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Autism is Hard; That’s Why We Do This Together

This article was contributed by Amy Perry, an ASNC Autism Resource Specialist and mom to a daughter with autism.

SONY DSCWhenever I see the movie “Mary Poppins,” I smile at one of the film’s early scenes in which the next door neighbor fires his cannon every day. Everyone in the house automatically anticipates this temporary disruption by manning their “posts” to catch falling breakables and straighten the pictures on the walls. While a blast that shakes the whole house would be a disaster in most residences, it is just routine maintenance and survival in the Banks household. This scenario reminds me of what it’s like to live with autism.

In the wake of Autism Awareness Month, I find myself wondering whether the general public is actually aware of how hard it can be to have a child with autism. Sometimes autism is hard in ways that nobody talks about: like walking through the produce section of the grocery store with my 17-year-old daughter, praying she doesn’t take a bite out of a random piece of fruit or sniff the wrong stranger. At home, we keep the refrigerator locked because my daughter will drink a bottle of BBQ sauce if given the chance. We keep extra rolls of toilet paper hidden, because if we don’t, we risk them all ending up in the toilet at once. It’s fine to have dishes, cooking utensils, or even junk mail on the kitchen counter, but for reasons I will never understand, it is an unforgivable offense to leave out salt shakers or seasonings. (That’s my daughter’s rule, not mine.) Our house has adapted to these “quirks” of autism, and I seldom think about them until I’m at an autism-less house.

Autism presents challenges on several levels. There are the day-to-day survival tricks; we adapt and modify our behaviors or our environment within our own family such as never, ever running out of applesauce or having a copy of “Barney’s ABCs” for every DVD player in the house. There’s the bigger picture of dealing with autism within our extended network of family and friends. Have you ever had a well-meaning friend or relative ask “How’s _____ doing?” and your mental response is “you wouldn’t believe me if I told you what I had to clean up last night” or “my life is somewhere between ‘Apocalypse Now’ and ‘Madagascar.’” Then there’s the big question: “What’s going to happen in the long run? Does autism grow up?,” a question so scary I didn’t allow myself to even ask it for years. There is a lot to worry about, think about and plan for. How can anyone survive this, and not only survive, but have a child with autism who is thriving?

Recently, I read a research study on the benefits of parental support groups in families who have children with autism. I wasn’t surprised to see research reveal something I already knew. Parents of children with autism who participate in support groups report a higher quality of life for themselves, their families, and their children. This is especially true for families who have had a child recently diagnosed with autism. The CDC reports that the incidence of autism is now 1 in 68. That’s a lot of families, a lot of moms and dads struggling to adapt their lives for the special child that is no doubt their greatest joy as well as their greatest challenge. One of the best things about the Autism Society of North Carolina (ASNC) is that at any event you go to – support groups, chapter meetings, camps, conferences, workshops – it’s full of people who “get it.” There are other people who have to lock their refrigerator or follow strange rules in hopes of avoiding a meltdown or a domestic malfunction.

ASNC is here for you because we are you. We get it. We do it every day. We sit in IEP meetings and feel lost, we struggle to accept or decline invitations at well-meaning friends’ or relatives’ homes, we ignore strangers who stare, we pretend shrieking in the checkout line is normal. We learn from each other’s experiences. There’s the very special grin when we hear another person telling their story and it sounds so much like our own. Support for families really does make life better, for you as well as for your child. ASNC offers a plethora of support groups, workshops, and parent education meetings every month. I have no doubt that you want the best life possible for your child with autism. The first step, the next step, just might be for you.

Please visit one of our groups, workshops, events, or trainings, and find something that meets your needs where you are. As an Autism Resource Specialist for ASNC, I teach a variety of monthly workshops in my area designed to help parents who are new to the diagnosis, who are looking for more resources and a place to get their questions answered, or who want to learn more about the ever-popular topic of special education and IEPs. Workshops and webinars on these topics and more are taught by Autism Resource Specialists across the state. Something is happening somewhere every week. Contact your local chapter, connect with us on social media, get involved. You’re one of us.

Autism is hard; that’s why we do this together. I look forward to seeing you at an ASNC event soon.


For more information


Amy Perry can be reached at 910-864-2769, ext. 1206, or aperry@autismsociety-nc.org.

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