Why everything you know about autism is wrong | Jac den Houting | TEDxMacquarieUniversity

TEDx Talks
1 Nov 201913:20
EducationalLearning
32 Likes 10 Comments

TLDRThe speaker shares a personal journey of being diagnosed with autism at 25, which brought relief and a new understanding of their identity. They challenge the medical paradigm that views autism as a disorder, introducing the neurodiversity paradigm instead, which sees autism as a natural variation in human neurological development. The speaker advocates for a paradigm shift in autism research and support, emphasizing the need for autistic-led research and services that respect autistic individuals' rights to live authentically, debunking the myth that they are tragedies and promoting a more inclusive society.

Takeaways
  • 🌐 The Earth's shape was once believed to be flat, illustrating how fundamental assumptions can change through evidence, a concept related to the evolving understanding of autism.
  • 🧠 Autism is traditionally viewed through a medical lens as a disorder, but this perspective is being challenged by the neurodiversity paradigm.
  • 🌟 The speaker's personal diagnosis with autism at 25 was life-affirming and led to a paradigm shift in their self-perception, from a failure to a perfectly good autistic person.
  • 🔬 The speaker pursued a Ph.D. in autism, becoming part of a growing number of openly autistic researchers, highlighting a shift in who leads autism research.
  • 🤖 Initially, the speaker found information about autism focused on deficits, which contrasted with their positive personal experience, leading them to explore further.
  • 🌈 The neurodiversity paradigm frames autism as a natural variation in human neurological development, emphasizing the value of different ways of thinking.
  • 💡 The social model of disability posits that disability arises from an environment not accommodating individual needs, not from the individual themselves.
  • 🛍️ The speaker uses the example of shopping malls to illustrate how environmental design contributes to their feeling of being disabled.
  • 💰 The majority of autism research funding is allocated to genetic and biological research and treatments, with minimal focus on services to support autistic individuals.
  • 👥 Dr. Damian Milton's 'double empathy problem' theory suggests that social difficulties between autistic and non-autistic people may stem from a mismatch in communication styles rather than inherent deficits.
  • 🔄 A study by Dr. Catherine Crompton supports the double empathy problem, showing that communication accuracy is not inherently worse in autistic individuals but is affected by interaction with non-autistic people.
  • 🌱 The speaker calls for a paradigm shift in autism research and support, advocating for authentically autistic lives and research led by autistic individuals.
Q & A

  • What is a paradigm shift and how does it relate to the Earth's shape?

    -A paradigm shift refers to a fundamental change in the basic assumptions or paradigms that govern the way of thinking about a particular subject. In relation to the Earth's shape, it signifies the historical change from the belief that the Earth was flat to the understanding that it is round, based on evidence that contradicted previous beliefs.

  • How does the medical paradigm view autism?

    -The medical paradigm views autism as a medical condition or disorder. It suggests that there is a 'normal' way for brains to develop and function, and any deviation from this norm is considered wrong and in need of treatment or correction.

  • What was the speaker's personal experience after being diagnosed with autism?

    -The speaker experienced an overwhelming sense of relief upon being diagnosed with autism at the age of 25. The diagnosis helped make sense of their life up to that point, shifting their self-perception from being a failed neurotypical person to embracing their identity as an autistic person.

  • What is the 'neurodiversity paradigm' and how does it differ from the medical paradigm?

    -The neurodiversity paradigm is an alternative way of thinking about autism. It views autism as a part of the natural variation in human neurological development, suggesting that there are no right or wrong brains and that all forms of neurological development are equally valid and valuable. This contrasts with the medical paradigm, which pathologizes autism.

  • According to the speaker, what is the difference between the medical model and the social model of disability?

    -The medical model of disability assumes that disability is an individual problem located within the person, such as the way their brain processes input. In contrast, the social model of disability posits that disability occurs when a person's environment does not accommodate their individual characteristics, viewing disability as something imposed by societal structures rather than an inherent personal trait.

  • What does the speaker suggest about the current state of autism research funding?

    -The speaker suggests that a significant portion of autism research funding is allocated to genetic and biological research aimed at understanding and potentially preventing autism. Additionally, a considerable amount is spent on treatments designed to make autistic individuals 'act less weird,' with only a small percentage dedicated to services that support autistic people.

  • What is the 'double empathy problem' proposed by Dr. Damian Milton?

    -The 'double empathy problem' is a theory proposed by Dr. Damian Milton, which suggests that the social difficulties observed between autistic and non-autistic individuals may not be due to social deficits in autistic people, but rather because both groups are poor at communicating in ways that the other can understand.

  • What was the outcome of Dr. Catherine Crompton's study on communication between autistic and non-autistic individuals?

    -Dr. Catherine Crompton's study, which used a 'diffusion chain' task, found that both all-autistic and all-neurotypical groups were equally accurate in their information sharing. However, the group consisting of both autistic and non-autistic individuals was significantly less accurate and clear, supporting the double empathy problem theory.

  • What changes does the speaker advocate for in the approach to autism?

    -The speaker advocates for a paradigm shift in the understanding of autism, emphasizing the need to recognize that the goal should not be to make autistic individuals 'act less weird.' Instead, they call for services and supports that respect autistic individuals' authenticity and help them live long, happy, and fulfilling lives.

  • Why is it important to have research led by autistic individuals, according to the speaker?

    -The speaker believes that research led by autistic individuals is crucial because it is more likely to address the questions and concerns that are most relevant to the autistic community, leading to more meaningful and effective outcomes.

Outlines
00:00
🌐 Paradigm Shift in Understanding Autism

The speaker begins by drawing a parallel between the historical belief that the Earth was flat and the current medical paradigm that views autism as a disorder. They recount their personal journey of being diagnosed with autism at 25, which brought them relief and a new understanding of their identity. The speaker challenges the medical model's 'normal' way of neurological development and instead introduces the concept of neurodiversity, which views autism as a natural variation in human neurological development. They advocate for recognizing and respecting the value of different neurological forms and the rights of autistic individuals.

05:01
🦽 The Social Model of Disability and Autism

In this paragraph, the speaker discusses the concept of disability, contrasting the medical model, which sees disability as an individual problem, with the social model, which attributes disability to an unaccommodating environment. They use their own experience with shopping malls as an example to illustrate how the environment, rather than the individual, can cause disability. The speaker also critiques the focus of autism research, which predominantly views autism as a problem to be solved or prevented, rather than supporting autistic individuals. They highlight the concerning statistics regarding the well-being of autistic people and call for a shift in research priorities to better support the autistic community.

10:02
🗣️ The Double Empathy Problem and Communication Mismatch

The speaker introduces Dr. Damian Milton's 'double empathy problem' theory, which suggests that the social difficulties experienced by autistic and non-autistic individuals may not stem from a deficit in the autistic person, but rather from a mismatch in communication styles. They describe a study by Dr. Catherine Crompton that tested this theory using a 'diffusion chain' task, showing that both autistic and neurotypical groups communicated effectively within themselves, but less effectively when interacting with each other. The speaker concludes by advocating for a paradigm shift in autism research and support, emphasizing the importance of autistic-led research and services that respect autistic individuals' authenticity and promote their well-being.

Mindmap
Keywords
💡Paradigm Shift
A paradigm shift refers to a fundamental change in the basic concepts and practices of a particular discipline or field. In the context of the video, it is used to illustrate the change from the belief that the Earth was flat to the understanding that it is round, and similarly, the shift in understanding autism from a medical condition to a natural variation in human neurological development.
💡Autism
Autism is a developmental disorder characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. The video discusses how society's perception of autism has traditionally been through a medical lens, viewing it as a disorder that needs fixing, but also introduces the concept of neurodiversity, which sees autism as a natural part of human diversity.
💡Neurodiversity Paradigm
The neurodiversity paradigm is an alternative perspective that views autism and other neurological differences as variations of human brain function, rather than disorders that need to be cured. The video emphasizes this paradigm as a way to understand and accept autism as a part of the natural range of human neurological development, promoting the idea that all forms of neurological development are equally valid and valuable.
💡Medical Model of Disability
The medical model of disability is a framework that views disability as a problem within the individual, often resulting from a medical condition. In the video, the speaker contrasts this model with the social model of disability, arguing that the medical model places the onus on the individual (e.g., the autistic person struggling with sensory overload in shopping malls) rather than considering environmental factors.
💡Social Model of Disability
The social model of disability posits that disability is a result of the interaction between individuals and an environment that is not accommodating to their needs. The video uses this model to argue that the speaker's struggles with shopping malls are not due to an inherent problem with their brain but because the environment is not designed to cater to their sensory needs.
💡Deficits
In the context of the video, deficits refer to the perceived shortcomings or impairments in areas such as social interaction, communication, and sensory processing that are often attributed to autism within the medical model. The speaker challenges this notion by suggesting that these are not deficits but rather different ways of experiencing and interacting with the world.
💡Authenticity
Authenticity, in the video, refers to the right of autistic individuals to be true to their own experiences and identities without feeling the need to conform to neurotypical standards. The speaker advocates for services and supports that respect and celebrate the authenticity of autistic individuals, rather than trying to make them 'act less weird'.
💡Double Empathy Problem
The double empathy problem is a theory proposed by Dr. Damian Milton, suggesting that the social difficulties experienced by autistic and non-autistic people may be due to a lack of mutual understanding and empathy, rather than inherent social deficits on the part of autistic individuals. The video discusses a study that supports this theory, indicating that communication problems arise from a mismatch in communication styles.
💡Research Led by Autistic People
This concept refers to the importance of having autistic individuals lead research on autism to ensure that the questions being asked and the perspectives considered are relevant and meaningful to the autistic community. The video speaker, who is autistic, emphasizes the value of such research in understanding and supporting the autistic community more effectively.
💡Autistic Community
The autistic community refers to the collective group of individuals who identify as autistic. The video highlights the importance of listening to and valuing the insights and experiences of this community, particularly when it comes to understanding autism and developing appropriate supports and services.
💡Cognitive Environment
Cognitive environment, as mentioned in the video, is an abstract concept that refers to the mental and intellectual surroundings that influence an individual's thinking and behavior. The speaker likens neurodiversity to biodiversity, suggesting that a variety of neurological perspectives can enrich the cognitive environment and contribute to a more sustainable and healthy society.
Highlights

The concept of a paradigm shift is introduced, comparing the historical shift in understanding the Earth's shape to current assumptions about autism.

Autism is traditionally viewed through a medical lens as a disorder, but the speaker's personal diagnosis led to a positive self-understanding.

The speaker's diagnosis with autism at 25 provided a sense of relief and a new perspective on their identity.

The 'neurodiversity paradigm' is introduced as an alternative view of autism, emphasizing natural variation in neurological development.

The neurodiversity paradigm posits that there is no 'right' or 'wrong' way to neurologically develop, and all forms are equally valuable.

The speaker discusses the social model of disability, which attributes disability not to the individual but to an unaccommodating environment.

The concept of being 'actively disabled' by society is explained, using the example of struggling in shopping malls due to environmental design.

Autism research is criticized for largely viewing autism as a problem and focusing on genetic and biological causes and treatments.

Funding分配 for autism research is detailed, with a significant portion going towards finding causes and treatments, rather than services.

The stark statistics on the challenges faced by autistic individuals, including unemployment, mental illness, and reduced life expectancy, are presented.

Dr. Damian Milton's 'double empathy problem' theory is introduced, suggesting that social difficulties between autistic and non-autistic people may stem from a communication mismatch.

A study by Dr. Catherine Crompton using a 'diffusion chain' task supports the double empathy problem theory, showing equal communication accuracy between autistic and non-autistic groups.

The need for a paradigm shift in autism research and support is emphasized, advocating for autistic-led research and authentically autistic lifestyles.

The speaker concludes by rejecting the notion that they are a tragedy and calls for recognition and respect for autistic individuals.

The importance of dignity, respect, and full human rights for all people, regardless of neurological differences, is highlighted.

Transcripts

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Autism AwarenessNeurodiversityParadigm ShiftMedical ModelSocial ModelCognitive DiversityAutistic VoicesResearch FundingDouble EmpathyAuthenticity