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gailcalled's avatar

Know anything about Pervasive Development Disorder-Not Otherwise Specified?

Asked by gailcalled (53594 points ) December 8th, 2007

PDD-NOS is a diagnosis (rather vague, as you can see) at the milder end of Autism, Asperger’s spectrum and is apparently easier to remediate. I have a tiny male friend (almost 2) who is developmentally slow, and am wondering about diet (no gluten, no casein, etc) cranial-sacral work, and other alternative treatments in addition to OT, BT, ST, etc..provided free by NYS.

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4 Answers

sndfreQ's avatar

While I’m not sure about resources in NYS, I know first-hand that there are regional services in California that specialize in providing social services and healthcare assistance for children diagnosed with ASD (Autism Spectrum Disorder). If your ‘little friend’ has not been diagnosed, he most certainly needs to be evaluated by a certified healthcare professional so it can be documented-that is the first step.

From there much research can be done that takes into account all of the services and resources out there-from medical, psychological, biomedical (esp. non-traditional nutritional supplements), and to learn about what is covered and not covered by insurance and by the state.

There are many resources to suggest, but for starters, there is a site that my wife and I used as a starting point that seems to touch on all the areas you described:

Talk About Curing Autism (TACA): http://www.talkaboutcuringautism.org

As for more general information about the spectrum of disorders, you can also research DAN (Defeat Autism Now) campaign at the Autism Research Institute:

http://www.autism.com/

Autism Speaks (partnered with CAN-Cure Autism Now):

http://www.autismspeaks.org/

Also in recent news actress/comedian Jenny McCarthy has published a book for parents that is getting a lot of attention:

http://www.talkaboutcuringautism.org/jenny/

Good luck with helping your friend…there is hope!

p.s. you can also send me a private comment if you need further advice :)

sjg102379's avatar

PDD is indeed very vague; it’s sort of a catch-all diagnosis for people on the autism spectrum (which is getting broader and broader by the day). It’s also being used synonymously with mental retardation in some cases, perhaps because it sounds more PC. There are tons of “alternative” treatments out there, but no real proof outside of anecdotal evidence that they work. If a parent wants to go that direction for their kid, I respect their choice, but if I was in that position, I would go with the more medical model of PT/OT/Language therapy, etc.

sndfreQ's avatar

@sjg: you’re right in the sense that in the case of alternative treatments, the proof is in large part is anecdotal; a big part of that problem is that for many years, pharmaceutical industries and health care hmo’s have lobbied against many of the efforts in the scientific community to find the root causes of ASD; our government does not fund most of the research being done today to determine the causes, and for many of the so-called alternative approaches, moving forward with FDA clinical trials has been fraught with controversy, debate and resistance, as sadly the government yeilds to serving larger corporate interests.

FACT: The CDC reported this year that 1 in 150 children born in the U.S. will be or have been diagnosed with ASD. These are epidemic figures, yet so little is being done at the legislative level to address this serious problem.

Many in the ASD community believe that only relying on pharmaceutical and psychotherapy approaches limits treatment, and only “patches” the symptoms. If it were your kid you would do anything to give him/her the best possible chance of succeeding in attaining a healthy, productive life.

Behavioral, psychotherapy, and social/behavioral adjustment therapies are only parts of the larger “puzzle”; biomedical, chelation, IVIG gene therapy, and others are all avenues that top scientists and researchers worldwide have been looking into, and for many parents out there, the lack of awareness is what prevents them from seeking the answers for themselves.

gailcalled's avatar

Thank you both for the thoughts and the sites. My little guy was evaluated at about 18 months (mandatory now for the under-2 set in NYS) and is getting all the traditional behavioral, speech, occupational therapies in heavy doses at his home. But we are looking for parents who have had personal experiences w. the non-traditional approaches. There are so many different stories and thoughts and reports; it is difficult to sort thru them all.

His parents and the greater family are all aware and searching for anything that is not dangerous.

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