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My children weren’t given the luxury of being children. They “aged out" of cute long ago. There’s no benefit of doubt extended to them. There’s very little grace. They should “know better” and “do better” long before they reach adulthood. And this is an attitude that will be forced upon them long after they hit age 18.
Armed with this knowledge, coupled with my own experiences and watching them go through their own, I have chosen to center my advocacy around specific issues and prioritized which are most important to us. In other words, what I find important, what I choose to fight for, and any preferences I might hold are based upon lived experiences, how I present myself to this world, and what this world perceives me to be.
This community often talks out of both sides of its mouth, meaning it will often give contradictory opinions and/or advice in different situations depending on who the intended audience is.
This community will:
-claim to be okay with many of its members choosing to identify themselves as, but then tell those outside of it that we all prefer something else.
-preach autonomy but not fully understand that this includes acknowledgement and respect for decisions made that do not align with their own.
-talk about being more inclusive and intersectional and yet continue to govern its advocacy through a lens that perpetuates whiteness and privilege.
There’s more, but for the purposes of this piece I will focus on the above three.
Choice, preference, priority, autonomy. All so very important to me. All permeate throughout my work. All of which influence what I do here.
When I state that I do not prioritize symbology, colors, identifiers, or carry banners designating my “side” within this community, I meant that. With my whole chest. I have no desire to break myself into camps. That is energy I do not wish to expend in this way.
My experiences and that of my children’s dictates that I have so many other things to focus on that require a lot of energy, mentally, emotionally, physically…
However, my stating this does not indicate a lack of care nor awareness for symbols, colors, identifiers, etc. It simply means that while I understand and acknowledge one’s preference for such things and wanting to inject this into their advocacy, I place it low on my list of priorities. When I state that I can’t focus on puzzle pieces, and I don’t…this doesn’t mean I don’t understand the meaning behind them. It means that fighting for proper symbology hasn’t kept my sons from being harmed by these systems, to include physically.
My priorities are different. And talks of identifiers, symbols, colors, etc. dominate conversations here. It can take over entire threads. And people will spend hours putting energy into proving their side is "right," and that’s hours that could have been put into the creation of some ideas on how to address the shortage of care workers in many states. Or reducing Medicaid waiver lists. Or providing better workplace accommodations and securing better pay for individuals with disabilities…and on
and on.
Choice is incredibly important to me because I am often placed in situations where I don’t have a choice. For many of us with multiple intersections of oppression, we are living lives governed by a series of bad and not as bad paradigms. And sometimes, all we are offered is bad.
There are many things that I will choose to do, knowing they are in opposition to what is purported to be the majority thinking in these spaces. And I do them anyway. Because my circumstances will often limit my choices. And because of those choices I had to make, my advocacy will look a lot different. I am more lax on the preferences that others have and on the choices that they themselves make. Because I know that choice isn’t just the availability of options, it is the lack of options, and it is our life’s circumstances that influence the choices we have.
My son was harmed by law enforcement. Actually, both of them have been. And I asked this community to help raise awareness for the harm that comes to Black Autistic children. I was ignored. Shunned. Told that it wasn’t race specific, that all our children are at risk. And then my concerns were under the rug. They attempted to fold my fight in with theirs and dismissed it altogether.
I once asked this community, if your child was facing down the barrel of a gun, or the threat of arrest and physical harm…for simply being who they are and carrying the negative perceptions of others, would you try to stop the officer, or would you try to correct your child?
This community will spend so much time trying to correct us, admonish us, shame us, but will do very little to address the circumstances that box us into corners.
Let me tell you what I did, after every single time my children’s lives were at risk, I attempted to change them. I attempted to make them more compliant persons so that this would not happen to them again. I reached for everything I could that might keep them safe.
I put them in every shirt that had “Autism” on it. I put them in every shirt that held a “puzzle piece,” because for those outside of this community that is more universally recognized. I wanted to protect my boys and I didn’t have many ways on how to do so. I was hoping that by someone seeing their shirt and knowing what that meant, it would induce some understanding, some grace, and would protect my children.
I almost forgot I did this because I wanted to forget that I had. That I felt so helpless that I had to announce to the world my children’s diagnosis and “brand” them so that they would be safe. I was reminded of this action by another Black parent on a thread by a good friend of mine (who is also Black and Autistic) about how many times these symbols and shirts can serve as a form of protection for us.
It should not have to be this way, and yet, for many of us, it is.
How we live our lives influences our choices. Choice will influence our preferences. And preferences will influence our priorities.
Because of how I am treated, because of how my children are treated, because of how this world will see us, influences how I show up in these advocacy streets. This influences what I choose to focus on, what I prioritize as urgent, and what I push way down the list. Y'all do the same, you just ain't really thought about the mechanics of it all.
Preference will often refer to our patterns of choosing. It describes how often we lean towards something. I don’t carry preference for identifiers here, because I do not lean any one direction for a particular one. I designate myself Autistic in mostly online spaces and situations, and I am often “has/with Autism” in real life.
This is the result of experience dictating my choices, which in turn, played a role in my preferences. I am not safe enough in this world to be as free as “Autistic” would afford me. I cannot let go of masks when I still have to code-switch. I cannot be free to stim when this skin is considered maladaptive.
I often “carry” this diagnosis, distancing myself from it as much as I can. But I am never really without Autism, even demonstrating a somewhat “muted” version of it. I hold tremendous space for those who identify person-first because I often have to do the same. I hold space for them because identity is important to me and should never be put to a vote. I hold space because choice is important to me. As previously mentioned, choice is something I often do not have a lot of. I will fight for every bit of choice I can get, and I will do the same for others.
Having said that, it is important to note that choice be set apart from choosing. There are so many instances in which we are aware of alternate selections and still, for a variety of reasons, lack the ability or rather, opportunity, to choose what is best for ourselves and our families.
Let’s attempt to put it all together. Tying choice with preference with autonomy.
I used to think of myself as having clear alternate methods of executing advocacy work. I used to feel that this was a deliberate path I chose out of many before me. However, this is not the case. I advocate the way I do because I was left with little choice to pursue another route. All other routes were governed by those with enough privilege to dismiss my pain or not even register our trauma as pain. My work is the result of my contexts and histories that led me here. I choose to prioritize issues that are most important for me and my family, as well as others like us.
And I choose to give little weight to the teams created within this community.
I choose to not let my advocacy be led by the preferences of others. I can’t afford to. And that is what many of these issues discussed within this piece boil down to: a matter of preference. Regardless of whether you feel those preferences are the result of harm or have harmful pasts, what people choose to identify with, what they choose to prioritize in their life and work, what decisions they made along the way that led to what they now prefer over others, are still preferences. Preferences born out of a pattern of choosing from choices that were provided to them and based upon their individual life’s circumstances.
Autonomy, in short, is the right to self-govern one’s self. One’s behaviors and beliefs are self-determined, even when the influences of this world are all around them, they have the right to choose what they are drawn to, what they are not, how to act, how not to act, what to believe, and what not to believe.
When you purport that a majority feels or to even be so bold as to state that ALL Autistics prefer this or that…you are imposing your desires and beliefs onto another. And one does not have to follow what you put out there. The right to make decisions for one’s self and to choose should be free of constraints (no threats, no force, no coercion). The right to make decisions about themselves that aren’t laced with the judgment and condemnation of others.
There are restrictions on autonomy that this community actively engages in. It usually shows up in the form of paternalism when involving matters of preferences for certain symbols, colors, identifiers, etc. There are arguments from many that induce the “harm principle” as a restriction to autonomy, though they would never frame it as such, instead they would state that the "words one uses to describe THEMSELVES is perpetuating harm to others," or that using a puzzle piece because they like it and prefer it, is hurting other people. However they choose to frame it, this harm principle, it is indeed a restriction of autonomy.
This community engages in paternalism most often when denying autonomy in the context of symbology, identifiers, colors, etc. And I will argue that it’s paternalism in the sense that one is acting to protect the interests of another or to act as though they know best for that person, despite being told by that person their wants, needs, and desires.
Honestly, paternalism within this community extends beyond addressing what is being talked about in this essay. This community will often tell its members and those outside of it what someone likes, prefers, will accept, etc. and it will disregard and deny those feelings of those who feel otherwise…instead opting to present a set of Autistic rules and bylaws that we are all to fall under despite having backgrounds, histories, and experiences that dictate many of us cannot be led by such groupthink.
When it comes to identity, symbols, or colors. This is something that ranks low for me. It’s not something that I feel will move the needle of tangible, meaningful progress this community deserves at all. Does this mean that I do not understand the argument behind the decision to remove the puzzle piece? No. Does this mean I do not care about the color blue and the organization its typically associated with? No. Does this mean I don’t understand the push for identity-first language? No.
I prioritize other things because addressing those particular issues have done little for me and my family. And in looking at what it has done for this community, it hasn't done much for the lot of y'all either.
These rank low in priority because I am focusing limited energy in other ways. These rank low in priority for me because addressing them ain’t ever been beneficial for me or my family in the long run. These rank low in priority for me because it presents obstacles to community and fellowship because people draw battle lines and stand on their side and shout at one another.
For progress to occur, for the dismantling of harmful systems, we need everyone and I am not going to engage in a back and forth with someone or many someones for hours over puzzle pieces or the fact that "I have Autism."
I am just not.
This is a fantastic essay on something you’ve shared on multiple times...it helped me better grasp your ideas even better. When we fail to acknowledge that not everyone’s circumstances are our own, that their lived experience will always be more significant than any conclusions I’ve drawn about it, we lose sight of how necessary these diverse experiences and perspectives are to creating real change. That the energy we bring to this work gets wasted on policing a set of rules or guidelines...you said it perfectly. I’m so glad you are doing this work Tiffany; that you bring your whole self and share it with us, that you allow us to learn from you and your family’s experience...it’s a pleasure to support your work.
The question I’m left with (always, this is my brains automatic default), is how? How do we do this? How do I invest my limited energy in ways that best advocate for all those who are autistic/have autism, including my myself and my kids? What is the best way to ensure my ND biracial kids have both a safe AND accessible education experience? How do I raise them that allows them to grow up as unfettered as possible, without the shame and stigma and harsh demand to mask, always, that I grew up with? How do I do so in a way that also opens up the pathway for those who are in less privileged existences? Where whiteness isn’t a part of their safety net? Where cisgender, heterosexual identities aren’t part of their safety net?
These are the questions I must consider, and I must admit they feel impossible. It feels easier to just teach my kids to perform in ways that make them safer. And yet. Thank you for the reminder of what’s at stake.
Well said. Thank you for sharing.