As soon as you get a diagnosis of Autism you will begin hearing the term ABA, short for Applied Behavioral Analysis. ABA is the treatment/therapy for autism that has the highest rate of documented efficacy. That just means it’s the only thing that’s been proven to help. And the earlier
So I’m writing this little piece about ABA as a parent to a parent (because doctor’s, in my experience, mostly suck at communicating with parents and are mostly clueless about autism) having been through it and seen the good and the bad and having come out the other side with really amazing outcomes that I would want for every parent who receives an autism diagnosis. There are some important things to know, though, that can help you navigate ABA quickly and successfully.
First, what is ABA? I could go on for a long time, but suffice it to say that ABA is a method of changing behavior by rewarding the behaviors we want to see more of, with the ultimate goal of rerouting the circuitry of the brain so that those more adaptive behaviors become natural to the child. What I didn’t realize at the time, is that this is how all of us learn already. Babies jerk their little limbs around and put things in their mouths specifically for the opportunity to have a rewarding sensory experience, which they will then repeat. When a baby jerks its crazy little arms and hits a bobbly-doo on a mobile, there is a dazzling flash of color, perhaps a little tinkle of bells, or the crunch crunch of that weird crunchy material they make baby stuff out of, and these fantastic rewards get the baby to reach out and explore their world, so more learning can happen. When a baby’s face spasms into an approximation of a smile, all the adults in the room go nuts and start smiling and cooing, and baby learns to do more of that.
Now I know a flood of counter arguments are probably rushing to your mind about negative responses and how those shape behavior too. That’s getting into some higher level theory of ABA and there’s literature to go into that stuff, but I can promise you that, when practiced by skilled therapists, this method is insanely successful. It just is.
My first encounters with ABA, though, were not good, and they made me very skeptical of the whole practice. My son, who, at the time of diagnosis, was echolalic (he just repeated language and didn’t generate original language himself) was enrolling at a language acquisition preschool at University of Kansas, where I was a graduate student. Just across the courtyard from the Language Acquisition Preschool was an ABA preschool, and I toured it. It was an awful, depressing, hellish tour. I was only there for about thirty minutes, and maybe they do great life-changing work. I don’t mean to poop on them, but from my perspective, it was dehumanizing and frightening. Dead-eyed children were being led around like dogs by their therapists who were alarmingly young, cold, and barked orders at them over and over until they complied. I almost ran out of the building, and you can be damn sure that I sooner would have handed my child over to a cult leader than to that preschool.
Later still, I signed on with a dubious ABA provider recommended by my insurance, who came to our home to provide services. Similar issues occurred: a rotation of wildly unqualified therapists basically just tormented my kid (and me because I had to witness it all). One, fresh-out-of-undergrad, first-day-as-an-ABA-therapist girl, stood over my son, who was crying and plugging his ears on the couch and said, over and over, in a monotone at fifteen second intervals, “touch your nose...touch your nose...touch your nose.” I mean creepy, weird, 100% unhelpful shit. Even the BCBA (Board Certified Behavior Analyst) who is basically the boss of the therapists on the team and is supposed to be an expert, was terrible.
Perhaps you, sharp reader that you are, already noticed the discrepancies between my description of ABA and my experiences with the preschool and the dubious provider. You noticed perhaps, that this therapy doesn’t seem very “rewarding.” DING, DING, DING!
By a series of miraculous events, we found and got into The Kansas City Autism Training Center which runs Astra Day School. Oh Astra Day School, if I could but spend the rest of my life singing your wondrous praises. Beautiful school, beautiful teachers and administration, blessed, blessed, blessed are you among schools.
This school showed me what good ABA is and changed my kids life forever. So here’s what good ABA is:
- GOOD ABA IS FUN!
One helpful thing to keep in mind is that good ABA therapy looks good and bad ABA
2. GOOD ABA USES REWARDS OTHER THAN FOOD
Many ABA providers use food as rewards. I am not against the occasional use of cereal puffs, but I think we can all see the problematic nature of exclusively relying on food to reward children. First of all, your child will (duh!) get full and cease making progress. Then they will have an unhealthy relationship with food and get fat. If a provider is relying exclusively on food rewards it means they are uncreative, small-box thinkers and can’t imagine anything more rewarding than food. If kids are having fun, they are already being rewarded. Astra Day School rewarded kids with things that were therapeutically beneficial as well, like jumping on a trampoline (my super goofy son particularly loved when his teachers would peg him with red rubber balls while he was jumping on a trampoline), getting to play a board game, getting tossed up in the air, being tickled (if the child likes that), having a paper airplane throwing competition, running three-legged races, wearing a crown, the list goes on and on and on! This is the stuff you need to be looking for: creativity, fun, organic social interaction.
3. GOOD ABA PROVIDERS (drumroll)... LIKE KIDS! AND ARE GOOD WITH THEM!
I’ll be real candid, ABA is a highly structured, systematic operation and it’s practice, especially becoming an expert BCBA (which involves massive amounts of theory, knowledge, and real world problem-solving) appeals to Type A people. And thank God because only Type A people would be good at it. BUT that type A-ness must be balanced by massive amounts of compassion, humility, and just genuine affection for children. If your BCBA’s jaw visibly clenches when your child is not playing into their treatment plan as they had hoped, if their eyes narrow in determination when they look at your child, if they seem to see your child as a challenge to be conquered rather than a precious little person with potential to unlock, if they don’t seem to obviously, openly, unabashedly care for your kid or kids in general, move on!
We experienced some bad ones and the results were zero to potentially negative. Then we hit the jackpot with Megan Carmen at Astra Day School and she became almost a part of our family. She was our son’s second biggest advocate and champion (Who has two thumbs and is number one? This chica👍👍 ). She was creative, attentive, determined and worked tirelessly on his behalf, and she was always open to parent input, viewing us as her biggest resource for knowing what our son really needed. And all of our son’s seven-plus therapists at the school (Emily, Ana, the Laura’s,Cassie, and so many others!) were so fun and loving and dedicated to him, and he ADORED them. And it wasn’t just our team. Every BCBA and therapist at that school was beloved by their kiddos and was deeply invested in those kid’s futures. It was just the culture of the place. So when our son graduated from Astra Day School and headed off to enter a mainstream first grade classroom with minimal supports, team Holland was passing around the box of tissues.
3. GOOD ABA PROVIDERS COMMUNICATE WITH YOU.
You are an asset. You are the one who lives with your child day in and day out. You see their eating, sleeping, pooping, socializing, grooming habits. All of it! And you are the one who is able to articulate it as your child cannot. You are the most important source of information. You are how a therapist knows what to program for. You are how they know if their results are making it home and to other contexts. Your BCBA should openly rely on you and seek your input. Your BCBA should also be constantly letting you know what is being worked on and what you can be doing at home to assist in progress. They should have a binder of graphs that chart, in clear, no-interpretation-needed, up-to-the-minute data how your child is improving (or not), and they should be able to show you this data upon request. You should feel like a team. If you ever feel in the dark about what is being worked on with your child or how they are progressing, say something, and if after you say something you still feel uninformed, let them know that communication is a problem and you need that problem addressed. If it doesn’t get remedied, consider moving on, unless, of course, you are so dazzled with the results that you’re willing to sacrifice being in the know.
4. GOOD ABA PROVIDERS ARE TRANSPARENT
It is common for center-based ABA providers to have double-sided windows so that parents can observe their children without being observed and potentially distracting them. Astra Day School welcomed and even encouraged parents to come into the school, classrooms, wherever! To observe sessions and to learn how to work with their own children in effective ways. You should be able to observe in-home therapy and you should be welcome at your child’s school.
Let’s be real, children with special needs are among the most vulnerable human beings in society. Children with intellectual impairments are as much as 4.5 times as likely to be victims of sexual violence or abuse. As a parent of a special needs kid you need to face that. Face it. Take a deep breath and face it. Did you face it? Okay, we can continue.
Our culture doesn’t like to talk about. You will be seen as neurotic and suspicious for even asking questions that suggest you are concerned about the safety of your child. TOO BAD, SO SAD. Reality is on your side. You have to protect your statistically vulnerable child and NOBODY ELSE is going to do it for you. Don’t allow your statistically vulnerable child to be in situations where there are no measures to protect them against abuse. I, personally, would never choose a center-based provider who did not allow me to stop by and see to the safety and well-being of my child at ANY time, and I would not allow an in home therapist to request or have privacy with my statistically vulnerable child. In the next room with the door open, sure, fine. And that can change as your relationship with the provider changes. By the second year at Astra Day School, I would have trusted my son’s providers to take him in a rocket to the moon. But never, ever go against your gut. If something feels secretive, or if parents seem unwelcome, then there is probably something they don’t want you to see. It’s probably not horrific abuse, it’s probably just bad therapy. Either way, transparency is healthy and essential.
I realize that Astra Day School is a really special gem. Not every experience is going to be that magically perfect, but the closer to magically perfect you can find, the better.You have to weigh things for yourself. As a rule of thumb, I would say no therapy is better than bad therapy (both are terrible), middling therapy is better than no therapy, but don’t be content with middling therapy. Start there if that’s what you can find, but keep seeking out the best. The stakes are so high and you will never get those precious years of neuroplasticity back. It’s frightening to acknowledge, but the quality and amount of therapy you do in your child’s younger years will determine the quality of the rest of their lives... and yours. It’s the most important investment you will ever make.
I also realize that in most cases the quality of therapy correlates to cost and the cost of high quality ABA can financially ruin a family. This is a horrible reality. I got the absolute highest quality therapy for my son and lots of it and my husband and I NEVER (there’s an important exception with FIT LEARNING, which I’ll talk about another time) PAID A CENT. Yeah, you read that correctly. We paid zero dollars and zero cents. My husband works for Trader Joe’s, (blessed, blessed company!) and Trader Joe’s insanely affordable insurance covers autism services at 100%. Yes that’s right, 100%. Copay? Nope, 100%
I hesitate to share the secret because I’m kind of afraid Trader Joe’s will change their policy, but F it. If you can’t afford autism services for your child, go get a job at Trader Joe’s. If you are over-qualified, get a management job at Trader Joe’s. They make good money and it’s pretty fun. I’m sure other companies have similar insurance policies for their employees. If you know of one, please feel free to mention it in a comment. And if you have any other questions about ABA, please ask in the comments and I’ll do my best to answer. There is SO much more to discuss, but this is already long.
Good luck parent warriors!
