A sea-change is happening in the world of autism. Just a few years ago, the loudest voices in media coverage of the issue were those of Jenny McCarthy’s “warrior moms,” defending Andrew Wakefield’s now-discredited claim that the combined measles-mumps-rubella vaccine causes autism, while spending hard-earned income on the latest cure for their “vaccine-injured” kids — which could allegedly be found in megadoses of vitamins, chelation therapy to remove heavy metals like mercury from the body, elaborate elimination diets, home hyperbaric chambers and saunas, and untested gray-market drugs.
It’s not hard to understand what motivated these parents: Intense love and concern for their children, along with healthy skepticism of corrupt multinational corporations and government agencies that have proven themselves fully capable of covering up crimes against humanity that resulted in the injury and death of thousands. The mothers and fathers of kids on the spectrum have excellent reasons to distrust the medical establishment — notably its unquestioning acceptance of Bruno Bettelheim’s “refrigerator mother” theory in the 1950s, which cruelly blamed parents for their kids’ developmental disorders, adding shame and stigma to the challenges of raising an autistic child.
Bettelheim’s Freudian claptrap was consigned to the dustbin of pseudoscience long ago — fittingly, by the father of an autistic boy, a Navy psychologist named Bernard Rimland, who surgically dismantled Bettelheim’s imperious nonsense in his own book in 1964, establishing autism as primarily a genetic and organic, rather than psychogenic, condition. A tireless networker, Rimland also founded the National Society for Autistic Children to speed parents’ access to treatments that he felt showed promise. By doing so, he anticipated the self-empowerment of citizen scientists in the digital age.
Unfortunately, Rimland — who undertook Herculean efforts to make his own son, Mark, “normal,” as he put it — was also one of the first parent-advocates to promote Wakefield’s 1998 case series in The Lancet linking autism to vaccines. That study has since been found to have been an elaborate fraud by the British Medical Journal, disowned by its co-authors, and retracted by The Lancet. But the seeds of panic it sowed among a generation of parents are now sprouting all over the world in resurgent epidemics of childhood diseases like the measles and whooping cough, after being kept in check for decades by vaccines. Meanwhile, many of the biomedical treatments championed by Rimland have turned out to be no more effective than placebo or outright dangerous, as well as punishingly expensive for families financially stressed to the limit.
With greater understanding and another decade of research, talk of “curing” autism is fading away, though no one should dispute the need to find more effective treatments for seizures and other physical co-morbidities that some autistic people experience. Instead of obsessing about causes and cures, however, a new generation of parents is proposing something radical: loving their kids just as they are, in all their flamboyant eccentricity, the product of a distinctive kind of human wiring that likely lasts a lifetime. (Even Rimland’s loyal successor at the Autism Research Institute in San Diego, Stephen Edelson, said in a recent interview, “If a practitioner claims to ‘cure’ autism, run in the other direction.”) Instead of inspiring hopelessness, this shift has liberated many parents to embrace and even celebrate their kids’ differences, while focusing on the real challenge of helping them build healthy, happy, and independent lives in a society that provides shamefully few supports, resources, and accommodations for autistic adults.
That’s the message of several groundbreaking books and films in recent years, including Roy Richard Grinker’s Unstrange Minds, Paul Collins’ Not Even Wrong, Thomas Anderson’s Neurodiversity, Priscilla Gilman’s The Anti-Romantic Child, Tom Fields-Meyer’s Following Ezra, and Todd Drezner’s inspiring documentary Loving Lampposts.
At the same time, technological advances like the Internet and social media, text-to-speech software, visual computing, and mobile devices are opening up ways for people on the spectrum — including many who would have been written off as non-verbal or “low-functioning” in previous eras — to boldly speak out on behalf of themselves and their community. It turns out that autistic self-advocates have a lot to say about how they’ve been stereotyped, marginalized, overlooked, and demeaned by so-called neurotypical culture — even by organizations that claim to speak for them. Two of the most powerful pieces of online writing I read this year were by self-advocates whose view of their own lives is informed by the social model of disability: Julia Bascom’s “Quiet Hands” and Rachel Cohen-Rottenberg’s “The Path That Chose Me.” Self-advocates like Bascom and Cohen-Rottenberg proudly own their autistic behavior and atypical cognitive styles, casting light on the ways that monolithic concepts of normalcy oppress everyone who doesn’t fit the mold.
With this sea-change in mind, my favorite book of the year on autism was curated and self-published by a group of parent-warriors with the express purpose of sparing other parents the grief, isolation, and confusion that followed their own kids’ diagnoses. Called the Thinking Person’s Guide to Autism, it offers helpful, positive, pragmatic, evidence-based advice for making the life of your kid and your family more rewarding and more joyful, starting today. I can’t think of a better holiday gift for someone with a loved one on the spectrum. With current estimates of autism prevalence running at 1 in 110 people in the US, the book deserves a wide readership.
Covering a wide range of nuts-and-bolts subjects — from strategizing toilet training and and planning fun family outings, to helping your kid cope with bullying, to identifying the issues that a skilled speech-language therapist can work on with your child, to spotting and avoiding “autism cults,” to navigating byzantine special-needs bureaucracies and providing your child with appropriate assistive technology, to fighting for your kid’s right to an individualized education — the Thinking Person’s Guide to Autism is bracingly free of dogma, heavy-handed agendas, and pseudoscientific woo. What distinguishes it from, say, the fine guide for parents recently made freely downloadable by the National Autism Center, is the heart, soul, fierce intelligence, and subversive wit of the authors and editors, which shines on every page. Offering observations from parents, professionals, and autistics themselves, the book is a welcome dose of optimism and uncommonly good sense.
Many guidebooks for the parents of autistic kids are dry, clinical, and relentlessly grim; by contrast, this book is about real families facing ordinary situations with grace, grit, and humor. Editors Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham, and Carol Greenburg are prolific bloggers and tweeters on the war-torn autism frontier every day: battling misinformation and quackery, standing up for science and evidence-based medicine, and crucially, building mutually beneficial alliances between parents and self-advocates. Their message is: We’ve been there. We know. And we want to help you become your kid’s most powerful ally while respecting and celebrating his or her unique identity.
There’s also a cheeky irreverence to the tone of the essays — many of which originated in the blogosphere — that is utterly refreshing. I can’t think of another book on the subject that would include the statement, “Children with autism are well known for masturbating in public. (And who can blame them?)”
“My son Leo is 11 and has high-octane autism,” says Des Roches Rosa when I ask her about the genesis of the project. “I’d been blogging about parenting and autism since 2003 and writing columns as BlogHer’s contributing editor for parenting kids with special needs for a year. The reactions to my posts had been great, but I remained frustrated by the amount of negativity and flat-out misinformation pervading the Internet and traditional publishing, and worried about a constant stream of people entering the autism communities and getting misdirected or outright hoodwinked. I’d been ranting about it for a while, and so had Jennifer and Liz, so one day we just said, ‘Fuck it, someone has create a one-stop, comprehensive, evidence-based autism handbook, with perspectives from autistics, parents, and professionals.’ So we took the plunge.”
The book doesn’t make light of the diligent work required to make the world a more comfortable, supportive, and joyful place for atypically developing kids, while helping them cope with the stresses and sensory challenges that are an inevitable part of life on the spectrum. But it also makes clear that one of the toughest things to deal with as a parent is the pervasive view of autism as a tragedy. The deeply networked science-and-tech-literate parents who put the book together have happy children who are respected and treasured for being who they are, rather than pitied as unwitting victims of a Big Pharma conspiracy. (That was cherubic Leo Rosa rocking the iPad in a clip played at Steve Jobs’ last keynote).
“You will think you can’t handle it. You will be wrong,” writes Jess, one of the book’s contributors. “This is not an easy road, but its rewards are tremendous. Its joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.”
There are valuable lessons in this book even for those who have no direct personal experience of autism. Here’s Willingham, the TPGA team’s science editor, speaking frankly about what happens on the rare occasions she tells people her son is on the spectrum:
What response do you get from people when you mention your child’s difference or try to explain it to them? I can categorize our responses into three distinct groups.
From total strangers—and my mentions of autism in this context are rare—the response is pity. Clearly pity, and with it a lack of understanding of what I’m even talking about. And then, of course, I find myself struggling to clarify why pity simply isn’t necessary, to get across with pith what a great person my son is, what a total joy it is to have a wonderful person like him in my life. It’s rare that I bring up autism to strangers, although if I were savvier, I could use it as a way to enhance awareness and downgrade the pity response.
From casual acquaintances, such as parents of other children and periodically from others closer to me: “I don’t like labels.” “He seems like a pretty normal kid to me.”
These responses set my teeth on edge. They speak to so many things: Diminishing my son’s struggles. An accusation that we’re magnifying his struggles, or worse, have sought and gotten the “diagnosis du jour” of autism for a child who’s merely quirky. An implication that if we just left him alone without labels, he’d be just fine.
Of course, I have to forgive these responses. Sometimes, they’re just well meaning, an effort to say, “Well, even with that difference, he’s just a kid like other kids.” Sometimes, it’s exactly the implied criticism I think it is. But I must forgive. They know not of what they speak. How could they?
Invariably, these responses come from parents of neurotypical children. The fact is, they just don’t get it. They never will. Sorry, but unless you’ve spent hours wondering why your child’s anxiety leads to nonlinear, bizarre suicidal ideation at age three, you’re not gonna get it. Unless you look at your nine-year-old child and marvel at how far he’s come that he can say, “I’m going to go interact with that child over there,” and wonder if it’s the intensive therapies or your own efforts or his efforts or all of the above, you’re not gonna get it. Unless you’ve spent days fending off perseveration over strawberry plants because you unwittingly drove by a plant nursery, you’re not gonna get it.
One of the most progressive aspects of the Thinking Person’s Guide is that it includes a section of essays written by autistic people themselves, which gives it an intimate, insiders’ view of a way of being that is all too often depicted as an impenetrable enigma (represented by the ubiquitous puzzle-piece iconography employed by many fundraising organizations, which many self-advocates have come to detest). Their accounts indicate the pressing need to debunk stereotypes of autistics as either amazing savants or automatons who lack empathy, and to create neurodiversity-friendly workplaces — needs that are not addressed by the usual star-studded “autism awareness” campaigns that raise millions of dollars a year to scan genomes and hunt for new drug targets.
Rachel Cohen-Rottenberg, who has a new e-book out called Blazing My Trail, contributes a poignant reflection after being diagnosed in mid-life:
I have no inclination to ask who I might have been without being autistic. Being autistic is intrinsic to my life experience, to my insight, and to the gifts I bring. The One Above made me just as I am, and I respect that… The world is often not a safe and welcoming place for autistics. I have been bullied, and ignored, and left behind, in many different ways, all my life. And yet, I don’t wish I were different. I wish the world were different. I wish that more people defended the bullied rather than the bullies; I wish that more people took the time to get to know me and find out what a great good friend I am; I wish that more people were sensitive to all the things that autistic people need in order to live our lives with more joy and less fear, more inclusion and less loneliness.
For self-advocate Corina Lynn Becker, getting a diagnosis at 17 was not shattering, but empowering:
I want you to understand, that from my point of view, I did not suffer from autism. That is, autism does not cause me pain. It creates struggles and challenges, yes, that can be disabling, but the pain and suffering that I went through happened because of two things: being undiagnosed and not having the knowledge for supports and accommodations.
In other words, I struggled because nobody knew exactly what I was struggling with, and because I did not have the words to describe my difficulties. For me, the rising autism rate represents a rising rate in awareness and knowledge and a hope that fewer and fewer children will be mis-, under- and un-diagnosed, until not one child slips through the cracks. With that hope, there is a chance to make a difference, to ensure that each child gets exactly what he or she needs and requires in order to succeed.
For parents who are rapidly reorienting in the wake of a child’s diagnosis, this book can play the role of a seasoned mentor who relieves the burden of unnecessary worry and grief while providing a detailed map of the road ahead. Here’s Susan Walton on the importance of building a network of other parents who understand:
I have friends whom I met sitting in waiting rooms during the first weeks following my son’s diagnosis. When we looked at each other back then, our eyes told our whole story. We were all sick at heart and desperately trying to make sense of the news and figure out what to do. And it is amazing how strong we look to each other now. When we run into each other or find time for a coffee date, we see entirely different people looking back. Even as we are sharing news about the latest round of problems in our lives, the difference is amazing. We are in control and things are moving forward every day. We see battle-scarred but victorious soldiers in each other. These are valuable friends indeed.
The takeaway from the Thinking Person’s Guide is: You can do this, and you will become a wiser and stronger person for helping your son or daughter grow into the most creative, aware, loving, self-confident, and independent person that he or she can be. I’m grateful for this uplifting book, which has the potential to transform lives and society for the better — in this generation and the next.