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Help with long hard DX journey for 14yr old

uberj

eldest son thomas is now 14, i have had concerns about him since he was 2,has always showed many signs of adhd or autism. When he was young,with having no previous experiance with young children took mother in laws advice that his behavior was normal and not to be concerned.

growing up he was a nightmare,temper,angry all the time,couldnt handle change in routine,very disruptive,broke everything thing he ever had,i could go on.

got to about 8yrs old and i couldnt handle it any more and mentioned it at a parents evening i had concerns. slowly things got started,assesments ect

assesments made him 1000 times worse as they would push his buttons to try and trigger his traits so they could see what he would do,and was really affecting his mental health (used to have to go twice a week) and when i asked "what help would he recieve if he gets a confirmation of aspergers" and was told "well none really" i called it a day.

when he went to secondary school,the teachers there noticed there was something about him,and re started the process,now we got further this time,and after a ADOS assesment which came back as a no/borderline an educational psycologist agreed that he did have aspergers (this would be may/june of this year) and we were waiting for it to go to final panal,and i thought that it was just waiting for the box to be ticked with the ed psyc's recomendation behind him.

Just had a call that the panal have said NO (no other details yet-Dr dealing with Toms case has to email them to find out why) and now have to wait again find out why.

I now have to somehow tell my husband (who whilst all this had been going on with tom,had got assesed himself and got an confirmed adult assesment for aspergers) that they have said no again.He is already heading into a depression again,could really do without this news!

I dont know what else they need to get a confirm DX-parents say yes,teachers say yes,ed psych says yes,ados was bordlerline

I feel as though the fight is leaving me,I was utterly convinced this time this was it. I actually cried when we heard from the ed phsyc when she said yes,as FINALLY it was'nt all my fault,There WAS something different about Tom,and SOMEONE had believed what we were saying.

In regards to DLA,i am unsure if i should try and claim or not. I have the letter from the ed psych that concludes that "although the diagnosis is not clear cut there is enough evidence to justify it"(an aspergers DX) but not sure if DLA will accept this as proof/would be enough to recieve DLA. I have looked at the DLA application forms and got a bit overwhelmed by it all ( i remember filling one in for the other half years ago! it took days to get through it all,but we recieved it for him no problems on 1st attempt,i suspect this was due to the fact we had DX letter stating he has aspergers from a phsycologist that DX him)

Where do i go from here-Can you go up to the panal more than once?? Is there any chance we will ever get the DX my son needs? We (both us and the school) are trying to get a DX so we can gain additional support for Tom at school (maybe a laptop or something to do his school work on as his handwriting is awful and he is loosing big marks on his exams due to this-otherwise academically he is a whizz kid,this has been one of the major struggles we have had,as we have been told at numerous assesments,that if his school work was suffering it would of been diagnosed ages ago!)

thanks for reading-jennie

  • hiya-i shall try and explain the panal thing as best i can.

    we too had the CAHMS informal chat/questionaire exactly as you describe,from then we went onto an ADOS assesment,this is also performed by CAHMS but with a different Pyschologist. His ADOS score was a 6 where a 7 is aspergers. After this they do a "silent" assesment where a education Pyschologist observers the child in class / around school and also speaks indepth to the childs personal tutor or anyone else at the school who deals with the child day to day and knows his difficulties. the outcome of his educational Pyschologist was that her opinion was that "although the diagnosis is not clear cut there is enough evidence to justify it" (the aspergers DX)

    when CAHMS have gathered all of this information,it is then passed onto a panel of 4 or 5 different drs/psycologists that make the final desicion. None of whom usually have met the child before. Obviously if ADOS score had been high enough if would be a yes,as we are borderline they have said no even thou the Edu Psych says yes.

    I have asked his main Psychologist to find out why they have said no,and she is emailing them to find out more,i have also been in touch with the edu psych who is going to do the same.

    These mysterious panals only come together to discuss cases every two to three months,so we have another long wait before we find out any more. It really is quite soul destroying!

    hope this makes it clearer-i just presumed that all of the country followed the same DX rules-i really should know better!!

    thanks for the reply-jennie

  • Really  feel for you and your family - it took three referrrals at 7 14 and 17 to get muy son a diagnosis.

    I'm a bit confused about the panel you talk about. Perhaps you can explain a bit more.

    Where I am CAHMS do the diagnosis , but not using ADOS and observations, but by a Pyschologist completing and online questionnaire with lots of development and behaviour type questions. It was just a conversation between parenets , my son himself and the psychologist - no panel and very informal. We never got to this stage on  he first two referrals as they did not have this process in place and they didn't have a pychologist at CAMHS at the time.

    2 of our referrals  were as a result of us going to the GP and asking for a referral. With your husbands diagnosis , this should help your case. Perhaps you can go back and discuss the situation with your GP - they may be able to refer you somewhere.

    I understand entirely how worn down by the process you are but Don't give up on the fight - your son deserves a proper diagnosis and it will help you too.

    As for DLA you don't need a diagnosis as the form is all about difficulties and needs