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Editorial

Autism Community Divided

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Unpacking How ‘Asperger’s’ Contributes to Division in the Autism Community

  • Is Asperger syndrome a severe form of autism spectrum disorder?
  • How does Asperger’s compare to autism intelligence?
  • What is life like for someone with Asperger’s?

Above are the typical questions Autistics and families of Autistics get asked often. Words matter. They can be inclusive or divisive. Because we can never know how an individual feels about a word or events surrounding a word, its always best to ask or use formal terminology. If you can’t remember either choice, silence is always an option.

The use of the term “Asperger’s” within the autistic community and broader discussions about autism spectrum disorder (ASD) has become a topic of debate and sensitivity for several reasons, leading some to avoid its use in favour of more inclusive or neutral terminology. Here are the key reasons why the term “Asperger’s” can perpetuate negative bias and why it may be viewed unfavourably by some within the autistic community:

  1. Association with Hans Asperger: The term “Asperger’s syndrome” originates from Hans Asperger, an Austrian pediatrician who, during World War II, identified a group of children with distinct psychological characteristics. Recent historical research has revealed that Asperger cooperated with the Nazi regime’s eugenics policies, including the forced sterilization and euthanasia of disabled individuals. This association with Nazi eugenics has led to a reevaluation of his legacy and a push to distance the autistic community from his name.
  2. Pathologizing Language: The term “Asperger’s syndrome” is sometimes criticized for pathologizing individuals, implying a disease or disorder that needs to be cured or fixed. Many within the autistic community prefer identity-first language (e.g., “autistic person” rather than “person with autism”) and view autism as a difference rather than a disorder. The specific label of “Asperger’s” can be seen as reinforcing a medical model of disability rather than a social model that focuses on societal barriers and acceptance.
  3. False Perception of Homogeneity: Using specific labels like “Asperger’s” can contribute to stereotypes about what autism looks like, potentially overshadowing the diversity within the autistic community. It may reinforce a narrow view of autism as being associated only with those who are verbal or have certain intellectual or academic abilities, ignoring the wide range of experiences and needs within the community.
  4. Hierarchy within the Autism Spectrum: The term “Asperger’s” has been used in the past to denote a “milder” form of autism, sometimes leading to a perceived hierarchy within the autism spectrum. This can invalidate the experiences and challenges faced by those who don’t fit this narrow definition, and it can perpetuate the idea that some autistic experiences are more “acceptable” or “normal” than others.
  5. Diagnostic Criteria Changes: The diagnostic criteria for autism spectrum disorders have evolved. The DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition), published by the American Psychiatric Association in 2013, removed Asperger’s syndrome as a separate diagnosis and merged it into the broader category of autism spectrum disorder (ASD). This change reflects a move towards understanding autism as a spectrum with varying degrees of support needs rather than as distinct subtypes. This shift in diagnostic criteria has also influenced the language professionals and advocates use.
  6. Self-Identification and Community Preferences: Some individuals diagnosed with Asperger’s syndrome before the diagnostic criteria change may still identify with the term, and it’s important to respect personal identification choices. However, the broader movement towards more inclusive and less stigmatizing language reflects a community preference towards unity and recognition of diversity within the spectrum.

In conclusion, the debate surrounding the use of the term “Asperger’s” within the autistic community and discussions about autism spectrum disorder underscores the importance of language and its impact on inclusion and perception. The term’s association with Hans Asperger, pathologizing language, false perception of homogeneity, perceived hierarchy within the autism spectrum, changes in diagnostic criteria, and community preferences all contribute to the complexity of this issue.

Moving forward, it’s crucial to prioritize respectful and inclusive language that reflects the diversity and lived experiences of individuals on the autism spectrum. This includes using identity-first language when appropriate and recognizing that autism is a spectrum with a wide range of strengths, challenges, and support needs. By fostering a sense of unity and understanding within the community, we can work towards creating a more accepting and supportive environment for all individuals on the autism spectrum.

Stereotypes and Bias

Negative Bias

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Overcoming Negative Bias: The Historical Context and Persistent Challenges of Autism

Negative biases towards autism profoundly affect autistic individuals’ lives, influencing how they are perceived by others and how they view themselves. This blog post explores the historical roots of these biases, their effects on autistic individuals in various aspects of life, and the ongoing efforts needed to combat these prejudices.

Historical Examples of Negative Bias and Its Consequences

  1. Early Misunderstandings and Treatments:
    • 19th Century Europe: Autism, not yet named, was often confused with schizophrenia or psychosis. Autistic behaviors were misunderstood as signs of madness, leading to inhumane treatments like confinement in asylums where individuals received minimal care and faced abuse.
    • Leo Kanner (1940s): Kanner first described “early infantile autism” and posited it resulted from cold and unaffectionate parenting. This “refrigerator mother” theory propagated a blame culture, stigmatizing families and isolating autistic individuals further.
  2. The Rise and Fall of the Psychoanalytic Approach:
    • Mid-20th Century: Psychoanalysis dominated autism therapy, focusing on altering the supposed “emotional disturbances.” Treatments often ignored the actual needs and potentials of autistic individuals, emphasizing conformity over understanding.
  3. Institutionalization and Its Legacies:
    • 1960s-1970s USA: Many autistic individuals were institutionalized, often living in poor conditions with inadequate care. The belief that they could not learn or live independently led to lifelong institutionalization for many, stripping them of personal agency and growth opportunities.

Impact of Negative Bias on Perception by Others

  • Misunderstanding of Behavior: For example, Henry Cavendish, an 18th-century scientist suspected to have been autistic, was often described as reclusive and antisocial. His need for solitude was misunderstood, overshadowing his contributions to science.
  • Underestimation of Abilities: Historical figures like Nikola Tesla, who exhibited behaviors now commonly associated with autism, faced ridicule and isolation due to their unconventional thinking and habits.
  • Social Exclusion and Discrimination: Throughout history, from Renaissance geniuses to modern-day innovators, many potentially autistic individuals were marginalized, their talents overshadowed by their social peculiarities.

Impact on Self-Perception

  • Internalization of Negative Views: Famous autistic individuals like Temple Grandin initially struggled with self-esteem due to the negative feedback about their behaviors, which were often deemed inappropriate or strange.
  • Mental Health Challenges: The isolation and stigma can lead to severe mental health issues, as seen in the historical accounts of autistic scholars and artists who lived solitary, troubled lives.

Effects in Various Life Aspects

  • Home: Family dynamics often suffered under the weight of misunderstanding and stigma, as seen in the strained family relationships of historical autistic figures who were often viewed as burdens.
  • School: Educational settings have historically failed many autistic individuals by not accommodating diverse learning needs or addressing bullying, leading to a lack of academic and social development.
  • Work: The labor market has often been unwelcoming to autistic individuals, misunderstanding their unique needs and capabilities, which leads to underemployment and unemployment, as evidenced by the professional struggles of many intellectually capable autistic adults throughout history.

Combating Negative Bias

  • Promotion of Autism Awareness: Educational programs from the 1980s have gradually helped shift perceptions, emphasizing the abilities and potential of autistic individuals rather than just their challenges.
  • Advocacy and Inclusion Efforts: Advocacy groups, often led by autistic individuals, have worked tirelessly to change laws and policies to support better integration and accommodation in all spheres of life.
  • Cultural Shift: The portrayal of autistic individuals in media and literature has slowly begun to reflect more diversity and depth, showcasing autistic individuals as complex and capable rather than simply as caricatures.

Conclusion

The history of autism is marked by misunderstanding and marginalization, but it is also a story of gradual progress and empowerment. By learning from the past and continuing to advocate for inclusive and supportive environments, society can ensure that autistic individuals are recognised and fully appreciated for their unique contributions to our world. Moving forward, it is crucial that we all—educators, employers, policymakers, and community members—work together to dismantle the lingering stigmas associated with autism.