Interactive Autism Network at Kennedy Krieger Institute
Date Published: April 10, 2014
This is the second in a series examining the research and reality of the transition to adulthood, with advice from experts who have studied the process and young adults who have lived it. Other articles featured in this archive include part 1) Coming of Age: The Transition to Adulthood,
With a broken alarm clock, Zosia Zaks feared oversleeping for an 8:30 a.m. college class. Who wouldn't? But his solution was anything but typical; he decided to sleep in his classroom to make sure he wasn't late. As someone with Asperger's Syndrome, he lacked a so-called adaptive skill – in this case, performing the steps needed to replace a clock battery – that makes adult life easier.
Mr. Zaks, now a Certified Rehabilitation Counselor, and other experts say adaptive skills, or skills of daily living, need to be taught explicitly to people on the autism spectrum. Taking a shower, brushing your teeth, riding a bus, crossing the street, shopping or preparing a meal: all of these are adaptive skills.
Such skills are considered essential to adulthood. "For example, difficulties with everyday activities such as bathing, cooking, cleaning, and handling money could drastically reduce an individual's chance of achieving independence in adulthood," according to researchers.1
Sometimes, parents and teachers of children with autism may focus more attention on teaching academic and behavior management skills than on daily living skills. Some may assume that daily living skills are less important. Or they may believe that a person with average intelligence will learn those skills on his own.
In fact, intelligence may have nothing to do with it. Problems with daily living skills "may be especially prominent in those with higher cognitive abilities" and autism, according to one study.1
Average IQ But Low Adaptive Skills?
That study, led by Amie W. Duncan Ph.D., found "surprising" deficits in daily living skills in teens with autism who have average and above average intelligence. The study included 417 adolescents with ASD in the Simons Simplex Collection research project. Half of them had daily living skills that were "significantly below" expectations for someone of their age and IQ.
About a fourth of the group scored in the low range of adaptive functioning, defined as a score below 70. In other words, their adaptive skills were at the level of someone with mild to moderate intellectual disability. "It's really shocking that these are really high-functioning adolescents and their adaptive skills are that low," said Dr. Duncan, a psychologist at Cincinnati Children's Hospital Medical Center.
Daily living skills include personal hygiene and self-care (taking medicine, bandaging a cut), housekeeping, food preparation, and getting around the community, she said. Her study warned that "addressing these skills prior to the transition to adulthood is crucial if we expect young adults to have the necessary skills to live independently."1
Daily living skills are a subset of adaptive behavior, which includes communication, social and relationship skills that are likely to be harder for someone on the spectrum. Her research team focused on daily living skills because they are less likely to be affected by the core deficits of autism, Dr. Duncan said.
The Complexity of Functional Skills
Dr. Peter Gerhardt, a behavior expert, helps students with autism learn daily living skills, sometimes called "functional skills." Functional skills have taken on a negative connotation, he said during a recent online presentation. When you talk to parents about teaching functional skills, they may view it as "giving up on a kid."
However, those skills can be more complex than inferential calculus, Dr. Gerhardt said. For example, learning how to cross a busy New York City street safely is a complex task involving visual memory, decision-making, and motor skills, he said. It's also a skill that allows someone to get to work so he can use his academic skills.
Parents can help by giving children simple chores to do beginning at a young age, said Ernst O. VanBergeijk, Ph.D., M.S.W., associate dean and executive director of the Vocational Independence Program at New York Institute of Technology. For example, a small child can learn to put dirty clothes in a hamper. As he gets older, he can learn to separate light and dark clothes into two piles. Later still, he can put those clothes in the washer, and eventually he will set the washer controls himself to do the laundry, he said.
Shakespeare and Showering: Skills for High School
What we find is that with more nuanced and sophisticated skills, students have to be taught very explicitly and sequentially how to perform the skill.
Tom Hays Ph.D., educational director of a private high school, said parents are surprised when he says that adaptive skills are more important than some basic high school information, such as Shakespeare or the Krebs Cycle. Dr. Hays works at Franklin Academy, a day and boarding school for students with autism spectrum disorder and nonverbal learning disability school in East Haddam, Conn. Franklin includes instruction in adaptive and social skills, along with the typical college preparatory courses.
"We teach the skills you have to have to get along with others, take care of yourself, and self-advocacy," Dr. Hays said. Instruction may range from daily living skills, such as personal hygiene, to more complex dating and relationship skills, he said.
"I have kids with a 145 IQ who walk into my classroom, and they stink," he said. They may think taking a shower means standing under a stream of water for a few seconds and nothing more, he said. Fortunately, Franklin has a curriculum that teaches how they should bathe by breaking it down into concrete steps, such as how to use soap and how long to stand under the water.
"For our population, you have to do really explicit teaching," Dr. Hays said. One cannot assume that children on the spectrum "will pick up a skill by osmosis or will be able to imitate the skill after watching someone once. What we find is that with more nuanced and sophisticated skills, students have to be taught very explicitly and sequentially how to perform the skill."
Franklin even includes instruction on the complexities of social and relationship skills. "Dating is a big issue for our kids. They are clueless when it comes to dating: What does it mean to be in a relationship? What are the norms or conventions in terms of social expectations? We have to explicitly teach those skills."
Teens With ASD Need to Practice Outside of Class
I call that technique, 'living out loud,' and it should start when kids are very young.
Frequently, schools do not talk about adaptive skills until age 12 or later, Dr. Gerhardt said. And teens are not given enough opportunities to practice those skills in context, he said. For example, the best place to learn how to order a meal is in a restaurant, not a classroom.
Students with ASD are given far more chances to practice academic skills than adaptive ones, he said. For example, a five year-old may get 1,000 chances in a week to learn the names of the colors in a crayon box. When he's 15, however, he may get only one outing every Friday to a fast-food restaurant to learn how to order lunch. "If he goes once a week, it will take 15 years to give him 1,000 instructional opportunities, and the gap between going out one Friday and the next Friday is too long," Dr. Gerhardt said.
Families can help by providing extra opportunities for their children to practice daily living skills, Dr. VanBergeijk said. "You can teach a student in high school to do his laundry, but if he goes home, and mom or dad does his laundry, where's the practice he needs?"
Even if a teen seems to have mastered an adaptive skill, he may falter when a problem arises, said Mr. Zaks, program supervisor at the Hussman Center for Adults with Autism in Towson, Md.
In his case, he said, he knew how to shop, how to change a clock battery, and how to use money. But when his clock battery stopped working in college, he said, he could not "deploy those skills," which involved stringing together those different tasks. First, he needed to find time in his schedule to shop, get to a store, remember to bring money, and buy the battery. "There are so many nuances that go into this package of decisions and actions," he said.
He encourages parents to spell out those nuances to their children. To explain the cues and skills for shopping, for example, "You would say to your child, "I need new socks. My socks are worn out. Let's look at my schedule. On Friday morning before work I can go to the store to buy socks. I will need to bring my ATM card to the store."
"I call that technique, 'living out loud,' and it should start when kids are very young."
What You May Not Learn in High School
There are certain skills that these kids are not given through the high school, and it's difficult to transition from high school to independent living with this huge section of training missing.
Jennifer Cuff understands the need to teach, and provide opportunities for practicing, adaptive skills. She is both the mother of a daughter with Asperger's Syndrome, and also an adult service coordinator for a disability-services agency in Coeur d'Alene, Idaho.
"There are certain skills that these kids are not given through the high school, and it's difficult to transition from high school to independent living with this huge section of training missing," said Mrs. Cuff, a member of the Simons Simplex Collection autism research project.
Like many parents, she taught her daughter, Elizabeth, 20, skills such as clipping coupons, shopping, preparing meals, taking the bus to work, and taking care of the family cat. She wanted to give her daughter a chance to practice those skills without constant supervision. So she left Liz home alone for a week while the rest of the family moved into a recreational vehicle parked just 15 minutes away. Liz's grandmother lives around the corner, so a relative could reach her quickly if a problem arose. But none did. Mrs. Cuff checked on Liz during the week, and she was fine.
Ultimately, when one assesses the so-called "functioning level" of a person with autism, his or her adaptive skills may be far more important than his academic achievements. Dr. Gerhardt said he has had clients with above average IQs who "spend all day in their parents' basements playing video games," don't bathe, and don't interact with others. He also has had clients with intellectual disability who have jobs in the community. "In that scenario, the guy with the lower IQ is the higher functioning guy," he said.
That is why he emphasizes the importance of teaching adaptive skills to everyone with ASD.
IAN's Transition to Adulthood Series:
- Duncan, A.W. & Bishop, S.L. (2013) Understanding the gap between cognitive abilities and daily living skills in adolescents with autism spectrum disorders with average intelligence. Autism. Epub 2013 Nov 25. View abstract.