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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

    classic codger said:

    Generally speaking, when someone new comes along I try to spot them, welcome them and offer whatever I can. OK, this isn't always well received, but I can't predict how anyone might react, so I don't worry about it, and if someone gets vicious and nasty at me, I just think that they didn't read me right in the first place. If I'm happy that what I've written is in no way personal (I think that our regular readers know when I'm being personal, but never to newcomers...) then I laugh with bitter irony at the stupidity of those, I call them 'morons', who think I have been.

    However, I do get upset when it happens, sometimes for days, and I wonder sometimes if it's worth me paying that price when I'm just trying to help in the best way I can. I might be crap at it, I can't tell, but considering the number of times that I've had a simple 'thank you', I don't think I can be all that bad, and it's the thought that someone feels better because of our help and support that keeps me going.

    CC, in my opinion, there's little value in feeling anger or being upset - it only hurts yourself (this is the lesson I learned from being given a book an anger management). It's better to try and work out what happened and see if you can avoid or resolve the conflict next time. We are bad at communicating and seeing things from others' point of view. We are bad at identifying when we should make a diplomatic move towards reconciliation. If the other person doesn't understand what you are saying then it might be lack of imagination on either side or lack of common understanding (I think the word for this is hermeneutics) on either side. Sometimes the things we say help, and by the way your contributions really do show that you really understand the situation that we are in. Sometimes our contributions miss the mark because the other person needs more evidence or because we have the wrong end of the stick. Perhaps sometimes we really struggle to imagine how an NT person might be feeling in a situation such as this?

    For the OP's benefit, we talk about NT meaning NeuroTypical which is a shorthand for non-autistic 'normal' people (actually there is as much variety amongst NT people as there is amongs autistic people but that's the subject for another thread entirely.)

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  • Former Member
    Former Member

    classic codger said:

    Generally speaking, when someone new comes along I try to spot them, welcome them and offer whatever I can. OK, this isn't always well received, but I can't predict how anyone might react, so I don't worry about it, and if someone gets vicious and nasty at me, I just think that they didn't read me right in the first place. If I'm happy that what I've written is in no way personal (I think that our regular readers know when I'm being personal, but never to newcomers...) then I laugh with bitter irony at the stupidity of those, I call them 'morons', who think I have been.

    However, I do get upset when it happens, sometimes for days, and I wonder sometimes if it's worth me paying that price when I'm just trying to help in the best way I can. I might be crap at it, I can't tell, but considering the number of times that I've had a simple 'thank you', I don't think I can be all that bad, and it's the thought that someone feels better because of our help and support that keeps me going.

    CC, in my opinion, there's little value in feeling anger or being upset - it only hurts yourself (this is the lesson I learned from being given a book an anger management). It's better to try and work out what happened and see if you can avoid or resolve the conflict next time. We are bad at communicating and seeing things from others' point of view. We are bad at identifying when we should make a diplomatic move towards reconciliation. If the other person doesn't understand what you are saying then it might be lack of imagination on either side or lack of common understanding (I think the word for this is hermeneutics) on either side. Sometimes the things we say help, and by the way your contributions really do show that you really understand the situation that we are in. Sometimes our contributions miss the mark because the other person needs more evidence or because we have the wrong end of the stick. Perhaps sometimes we really struggle to imagine how an NT person might be feeling in a situation such as this?

    For the OP's benefit, we talk about NT meaning NeuroTypical which is a shorthand for non-autistic 'normal' people (actually there is as much variety amongst NT people as there is amongs autistic people but that's the subject for another thread entirely.)

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