A note to parents and caregivers: This article may not be easy to read. But it is not meant to shame or indict you, rather to ensure your children with autism live the best lives they can. You love your kids and you want what’s best for them. You want them to thrive and be successful and happy. I know you would NEVER do anything to intentionally harm them. And that’s why I’m writing this—to keep you informed and help you ensure their happiness, success, and wellbeing.
Applied Behavior Analysis, or ABA, is the biggest autism therapy in existence. Experts highly recommend it be used as early as possible for the best results. Parents talk about how it’s helped their children improve. Autism organizations—including us at the Autism Site—have spoken about it, funded it, and even petitioned for it.
But for such a widespread therapy, it can be surprisingly controversial. For the sake of the autism community that has grown so close to my heart, I want to tell you about it. I understand this may upset you, and I’m sorry if it does. But there’s something you need to know about ABA: like just about any other therapy, it has a potential dark side. Many adults with autism are speaking out about negative experiences with ABA—experiences that were even abusive or traumatic for them. And as they are the ones with the firsthand experience, autism parents, teachers, and therapists must listen to them; for the sake of our precious and beloved children, we must be careful when choosing a therapy or therapist. And we’re going to help you do that, so read on.
First, a basic question: what is ABA? Developed by Dr. Ole Ivar Lovaas, it is based on the principles of learning, a la B.F. Skinner. That is, you reward a wanted behavior and punish an unwanted behavior. So ABA in its most basic sense focuses on increasing positive behaviors and decreasing negative or harmful behaviors.
It should also be noted that ABA is not just one technique or type of therapy. Many different methods fall under the ABA umbrella. Some of the more specific forms include very structured programs, like Discrete Trial Training (DTT) and Errorless Instruction, as well as more naturalistic programs, like Pivotal Response Training (PRT) and the Early Start Denver Model. Additionally, some forms of therapies are just called “ABA” so that insurance will cover it; not all therapies labeled “ABA” are actual ABA.
Though just about any form of ABA (and any form of therapy, really!) has a potential dark side, the most problematic forms of ABA seem to be those that are rigidly structured, like DTT.
Asking the Million Dollar Question
How do we tell if a therapy is employing harmful techniques? We can ask ourselves this question:
“Would I feel good, okay, or comfortable doing this with a neurotypical (NT) child?”
If the answer is no, there is a big problem with the treatment, whether it’s ABA or something else. Because ultimately, kids with autism are just that: kids. They may think or act a little differently from other children, but a neurological difference does not merit unacceptable or harmful treatment; unacceptable treatment is unacceptable treatment, and abuse masquerading as therapy is still abuse. Period.
So let’s address a few of the complaints adults with autism have raised about ABA—and look at it through the lens of that million dollar question.
But first, an important note: we recognize and respect the fact that there are a variety of different parenting styles and opinions on the best way to raise a child, whether NT or on the spectrum. While many individuals found their treatments harmful, people with autism are as diverse as neurotypicals, so there are likely other individuals who found nothing wrong with the ABA treatment they received. Ultimately, you know your child best and know what they need. As we move forward, apply these examples to your unique child, taking or leaving whatever you need.
1. Force Behaviors…with a Smile!
Others? Not so much. For example, a BCBA may ask a child with autism to touch something they find repulsive or uncomfortable, in hopes of desensitizing them to that thing. (Though, as one adult with autism points out, that doesn’t happen because sensory issues are a result of the individual’s unique neurotype; in order to get rid of the sensitivity, you’d need to get rid of the autism, which, as we know, is not possible and for many people with autism and their families, is not even desirable. So the idea of “desensitization” is really more about “faking it till you make it”).
Is that in and of itself a bad thing? Not necessarily. The controversy mainly arises when damaging therapies try to force the behavior—regardless of how uncomfortable or even painful it is—and refuse to take “no” for an answer. Especially when a child is not given a break if they become too distressed, and especially if they’re forbidden from using a coping skill like stimming.
And it’s made even more controversial when therapists demand the distressing act be done with a smile or without complaining or showing any outward signs of discomfort.
Now for the question: would we do this with a NT child? Yes, we would make them do things they find unpleasant, like clean their rooms, do their homework, or eat their vegetables. We might even urge them to do something that scares them—like jumping off a pool’s diving board. But would we force it if they start displaying signs of serious, legitimate distress due to to task? Would we give them a break to calm down, or would we stick to our guns? Would we allow them to self-regulate and calm themselves down? And would we make them do it all without complaint or resistance?
2. Eliminate Non-Harmful, Adaptive Behaviors That Are Unusual
People with autism display non-harmful behaviors that those without it typically do not, like stimming, maintaining special and specific interests, or avoiding eye contact. All of these behaviors serve a purpose of some sort. Eye contact for people with autism is often uncomfortable, awkward, or even physically painful for them. Stimming is used to self-regulate, increase or decrease stimuli, and self-express. Special interests make them happy and, as Cynthia Kim, a woman with Asperger’s, says, they’re “shelter from the storm.” These behaviors make them comfortable and are a natural form of self-expression or movement.
Now for the question: would we do the same thing to a NT child? To give ourselves a better idea, let’s say, for the sake of argument, that these comforting, joy-producing behaviors in NT kids are considered abnormal:
- Sleeping with a teddy bear at night to feel safer and more secure
- Scratching a normal, everyday itch on the arm
- Having an interest in painting, horses, or soccer
And let’s also say that, in this alternative universe, these behaviors do not interfere with daily life, are not distracting or harmful to them or others, and are not inappropriate. They’re simply a little bit out of the ordinary. They might draw eyes or raised eyebrows.
So back to our question: would we try to eliminate or punish such behaviors?
Alternatively, let’s say these “unusual” behaviors were harmful in some way: they interfered with the child’s daily life, they were distracting or harmful to themselves or others, or they were considered inappropriate. Then what would we do? Would we try to eliminate and punish these behaviors whenever they occurred? Would we manage them? Replace them? Whatever your answer may be, the same should apply to a child with autism.
3. Strict Use of Reinforcers
Use of rewards is a pretty important part of ABA, but in some cases, it can be harmful. In controversial ABA, the things a child loves most become reinforcers and these things are sometimes restricted to the context of therapy only. And they’re only given access to the reinforcer if they do everything right and, in some cases, do everything right without complaining or reacting negatively.
When it comes to NT kids, we might do something slightly similar by saying “No TV/video games/internet/texting/dessert until you finish your homework/chores. And we’re limiting the amount you can have.” But there’s a big difference between those two things: a therapy reinforcer for kids with autism could be anything, not just a fun indulgence or time-filler. That includes wholesome activities like reading or being read to, as well as comforting objects like a teddy bear or a favorite toy. In some extreme cases, it could even include affection.
So again, the question: would we apply those same principles to a NT child, if what really motivated them was a book, a toy, or affection? Would we use those things only as a reinforcer, or give them unlimited time with them once they’ve finished their tasks for the day?
For Those of You Who Answered Any of Those Big Questions with “No”…
At this point, you might be feeling defensive, angry, or frustrated. That’s totally natural. You may be thinking, “But my child’s therapy isn’t like that at all! They respect him, don’t stop him from stimming, and give him breaks, and he loves it!” If that’s truly the case, that’s fantastic! This post isn’t talking about that type of ABA. Keep in mind, however, that if the ABA makes strict use of reinforcers, your child may enjoy going to therapy just so they can have access to their favorite things.
You may also be thinking, “But you don’t understand! My child’s autism is so severe—he needs this kind of therapy!” Actually, however, there is no case of autism severe enough to merit significant distress. As one autism parent opines, “Therapy doesn’t have to be forceful to be effective.” That doesn’t mean therapy should never be challenging or encourage a child out of their comfort zone, but if they’re very upset more often than not, that may be a sign that it’s not working out for them.
You might also think, “So what do you expect me to do?! Pull my son out of therapy and sip tea while he bangs his head against the wall and screams? ABA is the only kind of therapy I can get with my insurance!” I absolutely get it, and I’m not encouraging you to stop therapy altogether. Again, not all ABA is created equal, and not all ABA is necessarily damaging like I’ve described. Many therapists practice a different form of therapy or a very heavily modified version of traditional ABA. If you’re seeing warning signs with your current therapist, I strongly encourage you to look for another ABA therapist who utilizes better, more respectful methods of teaching your child.
Bottom line is, not all ABA is terrible, and you can find a good therapist who can get results while ensuring your child is respected. So let’s move on to some tips on how to do that.
What Parents Can Do
First of all, do your research. When “shopping” for a new therapist, ask around about their policy, values, beliefs, and practices. If it matches the damaging therapies I described above, make a U-turn and walk away. It’s also important to ensure the individual is certified to provide ABA (yes—scarily enough, there are individuals who practice it without having been properly certified!). Make sure they are currently documented as a BCBA or BCABA, are properly trained (i.e. have had 1,000 hours of hands-on training by an actual BCBA with no less than 5 years of experience in the field), and have evidence of their qualifications.
Second of all, if you already have a therapist, do not be afraid to question them. Many people, myself included, have had the attitude, “They’re the professional, not me. They know what they’re doing and they know what’s best.” That’s not always the case, though. There are good and bad therapists out there, and a fancy degree framed and hanging on their wall does not necessarily trump your parental instincts. If you feel something is unnecessary, harmful, or disrespectful to your child, do not be afraid to speak up. Remember—you are your child’s advocate!
Third of all, you might consider watching out for some of these red flags:
- The therapist does not allow you to sit in on your child’s therapy session. It doesn’t matter what reason they cite—this is a huge warning sign!
- The therapist uses compliance to force the child to do something against his/her will
- The therapist does not allow breaks even when the child is visibly distressed
- Your child is visibly distressed; if they are frequently crying, screaming, trying to escape, flopping on the floor, going limp, or showing other signs of fear or anxiety, that’s a bad sign.
- The therapist insists on “normality” rather than focusing on life skills or coping skills—for example, forcing eye contact and prohibiting or punishing non-harmful stimming. Many adults with autism cite the phrases “quiet hands” and “table-ready hands” as triggering, so that’s definitely something to watch out for.
- The therapist does not respect your child’s communication unless if it is verbal. They ignore, disregard, or belittle nonverbal communication.
- The therapist focuses more on the negatives of your child’s behavior than s/he does the positives
- The therapist does not listen to your child and respect their wishes, whether communicated verbally or nonverbally
On the flip side, you know you’ve found the right therapist when they
- Have your child’s best interests at heart—not society’s
- Give your child breaks to calm/cool down, especially when distressed
- Set boundaries on physical touching—they don’t touch your child without their consent
- Accept all forms of communication—verbal and nonverbal—and listen to both
- See behavior as a form of communication and try to work out what your child is saying through it
- Don’t force your child to do something distressing
- Don’t punish when your child shows a distress signal (i.e. stims)
- Allow your child time to process a request or task rather than expecting it right away