April is Autism Acceptance Month, formerly known as Autism Awareness Month. Autism Acceptance Month is meant to highlight the issues affecting people with autism spectrum disorder (ASD) and their families, educate the public on support services, and celebrate and destigmatize the perspectives of those living with ASD.¹
According to the Centers for Disease Control and Prevention (CDC), 1 in 36 children in the United States had been identified as having ASD as of April 2023.² Given the prevalence of ASD, encouraging education, providing resources, and working to remove the stigma of autism becomes all the more important.
As it has been for the last several years, the theme for Autism Acceptance Month 2024 is “Celebrate Differences.” This theme was created to promote acceptance and provide connections to necessary support and resources.³
Autism Awareness vs Autism Acceptance
As described in detail below, over the last several years, Autism Awareness Month has been recast as Autism Acceptance Month. The change in name was made to shift the emphasis away from the stigmatizing perspective of autism as an illness and its limitations to the importance of accepting autism as a natural part of the human experience.4 The phrase autism awareness highlighted awareness of the condition itself, whereas autism acceptance fosters understanding, inclusion, and celebration of individuals with autism.4
The History of Autism and Autism Acceptance Month
Over the last century, the concept of autism was developed and reformed as researchers and clinicians learned more about the condition. What is the history of autism as a diagnosis? And when did Autism Acceptance Month begin?
History of Autism
Autism was first coined as a concept in 1911 by Eugen Bleuler, a psychiatrist who also created the concept of schizophrenia.5 Bleuler had initially defined it as a symptom of severe schizophrenia, characterizing it as fantasizing and hallucinating in an attempt to avoid certain realities.
In 1943, psychiatrist Leo Kanner of Johns Hopkins University used the term when describing a psychiatric disorder that, while symptomatically separate from Bleuler’s initial definition, he still compared to schizophrenia. Kanner described children with this disorder as having obsessiveness and echolalia, as well as having a better relation to objects than to people. He suggested that these children used language in a particularly literal manner and struggled to physically relate to others.
The characterization and definition of autism continued to develop in the decades after, though not always accurately. In the 1950s and 1960s, psychologist Bruno Bettelheim attributed autism in part to “refrigerator mothers,” or those who did were cold and distant.6 During the 1960s, Mildred Creak put together a committee of fellow psychologists to argue on nine key features of a what they found to be a pediatric schizophrenic condition, with Creak arguing that a consensus on diagnostic features was needed to better understand and recognize the condition.5 These features included impairment of emotional relationships with people and acute anxiety.
The second edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) was published in 1968 and referred to autism as a form of pediatric schizophrenia involving a detachment from reality.6 Over time, though, the condition was understood to be related to communication and development. Autism was effectively extricated from any relation to schizophrenia, a change reflected in the DSM third edition in 1980. Here, the category of childhood schizophrenia was replaced with pervasive developmental disorders and autism was removed as a symptom of adult schizophrenia.5
The 1987 revision to the third edition DSM altered the concept of autism further, broadening the definition in a way that would lead to its categorization as a spectrum in the fourth edition in 1994.6 This spectrum included conditions referred to as Asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder-not otherwise specified, which was first introduced in the third edition.
While autism disorder was defined by an impairment in social interaction, repetitive and restrictive behaviors, and delays in functioning, Asperger’s required that there was not a significant delay in language development.7 In addition to language delays, impairments for autism could include poor eye contact, trouble maintaining conversations, and a lack of imaginative play. Interests and repetitive behaviors may be particularly rigid and intense.
By the 5th edition of the DSM in 2013, Asperger’s and childhood disintegrative disorder were merged with autism by the DSM into the wider-spanning “autism spectrum disorder.” This created one diagnosis that acknowledged a spectrum of symptom severity. Symptom severity specifiers were added to describe the level of required care for a patient with autism spectrum disorder, and categories for diagnosis were reduced to impairments in social interaction and restricted/repetitive behaviors.
As the understanding of autism has evolved and expanded as a diagnosis, more people worldwide have been diagnosed with autism spectrum disorder as well as other developmental disorders. In April 2023, the CDC estimated that 1 in 36 children were identified as having autism spectrum disorder in 2020; the estimate for the year 2000 was 1 in 150 children.² The CDC also claims that in children aged 3 to 17 years in the United States, diagnoses of autism spectrum disorder increased from 1.1% in 2009-2011 to 2.5% in 2015-2017.8 Overall, from 2009 to 2017 it was estimated that 1 in 6 children in that age range were diagnosed with a developmental disability.
History of Autism Acceptance Month
As the definition of autism progressed, charities and organizations set out to promote awareness of the condition. This dates back to the 1970s when the National Autism Society first designated April to be, at the time, Autism Awareness Month.9
In 2008, the United Nations General Assembly unanimously decided to declare April 2nd as World Autism Awareness Day in an effort to highlight what is needed to help people with autism spectrum disorder lead their fullest lives.10
In developing these days and months, some organizations began to consider how the phrasing of “autism awareness” sounded and whether it was the best way to describe the intent of the month. In 2011, the Autism Self-Advocacy Network began referring to April as Autism Acceptance Month, promoting not just education and awareness but also understanding and respect for people with autism spectrum disorder as people capable of living full and meaningful lives.4
This phrasing, which focused on embracing those with autism spectrum disorder instead of mere awareness of the condition, started to gain traction among other organizations as well. This culminated in the Autism Society of America first using Acceptance in place of Awareness in 2020 and encouraging media follow suit in 2021.
The Impact of Autism Awareness and Acceptance
Societal awareness and acceptance have affected not just the amount of support received for autism spectrum disorder, but the terminology used to describe it. In 2006, the Combating Autism Act was enacted to provide funding for autism spectrum disorder research, screening, and treatment. In 2019, an amendment to the Public Health Service Act to enhance autism programs and research was named the more accepting Autism Collaboration, Accountability, Research, Education, and Support Act of 2019 (Autism CARES Act of 2019).¹
In promoting acceptance and further research into autism spectrum disorder, the quality of life in those on this spectrum may hopefully improve. A 2018 study in the Journal of Autism and Developmental Disorders suggested that experiencing acceptance may benefit mental health, while lack of acceptance may correlate to depression and stress.¹¹ Acceptance from people around those with autism spectrum disorder also improved self-acceptance, which correlated with greater self-esteem and lower depression.
