Inertia Weevil

What is autistic inertia? Find out more.

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.

Dragon

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

Idiompressive

Suspend Disbelief

I have been on the adventure of a lifetime.

In the morning, I’ve risen before the sun, awakening to the stillness, the lapping of the water below, the calls of birds, and the distant tolling of the harbor bell.

In the evening, I’ve sat by the fire, detached from my electronic gadgets and not missing them, instead having conversations, and playing cards.

I've seen water so blue, it stops you in your tracks, unable to avert your eyes.

I’ve been to the top of a mountain where the wind stuns, and the mist hangs in plumes at eye level.

I’ve soared over the water aboard a speedboat, along the coast, the ocean spray against my face, past seals, birds, and sailboats, all cares melted away.

I’ve ventured to a tiny island, completely removed from civilization, exploring with careful steps from rock to rock, an otherworldly place all to myself, knowing I would never return to.

I have seen paradise, I’m quite sure.

All because four months ago, I let my old reality burn.

Ten days ago, I returned from a stay in Northeast Harbor, Maine, with my ten co-workers. This was a staff retreat, at my new job. The one I took after I was laid off. The one I accepted with uncertainty, but with a good gut feeling. The one where I had just begun to settle into a new routine and new culture.

One door closes and another opens, I wrote four months ago. But who in their wildest dreams could have expected this? You just never know, when you take a job, what it might lead to, how it might change your life.

As the Asticou jetted along the water under picture perfect skies on a Monday afternoon, I was awestruck simply to be right here, right now. I marveled at the chain of events that fell into place to make this possible. So unlikely, and yet it was happening. I sat and soaked in the constant whirr and vibration of the boat, the wind and the ocean spray, wearing a stupid silly grin. I just couldn't help it. Because instead of sitting at my office desk in Chadds Ford, PA, I was miles and miles away, seeing this,

and this,

and this.

We took the retreat for team building, and it was undoubtedly a success. There was no curriculum. There was no Power Point. We grew as a team naturally, over the five days, by cooking our meals together, navigating our way in the van, and finding fun things to do. We could be people, not co-workers, and so we got to know each other as people.

I talked at length about Asperger's one night, over appetizers of smoked salmon and crackers, at a restaurant called Red Sky. Peppered with questions, I was happy to answer. I coined a classic phrase, "more time and data points." But one question surprised me:

"How come you don’t ask us questions about our lives? Is it because you’re not interested?"

Oh! I didn't realize. Of course I am interested in you, I explained. I learn about you by listening, observing, and asking when I feel the time is right. Please don't be offended if I don't ask. And on and on, we continued to learn from each other.

I wrote back in May:

It can be hard to find guideposts as that reality shifts and reshapes, but I need only remember to be myself, and be proud of who I am, as a person with Asperger’s. If I can do that, I am sure to emerge stronger from this crisis.

I think I have followed this advice, and I think I have emerged stronger. This week you may have read the story of Justin Canha, who found his place in the workplace. I have found mine as well. Even before we went on this amazing trip.

If you’re on the spectrum and job seeking, my advice to you is to be yourself, and good fortune may yet come your way.

If you’re an employer with an opportunity to hire a neurodiverse workforce, do it. Then give them the opportunity to gel as a team, organically. You don't have to take them to Maine. Just let them be people.

And my old job? My replacement quit after four days. And to my knowledge, only a part-timer has been found to fill the position.

In my bedroom at the cottage in Maine, there was a sign on the dresser. It said, "Suspend disbelief." I left for the trip as a new employee; I returned as part of a team. I came in having traveled very little; I returned with the travel bug, and a promise to myself to travel more. It all seemed unbelievable at times, but I suspended disbelief, and returned with more than I ever thought possible.

Calibration