Happy Autism Acceptance Day! As an autistic person, I wanted to share a few of my tips for how to approach Autism Acceptance Day. Since being diagnosed, this month is often one of my least favorite times of the year. However, together there are a few ways we can make it better, which is why I’m including the tips below.
- Stop calling it Autism “Awareness” Day. Autism Acceptance Day is preferred. Here’s an article about the difference between the two from ASAN (The Autistic Self-Advocacy Network). ASAN is my preferred place to get information and knowledge about autism because it is a non-profit run by and for autistic people.
- Give the microphone to an autistic person. One of my least favorite things about Autism Acceptance Day is the huge amount of parents out there who are not autistic themselves, sharing about their autistic children. Maybe it’s aunts, uncles, friends or other relatives, but most of the content created around Autism Acceptance Day is created by people who are not autistic. I understand it can be difficult to live with us and you may have to change the way you do things to accommodate us. You want to tell your stories and share about us so you can help raise awareness. I think it all comes from great intentions. However, it’s important to realize that as autistic children we grow up to be autistic adults. I want to hear from more autistic people during Autism Acceptance Month. We are out here and we are sharing our stories, but our own stories are usually taken from us by the people around us sharing them on our behalf. This can lead to misconceptions about who we are, what we think, or how we struggle. I’d love to see an awareness world where we made space for the stories of those who are affected by autism but also prioritize the stories from autistic people themselves.
- Don’t engage in performative allyship. What is performative allyship? Well, it’s when someone from a majority group or privilege showcases their support of a marginalized group in a way that either work against them or isn’t helpful at all. Maybe it’s done just to make that person look good. A great example of this is the changing of Facebook profiles with an autism message for a day. Don’t just put up the picture. Share about why this is important, how it affects you, how people can help raise acceptance. Share stories, and articles. Be out there. Don’t just put on that profile picture and pat yourself on the back. DO THE WORK. Take some of the labor off the autistic community to share our stories.
- Be an advocate for autism the rest of the year, not just during Autism Acceptance Day. Everything that you would do during this day needs to happen every day of the year. I live with autism every day of my life, so I have to advocate for autism everywhere I go. As with anything (race, gender, etc.) it’s important to be an ally everywhere you go and at every opportunity you get. That’s the only way to build true awareness.
- Donate to organizations that actually help people with autism. If you usually make a donation in the name of autism today or during this month take the time to research where it’s going. Autism Speaks runs a huge fundraising campaign during April. Only about 4% of their budget actually goes to help autistic people and their families. A huge amount of your donations go toward finding a cure. I’m not sure that I need to be cured. Another large portion of your donations are dedicated to developing a test to diagnose autism during early pregnancy and encourage people to not have autistic babies. I can’t stand behind an organization that thinks there should be fewer people like me in the world. Autism is a form of neurodiversity and it makes my life sometimes difficult, but unique and interesting. Instead of donating money to Autism Speaks, donate to the Autistic Self-Advocacy Network. Again, it’s a non-profit run by and for autistic people.
- Do not “Light it Up Blue” today or this month. The campaign of “lighting it up blue” comes from Autism Speaks. The blue originates from the gender stereotype that autism is something that only affects boys. I’m here to tell you, as an autistic woman, that it affects us just as much. Not only is autism a spectrum of entirely different presentations in different people, but those differences span gender as well. Do not engage in a form of allyship that keeps driving home this harmful gender stereotype. It makes it difficult for people like me to be diagnosed and have that diagnosis taken seriously by the world. When talking about autism make sure you are talking about how it affects everyone.
- We need less autism awareness and more autism acceptance. I’m going to quote an article in Psychology Today because I feel they have worded this better than I can. “Awareness is simple and fleeting; it is merely the beginning of the journey. When working therapeutically with autistic clients and their loved ones, we must start from a place of building awareness and then quickly move on to promote acceptance and understanding. The act of being aware does little to enact change in and of itself. Sometimes, an increase in awareness of autism in oneself or a loved one can even evoke negative feelings, because awareness without acceptance allows stigma, stereotypes, and negative assumptions to linger beneath the surface and negatively impact how we perceive ourselves and/or others. Until society as a whole shifts from awareness to acceptance, autistic people and their families will continue to be impacted by, and potentially internalize, negative attitudes and stigma that currently prevail in the wider conversation about autism.”
- Do not tell us the “correct” language to use when referring to ourselves or our community. I wrote a blog post a while back about Person-First and Identity-First language to explain why I use Idenity-First language when referring to myself. Whenever I find myself discussing autism there is almost always a parent of a child who is autistic who finds themselves correcting me and telling me that I’m referring to myself incorrectly. If that’s you, this blog post is for you.
Also, during this coronavirus pandemic I just wanted to share with you 5 apps that Apple has been highlighting to help families who have an autistic child at home.