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equinn
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25 Jan 2008, 4:59 pm

Anyone ever feel like your child is misdiagnosed and doesn't really have an autism disorder?

It would help if I knew other kids and parents with similar issues. It's lonely.

equinn



asplanet
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25 Jan 2008, 5:12 pm

Hi, I have 2 boys age 9 and 14, the 14 year old has just been diagnosed with Non verbal Learning disorder, not sure if correct diagnosis yet, but can be a long process. My younger child does have traits, but having no problems as yet, so have not even started process... I was diagnosed with aspergers July 2007 myself.

I think its helps that I have myself, so easier for me to understand my children, no I have no doubts and feel its about time others stop trying to get our children to conform and let them be who they are. Thats why I'm helping to educate society that there is in fact a whole group of people who are just different.

The problem is when you do not known of any other Aspie people around you, other NTs will start to doubt that your child is on the spectrum, which makes you rethink and not wanting to feel the outsider you start to want to conform to there ways as well.

But the way I se it is in fact our 'symptoms' are in fact ourselves, and quite often the so-called 'normal' world underestimate and even despise, but often do not try to understand. We have been made to believe in a stereotype of 'normality' for our children, and to panic, fear and react when our offspring don't achieve. Far to often its the associated conditions we need help with, but the NT's continue to blame our Autism Spectrum Disorders for everything!

Education and awareness really is key to a better society where we can help eliminate, as much as possible the prejudgment and stigma before it happens.


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25 Jan 2008, 5:18 pm

Yep!
I know exactly how you feel. On his own it would take an experienced eye to see J's differences. Mix him with other kids or take him some where different, thats when it stares you in the face.

I have to say equinn, alot of what you write about your child sounds just like my J. I also have to say I have noticed that when I talk about J with my friends with NT kids, they all say yeah my kid does that to,to at least one of J's issues. I think each odd(for want of a better word) thing that J does, most NT kids do at some time, the only difference is they do it one at a time randomly J does all those odd things all the time (or much more often anyways). Sometimes when people say yeah my kid does that, about NT kids I feel like a fraud, I feel like hey they dont believe me, sometimes I get angry sometimes I get sad. Mostly Im frustrated.
I have a friend with an autistic daughter who has much bigger issues than J. I get these same feelings from her, I know she doesn't mean it but she makes me feel like "stop complaining you should feel grateful" dont get me wrong I'm not complaining just asking her something I am grateful I know her lot is harder than mine. But its hard to know where we fit, if even the autistic people we know are judging J because of his abilities and the NT because of his lack of abilities.
I'm waffling sorry this was your post. I do know how you feel.



gbollard
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25 Jan 2008, 6:03 pm

Paediatricians need to put kids into boxes but there's only a limited number of boxes - so they have to make a judgment based on one or two short visits and/or surveys.

Are you upset because he's not normal?
or
Are you upset because you think he should have a worse label?


It's normal to go through a period of denial at first. The way I see it is that if they're diagnosed with something they'll get assistance. They don't have to live up to the label and you don't have to send them to special schools - but any assistance is worthwhile.

Depending on the age, you can afford to wait before challenging a diagnosis.



equinn
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25 Jan 2008, 7:06 pm

I guess it bothers me to say he has a label. It seems that too many kids are being diagnosed with autism. Some, are even nonverbal and have Aspergers--it's all way too subjective and muddled. At this point, he thinks he has aspergers and talks about it periodically, especially when he's afraid of things--he attributes it to his aspergers.

I do agree that kids should just be accepted as is. The problem is my son needs repeated redirectives to do his work. But, maybe he has become accustomed to this type of intervention--what if it is a self-fulfilling prophesy? Maybe I should have pulled him from Kindergarten, let him wait it out a year and then put him in at age seven? Wouldn't it be obvious if he had a life-long disorder such as Aspergers/autism?

What if he just got off to a bad start?



gbollard
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25 Jan 2008, 7:45 pm

It's often not obvious if a child has a disorder like aspergers or high functioning autism (HFA).

In fact, we have friends who have talked to schools and doctors etc because they thought they had a child prodigy. They were devastated and disbelieving when instead of being told what they wanted to hear, the child got a HFA diagnosis.

I remember my wife being upset because these people who had a "prodigy" were getting assistance for their child while our (then undiagnosed son) with poor reading etc was not.

There are a lot of labels around but it doesn't matter which label you apply. I got special treatment at school myself because I was a bit deaf. I didn't discover my aspergers until I was 35. The special treatment paid off anyway.

There's no point in restarting kindergarten, though we all go through that phase when we get the diagnosis. Next year will be better but this year will be very hard for you and your family.

Re: Self Fulfilling Prophecies: The Remedial factor can cause harm - so keep an eye on it. Insist that the remedial classes take place during an off-subject (possibly religion) rather than during English or Maths.



equinn
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25 Jan 2008, 8:06 pm

QUOTE: Re: Self Fulfilling Prophecies: The Remedial factor can cause harm - so keep an eye on it. Insist that the remedial classes take place during an off-subject (possibly religion) rather than during English or Maths.


He doesn't get any remediation. He has breaks if necessary. They try to teach him how to self-regulate so he can realize when he needs to take a break.

He is mainstreamed for more than 90% of day.

He is not a prodigy. I don't think his AS/hfa is noticeable or obvious (but I could be desensitized). People did think he was extremely bright from the time he was small. He and I heard it quite a bit. I had it in my mind that he was gifted and this was the cause of his troubles in kindergarten. To my dismay, I learned that it had to be something to make him act so off, so atypicaly and so it was a behavior problem, a conduct issue that needed to be corrected. After all, he was too smart and should know better than to roll around on the floor, rip his socks and shoes off when he should have been lining up to go home. I didn't realize at the time he was repeating a pattern of behavior due to his autism. He would run from the room or around the room because of his autism. Why didn't anyone else suspect an ASD? I can't get over this. When it was brought up, it was dismissed because he sought out, recirprocally, attention from kids and adults---
BUT it was one-sided. It iinfuriates me, really. Then a later evaluation by school, supported prior evaluation (which it always does) and he was said to have probably ADHD with anxiety despite the prior evaluations/observations that dismissed ADHD.

It has been a rocky road. Finally, his IEE was accepted by team. He now has "autism" as an ed. label and receives services such as social skills once a week, redirection, (no speech or OT), extended time and special accomodations for testing, front row seating--and the rest. It sickens me that I had to fight to get someone to open their eyes. They felt it didn't matter, it wasn't obvious enough--I just don't know. He was said to be too with it. Maybe he is? How would I know--I don't know anyone with aspergers (I don't think).

I just want him to have as normal a school life as possible with more tolerance and more accomodating of his quirkiness without this "disabled" thing hanging over his head.

He begins a new school next week, new team. I have to fax his IEP. They want it right away. I hate to do this. They can't wait to get their hands on it.

All his reports will go to this new school, follow him like baggage. It's very depressing to me. It seems so unfair for him.

equinn



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26 Jan 2008, 6:37 am

some days i look at my son, and i wonder if he's the way he is just because of all the bullying that was done to him.....and then other days, i look at my son and think how did we not notice all his misperceptions about social situations ?



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26 Jan 2008, 4:46 pm

I often have doubts about my MMR son, but not my AS daughter. I knew she was AS WAY before we had a dx. But my MMR son just seems so damn smart sometimes and quick to pick up things- that interest him. But then I bang my head against the wall in teaching him how to read, his numbers, etc and see how badly he's doing in school and I know the dx is right.



gbollard
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26 Jan 2008, 5:13 pm

In Australia, kids with diagnosed conditions get assistance - the school gets money for them.

You need to make sure that the help is getting to him.

I'd probably recommend speech even if his speech itself is good - they could work on his conversational skills, rather than on words.

OT - sometimes this is good, sometimes not - depends on the teacher.



equinn
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26 Jan 2008, 7:03 pm

"I often have doubts about my MMR son, but not my AS daughter. I knew she was AS WAY before we had a dx. But my MMR son just seems so damn smart sometimes and quick to pick up things- that interest him."
QUOTE

Interesting--he seemed to be on the spectrum from previous posts-sensory issues, problems with pronouns, flapping hands--lots of spectrumiish behaviors, so what was the reason given for excluding an autistic spectrum disorder?

Most recently, I was told that many kids with spectrum behaviors that appeared to be lower functioning were given a diagnosis of pdd-nos rather than an MMR diagnosis. I think I'd take this diagnosis instead. I don't like that MMR at such a young age. What if he performed poorly due to age, verbal difficulties--any number of reasons. It causes everyone, including parents, to lower their expectations of child! This was the stima associated with an autism diagnosis one upon a time.



Jennyfoo
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27 Jan 2008, 8:25 pm

The reason for the MMR dx is because he scored as developmentally delayed in ALL areas, not just language, etc. I still swear sometimes that he is on the spectrum, but the evaluator said no because he makes good eye contact and understands emotion- he could point out the happy face, the sad face, etc- and when he did the birthday party part of the ADOS, he displayed developmental age-appropriate imagination and creativity- he shared, etc. He is very sweet and social once he's comfortable in his surroundings and has a lot of friends in Kindergarden. My AS daughter was much the same way though- sweet and friendly. We can't base his behavior on genetics because he's adopted. If he were not adopted, I'd be sure he was on the spectrum due to the genetics involved and his behavior. He was born tox positive-exposed to drugs, so that may account for the MMR as well. The evaluator actually aid that as he gets older, he will probably fall more into the MR category as school gets more academic, etc.

He has a lot of sensory issues. He is very sensory seeking. There are a lot of conditions concurrent with MMR that would explain his sensory-seeking behaviors, etc such as Fragile X. We are not planning on doing the genetic testing to see what caused the MMR yet though. Perhaps when he is older, when he gets married and wants to have children, he can have that done.



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28 Jan 2008, 11:22 am

I used to go back and forth on this. In my mind, I'd convince myself that there's nothing different about my child because he has many moments when he's a typical child. However, I have to look at the whole picture. He's homeschooled because he can't function in public school in any typical way.

I do consider us lucky though. He is high functioning and loving. I figure one day he'll move around in the world and find a way to live independently. We just have a lot of work to do to make that happen.



laplantain
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28 Jan 2008, 2:21 pm

I do have doubts now, doubts about what ASD is more than whether or not my son actually had it. Because at the time of his dx, he had so many behaviors that were classic ASD. But now I'm starting to wonder what the label actually means.

There is a boy in my son's class who is hfa. It is obvious to the average person on the street that he has delays- his speech is garbled, he does a lot of repetitive movements, and he thrashes and runs around a lot. But we've had playdates with him where he will look at me and say "hi", and he will also say, "Come on, N, follow me!" when they are playing. They will run around and chase each other around the house and have lots of interactions which supposedly he is not able to have.

Now when they are at the park or at school, it is a different story- the other boy starts out okay but shuts down and goes off by himself after a very short time. But when they are in a comfortable environment like his or our home, he is absolutely great and very friendly. So what does that label really mean for him?

For our son, most people have no idea that he has a label at all. Not only because he is VERY verbal, but also because he is very cautious around other people and will not do very much but sit and listen when we are with people he doesn't know very well. The typical comment I get everywhere from store clerks, etc, is "He is soooo gooood! He is always so well behaved when he comes in here!" He just plops himself on the floor while I shop and hums to himself, or he sits in the grocery cart and talks about the foods on the shelves.



gbollard
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28 Jan 2008, 3:09 pm

The whole thing is a spectrum, a bit like a line.

<----------------[--perfect Zone--]--------------->

Where the perfect Zone is a predefined area based on the ideas of a number of practitioners.

If it were a simple line, it would be easy to follow but it's really a star shaped system of traits in which the combined effects of each set of scores on the star result (plus, of course, environmental factors), result in a unique child..

What that means is that it's almost impossible to compare your child to another.



Mikomi
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28 Jan 2008, 8:37 pm

equinn wrote:
Anyone ever feel like your child is misdiagnosed and doesn't really have an autism disorder?

It would help if I knew other kids and parents with similar issues. It's lonely.

equinn


Yes. But something always reminds me shortly thereafter that my children are not neurotypical.