ASANs Past Abuse and Moving Forward

Home » Advocacy » ASANs Past Abuse and Moving Forward

With Ari Ne’eman’s announcement that he will be stepping down at the end of the year today, I knew I was out of time to find a large source to post what you are about to read. Please share it far and wide so that the Autistic community can know what ASAN has done and continues to do. We must not allow the abuse to continue.

Ableism, pronounced ˈābəˌlizəm, noun – discrimination in favor of able-bodied people.

While disabled activists work tirelessly to create a world where disabled people don’t have to face ableism, it’s pretty much expected to occur on a daily basis. Even in places where ableism should not exist, it can run rampant. Institutional bias, workplace cultures, these structures can easily keep ableism hidden from the public eye even in those companies or organizations where ableism should be the least of a person’s worries.

Such is the case with the Autistic Self Advocacy Network (ASAN). The nation’s leading Autistic-run organization has only been in existence for 10 years and in 2011 gained their 501(c)(3) nonprofit status. In that year, ASAN hired its first four staff members, including Ari Ne’eman, the organization’s self-appointed president. It would be easy to suggest that this is when the abuse, inaccessibility and exploitation started. The truth is, the bias started before then with chapters that would startup and shutdown. The truth is these first employees, in the end, are who helped to reveal the pattern.

I was one of these first hires and the one to last the longest. In September 2013, I quit after being threatened with being fired. There were definitely grounds to fire me. As with many Autistic people, when under a great deal of stress, meltdowns can occur. Rather than meet these outbursts as communication like ASAN will typically tell employers, teachers and professionals to do, the meltdowns were quickly met with punitive measures. I continually stated my needs for particular accommodations and a decreased workload.

It would be easy to discount me as one disgruntled former employee, but the truth is, I’m only one of several staff members to have either quit or been fired due to this toxic work environment. This doesn’t include the countless volunteers and chapter leaders that also often cite the same problems.

With no way to formally ask for accommodations, no channels to assure that they are given due consideration, staff often is left to the whim of senior staff. Complaints have to be brought directly to the supervisors they are lobbied against as there was no structure to speak to an unbiased third party. Unfortunately, this only drives most staff members to give up requesting accommodations even when new needs arose.

Are accommodations alone enough to call an organization toxic? Not at all. This is only a tip of the iceberg. The story of ASAN starts with the first chapters of the organization. Take one chapter that broke off from ASAN after the chapter leader was bullied during a protest. Another who in 8 years has had 5 chapter leaders and is now defunct. It was to be the flagship subsidiary after federal grant money was awarded to turn it into a non-profit organization. Most chapters will never see any significant guidance from the national organization. Of those that do gain membership and become successful, most will be asked to volunteer their time and energy to participate in grants they will never directly benefit from. Most will not be reimbursed for money they spend on banners, Meetup sites, photocopies and many other necessities to running an ASAN chapter. This leaves an already vulnerable, economically-disadvantaged population more destitute.

While it can be argued that a young organization is going to have growing pains and lack funding sources, the question one must ask is why these practices continue. Are only economically advantaged autistic people expected to run a chapter? And why has an organization that’s drastically increased its revenue not hired staff to support their autistic chapter leaders? These chapters after all are on the front lines in serving the autistic population the organization purports to represent.

How do these practices, the exploitation and inaccessibility, continue? The simple answer is silence. The ingrained culture of silence and silencing techniques are the guiding principle. There’s a fear that is embedded into each autistic person who works for the organization whether as a volunteer or an employee. This fear starts with senior staff befriending employees and volunteers. Then those friendships are twisted and manipulated to get what the organization needs.

What the organization needs most though is silence. Have a Facebook page? Don’t you dare post anything contrary to the organization’s held beliefs. That’s not what we should represent to the community. Disagree with the lack of minority representation? Bring it up at your own cost. If you bring it up often enough, you may be appeased by bringing on board a token minority. In a few months, or maybe a year, those minorities will be gone anyways.

Most of all, do not criticize any decisions handed down from the top ranks. You don’t want to give ammunition to the enemy. If you speak up, you will destroy the organization’s image. No one will trust Autistics again. You will kill the movement! All the hard work you’ve put in will be for naught because dissent shows Autistic people are not united, are not a cohesive community.

College dropouts are the best workers.

What seemed at the time a joke I figured out years later was a way of reminding his staff they had nowhere else to go. You didn’t have the degree or skills to work elsewhere. You couldn’t live without the job, if you call choosing between rent or health care living.

Other bullying and abusive techniques are so much clearer to me now. Like the use of triangulation to pit employees against each other and character assassinations as they got rid of others were common practice. Even erasing former employees from the work they had accomplished.

I thought being an abuse survivor I would be able to recognize these things, but I didn’t. Not until it was too late. My family, my husband and kids, had moved halfway across the country on the words of this organization. Away from friends and family. The cause was definitely worth it. The work we were doing was making an impact on policy. And we were helping change autistic young adults lives. The message about autism stopped looking so bleak.

But the price to my personhood, the price to the people I was complicit in exploiting, was far too high. Then in the end, I was expendable. My accommodations were not met. My abuser got to start with his character assassination of me. I turned to the board hoping to enact change to help those that came after me. It was the only thing I knew to do.

After that week, I reached out to other former employees, former people that had been affiliated with ASAN. The picture became clear, this had happened to other people. This wasn’t just me. It was a revelation.

I was sure though that my letter to the board was going to cause a change. I kept a small eye on the website and Facebook for ASAN. They hired some of the positions I suggested to distribute the workload. They were expanding to include more than the easily recognizable people in the Autistic community.

But then it happened. Staff changed suddenly. New staff was brought on. Then it happened again. For an organization that’s only been employing people for 5 years, you’d expect to see some turn around. But many staff members don’t last for more than a year, though.

I started asking. Telling my story. Explaining the tactics that were employed on me. It’s been 3 years, but the wounds are still so deep. But I’m tired of being silent.

Then suddenly, more former staff and more volunteers reach out. They had similar things happen to them. They’ve seen the same patterns. I promised not to disclose any of them here as people are still afraid. As fresh as my wounds are, theirs are even more so.

People who were fired because of an inaccessible work place. People who hide from even the letters ASAN because it triggers massive amounts of anxiety. People who became homeless because they were bullied and stressed so far that they could no longer do the job.

I was the lucky one. I had the privilege of a husband and a place to return in my home state. I’ve been able to collect myself and process what has occurred to me from the safety of my home. But the others? Most do not have that luck. And so they continue to suffer in silence. All so an organization can condemn those that do what they do.

So what am I asking? I’m not asking for anyone to withdraw their support of the nation’s leading Autistic organization. I’m not even asking that people stop donating to them. I am asking that there be accountability to the Autistic community. I’m asking that ASAN should have their membership vote on its president and board members. I’m asking that the Board of Trustees should appoint a non-staff member to be a liaison for staff issues. I’m asking that every single person who becomes involved with ASAN should know what they’re getting into before they join as a volunteer or staff member. Finally, and most importantly, I’m demanding ASAN pay their staff members a livable wage for a job with proper accommodations for their particular traits and disabilities.

What I ask is that every community member demand these changes as well. Not for my sake or those who have been railroaded before me, but for those who come after all of us. Each year, ASAN brings on new staff that are unknowing and unsuspecting of the problems within. These people have a right to know and a right to not suffer the same abuse, bullying and eventual abandonment.

You may also like...

20 Responses

  1. Melissa says:

    I’ve worked for ASAN and this entire article is BS. They were always accommodating and reimbursed me for everything I spent to help them. It sounds like the author is just sour he/she lost their job, and wants to blame ASAN instead of their own behavior. A diagnosis doesn’t give you an excuse to be abusive to other employees. If you create a hostile or abusive work environment they have every right to fire you.

    • Dee says:

      “I’ve worked for ASAN and this entire article is BS.”

      Discounting someone’s experience as BS is abusive. One person cannot make a hostile or abusive work environment. It either needs to be systemic or a supported dynamic in order to have a pervasive effect. Too easy to blame it on someone losing their job. It doesn’t wash when the patterns reported have been experienced by others.

      The person clearly stated she does not want support for ASAN to be stopped. That demonstrates something beside what you’ve pointed out.

  2. Patricia says:

    “It wasn’t like that for me” is gaslighting.

    I’ve followed ASAN for a short while. I’ve enjoyed their resources, and found many valuable. I’ve had no personal relationship with the organization and no problems.

    I cannot speak to either of the experiences mentioned here, the author’s or Melissa’s – BUT, to say that the writer is wrong because YOU didn’t experience the same issues is not cool. It’s done to autistic people and marginalized people of all kinds.

    Every organization has issues and makes mistakes. What separates them from each other is their ability to listen and learn. If we want Autism Speaks to do it, we better not be afraid to do it in our own backyards.

  3. Melody says:

    Melissa, your comment is exactly why it’s taken me 3 years to speak up. Do you know how hard it is to speak up about abuse after you’ve done damaging actions that you know you can’t defend? Yeah, I know I screwed up. Believe me.. I know. I cannot take back what I did. I cannot change the past or defend my actions. Only I can control them.

    I’m glad I’ve taken the time to recognize fully what occurred to me and what I did. Because if I had written this in those few months following my resignation, I would have taken your words to heart. Now I can see them for what they truly are. Someone who is trying to deny me my experiences to hide the inconvenient truth that ASAN abuses autistics.

  4. Lydia X. Z. Brown says:

    It’s entirely possible and in fact normal for a individual or an organization to treat different people in very different ways, especially where abuse is concerned. I’m genuinely glad that you, Melissa, overall have had wonderful experiences with ASAN, but not everyone has had that same experience. I know of many people for whom ASAN was literally a lifesaver, and I also know others who have experienced abuse and a hostile environment within ASAN or particular people within it. Don’t use your own positive experience to dismiss someone else’s negative one.

  5. Shawna says:

    I’m having a little trouble understanding this post.

    I’m not entirely sure what events happened to you and what happened to other employees. There’s textbook descriptions of abusive tactics, but no specific examples of what actually happened to you.

    There’s no mention of who the abusers were – just one use of “he”. Is “he” supposed to be a reference to Ari Nee’man? Or is it some other male employee of ASAN?

    You said you quit before being fired for “definite cause.”.. In the article and the comments, you allude to some wrong actions on your part and call them “indefensible.” Then you strongly imply said actions were due to a meltdown triggered by ASAN actions.

    A large part of this post also didn’t seem to be about abuse, but were accusations of financial jiggery-pokery and racism. Shouldn’t that be a separate issue than employee abuse?

    I’m not sure what exactly is the problem with an organization that monitors employees’ social network accounts and has issues with employees’ posting negative things on the organization. Isn’t that a pretty much standard thing for businesses and organizations? It kind of makes sense – what good would it do to complain on Facebook to other people who can’t do anything about the problem? Those other people wouldn’t know the whole story and all they’d be able to do is give sympathy to the poster, and tell others that the business was trash.

    I can’t tell if I’ve missed something, or what. This post is a warning that there’s problems in ASAN, right? Shouldn’t we know who’s been abusive and what they’ve done so they can’t do it again? If these people move into another organization, shouldn’t other people be warned of past behavior?

    It’d probably help a lot if some of the other former employees you say had similar experiences come forward and talk about their experiences., It’s not as easy to dismiss multiple people’s testimony.

    I’m not gaslighting anything, I’m legitimately confused.

    • Anna says:

      I’m inclined to agree with you. I’m confused about when and where the actual abuse took place in this story.

      • Shalia says:

        The appropriate response to abuse victims *isn’t* “I don’t believe you, go into more details about your abuse even though you might risk legal repercussions and further trauma to yourself”, it’s “I’m so sorry, how can I best support you and help you heal”.

        It’s highly inappropriate to do anything else.

        • Kathryn Hedges says:

          There’s a difference between “I don’t believe this was abuse” and “I can’t tell what’s going on in your story.”

  6. Melody says:

    Shawna, many specifics were left out to hide the identity of other staff members. The abuse I had was by all other senior staff, but majority was Ari. The reason he was used is because at the time Ari was the only male staff member. Even now, he is only one of two staff members.

    Specifics to me:
    I was overworked to the point of having regular anxiety attacks and dissociative amnesia episodes over the course of the last year I was there. When I asked for reductions in workload to match my capacity (which were not unreasonable as shown by the fact that they had to hire 3 people just to replace me after I left), I was ignored.

    As my stress grew, I was targeted as being subordinate because I asked for office policies to be enacted.. Like any of them. Paid vacation days, sick days, a way to formally ask for accommodations, social media policies, job descriptions without catchall phrases like “and other projects.” I started having several instances where I was not given job relevant information and expected to still do my job accurately.

    In the end, I was targeted by all senior staff as being unreasonable and unable to “control” my behavior. I had repeated attempts to coerce me into taking psychotropic medication despite the fact that I was attempting to become pregnant with my daughter. Medication I will add that would have most likely caused her to have birth defects.

    As for what I did… I argued and raised my voice to both my supervisor, Ari, and my coworker, Julia Bascom. I did so several times over the course of two weeks because every other attempt to staff to support me, needed accommodations such as a simple checklist of what needed to be accomplished, emails giving any instructions whether than being told them verbally, and not to be asked to both participate and take notes on conference calls which I could barely understand what’s being said due to auditory processing difficulties.. and in the end, I did so to Julia because I felt slighted and was recovering from dissociating from being pushed too far during a meeting with Ari in which my husband had to come as my representative. I agree that raising my voice over this perceived slight was against workplace policies.

    As for other former staff voicing their abuses, it is up to them to speak out. But since many are fearful of losing their ability to continue advocating within the autistic and disability community, I do not know how many will echo what I have said and tell their own stories.

  7. a. says:

    First and foremost, so sorry to the original poster that you have experienced this. Workplace abuse is so tough. Solidarity and tenderness your way.
    I want to reiterate that some employees can have positive experiences and other employees can have negative experiences within the same organization, especially if they are coming from a drastically different background. For example as a multiply-disabled employee perceived-as-female I don’t get treated nearly as well as my abled or even singularly-Disabled male coworkers. I get treated better as a white employee than my coworkers of Color. Especially when people have different access needs, the exact same treatment can be acceptable for one employee and abusive for another (e.g. requiring the same hours of work per week might far exceed one employee’s ability level thereby being an unreasonable expectation while those same hours might be a comfortable fit for another employee). Let’s make sure to hold space for, affirm, and center the realities of the most marginalized.

  8. Jen says:

    Thank you for taking the time and energy to share your experience.

  9. Jane Strauss says:

    Melody, it took guts to come out and speak truth to power. I knew you were gone from ASAN and had wondered what happened but was not in the loop. I wish you the best, and am left of two minds about ASAN now, not at all certain that anyone in the “autism community” is worthy of trust. I have now pretty much withdrawn from autism advocacy as well, since the politics of that world generally appear as toxic, if not more than, party politics in the US. Is there a future for us? I don’t know. I only know that a significant number of people I like and value are being hurt, at the expense of a small minority who enjoy power, real or perceived.

  10. remainsanon says:

    Thank you for speaking out. Not only have i been a victim of these exact things largely due to my being autistic and know how damn hard it is to speak out publicly and advocate for one self, I have seen it happen by ASAN members directed toward lay autistics online! The same kind of silencing, classist and cognitivist inaccessibility and refusal to accomodate those who arent Big Name Can-Do (shh dont say high Functionjng) Independent Superhero Autistics and who need more help due to cognitive, sensory, or speech issues. I decided a long time ago ASAN did not stand for me or my people, but are an insular group developing their own high horse culture.

  11. Hobanthornton says:

    Melody, I knew you back in the day. I was involved with ASAN early, early on. I was unceremoniously dumped by the wayside over something that should have been small, and trivial. Ari took issue with a blog post I made, and said that personal, non-work related conversation in my or my friend’s living rooms, the private of my home, would reflect negativly upon his organization. A few years later, he started his own personal blog, in which he stated that it in no way reflects ASAN. Tough luck, big guy. You, yourself said that it does.

    Since leaving ASAN, I have had its members try to have me fired on zero evidence (my employer at the time thought they were preposterous), I have had members of ASAN personally attack me, gang up on me, try to convince me to commit suicide, and even viciously threaten my life. The reason? Only that I did not fall lockstep and jackboot in line with their very narrow view of the world.

    I wanted to part amicably with ASAN. With these horrid attacks, however, they have made an enemy. Since that time, I have spoken to hundreds, even thousands of people. I have mentored younger autistics. I have counseled s great deal of parents, health care providers, and workers. I have the ear of some very powerful politicians. With each and every one of them, I lay bare the facts, and suggest that they stay far, far away from ASAN. I am proud to say that at least 90% of them have. There is no room for bigotry in this world.
    I will not be responding to comments, as I am still very guarded when it comes to this issue.

    Melody, if you know who I am, feel free to contact me privately. I do not want my real name on here.

    Thank you, for speaking out.

    • C says:

      Random comment, I find it interesting that politicians will dump ASAN instantly when someone says boo, but will not do the same if it’s Autism Speaks.

      ASAN needs to clean its closet.

  12. Sam says:

    Hi, Melody. Thank you so much for pushing through your discomfort to publish this. <3

    Around the time you were publishing this, I was having my first real exposure to ASAN, in the form of cyber-bullying from one of their local support-group managers here in Cincinnati. After receiving no response to many, many emails to their upper-management, I ultimately decided that I had to write an open letter to them online, because they were obviously going to ignore me until the end of time. I asked for the same things you asked for – policies that result in transparency, integrity and ethics. They may never respond to my open letter, however, at least if it's public, it can serve as a warning to others who might be interested in their groups.

    My letter about my experiences, and a few links to other people having similar experiences, can be found here:

    Thanks <3

  13. Jade says:

    Glad it wasn’t just me.

    I was picked to start a central New York chapter around 2014ish. After being approved, I was given almost no direction as to what to be doing. I also ran into major issues at my college, with them approving accommodations, but letting the professors decided if they felt like honoring them. I repeatedly contacted asan for some advice and direction on that and got radio silence.

    The college thing damned near ruined my life (I moved cross country to do a PhD there). It never worked out. As the stress got worse and worse, asan got pushed to the background and then just never happened. I never heard one word from them. It was like I didn’t exist to them.

    It just felt so awful that they wanted me to help them, but didn’t want to support me in the least.

  1. July 19, 2016

    […] Source: ASANs Past Abuse and Moving Forward – ASParenting […]

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.