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Need some help and guidance with NOT being diagnosed with Autism.

4390evans

Hi everyone, 

Im in a bit of a panic here so I am hoping someone can help me.

Ive got a child of 2 who at 6 months old went through major heart surgery, she was a normal smiley happy baby. When she came round from surgery she was still very groggy and when I went to touch her she recoiled back in horror and there was something amiss for a while after that. I put it down to her being traumatised from the surgery and the pain afterwards. We had to hold her back doing alot of things a normal 6 month old would be doing at that age like rolling, sitting up etc.... I think she didnt trust me for a long time afterwards and its took us a long time to build that bond again. I have always known she has been a bit behind and I do blame the op, but she has excelled at everything like walking, crawling, getting up stairs eating etc the only thing that is a bit off is her eye contact and talking. She is nearly 3 and can say 5 words. She knows what she wants and will take you to it but she is just refusing to say most things. Yet she will make sound like words. Her eye contact is getting better. She is in daycare for 4 hours a day and has lashed out twice bit and pulled hair. She understands what you say to her, mostly. She attempts to get heself dressed. 

So the daycare tried to say she had trouble eating (rolling stuff round in her mouth, or holding food in there before swallowing) we had someone look at that as we have never experienced this problem with her and the peditrician agreed with us there was no problem at all.

We were recomended to go see another peditrician at the hospital we went to the appointment the other day and at this 20-30 min appointement he is wanting to get her looked at for Autisim which I think is ludicrous! All because she didnt give him eye contact?! Over the next 3 months he will be sending people out to assess her and report back to him. 

I felt he wasnt listening to me when I was saying that she was just delayed and I needed help for that. He was more concentrated on Autisim. 

I need some help to fight this as I dont know where to start, I know my child has not got Autisim, she is slow but does not have Autisim. Im going to fight this all the way but in the mean time I need to know what help I can get and who from for a child who is delayed. The peditrician said he cant offer me any help till he gives a diagnosis, is this right?

So sorry for the long post guys xx

Parents
  • Former Member
    Former Member

    Hi Songwriter,

    We have two problems in this discussion.

    Firstly, autism is a very difficult concept to discuss because it is so intangible, invisible and alien to everyman's common experience. My concept of what a "thing" is may be different to yours and our experiences are different. My concept of a thing is just something that provides a useful label that enables people to provide help for others who are suffering. (I'm aware that some people violently object to use of words like sufferers in association with autism but I personally am suffering because I have it). There is an underlying problem with communication and imagination that autism gives us alongside all of the other tics, foibles and traits that come along for the ride. If you spot the pattern of traits then it tends to suggest that you have the underlying diagnosable issues. I suspect that the OP's child has the underlying issues but the OP, reasonably, struggles with the logical step from "has traits" to "has autism". The traits can be an indicator that suggest due investigation and that is what might benefit the child.

    The second is that we are systematically not good at explaining ourselves and negotiating and seeing other people's point of view. This leads to frequent violent disagreements on this forum and I absolutely don't want you to feel antagonised or alienated by what I have said.

    We are all struggling with working out how to deal with it but I hope the OP (and us two too) are learning as we go.

Reply
  • Former Member
    Former Member

    Hi Songwriter,

    We have two problems in this discussion.

    Firstly, autism is a very difficult concept to discuss because it is so intangible, invisible and alien to everyman's common experience. My concept of what a "thing" is may be different to yours and our experiences are different. My concept of a thing is just something that provides a useful label that enables people to provide help for others who are suffering. (I'm aware that some people violently object to use of words like sufferers in association with autism but I personally am suffering because I have it). There is an underlying problem with communication and imagination that autism gives us alongside all of the other tics, foibles and traits that come along for the ride. If you spot the pattern of traits then it tends to suggest that you have the underlying diagnosable issues. I suspect that the OP's child has the underlying issues but the OP, reasonably, struggles with the logical step from "has traits" to "has autism". The traits can be an indicator that suggest due investigation and that is what might benefit the child.

    The second is that we are systematically not good at explaining ourselves and negotiating and seeing other people's point of view. This leads to frequent violent disagreements on this forum and I absolutely don't want you to feel antagonised or alienated by what I have said.

    We are all struggling with working out how to deal with it but I hope the OP (and us two too) are learning as we go.

Children
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