Autism, Disability Justice, Down syndrome, Parenting, Therapy

Regarding Applied Behavioral Analysis (ABA) Therapy

I have been reluctant to write anything about ABA. Often times when I talk about my position, I am accused of being “judgy” or “mean” to other parents. More importantly, people who have experienced ABA, practiced it themselves, and then chosen to stop have already written and created such excellent pieces about it that it felt like I’d be echoing them for my own benefit.
Every couple months, a friend or acquaintance privately reaches out to ask me about ABA and why I say such negative things about it on social media. Often times their child is in ABA therapy and seems to be playing and having fun, so how harmful could it be anyway? Rather than recreating that conversation over and over and re-living the fear of being friend-dumped each time, I want to lay out what it is I find so abhorrent about Applied Behavioral Analysis “therapy” so that I can point to it the next time someone asks. Friend-dump me quietly, if you must.
I try really hard to remain diplomatic about issues of disability justice– not because I have to or even because I should but in the hopes that because I usually have the capacity to, it may be better received. This piece is not particularly diplomatic. For a much more diplomatic post on this subject, please visit Unstrange Mind. For a calm and reasoned takedown, please see Michelle Dawson’s piece entitled, The Misbehavior of Behaviorists: Ethical Challenges to the Autism-ABA Industry.
There was recently an article on HuffPost entitled, “I Don’t Know How to Explain To You That You Should Care About Other People,” and when it comes to ABA sometimes I feel like saying, “I don’t know how to explain to you that training children like dogs is wrong.” I realize how off-putting that probably sounds, but it’s my initial reaction every time I am asked about why I have a negative view of ABA.
The principle behind Applied Behavioral Analysis (ABA) therapy is that you can train a person by using positive and negative reinforcement. There are a lot of ways to put an academic shine on that, but O. Ivar Lovaas, the founder of ABA, once wrote:

With responsibility, the developmentally disabled individual takes on dignity and acquires certain basic rights as a person. No one has the right to be taken care of, no matter how ret*rded he is. So, put your child to work; his work is to learn.”
Wow. Let’s unpack that for a moment. Developmentally disabled individuals do not have dignity or basic human rights until they perform to a certain standard. Further, they do not intrinsically have the right to be taken care of. (Side note: please check out Interdependence theory!) This is a part of the underlying philosophy associated with this practice. Disabled people need to earn their right to exist by performing less disabled, and ABA will train them to perform as a less disabled person. At its core, ABA is rooted in the hatred and denial of the humanity of disabled people. Even with the most generous interpretation, it is about pathologizing and rejecting disabled ways of being and holding up non-disabled ways of being as the only right way and the only way to be correctly human.
It doesn’t matter that it may seem like fun, it doesn’t matter that your “Behavior Technician” seems like a really nice person. It doesn’t matter that you read a study that ABA “works,” because what it “works” at is wrong. It is compliance training at its core.
Of all the demographics, one of the groups most at risk of experiencing physical, sexual, emotional, verbal, institutional, financial, and educational abuse is the demographic of people with developmental disabilities. You can double, triple, and quadruple those risks according to how many other marginalized groups they fall in.
In their piece “I Abused Children for a Living,” a former ABA therapist writes, The ‘evidence’ that they love to cite is based on torture. Would you comply with demands if tortured enough? Probably. Does that make it effective? Well, I guess that depends on what your goals are. If your goal is to gain compliance (which is the goal of ABA) then yeah I guess it’s effective at that goal, but that’s a pretty shitty goal to have, and at what cost?”
Even if we stop here, this alone makes ABA enabling of abuse against people with developmental disabilities because training compliance facilitates abuse. Yes, even compliance about putting toys away and yes, even compliance with not banging your head on the wall and yes, compliance about looking into your mother’s face when she talks. Teaching people to listen without question is grooming them for abuse, and grooming is itself abuse.
Our culture has a way of seeing words like “racist” or “abuse” as insults rather than objective realities and therefore separating them from the regular, everyday people who harm others and making it seem as if only villains in masks (hoods?) and obvious monsters can be perpetrators. That cultural practice isn’t a reflection of reality. Some things are objectively harmful and need to be recognized as such. ABA, no matter how normalized, is one of those things, and calling out injustices for what they are is a crucial part of the road to justice.
ABA uses “rewards” and “aversives” to manipulate behavior, which can remove intrinsic motivation including for learning and socializing. The lack of a reward is itself a punishment, as is the requirement to perform a task that may be painful, scary, or otherwise unbearable in order to receive it. Author and educator Alfie Kohn has written extensively about how rewards and punishments are harmful to children and promoted the concept of “Unconditional Parenting,” saying, “How we feel about our kids isn’t as important as how they experience those feelings and how they regard the way we treat them.”
Parents and therapists often use an ends-justify-the-means approach to therapy for their disabled children, believing that acquiring skills is the most important thing and that it is worth the child having negative experiences if it means that they will have a “better life.” In this context, what is considered better is what is most “normal,” or non-disabled. Survivors of ABA have come forward to say that they have Post Traumatic Stress Disorder (PTSD) and Complex-PTSD (C-PTSD) as a result of their experiences in ABA. This is not an acceptable trade-off. Suicide is dramatically shortening the life-expectancy of autistic people and autistic people are saying it is because they are not being accepted.
Autistic writer Max Sparrow, “All those years of ABA therapy will have taught them that they are fundamentally wrong and broken; that they are required to do everything authority demands of them (whether it’s right or wrong for them); that they are always the one at fault when anything social goes wrong; that they get love, praise, and their basic survival needs met so long as they can hide any trace of autism from others; that what they want doesn’t matter.”
People often say that their child has fun at ABA therapy, or that “their” ABA isn’t “like that.” Insurance and Medicaid cover ABA and not play therapy and no doubt there are therapists using other types of therapy and billing for ABA. The problem is that this perpetuates the myth that ABA is acceptable and helpful, so it really doesn’t help anyone. Similarly to how ABA sacrifices long-term mental health for short-term compliance goals, insurance fraud gives a small group of kids a better experience at the expense of the long-term realities for all children with developmental disabilities.
With the coverage of up to 40 hours a week of therapy for a growing number of children, ABA has become a cash cow for what I not-so-affectionately call the Disability Industrial Complex. (Anyone whose child has ever needed medical equipment or therapy knows exactly what I mean. $3500 for a stroller???) ABA vendors are raking it in, and even with more and more kids being diagnosed with autism, they are looking for other demographics to target. Enter children with Down syndrome. The latest and most certainly NOT great trend in Down syndrome parenting is ABA therapy. This is not about supporting people with Down syndrome, it’s about using them to make more money by preying on parents’ fears.

ABA has a predatory approach to parents. The message is that ‘if you don’t work with an ABA provider, your child has no hope,” says Ari Ne’eman president of the Autism Self-Advocacy Network. This message is now being sold to parents of children with Down syndrome, particularly under the guise that it will help them behave in such a way as to be more successfully included in school. The onus for inclusion is on the district, the school, the faculty, and the other families– it should never be on the disabled child. Children with Down syndrome have a right to be included unconditionally and all of the time.
Parents believe ABA will give their child an advantage in a world that is unaccepting because of a reasonable fear for their children. Another former ABA therapist writes, “I thought that because I cared about the kids’ well-being, because I had a strong desire to help them, everything I did must therefore be in their best interest. In my mind, it gave me a special immunity to making mistakes. Caring meant there was no way I could be hurting them. I now realize how dangerous this idea really is. I’ve hurt many people I care deeply about. Just because you care about someone or have good intentions does not guarantee you’re doing the best thing for them.”
For all the material created by adult autistics about their experiences, we have a tiny fraction of that amount from people with Down syndrome reflecting on their own experiences and none that I know of is related to the therapies they’ve done. We need to be asking ourselves the tough questions as parents of disabled children: What is my child’s experience of this intervention? What is the long-term lesson of this intervention? What else is being learned with this intervention? Just because parents have good intentions for their child does not mean they are not harming them.
I want to be able to ask people, “Would you do this with your typically developing child?” but our culture is so manipulative of children, and so demanding that their behavior mold itself to our convenience. We use sticker charts and timeouts and take away devices to cajole and force our kids to bend to our convenience and schedule. Behaviorism is an entrenched part of our culture, but not a necessary part. ABA and ABA-inspired practices might seem normal to people in part because our mainstream child-rearing practices carry similar underlying principles– that children are lesser and should be subservient to earn their place.

Amy Sequenzia writes, “I had some ABA when I was young, and I ‘flunked.’ I want to say, I am proud of this ‘F’ in my life. Of course, the ‘experts’ explanation for having failed to make me into a ‘tidy,’ appropriate,’ ‘good girl,’ obedient and compliant Autistic was my severe impairment, my extreme low IQ, my inability to learn or, as Lovaas would probably have said (and something a doctor actually said), my lack of human dignity. I prefer my own assessment: if you want something from me, if you want me to do something, respect who I am, respect my way of doing things, listen to me and allow me to disagree and to find my own way. ABA rejects all of this and that’s why I failed it.”
As a parent, I have been asked for almost 16 years now how I get my child(ren) to comply without forcing, rewarding, or disciplining them*. I don’t really know how to explain to people that children are deserving of the same level of respect and autonomy as everyone else from birth, but I do know that it’s true. I don’t know how to explain that children with disabilities have the same rights and feelings as every other person, but I know that’s true too.
“We can best help children learn, not by deciding what we think they should learn and thinking of ingenious ways to teach it to them, but by making the world, as far as we can, accessible to them, paying serious attention to what they do, answering their questions — if they have any — and helping them explore the things they are most interested in.”–John Holt

*I’m still learning and trying and growing and messing up, that’s how!

Autism, Disability Justice

We Need to Start Recognizing Ableism as the Serious Issue It Is|Guest Post

Guest post by Persephone Smith-Donohoe, 14 year old disability advocate, musician, martial artist, dancer, and big sister. This essay was originally written as an 8th grade assignment and was voted Best Presentation by Persephone’s classmates and went on to become an inspiring speech presented to students and teachers.

     On November 3rd, 2014, Jillian McCabe took her 6 year old son, London, to get ice cream. After, she took him to the middle of the Yaquina Bay Bridge. She picked him up, then put him back down again. Then, she picked him back up, said “sorry,” and threw him over the bridge. She walked back to her car, called 911 and admitted to killing London. Journal entries conclude that she had been planning the murder for weeks. The reason she did it: because she felt burdened by having to take care of an autistic child. Many people defended  her saying “well she was put under so much stress taking care of a child with ‘special needs.’” September 20th, 2016, North Carolina, Keith Lamont Scott was a black disabled man who was sitting in his car, reading while waiting for his son to come home when he was shot and killed by the police. The officer who shot him faced no charges. Joseph Nathaniel Weber was a non-speaking autistic man who was confused and scared as he tried to find protection in a home for disabled people when he was shot and killed by Kansas police on sight. Mitchell Wilson, age 11, was bullied for having muscular dystrophy to the point where he suffocated himself to death. Disabled people’s lives are not valued in our society. Many parents have beaten and murdered their children for the sole reason that they are disabled. And nearly half of the people killed by the police in the U.S. are disabled. Disabled people are constantly persecuted and discriminated against every day. Our history is filled with the bloodshed of our disabled ancestors. Their stories of oppression and mistreatment have been overlooked and ignored. Our everyday language is packed with slurs against people with disabilities, and the media continues to perpetuate it. We need to start recognizing ableism as the serious issue that it is.

Ableism is not a new or uncommon thing. It has been happening throughout all of history, but still we overlook the suffering of disabled people. Just by living in 2017, you probably know at least a little bit about racism, sexism, homophobia, and other oppressed minorities, but the majority of people have never even heard of ableism. Ableism is the discrimination against disabled people and though it’s overwhelmingly common, it goes unrecognized constantly. More than 7 out of 10 people with disabilities report being abused and yet still people pretend like it doesn’t exist. Disabled people aren’t getting support or help because we aren’t giving them the safe space to do so. Because when they do speak out, we shut them down and belittle them. But they’re probably just making it up or exaggerating because they’re ¨retarded,¨ right? During the Holocaust, Hitler made the T4 program which made it so that people with disabilities would be murdered because he wanted the “master race.” The T4 program ended up killing approximately 275,000 people with disabilities. This program was inspired by the American Eugenics Movement, which had the same idea of killing disabled people to “eliminate” any traits they perceived as “negative” from the human race. Even now scientists are trying to make technology to “fix” disabilities before the child is even born. Businesses are legally allowed to pay their disabled employees just pennies an hour and Goodwill takes advantage of this law all of the time. We can’t keep our backs turned to this injustice anymore. The longer we continue to ignore and silence the disabled community, the worse ableism will become, and the more innocent people will be harmed and killed.

Throughout this history, our language has become loaded with derogatory words and phrases that target disabled people. The English language has hundreds of ableist slurs that are used every day by ignorant people who know nothing of the harm they are inflicting on the disabled community. When people find out that their words are discriminatory, they are defensive and continue to say the words after they know its true meaning. Because of this, many disabled people are hurt for trying to stand up to oppression.  A lot of the word’s meanings have changed as well, which leads people to believe it’s okay to use them as slurs. It’s not. “Mental retardation” used to be considered the preferred term when referring to intellectual disabilities. The term translates from Latin to  “slow,” so it was used in the medical field to mean that the disabled person would meet their milestones at a slower pace. However, this word stopped being the medical term when people started using it as a slur. Similarly to the R-word, words like dumb and lame were used differently as well. Dumb means unable to speak and lame means unable to walk. Individuals with Down syndrome, a genetic difference caused by the appearance of a third 21st chromosome, would be diagnosed as a “Mongoloid Idiots.” “Duh” was used to mock the way people with low muscle tone talk. Words like “imbecile,” “moron,” “spaz,” “derp,” “cretin,” and “feeble-minded” have similar histories.  By using these words casually, it diminishes its history and causes pain to those around you who might have been or known someone who would have been considered “mentally retarded” or any of the other words listed.

The media is also to blame for the widespread acceptance of ableism. Many media outlets perpetuate ableism by using ableist language, turning disabled people into comedy and using disabled people as inspiration or plot devices. Most TV shows and movies have that one character that’s a little different from the others and generally the butt of many jokes. Some examples are Patrick from Spongebob, Stimpy from Ren and Stimpy, Karen from mean girls, and many other characters portrayed as “stupid” for comedic effect. Some characters have specific disabilities are made fun of throughout the film for entertainment. Take Gerald the seal from Finding Dory as an example. Then there are the characters that have physical disabilities who are “overcoming” or are turned into villains with a grudge against the person who caused their disability. Many TV shows and movies do a good job portraying disabled characters, but then use them as a plot device to help the main character grow and have no relevance after that. Nearly all movies and TV shows use ableist language as well. Legally Blond, Clueless, That 70s Show, The Wolf of Wall Street, and many more all use the R-word in negative ways. Even in the news, disabled people are almost always used as inspiration or as the object of pity. When people are constantly exposed to this type of discrimination, it’s hard not to adapt to it and start using the same language and laughing when someone does something “stupid.” Society has etched into our brains that being smart is good and being “stupid” is bad. That our IQ determines our self-worth. But being able to recreate patterns with blocks and do a certain amount of math problems in 30 minutes doesn’t say anything about your creativity, your ability to empathize, or your determination in things you love. We need to get rid of this ridiculous idea that not being society’s version of “smart” makes you a less deserving of a happy life. The next time you laugh because someone does something you perceive as “stupid,” ask yourself, “why do I find this funny? Is this idea rooted from society’s ableists beliefs?” And the next time you call someone “stupid” think to yourself “why is it a bad thing to not meet society’s expectation of intellect?” I challenge you to change your mindset and ideology around what it means to be “smart” or “stupid.” We can’t continue to let the media control the way we perceive disability.

Ableism is a very real, very serious issue that needs more recognition. Disabled people are mocked, beaten, and murdered every day. The list of disabled people killed by their parents and caregivers in the past 10 years is so long, it would take nearly 45 minutes to say all of their names. Not only have parents betrayed and hurt their children, but police brutality has taken many disabled lives as well. Our society has trained us to believe this is okay. Our language has given us the weapons to inflict pain upon the disabled community. Our history is haunted by the cries of disabled children who have been left in the streets to die. We can’t just sit and watch this discrimination anymore. We need to stand with the disabled people in our communities. The current events in America are scary for all oppressed groups, including disabled people. Our new president does not care about the rights of disabled people. He will not try to protect their rights and he will not try to protect their lives. We can’t let our government steal the rights of our friends and family with disabilities. We must take a stand against the oppression and bigotry disabled people are subjected to day after day. We must work to grow as a society that’s accepting of all people! All races, all genders, all religions, all sexualities and all abilities! And we must never fail to recognize the pain of another oppressed group again!

 

Works Cited

“Ableism/Language.” Autistic Hoya. N.p., n.d. Web. 08 Mar. 2017.

Agorist, Matt. “Cops Kill Speech Impaired Autistic Man Trying to Find Safety in Home for People with Disabilities.” The Free Thought Project. The Free Thought Project, 24 Aug. 2016. Web. 9 Mar. 2017.

“Crime Against Persons with Disabilities, 2009-2012.” Bureau of Justice Statistics (BJS). N.p., n.d.      Web. 08 Mar. 2017.

Everton Bailey Jr. | The Oregonian/OregonLive. “‘Sorry,’ Mom Said as She Threw Son off Oregon Bridge after Weeks of Planning His Death.” OregonLive.com. N.p., 23 Feb. 2016. Web. 08 Mar. 2017.

O’Hara, Mary. “Up to Half of People Killed by US Police Are Disabled.” Mary O’Hara: Lesson from America. Guardian News and Media, 29 Mar. 2016. Web. 08 Mar. 2017.

“People with Disabilities.” United States Holocaust Memorial Museum. United States Holocaust Memorial Museum, n.d. Web. 08 Mar. 2017.

“Retard.” Dictionary.com. Dictionary.com, n.d. Web. 08 Mar. 2017.

“Survey Finds Disability Abuse Widespread.” Disability Scoop. N.p., 10 Sept. 2013. Web. 01 Mar. 2017.