You don't deserve to be unsupervised in public.

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woohooligan's avatar

Literature Text

"You don't deserve to be unsupervised in public." How does that statement make you feel? Comfortable? Confident? Supported? Scared? That was the first in a string of harassment my wife received and I had hoped it would soon be over, but striving for resolution has lead me to larger concerns that remain unresolved over a year later. And because of these concerns, not just myself, but the entire autism community needs your help.

Imagine for a moment that you are autistic or have some other disability and you've moved to a new town where you don't know anyone. You decide to seek out a support group for your disability and you find one. You attend your first support-group meeting and it seems good. Several days later, you wake up to discover that the support-group manager (SGM) is harassing your wife on Facebook. The harassment is in response to events that you and your spouse personally witnessed, but that SGM only heard about second-hand from a friend (AF). You're scared, because you don't know how much influence SGM has, whether her opinions will make life in this new town difficult for you. You decide it's probably just a misunderstanding and if you just talk to SGM, you can give your side of the story and work things out and you can still be a part of the support group. But when you ask SGM to hear your side of the story, they refuse, saying "You do not get to have your side of the story because you are tilting at windmills and I am not your trusty sidekick Poncho." Then they begin piling more insults on you in addition to your spouse. They insist that your spouse is abusive, and tell AF to get a restraining order against your spouse.

At this point, you decide that you won't be able to make progress with SGM, so you need help from someone further up in the organization to resolve the issue, so your side of the story can be heard. The group is a non-profit organization with the goal of helping people with your disability, so you send an email about the situation to their general inbox. For ethical reasons, because you don't know who will read that email, you withhold SGM's name (although you include a redacted copy of your Facebook conversation). To your surprise, you receive a response from the president of the non-profit within a few hours, saying that they're very concerned about the situation and they just need SGM's name. You're relieved, you feel like progress will be made and the issue can be resolved, so you give them SGM's name. A day or two later, you receive an email from SGM, informing you that you've been banned from the local group. You send another email to the president, informing them - your email is ignored.

A week passes your spouse receives a subpoena from the local court -- AF is accusing your spouse of "civil stalking/menacing", in an attempt to receive the restraining order that SGM recommended. You know, because you were present at the original event, and because the court gave you a copy of AF's written accusation, that nothing your spouse is accused of actually happened. But knowing that your spouse is innocent doesn't eliminate the anxiety you have about appearing in court. You do some research to find out what having a restraining order against your spouse might mean and discover that it could have lasting repercussions. You send another email to the president of the support group, informing them of the new situation and asking if they could help you locate an attorney for your defense -- again your email is ignored. Your day in court arrives. When your spouse comes out of the courthouse they tell you that the judge caught AF in at least one lie (using text-message history). The judge informed AF that they always have the right to continue to press charges, no matter how tenuous their case, but that he recommends she drop the charges because there are no grounds for a restraining order and he would be forced to rule in your spouse's favor. AF reluctantly agrees to drop the charges.

Although you suffered a great deal of anxiety as well as lost time preparing for bogus charges in court, you're relieved that your spouse's testimony in the pre-trial proceedings was enough and that your court nightmare is over. There's still a problem however, because your spouse was harassed and then dragged into court, and in the several weeks this happened not only has there been no apology, no one has even been willing to hear your side of the story about an event that you personally witnessed. You now know that SGM, who harassed your wife, did discuss the harassment with the president of the non-profit, but you only know this because AF mentioned it in the pre-trial proceedings. That's not how you should have heard about it. You send another email to the president, informing them that you are unhappy about not being heard -- you are ignored again. You wait a week. You wait a month. When there's no reply after a month, you send another email stating that you are unhappy about not being heard. You are ignored again. You wait a week. You wait a month. You wait six months. You send another email stating that you are unhappy about not being heard. You wait another six months. You send another email - you're ignored again. It's obvious that the non-profit that claims to help people like you, is ignoring you. It's been over a year. What do you do?

So with no other option left to me, this is an open letter to the Autistic Self Advocacy Network (ASAN).

I really did NOT want to write this, I'd much rather spend these couple of hours working toward my career change goals. I don't feel I have a choice. That's why it's taken me a year to write this. ASAN recently appointed a new president, Julia Bascom, who believes it is appropriate for them to ignore people who have been harassed by local ASAN support group managers. Julia Bascom is the person who responded to my first email to ASAN and has subsequently ignored every other email I've sent, despite the fact that the only thing I've ever asked for is to be heard, and possibly an apology. Truthfully, there are a variety of explanations that I would have accepted, even if I didn't like them.

They could have replied to my email to say: "Thank you for your email. We have discussed the matter with the Cincinnati support group manager and feel that no further action can be taken at this time."

I wouldn't have liked that response, but I would have accepted it. Instead, I've been completely ignored. I only know that they discussed it with the local group manager (Samantha Shanti Au, who banned me -- that hasn't changed), because it was mentioned by AF in court. To date I've sent them at least a half-dozen emails, probably more, including emails with the transcript of my Facebook conversation with Samantha, my unused deposition from court, and I've sent them not just to Julia Bascom, but also to Ari Neeman and back to ASAN's general inquiry email address, all of which have been ignored.

This is not acceptable behavior. ASAN is supposed to help autistic people like us. The reason I'm forced to write this, is because I can't know how many other autistic people might be hurt by this policy of ignoring people who are having problems with their organization. Even if I never have to talk to Samantha ever again, there's no assurance from ASAN that they're monitoring that situation or that they will take further action if they receive more complaints about Samantha (or any other group manager) in the future. This is less than the level of communication you would receive if you were a consumer reporting on "bad customer service", but it's worse than that, because ASAN and its support groups are supposed to help us. Instead they're just letting one of their support group managers harass someone, without hearing the other side of the story or even responding to the complaint with a simple, "we're doing what we can." What happens if an ASAN support group manager harasses you or your spouse? Can you expect any kind of help or support from the group?

I'm calling on ASAN to create a sensible abuse-reporting policy that gives autistic people an avenue for resolving these kinds of issues with their support group managers or other staff, and to make that abuse-reporting policy public. They need to have a transparent plan in place for these kinds of problems, with opportunities for public comment for improvement of that plan. I recommend that plan include some method of professional, third-party mediation, so that in situations like the one between Samantha and myself, a neutral party can help bring some kind of resolution.

If Julia Bascom continues to be their president, and if Samantha continues to manage their Cincinnati group, that's great! More power to them. Having said that, if Bascom continues as president, she needs to be inundated with complaints to let her know that ignoring us is not acceptable. So I encourage you to contact Julia Bascom today and ask her what she's doing about this. Ask her what her plan is for ASAN's policy on reports of abuse from members of their organization. And/or contact Ari Neeman, their previous head (who is a friend of hers and has worked closely with her at ASAN). Or contact anyone else on their staff page. Make sure they know that they need to take reports of abuse from within their organization as seriously as they take reports of abuse from others. "Nothing about us without us."

Julia Bascom

staff page:…

p.s. For anyone who is curious, here is the complete transcript of my Facebook conversation with the local support-group manager, Samantha, wherein I explain my concerns and she refuses to hear anything I have to say, while claiming instead to have magical, mind-reading powers.

DeescalationThis has been uploaded to my account for reference, as an attachment to my open letter to ASAN about their abuse-report policy.
I recommend you start by reading my open letter here:

[EDIT: I edited this transcript of conversations between myself and Samantha "Sami" from the Cincinatti ASAN group to remove identifying information. I did this to make sure that whatever I was sharing was shared ethically.]
ASAN: Samantha "Sami" Shanti - the Southwest Ohio (SWEO) ASAN support group manager 
FRIEND: Zon - Amy [redacted] - this isn't about her, I'm not trying to get her in trouble
TOWN: Dayton -- possibly Cincinnati, but I think it only appears once
- after rereading it today I realize I missed an instance of "Cincinnati"
unfortunately when I originally edited it
These redactions are the only alterations to the text
[EDIT: these comments were prior to the event]
Nov 20th, 9:49pm
Me: Hey [ASAN] I wanted to say briefly that I may seem a bit more ... on

Since then I've spoken with members of the Autism Society of Greater Cincinnati who say they've had similar experiences with ASAN's local group manager, including the cyber-bullying.

Other people I've found online receiving no response from ASAN about transparency, honesty or abuse within their organization:

Autistic Aphorisms, May 2010
Non Response 2-months later

Melody Latimer, a Disability Consultant in Plano Texas used to work for ASAN and has some words about their culture of abuse and silence, and ultimately calls for the same thing I'm calling for here - not for people to withdraw support, but for the organization to develop transparency and accountability. She published this article last summer, around six-months after Tiffany and I had our problem with the local group manager in Cincinnati.
This is an open letter to the Autistic Self Advocacy Network (ASAN) regarding their policy for handling reports of abuse from members of their organization.
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BreakNeckViolet's avatar
This makes me want to scream from a rooftop. :hug: I am SO sorry that you have to experience such blatant, raging disrespect. Do you mind if I share this with a couple buddies of mine, spread the word a little?