Autistic Lives Matter, a posse

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Hello,

I posted a little in the past year and lingered since then, reading and hearing others' perspectives. I have Asperger's but wasn't diagnosed until 32 long after many TOM failures and difficulties in my own life, including lots of work conflicts and getting divorced. As a result of these pre-diagnosis problems, people have launched a public campaign against me as "emotionally abusive." I can see their point of view and I've learned from these failures and changed my behaviors as a result. I haven't had problems with other people in my life in the seven years since diagnosis and CBT, the campaign against me continues and continues to affect my personal and professional life. Friends tell me that while they've never had a negative experience as my friend, they are shamed for remaining in my life. I get routinely publicly bullied by people "taking a stand" on my relationship that ended twelve years ago. I have to explain the situation several times per week to someone that I have a working relationship with. It's exhausting and heartbreaking and shows a complete lack of intersectional politics in the public's understanding of autism. But I imagine that's something that everyone reading this can relate to.

The experience of being bullied like this really triggered my childhood bullying experience. And it made me realize how many people have had a similar experience before and since. It made me realize and yearn for a social movement for the rights and perspectives of the autistic. It's exhausting to do this alone but imagine if you had a supportive posse there to support you, understand you, and make you feel loved.

I imagine a way to summon people who live with autism to support each other when someone is being bullied online, to explain perspectives to people who just don't understand but would be sympathetic if they did, and most importantly to support each other.

I found the thread about Social Justice illuminating and seeing the different perspectives. I think it's vital for the movement to be intersectional to to embrace the struggles that others face and so as to not be easily discounted by critics. Several people have mentioned how much further along the struggle for women's rights is than those of autistic rights and it made me realize that this is within our realm and our hands. It's not about waiting for society to suddenly understand. It's about us creating that movement and shaping public opinion to see what we are going through as a grassroots, ground-up movement.

I was recently featured on Bulletproof Radio where the CEO comes out as autistic and it made me realize that my perspective is largely shaped by the social justice punk rock struggles that I've spent most of my life embroiled in. I learned recently that I am statistically most likely to die by suicide because of my autism and that's not acceptable to me because it's a product of how society treats me rather than a decision that I make in a vacuum. That is exactly the kind of thing that we need to change, together, as a social movement. We need a posse.

My opinions only:

While the idea seems vaguely like an interesting one (that's a complement), the devil is in the details. Over the last decade I've seen dozens of SJW-style groups based on the goal of educating the public about a specific subgroup of humanity & sticking up for that subgroup. They tend to start up, make a big splash...and then either self destruct or simply fade away rather quickly.

A few observations:

If the person founding the group is well liked, the group thrives - at least until the founder moves on in their life.

If the founder is not well liked & respected, the group is far better served by being owned and run by a small committee. Transparency is incredibly important, as is a clearly stated set of bylaws at the onset that cover things such as who is included, reasons for dismissal of members or leaders, behaviors that will not be tolerated, etc..

For something like this, I'd suggest examining a few groups that don't make much of a splash but do pretty much thankless good work anyway such as the trans suicide hotline. Also, a phone app is almost a necessity to knit the entire network together, along with a matching web application. Also, people will need to be willing to get memberships for sites where someone is being attacked - this may result in privacy impacts.

Also...will the autistic be deemed unequivocally correct? Seeing the wide variation in social views here on WP, I can see such a venture being torn apart internally by fights over whether someone *should* be protected for what they did or said. And if bylaws aren't very carefully crafted I can see a Sad Puppy style takeover being nearly inevitable.

IMO, i wouldn't want the name to have any association with BLM.

That name has a lot of baggage, for better or worse depending on who you ask. Definitively wouldn't tie the group to that name.

Thanks for the responses. I appreciate the thoughtfulness.

Of course I think there is a need for it to be attention grabbing. We have enough monied organizations quietly doing nothing of interest for the progress of the public's understanding of what we live with every day.

I think about the many cases where Aspies are driven to suicide or are harmed because of their misunderstood loneliness. I don't think it is actually helpful to defend the actions of someone with Asperger's. They can be just as harmful as anyone else. I think explaining the point of view, struggles, and experiences of people with autism or Asperger's can inform people that are honestly more ignorant (if not curious) than antagonistic.

I'd love to hear more about these SJW-style groups that focused on autism or Asperger's rights or awareness. The Trans Suicide Hotline is a good lead.

For a little more background, I founded a publishing company that I am still involved in its 21st year that has a staff of eleven. I co-founded a national conference that still exists sixteen years later. So I understand what's involved in creating something lasting.

As we all know, Aspies aren't always equipped to get along well with other people but often get along quite well with each other. I've always got along best with Aspies and people that are a bit unhinged or at least see the world differently than most, even many years before I was diagnosed and could start to understand why.

As far as logistics, it seems that most sites now use Google, Facebook, or Disqus for identity verification logins to comment.

I'd really love to hear from more people about ideas and experiences that they've had that attracted or repelled them from certain groups or activities.

Joebiel,

When you refer to "posse", what exactly are you referring to? Are you thinking of an "in-group" of those who are not NT, or something along the lines of an outreach and lobbying organization?

Yes, I envision essentially an opt-in organization of passionate volunteers who can do outreach and lobbying. Years ago phone trees created a similar result of each person calling down the list to inform people of things of political or social interest. I think that public perception of neurodiversity is painfully lacking and that rather than waiting for someone else to fix that, it's up to us.

For an example of what I'd like to be doing, check out the comments here: https://www.youtube.com/watch?v=O0vCz2KWMM0

Most of the commenters are not NT and by banding together, they can dominate the chorus and change the messaging. If you watched that video and then read the comments, you would have a much fuller picture of the issues it addresses and based on the volume of them you would feel like the there's a wide gap in what is being discussed and addressed.

Autistic people are much more likely be victims of police brutality, so the connection is there.

The connection might be valid, as both are intrinsic traits for which a person may be treated poorly by those with more privilege. And police do tend to treat both groups with greater disdain than they do, say, white neurotypical people. They even shoot autistic and other neuro-atypical people at an alarming rate.

However, I think it would be culturally insensitive to appropriate the name, especially if the public face of the group is white. Even allowing for intersectionality (ie black autistic), it would dilute the BLM message and if any of that dilution happens *because* of white privilege, it's likely wrong. *BUT* the only way to not screw up would be to ask. An approximate proxy would be to study how members of BLM react to other "XYZ lives matter" groups. Still best to ask at that point, rather than assume, as you won't be aware of the privilege that colors your determination and assumptions. But if they've spoken out about it in the past, give up the idea and find a new name.

Just as we Autistics don't like Autism Speaks NT figureheads talking for us, when dealing with other groups *always* follow the concepts behind, "Nothing about us, without us". Including appropriating a naming convention for a SJW-style group.

On what criteria would you group the "not NT" to band together? What elements would you use to create the "in-group" for the posse? What points of agreement would the hypothetical group require of it's prospective membership, and what points of disagreement would result in exclusion from the hypothetical group?