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

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
  • classic codger said:

    Your insistence that you are right and everyone else is wrong is also a typical AS behaviour. If I may pick you up on one small point, there is no such thing as 'opposite' ends of the spectrum, there is a range of traits and effects that apply to anyone on the spectrum. 

    *I don't think that everyone is wrong, I think that people are jumping to concusions and to desperate to label my child without first listening to her parents, daycare and other people who come into contact with her daily.

    Whats more worring about the spectrum point is that he pediatrician who seen nora used"opposite ends of the spectrum" when talking to us, but we already knew this as my partner is at uni studying psychology and counselling and they also use this phrase when talking about Autism.

     I am baffled as to why you would come onto an Autism website just to tell us that in your unqualified opinion, qualifed people who are trying their best to help you, are wrong.

    *I came on here as I thought there would of been people who would of been wrongly diagnosed or in the same possition where they themselves dont think their child has Autism and may of been able to help me.

    There are many parents on here that have diagnosed children, there are parents who struggle desperately to get the right help for their undiagnosed children, but you are the first person I've seen on here who has come just to tell us that your child cannot possibly be AS, because you know better than anyone. You may be denying your child the very help that she needs. I agree with Pentadactyl, blaming the 'operation' is convenient, but totaly misleading.

    *I know there are parents fighting to get their child diagnosed and that's because they think their child has Autism, and you support this as you think they know best  because they are the parent of that child, yet when I am saying I dont think my child has Autism you are saying leave it to the professionals, they know best? 


    why you would be so afraid of an AS diagnosis. 

    *I am not afraid of the diagnosis I am afraid of the miss diagnosis.

    I have asked an NT to review this before I post it. I'm told that in their opinion, you aren't likely to take any of it on board and that you'll just have a 'paddy' over it. This is someone who has known me, and known me very well, for a number of years and STILL doesn't always understand me. They are puzzled as to how you think that casual, non-intimate contact with AS people could possibly give you any depth of insight into the condition.

    *Presume much? Some of the information on this thread has been very helpful although nothing that would help educational wise for my daughter. People are complicated, not just those who are diagnosed with something. 

    I am not easily offended and like to see that people speak what they think is truth and give their oppinion and tell me of past experiences etc, but there is a difference between being truthful and being rude!

Reply
  • classic codger said:

    Your insistence that you are right and everyone else is wrong is also a typical AS behaviour. If I may pick you up on one small point, there is no such thing as 'opposite' ends of the spectrum, there is a range of traits and effects that apply to anyone on the spectrum. 

    *I don't think that everyone is wrong, I think that people are jumping to concusions and to desperate to label my child without first listening to her parents, daycare and other people who come into contact with her daily.

    Whats more worring about the spectrum point is that he pediatrician who seen nora used"opposite ends of the spectrum" when talking to us, but we already knew this as my partner is at uni studying psychology and counselling and they also use this phrase when talking about Autism.

     I am baffled as to why you would come onto an Autism website just to tell us that in your unqualified opinion, qualifed people who are trying their best to help you, are wrong.

    *I came on here as I thought there would of been people who would of been wrongly diagnosed or in the same possition where they themselves dont think their child has Autism and may of been able to help me.

    There are many parents on here that have diagnosed children, there are parents who struggle desperately to get the right help for their undiagnosed children, but you are the first person I've seen on here who has come just to tell us that your child cannot possibly be AS, because you know better than anyone. You may be denying your child the very help that she needs. I agree with Pentadactyl, blaming the 'operation' is convenient, but totaly misleading.

    *I know there are parents fighting to get their child diagnosed and that's because they think their child has Autism, and you support this as you think they know best  because they are the parent of that child, yet when I am saying I dont think my child has Autism you are saying leave it to the professionals, they know best? 


    why you would be so afraid of an AS diagnosis. 

    *I am not afraid of the diagnosis I am afraid of the miss diagnosis.

    I have asked an NT to review this before I post it. I'm told that in their opinion, you aren't likely to take any of it on board and that you'll just have a 'paddy' over it. This is someone who has known me, and known me very well, for a number of years and STILL doesn't always understand me. They are puzzled as to how you think that casual, non-intimate contact with AS people could possibly give you any depth of insight into the condition.

    *Presume much? Some of the information on this thread has been very helpful although nothing that would help educational wise for my daughter. People are complicated, not just those who are diagnosed with something. 

    I am not easily offended and like to see that people speak what they think is truth and give their oppinion and tell me of past experiences etc, but there is a difference between being truthful and being rude!

Children
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