By Sanjay Shah
A recent report by Autism Speaks, an American autism awareness organisation, revealed that as many as one in 45 U.S. children are affected by autism. That’s millions of children.
In the UAE, my adopted home country, one in 100 children have autism—thousands upon thousands of individual children, including one of my own. However, many suspect that the rate of incidence is far higher—on par with the U.S., where awareness of autism is higher among the general population.
Every child with autism, or ASD, is unique. But parents of children with autism face shared challenges that parents with non-ASD kids are unfamiliar with.
You’ve no doubt reviewed (and reviewed, and reviewed) the various tips for parenting a child with autism. I know my wife and I have. In particular, we’ve found these eight things to be very helpful.
Accept the Reality of Your Child’s Condition
In an older blog post, I wrote: “It took me and my wife quite some time to come to grips with the reality that our third, and youngest, child will never be like us, or our two older children.” I was referring, of course, to Nikhil, who was diagnosed with autism as a toddler.
I added: “Such acceptance is key. Only then can healing begin. Only then can we learn to deal with our emotions, and with society.”
Those words ring even truer today than when I wrote them. Acceptance may be the last stage of grief, but it’s a critical first step for parents facing an autism diagnosis. It’s important not to see the process that leads up to said acceptance as grieving, either. It’s very, very different—and far more hopeful.
Do What You Can To Support Research
After Nikhil received his autism diagnosis, I became painfully aware that I wasn’t doing enough to support autism research and treatment. In my own backyard, I saw countless families disadvantaged by unfortunate health care rules that exclude autism treatment from insurance-funded care.
I started by putting some of my own money toward autism research, but it soon became clear that this wouldn’t be enough. So I founded Autism Rocks, a charity that merges my two passions: music and autism research. Not everyone can found a charity, but I encourage every parent raising a child with autism to give to worthy research organisations as they’re able.
Seek Comfort and Support from Your Peers
You can’t do this alone. Seek out peer support groups in your area, attend meetings regularly, and welcome new parents into the fold as they seek answers to their own children’s conditions. As you gain more experience and insight into what it’s like to raise a child with ASD, share it with your peer group members. They’ll be eternally grateful—just as you no doubt were when you began seeking answers to your own questions.
Work With a Speech Therapist
Our Nikhil isn’t completely nonverbal, but he’s also not much of a talker. What progress he’s made has come largely at the hands of a team of talented speech therapists. He’s now able to say our names and a few other key words, greatly broadening our ability to communicate with him. If your child is nonverbal or nearly so, I’d strongly recommend working with a speech therapist.
Respect Boundaries and Tolerance for Public Situations
The hard truth is that your child will never be completely comfortable in public situations. While you can do much to address their reticence, trying to force them out of their element is a losing battle. Create a “trigger checklist”: loud noises, high ambient noise levels, crowds, bright lights, strong smells and so on. Avoid public situations with such triggers if possible, or introduce your child to them slowly if not.
Don’t Keep It All Inside
Children with autism are different than their non-ASD peers. But that doesn’t mean their psychology is completely alien. No child wants to be kept under wraps or seen as a social and economic liability.
The more you share your story—and your child’s—the more your colleagues, extended family members and fellow parents will come to see your experience as just one more “normal” variation in the endless tableau of human life. Once my wife and I began sharing our story with others, it was as if a weight had lifted from our shoulders. We poured that freedom and energy into Nikhil’s care—and, though he can’t tell us for sure, we suspect he’s happier for it.
Keep to a Routine (And Write Down Your Schedule)
Children with ASD tend to thrive in routinised, scheduled environments. Write down your child’s daily schedule and stick to it whenever possible, introducing changes slowly.
Establish Safety Zones at Home
If there’s one thing I’ve learned since Nikhil’s diagnosis, it’s that tantrums and outbursts are inevitable. The question is thus not how to prevent them, but how to mitigate their negative effects and re-centre the child’s equilibrium.
My wife and I are big proponents of “safety zones” within the home—places where Nikhil can recover from painful stimuli in comfortable, familiar surroundings. “Safety zones” are quiet, unstimulating environments with familiar objects and soothing decor. For ideas on building the ideal safety zone for your kid, talk to your behavioural psychologist.