My partner and I have three-year-old twins, one of whom is autistic. I am an undiagnosed autistic adult who went through a lengthy process of self-discovery beginning before my son was himself diagnosed. He was both our initial introduction to autism as well as the broader autistic community. Like so many adults, I grew up at a time when autism was not understood nor diagnosed like it is today.
Like all new parents, we learned through a process of self-education and experience, not having any previous knowledge of the system in place for diagnosing disabilities and the various services available to assist children and their families. Our son was born with various developmental delays that became most obvious around six months. He was also born with a medical condition called metatarsus adductus that created additional difficulties in his learning to walk. We started on the pediatric therapy circuit with physical and occupational therapists when he was just over a year old. A few months in, one of the therapists asked us about an autism screening. Making a long story short, this was our mostly benign introduction to the Early Intervention system. It would take time for us to fully understand what this system was and how it operates. Some will not necessarily even see it as a “system” per se, as it functions differently in different states and services aren’t always immediately available depending on your geographic locale. I do refer to it as a system because despite how decentralized it may be from one place to the next, it does operate under a broad framework of disability services with therapies that don’t vary in content so much as in availability. Another thing that unites Early Intervention and its therapies is the foundation of ideas about disability in our society from which it evolved over the last several decades. It is this “foundation,” as I’m calling it here, and the ideas that spring from it that are the subject of my argument. At its simplest, I’m arguing here that we at all times situate Early Intervention in its proper context, and this necessarily extends to Applied Behavior Analysis, a “therapy” that targets unique autistic behaviors for erasure.
At the time we were first introduced to Early Intervention services, I remember being fascinated with my son’s obviously different behaviors, at least when compared with his twin brother. His desire to play by himself was described as lacking social curiosity, something we were told every toddler is supposed to develop normally. He would not respond to his name. He would hold his hand out in front of his eyes and stare while moving his fingers around. He was particularly focused on parts of toys, like wheels on a car, and would happily spin them. All of this was a concern for therapists. His behavior was frequently referenced in a way that felt overwhelmingly focused on everything he could not do. And yet if any of the therapists had asked me what my first thought was upon observing him, I’d say he seems a lot like me, not “he should be playing with his brother” or “he should be responding to his name” or “he should be playing with toys appropriately.”
But this experience was new to us. Who am I to question any of these people who obviously know what they’re talking about? Despite the constant focus on his deficits, I found myself at ease with his behaviors, seemingly unconcerned about what it looked like to other people. I marvelled at his ability to focus on things and his fascination with the world around him, to the exclusion of all else at times. It all felt strangely familiar to me. I felt as though he fit right in with my own socially awkward and introverted behaviors that until then I hadn’t fully understood, years of chronic depression apart.
Eventually I reached a point where I accepted his autism well before his visit to the pediatrician that would diagnose him. At no point did I ever feel like we had embarked on some tragic and regrettable journey of childhood disability. Like all parents, we want our children to do better than us. We want our children to grow up in a better world than the one we live in now. But having a disabled child throws a wrench into that–or so that is what far too many parents are led to believe. Go online to learn about autism and children with other disabilities and tell me it is not easy to walk away feeling like you’ve been burdened with a life you never asked for. Over time, it became clear to me that the Early Intervention system actually quite often feeds on these fears. From the moment your child is immersed in this or that therapy, parents are bombarded with a sense that they must be doing something for their child. It literally feels as though putting therapy off for a matter of weeks or months to understand what it is your child really needs is tantamount to stifling their development as every day lost counts. Much of this is based on the science of brain plasticity, the early flexibility of the brain that ostensibly makes autistic children amenable to “improved” developmental outcomes. I’m leaving aside the validity of the science behind this as I’m not a neurologist. My concern is with the idea that there is necessarily something about an autistic brain that requires this kind of immediate therapeutic intervention to potentially alter its would-be development. This idea hints at the framework, the umbrella, so to speak, that all of Early Intervention services operate under. The first issue that arises is the pathologizing language therapists use which extends well into the public school system with IEP assessments and “special needs” educators. You’ll learn the Early Intervention buzz phrases like “developmental window” and “maximise potential” and “inclusion ready.” Interestingly enough, none of this is based on what autistic children actually need as autistic children. The starting point for Early Intervention is the need for several hours weekly of therapies to assist your autistic child in reaching their full potential despite their diagnosis. So “maximising potential” starts with the premise that your autistic child doesn’t quite meet the expectations set by non-autistic, or normally developing children, and that therapy can help them get as close to that neurologically-typical “bar” as possible. The “developmental window” refers to a short “evidence-based” period of time that your autistic child has to reach said “maximum potential,” or to achieve as much of those neurologically-typical expectations as possible. That autistic children may in fact have alternative “developmental windows,” like, shockingly, autistic ones, is evidently not up for debate in Early Intervention. That autistic people process the world in a completely different way from the neuromajority and that therapy should respect this first and foremost is almost anathema to Early Intervention. It became obvious to me that the problem is not necessarily with each individual therapist, but the training they’ve had pounded into their heads by a way of understanding autism that is at odds with autistic people existing as autistic people.
In and of itself, autism is a naturally occurring neurological difference that presents with a variety of characteristics and abilities and disabilities; it is at its simplest a different way of processing the world. But the disabilities that autistic people confront throughout their lives originate firstly with the world around us, built as it is from the ground up to accommodate the needs of those born with “normally” functioning brains. The latter is actually a very short description of the basis on which the social model of disability arose, an alternative way of seeing and understanding disability. Early Intervention, however, arose out of the antithesis of the social model: the medical model, which to this day sets the parameters of “acceptable” discourse around autism and disability.
As part of his diagnostic testing we brought our son to a state-run disability services facility for assessment. A year later, as part of his entrance to a “special needs” pre-K program at three years of age, we went through similar assessments. The battery of questions in each assessment all followed a similar theme: this is what a normal child is supposed to be able to do, and we need to know which of these normal behaviors your child cannot do or perform “appropriately” for his age. Children are then put into a seemingly harmless environment filled with toys so that an adult can assess his or her ability to play “appropriately,” to listen “appropriately,” and to behave “appropriately.” Admittedly, it hadn’t occurred to me to sit in a chair at home with a clipboard and observe my son enjoying himself in all the “wrong” and “inappropriate” ways possible. Following these early assessments we were told about Applied Behavior Analysis, an experimental therapy for autistic children that bills itself as one of the best ways to achieve “classroom readiness” if started early and done for 20-40 hours weekly.
ABA operates under the same framework as the Early Intervention system, and some will consider it to be an essential component of it. ABA has been pushed by many disability professionals, therapists, and even our son’s pre-K teacher. Our Early Intervention therapist told us about the ABA options in our area, and we decided to have a so-called “line therapist” come into our home to observe what it is they’d be doing. At the same time, I was researching heavily into exactly what ABA is and what it bases its so-called “science” and “evidence” on. I wanted to be clear on what it is they are selling. I went onto the websites of various ABA facilities and found lengthy descriptions and pictures of children having fun surrounded by smiling therapists. I saw a picture of a young autistic adult who had successfully gone through ABA and graduated college. This is all standard advertising that any product or service will use to draw in customers. That was an immediate red flag for me. I see right through advertising. Nevertheless, we allowed this “line therapist” who had no relevant training otherwise outside of a high school diploma to come into our home and observe our son in his “natural environment.” Two months later, we were on our third therapist as the first one took on another position at the facility and the second one quit three or four sessions in. They came to our home for two-and-a-half hour sessions twice weekly. The very last session I observed the therapist requiring our son to cease a certain “undesirable” stim behavior in order to obtain an M&M. That was the end of it. I had already done so much reading into ABA at that point that I was ready to cancel it immediately regardless.
Adult autistics who went through ABA have produced a lengthy literature on their experiences that anyone can go online and read, and I highly recommend you do so. Parents of autistic children and some ABA professionals have also spoken out. ABA bills itself on the “science” and “evidence” spearheaded by Ivar Lovaas and his experimentation on autistic children going back several decades. They use the principles of behavior research of B.F. Skinner as well as a host of other researchers who completed various later studies. ABA practitioners frequently dismiss the experiences of autistic adults as being representative of a failure of proper ABA implementation. ABA facilities argue in defense that they have moved beyond the less savory practices of their forebears. You’ll see variations on the following theme in countless blogs written by autistic adults or parents who stopped ABA for their child: a Board Certified Behavior Analyst or other ABA “professional” telling autistic people or parents to “do their research,” that ABA does not harm autistic children, at least not anymore. Parents will chime in with “I’m sorry you had such a bad experience with ABA, but we have been very successful and my daughter loves it…” It is hard for parents who don’t know any better to discern who is right and who is wrong here. The purpose of this is not even to answer that question but rather to take a step back and examine the context that is so frequently left out of discussions around Early Intervention, ABA, and its claims of being “scientific.”
It was child psychologist Leo Kanner who allegedly “discovered” autism in the 1940s, giving it a name, his research claiming rather consequently that autism was a rare childhood disorder (I say “discovered” in the same sense that Columbus “discovered” the Americas: in both cases people already existed and had for millennia before the “discoverer” showed up.) Several decades later, British psychiatrist Lorna Wing, mother of a so-called “low-functioning” autistic daughter showed conclusively that it was Austrian pediatrician Hans Asperger who found autistic traits and characteristics to more accurately exist on a “spectrum.” Wing founded the term Asperger’s Syndrome which dramatically changed the way psychologists and researchers understood and diagnosed autism, though change didn’t exactly come overnight. Despite this big leap forward, the decades-long damage from Kanner was done: autism was understood as a rare disorder primarily affecting children. This is the framework that nurtured the ideas that we see pervading Early Intervention services, ABA, and the general discourse on autism. Autistic people were not included in discussions around autism decades ago, and they are still today often dismissed as being capable experts on their own lives. Organizations like Autism Speaks have never needed actually autistic people in positions of influence as they operate within a strictly medical framework that sees autism as a disease in need of “treatment” and even a cure. Early Intervention and ABA similarly don’t consider the perspectives of autistic people because they operate under the same framework.
As for the “science” and “evidence” of Early Intervention and ABA, I have a few thoughts to share. If the reader takes away anything at all from my argument here, let it be this: “science” and “evidence” do not stand above and apart from society and history, but are necessarily shaped and influenced by the ideas that pervade it, and we live in societies of immense inequality.
Early Intervention services, ABA, and “special education” all operate in a framework that sees disabled people as broken precisely because they arose from a foundation–our present social and economic system–that values the able-bodied above all else.
That is the context that all science and all evidence have to be situated in. To be sure, science and evidence are vital. To give just one example, it is because of science that we know that the MMR vaccine does not cause autism. Other ideas in the not-so-distant past have also claimed the mantle of science, like Phrenology, whereby the explicitly racial slavery of Africans in the “New World” was justified based on invented “differences” found in their skulls and brain structure. Eugenics was also considered science, with the “evidence” justifying forced sterilization programs and later influencing Hitler’s genocidal Holocaust. “Science” and “evidence” are still today used to justify claims of racial inferiority: see The Bell Curve by Richard Herrnstein and Charles Murray. Climate change deniers also use the prestige of “science” and “evidence” to justify their claims, though of course most of them have interests in the archaic but overwhelmingly profitable fossil fuel industry.
I’m not claiming that ABA is anything like Phrenology or a Eugenics program. The point I’m making is that “science” and “evidence” cannot be separated from the material world in which we live. By the turn of the 20th century, the US Army had successfully prosecuted its war of extermination against the indigenous peoples of the Great Plains. Schools were set up for “assimilation” of Indians into “proper” American citizens. They were forced to learn English, dress like Europeans, eat European food, worship a Christian god, and pursue mainstream American careers and interests. It was believed that the “tribe” could be rooted out of the “indian.” Of course today we ask what is even remotely ethical about this? The problem is not that this is unethical, but that the definition of what is or is not ethical changes over time. Predominating ideas at any point in human history have influenced not just what “evidence” science finds, but what science decides is worth studying in the first place. For example, are LGBT people “born that way,” suggesting a genetic component to their sexuality, or does our society have pre-existing notions about which form of sexuality is right and which is wrong, leading some scientists to search for a non-existent “gay gene?” In this way, dominant ideas about autism and disability at the time necessarily shaped what “science” was seeking and the “evidence” that would spring from it. With autism, still today, standards remain low as any quack alchemist can invent a magic potion that allegedly cures autism or its worst “symptoms,” from chelation to bleach enemas and even special gluten and casein-free diets for “leaky gut syndrome.” The medical model of disability rests on a bedrock of erroneous and harmful ideas about autism that has allowed a “cure” outlook to flourish, whether it comes in the form of modern “alternative medicine” quackery, the “puzzle piece” imagery of mainstream autism organizations who put money into finding the origin of autism, or in the Early Intervention system that sees its role as fixing “broken” people.
ABA sees autism as a constellation of undesirable behaviors that not only can, but evidently should be rooted out based on the ideas of normalization that pervade the Early Intervention system generally. It uses various strategies and tactics to achieve a goal that is unmistakably one of autistic erasure to whatever extent possible. It continues to justify this on the grounds that it is “scientific” and “evidence-based.” But the “science” and “evidence” comes directly out of a period where autism was understood as a childhood mental disorder, with autistics as burdens, as objects to be experimented on, as shells hiding a “normal” person beneath, or as “damaged” versions of a “normal” child. This is the “puzzle piece” era. It makes complete sense that given the ideas about autism that pervade our society, autism “awareness,” being merely the public-relations front for the medical model, would be the first thing that parents are exposed to.
“Old” or “new,” ABA still operates firmly within the framework of the medical modelthat sees autistic people as suffering and as financial burdens to their families and society at large. Old or new, ABA therapists are never required to understand how autistic children process the world around them. The root of the behavior is not nearly as important as how the behavior affects other people first. The idea that ABA is necessary to deal only with those behaviors that impact the health and well-being of the child and caregiver, like the classic head-banging example or aggressive behavior towards a parent, is belied by the fact that autistic people across the entire spectrum have been through ABA regardless of the presence or lack of aggressive behaviors towards themselves, caregivers, or parents. There is not one aspect of autistic behavior that requires ABA intervention. This simple fact alone should suffice to expose the real agenda behind ABA: that there are other means of working with autistic children that actually respect their unique way of processing the world around them, and that ABA is concerned much more, if not solely with suppressing the needs of autistic children towards a goal indistinguishability.
Furthermore, ABA has harmed autistic people all across the spectrum, not just those with the highest support needs. ABA cannot accept autistic people as they are, because accepting autistic people means embracing the biological fact of neurodiversity. Human evolution has produced a wide variety of brains, autistic brains being one variant which further exhibits an array of different traits, characteristics, personalities, and abilities. Autistic people have existed throughout human history. Accepting neurodiversity as equal and valuable and accepting autistic people as autistic is at odds with the entire approach of ABA, and the language and behavior towards autistic ways of being by those who operate under the Early Intervention system reflects this.
They have even invented a metaphorical “yardstick” that is used to measure the degree to which autistic people resemble non-autistic people: low-functioning and high-functioning. Nevermind that these “functioning labels” are not actually real diagnoses nor are they considered helpful or even close to an accurate portrayal of the problems faced by autistic people. But remember, these ideas and the language that flows from them are considered normal, mainstream, non-controversial, because a medical model has set the boundaries of acceptable discourse on autism for decades.
If we want better for future generations of autistic people, we obviously must reject the “science” and “evidence” that says success for autistic children means faking your way through life with a pseudo-neurotypical smokescreen. The definition of “success” has to be changed to success because of her autism, not despite it. Non-autistic people cannot “rise above” their neurology, and they are never expected to. Nobody can do this. Why, then, are autistic people expected to? Why must parents love their child but “hate her autism?” Why do we constantly hear parents say that they must see their child first, not his autism? Why are autistic children expected to be able to separate themselves from the brain they were born with? These ideas go unquestioned by other parents and by therapists and special education teachers because autism is understood through a lens of pathology and the logical conclusion that flows from it: “awareness,” cure, and normalization therapies.
You cannot accept both the science of neurodiversity and the science of autism as pathology. This is not just about going after the “bad apples” of the Early Intervention system and ABA, though abusive therapists certainly need to be punished. It is the framework in which therapists are trained that is the problem. “Success” in achieving “inclusion readiness” with 40 hours a week of behavior modification beginning at age two or three is not an indication of the success of ABA or any other normalization therapy. Rather, it is an indication of just how far we have yet to go toward achieving acceptance of autistic people as autistic people. Going after the lowest hanging fruit of Early Intervention and ABA is often the only way to really reach new parents who simply aren’t certain what they should do for their child. But “bad apples” are merely a symptom: the whole tree is rotten down to the roots. New soil is required. A new foundation that embraces neurodiversity and the value of autistic people no matter their “functioning” level or support needs. From new soil the seeds of an entirely different tree can grow. We also have science and evidence on our side and I hope for future generations that we can carry it forward by always making acceptance the starting point of “acceptable” discussion around autism.