Parents of children on the autism spectrum are wading through a considerable amount of information on the Internet purporting effective treatment and “cures” for autism. A majority of the treatments have been discredited:
“Almost by accident, Laidler says he and Ann, discovered the diet they’d put their son on didn’t work. ‘He was gluten-free and we thought it was a miraculous cure for our son because he’d made pretty dramatic strides from the age of 3 to 4. We were starting to see real progress. But on a trip to Disneyland, he grabbed a waffle off the table and ate it before we could stop him. Doctors had told us that one drop [of gluten] would cause a dramatic relapse—we’d been told anecdotal stories that a speck of wheat bread would cause an autistic child to have weeks of bad behavior. And nothing happened.’
“The Laidlers had also tried chelating their son, and as physicians they had helped other families who wanted to try it. ‘Nobody ever told me it did any good. So to regain my sense of mental balance I started asking a lot of pointed questions: Have you tried chelation? What was the result? Ninety percent of people I asked said they saw no improvement.'”
From the beginning, their physical relationship was governed by the peculiar ways their respective brains processed sensory messages. Like many people with autism, each had uncomfortable sensitivities to types of touch or texture, and they came in different combinations.
Jack recoiled when Kirsten tried to give him a back massage, pushing deeply with her palms.
“Pet me,” he said, showing her, his fingers grazing her skin. But Kirsten, who had always hated the feeling of light touch, shrank from his caress.
“Only deep pressure,” she showed him, hugging herself.
He tried to kiss her, but it was hard for her to enjoy it, so obvious was his aversion. To him, kissing felt like what it was, he told her: mashing your face against someone else’s. Neither did he like the sweaty feeling of hand-holding, a sensation that seemed to dominate all others whenever they tried it.
Children with autism will become adults with autism, some 500,000 of them in this decade alone. What then? Meet Donald Gray Triplett, 77, of Forest, Mississippi. He was the first person ever diagnosed with autism.
His arms are covered with the sticky gunk left after bandages come off. There is a blue bruise on the inside of his right forearm. A long plastic tube enters a hole near his belly button. When it’s not in use, James “Bo” Calvert tucks the tube that he uses for dialysis into a spandex “bra” that circles his chest.
Calvert has stage 4 kidney disease, which means his kidney function is only 15 to 30 percent. There are six stages of chronic kidney disease — stage 4 is the last stage before end-stage renal disease (ESRD), when the kidneys cannot filter waste and excess fluid from the blood. At this point, you need a transplant or dialysis to stay alive.
An interior view of a goop pop-up shop in Newport Beach, CA, 2017.
(Photo: Alex J. Berliner/ABImages via AP Images)
“Why do we all not feel well? And what can we do about it?” asks GOOP, Gwyneth Paltrow’s much-mocked wellness empire. The answer might be “Visualize your aura and shove a rock into your vadge for good measure,” but it might also be “Get the medical community to realize how badly it’s failing women.” At The Baffler, Jessa Crispin wonders about the “curious feminist logic of GOOP” and how the internet is decentralizing and democratizing medicine, for better or worse.
This is, of course, the same internet that tells women their children’s autism is caused by vaccines and that Goop uses to distribute its theory that walking barefoot on the grass helps realign the electromagnetic fields of the body. It’s also the same internet I turned to when I was vomiting up the iron supplements the doctor prescribed for my chronic anemia. He refused to give me anything else, other than the suggestion to “eat more spinach,” but an online forum told me about the easily absorbed nettle tea, which I have been using effectively to control my anemia for years. It’s also the same internet that told me I had scabies or syphilis when really I had an allergic reaction to my soap, and the same internet that tells me my coffee beans carry a toxic mold and are slowly killing me…
Viewed against the sobering backdrop of Western medical history, the Goop turn in female self-treatment can be seen as more than just another jaded journalistic narrative about delusional women and their soft-headed disbelief in science. In important respects, it is also an attempt to wrest control and authority back from a medical community that has mistreated women for centuries. A male-dominated medical world is no longer the authority on the female body—I am, with the help of online message boards, Goop newsletters, and random Google searches for things like “why is my discharge like this” or “how do I get rid of wrinkles” or “can a person eat nightshades and not die.” We could be regressing, then, to something like the oral medical tradition of the medieval midwife, where knowledge is come across sporadically, where anecdote is given as much credence as experimentation, and the knowledge base is decentralized.
For The Oregonian, Bethany Barnes takes an in-depth look at the experience of 16-year-old Sanders, an autistic high school student put through an extensive “threat assessment” (aka, “We think you might be the next school shooter”). Are threat assessments effective? What happens when the behaviors flagged for a threat assessment overlap the symptoms with totally separate physical or neurological issues?
It was easy to figure out why the teen’s attire worried people. Sanders’ signature piece of clothing was a big black trench coat.
Years ago, Mark gave Sanders the riding coat he picked up on a youthful adventure in Australia. Sanders loved the weight of the coat. As a person on the autism spectrum, he welcomed the heaviness. It provided comfort in a world that often overwhelmed him. He wore it no matter the weather. With pride, he would note that when it gets above 85 degrees, it will be 104 degrees inside the coat, a fact he learned in science class. He was so associated with the coat that one time he didn’t wear it, he was marked absent by mistake. Sanders eventually wore out Mark’s old coat and his grandma got him a new one for Christmas.
Now, what had begun as a beloved hand-me-down, an armor that made Sanders feel secure and protected from the world, made him vulnerable.