NIDS: cutting-edge or quackery?
I was on a panel at a local autism/aspergers conference this past weekend. I'm glad I went, both to represent parents and people on the spectrum, and to keep an eye on what therapists and parents are being sold as autism treatment.
In the first presentation, a nurse representing the NIDS (Neuro-immune Dysfunction Syndrome) camp, used a great deal of "we think" and "hypothesis" type language, a big improvement from when I met her a few months ago and she was talking about how "we KNOW what causes autism".
But I'm still uncomfortable with a lot of what they say: there's a lot of talk about normalizing the immune system, as though they had already established a causal relationship between immune response and autism (they haven't even attempted any studies AFAIK). To say nothing of any efforts at testing whether or not the NIDS Protocol (dietary mods, antivirals and antifungals and antibiotics) actually does anything useful to help kids with autism (it's always kids, you know). The line is basically get the kids' immune responses "normalized" and then they get therapy.
I guess if the therapy works, it's because of the NIDS protocol. And if it doesn't, it must be the wrong therapy.
I just read this entry on quackery in Prometheus' blog and I think it describes Goldberg's approach very well. His approach takes difficult to diagnose disorders (CFS, Autism) and replaces them with made-up diseases (CFIDS, NIDS), and adds a protocol that requires special expertise to design and administer, tests that take special expertise to interpret, and promises nothing at all.
So I'm going to keep my eye on the NIDS crew. So far they seem to be flying largely under the radar of the mainstream autism establishment.
In the first presentation, a nurse representing the NIDS (Neuro-immune Dysfunction Syndrome) camp, used a great deal of "we think" and "hypothesis" type language, a big improvement from when I met her a few months ago and she was talking about how "we KNOW what causes autism".
But I'm still uncomfortable with a lot of what they say: there's a lot of talk about normalizing the immune system, as though they had already established a causal relationship between immune response and autism (they haven't even attempted any studies AFAIK). To say nothing of any efforts at testing whether or not the NIDS Protocol (dietary mods, antivirals and antifungals and antibiotics) actually does anything useful to help kids with autism (it's always kids, you know). The line is basically get the kids' immune responses "normalized" and then they get therapy.
I guess if the therapy works, it's because of the NIDS protocol. And if it doesn't, it must be the wrong therapy.
I just read this entry on quackery in Prometheus' blog and I think it describes Goldberg's approach very well. His approach takes difficult to diagnose disorders (CFS, Autism) and replaces them with made-up diseases (CFIDS, NIDS), and adds a protocol that requires special expertise to design and administer, tests that take special expertise to interpret, and promises nothing at all.
So I'm going to keep my eye on the NIDS crew. So far they seem to be flying largely under the radar of the mainstream autism establishment.
posted by redlami at 10:15 AM
1 Comments:
Unfortunately, there is not enough info about this out there...but its not anymore unproven than DAN Protocols with children.
By the way. My daughter with autism is recovering thanks to this protocol. I have been blogging her progress for 3 months now. It works, but it may not work for everybody.
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