Back in the late 1970s and early 1980s, I worked at a residential facility for children with severe autism. These kids had been rejected from many other schools because, if left on their own, they banged their heads against hard objects until their skin split open, bit themselves and other people, and attacked staff members and other students. Many of the children were unable to communicate with spoken language and, as a result, used sign language or picture cards to convey their needs. It was very challenging work but also very rewarding. It was an experience I will never forget.
Today, you would be perfectly accurate in saying my former students were “on the spectrum.” Yet it is my impression that, in everyday conversation, the phrase “on the spectrum” is most often applied to people who possess all the most important abilities my former students lacked. Prior to the introduction of the spectrum concept, many of the people we most often hear from about autism might have been diagnosed with Asperger’s disorder. These people at the less severe end of the autism spectrum face important challenges, but many of them will be able to hold jobs and live independently. In contrast, a large proportion of my former students never went on to live independently and required substantial support for the rest of their lives. Yet according to the current view of the American Psychiatric Association, both groups suffer from autism spectrum disorder (American Psychiatric Association 2013).
A Brief History of Autism Diagnosis
Before there was schizophrenia, there was dementia praecox—early dementia. But in 1908, the Swiss psychiatrist Eugen Bleuler introduced the concept of schizophrenia. Bleuler’s term was derived from the Greek words schizo (split) and phrene (mind). He chose this term because he believed the disorder involved the splitting of several psychological functions, resulting in the loss of unity of the personality (Fusar-Poli and Politi 2008; Hoenig 1983; Kyziridis 2005). Of course, this framing led to endless confusion with “split personality,” a very different condition previously called multiple personality disorder and now known as dissociative identity disorder (American Psychiatric Association 2013). As part of his effort to describe schizophrenia, Bleuler introduced the “four A’s”: loosening of associations, disturbances of affectivity (emotion), ambivalence, and autism (Fusar-Poli & Politi 2008). The term autism was derived from the Greek word auto, meaning “self,” and was meant to describe an inward focus on oneself.
In 1930, Austrian psychiatrist Leo Kanner opened the first psychiatric clinic devoted solely to children at Johns Hopkins University, and in 1943 he first identified the disorder of autism, borrowing one of Beuler’s “A’s” (Adler et al. 2014). Kanner observed that there were some important differences between schizophrenia and autism. For example, schizophrenia usually involved a substantial period of normal development followed by an onset of symptoms between the ages of sixteen and thirty (National Institute of Mental Health n.d.); whereas autism was a developmental disorder starting from birth or in very early childhood. In addition, many people with schizophrenia showed a degree of recovery later in life that was not observed in autism. In the 1960s, British child psychiatrist Michael Rutter identified a number of other features of autism, including a relatively high incidence of epilepsy and a greater likelihood of intellectual and language delays (Wolff 2004). More recently, brain imaging studies have shown structural differences between the brains of people with autism and schizophrenia.
The Diagnostic and Statistical Manual of Mental Disorders (DSM) is the American Psychiatric Association’s catalogue of recognized psychological conditions, and autism did not make it into the book until the third edition, published in 1980 (DSM-III; Adler et al. 2014). In addition, the DSM-III included a second category, pervasive developmental disorder not otherwise specified (PDD NOS), intended to capture cases that did not quite fit the typical autism diagnosis. For example, it’d be applied if the onset of the disorder was later than typical for autism. Unfortunately, this category ended up being rather confusing and got even more so in subsequent editions of the DSM.
Meanwhile, back in the 1944, another Austrian physician, Hans Asperger, had published a report about a different group of patients who showed some characteristics of autism. In contrast to Kanner’s patients, these children were excessively verbal, but they talked about a very narrow range of subjects. When focused on their preferred topics, they were like “little professors,” but they also failed to recognize important nonverbal social cues. Asperger’s work failed to get much attention in the English-speaking world until British psychiatrist Lorna Wing published a review in 1981(Adler et al. 2014). Wing would go on to be responsible for two important developments in autism diagnosis: the recognition of Asperger’s disorder and the adoption of the spectrum concept.
When the fourth edition of the Diagnostic and Statistical Manual (DSM-IV) came out in 2000, it included separate diagnoses for autism disorder, pervasive developmental disorder not otherwise specified, and Asperger’s disorder, but now there was real confusion about where one condition started and another began. Furthermore, although correlation is not causation, these expanding definitions for autism and autism-related diagnoses were coincident with the increasing rates of autism, sometimes called the “autism epidemic” (Adler et al. 2014).
Finally, we arrive at the current view of autism officially introduced in the American Psychiatric Association’s 2013 edition of DSM-5. Largely due to Lorna Wing’s influence, the spectrum became the official theory of autism (Wolff 2004). In DSM-5, the three previous diagnoses were all collapsed into the new term autism spectrum disorder (ASD), completing the progression shown in Figure 1. This change produced a number of effects, but one of the most important of these was the worry that all the children who fell under the big umbrella of ASD might have different needs. Writing in the Maternal and Child Health Journal in March 2013, Roy Grant and Molly Nozyce expressed the concern that, “This change may have unintended consequences, including the possibility that the new diagnostic framework will adversely affect access to developmental interventions” (Grant and Nozyce 2013, 586).
A more specific worry about the spectrum approach has been that children and adults at the severe end would be lost in the shuffle. There are still many individuals like my former students who will require substantial support throughout their lives. Their needs are quite different from those of people formerly diagnosed with Asperger’s disorder and other forms of autism. In response to this concern, a group of parents and professionals have recently formed the National Council on Severe Autism (www.ncsautism.org). It is clear from a position statement on their website that they believe the spectrum has not served people with severe autism well: “The broadening of the construct of autism in the form of the Diagnostic and Statistical Manual (DSM-5) criteria for Autism Spectrum Disorder (ASD) in 2013, while well-intentioned, has had the effect of rendering the diagnosis essentially meaningless, as it allows for the same diagnosis to be given to wholly disparate individuals” (National Council on Severe Autism n.d.a).
In addition, the NCSA has objected to vocal activists on the opposite end of the spectrum who argue that autism is a mere “condition” and not a “disorder” and that people do not “suffer” from autism but just “experience” it (National Council on Severe Autism n.d.b). Today, many of the most outspoken autism advocates are people at the less severe end of the spectrum who have the gift of speech and may never have encountered anyone with severe autism.
A Parent’s View
Amy Lutz is the author of the 2020 book We Walk: Life with Severe Autism, a beautifully written collection of essays about her life with Jonah, the oldest of her five children. Lutz is also vice president of the National Council on Severe Autism. To get a parent’s perspective, I asked her to comment for Skeptical Inquirer on her view of the spectrum concept.
I don’t have any issues with the spectrum concept of autism per se; what has really harmed severely autistic individuals like my son Jonah is the use of a single word to describe everyone on the entire spectrum. Before the introduction of DSM-5, very mildly affected autistic individuals were typically labeled with Asperger syndrome, while those of moderate functioning often received the diagnosis of PDD NOS. It was only those who were significantly disabled by their condition that received the diagnosis of autistic disorder. DSM-5 eliminated these diagnoses, so now everyone—from law school graduates to individuals who spend their lives in diapers and helmets (to keep them from killing themselves when they compulsively smash their heads against the floor)—receives the same diagnosis of autism spectrum disorder. Furthermore, because of this conflation, many individuals in the former group now claim the authority to speak for those in the latter, even if they have never met.
To further explore her view of the spectrum, I asked Lutz whether, in her opinion, people at opposite ends of the spectrum are more properly considered quantitatively different or qualitatively different.
I really like this question, because it gets to the heart of the vitriolic debates that divide the autism community. The differences between individuals on the two ends of the spectrum are undeniably qualitative, not quantitative. It is not about being more or less social, or more or less communicative. To me, it boils down to the lack of abstract concepts that informs Jonah’s way of processing the world. He simply has no conception of life and death, past and future—never mind identity politics, autonomy, or Disability Rights. This is also why he needs qualitatively different supports than someone who is high functioning. Someone who might have been described as an “Aspie” before 2013 may have no need for specialized classrooms, sub minimum wage employment, or large, intensive, specialized residential settings. But these are essential for some individuals on the severe end of the spectrum to live their best lives, and the current trend of de-funding or eliminating them because some neurodiversity advocates consider them too “segregating” or “isolating” will only harm those most disabled by autism.
In the introduction to the DSM-5, the American Psychiatric Association authors wrote that “As the understanding of mental disorders and their treatments has evolved, medical, scientific, and clinical professionals have focused on the characteristics of specific disorders and their implications for treatment and research” (American Psychiatric Association 2013, 5). It seems clear to me that, at least for people with severe forms of autism, the introduction of autism spectrum disorder had implications that were not anticipated. The spectrum has not helped. It has fostered confusion and contributed to a lack of understanding of the needs of people with different forms of autism. It may have been intellectually satisfying to unify a number of disparate disorders under one umbrella term, but if the umbrella covers up important differences, it loses its usefulness. For the sake of Jonah, my former students, and others like them, I hope a better diagnostic system can be found soon.
References
Adler, B. Andrew, Noha F. Minshawi, and Craig A. Erickson. 2014. Evolution of autism: From Kanner to the DSM-V. In Handbook of Early Intervention for Autism Spectrum Disorders, edited by J. Tarbox, D. Dixon, P. Sturmey, et al. New York, NY: Springer, 3–19.
American Psychiatric Association. 2013. Diagnostic and Statistical Manual of Mental Disorders: DSM-5. Vol. 5. Washington, DC: American Psychiatric Association.
Fusar-Poli, Paolo, and Pierluigi Politi. 2008. Paul Eugen Bleuler and the Birth of Schizophrenia (1908). American Journal of Psychiatry 165(11): 1407.
Hoenig, J. 1983. The concept of schizophrenia Kraepelin—Bleuler—Schneider. British Journal of Psychiatry 142: 547–57.
Grant, Roy, and Molly Nozyce. 2013. Proposed changes to the American Psychiatric Association Diagnostic criteria for autism spectrum disorder: Implications for young children and their families. Maternal and Child Health Journal 17(4): 586–92.
Kyziridis, Theocharis Chr. 2005. Notes on the history of schizophrenia. German Journal of Psychiatry 8(3): 42–48.
National Council on Severe Autism. N.d.a. DSM diagnostic labels – NCSA. Online at https://www.ncsautism.org/dsm.
———. Nd.b. NCSA position statement on language, images and depictions concerning severe autism – NCSA. Online at https://www.ncsautism.org/language-and-images.
National Institute of Mental Health. N.d. Schizophrenia. Online at https://www.nimh.nih.gov/health/topics/schizophrenia.
Wolff, Sula. 2004. The history of autism. European Child and Adolescent Psychiatry 13(4): 201–8.