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
  • Former Member
    Former Member

    4390evans said:

    If you still haven't seen what type of help I was asking for then I am wasting my time here, seen as I have repeated myself a few times! 

    I don't really care who or what NT is.

    God help if someone actually came on here and was at their wits end and desperatly needed help or a sympathetic ear! All apart from one person has in some way insulted or responded condescendingly towards me or assumed what I think! 

    From what it looks like on this thread it seems a bad thing not to have Autism and that it is wished on people! I guarantee non of your parents would of wished for you to have Autism, nor you for your childeren yet when I write replies you are so quick to look into another meaning of what I write and say oooh thats a sign of Aspergers or Autism instead of just focusing on what the original post was about. 

    Im very suprised Ive had this bother to be honest, and dont think I will be asking or taking part in anything else on this so called charitable site.

    We don't mean to be rude but one part of autism is that we are not very diplomatic and not good at understanding other people. That is why we are here, we are generally trying to get help with the problems that autism gives us. Being sympathetic is also something we struggle with as we are fairly hopeless at judging people's emotions. This forum is definitely not teaandsympathy.com!

    Your question runs against a frequent problem of parents and people with autism. It is generally very very difficult to get a diagnosis. People have to jump through all sorts of hoops and delays and trauma before they get to a diagnosis.

    Most people here know that they, or a child, have autism and we generally have no choice but to accept this and make the most of it. It is not the end of the world or a terrible thing for us. It just has to be part of our lives.

    We can't tell if your child has autism and with no disrespect I doubt if you can either. Autism is very difficult to diagnose and one autistic person does not resemble another one. If you know someone with autism then another person with autism may be completely different. The best people to work this out are the experts. Experts do, however, get fixed ideas sometimes and diagnosis of conditions like autism can sometimes be wrong. I think you should challenge them (politely) and ask them for details about why they think it is autism and how your child might have come to have the condition. Ask them what difference it will make to treatment. 

    There are procedures for asking for second opinions in the NHS. You aren't stuck with this diagnosis and only time will tell whether the diagnosis is right. If autism is the right diagnosis then this will mean extra help from the right people. If it is the wrong diagnosis then you might find that the same people are involved in trying to help him. 

Reply
  • Former Member
    Former Member

    4390evans said:

    If you still haven't seen what type of help I was asking for then I am wasting my time here, seen as I have repeated myself a few times! 

    I don't really care who or what NT is.

    God help if someone actually came on here and was at their wits end and desperatly needed help or a sympathetic ear! All apart from one person has in some way insulted or responded condescendingly towards me or assumed what I think! 

    From what it looks like on this thread it seems a bad thing not to have Autism and that it is wished on people! I guarantee non of your parents would of wished for you to have Autism, nor you for your childeren yet when I write replies you are so quick to look into another meaning of what I write and say oooh thats a sign of Aspergers or Autism instead of just focusing on what the original post was about. 

    Im very suprised Ive had this bother to be honest, and dont think I will be asking or taking part in anything else on this so called charitable site.

    We don't mean to be rude but one part of autism is that we are not very diplomatic and not good at understanding other people. That is why we are here, we are generally trying to get help with the problems that autism gives us. Being sympathetic is also something we struggle with as we are fairly hopeless at judging people's emotions. This forum is definitely not teaandsympathy.com!

    Your question runs against a frequent problem of parents and people with autism. It is generally very very difficult to get a diagnosis. People have to jump through all sorts of hoops and delays and trauma before they get to a diagnosis.

    Most people here know that they, or a child, have autism and we generally have no choice but to accept this and make the most of it. It is not the end of the world or a terrible thing for us. It just has to be part of our lives.

    We can't tell if your child has autism and with no disrespect I doubt if you can either. Autism is very difficult to diagnose and one autistic person does not resemble another one. If you know someone with autism then another person with autism may be completely different. The best people to work this out are the experts. Experts do, however, get fixed ideas sometimes and diagnosis of conditions like autism can sometimes be wrong. I think you should challenge them (politely) and ask them for details about why they think it is autism and how your child might have come to have the condition. Ask them what difference it will make to treatment. 

    There are procedures for asking for second opinions in the NHS. You aren't stuck with this diagnosis and only time will tell whether the diagnosis is right. If autism is the right diagnosis then this will mean extra help from the right people. If it is the wrong diagnosis then you might find that the same people are involved in trying to help him. 

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