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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

  • I don't understand what you are asking for because in the first post you said the Pediatrician was not listening to what you were saying but concerned about the Autism. But you say how do you fight to have a diagnosis? Confused

    Please be aware that because some experience issues with some known symptoms not everyone with autism may experience that. I was diagnosed with Autism last year and the number of people who know about Autism who wait for me to shake hands - because some wont, I am finding harder that if those people who only heard about  thatAutistic trait, rather than getting to know what I may feel.  I really do vary with eye contact. I will make eye contact but sometimes I wont and I havne't worked out any logic to that. But please do not stereotype us all to having all the same symptoms-all the time even because we also experience Autism in our own unique way.

    All I know is that I am now 47 and last year just received Autism Diagnosis and was born with heart defect which had major surgery around 6 mont old then again around 8 year old to complete it. I didn't have to fight very hard for the Autism Diagnosis. But there again am sure events through life happend because of Autism wasn't thought of but wouldn't have been back then, being female and not severe. It was suggested to me by a Psychologist that may be Asperger's and Autism was the final result but I was warned not everyone who is referred receives the diagnosis they perhaps 'want'. She may be on the ASD Spectrum without it actually being Autism. 

    But first steps first you go to the GP and ask them about the procedure for refering for an assessment.

Reply

  • I don't understand what you are asking for because in the first post you said the Pediatrician was not listening to what you were saying but concerned about the Autism. But you say how do you fight to have a diagnosis? Confused

    Please be aware that because some experience issues with some known symptoms not everyone with autism may experience that. I was diagnosed with Autism last year and the number of people who know about Autism who wait for me to shake hands - because some wont, I am finding harder that if those people who only heard about  thatAutistic trait, rather than getting to know what I may feel.  I really do vary with eye contact. I will make eye contact but sometimes I wont and I havne't worked out any logic to that. But please do not stereotype us all to having all the same symptoms-all the time even because we also experience Autism in our own unique way.

    All I know is that I am now 47 and last year just received Autism Diagnosis and was born with heart defect which had major surgery around 6 mont old then again around 8 year old to complete it. I didn't have to fight very hard for the Autism Diagnosis. But there again am sure events through life happend because of Autism wasn't thought of but wouldn't have been back then, being female and not severe. It was suggested to me by a Psychologist that may be Asperger's and Autism was the final result but I was warned not everyone who is referred receives the diagnosis they perhaps 'want'. She may be on the ASD Spectrum without it actually being Autism. 

    But first steps first you go to the GP and ask them about the procedure for refering for an assessment.

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