How many wrong paths before correct diagnosis?

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My son, now 10, was diagnosed 2 years ago, but that was after many years of wrong turns and mis-directions. How could so many 'professionals' be so wrong? These teachers and doctors have told us everything from: emotional problems, to orthopedic problems to plain old 'bad parenting'.

I suspect that many other parents have gone done wrong paths before correctly identifying your child's real problem....am I right? What were you incorrectly told?

Here is a link that tells our family's story, if you are interested:
http://asdhelp.wordpress.com/2010/08/10 ... diagnosis/

I look forward to hearing your experiences.
Joanne

For the longest time I thought I had ADHD but it turns out it was Aspergers. I know they did not diagnose for Aspergers in 1975 when they classified me as learning disabled. They stuck me in special education classes and acording to my psychologist I never should have been in the classes in the first place so the misdiagnosis essentially cheated me out of a proper education and was ridiculed and beaten almost daily because I was in those classes. I think of all the help with job placement, scholarships, and grants I missed out on really burns my buns if I would have been diagnosed in the 90's instead of now when I am in my 40's.

My daughter was referred for testing at age 2 because she had no words. The state social worker said she was not autistic because she had joint attention. At age 4 she was again referred for eval due to social problems and anxiety and the Dev Pedi diagnosed her with Dev Coord Disorder, Anxiety Disorder and Sensory Proc Disorder. She then started OT. At age 5.5 she was again referred for eval due to continued anxiety and social issues and was diagnosed at age 6 with Asperger's. I am still having problems finding a competent clinical team that can understand her presentation. She now has mood swings, rages, and extreme anxiety. We have tried many meds, all with bad side effects. The Dev Pedi now wants to add diagnosis of BiPolar, which I am opposed to. I think if she was understood and supported at school her rages and anxiety would diminish.

Mama To Grace - I agree with you. Once your daughter's true issues are identified so that you can all understand and support her, I'm sure a lot of her 'behaviors' will improve. If nothing else, you hopefully be able to help her identify her emotions and deal with them better.
Good luck with your on-going search...I know how hard it is to know that there is 'something' but not be able to pinpoint it. But trust your instincts - the 'professionals' don't know your daughter as well as you do.

Todesking - My heart breaks for everything you had to endure. Hopefully now your understanding of yourself and the condition will provide you with some comfort and strategies to help. You can't control the past, but you can control how you respond to the future! Make the most of it!
Good luck to you!

My frustration is that every "professional" wants to medicate her. She doesn't do well with meds at all. She is extremely sensitive to chemicals and is doing much better now that she is on totally artificial dye & flavor free, preservative free and chemical additive free diet. I think a lot of our kids are extremely sensitive to chemicals including pharmaceutical meds. Their bodies just don't process them like typical bodies do.

My #1 fight is to get the school to add supports and mods to alleviate my daughter's social anxiety in the classroom. I feel once that is done properly she will be able to function quite well without meds-as long as the people surrounding her understand her and are not trying to turn her into a NT child. The more they see her behaviors and actions as "wrong" or "an emotional problem" the worse she gets. And these precious years are ticking away where she could be adapting and learning how to function in a way that is right for her.

My distaste for our public school system grows by the day!

They wanted to give me rittilen when I was in school so that it would give the teacher a break from my constant questioning. I was also very talkative due to my Aspergers. My father would not allow me to take the pills. His friend at work had a kid that had adhd and they put him on rittilen and he became a zombie. My dad said he would go over to their house and the child was good at conversing with adults then after the pills he was only giving short sentances and became boring. He did not want this for me, as weird and shy as I was, I was still was intresting to talk to he did not want to take that away from me.



My parents said I picked up a lot of odd behavior from the other kids who were in special education classes. If I was put into mainstream classes I would have learned more normal reactions. By the time the school listened to my parents it was to late. When the school allowed me to take art classes with normal students the weird behavior had become normal for me and the normal students picked up on it and made my life a living hell in the class. All I learned from the so called normal students was to keep my head down and my mouth shut. I also learned adults will be no help once they start in on me.

My public school experiences have made me a jaded, angry, vengeful, and mistrusting adult. Nothing good came from my exposure to NT children and their twisted ways.

I clocked up 14 years of being told it was down to bad parenting and lack of attention. Moved to another country and within months of asking for help, yet again, she had her diagnosis.

I'm still getting diagnosed! So far, people have said I have ADD/ADHD, Asperger's, Borderline Personality Disorder, PDD-NOS, a diagnosis that I wouldn't prefer to put up there, anxiety, GAD, and Avoidant Personality Disorder, but it usually takes a while to get diagnosed. Oh, and why did they say he has orthopedic issues? Just wondering.

My son was referred to a speech therapist at two, and it took the next twelve years before he got his diagnoses.

Don't feel so bad. Mr daughter has never been in a Sp Ed class but everyone thinks she's "weird" already. This mindset is not deterred or discouraged by the teacher who think a little "tough love" never did anyone any harm.

I was concerned because my son persisted to 'toe-walk' and go up/down stairs with two feet on each step way passed the normal toddler stage. I talked to my pediatrician about it at every visit and then he said, "well, if you're concerned, you can take him to see an orthodepic dr. When my son was in 1st grade, I did and the ortho Dr. said he had very tight achilles tendons. He prescribed orthotic boots that my son wore every night for 2 years (to keep the foot flexed) but it didn't really help.

When I finally figured out the real diagnosis, we stopped the boots. The stair climbing did work itself out, but my son still toe walks sometimes. When I remind him "Big Feet", then he'll put his entire foot down. So, things are better but still not 'normal' if you know what I mean.

Reading the posts from all of you, I am amazed by all the mis-information...it is much worse than I expected. These 'professionals' really must get educated about AS...I guess awareness within the general public will help alot too.

Good luck everyone!
Joanne

This is very unfortunate. Ideally you need to get the teacher on board, because a smart teacher, that can explain things in a language the kids are able to understand, can not only stop the kids from harassing her, but can in fact get the other kids on her side. See this post for a real life example of how well that can work.

Yes, I read that post. Really that would be a dream. In our small town mindset they fear that would be illegal due to privacy issues.

My son was diagnosed with verbal apraxia at age two, sensory integration disorder at age five, learning disabilities at age six , possible ADD at age seven and finally high functioning autism at age eight. We just started to connect all of the dots!

The first psychologist I went to told me he did not like putting labels on people. I told him a label would get me help with finding a job, get grants for education, and help me with transportation. He then tells me with his help he will give me the tools to over come my problems and I will not need special help with anything. On my last session with me I walked out on him and he kept saying excuse me trying to get my attention as I was walking out so I told him to eat a bowl of s**t. For the first time an insult felt so right to say.

You will have to go through several doctors before you find one that knows their stuff. The second one I met knew I had Aspergers from the first interview with him. When I told him what the first psychologist told me he laughed and told me there is no drug or treatment that can fully cure what I have wrong with me.