This article is the first in a series about safe and inclusive autistic advocacy. Much of the content of this series is a collective wisdom gained after interfacing with the autistic community– leaders and those who mainly silently read without interacting and everyone in between.
Lots of think-tank discussions, private conversations, and strategizing with veteran activists and up-and-coming activists have informed this series, taking special consideration to weigh perspectives from people who are underrepresented in the advocacy scene.
We went into these discussions with the intention of helping to build a safer community considering the unique circumstances surrounding our population.
The Reality of Advocacy
Being an advocate in any marginalized community comes with a lot of risk and requires a lot of nuance. There will be more failures than wins– a lot— and it’s a lifestyle that involves being immersed in a lot of painful truths.
By default, any marginalized group is likely to have high rates of trauma, be vulnerable to abuse, have a lot of poverty due to employee discrimination and lack of supports, and a host of other social burdens that the majority either don’t share or experience minimally.
Disability advocacy, and especially autistic advocacy, is an especially delicate position. For starters, within the autistic community are all other intersections of marginalized people.
Being Autistic + Otherwise Marginalized
An autistic person is rarely “just autistic” without other aspects of marginalized identity. For example, someone may be multi-ethnic, deaf, have PTSD, be adopted/have a history of childhood abuse/have been in the “system,” have chronic illness, and be transgender/gender nonbinary in addition to being autistic.
In fact, most of those intersections of marginalized identity are more frequent in the autistic community. We ran an informal poll of the autistic community, and more than 60% identified as being on the LGBTQ+ spectrum. Some studies have demonstrated, conservatively, that more than half of autistic people have PTSD before they reach adulthood.
So, inherently, our community is one with a lot of trauma, a lot of individuals who (for good reason) have difficulty knowing who to trust, and a lot of emotional scars.
Being Autistic: An Outlier Majority
Within the autistic community, there is more diversity of thought than in any other community– ever. Not only diversity of thought, but there is diversity in how we make thoughts happen. Our brains are not only wired differently from the majority, but from each other.
So any stereotype of autistic people is true and false at the same time. Some of us are more concrete and inflexible than an anvil. Some of us are “chaotic good,” completely intolerant of routines and stability. Some are profoundly confrontational, some are so terrified of even seeing a conflict that it causes them distress.
Some are so blunt and factual and direct that they do not ever use or intuit any innuendo or hints, and some are acrobatic linguists and masters of nuance. Some have an incredible tolerance for pain, and some feel the slightest touch (metaphorical or literal) with as much intensity as electrocution.
Of course, these characteristics all exist in other demographics, but not with the intensity and scope as they do in the autistic community. I put this graphic representation together to kind of illustrate only one dualism of many when it comes to personality. This is not an actual representation of any specific scale or study, but just a visual representation of how one might look when evaluating non-autistics and autistics for a certain trait.
A bell curve maps the majority in a defined criterion, and there are typically a few outliers, with fewer the farther you get from the center. So, let’s say that the above graphic represents 200 people, and the 7 blue + symbols represent 26ish nonautistic people who score in a range. The 12 red * symbols represent the 12 autistic individuals who might be in a random group of 200 people.
An autistic person can be situated firmly in the middle of a trait with the majority, but we are more often the outliers than the norm.
Again, this is not an actual scientific model and is just for illustrative purposes.
Having such variety in all of these traits (and many more not mentioned) in the autistic community means that autistic advocacy requires a lot of understanding and tolerance of these differences and trying to balance your own advocacy when autistics have their own strength and weakness profiles to consider and mitigate as well.
Just like the vast diversity in personality traits, there is similar distribution across ability/disability spectrums. There are many in our community who have moderate-to-severe disability with visual or auditory processing. There are more blind and deaf people in our community, too, than in the general population.
This means that everything autistic people put into the community needs to be created with those needs all considered to make their materials accessible. Any video personality in the autistic community is going to need to have captions for their videos and/or a transcript. A sign language interpreter would be ideal, but is something that is often outside of our range of options as we are typically very low on resources.
All images and graphics are going to have to be captioned or have detailed image descriptions embedded in the alt text of the image so that screen readers can read aloud the contents of the image.
Lots of people with no comprehension issues have visual processing issues that make reading large walls of text difficult, so paragraphs need to be short, fonts need to be large, and format matters.
Others have comprehension issues or intellectual disability and need information to be distilled in plain language and simple, easy-to-digest, well-organized points.
All marginalized groups have their own internal activist groups with their own language that tends to be separate from the mainstream. But, the autistic community has all other marginalized identities among its ranks.
So, for people who often have pronounced disability with social communication or verbal communication, navigating all of these intersections gracefully can be difficult.
This is compounded by the fact that autistic people are often socially isolated and do not learn the norms of interaction the way most people do– which is in context, by interacting socially within these groups.
Even though there are high stakes, and there are a lot of things to consider when it comes to the world of autistic advocacy, there are safe and healthy ways to engage, and together, we can come up with a communally-agreed upon guide of best practices that empowers newcomers, that reverences the needs of its most vulnerable members, that prioritizes under-representative voices, and that makes space for people to have different perspectives, opinions, and approaches.
The next few articles in this series will provide very practical and easy-to-follow tips for how to be a safe advocate for your audience and the community you represent, how to set healthy boundaries, how to avoid accidental offense, harm reduction, preserving your creativity, how to deal with fair criticism, how to deal with trolls, how to be inclusive without speaking over people who are multiply-marginalized, how to support other advocates in their journey, and how to navigate conflicts.
These tips will be a summary of the wisdom and guidance collected from the experiences and insights from the community, and we will ask for input from readers about how to improve those tips and expand on them. We hope that other advocates will join us in making this guide a reality, and by the end we will have a finished product that represents the Greater Good for #AllAutistics.
This approach, we hope, will help us to come up with the most informed, ethical, and representative practices for the community to help provide guidance for all the changemakers out there seeking to make a better and safer world for the next generation of autistics.
- The Identity Theory of Autism: How Autistic Identity Is Experienced Differently - October 17, 2021
- Grocery Store Aggressive Meltdowns and How to Deal with Them - September 20, 2021
- An interview with Soma Mukhopadhyay, pioneer of rapid prompting method (RPM) - August 17, 2021