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Transcendence: Jacob Artson’s eloquence and spirit defy his severe autism diagnosis

Questions for Jacob? Ask in the Jacob Arston topic in the Reader Forums

by Julie G Fax

October 2, 2008 | 12:07 am

Jacob Artson needs a break. He's expended a huge effort keeping his movements and tics under control for the past 45 minutes, and he's ready to release some energy.

As I talk about Jacob's journey through severe autism with his parents, Rabbi Brad and Elana Artson, Jacob takes a noisy stomp around the house, upstairs and down, banging, singing, letting out some guttural vocals.

It's hard to reconcile this outward behavior with the lucidity of the ideas he's been sharing with me.

"You hear so much from autism organizations about what a horrible disease this is and how the parents have been robbed of their children, yada, yada, yada, and I suppose on a certain level that is true," Jacob told me, typing the words on a special keyboard that allows him to fully express his ideas. "But I refuse to live the rest of my life believing I am a defective human being. I have gifts and talents and challenges just like everyone else, and I have the same desire for connection and a need to be treated with dignity and respect."

Words like these coming from an autistic boy are moving and stunning on their own, but when Jacob comes back from his break, he astonishes again: First he smothers his mother and father in hugs and kisses and then offers commentary on the things they've been saying while he was gone.

Jacob can hear through walls.

In fact, Jacob Artson, who just turned 16, has spent his life facing down walls -- working through them, over them, around them, or sitting right on top of them with his feet dangling over the edge.

Jacob is considered severely autistic -- it takes great effort for him to regulate his movement and his behavior, and he has very little spontaneous, relevant speech.

At the same time, he is intelligent, optimistic, spiritual, witty and more emotionally attuned than most people.

He conveys his thoughts through a method called "facilitated communication," which means Elana, or another facilitator, holds a hard plastic card the size of a take-out menu with the standard QWERTY keyboard printed on it. As we talk, Elana supports Jacob's wrist and helps keep him focused and calm. She reads aloud as his finger skims over the board.

In this High Holy Day season of cheshbon hanefesh -- accounting of the soul —Jacob puts into stark relief the notion that the outer self is not always a reflection of the inner. His reality challenges us: Do we judge people by what we see? Do negative myths become self-fulfilling prophecies, or do we summon all our resources to shatter those myths, as Jacob and his family do every day? Do we define ourselves by our limitations, or do we forgive our own shortcomings? And are we capable, like Jacob, of transcending obstacles? Of listening through walls?


ALTTEXT
The family visited the White House during the "Opening the Gates of Torah" conference in Washington, D.C., December 2007Shattering Myths

Over the past two years, Jacob has addressed audiences in Chicago, Washington, D.C. and Los Angeles, and he has more public engagements this year. For these, someone reads aloud Jacob's speech, and then he uses facilitated communication to answer questions.

His impact is tangible.

When Jacob was 14, he spoke before 200 middle-school kids and their parents about the huge benefits he's gotten from Team Prime Time, a sports program where kids from disadvantaged areas coach kids with special needs. The next day, 120 seventh- and eighth-graders signed up to volunteer as coaches.



You can read one of Jacob's speeches 'Opening the Gates' here.

"Once Jacob is given the chance to communicate, he blows everyone away, because you don't expect him to be the smartest one there," said Peter Straus, who runs Prime Time. "He's the best ambassador we have for these kids, because we can point to Jacob and say don't underestimate them, because there's Jacob."

Jacob has been willing to put himself in the public eye because he is eager to debunk myths about autism -- that autistic kids can't process emotion, can't engage in higher-order thinking, must be trained in normative behavior before they turn 5. While every autistic child has different strengths and weakness, too often, those ideas become self-fulfilling prophecies, Jacob said.

"After years of being told that they will never amount to anything, most kids give up trying. Not just kids with autism -- I see it at school everyday. The biggest obstacle is that the kids don't believe they are capable or worthy of success," Jacob said.

A support system of innovative and caring professionals, sensitive friends and his own tireless parents has allowed Jacob to believe he can succeed.

One by one, he's taken down the myths.

He is emotionally astute:

"He's a really good reader of moods," said Rabbi Brad Artson, dean of the Ziegler School of Rabbinic Studies at the American Jewish University. "He can tell me 'Ima is mad at you' hours before I know. He notices if we need a hug, or company, or he can say, 'I just want to hang with you right now, put that down.' No one said autistic kids are supposed to do that, but he and all of his friends do that all of the time."

He thinks about abstract things, like God:

"People with autism sometimes have a hard time organizing where their body is and being able to integrate various types of input, but when I am in God's presence, that is the one time I feel totally integrated with my ears and eyes and heart and touch and body, all in the same place," Jacob said. "For me, praying or studying parsha or other Jewish texts is not primarily intellectual, it is something that I do to feel like my body and mind and emotions are all connected."

He wants to be a writer when he's an adult, and he also wants to teach Torah, which he studies with his father.

He has deep and meaningful friendships with autistic and non-autistic kids:

"A friend is someone who smiles at you differently from everyone else and notices your presence in a special way," he wrote in an e-mail, when I asked about his friendships. "We don't talk, obviously, but we communicate a lot through body language and facial expressions. I can tell when my friends are happy or scared or bored or feeling infantilized, and they can do the same with me."

He calls his mother his "rock" and enjoys his father's playfulness and intelligence.

He can't say enough about his twin sister, Shira.

"She has been my chief source of joy and laughter since we were born. Shira is my best friend, my cheerleader, my hero, my advocate, my social secretary, fashion consultant -- I would be totally lost without my other half."

Shira, a sophomore at New Community Jewish High School, said any essay she's ever had to write about a hero has been about Jacob.

"He's an amazing guy. He's inspired me and showed me that if you work hard, you can pretty much do anything," Shira said.

Slipping Away

It's been a long road for Jacob to get where he is, and Jacob tells me about it as we sit down to talk in his living room.

"I was diagnosed at age 3, but I knew long before that that something was wrong with me, which was gradually depriving me of my ability to engage, and it terrified me because I had no idea what was happening," Jacob said. "I remember being able to play with my wonderful Shira for hours without getting totally overloaded with sensory stimuli, and also I was starting to talk. But I got stuck, and Shira took off."

As his finger glides over the keyboard -- he doesn't look at the letters as he types -- a slight smile sits on his fleshy face. His yellow-flecked hazel eyes seem to be focusing on something in the distance, as if he's engrossed in a movie.

"When I was first diagnosed, there was always a noise in my brain that sounded like static," Jacob said. "It was really annoying and made it very hard to focus."

A psychologist taught him how to focus on one thing at a time. "As difficult as it was for me to try to speak or keep engaged, I tried mightily because he believed in me."

As intelligent conversation comes out of Jacob's left hand, his right might be playing with his toes or tugging at his thick hair. He may suddenly start singing "Shabbat Shalom, Hey" or "It's a Small World," or screaming out phrases like "Jungle Book," or "I'm hungry, Abba."

Jacob is at the extreme end on the autism spectrum, an array of sensory input, motor and regulatory disabilities that manifests differently in each person affected. Autism Spectrum Disorder affects one in every 150 kids born in the U.S., according to a 2007 report. Before the numbers started going up in the 1990s, the rate was about one in 2,000 births.

"I think that being autistic means that it is hard for me to control my body and my emotions, because I have such strong feelings, and I can't shut it down," Jacob explained.

Overexcitement can trigger his tics, or paralyze him, especially if there is an activity he's excited about.

He has poor motor functioning, and after years of work, he can sink a basketball and get himself dressed. He has almost, but not quite, mastered writing his own name with a pencil. Typing has taught his brain and body to work together and improved his timing.

In an e-mail, I asked Jacob what it is like to have his body and his thoughts doing such different things.

"I hate all my tics," he answered. "I have a disconnect in my brain between what I'm thinking and the output. My typing is what I'm thinking and the verbal tics just come out. They aren't what I'm thinking about, but they are related in some way to the emotion associated with what I'm thinking about. So if I am thinking about feeling successful and flying, then the tics that come out may be from Disney songs that are related to soaring ... Maybe my brain goes to the right file drawer but just accidentally pulls out the file next to the one I want."

'Open My Lips'

Jacob's life changed dramatically when he was 7. Until then he couldn't communicate well either through words or body language.

The Artsons heard about a speech therapist in Whittier who taught non-verbal kids to type. Although they thought Jacob couldn't read, they decided to give it a try.

While the speech therapist supported his arm, Jacob correctly pointed to words and letters on a card. He identified the word "book." Asked what he watches, he pointed to the word "video." Asked what he eats, though, he was stuck. The word on the board was taco, and Jacob had never had one.

When the therapist asked him a question and he couldn't find the word he was looking for, he typed, "H-e-l-p m-e."

Elana got home and called Brad.

"I said there has to be a bracha (blessing) for this, because there is a bracha for everything miraculous, and I have just witnessed the most miraculous thing. He knows how to read and how to think, and he has communication. Now we have to find a way to help him bring it out," remembers Elana, who works part time as a prosecutor in the appeals division of the U.S. Attorney's office.

Later that week, she found the prayer: "God, open my lips, and my mouth will utter Your praises."

They pursued facilitated communication despite studies in the 1990s that purported to show that the facilitator was subconsciously channeling his or her own thoughts through the autistic child -- sort of like a Ouija board effect.

Elana said those studies are not only bad science, but destructive, robbing people of a basic human right of self-expression. She has hundreds of examples from Jacob's experience that shut down persistent doubts from others about whether the thoughts are originating in his mind.

She said Jacob has been able to accurately report things that happened in school that she had no knowledge of, or details about himself she couldn't discern, such as which of his ears is infected. Facilitated communication allows him to calm himself down once he is able to explain what is bothering him.

"Facilitated communication has saved my life, because now that I can communicate I can participate in the world as an equal," Jacob told me.

Life, Not Therapy

Along with using facilitated communication, the Artson's opted out of the normative treatment of autism, which uses behavioral therapy to train kids in the life skills they need through repetitive teaching and reward systems.

Instead, Dr. Ricki Robinson, Jacob's pediatrician, taught them to use a method called Floortime, in which parents insert themselves into the child's world of play and movement, so that the child has to respond and eventually develop abstract thinking.

"For me Floortime was a savior, because it showed me how to live life with joy and laughter, and that is the reason I keep fighting every day to overcome my challenges," Jacob said.

Jacob engages directly in life and learns skills that way. He has a full schedule of sports and social opportunities, and has attended public schools most of his life. Now a 10th-grader at Hamilton High school, he is mainstreamed for three classes -- history, English and biology.

He loves school.

"Last year, I took a health and life-skills class, which the rest of the people consider to be stupid and a useless requirement, but I learned so much in those classes about the diversity of human experiences," he said.

Finding out about kids in his class who had been pregnant or tried to kill themselves put things in perspective for him: "I am so blessed compared to the challenges I see my classmates facing."

That kind of perspective is what family and friends say Jacob has offered them.

"Having a child with special needs forces you to focus on what it is we really want to teach him -- what is important to having a happy and meaningful life," Elana said.

"The story of finding out who my child is and watching him unfold into this amazing human being is such a remarkable experience, I just feel like it's intoxicating. I push him because I want more, I want to know who he is," Elana said.

And Jacob, too, is learning more about who he is.

"When I was younger, I was constantly angry at autism for limiting my motor functioning so much. Dr. Ricki has worked with me for years on this issue, and I am in a very different place now. I feel at peace now," he said.

"I've learned about myself and the world because of the challenges I have to face," he said. "I know that having autism has made me who I am, and I wouldn't be me if I didn't have autism."



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