When you receive an autism diagnosis, where do you go for information and support? Many of us go to the internet and spend countless hours frantically researching everything we can about autism and how to support our child. At some point, most of us will find our way to a site called The Thinking Person’s Guide to Autism. It seems like a great resource with a lot of information about how to respectfully support your child.
And they are. Or, at least, they used to be. What started out as a place for autistic adults and autism parents to meet and share stories and ideas, as well as provide a unique, autism-centered viewpoint, has devolved into a place that is no longer welcoming of parents and is, in fact, hostile toward parents. It has morphed into a bastion for militant, angry autistic adults to run roughshod over others and insult parents and even other autistic adults that do not tow the line of their propaganda.
Many of us have watched the change take place over the last few years. And some of us have been at the receiving end of the vitriol that is allowed to be hurled at anyone offering a slightly different viewpoint. The most recent example just took place Sunday, when a discussion on their Facebook page about how evil and harmful ABA therapy is turned into a parent-bashing forum after a parent commented that they had found some positive benefits from ABA, and that they closely monitor to make sure it’s not done in a punitive way. One of the most repetitively hostile autistic adults, Kassianne Sibley, chooses to put the parent in her place by invoking the name of a parent that recently tried to commit suicide and take her daughter with her. (comments by other participants have been removed as a courtesy and have no bearing on the following remarks)
Sadly, this is not an isolated incident. Kassianne was formerly a moderator for their site, and this kind of friction was a regular occurrence. While she is no longer a moderator, she is still allowed to actively engage others by comparing them to parents that have committed, or attempted to commit, murder. And we are endlessly reminded that she was allegedly abused as a child, and we’re expected to provide her an open forum to dictate how and what autism advocacy should look like. If you happen to point out the obvious, that she is allowed to castigate people at will, well then you will get banned.
In short, a site that was once a communal home for those in the autism community is now a place for militant, angry, and short-sighted adult autistics, where no other viewpoints are allowed to be discussed. If you do not agree wholeheartedly with their rhetoric, you are removed. It’s more than a little ironic that a group that came together so that autistics would have a voice, now does not allow anyone else to have a voice.
One could surmise that the group just does not accept parents and the point-of-view they offer. However, I know first-hand of an autistic adult that served on their board, who was ostracized by several people. When this person spoke up about it, she was bullied further until she finally left the board. So it doesn’t even matter if you are autistic, the bottom line is that if you don’t agree completely with their propaganda, then you will be harangued until you leave.
This is the very same group that boycotts Autism Speaks for not listening to autistic voices, yet they shout down anyone whose opinion is different from their own. They hate people for stereotyping autistic people, but they stereotype parents, and even go so far as to use the name of a parent charged with murder when disagreeing with a parent. That tactic is as ugly and hateful as someone using the name Adam Lanza in disagreement with an autistic person.
And you know what? All of this is okay. It’s their site, it’s their place to do whatever they want to do. The issue is when their site is made to seem like a collaborative and welcoming group. And the issue is that their group has gained enough credibility to be cited by different pages as some kind of authority in regard to autism.
What they don’t realize is that they have become part of the very problem they say they’re trying to combat. They want autistics to have a voice, to be taken seriously, to be considered competent and equal. And they try and accomplish that by silencing others, bullying, and ostracizing. They have damaged their own cause and don’t realize how many people can clearly see it. But this approach has a way of writing its own destiny, and solidifying a cause in the annals of history as one that never got off the ground because of its faulty methodology.
One friend recently came to me and made this comparison: “trying to learn about autism from the people at TPGA is like trying to learn about Islam from the Taliban.”
My hope is that parents that are just discovering the autism community don’t find this site and think that it is representative of the entire autism community. It’s not. There are actually groups of autistic individuals and parents that are respectful to one another. The trick is finding them in the endless sea of the internet. Maybe, just maybe a group of people will come together to form a new group that offers the real sense of community that TPGA used to.
Until then, I’ll be boycotting their page. It’s not the kind of short-sighted, hostile, and negative group that I want taking up space in my life, or influencing my child. And clearly they don’t want me, or many other parents. Luckily there are many other positive role models out there to choose from, like John Elder Robison or Holly Robinson Peete (who is not autistic, but has an autistic child).
And I hope and pray that new parents find their way to more supportive places.
EDIT: I want you all to know that an advocate was kind enough to stop by and leave the following comment for me. I have no idea who Leslie is. She must be running whatever site this person is talking about by herself. If you are Leslie, please contact me and identify yourself.
“you’re not boycotting TPGA. You were BANNED. So it is not a matter of until they do anything. It is a matter of you’re not welcome.
Probably because you’re cruel.
Probably because you habitually disrespect Autistic people.
Yeah, you’re Autistic. I know. I remember when you pulled that one out of thin air at the most opportune time. Not saying you’re not Autistic. Am saying you don’t get to use it as a weapon and maintain credibility.
You clearly cannot stand hearing truth. If my truth was your truth, I couldn’t stand it either.
You and Kassiane are both aggressive and profane. I’ve got zero problem with that (except for your hypocrisy). But the true differences between the two of you are that Kassiane is: right, genuinely kind, and brave. Where you have consistently proven yourself to be: wrong, cruel, and a coward.
Nice job you and Leslie and Jill did with that Autistic hate blog and phony facebook spoof accounts a while back by the way. You’re a bunch of hateful bullies and oh so much like your pal Kelli Stapleton.”
You can see the post at the bottom down there.
Oh wait, I forgot to mention that it was most likely Beth Ryan that left this lovely nugget. Take a look at my stat counter:
You’ll notice it’s the same URL as the comment, which originates in Vermont, as does Beth Ryan. See, I can prove it:
Thanks for stopping by, Beth. For THREE HOURS. Weirdo.
Also, thanks for proving my point. I appreciate it.
Edit #2: It seems as though my special reader, Sandy (from Texas), is hellbent on having me post the entire TPGA thread. The reason it was edited down was simply to remove extraneous information and prevent this from being the longest post in the history of blogging. But for Sandy, I will add it on here to the bottom. I do not have the time or proper program to edit out all names and identifying information. Sandy has asked for unedited documentation, and so it shall be.