CONTENT TRIGGER WARNING: This is only based on some of the people in the autistic community about this delicate topic yet I have done my own research and would like to share my own personal opinion on this.
CONTENT TRIGGER WARNING AND DISCLAIMER
I am no medical doctor, I am just your normal Jo Blogs, so if you see anything out of the ordinary, do seek professional help for yourself or your loved one or seek a second opinion for yourself or your loved one as I don’t condone self-harm.
Without a doubt, there has been cause of concern and cause to question about Applied Behaviour Analysis therapy largely by some parents with autistic children along with the autistic advocates, largely because of a fiercely articulate and vocal community of adults with autism. These advocates, many of them childhood recipients of Applied Behaviour Analysis, say that the therapy is harmful. They contend that Applied Behaviour Analysis is based on a cruel premise — of trying to make people with autism ‘normal,’ a goal articulated in the 1960s by psychologist Ole Ivar Lovaas, who developed ABA for autism. What they advocate for, instead, is acceptance of neurodiversity — the idea that people with autism or, say, attention deficit hyperactivity disorder or Tourette syndrome, should be respected as naturally different rather than abnormal and needing to be fixed.
Sure, it may be working for some children with Autism and not for others. I will have to say myself that what you do decide for your child is up to you. This into what I am sharing is just based on some of the research I’ve done as well as talking to some autistics on the autistic community to share what and how they feel about it all.
“Applied Behavior Analysis has a predatory approach to parents,” says Ari Ne’eman, president of the Autistic Self Advocacy Network and a prominent leader in the neurodiversity movement. The message is that “if you don’t work with an ABA provider, your child has no hope.”
What’s more, the therapy has a corner on the market, says Ne’eman. Most states cover autism therapy, including, often, Applied Behavior Analysis — perhaps because of its long history. But in California, for example, parents who want to pursue something else must fund it themselves.
Whether Applied Behavior Analysis is helpful or harmful has become a highly contentious topic — such a flashpoint that few people who aren’t already advocates are willing to speak about it publicly. Many who were asked to be interviewed for the article of SpectrumNews declined, saying they anticipate negative feedback no matter which side they are on. One woman who blogs with her daughter who has autism says she had to shut down comments on a post that was critical of their experience with an intensive ABA program because the volume of comments — many from Applied Behavior Analysis therapists defending the therapy — was so high. Shannon Des Roches Rosa, the co-founder of the influential advocacy group Thinking Person’s Guide to Autism, says that when she posts about Applied Behavior Analysis on the group’s Facebook page, she must set aside days to moderate comments.
Strong opinions on both sides of the issue abound. Meanwhile, parents like Quinones-Fontanez are caught in the middle. There’s no doubt that everyone wants what is right for these children. But what is that?
A new view on Applied Behaviour Analysis:
Before the year of the 1960s, when autism was still poorly understood, some children with the condition were treated with traditional talk therapy. Those who had severe symptoms or also had an intellectual disability were mostly relegated to institutions and a grim future.
Against this backdrop, Applied Behavior Analysis at first seemed miraculous. Early on, Lovaas also relied on a psycho-therapeutic approach, but quickly saw its futility and abandoned it. It wasn’t until Lovaas became a student of Sidney Bijou, a behaviourist at the University of Washington in Seattle — who had himself been a student of the legendary experimental psychologist B.F. Skinner — that things began to click.
Skinner had used behavioural methodologies to, for instance, train rats to push a bar that prompted the release of food pellets. Until they mastered that goal, any step they made toward it was rewarded with a pellet. The animals repeated the exercise until they got it right.
Bijou contemplated using similar strategies in people, judging that verbal rewards — saying “good job,” for instance — would serve as adequate motivation. But it was Lovaas who would put this idea into practice.
In 1970, Lovaas launched the Young Autism Project at the University of California, Los Angeles, with the aim of applying behaviourist methods to children with autism. The project established the methods and goals that grew into Applied Behavior Analysis Part of the agenda was to make the child as “normal” as possible, by teaching behaviours such as hugging and looking someone in the eye for a sustained period of time — both of which children with autism tend to avoid, making them visibly different.
Lovaas’ other focus was on behaviours that are overtly autism-like. His approach discouraged — often harshly — stimming, a set of repetitive behaviours such as hand-flapping that children with autism use to dispel energy and anxiety. The therapists following Lovaas’ program slapped, shouted at or even gave an electrical shock to a child to dissuade one of these behaviours. The children had to repeat the drills day after day, hour after hour. Yet, as we know that it’s important for us autistics to stim as this is an outlet to reduce stress and anxiety. I have shared more about stimming and its importance etc where you can watch here:
In these early years of the 1970s, videos of these early exercises show therapists holding pieces of food to prompt children to look at them, and then rewarding the children with the morsels of food.
Despite its regimented nature, the therapy looked like a better alternative for parents than the institutionalization their children faced. In Lovaas’ first study on his patients, in 1973, 20 children with severe autism received 14 months of therapy at his institution. During the therapy, the children’s inappropriate behaviours decreased, and appropriate behaviours, such as speech, play and social nonverbal behaviour, improved, according to Lovaas’ report. Some children began to spontaneously socialize and use language. Their intelligence quotients (IQs) also improved during treatment.
When he followed up with the children one to four years later, Lovaas found that the children who went home, where their parents could apply the therapy to some degree, did better than those who went to another institution. Although the children who went through Applied Behavior Analysis didn’t become indistinguishable from their peers as Lovaas had intended, they did appear to benefit.
In 1987, Lovaas reported surprisingly successful results from his treatments. His study included 19 children with autism treated with Applied Behavior Analysis for more than 40 hours per week – “during most of their waking hours for many years,” he wrote — and a control group of 19 children with autism who received 10 hours or less of Applied Behavior Analysis
Nine of the children in the treatment group achieved typical intellectual and educational milestones, such as successful first-grade performance in a public school. Eight passed first grade in classes for those who are language or learning disabled and obtained an average IQ of 70. Two children with IQ scores in the profoundly impaired range moved to a more advanced classroom setting but remained severely impaired. In comparison, only one child in a control group achieved typical educational and intellectual functioning. A follow-up study six years later found little difference in these outcomes.
The methods promised parents something that no one else had: the hope of a “normal” life for their children. Parents began to demand the therapy, and soon it became the default option for families with newly diagnosed autism.
“ Applied Behavior Analysis has a predatory approach to parents.” Ari Ne’eman
Lovaas’ Applied Behavior Analysis was formulaic, a one-size-fits-all therapy in which all children for the most part started on the same lesson, no matter what their developmental age.
Michael Powers, director of the Center for Children With Special Needs in Glastonbury, Connecticut, started his career working at a school for children with autism in New Jersey in the 1970s. The therapist would sit on one side of a table, the child on the other. Together, they went through a scripted process to teach a given skill — over and over until the child had mastered it.
“We were doing that because it was the only thing that worked at the time,” Powers says. “The techniques of teaching autistic kids hadn’t evolved enough to branch out yet. ” Looking back, he sees flaws, such as requiring children to maintain eye contact for an uncomfortably long period of time. “Five seconds. That was one skill we were trying to establish, as if that was the pivotal skill,” he says. But it was artificial: “The last time I looked someone in the eye for five consecutive seconds, I proposed.”
I also shared a few videos about autistics doing eye contact is it worth it or not?
(Video reference: Autism/Why Eye Contact is hard for people on the Autism Spectrum)
Doubts grew about how useful these skills were in the real world — whether children could transfer what they’d learned with a therapist to a natural environment. A child might know when to look a therapist in the eye at the table, especially with prompts and a reward, but still not know what to do in a social situation.
The aversive training components of the therapy also drew criticism. Many found the idea of punishing children for ‘bad’ behaviour such as hand-flapping and vocal outbursts hard to stomach.
Over the years, Applied Behavior Analysis has become more of a touchstone — an approach based on breaking down a skill and reinforcing through reward, that is applied more flexibly. It’s a broad umbrella that covers many different styles of therapy.
Among the many variations now in practice include pivotal response training, a play-based interactive model that sidesteps the one-behaviour-at-a-time practice of traditional Applied Behavior Analysis to target what research shows to be ‘pivotal’ areas of a child’s development, such as motivation, self-management and social initiations. Another is the Early Start Denver Model (ESDM), a play-based therapy focused on children between the ages 1 and 4 that takes place in a more natural environment — a play mat, for example, rather than the standard therapist-across-from-child setup. These innovations have in part stemmed from the trend toward earlier diagnosis and the need for a therapy that could be applied to young children.
Each type of Applied Behavior Analysis is often packaged with other treatments, such as speech or occupational therapy, so that no two children’s programs may look alike. “It’s like a Chinese buffet,” says Fred Volkmar, Irving B. Harris Professor of Child Psychiatry, Pediatrics and Psychology at the Yale University Child Study Center and lead author of “Evidence-Based Practices and Treatments for Children with Autism,” a book many consider the go-to reference for Applied Behavior Analysis as a result when asked whether Applied Behavior Analysis works, many experts respond: “It depends on the individual child.”
Today, Lovaas is viewed with the same kind of respectful ambivalence afforded Sigmund Freud. He’s credited with shifting the paradigm from hopeless to treatable. “Lovaas, may he rest in peace, was really on the forefront; 30 years ago, he said we can treat kids with autism and make a difference,” says Susan Levy, a member of the Center for Autism Research at the Children’s Hospital of Philadelphia. Without his passion, says Levy, many generations of children with autism might have been institutionalized. “He has to get credit for going out on a limb and saying we can make a difference.”
Testing Applied Behavior Analysis
Given the diversity of treatments, it’s hard to get a handle on the evidence base of Applied Behavior Analysis. There is no one study that proves it works. It’s difficult to enrol children with autism in a study to test a new therapy, and especially to enrol them in control groups. Most parents are eager to begin treating their children with the therapy that is the standard of care.
There is a large body of research on Applied Behavior Analysis, but few studies meet the gold standard of the randomized trial. In fact, the first randomized trial of any version of Applied Behavior Analysis after Lovaas’ 1987 paper wasn’t published until 2010. It found that toddlers who received ESDM therapy for 20 hours a week over a two-year period made significant gains over those who got the usual care available in the community.
That year, a report from the U.S. Department of Education’s What Works Clearinghouse, a source of scientific evidence for education practices, found that of 58 studies on Lovaas’ Applied Behavior Analysis model, only 1 met its standards, and another met them only with reservations.
Those two studies found that Lovaas-style Applied Behavior Analysis leads to small improvements in cognitive development, communication and language competencies, social-emotional development, behaviour and functional abilities. Neither of the high-standard studies evaluated children in literacy, math competency or physical well-being.
The following year, the U.S. Agency for Healthcare Research and Quality commissioned a stringent review of studies on therapies for children with autism spectrum disorders, with similar results. Of 159 studies, it deemed only 13 to be of good quality; for Applied Behavior Analysis-style therapies, the review focused on two-year, 20-hour-a-week interventions.
The review concluded that early intensive behavioural and developmental therapies, including the Lovaas model and ESDM, are effective for improving cognitive performance, language skills and adaptive behaviour in some children. The results for intensive intervention with ESDM in children under the age of 2 were “preliminary but promising.” There was little evidence to assess other behavioural therapies, the review’s authors wrote, and information was lacking on what factors might influence the effectiveness and whether improvements could carry over outside of the treatment setting.
Levy, who served on the review’s expert panel, says although the evidence in favour of Applied Behavior Analysis is not all of the highest quality, the consensus in the field is that Applied Behavior Analysis -based therapy works.
“There is a lot of good clinical evidence that it is effective in helping little kids learn new skills and can appropriately intervene with behaviours or characteristics that may interfere with progress,” says Levy. There are also other types of Applied Behavior Analysis that might be more appropriate for older children who need less support, she says.
Broadly speaking, the body of research over the past 30 years supports the use of Applied Behavior Analysis, agrees Volkmar. “It works especially well with more classically challenged kids,” Volkmar says — those who may not be able to speak or function on their own. These are, however, exactly the people that anti-ABA activists say need protection from the therapy.
Most experts acknowledge that there is a segment of children for whom Applied Behavior Analysis might be less appropriate — say, those who don’t need much support. One active area of research is scanning the brains of children to try to understand who responds and why. “Probably, as we go further down this path, we’ll see kids whose brains don’t change in response to treatment. They’re going to emerge as an important group,” says Volkmar. “We don’t know enough about them.”
Being able to identify those children who don’t have the expected neurological response — or being able to classify those who do into meaningful groups — might make it possible to fine-tune therapy.
“One day, it would be nice to match the treatment approach based on more information from these profiles rather than one-model-fits-all treatment,” says Karen Pierce, co-director of the Autism Center of Excellence at the University of California, San Diego, who uses imaging to study people with autism. “If we’re more informed, the treatment will be more successful.”
In December 2007, a series of signs in the style of ransom notes started appearing around New York City. One read, in part, “We have your son. We will make sure he will not be able to care for himself or interact socially as long as he lives.” It was signed “Autism.” The sign and others were part of a provocative ad campaign by New York University’s Child Study Center.
The campaign unintentionally provoked an onslaught of criticism and rage from some advocacy groups against the centre, which offers Applied Behavior Analysis. Many of the vocal activists once received Applied Behavior Analysis, and they reject both the therapy’s methods and its goals.
Ne’eman, then a college student, was at the forefront of the pushback. One major criticism of Applied Behavior Analysis is the continued use of aversive therapy including pain, such as electric shock, to deter behaviours such as self-injury. Ne’eman cites a 2008 survey of leaders and scholars in the field of ‘positive behaviour interventions’ — Applied Behavior Analysis techniques that emphasize desirable behaviours instead of punishing disruptive ones. Even among these experts, more than one-quarter regarded electric shock as sometimes acceptable, and more than one-third said they would consider using sensory punishment — bad smells, foul-tasting substances or loud or harsh sounds, for example. Ne’eman calls these numbers “disturbing.”
He and others also reject what they say was Lovaas’ underlying goal: to make children with autism ‘normal.’ Ne’eman says that agenda is still alive and well among Applied Behavior Analysis therapists, often encouraged by parents who want their children to fit into society. But, “those aren’t necessarily consistent with the goals people have for themselves,” he says.
The core problem with Applied Behavior Analysis is that “the focus is placed on changing behaviours to make an autistic child appear non-autistic, instead of trying to figure out why an individual is exhibiting a certain behaviour,” says Reid, a young man with autism who had the therapy between ages 2 and age 5. (Because of the controversial nature of Applied Behavior Analysis and to protect his privacy, he asked that his full name not be used.) The therapy was effective for Reid. In fact, it worked so well that he was mainstreamed into kindergarten without being told he had once had the diagnosis. But he was bullied and picked on in school, and always felt different from the other children for reasons he didn’t understand until he learned in his early teens about his diagnosis. He had been taught to be ashamed of his repetitive behaviours by his therapists, and later by his parents, who he assumes just followed the experts’ advice. He never realized these were signs of his autism.
Reid says he worries Applied Behavior Analysis forces children with autism to hide their true nature in order to fit in. “It’s taken me a long time to not be ashamed of being autistic, and that only came because I got the chance to learn from other autistic people to be proud of who I am,” he says.
“There is a lot of good clinical evidence that it is effective in helping little kids learn new skills.” Susan Levy
The middle ground
There might be a middle ground between critics and supporters of Applied Behavior Analysis, says John Elder Robison, bestselling author of “Look Me In The Eye,” who was diagnosed with Asperger syndrome at age 40.
Because of his late diagnosis, Robison did not receive Applied Behavior Analysis himself, but he has become involved in the issue on behalf of those who did. He envisions a place for Applied Behavior Analysis for people with autism — as long as it’s done well. That means a focus on teaching skills, rather than efforts toward normalization or suppressing autism-related behaviours: helping a child who could not communicate begin to talk and engage with other kids at school, for instance. “That is life-changing in a good way,” he says. Ditto is an Applied Behavior Analysis therapist who helps a high school or college student become more organized. The emphasis should be on learning to function in areas the individual chooses, not on changing who she is, Robison says.
This approach will require oversight from people with autism, says Robison. “ Applied Behavior Analysis programs and practitioners are going to need to accept guidance from adult versions of people they propose to treat,” he says. “What was not clear in the past is that we are the clients; we [should] have a say in what happens.”
Advocates say scientists also need to be open to the fact that Applied Behavior Analysis might not work for all. There is increasing evidence, for example, that children with apraxia or motor planning difficulties can sometimes understand instructions or a request, but may not be able to mentally plan a physical response to a verbal request.
Ido Kedar, who at 16 published his own memoir, “Ido in Autismland: Climbing out of Autism’s Silent Prison” writes on his blog that he spent the first half of his life “completely trapped in silence.” Kedar received 40 hours a week of traditional Applied Behavior Analysis therapy, in addition to speech therapy, occupational therapy and music therapy. But he still could not speak, communicate non-verbally, follow instructions or control his behaviour when asked, for instance, to pick up the correct number of sticks. Kedar understood the request but was unable to coordinate his knowledge with his physical movement. He was humiliated when the Applied Behavior Analysis therapist reported that he had “no number sense.”
Many researchers who study Applied Behavior Analysis welcome input of voices like Kedar’s. “I feel like it is the most wonderful, amazing thing to be able to talk with adults with autism about their experiences,” says Annette Estes, professor of speech and hearing sciences at the University of Washington in Seattle. “We all have a lot to learn from each other.” Estes led two studies of ESDM for children with early signs of autism. She says the worst stories she has heard are not from people who had traumatizing therapy, but from those who got no therapy at all.
“They have horrible memories of being bullied at school and [having] no one to help them or include them or help them make friends or handle tricky social situations,” she says. “I get letters from people begging us to expand services to adults to help them learn how to date and be less lonely and isolated.”
To end this: there is not likely to be an easy end to this discussion, and in the meantime, parents must do the best they can.