Our family doesn’t need a month to be aware of autism. We live autism 24/7/365 because all three of my sons are autistic. When I let people know that (because sometimes I need to explain their behavior), I usually get the same responses:
“Wow.” (Tell me about it.)
“But they’re high functioning, right?” (Nope.)
“I don’t know how you do it.” (I didn’t know I had the choice not to.)
Another April is here and landmarks are lit up in blue for World Autism Awareness Day. We shined blue light bulbs on our front porch, too. Awareness is fine, and I appreciate compassion and patience for my children.
But more than awareness and blue lights, families like mine are desperate for action.
How often do we try to fix everything for our kids? After diagnosis day, I became a bulldozer mom, crushing obstacles for my oldest thinking that made him safer and happier. I did him a huge disservice. Instead of crushing obstacles, I have to teach my boys to power through those social and sensory challenges. Autism profoundly changed the way I parent.
We communicate differently, deciphering the boys’ messages coded as Daniel Tiger songs. And they can never, ever be left alone. My fellow autism moms describe their experiences as stressful and exhausting, but also uniquely challenging. We are experts in perseverance, and our goals are simple. We want our kids to make friends and live as independently as possible, but how do we get there?
Resources that make the biggest impact don’t come cheap.
Intensive therapies like applied behavior analysis (ABA) or relationship development intervention (RDI) can be life-changing. We take the ABA route. ABA is an evidence-based intervention that helps children learn new skills, generalize those skills, and reduce problem behaviors.
For example, my oldest son stopped bolting in the grocery store, learned to ask for help instead of exploding, and started reading. He found his voice thanks to ABA, at an average cost of $46,000+ per year.
The state of Virginia requires insurance companies to cover ABA, but that mandate does not apply to all plans, and coverage is limited to ages 2-10. Autism will not magically disappear when my kids reach 11, and they will need supports well into adulthood. We need our fellow Virginians to take action and pressure the General Assembly to abolish that age cap.
Add the need for additional speech, occupational, and recreational therapies, and costs continue to skyrocket. This is why the ARC of Virginia and advocacy groups pressure legislators to approve a budget that expands waiver supports to disabled individuals.
My oldest turns 10 this year, and community supports and vocational training are on my radar.
The Bureau of Labor and Statistics reports the unemployment rate for people with disabilities is 10.7%, double the rate of those without disabilities. We need to pressure schools to include more community-based instruction and vocational skills for students with special needs.
The Virginia Department for Aging and Rehabilitative Services (DARS) works with community partners to provide training and employment opportunities for people with disabilities. I didn’t know about this agency until I spoke to my friend and coworker, Dawn Snider, who has an adult son with autism. If you are a business owner, I encourage you to contact DARS to learn how they can help you recruit, train, and retain a dedicated and diverse workforce.
My husband and I want our children exposed to different places and situations, so we take them everywhere.
Maybe you’ve seen us in public—the loud crew in the three-seater shopping cart. One kid is flapping his arms, another squealing loudly, and a third singing the “Misty Island Rescue” theme song on repeat (a Thomas & Friends movie for those not in the know).
With autism affecting 1:68 children and 1:42 boys, I guarantee your children have autistic classmates or neighbors.
Remember them. Invite them to birthday parties. Schedule a play date. Take coffee to their parents. Support the Autism Society of Central Virginia’s programs. Be more than aware, and create an inclusive community that shows empathy, celebrates diversity, and protects the most vulnerable members of our society. My three kids deserve nothing less.