Nonspeaking teen writes profound letter explaining autism

For the first 14 and a half years of Gordy's life, Evan and Dara Baylinson had no reason to believe 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 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 to a police officer. "My body, which is much like a drunken, almost six-foot toddler, resists."


Jahi Chikwendiu / WASHINGTON POST

Gordy Baylinson reaches back to caress the face of his father, Evan Baylinson, during a therapy session with Meghann Parkinson (right).

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. After two one-hour sessions, he had written a nearly 400-word note.

"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."

Unbeknownst to his parents for so many years, their son is a beautiful writer with a lot to say.

Gordy was diagnosed with autism spectrum disorder when he was 17 months old. Gordy, now 16, doesn't speak, but his mind is a treasure trove of knowledge and opinions about the world that he's picked up from listening.

But it wasn't until February 2015 that his parents found that out.

It was then that one of Gordy's many therapists, Meghann Parkinson, started teaching him the "Rapid Prompting Method," a relatively new technique that consists of her asking him questions and him answering by pointing to letters on an alphabet board. In a little over a year, Gordy has advanced to a keyboard, his words appearing in large font on an iPad screen propped in front of him as he types.

It's through his work with Parkinson at Growing Kids Therapy in Virginia, USA, that Gordy wrote an eloquent and poignant letter to a police officer about what it's like to be autistic.

Weeks earlier the Baylinsons, who live in Potomac, Maryland, had seen a flier for an "Autism Night Out" hosted by the Montgomery County Police in Maryland. They asked him if he'd rather attend that or his prom on Friday. He chose the police event. There was an e-mail address at the bottom of the flier, and Parkinson asked him if he'd like to send the officer a letter.

They 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 and empathy and maturity.

The letter reached Laurie Reyes, a police officer that started a department autism outreach program that trains officers on how to approach and handle someone with autism. They get two to four weekly calls for "elopements," which means an autistic child who has wandered off, she said. More than a decade ago she started the unique program to teach officers to treat autistic people with dignity and compassion.

"I always share with the officers I teach to 'never underestimate' a person with Autism," Reyes wrote back to Gordy. "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."

On Wednesday afternoon Gordy sat next to Parkinson at a small desk for his weekly hour of therapy. She had prepared a brief lesson for him about The Washington Post, so he'd have some background about the reporter coming to interview him. Then she asked him about what she'd read. She held the keyboard in the air in front of his face and he outstretched his right arm to type his responses.

Meghann: "What are we talking about?"

Gordy: Today we are discussing the Washington Post.

Q: What is the Washington Post?

A: The Washington Post is a daily newspaper that is located in the District.

Q: When was the Washington Post founded?

A: The Post was founded on December 6, 1877.

Q: Why do you think I read you this paragraph today?

A: We have a lovely guest joining us today from the Post.

With that, he looked back sheepishly at his small audience, his hand outstretched to 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.

Since learning how to communicate, Gordy has continued to amaze his parents with his knowledge. They have been reading about Mount Vesuvius, the only active volcano in Europe, and they asked him if he knew of an active volcano in the United States. He typed, "Mt St. Helen." They'd 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 do comprehend. They've been learning and listening their whole life," said 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."

This happened recently when his 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," Evan Baylinson, 49, said. They've asked him what kind of job he'd be interested in and he said 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's been following the presidential election.

When Gordy answered several questions from a reporter he sat quietly, showing no external signs of all that he was feeling inside. But his answers showed 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 on Friday?

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."

 

Read Gordy's full letter:

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 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 like a daily game, expect 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 difference 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 environment 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 on hundred percent 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 had this opportunity to advocate for myself and other autistics. I look forward to meeting you.

Sincerely, 

Gordy

 

 - The Washington Post

from http://www.stuff.co.nz/life-style/well-good/inspire-me/80210002/nonspeak... and http://www.smh.com.au/lifestyle/life/this-nonspeaking-teenager-wrote-an-...