Me and Leo and The Doctors

(I am talking about autism pseudoscience, not saying, "Yes, they're real.")
[image: Screenshot from the TV Show The Doctors, with me gesticulating
next to B.J. Freeman, a white woman with silvery shoulder-length ombre hair.]

I was on TV show The Doctors earlier this week, and was so glad to have the opportunity to speak out against bogus, dangerous autism treatments. I was glad even thought it meant talking about all the crap we put Leo through when we didn't know any better—which is why I co-founded Thinking Person's Guide to Autism: so people can learn from me, and not make the same mistakes for lack of guidance. (What you cannot see in the video below, alas, is that I was wearing Star Trek socks in honor of being on the Paramount Studios lot.)

[video description: A segment from the TV show The Doctors, with me talking about autism
pseudoscience, and then Dr. B.J. Freeman talking about ABA therapy while I grimace.]

The show started out by exposing MMS/bleach enemas as an autism "treatment" for the abusive scam that it is, and I'm glad the hosts pointed out that if you're afraid to talk to your doctor about something you're considering doing to your kid, that should be a red flag. Then I spoke about how I fell for autism pseudoscience (sigh), and how misguided such approaches are. Here's my quote that they used:

"Every step of it perpetuating the fear and the stigma and the misunderstanding that autism is treatable and curable when autism is how your brain works." 

[image: Spreadsheet of the bogus autism supplements Leo was on in 2003,
projected on a screen behind the four hosts of The Doctors TV show.
A superimposed title reads "Dangerous Autism Treatments Exposed?"]

The show even displayed the spreadsheet of supplements and other crap that I let that carpetbagger DAN! doctor talk me into using on Leo. And about which I was pissed off, even at my most circa-2003 hopped up and credulous. Here's the actual document, if you want to scrutinize and roll your eyes more extensively:

All the supplements Leo's DAN! doctor had him on. Sigh.
[image: Spreadsheet of non-evidence-based supplements for
"autism" treatment, categorized by type versus dosage and
other factors such as "tastes like shit," above a corresponding
photograph of the bottles of supplements themselves.]

And then I got to talk about how awesome Leo is, which is always great. And even better, the show's doctors and experts mostly focused on how autism is neurology so "cures" are misguided and not helpful, that we need to focus instead on helping autistic kids be their best selves.

And then the segment turned into a group paean to ABA therapy, which made me visibly roll my eyes (they caught THAT on tape) and slow clap, because pretending like ABA is the best and only medically-approved way to help autistic children is not only not true, but is disingenuous given how much ABA gets called out by autistic people and allies as a ... dangerous autism treatment.

Dr. B.J. Freeman of UCLA, the woman next to me in the screenshot and video above, was their ABA expert, and even though she's fought against autism pseudoscience and is largely responsible for clinical recognition that sensory issues are central to being autistic, she did not address critiques of ABA in any way. (And yes, anyone who's been following along knows that Leo is in what is formally called an ABA program, so I'm working on a post—because while there are so many good critiques available, I've yet to see an analysis that tackles ABA's fundamental dangers to autistic kids, addresses why it is near-universally endorsed, and helps parents navigate those problems while doing right by their autistic kids.)

The experience of listening to doctors who seemed to care about autistic kids' welfare got me thinking about Leo's own doctors, and how great they are, and how much he has grown with them. The photo below was taken earlier this week, of Leo and his ophthalmologist Dr. Kim Cooper, who is the greatest. She has been working with Leo since he was three, and he has gotten to know her, and her office routine, and the procedures he will go through. Dr. Cooper is careful to avoid any unnecessary procedures, and often takes extra steps to accommodate Leo, such as examining his eyes with hand lenses rather than via machine, if that's what works best for him.

Leo and Dr. Cooper are friends
[image: Leo and Dr. Cooper, a white woman with glasses and short brown hair, 
in an ophthalmology exam room, smiling at each other.]

Obviously Leo has matured as well, but the fact he and Dr. Cooper have grown and learned together has made a huge difference in my son's ability to get good medical care.

I'm glad mainstream TV doctors are doing better by autistic people like Leo, even though they still have a lot to learn. And I'm glad Leo has so many good doctors in his own life.

What Would You Say to This Misguided Autism Parent?

Just came across this. Sigh. She seems like a reasonable, passionate sort -- but is totally invested in biomedical/DAN! autism chicanery. What advice would you have? How would you approach her?

My son has been back on gluten (wheat and related grains) for five days now. His behavior hasn't taken any noticeable nose dives, no sir. Quite the opposite. On Friday he went up to our friend Mary, and announced "Dat's Mary!" Everyone in the room was shocked and pleased. That same day his speech therapist told me he'd had his best session in weeks.

And (apologies, gentle readers) his bowel movements haven't been liquified, either. Those little logs are still rolling along. I am hopeful, oh so hopeful, that we can eventually phase in dairy, chocolate, citrus, peanuts, and sugar.

Now, does all this mean that the past nine months of special diets and vitamin supplements and dietary enzymes have been for naught? Hell no.

I firmly believe that autism arises from multiple causes: hard-wired genes, the environment (including lead poisoning), vaccines, and/or diet. But, as of today, there is no way to quickly pinpoint how a child became autistic. One of the only things a parent can do, can control, is dietary trial and error.

Hence the elimination diet. It was and remains complicated, but it is in no way harmful to him. Not a bit. As in, there was no harm in trying it, and now we may get to be fairly certain that diet is not a factor in his case.

In addition, his GI tract had been seriously messed up by round after round after round after round of antibiotics--the poor boy had non-stop squirts. Putting him on a bland diet has given his little innards the resting period they needed to rebuild themselves. They seem to be able to do their job just fine these days, although they are still getting a little assistance from probiotics (heartily endorsed by his mainstream pediatrician, BTW).

Many autism professionals, particularly those in the ABA field, are skeptical when it comes to elimination diets. Some are outright hostile, and will make concerted efforts to dissuade parents from trying dietary approaches. Fuck them. They're not the parents. They don't have to live with the child; they won't be there in ten years.

Again, there is no harm in trying an elimination diet, other than inconvenience on the parents' part (note that inconvenience does not equal impossibility). For some children, this diet makes an incredible difference. For others, not a whit. But wouldn't you rather know?

Ways to get started:

• Read Karyn Seroussi's Unraveling the Mystery of Autism...
  Novelized account of her son's recovery due to a special diet; a bit shrill, but compelling nonetheless.
  
  
• Read Lisa Lewis's Special Diets for Special Kids
  Causation, theories, recipes.
  
  
• Find Yourself a Good DAN Doctor
  Ask for recommendations from current and former patients. Some of these practitioners should be canonized, but I have heard of others who are costly bumblers.

...

...

...

Well?

Now here's the thing. I wrote this post. Seven and a half years ago. One year after Leo's diagnosis. Because I was misguided. Because I listened to the wrong people (e.g., see list above). Because those people were the loudest voices in the autism parent community. Because good information wasn't available. Because a book like our new Thinking Person's Guide to Autism wasn't available.

But ... our book will be available, in just a few days. We hope it will make a difference to anyone new autism. We appreciate your patience, and hope you will help spread the word about our book, and why it's so important. Thank you.

Not a Huge Fan: Autism and Biomedical Interventions

A mom from a local, general parenting egroup sent out an email about her new naturopath, and mentioned that "he treats autistic children, too." This doctor just happens to be Leo's former DAN! doctor, Dr. Prattle. Here was my response:

Dr. Prattle is an advocate of the scientifically unsubstantiated "biomedical" approach to treating autism, which involves dietary modification as well as enormous quantities of supplements, creams, injections, and sometimes chelation to remove heavy metals. It is an incredibly intensive and expensive endeavor.

He also makes recommendations for his autistic patients' sensitivities to be treated through a technique called Bioset, of which his wife is a practitioner, and to whom he refers patients -- a ethically questionable practice, but not one that families in shock from an autism diagnosis are likely to question.

The only proven methods for helping kids with autism gain skills are individualized 1:1 therapies, like Applied Behavioral Analysis, Floortime, or RDI. These are also intensive and expensive. Families with newly diagnosed autistic children might want to reserve their energies for methods proven to help their children, and explore biomedical interventions only if they have the extra resources.

Now, I personally know at least two families who swear that Dr. Prattle has made a difference for their children. I know many others who swear by the dietary modifications, such as the GFCF (wheat-free, dairy-free) diet. [Note: Dr. Prattle's testing revealed one of these children to be truly sensitive to wheat and dairy. The same testing showed no such sensitivities for Leo, but Dr. Prattle recommended that we pursue full-fledged biomed/dietary approaches anyhow "because some sensitivities just don't show up on tests."]

I also know that my son's ABA team, who have been working with severely autistic children for ten and even 20+ years, swear that they have never seen any any benefits from Biomedical interventions. [Note: This opinion was given to us six years ago, when we were starting Leo's home ABA program. His team knew that Biomed is mostly time-consuming rather than harmful, and trusted that we'd find our own way eventually.]

If you or anyone you know is reeling from a child's autism diagnosis, the best thing to do is start making connections in your new (and totally ass-kicking) special needs parenting community. Join local special needs parenting boards (e.g., http://groups.yahoo.com/group/peninsulaparentssnk/), join local parenting support groups (like our own SEPTAR, www.septar.org), and read the blogs of people in the autism community, especially those of parents who've been there before you and have made peace with -- and love -- the child they have, rather than the child they thought they would have.

• http://autism.change.org
• http://joyofautism.blogspot.com/
• My open letter to families who think their child might have autism:
• http://www.squidalicious.com/2008/08/to-any-parent-who-thinks-their-child.html

Most importantly: do not let fear override your gut when it comes to making the best decisions for your child.

Please feel free to contact me, or have your friends contact me, if you have any other questions. I mean that sincerely.