It’s been about a year since I started becoming active in autistic self-advocacy, and it has been an emotional roller coaster of a ride.
Being an active part of the community means regularly engaging with other advocates. It means talking on social media, on Twitter, on Tumblr, in Facebook groups, in private messages, and in person (if we feel like it). It means forming relationships with people, hearing others’ perspectives, and … taking sides.
I have said it a few times now: If we had a slogan, it would be something like, “Autistic Self-Advocacy: We’re all tired and have PTSD.”
Imagine a group of people who have spent a lifetime being convinced they were wrong about their own thoughts and feelings, being made social pariahs for “being themselves” (while also being told that in order to make friends you should just “be yourself”), and who have found out as adults that there’s an entire group of people exactly like them.
Two things happen.
The first thing is that you receive validation after so many years. This is the best part of finding community — in reality, you weren’t wrong; everyone else was wrong.
The second thing is that you start learning who “everyone else” includes and who it doesn’t.
That second thing is particularly problematic, because who “everyone else” does and doesn’t include is governed by people with influence in the community. What everyone collectively forgets, however, is that the people with influence in our community are still autistic and, again, often have a history of trauma.
This doesn’t mean they aren’t worth listening to; it means they are fallible human beings.
It also means that the past year has made it clear to me that what our movement needs is space where everyone, regardless of opinion, is welcome, in which the decisions of the community at large are represented (not just the decisions of autistic people who have leadership positions).
It’s a weird proposal to suggest, but the autistic community needs a democratic process. And nowhere is this more obvious than when it comes to autistic people in positions of influence calling for other autistic people to be ostracized (or “cancelled” or “brought to justice”).
In the past year, I have seen multiple autistic people who are considered “leaders” do this.
I have had it done to me.
And I have done it to others.
I mention that I have done it to others because I would be a hypocrite not to, and I am nothing if not ridiculously self-aware; but it should be noted that with only 300 followers on Twitter, I hardly count as having any sort of “influence” or “leadership” capacity.
It should also be noted that the people that I called out specifically were all in positions of leadership in the autistic community, and that I was very specifically criticizing how they acted in their capacity as leaders.
But not everything I said was fair.
I want to acknowledge that. I will likely never speak to these people privately again, because they have made it pretty clear that they believe I’m incapable of having a good faith argument; but if they do ever read this, I want to be clear that I understand that not everything I said was fair. I apologize for personal insults that I posted publicly. They’ve been long deleted, remembered only as regretful moments of a meltdown.
That having been said, I do want to talk about how I bore the brunt of this fallout. I know I wasn’t kicked out of the local organization I criticized; I left voluntarily. But it still felt like ostracism.
I’ve never wanted to make this story as public as writing about it in an article, but it has come to the point where dividing from the community (or choosing a side, as it were) has become such a defining moment for me in autistic activism that I simply have to.
The short version of what happened was that an autistic-led organization I had been involved with locally posted something on Twitter that I disagreed with. They were stating that they refused to share articles from this site, particularly because, at that time, it was called “The Aspergian.”
We attempted to resolve our disagreement, but were unable to find common ground.
But having a fallout with the leadership of the largest organization in my area also means that I am socially isolated from the people in that group that I might still get along with.
And the relationship with leadership is likely too broken to mend. It was only a month or two ago that a completely different member of leadership viciously had a go at me on Twitter, essentially claiming that my version of the story was a bunch of lies (even while I was posting screenshots that clearly backed up what I was saying), and that I was a bad faith manipulating liar who deserved his vitriol, and worse.
Here’s where I digress.
That whole situation sucked, but there was something interesting about it. I noticed a pattern that I keep seeing among autistic advocates over and over. In almost every situation, both sides have the exact same narrative.
Whenever I described how I felt, I was told I was “projecting” and that, no, what I was describing was actually what happened to the person on the other side.
When I said they shut the conversation down, they claimed that, no, I was the one who shut the conversation down.
When I said I felt disrespected and had a meltdown, they claimed that, no, I actually disrespected them and they had a meltdown.
So much of this conversation consisted of tweets that were the epitome of “NO, U!” that it was almost funny. And even though this person was being completely awful to me in the moment, I believe he was telling the truth.
I mean, he was wrong when he called me a manipulative liar, and he was wrong when he said I was projecting. But he was likely telling the truth about how the other side felt about my interaction with them.
I see this scenario play out over and over in autistic self-advocacy, because for some reason, everyone has gotten lost in the emotion of the moment and has completely forgotten that we’re all autistic.
Now, the person I was just referring to claimed he would have gone harder on me if I weren’t autistic, so one could argue that he didn’t forget. But in that same diatribe, he also claimed, without knowing much of anything of my life beyond the fact that I’m autistic, that I have no idea what trauma feels like.
Maybe it’s because I don’t want to believe that someone who is meant to represent other autistic people would normally tell another autistic they couldn’t have experienced trauma in their life, but I’m going to give him the benefit of the doubt here and say his emotions did, indeed, cloud his judgement.
Anyway, the light bulb moment I mean to highlight is that it’s likely that both sides are right… to a point.
The part where it becomes troubling is when power dynamics come into play, because when it comes down to it, there’s a side that has more influence, more of a network, and more connections than the other person.
I have seen Big Names in Advocacy “warning” their friends and followers about another autistic person in the community, claiming that they were an abuser when they were, in fact, in crisis mode and having a meltdown.
We need to learn the difference between someone who is acting inappropriately, but is actually open to change and doing better, and someone who is acting inappropriately, but doesn’t want to change.
The people that fall into the latter category are rare, but it’s more troublesome when they are in a position of authority. Because there is literally nothing we can do to force them to change beyond trying to hold them accountable publicly… which, of course, looks like an attack.
And ‘round and ‘round and ‘round we go.
My thoughts about this came up when I was reminded of the divide in the community when news about Mel Baggs’ death came about. The health care system in America failed to support one of our own, and this should have been a time of collective mourning in the community.
Instead, my timeline was filled with retweets that were “unavailable” because they were from autistic advocates who had blocked me in previous disputes (or whom I had blocked).
I felt more disconnected from “community” than ever.
Making matters worse, when NeuroClastic published a tribute article which honoured Baggs’ contributions to autistic self-advocacy, the author was later criticized for doing so as if they had no right.
Less than a year ago, a Big Name Advocate chided me for refusing to listen to “autistic leaders” when I disagreed with their opinion about this website’s former name, and they grumbled about how elders deserved more respect.
When this site, under a name change that was rushed because of forceful pressure because of those same advocates, publishes an article with nothing but respect for a community “elder,” the pushback can be boiled down to “how dare we” even talk about hir.
It’s a lose-lose situation. These critics don’t want harmony. They want us to go away entirely.
Does this sound like the actions of someone we should look to for building community?
One thing is certain.
I have had enough of the elitism from self-advocates with influence.
It’s become very clear that there is a big difference between “thought leaders” and “community leaders.”
Many of the people who were once thought leaders in the community are no longer in touch with the wider community. They keep mostly to their own circles, and much of their work is more action-oriented.
This work is still incredibly valuable, which is why I still point to many organizations when I have personal disagreements with the people who run them (as opposed to privately contacting everyone who works with them and slandering them, which is something I’ve seen evidence of others doing when it comes to NeuroClastic).
But these people also need to stop fooling themselves into believing that they are community leaders by virtue of being thought leaders when they are clearly failing to create “community.”
What our community needs is more people who are trauma-informed, who are willing to be third parties, who are willing to make harmony amongst a huge group of traumatized human beings who all just want to be treated better in greater society.
I’m not saying I should be that person. In fact, I explicitly don’t want to be that person. But I am saying that we can’t progress forward with these divides in the community, where a portion of us will forever believe that the other portion is acting in bad faith.
We don’t need any more people telling us what to do and what to say.
We need people who uplift and unite us.
Our movement needs more mediators, not more leaders.
I am no longer surrendering my opinion to “leaders” who are so out of touch and unwilling to examine their own flaws that they can’t even recognize that their go-to solution for “problem members” in the community is to ostracize those people until their own voices are the only ones that can be heard.
* July 7, 2020: This article was edited from its original version to correct a minor editorial oversight.
- Sensory Processing is Only Half the Story: Movement Differences in Autistic People - March 14, 2021
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- Our Movement Needs Mediators, Not Leaders - April 29, 2020