By Amy S.F. Lutz
— Much of what we know about autism has changed since my son Jonah was diagnosed in 2001, but the metaphors we use to conceptualize it have remained largely the same. Portia Iversen, founder of Cure Autism Now, writes in her book "Strange Son" that she thought of her son's autism as a "deep well" he had fallen into. Jenny McCarthy describes the "window" through which she struggled to free her son from his autism. Arthur Fleischmann states in Carly's Voice, his account of how his severely autistic daughter developed the ability to communicate using a keyboard, that "There was a wall that couldn't be breached, locking her in and us out." The more profoundly impaired the child, it seems, the more likely these images of physical barriers are to crop up, as parents search desperately for the "intact mind" (Iversen again) they believe is there, somewhere deep down, despite often brutal symptoms that suggest the opposite.
It's not just the hope of desperate parents that fuels this quest — although, as one of those parents myself, I would never underestimate our ability to persist in our hopes and efforts even in the face of abundant evidence. Over the past decade, our faith has been validated by the emergence of several seemingly low-functioning autistics whose "intact minds" have been revealed through their brilliant writing. These celebrities, including Amanda Baggs, Sue Rubin, Tracy Thresher, Larry Bissonnette and others, speak minimally, if at all, and require support for even the most basic of life skills. Yet their blogs, videos and written commentary — as seen on major networks such as CNN and in Academy Award nominated documentaries — have inspired countless parents around the world.
Jonah was 4 years old when he started writing in chalk on our driveway without ever having been taught — although his phrases, like "FBI WARNING," were admittedly less communicative than Carly Fleischmann's complaint, "HELP TEETH HURT." Despite that, I really believed, for many years, that Jonah would develop into the next Tito Mukhopadhyay, the Indian boy featured in Iversen's "Strange Son," who published several books of poetry despite autism so severe he was nonverbal; prone to constant, repetitive movements, or "stims"; and, not infrequently, disruptive, noncompliant, and even aggressive with his mother.
Now that Jonah is almost 14, I've come to accept that what he writes and says (he learned to speak in a rudimentary fashion when he was 5) pretty accurately reflects what he's thinking: "No school," "BIG orange juice," "Mommy and Daddy leave and Jonah stays at Costco" (so he can ransack the bakery department). Not that we will ever stop pushing him, working to expand his limited communication and social skills, while trying to maintain control over the frequent and unpredictable rages that necessitated a 10-month hospitalization when he was only 9 years old — rages that made him pound his own face bloody before turning his aggression outward in attacks that left us scratched and bruised. But as far as an "intact mind"? If it means a level of articulation and abstract reasoning belied by everything Jonah says and does — well, I no longer pray for my son to be someone he's not.
But the bigger question is: Should I have stopped praying years ago? Should parents with young autistic children expect a breakthrough like those in the high-profile cases? Evidence suggests many of these people are either not as high-functioning — or in some cases not as low-functioning — as has been described.
Shortly after Amanda Baggs was interviewed by Sanjay Gupta on CNN and drew nationwide acclaim, several former friends and classmates took to the Web in bewilderment. Their testimony was consistent. They knew Baggs, either from a summer program for gifted teens or from Simon's Rock College, where she was a student in the mid-1990s. During those years, she spoke, attended classes, dated and otherwise acted in a completely typical fashion. How to reconcile the accomplished student she used to be with the woman they saw on TV in a wheelchair, rocking, smacking herself in the head, flapping her hands and making unintelligible noises?
I exchanged emails with one of her old acquaintances. Although he confirmed that the statements he wrote online were accurate, he couldn't say anything else: Baggs' lawyer had contacted him and warned that such statements could result in legal action.
The objection is surprising for many reasons, not the least of which is that Baggs doesn't really dispute these details of her teen-age years. On her blog, Ballastexistenz — which has been called "the most-read of all autistic blogs" by disability scholar James C. Wilson — she confirms that she was identified as gifted, went to college, and "produced plausible-sounding speech sounds . . . in the past." She also explains that she was diagnosed with autism at the age of 14 (joining a long list of diagnoses she says she has received over the course of her life, including bipolar disorder, dissociative disorder, psychotic disorder and schizophrenia), and that she lost all functional speech in her early 20s.
This story appears to be clinically unprecedented. "Very high-functioning individuals might not be diagnosed until their teens or later, because of their milder symptoms," explains Alex Kolevzon, clinical director of the Seaver Autism Center for Research and Treatment at Mount Sinai School of Medicine in New York. But, he adds, patients who are diagnosed relatively late display nothing like the incapacitating impairments Baggs seems to suffer from now. And Kolevzon has never seen patients lose the ability to speak in their 20s due to autism. His observation is supported by the findings of the Interactive Autism Network (IAN) at Kennedy Krieger Institute, which maintains the largest online autism database in the country. Of almost 10,000 subjects, IAN researchers report, "Of those diagnosed in adolescence, no child whose primary regression was in 'speech and language' incurred the regression after age 5 years."
The diagnoses of Sue Rubin, Larry Bissonnette and Tracy Thresher, on the other hand, have never been questioned. Rubin, featured in the Oscar-nominated 2004 documentary "Autism Is a World," was considered severely intellectually disabled for most of her childhood, with a tested IQ of 29. Bissonnette and Thresher star in the 2011 film "Wretches and Jabberers"; Bissonnette was institutionalized into his 20s, while Thresher grew up in special-ed classes. Although all three are capable of speaking simple words or phrases, their lives were transformed when they were introduced to Facilitated Communication (FC), a method of supported typing. A facilitator holds the user at the wrist, elbow, or shoulder, as is the case for Thresher and Bissonnette, or the facilitator may hold the keyboard in place, as is the case for Rubin. With this help, all three produce sophisticated written work that has enabled Rubin to attend college and Thresher to serve on two state-level disability committees in Vermont, where he lives.
However, FC has been exhaustively studied since Douglas Biklen (the producer, incidentally, of Wretches and Jabberers) brought the technique to the United States from Australia in 1989. Dozens of controlled studies have confirmed that the products of FC reflect the (usually unconscious) movements of the facilitator, not authentic communication by the user. The very few studies that support FC are generally anecdotal or inconclusive; one of the most referenced reports, a 1996 study by Cardinal et al., actually found that success "only occurred with prolonged practice of the experimental task, and there were many inconsistencies in the responses, even after prolonged practice." The case against FC is so strong that it has been rejected by the American Academy of Pediatrics, the American Association on Intellectual and Developmental Disabilities, and the American Psychological Association, among many, many other groups.
Despite this overwhelming evidence, the cases discussed above have had a huge impact on the autism community, which has increasingly been divided between those who consider autism a disability and those who believe it is merely a different, not worse, way of thinking and interacting with the world. This latter position is espoused by the autism rights movement, also called the neurodiversity movement, which has evolved over the past two decades from an ad-hoc association of individuals with high-functioning autism or Asperger's syndrome and their families into a powerful lobby led by organizations such as Autistic Self-Advocacy Network and Autism Network International. ANI's founder, Jim Sinclair, wrote the famous 1993 essay "Don't Mourn for Us," which accused parents who long to cure their children's autism of really hoping "that one day we will cease to be, and strangers you can love will move in behind our faces." Today, neurodiversity activists sit on the Interagency Autism Coordinating Committee (which advises the National Institutes of Health on how to allocate its autism research budget) and the National Council on Disability.
Since its inception, the movement has been lambasted by parents of lower-functioning autistic children for pursing what they consider to be an exclusionary agenda focused on civil rights, societal attitudes and support. These advocates, such as Harry L. Doherty, who writes his Facing Autism Symptoms in New Brunswick blog about life with his autistic son, Conor, say that this "irrational" mission distracts and draws funding from research on medical treatments and possible cures.
But to counter these critiques, there is always Amanda Baggs to echo the popular neurodiversity argument that handicap is in the eye of the beholder: "I find it very interesting by the way that failure to learn your language is seen as a deficit, but failure to learn my language is seen as so natural," she has written. Or there is Larry Bissonnette, who (through FC) proclaims, "We are one branch of many on a . . . diverse and wonderful beauty tree." Lower-functioning autistics, it seems, are on board with the movement after all. (Sue Rubin is a notable exception, in that her writings (through FC) reflect a strong desire for a cure, but she often pops up in these debates because of her apparent capabilities.)
Neurodiverse sentiments such as these by Baggs and Bissonnette carry a lot of weight, since the public accepts them as the genuine insights of people living with severe autism. They have contributed to a romanticization of mental illness that Judith Warner, author of "We've Got Issues: Children and Parents in the Age of Medication," has called "dangerous" because it can keep parents from getting their children the help they need. Her point isn't hypothetical. A 2010 case study written up in Virtual Mentor, the American Medical Association's online journal of ethics, featured parents who refused all treatment for their autistic son because they were "members of the autism self-advocacy movement."
On a political level, "neurodiversity advocates have definitely succeeded in implementing their agenda," says Alison Singer, founder of Autism Science Foundation and a member of the Interagency Autism Coordinating Committee. "You can see it in the strategic plan [of IACC] — there are more studies focused on higher-functioning adults and the services they need, such as finding employment. But because we're reallocating money, not increasing the budget, that means shifting funds away from the needs of lower-functioning children, who need treatments, for example, to help them control self-injurious behaviors." And that shift may become more pronounced once the new edition of the Diagnostic and Statistical Manual of Mental Disorders is published in May. By eliminating the Asperger's syndrome diagnosis, as the DSM-V is expected to do, and redirecting all those high-functioning individuals into the autism diagnosis, the overall percentage of low-functioning autistics will drop — making it even easier for the high-functioning lobby to shunt aside those who might technically share the same diagnosis but have completely different needs.
So what happens to neurodiversity if its lower-functioning supporters are discredited? The movement is exposed for what it is: a group of high-functioning individuals opposed to medical research that, as Singer puts it, "they don't need, but my daughter does. If she were able to function at their level, I would consider her cured."
I'm not saying it's impossible for nonverbal autistic individuals to communicate using a keyboard. YouTube videos show Carly Fleischmann and Tito Mukhopadhyay typing independently, although the lack of controlled investigation of their abilities, among other red flags, continues to concern skeptics. What I am saying is that a real autism rights movement would recognize that people are truly neurodiverse, with brains of very different levels of functioning, instead of implying that we are all the same, with "intact minds" that just need to be accessed. It would include the needs of the 20 percent of the autistic population that is nonverbal, the 50 percent that is intellectually disabled, and the 30 percent that suffers self-injurious and/or aggressive behavior. As Kolevzon points out, these populations have "tremendous overlap," meaning that there are tens of thousands of individuals who are both nonverbal and intellectually delayed, with dangerous behaviors that, untreated, can prevent them from living at home, going to school, and participating in the community. "Entirely missing here," Warner has written, "is the notion that there is a world of difference between unique personality traits that may be quirky, annoying, or charming, and actual signs of pathology. Or that the difference between personal style and pathology resides in pain, distress, and impairment."
I'd like to believe that those who argue the neurodiversity position do so out of ignorance — and I don't mean that as an insult. Amanda Baggs, Tracy Thresher and others offer a sanitized version of low-functioning autism, which is all the public sees. The kids with the unfortunate trifecta of autism, intellectual disability and dangerous behaviors aren't on TV singing with Katy Perry. They're in one of the 11 inpatient hospital units in this country dedicated to this population (many with waiting lists months long), in residential treatment facilities, or barely managed at home behind closed doors. It's only once you're thrust into this world — as I was, when Jonah broke a teacher's nose when he was in kindergarten — that you see how many there are: kids who have blinded themselves or bruised and concussed their parents and siblings or who spend their days in highly restrictive equipment to keep them from doing so. These children will never write one blog or produce one video. Despite that — or rather, because of that — they couldn't be more convincing. And any portrayal of autism that glosses over their profound disability closes the door on them all over again.
Lutz writes about autism and other issues she's encountered as the mother of five children and is currently working on a book about ECT in the pediatric population. She is president of EASI Foundation: Ending Aggression and Self-Injury in the Developmentally Disabled, and can be reached at firstname.lastname@example.org.