April is known as Autism Awareness month for some and Autism Acceptance month for others. This month can stir a lot of discussion, but too little of it involves #ActuallyAutistic people. Well-meaning neurotypical people often take in and share harmful or inaccurate information that comes from suspect sources. A diverse world requires a wide variety of perspectives, and often the discussions about autism are missing the input and experiences of the people living with it. So this April Find the Light has worked with Autism advocate and FZE alum Ryan Bingham to put together a list of what #ActuallyAutistic people want you to know.
Awareness or acceptance?
What does awareness look like? Is it enough to be aware of autism? Autism is an incredibly complex and wide-ranging diagnosis. No two autistic people are the same. Awareness efforts can often perpetuate harmful stereotypes and spread misinformation. Acceptance looks very different than awareness because it comes from knowing that autistic people are valid members of society exactly as they are. They aren’t burdened with living with autism, they’re navigating a society that doesn’t accept them as they are. Acceptance looks like everyone being fine with people avoiding looking them in the eyes and stimming in public. It necessitates really looking at societal expectations and evaluating their importance. In broad terms, acceptance looks like caring less about what your definition of normal is.
Should we be using person-first language?
Person-first language is a common way of phrasing disability. It puts the diagnosis second when describing a person, as in a person with autism. The idea is to show that a person is not defined by their disability. However when we asked Ryan if we should be using person-first language, he said that in general we shouldn’t use it, and if someone isn’t using it don’t correct them. Some people in the autistic community prefer person-first language, but most don’t. It’s more commonly used by educational institutions and governments. The reasoning behind many people not using person-first language is that they see it as separating the individual from their autism, treating it like an illness instead of an integral part of who they are. You wouldn’t say a person with deafness, but you would say a person with cancer. Many people prefer to be called autistic instead, however if someone prefers person-first language you should absolutely respect that. The important thing is to listen to individual people in your life.
What is stimming and why is it important?
Stimming is any repetitive action. It’s a way to get out excess energy. For many autistic people, it’s a tool to help keep them focused. Some people use fidget toys, some may perform repetitive hand motions such as flapping or squeezing, some may bounce their legs, and many stim in a variety of other ways. Many people with anxiety, ADHD, and other disorders also use stimming behaviors to calm or focus themselves.
What kinds of sensory challenges do you have and how do you want people to help?
Ryan, and many other autistic people, prefer to not be touched. He prefers pandemic rules of social distancing and no handshakes. He advises that we avoid wearing strong perfumes or colognes–they can cause sensory overload. When meeting someone don’t assume a handshake or definitely a hug. For preferred greetings, Ryan has this advice: “Handshakes are stupid. If you really have to do something, stick with an elbow bump or a wave.” If you’re inviting an autistic person (or really anyone) to have a meal with you, make sure to ask your guests for any dietary limitations and make sure you’re open to texture-specific aversions. “Chicken nuggets are always a safe bet.”
How can we help autistic people with periods of change?
For many people periods of major, or sometimes even minor changes can be a challenge. Change is inevitable, so we should help make it as smooth a transition as possible. Try to help keep some sort of routine and make sure anyone who needs it has downtime and a quiet place to go and decompress.
Should we use functioning labels such as “high-functioning autism?”
No. The research into them is dubious. It centers discussions on autism on normalcy and it doesn’t paint an accurate diagnostic picture. Autism is a mix and match. Someone who appears high functioning may suffer from major executive dysfunction or self harm. Someone who is non-speaking may still communicate well and succeed in school or work.
Is self-diagnosis valid?
Yes. When possible a person should get a diagnosis, but there are many barriers that can prevent someone from accessing the channels that could provide a diagnosis. Ryan says his diagnosis was an accident and didn’t come until he was fifteen despite signs being present from an early age. Getting a diagnosis helps get you support but it’s not always possible, especially if you’re a person of color or a woman, groups who are chronically underdiagnosed.
What social expectations should be changed to make communities more inclusive?
We should be okay with not looking people in the eye. It’s not rude to avoid eye contact or physical interaction. When companies interview candidates the interviews should be focused more around competency-problem solving as opposed to small talk to see if the manager likes you. Managers should look for if this person can do the job more than if they will fit in perfectly with the company culture. It’s also important to be flexible on dress codes as much as possible.
How can we avoid misunderstandings and remedy them when they happen?
Explain yourself. Social cues can be hard for people and signals will get crossed. Be patient when there’s a misunderstanding and let people ask questions about your intent, even if your intentions seem obvious.
Do you support Autism Speaks?
Not at all, and most autisitc people advocate against them. Not only have they engaged in misinformation about vaccines and autism, but they don’t listen to autistic people. The one autistic member on their board resigned because he felt he was being overlooked. It’s hard to meet the needs of autistics when you don’t listen to them.
Their messaging is almost always centered on children with autism and their parents, and their ideas of treatment often try to make kids seem less autistic. Closer to society’s definition of normal. They often advocate for the controversial ABA therapy. There’s a lot that falls under the umbrella of Applied Behavioral Analysis therapy. Some of it is fine, but a lot of it is bad. It mostly centers around conversion therapy- like tactics. It’s teaching you to act like something you’re not rather than solving problems and navigating a neurotypical world. While some people claim that ABA was successful for them, many came away with traumatic experiences.
Autism Speaks has also advocated for an autism cure which autstics do not want. It’s eugenics. Having a wide range of diverse people is a good thing, even if to onlookers the type of diversity looks negative. The bigger problem is that a large focus is to treat symptoms and not causes. The focus should be on what is causing harmful behaviors and how can we mitigate that. Supportive therapies should be designed to support an autistic, not making them less autistic. If wearing buttons causes sensory overload, the solution might be to wear two shirts, not ignoring the problem. Therapies and treatments should never focus on trying to fit a definition of normal. Good therapists let autistics be themselves and get stimulation in a healthy way and learn to mitigate problems caused by sensory overload.
Who should we support instead?
The Autistic Self Advocacy Network (ASAN) is the main organization that really helps the autism community.
How should the parents of autistics interact with the autistic community, and what mistakes can they make in advocating?
Parents of autistic children absolutely have a place in the autism conversation, but they shouldn’t speak over autistic voices. A parent won’t know as much about autism as the kid. Parents should always take input. As soon as the child has a voice (whatever that looks like), let them advocate for themselves as much as possible. Let them lead the conversation. Raising a neurodiverse family can be difficult, and those experiences are important. Make sure to make concessions to avoid getting frustrated. It’s okay to get frustrated, but it’s not okay to take it out on them. Listen to your child’s needs and help them interact with the world.
Where can autistic people and neurotypical people learn more about autism?
ASAN is a great resource and the #ActuallyAutistic tag on twitter is for autistic people to communicate with each other. If you have a question you can reach out using #AskingAutistics.
What else do you want neurotypicals to know about autistics or autism?
Ryan’s expert advice: “Don’t be weirdos.” It’s always good to remember to treat people how you want to be treated. Don’t infantilize autistic people. Treat them like a normal human being, because that’s what they are.
Be aware of symbols and language that you use when advocating for autistic people. A common mistake involves the famous autism puzzle piece. Not only does it have strong ties to Autism Speaks, it implies that autistic people are a problem to be solved or that they need to fit in somewhere.
Autism isn’t a malfunction, it’s a different operating system. As a society it is our responsibility to adapt to create a place for everyone in our community. Autism Acceptance means instead of changing your profile picture to light it up blue, you inform your advocacy by listening to the people you’re advocating for. This April and all year round, make sure you’re advocating effectively, and sometimes that means letting others advocate for themselves.