LOS ANGELES — For the first seven years of Jacob Artson’s life, his family believed the doctors who labeled their nonverbal son with autism as “mentally retarded.”
And yet, just before Jacob’s seventh birthday, a miracle happened. Jacob’s social skills therapist told the family about facilitated communication, a method by which a facilitator attempts to teach individuals with a disability to organize and control their body and attention in order to communicate by typing.
Jacob’s mother, Elana Artson, told The Huffington Post in an email that when she first heard about the method, she “didn’t expect anything to come of it. Jacob couldn’t read, so how was he going to type? But I figured that I would be able to say that we had tried before crossing it off our list of possible therapies.”
So Elana took Jacob to see Darlene Hanson, a speech therapist who is now the director of communication services at Whittier Area Parents’ Association for the Developmentally Handicapped (WAPADH) in Whittier, Calif. Elana described in an email what happened in the first hour Jacob was with Hanson:
“Darlene wrote eight words on a board — shoe, bus, house, etc. — and asked Jacob, ‘Which one do you ride to school?, Which one do you wear on your foot?, Which one do you live in?’ Each time, with her providing support, he pointed to the correct answer,” Elana wrote. “She gave him a break, and he went to look at some model trains in the corner of the room (like many kids with autism, Jacob was fascinated by trains).
“Then Darlene took out a portable keyboard. She said one of those trains had ‘Santa Fe’ written on it. ‘Can you type Santa Fe?,’ she asked. Jacob typed ‘Sants 4e.’ I started to get excited — if she was moving his hand, she wouldn’t have let him overshoot the correct letters, right? Next question: ‘What is the car on the back of the train called?’ Jacob began to type h-e- (okay, deflate — This wasn’t real, I’m thinking to myself) -l-p-m-e. Then she asked him a series of questions and asked him to type Y for yes and N for no. ‘Did you type Help me?’ – Y. ‘Do you need help spelling?’ – N. ‘Do you need help typing?’ – Y. ‘Is holding your hand helping?’ – Y.
“What happened during that hour changed Jacob’s life (and ours) more dramatically than I ever dreamed possible,” Elana added. “In Judaism, we have a blessing for everything.”
As she recounted to HuffPost, on the car ride home from the first meeting with Hanson, she called her husband, Jacob’s father, Rabbi Bradley Shavit Artson, and said, “‘There must be a blessing for this because I’ve just witnessed something completely miraculous. I think Jacob can read and spell.'”
Over the next few weeks, Elana and Brad began to realize that, although Jacob’s motor processing was challenged, his cognitive skills were intact. Jacob, who is now 19 years old, was freed from the constraints and misunderstanding that had come from being nonverbal. Elana, Brad and Jacob’s twin-sister, Shira, got to know their son and brother for the first time.
In her email to HuffPost, Elana recalled some of the first times Jacob was able to clearly communicate with his family:
More and more information spilled out as he began to explain what having autism was like for him and what we could do to help him. One day, Jacob woke up totally out of sorts. ‘My ear hurts,’ he typed. ‘Both ears?,’ I asked. ‘No, just the left one.’ We went to the doctor, and, indeed, Jacob had an infection in his left ear but not the right one. He told me the name of a boy in his class he wanted to have a play date with. He had always hated going to the synagogue on Purim (the kids dress up, and there is a very chaotic celebration) but he typed that he wanted to be Thomas the Tank Engine. With his Thomas the Tank Engine costume, Jacob sat though all the noise and chaos with the other kids.
Jacob’s parents recounted other breakthroughs, including when Jacob typed that his tantrums one week were due to missing his twin-sister, Shira, who was away at camp. “I was flabbergasted,” Jacob’s mother wrote. “Jacob used to play with his sister all the time when they were younger, but I wasn’t sure how aware he was of her anymore.”
In an email to HuffPost, Jacob’s father, Brad, depicted a more recent moment of communication that he said was particularly meaningful:
We were on a plane, and Jacob typed to me how angry he was at me, how I had upset him at the airport — the kind of criticism of parents that typical teenagers share verbally. As his criticisms of me continued (I was not expecting them!), we both realized what a breakthrough this moment was. At that point, he and I became too excited to continue typing. He typed how awesome it was that he could chew me out in private, and I responded that he was now a real teenager! We spent the rest of the flight smiling and hugging each other!
Perhaps what is most remarkable about Jacob’s ability to express himself through typing is how eloquent, thoughtful and intelligent he is. He sent an email to HuffPost explaining what it was like for him before he could communicate. “Before I was introduced to typing, I had retreated into anxiety, fear and despair. I read everything around me from books to TV credits to the newspaper on the kitchen table but I had no one to share my ideas with so I just retreated into my own imaginary world. I wasn’t suicidal because I have an incredibly supportive family, but I was constantly frustrated at my limitations.”
Jacob also described the moment he learned to type. “Suddenly, the whole world opened. At first, it was so hard to get my body organized that I could only get out a word or two. But the more I practiced, the more I could type. It was such a total high to share what had been bottled up inside me for years that I couldn’t wait for the next opportunity to type. My family had so many questions for me and I had so many questions for them. It was heaven on earth.”
Darlene Hanson, who still works with Jacob on his typing, explained to The Huffington Post that the definition and understanding of autism has changed in the last 15 years. “Previously, everyone thought people with autism were retarded. Even now, children who actually have autism are labeled as mentally retarded because they fail to perform on school tests,” she said. “But we understand autism as more of a movement disorder now. People with autism often have difficulty communicating, but that doesn’t mean the cognitive ability isn’t there.”
According to Autism Speaks, autism is the fastest-growing serious developmental disability in the country, and more children are diagnosed with autism than with AIDS, diabetes and cancer combined. According to the latest Center for Disease Control report (2009), approximately 1 in 110 children and 1 in 70 boys nationwide have autism, and it is estimated that about 30 percent are nonverbal. The number of nonverbal individuals with autism who have learned to type is unknown, although WAPADH is compiling a database for this purpose.
In addition to WAPADH in California, Syracuse University’s Institute on Communication and Inclusion (ICI) is the only other facilitated communication training center in the country. For those who don’t live in Southern California or in the New York City area, ICI has a bank of names of trainers nationwide who can teach facilitated communication.
Hanson said she believes facilitated communication is not more common because there is a lack of awareness about it and a lack of professionals who teach it. Additionally, although it can be taught to individuals of all ages, it doesn’t work for everyone, she said.
Facilitated communication has sparked controversy for decades, with skeptics saying that the ideas being typed can be influenced by the facilitator. Connie Kasari, a professor at UCLA’s Center for Autism Research & Treatment, told HuffPost in an email, “FC [facilitated communication] is misused I think when persons are prompted forever. You have to be sure the person is initiating the communication and that it is not entirely facilitated and not the individual’s thoughts.” She added, “But to say that a kid who is nonverbal needs access to communication is an important message.”
For Jacob, facilitated communication means that someone needs to touch his elbows while he types on a computer or his iPad. “He says that if we don’t touch his elbow, he’s thinking about a Disney movie or people in his life,” Hanson said. “He has to turn off this other noise that’s going on in his head in order to type. Someone touching his elbow helps Jacob focus on what he wants to type.” Hanson was clear that the goal with facilitated communication is always for the subject to become an independent typer, and she believes Jacob is not far from reaching that goal. Hanson is also working with Jacob to improve and better control the minimal speech abilities he has.
Jacob is now able to work toward his high school diploma so that he can attend college. He has traveled to New York City and Washington, D.C. to give speeches and presentations, which are read aloud for him and followed by audience questions he answers through typing.
Jacob wrote to HuffPost that typing has also increased and improved his social interactions, including “teaching about autism at school and at my sports programs, participating in the teen Bible study class at my synagogue, writing a song for a musical theater production I was in, chatting on Facebook and texting my sister.”
Jacob’s goals after college are to advocate for the inclusion of all people and to become, not surprisingly, a writer. For those of us who don’t understand or know how to act in the presence of someone with autism, Jacob has some advice. “For people with autism, every day is an unending struggle to remember that we are not so different after all. You can help by smiling at us, by welcoming our presence and encouraging our participation. In the end, it comes down to recognizing God’s image in every single human being.”