any thoughts?

[lisa35]

Hi, just wondering what others thoughts are.

My 12 yr old was diagnosed" last year as ASD traits, nothing definate, we got help from ot, school,clinical pysch,etc

He still has social difficulties,and all the issues he always has had, we ve used techniques and to all intgents and purposes we act as if he has asd/aspergers

The paedriatrician was reluctatnt to give a definate dx and in fact got quiyte funny when I pursued her for definate answer!

Any way, lifes still tough at times, and recently he s got friendslywith twin boys, one of which is carbon copy of our son!!!

This boys mum said she finally got a dx after third referral and went to elliot house in kent

She strongly feels our lad is def asd , Im not sure what to do, dont want to go thro yrs of assessment again, but if it was just a day assessment w e have nothing to loose? Then again, what if they say theres nothing at all!

Its been wonderful having these boys for his friend, first time in 12 yrs he has someone that understands him and likes him for who i=he is! Fantastic having other parents that understand too

Has anyone else pursued dx this route? And are youglad you did? Im not sure if its to his advantage, maybe it will be later in life?

Thanks

Lisa

[dooday24]

hi lisa we have been round And round in circles for yrs with reece been told many times he has asd traits but as no formal diagnosis cant get any help at school ect so i have fought 4 about 4 and a half yrs waiting 4 reeceto get an assessment done by camhs and i went 4 a preassessment with them just before xmas and awaiting a letter from them to see someonr to get a formal diagnosis............

if u think it will benefit yr child then push them and get wat u need

deffinetly think it will help reece get wat he needs wen he gets the formal dx

sorry dont seem to be much help

love donnaxxxxxx

[rainbow queen]

i just wanted to say

 

i wrote a letter of complaint -when i was getting nowhere-and in it i put that i will be asking my gp for a referal and 2nd opion to go to elliot house....

 

i asked my gp who tryed to do it for me -but told she couldnt do it while my son was under the cdc where i live..........i still do not know if this was a valid reason ect....or just to put me off- not on my gps part as shes a very nice understanding lady,but i think it was maybe disscussed with others who stopped it.

 

any way i continued to complain and in the end i did not need to go there,as eventually he got dx ,he got dx last may when he was 5.............it took me from roughly about age 1 to get to that stage.

i very nearly gave in many times,but with help from this forum i actually got there.

rq xxx

[JsMum]

Hi A Peadatrition that J was under gave me a referral to a specialist centre in Nottingham for a full assessment two years ago, the local PCT turned it down stating it would cost thousands of pounds and insisted he go throw the local cahms he was reassesed and they referred him to the social and communications team that was newly formed.

 

I wanted J to be assessed in Nottingham but the PCT wont fund it as he is involved in two services here, he was assessed privately in a development centre and he does have ASD and SID but we are waiting for a NHS diagnosis for support for secondary school and social provisions.

 

I would really still recommend that you do ask your local GP for a referral to a development centre especially if it spersific and you have concerns that if left undiagnosed wil impact on there development.

 

If you can get a referral then you have nothing to loose and you can appeal the decline, the path to do down is exceptional treatments throw your local Primary Care Trust.

 

JsMum

[Karen A]

Hi lisa.If you have good support in place with a Dx of ASD traits it is worth considering carefuly what the implications for support might be if your DS went through further assessment and still did not obtain a Dx AS.

Ben has a Dx of DCD with Social Communication Difficulties.The psychiatrist was not able to make a clear AS Dx although Ben has some AS features.We have decided not to ask for further Assessment at the current time.In our case the next stage would be an assessment called the 3Di that could be done within Camhs localy.However it would be very stressful to go through more assessments and we have decided it is not currently a priority.Also in our case it is possible that if Ben was found not to have AS then the support he currently recieves from ASD outreach could be withdrawn.

Ben is aware of the debate about whether he has AS.His main worry was whether he would have to leave a Forum that he is actively involved in if he did not have AS-otherwise it is not an issue for him.

I think it would certainly be worth finding out exactly what the assessment would involve before you decide.It may also be worth speaking to the paediatrician if it is possible.He/she may have valid reservations for not making a clear AS Dx.Karen.

[Karen A]

Hi again.The other thing that is worth considering is whether your DS would get more support with a clear Dx in your area.If a clear Dx would make it more likely that you could access services that are not available without a Dx then it would be more worthwhile.Karen.