The New York Times: Understanding Autism single issue magazine is a collection of 24 previously published NYT articles written between 2014 and 2019. The articles are divided up into four sections: Child and Family, Autism and Science, Aiding the Autistic and Autism in Our Culture. Since all of the articles are online, I have included their links at the bottom of post.
The magazine’s release appeals to the autism-curious public, surfing the wave of autism related media that has been sweeping through mainstream television and news. My question is whether the New York Times’ message is as beneficial for autistics as their timing is for them.
Difference and Disability
We need to start with how society views differences. In general, there are two perspectives: the pathological view and the cultural view. The pathological view sees difference as a disability that needs to be identified, diagnosed and cured so that a person can become a functional member of society. In contrast, the cultural view sees difference as an equally valid way of functioning, and that you are only disabled by how accessible the world is around you.
For instance, in the case of an autistic who doesn’t speak, the pathological model would look for the mechanism causing the dysfunction, and try to correct it so that the person is able to speak. Conversely, the cultural model views speaking as only one way of communicating, sign language as another, technology as another; whatever the case, the community will adapt to the person’s needs.
Though everyone claims to want “what is best for the autistic,” the community around us is often divided between these two perspectives. Usually (though not always), the researchers, doctors, therapists and neurotypical families are on the pathological side looking for the cause, diagnosis and cure of autism, whereas autistics are on the cultural side looking for access, acceptance and inclusion. You can probably guess which perspective media outlets give more airtime, and the NYT is no exception. I’m going to use this review as an opportunity to bring to light how the pathological viewpoint impacts us as autistics.
Whether a person prioritizes cure over inclusion is often made evident by their language. The broadest example is with “identity first” or “person first” language. Identity first is when I call myself “autistic,” and person first is when I say “I have autism,” or someone calls me a “person with autism.” Ron Suskind interviews Judith Newman for a review of her memoir about raising her autistic son Gus. Suskind quotes that she is bothered by the phrase “person with autism” and that it
“suggests that autism is something bad that one needs to distance from. You’d never say ‘a person with left-handedness’ or ‘a person with Jewishness.’ Then again, you might say ‘a person with cancer.’”from “A Family Memoir Makes the Case that Autism is Different, Not Less,” by Ron Suskind, p 82.
Most autistics would agree, and many of us use both. (I guess people will have to learn to read between the lines XD)
So, as I read, I kept track of the words used to describe us. I noticed that the few cultural-leaning articles tended to use “autistic,” “on the spectrum,” “difference,” and “neurodiverse.” Likewise, the articles told from a pathological perspective tended to use person first and illness adjacent language like “has autism,” “disorder,” “condition,” “problem,” and “dysfunction”. I then started to notice that besides labels, there are much more subtle ways that the NYT uses a pathological lens to refer to autistics.
Autism and Medicine
The section called Autism and Science, introduces the origins of the pathological perspective. To remain objective, researchers attempt to separate the body from the person. In the case of autism, what happens is that the scientist will talk about the autistic brain as if it is separate from the autistic experience. As a result, articles written about autism tend to use metaphors to avoid mentioning the autistic person and the autistic experience at all, which gives the reader a skewed sense of reality. Here is an example about the genetic mapping of the brain:
“The result from all this work is a computer model for brain genomics that scientists can search–a database that charts specific genetic addresses in the brain and reveals which genetic and biological processes are active there, and at what point during maturation.”
“I see it as foundation work, and an investment that will pay off in giving us a far richer context to develop new hypotheses and study these disorders.”from “Mapping the Brain’s Genetic Landscape,” by Benedict Carey, p 37.
A second example talks about using baby teeth to measure chemical exposure during fetal development:
“[They] form a new layer each day, growing in what he called an “incremental archival manner.” The layers can capture traces of chemicals, so that they serve as “biologic hard drives,” records of what exposures occurred during fetal development, and when they occurred, in a manner similar to the rings on trees.”from “Baby Teeth Can Link Pregnancy and Autism,” by Perri Klass, p 40.
We are so used to hearing scientists discussing the human body this way that we don’t question the implications for the people they study. Talking about the autistic brain without connecting it to the autistic person oversimplifies reality. Autism isn’t a lump that can be cut away from the person and put in a petri dish; it permeates our bodies and experiences and that fact is rarely acknowledged. More importantly, objective language doesn’t remain contained within medicine. When it leaks into other aspects of our lives, it morphs into dehumanizing language that carries with it the goal of isolating autism from the individual.
Autism in the Workplace
In the section called Aiding the Autistic, we get a sense of autism in the business sector. Presently, employment is a major concern for us. Eli Gottlieb, a sibling of an autistic quotes:
“Unemployment among adults with autism—most of them higher functioning than my brother—is common. An estimated 90 percent of adults with autism are unemployed or underemployed.”from “Adult, Autistic and Ignored,”by Eli Gottlieb, p 22
These numbers put pressure on those who are able to find work, to stay, even if the employer isn’t inclusive. The pathological language in this case often refers to whether our differences are good for the business’ bottom line. Susan Dominus writes about a tech agency called Auticon that employs autistics:
“Major technology businesses like Microsoft and SAP have made significant efforts over the past several years to hire more people with strong cognitive skills who are on the spectrum, recognizing that they represent untapped potential in the job market.”
Hiring people with brains more adept at doing a specific job is a lucrative move. But employment often means that we have to hide the parts of us that don’t fit the culture of the employer. Later, in the same article, Dominus quotes:
“A culture of acceptance occasionally conflicts with a training environment intended to prepare the staff for the possibility of working in a more typical office. […] Beam saw a morning greeting as the bare minimum of office socializing, a nicety they might as well endure, if only for practice.both quotes from “An Office with Room for Understanding,” by Susan Dominus, p 46
Again, this seems practical, if you are viewing autism through the pathological lens. That the training of the autistic takes precedence over how they naturally function tells us that to be an acceptable, productive member of society, autistic people have to learn to act like neurotypical people.
As subtle as this language may seem to the general public, autistics feel this distinction acutely. In fact, the last line of the very next article, about another agency advocating for neurodiversity in the workplace, is a quote from their first employee: “I want an employer to see me as a person. Don’t hire me because you want to look better for your investors.”
Autism at Home
Articles about community and family life are scattered throughout the remaining sections. I found distinguishing between the pathological and cultural language patterns most difficult in the articles about families. The families presented are caring people who clearly want the autistic family member to have every opportunity (note that this is not the case for all of us). The language is often mixed between wanting the world to be accepting of autism, and wanting the autistic to be, well, cured.
For those of us who are able to articulate this dynamic, it is one of the trickiest parts of the diagnosis. Jennifer Malia, the lone autistic author, who also happens to be an associate professor of English and a mother of three, went undiagnosed into her 30s. After she and her daughter received their diagnoses, she had to face her husband’s suspicions that she had manipulated the psychiatrist to get what she wanted. Fearing the dissolution of her marriage, she wrote:
“Autism wasn’t just a medical diagnosis: it was part of our identities. To reject our autism was to reject us.”from “Mother and Daughter, Both with Autism,” by Jennifer Malia, p 16.
And she is not alone in this feeling. She isn’t saying that the diagnosis isn’t of interest to her. She is saying that if we have to and are able, we eventually choose living a life that is inclusive of autism over living with feeling unacceptable the way we are.
Then there are those autistics whose inner world is yet unknown. They often don’t have a choice whether their carers accept and include them. They must rely on their family to listen to the autistic community and avoid the behaviour and language that rejects who they are. Which brings us to my final and most painful point.
What concerns me, besides the prominence of the pathological message, is its history. Further into the reading, Judith Newman moves on from her disdain for person-first language, and reveals what she never wants Gus to do:
“It is very hard to say this out loud. Let me try. I do not want Gus to have children.”from “A Family Memoir Makes the Case that Autism is Different, Not Less,” by Ron Suskind, p 82.
Without using so many words, Newman is talking about eugenics and sterilization. If we step back, history shows that the straight, white, able human is the end point of this kind of pathological rhetoric. As a result, the government wrongfully singled out many communities who were perfectly capable of bearing and raising children as not fit to reproduce. Thousands of people were sterilized against their will: Black women, Puerto Rican women, Indigenous women, Deaf people, people in mental health facilities and prison inmates. Together with the fact that forced sterilization is legal in many states if the guardian agrees, sterilization isn’t off the table. So, what does it mean when it shows up, unacknowledged, in a magazine called Understanding Autism?
I realize that Newman’s feelings are common among parents of autistics, but since this magazine is geared more toward the broader audience, why include it? The magazine is about understanding autism, not the darkest recesses of our parent’s minds. At this point, I went online to see if there were other articles the New York Times passed over that they could have included instead. The first article that came up wasn’t from the NYT, it was a scholarly article about the NYT called “Analyzing the Discourse Surrounding Autism in the New York Times Using an Ableism Lens” by Alshaba Billawalla from Disability Studies Quarterly.
The study they conducted was “an analysis of the coverage of autism in the New York Times from the time the term autism first appeared (1973) to 2012.” Which, in the context of this magazine, is 2 years before the first article was written. Their thesis is this:
“One could say that the medical and neurodiversity view of autism are based on different ability expectations. By using an ability expectation and ableism lens, we can identify which abilities are seen as essential over other abilities and what effect the favoring of certain abilities over others has in society, specifically for individuals with autism.
Overall, the analysis of the discourse surrounding autism in the NYT adds one piece to the puzzle of the public face of autism; what individuals who read the NYT are exposed to and what implications this may have. It allows for inferences to be made about how the coverage surrounding autism can influence public perceptions and attitudes towards autism and what consequences this may have for individuals affected by autism.“from the introduction of “Analyzing the Discourse Surrounding Autism in the New York Times Using an Ableism Lens,” by Alshaba Billawalla
“We found that readers that rely on the NYT as a primary source of information get very limited information about what autism is and what factors are associated with autism and they are heavily exposed to a medical narrative. We suggest that the negative, medical narrative adds to the problems people with autism face.”from the abstract of “Analyzing the Discourse Surrounding Autism in the New York Times Using an Ableism Lens,” by Alshaba Billawalla
Substitute pathological for medical, and culture for neurodiversity, and I could have written their thesis at the top of this post.
I like to assume that people are doing their best, especially when it comes to charged topics like disability. I wanted to believe that the editors who put this magazine together (and the other people who are part of its production) just didn’t know much about autism. But dammit New York Times! It is your ACTUAL job to read and be aware of both the explicit and implicit message you’re publishing. There is no way you didn’t know about this scholarly article.
You are capable of painting the positive picture of autism in research, workplace and community while still exposing the underbelly of the effect that the pathological viewpoint has on autistic people. That would be a story worth reading. Instead, you republished a bunch of old articles that repeat stories and language maintaining a status quo that has been proven, by at least one study, to harm the community you are purporting to help people understand. For what? The money? I hope it was worth it.
My neurds, don’t buy this magazine. Read the original articles online and find other ways to support the authors lending their voice to neurodiversity.
Following is list of the articles in the order the appear in the magazine, beneath their respective category. The title in the magazine is followed by the original title linked to the story online, the date of publication, the author’s name and their relationship to autism.
Child and Family
To Some, the Subway is Actually Soothing (For Autistic Boys, the Subway is Actually Soothing) (2018/11/8) by John Leland (Metro Reporter for NYT)
For ‘Train Kids,’ The 2nd Avenue Subway is a Dream Come True (For ‘Train Kids,’ the Second Avenue Subway is a Dream Come True) (2017/01/09) by Kathleen O’Brien (NYT Staff Editor, parent of an autistic)
Mother and Daugher, Both With Autism (My Daughter and I Were Diagnosed with Autism on the Same Day) (2020/04/15) by Jennifer Malia (Autistic, parent of an autistic)
Adult, Autistic and Ignored (Adult, Autistic and Ignored) (2015/09/06) by Eli Gottlieb (Sibling of an autistic)
Reluctant Keepers (Reluctant Keepers of a Brother with Autism) (2018/05/25) by Elizabeth Choi (Parent of an autistic)
Visualizing Life With Autism (Visualizing Life with Autism) (2018/08/22) by Sara Aridi (NYT Staff writer), photos by Erin Lefevre (Sibling of an autistic)
Autism and Science
The Search for a Biomarker for Early Diagnosis (The Search for a Biomarker for Early Autism Diagnosis) (2019/04/22) by Perri Klass M.D. (Pediatrician)
Mapping the Brain’s Genetic Landscape (Mapping the Brain’s Genetic Landscape) (2018/12/13) by Benedict Carey (NYT reporter)
How Twins Look at Faces May Offer Insight into Autism (Study of How We Look at Faces May Offer Insight into Autism) (2017/07/12) by Pam Belluck (NYT Writer)
Baby Teeth Can Link Pregnancy and Autism (In Baby Teeth, Links Between Chemical Exposure in Pregnancy and Autism) (2018/07/02) by Perri Klass, M.D. (Pediatrician)
No, the Measles Vaccine Does Not Cause Autism (One More Time, With Big Data: Measles Vaccine Doesn’t Cause Autism) (2019/03/05) by Jan Hoffman (NYT writer)
Aiding the Autistic
An Office with Room for Understanding (An Office Designed for Workers With Autism) (2019/02/21) by Susan Dominus (NYT Columnist) (May require login)
How Technology is Closing the Job Gap (Using Technology to Close the Autism Job Gap) (2019/10/24) by Ellen Rosen (Freelance reporter)
Schools Replace ‘Hush’ with Help (For Children With Autism, No More Being Hushed) (2017/06/14) by Kate Taylor (NYT Reporter)
Rolling out the Welcome Mat for Uneasy Travelers (Rolling Out the Welcome Mat for Uneasy Travelers With Autism) (2019/07/11) by Elaine Glusac (Freelance writer)
Does Google Glass Have an Afterlife Teaching Children? (Google Glass May Have an Afterlife as a Device to Teach Autistic Children) (2019/07/17) by Cade Metz (NYT journalist)
Muffling the Crowd’s Roar (Muffling the Roar of the Crowd) (2019/11/01) by Jeré Longman (NYT reporter)
How to Meet Autistic People Halfway (How to Meet Autistic People Halfway) (2018/07/13) by Vikram K. Jaswal and Nameera Akhtar (Psychologists)
Autism in Our Culture
For The Actor, The World Really is a Stage (The World Really is a Stage, Scripts and All, to an Actor with Autism) (2017/11/06) by Laura Collins-Hughes (NYT contributor)
What a Muppet Means to My Family (What a Muppet With Autism Means to My Family) (2017/04/07) by Jennifer Malia (Autistic, parent of an autistic)
The Trouble with Autism in Novels (The Trouble With Autism in Novels) (2019/02/04) by Marie Myung-ok-Lee (Parent of an autistic)
A Family Memoir Makes the Case that Autism is Different, Not Less (A Family Memoir Makes the Case that Autism is Different, Not Less) (2017/08/16) by Run Suskind (Parent of an autistic)
Reaching My Son Through Disney (Reaching My Autistic Son Through Disney) (2014/03/09) by Ron Suskind (Parent of an Autistic)