Perspective and Bias in Autism Treatment

July 19 2016

Juicy-FruitLet’s start this off by remembering the only hard and fast rules about treating a child with autism:

1. Nothing works for every child.

2. No one is more in tune with a child than a child’s mother — or in some cases father — and “mommy gut” overrides anything any practitioner may suggest.

I’ve been watching a very interesting phenomenon happen the last several months in autism-mom Facebook groups. Someone will get enamored with a particular practitioner’s protocol and have great results. They will then share those results. People will flock to that particular practitioner. Then they will get confused because the guidelines for that protocol may contradict things that they are currently doing which are working well. So they stop what they’re doing (sometimes abruptly), switch to said new protocol and get surprised when either their child crashes from the abrupt change or doesn’t flourish on the new protocol. Now they don’t know if the crash is because of the new protocol itself or because the earlier things that were working were removed.

I am not going to give examples because every time I do, I manage to alienate someone. I’m going to speak in generalities.

For protocol Z, endorsed by practitioner A, you cannot use antioxidants.

For protocol Y, endorsed by practitioner B, you cannot use chelators.

For protocol X, endorsed by practitioner C, you cannot use MB12.

For protocol W, endorsed by practitioner D, you cannot use anything electrical (think e-Earth Energy, light therapy, IonCleanse therapy, etc.).

"If all you have is a hammer . . .

“If all you have is a hammer . . . it goes on. In a world of “I’ll have what she’s having” — where we see moms who’ve recovered their children with protocols X, W, Y, or Z — it’s dizzying and confusing to be told that something we’re using that has been tremendously helpful is, per the new practitioner, harmful.

I want to make sure that we are all remembering one very important point: Practitioners who have developed a signature protocol tend to be biased toward their own protocol and against other protocols. The reasons for that bias are varied, but in many cases comes down to a combination of education (they may not know the specifics of how things outside their protocol work); ego (they may be unwilling to accept that their protocol doesn’t work for every child or convinced any deviation will make it not work); and income. It’s critical we keep in mind that practitioners make their living treating patients, and endorsing other protocols could lose them patients. (Please note, I am not advocating that practitioners not charge for their time. Everyone should be compensated for their time and effort.)


. . . everything looks like a nail.”

As Thinking Parents, it is vital we remember that we are the ones in charge of our children’s healing — in partnership with medical providers (or teams of medical providers). We are the ones who do the research, look at all the protocols, figure out which ones should work best for our children, and try them. We are also the ones who have to live with the results. We get to choose what we do. We have moved past that stage of thinking doctors are infallible; we know otherwise. I am not telling you to throw out the baby with the bathwater, just to remember that bias exists among practitioners. If their protocol doesn’t work for us and they are unwilling to accept rules 1 and 2, we have the choice to either do their protocol differently or see another practitioner.

~ JuicyFruit

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