About the SA Blog Network

Culturing Science

Culturing Science

Biology as relevant to us earthly beings
Culturing Science Home

Learning to understand non-genius autistic people

The views expressed are those of the author and are not necessarily those of Scientific American.

Email   PrintPrint

Picture of an autistic teenage girl. (I felt weird putting a picture of my lil bro on the internet without his knowledge.)

When I unwrapped my New York Times on Sunday, I was met with a surprise: A front-page, above-the-fold story about a young adult with autism. The story — a must-read, which you can do here — follows Justin Canha, a 20-year old with autism as he stretches towards adulthood and aspires to an independent life. The feature, written by Amy Harmon, who won a National Academies communication award last week for her “Target: Cancer” series, is beautifully wrought and a joy to read. It’s already been praised as a brilliant and insightful piece of medical journalism on blogs and twitter.

But I want to praise it for something else. Many articles about autism focus on the highest-functioning people on the spectrum, who certainly struggle socially, but who are brilliant beyond average academically or in some other quirky way. (Often they have Asperger’s syndrome, which will no longer be a diagnosis with the publication of the fifth edition of the psychiatric handbook, the DSM-5, in May 2013, merging into the broader autistic spectrum.) Instead, Harmon celebrates Justin, a young man with a knack for cartooning, but whose autism is more familiar to me than in any profile I’ve read thus far.

And I am quite familiar with autism, as my youngest brother, Jonah, is on the autistic spectrum. There was a point in my life when I had to explain what autism was nearly every time I spoke about him. But I rarely have to do that anymore. As soon as I mention his diagnosis, acquaintances sigh with recognition, as if they know what that means. And, no doubt, they know more than they once did: autism awareness has never been higher, with one in 110 children born now diagnosed. But I wish I were still given the chance to explain. Too frequently, they follow-up with statements about his intellectual gifts — “Oh, he must be really smart then.” — a sign of the influence of the stories about those with high-functioning autism.

I usually laugh, and respond, “ah, yes, he is smart.” But I don’t mean ‘smart’ in any way that society currently values. At nearly 16-years old, Jonah can’t count change or multiply. He has favorite books, but he flips through them too frantically to actually absorb the text. I swell with triumph whenever we have a conversation that lasts longer than 30 seconds, an actual exchange rather than repetitions of his favorite topics, which include pasta shapes, wheeled vehicles, and what we’re having for dinner that night. What I see as his ‘smartness’ is his view of the world, little influenced by the social and societal pressures that feed my own insecurities.

In her article, Harmon gets at that smartness in her descriptions of Justin. It’s very difficult to articulate but, given the expanse of a feature, she was able to do it through dialogue and his interactions with others. And my eyes teared up as I recognized Jonah, the kind of autism that I know and love so dearly, in an autistic character portrayed elsewhere.

I’m not trying to denigrate those profiles of high-functioning autistic people. Those people and those stories are important in their own right, for one. But additionally, from a journalism and awareness standpoint, it’s also so much easier for NTs — neurotypicals, as autistic people call us — to understand those who are high-functioning. After all, who hasn’t felt that they themselves had a useful skill that went unrecognized? Who hasn’t felt socially insecure, held back by their own (in)abilities?

Many stories are also told about the parents of autistic children. As Wired writer Tim Carmody explains on his blog, Snarkmarket:

Most readers of newspapers and consumers of serious media are typical, healthy, middle-class adults. They sympathize best with fates that are either totally fantastic or resemble their own. Most people find it easier to imagine being the parent of an autistic child. They find it harder to imagine being autistic and struggling with the problems of autistic adults themselves.

In her piece, Harmon invites NTs to sympathize and understand an autistic adult in his own right. Autistic adults are in our society, and as the children now diagnosed with autism grow up, there will be even more. It is thus critical that assimilated folk learn to understand them and no longer ignore them, push them aside, or worse. Journalism can do that. Journalism can help people understand other people. And, as I toddle around in my baby-journalist shoes, that is truly inspiring.

So, thank you, Amy Harmon, for taking this step of bringing those non-genius autistic people, generally ignored after puberty, into public attention. Thank you for highlighting Justin’s trials and spilling light onto people undergoing similar ones.

But it means more than that for me. When I talk about Jonah, everyone asks, “What is he going to do when he grows up?” And, honestly, I don’t know. He still has five more years of school — he started public high school this year! — and I will not let anyone decide for him what he is capable of, and certainly not when he’s still a teenager. But I dream of a world where people see him on the street and don’t edge away, where society is more accepting of those whose brains are, well, atypical. I don’t know if society will ever find a productive role for lower functioning autistic people. But a society whose citizens put in the bit of effort required to understand the individual autistic people they encounter? That is something we can work toward.

Image: an autistic teenage girl, via Wikimedia Commons

Hannah Waters About the Author: Hannah Waters writes about natural history and the way people think about nature. She lives and works in Philadelphia, PA, but really on the internet. Follow on Twitter @hannahjwaters.

The views expressed are those of the author and are not necessarily those of Scientific American.

Rights & Permissions

Comments 5 Comments

Add Comment
  1. 1. giovannipresta 12:31 pm 09/21/2011

    I agree, unfortunately many people think that to an autistic life is like in the movie Beautiful Mind, unfortunately is not ‘so’

    Link to this
  2. 2. ozrkmtndd 1:58 pm 09/21/2011

    I do understand your concerns. A colleague of mine has a son that is more lower functioning than many autistic children, and as they are older parents, he and his wife did have to prepare for the day that they could no longer manage his life for him. They have made arrangements for him to be in a group home. My daughter is diagnosed with Aspergers and I am often a bit shy about it. I am not embarrassed. It is just that people don’t really make the connection most of the time to autism. Most of the time people think she is just spoiled, unless they work with her a lot, or they have prior experience.

    To be honest, thirty years ago she would have been seen as quirky. Most of her problems revolve around her social behavior. She is often overly affectionate, she cannot remain still, and has no impulse control. She is also very immature for her age, and a bit naive. It takes a very patient soul to be her teacher.

    I am an older parent. I worry about her when I am no longer here to direct, and guide her impulsive behaviors. Maybe I am overly concerned, but I plan on a) never retiring, at least not until I am forced; b) leaving her a home paid for, and my retirement so that she can care for herself with minimal income, though she is brilliant, I am not certain that she will be able to find a niche in our society.

    I have friends who have interdicted their son to protect him. He can go to court and change his status. He is a good kid, I taught him in college. Still, he is very quirky.

    My therapist thinks that I would probably have been diagnosed if people had known what Aspergers was some fifty years ago. I managed, so I do have hope, but a lot of fear for my daughter as well.

    Link to this
  3. 3. AWeb69 6:30 pm 09/21/2011

    There are a lot of high functioning autistics that have no special savant talent or genius abilities and have a lot of problems struggling through the world. It is not just a social anxiety issue. It is a cognitive and sensory processing difference in the brain that makes taking in information much different than it seems others do. Understanding what others are trying to get across and getting them to understand also are both very complicated. People often assume the worst when they can’t understand and they are hurrying, so they refuse to listen even more. People with autism need others to slow down and try to understand, no matter where they are on the spectrum or if they are genius or not.

    Link to this
  4. 4. Amalia Starr 8:17 pm 09/21/2011

    I too think Amy Harmon did a terrific job writing this story. I could certainly relate to it. My son Brandon is thirty-eight and he has autism. We were told by the professionals who worked with my son that he would never be able to live alone. They were wrong. Brandon has been living on his own for the past fourteen years. I am an author and an autism motivational speaker and I am driven to speak, because my son has so many limitations including intractable epilepsy and severe learning disorders, but it does not stop him from living his dream of independence. When I talk about my adult son Brandon it helps to bring hope into the autism arena. I also have a non-profit it is Autism Independence Program. Our first project is called, Secret World. It is a documentary on how Brandon has been able to make independence work for him. He never allows his numerous limitations to stop him from living his dream of independence while paving the way for others by demonstrating anything is possible. Without hope we have nothing to hold onto.

    Link to this
  5. 5. Carpediem33 10:46 pm 06/6/2013

    I agree with AWeb69, many people understand the physical characteristics of autism such as impairments in speaking, social interactions and controlling emotions. However, a few know what goes on in the autistic brain. A few know the difference between a healthy brain and an autistic brain. Most of these physical characteristics stem from the impairments of the frontal cortex, the cognitive center of the brain.
    I think Walters is correct in saying that journalism can help people understand the difference. I also believe that education in this topic can bring awareness and help people understand the differences and similarities between a heathy and an autistic brain. Articles like Harmon’s where she walks readers through the day to day struggles of Justin, and his journey to success, articles written to the general public about the science behind autistic brains, and teachers who incorporate a lesson on mental disorders within a science class can all help people relate to these people with this disorder. Walters states in her post that 1 in 110 babies that are born are diagnosed with autism and Amy Harmon in her article writes that 200,000 autistic teenagers are to “come of age in the US within 5 years.” This means that autism is a common disorder among us, we cannot treat these people like they have an infectious disease and ignore and stay away from them, we need to be accepting and understanding. This is easier said than done. The problem in our society today is that we are too fast for own good, everything has to be fast; fast food, fast internet, driving fast, quick to judge…etc. We have problems with patience and that is what these people diagnosed with autism need, they need patience.
    I believe that independence can be achieved among all autistic individuals, but only with the patience and help of loved ones and people around them. In Justin’s story, he was helped by his family and Ms. Stanton-Paule program to achieve his goal of becoming independent. I think the moral of the story is that we all learn in different ways, and we all need help achieving our goals.

    Link to this

Add a Comment
You must sign in or register as a member to submit a comment.

More from Scientific American

Email this Article