Our current autistic advocacy movement has been around since the 1980s. A foundational piece of autistic acceptance is “Don’t Mourn for Us” by Jim Sinclair, who helped pioneer autism as a different type of brain rather than a defective one. Since then, autistic advocates, both online and offline, have been pushing for more acceptance and inclusion in social, economic, and political spheres.
Yet, there are some growing areas of autistic advocacy that are critical to spotlight if we are to uphold our values of acceptance and inclusion. I want to highlight three communities within the larger autistic community that often have their needs passed over: BIPOC autistics, non-speaking autistics, and autistics who also have another intellectual or developmental disability.
BIPOC
Since autism was discovered, research and advocacy has primarily been focused on white families. Thinking of autism through this perspective has prevented professionals and advocates from understanding the diversity of the autistic experience.
For example, professionals are more likely to diagnose children of color with behavior conditions, such as Oppositional Defiant Disorder, as opposed to autism or ADHD. Racial biases have prevented autistics of color from receiving a diagnosis in a timely manner and delays access to supports that they deserve to have.
For advocates, I know that you have a lot of passion and want things to be the best they can be for every autistic person. However, white autistics like me, sometimes need to take a step back and let advocates of color take the lead.
Let me try to explain it this way. We often feel frustrated when neurotypicals, who are unfamiliar with the autistic community, may give unsolicited advice that does not make our lived experience better. What would help is if we were given the time to sort things out and determine what we need as an autistic community.
Now, let’s look at this again. With autistics of color and their families, we do not have the lived understanding of what it means to be autistic and a person of color. We are outsiders when it comes to these communities. Just like we want those outside the autistic community commentating on our lived experience, we should be careful to also not speak to experiences we do not have.
What white autistics can do is learn from and amplify the advocacy of autistics of color. A great way to do that would be to listen to Intersections on the Spectrum. As the tagline goes, “We aim to introduce you to the people and stories you didn’t know about, but needed to hear.”
If you are BIPOC, we have a FREE group for you! Learn more about our BIPOC group here.
Non-Speakers
Throughout my time learning from non-speakers, I have heard two themes come up again and again. One is that they want people to believe in their capabilities. I want to share a quote from one of our Autism Stories podcast episodes where we had on Sofi, a non-speaking advocate and songwriter, phrased her experiences in school this way:
“Well, the first thing would be is to treat students with respect- read age-appropriate material, listen to their parents if they are non-speakers, think outside of the box. If a student isn’t responding to your teaching method, try a different method, instead of giving up on them as unteachable.”
While I personally feel like the lived-experiences of non-speakers are the most important voices in this conversation, there has been some research done that affirms their testimonies. A study that came out in March found that most autistics who are non-speaking develop literacy, even if they have not had formal teaching. This shows that non-speakers are perceiving the world around them and it would help everyone to remember the phrase, “Non-speaking doesn’t mean non-thinking.”
The other important practice to follow when you get to interact with someone who is non-speaking is to be patient. As you may have guessed, spelling does take longer than people who use speech and can blurt out an answer. When conversing with someone who uses AAC, remind yourself to pause and wait for the answer.
I have to remind myself to pause because sometimes I get so go, go, go- that I forget that stopping and being present with people is the most important thing we can do in our over-saturated world. I want to make sure that I slow down to be able to hear what people are communicating with me, especially if they have a different mode of communication. I hope that those of you who use mouth words like me will pause and listen when non-speakers are communicating with us.
Autism and Intellectual and developmental Disabilities (IDDD)
One of the biggest critiques of the neurodiversity movement is that it is run by people who communicate verbally, have average to above-average intelligence, and that are (usually) able to perform activities of daily living (such as getting dressed, brushing teeth, showering, etc.). However, many advocates want to learn how to include all autistic people in the fold of neurodiversity, including people with intellectual and developmental disabilities.
I think we just don’t always know how. Let’s consider some ways we can start to make this happen!
One way we can do this is by supporting legislation that can benefit autistics with varying support needs. One topic I brought up before is community housing efforts, where people with intellectual and developmental disabilities (IDDD) can live in their own space and have access to support staff that come by to help the residents with what they need.
Another area of need is for better healthcare for people with IDDD. A recent legislation that was passed is called Operation House Call- where medical students get to visit people with IDDD and their families. Students will visit a volunteer family’s home where they gain insight into how people with IDDDs are supported in their everyday lives. Keeping up with legislation and advocacy efforts can help people in our community receive resources that lead to a higher quality of life.
Because policy can be hard to understand, there is an increase in plain language resources to help explain the legislation in a way that may be accessible to people with IDDD. Even if someone has difficulty communicating, they may be able to absorb more information than we know. If someone has difficulty understanding the written resources, then they may be explained verbally to the person instead. Here are some examples of plain language resources about disability laws.
Beyond this, there are some autistic adults who work with the autistic and IDDD community. There are careers out there that are open to incorporating neurodiversity-affirming practices. While I would love to go into them here, they deserve their own blog
(coming soon)!
Conclusion: the curb cut effect
In the 1990s after the Americans with Disabilities Act was passed, a concept called curb cuts was brought to street corners across America. The reason behind curb cuts is so that people who are wheelchair users can cross the street. The benefits extended beyond the disability community, as people who use strollers or bicycles could also cross the street with less difficulty. By centering a need of a marginalized community, life improved for many.
When we are committed to centering the needs of those who are multiply impacted by their identities, then many others in our society may benefit as well.
If you are autistic and want to find ways to connect with your community or you're looking for ways to get involved in advocacy, our life coaches can help you! You can book a free call today.