History
The history of autism spectrum disorder (or ASD) is as complex and controversial as the condition itself. ASD is a neurodevelopmental condition that was first identified in the 1940s by Leo Kanner, an American child psychiatrist, and by Hans Asperger, an Austrian pediatrician. Though it was originally believed that the two physicians developed their ideas separately, recent research by Steve Silberman shows that Kanner helped bring Asperger’s Jewish colleague Georg Frankl to the United States from Nazi-occupied Austria. The two of them worked together for a time at Johns Hopkins University, along with Frankl’s wife Anni Weiss, another colleague of Asperger’s. In his book NeuroTribes (2015), Silberman says that Kanner “never acknowledged Asperger’s contribution to the field – a fact that has puzzled autism scholars for decades” (p. 168). Chown and Hughes (2016) believe that “Kanner was aware of the work of Asperger, as he had supervised Frankl (and Weiss)…, and it therefore appears that Asperger identified autism before Kanner” (p. 2271). Robison (2017), however, believes that “there was no impropriety in the near-simultaneous appearance of the Asperger and Kanner papers. Kanner and Asperger were both influenced by Frankl” (p. 868). In any case, Asperger’s work would not be published into English until 1981, when British psychiatrist Lorna Wing and her husband John discovered his work and subsequently translated it, so Kanner’s ideas shaped the earliest conversations about autism in the English-speaking world.
Kanner’s research was based upon his studies of children at Johns Hopkins University. As Baker (2013) notes: “His case histories are replete with vignettes of what we now think of as classic autistic behavior: children who appeared oblivious to the presence of others, lost in a bizarre world of ritual and strange relations to objects” (p. 1090). As quoted by Berger (2013), Kanner distinguished two main attributes of what he referred to as infantile autism: a “powerful desire for aloneness” and an “anxiously excessive desire for the maintenance of sameness” (p. 10). These remain key factors in diagnosing autism to this day. The 5th and most recent Diagnostic and Statistical Manual of the American Psychiatric Association (2013) states that: “In addition to the social communication deficits, the diagnosis of autism spectrum disorder requires the presence of restricted, repetitive patterns of behavior, interests, or activities.” However, the causes of autism were not well understood. Kanner at first believed that cold, emotionally distant parenting played a large role in causing autism, a belief that was further championed by Dr. Bruno Bettelheim, a concentration camp survivor who became well-known for his treatment of autism in the 1950s and 1960s in the United States. Bettelheim compared the behaviors of children with autism to that of prisoners in the concentration camps and that of mothers to the prison guards. Unfortunately, these beliefs, which were eventually disproved, led to decades of confusion and disagreement about the best way to treat autism or even to diagnose it. Donvan and Zucker (2016) note that: “There was no biological marker for autism (then or now): it could not be determined by a blood test or confirmed by a cheek swab. It could only be diagnosed through the observation and interpretation of a person’s behaviors, which meant it was next to impossible to avoid subjectivity in judgment” (p. 283). Though observation of behavior is still the primary diagnostic tool, researchers still cannot pinpoint any one direct cause of autism. It is understood, however, to be a lifelong, neurobiological condition that exists along a spectrum of both deficits and abilities and is often linked to other neurodevelopmental conditions such as ADHD and epilepsy.
The idea of an autism spectrum came from Lorna Wing, the British psychiatrist who was responsible for the translation and proliferation of Hans Asperger’s work. However, according to Donvan and Zucker (2016), she never meant for his ideas to lead to a separate diagnosis of Asperger’s syndrome; instead, “Wing brought attention to Asperger’s boys for one reason only: to bolster her idea of the spectrum” (p. 323). They go on to say that “as an activist determined to get services for as many people as possible, she adamantly opposed breaking up the spectrum into multiple diagnoses” (p. 323). Wing’s idea of an autism spectrum changed the approach to autism in a fundamental way. Kanner had worked only with children who had little, if any, verbal communication and were intellectually disabled. Asperger’s work had been with verbal, highly intelligent children. Wing believed that all of these children had the same condition. In 2011, the American Psychiatric Association agreed with her, when it subsumed Asperger’s syndrome under the umbrella of autism spectrum disorder in the DSM-5.
For the first half of the twentieth century, the only treatment option for autistic children was institutionalization. In the 1960s, O. Ivar Lovaas, a psychologist at UCLA and a proponent of B. F. Skinner’s behaviorism, popularized a treatment for autism called Applied Behavior Analysis or ABA. Lovaas was unconcerned with the causes of autism; instead, he attempted to discourage negative (autistic) behaviors and encourage positive (non-autistic) behaviors through a series of punishments along with positive reinforcements. However, his treatments (which included electroshock therapy) were controversial. Around the same time, psychologist Eric Schopler at the University of North Carolina was developing a program called TEACCH: Treatment and Education of Autistic and Related Communication Handicapped Children. According to Donvan and Zucker (2016), the original proposal called for “a curriculum of structured activities in structured spaces but with a student-teacher ratio of nearly one-to-one. And it would allow for tailoring of the program to the strengths of each child” (p. 235). Schopler understood that partnering with parents, attending to the child’s interests, and following a predictable routine with visual supports greatly enhanced that child’s ability to learn and to function in society.
Legislative support for the autistic community began in 1975 with the passage of the federal Education for All Handicapped Children Act (now called the IDEA or Individuals with Disabilities Education Act), which mandated that all public schools receiving federal funding had to provide equal access to children with disabilities. In 1990, the work of disability rights activists led to the passage of the Americans with Disabilities Act, which outlawed discrimination based upon disability and provided protections in other areas of society such as public accommodations and workplaces. Not long after the passage of the ADA, the neurodiversity movement began a new level of advocacy: for autistic people by autistic people. As Donvan and Zucker (2016) note, “the image of autism projected by the parents’ movement was often layered with sorrow, and rested on the premise that autism represented something gone wrong in the life of a child” (p. 515). Autistic self-advocates, however, promoted the belief that there is nothing wrong with being autistic. The Autistic Self Advocacy Network, for example, defines autism as a “neurological variation” rather than a disorder and argues for identity-first, rather than person-first, language. By referring to themselves as autistic people, instead of people with autism, they underscore the importance of being autistic to their core identities.
Current Issues and Debates
In 2018, the Centers for Disease Control and Prevention reported that 1 in 59 children in the United States had a diagnosis of autism spectrum disorder. It is essential, therefore, that autistic people and their families and caregivers have access to quality information. This is complicated in age of the Internet, with the proliferation of information of all kinds and the accompanying difficulty in distinguishing accurate, evidence-based sources from inaccurate ones. Also, the information needs of autistic people and their parents and caregivers change over time. A study by Gibson, Kaplan, and Vardell in 2017, for example, found that “parent information needs varied with the ages of their children, and parents of children in the same age group shared similar information needs” (p. 2192-2193). However, though information regarding autism in young children is plentiful, there is a dearth of evidence-based information regarding autism in adolescence and adulthood. This can be partly attributed to Kanner, who focused on autism solely in childhood, but it can also be attributed to the lack of options that existed for autistic people before the passage of the IDEA and the ADA. It isn’t that autistic adults didn’t exist; it was that they were locked away. Donvan and Zucker (2016) claim: “Without question, the institutions swept up many of the people who today would be diagnosed with autism, at least up into the 1970s” (p. 148). Since recent research by Woodman, Smith, Greenberg, and Mailick (2015) has shown that “maternal positive remarks and inclusive educational settings led to improved functioning over the long term for individuals with ASD” (p. 186), institutionalization seems like the worst thing that could have been done to autistic individuals. More studies are needed to determine how the symptoms of ASD change across the lifespan and which types of supports are best associated with positive outcomes in adolescence in adulthood. However, there are some resources that can help autistic children and their families and caregivers to bridge the divide between childhood and adolescence. These will be listed in an attached resource guide.
