Thursday, 19 November 2009

At the time of Autism diagnosis

 After I had had my son;Little Legs (LL throughout this blog) referred to the local children's centre, it was a complete uphill struggle to get a diagnosis. I had heard that the local authority were not handing out dx's due to funding. Whether or not this was true is another matter. But they told me he was a perfectly 'normal' child. I thought it was absolutley ridiculous and asked for a second opinion. I had to wait a long time but saw a Guys expert in the field so it was worth the wait. The thing is in my experience, the longer you wait for a diagnosis (dx) then the more turmoil you are put through. I felt like I was going crazy not knowing what was wrong with my child. It is such a harrowing time and feel that issues like this should be looked into with ease rather than having to fight this awful system we have here in GB. Anyway, we visited Guys Hospital and I was told LL  has high functioning autism and she told me it was 'absolutely ludicrous how it wasn't spotted before'. I asked the Professor from Guys, if it were the same as Aspergers and she said 'no'. After all the things I have read saying that HFA = Aspergers I was baffled. She told me that the autism was severe but he had normal cognitive level shown by a WISC IV assessment. She also said because of his lack of speech when he was young and the cognitive result, she said he is high functioning AUTISTIC and not aspergers. She told me that IQ is just a tiny measure of someone's adaptive functioning and it does not represent the level of the adaptive functioning impairment.  At first I didn't understand, but as time has gone on I really do understand what she meant. My son really seems more classically autistic to me but does talk now but he also has a severe expressive language difficulty, and is agenda based talk only. Some days he will not talk to me at all - he doesn't 'do chatting'. When I hear other children asking their mums/dads something and having a natter, they do not realise how lucky they are to have their child chat to them.  He really does not like to play with other children and keeps himself distant. He really has extreme difficulty in social situations and has severe impairment of social functioning. I attend the local autistic groups with him and compared to the other children there he really does struggle. I am not saying the other children do not struggle, but LL seems to be much worse. I regularly leave the groups early due to this. When I look at some of the children with aspergers, I really can see the difference. I found an article here that explains it to a tee. My son is now 7 and I still have to help him with toileting, getting dressed, eating etc. So despite his normal IQ, he struggles with every thing in life, this is where the adaptive functioning comes in! He has been placed in a new Specialist Unit and even they told me to keep him home when he is tired or in a bad mood. I couldn't believe this and think it's a disgrace that they cannot cope with my child. I know he has extreme behaviour but it is a Specialist Unit and they,I feel, should be able to deal with things
So from the time of thinking something was wrong with LL (13 mths old) to get a diagnosis (6yrs old) was a complete battle. Why should parents have to go through so much trauma in order to get help with a disabled child. I think it is a disgrace that we have to literally fight for everything.

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