Hello, and welcome back to The Autistic Writer. When people come across the phrase words have power, more often than not, they associate it with famous speeches from public figures. History records many powerful orations from famous people that have influenced public opinion or social direction. Whether you think of Martin Luther King’s I Have a Dream, or Winston Churchill’s We Shall Fight on the Beaches, or any of the countless other examples, most people would admit that words have power, regardless of whether they agreed with the content of these speeches. But we don’t always understand the more subtle ways that words have power.
Psychology
The Car Crash Experiment
There is a famous psychology experiment (Loftus & Palmer, 1974) that looked into how memory can be retroactively affected by new information. In the 1974 experiment, 45 participants were shown films of traffic accidents, and then were asked leading questions about those accidents. For example, they might be asked whether two vehicles smashed into each other, or hit each other, etc.
When participants were asked to estimate the speeds at which the vehicles collided, there was a significant difference in their answers: Those who had been asked about vehicles smashing into each other estimated higher speeds than those asked about vehicles hitting each other, even though they had watched the same films.
The implications of this are staggering, particularly in light of eyewitness testimony in courts, for example.
It is common for people to think of memories as recordings in the mind, which can then be accessed and replayed. But memory doesn’t really work like that. When we recall events, we create new mental constructions of them, and psychology has shown repeatedly that our memories are changeable.
Framing Effect
A related phenomenon in psychology is the framing effect. This is a kind of cognitive bias in which people can form different opinions or conclusions based on the way information is described, even though the underlying facts are identical. The framing effect is well known and often used in advertising. A customer may be more inclined to think a food is a healthy choice if, for example, it is described as 80% lean meat, rather than contains 20% fat.
The work of Loftus and Palmer, and others, has shown that our memories and the way we think can be affected by other people’s words without our even realising. This has implications for the things we say in our everyday conversations and our social media activity, especially in unguarded moments. Our words and spoken opinions can affect other people’s thoughts and opinions in subtle ways.
These kinds of effects are not limited to the interpretation of hard facts, however.
Impression Formation
Social psychologist Solomon Asch’s work on impression formation explored how language can shape perception of personality traits. In a classic experiment from 1946, Asch presented two groups of participants with lists of personality traits for a hypothetical person. The groups were then asked to rate the personality of the hypothetical person, based on the listed traits.
Group A
- Intelligent
- Skillful
- Industrious
- Warm
- Determined
- Practical
- Cautious
Group B
- Intelligent
- Skillful
- Industrious
- Cold
- Determined
- Practical
- Cautious
As can be seen, the two lists were different only in one term: warm and cold. However, the change in that one trait had a disproportionate effect on the opinions of the two groups. The warm group rated the hypothetical person’s personality in more positive terms, with the cold group describing the person more negatively.
Words have power
The examples above illustrate one overarching point: words have the power to shape thoughts and opinions. For any marginalised or misunderstood demographic, such as autistic people, the implications of this effect are profound.
The Industry of Autism
Autism is big business. In fact, autism is a multi-billion-dollar global industry. If you Google autism, you will quickly be overwhelmed by sources espousing alleged “cures,” “treatments,” “interventions,” and “therapies” for autism. You will be assailed by advertisements for jigsaw-themed, autism-related merchandise, or by websites for organisations that claim to “support” autistic people, asking for your donations so that they can continue their research.
Treatments, Interventions, and Therapies
However, the fact is that autistic people generally reject the idea of “cures” or “treatments” for autism. Many of the so-called “therapies”, like ABA (Applied Behavioural Analysis), are highly controversial, as many autistic people have cited them as causing psychological harm (this has been discussed in detail in an earlier article).
Describing practices and procedures with benign-sounding words such as therapy has a positive framing effect on public opinion about approaches to autism, even though many autistic people and their advocates continue to claim they are unhelpful and potentially dangerous.
Merchandise
Many autistic people reject anything with the jigsaw puzzle piece design. Nevertheless, that is the design you will see on the majority of autism-related merchandise you come across, often with claims that the merchandise can be used to show your “support” for autistic people. Again, what is often a cynical money-making enterprise for the manufacturers of the merchandise is framed with positive language, despite autistic people rejecting much of it, with good reason. (The problematic nature of jigsaw iconography in relation to autism has also been covered in an earlier article.)
Research
If you are asked to donate to a charity funding “research” into autism, it is advisable to check what that research is, because numerous avenues of autism-related research have caused, and continue to cause, grave consternation in the autistic community. A high-profile example of this is the Spectrum 10k project proposed by Simon Baron-Cohen and his team at Cambridge University. Many autistic activists campaigned against this project, and it has now been indefinitely shelved. Initially, however, the project garnered a huge amount of support, including from some high-profile autistic people working in popular media, because it had been framed in very positive language.
The Autism Community and the Autistic Community
It is common to see or hear talk of the autistic community and the autism community. Sometimes, these terms are used interchangeably, but this is an error, as the two terms mean different things.
The autistic community consists of autistic people themselves: people who are autistic and who share experiences, support one another, advocate for their rights, or simply identify as part of a wider autistic population.
The autism community is broader. It can include autistic people, but also non-autistic parents, family members, carers, professionals, researchers, charities, educators, clinicians, and anyone else involved in autism. While these groups often have overlapping interests, they do not always share the same priorities or perspectives.
Views expressed by the autism community are not necessarily representative of the autistic community, and vice versa.
Who Controls the Narrative?
Historically, autism discourse has largely been dominated by non-autistic professionals and organisations in the autism community. Those groups often have different priorities from autistic self-advocates in the autistic community. As a result, the language used in public discussions has often reflected the views of non-autistic professional elements within the autism community, rather than autistic perspectives.
Most of the autism discourse from professional and charitable organisations has, over the years, described autistic people in terms of deficits or impairments. This continues to perpetuate a public perception that autistic people are faulty, broken, or incomplete human beings.
Even though it is now almost universally accepted that autism is not an illness, dubious so-called “cures”, “treatments,” “interventions,” and “therapies” are hawked at worried parents of autistic children.
Well-meaning people get sucked into buying merchandise to show their “support” for autistic people, oblivious to the fact that the jigsaw puzzle design on their purchase is regarded by many in the autistic community as a symbol of hate that portrays autistic people as incomplete humans with missing pieces, or as problems to be “solved”.
The misleading, harmful language about autism that pervades popular media works in a subtle, gradual way; a drip-drip effect worming its way into the public consciousness, ensuring that millions of people worldwide become frightened of autism.
Saying that there is a public fear of autism is not sensationalising the situation:
Historically, narratives from the highly influential organisation Autism Speaks framed the experience of parents finding out their child was autistic in terms of “grief” (Autism Speaks’ 100 Day Kit for newly diagnosed families referenced the Kübler-Ross stages of grief). While Autism Speaks no longer uses this wording, it did make its way into the public consciousness.
Autism Speaks’ grieving approach was the subject of substantial criticism from autistic self-advocates who argued the framing encouraged parents to see an autism diagnosis as something to mourn.
Autism Speaks has repeatedly backtracked on positions it has previously taken on autism (for example, vaccine causation). Unfortunately, publishing apologies and changing their position on autism does not always mitigate the damage caused by the initial message.
A disturbing example of how this influential organisation fuelled and spread unfounded public fears over autism came in their commercial, I Am Autism. This short film is still available on YouTube, but I will not post a link to it here, as a matter of principle.
The film used a particular framing method, presenting autism as an entity that speaks to the viewer in a voice-over. In the monologue, the I Am Autism voice uses language such as “I will make sure your marriage fails,” and “I will bankrupt you.” It goes on with statements like, “I will make sure that every day you will wake up and cry.” This is a powerful and disturbing framing effect, which is part of a wider negative narrative that has driven public fear of autism.
Parents who receive an autism diagnosis for their children are often anguished, some grieving as though they have lost their child, because they have absorbed various negative narratives of autism. One of the most subtle and insidious ways that language disseminates a negative understanding of autism is the use of person-first language.
Person-first Language
Person-first language is often used by people who believe it is a politically correct way to describe disabled people. They claim it is better to say “person with blindness,” or “person with deafness,” or “person with autism,” than “blind person”, “deaf person”, or “autistic person”. They claim that a disability does not define a person, and so should not be the first part of any description of the disabled person. Unfortunately, they forgot to check with disabled people first.
While there are some people in the autistic community who prefer to identify as with autism, or as having autism, the vast majority prefer autistic person, which is identity-first language. This rejection of person-first language isn’t limited to autism. Numerous disability organisations have either publicly rejected person-first language (the Autistic Self-Advocacy Network, the National Federation of the Blind, the National Association of the Deaf), or encourage the use of identity-first language (the National Autistic Society, for example). Many disabled people think disability does in fact define the person. This is a particularly prevalent view among autistic people.
What is Wrong With PErson-First Language for Autism?
Autism is not something that can be removed from an autistic person, like taking off a hat. We autistic people do not “have” autism in any way that could make sense, because autism is not a thing that can be pointed to, held, weighed, or pictured. Autism is everything about an autistic person. But when person-first language is deployed, it can combine with other problematic language to devastating effect.
Problematic Language
Once it is said that someone “has” autism, it combines with the negative or deficiency-based language used to describe autism in the media and popular culture. Some of the terminology used around autism has one meaning in a technical sense, but another meaning in a colloquial sense, and that is where the problem starts.
For example, autism is diagnosed by clinicians. The word diagnosis is colloquially associated with illness. Technically, it can mean any process used to get to the root cause of an effect, and then the description of that effect. But most people, when they hear “diagnosis”, think in terms of illness. Autism is not an illness; it is a neurological difference. But the use of person-first language alongside talk of diagnosis, “She’s been diagnosed with autism,” has a framing effect on the way people think about autism.
Use of the term autism spectrum disorder in diagnosis exacerbates the problem, because again, the word disorder has negative connotations colloquially. This combines with an onslaught of misinformation in popular culture about autism; myths that suggest autistic people are dangerous, that we lack empathy, that we are incapable of love, that we are violent, and on and on.
These myths and negative language choices combine yet further with the big business of the autism industry that insists autistic people need “cures, therapies, treatments, and interventions”.
The words cure and therapy evoke thoughts of illnesses and problems. The word intervention evokes thoughts of addictions and anti-social behaviour. This is the kind of language the non-autistic autism community drip-feeds into the public consciousness, creating a myth that autistic people are in some way broken, faulty, or fundamentally lacking in human qualities.
I am not claiming that there is a conspiracy to create public fear of autism. The public fear arises naturally as a result of the negatively framed language that has become common in relation to autism.
Public fear of autism helps create the market of people willing to pay for so-called “cures, therapies, and interventions.” Again, there is no conspiracy to make this happen; it is simple cause and effect. If there were no public fear of autism; if autistic people were viewed as equally valid as the rest of the population, there would be no call for research, or alleged cures, or therapies.
The amount of money generated by the autism industry annually is colossal. Many careers are based in the autism industry: researchers, therapists, workers in organisations like Autism Speaks, and so on. These careers are held by people who, like anyone else, have financial pressures; bills to pay and lifestyles to finance. Many parts of the autism industry exist because autism is widely regarded as a problem requiring intervention. There is clearly, then, an unfortunate potential for financial conflict of interest in professions that rely on a demand for autism research; a demand fuelled by ill-founded public fear of autism.
Language matters; words have power
When autistic advocates and activists talk passionately about the language which is used to describe us, we are not being petty or pedantic. We simply understand the power that negative language has to shape and maintain public myths and prejudices about autism and autistic people.
While the public narrative around autism continues to be controlled by forces which answer to pressures or incentives that are not aligned with the needs of autistic people, there is a power imbalance. This imbalance helps maintain the social inequality that blights the lives of autistic people in education, workplaces, healthcare, and social settings.
Thanks to the internet, autistic people are now talking to each other in massive numbers online. We are sharing our experiences, comparing notes, and emerging as a true autistic community. It is my belief, my hope, and my aim that by taking control of the public narrative around autism, we can work to dispel the misinformation and myths, and look to a future in which there is true acceptance of autistic people.
That’s all for this time. Take care.
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