April is “autism awareness month”—but unfortunately a lot of what I have seen take place overall, is not creating an awareness for what’s most important. I also prefer the term “autism acceptance”, but I think there’s power when we merge the two together. Here’s what I mean: Acceptance of autistic voices, begins with and hinges on our own self awareness. When we are not aware of our potential ableism, we cannot fully be accepting. I say that as someone who is still learning what that means. As a parent of an autistic child I still have a lot of work to do, but I’m passionate and eager to learn more. I’m not claiming to be an expert, just taking a moment to share some things that I have learned already. So here are four things that I think you should be doing if you consider yourself an ally to autistics.
1. Read a book written by an autistic author
As much as I don’t think there’s anything wrong with reading books written by neurotypical doctors or other types of professionals, I also think that you can only gain so much insight from people who don’t actually live with autism in their everyday life. Personally I have learned more about autism from my autistic son than I have from the books, articles, blogs, and posts I’ve read by neurotypical autism professionals. I just started reading “The Reason I Jump” by Naoki Higashida and I love it so far. Please pass on any other recommendations!
2. Follow autistics and autistic led groups on social media
This is a big one for me. I love social media. So as soon as my son was diagnosed, I immediately started searching for online communities that I could be a part of. I found many, but of course what I really mean is parent support groups filled with moms that want you to feel bad for them. That last sentence may sound harsh but hear me out. I am full aware of the challenges that come with having an autistic child, and I think it’s important to have that support as a parent. But when all we do is talk about the challenges, we miss the opportunity to fully understand and accept our childs diognosis. Let me put it this way: In order to fully accept my son, I need to learn how to be a part of HIS world. So often we try and teach autistics how to fit into our world, and then we pat ourselves on that back and consider that “acceptance”. Like as if we are saying “sure, you can take up space here.” Autistics don’t want to just be accepted into OUR world, they want us to accept and be a part of theirs. So how on earth are we going to do that if we are only participating in things led by and filled with neurotypical adults who have no idea what it’s actually like to be autistic? And if you are a mom especially, I know that following all those mommy bloggers and social media influencers feels great and can be very encouraging, but I’m going to challenge you to seek out some autistic voices as well.
Here are some of the groups and people that I have enjoyed following on social media!
3. Support organizations that benefit the autistic community
Everything I just said also applies to the organizations that we support. For example: Autism Speaks has only 1 autistic person out of a total of 28 individuals on it’s Board of Directors. How can an organization run mostly by non autistics possibly benefit their community in appropriately impactful ways? It just doesn’t make sense. Also, very little of the money donated to Autism Speaks goes toward helping autistic people and families. 1 % of their budget goes towards “Family Service” and the majority of it goes to fundraising, research, and awareness/lobbying. Which basically just means that this organization exists to support itself and other organizations that are also not benefiting autistics directly. I am not suggesting that if a friend or family member invites you to participate in an Autism Speaks event, that you say no. I am suggesting that if you are wanting to actively and financially get behind an organization that is helping autistics, that you do your research beforehand. Unfortunately in the beginning I did not, but I definitely learned my lesson by actively listening to voices outside my “mommy groups”. I attended an Autism Speaks event one time to support a little boy that I was babysitting, and I don’t regret it at all! I know that my presence there meant a lot to the family, and going didn’t harm anyone. So if someone you love is asking you to attend an event like that, I say you go! Just kindly inform them that financially you have chosen to support other organizations that are benfitting the actual autistic community, but that you would love to show up and walk with them as support.
Here are some organizations that you can look into if you are interested in being an ally to this community: (If you know of others, please let me know!)
Autistic Self Advocacy Network (ASAN)— autisticadvocacy.org
Autistic Women & Nonbinary Network (AWN)— awnnetwork.org
Self Advocates Becoming Empowered— sabeusa.org
4. Stop referring to yourself as an “autism mom”
I know this might be a tough one to hear for all you moms, but I really feel as though it’s important to address. First and foremost let me just mention the fact that in the beginning, I too embraced the trend of this clicky self focused label. Therefore I am coming at it as someone who can understand the temptation in wanting to elevate our “mom experience”. Wearing a t-shirt or sharing the hashtag that says “autism mom” feels empowering, but there is actually very little power behind it. Here’s why: You aren’t claiming to be anything that you weren’t already before. You are literally claiming to just be a mom that now knows her child is autistic.
Also—this isn’t a dance competition or a soccer game. Calling yourself an “autism mom” is putting your child’s autism at the level of children playing soccer or doing dance. This is offensive to the autistic community. When you are autistic it effects your entire life 24/7. It is not a sport that you can just play sometimes and walk away from whenever you want. Being a dance mom or a soccer mom, is a “spectator sport”. As a parent of an autistic I hope that you view your child’s autism as more than that.
I know that it’s just words and hashtags, but I truly believe that claiming to be an “autism mom” is subconsciously preventing you from acknowledging how your child’s autism should have a greater effect on who YOU are as a person. Claiming to still be just a mom but with YOUR CHILDS identity or diagnosis before it, doesn’t make you a hero. If you want to be something heroic, then it’s time to be an advocate. I hear so many moms say “well my only job is to advocate for my child” and I disagree. Your job is to continue finding ways to create a better world for your child, and part of doing that is fighting for change and acceptance within the entire community.
There are 1 million posts on instagram with the hashtag “autism mom”. You know what that tells me? That we have a lot of work to do.
If all we have is a bunch of moms walking around in their “autism mom” t-shirts keeping to themselves, then we will not see change. Because simply having a child with autism does not automatically make you an advocate. So when I hear or see you calling yourself an autism mom, what I am hearing is that you are literally just a mom who has an autistic child. Autistics need advocates. Maybe you ARE someone who is educating yourself, listening to autistic voices (your child’s included of course), supporting organizations that are making change, and reading books by autistics. If that is you, then I think you should stop calling yourself an “autism mom”. You are more than that. Call yourself an autism advocate. That’s what all four of the things I mentioned are actually all about…
Like I said in the beginning, I am still learning. These are four things that I am continuously trying to be better at. I shared them not because I have mastered them…
but because I am trying to be more than just an autism mom.