How I Battle the Hidden (& Overpriced) Costs of Parenting a Child With Autism
Here are the real costs that parents of children with autism are saddled with—plus tips for how to make the most of your money if you're shopping for sensory needs.
Having a child with special needs is expensive. And for a child with autism, like my son, the necessary equipment purchases aren't so obvious; he doesn't need a wheelchair, for example. What he does need, however, is speech apps and dedicated AAC devices (Augmented Alternative Communication) which can cost from $6,000 to $11,000. These are crucial to help a child who is nonverbal, like my 4-year-old son, communicate. Aside from those bigger-ticket items, other things that help my son—from fidget toys to adaptive clothing—are fantastically expensive. It can feel like marketers add the word "sensory" or "autism" and a toy magically doubles in price.
When I read in Time that the lifetime cost of autism tops 2 million per person, I felt like I couldn't breathe. And I'm far from alone; in 2020, the CDC reported that 1 in 54 children in the U.S. is diagnosed with an autism spectrum disorder (ASD). Boys are four times more likely to be diagnosed with autism than girls. 1 in 54 children—that's not an astronomical, one-in-a-million number, and and that's precisely why so many companies will hike up their prices: simply because they know there are so many of us, and they know that parents of ASD kiddos will do everything we can to provide the right sensory therapy equipment for our children. It's a terrible feeling knowing there are products out there that will absolutely benefit your special needs child, but you just plain can't afford them.
Thankfully, some companies have recently picked up on the need for sensory friendly clothing, toys, and furniture. Target has released affordable sensory friendly items like its crash pad, cocoon seat, and weighted blanket. Other companies like Tommy Hilfiger and Lark Adventurewear offer tagless, breathable and temperature-regulating clothing with one-handed zippers and magnetic closures.
Aside from shopping these new offerings, I've learned certain hacks over the years for how to get the items my son needs—and those non-necessities that will help him find some calm, focus, or other benefits—without having to take out another mortgage on my house. Here are the real costs that parents with a child like mine are saddled with—plus tips for how to make the most of your money if you're shopping for sensory needs.
Think outside the box.
Think about the function of what it is your child needs. Are they looking for sensory input? Something to keep their mouth busy so they can focus? Or maybe a place to safely land when they jump off their balance beam/the back of the living room couch? You can find sensory toys anywhere; don't feel trapped into buying more expensive items just because they come from a self proclaimed "sensory store for children with special needs." Can you find an almost identical thing elsewhere? Yep.
Some of the best "toys" I've found have not come from toy stores. My son's favorite thing is a dog toy. It was $2 at Petco. Did I feel super embarrassed buying a dog toy knowing full well we don't own a dog? You betcha. Did my son care? Nope. He was thrilled to have a light-up, rubbery, multi-textural toy, and bonus: That toy is virtually indestructible.
The Dollar Tree, Five Below, and Home Depot have a wide range of items that can double as fidget toys, and Joann's has a ton of furry, sequined or super-soft fabric that sensory-seeking kids both on the spectrum and off will love. Just look around and keep in mind the function of what it is you're looking for. It may not be exactly what you had in mind, but you'd be surprised how many times you'll find yourself saying, "Hey, this could work!"
Community over corporations.
Although it might feel like it sometimes (like when your friends are talking about how their neurotypical kids are "picky eaters," meanwhile you just spent the day driving to eight different grocery stores to find the one brand of chicken your kid will eat), you are not alone. Anyone with a family member who has autism knows your struggle. There are hundreds of Facebook groups, meet-ups, specialized classes and more for you to find other people who are going through the same thing you're going through—and they've got resources you might not have thought of.
Ask your local autism parenting support group where to get the best, cheapest weighted blanket nearby—or better yet, a hand-me-down. Ask your pediatrician where they suggest getting the vitamins and supplements for your kid who only eats plain pasta. Ask your kid's school teacher or therapist where they get their classroom fidget toys. There is a community of people to reach out to who have been where you've been, and have all the tips, tricks, and coffee addictions to prove it.
Follow the Amazon breadcrumbs.
If you shop on Amazon, and find an item your child needs, but the price is a little much, scroll on down underneath that item to Amazon's "Products Related to This Item" section. There, Amazon lists all of the items that, you guessed it, are similar to the item you're looking at. Chances are, one of those is more than similar; it's literally identical to what you wanted, and costs less. If you have some time to kill, (say, at 3 a.m. when your child is awake and ready for the day, NBD) and you're looking for a new sensory toy but don't have a specific one in mind, this feature can point you in just the right direction.
It's also a great way to discover new things for cheap—if you have a jumping-off point, that is. Simply look up a toy you know your kid loves, and then check out the "related" section for that item. You might find a few things you would never have thought of.
Leave out buzzwords.
When looking online for sensory toys, therapy equipment, or things like compression vests, swings, or sensory room items, leave out the words "sensory," "autism," "special needs," you name it—any word that might direct your search results to companies whose target market are desperate parents just like you.
For example, Fun and Function, a prominent sensory toy company, touts its sensory bubble tube as "providing stimulation for under responders and calming sensory input for over responders"—and that toy costs $1,069.99. It's 42 inches tall. Meanwhile, Walmart offers an almost identical three-foot bubble tube for $120. Amazon has a wall-mounted bubble wall aquarium for $299, yet a "calming" wall-mounted bubble wall aquarium from Autism Products.com is $3,999.
If you take away the buzzwords, you can automatically subtract a lot of money from your final cost. Search "hanging platform swing" instead of "platform swing for autism" and look for "oral fixation chewy toy" instead of "special needs chewy toy." Yes, it's tempting to type in the buzzwords and let the internet guide you, as surely it will point you in the right direction. But autism is an industry, like any other.
Don't fear DIY.
Whether you consider yourself crafty or not, there are some super easy ways to DIY what your child needs. If you balk at the thought of making things yourself, please know that I hot-glued 24 bean bags from the Dollar Store to a toddler blanket I already had to make a weighted blanket. If you can work a glue gun, you can do it!
That said, everyone is super busy trying to survive a pandemic these days, and spending hours scrolling through Pinterest to find something in your DIY wheelhouse may not be reasonable. So instead, try looking around your house at your child's existing toys, therapy equipment and items, and see how you can tweak/adjust/combine/improve them for your ASD kiddo.
Maybe that blanket would be better if it were weighted (hence, my bean bag hack). Maybe kiddo would have an easier time transitioning from activity to activity if they had a visual cue, like a bell or timer. Maybe it's something as simple as making a couple sensory bins to keep on the shelf for when they're spiraling out. Maybe you fill the dozens of pockets on a fishing vest (Goodwill for the win) with rocks to make a weighted vest to give them the deep pressure they're craving. You don't have to buy much; just look around and see how you can enhance what you already have.