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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

  • NAS6505 said:

    teachers, people in mental health and GPs for what to look for, they use this single list of symptoms, if the same scenario played out 30 yrs ago the teacher wouldn't bat an eye, today the DSM tells them what to think, the DSM tells them what is considered odd or strange or in their words "atypical".  Atypical to them, and I do not quote,  walking with an odd gait, moving their arms in a strange way,  shyness, daydreaming, problems focusing, high interest in a partucular subject matter, etc are all signs to look out for, they all mean a disorder is present.  Carrying around a blanket or pillow is ok, but anything else is not ok, having a heavy interest in friends is ok but a heavy interest in dinosaurs or trains is not ok.

    If I can jump in?

    I am no expert. Not by a long shot. I also don't know your child. But I will say that I fully understand your point of view.

    I used to think that I had some traits similar to those displayed by people with autism, but I was NOT on the autism spectrum. I saw autism as a 'thing' and was so against labels that I would not have classed myself as having autism.

    My opinion was strongly that "anyone who's a little bit different/unusual gets diagnosed with something", and that such a desperation for a label was absolutely ridiculous. I, too, would have thrown around words like "overdiagnosed" and "everyone wants a label".

    We're now years down the line and I now label as having self-diagnosed Asperger's. What's changed? I've realised that autism isn't a thing.

    You say above that "just because someone has this trait, and this trait, and this trait, they're labelled as having autism when they might not". But the point is that autism is a word that specifically covers that collection of traits. Autism isn't a 'thing' of its own - it's simply a name, a label, given to people with that selection of traits.

    You're absolutely right that in the past it would have just been seen as being "a bit different" and now it's labelled as "autism", but that doesn't mean that people in the past did not have the traits associate with autism. It just means that they weren't put together under the umbrella of autism and given the name and label.

    The more I have learned, the more I've discovered that in my mind there is no doubt that I'm on the autistic spectrum. Nobody would know it to look at me - some of the traits I don't have, others I hide well - and undoubtedly I just come across as a little bit different, a bit shy, a bit antisocial, a bit lazy, but the point is that the traits that cause people to see these parts of me are under the autistic spectrum and I fit very well into it. Exact things like, as you put it, "walking with an odd gait, moving arms in a strange way, shyness, daydreaming, problems focusing, high interest in a particular subject matter". Autism is just a name, a label, for those 'issues' so that people can learn to better deal with them.

    Trust me, years ago I would be the first to look at a list of traits and go "I hate labels. I don't have autism, I just have...", but accepting that I do fit the autistic spectrum recently has only been a positive thing for me. It doesn't change me or any of the traits that I've always shown, it just provides me with a better understanding of myself and access to communities and information that I would otherwise not have accessed.

Reply

  • NAS6505 said:

    teachers, people in mental health and GPs for what to look for, they use this single list of symptoms, if the same scenario played out 30 yrs ago the teacher wouldn't bat an eye, today the DSM tells them what to think, the DSM tells them what is considered odd or strange or in their words "atypical".  Atypical to them, and I do not quote,  walking with an odd gait, moving their arms in a strange way,  shyness, daydreaming, problems focusing, high interest in a partucular subject matter, etc are all signs to look out for, they all mean a disorder is present.  Carrying around a blanket or pillow is ok, but anything else is not ok, having a heavy interest in friends is ok but a heavy interest in dinosaurs or trains is not ok.

    If I can jump in?

    I am no expert. Not by a long shot. I also don't know your child. But I will say that I fully understand your point of view.

    I used to think that I had some traits similar to those displayed by people with autism, but I was NOT on the autism spectrum. I saw autism as a 'thing' and was so against labels that I would not have classed myself as having autism.

    My opinion was strongly that "anyone who's a little bit different/unusual gets diagnosed with something", and that such a desperation for a label was absolutely ridiculous. I, too, would have thrown around words like "overdiagnosed" and "everyone wants a label".

    We're now years down the line and I now label as having self-diagnosed Asperger's. What's changed? I've realised that autism isn't a thing.

    You say above that "just because someone has this trait, and this trait, and this trait, they're labelled as having autism when they might not". But the point is that autism is a word that specifically covers that collection of traits. Autism isn't a 'thing' of its own - it's simply a name, a label, given to people with that selection of traits.

    You're absolutely right that in the past it would have just been seen as being "a bit different" and now it's labelled as "autism", but that doesn't mean that people in the past did not have the traits associate with autism. It just means that they weren't put together under the umbrella of autism and given the name and label.

    The more I have learned, the more I've discovered that in my mind there is no doubt that I'm on the autistic spectrum. Nobody would know it to look at me - some of the traits I don't have, others I hide well - and undoubtedly I just come across as a little bit different, a bit shy, a bit antisocial, a bit lazy, but the point is that the traits that cause people to see these parts of me are under the autistic spectrum and I fit very well into it. Exact things like, as you put it, "walking with an odd gait, moving arms in a strange way, shyness, daydreaming, problems focusing, high interest in a particular subject matter". Autism is just a name, a label, for those 'issues' so that people can learn to better deal with them.

    Trust me, years ago I would be the first to look at a list of traits and go "I hate labels. I don't have autism, I just have...", but accepting that I do fit the autistic spectrum recently has only been a positive thing for me. It doesn't change me or any of the traits that I've always shown, it just provides me with a better understanding of myself and access to communities and information that I would otherwise not have accessed.

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