Marginalized in the Middle: A Rebuttal to the NYT Article on “Beating” #Autism

A few days ago, an article titled The Kids Who Beat Autism appeared in the New York Times.  I needed time to think about and digest what Ruth Padawar, the article’s author, wrote.  I wanted my response to the article to be thoughtful rather than knee-jerk, because there are too many emotional reactions to the piece floating around out there already.  That is not to say, though, that my response is objective.  It cannot be, because my perspective is now forever biased by experiencing autism as the parent of an autistic child.  But, my bias is an important one.  I parent a child who is at neither extreme of the spectrum.  Although she is diagnosed classically autistic, she has no comorbid diagnosis.  She has difficulty with sensory processing, language processing, communication and social interaction, but she is not (typically) self-injurious, she participates to a fair degree in self care.  Her prognosis is such that both my husband and I, as her parents, and the professional team with whom she works, agree that there is a reasonable likelihood that she will accomplish at least some degree of independence as an adult.

My experience has been that autism the way we experience it gets the least amount of attention – both organizationally and in the media.   It is important to acknowledge autistics whose behaviors and characteristics fully disrupt their ability to live independent lives, because these individuals and those who care for them desperately need support and services.  But, this version of an autistic person has become the myopic focus of organizations like Autism Speaks and of the media, both of which paint autism with the broad-stroke brushes of “tragedy” and “epidemic” in an effort to bring attention (and money) to research.  This focus, though, forces those of us who experience autism in the “middle” – not as a “tragedy” that “steals” our children and “burdens” society but as a challenge requiring adjustments, compromises and planning – to continue to fight against stereotypes and misconceptions about what autism is and is not.  On the rare occasion the media presents a “positive” story about an autistic person, it too is an exaggeration, focusing on a small percentage of the autistic community that is unusually successful or gifted (even by neurotypical standards).  In between these two extremes are tens of thousands of autistic persons leading everyday lives – often in spite of a lack of support, acceptance, inclusion or services.

Articles like Ms. Padawar’s continue to marginalize the majority of autistics by leading the public to believe that if someone is not completely nonverbal and incessantly flapping her hands or able to instantly count the number of toothpicks dropped on the floor, she is not autistic or not autistic “enough.”  People like my daughter, who appear to strangers as “normal” and who may even participate in the beginning of social interaction only to fall apart when encountering a negative sensory stimulus, are left most vulnerable to judgment, stereotyping or rejection by neurotypical peers.  Having learned a version of autism that looks only like Carly Fleischmann or Temple Grandin, people do not recognize autism varied from those models, instead seeing autistic traits as standoffishness, undisciplined behavior, rude or as a “spoiled” or “weird” disposition.

From the outset – and still upon reflection – I found the title of the article misleading.  Although there is much yet to learn about autism, one thing we know is that autism is not a disease; it is a developmental disorder.  More particularly, autism is the product of atypical neurology in the brain.  Unlike a virus, bacterial infection, cancer or other disease, there are no truly objective tests and no known cures for autism spectrum disorder. Instead, autism is diagnosed by observation, parent reporting of observations and, where possible, self-assessment.  The diagnostic criteria try to remove as much of the subjectiveness as possible, but any diagnosis based upon human perception and interpretation is inherently less reliable than – say – a blood, genetic or other medical test. It is difficult to know whether a person who was once diagnosed autistic but is later found to have “lost” the diagnosis was properly diagnosed in the first instance.  I don’t doubt that for a small percentage of autistic persons, the treatments or interventions designed to help an autistic person address behaviors that inhibit participation in important life activities – education, employment, independent living – result in mitigation of behaviors or characteristics to the point that an observing psychiatrist or psychologist could not detect the presence of autism criteria.  But, to say this person “beat” autism implies that this person is “cured.”  That, though, is not possible absent a change in neurology. It is akin to saying that a bipolar or schizophrenic person could be cured.  Although one diagnosed schizophrenic or bipolar may mitigate her disabling behaviors with medication and therapy so that the disorder is not readily detectible, she is nonetheless schizophrenic or bipolar, because that is the way her brain is wired.

I try so hard to educate family and friends about autism in an effort to avoid hurtful comments and questions.  Asking me, “When is Helene going to get better?”, “Is Helene getting better?”, or “Why isn’t Helene getting better?” is painful for me on many levels.  It is frustrating (Why would you even ask that? Why not ask just, ‘How is Helene?’); it is guilt-inducing (Am I not doing everything in my power as a parent to improve her quality of life?); it is heart-breaking (Why can’t you just appreciate where she is right now, in this moment, for the beautiful, loving, funny person she is?)  So when a mainstream media outlet, like the NYT, ledes with a headline suggesting that a “cure” is possible, it undoes a lot of work autistics and advocates have done – both internally and externally – to set realistic expectations about autism that are a necessary precedent to the acceptance and inclusion so many of us hope to experience.  It floods my Facebook timeline, Twitter feed and email inbox with incessant and unforgiving reminders that no one is ready to truly accept my little girl.

I did appreciate Ms. Padawar’s inclusion of additional points of view, particularly her inclusion of comments by Ari Ne’eman (who is himself autistic).  Too often, important discussions about autism do not include autistic voices.  I can think of no better expert on what it’s like or what it means to be autistic than an autistic person.  But, as autistics are fond of saying, “If you’ve met one autistic person, you’ve met one autistic person.”  No one autistic self-advocate speaks for the whole autistic population, and the quality of having an autism diagnosis does not necessarily imbue the speaker with unassailable authority.  Autistics deserve a seat at the table, but the invitation is to engage in critical inquiry, not to occupy the entire dialogue.  So, I am deeply troubled that Ms. Padawar did not offer a counter-point to Mr. Ne’eman’s assertion that autism is the equivalent of homosexuality.  That’s an overly bold statement akin in my mind to saying that because I experience gender discrimination because I am female, I know what it’s like to experience discrimination on the basis of race even though I am Caucasian.

In fact, Mr. Ne’eman’s autism-homosexuality analogy is deeply flawed.  While autism and homosexuality are both the product of a particular neurology, homosexuality is indisputably not a disease or disorder.  The state of being homosexual does not require treatments, interventions, medications or therapies (although such things may become necessary responses to the damaging effects of discrimination against, hostility toward or rejection of a homosexual person).  While I understand Mr. Ne’eman’s point – autistics also would not need treatments, interventions, medications or therapies were they not victims of discrimination, hostility and rejection – the analogy fails to account for two salient differences between autistics and homosexuals.  First, autism is medically recognized as a developmental disorder principally because it presents with characteristics that are, unequivocally, disabling (such as compromised auditory processing, lack of communication skills, poor receptive language or extreme sensory reactions / dysfunction). Homosexuality has no disabling features.  Second, homosexuality is not a “spectrum.”  You cannot be a different degree of homosexual than the next person.  This is decidedly not true of autism.

I don’t want to discourage media coverage of autism, and I appreciate efforts to raise awareness in the broader public.  But, I hope that as journalists and reporters delve deeper into the autism community, they recognize and begin sharing stories about the community’s diversity – about the challenges and joys of the individuals not only at either end of the spectrum but also the very many who occupy the space in between.