well it went ok sort of, we didnt get a dx however.................
at first the meeting was very tense with the consultant talking over us and not letting us speak, she said there needed to be more evidence for a dx of ASD, i asked her how much more evidence did she want, and did she not believe what we were telling her, oh no no i do believe you but she appears to function well in nursery so i said yes well lots of children DO, my own son in particular appeared to function well in school but he still got a dx of AS when he wasnt it school for 2 years, she rambled on and on about there not being enough evidence so i opened up my file and pulled out the DSM-IV criteria and reeled off why dd SHOULD have a dx of an ASD, she went extremely quiet and i did all the talking for the next few minutes, she said
im not saying she ISNT ASD im saying that there are only SOME features, so i said ok well what about a PDD-NOS dx then?
she went very quiet again.
she said (after flicking through dd,s notes) we could be talking pathalogical demand avoidance syndrome here because what you are telling me and the professionals are telling me is making me think of this,but we would have to go to sheffield, so i said do you mean Digby Tantum and she looked very shocked and said YES.
she asked me about mike, and who dx,d him and i said the NHS and also a private specialist and she said which school does he go to and i told her and she looked surprised and said "how did you get him in there? so i said "its called 3 tribunals and a lot of persistence" and she said oh very quietly.
so, we still havent got a dx, but i understand why she is reluctant, she is writing to the new consultant paed (and copying us in at our request) she has asked that there be an independent asessment done of dd (but she doesnt know if they will pay for Digby Tantum to do it) and she is also writing to the nursery to TELL THEM that they MUST address dd,s issues namely trouble with toileting etc etc and treat her according to her SN.
now the independent psych who will asess her is the one who refused to dx mike with an ASD until i discovered that she hadnt carried out the ADOS correctly and i wrote to her a year ago to ask her where was the copy of the video and could we see the notes, she bactracked immediately and dx,d him with PDD, so im hoping she will do a through job on dd and not try to fob us off.
oh nothing goes easily does it?