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Author Topic: Autism with Down Syndrome
ketchupqueen
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I was just chatting with a lady in my ward after Stake Women's Choir practice. She has a daughter who has Down Syndrome (Trisomy 21). She's noticed for a long time that Hannah is not developing like the other kids with Down Syndrome she sees, even those with the same severity of retardation (Hannah has been evaluated at about an 18-month-old level mentally and 1 or 2 years physically; she's 7 1/2). She went online yesterday and realized that Hannah fits the profile exactly for autism. Hannah has been evaluated countless times, and her mother keeps pushing them to check for other things, but any anomalies in her behavior are just explained as frustration or developmental delays due to the Down Syndrome.

Does anyone have any resources I can refer her to, or advice on how to get help and an accurate diagnosis if Hannah does indeed have autism?

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Synesthesia
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Mostly I know of some advocasy sites
http://www.udel.edu/bkirby/asperger/

Here's one of a person who has autism with links about diagnosis.

http://www.aspergerinformation.net/

Mostly these are adult austics talking about various issues, but there's a lot of useful links.

http://www.autistics.org/library/

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rivka
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This looked like it might be helpful. And also this.
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Dagonee
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Some info. I can't vouch for any of it.

quote:
As many as ten percent of persons with Down syndrome may also suffer from autism. Exact data is difficult to obtain. Many cases go undiagnosed, or are diagnosed at a later age. Many diagnosticians are unawares that the two conditions may exist or are reluctant to apply the second diagnosis. Autism diagnosis is much more complicated than Down syndrome; there is no blood test, genetic marker, facial features, or other characteristics that apply to all autistic persons. The diagnosis is subjective, depending on meeting observations of certain behaviors. Diagnosis and treatment of autism is much more critical than for Down syndrome. Without early detection and intervention the life of a person with autism may be much more limited than that of a person with Down syndrome and often results in autistic children living in a residential school rather than at home because of inability of the parents and the school system to cope with the child's behaviors.
There's a checklist and more on this page.

Dagonee
Edit: Foiled by my obsessive quoting!

[ February 13, 2005, 09:38 PM: Message edited by: Dagonee ]

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ketchupqueen
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Thanks a lot, guys. I'll e-mail her the links; I'm sure she'll find them helpful. Does anyone know what rights she has as the parent of an autistic child, to get a diagnosis and intervention through the school district, etc.?
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dread pirate romany
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My understanding is she is entitled to evals and treatment from whatever district she is in. Even pre-scool age children and homeschooled children have the legal right to it.
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