Why How We See Autism Matters

Autism Reframed: From Disorder to Diversity

How Our View of Autism Is Transitioning

Despite headlines framing autism as a mystery to be solved or a problem to fix, those who know autistic people up close see it as a diverse way of experiencing the world, full of strengths, challenges, and individuality. This disconnect is both personal and deeply troubling. Living with my stepdaughter, I see her intelligence, curiosity, and unique ways of perceiving the world. Yes, navigating a neurotypical world can be difficult, but these challenges reflect gaps in our ability to communicate and support her, not deficits in her. As part of my research, I also study neurodivergence more broadly, which only deepens my concern with how autism is misunderstood and misrepresented.

This perspective makes it clear why misunderstanding and fear of autism remain so urgent to address: stigma misrepresents autistic people and makes daily life unnecessarily harder for them and the families who love them.

In this post, I will explore how our understanding of autism has changed (or is changing) and why some older models may no longer serve us as awareness and inclusion grow.

Models of Autism: Understanding the Shifts

Autism has been understood through a variety of lenses over the past century, each shaping how society perceives autistic people and informs research, policy, and support. Understanding these models helps contextualize why perceptions have changed, and especially why they continue to evolve.

1. Medical / Pathological Model (1940s–1970s)

The medical model has deep roots in early 20th-century psychiatry and pediatrics. Leo Kanner’s 1943 description of “early infantile autism” and Hans Asperger’s parallel work in the 1940s framed autistic behaviors as deviations from typical development. This model emphasizes deficits, diagnosis, and treatment, aiming to categorize observable symptoms for clinical and research purposes (Ritvo and Freeman, 1984).

While the medical model has been essential for providing access to diagnostic services and structured research, it also pathologizes autistic traits, framing differences as problems to fix rather than natural variation. This lens continues to influence public perception, policy, and medical practice today.

2. Social Model of Disability (1980s–1990s)

Emerging from broader disability rights movements, the social model shifted focus from the individual to society. It argues that many challenges autistic people face stem from environmental, social, and institutional barriers rather than the neurological differences themselves (Oliver, 2013; Milton et al, 2017).

Strengths of this model include its emphasis on accessibility, accommodations, and inclusion. However, it can underplay individual variation and still relies on the medical model for diagnosis and service eligibility in many contexts.

3. Neurodiversity Paradigm (2000s–Present)

The neurodiversity paradigm reframes autism as a natural variation in human neurology, emphasizing strengths alongside challenges. It centers the voices of autistic people themselves, advocating for acceptance, inclusion, and systemic change rather than “fixing” autism (Chawner and Owen, 2022; Pellicano and den Houting, 2022).

This approach challenges longstanding deficit-based assumptions, influences advocacy, research priorities, and policy, and has shaped shifts in language, symbolism, and public understanding. While the paradigm is gaining traction, integration into clinical practice, policy, and mainstream awareness remains a work in progress.

Visualizing the Transition

To see this evolution at a glance, the table below summarizes the key features of each model:

Time	Model	Key Focus	Strengths	Limitations
1940s–1970s	Medical / Pathological	Diagnosis, deficits, treatment	Access to services, structured research	Pathologizes difference, ignores lived experience
1980s–1990s	Social Model of Disability	Societal barriers, environment	Highlights role of context and accessibility	Less attention to individual variation
2000s–Present	Neurodiversity Paradigm	Neurological diversity, strengths + challenges	Centers autistic voices, promotes inclusion	Implementation in policy/practice still uneven

Note: These models are not mutually exclusive. Even today, medical perspectives remain essential for clinical care and service access, while social and neurodiversity frameworks increasingly guide advocacy, education, and research.

Language Matters: Identity, Respect, and History

The language we use to describe autism profoundly influences public perception, policy, and the lived experiences of autistic individuals. Two primary approaches are commonly discussed: person-first language (PFL) and identity-first language (IFL) (Best et al, 2022; Grech et al., 2024).

Person-First Language (PFL): Origins and Rationale

• Historical Context: Person-first language emerged from the broader mental health and disability movements in the 1970s and 1980s. Advocates aimed to emphasize the individual rather than the diagnosis, to reduce stigma, and to counteract dehumanizing labels that defined people solely by their condition (Crocker and Smith, 2019).

• Example: “Person with autism” instead of “autistic person.”

• Why It Matters: PFL helped shift focus from deficits to the individual as a whole, a perspective particularly important in healthcare, education, and policy contexts. It remains widely used in clinical and institutional settings to promote respect and avoid labeling someone by their condition.

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Identity-First Language (IFL): Emergence and Significance

• Autism Advocacy Shift: In contrast, many autistic self-advocates prefer identity-first language (“autistic person”) because autism is inseparable from their identity, not merely a medical condition. IFL acknowledges that autistic traits influence how a person experiences the world, interacts socially, and perceives themselves.

• Community Preferences: Recent studies indicate strong preference for IFL among autistic adults. For example, a 2023 study found that 87% of autistic adults preferred identity-first language terms to refer to themselves or others with autism (Taboas et al., 2023). Another study in Australia found that people with stronger autistic identity endorsed IFL more, whereas those who had internalized stigma found IFL more challenging (Bury et al., 2023). There is not universal agreement, but the trend is clear: many autistic people see their autism as inseparable from their identity.

Why the Shift Matters: Moving from default PFL to accepting IFL reflects respect for self-identification, centers the voices of autistic individuals in conversations about autism, and challenges assumptions embedded in the medical model.

What “Spectrum” Really Means (and What It Doesn’t)

A common misunderstanding is that “on the autism spectrum” means “a little autistic” vs “very autistic” (see Figure 1), that there is a hierarchy, or that some people are only “mildly” autistic, others “severely.”

A little autistic                                           vs                                                       Very autistic

Figure 1. The incorrect/ inaccurate representation of the autism spectrum

That framing is misleading in several ways:

• The spectrum refers to multiple domains (communication, social interaction, sensory processing, executive function, motor skills, etc.), each of which can vary independently. Someone may be non-speaking but extremely fluent in other domains; someone else may speak well but struggle with sensory overload or social nuance.

• It’s not linear (“more” or “less” autism), but multidimensional (see links below for more accurate representations). Two autistic people may seem very different from each other, yet both are autistic.

• Labels like “low functioning,” “high functioning,” “mild,” or “severe” tend to treat autism as a fixed hierarchy that oversimplifies people’s experiences. Increasingly, researchers and self-advocates prefer talking about support needs (what supports are needed in what areas and at what time) rather than ranking people.

A great infographic for the true depiction of a “spectrum” in the case of autism can be found here: https://camhsprofessionals.co.uk/2021/03/31/the-autism-spectrum%F0%9F%8C%8D/

The Autism Wheel is also another more accurate depiction of the autism spectrum. https://ablelight.org/blog/why-the-autism-wheel-is-replacing-the-spectrum/

Transition Over Time in the Experience of Autism

Another transition worth exploring is how an autistic person’s visible difference from peers may appear to grow over time, not necessarily because the person has changed fundamentally, but because the world around them changes, expectations change, and peer norms change. It is important to note that this is not the same as variability in symptom severity within a given person’s trajectory (Waizbard-Bartov and Miller, 2024)

• Early childhood: When children are young, many differences are less obvious, or expectations are lower (e.g., in play, verbal vs non-verbal communication).

• School years: As children grow, social, academic, and executive functioning expectations increase. Peer comparison intensifies. What was manageable (or not noticed) becomes more visible.

• Adolescence and adulthood: Social nuance, communication demands, independence, interpersonal relationships, employment, all bring new challenges. Sensory overload, mental health impacts, and masking (trying to hide autistic traits) may also increase.

  
  

Importantly, even though capacities may grow (some skills improve with age, support, or environment), especially for individuals considered high functioning (McGovern and Sigman, 2005), the relative distance (how much someone’s ability matches social expectation) may appear to widen if supports aren’t adequate, or if society doesn’t adapt.

Umbrella Term or Many Different Disorders?

• In past diagnostic systems (e.g. DSM-IV; APA, 1994), there were multiple Pervasive Developmental Disorders (PDDs): Autistic Disorder, Asperger’s Syndrome, PDD-NOS, etc. These were seen as related but distinct.

  
  

• In DSM-5 (APA, 2013) and more recent ICD versions, these categories were merged into a single diagnosis: Autism Spectrum Disorder (ASD). The idea was that there was more overlap than clean separation, and a spectrum model better captured variation in traits, support needs, and outcomes.

  
  

• Some still identify with older labels (e.g. those diagnosed under Asperger’s) because they feel it is part of their identity (Autism Speaks, 2025). Others welcome the unification, because it reduces confusion and hierarchy.

  
  

• While autism is one diagnostic category now, it's recognized as extremely heterogeneous; even within ASD, experiences vary widely (Masi et al., 2017). Some researchers refer to “the autisms” to emphasize this.

  
  

** To understand how definitions of autism have evolved, it helps to know a bit about the tools clinicians use to classify it. Two of the most important are the DSM (Diagnostic and Statistical Manual of Mental Disorders), published by the American Psychiatric Association, and the ICD (International Classification of Diseases), published by the World Health Organization. Autism first appeared in the DSM-III in 1980 (APA, 1980) as “Infantile Autism” and in the ICD-9 in 1978 (WHO, 1977), both reflecting early clinical observations of social and communication differences in children. Over the decades, successive revisions, culminating in DSM-5-TR (APA, 2022) and ICD-11 (WHO, 2019/2022), have expanded and refined the criteria, moving from narrowly defined disorders to the modern concept of Autism Spectrum Disorder. These evolving classification systems help explain why public, clinical, and research understanding of autism has shifted over time.

Why Has Our Understanding Shifted?

• Advocacy, especially self-advocacy: Autistic people increasingly speaking about their own lives, pushing back against narratives of deficit.

  
  

• Research changes: More focus on real lived experience, quality of life, sensory processing, mental health. Also work done to dispel harmful myths (e.g. old discredited ideas about vaccines, medications during pregnancy, “cold mothers,” etc.).

  
  

• Cultural change and social justice: Disability rights, civil rights, neurodiversity movements have pushed for recognizing diversity, dignity, inclusion.

  
  

• Shifting diagnostic practices and guidelines: DSM-5, ICD-11, WHO etc., encourage broader thinking on what it means to meet criteria, and often more sensitivity to how symptoms present across ages, genders, cultures.

  
  

• Language and symbolism: Moves away from puzzle pieces and predominantly blue colour schemes (which many criticize) toward symbols like the coloured/gold infinity symbol, more pluralistic representations of neurodiversity. Language shifts (acceptance instead of awareness, autistic person instead of person with autism) reflect deeper value changes.

Misinformation and Stigma: Why Fear Persists

• Myths abound. For example, many believe autistic people “don’t want friends,” or “are dangerous,” or that all are savants (gifted in a special way). A study of focus groups among students, adults with and without experience of autism found several widely held false beliefs, including that all with autism have special talents, that they are dangerous, etc (John et al., 2018)

  
  

• Recent news stories that suggest simplistic causal links (e.g. medication, environment, toxins) often get sensationalized (The White House, 2025). Experts warn that such claims can fuel fear and stigma. (See recent critiques of proposals to find “the cause” of autism without sufficient evidence in environmental or genetic data.) (Marcos, 2025)

  
  

• Lack of public awareness about autism’s diversity. Visibility tends to be skewed toward those who are more easily seen (verbal, with noticeable repetitive behaviours), which skews stereotypes.

  
  

• Fear often arises from uncertainty, from not knowing how to relate, from lack of representation. If people believe autism is entirely a deficit, or that autistic people are “other,” fear persists.

  
  

(Turnock et al., 2022)

The Real-World Impact of Transitioning Perspectives

• For autistic people themselves: dignity, identity, mental health. When society treats autism as a deficit and excludes or stigmatizes, that takes a psychological toll (Han et al., 2022; Turnock et al., 2022).

  
  

• For families, educators, clinicians: better alignment with what matters in practice. Less about “normalizing,” more about supporting communication, reducing sensory stress, ensuring inclusion, considering quality of life, that is, neuro affirmative support (Zaks, 2025).

  
  

• For society: more inclusive environments, better policy, a richer understanding of human diversity. This concept draws on the pioneering ethnographic work of Ruth Benedict and Margaret Mead; while their research focused on cultural differences across societies, the same principle applies here in helping us better understand and value diversity.

What Can We Do

• Listen to autistic voices. Include autistic self-advocates in research, policy, support design.

• Be careful and intentional with language. If possible, ask people how they want to be identified; respect that different people prefer different terms.

• Educate: help reduce myths and misinformation. Schools, media, workplaces can do better in how they portray autism.

• Shift from “fixing” autism to supporting autistic people: think about environment, accommodations, sensory spaces, flexibility.

• Promote research that is guided by priorities of autistic communities, e.g. mental health supports, communication tools, self-advocacy, intersectional experience (gender, race, culture).

Conclusion

We are in a transition, a transition in how we see autism, away from fear and deficit, toward understanding, dignity, and inclusion. Autism is not something to be “cured” but something to be understood, accommodated, and embraced. The spectrum isn’t a measure of value; it’s a recognition of diversity. As language shifts, models change, symbols evolve, these are signs that society is learning, but that work is far from done.

It matters how we talk about autism, what stories we tell, and whose voices we center. Because through those choices, we can reduce stigma, combat fear, and build a world where autistic people aren’t just tolerated but truly valued.

-- Anne TM Konkle, PhD

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