A new approach for adults with autism
With the focus on the record number of American children diagnosed with autism, a Temple University researchers have turned their attention to a neglected group — teenagers and adults with the disorder.
Born prior to federal mandates in the late ’80s and early ’90s for full and early intervention programs for children with autism, many in this group did not benefit from now-standard individualized and intensive treatments. With little use of or expertise with assistive technologies — such as language keyboards or computers — non-verbal teens and adults had few ways to communicate. And because people with autism tend to test very low on standard IQ tests, people did not presume they had intellect.
|Temple University occupational therapist Kristie Koenig, PhD., OTL/R, works with Paul Kotler, 18, a student of the Magnolia Demonstration School in Berwyn, Pa. Kotler, who is nonverbal and has autism, uses a computerized keyboard to communicate with Koenig.
|Photo by Kelly & Massa
But now, thanks to Kristie Koenig, PhD., OTL/R, and her colleague Moya Kinnealey, PhD., OTL/R, that bleak picture may be changing. In interviews with non-verbal teens and adults who have learned to communicate by typing, they realized that in their studies they had neglected the experts — those who had autism themselves.
“Once we break through the physical shell of autism, we begin to understand it from the ‘inside out’,” Koenig said. “When that happens, many behaviors associated with autism begin to make sense as the individual explains his/ or her experience.”
Koenig works to understand how sensory disorder issues — an inability to take in information from the senses and then to organize and interpret it, then make a motor response — makes it difficult for people with autism to adapt to their environment. Problems can range from an inability to screen out distracting noise to motor skill issues, such as not being able to sit on a swing and pump their legs at the same time.
When she realized that many of her observations about motor and sensory skills were confirmed in interviews with those affected by autism, she says, “We had to listen.”
Autism is a complex disorder that covers a wide range of behaviors, and is characterized by difficulty in communication and an inability to socialize. Across the broad spectrum of autism, it is estimated that anywhere from 30 to 100 percent have some form of sensory processing disorders.
The interviews reveal that despite the motor, sensory and communication barriers faced by the interviewees, inside they remain alert, intelligent and aware of their condition. The experience taught Koenig to always “presume intellect” in these individuals and to recognize their attempts to communicate this through a variety of behaviors.
Using this inside/out approach, Koenig finds that many of the stimming, or repetitive, behaviors of autism — which can connote mindless activity — may be efforts to self-soothe against overwhelming sensory input. For example, flapping arms may be a response to intense discomfort, while hands clapped over ears may be an attempt to block a “painful” sound.
Sensory disorders may help explain other behaviors, such as an autistic person’s inability to listen to a conversation and meet the speakers gaze at the same time. While it may appear rude, the experience of listening and looking may prove too intense. Or, as one interviewee typed: “I can either look at you or I can listen to you.”
While traditional approaches have worked to eradicate or “fix” these behaviors in adolescents and adults, Koenig recommends a “relationship-based” approach that acknowledges the behaviors as coping mechanisms, which, if arbitrarily removed, might be replaced by something more dangerous, such as head banging.
Instead, she suggests trying to adjust the environment to help affected individuals cope or to work on gradually desensitizing them to reduce the impact of the sensory overload. Her goal is to find universal design solutions, which improve the environment not only for those with sensory disorders, but for everyone.
“In a classroom, for example, you might replace fluorescent lights that emit a distracting ‘buzz’ with lamps,” she said. “This benefits not only the person with autism but everyone who uses the space.”
The interviews open a window to the motor barriers of autism. Participants describe being trapped inside a body they can’t “trust” to do what they want or that feels like “cement.” Many of these sensations arise from an inability to be able to plan out actions in the mind and carry them out in the body, which affects large and small motor skills.
“We were amazed by how articulate they were,” Koenig said.
A case in point is Paul Kotler, 18, a nonverbal student of the Magnolia Demonstration School in Berwyn, Pa. Kotler, who was interviewed in the study, began receiving intensive occupational therapy working on his sensory and motor systems beginning at age 12. Prior to this, he had traditional behavioral and educational programming. The occupational therapy work helped him to start typing about two years later, at 14.
At school, Paul uses a computerized keyboard to communicate with his teachers and fellow classmates. His mother, Melinda Kotler, runs the Magnolia Demonstration School.
The most difficult thing about being autistic? “Camouflages intellect” Paul types. When asked if he wants friends, Kotler types slowly, but poignantly: “Camaraderie long awaited.” He is equally direct when asked what people should know about him: “Autism,” he types, “Disguise me.” What he would most like to do is to, “Teach others about autism.”
Koenig emphasizes that while Paul and the other teens and adults who participated in the study are not cured, the ability to communicate brings their treatments to a new level.
“Being able to communicate changes the guesswork in designing intervention goals as the person can tell us what their goals are,” Koenig said. “Communication enables us to engage them on their intellectual level and partner with them to achieve their goals.”
In the end, she says, working with an autistic teen or adult must be based on trust and grounded in a relationship that understands the sensory and motor challenges.
“We need to trust the autistic person to let us know: ‘How is this for you?’”
- By Ilene Rush
For Temple Health Sciences PR