Showing Your Support as a Parent or Caregiver During Autism Acceptance Month
At a Glance
In this post, we'll cover some considerations for parents and caregivers around recognizing Autism Acceptance month.
Questions to consider across the month, especially if you are more present on social media.
If you are not a parent or caregiver, this post can help give some insight and discussion with your parent or caregiver or ones you are working with.
We are already almost halfway through the month of April, which means there have already been plenty of opportunities to discuss, celebrate, and think about Autism Acceptance Month.
As part of Autism Acceptance Month, we are updating some blog posts we had on a previous version of our website that hone in on different parts of the broader autism support network.
So far we have already covered self-advocates, teachers, and businesses and organizations. Today we want to focus on parents and caregivers.
It can be challenging to address parents and caregivers as a whole, as they can have varying yet perfectly valid ideas of how best to raise and/or support autistic children.
We do feel safe in assuming that if you are a parent or caregiver reading an article like this, you see yourself as one of the strongest advocates for the person or people you are supporting.
We love it when parents and caregivers are so openly supportive of the autistic people in their lives, and Autism Acceptance Month can feel like a perfect time to shout that sentiment from the rooftops.
After all, the word “acceptance” is right there in the name!
We feel it is important to emphasize how much we admire this enthusiasm and good intent, because the primary purpose of this article is to explore the ways it may be necessary to keep those feelings a little bit in check to make sure we are doing right by the autistic people in our lives.
While we would love nothing more than to focus on the celebration component of Autism Acceptance Month, the reality for autistic people can be a fair bit more complicated than it may seem.
A Common Critique from Autistics
In particular, we want to hone in on the well-founded critique from autistic self-advocates that this month - which is supposed to be for the benefit of autistic people - often lifts up allistic voices and allistic-run organizations that often play a major role in defining how the month is viewed by the broader population.
As a parent or caregiver reading an article like this one, we already know you want to do everything in your power to lift up the autistic person or people you are supporting.
Brief History of Autism Acceptance Month
In the context of Autism Acceptance Month, part of supporting an Autistic individual's personal agency is maintaining an awareness that the messaging of this month has historically been controlled by allistic-led organizations.
One of the most quintessential examples of this dynamic is that Autism Acceptance Month used to be Autism Awareness Month - a phrase reviled by many vocal autistic self-advocates in the context of some of these organizations historically treating autism as a pathology that needs to be “cured.”
Some organizations continue to draw the direct ire of autistic people for continuing to promote or fund research for ideas about autism that run counter to what autistic people want.
While it is one thing to have a debate on some topics where reasonable people may disagree, far too many of these discussions boil down to allistics deciding what degree of self-determination is appropriate for autistic people as a whole.
The worst part is, sometimes allistic people who find themselves in those discussions don’t even realize that’s what they’re doing!
Even today as it is more broadly accepted that autistic people need to have a voice during this month the systemic lack of agency can still be pervasive, as many autistic people find themselves in a social dynamic where they are expected to answer lots of questions about autism while they simultaneously do not have the power to play a significant role in determining what types of programming and policies the month will entail within a given organization.
The purpose of offering an extremely broad overview of this history is not to make anyone feel bad - rather it is to share the backdrop against which autistic people navigate this time of year.
Part of respecting the agency of the person you are supporting is acknowledging that we are all susceptible to systemic bias and checking in on ourselves.
Let's Get Practical
But what does this actually mean in a practical sense for allistic allies, particularly highly invested allies such as parents, caregivers, and family members?
It means our shows of support during Autism Acceptance Month should make clear how we feel about who should be in charge of the month’s messaging and who should have the final say in any programming or activities related to it.
It also means making sure we are listening to what autistic advocates have to say and being careful not to recontextualize their words in a way that is more palatable to us.
Yet even under this umbrella there are a myriad of options for what you personally can do to celebrate and lift up the autistic person or people in your life, and it’s perfectly reasonable to wonder how to determine the best course of action.
If you are interested in speaking up or finding a way to show support, we have created a list of questions and criteria you can consider as you work out your next steps.
Obviously, not every one of these questions will apply to every single situation, but it is great to keep them in mind, particularly in the context of celebrating a month where the focus should be on lifting up autistic people first and foremost!
Questions to Consider:
Is there a way for me to amplify the thoughts/feelings of the autistic person or people in my life?
Are they interested in sharing their opinions or taking action this month?
If they are interested, do they have any ideas or preferences on how I can help?
If they do not have specific ideas, are they interested in hearing my thoughts on how I could potentially help?
Am I accidentally negating someone's experience with the way I frame an issue?
Is my statement at risk of over-generalizing autistic experiences?
Did I accidentally endorse a political message (i.e. “It’s still good to look for a cure.”) that is primarily espoused by allistic-led organizations?
Did I accidentally endorse an organization that does not have a good reputation for its approach to autism and/or autistic people?
Am I listening to the autistic person or people in my life?
Do I ever rationalize away some of what they say because I don’t fully understand it?
What is the audience for my message and who benefits from its contents?
If my message is primarily about my experience, is it potentially better suited for an audience of other parents and/or caregivers?
If my message is primarily about a child in my care, am I sure that this is the way they want to be portrayed in front of the audience I am releasing this message to?
If I am speaking to a broader audience, am I supporting the kinds of policy or social outcomes that autistic people are advocating for?
As we all strive to support the autistic people in our lives, we hope this checklist will help us all refine our messaging and make sure we are working together with autistic people to make Autism Acceptance Month the time of celebration, advocacy, and positive change that it deserves to be!