What do you picture when you think of someone who has autism? Do you think of someone with a special talent like Raymond Babbitt from “Rain Man?” Is it the socially awkward computer nerd working at a Silicon Valley tech startup? Or is your idea of autism the individual who has no speaking abilities, rocks in a corner and has self-injurious behavior? Autism has been gaining a deeper presence and awareness in society. There is a greater presence of autistic voices out there today than over 10 years ago. It is beneficial that society is becoming more welcoming of autistic voices. However, there still seems to be a narrow understanding of autism, despite it being cast as a spectrum of conditions.
I read a lot of articles about autism written by self-advocates as well as non-autistic experts and parents. From reading these articles, there still seem to be assumptions made about autistic people. My experience does not fit neatly with some of the common descriptions of autism. I want to dispel some of the assumptions and stereotypes and talk about how my experiences do not fit into each these myths.
1. People with autism have a special talent.
There seems to be an idea embedded in people’s heads that autistic people have some special talent. Autistic savants seem to attract the most mainstream media attention because of their extraordinary gifts and abilities. However, not every individual on the spectrum turns out to be a savant. In fact it is estimated that 10 percent of individuals on the spectrum have savant abilities. This is a very small number of autistics who present with such special talents.
I am no genius, but I was able to attend and graduate college with good grades. I self-published a novel about my experiences living with autism and am part of the small minority of those on the spectrum who manage to hold down a full time job at a special needs school. My strengths include speaking in front of people about my experience with autism, as well as having a strong sense of social justice and believing everyone is equal and deserves opportunities to live a good quality of life regardless of inherent characteristics. My point is that you don’t have to be a genius or have a special talent to contribute to society. Every individual on the spectrum, including those who are nonverbal, has something they can contribute for the betterment of society.
2. All autistic females are good at camouflaging.
Many articles suggest autistic girls are good at camouflaging and have fewer repetitive behaviors than autistic boys. While this raises awareness of how autism can look different in girls, which ultimately leads to better identification of girls on the milder end of the spectrum, it is important to remember not to apply it broadly to the experiences of all autistic woman and girls.
I am one of those autistic girls who were not good at mimicking the behaviors and mannerisms of my typical female peers. As a child, I had a lot of visible traits such as jumping, toe walking and the like. I showed no desire to socialize with other people, and instead showed fascination with various objects such as pens and a tail of a rocking horse as a child. I had and continue to have a lot of “restricted interests” such as Hello Kitty, Disney and other cartoon characters. Luckily, my inability to camouflage led me to get diagnosed at the age of 4, which enabled me to get the right support to thrive in school and beyond.
When I share with people of the fact that I was diagnosed in childhood, they are often shocked that I was able to get a diagnosis so early, because so many girls are overlooked for autism. While I have learned various social skills that make it possible to camouflage a little bit better, I still have obvious autistic traits I had as a child such as jumping and hand flapping. My experience with autism shows there is no universal “look” to autism in females.
3. Autism is a disorder that primarily affects white/Caucasian people.
When you see autistic individuals represented at conferences or the media, they are more often than not of the Caucasian race. This is because minority children are less likely to be identified as having autism at an earlier age than white children. As an Asian-American on the spectrum, it never occurred to me until recently that I am one of the few autistic self-advocates who is also a person of color. At schools, community events, conferences as well as social skills groups, the majority of the autistic people I have met are white. The lack of attention paid to autistic people of color makes the general autism community uneducated on the intersectionality between disability and cultural values that are specific to each ethnic group.
In my own experience, sometimes there is a cultural/language barrier between my grandmother (who speaks Japanese mostly) and myself, which results in misunderstandings in terms of my behavior or how my disability affects me. Sometimes I feel she doesn’t respect when I need personal space or when I am upset about something. It is hard to communicate this to her because her English is not too good. I am sure other autistic people of color face some of these issues with their family members because of cultural barriers between generations. I am lucky that my parents were very open about my diagnosis, which enabled me to break free of cultural stigma and become one the few self-advocates of color.
The predominantly white autism community needs to do more outreach to communities of color so there will be more equity in the distribution of resources to these families. We need to have more autistic people of color as self-advocates on boards of various disability organizations so they can get their voices heard. Autism affects individuals of all races and ethnicities and it is not an exclusively “white disorder.”
4. You either need intensive supports or no support at all.
When reading articles or blog posts by nonautistic parents and some self-advocates, they often assume autistic people fall into one of two modes of functioning when it comes to support needs: you either need 24/7 supports or you need minimal to no support. A lot of programs and state agencies allocate supports based on those two concepts. The truth is, there are a lot of autistic people who are in between “needing intensive support” and “needing minimal to no support.”
I am one of those whose direct support needs happen to fall in the middle. There are moments in my life where I can be independent without supervision, such as at work and home. I can navigate the bus system pretty much by myself (I need someone to accompany me when learning a new route until I master it) and can hang out with a friend without a support person accompanying me. However, I don’t drive and need help with daily living skills (e.g. cooking, cleaning) as well as running errands such as grocery shopping and doctor’s appointments. I also need help accessing my community for social and recreational activities and meeting new people since I don’t have a lot of friends. This is why I employed a mentor/companion to get me out of the house and into the community to give me an opportunity to practice social skills. To presume that autistic people either have “high support needs” or “low support needs” is doing a disservice for people like me whose direct support needs fall somewhere in between.
It is also harmful to presume support needs based on how an autistic person communicates. If you speak through your mouth parts, people automatically assume you have minimal support needs because you have learned enough social, coping and life skills to blend in to neurotypical society, while those who are nonspeaking are presumed to need significant supports because they present “more visibly” than someone like myself. Just because an autistic child or adult speaks using their mouth doesn’t mean they don’t face communication challenges or they have the ability to manage important tasks in their daily lives such as grocery shopping, completing homework in a timely matter etc. We need to stop making assumptions about support needs based on superficial factors such as IQ or level of speech. Instead, get to know the person on the spectrum before determining what supports that they need.
5. Autistic people like anime, computers, video games etc.
There seems to be a
stereotype about autistic people’s “intense interests” revolving around computers, math/science, video games or anime. In fact some meet-up groups specifically for autistic people tend to circulate around these specific interests. While it is common for individuals on the spectrum to have interests in these specific things I just listed, autistic “special interests” are as diverse as the spectrum itself.
I have no interest in anime, computers or video games. My special interests include Hello Kitty, Frozen, Disney Princesses, My Little Pony and other characters designed for children. However, it is hard to find an in person meeting group surrounding my special interests. The only sense of community I seemed to find in regards to these interests is on social media sites such as Instagram. This makes me feel alienated from both communities, because it is hard to find others who have these common interests in real life.
That being said, autistic people have specific interests in many different areas besides computers or anime. Some have multiple special interests instead of being fixated on one specific interest. No interest is too childish or bizarre. An autistic person’s fascination doesn’t have to turn into a career for it to be worthy. Like any human being, autistic people’s special interests make up their unique personalities.
The five assumptions I just listed are some of the ideas that float around the autism community. The message I want people to take away is that there is no “look” to autism in terms of behaviors, traits, interests etc. It manifests itself in different ways. No two people’s experience of living with the disorder will be the same. Therefore, it is important to remember not to make broad statements regarding what autism is. There are stories yet to be told, and our knowledge is constantly growing because we are more open to hearing experiences from self-advocates across the spectrum than ever before.