I love palm trees. We don’t have them in Indiana, but I’ve visited Florida – where they grow 50 to 70 feet high and straight as a light post.
I like to think that the grit God has developed in me as a parent of adult children with autism is similar to the strength of a palm tree. Some palm trees can withstand 145 mph winds without snapping. Well, I’m 50-something years old and I haven’t snapped.
Times of testing
That doesn’t mean I’m not tested at times when people are rude to my twin boys or misunderstand their limitations and interpret it as insubordination.
“I said shoes off. You can’t go through like that,” barked the TSA agent. Of course, he was likely tired of repeating himself a gazillion times a day.
“Sir, they have autism,” I explained. “They’ve never flown before.”
He softened his tone and nodded. Maybe it was the autism awareness shirts my 24-year-old sons wore, or the medical bracelets. More than likely it was the Mama Grizzly speaking up for the two confused adults standing before him. After all, a mama is a mama no matter how old her babies are. Especially if those adult children have autism.
Autism isn’t going away anytime soon. Currently, about one in 59 children have a diagnosis of autism spectrum disorder, and the numbers just keep growing. Since autism is a life-long disability, many parents of children on the spectrum must care for their adult kids at home after age 18, mainly because society can’t keep up with the staggering need of services. Some single mothers are living at the risk of their own safety with volatile adult children. (I know several of them personally.)
My boys have been blessed: Their father didn’t check out. He stuck around for all the good, bad and ugly of what we’ve been through. He’s the twins’ greatest friend and role model, and I’ve never feared for my safety the way some of my friends have.
A crisis is looming
Media portrayals have often painted a quaint picture of adults with autism, highlighting autistic savants with extraordinary skills and books written by high-functioning authors on the spectrum. Indeed, there are many great autism success stories. But while my twins are miracles themselves, they are also among the vast majority of people with autism in the United States who cannot care for or live by themselves. Each year 50,000 more people join their ranks. A crisis is not just looming for these families; it’s already here.
There are many adults with autism who cannot use the toilet by themselves, feed themselves or speak for themselves. Parents have been changing their diapers for decades in some cases, with very limited options for ongoing support – especially in rural areas.
Most families struggle economically, especially when one caregiver is required to be at home at all times. While other midlife couples are living as empty nesters, our food bills and clothing budget – basically everything we need to survive – remain enormous. And forget about spontaneity. It feels like I have to make elaborate arrangements just to meet a friend for coffee! (A lot of parents simply give up and live in isolation, cut off from family who don’t understand and friendships they never made.)
There are serious legal concerns, too. If a parent doesn’t have custody of adult children with autism who are unable to care for themselves, there is little they can do if their son or daughter comes upon some manipulative individuals. My friend’s daughter was talked into leaving home by one such couple and essentially used as a sexual slave. There was nothing my friend could do because she didn’t have custodial guardianship of her adult daughter. (If you have a child on the spectrum, seek out advice for legal guardianship before he or she turns 18. In fact, it’s best to start planning the process and saving for the court costs a few years in advance.)
How you can help
“But Karla,” you might ask, “What can I do to help?”
One of the first things you can do is pray for families living with autism. Then, let them know – not only that you are praying, but also that you care. Next, let them see that you care by offering your service.
For example, if you’re able, simply offer to sit with the child for an hour so that the caregiver can take a shower or run to the grocery store. Parents of children with autism have the same needs as other families: Prepare a meal for them. Offer to wash a car or mow the lawn. Get to know individuals with autism so that you can develop a real relationship with them and learn to enjoy their company. People with autism like having friends, too.
Finally, listen. Just listen. Let caregivers vent. Sometimes, just knowing that someone understands what you’re dealing with is a huge relief. Don’t try to fix anything and definitely don’t judge. You have no idea about the journey they are on. Do not offer advice. Besides, they’ve probably heard it and read it (and memorized it) already. Just listen and nod.
Sometimes that’s all I need: Just someone to hear me. Someone to tell, “I’m an autism mom. I’m tired. I’m stretched thin. But I’m blessed because I believe that God is always up to something good. All the time.”
Enduring the storms
Even on the hard days, I’m thankful for this journey because it’s taught me tolerance and love and a way of seeing things I’ve never seen before. It’s taught me that just because someone perceives something differently doesn’t make it wrong. It’s just different. And it’s made me strong – so strong that I can bend in the storm like a palm tree.
And still not break.