The language and conceptual framework surrounding neurodiversity have undergone significant evolution since the first recognition of Asperger’s syndrome to contemporary discussions about neurodivergence and neuro minorities. This evolution reflects a broader shift from the medical model of disabilities to the social model, with implications for how society understands and accommodates neuro minorities and increasingly see neurodiversity as a natural variation of humankind.

Especially autism has seen a change of language since mid last century.

Early Recognition: Asperger’s Syndrome

The journey begins in the early 20th century with Hans Asperger, an Austrian pediatrician, who in 1944 described a pattern of behavior in children he referred to as “autistic psychopathy.” Asperger noted these children had difficulties in social integration despite normal to high intelligence and language development. His work remained relatively obscure until the late 20th century when British psychiatrist Lorna Wing popularised the term “Asperger’s syndrome” in the 1980s. This marked one of the first steps in recognising that autism existed on a spectrum and that autistic individuals could have a wide range of abilities and challenges.

Asperger’s syndrome, once a distinct diagnosis within the autism spectrum, was officially removed from the Diagnostic and Statistical Manual of Mental Disorders (DSM) in its fifth edition (DSM-5), published by the American Psychiatric Association in May 2013. This decision was driven by several factors, including the goal of improving diagnostic clarity and consistency, as well as reflecting a more current understanding of autism spectrum disorders (ASD).

When and How Asperger’s Was Removed

The DSM-5, released in May 2013, marked the official removal of Asperger’s syndrome as a separate diagnosis. Instead, individuals previously diagnosed with Asperger’s were included under the broader category of Autism Spectrum Disorder (ASD).

The decision to remove Asperger’s syndrome was part of a significant restructuring of the diagnostic criteria for autism. The DSM-5 consolidated several previously distinct autism-related disorders, including Asperger’s syndrome, childhood disintegrative disorder, and pervasive developmental disorder-not otherwise specified (PDD-NOS), into a single diagnosis: Autism Spectrum Disorder. This new classification system aimed to capture the continuum of autistic characteristics and severities more accurately .

Why Asperger’s Was Removed

Diagnostic Inconsistencies: One of the primary reasons for the removal of Asperger’s as a separate diagnosis was the inconsistencies and lack of reliability in diagnosing it. Clinicians often found it challenging to differentiate between Asperger’s syndrome and other autism-related conditions, leading to varying and sometimes conflicting diagnoses. The overlap in symptoms between Asperger’s and high-functioning autism made clear distinctions difficult and arbitrary.

Spectrum Concept: The understanding of autism as a spectrum of disorders with a wide range of manifestations and severities influenced the decision. The spectrum concept acknowledges that autistic traits can vary significantly from person to person and over the course of a person’s life. Consolidating these conditions under one umbrella term, Autism Spectrum Disorder, emphasises the diversity and continuum of autistic experiences.

Simplifying Diagnosis: By streamlining the diagnostic criteria, the DSM-5 aimed to improve the accuracy and reliability of diagnoses. The single category of ASD with specifiers for levels of support needed allows for a more nuanced and flexible approach to diagnosis, recognising the individual differences in abilities and challenges among those on the spectrum.

Alignment with International Standards: The changes in the DSM-5 also brought the manual more in line with the International Classification of Diseases (ICD), which is used globally. The ICD-11, published by the World Health Organisation (WHO), similarly groups these conditions under a single category, further promoting consistency in diagnosis and research.

Impact and Reception

The removal of Asperger’s syndrome as a distinct diagnosis has been met with mixed reactions. Some advocates and individuals identified with Asperger’s expressed concern over losing a label that they felt accurately described their experiences and provided a sense of identity and community. Others supported the change, appreciating the recognition of autism as a broad and diverse spectrum.

In practical terms, the shift aimed to improve access to services and support by reducing the confusion and fragmentation caused by multiple overlapping diagnoses. The DSM-5’s approach emphasises individualised assessments and tailored interventions based on specific needs rather than diagnostic labels.

High and Low Functioning Labels

As awareness of autism grew, so did the language used to describe it. Terms like “high functioning” and “low functioning” autism emerged, attempting to differentiate individuals based on their cognitive abilities and independence in daily life.

While labels were intended to provide clarity, they often proved reductive, failing to capture the complexity of the autistic experience. “High functioning” individuals, despite their cognitive abilities, might still struggle with significant sensory and social challenges, while those labeled “low functioning” might have profound intellectual disabilities yet excel in other areas.

Emergence of Neurodivergence

The late 1990s and early 2000s saw the rise of the neurodiversity movement, which fundamentally challenged the prevailing views on autism and other neurodevelopmental conditions. The term “neurodiversity” posited that neurological differences like autism, ADHD, dyslexia, and others are natural variations of the human brain rather than pathologies to be cured. This perspective encouraged a shift from viewing neuro minorities through a deficit-based lens to recognising and valuing their unique strengths and contributions.

Neuro Minorities and Evolving Narratives

Building on the neurodiversity paradigm, the concept of “neuro minorities” has emerged, highlighting that neurodivergent individuals constitute minority groups with distinct identities and rights. This perspective aligns with the broader social model of disability, which argues that societal barriers, rather than individual impairments, create disabling conditions. According to the social model, the focus shifts to removing societal barriers, ensuring accessibility, and fostering inclusion, rather than solely aiming to “fix” the individual.

In this regard the idea that neuro minorities need to be “trained” to be more like their neuro majority peers, started to become outdated. More and more so it is recognised that it is the neuro majority that needs to be taught about human differences and how to accept and appreciate them.

From Medical to Social Model

The transition from the medical model to the social model represents a profound shift in understanding disabilities. The medical model, dominant for much of the 20th century, views disabilities as defects or abnormalities within the individual that need to be treated or cured. In contrast, the social model advocates for the recognition of societal and environmental factors that contribute to the disabling experience. It emphasises the importance of societal change, accommodation, and acceptance of diversity.

Conclusion

The evolving language around neurodiversity reflects a broader, more inclusive understanding of human differences. Moving from pathology labels to recognising neurodiversity and advocating for the rights of neuro minorities signifies a shift towards a more humane and equitable approach. This transformation underscores the importance of societal adaptation and the value of embracing diverse neurotypes, ultimately fostering a more inclusive world for all.

References:

1. American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders (5th ed.).

2. Lord, C., & Bishop, S. L. (2015). “Autism spectrum disorders: Diagnosis, prevalence, and services for children and families.” Social Policy Report.

3. Wing, L. (1981). “Asperger’s syndrome: A clinical account.” Psychological Medicine.

4. Volkmar, F. R., & Klin, A. (2000). “Diagnostic issues in Asperger syndrome.” In A. Klin, F. R. Volkmar, & S. S. Sparrow (Eds.), Asperger Syndrome.

5. Hyman, S. L., et al. (2020). “Identification, evaluation, and management of children with autism spectrum disorder.” Pediatrics.

6. Feinstein, A. (2010). A History of Autism: Conversations with the Pioneers.

7. Huerta, M., et al. (2012). “Application of DSM-5 criteria for autism spectrum disorder to three samples of children with DSM-IV diagnoses of pervasive developmental disorders.” American Journal of Psychiatry.

8. World Health Organization. (2018). International Classification of Diseases (11th ed.).

9. Silberman, S. (2015). NeuroTribes: The Legacy of Autism and the Future of Neurodiversity.