October 22, 2004
... Ms. Krieger's planning made possible what most parents take for granted: a child's participation in family activities and community events like a meal in a restaurant, a trip to Disney World or a movie. None of these come naturally to children with autism, a mysterious brain disorder that affects the ability to communicate, form relationships, tolerate change and otherwise respond appropriately to the outside world.
Exposing Gina to these experiences would have been unthinkable a decade ago, but more and more families with autistic children are finding that techniques that have proved successful in the classroom - behavioral methods that evolved from the psychologist B. F. Skinner, visual instruction and adaptations of the environment - can be tried at home not only to maximize learning for an autistic child but also to improve the quality of life for the rest of the family.
If the skills and behavior of the autistic child improve, experts say, parents and siblings have more choices of leisure and other activities, and less sense of stigma and isolation.
"It doesn't matter if a kid can read and write and do algebra if he can't go out to dinner with his family," said Bridget Taylor, co-founder of the Alpine Learning Group in Paramus, N.J., a school for autistic children that was the model for the neighboring EPIC school, which Gina attends. "To me, half the battle of autism is getting these kids to be active, functional members of their families - and getting the families themselves active and functional."
... Except for guidance from educators, organized resources for these families are scarce. In New York, there is a support group for siblings on the Upper West Side and religious instruction for autistic children at a few Westchester synagogues. There is also a new Web site from the Autism Society of America and home visits by therapists from special schools.
Parents with fortitude, time and money have an edge. Ilene Lainer, for instance, had the luxury of leaving her job as a labor lawyer when autism was diagnosed in her second son, Ari, 8. Now she is a fulltime autism mom, prepared to spend as long as it takes to teach her son, who cannot speak, how to live in the world. Take haircuts. First Ms. Lainer took Ari to the barber, as she had her 10-year-old son, Max. The result was a "hysterical, screaming child," she said, and rude comments - "Can't you control your kid?" - from other customers who could not see that the boy was disabled, as they would have if he had been in a wheelchair.
So, with guidance from Ari's teachers at EPIC, or Educational Partnership for Instructing Children, Ms. Lainer tried a step-by-step approach. She trimmed the boy's bangs, one snip at a time, until he could tolerate that sensation. Then she moved on to a daily spritz of water on Ari's face. Finally, she let small bits of hair land on his skin. Eventually, he was back in the barber's chair, even if sometimes in the lap of his mother or father, Steven Kantor.
... Any excursion away from their Upper West Side home causes Ms. Lainer to "hold my breath that something doesn't go wrong." Dinner at a friend's house is usually fine if Ari can watch a favorite video.
... Meltdowns are routine to these families. Marjorie Madfis of White Plains, for one, knows how easily a plan can veer off course. Wanting her 8-year-old daughter, Isabelle, exposed to Judaism, she enrolled her in special classes and also joined a synagogue. Isabelle did well at a family Shabbos dinner, so Ms. Madfis confidently brought her to a short children's service on Yom Kippur.
Isabelle brought her favorite American Girl doll, and somewhere between the house and the synagogue one shoe fell off. Ms. Madfis and her husband assured Isabelle that they would find it or buy a new one. "But she couldn't let go of it and bounce back," Ms. Madfis said. "We had to take her home."
Autism symptoms vary widely, and the disorder is sometimes coupled with retardation, which makes most teaching techniques ineffective. So Isabelle is considered lucky. In the past year, Ms. Madfis, a marketing manager at I.B.M., enrolled her in a mainstream ballet class and soccer program, sending along a description of Isabelle's strengths and weaknesses and 10 suggestions for avoiding disruptive or ritualistic behavior, which generally occurs when a child cannot follow what is going on.
Ballet was successful; soccer was a disaster. Isabelle could not tolerate the noise and bustle at a game. First she retreated, picking flowers and looking up at the sky while the game swirled around her. Finally, hands over her ears, she walked off the field.
Isabelle's soccer coach, Angel Tinnirello, said her behavior was not that unusual among second-graders on a team that is recreational, rather than highly competitive. The other children readily accepted Ms. Tinnirello's explanation that "it got too noisy" for Isabelle, so "she went over there where it's a little quieter." The referees, she said, required more education. They asked, "Why isn't that kid listening?" when Isabelle took off down the field in the wrong direction. "Just remind her to run with the purple shirts," Ms. Tinnirello said.
Sometimes the very rewards that prevent a tantrum one day can cause one the next if they are withdrawn. One Westchester mother survived a 90-minute drive to her mother-in-law's home with her autistic son by promising him a swim in the local pool and then French fries at McDonald's when they arrived. But, the pool she had been told would open at 10 was closed until noon, and McDonald's would not serve fries until 11.
The child, 7 years old and capable of speaking only a few words, tried to climb the fence at the pool in his fury. At the fast food restaurant, at 20 minutes to 11, he threw himself on the counter when no amount of pleading, or a $10 bribe, would get anyone to serve French fries ahead of schedule.
... A year ago, her goal was to teach Jami to take a shower, a requirement for her to spend three weeks at a sleepaway camp for children with special needs. Jami's speech is largely unintelligible, but she can read. So Ms. Saril posted a laminated instruction sheet in the shower, body part by body part, and Jami mastered it. Still, friends and relatives worried that Jami was too impaired to be away from home for so long.
Ms. Saril batted away their criticism. She had a hunch. And in snapshot after snapshot from Camp Ramapo in Rhinebeck, Jami is smiling. Ms. Saril, more inclined to irony than pathos, cannot look at the pictures without crying.
"It was mostly for Jami, and she had an amazing time," Ms. Saril said. "She swam in a lake, did the color war thing. She dressed herself, even if her socks were inside out. She ate new food.
"But there was a second reason I sent her. I did it for the rest of us. I'm on duty 24-7. I have a husband. I have another child. I have a business. I needed some time for all that. For three weeks, we got to be a normal family. We got to pretend."
This is a really remarkable article. I've excerpted a fair bit of it. In a relatively small amount of space the journalist managed to convey:
- men are mostly lazy scum sunny day fathers (I don't dare ask if I'm in any way an exception)
- the meltdowns, the extraordinary rigidity, the tiresome training, the ubiquitous routines
- the stress and social isolation, the complexity of disabilities that are emotional, behavioral, cognitive and invisible
- the odd range of ability -- a child with unintelligible speech who can nonetheless read
- the primacy of educators in the management of autism (vs. health care professionals)
- the history of operant conditioning and desensitization interventions (frankly, to me, the most effective interventions remind me a great deal of how we trained our doggie)
- the extraordinary resources required to apply these methods (so what happens to autistic children in families that lack those resources? Our ignorance is as vast as our research and funding are modest)
This is an article worth printing out and distributing to family and teachers. I think it's appropriate for all children who have difficulties with flexibility, environmental stimulation and variety, transitions, forming and maintaining friendships and explosive meltdowns -- whether or not they carry the ill-defined (and probably transitional pending functional PET scans) label of "autism".