Treating the whole person – autism, science and skepticism

Yesterday, I stumbled across this wonderful article in WBUR’s Common Health blog, with a book excerpt by Dr. Martha Herbert, who has been studying autism for 15 years or so. In it, she describes how some kids with autism have managed to be essentially cured of it, and how others have been helped to a manageable state using a variety of tools. This is a radical departure from what was previously thought about the disorder:

For decades, doctors have told parents that autism was a genetic problem in their child’s brain, and that it wasn’t going anywhere – that they should expect their toddler’s troubles would be with him/her forever. Autism has long been defined by its deficits, by what the child is believed unable to do: communicate, control himself, function like everyone else. Parents might make improvements around the edges – reduce the tantrums, limit the crazy behaviors, get the child to follow directions – but the essential deficits would remain.

But Herbert refused to believe this, given what she had seen: kids who previously couldn’t even speak growing up to be A students with many friends, or productive adults who just have “a few quirks,” or even remaining non-verbal but communicating beautifully through painting, music, or a computer keyboard. “The more I worked with my patients,” says Herbert, “the more I realized I had a choice: to ‘see what I believed,’ or to ‘believe what I see.'” What she saw frequently was astonishing improvement in certain cases, in particular when the patient was treated as a whole person, rather than just a defective brain. Herbert’s conclusion is that autism is “a problem of the whole body, including the brain, from molecules to cells, from organs to metabolism, from immune to digestive systems,” and that persistence in the belief that someone with autism can be brought to his or her full potential can effect dramatic improvements.

The strange part of reading this for me was receiving, the same day, an article from a friend detailing the finding of genetic deficits in young people with autism, and a greater understanding of the abnormal brain development that tends to lead to the disorder. The articles were literally published on the same day, and they made me think about the way medicine tends to approach these profound and poorly-understood problems.

My main worry, having seen the two articles, was as follows: on the one hand, here’s a Harvard neurologist who has treated children with autism for years, saying things like, “In all my research and reading, I have never found proof of the genes-hopelessly-mess-up-the-brain-for-life model of autism….I believe that autism is not a genetic tragedy, but an unfolding and unprecedented catastrophe, related to many other health and environmental crises. Our world is making us sick. We need to build a world that makes us healthy.” What a beautiful thought from the evidence-based scientific community; what a message of hope for parents, kids, and even doctors who are dealing with the rising incidence and seeming hopelessness of this disease! Yet on the very same day, an article on new findings in genetics research. “Until now,” the article at ICare4Autism.org states, “few studies have been able to investigate whole-genome gene expression and genotype variation in the brains of young patients with autism, especially in regions such as the prefrontal cortex that display the greatest growth abnormality.” While one finding doesn’t necessarily undermine the other, in a debate that has always been heated and rife with inaccuracies and hysteria, it would be easy to shoot down someone like Dr. Herbert – look, we’ve found the genetic cause and the brain abnormalities! You can stop all your crazy holistic nonsense now!

And yet it’s a holistic combination of factors that has been consistently shown to help kids with autism: dietary changes, environmental changes, and as Dr. Herbert says, a somewhat intangible thing called belief: the incredible patience and love of parents who can see the full potential of their children and are willing to do everything imaginable to try and fulfill it.

Both of these articles are excellent good news for people with autism and the people who love them: a pinning down of the underlying genetics on one hand, and a whole-body approach to management on the other. I just hope that as the hard science data slowly mounts, the efficacy of treating the whole person isn’t discounted.

Published by Kamela Dolinova

Expressive arts adventuress: writing, performing, healing, loving.

4 thoughts on “Treating the whole person – autism, science and skepticism

  1. We (ICare4Autism) actually covered Dr. Herbert’s findings on our sister blog hear-our-voices.org on the very same day. I hadn’t considered that the two views could be seen as being at odds. I don’t think any researchers are even close to having the full picture in regards to what causes autism, but what we are hearing over and over is that the causes seem to be a combination of genetic and environmental factors. As Karen Weintraub states “just as autism is not simply a genetics problem, it is not simply a brain problem, either.”

    As you say, anything that is going to lead to better treatment options is a good thing. Here at ICare4Autism we definitely have open ears to any theories that may improve the lives of those affected by autism.

    1. Thank you so much for reading and commenting! I’ll be sure to check out both blogs more thoroughly, and I’m glad to hear that at least from your perspective, my fears are ill-founded.

  2. This is fascinating, important stuff. I’m glad you’re taking it on, you with your powerful mind and powerful heart and way with words.

    “…the incredible patience and love of parents who can see the full potential of their children and are willing to do everything imaginable to try and fulfill it.”

    I wish that this did not so often cross the line into “I will not rest until my child has turned into the person I imagine that they could be” and that “everything imaginable” did not so often involve therapies that are potentially damaging to children’s health. How to balance the power of hope with the power of acceptance is such a fraught question in these communities. In a culture characterized by the pervasive, toxic belief that every child can and should become an A student, how do we hold on to the part of ourselves that welcomes self-expression through unusual channels like painting or music – that doesn’t judge adults by how “productive” they are – and that strives to help people become what is best for them to be, not what we dream they could be or society says they have to be in order to be worth anything?

    I would love to hear more about your thoughts on this. As you know, I wrestle with this stuff constantly.

    1. Thanks, you; I always love hearing your perspective.

      Yes, it is hard; heck, I’m fairly neurotypical and I’ve struggled with these questions myself for years – finding my value in what I am good at and what I do offer, regardless of its remunerative value or how the larger society views its “productivity.” I like the scare quotes around “productive,” by the way; it’s true, what do we mean by that? It’s a tough balance.

      I don’t know what to do about balancing hope and acceptance in these communities; I’m not nearly as familiar with them, first of all, as I’m sure you are. It reminds me a bit of the right to die issue: in the absence of a DNR order, how can relatives decide when it’s time to let someone on life support go? Some people will let someone hang on for years in the hope that they will one day awaken. Others pull the plug.

      That’s a drastic example, but a similar issue in some ways: to what extent does an excess of false hope potentially make the quality of life for both the autistic person and their caretaker much worse, by pushing the patient past his or her limits, and keeping the caretaker in a constant state of disappointment?

      On the other hand, I know personally of some kids who were put in long-term hospitalization and are almost entirely non-responsive, and I wonder if everything possible was done for them before they were, in some sense, given up on. Granted, I also don’t know what kinds of facilities the particular institution has in place, but I’m having trouble imagining it being awesome.

      What have your experiences been with this?

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