‘Pity is not what I want’

What does a non-speaking autistic such as Gordy Baylinson think and feel? Thanks to a new therapy, this American teenager has started to explain – and his insights are remarkable 

Colby Itkowitz
Thursday 26 May 2016 11:58
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For the first 14 and a half years of Gordy’s life, Evan and Dara Baylinson had no reason to think their son could comprehend anything they said. He had never spoken, and he couldn’t really emote. They worried aloud about his future, not filtering what they said, because they didn’t think he understood. But Gordy, it now appears, was absorbing everything.

“My brain, which is much like yours, knows what it wants and how to make that clear,” he wrote in a letter he sent last month to a police officer. “My body, which is much like a drunken, almost six-foot toddler, resists.”

He typed each letter one at a time with his right index finger. No one coached him, edited his words or told him what to say, according to his parents and therapist. After two one-hour sessions, he had written a nearly 400-word note. [See full letter below.]

“This letter is not a cry for pity, pity is not what I’m looking for,” he wrote. “I love myself just the way I am, drunken toddler body and all. This letter is, however, a cry for attention, recognition and acceptance.” Unbeknown to his parents for so many years, their son was a beautiful writer with a lot to say.

Gordy’s autism spectrum disorder was diagnosed when he was 17 months old. Now 16, he doesn’t speak – yet his mind is a treasure trove of knowledge and opinions about the world that he has picked up from listening. And it wasn’t until February 2015 that his parents found out.

It was then that one of Gordy’s many therapists, Meghann Parkinson, started teaching him the Rapid Prompting Method, a relatively new communication technique developed for people with severe autism. She asked him questions and he answered by pointing to letters on an alphabet board. In a little more than a year, Gordy has advanced to a QWERTY keyboard, his words appearing in large font on an iPad screen propped in front of him as he types.

The technique is very controversial, with some experts convinced that therapists are leading the autistic children who employ it. But others say it’s possible that in a minority of cases people like Gordy can learn to communicate independently using the technique and can benefit from it.

Professor Connie Kasari, a well-known expert in autism and a founding member of the Centre for Autism Research and Treatment at UCLA, says the question of whether RPM works is a “highly charged issue”, but that she tries to keep an open mind about evolving communication methods for autism.

“I’m not going to be a naysayer,” says Kasari. “Some kids will benefit, some kids will not. It’s not one size fits all. Some individuals who aren’t verbal are incredibly smart.”

Gordy’s father was initially sceptical. He knew there had been controversies with forced “facilitated communication”. But the more he watched, the more he said it became clear to him that these words were Gordy’s and Gordy’s alone. And it’s because of Gordy’s work with Parkinson –at Growing Kids Therapy in Herndon, Virginia – that he wrote an eloquent and poignant letter to a police officer about what it’s like to be autistic.

Weeks earlier, his parents, who live in Potomac, Maryland, had seen a flier for an Autism Night Out held by the Montgomery County Police Department. They asked Gordy if he’d rather attend that or his prom – and he chose the police event. There was an email address at the bottom of the flier, and Parkinson asked him if he’d like to send the officer a letter.

The Baylinsons had no idea their son had strong opinions about the police or the treatment of autistic people. But they sat stunned as the words poured out of Gordy with humour, empathy and maturity.

The letter reached Laurie Reyes, a police officer who had started a unique autism outreach programme ten years before. (This trains officers on how to approach and handle people with autism, and how to treat them with dignity and compassion; they get two to four calls per week for “elopements” – which means an autistic child has wandered off – she says.) “I always share with the officers I teach to ‘never underestimate’ a person with autism,” Reyes wrote back. “I also teach them to not associate non-verbal with a lack of intelligence. I continuously stress those two thoughts to my officers. Gordy will help to reinforce this idea yet again.”

Last week, the Baylinsons took me to see Gordy during his hour-long weekly therapy session. I observed closely while Parkinson held the keyboard still in the air in front of his face, and he stretched out his right arm to type his responses. She didn’t visibly prompt him or move the keyboard, but did repeat back to him out loud the letters as he typed. Before I arrived, Parkinson had read him a brief, typed statement about my profession and place of work; and after some warm-up questions, she asked him: “Why do you think I read you this paragraph today?”

“We have a lovely guest joining us today…” he typed – and with that looked back sheepishly at his small audience, his hand reaching toward his proud father.

Throughout the session, Gordy sat with one leg tucked under him, clutching a pink stress ball with squishy spikes — he needs to keep his hands occupied. The small room was dimly lit because Gordy told them the soft buzz of the fluorescent lights was distracting.

Gordy’s parents say that he has continued to amaze his parents with his knowledge since he learned to communicate. They were learning about Mount Vesuvius, the only active volcano in mainland Europe, and they asked him if he knew of an active volcano in the United States. He typed, “Mt St Helen.” They said they never taught him that. He had seen it once on the cover of a magazine in a doctor’s waiting room, he told them.

“They [autistics] do comprehend. They’ve been learning and listening their whole life,” says Elizabeth Vosseller, the director at the therapy centre. “All the information is constantly going in and they never really forget it. It’s such a revelation — so much is revealed about the kids when they start sharing.”

Like, recently, when Gordy’s parents showed him photos from his bar mitzvah and he asked why he’d never seen them before. He wanted his own copies on his iPad. For six months before the Jewish rite of passage, a therapist had worked with him to sound out the Hebrew words to the first line of the “Shema,” a daily prayer. It was a huge achievement for him. But his parents had never thought to show him the photos.

“The sky’s the limit for him now. I believe he can do whatever he wants,” says Evan Baylinson,. They’ve asked him what kind of job he’d be interested in and he says that he’d like to be a researcher for Time magazine. Now that they know he understands, they’ve been reading him Harry Potter. He has been following the presidential campaign.

When I visited Gordy, he sat quietly, showing no external signs of all that he was feeling. But his answers to my questions show that he feels profoundly.

Q: Why did you write your letter?

A: Meghann suggested it and I’m so glad, it was something my entire being felt compelled to do.

Q: Why did you feel so strongly about it?

A: I’ve heard too many tragic stories of the mistreatment and mishandling of autistics due to lack of knowledge. It breaks my heart because I know no one is truly at fault.

Q: Are you excited to meet everyone [at the Autism Night Out]?

A: Absolutely, I never expected this but I’m jumping around like a madman inside.

Q: What is your favourite thing to do?

A: I love learning new things, iPads, I love communicating and typing with this gal on my right.

Parkinson blushed and tousled Gordy’s hair. “Oh, Gordy,” she said, teasingly.

Then she asked him if he had any closing thoughts.

“Thank you for seeing my potential,” he typed, “and helping my words, my story, and my manly voice get out there.”

© Washington Post

Gordy’s letter in full

My name is Gordy and I am a teenager with nonspeaking autism. I prefer this term rather than low-functioning, because if I am typing you this letter, which I am, I am clearly functioning. I felt very strongly about writing [to] you today, to give a little extra insight on the disconnected links that were supposed to make my brain and body work together in harmony. But they don’t and that’s okay. You see, life for me and others like me is a daily game, except not fun, of tug-of-war. My brain, which is much like yours, knows what it wants and how to make that clear. My body, which is much like a drunken, almost six foot toddler, resists.

This letter is not a cry for pity, pity is not what I’m looking for. I love myself just the way I am, drunken toddler body and all. This letter is, however, a cry for attention, recognition and acceptance. With your attention, I can help you recognise the signs of nonspeaking autism. If you can recognise the signs, then you will be able to recognise our differences which then leads to the understanding of those differences, which brings us to the wonders of acceptance. With these simple ingredients, together we can create a safe, welcoming and happy environments for both autistics and neurotypicals alike.

The physical signs to look for are flapping hands or some other socially unacceptable movement, words, noises or behaviour in general. That’s uncontrollable. With a mind and feelings much like everyone else’s, do you truly believe we like acting that way? I don’t, that’s for sure.

If one becomes aggressive, with biting or hitting for example, obviously protect yourself but there is no reason to use aggression in return. Remember, this aggression is an uncontrollable reaction, most likely triggered by fear.

Nothing means more to people like us than respect. I can tell you with almost 100 per cent certainty the situation will go down a lot easier with this knowledge.

I have nothing but respect for you all and everything you do. If it weren’t for you, I would never have this opportunity to advocate for myself and other autistics. I look forward to meeting you.

Sincerely,

Gordy

Spellings have been anglicised

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