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One of the loveliest features of this group is the opportunity for parents who are new to the world of disability and autism is to hear from parents with many years of experience -- so those new parents can avoid some of the mistakes we veterans unwittingly made.
DAN! (or MAPS, or "biomedical" approaches to autism, doesn't really matter) is pseudoscience. That means it is poppycock but sounds "sciencey," so that parents who are given few answers for how to help their autistic child by the mainstream medical establishment, and who are often desperate to "fix" their autistic child because of negative media messages about autism, will grasp at such seemingly authoritative straws. Hence the need for such practitioners to mention Ivy League credentials, etc., repeatedly.
Note that DAN! doctors don't usually take insurance. So, erm, what are the families who can't afford such treatment supposed to do? Don't you think that if DAN! ideas were truly effective they would be embraced by the mainstream medical establishment and the government so that children of all income backgrounds could benefit, not just those whose families have sufficient income (or houses to mortgage)?
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| Love my dude. [Image: Woman with medium-length red hair and sunglasses sharing an embrace with a boy with short brown hair Both with beige skin.] |
Here are some guidelines for identifying DAN!/MAPS and other autism pseudoscience:
...all autism approaches should mirror the physicians’
credo “First, do no harm.” But how do you determine when benefits
outweigh potential damage? The pseudoscience so often promoted as
“autism treatments” has a handful of consistent identifying
characteristics. Ask yourself:
- Does this practitioner or vendor promise miracles that no one else seems to achieve?
- Is the person promising the outcome also asking me for money?
- Do I find any scientific research supporting their claims, or are there only individual (often emotional) testimonials of effects?
- Does the practitioner or vendor promise a blanket “cure” for unrelated disorders, such as grouping together allergies and autism; or autism and ADHD; or autism, diabetes, cancer, and allergies?
- Does the practitioner or vendor have strong credentials as an expert in the therapies they’re promising, or in the field of autism?
Thinking critically is one of the most important actions we can take for those we love, and for ourselves.
From: http://www.thinkingautismguide.com/p/mission-statement.html
- What Now? Ten Tips for Families with a New Autism Diagnosis:
http://www.thinkingautismguide.com/2010/06/what-now-ten-tips-for-families-with-new.html - And something I wrote in HuffPo about accepting and understanding autistic kids:
http://www.huffingtonpost.com/knowmore-tv/what-i-wish-your-child-knew-about-autism_b_5167390.html
-Shannon
I encountered your blog near it's beginning, and it truly amazes me how much your views have evolved. I started reading your blog because I was talking to people about the autism/vaccine link (which was already pseudoscience then) and in my mind, you were the example of the rational person who needed to be convinced of the science.
ReplyDeleteI do feel that the story of your evolution might be more important into convincing new folks than a recitation of what you believe now.
BTW, just glanced in on your first few blog posts, and, another wonderful change is the evolution on marriage equality -- in one of your first posts, you point out that there is a greater burden in marrying a woman, because, your marriage won't be recognized in the US. Yay for both of our states now. The world (and people) really can change and evolve.
Thank you for this perspective (and your incalculable patience). And I'm with you on the Yay.
DeleteRe: the best version of this story, the very kind and talented Steve Silbmerman has included it in his forthcoming book NeuroTribes. It's a small but hopefully galvanizing part of a very big and hopefully influential book.
BTW -- the country's evolution on marriage equality, not yours.
ReplyDeleteUnderstood, both times. :)
DeleteFollow up comment on the board, anonymized again:
ReplyDeleteThe most useful tool in this situation is probably the checklist I originally posted, about how to determine whether or not an autism approach is questionable. Parents new to autism get firehosed with approaches and stories, and sifting through them is long, hard, emotionally taxing work, as [redacted] noted. Checklists and guidelines from veterans can help. So can listening to autistic people themselves about how they felt about such approaches, and what they think is actually helpful (an example is the We Are Like Your Child blog's post on how to know why an autistic kid is being aggressive, and what to do about it: http://wearelikeyourchild.blogspot.com/2014/05/a-checklist-for-identifying-sources-of.html).
With regards to the work it takes to determine whether or not someone is legitimate: Martha Herbert, who is genuinely a pseudoscience advocate, is a good example. Her Harvard credentials have gotten her a lot of traction. Yet you don't see her work in legitimate journals or her at legitimate research conferences, which is why she has to write books instead (or co-write them, with science writer Karen Weintraub).
Local UCSF integrative pediatrician Sandy Newmark is another example. I've met him (and even been on KQED Forum with him). He's a kind, thoughtful man. But I don't consider him a reliable expert -- even as a lay person, I knew more about the state of autism causation science than he did at the time (he was citing long-debunked environmental causation theories). If I was going to take my child in to a doctor for treatment, I would not want them in the care of a science denialist.
Also, what [redacted] said about mainstream doctors not always listening, and alternative practitioners being more sympathetic -- that is too often true, and it needs to change. The AASPIRE Autism and Health project was created to address some of these concerns and make it easier for autistic people to get the medical care they need, and for doctors to understand the needs of autistic patients better. It was developed for adults but many of the tools (such as customized health care profiles) can be modified for kids: http://autismandhealth.org/
Best wishes,
Shannon
Also: This post is about health care, medical care, and diagnoses only.
ReplyDeleteI think the most important item on your checklist is the one regarding scientific research. Unfortunately, many people don't know how to determine whether a research study is valid and well designed. Anecdotes, which rely on narrative, are so much easier to understand and therefore can be very powerful and persuasive. I wish that understanding what is valid scientific research were a more prominent part of science curricula at high schools and for non-science majors at college, and more specifically, that this training were offered to parents of newly diagnosed children. The developmental pediatrician who diagnosed my child many years ago sent us to ASATonline.org, which was very helpful to me because it cut to the chase regarding autism and treatments.
ReplyDeleteThat said, there are pseudoscientific therapies that don't do harm and can offer (non-miraculous) benefits to some children on the spectrum. In the case of my child, hippotherapy has helped her develop her strength and coordination, has increased her focus, and has motivated her to follow instruction, not to mention given her much pleasure. Nothing earth shattering, but worthwhile. Likewise, I believe that nutritional supplements (while not in any way "curing" her autism) have helped to keep my child physically healthy and therefore more available to learn, especially since she is a terribly picky eater. Just a couple of examples of non-proven approaches that are supports rather than treatments for autism that perhaps don't need to be dismissed entirely.