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No Point In a DX??

(17 Posts)
leiela Sat 28-May-11 10:39:54

Ok i do feel like im repeating myself somewhat having explained this 100 times lol. But here it go's.

My son was assessed 12 months ago and the team determined he had ASD. At the time i panic'ed, stuck my head in the sand and hoped it would go away. He was my baby i didn't want to belive there was anything wrong. He's 11 now so not so much of a baby really but hey smile I refused the DX because i was utterly terrified about what it ment.

Roll forward 12 months and for various reason's i've realised that a) i need the diagnosis and b) i need to get him the help and support he needs.

I phoned the CAHMS team involved with the origional assessment and i've been told "getting him diagnosed is pointless" unless he isn't aggressive here is no support or funding available for someone in my son's state.

Basically she said his ASD was to mild to warrent support!!!!!!! Really does a child NEED to be aggressive to warrent support... i feel like i've been told he's not ASD enoguh.

Now the whole reason i am going down this route is because i realise he NEEDS support. He's 11 and i still help him clean his teeth got goodness sake!

Daily im noticing thing NT children his age do that he can't or doesn't situation's i shield my son though out of habit that i realise he needs to learn to cope with.

If i cant' get help and a DX is "pointless" how the heck do i progress? he go's to senior school in september and thank god we won the appeal so he's going to a good one, but even so .. i can't even contemplate how he will cope in that sort of enviroment.

My son is bright but he lacks what i can independent thought, every task needs careful laid out instructions. He get's up in the morning and i have to litterally tell him to get dressed, put his shoe's on, make some cereal etc.

this can't continue... is a teacher in school going to walk him from one class to another and make sure he remebers his blazer/bag etc because right now if you do not explicitly tell him to do something... he "forgets" for want of a better word.

justaboutWILLfinishherthesis Sat 28-May-11 10:42:33

Message withdrawn at poster's request.

smileANDwave2000 Sat 28-May-11 11:33:27

he sounds like he obviously needs help with social and his communication skills , its such a big part of ASD especially as they get to this age it shows all the more ,the environment and how his peers are towards them and , sensory issues ect and i certainly couldnt imagine sorry no i KNOW my DS wouldnt cope in MS secondary having been failed by 3 MS schools before,he too would have to be walked around probably before the rest of his peers came out of class as this really freaks him he cant cope with noise in lessons let alone 1,600 Dcs all comming out of class at the same time he would be missing the important bit at the end of lessons where instructions/ homework are given (not that i can get him to do homework its totally over his head)he has a working memory problem too but there are numerous other reasons i knew it wouldnt be feasible ,i have to practically hold
his hand or he forgets what to do next and drifts off i wouldnt even be able to get him to wear shirts ties and a blazer the materials would annoy/ hurt him he likes being undressed most of the time confused lol hed be stripping off in class my DS is moderate ASD though so im painting possibley a bad picture your DS may not have all these issues or to this extent when my ds comes home its top off (brrrr) socks and shoes off just jogging pants nothing else hes been like that since a toddler dont think that would go down too well in science class whilst working with bunsen burners lol but to get the LA ect to understand that/listen took a long time even though its all as plain as the nose on your face.

yukoncher Sat 28-May-11 11:43:31

even if a diagnosis gets DC 10 minutes more on an exam, it can make a good difference

leiela Sat 28-May-11 13:42:07

I agree he needs the DX but Cahm's seem unwilling to "go back" and give it.

I feel like they just can't be bothered to go back and put it in place, they just keep saying it wouldn't benifit him as there is no help availiable for children like him.

So really i guess im asking how can i make them give me the damn thing?

AllieZ Sat 28-May-11 13:59:41

CAMHS is not the only source of a dx and if everything else fails you can always have him dxed privately. It is important that you get him dxed ASAP because he's already missed out on the Early Intervention he'd have been entitled to if he has ASD and it's important to get him as much help as you can now.

smileANDwave2000 Sat 28-May-11 14:09:04

do you have that in writing the original time they dx ASD if so id be going around now looking at schools with ASD units and have you applied for a statement? it doesnt only have to be for the educational side but its also for the social and physical

linbam Sat 28-May-11 14:10:09

leiela my son is the same age and reading you post was like reading what i would post as my son is 11 and also due to got to comprehensive school in september and my son suffers from the same problems you have discribed, i am hoping on a dx before september as i know in my heart it is going to be a bumpy ride as you right they wont hold there hand and that scares me as my son needs more support than a timetable....

smileANDwave2000 Sat 28-May-11 14:32:34

good luck linbam i should have added my DS was in same position this time last year thankfully its sorted just before going to secondary so i understand both of you worrying its difficult enough for a NT dc moving schools . get in contact with PP as well they may be able to give further advice and will certainly help if you need phone calls letter writing ect or a mediator and someone to take notes at meetings, one thing they advised was that i went to local secondary schools , schools with ASD units and Special schools so you can get a ballanced viw of what would be the best environment for your DC also if you begin the statementing process obviously there will come a time you will have to give your views on which placement would be best for your DC

Goblinchild Sat 28-May-11 14:40:07

You've had some good advice here, but I'd like to add that it may well be worth your while making an appointment with his SENCO at secondary and sharing what you said in your OP.
Even without a dx, there are strategies that teachers can use to support the fringe elements, and it helps them to realise that he may not be intentionally being annoying when he forgets things or needs extra prompts.
A good SENCO will listen and inform and support, even without a dx and will help you towards trying to get one.
Is he at secondary yet, what do his primary school do to help him?

leiela Sat 28-May-11 14:59:17

We just won an appeal for the secondary school we chose based on his ASD, they have a good reputation for dealing with ASD but no specialised unit which is why the LEA wouldn't give us the place origionally but we won it by appeal.

So i am hopeful i'll get there support in making the transition easier.

This said i just feel i need help with him, support doens't stop at school, he's just not as independent as his should be at his age and i'm just at a loss as to how to help him. All i seem to do is make the problem worse.

Goblinchild Sat 28-May-11 15:19:28

You help him a step at a time, building strategies that increase his independence from you, being patient when things go pear-shaped and refining approaches until you get the best fit.
It is a long process, mine manages stuff now that I wouldn't have believed him capable of when he was 11, but there are other things he is nowhere near peer-equivalent on.

smileANDwave2000 Sat 28-May-11 15:21:29

CAMHS do one day courses on different aspects and NAS too also even if your dc is not in a SS you can go to the parent support groups they hold there which would help you to feel less isolated and be able to chat to others in same boat added to that they have speakers often ,its just like a parents coffee morning but with someone like AIT or salt and OT or whoever comes for informal chat at same time you might find that useful. you will pick up load info at those especially things going on in your area. then theres the outreach team they may if you ask come to see you/your dc at his school because you need other non educational support too .

Goblinchild Sat 28-May-11 15:25:17

This board is quite good too, for those WTF? moments. grin

smileANDwave2000 Sat 28-May-11 15:25:38

just to give you an idea what the outreach service does hth

smileANDwave2000 Sat 28-May-11 15:26:20

LOL@ goblinchild

dolfrog Sat 28-May-11 15:59:16


you could check your assessment with
Identification and Evaluation of Children With Autism Spectrum Disorders
and specifically Table 1
Diagnostic Criteria for 299.00: AD (autism)
and Table 2
Diagnostic Criteria for 299.80: Asperger's Disorder (Referred to as AS in This Report)

or you may have to identify the various developments issues that cause his specific problems separately or individually and rather than a combined diagnosis of ASD.

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