Autism Speaks has certainly changed in the past year, at least superficially. They created an advertisement called, “The New Autism Speaks,” wherein they introduced 2020 as the “Year of kindness.” The irony notwithstanding, it begs the question— why did it take them 15 years to come up with that?
For years, autistic people have objected to the puzzle piece as as a symbol of autism, so it may be hard to believe that Autism Speaks changed their iconic blue puzzle piece logo. Now, it’s a blue puzzle piece with a pink gradient towards the bottom.
If you notice, the pink only covers a small portion of the piece, which may be because because Autism Speaks has maintained that autism is more prevalent in boys than in girls, despite modern research indicating that girls more frequently are undiagnosed.
Something that really stands out about the “new” Autism Speaks is a video about ABA that the organization uploaded to their YouTube channel. For your convenience, here it is:
Despite the uplifting elevator music and scrolling stock images of children belying a degree of professionalism, anyone who knows about the history of Autism Speaks will immediately see the issues with the video—even after the very first line the narrator utters.
“Is your child having a difficult time following directions or calming down when they are upset or anxious?” the narrator asks. “If so, adding reinforcement to your day can be a powerful way to help.”
Do As I Say. Here’s a Cheeto.
As many who have either experienced ABA themselves or have researched the horrors of it can tell you, the primary goal of ABA is compliance. So when the narrator asks if the child is having a difficult time following directions, it is simply an alternative way of asking, “Is your child being compliant the moment you ask or command them to do something, or not?”
The video goes on to explain what reinforcement is, which is something that comes after a behavior to increase the likelihood of that behavior happening again.
Carol Millman, autistic advocate and dog trainer whose articles have been read by millions, the type of reinforcement in the video describes extrinsic reinforcement, which means that they are using external rewards to motivate the child to complete disliked activities. The narrator even says in the video, “It isn’t something your child likes. It is something they like so much that they are willing to work for it.”
Do as I Say, or No Security Blanket for You.
Such a concept can give an ABA therapist an unmitigated amount of power over the child, whether they choose to exercise that power or not.
Imagine if you were only allowed to look at your phone to read this article in twenty second intervals before someone jerked it out of your hands and told you to do a math problem. You also had to say, “Thank you, sir,” each time they gave it back.
If you were an autistic child, you could be subjected to a whole lot of that kind of treatment, like someone giving you your favorite toy only after expressing your feelings without harmlessly stimming, like rocking or flapping your hands.
According to a study done by UMass Amherst, “If a situation contains a specific goal which provides satisfaction independent of the actual activity, behavior is said to be extrinsically motivated.” In relation to the video and ABA as a whole, the “satisfaction” that is being sought is what should be the key focus.
At the end of an ABA session, is the therapist seeking the satisfaction of the child, or rather, the people around the child? For most of those who have endured ABA themselves, the answer is quite clear.
It’s hard to tell if the video was written to purposely be condescending, but the narrator states that using a reinforcer can communicate to a child that they “understand their frustration with tasks that may be hard.”
If such an attitude is used to coerce a child into completing a task that is painful or overwhelming, their favorite toys or food will end up becoming a reinforcer of trauma rather than giving them a sense of satisfaction.
As Autistic Mama wrote on her blog, “People think that because most new ABA therapists aren’t actively punishing children who refuse to comply it isn’t harmful, but withholding something the autistic child needs or wants, whether it’s food, an object, or even attention is really problematic.”
No kidding. The days of Ole Ivar Lovaas slapping and shocking children for echolalia or flapping their hands may not be as prevalent as they used to be, but there’s no denying that the methods used today can still leave psychological scarring on children who are victims of systematic coercion— just in different ways.
It’s like a defective car with a new coat of paint. Just because you make a car look pretty doesn’t mean it’ll run if you still have a defective alternator inside.
Suffering Is Worth It… for this Toy you can’t otherwise have!
Another thing the video talks about is how going to the grocery store is challenging for a child. “Instead of bribing them to suck it up and do it anyway, they could be identifying what it is that makes going to the grocery store so unpleasant and troubleshoot ways to reduce the unpleasantness,” Millman added. “Why bribe a child to suffer in silence when you could be relieving the suffering to begin with?”
Millman addresses a common critique autistics have about ABA, which is that it simply seeks to extinguish behaviors while ignoring the emotional wellbeing and needs of the child. There is nothing unhealthy about giving a child space to communicate when they’re feeling uncomfortable.
When they are uncomfortable, their autonomy needs to be respected, and they should have the right to leave the grocery store if it becomes too much for them. Going at an earlier time in the day, when there are fewer people present, is a great way to make the experience easier. Tinted sunglasses can also be useful, in case the child is overstimulated from the lights in the store. Ear defenders can reduce the overstimulation of sounds.
None of those alternatives cost the thousands of dollars that ABA requires and none require coercion.
The video’s problems are not just isolated to the statements made by the narrator. About halfway through, a boy is rewarded with cookies for putting on play clothes after coming home from school.
First of all, rewarding a child for putting on clothes is not that much different, conceptually, from giving a dog a treat for sitting. It’s the same idea with just the variable of achieving the award being different.
If the child feels comfortable in the clothes he was in, why ask him to change, using cookies to meet those ends? Why not just make the goal of clothes being comfortable enough to learn without the distraction of sensory overwhelm?
Learning More than Doing X Action Earns a Cookie
An implication in the video is that getting the reward makes the child learn to complete the task strictly because of behaviorism principles of reinforcement.
However, actual behavior reinforcement is mostly subconscious. A child is learning more than just that performing an action will yield a cookie.
Examples of real learning include learning to like the flavor of an orange or learning to hide feelings from your dad. Those examples are things that become core parts of you without knowing how you got there.
The activities in the video are conscious game-playing and don’t cause the task-completing behavior to be a core, automatic part of the child. One way to see the difference is to spot how long it takes to extinguish the behavior after the reward is gone. People who learned to hide feelings from their dad will continue to do it for decades after he’s gone, or they will eat oranges for the rest of their lives.
But if the cookie is not presented after homework, the homework behavior will end suddenly because it is not a learned behavior. Maybe the child has learned that others are only investing their time, their toys, and their praise in them when they tolerate what is unbearable without complaining.
That is how behaviorists can so easily coerce children into doing their bidding.
Choosing Their Poison: Or, fighting a lose-lose battle
What’s perhaps more disturbing than coercion is the next section of the video, where the directive states to “allow choice” of a certain play activity for the child after completing a task. Instead of just one reinforcer, the child has multiple things they enjoy that will forever be associated with trauma because of forced compliance, rather than just the one.
The child learns to do tasks that are unrewarding intrinsically, or internally, and have no value to them in order to have access to external rewards not related to the task.
The idea of “choice” in this scenario is simply an illusion because regardless of how many options they have at their disposal, the child has no choice but to complete the task regardless if they get an iPad, cookies, or a toy truck in the end.
On the other side of the coin, children can learn how to make choices between things if there are two or three options at first. It’s normal to do something fun after doing homework, but when it involves changing autistic behaviors, which ABA tends to focus on, it ends up becoming torturous rather than motivating.
Instead of rewarding a child for completing a task or tolerating distress without objection, parents should find ways to inspire and motivate children to do tasks which are inherently beneficial and in ways that make those tasks worth the effort to complete them.
If a child wants cookies, the parent could help the child feel motivated to go to the grocery store to get the eggs, flour, chocolate chips, and butter needed to make them.
If an autistic child is struggling with homework after a day of intense sensory overload, then the parent could allow the child a break to clear their mind. The parent could use that time to strategize how to break the homework down into manageable steps that are not as overwhelming or search online for fun learning activities and videos to complement the lesson.
What to do instead:
There are no therapies inherently needed just because a child is autistic. Parents will be pressured to put their children into intensive therapies as soon as the process for diagnosis begins.
Often, these therapies will seem abusive to parents, and parents should trust their instincts. Sometimes a therapy that isn’t inherently harmful, like OT, speech, or physical therapy, can use the same principles of reinforcement and coercion.
Here is a helpful article to determine if a therapy is helpful or harmful
This comprehensive parenting guide by Star Ford teaches parents how to balance control and healthy boundaries without coercive measures.
We at NeuroClastic feel that the Montessori approach to education is philosophically ideal for fostering a healthy relationship with learning and self-determination and respects the atypical developmental timelines for autistic kids.
If you want a therapy that can help a child reach their fullest potential without feeling ashamed of themselves because of the way they were born, the SCERTS Model shows some promise.
Endorsed by Steve Silberman and the Autistic Self Advocacy Network, the SCERTS program will increase the likelihood of your child coming home happy instead of eating their feelings in cookies in perpetuity.
(This is an article I originally wrote on NeuroClastic. Link is here)