Einstein, Newton, Charles Darwin, Tim Burton, Emily Dickinson, Bill Gates, Elon Musk, Michelangelo, Jerry Seinfeld, Satoshi Tajiri creator of Pokemon, Nikola Tesla, Leonardo Da Vinci, Steven Spielberg, Benjamin Franklin, Lionel Messi, Jane Austen, Mozart, Beethoven, George Orwell, Carl Jung, Greta Thunberg. That's a long list of famous people right there. What do they all have in common? Maybe you can tell already: they're all on the autism spectrum.
When people hear the word "autism," the typical assumption is to think of autistic people as either low-functioning or savant geniuses. These are very extreme views that are further stereotyped by movies such as Rain Man or A Beautiful Mind. That begs the question though, what is Autism really? What is the collective story behind the people that are so different from what the world is used to?
History
The word "autism" is derived from the Greek word for "self" and was first used in 1911 when Eugen Bleuler used it to describe symptoms that included social withdrawal, repetitive behaviors, and self-absorption. In 1925, a Soviet child psychiatrist, Grunya Sukhareva, had been studying similar traits in children and published her observations. Unfortunately, her findings went relatively unnoticed and would later be repeated and gain more attention in the 1940s.
In the mid-1940s, Leo Kanner in the United States and Hans Asperger in Austria described a group of children who exhibited similar symptoms, including a lack of social skills and repetitive behaviors. Kanner called the condition "early infantile autism," while Asperger referred to it as "autistic psychopathy." Hans Asperger was one of the first researchers to place a label on Autism, but he was heavily involved in working with the Nazis during the Holocaust to send autistic children to their deaths for their perceived dysfunction. Hans Asperger originated a dark and dangerous trend of stigmatization surrounding Autism, which was suppressed for much of history until it was more recently uncovered. Throughout the 1950s and 1960s, researchers focused on identifying the causes and treatments for Autism. Many theories were proposed (most disproven) and centered around the belief that Autism was caused by bad parenting or emotional trauma suffered in early childhood.
In the 1970s, the first diagnostic criteria for Autism were developed, which helped standardize the disorder's diagnosis. In 1980, Autism was officially recognized as a separate disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM-III). Until then, Autism was believed to be related to, or even a symptom of learning disability or schizophrenia—another idea which has since been widely disproven.
Advocacy - Dismantling Stigma
The treatment and perception of Autism have come a long way, thanks largely to the advocacy efforts of autistic individuals and allies. For decades, autistic people were subjected to persecution and abuse from a hostile majority that could not understand them. Autism awareness campaigns started in the 1970s by people who were not autistic, from a perspective of viewing Autism as a disease and trying to "cure" Autism. Autism "awareness" campaigns such as Autism Speaks harmful to the autistic community because their narrative promotes fear, stigma, and prejudice against autistic people. Only 1% of Autism Speaks' budget goes towards actually helping autistic people and their families, and their executives are among the highest paying in the autism world, with some exceeding salaries of $600,000. Autism Speaks talks about Autism without any representation of autistic people.
Yet, Autism Speaks' awareness campaigns had never brought attention to the massive scientific, technological, humanistic, and artistic values that autistic people had contributed to society. It wasn't until the 1990s that autism self-advocacy became organized as part of the disability rights movement. Examples of autistic community-led organizations include the Autistic Self Advocacy Network (ASAN) and Autistic Women & Nonbinary Network (AWNW). Temple Grandin is one of the leading prominent speakers and authors on Autism and animal behavior. Influential works such as The Reason I Jump, written eloquently by then 13 years old non-speaking autistic boy, Naoki Higashida, brought elucidating insights into the sensory world of experiences for non-speaking autistics.
Current Trends
Rather than spreading "awareness," rooted in the history of suppression and erasure, autistic individuals and allies started shifting the conversation towards autism acceptance, empowerment, positivity, self-actualization, and independence. There is also growing validation within the autism community regarding self-diagnosis, as virtually everyone who is self-diagnosed as autistic goes through extensive research before arriving at their conclusions, and if they go on to pursue an official diagnosis tend to receive it. Official diagnoses are frequently fraught with denial, prejudice, biases against adults or AFAB people, costly bills, and generally provide minimal benefit besides curbing disbelief from laypeople and receiving limited work accommodations, if any. However, self-diagnosis and acceptance of Autism as a label can be very helpful for autistic individuals to understand that they are intrinsically different and it is ok to be different. Autistic people, once they understand their condition, can better give compassion to themselves, immerse in the joy of their special interests, and start to heal through unmasking.
Future Prospects
Research on Autism has increased dramatically, leading to a better understanding of the condition and the development of effective therapies and treatments. The exact causes of Autism are still not fully understood, and there continues to be debate about the role of things like genetics, environmental factors, and medicine. That said, the current dysfunction-based model of the DSM is highly problematic in its ableist view, and there is plenty of room for improvement in future diagnostics. More importantly, it would be much more useful to help people with expressed needs rather than use the diagnosis as a measure of validity for a person's struggles.
How to be a Good Ally
If people could be good allies, autistic people could thrive and bring much value to society by being themselves. Autistic people frequently seek the truth and beauty of the world from unlikely places and stop at nothing in their single-minded quest to deep dive into the unknown in search of answers.
Here are tips on how to be a good ally, drawn from the website theautisticadvocate.com:
- Scale back ego.
- Allow autistic people to be themselves and be supportive; they are different, not deficient.
- Help create a safe space if an autistic person is overwhelmed.
- Ask if unsure, especially regarding touch/sensory things.
- Learn basics about Autism.
- Vast majority, if not all, of autistic people, have accumulated severe trauma due to living in an extremely oppressive world hostile to autistic people; be kind.
- Don't demand conforming to neurotypical standards of behavior (or offer unsolicited teaching/practice); masking is extremely exhausting and physically damaging for autistics.
- Avoid ableist and functioning labels, which are unhelpful; use identifies first language because Autism is an integral part of the autistic person's experience.
- Positivity: acknowledge the trauma, but empower and focus on the potential for thriving. Despite challenges, autistic people are not defined by trauma, and hope for healing and thriving exists.
- People are either autistic or not (allistic). Not everyone is on the spectrum; the spectrum refers to the variation of autistic people's experiences and expressions.
Recommended Reading
—Special thanks to Peter Hauge for curating the booklist, contributing to the research, and writing of this blog.