• Replies 17 replies
  • Subscribers 25 subscribers
  • Views 5706 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Fighting for a diagnosis

christine

Hello all,

I wonder if anyone else has been in this situation - my 5 year old son has been waiting for his Ados for 2 years. I always knew he was different from about a year old, I cant pinpoint exactly what it was, but as he got older, his behaviour did not quite fit, and when he went to Nusery, his teacher quickly flagged up to me that she agreed with my worries that he was autistic. 

We got him referred to the child development clinic, and after 2 of waiting, he finally is going to get his Ados at the end of the month. The lovely speach and language specialist was out to see us the other day, she is the one who will be playing with him at the asessment. Unfortunately he was having a great day when she came and she says she cannot see any signs of autism, and that his interaction with the other children at Nursery was fantastic. 

This is just a tiny snippit of the picture she has seen, and I dont understand how she can make assumptons on one day and then an hour of play at the assessment. 

He has an amazing Nursery teacher who has supported him in every way he needs. He has come on in leaps and bounds since he began, but only because of her input and strict "regimen"  when he goes into Primary 1 after the summer, I am worried he is going to struggle greatly with the change, and there will be no extra supprt for him if he is not diagnosed, and then, if he needs it, he has to go back through Cahms, which could be another 2 year wait for a re-assessment.

I feel like I am pushing constantly to make people see something in my child that I dont really want to be there anyway, and am starting to think it is all in my head. I also have a feeling that one of my 3 year old twin girls might be showing signs of ASD as well, but everyone thinks I have become obsessed and I am sure some friens think I actually am thriving on having something wrong with my children.. sometimes feel I am going mad....is it only me?

Parents

  • hi there can anyone please give me some advice my son was diagnosed with ASD last sept he left mainstream school last november, since going to special school he has just had a CAF  and they are questioning his diagnosis of ASD  , my son has had walking difficulties since  he could stand  and kept falling down , he never baby babbled are mixed well at school ect  , at the age of 8 had went through a dcd clinic which diagnosd him with global motor skill diff and short term memory , and aknowledged his left sided weakness but would not give a diagnosis in writing , only said he thought he had dysparxia n hypermobile joints, then he would see him in another 12mnths, i asked my gp for a 2nd opinion which i recieved out of the borough he was diag with unilatrall cp the consultant  then last year gave him a a additional diagnosis of asd  now the school phyciatrist is questioning it and looks like she wants to do assessment hrself?  then at the caf the ot that saw my son at the dcd clinic assesed him for a hour are so at school and said he has no problems ,initiated play, spoke clearly, walked up 2 flights of stairs, listened and done what ws asked of him no behavouaral problems at all , could fasten his shoe laces , even though not tight to keep his shoe on, i didnt agree i couldnt believe it i never see this at all, she then went on to say it was all anxietys not ASD, and that she didnt agree with his diagnosis as she felt it had been made of the cuff as her side have to go through numerouse assesments before giving a diagnosis....  considering she never new my son till he was gone 8 and has never had any involvment with him since then i am annoyed in respect of her  x he wears a afo on his left leg for support and is awaiting his botox injections,his teachers say he is a v well mannered boy who they never see anxietys, at all  ... at home he screams shouts, hits me and his dad and his siblings , growls at us in a robot voice, constanly is argumentative , repeatedly asks the same questions over and over again, at night does not like to sleep , has fears and will not sleep alone ,and  is compelled to tell everyone what he is thinking individually and at night awakes and does the same wakes everyone up independendently to tell them what he wants them to hear, he cannot abide crowds , supermarkets ect gets angry and fearfull,  and becomes aggitated and wants to go , leave ,academically functioning still around a 5yrold, he doesnt understand jokes, sarcasm, and takes everything literally ect ect  i rang his consultant as i was very upsett by this she was so annoyed , now i have a app at home with the dr phsyciatrist coming out to assess my son at home from the cyps and school !! i am not having my son put through assesments again to please others this is just not fare and very upsetting to us all  can anyone help me please xxxxxx

Reply

  • hi there can anyone please give me some advice my son was diagnosed with ASD last sept he left mainstream school last november, since going to special school he has just had a CAF  and they are questioning his diagnosis of ASD  , my son has had walking difficulties since  he could stand  and kept falling down , he never baby babbled are mixed well at school ect  , at the age of 8 had went through a dcd clinic which diagnosd him with global motor skill diff and short term memory , and aknowledged his left sided weakness but would not give a diagnosis in writing , only said he thought he had dysparxia n hypermobile joints, then he would see him in another 12mnths, i asked my gp for a 2nd opinion which i recieved out of the borough he was diag with unilatrall cp the consultant  then last year gave him a a additional diagnosis of asd  now the school phyciatrist is questioning it and looks like she wants to do assessment hrself?  then at the caf the ot that saw my son at the dcd clinic assesed him for a hour are so at school and said he has no problems ,initiated play, spoke clearly, walked up 2 flights of stairs, listened and done what ws asked of him no behavouaral problems at all , could fasten his shoe laces , even though not tight to keep his shoe on, i didnt agree i couldnt believe it i never see this at all, she then went on to say it was all anxietys not ASD, and that she didnt agree with his diagnosis as she felt it had been made of the cuff as her side have to go through numerouse assesments before giving a diagnosis....  considering she never new my son till he was gone 8 and has never had any involvment with him since then i am annoyed in respect of her  x he wears a afo on his left leg for support and is awaiting his botox injections,his teachers say he is a v well mannered boy who they never see anxietys, at all  ... at home he screams shouts, hits me and his dad and his siblings , growls at us in a robot voice, constanly is argumentative , repeatedly asks the same questions over and over again, at night does not like to sleep , has fears and will not sleep alone ,and  is compelled to tell everyone what he is thinking individually and at night awakes and does the same wakes everyone up independendently to tell them what he wants them to hear, he cannot abide crowds , supermarkets ect gets angry and fearfull,  and becomes aggitated and wants to go , leave ,academically functioning still around a 5yrold, he doesnt understand jokes, sarcasm, and takes everything literally ect ect  i rang his consultant as i was very upsett by this she was so annoyed , now i have a app at home with the dr phsyciatrist coming out to assess my son at home from the cyps and school !! i am not having my son put through assesments again to please others this is just not fare and very upsetting to us all  can anyone help me please xxxxxx

Children
No Data