Wednesday, July 22, 2009

Challenging Popular Myths About Autism

This post was written by guest blogger, Rachel Cohen-Rottenberg, who publishes the blogAsperger Journeys: Reports from Life on the Spectrumat

Last spring, my family and I moved from our 22-acre farm in western Massachusetts to the center of Brattleboro. It was the beginning of a new life together.

Six months later, at the age of 50, I was diagnosed with Asperger's Syndrome, a high-functioning form of autism. Far from being a moment of heartbreak, my diagnosis was a cause for celebration. For the first time, my life made sense.

I had always felt very different from other people. I had always had a sense of apartness, of otherness, for which I could find no explanation.

The subject of autism had always fascinated me, but the idea that I might be autistic seemed absurd. I'd gone to college, made friends, and worked full-time. I was married and raising a family. How could I be autistic? After all, autistic people were locked into their own, strange worlds, unable to communicate or function in society.

Or so I thought.

I've come a long way since then. In the process of understanding myself as an autistic woman, I've had to discard all of the myths I've ever heard on the subject. These myths include the following:

* * *

Myth #1: All autistic people are nonverbal and low functioning.

Autism is a spectrum condition. In the U.S., one person in every 150 is autistic, and more than half of all autistic people have Asperger's Syndrome. In addition, many people on the spectrum find themselves between the high-functioning and low-functioning extremes. In fact, some who begin at the more severely affected end of the spectrum can become higher functioning as they grow and learn.

Myth #2: Autism is a mental illness.

Autism is not a psychological disorder. It is a neurological condition in which the brain and nervous system are highly sensitive to sensory stimuli.

When the average person takes in sensory information from the environment, he or she intuitively filters it, prioritizes it, and responds in a purposeful way. For autistic people, sensory processing works very differently. The information comes in full force, without a great deal of filtering.

For example, I have almost no ability to filter auditory information. Anywhere I go, I hear a cacophony of sounds and voices, all at the same high volume. It is difficult for me to have a conversation with a lot of sound in the background, because for me, there is very little background. Any loud, crowded, unstructured situation causes me nearly immediate sensory overload.

I also experience the visual world very intensely. I am constantly scanning my environment, looking at numerous details, and attempting to order them into some sort of pattern. Because the visual world constantly changes, my ordering process never stops. It's only recently that I've realized that most people do not experience the visual world with the same intensity that I do.

Myth #3: Autistic people lack empathy.

Far from lacking empathy, autistic people often have an excess of empathy. However, because of our sensory sensitivities, we may not always be able to show it.

As a child, I was very sensitive and vicariously experienced the suffering of others. For example, in Hebrew school, we watched Nazi footage of what had happened in the concentration camps during the Holocaust. I saw films in which people were lined up at the edge of a ditch and shot. The empathy I felt for the people was immediate. I felt myself experiencing what they were experiencing, as though it were happening to me at that very moment.

For many years since then, I've been aware that when I walk into a room full of people, I enter into the emotional experience of everyone present. It's as though all the emotions come right through me. It all comes in much faster than I can process it, but I feel its impact. I become very disoriented, so much so that I have difficulty feeling or thinking at all.

My husband can usually tell when I'm having this experience. He'll say, "You're gone, aren't you?" to which I can only nod an emphatic "Yes."

Myth #4: Autistic people are antisocial.

Autistic people often have difficulties in communication because we are unable to intuitively read nonverbal cues, such as facial expressions and body language.

I've recently learned that nonverbal cues make up about 90 percent of any conversation. Until my diagnosis, I had no idea that nonverbal language even existed. When conversing, I just hear the words. That's all. And because I just hear the words, I have to spend more time listening, translating, thinking, and responding than a neuro-typical person.

My response times are therefore delayed. People sometimes interpret my delayed response as a lack of interest. Under most circumstances, they are mistaken.

I don't it's possible for me to fully express what a longing I have to spend time with other people. However, a 10-minute conversation with one person can feel like a lot of work. A conversation with more than one person is nearly impossible. And when you add my sensory and emotional sensitivities to the mix, you get a person who requires a great deal of solitude.

Myth #5: Autistic people don't make eye contact because they don't care about what people have to say.

I find eye contact very difficult, but it has nothing to do with whether I'm interested in what someone is telling me. In fact, if I'm interested, I usually have to look away from the person in order to think clearly.

Over the years, in an attempt to mask my difficulties, I have developed a number of cloaking devices, including the ability to make and maintain eye contact. However, the skill does not come naturally.

Except for my husband and my daughter, I shy away from eye contact with most people, rather in the same way that I shy away from looking directly into the sun. When I look into a person's eyes, I have such a profound experience of the person that it's overwhelming.

Myth #6: Autistic people can't have families of their own.

Many autistic people are married and raising children. Both my husband and my daughter are neuro-typical, and I adore them.

Myth #7: Autistic people are puzzles with pieces missing.

The use of the "missing puzzle pieces" metaphor to describe autism is a source of great pain for me.

Before my diagnosis, I used to feel that I had pieces missing. Once I discovered that I had Asperger's Syndrome, all of the pieces of my life started coming together to form a coherent, recognizable picture. For the first time in my life, I felt whole.

Myth #8: Autistic people have low intelligence.

Autistic people have different levels of intelligence, just as neuro-typical people do. The test used for measuring intelligence makes a profound difference in the outcome of the assessment.

In a 2007 study, autistic children and neuro-typical children took two IQ tests: the WISC test (which relies on verbal questions and responses) and the Raven's Progressive Matrices test (which measures the ability to do high-level abstraction and complex reasoning).

Not a single autistic child scored in the high-intelligence range of the WISC; in fact, one-third scored in the low-intelligence range. However, one-third of the autistic children scored in the high-intelligence range on the Raven's. Autistic and neuro-typical adults were tested as well, with the same results.

Myth #9: Autistic people do not enjoy life.

For some autistic people, this statement is true, just as it's true for any other group of people. However, many of us find great joy in our loved ones, and we can focus like a laser beam on our special interests for hours on end. My family, my friends, my art, my music, my writing, and my community work are constant sources of joy and satisfaction.

Myth #10: Autism is a disease in need of a cure.

This statement is the focus of passionate debate.

Like many others, I do not consider autism a disease. As researchers at the Swiss Brain-Mind Institute wrote in a 2007 article, "The autistic person is an individual with remarkable and far above average capabilities due to greatly enhanced perception, attention, and memory. In fact, it is this hyper-functionality which could render the individual debilitated."

At present, there is no cure for autism. I understand why some people on the spectrum might want a cure. Being autistic, even at a high-functioning level, is very difficult. For people on the severe end of the spectrum, the condition can be truly disabling.

Personally, I do not want to be cured. Autism makes me who I am, and it has given me many gifts. I am sensitive, empathetic, and artistic. I see great beauty in the world, and I feel its injustices very deeply. I am very direct in my speech, and for that reason, people intuitively trust me.

I would not want to be different. I am proud of who I am. It has taken me 50 years to discover the truth about my life. In the time remaining to me, I plan to mine that truth for all its worth.

* * *

Photo: Dr. Hans Asperger.

Thank you, Rachel,

Wednesday, July 15, 2009

Kids Can Make a Difference

Christine, a mom of four kids (one with Down syndrome), responded to last week's post - "Summertime, and the Living is Easy" - with some wonderful suggestions for parents (or grandparents, caregivers, etc.) who are looking for more things to do together as a family. She said, "I am always looking for more things TO DO. And, many times, I have a few nieces join my "biological summer camp".

A few things we have done are:

  1. visited the elderly in nursing homes. We bring homemade cards for them, and fresh cookies;
  2. cooking and baking lessons for the kids. Great learning experience in measuring and following the instruction on a recipe. The greatest reward is eating what you made!
  3. write letters to friends and family. For those who don't have e-mail, send those wonderful works of art that are hanging around in your home."

It occurred to me that Christine is teaching her kids how to make a difference in the world. And by making these activities fun, her children will forever associate being generous with having loads of fun. By the time they edge into adulthood, they will be eager to create their own projects, or join with others to create a "more just, sustainable, and socially responsible world."

Matt Certner, 18, was inspired to found the Sports Clinic for Special Needs. Matt was best friends with Mikey. They had known each other for years, but when Mikey was diagnosed with autism, Matt noticed a difference in the way Mikey was treated. "Particularly when he would try to play sports. Either the coaches would be too competitive to let him really participate or the kids would be callous."

"Matt wanted to let kids like Mikey have a chance at an even playing field if they wanted to play sports. Matt started with one clinic in his hometown in New Jersey with volunteers from his high school, but in 2 1/2 years, the nonprofit group has expanded to six in the state, helping approximately 100 special needs kids and their families. The kids play soccer in the fall, basketball in the winter and baseball in the spring. Like any other sports clinic, the kids get uniforms and trophies. Matt is going to Duke in the Fall, but plans to continue his work.

"I don't do it for resume status. Ever since I was young I wanted to give back. I love it. I love the kids." "

But if making a difference on such a grand scale doesn't appeal to your child, there are plenty of ways he or she can lend a hand to help those in need. In fact, it's often "small changes that make a big difference". At Kids Can Make a Difference, they have a handy What Kids Can Do page that's chockfull of ideas about how to get involved.

Their fundraising ideas include:

  1. Bake Sale
  2. Neighbourhood Flea Market
  3. Costume Ball
  4. Read, Dance or Walk-a-Thon
  5. Talent Show
  6. Art Show
  7. Poetry Reading
  8. Community Auction
  9. Car Wash
  10. Birthday Donations

As Emma Smith, 20, said about her experience volunteering for Oxfam: “Due to volunteering I have met some amazing, like-minded teenagers from all walks of life who live hundreds of miles away from each other… In fact, volunteering has encouraged me to question my life in the UK and see the world from entirely different perspectives… I encourage anyone considering volunteering to do so. Regardless of the amount of time you spare, your help will definitely be valued and it really does change your life.”

What about you? Share your experiences and your ideas with us, please.

photo credit: by terryooze


Friday, July 3, 2009

Summertime, and the Living is Easy

When you hear the word summertime, what comes to mind? For some people, "summertime conjures up images of full-blooming nature, fluttering butterflies, and nighttime crickets. It also reflects sweltering sheets, stagnant heat, and restless nights where flipping over a cool pillow is the only way to survive."

Others would rather bask in the memories of getting up at the crack of dawn to fish in their favourite "secret" spots, or revisit the city campground/park, where they would canoe, kayak, or go tubing.

For me, "summertime" and "fun" go together like burgers and barbeques. My memories of summertime during my childhood are drenched in sunshine. It obviously must have rained, from time to time, every year, but when I close my eyes and think of summer, I can only remember spending most of every day in my bathing suit, running through sprinklers, trading homemade Kool-aid popsicles with friends, and playing hide-and-seek by the hour. During the seemingly endless days of summer, we swam, rode our bikes, and picnicked on the beach with friends and family.

As a parent, however, some of my memories of summertime are a little less idyllic. I remember scrambling for activities to fill the endless rainy days at a cottage. Not being particularly "crafty", I would dig out old Christmas cards and magazines (to cut up), jigsaw puzzles, and the ever-reliable standby, movies from the local library.

So when I came across Terri Mauro's ( Special Needs Children) article on Fun Things to Do Today, I dearly wished this list had been available about 10 years ago.

One of the fun activities on her list that looked "cool", if you'll pardon the pun, was ice cube paintings. This is a craft for young and old alike, and you'd need very little in the way of supplies. A box, a piece of paper, Jell-O or Kool-Aid (she also suggests powdered tempera paint) and an ice cube. Put them together, and voila, an instant fun activity for a rainy day.

One enterprising mom uses water to entertain her child, but knowing that her autistic child loves nothing better than turning on faucets throughout the house, she capped the faucets she didn't want turned on. In order to keep the water bill manageable, she bought a small plastic pool.

"Once it is filled, I put plastic milk jugs in it with the ends cut off or holes poked in it so that when filled with water, they make different types of water formations. AND, invest in a small fountain, a little second-hand one that you could quite happily put into a fishtank, is enough to circulate the water and make them believe that they are getting running water.

What you are actually doing is recycling the water that is already in your small pool."

The National Autistic Society said, "As with all children, children with autism have a wide range of likes and dislikes. Shields (1999) has compiled a list of toys that have been demonstrated as being popular with young children with autism. They include toys which are visually interesting (e.g. bubbles, shape and colour matching or sorting toys, jigsaws, Jack-in-the-box, lego, videos: especially Thomas the Tank Engine, Pingu and Disney); books, especially those with flaps or items to touch, puzzle books, word books, etc.; physical activity toys: e.g. swing, slide, trampoline, rocking horse, ride-on toys, climbing frame, football, etc.; games to play with other people: e.g., tapes of singing and dancing games, picture lotto, snap, Connect 4, Snakes and Ladders, Ludo, chess; and computer software to develop vocabulary; factual software."

What about you? What do you do with your kids, or what did you do with your parents, on rainy days?

Photo credit: Neil MacDonald

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