
Grandin on the autism surge
Temple Grandin tells Salon what the new numbers mean to her, and why increased autism awareness isn't always good
By Thomas RogersTopics: Autism, Books, Life News, Entertainment News
In the last few weeks, new autism figures have created widespread controversy among American parents. In early April, the CDC released its latest, shocking report on the disorder, which showed a massive uptick in the number of diagnoses — according to the numbers, one in 88 children and one in 54 boys are now on the autism spectrum. That’s an astonishing 78 percent increase since 2002. In the weeks since, pundits and doctors have spent a lot of time debating what these changes actually mean: Are they due to increased detection, loosened definitions of autism or are we in the middle of a genuine upsurge in autism among American children? As Dr. Thomas Frieden, the director of the CDC, told reporters, this change may “entirely the result of better detection. We don’t know whether or not that is the case.”
For Temple Grandin, the country’s most high-profile autistic person, this news is a source of both relief and concern. Grandin was diagnosed with autism at the age of 2 and didn’t speak until age 4, but went on to become one of the country’s best known authorities in livestock facility design. (In 2010, she was the subject of a well-received HBO biopic, “Temple Grandin.”) Grandin is also the author of several books, including, most recently, “Different … Not Less,” a collection of inspiring personal essays by people on the autistic spectrum who are also gainfully employed. The collection, she tells Salon, was meant to inspire young people with autism to attain successful working lives.
Salon spoke to Grandin over the phone about the newest autism numbers, the problem with autism awareness — and what the government can do to help parents with kids on the spectrum.
The CDC recently released a shocking report that showed a huge uptick in autism numbers. What do you make of it?
I’m very familiar with those figures. One big question that’s come up is: Has autism increased on the mild side of things? I don’t think so — they’ve always been here. Some of this is increased detection. I’ve worked with tons of people that I know who are on the spectrum — but now I think severe autism has really increased. There may be environmental contaminants. I read an article the other day that a supposedly very harmless pesticide on cattle was making bulls infertile, so this brings up the issue of genetics.
There is some concern that by expanding the numbers of people with autism, the CDC is diluting the autism diagnosis.
The problem with these diagnoses is they’re not precise. They’re talking about changing the DSM and replacing it with Social Communication Disorder and they’re sitting around in rooms discussing it. It’s not a precise diagnosis like tuberculosis. You show certain behaviors, like social awkwardness, or fixated interest or repetitive behavior, and that’s labeled autism. But it’s a very big spectrum. On one hand you’ve got people working in technology jobs and on the other hand you’ve got someone who’s nonverbal with epilepsy, and that’s one of the big problems. Steve Jobs would probably be on the spectrum, and so would Einstein.
On the other hand, this newly expanded number may also make a lot of parents of kids with autism feel much less alone.
I think that’s really important. When I was young my mother was totally alone. It would have definitely made a lot of difference. She would have had other parents to talk to in a support group and none of that existed in the ’50s.
Nevertheless, while people have been talking a tremendous amount about autism and Asperger’s in recent years, you suggest that’s not been entirely productive for children with autism.
To a certain extent it’s a good thing. On the other hand, you get to the smart kids who could go have successful careers in Silicon Valley getting held back by labels. One kid goes to Silicon Valley, the other stays home to play video games, and they’re the same geek. I visit people in [autism] meetings, and a 9-year-old will come up and want to talk about his autism. I’d rather talk about his science project. You get fixated on your favorite thing as a kid, and now kids are getting fixated on autism instead of dogs or medieval knights. I’d rather get them to fixate on that something that could give them a career.
Is that the reason why you put together an essay collection like “Different … Not Less”?
The thing that motivated me to to put it together is seeing way too many people with high functioning autism and Asperger’s not getting jobs and making transitions to adult life. Having worked in a technical field my whole adult life, I think, “Where are the aspies?” I think about people I went to college with, the geeky kids, different kids. One of the things hurting people with Asperger’s today is they’re not being taught social skills from old people on the spectrum who managed to be employed their whole life.
So we got about 25 entries [for the book] and I picked half of them. Some of them are people well known in the autism field but I also wanted to have a wide variety of people. They had to be employed their whole life and have an actual diagnosis, but they all had childhood jobs, they all were bullied in school, and I wanted to show that to young people on the spectrum. I didn’t fill it up with happy people in Silicon Valley. There is a person who is a tour guide, a doctor, a psychiatric aide, retail clerk, advertising executive. There’s a real big variety of people, and they talk about how the diagnosis helped them to understand their problems.
There was one person who was a computer lady. Her dad died and she was devastated by that. She got diagnosed because she got depressed. Her boss asked her, “If you’d gotten the diagnosis when you were younger, would you have achieved what you achieved?” The problem with some of the young people on the spectrum is that parents are reluctant to push them out of their comfort zone, and they’re unemployable. I wanted to show in this book that we can succeed.
The same week the new CDC figures were released, another study found that mothers of autistic children are 56 percent more likely to be under the poverty line. Why do you think that is?
Autistic children are very difficult to take care of, especially severely autistic ones. When I was 4 I had almost no language; when I was 3 I had none at all. It’s much more work for the mother of an autistic child to have a job, because working with an autistic child is such a hassle until they go to school. Then it might be easier, but there are still likely to be more interruptions and things, and a mother might be restricted on what she can do in terms of travel.
What do you think needs to be done in order to change that?
My mother’s been working with a group called Families Together. For a family that has severely autistic kids, the divorce rate is through the roof. [Families Together] put on weekends where families meet up and they get the whole family working together so they don’t get so frazzled and fall apart. That’s a huge issue.
Should there be more government support for parents with kids on the autism spectrum?
Parents need to have respite so they can go out to a restaurant and have some time off. That’s a huge problem for parents. And then there’s the cost of therapy, a lot of schools have only two hours of speech therapy per week. If you talk with these kids when they’re very young, 20 to 30 hours a week with a good teacher, that improves the prognosis. But then you also need better services for adults. If you’ve got a non-verbal adult, what happens after he’s 21 or 22 and he ages out of school? That’s a huge problem, especially for severely autistic adults.
Thomas Rogers is Salon's former Arts Editor. He has written for the Globe & Mail, the Village Voice and other publications. He can be reached at @thomasmaxrogers. More Thomas Rogers.
You Might Also Like
More Related Stories
-
Texas councilwoman outraged over billboard featuring gay couple
-
Guys worry about sex on the first date too
-
Miss Utah gives wonderfully succinct answer to question about women and work
-
GOP lawmaker: Extreme abortion ban justified because of masturbating fetuses
-
Samantha Bee faces down the gay lobby
-
What "The Bling Ring" gets wrong about Valley girls
-
Pentagon to begin training women for elite combat roles by 2015
-
From "Bling Ring" to Oprah, "The Secret" lives on
-
I'm still angry about the affair
-
Looking to the mother I barely knew
-
Chicago firefighters charged with attempted rape of an unconscious woman
-
No one understands how hard it is to be Glenn Beck, says Glenn Beck
-
Five major takeaways from Edward Snowden Q&A
-
Bloomberg's Siri joke slights female engineers
-
Women make up 50 percent of NASA's incoming team of astronauts
-
Why didn't anyone help?
-
How our brains separate empathy from disgust
-
Poland's first openly gay MP assaulted during pride event
-
Carl Hart: Drugs don't turn people into criminals
-
Miss Utah bombs while answering question about gender wage gap
-
What looming DOMA ruling means for immigration reform
Featured Slide Shows
Gripping photos: The people of the Turkey protests (slideshow)
close X- Share on Twitter
- Share on Facebook
- Thumbnails
- Fullscreen
- 1 of 11
- Previous
- Next
-
The protests take on a festive element as police forces move out of the park and square. Wearing a gas mask, this young man dances to traditional Turkish music in front of Taksim Square’s Ataturk Monument.
-
In Gezi Park since March 31st, this protester, originally caught off-guard by the Government’s teargas and water cannons, went out and bought a Russian army mask from WWII, preparing for what was to come.
-
This rambunctious boy seems to be enjoying the chaos. After taking this picture he threw a stone at the already destroyed building in the background.
-
Forming a line, the police face off directly with protesters in Taksim Square. After a while, they retreated and there was a general cheer – a back-and-forth dance that has been common since the beginning of this protest.
-
An elderly woman in Gezi Park reads the news. The tent community occupying the park was violently destroyed on June 16th.
-
Many different groups had set up booths to promote their cause in Taksim Square and Gezi Park. Standing in front of one, this man waves his flag while posing with conviction.
-
Many home-remedies are used to minimize the effects of tear gas. This woman has put a milky solution on her face, removing her mask after the tear gas dissipated. Before sunrise, the police came again for another round of teargasing.
-
People capitalize on the uprising -- selling flags, beer, gas masks, sky lanterns and spray paint to name just a few of the popular items.
-
On Monday morning, June 11, the police execute a strong offensive. Many plain-clothed police officers, like the ones seen here, clash with protesters in the side streets away from the main stand-off in Taksim.
-
The authorities seem to be most aggressive in the night, pushing protesters away from the square and park. After being teargassed this young woman catches her breath with other protesters on Siraselviler Street.
-
Recent Slide Shows
-
Gripping photos: The people of the Turkey protests (slideshow)
-
The week in 10 pics
-
Photos: Turmoil and tear gas in Instanbul's Gezi Park - Slideshow
-
10 summer food festivals worth the pit stop
-
- Share on Twitter
- Share on Facebook
- Thumbnails
- Fullscreen
- 1 of 11
- Previous
- Next
-
The week in 10 pics
-
10 summer food festivals worth the pit stop
-
The week in 10 pics
-
The week in 10 pics
-
9 amazing drive-in movie theaters still standing
-
The week in 10 pics
-
The week in 10 pics
-
The week in 10 pics
-
The week in 10 pics
-
The week in 10 pics
-
The week in 10 pics
-
Netflix's April Fools' Day categories
-
The week in 10 pics
-
The week in 10 pics
-
The week in 10 pics
Related Videos
More Related Stories
-
Texas councilwoman outraged over billboard featuring gay couple
-
Guys worry about sex on the first date too
-
Miss Utah gives wonderfully succinct answer to question about women and work
-
GOP lawmaker: Extreme abortion ban justified because of masturbating fetuses
-
Samantha Bee faces down the gay lobby
-
What "The Bling Ring" gets wrong about Valley girls
-
Pentagon to begin training women for elite combat roles by 2015
-
From "Bling Ring" to Oprah, "The Secret" lives on
-
I'm still angry about the affair
-
Looking to the mother I barely knew
-
Chicago firefighters charged with attempted rape of an unconscious woman
-
No one understands how hard it is to be Glenn Beck, says Glenn Beck
-
Five major takeaways from Edward Snowden Q&A
-
Bloomberg's Siri joke slights female engineers
-
Women make up 50 percent of NASA's incoming team of astronauts
-
Why didn't anyone help?
-
How our brains separate empathy from disgust
-
Poland's first openly gay MP assaulted during pride event
-
Carl Hart: Drugs don't turn people into criminals
-
Miss Utah bombs while answering question about gender wage gap
-
What looming DOMA ruling means for immigration reform
Most Read
-
Why Sarah Palin actually matters again Joan Walsh
-
Lynda Obst: Hollywood's completely broken Lynda Obst
-
GOP plan to appeal to millennials: "Make abortion funny" Alex Seitz-Wald
-
To my daughter on Father's Day: Sorry I used to be a sexist Mo Elleithee
-
Why didn't anyone help? Mary Elizabeth Williams
-
The best of Tumblr porn Tracy Clark-Flory
-
Study: Reading novels makes us better thinkers Tom Jacobs, Pacific Standard
-
Rahm Emanuel is losing control of his city Mark Guarino
-
Jon Stewart who?: John Oliver's "Daily Show" is almost too good Willa Paskin
-
The most popular Tumblr porn Tracy Clark-Flory

Popular on Reddit
links from salon.com

2513 points2514 points2515 points | 255 comments

128 points129 points130 points | 4 comments
From Around the Web
Presented by Scribol
-
Diane Gilman: Baby Boomers: A New Life-Construct -- From "Invisible to Invincible!" -
Susan Gregory Thomas: Why Divorced Boomer Moms Don't Deserve The Bad Rap -
British Nanny Offered An Annual Salary Of $200,000 -
Arianna Huffington: What I Did (and Didn't Do) On My Summer Vacation -
Vivian Diller, Ph.D.: Maybe Happiness Begins At 50






You Will Never Be Able To Look At Judi Dench The Same Way Again
Comments
20 Comments