Thoughts and illustrations on living with Asperger's Syndrome.

Sunday, October 30, 2011

The Skeleton Dance

When I was a kid, it was not Halloween without "The Skeleton Dance." In school, we would sit on the floor and they would show it on the big projection screen.

When I was 10, I commemorated this annual ritual with some "Skeleton Dance" doodles.

The one in the top right that's erased, I think I was trying to show them doing the knee thing at 4:34, but it was too hard to draw.

So please enjoy "The Skeleton Dance" this Halloween. If you like, make your own Skeleton Dance doodles with your kids. You can post them to my Facebook page or tweet them to me from now till 11:59 PM October 31. I'll choose my favorite one, and that person wil win a custom avatar of your choice drawn by me.

Have a happy and ghoulish Halloween!

Wednesday, October 26, 2011

Autism Among Us

Having Asperger's, like Shane Mizell, means
sometimes blending in, sometimes not.

“He’s so rude.”

“That guy must be retarded.”

“He’s just strange!”

Shane Mizell knows other people see him this way, although he’s none of these things. But first impressions form quickly when he’s bagging groceries at the supermarket, sitting in the stands at a baseball game, or just walking down the street. Most people would never suspect that Shane, 21, has an autism spectrum disorder.

“People with autism don’t often have ‘a look,’ so they’re not as easily identified,” says Heidi Mizell, Shane’s mom, who became all too familiar with others’ misunderstandings in the course of raising her son. “Our children look so ‘normal,’ and when they have an unexpected behavior, the public is critical and judgmental.” Indeed, when you meet someone who blends in one minute and appears “different” the next, how to react?

Autism is a spectrum, with mild and severe forms. Shane’s diagnosis of Asperger’s syndrome means he meets many, but not all criteria for autistic disorder. He has difficulty socializing with peers, verbalizing his thoughts, and knowing what someone else is thinking. But even mild autism comes with severe challenges.

When Shane was younger, teachers misread his behavior. “He would be paying attention when it appeared he wasn’t,” Heidi recalls. “He’s one of those kids who needs to fidget to listen, or ‘not look’ to listen.” His teachers were simply unaware a person with autism will typically not look someone in the eye. This is not out of rudeness; they simply prefer to concentrate by processing one of their senses at a time.

Autism is not a disease, but a neurological condition. The autistic brain is slower to recognize social signals like facial expressions, gestures, and tone of voice, and all the subtle information they contain. Ambiguity or surprises can be upsetting, as can crowds or noise. Shane describes it as sensory overload.

“It feels like everything’s starting to surround me,” he explains, “And I need to get to somewhere quiet and calm, and stay there for the rest of the day.” If removing himself from the location is not an option, he may “shut down” and be silent.

People with autism may also appear to have “super senses” due to a highly sensitive brain. “I can hear things that people usually wouldn’t hear,” Shane says. “Really high pitched sounds. I have to point to it and say, ‘I can hear that!’” But sometimes people don’t believe him, he says with a laugh, so he stopped pointing out his super-hearing.

Shane also interprets things literally. Due to a neurological delay in reading others’ tone of voice, people with autism are slower to detect sarcasm or idioms, as Heidi learned on one memorable trip.

“I have to watch how I say things. We almost had an incident in New York City. He stopped in the middle of the street when I told him to ‘walk on ahead.’ He just stopped, because he thought that was humorous!”

Despite its challenges, autism has positive aspects. People with autism tend to be honest, detail-oriented, and good problem-solvers. Often, they focus on a specific subject and achieve high levels of success. But other times, their strengths go unnoticed.

At his supermarket job, Shane has been assigned to bag groceries or retrieve carts. He’d like to do more, like stocking shelves, but doubts they’d trust him with the responsibility.

“I could probably do a lot more. I’m used to being able to do lots of stuff,” he says, unsure of how to approach his supervisor about it. “I’m like the other people. I’m not a different person.”

Families like the Mizells hope to raise awareness and increase the public’s comfort level in interacting with people with autism. After all, many are already among us in everyday life. Most of all, Heidi says, people with autism deserve the same respect as others.

“I like to talk to my friends with autism directly. You can talk directly to somebody with autism. I think many people would prefer to be talked to, than at.”

Shane, for his part, takes his differences in stride. Anyone who takes time to know him will see he is intelligent and polite, with his own sense of humor. Those who don’t take the time, don’t bother him.

“I really could care less about what they think,” he says. With a condition as “invisible” as autism, a little knowledge and respect can go a long way.

This article appears as a leadup to Autistics Speaking Day. On November 1, 2011, autistic people, along with our non-autistic allies, will take a stand in support of autism awareness and autism allies and speak out about our experiences. Visit Autistics Speaking Day on Facebook for more information.

Wednesday, October 19, 2011

The Language of Autism

Christian Smalls, 6, uses the PECS system at school.

Christian Smalls is like a foreign exchange student at age 6. In his world, everyone, even his parents and teachers, uses verbal speech. Christian, who has autism, is nonverbal. Just as he is trying to learn their language, they are trying to learn his.

Many believe children and adults with autism do not communicate at all. In truth, people with autism are more like foreign language speakers. And today, there are many ways for us all to bridge the communication gap.

All of us use alternative forms of communication every day. Body language, gestures, handwritten notes, and social media are like “second languages” that supplement our oral speech. Autistic people who cannot effectively express themselves verbally may prefer one of these alternatives.

Body language may be the most convenient means of expression, but is not always easy to interpret. For instance, Christian’s head-shaking can either mean he’s tired, or trying to relax, says his father, Jerome. Even children who can talk, like Justin Turner, who is 13 and has Asperger’s, may prefer to point when they want something. “We have to remind him, ‘You need to say something,’” says Justin’s mother, Kim. But body language may not always be communication.

“Communication involves two people: Somebody in a ‘listener’ role and somebody in a ‘speaker’ role,” says Dr. Susan Peterson, psychologist at the Delaware Autism Program. If a child grabs at a cookie, or is talking at the wall and repeating “I want a cookie,” he may or may not actually want to eat. Children with autism often must learn to translate a desperate desire for something into a constructive message directed at an audience.

Besides body language, children with autism may also use tools or technology to communicate. Justin has used an AlphaSmart word processor in school, though it took over a year to get it. Technology access has improved in the ten years since Matthew Collins was Justin’s age, but still remains a challenge. Matthew, now an adult with Asperger’s, had the vocabulary of an 11 year old at age 7, but wasn’t a good speller. A computer program would have helped, says his mother Susan, but he never got full use of it. “The teachers didn’t know how to use it.”

The PECS System
One very promising device has no electronic parts. The Picture Exchange Communication System (PECS) lets a child give a picture to a communication partner when they want food, a toy, or an activity. Rewarding the child with what they want teaches the value of communication. Christian uses the PECS at John G. Leach School to ask to use the computer, use the bathroom, or go on the bus. He can also choose rewards, like listening to music, or sensory activities like popping bubbles. At first, he only used PECS at school, but recently, his family has been trained to use it at home. Until now, Christian has used sign language at home, which is discouraged at school in favor of PECS. Dr. Peterson explains why:

“PECS is immediately understandable to a person that hasn’t had any special training. You could go up to a person in a fast food place with a picture message, to order a hamburger and fries. With sign [language], you have to have a trained audience that understands the signs.”

“It’s not as universal as the picture exchange system,” adds Jerome, who continues to teach Christian signs to use around the house. “So at least him and I will know what he wants.” With the help of the PECS, Christian is slowly learning to construct sentences. His teachers say he is using his voice more and more, along with head shaking for yes and no, and basic signs like “help.”

* * *

Though children receive more attention, adults on the autism spectrum have their own challenges with communication. Adults who remain nonverbal may depend on technology like a text-to-speech device to navigate mainstream society. This can help them do grocery shopping; get assistance in their workplace from an off-site job coach; or self-advocate, like YouTube star Amanda Baggs; says Theda Ellis, Executive Director of Autism Delaware. “A lot of our guys have a lot of intelligence behind that nonverbal mask.”

Adults with milder autism use their own set of communication tools. Chris Voss, 26, who has high functioning autism and works in e-commerce, prefers writing over speaking. “I have the time to gather my thoughts and use better word choices,” he explains.

Annette Harkness, 37, is a health inspector who has Asperger’s and an auditory processing disorder. “Talking on the phone is a pain,” she says. “I prefer email, texting, and instant messaging over a phone call any day.” Both manage to communicate effectively as part of their job, and say co-workers are generally understanding of their differences.

Many adults with autism actively use social media; in fact, some see it as a lifeline. C.R. Phillips, 46, who has Asperger’s, says social media is the only time he does any kind of socializing. “I can talk to other people who are like me,” he says. “They’re more comfortable typing and reading than talking in person.”

“Facebook is essentially 95% of my social life,” says Annette, who also uses it to connect to others with autism.

Chris uses Facebook and LinkedIn, and even met his girlfriend through online dating. “I’ve been able to stay as social as I choose to be, getting the space I need,” he says.

* * *

Understanding a child or adult with autism means understanding how they communicate. “It was a learned process,” Kim Turner says of son Justin. She learned he does well when talking about his special interests, but not as well taking phone messages. But for all its challenges, there’s a special enjoyment in talking with him. “The mystery of it all. Becoming a detective and trying to decode!”

Just as every person with autism is different, the right communication tool will also be different for everyone. Dr. Peterson works alongside parents to find what works for their child, and has seen dramatic improvements after the right tool was found. “When the person that has had extreme frustration - self-injury, aggression, tantrums - has a way to simply ask for something, a lot of that literally melts away.”

“Introducing devices early to children can open a whole new world for them,” adds Theda Ellis. Parents of a newly diagnosed child, often unsure where to turn, can find support from Autism Delaware through parent mentors and workshops.

People with autism are easier to understand if one lets go of the idea that verbal speech is the standard for everyone. Though we don’t realize it, the social behaviors we take for granted can make those who are different feel excluded.

“The world’s very confusing to a person with autism,” says Ellis. “We communicate so much through the look on our face, the tone of our voice, or our body language. If you’re not able to read that, you can’t understand each other.”

Chris Voss believes understanding autism disorders takes patience. “We can be just like everyone else, even if we come off slightly eccentric,” he explains.

Annette Harkness hopes people will not be afraid of autism, and parents will not give up hope for their children. “Being autistic is one of the most challenging experiences for me, and yet it has given me so many gifts, I would never change that,” she says. “I would never want to be cured.”

Jerome Smalls looks forward to Christian being able to talk someday, but for now, being a parent to a “foreign exchange student” isn’t so bad. He jokes that their communication is like Star Trek, where he’s speaking English, and his son is speaking Klingon, but, “He understands me, and I understand him.”

“A kid [with autism] is just like any other kid. They have some difficulties communicating, but a kid is a kid, and they just want to be loved.”

This article appears as a leadup to Autistics Speaking Day. On November 1, 2011, autistic people, along with our non-autistic allies, will take a stand in support of autism awareness and autism allies and speak out about our experiences. Visit Autistics Speaking Day on Facebook for more information.

Sunday, October 9, 2011

Here's A Little Post I Wrote. (You Might Want to Read It Note for Note)

Does anyone worry more than an Aspie?

We worry in everyday situations. In the supermarket checkout, did I get everything I needed? Will I attract attention for holding up the line? At work, will my presentation go smoothly? Did I get that phone message right? Meeting someone for an activity, will they show up, and will we have anything to talk about?

Tony Attwood has said Aspies are very good at worrying, pessimism, and generalized anxiety. He notes that 25% of adult Aspies have Obsessive Compulsive Disorder. Our anxiety can come in many types – performance, PTSD from being teased or bullied, sensory, social, or controlling and oppositional.*

Worries can get out of control when we don’t have an adequate support network. When a worry becomes overwhelming, we must figure out whether this is an issue worth seeking advice on. If so, the next problem is how, and with whom, to start a conversation about our worry. Social media and pen pals can be a lifeline. If we didn't have these things, we might keep our worries to ourselves.

I have faced many worries in the past year, and moved ahead in spite of them. I worried I wouldn’t find a new job, but I did. I worried I wouldn’t be social at a party, but I was. Yet, I never seem to learn not to worry the next time. A lifetime of data points telling me worry is useless, but I keep on ignoring the evidence.

A friend pointed out to me that two weeks after I worried about being myself, I was giving advice to my readers to do exactly that. Yeah, I know, I contradict myself. “No, no,” she said, “I was happy how the original stressed you turned into the excited you. Advice is only personal and changes based on our experiences.”

Mark Twain said, “I am an old man and have known a great many troubles, but most of them never happened.” Indeed, much of the worst in life is, in fact, the worrying. The uncertainty, the what ifs, the things that never become reality.

Leo Buscaglia said, “Worry never robs tomorrow of its sorrow, it only saps today of its joy.” True dat.

What would it feel like to be free of worry? How much more would I appreciate the good things, if I stopped worrying about the bad things that never happened? How much healthier would I be, if I stopped worrying about sicknesses I never had? I had a taste of the worry-free life while I was on vacation, but soon enough I was back to my old ways.

Steve Jobs said, “You can't connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something - your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life.”

I am not sure I can trust my future dots. I am not sure I can stop worrying. I would like to – it would be the single best thing I could do for myself, and would not cost a thing. If it were only possible.

How do you deal with your worries? What do you trust in?

* Tony Attwood, “Making Friends and Managing Feelings”, 10/20/10