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.
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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.
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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.
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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.
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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.
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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?
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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.
I make it my full-time job to improve my understanding of myself and others, question unchallenged perceptions of normality, and identify value in what I have to offer.
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13 Responses
Hey! I actually really relate to this article. I am afraid sometimes to post about autism, do a youtube channel about it and write to this website because my opinion is slightly controversial and very different. I am the type person who will be canceled, even my neurotypical mom and I had disagreements and even my autistic friends and I had disagreements and did not understand. So yeah, I totally understand.
Ren, I’ve been feeling this same thing for a while. The community needs more “servant leader” types – those who are always listening, open to themselves and others, and consistently lifting voices. 💜
Thanks, Ren! I like the name Aspergian, but I can also respect adopting the more inclusive title. It’s tricky to bring real issues into the open when surrounded by call-out culture, but worth it, if one’s got the capacity for the risk. The question of how to achieve actual acceptance and inclusion, while navigating our own trauma, is valuable to explore!
I was actually sad at the name change of the site, and sad that I could guess some sort of policy thing had made it so. I never really looked into it… as I just didn’t care enough, but the name the Aspergian actually made me smile, even though my official diagnosis is not aspergers. I also loved this post, and agree, the idea of mediators is lovely. 🙂 Also, Power tends to corrupt.
Ren, I appreciate this. I haven’t been a leader or activist myself because I don’t know where to start and feel that it should be an inclusive and community based thing rather than people trying to step on others or get more followers. There was more inclusion as a baseline value before the social media era, but now it seems to be run completely by people with a minority flavor of autism that is so quick to judgment. I am aware of a couple things now that might be combinable into something larger – the organization run by Jorn Bettin (who has posted here) and autistic.zone, which was developed by myself and other people in Divergent Labs. I don’t know how to move any of those things into more membership though. I think the platforms and organizing rules used in different kinds of groups affects a lot so it is so important to start with a democratic concept. Any ideas?
“it should be an inclusive and community based thing rather than people trying to step on others or get more followers” is spot-on. We don’t need any centralised organisation or committee that becomes a bottleneck or misguided instrument of control.
AutCollab.org is simply tracking a) the growing list of inclusive non-hierarchical organisation operated by neurodivergent people that provide a safe and nurturing environment for divergent thinking, creativity, exploration, and collaborative niche construction https://autcollab.org/community/neurodiventures/, b) the growing index of projects that are designed to progress the neurodiversity movement and to encourage the formation of new autistic collaborations https://autcollab.org/projects/, and c) useful knowledge resources from autistic people for optimising autistic collaboration https://autcollab.org/knowledge-repository/.
I am sure there are many more neurodiventures and projects operated by neurodivergent people in all corners of the world. Many will be pragmatically focused on concrete local needs. These organisations and projects deserve more visibility, so that we can learn from each other, and also as a counter-balance to high visibility organisations that have lost touch with large parts of the autistic community.
I can relate to this article a lot, even though I’ve started trying to become with the neurodivergent community only last year. I strongly second above all the view that we need as many people as possible to be trauma-informed.
I got into a conflict last year when co-leading an in-person ND group which in my opinion could have easily been resolved at the factual level, but it did not happen because both sides (in my opinion) stepped on each other’s trauma triggers and the communication degenerated to personal accusations (one side’s variant of a meltdown) and withdrawal without comment (the other side’s version). This drama took me totally by surprise and I needed to analyse for quite a while how such a resolvable issue could have blown up so painfully so quickly, and the only conclusion to which I’ve come is: a lot of trauma, and not enough collective awareness and skill around it to span a safety net around such situations.
Of course the situation sent me into a lengthy crash and I gave up organising any group things, but I’ve still been thinking about how this could have been a softer fall. I wonder if there are people who are more experienced and have strategies that work: perhaps both for ground rules for trauma-burdened neurodivergent groups and for mechanisms / processes of what to do when the rules don’t prevent something like this.
“Democratic process” – something like this, although “democratic” makes me think of voting and always getting out-voted as the minority in all situations 😀 but yes, some kind of suitable protective structure that ensures the information and power flow is not unidirectional (not even unintentionally – since this was the first time I led something, I realised how easy it is to seemingly ignore/exclude people just because there’s so much to pay attention to and I had no algorithm/process).
I would actually really love to discuss this kind of thing with others who have experience of something working well, or even experience of failure 😀
But ya, I really appreciate this article because … well it confirms my theory that the situation in which two traumatised ND sides accuse each other of precisely the identical things is probably trauma-based and needs trauma-informed group decision processes and trauma-informed conflict resolution processes. Where do we find those? Or do we have to make them up?
Yes, trauma is a significant part of the neurodivergent experience, and it often entails coping mechanisms that get in the way of establishing trusted relationships. Teasing apart the difference between being autistic and being traumatised as a result of being autistic in a world not designed for autistic people is far from straight-forward. The topic of trauma is one of the topics that we’re intending to cover as part of the Neurodiversity Documentary project https://autcollab.org/projects/neurodiversity-documentary-2020/. You are more than welcome to contribute, simply follow the link and get in touch via the contact form on the page.
This made me think of this recent post by Hannah Molesworth, who was driven away from autism advocacy by harassment from a prominent autistic advocate. (She doesn’t give names but it sounds like Agony Autie).
https://www.facebook.com/marvellousfutility/photos/a.258829317960919/838780339965811
I really don’t want this post to turn into a callout post (which is why I’m not naming names either). I’ll just reiterate what I said: we’re all tired and traumatized, and most of us have engaged in divisive behaviour.
I love how honest this is, I am dismayed by it though as a newly diagnosed person naive to the politics. I’d love to know who the big names and alleged leaders are? You were right to call them out. The Aspergian was a great name but who cares about the name when the content is so relevant!? Also what the heck is wrong with that name? I don’t understand. I was diagnosed this year with Aspergers, I was not diagnosed in America. Am I not politically correct? Should I be ashamed of my diagnosis within the autistic community? How much more complicated does everything need to get? Outlawing Aspergers is a waste of time and energy, choose your battles people. It sounds like the ‘leaders’ got lost in their own square, they should understand other countries still use that title. So who is not being inclusive? Ugh
I first discovered the autistic community about 9 years ago and yeah I’ve generally found that it just does not work for me to try to use online spaces to make social connections since it takes so much energy that I could be putting toward other things instead. I spend most of my time doing advocacy work in my local area and have managed to find a few local autistic people who I can connect with. I try to follow major developments in the online community though. I’ve had a similar experience with other communities, in particular the queer community which also has a lot of trauma. As others have said, this is a result of marginalization with trauma and other factors making it difficult to form inclusive communities. I guess that is part of why I spend my time doing the work that I do, because I want future generations of autistic people to be able to grow up in a less traumatizing, more accepting world.
I had to quit social media due to all the infighting between the EDS and ASD groups/leaders. I’m struggling on a good day with both… I don’t need to watch people compete for who has it worse or call out every misstep or meltdown. I tried, but it sent me into too many meltdowns (withdrawals) because I was disillusioned by finally finding my people but everyone being torn apart. A reflection of society as a whole still, I suppose. I’ve got my ASD husband and kids, we got enough on our plate… lol! I’d love to just find other ASDers who can recognize trauma and not be super ridged with expectations of each other. We will get there… it’s all still new and evolving.