Thanks for your question Triggles, it actually gave me a lot to think about. The honest answer is, I am not sure why a dx is so important to me although I feel like we are in limbo.
Although the last report from the paed indicates that an AS dx is likely, they were the third paed that we have seen as all the paeds for the area have left, I think he was a locum??. The second paed stated "A child like M may not get a dx" I am not very confident when dealing with proffs so stupidly didn't ask for clarification. He is very passive in school and causing no problems, he does have meltdowns but they are aimed at himself (very self critical) so I presumed that was what she meant. He does fit the triad of impairment and is the typical "litlle proffesor". All the reports point to ASD but the EP for example spoke about not labelling children, Until we get the dx I am not counting my chickens.
School are supportive to the point of agreeing that something is wrong but other than an IEP and weekly social skills he isn't given any support. He is very anxious about school (and most other things).Until Y1 I was carrying him in kicking and screaming. He lives in fear of doing something wrong in school or doing his work wrong and is constantly scared. I worry that if he continues to be so scared he will become a school refuser.
He doesn't have a single friend, wonders around on his own, doesn't speak at all unless asked a direct question. He has been bullied on a number of occasions by older children. Recommendations made by the EP such as a sensory break haven't been implemented. He can cope most of the time but when it is wet play for example he cannot cope with the noise levels. I am going to mention this at parents evening. He struggles to eat his lunch because of the smells and sights of the dc eating and went through a spell of vomiting at lunch. This seems to have eased but he hardly eats anything "as he loses his appetite"
Physio won't dx dyspraxia until he has ADOS and have now discharged him as he could stand on one leg for 7 secs (wobbling) as opposed to 2 secs. OT only assessed sensory needs, he scored highly but again not a dx of SPD as they don't dx that?? Nobody has looked at his fine motor skills, he cannot fasten buttons, zips or indeed get dressed independently, wipe his bottom. His hand aches when he writes and now he has moved up to the juniors and the quantity of work has increased this is becoming a problem.
I just feel lost, it isn't a problem to manage his behaviour but that isn't helping him, it is like grounhog day. He says the same things day in day out. I am naughty, I am sorry, you hate me, I am stupid and cries. I can console him and calm him down but i can't get him to see that he isn't naughty and he hasn't done anything to say sorry about. It most probably sounds daft, but he can cry and say these things 50+ times a day and it can be quite wearing to be constantly reassuring and consoing him and is not doing anything for his self esteem.
I read on here about ABA and retained reflexes and i don't know if should I be doing these things with him. I know from reading other peoples experiences that a dx doesn't magically get help and support, so in short I don't know why I feel like a dx is so important.
Sorry for the looooooooonnnnnnnnnnnnnnnggggggggggg post :)