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.

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

  1. Dani,
    Your posts are always so thoughtful and packed full of genuine, heartfelt sincerity,I love that. I am grateful for your insights and that you take the time to share them.
    Hugs and kisses to all of you
    Stef

  2. Really great response. When T isn’t in the midst of one of his manic cycles, he, too, is very much middle. Neither severely nor mildly affected. Unknown prognosis. Unknown future.

    • ProfMomEsq says:

      That’s just it, isn’t it? Unknown prognosis and unknown futures are the hallmark of so many of our experiences, and it takes time, support and a lot of hard emotional work to come to terms with those uncertainties so that we can live in the moment instead of a constant state of worry/fear/anxiety. Articles like this one, which suggest the possibility of a “predictable” future attainable by only a small few and for reasons not at all understood, upset a tenuous grasp on taking one day at a time. (((you)))

  3. Gretchen S. says:

    Yes!Yes!Yes! I could not of said it better myself! My daughter is in the middle and she appears “normal” to everyone unless it is pointed out that she is not having true interactions, they are scripts to get her through the interaction, etc. My son….once he can speak where people can understand him, he will be very in the middle too. The “Middletons” need encouragement, support, and acceptance just like the rest of the spectrum.

    • ProfMomEsq says:

      Thanks for your comment, Gretchen. Helene’s language is predominantly scripting as well – sometimes with unbelievably adorable and amusing results. But, when she interacts with people who are not familiar with the foundation for her scripts – Yo Gabba Gabba, Wonder Pets, Finding Nemo – her social interactions falter, and I know that is frustrating for her. The more people learn about autism and how it manifests, the greater the chance a peer will recognize scripting as communication and the greater the likelihood of engagement. This is my hope. ❤

  4. Gigi says:

    Yes, yes, and YES!!! Thank you for your thoughtful and thought-provoking response….

  5. Dani G says:

    Yes. So relating to this. Thank you for putting all this into words.

  6. […] Marginalized in the Middle: A Rebuttal to the NYT Article on “Beating” #Autism. […]

  7. Miz Kp says:

    WOW! This post is so on point. A thousand thank yous for speaking for the many individuals with autism who are in the middle.

  8. akbutler says:

    You just described my kid and my family and my perspective perfectly. Thank you.

  9. Cathy S. says:

    I appreciate your recognition that homosexuality is not any sort of deficit, but want to point out that you can be different degrees of homosexual / heterosexual. Maybe you are calling all the mixed attraction folks bisexual and therefore don’t consider that you can be degrees of homo/heterosexual, but there are certainly many people who identify as homo or hetero but who are attracted to both genders to some extent.

    • ProfMomEsq says:

      Hi, Cathy. Thank you. I understand what you’re saying. Please read my comment to Karla, above. I think we’re on the same page, and I hope it clarifies the distinctions I was trying to draw.

  10. All I can say is Bravo! My son is more or less in the middle, you said it better than I ever could.

  11. Karla Fisher says:

    I think that the majority of autistic people are “in the middle”. In fact by the very definition of a bell curve that is true. About homosexuality and the comparisons…

    1. DSM III in fact did list homosexuality as a disorder. (Just a correction for you and for your perspective)
    2. There are, in fact, varying degrees of being homosexual. Some can pass as straight, others not at all. You can be top or bottom or bi. It is all variations on the theme homosexual. So while being homosexual is indeed a binary, the way one experiences that thing is as varied as the people who have this neurology. Oh and yes… It is also part of ones makeup/neurology.

    Just FYI

    • ProfMomEsq says:

      Karla:

      Thank you for your comment. May I offer some counterpoints? I apologize in advance if this seems an overly semantic response. I don’t intend it that way. I believe the distinctions are not without difference but are truly important.

      First, I am aware that the DSM-III (and iterations back to DSM-I in 1952) classified homosexuality as a disorder or psychopathology until 1973. Influenced largely by Alfred Kinsey’s work during the 40s and 50s but later to a degree by Evelyn Hooker’s work, the APA revised its prior, erroneous presumption that homosexual attraction was a deviant behavior rather than a *normal* variant of human sexuality. This change, I think, underscores the flaw in analogizing autism and homosexuality. While autism and homosexuality may both be a product of one’s neurology, there nothing about a homosexual person’s neurology that is disabling. (Again, putting aside sociological issues and external response to homosexuality or to autism for that matter).

      Second, I absolutely agree that there are varying iterations of human sexuality, I’m just not sure they lie along a spectrum, because one would have to have to assign qualitative difference to heterosexuality and homosexuality to create the needed continuum. How do we do that? By the frequency with which one chooses or is enticed to choose a same sex partner versus an opposite sex one? By quantity of (probably stereotypical) personality characteristics? In my mind, variations on a theme (as you collectively describe different types of homosexual behavior) is different than a spectrum of behaviors, because a spectrum implies the ability to classify something between two points that are opposite extremes. In fact, the diagnostic criteria for autism specifically call for observation and interpretation of frequency and severity of the observable behaviors or characteristics identified as indicia of autism spectrum disorders to render a diagnosis.

      All of that said, I do understand the motivation for the analogy. Just as first the medical community and later society (albeit still a work in progress) came to accept homosexuality as another version of “normal,” many autistic self-advocates believe that an “optimal” or “most positive” outcome would be similar acceptance of autistics. That is a laudable goal. But for many autistics – including my daughter – her neurology does not cause offense to others’ aesthetic or religious sensibilities (most of the time – I’ve gotten my share of judgmental-staredowns when her anxiety attacks). It creates very real, readily observable and terribly frustrating obstacles for her in communicating her needs, wants and feelings. What I don’t want is “acceptance” that equates itself with the absence of a need to accommodate.

  12. I don’t think the one thing we know for sure is that autism is not a disease. Nor do we know that a persons neurology can’t be changed. In fact this is what the differing abilities of the children who beat autism is suggesting. My youngest son’s is certainly healing from autism and has even had the label removed from his IEP because I treat his condition like a disease and use nutrition and detox to augment his immune system.

  13. […] Marginalized in the Middle: A Rebuttal to the NYT Article on “Beating” #Autism (profmomesq.wordpress.com) […]

  14. caytejames says:

    There’s an argument to be made that being autistic doesn’t necessarily warrant treatment either.

    And the wee fact that up until not-very-long-ago, attempting to force “treatment” upon homosexuals in order to try to turn them into heterosexuals. The fact that gay people were *subjected* to treatment doesn’t make it right. Who is to say that in a decade or two the same won’t be said about folks on the spectrum?

    (ABA? Is Skinnerian condition that semi-regularly tips over into flat-out torture. My 6 yo’s BFF is a non-verbal little girl with autism and an iPad “talker”… and her occasional violence seems clearly tied to the ABA she’s subjected to. If you made my NT 6 yo sit in a chair and touch her nose 20x for skittles? She’s humor you for a bit & wander off. Try to stop her? Fourteen times in a row? Epic tantrum. Keep at it? Twenty more times? There’s an excellent chance she’d shove you out of her way. And I wouldn’t blame her!!).

    ***

    My family includes many members of Club Spectrum — though my train-obsessed 9 yo nephew is the only one with a formal diagnosis. Two of my equally train-obsessed uncles probably would be too, had they been born 40+ years earlier.

    My parents are academics, so my sister and I few up as faculty kids (I’m 41, she’s two years younger). In the materials science and physics departments, a good 1/3 of both my parents emeritus colleagues would likely have been diagnosed on the spectrum had they too been born 40+ years later… and ditto for their then-grad students. Nearly half my parents *current* grad students are.

    All those older, untreated autistics? Who got tenure at a pretty big deal, land-grant, research university alongside my parents? Did more or less fine.

    My parents undiagnosed former grad students? Who got no “treatment”? Don’t seem to be worse off either.

    There are rather a lot of people out there with all their proverbial balls in the “brains” basket, with few left over for the “social skills” basket. And the world is pretty tolerant of them — in grad school, my advisor’s lab was moved across campus and inordinate expense in the wake of the Great Snowball Earth Argument with a colleague (neither could be civil to each other in passing, so the lab got moved. Nobody batted an eyelash. It’s normal in academia).

It's boring when I do all the talking around here. Speak now, while you can get a word in edgewise.

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