Historically, autism has been viewed as a disorder--something that needs to be fixed, treated, or cured. Something that requires "intensive intervention." Yes, some autistic children need a lot of support, but others do not. No matter what kind of intervention your child needs, the goal should always be to help them struggle less with their challenges, while embracing their unique qualities and helping them stay true to themselves. If therapy is aimed at making your child appear less autistic, curing autism, or expecting them to conform to neurotypical (non-autistic) expectations, it can be harmful and damaging.
Many professionals that work with autistic children still believe that ABA (applied behavior analysis) is the best way to help autistic children. In my own experience, almost every parent of a newly diagnosed autistic child has expressed that they were told to put their child in ABA therapy immediately...as if their child is doomed without it. Many end up doing it because they expect the professionals working with their child to know what's best. The autism narrative that many people are most familiar with is a harmful one. Autistic advocates and well-informed parents and professionals are trying to change this, but it takes time to undo decades of harmful thinking and practices.
Ivar Lovaas & ABA
Ivar Lovaas is the founder of ABA. This quote is a mild one compared to the many other horrific things he said about and did to autistic children. For example he openly stated that he hit children, used electric shock on them, tied them to beds, and furiously screamed at them to modify their behavior in this Psychology Today interview.
You're probably thinking ABA isn't like that anymore. ABA is good now; it's new. It's "play-based." Throwing toys into an ABA session isn't the same thing as play. Using toys or preferred activities as "reinforcers" (a common ABA strategy), or dictating how the child uses those toys, isn't play. It may surprise you, but up until this year...2020...there was a center in Massachusetts still using electric shock on children, teens, and adults with intellectual and developmental disabilities. The FDA finally banned the use of electric shock (though the center is still open) after years of unrelenting opposition from disability advocates.
You know your autistic child is a person in both the physical and psychological sense. You know Lovaas was wrong in saying we must "build" a person. Your child has feelings, likes and dislikes, opinions, humor, personality, and much more. Although ABA may no longer be physically abusive, it does nothing to foster a child's autistic identity and instead imposes neurotypical expectations on them, which is mentally and emotionally damaging. Lovaas' beliefs about autism still influence modern ABA. ABA stems from behaviorism, a theory of learning that focuses on observable behavior and operant conditioning (using rewards and punishment to elicit a desired behavior). Behaviorism doesn't take into account a person's mental state or their psychological make-up (memories, experiences, feelings, opinions, plans, past trauma, etc.). ABA therapy sessions are the same. The goal is to modify your child's behavior in some way, without truly taking into account WHY they behave the way they do. So Lovaas' beliefs persist, because the psychological state of the child is overlooked while the outward, physical behaviors are shaped into something else.
Let's say everyday you get up and exercise first thing in the morning. If you don't, you know it won't happen because by the end of the day you may be too tired, have too many errands to run, have other plans, or have to cook dinner. Exercising first thing in the morning is the only way you know you'll get it in and you're committed to sticking to your fitness goals. Or maybe you have a health condition that requires you to get more exercise. But, someone comes along and decides exercising first thing in the morning isn't "appropriate." They tell you that's not how we (the majority) do it. And because the majority doesn't do it that way, it must be wrong. So now a plan is devised to make you change your routine and make you exercise at the end of the day (without your input or consent). Maybe you get some kind of reward if you do it, or you're punished if you don't. We'll say your spouse is told to ignore you no matter what if you exercise first thing in the morning (which is going to negatively impact your relationship). This is an ABA strategy called "planned ignoring" and parents are told to do this to their children when they behave in undesired ways (I'm not sure how being cold and distant is better than comforting your child when they need you most; i.e. during meltdowns). You keep trying to exercise in the morning, and you try desperately to explain why you need to workout in the mornings. But, no one will hear you out. They cut you off and explain how "we" exercise in the evenings. Or they let you finish speaking, but they don't honor what you say. Eventually you get tired of fighting and trying to advocate for yourself, or you can't take any more ignoring from your spouse, so you give in. You start exercising in the evenings. Everyone celebrates. Your met your (but really their) goal of exercising in the evenings. But now other parts of your life are getting messy and you aren't happy. You're forgetting important errands, you're not getting dinner cooked, you're cancelling plans with friends, the house may be a mess, and you're exhausted from trying to conform to everyone else's idea that exercising in the evening is the correct way of doing it. You remember how much easier it was to exercise in the morning and still get everything else done throughout the day. But, no one else thought that was "appropriate." You start thinking maybe you were wrong to exercise in the morning. Maybe that isn't how it should be done. You may even pretend you like working out in the evening and everything is great (masking). But it's exhausting to be like everyone else, and you can't measure up. You start being too hard on yourself and viewing yourself as a failure because it's so much harder for you to exercise in the evenings and still get everything else done. If only you could do what naturally worked for you, without being punished, questioned, unheard, or misunderstood. Eventually the stress gets to be too much and you find yourself getting angry, frustrated, or depressed much too often (and if you're still in ABA, you're probably getting reprimanded in some way for this). You feel as if you're out of control but don't know how to fix it. No one is addressing how you feel, only the observable behavior.
Welcome to ABA.
I'm sure this example was a little bizarre to you. Why would anybody care when somebody exercises? And how dare someone force them to change what naturally works for them! But...autistic people (children and adults) are expected to conform to non-autistic expectations daily. They're expected to do things that don't work for them. They're misunderstood because no one is asking why.
No one is asking:
Why do you avoid eye contact? (I listen better if I'm not looking at you)
Why do you like routines? (They're predictable and I can prepare myself for what's coming)
Why do you only want to read books about dinosaurs? (I love learning about them)
Why do you struggle to transition from one task to another? (I need time to process changes)
Instead of asking these types of questions, the observed behavior is misinterpreted:
He isn't listening.
He's stubborn and wants everything his way.
He's "fixated" on dinosaurs. Take them away so he learns to be interested in other things.
He's being noncompliant and refuses to follow directions.
Forced compliance is at the core of ABA.
Act how you're told to act and get rewarded, or don't act how you're supposed to and get punished (operant conditioning). Originally, B.F. Skinner used operant conditioning to train animals. Lovaas applied the approach to humans. But, humans do not learn through artificially contrived rewards and consequences. Humans are too complex for this. They learn through meaningful social interaction, safe relationships, and natural contexts.
It's important to note that if a child could behave a certain way, he would. Difficulty managing behavior is a developmental delay, just like delayed communication or motor skills. Rewarding or punishing a child for delays in his behavior and self-regulation will never help him develop the skills he needs to be more in control of himself.
With ABA, autistic children are forced to change their behavior because they're misunderstood and because their autistic traits have been deemed inappropriate by non-autistic people. But what's appropriate for non-autistics, often isn't appropriate for autistics.
Here's a few examples:
It's easy to misinterpret outward behavior if you aren't accustomed to asking "why" a behavior is occurring. This is why ABA is so dangerous. It's not okay to manipulate a child's behavior without first understanding what the behavior represents. It's not okay to force a child to act in a way that goes against their autistic nature. For example, discouraging stimming and special interests, forcing eye contact, and expecting autistic children to behave in neurotypical ways. ABA does this frequently.
There are other options.
It's important to find therapists that respect your child's autistic identity and want to support them without changing them. It's also important that your child connects with the therapist and feels safe with them.
Instead of ABA for "autism treatment," determine what your child's specific needs are. Communication or feeding problems? Find a speech pathologist. Sensory processing issues or fine motor delays? Find an occupational therapist. Gross motor delays? Physical therapist. Depression or anxiety? Counseling. (ABA will likely claim to treat speech and motor delays, but BCBAs are in no way qualified to do so).
Therapeutic riding (horses) may also be beneficial. A lot of autistic people enjoy being around animals.
DIR Floortime and SCERTS are relationship-based approaches that focus on the child's social-emotional development and needs, without using behavioral techniques (as long as they aren't implemented by a BCBA or behaviorist speech therapist).
Your child may also need academic support through special education. If you have concerns, bring them up to your child's teacher or principal.
For challenging behavior, I highly recommend reading Beyond Behaviors: Using Brain Science and Compassion to Understand and Solve Children's Behavioral Challenges by Dr. Mona Delahooke and The Explosive Child by Dr. Ross Greene. They're SO informative and do a great job explaining how behavior is intertwined with our nervous system, experiences, and development. You can get more information about each of them at https://monadelahooke.com/blog/ and https://www.livesinthebalance.org/. All resources at Lives in the Balance are free.