Today’s incoherent White House press conference underscores how important it is for autism parents to understand the nature of science. When Shahla and I wrote our book, Responsible and Responsive Parenting in Autism: Between Now and Dreams, we thought that science literacy was so important that we made that the first chapter of the first section.

I’m giving away the text below, but throughout our book we boost scientific literacy in autism parenting — more vital now than ever. If love someone with autism, please buy our book for their caregivers.

In the beginning

…with your courage and with your compassion and your desire, we will build a Great Society. It is a society where no child will go unfed, and no youngster will go unschooled.
– Lyndon B. Johnson

During the 1960s, President Lyndon B. Johnson declared a war on poverty, racism, and ignorance. The subsequent initiatives were concentrated in education and public human service reforms. Experimental psychologists, among other groups, responded to society’s call for change. These psychologists had curious natures, big hearts, and believed in change. Their good work set a new path for understanding human development and changed the world we live in, particularly for people with autism and their families.

The zeitgeist of this call for a Great Society reflected both hope and action to make the world a better place. The early experimental psychologists (later called operant psychologists, behavior scientists, and applied behavior analysts) were among the Great Society’s trailblazers. They ventured into institutions where no one else cared to go. They believed that change was possible for the people whom the rest of society had abandoned and forgotten. Using scientific methods, they discovered and demonstrated meaningful change. The science of applied behavior analysis advanced some of the highest forms of learning about ourselves and the world around us.

To understand applied behavior analysis, it is helpful to start by acknowledging the general nature and limitations of science. Scientific knowledge and findings bring new possibilities and meaning to our lives, but that knowledge also has parameters.

Scientists build knowledge in a progressive, intentional way. They direct their search with purpose and a deep regard for collective understanding among other scientists. In any discipline, scientific understanding is in a constant state of reflection and change. After splitting the atom, for example, physicists are diving ever deeper into the nature of matter.

Scientists use formal systems of study in their search for knowledge. This formality allows them to work collectively, using methods and rules to detect patterns in nature. Their methods and rules also guide their thinking about those patterns, what the patterns might mean, and how the patterns relate to one another. This formality, for example, allowed physician David Ho, an HIV researcher, and mathematician Alan Perelson to team up to solve a pernicious problem: the virus’s drug resistance. They discovered that a three-drug cocktail helps patients live long lives and avoid AIDS, the late stage of HIV infection.

The more that any science moves into real life, that is, the more it is applied, the more it can improve the well-being of people and society. The basic research into the nature of the HIV virus, for example, jump-started the applied research that allowed the quick development of effective COVID-19 vaccines.
In human behavior, applied behavior scientists develop methods to understand how people behave when changes occur in physical or social environments. They also study the issues that matter to humanity right now. In this work, they are obliged to build knowledge and improve conditions for the people who need the benefits of that research in the first place. In other words, ethics and science are in a constant, intertwined dance.

Science is both wonderful and frustrating. Scientists learn great things, but the knowledge always comes with more uncertainty. In addition, the methods used to gain that knowledge have sometimes produced pain and trauma. For example, evolutionary biology produced some of the knowledge to develop COVID-19 vaccines, but the work also produced eugenics (which promotes selective breeding of human populations to change genetic composition). Modern obstetrics allows for the healthy delivery of twins, but many practices were learned through experimenting on the reproductive organs of Black enslaved women who received no anesthesia.

Discoveries about the autistic brain reflect basic research with a dark history, too. In recent decades, several families have selflessly donated brain tissue after losing their autistic loved one. The information helped reveal patterns that led to scientific discoveries after researchers compared the tissue to a world data bank—a data bank of brain tissue first built by doctors of the Third Reich.

Similar tensions have emerged in autism intervention. These tensions revolve around identifying what behaviors should be changed and why, and under what conditions. Both science and society are negotiating and understanding how to proceed so that the work retains dignity, fosters well-being, and balances the needs of individuals and communities.

These realities remind us that scientific discovery is both a social and political act, and each scientist’s pursuit comes in its own social context. Why does this matter? To live and thrive in our sophisticated world, we benefit from understanding science and how it progresses and that includes the science around our child with autism. As we learn new things about the world of autism and begin to make decisions for our child, we will find much evidence, promise, discussion, debate, anger, and trauma. It’s confusing, so we may be easily lured away by the person or group that says they have the answer.

In the midst of this we can remember that good professionals rely on families to learn, too. Clinicians can apply the scientific method to their practice, following both systematic rules and ethical responsibilities. Parents have information that can guide this applied science, to ensure that their child is on a path to become the architect and agent of their own life to the greatest degree possible and balance their rights and responsibilities as they grow up in the community.

Looking at the early studies in autism can elicit both smiles and shudders. The first study that showed true possibilities involved a young autistic boy named Dicky. The life that Dicky and his family experienced before treatment was harsh: severe distress, a lot of medication, probably very little joy, and Dicky’s possible removal from home. Taking one set of goals at a time, operant psychologists Montrose Wolf, Todd Risley, and Hayden Mees at the University of Washington worked with Dicky in the early 1960s. First, they collaborated with his family and considered what was likely to improve his life as well as what was making his life difficult. Dicky was not reduced to a label or diagnosis to be treated. He was a child with things to learn and things to change. Their work was scientific: they conceptualized, controlled, and documented the work they did and the progress they made. During the intervention, Dicky initially spent a lot of time in seclusion as a consequence for some of his behavior (shudder). He was also gently guided, step by step, to wear glasses that prevented him from going blind (smiles). Even in the context of a new and somewhat crude science, a kind of miracle occurred in Dicky’s life. Dicky and his family found joy. Together with family and professionals, this young boy forged an independent, happy life, free from the harsh ways of institutional confinement. At the time, people had thought such an outcome was impossible.

Since that time, researchers have discovered ways to reduce both distress and the use of seclusion as well as to increase the time spent in quality teaching. Science progressed. In its collective and intentional way, science has helped us learn that a child’s tantrum is a form of communication. Dicky had tantrums. The professionals and parents worked with Dicky step by step to help him communicate, thereby reducing the conditions that left Dicky hurting himself. Applied behavior scientists have since built a body of knowledge that develops ways to communicate, rather than relying on punishment to reduce problem behaviors. We’ve come a long way.

Yet, science remains political. Some behavior analysts have been paid to stop autistic children’s behaviors that bother people. Because these practitioners were kind souls, they spent significant time figuring out how to do that in a loving way. But our society does not place much emphasis on building new behaviors until there is a problem. We often wait and respond to a problem, rather than working toward a dream. That means that systematic knowledge of how we shape complex language and make friends has not developed as rapidly as how we reduce problem behavior, even though this is part of what early researchers were learning. That’s on us, as a society. We need to be part of the evolution of what science studies and learns to change.

Still, the pioneering work with Dicky set the precedent for a particular way of having hope and making progress. After the 1964 publication documenting Dicky’s progress, a flurry of determined activity followed in the late 1960s and the 1970s. Behavior scientists replicated and extended the first experiments with more experiments. They developed additional, more powerful ways to change behavior for the better. Researchers determined which behaviors to target and how and when to change them to affect the course of a child’s development. Starting with Dicky in 1964 and culminating in 1973 with key findings by O. Ivar Lovaas, Robert Koegel, James Q. Simmons, and Judith Steven Long, scientists demonstrated that children with autism and other disabilities could learn.

Until the early 1970s, children with autism and other disabilities were often institutionalized. Television journalist Geraldo Rivera broadcast a jarring exposé nationwide in 1972, calling these institutions “the last great disgrace” of human civilization. A year later, in 1973, Lovaas and his colleagues demonstrated the power to change behavior for the better in many children. In one of the sadder notes from this period, they also showed that the progress disintegrated when the children returned to institutional life. Most of the children lost nearly everything they had gained.

Then came Lovaas’s breakthrough study published in 1987. Lovaas and his students revised the protocols and procedures from the earlier studies. They worked with younger autistic children, and they worked with intensity and vigor. They involved the children’s parents. They worked for hours every day, wherever the children were, whatever they were doing, and whomever they were with. In other words, they made the behavioral intervention as pervasive as the difficulties.

In 1996, Catherine Maurice’s book Let Me Hear Your Voice increased popular understanding of this new kind of intervention. She explained the research by describing, with detail and nuance, the work with her two children diagnosed with autism. Maurice sought information and allies when her children were preschoolers. Therapists came to their home for many hours each day to work with them on hundreds of skills, including learning to imitate, to speak, and to use the toilet. The therapists responded to the children with warmth and enthusiasm as they systematically planned small steps of rapid progress. They also worked with the family.

When her book debuted, readers were astonished by the outcomes possible for children with autism. Maurice acknowledged Lovaas’s pivotal role in charting the possibilities, even as she had reservations about some of the methods. Because she had written her story in a way that allowed people to better understand the science and practice of applied behavior analysis, the book created a broad demand for autism services, a demand that has continued. That demand, in turn, created a marketplace.