Updated: 2 days ago
What do you call a person who has been diagnosed with autism?
Are they a person with autism?
An autistic person?
A person on the spectrum?
This seems like a straight forward question that should have an equally straight forward answer, but it isn't. In reality, the language used to describe autistic people is a complex and divisive issue that has real world consequences for autistic health and wellbeing.
On one side of the divide are those in favor of person first language (PFL). This group includes most doctors, researchers, therapists, and parents. They use the phrasing 'a person with autism'. On the other side, are the growing communities of autistic adults who prefer to describe themselves as 'autistic person' or 'autistic'. This is known as identity first language (IFL).
Recent studies have not only highlighted autistic preferences for IFL over PFL, but have also shown that PFL may be increasing stereotypes, stigma, and dehumanization of autistic people (Botha, 2021,2020; Bury, 2020; Cage, 2019; Cooper, 2021; Corden 2021; Gernsbacher, 2017; Nguyen, 2020 ).
We have chosen this topic as our first official blog because it is a more complex issue than most people think. In fact, many of the things that are harming autistic people today can be traced to ideologies that are related to PFL.
By exploring this topic, we will see the power that language has for shaping our concept of reality and why most adult autistic communities would like society to move away from PFL.
We will cover:
Person first language and why it has failed
Autism as a pathology and illness
Inequality and dehumanization
Social Identity Theory (SIT) and the Biopsychosocial model and why they are important to autistics
Person first language (PFL) and why it has failed
In the 1970’s, person first language became the standard way to refer to someone with a condition, disorder, illness, or disability.
You are likely familiar with PFL phrasing:
a person with depression
a person with cancer
a person with autism
The intent was to put the person before their disability so that the person’s uniqueness, experiences, and strengths weren’t overshadowed by their disability. Essentially, PFL was meant to reduce stigma and dehumanization by separating the person from their disability.
On the surface, PFL makes sense, but after fifty years of use, there is no evidence that PFL has achieved its intended goals (Collier, 2012). Even worse, it is likely triggering stigma and dehumanization towards autistic people (Gernsbacher, 2017).
There are two primary reasons why PFL has failed.
PFL indicates a pathology or illness, which increases social stigma and dehumanization (Botha, 2021).
Autistic people often accept stigma as the truth about who they are resulting in internalized stigma (Botha, 2021).
Both types of stigma and dehumanization harm autistic identity, self-esteem, mental health, and overall wellness. Let’s explore each of these in more detail.
Autism as a Pathology & Illness
PFL is based on the medical model. For example, ‘a person with cancer’ indicates a diagnosis that can be treated. In the best cases, a person with cancer is cured— the cancer is eradicated, and the person resumes their life without it.
When we hear ‘a person with autism’ the same implications exist. Either consciously or subconsciously, we think about this person in terms of having a medical condition that can and should be eliminated. In other words, this language indicates that something is innately wrong with an autistic person, and that person needs to be fixed.
The problem with this approach is that until the autistic person is separated from the ‘autism’, they will be regarded as incomplete or flawed. Since autism is not something that can, in reality, be separated from the person—autistic people will never be seen as whole as long as they are viewed through the medical lens.
Furthermore, many autistic people view their autism as something inseparable from themselves (Gomes, 2018; Bury, 2020; Botha 2020). As such, the very notion that they should be cured is akin to destroying or denying who they are as a human. Yet, this is exactly what PFL and the medical model does, it ‘creates a fiction that a person outside of autism exists and this is what is to be loved instead of loving and accepting the (actual) person.’ (Botha, 2021).
Consider statements like, ‘I loved my child very much, but I hated the autism, and wanted autism out of my life. (McGuire, 2016).’ In fact, it was a statement like this that has been used as justification for filicide, whereby a mother claimed that she didn’t kill her daughter, but rather killed autism itself (Sampier, 2008). If this parent had thought of autism as an integral part of her child, instead of it being separate, would she have been able to justify her actions? Would that child still be alive? Words shape the ideologies we live by.
Language also shapes how doctors view autistic people. For example, doctors view autism as something to be treated instead of something to be understood, accommodated, and accepted. The treatment most often recommended is ABA based therapy, which aims to extinguish the socially unacceptable parts of autistic behavior. Success is often based upon how well 'autistic' behaviors are eliminated and how much better the autistic child adheres to social norms.
Who is this a success for? Parents? Teachers? A society that marginalizes those who are different?
It is certainly not a success for the autistic child.
Perhaps it is time to reconsider what we believe to be true about how autistic people think, learn, and develop.
Laurent Mottron, a psychiatrist, researcher, professor and a specialist in cognitive neuroscience research in autism at the University of Montreal, has provided compelling commentary on this topic, namely that autistic people have their own developmental stages, ways of acquiring information and knowledge, and ways of socializing that are not inferior to neurotypicals, but are very different (2017). If you apply neurotypical developmental standards to autistic children, then you are evaluating autistic children against the wrong criteria.
At the very least, we should reconsider using social norms as the basis for intervention because social norms are subjective. What is socially acceptable today will be different in ten, fifty, one hundred years from now.
The LGBTQ community, for example, has experienced this in the recent past when homosexuality was considered to be a mental illness. In other words, it deviated from acceptable social norms and became a target for medicalization. Treatments such as gay conversion therapy (a therapy based on the same principles as ABA), have been touted as a cure. Similar to ABA, gay conversion therapy has been forced upon children as a way to cure their 'gayness'. Yet, gay conversion therapy has been debunked as a credible therapy and has even become illegal in countries like Canada.
In many ways, autism has more in common with minority communities than other medical diagnoses, such as depression. For instance, unlike depression, there is no cure for autism just as there is no cure for homosexuality. There is no person before and after a 'case' of autism just as there is no person before and after a 'case' of homosexuality. Autism and homosexuality are similar in that they are different ways of being and represent different identities.
Instead of trying to force compliance with subjective social norms, why aren't we spending more time trying to understand why autistic people behave the way they do so that we can help and support them in ways that are natural and beneficial to them - not in ways that force them to mimic social norms.
Why aren't we spending more time and effort in understanding:
Why do autistic children stim?
Why is this beneficial to them/what need is it fulfilling?
Why do autistic children have meltdowns/what are the root causes?
Why do some autistic children hurt themselves or others/what are the root causes?
There are many reasons that cause or contribute to these behaviors such as:
an inability to communicate the above to caregivers/others
being forced to be something they aren't
being forced to endure painful environments until they succeed at hiding the pain and presenting as socially acceptable
being forced to be touched even though being touched is painful
being forced to stare into other peoples eyes which can be so overwhelming that it's also painful
Consider, for a moment, what it might be like to be autistic:
Imagine that you could not communicate your feelings, pain, or frustration in a way that your parents, teachers, therapists, or loved ones could understand. Imagine that you were forced to live in an environment that caused physical and mental pain day in and day out.
Imagine that you knew of a way to help relieve the pain, but others prevented you from doing it because it was socially unacceptable (e.g. stimming, being alone in a quiet place, not being forced to make eye contact, etc.).
Now imagine that your coping strategy is denied to you, but no one tries to find and mitigate the root cause of your pain and discomfort. You get a double whammy: the root cause of the pain and discomfort remains, but your coping mechanism has been taken away, which means you continue to suffer without remedy, are forced to hide the pain, and eventually you are conditioned to live with it so that you are pleasing and acceptable according to the subjective social norms of the day.
Now multiply this by ten for everything you do, 24 hours a day, 7 days a week.
At what point, would you have a meltdown or start to harm yourself or others out of sheer torment?
How long could you continue this without breaking?
Can you now understand why many autistics, who grew up with ABA, are increasingly voicing their concerns about its use? Autistic adults are increasingly sharing their experiences with this therapy and how it contributed to their depression, anxiety, trauma, and PTSD.
Your autistic child, student, patient, or loved one is likely more adept at hiding pain and denying themselves relief than you are—a practice that will continue for the rest of their lives unless the stigma attached to being autistic is corrected and we allow and support autistic children to develop in their own unique ways and to exist without being persecuted for being different.
Language is powerful. If we continue to speak of autism as if it were a disease that needs to be eradicated, then it will continue to shape society's view that we are mistakes, riddled with deficits, and not entitled to dignity and respect - unless we put on a mask and pretend to be something we are not.
Autism as a pathology or illness is reinforced by the use of PFL and its associated medical mindset, which increases stigma, allows society to ignore the root cause of why our behavior is different, denies us the behaviors that would relieve our pain, and thus denies us the support, accommodations, and acceptance that is our human right.
Stigma not only affects how autistic people are treated, but also how they feel about themselves. Internalized stigma occurs when a person is exposed to negative messages and stereotypes and comes to believe that these negative and erroneous characteristics apply to themselves.
Common (but inaccurate) autistic stereotypes found in the media (Botha, 2021) include characteristics like:
withdrawn and awkward
having difficult personalities and behavior
Even more disturbing are the horrific autistic stereotypes found in past research, which have described autistics as:
undomesticated humans (Benítez-Burraco et al., 2016)
economic burdens (Ganz, 2006; Lavelle et al., 2014)
incapable of having morals, personhood, or community (Barnbaum, 2008),
inherently selfish and egocentric (Frith, 2004)
integrity equivalent to non-human animals (Russell, 2012),
lack of ability to infer the minds of others (Baron-Cohen et al., 1985),
sub-human in need of rebuilding as proper humans (Lovaas et al., 1965).
brain-damaged monkeys (Bainbridge, 2008)
With stereotypes like these, it is not surprising that autistics are stigmatized. The stigma negatively affects the autistic’s sense of identity, self-esteem, and wellbeing.
Researchers like Corden (2021) have found that the more dissatisfaction an autistic person has towards their own autism, the lower their self-esteem and wellbeing. Corden (2021) also found that higher feelings of pride about being autistic led to higher levels of self-esteem, which makes sense because feelings of pride involve self-acceptance and self-compassion.
Autistics are, rightly so, voicing their concerns about the widespread use of PFL, the medical model of autism, and therapies like ABA because each of these contribute to internal and external stigma and paves the way to inequality and dehumanization.
Inequality & Dehumanization
Dehumanization occurs when society treats stigmatized people as though they are unequal and unworthy of human treatment (Haslam, 2006). It also erases their voices from being heard, making it difficult for stigmatized people to have a say in their own narrative.
Our voices have already been systematically excluded by the medical community and researchers and this has been justified by non-autistic researchers and doctors being accepted as the only epistemic authorities on autism.
Simply put, this means that because autistic people are autistic, they are believed to lack the ability to contribute reliable knowledge about autism (Frith & Happe, 1999; Hens et al., 2019).
As such, autistic people are researched, but any explanations or interpretations about our behaviors and experiences are typically discarded or ignored. Apparently, we are unable to know ourselves.
Of course, these are ridiculous notions but they are pervasive because autistic people are dehumanized despite evidence that ‘autistic individuals tend to have a reliable and scientific understanding of autism, which is also less stigmatizing' than the general population (Gillespie-Lynch et al., 2017; Botha, 2020).
In the worst circumstances, being dehumanized means that it is extremely difficult for stigmatized people to get justice for the abuse, discrimination, and violence they suffer. Those at the highest risk are autistic people who do not speak verbally. Without being provided other means of communication, these individuals and their needs are especially at a high risk for being ignored and dismissed. This type of environment makes abuse, violence, and neglect difficult to identify, detect, and address.
PFL aims to reduce stigma and dehumanization by reinforcing the notion that people should not be overshadowed by their disabilities, that they are human first. This is ultimately the problem with PFL—society shouldn’t need to be reminded that people who are different are human.
How do we improve autistic lives when stigma and dehumanization are widespread?
Perhaps it is time to balance the PFL and the medical view of autism by including a social perspective. Social Identity Theory (SIT) can help us do this.
Social Identity Theory (SIT) and why it's important
According to Social Identity Theory, each of us has a self-concept, which is a set of beliefs that we have about who we are—our sense of self. These beliefs are shaped by our personal and social identities.
Personal identity - is based on the characteristics that we believe make us unique individuals, such as our values, talents, and interests.
Social identity - is based on our membership in social groups such as families, schools, hobbies, and professions.
How we feel about these identities has a direct impact on our self-esteem and wellbeing. For example, if we have a positive view of our personal and social identities, then we are more likely to have higher self-esteem, better mental health, and greater overall wellness. This makes sense because having pride in who we are as individuals as well as belonging to positive and supportive social groups is essential for human wellbeing.
For example, social identity research by Jetten et. al (2012, 2015) shows that:
group membership can improve physical and psychological well-being
people who belong to more groups have more opportunities to give and accept help within their networks of social support, increasing well-being
social identification improves personal self-esteem because people are proud of their (positive) group memberships
increases in social identification over time were related to lower depression scores to the extent that psychological needs were satisfied, increasing an individual’s sense of meaning, control and self- esteem
The interaction between personal and social identities is important. For example, an individual who has a negative view of who they are (e.g. negative personal identity) will have lower self-esteem and this will impact their mental and physical wellbeing. However, the individual can improve their self-esteem through group membership (e.g. social identity) because personal self-esteem is positively associated with social identification (Cooper et.al).
In other words, becoming a part of a social group gives an individual access to that group’s
collective self-esteem. As long as the group’s collective self-esteem is positive, it’s members can benefit, and these benefits extend to their personal identities as well. This is exactly what we are seeing in online autistic communities where members claim autism as a positive identity—something to be proud of not ashamed.
Indeed, recent studies have reflected the changing perceptions towards being autistic. A number of studies have found that the majority (of autistic people participating in the studies) found PFL to be offensive and that Person on the Autism Spectrum and Autistic Person were rated most preferred and least offensive overall ( Bury, 2020). The use of Autistic Person is an identity first language (IFL) construct, which makes sense given how autistic communities are embracing their autistic identities.
Autism as a social group can be powerful when the group maintains a positive view of itself. Adult autism led groups are starting to demonstrate this power. These communities are providing opportunities for autistic people to connect, to support one another, to improve their understanding of autism, and to shift their negative perceptions of autism to more balanced ones. Put simply, these types of social groups are beneficial because they are offsetting the negative effects that stigma has on autistic identities and self-esteem. Research is backing this up. In fact, some studies have pointed out the importance of offering post-diagnostic education and support as one way to help develop collective self-esteem. (Corden et. al., 2021).
A note about the Biopsychosocial Model
While beyond the scope of this article, it is worthwhile mentioning the biopsychosocial model, which is another lens to view autism from. This model is perhaps the most robust to date and will likely take the lead in the future. This model considers the interconnections between the psychological, socio-environmental, and biological factors that play a role in our lives. The benefit of this view is that incorporates the challenges and struggles that innately come with autism, addresses our need for support, while not dismissing the real harm that comes with societal intolerance of those who vary from the accepted social norms.
While the medical model is not the most comprehensive approach, there is still a need for diagnosis because this is often the route we must take to get the accommodations we need or to get access to funding through insurance or government programs for things like therapy and other support services.
A balance, like that of the biopsychosocial model, is needed because diversity should not be a target of medicalization. While autistic people may need support, they also need respect and acceptance not automatic medical intervention. Medical intervention should be by choice.
PFL and the medical model have a negative impact on autistic lives – they increase stigma and dehumanization towards autistic people, which strikes a direct blow to personal and social identity which are the foundations of self-concept (how we see ourselves).
To change this outcome, we must move away from the PFL and medical model. We can no longer expect autistics to hide or to be ashamed of they are because the costs are too high—autistics are paying with their lives and souls.
We need to establish environments in which autistic identity is one that brings strength instead of disgrace, acceptance instead of discrimination, and dignity instead of dehumanization.
Moving from PFL to IFL is one important step forward because doing so is more than a simple change of language— it's a shift in how we think about and perceive autism and autistic people.
As an autistic person myself, I look forward to this change and to better days for all autistic people.
Coming up next!
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