A version of this article first appeared in iancommunity.org.
What parent doesn’t watch their “tween” become a teen without a twinge of anxiety? Factor autism into the equation and parents may well worry about how the physical and hormonal changes of adolescence will affect their child on the spectrum.
How will teenage rebellion look in someone who already struggles with behavioral control? What will it be like traversing the social minefield of high school for someone with a social disability?
Many a teen boy has had to be convinced of the need for daily showers and shaving. How do you convince someone who has sensory problems to stand under water or drag a sharp razor across his face?
GROWING NUMBERS OF TEENS WITH ASD
Chantal Sicile-Kira says nobody told her what to expect when her son with autism, now 24, became a teenager. Jeremy Sicile-Kira was born when autism was considered to be relatively rare — just before the tide of diagnoses began rising in the 1990s. “Nobody ever told us anything about adolescence and autism,” she says.
Today, many more parents have children with autism who are entering or already in their teens.1 Ms. Sicile-Kira tries to educate them through her books, speeches and seminars on autism spectrum disorders (ASD).
One common complaint she hears from parents: their teen’s autism is getting worse. But that may be a misunderstanding, she says.
“The teens are not getting more noncompliant because their autism is getting worse. It’s because they’re teenagers,” says Sicile-Kira, author of Adolescents on the Autism Spectrum. Like all teens, they may want more independence. Parents can help: “If your child needs schedules, for example, give him more control over his schedule. That gives him a way to be ‘noncompliant’”— to have his own way sometimes.
Research into autism in the teen years and beyond is still in its infancy: “Very little is known about the course of ASD through adolescence and into young adulthood,” one study said.
Autism is a broad spectrum, and adolescence will affect each child differently. If recent studies are an indication, parents generally can expect some:
- Behavioral improvements across the spectrum. Adults with autism have less hyperactivity and irritability, and fewer repetitive behaviors (such as lining things up) and maladaptive (dysfunctional) behaviors, than children with autism.2,3,4
- Improvements in daily living skills — such as getting dressed, keeping track of cash and making a sandwich.5
Of course, adolescence brings special challenges. The teen years are a risk period for the onset of seizures in autism, although most teens do not develop epilepsy.6 Childhood sleep problems may persist into adolescence, when insomnia and daytime sleepiness become the biggest concerns.7,8 Anxiety is commonplace.9
Also, the gap in something called “executive functioning” widens between the people with autism and their peers during the teen years.10
WHAT IS EXECUTIVE FUNCTIONING?
“If you think of your brain as an orchestra, executive functioning is the conductor, making sure all the parts are working together and working properly,” explains neuropsychologist Michael Rosenthal of the Child Mind Institute. Rosenthal is an author of a new study on executive function problems in teens with ASD and intelligence quotients (IQs) of 70 or above.
People use executive skills when they make plans, keep track of time, remember past experiences and relate them to the present, change course if they hit a roadblock, ask for help, maintain self-control and work successfully in a group.11
Something as mundane as food shopping requires multiple executive skills, Rosenthal says.
“First you need initiation skills to get yourself off the couch. The next step is to plan and organize a list of the items you need to get. You need to think about how many meals you need to make and how much money you have in the bank. Let’s imagine the first thing on your list is pears, but when you go to the produce section, the pears are all bruised. You have to have the cognitive flexibility to say, ‘Instead of pears, I will buy apples.’ You need inhibition to keep from going to the candy aisle, and your working memory will help you keep track of the items you’ve purchased,” he explains.
Teens with autism mature at a slower pace in executive skills than typical teens, according to his research. They may have particular trouble with flexibility, organization, initiating activities and working memory.10 “In kids with autism spectrum disorder, cognitive flexibility is the standout problem for them and seems to remain a problem as they get older,” Rosenthal says.
FACING THE DEMANDS OF HIGH SCHOOL
Meanwhile, the demands on teens increase dramatically. By high school, students are expected to change classes hourly, keep track of books and assignments for each class, follow complex directions, complete multiphase projects and turn in homework on time.
Amy Keefer, a clinical psychologist at the Kennedy Krieger Institute in Baltimore, says schools and parents can help teens who struggle with planning, organization and other executive skills.
“Teens on the spectrum will require a greater level of external supports from family and the school,” Keefer says. These supports may take the form of frequent parent-school communication, teachers checking assignment books to make sure they’re filled out correctly and teachers helping students break down projects into smaller steps, with due dates for each step, she says.
Many elementary schools provide those types of organizational supports plus help with social skills, she says. However, educators often reduce or eliminate such help in middle or high school, when students are expected to be more self-sufficient.
“In general, as you move up the grades, the amount of support and scaffolding you get from teachers drops off,” Rosenthal confirms.
That can cause problems. “For most kids on the spectrum, they need those supports throughout their school careers,” Keefer says.
At home, teens may need continued help with homework and daily activities even though they desire more independence. So-called teen rebelliousness creates special problems for students who still need a lot of guidance and for parents who are used to providing it. “It’s hard for a lot of parents to let go, and it’s hard for a lot of parents to continue to be the ‘helper,’ because of the resistance they get from their child,” Keefer says. In those instances, the teen may benefit from working with a counselor or psychologist, she says.
PREPARING FOR PUBERTY
Tweens and teens on the spectrum may need more direction than their peers in other areas, especially understanding puberty and sexual development.
In Growing Up On the Spectrum, autism researcher Lynn Kern Koegel urges parents to begin teaching their children about puberty early, “so you can prepare your child before he or she gets unnecessarily alarmed over perfectly natural body changes.”12
Do not assume that children with ASD will understand how to apply the lessons of school health class to themselves, Keefer says. “Often I see young men and ladies who have a good understanding of the biological underpinnings of reproduction but no understanding of what that means to them as a person or how it relates to social and dating behavior, including how to maintain personal safety.”
Teens with ASD may not intuitively know what types of information and bodily activities should be private, Sicile-Kira says. For example, a teen girl may need to be told not to discuss menstruation at the lunch table.
GROOMING AND PERSONAL HYGIENE
Some teens may need reminders to shower and shave. They may not understand that grooming is important to social acceptance, or they may have little social motivation to smell and look clean. “They may be rejected because of poor personal hygiene but may not connect one to the other, or they may not have the skills to address the issue,” Keefer says.
Sicile-Kira recommends doing detective work to determine why your teen is shower-averse. Does he understand the importance and mechanics of good hygiene? Is the problem sensory? Suppose he hates the sensation of water pounding on his body from a showerhead. If that’s the case, she says, “give him a plastic cup to pour water on his head, so he has control over the flow of water.”
Even with good hygiene, adolescence can be a time of frustration and uncertainty for almost anyone. The social world — with its cliques and pecking order — becomes decidedly more complex during high school. Factor in dating, with its own set of unwritten rules, and students with ASD may feel adrift.
Problems with social and communication skills can leave them particularly vulnerable to bullying. IAN research shows that children with ASD are bullied at a much higher rate than their unaffected siblings, and that bullying spikes for them from fifth to eighth grades.13
FINDING A PLACE IN THE SOCIAL WORLD
Even if they escape bullying, many teens with ASD struggle with social isolation. A large national study of teens receiving special education services revealed that students with ASD were less likely to take part in social activities than adolescents with speech and language disorders, learning disabilities or intellectual disability.1
More than 40 percent of the teens with ASD never saw friends outside school. Half were never invited to take part in activities. For 54 percent, friends never called.1
A smaller study found that “social withdrawal worsened with age for a substantial proportion of youths” with ASD between ages 9 and 18, regardless of IQ.2
“Teens say actually the hardest part [of adolescence] is not having friends. People think they don’t want to have friends, but they do,” Sicile-Kira says.
Keefer says many teens and young adults with ASD want, at a minimum, to be accepted. “There is a desire to be accepted, to have people around you who are nice to you and with whom you can share your interests,” she says.
The special interests common to autism can be an escape from social interaction if a teen occupies himself primarily with his favorite topic. “But if used correctly, those special interests can be a way to connect with other people. An interest in gaming, for instance, is often a way for teenage boys to connect with one another,” Keefer says.
Parenting during the teen years can be difficult, but there are also rewards, Sicile-Kira says. “There are some years that are tough, but when your children’s personalities come out, it’s great,” she says.
Sicile-Kira continues to learn new things about her son, who has some verbal skills and types to communicate. He recently started painting and has sold some of his artwork. “You can never give up, because you have to be open to whatever opportunities present themselves,” she says.
- Shattuck, P.T., Orsmond, G.I., Wagner, M., & Cooper, B.P. (2011). Participation in social activities among adolescents with an autism spectrum disorder. PLoS One, 6(11), e27176. View abstract.
- Anderson, D.K., Maye, M.P., & Lord, C. (2011). Changes in maladaptive behaviors from midchildhood to young adulthood in autism spectrum disorder. American Journal of intellectual and developmental disability, 116(5), 381-397. View abstract.
- Chowdhury, M., Benson, B.A., & Hillier, A. (2010) Changes in restricted repetitive behaviors with age: a study of high-functioning adults with autism spectrum disorders. Research in autism spectrum disorders, 4(2), 210-216. View abstract.
- Shattuck, P.T., Seltzer, M.M., Greenberg, J.S., Orsmond, G.I., Bolt, D., Kring, S., Lounds, J., & Lord C. (2007). Change in autism symptoms and maladaptive behaviors in adolescents and adults with an autism spectrum disorder. Journal of autism and developmental disorders, 37(9), 1735-1747. View abstract.
- Smith, L.E., Maenner, M.J., & Seltzer, M.M. (2012). Developmental trajectories in adolescents and adults with autism: the case of daily living skills. Journal of the American Academy of Child and Adolescent Psychiatry, 51(6), 622-631. View abstract.
- Spence, S.J., & Schneider, M.T. (2009). The role of epilepsy and epileptiform EEGs in autism spectrum disorders. Pediatric research, 65(6), 599-606. View abstract.
- Goldman, S.E., Richdale, A.L., Clemons, T., & Malow, B.A. (2012). Parental sleep concerns in autism spectrum disorders: variations from childhood to adolescence. Journal of autism and developmental disorders, 42(4), 531-538. View abstract.
- Baker, E., Richdale, A., Short, M., & Gradisar, M. (2013). An investigation of sleep patterns in adolescents with high-functioning autism spectrum disorder compared with typically developing adolescents. Developmental Neurorehabilitation, 16(3), 155-165. View abstract.
- White, S. W., Ollendick, T., Albano, A., Oswald, D., Johnson, C., Southam-Gerow, M. A., Kim, I., & Scahill, L. (2013). Randomized controlled trial: Multimodal anxiety and social skill intervention for adolescents with autism spectrum disorder. Journal of autism and developmental disorders, 43(2), 382-394. View abstract.
- Rosenthal, M., Wallace, G.L., Lawson, R., Wills, M.C., Dixon, E., Yerys, B.E., & Kenworthy, L. (2013). Impairments in real-world executive function increase from childhood to adolescence in autism spectrum disorders. Neuropsychology, 27(1), 13-18. View abstract.
- National Center for Learning Disabilities Editorial Team. (n.d.). What is executive function? Retrieved from https//www.ncld.org.
- Koegel, L.K., & LaZebnik, C. (2009). Growing Up on the Spectrum. New York, NY: Penguin, 160.
- Anderson, C. (2012). IAN research report: bullying and children with ASD. Retrieved from https://www.iancommunity.org.