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How to know if we really need a diagnosis?

Submitted by an LD OnLine user on

Our pediatrician told us a year ago that we should get our then 10yod tested for Asperger Sydrome. At the time it was because she wouldn’t look at him when he spoke with her or when she answered. She does this quite a bit, but more so when she is nervous or excited. Anyway, he wanted us to observe her ourselves first and then see what we thought in terms of her social behavior. SO we watched and studied about Aspergers and decided to get some testing done.

Last fall, we went to a hearing/learning center because we were misinformed they could make a diagnosis. While at that appt we found out they couldn’t diagnosis AS but they could look at other issues. Our daughter tested well except for the test in the Speech Language Communication Developement Checklist (Prizant 2000). Here they found she had a delay in oral communication abilities. Her skills deteriorate at the conversation and narrative levels. It was suggested she get further evaluation for Aspergers and get speech/language therapy 3x a week. Due to several factors we have not sought therapy….mostly because we are a one car family, but Emily was also undergoing some orthodontist issues and dental surgery so we put it off.

We are scheduled to get her tested this month for Aspergers with a child psychiatrist. To date we have dealt with issues as they arise. We talk about looking at people when she talks and she makes an effort too. We have explained personal space and she practices not standing too close. She is not as physically withdrawn from us as she was when she was a baby. It seems to me that we address everything as it comes up. I am wondering what value a diagnosis would have for us?

Submitted by Anonymous on Wed, 03/03/2004 - 7:14 PM

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The only advantage of a diagnosis is if your child fits it. If he or she does, you have a clearer road map of the sorts of issues that might arise and alternatives of helping.

My son didn’t look at his pediatrician either. We also looked into an Asberger’s diagnosis. It was clear to me in researching the disorder that my son did not fit it. The neurologist we were referred to agreed. I was glad we pursued it because I was able to eliminate it. I think pediatricians are cautious and see themselves as a screen. However, if he had fit it, I think having the diagnosis would have plugged me into a whole community of people who could have supported us and given us appropriate information.

My child doesn’t clearly fit any diagnosis. We have had to deal with things as they come up. For us, it is the only possible model. However, it would be nice if someone else could have written a book on “this type of LD”. It would have saved me a lot of time.

Beth

Submitted by Anonymous on Thu, 03/04/2004 - 12:52 AM

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There are a couple of good reasons to get a diagnosis. Probably the best is for insurance purposes if your child needs any sort of therapy and you are not independently wealthy. And like Beth said, it gives you a road map of what to expect. For some kids a diagnosis is better than the labels that others will give them, e.g. lazy, “weird”, dumb, poorly parented, etc. OTOH, no two kids with the same diagnosis are alike. We don’t take all kids with autism (for example) and dump them in an “autistic” class. We develop an IEP and determine their placement and goals based on their individual needs. It seems that with homeschooling there is even less need for a diagnosis unless you want the public school system to provide services such as speech/language therapy. Be aware too that Aspergers is the “trendy” disorder these days and seems to be diagnosed much more frequently. You see what you look for.

Submitted by Anonymous on Wed, 06/16/2004 - 3:12 AM

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One thing that we did was see a neurologist for an EEG just to rule out absence seizures just to rule that out. Apparently, the being in another world like aspect of autism can also be attributed to absence seizures so our doctor first suggested the EEG to rule seizures out. That sounds like a common sense type of suggestion. My children were ultimately diagnosed as having PDD-NOS, since one had language delays, although I think my daughter who was talking at 6 months is more typically Aspergers. I think there is no point to diagnosis unless you are trying to obtain services of some sort, though. But I guess it never hurts to have a diagnosis and know what you are dealing with….I disagree that autism is just more trendy today; when my husband and his mother who are autistic and dyslexic were in school they were called stupid and lazy (although they worked hard enough to get graduate degrees), autism was just not known about back then.

Karen

Submitted by GailD on Thu, 06/17/2004 - 1:04 PM

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A diagnosis can be just a label or you can use the information to help your child learn better. I had my son in private school and at first I thought he just had a reading comprehension problem. The school resource teacher did some minor testing on him and agreed, but she did want me to have him tested further. She looked into psychologists around the area and helped me find an APPROPRIATE one, whom she felt dealt well with kids and wrote good, easy to read reports. This psychologist turned out to be wonderful (she specializes in kids who are hard to diagnose). She had my son in 4 or 5 times to do different tests based on the results she was getting from the previous days testing. She was compassionate, understanding, and looked at both his weaknesses AND strengths (turns out he is Gifted with LD - who knew??). Her report gave me sooo much information about how my son learned and exactly what those weaknesses and strengths were, that I decided to start homeschooling so I could create a situation that was unique to him. It has been the most wonderful experience all the way around. I found him curricula that he enjoys, I can tweak it as needed and he has blossomed in ways I had not even imagined.

I do not give his report or his label much thought now, nor do I talk much about it, but because of this testing and report, he is a new person.

GailD
www.groups.yahoo.com/group/HomeschoolingExtraordinaryKids

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