Ayman Eckford—autistic person, creator
of the Autistic Initiative for Civil Rights and the
Neyroraznoobrazie v Rossii (Neurodiversity in Russia) website
What is neurodiversity?
Every society has its own ideas about what is good and what is bad, what is normal and what is not. Some of these notions help us; others hinder us. Often, social attitudes are stereotyped, irrational, and based on prejudices passed down from generation to generation. Very often, the victims of these prejudices are those who differ from the majority.
This kind of exclusion and division into castes, as it were, has always existed. This is partly due to a universal fear of the unknown, the rejection of those who are different, and a desire to preserve the existing status quo. People are not always ready to change a familiar and comfortable worldview. Society needs time to reassess its dominant principles and norms, so changes often occur gradually and do not immediately resonate with the majority of people.
For example, some scientists in the nineteenth century considered women who were interested in science to be “abnormal” and that scientific research led to infertility. Today, theories like this seem absurd even to the most conservative of “experts.” Let’s take another example: at the beginning of the twentieth century, homosexuality was considered a disease, even though homosexual orientation does not cause harm either to homosexuals themselves or to the people around them. Fortunately, by the end of the twentieth century, homosexuality was no longer believed to be such a disease. As can be seen from these examples, our understanding of societal norms is conditional and unstable.
Another type of difference, long rejected by society, concerns neurological characteristics. Brain function may differ from person to person, just like height or skin color. Diversity in the structure of the brain is called neurodiversity. It would seem to be a simple and obvious fact, but most people refuse to recognize neurodiversity as a type of natural human diversity. A person is believed to be “normal” and “complete” only when they diverge minimally from a particular neurological “norm.” This currently dominant approach is called the pathology paradigm.
In recent decades, the neurodiversity movement has gained strength, promoting the “neurodiversity paradigm”: in this model, only those forms of neurodivergences that prevent people from living—in other words, that cause a person suffering—are considered to be diseases. For example, epilepsy is a disease because people with epilepsy suffer from seizures that can be life-threatening. Obsessive-compulsive disorder (OCD), which manifests in the form of obsessive thoughts and “rituals,” is also a disease. Both epilepsy and OCD have biological prerequisites. Both conditions can be called neurodivergences, but in reality, both epilepsy and OCD are diseases because they cause people suffering and hinder a fully functional way of life. In addition, these conditions are easily separated from a person’s underlying personality.
There are other neurodivergences, such as autism, which are officially listed as diseases and/or disorders, though in actuality, they cannot be considered as such. Today, for example, every hundredth person born is considered ill simply because they were born autistic. But many autistic people—from Ari Neumann, the first openly autistic presidential appointee in the history of the United States and non-autistic people like Amy Sequenzia, a well-known autistic activist, populariser, and author of the Non-Speaking Autistic Speaking blog, to Mel Bаggs, an autistic woman, author of articles and videos called “In My Language” who taught thousands of people around the world about non-speaking people—believe that that autism is not a disease. The fact is that autism is a neurodivergence which cannot be separated from a person’s personality. Autism affects how a person perceives the world around them, how they think, how they communicate, what they are interested in, what is easy for them, and what presents a challenge… If you compare a person’s personality to a computer, autism is not a system error; instead, it is an entirely different operating system. If you know a little bit about how a computer works, you understand that its operating system affects an enormous number of things. In fact, autism permeates all areas of life: if you “remove” a person’s autism, they simply cease to be themselves.
This is why I, like most proponents of neurodiversity, use the words “autistic” and “autistic person” rather than “person with autism.” I think it’s important to emphasize that autism is an essential part of us autistic people.
In addition, autism is not a disease because, as previously noted, a disease causes a person suffering in and of itself. If a person is hindered not by their condition but by societal discrimination or a lack of inclusive environments, then the problem is not in that condition but in society. This is the essential difference between illness and disability. Disability is a social construct. If a person has a disability, it means that society is not adapted for people with such characteristics of the body or mind and that something must be done about it (such as creating an accessible environment). Therefore, the concept of disability includes both diseases that prevent people from living, and conditions that are not negative in and of themselves. For example, if there were a seeing person in a world full of blind people, they would be considered disabled, as their environment would not be suitable for the sighted. However, the ability to see is not a disease. The same applies to autism. If the majority of people in the world were autistic, society would look very different and be built on different principles. In such a society, those we used to think of as “normal” would now be considered “sick.” What’s more, if everyone had obsessive-compulsive disorder as I do, I think it would have a negative impact on the state and development of our civilization.
Why is it important to see the difference between neurodivergences and illnesses?
The acceptance of certain neurological differences that we currently considered diseases (but are not actually so) helps people with these neurological differences better understand themselves and stop trying to “overcome” a significant part of their personalities. This reminds “ordinary” people of how much our lives are influenced by our ingrained cultural attitudes. Such efforts will help society take a different perspective on art and the ways of life, communication, and thinking that are acceptable and help separate phenomena that cause direct harm to people from those that may at first seem “strange” but are essentially harmless.
In addition, understanding the difference between neurodivergences and diseases will help us better allocate the resources we have available to us. For example, if funds that we spent on finding the “cause of autism” were allocated to create an inclusive environment in hospitals, the life expectancy of autistic people would increase (currently, it is 20 years lower than for non-autistic people). If more funds were spent on training human resources specialists and teaching staff, most autistic people would be able to get the same education as non-autistic people; therefore, the unemployment rate among autistic people would significantly decrease (meaning that autistic people would need less social support).
On the importance of presumed competence
In any conversation about helping autistic people, it is very important to listen to what the autistic people themselves are “saying”—including those who do not speak verbally but can instead use alternative means of communication. Non-autistic people do not experience the same perception of the world or discrimination as autistic people do. As a result, even the best specialists do not know the needs of autistic people as well as autistic people themselves do. The same is true for parents, teachers, tutors, and other “intermediaries” for these autistic people.
There are cases when non-speaking people were denied medical help or considered “meaningless shells without a soul” simply because they could not express their thoughts verbally. Even when these people tried to communicate their needs in other ways, their attempts were ignored. Such an approach is unacceptable: it can cost a person their health or even their life. This is why there is such a thing as the “least dangerous assumption” in disabled communities: if you don't know how well a person understands what is happening, the least dangerous thing for them is if you consider them to be competent. In this regard, it does not matter whether you are talking about diseases or neurodivergences. No matter what, you have to assume the person's competence and build a relationship with this person on the basis of this assumption.
How to talk to autistic people (and those with other neurodivergences)
Many people who interact with people with disabilities, like relatives, teachers, doctors, and museum workers, try to apply “non-disabled” standards to them. For example, museum employees will often ask autistic people to remove their headphones, even though headphones are an effective protection against sensory overload. Autistic people are often forced to maintain eye contact, even though it is difficult for them to simultaneously listen to a person and look at them, all while maintaining a conversation. This list of mistakes can be continued, but the most important point is as follows: no matter how “strange” you think a person's behavior may be, if it does not interfere with others and or injure the person in question, you should not interfere with it. First of all, you need to recognize that a person has the right to differ from the abstract and arbitrarily defined norm.
After that, acknowledge your privilege. Remember that because of existing stereotypes, autistic people (and people with other neurodivergences) have not been able to participate in the creation of a dominant culture; therefore, all of said culture's standards are designed for people like you. You don't need to learn to live in a society where everything is oriented toward people with a different way of thinking. Your way of thinking and your problems are clear to most people. As a result, if you want to be a good ally to autistic people (and people with other neurodivergences), pay attention to the things they find difficult yet, which you can easily do (and vice versa).
Another problem of interactions with neurodivergent people arises due to their “invisibility.” Despite the huge number of neurodivergent people in the world, they remain invisible. This is partly due to the lack of an inclusive environment: for example, many autistic people find it difficult to visit public spaces or large events if the building lacks a special “quiet room.” Non-speakers cannot even participate in discussions unless there are alternative means of communication available. As a result, it is very important to listen to advice from neurodivergent people about creating an inclusive environment, rather than supporting a culture in which they might be “ashamed” to talk about their unique traits.
Finally, people often try to reduce all of a person's experience to their particular neurodivergence. But even such a neurodivergence as autism does not define a person in their entirety. All autistic people are not alike, and each of them is a complete individual. It is absurd to evaluate an artist's picture by talking exclusively about the artist's autism or to assume that a person holds certain views simply because they are autistic. This does not mean that a person's autism should be ignored. It is necessary to recognize that any individual's personality is multi-faceted and that the experience of different people (even with the same neurotype) differs widely; therefore, we must try to see each person as an individual.
Perhaps the two main principles of interaction with autistic people can be reduced to the following axioms: “Nothing for us without us” and “Treat people's bodily, sensory, and cognitive needs the way you would want them to treat yours, whether or not you understand why they need it.”
The first axiom is one of the principles of the neurodiversity movement and many other minority rights movements. Sometimes it sounds like “Nothing about us without us.” Before you talk about people you don't look like or are trying to help, listen to them first yourself. Listen to their requests because you might accidentally insert your stereotypes into your work or communication with them. Understand their needs and trust them to understand their experience—especially if you want to help, because your experience and perception are different from theirs. Many things that you take for granted may be strange and incomprehensible to them (and vice versa).
The second axiom comes from a statement by Nick Walker, one of the ideologists behind the neurodiversity movement. He calls this statement the “Golden Rule of Neurodiversity.” Indeed, this formula is a much better measure of the principles of communication with neurodivergent people than “do unto others as you would have them do unto you.” The needs and perceptions of another person may differ dramatically from yours. For example, some autistic people can hardly talk on the phone, while for you, this is a much more convenient way of communicating than written correspondence. Would you like it if you weren't allowed to talk on the phone? If so, why would you ignore an autistic person's request to communicate in writing?
One more thing: remember that you will make mistakes and that this is normal. Even neurotypical (or “ordinary”) people sometimes find it difficult to understand each other. If they didn't, why are there so many misunderstandings and disputes among people who share the most widespread way of thinking, and why are books on popular psychology so popular? Never mind communicating with those people whose brains function according to the principles of a different “operating system!” You will make mistakes in communication. You will make mistakes in creating an inclusive environment. It is important to recognize these mistakes. Autistic people also make frequent mistakes, but for them, these mistakes are considered a pathology, while yours are the norm (although in general, making any kind of mistake is normal). So make mistakes, pay attention to criticism, learn, and go forth on the path to creating a truly inclusive environment together with autistic people.
Additional information about neurodiversity
- Temple Grandin, Thinking in Pictures (along with a film adaptation, Temple Grandin);
- Donna Williams, Nobody Nowhere: The Extraordinary Autobiography of an Autistic Girl;
- Iris Johansson, A Different Childhood;
- Naoki Higashida, The Reason I Jump;
- John Elder Robison, Look Me in the Eye: My Life with Asperger's.
Articles by autistic people about autism:
- Jim Sinclair, ‘Don’t Mourn for Us’ and ‘What Does Being Different Mean? (the neurodiversity movement began the neurodiversity movement);
- Nick Walker, ‘Autism and the Pathology Paradigm;
- Mel Baggs, ‘Autism in Adults and Teenagers’;
- Emma Zurcher-Long (13-year-old non-speaking autistic person), ‘I’m Emma’;
- Henry Frost (a non-speaking autistic teenager who stood up for his right to go to a regular school), ‘Ten Things You Need to Know’ (there are actually 18);
- Amy Sequenzia (non-speaking), ‘Celebrating My Life’ and her interview on how she speaks with an aide;
- ‘You don’t speak for low-functioning autistics’;
- Rudy Simone, Aspergirls: Empowering Females with Asperger’s Syndrome (a work dedicated to the unique characteristics of female autism).
Other works in English:
- The Real Experts: Readings for Parents of Autistic Children — a book by our expert Michelle Swan (who still used the surname Sutton at the time) is suitable both for parents and for specialists;
- Loud Hands: Autistic People, Speaking — a collection of articles about autism, written by autistic people;
- Typed Words, Loud Voices: A Collection — a book written by autistic people who use alternative forms of communication;
- What Every Autistic Girl Wishes Her Parents Knew — a book written by autistic women that explains the unique elements of female autism not only for parents, but everyone with an interest in the subject;
- Nerdy, Shy, and Socially Inappropriate: A User Guide to an Asperger Life — the life story of an autistic woman;
- Thinking Person’s Guide to Autism — everything that you need to know about autism from autistics, parents of autistic children and autism specialists;
- Books from Autonomous Press;
- Neurotribes: The Legacy of Autism and the Future of Neurodiversity — the history of the study of autism and the future of neuroscience;
- Helpful articles for therapists and psychologists who work with autistic people. https://autisticforcivilrights.com/2017/10/04/