Autism: does ABA therapy open society’s doors to children, or impose conformity?
Applied behavior analysis, widely used in the US, aims to boost communication and social skills but some critics say it ‘denies kids the right to be who they are’
https://www.theguardian.com/society/2015/mar/20/autism-does-aba-therapy-open-societys-doors-to-children-or-impose-conformity
Jack, a nine-year old boy in a bright blue shirt, runs into the kitchen for his after-school snack. In between bites of an apple, he jumps up and down. David, his behavior interventionist, follows behind, preparing a form for recording data on his clipboard. After break time, he will conduct a two-hour session of applied behavior analysis (ABA) therapy, a widely used treatment program for autism.
Today, David will work with Jack to reduce some of his “challenging behaviors”, teaching him “appropriate” communication, as well as social and self-help skills, with the intention of closing the developmental gap between him and his typically developing peers.
“Please go get the map and spread it out on the floor,” prompts David. Jack follows this two-step instruction, meeting one of the goals identified by his family and behavior team. “Great job!” says David, making a tick mark on his data sheet.
David asks Jack if he would rather eat ice cream or pizza. “I don’t want to talk about pizza,” says Jack. David prompts him to try his response again. “I don’t like pizza.” David lightly praises Jack for clarifying his response and asks him why he doesn’t like pizza. “I don’t want to talk about pizza.” Jack says. David prompts him once more. “I don’t like pizza because I don’t like the way it smells,” says Jack. “Good! Thank you for answering my question.” Since they started using the ABA methodology to teach social skills, Jack has been initiating more conversations at school with his peers.
“You can earn stars when we go outside if you don’t do, what?” continues David. “Walk on my tiptoes,” says Jack (toe walking is characteristic of some people with autism). A token economy is a system used in ABA for providing positivereinforcement to a child so as to motivate him to engage in desired behaviors and to decrease “inappropriate” behaviors. When Jack earns all his tokens, he receives a reward. After practicing gross motor skills such as 10 reps of push-ups, jumping jacks and jump rope outside, Jack is rewarded with free time to scoot around in his blue wagon. “This is my train,” he says with a smile.
This is a small snapshot of a single provider of ABA therapy for one child, among thousands of children diagnosed with an Autism Spectrum Disorder (ASD). The experience, however, varies widely for families and providers around the country.
The demand for providers of ABA therapy has skyrocketed over the past five years, as 38 states and the District of Columbia have passed laws mandating private insurance companies to offer more coverage for the rapidly growing population of people with an autism diagnosis.
According to a 2014 report released by the Centers for Disease Control and Prevention, one in 68 children were identified with ASD in a study conducted in 2010. This new estimate is roughly 30% higher than the estimate for 2008 (one in 88), 60% higher than the estimate for 2006 (one in 110), and 120% higher than the estimates for 2000 and 2002 (one in 150).
“It is unclear how much of this increase is due to a broader definition of ASD and better efforts in diagnosis. However, a true increase in the number of people with an ASD cannot be ruled out. The increase is likely due to a combination of these factors,” speculates the CDC on its website.
ABA is the most widely used therapy for such children. In 1961, Dr Ole Ivar Lovaas joined the UCLA psychology department and started the UCLA Young Autism Project that grew into the Lovaas Model of Applied Behavior Analysis. Many of the strategies used are based on the principles of “operant conditioning”, a form of learning first researched by B Skinner. Its foundation relies on manipulating consequences to change the rate at which behaviors occur in the future.
Dr Megan Aclan, a board-certified behavior analyst and director of research & development at Intercare Therapy Inc, says taking data on the antecedent (what happens before) and the consequence (what happens after) of a behavior is one of the ways behaviorists use evidence to determine necessary changes in an individual’s environment.
“If we see an individual who is banging their head against a wall, for example, there are many different reasons they could be engaging in that behavior. It could be something that makes them feel good, or something they are doing to remove pain, or something else entirely. We take data to determine the function of the behavior and then try to find something that is less harmful and equally reinforcing for them, such as a head massager.”
Over 40 years of scientific research on ABA has empirically validated the approach as effective in increasing intellectual aptitude and modifying the social and emotional behavior of children with autism to match that of their typically developing peers.
But Amy Sequenzia, 31, a non-speaking Autistic – she prefers this term to describe herself – and member of the Autistic Self-Advocacy Network, argues that defining success as behaving like a non-autistic person is unethical and abusive.
“They refuse to acknowledge that being trained to obey, and to force our brains to do things in a way they are not wired to do, causes long-lasting pain or makes autistics learn the ‘correct’ answers and ‘behaviors’, while keeping their autistic essence buried and unexplored. Self-determination begins with choice and stories of adults who only want to please and look ‘normal’ should not be considered success stories,” Sequenzia wrote via email.
This is partly why Sequenzia prefers to be identified as Autistic with a capital “A” instead of as a person with autism. “I use identity-first language because it is my identity and it cannot be separated from me. I don’t think I need to remind people that I am a person […] would we say ‘a person without autism?’. Unless the autistic himself prefers person-first language, it should not be something parents, politicians, organizations or the media impose on the rest of us. I am not ashamed of being Autistic. I am not ashamed of being Disabled. I am proud. The capital letter is a matter of pride and a little bit of defiance,” she added.
Dr John McEachin, co-director of the Autism Partnership, an ABA service provider, contends that both typical and developmentally disabled children can’t always make the best choices for themselves without parental guidance.
“We’re not trying to deny kids the right to be who they are,” said McEachin. “When we have young children we have responsibilities to give them guidance because we know that kids are not always able to make good decisions to keep them safe, happy, growing and developing. We don’t let kids play video games all day long and they can’t just eat the whole bag of Oreos.”
McEachin began his graduate research with Lovaas in 1977, and published a follow-up tracking study that demonstrated ABA could produce long-lasting and significant changes.
“A child may grow up preferring to be solitary and not social. All of us have preferences, and it’s good that we are all different in those respects,” said McEachin. “But I don’t want this five-year-old with autism being forced to be solitary as an adult because he never learned how to connect with other people. We are expanding their horizons and giving them tools so that ultimately as adults they can make their own choices, but they’re not forced to live a hermetic life.”
Lovaas notoriously experimented with aversive techniques in 1965, such as electric shock to decrease certain behaviors. McEachin says punishments such as slapping and reprimanding were still being used when he joined the UCLA Young Autism Project, but in the 1980s, they made a commitment to move away from aversive strategies.
“I don’t have any ethical regrets. Times change, and what was regarded as acceptable is very different now than it was then, just as society’s views on practices such as spanking have changed. It’s important for us as clinicians to progress,” said McEachin.
Aversive procedures are not currently prohibited by the Behavior Analyst Certification Board® (BACB®), but they are rejected by many in the professional and disabled community.
Ian, 40, (name has been changed at interviewee’s request) received treatment from the original UCLA Young Autism Project between the ages of three and seven. When he received his diagnosis of autism and began treatment, he was not speaking and engaged in self-stimulatory behavior. ABA practitioners traditionally target “socially significant” behaviors such as eye contact, hand flapping, eating, toileting, self-injury, and self-control.
“I got praise if I did something they wanted me to do, but they would snap or yell if I did something they didn’t want me to do,” said Ian. “From my perspective as a child, that was just part of life and I had to comply with it.”
Ian describes his experience as positive overall because he feels it helped him connect better with other people. He currently works as a customer service representative and is writing a book of humorous quotations. He says he still has difficulty quickly shifting his attention from one task to the next, but says he has no other characteristics of autism. “If I had a child with autism, I would put them in the same therapy,” he said.
Paddy-Joe Moran, 20, autistic author of two books and administrator of online advice service ASK-PERGERS, feels that ABA doesn’t take into account that some behaviors are profoundly difficult for people with autism for very important reasons. “It seems to deal with the surface element, as in ‘we will teach your kids to be able to make eye contact’, and not actually look at it with the view of ‘it is uncomfortable and painful for your child to make eye contact with other people, so let’s just let them get on with their education and childhood without making them do this.’ There will always be people who feel ABA has worked for them, and I am not going to call them out and call them liars. But I do feel that as an autistic individual I am fundamentally opposed to the principles of ABA therapy,” wrote Moran via email.
Emma Zurcher-Long, a non-speaking autistic 13-year-old girl, began typing to communicate in 2012, defying the assumptions of her ABA team, teachers and parents that she could not understand them. She is now a blogger and advocate. “I do not blame the people who were really trying to help me. There have been an enormous amount of professionals that I have been introduced to. ABA did not fit me right,” she wrote.
Some non-speaking people with autism learn to use Augmentative and Alternative Communication (AAC) devices to express themselves. An AAC device is similar to an iPad with a wide range of features that address a variety of communication challenges. Many families have explored other methods, such as Facilitated Communication and Rapid Prompting Method. These techniques have received significant anecdotal praise but they are still being studied, and have not yet been scientifically validated.
Emma described her first experience communicating through typing in poetic terms: “I had been wearing a snowsuit and then a swimsuit. More of me was noticed.”
“Presuming competence” is a concept widely promoted by Prof Douglas Biklen, an award-winning education advocate for people with intellectual disabilities. Biklen argues that we must assume that all individuals, regardless of their difficulties, want to learn, develop and participate in the world.
“By presuming competence, educators place the burden on themselves to come up with ever more creative, innovative ways for individuals to learn. The question is no longer who can be included or who can learn, but how can we achieve inclusive education. We begin by presuming competence,” writes Biklen.
Although the sentiment behind presuming competence is well-intentioned, Julia Bascom, an autistic and director of programs at the Autistic Self-Advocacy Network, is concerned that the concept can be damaging when applied incorrectly.
“We often see parents who, for example, talk about their child in front of the child as though we can’t hear or understand them, or who infantilize their children with disabilities or enroll them in segregated programs,” wrote Bascom by email. “Later, they may learn that their child could understand what was going on around them, was bored, is intellectually gifted. And then the parents say they would not have done those things, if they had known. The underlying assumption is that what they did was wrong because their child wasn’t actually intellectually disabled. But the problem is that those things – talking about someone in front of them, dehumanization, infantilization, segregation – are wrong to do to anybody. There’s not an IQ threshold for being treated with respect, for being included, for being treated like a person.”
Despite the 2004 revision of the Individuals with Disabilities Education Act, a law which entitles each student with a disability to a free appropriate public education, Georgianna Junco-Kelman, a special education attorney in California, says that caregivers are still battling to get quality academic support for their children with special needs. Junco-Kelman decided to work in this field after she faced enormous obstacles to securing support for her own son.
“I’ve seen classes where the kids are just given stuff to play with, but the teacher is not doing anything substantive or educational,” said Junco-Kelman. “I hate to say it, but in certain classes I really see a regression back to the institutionalized days, where the kids are basically being warehoused for the day. It’s pretty atrocious. Especially in the low-income, underserved communities.” Junco-Kelman says about 20% of the cases she takes on are pro-bono, often for non-English-speaking clients.
She says when parents do manage to get a one-to-one aide for their child, they are often provided by the school district and may not have the specialized training and dedication that a behaviorist from a private agency can provide. “I’ve experienced these aides from the district and typically they are not trained and educated to handle certain levels of behavior,” said Junco-Kelman. “There are situations where the aides are just there for a paycheck and could care less what the kids do.”
Most credible private ABA agencies outside of the school district require supervisors to have a master’s degree, at least two or three years of experience and be certified by the Behavior Analyst Certification Board before taking on the supervisor role.
Eleanor Goetzinger, a behavior specialist from Oklahoma withmore than 17 years of experience consulting with special education teachers, says that many school districts don’t have specialists on staff to provide full-time one-on-one support and as a result an unrealistic level of responsibility can fall on the special education teachers.
“If you’re working with children with emotional disturbances (the term used in Oklahoma) – bipolar, autism, eating disorders, self-mutilation, schizophrenia – then it is possible that you could have seven or eight students on your caseload. This is why we have a special education teacher shortage throughout our nation,” said Goetzinger. “Society in general doesn’t understand why people with autism are so aggressive or have behavioral concerns. If you couldn’t communicate, wouldn’t you be frustrated?”
Goetzinger has seen how opening up communication through iPads, computers, Smart Boards and sign language allows students identified with autism to gain self-esteem and reach academic goals. “Students with autism are multi-sensory learners, so instructional strategies have to be utilized to help each student in a unique manner.”
“ABA seems to condition some therapists to ignore attempts at communication,” said Shannon Des Roches Rosa, editor of the blog A Thinking Person’s Guide to Autism. Her 14-year-old autistic son Leo has been receiving a version of ABA therapy since he was two. Leo enjoys hiking, making art and watching movies. He also flaps his hands and uses minimal verbal language.
“I have no intention to allow my child’s behavior to be modified. It’s about educating him.” Leo’s program does not include goals for eye contact or self-stimulatory behavior, but instead focuses on communication, modeling functional living skills such as getting dressed, and breaking lessons down into small parts to increase independence. “We have always been very vigilant that he has caring people on his team.”
Des Roches Rosa says some parents with recently diagnosed children may be too quick to trust professional recommendations (such as 40 hours of ABA therapy a week) without fully thinking through the stressful impact it might have on their child.
“Parents are using ABA because that’s what professionals say they should do and that’s what their insurance covers, but they should also seek out guidance from autistic adults and listen to their experiences,” she said. “It is important that we don’t unintentionally traumatize our own children.”
Jones writes on her blog, Unstrange Mind, “when considering whether you have made a wise choice in what therapy you are providing your child or not, you want to always remember a few cardinal rules: behavior is communication and/or a means of self-regulation. Communication is more important than speech. Human connection is more important than forced eye contact. Trust is easy to shatter and painfully difficult to rebuild. It is more important for a child to be comfortable and functional than to look normal.”
As the demand for qualified professionals in the field of special education steadily increases and the debate over the ethics of ABA therapy rages on, autistics, parents, and behaviorists can all agree that a significant population of individuals diagnosed with ASD are growing up in a society that does not yet sufficiently support their inclusion.
The names of children and some interviewees in this article have been changed.