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
  • I do not think a diagnosis of autism is terrible, as I've stated many kids do have it and benefit from assistance or therapy, but we have to make sure they truly have it first.  Just observing and looking at what they do isn't enough as there can also be medical reasons for why they do what they do.  I'm simply advocating for dotting all I's and crossing all Ts.  Making a medical diagnosis based on what you see someone do is what was done in the dark ages before doctors knew enough and tests were available, it shouldnt be the sole single criteria for any kind of problem or disability in 2016 without exploring every possibility.  I would say the same thing for any disability or illness that is based only on observational diagnosis, not just autism, I have nothing against it but I do have something against jumping to conclusions especially when it is something that affects this child for a lifetime, not just until 12th grade. 

    As for the teacher, yes I get the whole thing of where they have many kids they've seen in class and can spot out a child having difficulties.....again we have to go back to the DSM, the DSM dictates for 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.  There are 7 pages of this.  It doesn't come down to the teacher being able to spot something it comes down to the DSM telling her what to spot, once the teacher brings this up it gets the ball rolling for an IEPa nd evaluation, parents usually get concerned to hear this and sign the papers to have an evlauation done, CARS2 of course is done, it's part of the evaluation BUT CARS2 is done only for those with high functioning autism so like I mentioned earlier the percentage of kids who come out of this evaluation deemed no disorder are very low, the CARS2 works against them, no one can ever take this test for autism and pass it with a normal score.

    As for me sounding bitter, well, it's been five years of going back and forth with the school, being almost harassed with multiple phone calls and e-mails per day, yanking my son out of class to give him mass amounts of testing taht include him doing jumping jacks and balancing on one foot, one teacher who felt he had a disorder because she didn't like the way he held his scissors at 5 years old, one IEP meeting where it was suggested he had issues because he has no brothers and sisters and never attended pre school, a school who has ignored the fact that he's been physically hit by other kids and coming home with bruises yet they feel his fear of other kids touching him is from a sensory processing disorder (gee getting punched and hit in the crotch with a lunchbox might have something to do with that-where's THAT kid's IEP?), they were also told he has upper airwway obstruction with snoring arousals which cause him to be fatigued in school giving him trouble focusing which they ignored, his teacher told them he lies on the ground in class having a tantrum but when we got her into the meeting she admitted he was only lying on thr carpet in the reading area reading a magazine, she told them he spit on other student but at the meeting admitted he wasn't. 

    Today I was notified of my legal rights and what attorneys I can use because I'm being taken to a due process hearing.  Fact is, they are not considering medical issues, in their mind the DSM rules and what the DSM says also goes.  They all use this across the country, it's the same list for everyone no matter what.  Anyone of any age is diagnosed based on this, and it is often changed and tweeked, if someone is considered to have autism 2 yrs ago the new one might then tell them they no longer have it.    I simply urge people who do their research with an open mind, look at the studies done, evaluate what medical conditions can mimic autism, look into a differential diagnosis BUT if they do not seem to have a medical issues going on them maybe they do have it.  I refuse to sit there and not question what else the problem could be and just go with the flow.  Just because they don't act like all the other kids in class does not equate to a disorder every single time.  I can't help if I sound bitter, I'm not, I'm a parent who is advocating for their child and is being almost harassed by the school to the point of being taken to court, after 5 years of this back & forth you tend to get very tired.  Especially when his every move is analyzed.  If you were able to see his IEP evaluation report and what they deemed a disorder you would see what I'm talking about. 

    Of course people won't like what I say, of course it makes me sound bitter or in denial, I'm not going with the grain-that's not typical.  What also isn't typical is for a school to pick on how a child moves their feet when they walk or if their voice is high pitched-it's not my problem he hasn't hit puberty yet, he sounds nasal when he talks-because it was already determined his adenoids need to come out, they dismissed it.  It is a long tiresome ride, trust me. 

Reply
  • I do not think a diagnosis of autism is terrible, as I've stated many kids do have it and benefit from assistance or therapy, but we have to make sure they truly have it first.  Just observing and looking at what they do isn't enough as there can also be medical reasons for why they do what they do.  I'm simply advocating for dotting all I's and crossing all Ts.  Making a medical diagnosis based on what you see someone do is what was done in the dark ages before doctors knew enough and tests were available, it shouldnt be the sole single criteria for any kind of problem or disability in 2016 without exploring every possibility.  I would say the same thing for any disability or illness that is based only on observational diagnosis, not just autism, I have nothing against it but I do have something against jumping to conclusions especially when it is something that affects this child for a lifetime, not just until 12th grade. 

    As for the teacher, yes I get the whole thing of where they have many kids they've seen in class and can spot out a child having difficulties.....again we have to go back to the DSM, the DSM dictates for 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.  There are 7 pages of this.  It doesn't come down to the teacher being able to spot something it comes down to the DSM telling her what to spot, once the teacher brings this up it gets the ball rolling for an IEPa nd evaluation, parents usually get concerned to hear this and sign the papers to have an evlauation done, CARS2 of course is done, it's part of the evaluation BUT CARS2 is done only for those with high functioning autism so like I mentioned earlier the percentage of kids who come out of this evaluation deemed no disorder are very low, the CARS2 works against them, no one can ever take this test for autism and pass it with a normal score.

    As for me sounding bitter, well, it's been five years of going back and forth with the school, being almost harassed with multiple phone calls and e-mails per day, yanking my son out of class to give him mass amounts of testing taht include him doing jumping jacks and balancing on one foot, one teacher who felt he had a disorder because she didn't like the way he held his scissors at 5 years old, one IEP meeting where it was suggested he had issues because he has no brothers and sisters and never attended pre school, a school who has ignored the fact that he's been physically hit by other kids and coming home with bruises yet they feel his fear of other kids touching him is from a sensory processing disorder (gee getting punched and hit in the crotch with a lunchbox might have something to do with that-where's THAT kid's IEP?), they were also told he has upper airwway obstruction with snoring arousals which cause him to be fatigued in school giving him trouble focusing which they ignored, his teacher told them he lies on the ground in class having a tantrum but when we got her into the meeting she admitted he was only lying on thr carpet in the reading area reading a magazine, she told them he spit on other student but at the meeting admitted he wasn't. 

    Today I was notified of my legal rights and what attorneys I can use because I'm being taken to a due process hearing.  Fact is, they are not considering medical issues, in their mind the DSM rules and what the DSM says also goes.  They all use this across the country, it's the same list for everyone no matter what.  Anyone of any age is diagnosed based on this, and it is often changed and tweeked, if someone is considered to have autism 2 yrs ago the new one might then tell them they no longer have it.    I simply urge people who do their research with an open mind, look at the studies done, evaluate what medical conditions can mimic autism, look into a differential diagnosis BUT if they do not seem to have a medical issues going on them maybe they do have it.  I refuse to sit there and not question what else the problem could be and just go with the flow.  Just because they don't act like all the other kids in class does not equate to a disorder every single time.  I can't help if I sound bitter, I'm not, I'm a parent who is advocating for their child and is being almost harassed by the school to the point of being taken to court, after 5 years of this back & forth you tend to get very tired.  Especially when his every move is analyzed.  If you were able to see his IEP evaluation report and what they deemed a disorder you would see what I'm talking about. 

    Of course people won't like what I say, of course it makes me sound bitter or in denial, I'm not going with the grain-that's not typical.  What also isn't typical is for a school to pick on how a child moves their feet when they walk or if their voice is high pitched-it's not my problem he hasn't hit puberty yet, he sounds nasal when he talks-because it was already determined his adenoids need to come out, they dismissed it.  It is a long tiresome ride, trust me. 

Children
No Data