Published on 12, July, 2020
I'm enrolled in a support program for autistic people at my local university. I attended the Adults with Autism group last week that is facilitated by a NT autism disorder specialist.. As I gain more experience with this program, I'm starting to get the feeling that they treat all autism as a personal dysfunction and not as a difference that causes difficulties in a neurotypical dominated society. It's not acceptance-based, but more disordered-based. Continuing with the group session, there was a guest NT that was asking the group for experiences with masking to help build her presentation to an audience interested in learning about autistic people. I gave my experience, which was that now that I know I'm autistic, I've been engaging more with other autistic communities and it feels much safer to be myself rather than wear a mask to try to fit in and not pretend to be NT by saying things like, "It was sooo nice to finally meet you!" and "You look sooo great!" which makes me feel insincere. I did this respectfully, actually making fun of myself for pretending to be something I am not, and celebrating that I no longer feel compelled to do that. The guest ignored my comment entirely and did not acknowledge my presence throughout the hour-long session. She focused on asking the other members to elaborate on theirs instead. She then asked to individually interview members of the group to get a more personal conversation. I commented in the chat that I would be happy to partake in a personal interview. That was ignored. She then gave her email asking for members to email her if they were interested in an interview. I emailed her, and she did not respond. I find this incredibly rude, especially from someone claiming to be an advocate for autistic people. She could have said whatever about not being interested in my perspective for whatever reason because I would accept that as valid as long as it wasn't directly offensive (e.g. "No, because you're stupid.").
I'm upset because I feel like I'm being ignored and am at a disadvantaged position because any disagreement is due to being autistically dysfunctional, so my concerns are not valid. I need NTs to tell me how to interact because I'm assumed to be "wrong" automatically. Screw that! If I'm going to be treated like I need education and guidance from NTs for the most minor interactions, then I'm going to play their game. The group meets again next week, and I'm going to get to the bottom of this.
The plan I'm considering is to review what happened, then say I don't understand why it occurred. "I was under the impression that common manners maintain that when someone responds to a request for help, the person seeking support is expected to at least respond even if to decline the offer. Is it respectful to ignore people when they offer to help? If it is, I'm having trouble understanding it and can you explain that to me? If it isn't, then why did she ignore me if it's considered rude to do so?" I'm going to get to the most minute detail to see what happens. Let's get uncomfortable because I don't like being treated disrespectfully, and I want everyone to know that I will not tolerate it so they think about it next time they get the urge to do so.
Clearly, I'm angry, and think that if her presentation were to be authentic, she should include a slide on how she thinks it's acceptable to disregard the voice of autistic people when they speak about themselves while she is attempting to represent them to the larger population. I know that's unrealistic, but it would be valid to me at this point. Of course, I will absolutely not share this idea with the group or facilitator, but I want to be forthcoming with y'all that I believe it pending further discussion.
Someone please tell me if I'm out of line, or if you have any other suggestions.
She doesn't belong in this role. Who is this moderator accountable to? Is there anyone above her who - regardless of their NeuroType has reached a place in life they can work with more grounded Rules of Engagement which include a bit of wisdom?
I would send a VERY SHORT email saying: "I'm trying to be civilised and a Responsible Participant, not stressed out by being Stonewalled or Ghosted - this is not helpful. If you don't understand how Autistics use language, I'm happy to help you learn. Sincerely, ____"
The problem is the Language Barrier - most NeuroTypical individuals cannot even fathom just how different we communicate. And because we look human, and culture, language, tribal connexions / togetherness, all feel so innate - there will be few Types who literally cannot ever make sense of the extreme difference. I'll see if I can spell this out to make sense of it from our end.
The Neurotypical Model of Human (let's pretend we're a pre-packaged computerised toy for fun), comes with a motherboard that's literally wired to send and receive on the same frequency as every other NT. And because this this the Majority of Models out there even though everyone is unique, this internal structure is for Tribal togetherness. This means they pre-programmed to intake the download codes from their Social Surroundings. And so, they integrate these software systems without even thinking about it. In fact, to the degree, they don't get to choose whether or not they want these codes!
How this works: The Typical neurotype will then have a good command of the language, be able to fluidly navigate the 'Theatrics' of the culture. The other thing these codes do is help them dull their senses. This functions as a way of allowing an individual to be part of the tribe, focused genuinely on others rather than being subjected to environmental factors. It's an Ease of Being in the group. This internal system is called 'defence mechanisms' and they're designed to help this Type grow and mature and enjoy their way of Playing together through, a sort of Drama or Comedy - what ever had been deemed the appropriate theatre production of the moment. The Shakespearean "Life is a stage and we are merely players" is SUCH a perfect analogy here.
Now, the difference can be reconstructed to this: NT's are similar to the Actors and Directors, the Thespians and the Audience, all changing places! While Autistics can resemble the Crew. There might be a few inter-changing High Functioning NeuroTypicals in the Costume shop or the Orchestra Pit. But behind the scenes, creating the sets, the lighting crew... the cool kids - that's us! Making stuff. Not a conduit for the collective conscious, engaging in the 'Group Think' Telling the audience what they want to hear, making magic with the telepathic words being sent on the same frequency in the air. And the problem here is that we can end up resenting one another for lack of knowledge.
For instance, a crew member pops on stage to fix a broken light, not recognising there's a show actually happening. I think dress rehearsal, but for some reason this other sees a whole audience. I think maybe they're going a bit delusional, I genuinely don't see them and this light needs fixing and so on.
The fact is, Autistic communicating, like a crew, is something like working with walkie-talkies. We're all in the dark, so we'll spell it out and this is horrifying to the NT who is used to using magic words to trigger the effect. So if someone doesn't like that you can't speak on their telepathic frequency, it's a loss in translation and it's an inability to understand the ACTUAL difference between Autistics and NeuroTypical speak. But we can all learn to engage with philosophical wisdom, with mature understanding and by affording respect.
That was very insightful! If you don't mind, can you apply this perspective to my situation with the group guest and suggest any recommendations?