Trudy is 16 and attends the local high school. Her mother tells me she’s always been an affectionate, optimistic girl with a quick smile and a big heart. But lately she’s been sad more often than happy. Lately, she has neglected her appearance, refused to do chores, and insisted on staying home from school and staying in bed. She doesn’t even want to watch her favorite videos. What could be wrong? Oh – one more thing: Trudy has Down Syndrome.
First things first: When there’s a significant change in anyone’s behavior, it’s important to make sure there is nothing medically wrong. Trudy’s mother has already taken her to a doctor and been reassured that Trudy is physically fine. Her labs came back normal. She doesn’t have the flu that’s been going around. Her heart (repaired when she was only 6 weeks old) is beating strong. So that’s not it.
What we’re probably seeing, then, is the emergence of some kind of psychological distress.
Sadly, it’s common. While about 20 percent of American teenagers between the ages of 13 to 18 are affected by some type of mental disorder to an extent that they have difficulty functioning, teens with intellectual disability are more than twice as likely to develop a mental illness. Double!
The reason is a convergence of more traumatic experiences with less of the inner resources needed to handle them.
Life for teens with an intellectual disability is hard.
My colleague, Daniel Tomasulo, suggests that people with intellectual disability (ID) suffer both “big T” traumas and “little t” traumas. “Big T” includes what you’d expect: such events as car accidents, house fires, rape, bullying, and violence. But “little t” might surprise you. People with intellectual disability depend on a certain amount of predictability and stability in their lives to manage. A typical teen might be annoyed at forgetting her lunch or homework. She might welcome having a substitute teacher for art class or a change in schedule because a special speaker came to the school. But for kids with intellectual disability, such changes are scary. Without the external structure of predictability, they lose their bearings. Unless someone quickly helps them understand what’s going on, anxiety often overtakes them.
For a teen like Trudy who has mild ID, just knowing and coming to terms with the fact that she has Down Syndrome is in itself “little t” traumatizing. Having entered adolescence, she has come to understand that she isn’t like everyone else at school. She desperately wants the things that she sees her peers having: a boyfriend, a driver’s license, independence. She watches the same videos, movies, and TV shows as her contemporaries. Few of them include people like herself. When she looks around at school, she doesn’t see many people like her there either. Like every teen, she hates feeling different. She especially hates feeling alone in her difference. It’s no surprise, then, that she might go through periods of depression and anger.
One of the most important factors that helps a typical teen cope is having loyal friends. Kids like Trudy often don’t have any. Even when they have some friends among their typical classmates, they are often confused by peer behavior. The kid who befriends her in class may ignore her in the lunchroom out of fear of peer judgment. Often the Trudys in a school are the victims of teasing, even bullying. At school, then, their reliable support system often is only some adults. A couple of paraprofessionals and teachers who care isn’t the same as a circle of true friends. Life at school can be pretty lonely.
We can’t keep these kids in a bubble. It’s a disservice to them to deprive them of opportunities to get educated and to learn to cope in the social world. But how do we both help them participate in usual teen life and yet protect?
Supporting Those with an Intellectual Disability
- Recognize the problem. It’s critical that the adults in the lives of teens with disabilities recognize the problem. “Little t” traumas are real. Teens like Trudy are usually not overreacting, just seeking attention, or acting out when they are derailed by changes, even changes that the rest of the world might find minimal, laughable, or positive. Change, even positive change, is hard for them to cope with.
- Keep the external structure as stable as possible. Because they lack sufficient internal coping skills, external structure is what keeps these kids feeling safe and secure. Schedule changes, change in the setup of a classroom, the appearance of a substitute teacher, etc. are destabilizing. When changes are necessary or inevitable, it’s essential to provide them with extra support. Transitions need to be as gradual and gentle as possible.
- Explain, explain. Explain in language she can understand. To the extent it is possible, Trudy needs to be given simple, clear explanations for what is happening and what is expected of her. Support people need to remember that she is quite literal in her use of language. The metaphors and figures of speech that we all often use as a natural part of our communication will only confuse her.
- Help her understand the difference between goodnatured comments and bullying. Make sure she knows that she doesn’t have to put up with it if other kids are mean. Help her practice going to an identified adult if she is scared or confused or upset by the words or actions of her classmates.
- Build a support system. Like all teens, Trudy needs friends and advocates at school. Help her join organizations where she can be a successful member. Help other kids get to know her so that they can see the person, not the disability.
- Consider referring her for counseling. Many local clinics offer social skills groups and specialized counseling that can help Trudy learn and practice interpersonal and coping skills. Counseling can teach her methods for relaxing herself and ways to remind herself that she is okay even if she is a little upset. She can be taught how to ask for help so she doesn’t have to act out her distress.
Adolescence is hard on everyone but it can be traumatizing for teens with ID. With some extra understanding and practical supports, they can be helped to not only survive, but also to thrive during the teen years.
Photo courtesy of Wikimedia Commons.