From Chapter One: On Autistic Humanity
The word “joy” is seldom associated with autism. So far as I can tell, the emotion itself has never been studied by researchers on this population. But autistic people themselves write frequently about the intense delight and deep pleasure they find in their special interests, in the sensory world around them, and especially in the practice of “stimming” (short for “self-stimulatory behaviors,” also known as “repetitive behaviors”—one of the hallmarks autism, according to the DSM-5). Here is Julia Bascom, in a blog post that has circulated widely within the neurodiversity community:
One of the things about autism is that a lot of things can make you terribly unhappy while barely affecting others. A lot of things are harder.
But some things? Some things are so much easier. Sometimes being autistic means that you get to be incredibly happy. And then you get to flap. You get to perseverate. You get to have just about the coolest obsessions. . . . It’s that the experience is so rich. It’s textured, vibrant, and layered. It exudes joy. . . .Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious.
The very intensity of the autistic experience—the heightened sensory experience, the deep focus on special interests, the broad awareness of multiple stimuli—can cause considerable distress when beyond the individual’s control. Yet it can also give rise to astonishing experiences of beauty, delight, sensual pleasure, and joy, if a person can make use of that experience for her or his own ends.
Photo by Jennifer White-Johnson in her post “Autistic Joy as an Act of Resistance” on the Thinking Person’s Guide to Autism blog.
From Chapter Two: Early Intervention
. . . as autism diagnoses increased from the 1990s on, so too did demand for [Applied Behavior Analysis] services. Parents were told that their newly-diagnosed children needed early intervention and that ABA, as practiced by Lovaas and other academics, was the most effective treatment for autism.
At that point, ABA began to move beyond university centers into a rapidly growing number of for-profit treatment centers offering therapy to meet the growing demand. At the same time, applied behavior analysis became not an academic specialty, but a profession, with the Association for Behavior Analysis International accrediting academic programs, and the affiliated Behavior Analyst Certification Board offering certification to the graduates of those programs who passed the required exams. Today large ABA corporations offer franchising opportunities to local operators, the ones who actually treat clients. In 2016, the industry generated $1.85 billion in profits, with the average center grossing $821,000/year. As one franchising company put it: “ABA centers are an extraordinary growth opportunity for franchisees. A growing patient pool and increasing demand for treatment assures a profitable industry.”
From Chapter Three: Education
Children end up in special education for many reasons—often behavioral reasons, that have nothing at all to do with intelligence. Bright children may spend years in these classes hearing basic arithmetic facts or the names of colors repeated over and over, while learning nothing substantial that might help them later as either workers or citizens. Ido Kedar, another non-speaking autistic who endured this kind of non-teaching in his early years, fiercely criticizes the thinking behind these practices:
The assumption that people with severe autism all have impaired thinking has resulted in the underestimating of the true abilities of thousands of individuals, lack of adequate educational opportunities, isolation, loneliness, boredom, frustration, hopelessness, and a life of entrapment within one’s own body. This price is too high.
Ido Kedar on his Ipad