Tuesday, December 21, 2010

Introducing the Autism Connects design challenge

On behalf of Autism Speaks, Core 77, and Jovoto I invite you to join the Autism Connects design challenge for a chance to win part of a $10,000 prize pool. At IMFAR 2009 we talked about a science contest, and this is the result. We’re awarding prizes for the best ideas to help autistic people overcome communication challenges.

So what, you ask, is a communication challenge?

In this contest, the term “communication challenges” is very broadly interpreted. A technology that helps Asperger people make friends can be considered, as can a device that helps nonverbal people talk. Tell us what challenge your device addresses, and how, and you’re in.

Entries will be judges by a panel consisting of myself, Temple Grandin, Peter Gerhardt, Peter Munday, Andy Shih, Dan Feshbach, Richard Seymour, and others.

Visit the landing page for the site here

College students have been able to register for the competition for a few weeks now and we’ve had good interest with over 100 signing up. The competition site will officially go live on January 3rd for design students to begin uploading their ideas and to receive feedback from the autism liaison community we’ve been busy putting together (we have 100 volunteers who will act as liaisons to provide advice and guidance on the designs).

Here is an essay I wrote on communication, from the contest description:

Everyone with autism has some sort of communication impairment. The terms autism, Asperger’s Syndrome, or PDD-NOS describe some of its different flavors. The various conditions that make up what we call the autism spectrum differ greatly in their impact upon us, but the one diagnostic feature they all have in common is communication impairment.

All autistic communication problems stem from brain dysfunction. Autistic people can see and hear just like anyone else, but our brains may not make sense of those inputs in the conventional way. The same is true for speaking or moving our bodies to convey messages. The physical parts are all there and working normally, but we have trouble using them in the expected way due to our neurological differences.

The most obvious autistic impairment is the inability to understand or deliver speech. In our society, if you can’t understand what others are saying, you are going to be disabled. If you can’t speak for yourself – whether through speech or writing – you are going to be disabled. If you can’t do either, you are doubly disabled.

If you can’t make sense of a phrase like “Bob will pick you up at five,” how will you ever get home? The short answer is, you won’t. An autistic person who cannot understand speech might be likened to someone who speaks English in a town filled with Chinese speakers, none of whom speak a single word of English.

However, there is an important difference between a native English speaker in China and an autistic person. The English speaker has all the wiring in his brain to converse. In a matter of days, he will be working out the meaning of simple Chinese phrases. The autistic person does not have a system for learning language. So he can’t adapt. For autistic people with language trouble, understanding speech can take years. For some, it never happens.

Speech and language impairments are what we might call left-brain afflictions of autism. What about the people with right-brain issues? Those folks may understand the logical meaning of words just fine, but they cannot grasp the emotional undertone. That’s always been my problem. I have no problem with logical meanings, but the unspoken subtext – so vital in expressing emotions – goes right over my head.

For example, when I hear, “That’s just great!” I cannot tell if I’m hearing praise or sarcastic criticism. With no clue how to answer, I respond incorrectly much of the time. That’s the silent communication disability in autism. People who can’t speak are obviously disabled, and cry out for compassion. People with good command of language, but no sense of the unspoken undercurrents, are often perceived as obnoxious, arrogant, or disrespectful. Those negative reactions lead to depression, anxiety, and in extreme cases, suicide or violence.

Some people on the spectrum have a hard time expressing themselves because they are, for lack of a better word, clumsy. That may sound strange, but issues with coordination and fine motor skills can make it hard to form facial expressions or make gestures to convey a message. If you are really ungainly, your meaning may be lost in a dance of strange-looking movements, or rendered invisible with no movement at all.

Where’s Bob? He’s over there. Most of us take for granted the ability to swivel and point so that you are sure to recognize Bob. A person who can’t do that effectively is handicapped just as surely as someone who cannot utter the words. Unfortunately, many individuals who have problems controlling their bodies also have trouble forming the spoken responses, so they are doubly impaired. Physical responses are an expected part of ordinary interchange; people who cannot do that tend to be ostracized, ignored, or subjected to ridicule.

People with traditional autism – also called Kanner’s Autism – tend to have both verbal and physical challenges of varying severity. People with Asperger’s Syndrome (like me) are more likely to have impairment in reading or conveying unspoken communications. Some of us have challenges in both areas.

We now recognize that early and aggressive intervention results in far better adult language skills. That’s why we feel it’s so important to identify and address autistic communication problems as early as possible. Technology plays a key role in both the identification and resolution of childhood communication issues.

For most young people, autism therapy ends when they leave high school. One-on-one therapy is costly; few people can afford it on their own. Adult health insurance is often limited in coverage. That’s why we look to technology to help adults with communication issues. I hope to see the development of devices that assist adults with communication issues at all levels, from helping severely impaired people with basic communication to helping less impaired people interpret the subtlety of facial expressions or nuances of spoken meaning.

Tuesday, December 14, 2010

The meaning of a smile

One of the biggest problems of Asperger people in love is that we can’t tell a false “salesman” smile from a genuine nurturing smile. One smile is delivered for the benefit of the smiler; it’s essentially predatory and self-serving. The second is delivered for us, the smilee. It’s true, open, and giving.

However, without the mechanism for instinctively evaluating other people’s facial expressions, we may use the wrong evaluation criteria. You see, the salesman is often loud and expressive in her expressions, where the true friend is much quieter and more reserved.

In the absence of working instinct, we may choose the salesman’s louder signal as the better one simply because it gets through to us where the subtle signals (those that are really true) are totally missed.

The result can be disastrous, when it comes to romance.

When we respond positively to the salesman, we are in essence accepting her pitch. In commerce, the message might be:

Look at me, I smile and make you feel good, so you will buy your next home from me and I will get a big commission.

In love, the message might be:

Look at me, I smile and make you feel good so you will fall in love with me and buy me things and give me the life I know I deserve.

There is nothing for the recipient of the smile in either of those messages. In contrast, a true message, delivered in the realm of love might be:

Look at me, I smile because I love you and I want to make you happy. When you look happy, I feel good inside.

That message implies a strongly positive and essentially equal exchange for both parties. Laid out in that manner, no rational person would choose to be in the presence of salesman smiles when he could choose a true smile instead. Unfortunately, when people smile at us in real life their expressions do not come with honest interpretive guidebooks. We have to judge with the tools at hand, in our heads; heads which are all too often inadequate for the task.

How do you recognize the genuine smile; how do you tell the person who is true from the one who sees you as a resource to be used, enjoyed, and discarded?

The first tip is that real smiles are not this black and white. Everyone has a mix of salesman and true lover within them. Even the hardest hearted salesman will give a true smile every now and then. And the truest and most nurturing person in the world will still succumb to moments of greed. So it’s a balance; we want to find a person who is mostly true.

So what do we look for?

In some cases, we can look for sudden and dramatic changes in the other person’s indicated mood. A true person, when feeling a strong emotion, will not be able to change their feelings, or their display of feeling, suddenly.

A salesman or trained actor will display any emotion required, at the drop of a hat. That's a skill that comes from one of several sources: In the case of an actor, it results from years of careful practice. In the case of someone else it may indicate a narcissist, a sociopath, or someone who is simply totally superficial. Needless to say, none of those latter things are good attributes in a potential mate.

Therefore, the “trueness” of a person whose signals change suddenly and dramatically is open to question. Tread carefully if you see this.

Another clue comes from the smiler’s other behavior. A true person will display a consistent positive attitude toward you whatever you do, within reason. A salesman, in contrast, will only like you as long as you are doing what she wants.

Ask yourself the question: Is she nice to me all the time, or only on her terms? If you suspect the latter, be wary.

Finally, you can look at the requests that accompany the smile. Are they self-serving, or altruistic?

Think of mom, who smiles and says, Smile for mommy . . . I get so happy when I see you smile! That’s altruistic, and a fair exchange.

Now think of the salesman, who smiles and says: Please will you buy this refrigerator? The smiler’s sole purpose is to sell a refrigerator and earn a commission. To the smiler, the recipient is nothing more than a source of money and a strong back to carry home his purchase.

Requests in love can be complex, but with careful observation, a pattern can often be seen.

Remember, there is always a balance. Some smiles will always be self-serving, even in the best of people. What we want to do is weed the totally or mostly self serving people out of our lives while keeping those that are true close.

Here are a few other thoughts:

True love, and the smile that goes with it, is not manipulative or controlling. True love is unconditional.

True love does not appear overnight, or after two dates, or even after a month. True love builds over time. A true person may not smile much in the beginning but smile more as feelings develop. A salesman smiles more in the beginning, and less later as your feelings develop because her purpose has been achieved and the smile is no longer needed.

True love, and the smile that goes with is, does not hurt. If a person smiles at you, and you wince inside, or wonder, what’s next, be very, very careful.

I wish I could say, read these rules and avoid the pain I’ve been through. Unfortunately, life doesn’t work that way. As a realist, the best I can hope for is that you’ll feel the same hurts I have known, and read this story, and have a flash of insight that perhaps keeps you from being hurt the next time.

As my farmer friends say:

There are some men who read the manual.

There are a few more who learn by watching.

And then there are those who have to pee on the electric fence themselves.

Which kind are you?

Wednesday, December 1, 2010

Help me make a list of Autism/Asperger resources

My next book, Be Different, goes on sale March 29 of 2011. I'm on the home stretch with editing right now. One part remains undone . . . the Reading and Resources chapter. And that's where I turn to all of you for help.

What are some autism books that made a difference in your life? How about non autism books that are relevant, for example, books on body language or social skill?

Do you know any schools that do a great job with our kids? How about college programs?

How about programs for teachers; graduate training or continuing ed?

What about individual speakers, doctors, therapists or psychologists who made a difference?

And what about local Asperger or autism societies or organizations?

As always, thanks so much for your help.