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Autism Awareness or Autism Acceptance?
Last Friday marked the end of Autism Awareness Month this year. The celebration of this month goes back over 50 years to 1970. While there are still many great things that happen during Autism Awareness Month, like fundraisers, national/governmental attention to causes that could positively impact individuals with autism, and lots of educational resources that are released, there’s also a big movement to shift from “awareness” to “acceptance” in the past decade. Which side is correct, or whether both sides are in fact correct, is an ongoing debate. The purpose of today’s post isn’t to compare the two, since there are already hundreds of articles that can help with that. Here is one I recommend if that’s what you are looking for.
Ensuring that we hear the voice of those affected.
The movement toward acceptance is especially strong within the community of people diagnosed with autism spectrum disorders themselves, so it’s important that we can hear their perspectives first. If not, it would be like discussing pro-choice issues without any women, or something regarding LGBTQ+ with only people who are heterosexual. One area of conversation that is always a hot topic within the community of individuals diagnosed with autism is ABA. Just like when you first hear about ABA and decide to Google it, resulting in seemingly unlimited opinions, there are also very differing opinions within this community. At the beginning of April when the debate was most prevalent, I compiled six direct quotes regarding ABA from blogs and message boards in order to ensure that their voices are given to us unedited, and then I respond with ways that ABA can make a shift.
“It tries to turn us into robots.”
Sometimes the fear from parents is that ABA will make everyone with autism the same and essentially crush personalities. In my experience ABA has done the opposite and allowed personalities to shine, since enhanced communication and social skills allow the children to interact at more advanced levels. And while parents may do really well with understanding their nonverbal child, it’s tough for the child to interact with peers or people in the community without a communication system and social skills training.
An example that I like to use with families that bring up this common misconception is learning to ride a bike. When each of us learned to ride from our parents, we would often stumble or fall. Over time our skills improved, and before long we could make repetitive movements to move forward a few feet completely independently. It probably wasn’t pretty or smooth at first (“robotic”), but with enough practice we could make it much more fluent. If someone’s speech or behavior appears “robotic”, it’s typically because more training is needed until fluency.
Similar to this, there is criticism that ABA attempts to make individuals with autism “mask” their diagnosis in public in order to fit in better. Examples of masking behaviors to help them blend in are forcing eye contact, faking a smile, going through conversations with a script, etc. When it comes to masking, it’s more a product of the environment. Some settings are more accepting of things like hand flapping than others (e.g., a preschool teacher compared to a group of junior high kids during recess). ABA teaches the skills if blending in is needed but doesn’t force them in the community. Ultimately it comes down to the motivation of the individual. I think it’s summed up best in this article: “Masking begins when a neurodiverse person recognizes that something important hinges on being perceived as neurotypical. Maybe it’s friendship. Maybe it’s a job opportunity. Maybe it’s personal safety.”
“I’m not broken.”
This might’ve been the most common theme that I saw that was anti-ABA. Just like with Autism Awareness Month, the perception is that ABA’s purpose is to “fix” someone with autism. While one or two larger companies do try to market that they “cure” autism, the overwhelming majority of behavior analysts and technicians that I’ve collaborated with over the past decade have a passion for individuals with autism, don’t view them as someone “broken” that needs “fixing”, and are able to differentiate between behaviors that are anti-social and those that are unique/appropriate to the individual.
Every ABA company advertises that we treat the behavior, not the individual, but what does that actually mean? I roll my eyes when someone says “love the sinner, hate the sin” because that rarely ends up being the case, so I’m sure that someone with autism also rolls their eyes when we claim to just want to work on their behaviors and not themselves, because they most likely feel like their behavior is a big part of who they are.
So where do we draw the line?
In this context we are actually talking about decreasing problem behaviors. But just like there is a very wide spectrum for autism, there’s a wide spectrum of behaviors. I’ve worked with kids who might just flap their hands or script one line from their favorite movie a couple of times per day all the way to adults who were able to lift and throw me. One way that ABA companies can reassure individuals with autism that we genuinely believe they aren’t broken is to stick to what we were taught in grad school and only focus on socially significant behaviors. I get it - it can be hard for a 25-year-old, brand new BCBA, on her first case, to tell a new parent that her 3-year-old son hand flapping once per day due to excitement from Paw Patrol isn’t disturbing or hurting anyone, and that more effort should instead be placed on becoming more comfortable with the AAC device or potty training programming. The same goes for compliance training. No child needs to be perfectly compliant 100% of the time. Even neurotypical children are non-compliant at least a few times per week, so implementing a full behavior intervention plan in order to attempt to decrease the rate of non-compliance to zero is unnecessary, especially if the non-compliance wasn’t much more disruptive than a typical peer.
That being said, there are still behaviors where reduction procedures are necessary. Things like frequent and/or severe physical aggression, tantrums that far exceed the duration of a typical peer, and self-harm are examples of behaviors that not only have immediate safety needs but would also disrupt long-term progress (e.g. not being allowed to go to pre-school because of aggression). When a behavior is targeted for reduction, an appropriate replacement behavior is always taught as well (e.g., handing an “iPad” icon to a teacher in order to request an iPad instead of hitting for it).
“Shock therapy is unethical.”
I agree in nearly all circumstances, and I’d bet that 99% of other ABA providers agree as well. The use of shock therapy, known as electroconvulsive therapy (“ECT” for short), was used by Ivar Lovaas as an aversive procedure in one of the initial landmark research studies for ABA over 30 years ago. Today the vast majority of providers prioritize positive reinforcement over punishment, and in scenarios where punishment is used as a last resort, it’s something less intensive like a time-out.
When ECT is utilized, in my experience it’s typically done by medical professionals like psychiatrists, since they not only already have experience using it with individuals diagnosed with depression or bipolar disorder but also usually have a good understanding of the medical history of the child or adult with autism. And they only implement it as a last resort. Typically, it’s a scenario where all other options have been exhausted, and it would be more harmful to not implement ECT. For example, in this article they discuss someone who would forcefully bang his head against concrete floors.
But using shock therapy for something way less severe like hand flapping, which Lovaas had done, is not implemented whatsoever, and I’m confident that 99.99% of individuals with autism do not have behaviors that warrant such an invasive procedure.
Dr. Ivar Lovaas (1927-2010)
“The founder is also known for gay conversion therapy.”
While the 1987 Ivar Lovaas study (same person from #3) did produce a lot of great results for the individuals involved and is still mentioned today in reference to DTT and early intervention, he also conducted a separate research study more than a decade prior that attempted to modify the behavior of young boys to prevent them from becoming homosexual. It goes without saying that this type of study is unethical and has no place in society.
I wouldn’t consider Lovaas the founder of ABA, since the field predates him by twenty years. And the founder of our type of behavioral modification, B.F. Skinner, predates him by four decades. But even if he was the founder, I think it’s beneficial to keep in mind that the ABA community does not support the sexual orientation study whatsoever, and thousands of kids are still positively supported every year with early intervention services because of his 1987 ABA study.
“If ABA is so great, why doesn’t it get more support from people with autism?”
It does! There are many individuals who attribute some of their success or skills to getting ABA at a young age. These success stories don’t get the same press or amount of social media attention compared to people writing that they were “tortured” when they received ABA, but it’s easy to find people diagnosed with autism who had a positive experience.
Like I mentioned in #1 and #2, typically the concerns with ABA, which thankfully has evolved dramatically, are related to not feeling like “stimming” needs to be decreased if it’s not harmful or disrupting anything significant, not using aversive procedures, and ensuring that other medical conditions or causes are not the causes for behaviors. For example, if I were nonverbal and had a really bad migraine, with no way to communicate my need for help, I would probably engage in some problem behaviors as well. The same goes for toothaches, anxiety, GI problems like constipation, and other issues that are common with people with autism.
If you’d like further reading regarding the perspective of someone with autism who received ABA, here is an article written by a 23-year-old man who received ABA for seven years, starting at age 6.
“Employers should just accept us.”
This is where things get tricky for individuals with autism. While employers should be much more accepting of individuals with autism, they usually aren’t. Unfortunately, statistics back this up. The unemployment rate extremely high for those with autism (regularly between 75-85%). And compared to other disabilities, like intellectual/learning disabilities or speech impairments, adults with autism had the lowest rate of employment.
Experts still don’t know exactly why it’s so much lower. Most likely it’s a combination of a lack of social support due to isolation, having other disabilities as well (like seizure disorders), social/communicative deficits, and maladaptive behaviors. Needless to say, some work still needs to be done to ensure that adults with autism are better prepared, but employers also need to adapt over time.
What to make of all of this?
While I’m glad that the field of ABA has transformed over the past few decades to something more ethical and reinforcement-based, there’s obviously still more ground to cover when individuals with autism do not always recommend the type of therapy that we try to advertise is beneficial for them. Thankfully, things like aversive punishment are nearly gone, just like corporal punishment has largely left school systems as well, but it’s our job as ABA providers to address all voices from the community that we serve.
If ABA is recommended by your child’s physician or whoever diagnosed him/her, there are a few steps you can take to make sure that you are getting quality therapy. Every ABA company and BCBA does things differently, so it really does depend on who you go with. One BCBA might use more of a play-based model while another uses traditional discrete trial training. I’ll be posting another article closely related to this topic, but here are a few things to ask companies when you just want to ensure you are getting the best for your child:
Ask to speak to a BCBA during the intake process (before you even get to the assessment process, so that you don’t waste your time)
Ask if punishment is used at all. And if so, what kinds (e.g., time-out procedures, response cost, etc.)
Ask if they will collaborate with your child’s teacher, school therapists, and other private therapists.
If your child has any unique medical conditions (e.g., seizure disorder, feeding issues, etc.) ask if they have any experience with that particular condition.
Will the therapists working under the BCBA be RBT certified?
How often will the BCBA supervise the therapists?
Ask what level of parental involvement they typically require (e.g., some companies have weekly or biweekly meetings with you, while others are much less frequent unfortunately)
Ask the BCBA how much they will attempt to reduce the types of behaviors I mentioned in #2 (e.g., scripting a favorite movie, hand flapping, etc.)
How much training do therapists receive? The need for therapists far exceeds the number of children that we work with, since more and more kids are getting diagnosed with autism every day, so you want to make sure that ABA companies are not hiring someone from Indeed on a Monday then dropping them off in your house by Thursday.
If you’re still not sure which provider to go with, feel free to reach out since I will most likely know a couple high quality providers in your area. Modern Behavior Consulting is proud to be able to answer positively to all ten questions above, but I know many readers will be out of our region and/or seeking center-based services instead. If you’d like further reading regarding Awareness vs. Acceptance, I recommend visiting the websites of ASAN and Autism Speaks in order to get opposing viewpoints.