Dusting Off My Soap Box

According to Autism Action Partnership, the cost of therapies and treatments for a child with autism can exceed $40,000 to $60,000 per year.  The lifetime cost of raising a child with autism is $3.2 million a year.  A big majority of autism treatments are not covered by insurance.


In Brian’s short 10 years, we have participated in applied behavioral analysis, occupational therapy, speech therapy, therapeutic listening, and therapeutic horseback riding.  We have to check in with our pediatrician at least twice as much, just for check-ins, and that’s not counting all the extra visits for rashes, fevers, bronchitis, allergies, and pneumonia.  We have traveled across the country to see specialists for biomedical treatments.  We have a developmental pediatrician on top of our regular pediatrician.  We’ve seen specialists for augmentative alternative communication.  We’ve seen specialists for reflex integration.  We’ve seen specialists to do chiropractor work.

In addition to that there is the cost of getting therapy supplies at home.  If you want a well-regulated child, because believe me you don’t want an unregulated one, you have probably gone out and bought a trampoline and an indoor swing.  Maybe a deep pressure tunnel, weighted vest, noise-canceling headphones, deep pressure vest, weighted blanket, chewies, and the list goes on.  If your child is using biomedical treatments you spend a boatload on foods that are gluten, dairy, and soy free not to mention organic.  And also the supplements, which are never covered under insurance.  If your child is nonverbal you have probably bought iPads, an AAC device, and/or PECS systems (along with boardmaker).

And then the ridiculously small things that you don’t really think about until it starts to add up.  Clothes that are specifically made to be as soft as can be as your child refuses to wear most clothes due to sensory processing issues.  Special shampoo, soap, sunscreen, etc. so your child doesn’t break out in a rash every day.  A backpack with wheels because your child doesn’t have the core strength to carry a regular one on his back.  Fidget toys to keep your child entertained during public outings.  Special carseats for children when they outgrow the other ones, but can’t be safe in a regular seat in the car.   ID bracelets and temporary tattoos and GPS systems in case they ever, god forbid, get lost.  And so on.

It’s all worth every single penny spent.  Any little step towards progress lets us know we are doing the right thing and are on the right path.

To afford all of this, both parents in this family work full-time.  I honestly don’t know how we would do it if we didn’t.

However, there’s a double-edged sword to this equation.

To have two working parents you will most likely need childcare.

Except…..good luck finding childcare for a “moderate-to-severe” child with autism.  There is a reason that the school system, that is broke as a joke, supplies our child with a 1:1 support staff for the entire day.  Because he needs it.  He can’t go to a daycare, like all of our well-meaning friends suggest.  He needs support to use the bathroom, socially interact, and be safe.  If he goes into a meltdown phase where he is biting his hands and banging his head, he needs a support staff who knows a thing or two about ABA and behavior plans.

Due to unfortunate events that just unfolded a short three weeks ago (though it feels like I’ve been living this nightmare for a year), I don’t trust a single person outside of my family to care for my child.  Nearly 1 in 5 children with autism have or will be physically abused. You think it would never happen to your child, until it does.

If we did find someone it would be someone trained in autism with a lot of experience under her belt.  And it would probably cost so much, it wouldn’t make sense to work.

And Brian will need “child” care for the rest of his life.  This isn’t something we won’t have to worry about in just a year or two.

If you are lucky enough to find child care you better hope they are flexible or your job is flexible.  Because you’ll be called to the school quite frequently due to the frequent illnesses that seem to come along with the diagnosis of autism.  You’ll have to get your child to therapy appointments and specialist appointments.  You’ll have to drive an hour and a half just to get to a pediatric dentist that specializes in both autism and sedated dentistry.  You have to go to IEP meetings and pop in for a few observations in the classroom.  You are always on call.

And then you’re stuck.

You need to work to pay for your child’s needs.  But you need to do so without options for child care.

This is just another reality of parenting a child with global needs.  Another reality that needs an answer so parents aren’t burnt-out, children don’t suffer, and families don’t have to choose between therapies or quality childc are.

People think of autism and they think of Rainman or the boy who made all those shots in that basketball game or the savant who can draw entire cityscapes from memory or even Carly who can now communicate her every thought through augmentative communication.

Autism is so much more than that.  It’s difficult.  It’s stressful.  It’s an emotional rollercoaster.  It’s lifelong.  The effects of autism are not only felt by the individual but by their entire care system.

Money needs to stop going towards studies that show that parent’s of autistic children have some autistic-like qualities.  Or that maternal obesity could contribute to autism.  Or the father’s age at conception could contribute to autism.  Next, they’ll be saying that living in a red house and driving a white car could contribute to autism.

Money needs to go to help families stay afloat.  Help pay for therapy for children on the spectrum now so we’re not paying for their lifelong dependency.  Give families respite and support so tragedies don’t happen.  I see a lot of talk but not a lot of action for this population of families, one that continues to grow at an alarming rate every year.


To see what you can do to help and to stay on top of the latest lobbying efforts, please check out the Autism Action Network.

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Heather Nelson

About Heather Nelson

Heather resides in Rockland where she is busy juggling life as a newlywed, a mom to two boys (one of which who has autism), a part time job in direct sales, and a full-time job as a pediatric occupational therapy assistant. She has a love for live music, karaoke, and cheering on the underdogs.