Carly's World: Insight Into Autism

If I could tell people
one thing about autism
it would be that I don't
want to be this way but
I am. So don't be mad;
be understanding.

Those are the words that appear on the computer screen of a 13 year old autistic girl named Carly. The computer uses text-to-speech functionality to talk for Carly. I came across a video about Carly's use of technology on CNN tonight. It was heartwarming.

In a world where the news is nonstop war, death, controversy, corruption and disaster, this was an excellent change of pace. A little more research turned up a few more variants of the story and some interesting sites.

From ABC News,

"All of a sudden these words started to pour out of her, and it was an exciting moment because we didn't realize she had all these words," said speech pathologist Barbara Nash.

Autism comes in many varieties. It isn't well understood, and there is often conflict on what treatments, if any, should be undertaken.

Understandably, this leaves parents in a dilemma: what is the right path to take for their child? How do they know they are on it -- how will they know if they're not?

Carly herself may be unique -- if not a special case, then possibly only representative of a very small portion of the autistic community. Her ability to communicate via technology, however, has definitely gotten some attention.

From the blog Facing Autism in New Brunswick:

The CTV article states that Carly's development of computer assisted communication abilities challenges conventional views of autism. That may be so, at least for some children with autism disorders. But Carly's story also challenges the anti-ABA, anti-treatment, ideology advocated by some prominent "autistics" and espoused by their neurodiversity followers. And challenges their rhetoric that all persons with autism want to remain autistic.

Carly's parents refused to "write her off" and instead obtained intensive ABA (Applied Behavior Analysis) intervention for her.

Many people with special-needs family members, particularly those who cannot speak or communicate, often find themselves in situations where the experts cannot agree on what's going on within their loved one.

I know I ran into that situation often while caring for Mumsie;1 my experience with her and familiarity with her mind and personality often made it easier for me to tell what was going on in her head than the caretakers who often had to proscribe care plans or medications.

It got very frustrating at times.

Carly's ability to demonstrate clear, rational thought and to express that through a computer offers hope that families with autistic members may now gain fresh insight into what's going on inside the heads of their loved ones. The potential for reseachers and experts to learn from Carly also beckons fresh hope.

Note: The next excerpts are from a rather large piece of this article; please go read the whole thing to get the complete context.

As Carly learned to write better, she began describing what it was like to have autism and why she does what she does, such as making odd noises and hitting herself.

"It feels like my legs are on fire and a million ants are crawling up my arms," Carly has written about the urge to hit herself.

[...snip...]

Carly also has expressed her frustration about her condition and about how the world misunderstands her.

"It is hard to be autistic because no one understands me," she writes. "People look at me and assume I am dumb because I can't talk, or I act differently than them... I think people get scared with things that look or seem different than them. It feels hard. It feels like being in a room with the stereo on full blast."

I've worked with special needs people. I've volunteered and assisted quadraplegics and patients with severe neuromuscular disorders that made normal communication difficult. I've seen technology advance in fits and starts to help those who were known to have the ability to communicate but were deprived of an outlet suddenly get a chance to express themselves again, usually in blocky and stilted ways, but at least they were communicating again.

Very few of the ordinary everyday people who encounter autistic folks know how to communicate with them, and even fewer realize that the person inside is usually more cognizant of what's going on that they realize, at least in my observation of the less-severely impaired folks I've worked with.

Carly's case offers some new hope and promise. It's not a technological breakthrough, however. The technology has been around in one form or another for a long time. Carly's case appears to be a special mix of the early, intensive training her parents provided combined with her own capabilities and -- perhaps most importantly -- the recognition of what was happening when she first began to communicate.

[Autism specialist Dr. Wendy] Roberts says it's unclear whether Carly's unusual language abilities makes her a rare case or whether her new writing skills are the result of her intensive training.

She says it's rare for someone with autism to have apraxia -- the inability to speak despite an understanding of language -- as well as such an obvious command of written words. Roberts says it may be that Carly possesses unique abilities that make her a rare case, or it may be that her early and intensive training simply drew the skills out.

The next thing Dr. Roberts observes is, for me, the key:

"What she does is quite uncommon but there hasn't been a really good look at kids with severe apraxia to see what could they be taught with intense teaching," says Roberts. "And that really begs the question of are we giving children enough intensive intervention to see if we are missing a fairly small percentage of kids who have this ability. There may be children being missed because they have not had access to therapy."

"From a broader perspective it puts pressure on us to develop interventions that will allow written language to develop... so that we can develop more effective interventions."

Emphasis added.

It's quite possible that we are not reaching all the people -- children and adult -- who could benefit from the integration of more effective interventions and technology. There could be another equivalent to Stephen Hawking or Albert Einstein in there somewhere, if we could only find a way to identify a key to give them so they can unlock the door and talk to us.

Carly's writings are available online from several of the articles linked. Please check them out and see what you think. I think you'll be impressed. This is yet another case of where secular science steps up and shows its importance in our lives. This is why funding social programs, and programs for the sick, impaired, enfeebled or learning disabled are important. This is why basic science is important, and funding the sciences and education cannot simply "teach to the test" -- too many limits are imposed upon our potential, and that of our students, by doing that.

Namaste.

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Comments

I don't know if you made it to the page that's transcribed some of her conversations but they're pretty amazing.

I really liked the wit and wisdom written into this segment:

I see lots of doctors but they all say the same thing they cant help me

Or they say she should take this medication but it never works

What I want is medication that is going to help me not the doctor

In this passage she offers a solution that I think would cure much of the anti-social behavior of violent criminals, knee-jerk bigots, and possibly even some of the most corrupt of Dick Cheney's ilk:
It is so hard to be me And you would not even under stand I wish I could put you in my body just for one day so you can feel what its like

-----
"I hope we shall crush in its birth the aristocracy of our moneyed corporations which dare already to challenge our government in a trial of strength, and bid defiance to the laws of our country." - Thomas Jefferson

lot of ~regular~ patients feel in this "medicate it with this and don't bother me again" world.

The "walk a mile in my moccassons" equivalent is rather interesting, too. Innate wisdom, with a real-world parallel and understanding of what someone else would possibly begin to understand if they could "test drive" the body of an autistic person.

I reviewed this book a while back because I thought it was such a terrific memoir by an autistic British man. It's a really beautiful book that I think you would enjoy.

carol

Just the title alone intrigues me. I'll add it to the rapidly growing list of things I have to read.

:)

(near the top of the list, of course)