Monday, October 13, 2014

Dear Moderators of the Thinking Person’s Guide To Autism

Dear Moderators of the Thinking Person’s Guide To Autism,

You probably don’t know me- I’m not exactly a ‘big name’ in any advocacy circles aside from my own kitchen table- and I suspect that what I have to say is likely to be ignored given the much more powerful and influential voices that have already spoken to you on this subject. But, nonetheless, I feel compelled to write to you this week, compelled to express to you my disappointment and frustration with the events that transpired in multiple threads of your Facebook page.

I have held off on saying anything, as I believe I have the responsibility to allow Autistics to speak for themselves, first and foremost, on matters that pertain to their well-being. But as I have read the multiple posts (a few of which can be found here, here and here) it has become abundantly clear to me that there may in fact be a place for my point of view in this discussion. After all, your actions were taken in my name: the Allistic* parent.

(It should be noted here that my issues are secondary to those brought up by the Autistic population. It is not my intention or my desire to diminish these voices. Rather, I am hoping to add a new dimension to the dialogue.)

I am not here to rehash or restate arguments that have been made. Instead, I would like to respond to the one argument that strikes me as pertinent but that remains to be addressed: Your assertion that the actions taken (both in how you chose to initially censor the discussion, followed by your deleting the threads) were necessary steps taken to protect parents who were in crisis.

As a parent who was once in “crisis” when I happened upon your site, I feel that this is a subject on which I can fully speak.

TPGA, I want this to be made perfectly clear: Not only did your actions harm the Autistic population that you have claimed to represent and aimed to protect, they also harmed parents, progressive and non-progressive alike.

And there is significant damage that remains to be undone if you want this to be corrected.

First, I consider myself a pretty progressive parent. When I refer to myself as having been in ‘crisis’, this had much less to do with trying to process my son’s different neurology (after all, we did throw him a neurodiversity celebration the day that he got diagnosed as Autistic) and much more to do with the fact that I felt completely alone. I had no tribe. Everywhere I looked, I was bombarded with the “Autism Parent” culture- one in which I clearly did not belong. I needed to relate, but more importantly, I needed to understand. I needed insight. I needed hope. I needed experience.

When I found you, I felt that I found all of these things. There, in the community that you had built, was my village of like-minded parents, being led by those who were like my son.  There, amidst all the vitriol and fear, was a beacon of peace, hope and love.

(Ironically, it was also you who introduced me to Kassiane, who would become a formative role model for me, not only in how to parent my son but also in how to be a better, more intersectional and aware human being as a whole. She would also become my friend, one that it has pained me to see so pained.)

For the past two years, you have been one of the primary sources of my information on Autism and I have found tremendous guidance and support within your community.

But last week, you let me down. And you let down other progressive parents just like me.  How, you ask?

Whether it was intentional or not, by silencing the voices of Autistic people (and their supporters), you sacrificed one of the only spaces on the internet where I have not felt ostracized and rejected for my progressive views. In essence, by deleting our words and silencing our guides, you allowed the majority viewpoint of the ‘anti-Autism’ parent to permeate and poison our community- one of the few where Autistics and Progressive Parents were able to come together and work towards the common goal of Acceptance and love.

This was tragic and disheartening. But the ramifications are significantly worse than just losing my sense of community.

Inadvertently, what you have done has resulted in significantly weakening the headway that many of us progressive parents have made in creating a community in which Autistics and Parents can work together for change.

Over the course of the last week, I have watched as my friends and role models have posted repeatedly their reservations that ‘no space can be safe’ unless it is exclusively Autistic. I have watched the Autistic self-advocacy community recoil in fear of this type of event reoccurring. I have sensed trepidation in my relationships with them; have witnessed the chasm between us growing ever larger.

I believe that, for the most part, I have been able to mitigate this situation, at the very least within my own personal relationships. I have taken the time to reach out to my friends, to express my concerns, to re-identify myself as a committed supporter and friend of the Acceptance movement.

But it would be naïve for me to think that there is not damage to repair. And it would be naïve for me to think that the bonds that bind our two worlds are not weakened by this situation.

A fragile and tenuous relationship has been fractured; our communities once again being presented as ‘divided’.

And what is the most frustrating aspect of that is that the vast majority of posters on those threads, parents and otherwise, were in full agreement with each other. Those who were saying harmful, bigoted things were a very tiny, very vocal minority.

Unfortunately, because the threads were deleted, that fact will be lost in this discussion. This will be perceived as TPGA favouring “Paaarents”- and all parents, progressive and otherwise, have been tossed under the bus.

That is beyond disheartening. It is dangerous to our larger efforts, and it is harmful to my young son whose success and happiness depend on my ability to forge relationships between the neurotypical and neurodivergent worlds.

So, on that front, you have let me down. And you have let down parents like me.

But that’s not all.

Perhaps the cruelest, most dismaying aspect of all of this, is that you have actually let down the “parents in crisis” as well.

By failing to address the root issues that these parents were facing (ie: the genuine belief that their children are problems that are happening “to” them, as opposed to human beings that need to be understood, respected and connected with), you failed to address the one thing that could actually help them move past the crisis.

Unless the root of a problem is addressed, the problem will continue to resurface.

Parents who refer to their children as ‘animalistic’ or ‘psychotically violent’ are parents whose issues extend far beyond the immediate situation. Yes, they need crisis support. But crisis support, which validates the person, does not necessarily require validating the dangerous and harmful ideologies that are contributing to the crisis. That's one of the fundamental principles of non-abusive crisis management. 

It never occurred to me that I would have to explain this to you- you who have taken a strong stance against harmful language when discussing the murder of Autistic/Disabled people.

Words matter. Language matters. This is particularly true within the Allistic population that places an inordinate amount of importance on the ability to speak.

Just as we cannot allow for words like “empathy” or “understanding” to dominate the dialogue surrounding violence towards those with disabilities, so can we not allow language (and beliefs) that perpetuates dehumanization. This is precisely what words like ‘animalistic’ do.

In the threads, a significant amount of important information was conveyed to the parents ‘in crisis’. Genuine advice and support was offered from people from all walks of life. Yes, some of that was coloured with language that may be deemed ‘unparliamentary’ (though it is equally ‘unparliamentary’ to use ad hominem and attack your opponent without using swears…but I digress). But most of it was good information. Important information. Valuable information.

All of that information was lost. Lost to the OP, lost to those who commented in support of her, and lost to any lurkers in crisis who might have been following along.

So where will these people in crisis turn when the information that they are seeking is removed from them? Whom will they ask if they can not ask Autistic people directly, in a community that is safe for Autistic people?

I don’t have the answers to that. I desperately hope that they find other resources focused on support, acceptance and love. But I know all too well that these are few and far between in the sea of hatred and fear mongering that dominates the Autism Parent discourse.

Yes, TPGA, you let parents down. We came to you seeking guidance.  We came to you seeking help. We sought out the community of people you have built. And you, in what I believe to be a move of panic and fear, silenced this community.

By failing to delete and moderate the harmful comments, you inadvertently validated them.

By censoring and removing Autistic voices, you took away the primary reason that most of us are on your page to begin with.

And by deleting the threads in their entirety, you also deleted the wealth of experience, knowledge, perspective and advice that had been shared by hundreds of likeminded people, Autistic and Allistic alike.

TPGA, I was following those threads very, very closely. You see, I was sick last week and had little better to do than read every single notification that hit my Facebook feed. I read every single post. I took in every single comment. And I, myself, commented often- something that is actually very rare for me to do.

I saw how quickly the threads moved. I saw how overwhelming it all became. I understood your need for immediate and decisive intervention.

But how this intervention was handled was disastrously foolish and short sighted. And the ramifications of the decision will likely continue to divide our already stressed community more than we can afford.

In the future, I hope you will consider the following

  1. Apologize. For real. Truly and sincerely. While you can not undo your decisions, you need to acknowledge the harm that these have caused and take responsibility for how that has affected your community. (Yes, this includes apologizing to Kassiane, whom I believe firmly was scapegoated in this situation. I will not touch more on that in this post because others have already said what I have to say. But I am deeply disappointed and disgusted by how she has been singled out and mistreated.)
  2. Get more mods. (No, really. Just do it. Like, yesterday.)
  3. Learn how to hide threads as necessary to give you more time to properly address them, including culling harmful posts as per your comment policy. There is no limit on how many times a thread can be hidden and unhidden, and this can be a useful tool for moderating discussions that are moving too quickly to moderate in real time. (If you do this, explain your actions and supply an approximate timeframe for when the thread will be made available again.)
  4. Consider the implications of deleting threads in their entirety, including the disrespect that it shows every single person who took the time to post on them in an effort to share their knowledge, information and perspectives.
  5. Apply your rules fairly, with an understanding and respect for the fact that certain language/stereotypes can be greatly triggering to many Autistic people and can result in ‘crises’ of their own that are at least as valid as those of the parents.

I hope you consider these actions, but I’ll be honest when I say that I will probably never know if you do or not, since I no longer feel that your community is a safe place for my family and am unlikely to revisit it.


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