An updated version of this article appears here
ABA is a behaviour modification method for the ‘treatment’ of autism. It is used particularly with autistic children who struggle with communication and self-regulation. ABA is often said to be ‘evidence-based’, in spite of there being little evidence of support for ABA from the community it purports to serve. This article, written for a South African audience, provides an introduction to the writing of non-speaking autistics on their ABA experiences.
ABA is not supported by the majority of autistic people, as it violates the UN Convention on the Rights of People With Disabilities.
Introduction
The ‘gold standard in autism treatment’ is a behaviour modification method called Applied Behavioural Analysis, or ABA. ABA assumes that ‘severely autistic’ people are ‘developmentally delayed’, and that they lack the motivation or intelligence (or both) to behave ‘normally’. To motivate autists to change their behaviour, and to teach them things they are assumed to not know, therapists called Applied Behavioural Analysts and Behaviour Technicians drill children for hours per day using rewards and withholding of rewards, and in some cases through more explicit punishment (called ‘aversives’). ABA is also used to teach life-skills, such as brushing teeth (although for many, this does not work).
A therapist uses PECS (an ABA-based method) with a child in a classroom. The therapist controls the child’s arms to select the ‘correct’ cards and hand them to her. Gradually, the child is encouraged to do this independently.
Some ABA is done at home by parents themselves, replacing normal parent-child relationships.
ABA underlies several other methods as well, including Positive Behaviour Support (PBS) and PECS (Picture Exchange Communication System).
Ilana Gerschlowitz is the Managing Director of Star Academy, which delivers ABA services in several provinces in South Africa. Ilana sees herself as a loving warrior mother waging a war against autism. In her book Saving My Sons, she explains how she has used ABA and other methods in her war. She also describes how she attempted to murder her son David and left him slumped on the floor, and how she learned to remove herself from the situation when she is tempted to murder him.
To understand ABA better, Ilana recommends searching the Internet for information on Ivar Lovaas, one of the ‘fathers’ of ABA.
Ivar Lovaas and the origins of ABA
ABA as we know it today developed from B. F. Skinner’s operant conditioning model for animal training. Lovaas and others used these principles and adapted them to create methods for dealing with homosexual and autistic children. Lovaas did not consider autistic children to be people until they had undergone his ‘therapy’ to ‘build a person’. His treatment included electric shocks as punishment for behaving autistically. Although he later modified his approach, electric shocks are used as punishment at the Judge Rotenberg Center (JRC) in the USA as part of ABA to this day. ASAN (an autistic-led organisation), ADAPT and other disability rights organisations protest against this abuse in an effort to have it stopped. The JRC employs Board Certified Behaviour Therapists (BCBAs), i.e. ABA practitioners certified by the BACB (Behaviour Analyst Certification Board).
The following articles provide a glimpse into Lovaas’ work. They come with a trigger warning, as they provide accounts of torture and dehumanisation:
- Screams, Slaps & Love: A surprising, shocking treatment helps far-gone mental cripples
Life Magazine, 1965 - “After you hit a child, you can’t just get up and leave him; you are hooked to that kid”
Interview with Ivar Lovaas, Psychology Today, 1974
Although aversives are still widely used, most modern ABA (and PBS particularly) relies on showing kindness and approval in exchange for the desired behaviour, while deliberately ignoring a disabled child’s distress signals, or paying attention to them only if they are expressed in the ways prescribed by the therapist. Some ABA practitioners working in schools will put a sign on the door saying that Planned Ignoring is in progress, so that other teachers will not come to the aid of children they hear screaming.
A printable sign sold online for ABA therapists and teachers to use when engaged in Planned Ignoring.
Children learn that expressing their feelings in autistic ways is unacceptable, and will not be rewarded. Some CARD-trained ABA therapists will not allow non-speaking children to use the signs or symbols for ‘no’ or ‘stop’, so that they cannot object to anything done to them.
The Lovaas legacy continues in academia and beyond through the work of ABA experts such as Ron Leaf, who began his career working with Lovaas in 1973, and who has dedicated some of his most recent work to Lovaas. In spite of being complicit in human rights violations, Leaf’s licence as a psychologist has never been revoked, and he continues to work with autistic people. Leaf and his associates discourage the use of other therapies alongside ABA, stressing the importance of 40 hours per week of ABA drills from an early age.
In this interview, Jay Jay, an autist who was non-speaking until the age of 12, explains how such intensive ABA over many years served as a foundation for further abuse and led to cPTSD.
ABA, law and government
ABA was originally developed to turn homosexual people into heterosexuals, starting at an early age when children display gender non-conforming behaviour. In some parts of the USA, Australia and other regions, it is no longer legal to use ABA for this purpose. However, it has not yet been banned for use against autistic people. In some countries, such as the USA, the government pays for autistic children to undergo ABA, and parents may even by forced to keep their children in ABA, as described in this first-hand account. In the USA alone, the ABA industry rakes in approximately 17 billion dollars per year, and is gearing up to expand even further with the support of Autism Speaks.
Needless to say, ABA is not supported by the majority of autistic people, as it violates the UN Convention on the Rights of People With Disabilities. Autistic human rights activist Ruti Regan explains how this makes ABA, even in its ‘gentle’ forms, different from typical parenting.
A few people voluntarily undergo ABA to acquire new habits, but compared to the numbers who undergo ABA as forced compliance, this is rare.
Non-speaking autistics’ experiences of ABA
Emerging evidence shows that apraxia is the primary reason why many autistic people either don’t speak at all, or do not speak reliably or effectively.
Autistic people who have apraxia struggle with purposeful movement. This means that they will struggle to execute even the babyish tasks given to them by Applied Behavioural Analysts, while those who have fewer movement problems may become more adept at faking normal and developing the responses which parents and therapists deem necessary. Nonspeaking author Ido Kedar (also quoted below) elucidates this discrepancy based on his experience.
See also: Six Things You Should Know About Apraxia
While there are many accounts of the traumatic effects of ABA written by autistic people who speak well, the present article features only the writing of non-speaking autistics. Their words are significant, because the more disabled and apraxic the individual, the more likely they are to be targeted with ABA.
40 hours a week of touching flashcards won’t help a toddler who may have an inability to focus visually, or hear speech distinctly in a sea of sounds, or be able to move the way he wants, to gain the sensory control or muscle control he needs to be able to communicate or show his intelligence. That’s because ABA believes autism is a severe learning disability that is treated by drills, rewards and baby talk. This makes recognition of the motor challenges nearly impossible because all the data from the child’s success in performing the drills is interpreted as a measure of how much the child understands speech, and not of whether the child can get his body to move correctly. Therefore if a child is told to jump and he doesn’t jump because he can’t get his body to move at that moment in that way, his failure is chalked up to a lack of understanding the word ‘jump’ even if he damn-well understands the word ‘jump’ and everything else. To interpret data solely based on the belief that a person’s actions are an accurate reflection of their comprehension of speech, leaves out the possibility of helping this motor trapped person address his real needs.
As someone who has had every sort of treatment thrown at them, I say don’t do any of these things! No child should be in 40 hours of therapy like I was. The most effective thing my parents did was to join me in cutting paper and the things I loved to do. It was the only way I knew to connect with the outside world. All the rest of it was irrelevant. Understanding that your child experiences the world very differently from you is the first step towards acceptance.
Sometimes I wonder what my childhood would have been like had I just been allowed to be able to do my own thing. Stopping my behaviors was the wrong way to go. Fortunately, I’m a pretty patient guy.
Some recommend up to 40 hours per week of this “therapy”, which consists of commands an Autistic child must follow to exhaustion, responses an Autistic child must give “correctly”, even if the answers don’t match the child’s feelings or preferences, and the repression of movements that Autistics use to regulate their own bodies.
Besides this extreme regimen, the “experts” insist that parents use the same tactics at home.
So, parents pay a lot of money to people who don’t allow Autistics to experience growth, and the world, the Autistic way. They pay for abuse.
Parents are made to feel guilty and encouraged to force their children into molds that were not made for them.
Autistic children are not allowed to be themselves, being forced instead, to learn how to pretend, never learning self-determination, never allowed to have an independent thought.
Not surprisingly, the majority of ABA proponents are making a lot of money by stealing the childhood of Autistic children. 40 hours/week of drills, plus homework, the children don’t experience their own personal development.
This is considered abuse, if done to non-autistics. And then we have to hear that WE cost too much money.
Wrong: ABA therapists cost too much money. Take them out of our lives, let Autistic children be children. Let Autistics develop in our own time, learning about ourselves, learning self-determination.
I can hear the apologists:
“My ABA is not like that.”
If you bill ABA prices, if you want to change how an Autistic acts, reacts, or interacts with the world, and your ideal model is a neurotypical type of behavior, your ABA is as bad as I described it.
“My child loves it.”
How would you know, if she is not allowed to have her own thoughts? The word “no”, or refusal to comply with the therapist’s commands, are not allowed.
Another reason is that children do learn to fake in order to please. That is, after all, what ABA defines as success: obedient pleasers. It is not enjoyment, pleasant or something to look forward to.
Yes, some children might show enjoyment in some moments, but I did too, when I got my cookie for looking at the therapist. I wanted that cookie, I briefly looked at her, I got my wish. You could say that, at that moment, I “loved it”.
See also: Appearing to enjoy behavior modification is not meaningful
“It is not as bad as you think.”
Yes it is. Putting children through unending hours of training, not allowing them to be who they are, forcing an experience of the world we Autistics can never naturally have, and stating how not good enough we are to everyone else is pretty bad. It is abusive. It is disrespectful.
“Autistic children need to learn certain skills.”
All children do. Respectful approaches don’t cause trauma and value our essence. It does not imply we are broken.
All children make mistakes and they have a chance to learn, they are kindly guided and taught. But to ABA proponents, Autistic children (and Autistic adults) are not allowed to err, or they are forever labeled a failure, or abused until they “get it right”.
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.
I am, though, a very disabled Autistic who needs a lot of support, but who is completely independent in what I believe matters most: my thinking, my ideas, my decisions, my identity.
I am completely distinguishable from my peers, and proudly so.
I am free to say “no” when I see fit. And I do.
As an autistic boy, I want you to know I am happy. My autistic neurology makes me think very differently than most people. I can sense the world keenly, making me a very observant person. People make wrong assumptions about people who don’t act like a typical person. Making assumptions about something as important as your child is dangerous if you make the wrong conclusions. I have lived the consequences of my parents’ wrong assumptions. Being thought as retarded and in need of remedial education assigned me to many years of ABA and useless therapies based on neurotypical assumptions of autism. Man assumes many things they don’t really know. The best way to know someone is to hear from them personally. The only way to hear from me has been through RPM (Rapid Prompting Method). I think most autistic people can make use of assistive means to communicate. Parents should look into learning more communication methods. Body awareness programs would also help a lot. My parents have done a lot of therapies. Making life as normal as possible and helping us to communicate is what makes the biggest difference in our lives. Please teach us interesting things. Don’t just address the things you want to fix. Accept us the same way you want to be accepted yourself. Mainly, maintain an attitude of love and patience towards us. Making us feel loved is an essential part of helping us meet the challenges of living in this world.
I was treated with mostly kindness, but the therapists could not see beyond their training. I learn quickly, but am not able to reply with words that sound right to another.
Worry becomes everyone’s focus.
Real learning happens when no one notices.
The goals waste away.
Tender feelings do not hurt, but are not helpful because they cannot soothe wounds of being constantly underestimated.
We did ABA (applied behaviour analysis) for a short time before we worked out how terrible it is. Autism can’t be cured, and you can’t train us like dogs. What the ABA people are missing is that autism is neurological and that we are whole people with no pieces missing. They presume incompetence.
Who is using ABA in South Africa?
While some are vehemently against ABA, many autism schools, therapy centres and independent therapists in South Africa provide ABA services or incorporate ABA principles in their approach. Descriptions such as ‘ABA grounded’ and ‘ABA based’ are common, showing that these service providers see ABA as a positive selling point. Approaches that align to the nihil de nobis sine nobis principle embodied in the CRPD are seen to be unimportant. Simply put, many service providers don’t think they should be led by what actual autistic people say harms them or helps them.
ASAP Autism in Somerset West and Amazing K Autism School in Johannesburg emphasise ABA in their marketing.
SNAP (based in Durbanville) provides one-to-one ABA as one of their services, and use a variety of other ABA-based approaches (including PECS) in their work.
Els for Autism focuses largely on providing ABA services, emphasising the need to start as early as possible.
REACH Autism and Luc Academy both employ ABA in their work. The parents who lead these companies have also used chlorine dioxide on their children and encouraged others to do so.
A note about CD/MMS
Using chlorine dioxide on children is both harmful and illegal. The chemical, also referred to as CD and sold as MMS, is administered to autistic children by means of a rubber hose up the anus to force it into the intestines. It is also squirted into other orifices and sometimes into the eyes. The belief is that this will cure the children of mythical lifeforms called ropeworms that breed at full moon and cause autism. People who ascribe to these quasi-religious beliefs ironically refer to symptoms of chlorine dioxide poisoning as “signs of detox”. None of the South African perpetrators who have confessed to these crimes have yet been convicted. They continue to work with children using ABA. A few CD/MMS sellers have been arrested in other countries, but tens of thousands of sellers and users are still at large. While it is common for MMS believers to use ABA, the reverse is not true; most ABA practitioners do not believe in the existence of ropeworms, and discourage the use of chlorine dioxide.
Star Academy is one of the most expensive ABA schools in South Africa and has several branches. Therapists at Star are trained according to the CARD model of ABA. (Some of the parents whose children attend Star Academy have also used chlorine dioxide on their children, but it is unclear how prevalent this is among the rest of the families. Therapists and parents who were asked have declined to comment.)
The founder of Star Academy, Ilana Gerschlowitz, also runs an ABA-based programme called Catch-Up-Kids.
AIMS Global does not use ABA, but requires that its therapists be trained in ABA, and recruits them accordingly. They also make it clear to clients that their therapists are ABA-trained, and (perhaps because of this ambiguous marketing), some AIMS therapists report that parents expect them to ‘fix’ their children. The founder of AIMS, Karla Pretorius, also says that ABA experience is important for dealing with children who are aggressive. (Many former ABA practitioners who have denounced ABA disagree.)
Blossom Interventions similarly uses an ABA hashtag in their marketing, and says that “we are previously trained in ABA; however we do not fully apply it in therapy anymore. We prefer using a combination approach that ensures we deliver customised strategies for every child.”
Some organisations, such as the Neurodiversity Centre in Paarl, partner with ABA organisations on projects even though they do not support ABA themselves.
Incredible Minds Adaptive Learning Centre in Durban will not collaborate with anyone who does ABA.
The Sisu Hub and Ligno Academy likewise do not support ABA.
Some clinical professionals (such as Speech & Language Therapists and Occupational Therapists) do not publicly declare their opposition to ABA, as they are concerned that they may not receive referrals if they do so, or that they may lose existing clients who are in ABA. Others have found that being outspoken against ABA has gained them the trust of parents who seek solutions for their children that autistic people themselves support.
A final thought
The first non-speaking author quoted above, Ido Kedar, learned to communicate his throughts via a letterboard, as did a number of the others quoted here. The letterboard is held in position by a parent, therapist or aide. In the early stages of learning, there may be a lot of prompting to develop accuracy of movement, hence the name Rapid Prompting Method. Some newer methods, such as Spelling to Communicate, also make use of letterboards. Prompts fade as the autistic client perfects their skill.
Ido has been the victim of scathing attacks by promotors of ABA. One of them claimed that his words were not his own, but that he was trained like a horse to merely appear clever. Ido realised that these invalidations would continue to plague him unless he developed the ability to type independently, which he eventually did with the help of a therapist.
To this day, though, disabled people like Ido who have high support needs are silenced by powerful people in the multi-billion dollar ‘behavioural health industry’ (as investors call it) and by well-meaning therapists, parents and teachers who fall for ABA and become its foot-soldiers. Many never imagine that non-speaking autistic people may have something to say, and prize the few nonsensical words that emit from their mouths whilst refusing to believe that something very different and far richer lies within.
Human dignity does not reside in the ability to make eye contact, to move fluidly, to speak, or to live alone.
Human dignity most certainly does not reside in speaking over non-speakers in defense of ABA.