Autism, as the experts are fond of saying, is a lifelong disability. A child who has moderate or severe autism will need a great deal of extra care throughout childhood and adolescence. But there is also the likelihood that he will also need guidance and supervision as an adult.
My son is autistic. He has the body and appetites of a teenager, but the mind of a little boy. He still reads Dr Seuss books and watches Caillou. Very soon he will face the task of transitioning from childhood into adulthood, but without the benefit of an adult understanding of the world.
Challenges for the Autistic Teen
Autistic teenagers face a lot of the same challenges that other teens do. Their bodies change. They grow tall and gangly, get pimples, start to really smell when they sweat. Their voices deepen. That one really threw my son! He loved to sing all the high-pitched female roles in songs from Disney movies like Mulan, and suddenly his voice would crack and he couldn’t reach the notes anymore! He talked in a falsetto for almost a year after his voice started to change!
But teens who have autism also face some unique struggles that can be pretty difficult to cope with:
- Autistic kids like my son are maturing sexually in body but their minds aren’t keeping up. So his hormones are creating an interest in things he can’t understand, and he still doesn’t really have the vocabulary to talk about it.
- He still has limitations with his fine motors skills and his ability to copy gestures. So he’s growing facial hair and will need to learn how to shave. But it will be difficult for him to hold a safety razor properly or to understand Daddy’s advice about not cutting himself when he shaves.
- Like any teenager, autistic kids want to enjoy some independence as they grow older. My son is fascinated with cars and got very excited when his older sister got her learner’s permit. He wants to know when he can drive, but his autism impacts on both his communication skills and his judgment. He still can’t walk to school unsupervised, and it’s only just this year when we finally got him to stop and look both ways before crossing the street. There’s a good chance he will never be mature enough to get a driver’s licence.
- In a couple of years, he will graduate high school, and he will need a job to keep him busy and make him feel productive. But his autism is severe enough that he won’t likely find a college program that can accommodate him. He’ll likely need to work in a sheltered workshop of sorts all his adult life.
Keeping Watch Over an Autistic Relative
In a short while, my son will be old enough to file for a disability pension. Before that happens, we will have to go through the process of taking control of his finances. He knows what money is and can do simple sums. But he is not ready to make a purchase at the grocery store alone yet, much less pay a rent or budget for monthly expenses.
We will probably always have to watch over him and keep him safe. His repertoire of living skills is growing all the time, but he still needs someone to cook for him. We have to help him bathe and wash his clothes. We have to take him places he likes to go, lest he wanders off or gets excited and walks into oncoming traffic. And although each of these things has the potential to improve, it could be years or even decades before he can do them completely unaided.
Autism will follow him and us for the rest of our lives. And because they have an autistic brother, it will follow my daughters too. Autism will be there when they bring home friends and boyfriends for the first time, and when they get married. It will be there when they get pregnant, and wonder whether any of their children will be born autistic too. Autism will be there when their children become old enough to notice that their uncle is different and start asking awkward questions.
Autism is a lifelong disability for the whole family, and not just for one person.