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Winter Blog Series #1

Winter Blog Series!

Week One

By Kimberley Hackman and Kiersten Hackman 


Neurodiversity is a vast and diverse subject with a wide variety to explore. In the next few weeks, this blog will explore Autism (1) Language and Symbols – proposed solutions for providing improved resources and support for autistic and neurodivergent individuals in schools; (2) the scientific realm of diagnoses and research—examining under/misdiagnoses, the issues with the current DSM-5 system, and the changing conceptualization of autism and neurodiversity; (3) Autism and Gender – an overview of manifestation and the role masking plays in the spectrum of autism;



Topic: Language and Symbols are often misunderstood or overlooked in the mainstream media and conversation about autism.  Here are some basics about how autistic people talk about and represent themselves—and how you can be more inclusive with your language and symbols by listening to autistic voices.


To Ponder: 

"The notion that [various functionings of the brain] should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions.” - Steve Silberman, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity


Language


Person-first and Identity-First Language

Recently there seems to have been somewhat of a push towards person-first language (ie. “a person with autism”) often led by allistics (non-autistics). 


However, research shows that the majority of the autistic community actually still prefers identity-first language (ie. “an autistic person”). Identity-first language advocates prefer these terms to highlight how autism is a fundamental part of their identity—not an “add-on” or “baggage”—that influences every part of themselves and yet also isn’t the only thing about them. This is the same as someone saying “a Hispanic person.” 

This blog series will use identity-first language when referring to generalized autistic individuals/communities. Nevertheless, some people with autism prefer person-first language to emphasize themselves as a person first, as autistic people are often dehumanized and reduced to their diagnosis. 


If you are autistic, feel free to share your individual preferences with others (without speaking for the full community) and if you are allistic, ask for and listen to the preferences of individual autistic people, understanding that everyone has a different story and the decisions of each person with autism should always be respected!



Autism diagnoses should be treated as they are—unique for every person on the spectrum.


Use High/Low Masking or High/Low Support Needs instead of Functioning Labels

Another important set of terms is high/low masking and high/low support needs instead of high/low functioning.


“Functioning labels only go so far and don’t actually describe what autistic people can do— for example, whether they can speak and hold a job or not. Hari Srinivasan, one of the first non-speaking autistic people admitted to the University of California Berkeley said that functioning labels are stigmatizing.”  - Eric Garcia, We’re Not Broken


To understand these terms, first, we must clear away a common misconception.


What the autism spectrum looks like

As shown in the picture to the left, autism is not a spectrum in the way that it ranges from “less” autistic to “more” autistic

Ideas like “touch of the tism” or “everyone’s a little autistic” are extremely harmful (they may make it difficult for actual autistic people to receive accommodations and support) and they are just plain incorrect, as autistic brains are fundamentally different from neurotypical brains.


Rather, autistic people describe autism as a spectrum based on the expression of various traits and the amount of support autistic people may need in those different areas.


This can shift over an autistic person’s life, as well as from person to person—every autistic person’s experience is different, just like every woman’s experience is different, or every black person’s experience is different. Even though there are, of course, overarching similarities, it is important to keep the diversity of the autism spectrum in mind so that you can be accommodating to individual autistic people’s specific needs!


Now, how are these two mindsets reflected in the language (rejected and accepted by the community) used to describe autistic people?




“Functioning labels only go so far and don’t actually describe what autistic people can do— for example, whether they can speak and hold a job or not. Hari Srinivasan, one of the first non-speaking autistic people admitted to the University of California Berkeley said that functioning labels are stigmatizing.”  ~Eric Garcia, “We’re Not Broken,” Chapter 1


  • High/Low Functioning

  • This terminology, created by allistics, has long been used to refer to autistic people without their consent or input

  • Many advocates have spoken out about its harmful connotations around the idea of the “functionality” (and worth) of an autistic/neurodivergent person being based on their “success” living life like a neurotypical

  • Essentially, these terms:

  • portray neurotypical as the ideal

  • frame neurodivergence like autism as marked by deficits

  • designate whether or not the way people display autism is “acceptable” to the neurotypical way of lie (ie. “high functioning” from a neurotypical pov)

  • High/Low Masking + Support Needs

  • Instead, much of the autistic community leans towards describing people across the spectrum and their various support needs and manifestations of autism through language referring to their…

  • “masking” – essentially when an autistic person simulates neurotypical behavior to “hide” their autism and assimilate into neurotypical society or situations

  • “support needs” – refers to the pattern and intensity of support systems, resources, and accommodations needed for someone to participate in an environment designed for neurotypical people, like a school.

  • For example, an autistic person with high masking and low support needs may be able to “pass” as neurotypical in daily life situations like school and thus may be perceived from a neurotypical-centered and ableist perspective as “high-functioning,” despite being neurodivergent and thus neurotypical environments being overwhelming, challenging, and not accommodating for their brain and its specific needs

  • High masking, as well as support needs not being met, often lead to severe mental health impacts for autistic people, especially because diagnoses and the resources and empowering self-knowledge they provide may not come until much later in life, if at all 

  • Support can take many forms—Eric Garcia lists a few basic ones in his book, We’re Not Broken: Changing the Autism Conversation: help in finding jobs, lifting out of poverty if they can’t get a job, avoiding discrimination, living in the community they choose, having access to adequate education and health care, and being free to pursue fulfilling personal lives


“… someone who on the surface might appear high functioning can have difficulties that are different from those who require more support. It is because we as autistic people realize that we have much in common with those who cannot speak or who need more services that we want to make the world more adaptable for them too.” –  Eric Garcia, “We’re Not Broken,” Chapter 2


The best policy is always to listen to autistic individuals. People will inevitably have a spectrum of opinions, so make sure to directly ask about a person’s preferred language instead of making assumptions and generalizations.1


Symbols


If a person grows up overhearing these things about autism, not really ever having disabled people to interact with in their classes or at their job, every day walking by solemn black and white pictures of kids looking away from cameras with blue puzzle pieces in the corner, and then years later their child is diagnosed as being autistic…well, we’ve made that parent afraid of their child’s disability before they are even born.”

 - Julia Bascom at at the DC DDOM Vigil in 2018



The most commonly accepted symbol for neurodiversity is the rainbow infinity symbol, created by neurodiversity advocates to represent the infinite variations and possibilities within the community. It is often used for the autism community as well, along with the gold infinity symbol since the elemental symbol for gold is Au (for AUtism!).


Unfortunately, there are many popular symbols that are associated with autism that a large part of the community itself has long spoken up against as harmful.


Symbols not to use:



The puzzle piece is probably the most commonly used and recognized symbol for autism. It has an ableist history of stigmatizing and dehumanizing autistic people (even once depicting a crying boy within the puzzle piece), and its implications perpetuate the narrative that autistic people are incomplete (with a “piece missing) or have a “puzzling disorder.”

Similarly, the color blue has been used without autistic input or permission to represent autism, maintaining a problematic history of representing harmful and scientifically inaccurate ideas about autism being a “boy’s” disorder.  In a future post, this blog series will discuss the gender inequality in autism diagnoses that manifest due to the different presentations of autism in girls and a history of biased autism research.  In short, ASD is not a “boy’s” disorder, and thus representing autism with the color blue is not inclusive to all people.


Organizations

Unfortunately, there is a lot of rampant misinformation about autism, much of which comes from seemingly trustworthy organizations that are unfortunately harmful to the community and which autistic advocates have consistently spoken out against.


If you would like to learn more about autism or how to support the autistic community, here are some basics about organizations and resources to get you started. And remember—when in doubt, try to always listen to what autistic people are actually saying about their rights and needs.


TO SUPPORT:

True autistic advocacy organizations are created by or with autistic people and involve active and extensive inclusion of autistic voices.


Characteristics

  • Do not present autism as something wrong or undesirable or in need of fixing, but rather advocate for inclusion and social acceptance of autistic individuals

  • Centered on the social model of disability

  • Will usually implement the preferred symbols and language of the autistic community

  • Help fund services (communication, education, housing, healthcare, advocacy) that directly benefit autistic individuals.

  • Founded by or heavily include autistic people, research is done by autistic people with a goal to educate and empower autistic individuals


Examples


TO AVOID:

Unfortunately, negative autistic organizations outnumber beneficial ones, and due to rampant misinformation and ignorance, many people are not aware of the harmfulness of many “autistic advocacy” organizations.


Characteristics

  • Negative portrayals of autism

  • Present it as a “puzzle” to be solved

  • Portrayed as something to be cured/treated/prevented/combated

  • Compare it to diseases and disorders (pathologize)

  • Negative words/images

  • Language – dehumanizing and harmful (ie. “people touched/affected/impacted by autism”)

  • Symbols – depict autistic people as broken/incomplete/infantilized

  • Focused on

  • Families of autistic people, who are portrayed as victims of the “tragedy” of autism

  • Cure and treatment research (where most of their funding goes)

  • Pathologizing and fear-mongering autism “awareness” ads (ie. Autism Speaks’ “I am Autism” ad)

  • The medical model of disability –> supports conferences/research that use this model

  • Exclusive

  • Do not involve autistic voices (ie. 1 autistic member of the 28 individuals on Autism Speaks’ Board of Directors)

  • Unscientific

  • May use outdated or falsified research to support their statements (ie. perpetuating false and harmful information about autism being caused by vaccines)


Examples

  • Autism Speaks

  • TACA

  • Autism One

  • the Autism Society

  • the National Autistic Society

  • Generation Rescue

  • and more (unfortunately, negative autistic organizations outnumber beneficial ones)


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As a person who has Autistic students, friends, and family members, this blog is well spoken. It does a solid job of explaining different perspectives in an accessible way. I appreciate the clarifications regarding the puzzle pieces and color blue.

For a humorous perspective from the Spectrum community, check out the Allistic Pathology parody.

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