Autism Awareness/Acceptance Month Interview Series #1: Amythest Schaber

Interviewed By: Suzanna Chen

Edited By: Harvi Karatha, Eeman A

1. Can you briefly introduce yourself to our readers at Detester Magazine?

Hello! My name is Amythest Schaber, and I also go by Myth. I am an autistic, multiply-disabled Métis nonbinary person. (*Amythest uses they/them pronouns).

I am a writer and advocate, and I became involved in autism and disability advocacy in 2013 when I began my tumblr blog “neurowonderful”. My most well-known work is a series of educational YouTube videos called “Ask an Autistic” that I produced from 2014 to 2016. These days I do a lot of writing, playing D&D with my friends over the Internet, and hanging out with my two very good cats.

2. Autism has long been either misunderstood or disregarded by the non-autistic population. As an autistic person, what are some of the most hurtful yet common misconceptions about autism?

A common and hurtful misconception about autistic people is that we are not capable of the full range of human emotions. Either we are regarded as somehow incomplete and not fully human—incapable of love or sympathy for others, or thought to be lacking true awareness about our own selves or the world around us—or we are put on a pedestal. Autistic people are not any less than anyone else, and neither are we angelic beings that don’t experience negative emotions or are somehow impervious to learning and perpetuating the same racism, sexism, ableism, homophobia, transphobia, and other injustices that we all grow up surrounded by.

Another misconception, and one that perpetuates even among those who should know better (such as professionals who assess children and adults for autism), is that autistic people do not have the same need for community and connection that other people do—[that] we do not feel loneliness or desire personal relationships. I have heard from many autistic people who have had their autistic identity invalidated purely on the basis that they have friends or a romantic partner.

Why are they harmful?

Any misconception empowers those who marginalize us. If someone is less than fully human, then the inviolable rights afforded to “real people” don’t apply to us. If we are thought to lack awareness of the world around us, to not understand our own rights, to not feel physical or emotional pain, or to be incapable of love, then it is so much easier to discriminate against us, to hate us, and to hurt us. When autistic people are considered less than fully human, it becomes acceptable to harm us—harming in the name of “fixing” us is even encouraged. When [the] autistic life is considered a worse fate than death, then no method is too harsh and any amount of abuse to the impossible end of “curing” us is permissible.

On the gentler but no less insidious side of dehumanization, making autistic people out to be angelic, childlike, or [extraordinarily] pure still “others” us—often [contributing] to the infantilization of autistic adults.

While acknowledging the incredible diversity on the spectrum, are there definitive ways that allistic people shouldn't act around their autistic peers?

If someone tells you that they are autistic, do not say “sorry”. Simply say, “Thanks for telling me.” If it feels right, you may also ask, “Is there anything else you’d like me to know about that?”, or “Is there anything I can do to help you be more comfortable here?”

If someone that you are sharing a space with is visibly autistic—rocking [and] swaying, making atypical facial expressions[,] exhibiting a lack of facial expressions, repeatedly moving their hands, [repeatedly] manipulating an object, or making vocalizations—please do not stare. Regardless of how “aware” someone looks to you, do not talk about that person as if they cannot hear you.

Presume competence always and speak to autistic people as you would [to] anyone else. Some autistic people use methods other than spoken speech to communicate, and some patience may be required to give [respect while] listening to us like you would give [to] anyone else. And absolutely do not speak to us in the same tone of voice you would for a small child or a dog—unless the autistic person is in fact a small child.

And finally, believe us when we tell you what we need. Because autistic people process sensory input differently than non-autistic people do, there are some things that don’t bother you at all but that may distract, overwhelm, or hurt us. If an autistic person asks you for an accommodation to their environment that you can provide, please do so without making us feel the need to explain why we need the overhead lights turned off, the music turned down, for only one person to speak at a time, and so on.

3. Neurodiversity is a newly emerging concept that the autistic community has largely embraced. What does neurodiversity mean to you?

Neurodiversity is a biological fact. In the same way that people’s bodies are remarkably and wonderfully varied, so are our brains. The neurodiversity movement is the movement of working towards justice, full inclusion, acceptance, and celebration for people of all neurotypes. For me, the neurodiversity movement means freedom, love, and hope for a future in which all bodies and all brains are respected, honoured, and accommodated.

How should the non-autistic population perceive neurodiversity and people who identify as neurodiverse?

Neurodivergence is when someone’s lived experience in their body-brain and within our society is atypical in some way. Autistic people, people with ADHD/ADD, people with depression, schizophrenic people, and anyone else with a neurological condition or marginalized neurotype is neurodivergent. But the fact of neurodiversity is that every person is unique, and every brain is different. While many of us share similar experiences and some core attributes that we link together (like in the case of this neurotype we call autism), every autistic person is still unique—[just like] every non-autistic person. So, I would like for non-autistic people to consider that while some people are neurodivergent, humanity as a whole is neurodiverse, and there is great beauty and strength in that diversity.

4. What are your opinions on self-diagnoses of autism?

The medicalization of autism is a thorny issue, and diagnosis itself is a complex topic that intersects with many areas of privilege and marginalization—such as race, gender, and class.

When an autistic adult receives an official diagnosis of autism, the first step on that path is often self-diagnosis, and in that case, what follows is simply an (often expensive, always stressful) validation of that initial self-insight. But professional diagnosis is not a possibility for every person. Not everyone has the resources or the inclination. There are many communities, such as the Black and Indigenous communities, that mistrust the medical system for good reason. There are some autistic people that have had traumatic experiences in psychiatry, or who know that because of some aspects of their identity (such as gender or race), they are much more likely to be misdiagnosed or invalidated than affirmed as the autistic person they are.

Because of the pervasive ableism and ignorance regarding autism, in some cases, professional diagnosis can actually hurt more than help. Autistic people may have their fitness as parents questioned; they may be barred from employment or educational opportunities; and they may find themselves discriminated against or invalidated by societal systems that do not understand or accommodate for autistic people.

5. As someone who proudly identifies as Metis and autistic, what has been your experience of being at the intersection of two marginalized identities? What are your opinions on the availability of autism diagnosis and professional support in the Metis community?

As I touched on in my answer to the last question, Metis people are often (rightfully) mistrustful of the medical system and, in particular, psychiatry—which has long been used by the settler state to control and oppress Indigenous people. Fear of being deemed an unfit parent or having your child taken away is not an unfounded fear for many Metis people, and this ever-present fear of family separation is one that I grew up with. For this reason, some choose not to pursue diagnosis or professional support.

For those who do pursue diagnosis or professional support, such as speech therapy or occupational therapy for their children, or support for themselves, there are many barriers. The financial aspect is big, as are the logistics— there are many urban Metis families, but if you’re from a small or rural community, you would have to travel to access the resources you need.

How are you going to get time off work, arrange transportation, and find childcare (if necessary)? To my knowledge, there are no programs or initiatives specifically [tailored to] Metis communities.

6. How would you describe the current accessibility of education and work for autistic people? Is there any advice you would like to share with autistic students and workers?

To put it simply, it's not great.

Unemployment rates are very high among autistic adults. "Sheltered workshops" and similar situations that exploit disabled people by grossly underpaying for their labour or not paying at all are still common. In the case of autistic adults who are employed, it can be difficult to advocate for yourself and have your needs met, especially in workplaces without worker unions.

My advice would be that, as you consider how to best take care of yourself, keep in mind that you do not actually need to disclose that you are autistic to a potential employer. For autistic students and workers who may be reluctant to "come out" as autistic due to the anti-autistic ableism that is pervasive in our society, consider that you can ask for the accommodations you need without mentioning being autistic.

"I will be able to keep better track of things if I can take notes on my laptop," "I have difficulty understanding what someone is saying when there is background noise, can we talk somewhere quieter?", or "I do my best work when I can get up and take a short walk to stretch my legs every once in a while" are ways to advocate for yourself by explaining what you need but not outing yourself.

7. Do you support special education for autistic children and teenagers? Why or why not?

I believe in truly inclusive education because inclusive education is proven to be the best, both for autistic people who deserve to be treated equitably and for the non-autistic people who benefit from the diversity of experience that inclusion brings. By inclusion, I mean full, unqualified inclusion for all autistic children and youth.

8. Lastly, I want to acknowledge how your (neuro)wonderful YouTube series "Ask an Autistic" has helped me—and countless others, I am sure—in understanding and embracing the autistic identity. What do you hope to achieve through speaking out so courageously?

Thank you! I am always encouraged and pleased to hear that my work has been helpful to others.

When I began to produce and share my "Ask an Autistic" series, my goal was to create the kind of resource that I wish I had found when I was first beginning to research autism. By introducing autism and associated topics in an accessible and less medicalized way, I hope to be a starting point for autistic people who were beginning their journey of self discovery and to help non-autistic people come to understand their autistic loved ones better. Hearing from the autistic people who have come to a place of better understanding and accepting themselves in part through my work is always so very validating.

A huge thank you to Amythest for sharing with us!

Support Amythest’s works by visiting...

Their blog “Neurowonderful”

Their YouTube channel

“Ask an Autistic” series on YouTube

Their Twitter

Their Instagram

Their piece within the anthology Sincerely, Your Autistic Child by Autistic Women and Nonbinary Network