tag:blogger.com,1999:blog-5563550.post4464682383487459601..comments2024-02-02T03:32:36.204-07:00Comments on SQUIDALICIOUS: Parents New to Autism: Don't Fall for Pseudoscience like DAN! or MAPS.Unknownnoreply@blogger.comBlogger7125tag:blogger.com,1999:blog-5563550.post-34764265075114030042015-06-05T08:32:40.364-07:002015-06-05T08:32:40.364-07:00I think the most important item on your checklist ...I 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. <br /><br />That 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. <br /><br />Suehttps://www.blogger.com/profile/04462865960278605079noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-29100726802745060892015-05-31T12:22:50.082-07:002015-05-31T12:22:50.082-07:00Also: This post is about health care, medical care...Also: This post is about health care, medical care, and diagnoses only.Shannon Des Roches Rosahttps://www.blogger.com/profile/18057806553670980068noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-77945060021250836762015-05-31T12:21:00.877-07:002015-05-31T12:21:00.877-07:00Follow up comment on the board, anonymized again:
...Follow up comment on the board, anonymized again:<br /><br />The 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).<br /><br />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).<br /><br />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.<br /><br />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/<br /><br />Best wishes,<br /><br />ShannonShannon Des Roches Rosahttps://www.blogger.com/profile/18057806553670980068noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-18904591487482927362015-05-31T12:19:22.415-07:002015-05-31T12:19:22.415-07:00Thank you for this perspective (and your incalcula...Thank you for this perspective (and your incalculable patience). And I'm with you on the Yay.<br /><br />Re: 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. Shannon Des Roches Rosahttps://www.blogger.com/profile/18057806553670980068noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-29463874663307886152015-05-31T12:15:59.038-07:002015-05-31T12:15:59.038-07:00Understood, both times. :)Understood, both times. :)Shannon Des Roches Rosahttps://www.blogger.com/profile/18057806553670980068noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-15930522622406105902015-05-31T09:41:56.691-07:002015-05-31T09:41:56.691-07:00BTW -- the country's evolution on marriage equ...BTW -- the country's evolution on marriage equality, not yours. zbhttps://www.blogger.com/profile/13205346985598789513noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-69015551124734537072015-05-30T10:05:50.749-07:002015-05-30T10:05:50.749-07:00I encountered your blog near it's beginning, a...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. <br /><br />I do feel that the story of your evolution might be more important into convincing new folks than a recitation of what you believe now. <br /><br />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. zbhttps://www.blogger.com/profile/13205346985598789513noreply@blogger.com