Autistic Kids Grow Up To Be Autistic Adults
Autism is mostly thought of in terms of children, and it’s certainly important for autistic kids to get the attention and interventions that will help them function at their best in the world. But in all the hype about early interventions and IEPs and therapies, people forget that autistic kids grow up to be autistic adults.
We don’t stop being autistic just because we grow up. Our brains don’t suddenly re-wire themselves into a neurotypical configuration when we turn 18, or 21, or 35. Therefore, it’s not enough to use therapies and interventions to ensure that an autistic child can be mainstreamed into a class of average students. It’s not even enough to get them to go to college. Our lives go on after that, and we continue into adult life with all the same challenges and sensitivities we had as children, even if we may have learned to work around them.
As adults, we want the same things NTs want. We want to work, pay our own bills, and live independently. We want to have friends and romantic relationships. Some of us want to be professionals, or performers, or parents. Some of us want to teach, or travel, or try hang gliding. And for many of us, there’s no reason we shouldn’t be able to do all those things, given the right supports. But those supports are often lacking once we reach adulthood.
Adult Services Aren’t Guaranteed
At age 22, autistic adults lose whatever services they’ve had under the Individuals with Disabilities Education Act (IDEA). Theoretically, at that age, they would transition from school-based services to adult services. But state services for adults are uneven at best, and nonexistent at worst. In many cases, only truly disabled adults qualify for services, without so much as vocational counseling available to anyone capable of holding a job.
For severely disabled autistic adults, that means their parents may have to renegotiate housing, find caregivers and day programs, and hope that they can find ways to pay for private programs because public services either aren’t available or aren’t sufficient. On the other end of the spectrum, it means that we lose access to therapists, social skills training, and other supports that helped us get through school, and we’re abandoned to make our way in “the real world” on our own.
We’re Not Well Equipped for Adult Life
Even for those of us without any real cognitive impairment, so many aspects of adult life are difficult. We’re expected to make time for working, keeping house, and socializing despite the fact that most of us struggle with ADHD and executive function issues that make time management and planning a huge stumbling block. If we’re honest, many of us probably don’t even understand everything that’s involved in running a home, at least not till we’ve been at it for several years. Nobody teaches us how to handle money, but we’re expected to pay bills and feed ourselves without going into debt.
At work, we have to manage relationships with our coworkers when we’ve probably never learned appropriate boundaries in working relationships. We may not fully grasp what kind of clothing is work-appropriate without explanation. And throughout the workday, we must tolerate fluorescent lights, noisy heaters or A/C units, and other sensory distractions while keeping our stimming to a minimum so as not to attract attention to ourselves. There are so many potential pitfalls that we may not even see on our own.
Preparation is Key
The tragedy of this is that we can be prepared for adult life if parents and therapists would make the effort. It takes just the same things you would do for an NT child, with a little extra patience. Let us help you make the grocery list and take us shopping with you. Teach us to sort laundry and walk us through washing, drying, and folding. Give us chores and an allowance, let us learn about working to earn money of our own. In short – don’t coddle us too much! Don’t lower your expectations so much that we never learn to do anything for ourselves, regardless of where we are on the spectrum.
Parents of autistic children, this is my plea to you: remember that your children will one day be adults. Do everything you can to help them become as self-sufficient as possible. If they’re profoundly affected, teach them as many life skills as you can, and save up for their transition just as you would for college. If they’re less impaired, put them in a Home Ec class or start teaching them chores and money management early. Many of us can learn all this on our own, through experience, but it’s a long and painful process that may take us from age 18 until our 30s or 40s. A little extra teaching early on can help us to take care of ourselves and make adult life so much easier on us.
What were your biggest struggles in learning to be an adult? What do you still struggle with? Is there one big thing you wish someone had taught you before you moved out on your own?