Tag Archives: Autism Community

Autism Community Divided

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.

Autism Speaks & Autism Moms

Challenging Misrepresentation: The Need for Authentic Autism Advocacy and Representation

Autistic individuals often face misrepresentation and stereotyping by organizations, media, and even well-meaning individuals, which can profoundly impact their self-perception and societal acceptance. These detrimental effects of such portrayals emphasise the need for a shift toward more inclusive and accurate representations of the autistic community.

Negative Portrayals and Their Impacts

  1. Infantilization in Media and Advocacy:
    • Research has shown that portraying autism primarily through child-centric narratives can lead to the “eternal child” stereotype, where autistic adults are not provided the same respect and autonomy as their non-autistic peers (Davidson & Orsini, 2013).
    • Such representations can make autistic adults feel neglected in discourse about autism, impacting their self-esteem and visibility in society.
  2. The Tragedy Narrative:
    • The focus on autism as a tragedy or a condition needing a cure can be traced back to early misunderstandings of autism as merely a disorder of childhood. Studies indicate that this narrative can lead to decreased societal acceptance and increased stigma against autistic individuals (Gray, 2002).
    • Emphasizing autism as a tragic life condition can lead to feelings of worthlessness among autistic individuals, undermining their identity and mental health.
  3. Misrepresentation of Autistic Experiences:
    • The singular narrative of autism as a debilitating condition ignores the spectrum of abilities and challenges faced by autistic individuals. This narrative excludes those whose experiences do not align with this limited portrayal (Kapp et al., 2019).
    • Exclusion can alienate autistic individuals from the community and support systems that are supposed to represent them, contributing to isolation and mental health issues.
  4. Exploitation and Privacy Violations in Social Media:
    • The trend of sharing personal moments online, especially without consent, can be harmful. Research highlights concerns about the ethical implications of sharing children’s challenging moments online, which can lead to bullying and stigmatization (Mazurek et al., 2020).
    • For autistic individuals, seeing their peers portrayed in vulnerable states can reinforce feelings of vulnerability and exploitation, reducing their sense of dignity and safety.
  5. Parent-Centric Narratives Overlooking Autistic Voices:
    • The dominance of parent narratives in autism discourse often overshadows the voices of autistic individuals themselves. Studies show that prioritizing parent experiences can skew public understanding of autism and reinforce stereotypes about dependence and incapacity (Ne’eman, 2010).
    • This shift in focus can invalidate the lived experiences of autistic individuals, making it challenging for them to assert their needs and perspectives.

The Need for Change

  • It is crucial to involve autistic individuals in leadership roles and decision-making processes within organizations that advocate for autism. Representation in media and public discourse should be diverse and inclusive of all spectrums of autism.
  • Ethical considerations must guide the portrayal of autistic individuals in the media and online. Consent and dignity should be paramount when sharing personal stories or images.
  • There is a need for educational programs that accurately portray the diversity within the autistic community, aimed at dismantling stereotypes and promoting understanding.

Conclusion

The misrepresentation of autism has far-reaching consequences, from perpetuating stereotypes to affecting the mental health of autistic individuals. By advocating for more accurate, respectful, and inclusive portrayals, society can foster a better understanding of autism and support the well-being and integration of autistic individuals in all aspects of life. Moving forward, autistic voices must lead the narrative, ensuring that their experiences and insights shape the future of autism advocacy and representation.