What do you think of when you hear of campaigns such as Breast Cancer Awareness Month, Glaucoma Awareness Month, or National Stroke Awareness Month? Obviously, these are tragic things that need to be prevented. Now what about Autism Awareness Month? In our culture, we have Black History Month and LGBT Pride Month to celebrate different cultures, but yet Autism is treated as something which needs to be cured. Autistics tend to view autism as an integral part of who we are. Imagine what it’s like to have an entire month dedicated to campaigns to “fix” people such as yourself, as if your very existence was a problem to be solved.
Autism is as old as humanity itself, but widespread recognition of it is quite new. It wasn’t discovered until 1943. Since then, as awareness has rapidly grown, so too have two other things: the number of people diagnosed, and stigma of autism. Given the ways society describes us, the fear of autism shouldn’t be a surprise. Think about how autism is usually described: “Autism epidemic.” “Autism Spectrum Disorder.” “Diagnosed.” We are described as “having autism,” which is used in much the same way that someone “has the flu” or “has cancer.” Discourse surrounding autism is saturated in the language of disease and deficit.
So, what happens when a group of people are described by society in such ways? History already provides some examples. Like autistics, LGBT people have also been described by society with the language of pathology, and there are some important parallels in the experiences of both groups. Both have been in the American Psychological Association’s Diagnostic and Statistical Manual of Mental Disorders. LGBT people have been subjected to so called “conversion therapy.” This is an abusive practice that employs behaviorist techniques first developed for use on autistic children, in a similarly abusive therapy known as “Applied Behavioral Analysis.” People from both groups have been disowned, abandoned, or murdered by people who’ve been taught by society that what they are is something that needs to be cured.
In some parts of the world, society is finally beginning to learn that acceptance of LGBT people has far better outcomes than being treated like a disease. Yet for the most part, society has yet to take such an enlightened view of autistics and other neurodivergent people. This awareness without acceptance has had some tragic results. Here are a few examples:
About 500 disabled children are murdered by their parents each year, and a large percentage of them are autistic. When this happens, it is often described as a “mercy killing.” When one of these events makes the news, people come out in support of the parent. Parents who kill their autistic children are often given more lenient jail sentences.
Autistic people are 10 times as likely as the general population to die by suicide. About 70% of us consider taking our own lives at some point. Recent studies show that the largest predictor of suicidality in autistic people is what is known as “masking,” in which we attempt to suppress our natural autistic behaviors in an effort to fit in.
In recent years, a new trend has developed in which after mass shootings, the media often speculates that the shooter might have been autistic. The Parkland Florida shooter’s lawyers tried to use autism as a defense. I write this not long after the shooting in Christchurch, and I fully expect to hear similar things about him. In reality, autistic people are more likely to be the victims of violence than the perpetrators.
Many autistic people who are capable of successfully masking their autistic behaviors at work choose not to disclose their autism to employers or co-workers. This is because far too many of us face workplace discrimination for being autistic, from harassment, to being passed over for promotion or being fired.
The Neurodiversity Paradigm
Clearly, awareness alone has not been working out so well. We need to move beyond autism awareness to autism acceptance. To do that, we need to change how we think about the subject.
Consider the following statements: “I am proud to be autistic”, and “autism is a disability”. Does that sound like a contradiction? If so, you may believe in what is known as the medical model of disability. This is the notion that there is some hypothetical “normal” state, and that every physical or cognitive difference that causes someone to deviate from this norm is something that needs to be fixed or cured.
The alternative to this is the social model of disability. This is the idea that while some differences may cause individual limitations or impairments, “disability” is something that is done to a person when society fails to include them despite those differences. For example, blind and visually impaired people, the deaf and hard of hearing, and those with mobility impairments can all be fully functional members of society. However, when society refuses to meet their needs, they become disabled. This can happen when public places don’t have braille signage, when communication happens only verbally and not in writing or sign language, and when places aren’t wheelchair accessible. When society makes such decisions, it disables those who need these accommodations.
Under the social model, autism is also a disability. Like anyone else, we have our own sets of strengths and weaknesses. However, due to the medical model and decades of fearmongering awareness campaigns, society all too often refuses to accept and accommodate us. In this way, society disables us. For society to move towards acceptance, it must adopt the social model of disability.
Another concept that is important for autism acceptance is neurodiversity. This is the idea that there is no “normal” mode of human cognition, but that autism, ADHD, dyslexia, dyspraxia, etc are all part of the normal spectrum of human diversity, just as ethnic background, sexual preference, and gender identity are all normal parts of human diversity.
Autistic people have always been here. History is full of examples of artists and scientists who were likely autistic, such as Alan Turing, Einstein, and Mozart. We as a society wouldn’t be where we are without the contributions of autistic people in the arts and sciences. Based on current estimates, we are about as common as redheads. Given how important autism has been to society, it makes no sense to view it as a defect instead of a natural part of human diversity.
Some Tips For Supporting Autistic People
In addition to the social model of disability and the neurodiversity paradigm, I’d like to leave you with a few practical tips for how to support the autistic people in your life:
An acceptance of neurodiversity should shape the language anybody uses when talking about us. The vast majority of autistics don’t like phrases such as “person with autism” or “has autism.” We instead prefer “autistic person” or “is autistic,” as the former is how you would talk about someone with a disease. If you have ever encountered so called autism “professionals” who work in mental health, you’ll find that they were trained to use the former, deficit based terminology. This is because they are still stuck in the medical model of disability. I encourage you to use the terminology that embraces autistic identity.
Listen to us. We are the only true experts on the topic of autism. There are so called “experts” who refuse to listen to us, and non-profit organizations that claim to speak for us, without consulting us or having autistic people in positions of leadership. Such people and organizations are perpetually spreading misinformation and fear about autism. Instead, listen to and support organizations such as the Autistic Self Advocacy Network, which is lead and staffed entirely by autistics.
Understand that while everyone has both strengths and weaknesses, autistic people tend to have both strengths and weaknesses that are more pronounced than the general population. Some common strengths are the ability to hyperfocus on topics or problems that interest us, the ability to remember vast amounts of information about our interests, and heightened attention to detail. On the other hand, we deal with extreme hypersensitivity to various types of sensory inputs (such as what you’d find in an open floor plan office), difficulty with neurotypical body language, and coping with abrupt changes to plans or environments.
Along with our strengths and weaknesses, it is important to understand that we often communicate in ways that are different than our non-autistic peers. Our style of communication tends to be direct and explicit, and we do best when others communicate with us in a similar manner.
Autistic people tend to find functioning labels such as “high functioning autistic” and “low functioning autistic” to be demeaning and lacking in nuance. These labels come from the medical model of disability, and imply that there are both good and bad kinds of autism. People who use such labels would call me “high functioning” because I have a high paying job and live independently. They wouldn’t consider the fact that my 1st grade teacher insisted that I was mentally handicapped and incapable of learning, or that I was pretty much illiterate well into middle school. They wouldn’t consider that I engaged in self-injuring behavior as a child because I had yet to develop coping skills to deal with the overwhelming sensory inputs around me. None of those things fit the stereotypes of “high functioning.” Meanwhile, there are so-called “low functioning” non-verbal autistics who have a higher level of education than I’ll ever obtain. Levels of functioning can change on a daily basis, due to changes in circumstances, environment, or just stress levels. In reality, “high functioning” means someone whose needs are ignored, while “low functioning” means someone whose abilities are ignored.
A common myth is that we lack empathy, but nothing could be further from the truth. We can empathise with others, and some autistics experience an almost debilitating form of hyper empathy. It is true that we often struggle in understanding your body language, but then again, you struggle to understand ours. Like most things, empathy requires practice. We have a lifetime of experience practicing empathy toward people who are not like us, but most non-autistics seldom need to empathize with people who are neurologically unlike themselves.
Lastly, almost all public discourse around us focuses on white male children. The needs of autistic children are important, but most of us are in fact adults. We do not disappear in a puff of blue smoke on our 18th birthday. Also, we are not all white and male. Women and people of color are far more likely to be under-diagnosed, in large part due to the various prejudices in the fields of mental health and research.
In conclusion, autistic people don’t need a cure or your pity, and we’ve had more than enough so called awareness. What we need is understanding, respect, and acceptance.