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The Story of Temple Grandin and Oliver Sacks

My neurds, I have a special treat for you today. My friend Hanna, a wicked-inspiring #actuallyautistic woman, has come to us from The Bullsh*t Positivity Project to write a super heartwarming post for you.

Image drawn from a photo in Thinking in Pictures by Temple Grandin.

Thank you Lisa, for this opportunity to write for your blog! Lisa is a good friend of mine and we both attend the same group for women on the autism spectrum.

A couple years ago, I started to suspect that I was on the autism spectrum. This realization triggered a landslide of emotions, some good, others difficult. My journey since then has been to learn as much as I can about autism and to, for the first time in my life, figure out who I really am. While exploring autism, I learnt plenty, but the story of Temple Grandin and Oliver Sacks captured my heart. It’s truly fascinating and I’m going to share it with you today.

Two Remarkable People and a Story Like No Other

When two remarkable people cross paths, you get a story like no other. Our story begins in 1993 when Oliver Sacks, a prominent neurologist, sets out for Fort Collins, Colorado to write a profile on Temple Grandin, who he describes as “one of the most remarkable autistic people of all.” This post is focused on Oliver and Temple’s fascinating relationship, viewed largely through the lens of Sacks’ profile; it is a relationship that knows deep humility, and an equally deep sense of love (platonic but still heartwarming 🙃).

Meet Temple Grandin: Renowned Animal Scientist and Autism Advocate

Temple Grandin is one of the most prominent figures in the autistic community. In 1986, she published her first book, Emergence: Labeled Autistic, which took the medical community by storm and changed the public’s understanding of autism forever. At the time, such a book was “unthinkable because it had been a medical dogma for forty years or more that there was no ‘inside,’ no inner life, in the autistic, or that if there was it would be forever denied access or expression.” (Grandin & Sacks, 2006, p xiii).  Yet here was Temple, intensely articulate, with pages and pages of insight into her experience as an autistic person; numerous books following her first.

Temple’s work, however, does not lie solely in the world of autism. Temple Grandin is also renowned in the livestock industry. She’s “a gifted animal scientist who has designed one-third of all the livestock handling facilities in the United States”. To say that Temple is passionate about cattle is an understatement, Oliver Sacks writes “I was struck by her rapport with, her great understanding of, cattle—the happy, loving look she wore when she was with them.” There’s Temple Grandin for you, but now who is Oliver Sacks? (Grandin & Sacks, 2006)

Meet Oliver Sacks: Quirky Neurologist and Eminent Storyteller

Meet Oliver Sacks, a British-born neurologist who was celebrated for his writing, which he described as clinical tales or “neurological novels”. (Cowles, 2015) With an artistic and even spiritual flair, Oliver told the stories of his patients through a humanistic lens. To give you a sense of his work, Oliver has written about a painter who loses his color vision and undergoes a deep existential crisis (An Anthropologist On Mars), autistic savants (An Anthropologist On Mars), migraineurs and their complex relationship to their condition (Migraine), and a man whose brain was unable to make sense of what it was seeing (The Man Who Mistook His Wife for a Hat), to name but a few. “Ask not what disease the person has, but rather what person the disease has,” is the epigraph for Oliver’s well-known book, An Anthropologist On Mars.

Oliver was quirky too, drawn to motorcycles and the weight lifting culture of muscle beach, an possessed a great love for swimming, music, and the periodic elements. (Cowles, 2015) But now we arrive at the heart of this post which is Oliver’s well-known profile on Temple Grandin. It’s 1993, and Oliver departs for Fort Collins Colorado, where two paths will merge, and the real story begins.

Oliver Is Humble and Makes Space for Temple’s World

While reading Oliver’s profile of Temple, I was struck by his humility towards Temple, specifically his ability to make space for Temple’s world. What I mean by this, is that Oliver allows Temple to define, articulate, and ascribe meaning to her experience as an autistic person. Despite the fact that Oliver is a neurologist and the so-called ‘expert’ of the two, he isn’t the least bit dogmatic and instead allows Temple to craft her own narrative. Much of the profile is devoted to relaying what is important to Temple, that is, topics about which she speaks to him at length and with great passion. Oliver takes the back seat and lets Temple explain her squeeze machine (an invention of hers designed to fulfill her need for deep pressure), her powerful style of visual thinking, her passions (animals and science), her struggles (understanding complex emotions and deciphering social behavior), and her feelings.

Oliver, of course, draws his own conclusions about Temple, but he still demonstrates humility. He frequently uses variations of the phrase “it seems to me” whenever he speculates or theorizes about Temple’s behaviors, abilities, and feelings. For example, at the end of three long paragraphs dedicated solely to relaying Temple’s narrative on various aspects of her experience as an autistic woman, Oliver writes: “There seemed to me pain, renunciation, resolution, and acceptance all mixed together in her voice.” (Sacks, 1993) Throughout the profile, Oliver is not the expert—Temple is. Oliver merely listens and transcribes.

Oliver Sacks Allows Temple to Challenge His Presumptions About Autism

Throughout the profile, Oliver demonstrates humility towards Temple in yet a second significant way. Very frequently, Temple behavior directly challenges Oliver’s presumptions about autism. But instead of anomalizing these moments in an effort to preserve the knowledge of his field, he admits how Temple defies his expectations. There are few stand-out examples of this in the profile. The first one is early on, Temple and Oliver have just met and are driving together when Temple points out a Taco Bell and humorously remarks how it doesn’t look the least bit “bellish.” Oliver writes:

“I was struck by the charming, whimsical adjective “bellish”—autistic people are often called humorless, unimaginative, and “bellish” was surely an original concoction, a spontaneous and delightful image.”

from “Temple Grandin’s Extraordinary Gifts”, by Oliver Sacks in The New Yorker.

Oliver could well have downplayed her humorous remark and explained it away in order to protect the accepted position (of the time) that autistics lacked a sense of humor. But on the contrary, Oliver seems quite delighted to have his mind changed.

Yet another time, excited to show Oliver around a meat-packing plant she helped to design, Temple schemes to smuggle Oliver in, disguised as a sanitary engineer. This is Oliver’s account of their interaction, and how his expectations on autism were challenged, yet again:

“Temple had (…) selected from her hat collection a sanitary-engineer’s bright-yellow hard hat. She handed it to me, saying, “That’ll do. You look good in it. It goes with your khaki pants and shirt. You look exactly like a sanitary engineer.” (I blushed; no one had ever told me this before.) “Now all you have to do is behave like one, think like one.” I was astounded at this, for autistic people, it is said, have no pretend-play, and here Temple had, very coolly, and without the slightest hesitation, determined on a subterfuge and was all set to smuggle me into the plant.”

from “Temple Grandin’s Extraordinary Gifts”, by Oliver Sacks in The New Yorker.

In both of these examples, we see that Oliver is very receptive to having his presumptions about autism challenged. He is bold, for in being prepared to be wrong, he is also prepared for neurology and psychiatry to be wrong. Despite having been trained to adhere to the rigidity and completeness of a diagnostic label, he is humble enough to look beyond it, and to allow Temple to carve out for herself what it means to be autistic.

Oliver Sacks Holds Love In His Heart for Temple Grandin

While reading this profile, Oliver’s profound humility blew me away, but I found Oliver and Temple’s relationship fascinating for a second reason; it entailed a deep mutual love. Not romantic love, per se, but love nonetheless. On Oliver’s part, it is quite clear that he finds Temple endearing. In one smile-worthy anecdote, Temple takes Oliver for a mountain drive, and Oliver, tempted to enjoy a quick swim, asks Temple to pull over so he can rush off on foot to a little lake he has spotted. Oliver’s tale continues:

It was only when Temple yelled “Stop!” and pointed that I paused in my headlong descent and looked up, and saw that my flat sheet of water, my “lake,” so still just in front of me, was accelerating at a terrifying rate a few yards to the left, prior to rushing over a hydroelectric dam a quarter of a mile away. There would have been a fair chance of my being swept along, out of control, right over the dam. There was a look of relief on Temple’s face when I stopped and climbed back. Later, she phoned a friend, Rosalie, and said she had saved my life.

from “Temple Grandin’s Extraordinary Gifts”, by Oliver Sacks in The New Yorker.

Doesn’t that last line make you smile? Temple was clearly pleased with this moment of quick observation, and rightfully so, she saved Oliver’s life. And Oliver seems to me, at least, to take happiness and joy in Temple’s bubbling pride—her urge to phone Rosalie and immediately recount her heroics.

To me, endearment is a form of love, and so this anecdote is proof that Oliver held love in his heart for Temple Grandin. But his love for Temple shines even brighter. At the climax of the profile, Oliver recounts that while on their way to the airport, Temple begins speaking to him with a sense of urgency. As always, he captures the words that matter most to Temple:

“This is what I get very upset at. . . .” Temple, who was driving, suddenly faltered and wept. “I’ve read that libraries are where immortality lies. . . . I don’t want my thoughts to die with me. . . . I want to have done something. . . . I’m not interested in power, or piles of money. I want to leave something behind. I want to make a positive contribution—know that my life has meaning. Right now, I’m talking about things at the very core of my existence.”

I was stunned. As I stepped out of the car to say goodbye, I said, “I’m going to hug you. I hope you don’t mind.” I hugged her—and (I think) she hugged me back.”

from “Temple Grandin’s Extraordinary Gifts”, by Oliver Sacks in The New Yorker.

If this isn’t love, then I’m not sure what is. Overcome with emotion, Oliver tries to hug Temple, and again, is respectfully hesitant to define her motives, and feelings, stressing that to his best knowledge, he thinks she hugged him back.

In between the physical affection and strong emotions, I see humility, kindness, and love all wrapped up together in this sentimental goodbye. But there is still more to be said on the matter of love. In response to Temple’s parting words, Oliver is moved, he is not curious. That is, he does not dissect what Temple says, he trusts her—this is how the profile ends, there is no more said on Oliver’s part. It seems that to Oliver, as always, Temple is exactly who she says she is—regardless of labels and preconceived ideas. To strive to see the full humanity in another, despite all the chaos and bureaucracy, despite all the labels and judgments of one’s time, I think, is a powerful and meaningful act of love. And so I say again, in my mind, Oliver Sacks held love in his heart for Temple Grandin.

Temple Grandin Holds Love In Her Heart for Oliver Sacks

There is symmetry in life, and so symmetry in love; Temple held love in her heart for Oliver . To see this, we diverge from the profile and take a step forward through time. After Oliver’s death from cancer, decades after Temple and him collaborated to create her well-known profile, Temple gives a short interview, a tribute to Oliver, for Wired Magazine. In the interview, she says that she had visited Oliver in New York a few times over the years. She continues, with unabashed honesty, saying that Oliver got some of the facts about her house and the squeeze machine wrong for the profile—she had to correct this with the fact-checker (this made me smile). And then she adds, “but when it came to describing my mind, that’s where he got me right.”

This affection and appreciation is both endearing and telling. Temple is a genuine person, she means what she says. But even more endearing, is the fact that she recounts the ‘saving Oliver’s life’ story:

“Then we went up to Estes Park, and he wanted to go and jump in the river. I said, “No, Oliver, you cannot go. There’s a dam there. You might die if you go over that dam. I absolutely cannot let you go in the river.” I stopped him from doing that.”

From “Temple Grandin on How Oliver Sacks Changed Her Life”, by Sarah Zhang in Wired Magazine.

This quote is perhaps an additional sneaky little comment on Oliver’s incredible insight into Temple. Oliver was right—20 years later and she’s still proud of this moment.

But back to Temple’s love for Oliver, where the real heavy hitter comes at the end of the interview. Temple mentions that when she read Oliver’s final essay Sabbath (a reflection on his life and ever-nearing death) she was crying so hard she could barely print it out. Just before he died, after reading Sabbath, Temple Grandin sent Oliver Sacks the following card:

“I started crying at the end of the article when you said, “What if A and B and C had been different?” If that had happened our paths probably would have never crossed. You have made a big difference in my life. Your life has been worthwhile, and you helped many people doing things to enlighten and help others to understand the meaning of life.”

From “Temple Grandin on How Oliver Sacks Changed Her Life”, by Sarah Zhang in Wired Magazine.

Temple Grandin loved Oliver Sacks. And with this symmetry of love, our story ends.

Final Thoughts: A Profoundly Humble Neurologist, an Endearing Animals Scientist, and the Love Between Them

My dear reader, I hope you were as fascinated by Oliver Sacks and Temple Grandin’s friendship as I was. I hope you were awed by Oliver’s profound humility, his efforts to make space for Temple’s world, and his receptiveness to having his presumptions on autism challenged. I hope that you were equally charmed by love—the love that existed between Temple Grandin and Oliver Sacks; the love that came into being when two remarkable people crossed paths.

For more great content, follow my blog, The Bullsh*t Positivity Project on Instagram, Twitter, Facebook, Medium, or check out my home base here!

BIBLIOGRAPHY

Cowles, G. (2015, August 30). Oliver Sacks, Neurologist Who Wrote About the Brain’s  
     Quirks, Dies at 82. The New York Times. 
     https://www.nytimes.com/2015/08/31/science/oliver-sacks-dies-at-82-neurologist-
     and-author-explored-the-brains-quirks.html


Grandin, T., & Sacks, O. (2006). Thinking in Pictures, Expanded Edition: My Life with 
     Autism (Expanded ed.). Vintage.


Sacks, O. (2019, September 18). Temple Grandin’s Extraordinary Gifts. The New Yorker. 
     https://www.newyorker.com/magazine/1993/12/27/anthropologist-mars


Zhang, S. (2018, March 8). Temple Grandin on How Oliver Sacks Changed Her Life. WIRED 
     Magazine. https://www.wired.com/2015/09/temple-grandin-oliver-sacks-changed-
     life/

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Review: New York Times — Understanding Autism Magazine

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.

Labeling Autism

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?

Plot Twist

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

Their conclusion?

“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.

Understanding Autism

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.

Articles List

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)

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Autis-bit: Meet My Old Friend “Weak Central Coherence Theory”

On July 1, 2020, Steve Silberman posted a photo of The New York Times: Understanding Autism magazine and my brain blew up a little. I imagined a nine-part review of the most impactful articles and doing that cool thing on Instagram where you slice the image into nine posts so that it fits together on your wall. Not to mention that it would be the ideal first review: a little bit of current events, and not a huge long book. It was decided. I ordered it.

When the package arrived, I cleared my desk and peeled back the cover page to reveal an image of a boy wearing Google glasses. I remembered it from an article that made the rounds in the autistic realm last summer. So, I flipped through and read the first bit, then pulled up the story online. Sure enough, different title, but word for word the same article.

“No way.” I flipped to the next article. And the next. And the next. Every one of the articles in the magazine was previously published online. And not one of them from 2020! In fact, the only unpublished writing is Silberman’s introduction and a gallery of images. So, for $17, I have 24 old NYT articles printed on thick paper.

Weak Central Coherence Theory

Sitting there with the magazine in my hands, I was suddenly back in elementary school staring down at a test I’d just got back, the instructions–bold and underlined–circled in red that I had clearly… ignored? “Lisa needs to slow down to avoid making careless mistakes.” the teacher wrote to my parents. What ensued was a years long game of trial and error: no matter how carefully I read instructions, I’d make a mistake.

I typed “missing important details autism” into Google.

The search brought up article after article talking about one thing: Weak Central Coherence theory. To give a bit of context, people who study us usually talk about three main cognitive skills in reference to autism diagnosis: executive functioning, theory of mind and central coherence. My adventure down the NYT rabbit hole fits under central coherence skills, which is the ability to take all the important details of a situation (this could be a conversation, a written document, etc.), put them together and see the big picture.

This is the idea that “the whole is greater than the sum of its parts.” In other words, rather than just looking at the meaning of each detail alone, you put all the details together and derive a meaning from what they create as a whole. Weak central coherence means that you focus on the details at the expense of the big picture. This cognitive style is often referred to as local bias, global impairment, or the inability to “see the forest for the trees.” Less biased researchers call it detail oriented or detail driven.

The research community is divided on whether there is sufficient evidence to support the theory as a diagnostic tool. Two researchers in support of the theory, Rhonda Booth and Francesca Happé, describe weak central coherence as “the root of characteristic ASD symptoms such as insistence on sameness, attention to parts of objects, and uneven cognitive profile, including savant skills.” Interestingly, even though we don’t seem to go for the higher meaning of a situation naturally, many of us are able to learn to do so.

My Old Friend

Looking back, my relationship with details has always been a bit complicated. For instance, I can spell all 195 countries’ names and point to them on a map. I can remember precisely where on a page I read about a certain idea. Yet, for many years, I struggled with basic things like instructions.

Until I threw a hail Mary in grade 12. I had just bombed my English Provincial exam and really didn’t want to take the whole class over. I noticed there was an English Literature option, and I figured if I could take that and do well, I could retake the English Provincial at the same time and save my GPA. Lucky for me, that semester, Mrs. Nielsen not only taught me the secrets to an A+ English paper, but helped me (through hours of after school study groups) develop an intuitive sense for which details to remember, and which to forget when it comes to painting the big picture.

The Big Picture

There’s a lot more to weak central coherence theory than misjudging magazine purchases and writing papers. Here are some things I’ve found easier and harder because of being detail driven1:

Easier

  • Picking out details that others don’t notice
  • Specializing in detailed knowledge of a particular topic
  • Communicating directly and honestly
  • Relaying detailed or nuanced information
  • Noticing changes or irregularities in patterns (debugging code, editing, continuity, etc.)
  • Recognizing shapes/colours (jigsaw puzzles, photo/film editing, etc.)
  • Copying or reproducing drawings, styles, personas, etc.
  • Taking tests that focus on the facts

Harder

  • Discerning between details that are important and unimportant to the bigger picture.
  • “Reading between the lines” (seeing the underlying meaning)
  • Summarizing information or relaying the gist of a situation
  • Understanding or delivering the punchlines of jokes
  • Applying context to words and phrases with double meanings
  • Pronouncing homographs (“she didn’t shed a tear” versus “she heard the fabric tear”)
  • Applying prior knowledge to new situations
  • Creating things from the imagination (as opposed to copying them)
  • Taking tests that focus on global concepts

Now, for my NT readers, there is a difference between learning how to do these hard things and being ‘cured’. I don’t sit around in my natural habitat discerning between important and unimportant details for fun. Like the list says, it is harder and I have to focus on it. I definitely spend my off time enjoying getting lost in the more interesting, but insignificant particulars. Which brings me back to the NYT magazine: why are they all old articles, and how come I didn’t realize that before I bought it?

With most of the post written, I allowed myself a little time off-leash to sleuth around. I discovered that nowhere, not in the magazine nor the order details, did it say “This is a collection of previously published works. And after some more googling, I concluded that it isn’t even a genuine NYT magazine (those say “The New York Time Magazine” at the top). In fact, it is only sold on Amazon, where it is manufactured as a “single issue magazine” and printed on demand. I felt vindicated, but still a little annoyed by the deception.

While I try and let that go, I’m curious how central coherence works or doesn’t work for you? Feel free to add to the lists, or maybe share your story of being detail driven. If you need a bit more inspiration, check out fellow blogger Gwendolyn Kanse’s post about her experience.

Oh! And tune in to my next post to find out how things turn out for the Understanding Autism magazine…

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Alexandra Vivanco.

February 28, 1981 – April 19, 2020

Alexandra Vivanco was a mother, a wife, a friend, an ECE teacher and an advocate for Autism. In high school, Alex and I were part of the same group, but never really got to know each other, in fact, we had trouble finding common ground at times. Funny enough, we would find out years later that we both had a very similar social experience. Last year, at the same time as I discovered autism as a possibility for myself, she began posting about her own journey post diagnosis on Facebook. Finally, I got up the courage to message her, and she revealed to me so much about myself in her own words.

She told me that she always knew she was different, that she never really felt like she fit in anywhere—like she was in the outer circle, rather than the inner circle. She wasn’t bothered by that, particularly; she felt like she was wise beyond her years, and preferred her time alone.

Click to enlarge
Digital portrait of Alex by me (from a FB selfie).

Alex was diagnosed with Autism Spectrum Disorder in June of 2018. After her diagnosis, she learned about masking and realized that her outer appearance didn’t match her inner appearance. Like many of us, she experienced disbelief from those around her. Even her family doctor, post diagnosis, questioned its validity because of her ability to mask. She jokingly told me “If only she saw the inside of my house!” So, after at first hiding her diagnosis, she began a deep soul search and re-evaluated her life. Though her process, she gained the courage to open up more publicly.

“…so many of us as children suffered from being undiagnosed. There was no awareness back then, but Autism did exist. [I wanted to be open about my diagnosis] to be there for those who need support, like yourself, as you are coming to realize you may have autism.”

Obviously, she had a wide variety of amazing traits: she was full of empathy, curiosity and self awareness. I remember her telling me that on one hand, she could manage two preschools but on the other, hidden challenges with executive functioning made cleaning the house and staying organized overwhelming.

True to both of our struggles with managing time, commitments and probably a slight aversion to socializing, we tried a few times to get together, without success. Knowing I wasn’t alone was a huge comfort to me, and I hope to her too.

Alex died on April 19, 2020 at 39 years old from a brain aneurysm. I will remember her for so many reasons, but her courage to live her truth hasn’t left me since she left this earth.

I hope I can find a satisfactory way of honouring your memory some day, Alex. But for now, this will do.

For those of you wanting to give, you can support her family through this GoFundMe.

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The first post.

Hello my Neurds. Welcome to the inside of my brain, 5th floor: Autism.
It doesn’t look like much right now, but we’ll get there.

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