and separation anxiety disorder. He doesn't socialize with his peer group although I do have his name down for Beavers but they can't take him until he is 5 3/4 which will be in September. I thought the very fact that he has never copped in either a nursery or school setting would be enough to DX. I suppose they want to see what bit of his problems cause the anxiety at school. Who knows? Viper. Quote Share this post Link to post Share on other sites
rainbow queen Report post Posted January 3, 2006 i think this is awfull its like just one excuse after another trying to get a firm dx im still waiting it all seems to airy fairy talk and no action- as if we didnt have enough to deal with its so hypocritical. Quote Share this post Link to post Share on other sites
oracle Report post Posted January 3, 2006 Viper OMG I can not believe what they are telling you. I live in Sunderland a million miles away from xxxx (name removed by moderator) and we manage to have an assessment centre where they can observe kids with their peer group. Some are already at school. What age are they operating in down there? The dark ages. Carole Quote Share this post Link to post Share on other sites
Guest flutter Report post Posted January 3, 2006 i dont get this, our diagnosis came from forms, form us and school and obsv by someone at cahms one to one, then she had a group speech and lang assesment, that showed peer stuff, they never once went into school, just as well really cos they said there was nowt going wrong! You need to shout, dunno where tho sorry <'> <'> Quote Share this post Link to post Share on other sites
Viper Report post Posted January 3, 2006 The other problem we have here is that there is no one available at CAMHS either. They refered Ben to CAMHS and we now have to wait for the post to be filled before we can see anyone. Brook comes from my area, she can tell you what it's like here, funny enough she home ed's as well. Stange that. Viper. Quote Share this post Link to post Share on other sites
baddad Report post Posted January 3, 2006 Hi Viper - sorry, have no real input on this except <'> , 'cos this is outside of my experience... One thing that does come to mind, though: You said that one of the major 'pushes' in seeking DX was the schools acknowledgement of the problems, and that you home ed because things broke down there. Surely any records kept by the school will provide confirmation of the kind of problems they were facing, and that should be enough given the observations the professionals can make in other environments? They certainly CAN'T deny (given the outcome) that the behaviours they've seen elsewhere weren't being replicated in school, can they? So far as DX goes, it's my PERSONAL belief that you do need it, regardless of whether it seems necessary at this particular point. You have no idea of what the future might hold, and while there's a line of thinking that you could cross bridges as you come to them there's also the very real fact that eligibilty criteria are getting tighter and tighter and that support networks are becoming increasingly stringent about access... Services SHOULD be needs led, but we all know they're not. Without a diagnosis you haven't even got a defined need... Hope that's helpful, and very best with it L&P BD Quote Share this post Link to post Share on other sites
denise2 Report post Posted January 3, 2006 Our son got his diagnosis from a paediatrician and a psychologist (seperatly) without even involving the school. We started home eductaing him last February and the paediatrician has now referred us to CAFTs and communication team as we don't have any links through the school anymore. It seems to me it depends on where you live as to what the criteria. I also think a diagnosis is essential our lives changed overnight from the diagnosis, suddenly everybody was so nice and helpful and I was no longer just a paranoid mum!!! My son also found it very strange how nice everybody was to him, instead of treating him like a badly behaved child. Before the diagnosis I am sure people thought it was our bad parenting but because a doctor now says he has AS they will accept that. Does Ben have a sibling or a friend he can be observed at home with? Or any groups he goes to? My son was never observed with other children but he was older than Ben ( just turned 9) and they could see quite clearly feom his behaviour and the answers he gave them, so he got his diagnosis quite easily. Good Luck Denise 2 Quote Share this post Link to post Share on other sites
Brook Report post Posted January 4, 2006 The other problem we have here is that there is no one available at CAMHS either. They refered Ben to CAMHS and we now have to wait for the post to be filled before we can see anyone. Brook comes from my area, she can tell you what it's like here, funny enough she home ed's as well. Stange that. Viper. Just a quick post, otherwise I might get on my high horse. Yes, can vouch that our area for education for our kids is 100% pants!!! That was as polite as I could possibly be. Brook Quote Share this post Link to post Share on other sites
Viper Report post Posted January 4, 2006 The reason they gave for observing him at school was because he is complex and is dificult to DX one way or the other. Whatever that means. The thing I don't understand is my DD was DX'ed at 9 and she shows less signs than Ben. She has AS but copes well (disguises it well) and she was DX'ed by our local peadiatrician who said she couldn't DX Ben. This was all done by assesment at the local test centre. They had a report from school that said she was rude and ignorant. (that was her teachers view of her) Viper. Quote Share this post Link to post Share on other sites
oracle Report post Posted January 4, 2006 (edited) I forgot to say Viper that we also have as much or as little input from the Autism Outreach Team as we want or need. But no invovement with any school. For the sceond time today I realise how lucky we are here - should I tell em --- errrrrrrrr No don't think I will It might go to their heads and lead to a reducation in service provision Carole Edited January 4, 2006 by carole Quote Share this post Link to post Share on other sites
Canopus Report post Posted January 11, 2006 peer group A favourite term of the educational psychologists who think they are the experts. The question is just exactly how is the term peer group defined? The answer is other children who by the virtue of the day they were born are in the same class at school as your own child. Quote Share this post Link to post Share on other sites
nellie Report post Posted January 11, 2006 Viper, Sorry, I have come to this thread rather late. Did the assessment centre relate this information to you personally or did you get it second hand? If you got it second hand then I would contact them in person and discuss your concerns. Nellie xx Quote Share this post Link to post Share on other sites
Viper Report post Posted January 11, 2006 Sorry Nellie, didn't see your reply/question. the team at xxxx (name removed by moderator) told me when I was there that they wanted to observe Ben at school. Viper. Quote Share this post Link to post Share on other sites
nellie Report post Posted January 11, 2006 Viper, I think it's definitely worth getting in touch with them again. They didn't know he was going to be out of school when they said that. I find it hard to believe they wouldn't diagnose him if he's out of school. I would ring them up. Sorry if I've misunderstood. Nellie xx Quote Share this post Link to post Share on other sites
Viper Report post Posted January 11, 2006 The thing is Nellie I feel so let down by them. I thought the so called Best team of phsycs in the country in this field would be able to give him a dx. it was going so well, the follow up was brilliant with a phone call every fortnight to help with coping strategies. Then at the end of November the man ringing me left and since then I have had a written report about the phone calls and nothing, a big fat zero. I was told they would contact me to follow things up and discuss how to DX. Viper. Quote Share this post Link to post Share on other sites
nellie Report post Posted January 11, 2006 Viper, I still think this may be a breakdown in communications. It could even be a misunderstanding. If you are really looking for a diagnosis then ring up and make enquiries. What have you got to lose? Nellie xx Quote Share this post Link to post Share on other sites
