When my son Jeremy was 13, he began to empty all the bookshelves in the house. At that time, he was basically non-verbal and had poor communication skills, so he couldn’t tell us why he was doing this. We put together a behavior plan, but it didn’t help; neither did medication. What he learned was to empty the bookshelves when we weren’t looking. We boxed up all the books and put them in the garage, leaving one bookshelf in his bedroom. He would empty it and move the books around constantly. Then one day, after about a year, he just stopped. I never figured out what that behavior was all about, but we were able to bring our books and bookcases back into the house.
Parents have written to me off and on asking for advice when their boy or girl on the spectrum reaches puberty, but recently I’ve been hearing from many more of them, and that’s because there are more teenagers with autism than ever before. About one million people in the U.S. are diagnosed with an autism spectrum disorders, and 80 percent of them are under age 22, according to the Organization for Autism Research. In California alone, it’s estimated that by 2018, the population of adults with autism will triple to over 19,000—and that means many children with autism are now entering the teen years.
All children reaching puberty go through many changes, whether they’re on or off the spectrum. They become more non-compliant as they mature physically and emotionally. They begin to struggle with their changing bodies, become moody, and wonder about their sexuality. For teens with autism it’s worse, because they don’t pick up by osmosis what other teens do. They don’t know that their body is supposed to change, and most of them don’t like change. Teens with autism struggle because they may be changing physically, but emotionally they aren’t maturing as quickly as their neurotypical classmates. Adolescence is a challenge for any parent, and the areas of concern are the same, but parents need to take a different approach for their budding teen with autism. Here’s what you need to know for raising adolescents on the autism spectrum, no matter their ability level.
Why I acted the way I did when I hit puberty
I had a difficult time when I came into the teen years. I tried to tell my mom (nicely!) but I had no way to communicate this. So I tried to tell her by redecorating the house. It lasted about a year, during which I frequently pulled down all the books off the bookshelves because I was trying to tell her that I wasn’t understanding the great differences felt all over my body. Usually my nice mom understood the things I did, but these great trials I put her through frankly did not make her understand really the great difficulties I was going through.
One day my body felt better again, but it took some getting used to. I remember nicely my parents moved all the book cases and books into the garage out of my reach. Then I tried to find them, but couldn’t so I just rearranged my room. It was really frustrating that my mom did not understand.
1. Teenagers like to make their own choices…which usually aren’t the same as yours
Often, parents are concerned because they perceive that their child on the spectrum is becoming more “non-compliant.” That’s just normal teenage behavior, and has nothing to do with autism. After a certain age, teenagers just don’t want to do what their parents want to do. Our neurotypical teenagers remind us constantly as they are maturing that they are getting older and that we need to give them more freedom—for example, our neurotypical daughter, Rebecca started asking to go to rock concerts when she was 12. When she was that young, she was taken to the concerts with friends and under parental supervision. When she got to be 15 she started asking if she could be dropped off with her friends and no adult; then, at age 18, she wanted to drive herself to the concerts. She’d argue her case with us and convince us at each step that she was more mature and more responsible, so we widened the parameters.
All teens want more control over their lives, but the problem is that most children or teens on the spectrum don’t usually negotiate new rules of behavior with their parents. Then, parents start seeing non-compliant behavior as the teen tries to assert himself. To avoid this, parents need to give their teen more choice and control over his/her schedule. If there are chores to be done, let him pick which one he will do. Give him more responsibility by letting him choose the dinner menu, and have him help with planning the meal and shopping for the ingredients. Giving your teen more control by enlarging the parameters, finding ways to provide them with opportunities to make their own choices, and giving them more responsibility, will lessen their need to be non-compliant.
2. Not all teenagers care about smelling good!
Neurotypical teenagers who are social butterflies understand the relationship between smelling clean, looking good, and people wanting to hang out with you. Most children and teens on the spectrum aren’t all that social (even if many desire friends), and don’t naturally realize the importance of good hygiene. Besides telling them about the social reasons, parents will have to explain the health reasons for staying clean through the use of social stories tailored to their child’s ability level.
Many of our ASD teens have challenges in the self-care routine, and parents have to analyze where they’re having problems by doing a task analysis and looking at the steps where the teen is struggling. Then they have to figure out why they are having a problem with that step. For example, Steve’s parents told me that Steve could complete all the steps of taking a shower on his own, but never washed his hair. They had to figure out if he was forgetting to do so (requiring a visual reminder) or if he didn’t like the shampoo (change the product), or another reason. Turns out he didn’t like the feel of the shower head water spray on his head—it hurt him. They gave him other options for wetting and rinsing his hair (using a big sponge, pouring water from a small plastic jug). On another note, having your teen help shop for the soap and hygiene products he likes the smell and feel of is a good way to get him more interested in using them.
3. Teenagers learn self-esteem via how they are treated at home and at school
When I interviewed adults for my Autism Life Skills book, having good self-esteem was one of those areas they cited as being important to their success as an adult. Children develop self-esteem based on how they are treated, and what they hear people saying about them. It’s important to remember that those who are non-verbal are listening to us, even if they can’t speak. Find out what messages they are hearing from those around them by keeping a tape recorder running in your house for a few hours a day over the course of a week. Are they hearing more negatives than positives? Our teens on the spectrum need to hear about their strengths as well as their deficits, and they need to know that we have high expectations of them, but still love them for who they are—including the autism. Another way to promote good self-esteem is to provide role models of people who have overcome challenges in the community.
4. Teenagers don’t develop good organizational skills through osmosis
Most children reaching fifth or sixth grade learn that planning and organizing to get their work done is more complicated, and that it intensifies during the upper years. They may be given daily assignments, as well as more long-term projects they need to work on. ASD students tend to have poor executive functions, including planning, organizing, strategizing, paying attention to and remembering details, and managing time and space, including organizational skills. Parents can help their teens in this area by teaching them organizational strategies, such as using color-coding to organize subject matters, school notes and papers, and timelines on calendars. Using wall calendars and personal technology, and practicing with the teen on how to incorporate them as reminders, can be helpful. Some teens may have challenges when it comes to focusing on the important parts of an assignment, and may need guidance on where to focus. For example, a teen may spend two hours “working” on the title page of a paper to decide which font to use, instead of actually writing the report.
5. Moodiness and raging hormones are part of growing as a teenager
A parent may think a child’s autism is getting worse, when in actuality it’s their hormones that are fluctuating. Try to remember what it felt like for you going through puberty, and then imagine you’re a teenager with autism who doesn’t like change—but your body is changing, and you’re feeling different but no one has explained to you what’s going on. Parents can help their children by explaining it all by using social stories and books about the changing body. Make a picture book showing photos of trusted adults at various ages: as a baby, young child, young teen, older teen, young adult and so on, so they understand that these body changes happen to everyone and are a part of life.
6. Self-regulation is a needed life skill not practiced by teenagers
Readers who have experience with typical teenagers will agree that this is an area they are still learning about. Eventually, teen hormones settle down and they become more self-aware and realize they need to control their reactions to everyday life. However, teens on the spectrum have a difficult time with self-awareness. They need to be taught to identify what they are feeling before they reach the tipping point of sensory or emotional overload. Then, they must be taught coping strategies to stay regulated.
7. Orderliness is a foreign concept to most teenagers
Usually, any teenager’s room looks like it has just been hit by a tornado, but orderliness is important because it makes it easier to find things and helps a person focus. Some teens on the spectrum who’ve always lined up their toys and other objects may continue to apply order in their bedroom. Others will need to be specifically taught what “clean up your room” means (for example, dirty clothes picked up and put in the hamper, books put back on the shelves). It’s helpful to ensure that each object has a place so the teen can find it again. Color-coding may be helpful here as well.
8. Masturbation is normal teenage activity
Many children and teens with autism don’t naturally have the notion of “private” and “public” and that some behaviors are only done in private. I discovered when doing research for my book, Adolescents on the Autism Spectrum, that this is a challenge for many. If your teenager is showing tendencies of wanting to masturbate at school or in public, he/she needs to be told that that is a behavior that takes place in private at home. At home, the teen needs to have his “private” place (his bedroom) where he is redirected if he is engaging in this behavior. It’s very helpful as well to ensure your child is getting plenty of exercise—that helps in lessoning the need.
9. Learning about sex from trusted adults (parents) is necessary
Even if your teen isn’t interested in sex, he/she needs to understand what sex is. In high school, there’s a lot of talk among peers about dating and having sex. Teens with autism are at risk for getting abused by others if they don’t understand what constitutes a sex act, and what is appropriate and inappropriate touching by other people. The hard-and-fast basic rule to teach them is that no one should touch them and they should touch no one on the body parts normally covered by a bathing suit, without permission. Then, you need to explain what constitutes a sex act and add your own personal and religious guidelines. Children who are fully included in school will be attending health classes where they will learn about sex and related topics, but you’ll still need to go over the information to ensure that they have understood how it relates to them pe
Surviving the teen years isn’t easy, whether your child is off or on the spectrum, but remember that your child’s autism isn’t getting worse—he’s becoming a teenager. Autism on its own is difficult: Add adolescence, and it’s a volatile mix. But by realizing what aspects are “teenagerisms” by nature and what is autism, using some of the strategies listed above adapted to their ability level, you will survive!
Find out more
- Autism College Free library and webinars, plus online course
on adolescent issues, and coaching for parents of teens,
- Spectrum Mentor Brian King, Relationship Coaching,
- Autism Speaks Transition Tool Kit,
- Chantal Sicile-Kira Author’s website,
with many articles about adolescent issues,
3 Books To Help You And Your Teen
- Adolescents on the Autism Spectrum:
A Parent’s Guide to the Cognitive,
Social, Physical, and Transition Needs
of Teenagers with Autism Spectrum Disorders by Chantal Sicile-Kira
- Autism Life Skills: From Communication
and Safety to Self Esteem and More:
10 Essential Abilities Every Child Deserves and Needs to Learn by Chantal Sicile-Kira
- Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People with Autism by Mary Wrobel