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
  • Thank you. I was just a bit puzzled as to how you could be so certain.

    I think that Pentadactyl sums up extremely well, and I think that you would do well to take note.

    Interestingly, one aspect of AS that has many of us ranting at times is that despite our best efforts, we can never get anyone to listen to us properly. There is a body of strong belief that AS is genetic. I've posted myself, as have others, my deep belief that one of my parents was also AS, and I have evidence that other family members were also affected, both my and our parents' generation. Indeed, this was the subject of some discussion during my own diagnostic assessment.

    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. It is for this reason that I, personaly, strongly object to the use of 'high' or 'low' function. Our functionality depends very much on our individual traits, and how they are being stimulated at any particular time. It's a movable feast.

    I don't mean to be rude or offensive, so please don't think I am being when I'm just trying to help, but you are not qualified to say whether anyone is on the spectrum or not. Knowing some AS people does not give you a studied insight into the condition, whereas your insistence that it does is indicative of an AS trait. If, despite your lack of knowledge, you still insist that neither you nor your child is on the spectrum, 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 fail to understand what kind of help you would expect from people who have direct experience of the condition, when none of us know you and for certain, none of us are qualified to offer an opinion or diagnosis. 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.

    It is obvious to me that you love your child very much, and I cannot for the life of me understand why you would be so afraid of an AS diagnosis. It isn't mental illness, we are incredibly talented people, and we try to be kind and helpful, but we always speak the truth with brutal honesty, I'm told. For my part I see nothing to fear from truth and honesty. If you find my post brutaly honest, but then think that it's personal, you really don't understand AS at all, despite your 'contacts' with it. We can only offer our opinions, we have no agenda, and truthfuly, your choices and their consequences are yours alone to make and to live with, including any unintended harmful effects on your daughter.

    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.

    Every parent in the world has the most perfect and intelligent child that's ever been born. In the real world, I urge you to follow Pentadactyl's very good advice, for both your sakes.

Reply
  • Thank you. I was just a bit puzzled as to how you could be so certain.

    I think that Pentadactyl sums up extremely well, and I think that you would do well to take note.

    Interestingly, one aspect of AS that has many of us ranting at times is that despite our best efforts, we can never get anyone to listen to us properly. There is a body of strong belief that AS is genetic. I've posted myself, as have others, my deep belief that one of my parents was also AS, and I have evidence that other family members were also affected, both my and our parents' generation. Indeed, this was the subject of some discussion during my own diagnostic assessment.

    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. It is for this reason that I, personaly, strongly object to the use of 'high' or 'low' function. Our functionality depends very much on our individual traits, and how they are being stimulated at any particular time. It's a movable feast.

    I don't mean to be rude or offensive, so please don't think I am being when I'm just trying to help, but you are not qualified to say whether anyone is on the spectrum or not. Knowing some AS people does not give you a studied insight into the condition, whereas your insistence that it does is indicative of an AS trait. If, despite your lack of knowledge, you still insist that neither you nor your child is on the spectrum, 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 fail to understand what kind of help you would expect from people who have direct experience of the condition, when none of us know you and for certain, none of us are qualified to offer an opinion or diagnosis. 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.

    It is obvious to me that you love your child very much, and I cannot for the life of me understand why you would be so afraid of an AS diagnosis. It isn't mental illness, we are incredibly talented people, and we try to be kind and helpful, but we always speak the truth with brutal honesty, I'm told. For my part I see nothing to fear from truth and honesty. If you find my post brutaly honest, but then think that it's personal, you really don't understand AS at all, despite your 'contacts' with it. We can only offer our opinions, we have no agenda, and truthfuly, your choices and their consequences are yours alone to make and to live with, including any unintended harmful effects on your daughter.

    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.

    Every parent in the world has the most perfect and intelligent child that's ever been born. In the real world, I urge you to follow Pentadactyl's very good advice, for both your sakes.

Children
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