As I write this post, a BCBA therapist is chasing my squealing-with-delight daughter around the driveway on her riding toy during an ABA therapy session. It looks to our neighbors like I have the most involved babysitter ever, who also happens to have a curious habit of asking my daughter to stop playing and simply stand up. I hear intermittent cries of frustration, but more often, squeals of encouragement—”Yay!!! You did it!”—from her therapist when she complies.
What they don’t see is that these countless repetitions of seemingly random requests for her to “work” (simply, standing up when she doesn’t want to or looking in our eyes when we ask her to) followed by over-enthusiastic praise and positive reinforcements when she follows commands are preparing her for…well…life.
This is a glimpse at what ABA therapy looks like for a preschooler with autism. It’s something I never expected to be scheduling my life around, but I have come to deeply appreciate its value. It’s literally changing the way we communicate with our child.
If you’ve recently received an autism diagnosis for your child, your brain is probably swimming with all the new info and recommendations your psychologists, pediatricians, therapists and others are giving you. And likely, ABA therapy is part of that package. So, I thought I’d share my first-time autism parent perspective on what to expect when your child starts ABA therapy for the first time.
It’s a whole new world, you guys. But I think you’re going to love it.
Please note, I’m not a BCBA! I’m using lay terminology here. Photo by Annie Spratt on Unsplash
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You’ll start with an extensive evaluation. I know, you’ve probably just gone through hours of evaluation with a psychologist, which led to the autism diagnosis in the first place. But a licensed BCBA (Board Certified Behavior Analyst) will likely have to do their own evaluation before insurance will approve ABA therapy. For us, we did a mix of at-home and in-office evaluations for 10 hours.
Speaking of insurance, ABA therapy can be expensive. We’re incredibly grateful that we only have a very low co-pay for each session. (And yes, it is for each session. If she has four in one day, like she does sometimes, that’s four co-pays that day.) Like anything, prices will vary widely depending on who you use, but anticipate the range of $85-100 per hour if you don’t have any insurance assistance.
They’re watching you. Always watching. Haha, it’s not that sinister. But a guiding philosophy behind ABA therapy is to look at what happens immediately before challenging behavior and what response (or reinforcement) follows that behavior. For me, it was incredibly eye-opening to recognize patterns of my own—like, Ohmygoodness, I’m picking her up every time she throws a fit—which totally reinforce the challenging behavior. It may feel like you’re being judged, but if you can be open to seeing these patterns your therapy will work much better!
They may prescribe more hours than you think you need. My daughter is the most joyful child I’ve ever known, and I didn’t feel like we had too much challenging behavior from her in our day-to-day lives. We don’t have sensory meltdowns at the grocery and she’s flexible when our schedule has to change. Nevertheless, she was prescribed 25 hours per week of therapy. Now that we’re in it, I see that they were right: she really does need this much to learn these techniques consistently. And note: for us, an adult has to be present at any in-home sessions, so our schedule has also changed quite a bit.
What happens at a therapy session. Your sessions will be custom designed to target the behaviors you and the therapist agree your child needs to work on. For us, the therapists arrive at our house, often with a big bag of toys, and they just play with my daughter for 2 hours. Sprinkled through the session are requests/commands that may seem odd, but they’re teaching her the right way to ask for what she wants and to do what’s asked of her when it’s asked. So while it seems strange that the therapist stops in the middle of a happy coloring session and says, “Do this!” with her hands over her head, it actually is helping my daughter learn how to follow instructions…or politely ask not to. Note: ABA therapists can also help with specialized training, like potty training, which means they’re at your home around the clock helping reinforce the behaviors needed to accomplish those seemingly impossible tasks.
ABA therapy can feel like two steps forward, one step back. Our therapists have warned us that we may experience short periods of time where our daughter will exhibit more challenging behavior than before as she figures out what is being asked of her. They were right. But also remember that you’re likely noticing so much more about your child’s behavior than you did before…so don’t get overly discouraged.
Be open and ready to learn. Your therapist will likely ask you for lots and lots of input and feedback on your child, because you are the expert on them. But, at the same time, your therapist is an expert on behavior therapy. Be willing to try what they suggest, even if it seems out there.
Remember: the therapist is there to work. BCBA therapists have a strict code of ethics—including no gifts, at all—that I found frustrating at first. I have a whole pot of coffee right here! Why can’t I offer her a cup? But I’ve found that those rules are little frequent reminders that they’re there to work, not to hang out. As tempting as it might be to chat for a while about a good movie you saw or even theories about therapy, save that for your friends or your parent-training session with them. While they’re working, let them work.
Listen to your gut. ABA therapy can be really draining on your child—and you. Your child will probably cry. You might too. But if your heart is telling you that it’s more than just a hard session, set up a phone call to talk about the best way to move forward. Sometimes, changing therapists, session locations, or just the length of sessions is necessary for growth.
Finally, try to see the beauty in the process. When we received our daughter’s severe autism diagnosis, I cried for a week. I felt deep fear over her future…especially her adulthood, once my husband and I have our own needs from aging. I avoided returning well-intentioned phone calls because I didn’t want to cry on the phone yet again. When the lady handing the free cookie over the bakery counter waited for a polite “thank you” from my non-verbal child, I found myself crying trying to explain why she didn’t talk. Because it wasn’t that she doesn’t talk yet; it might be that she never talks.
I needed to grieve the life I had expected for her. The one I hoped for. Only then, would I be able to embrace the life she has.
The Bible promises that the truth will set you free. When I was able to recognize the truth of my daughter’s condition, it did set me free. I felt free from the burden of getting her Kindergarten-ready. Free from explaining to other moms that she’s just a little behind. And free to accept the help I thought was only available to “real” special-needs parents.
But the real beauty is that, once I came to a place of acceptance about her diagnosis, I was free to see the beauty in her differences. I no longer worried about her catching up. My freedom revealed that she was on a totally different path altogether. And it was a beautiful one.
Instead of always chasing what’s next, I can enjoy what’s now. I can stop, take a breath, and enjoy the pure delight of jumping on a trampoline or swinging through the air. Of watching bubbles pop and splashing water in a bathtub.
But the real magic is that this focus on the present has spilled over to the rest of our family too. All of us have slowly edged our way off the NASCAR racetrack that modern childhood has become. We focus less on the elite academic programs, the private sports coaching, and the FOMO that drove us to every social event our kids were invited to.
Instead, we’re taking the slower path, like hiking a lovely trail in the forest. It’s arduous at times, but the views can be stunning. We’re having important conversations, helping each other, noticing the world around us, holding one another’s hands, and looking down the path at the beautiful and rugged adventure we’re on together.
So have hope, warrior mama. Your future is bright.
If you’re also new to ABA, or if you’re a seasoned autism parent, please leave your thoughts below on what new-to-ABA parents should keep in mind. And we’d love to hear your success stories and things to watch out for too. It takes a village!