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Self-Advocacy During Autism Acceptance Month

Autistic adult using an AAC device, neurodiversity infinity symbol next to him

At a Glance

In this post, we'll go over some boundaries and goals that Autistic self-advocates may want to have around Autism Acceptance Month.

Autism Acceptance Month can bring a lot with it, we're here to support you in whatever you want to do this month!

If you are not an Autistic self-advocate, this post can help give some insight and discussion with an Autistic person you may be supporting or know.

One thing that we have come to learn from autistic self-advocates is that many have mixed feelings about Autism Acceptance month, from its “awareness” based origins that often pathologized autism to allistic organizations taking up most of the available airspace. 


Many more have mixed feelings about the role they are often asked to - and sometimes feel they have to - play in the name of education and outreach.


Despite the hard work of self-advocates shifting the rhetoric of this month from “awareness” to “acceptance,” many are still forced to contend with the dynamic of feeling compelled to act as an authority or sounding board while lacking the power to enact real change. 


The effects of this dynamic can vary from person to person - some might find themselves rehashing arguments they thought were settled last year and the year before while others might find themselves pushing back against problematic organizations that claim to be helping.


While we don’t want to diminish the positives of Autism Acceptance Month, it can understandably feel like the same games that play out the rest of the year in front of an audience that doesn’t really understand the rules or how long self-advocates have been forced to play. 


A common resulting theme of Autism Acceptance Month is that many autistic people are forced out of their comfort zone for the duration when they are the ones who are supposed to be benefiting in the first place!


That doesn’t sound like a great deal to us, and while we can’t change the circumstances you may find yourself in, we hope we can offer some strategies for navigating those environments while centering your own needs.


Because Autism Acceptance Month should be for the benefit of autistic people, and because sometimes Randy from accounting just needs to cool it with the questions. 


If nothing else, we hope we can assure you that you’re not wrong for wanting to set boundaries, even if those boundaries might offend some people.

What do you want to say? What expectations are being placed on you?

One mixed blessing of Autism Acceptance Month is that more people are paying attention during this time who normally might not give the issues that autistic people face a second thought. 


Even self-advocates who are accustomed to speaking up for themselves in their personal lives might find it intimidating to speak in that context. After all, those who do choose to speak may find themselves balancing their understanding of their own lives versus the broader needs of the autism community versus the social context of the increased scrutiny of the moment versus the understanding that the audience has about issues related to autism in general.


To that end, there can be pressure to speak to larger political issues or to avoid saying something that outside observers might misinterpret. 


There may also be an underlying necessity to educate people about certain issues that you may think they should already be aware of, but that also cannot be avoided if you wish to get to the points that matter most to you.


And even after navigating all those factors, there’s no guarantee that your words will be taken more seriously than an allistic person using the same spotlight without applying nearly the same amount of forethought.


It’s understandable to feel that pressure because to some extent the final outcome is not in your control. No matter how perfectly you phrase your statements, there’s always going to be a chance that your words will be misinterpreted (willfully or not), glossed over, or forgotten. Ultimately that is a reflection of the allistic audience and not you.


While the reality of this possibility is not exactly heartening news, there is one silver lining: knowing that no amount of perfect behavior will guarantee that neurotypical audiences respond appropriately, you are well within your rights to focus on saying the things you want and making sure your own narratives are on the record.


For some self-advocates, this might mean speaking truth to power when it comes to some of the well-funded advocacy groups that get increased attention during this month. For others, it could mean refusing to play into the same old discussions and instead focusing on an issue of great personal importance.


You can even spend your time with a critical eye on Autism Awareness/Acceptance Month itself, as autistic activist Chris Bonnello with Autistic Not Weird did in 2020.


By all moral reasoning autistic people should not only be included but be in charge of the messaging that goes into this month. By exercising your voice as an autistic self-advocate you are already contributing to that better reality. 


By choosing to prioritize your own mental health and energy over participating in a conversation you don’t think will be helpful, you are looking out for yourself during a time that is meant to be for your benefit. 


Your choices for yourself and the messages you wish to share are what deserve to be prioritized in your space. It is allistic allies and potential allies who need to do a better job listening and amplifying.

Speaking Up the Way YOU Want to

While you have every right to talk about your life experiences, you should never feel obligated to do so because of the expectations of others.


Explanations can be a wonderful and helpful way to call in allistic people who genuinely want to learn, and it is great when autistic self-advocates who want to spend time on those explanations have the space to do so. 


But the reality of the broader discourse is that explanations require labor, and not everyone who “just wants an explanation” is doing so in good faith. If you want to navigate those challenges that is awesome and we hope you feel that the results you are getting are worth the effort you are putting in. 


That being said, it’s also important to remember that you are not the villain if you disengage, choose to move on, or push back. You should not have to fight every potential battle that comes your way, nor should you be required to show infinite patience for an allistic person who might hypothetically have a better understanding of autistic people with the “right” choice of words.


You are not obligated to fit into their narrative. One of the most frustrating parts of allistics controlling the narrative around autism is that it can even affect testimony from self-advocates who are forced to respond to that predominant way of allistic thinking. If you are tired of rehashing the same arguments then you shouldn’t feel like you have to continue the cycle! 


Instead of engaging in the same debate over whether puzzle pieces are really that bad, you can say you want to move onto something more meaningful and get to talking about what’s on your mind.

Asking + Sharing Concerns But Firmly

If your organization, school, or company are plowing through programming for Autism Acceptance Month without even soliciting input from you and/or other autistic people in that space, you are well within your rights to try to get more involved in the process if that is what you want.


That is not to say that this will necessarily be an easy thing to do, especially in a space where the people in charge of programming have already demonstrated that they are discounting your experience. 


It is always worth weighing your personal well-being and job security when considering how strongly you want to push for your own involvement in the process.


Claiming your space in a context where people were not expecting you to do so can sometimes be tricky, but it usually starts with claiming your intentions and demonstrating confidence that your request will be taken seriously. “I was thinking this lineup of speakers could use more autistic voices, and since I work here I’d be happy to join in. Perhaps this Tuesday we could discuss what that would look like logistically.” 


While you cannot control the response of the people in charge, you can absolutely make your concerns known and give them the opportunity to show that they take the concept of lifting up autistic people seriously.

Tuning Out

One important point worth reiterating is that you are not obligated to engage in advocacy this month just because you are autistic.


As much as we have stressed the importance of autistic people claiming the intellectual space of Autism Awareness Month, that point is meant to be in recognition of the reality that allistics often take up that space whether or not there are autistic people who want it. 


Autistic people should have that space available to them if they wish to be a part of it, but no individual autistic person should ever feel like they are required to send a specific message or even participate at all.


One unfortunate reality of being part of a marginalized group is many individuals who are part of that group find themselves thrust into the role of an activist just because they notice and point out the ways that systemic marginalization affects them. 


While some people may enjoy advocacy and others feel called to it, not every member of a marginalized group wants to or should have to perform advocacy in order to live safe and dignified lives.


In that spirit, just because someone in your life might see you as a “spokesperson” for autistics does not mean you have to indulge their every question or whim. It’s perfectly fine to say “I’d rather not have this discussion right now (or ever, if that is your preference).” 


The bottom line is that you are not responsible for the failures of allistic-led organizations.


Of course, it’s not always about allistic expectations. If you checked out the wonderful Chris Bonello / Autistic Not Weird post we linked earlier, you may rightfully be thinking that there is a lot of work to be done before Autism Acceptance Month becomes an event we can all get behind without reservation. 


You may feel energized to do some of that work. You may even feel guilty about not being able to do as much as you’d like.


While it’s true that advocates will need all the help they can get, it is also not your responsibility to go beyond your personal means, ability, or desire to be the person who provides it. 


By all means, you should absolutely help as much as you feel you are able to, but you should also make sure you are taking care of yourself, whether that means taking a break or deciding you just need distance from that space.

Your month, your choice.

For all its shortcomings, Autism Acceptance Month is at least in theory meant to be for the benefit of autistic people.


Allistic people in this space should feel a sense of obligation to find ways to both respectfully celebrate this month, promote autistic voices, and improve material conditions for autistic people in the spaces in which they operate. 


That is because for too long it was allistic people who dictated what this month would mean. Autistic people on the other hand deserve the opportunity to decide what this month means for them as individuals and collectively as a community. 


Now that things are slowly starting to change for the better, we hope that you feel more confident in making the choices that are right for you and not just meeting the expectations of others.

Conclusion

If you wish to share your thoughts on ways you think we should be honoring Autism Acceptance Month we would love to hear from you. 


Just drop us a line at hello@autismgrownup.com. If you’re looking for resources to share with some of the allistic people in your life who might have shown an investment in Autism Acceptance Month, keep an eye on our blog, as we will also be covering ways that parents, teachers/professionals, and businesses/organizations can take a more healthy approach to this time of year.

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