How Do We Guard Our Children From Harm By Fraudsters Seeking Profit For Profits' Sake, Off The Current Rise In Autism Numbers? | MyAutismTeam

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How Do We Guard Our Children From Harm By Fraudsters Seeking Profit For Profits' Sake, Off The Current Rise In Autism Numbers?
A MyAutismTeam Member asked a question 💭

No matter our point of view, please, folks, keep an eye out for snake-oil sales! Always fact-check the claims of people claiming to have symptom relief answers for anything (not just autism).

Here's information on someone who spends her time promoting odd "cures" for autism claiming her son was cured... whose son IS NOT AUTISTIC... he was diagnosed in error (it happens when doctors see toddlers with some traits... right now it is evidently a 20% error rate), and they've known it was a false… read more

posted July 21, 2013
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A MyAutismTeam Member

I agree there needs to more research on the subsets and also I also feel that even if a doctor gives an immediate diagnosis of autism so services/therapy can start they should then follow-up with every appropriate medical test to confirm or refute the spectrum and also to provide the most information possible for then to look at possible treatments. MRI's, EEGs, allergry testing, hearing/vision testing, dental visits, gastro evaluation is needed, CAT scan if symptomatic, genetic testing...
There are many misdiagnosis ASD everything from epilepsy to ID to genetic disorders to separate apraxia and yes environmental/SES/family issues (sorry but I have seen it)Currently the present standard of care for diagnosis of a 20 minute look at a child (I know many get more, but most of the families I know this is the "evaluation" they got) and some parent response checklists is not a good way to diagnosis ANY condition.

posted July 21, 2013
A MyAutismTeam Member

I agree that parents need to do their homework before deciding to add a particular biomedical treatment, because there is a lot of snake oil being peddled. *HOWEVER*, dismissing all biomedical treatments would be throwing the baby out with the bathwater. There really *IS* a lot of legitimate research starting to come out to support the effectiveness of certain biomedical treatments for relieving ASD symptoms, at least in a subset of children. Double-blind, controlled studies done by reputable scientists at major research universities or hospitals, and published in peer-reviewed journals. Treatments that provide a very real improvement in quality of life for autistic kids, even if they don't fully "cure" them.

posted July 21, 2013
A MyAutismTeam Member

I believe above is a misguided and incorrect view of autism(s).   Autism is just a group of symptoms with likely different causes/etiology.  Research by dr fein has already shown that up to 20% may have an optimal outcome (ie recover).  These are not "errors" in diagnosis.  It maybe one or more etiology of autism that kids may recover from regardless of treatment.  What is needed is research on why this subgroup recovers while others do not, not a denial of facts or saying they didn't have autism to begin with.  Did the oxidative stress go away, autoimmunity go away, immune activation/inflammation go, or gut dysbiosis change, etc,  Instead of denying it, study it and not just demographically like fein did but also with biomarkers. 

posted July 21, 2013
A MyAutismTeam Member

and as a side note studies on discrete trial (the most commonly meant definition of ABA in regards to recommended treatment./therapy) is 40% effective in studies. So don't just ONE thing/treatment doesn't give your child the best chance.

posted July 22, 2013
A MyAutismTeam Member

The whole DSM criteria is subjective and not based on any medical testing. It is insufficient but regardless of specific DSM diagnosis, I think what is clear is a child is on the "spectrum". No competent doctor is getting that wrong. Where in the spectrum is best educated guess which may not be accurate. Whether a child recovers from ADHD, PDD-NOS or ASD, it is still indicative of an optimal outcome for the child. Until the etiology is known or sub-groups can be separated based on medical testing, unfortunately we have to rely on the subjective DSM definitions.

One should obviously research every drug or treatment given to a child EVEN if the treatment has double blind studies on it. Making a claim is easy and there is plenty of those, but backing a claim with scientific studies is different. Nevertheless, whether someone "claims" or proves in double blind studies about any specific treatment, it still doesn't mean it will help your child or your child will respond to a certain treatment, so most importantly always need to consider the downside/side effects, not just the efficacy. Efficacy is not guaranteed with stimulants, SSRIs, anti psychotic drugs, ABA or simple supplement such as magnesium or with diet. It is a trial and error for most - biomarker based treatment would obviously be better.

For example, the latest proven biomed treatment with double blind studies - BH4. That is one that I would seriously consider down the road and ask my doctor about based on research. It would be silly for me to spend tens of thousands $ on ABA, and not look at medical and biomed aspect that can potentially help my child.

posted July 22, 2013

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