Considering Weaponizing my Autism

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.

Parents
  • Alright, my people.  My initial idea was to bring it up with the group facilitator (not the rude guest) at the next meeting, but I'm open to the advice to write an email directly to the guest, who is an ASD Specialist (case manager) in the same autism support organization.  Below is a draft.  I'm laughing at her needing to read all that and address my concerns.  It's so autistic lol.  But seriously, the point isn't to be vindictive.  They are valid concerns, and after seeking considerable therapy for abusive relationships, one thing I learned is to not let anyone be dismissive or rude without pointing it out because that's how manipulative people slowly push boundaries, so I'm actually following through on the skills I learned during post-narcissistic abuse recovery therapy.  In a sense, this letter is a long-winded way of saying, "No," which is the main lesson we learn in recovery when we have a history of being abused.  Actually, just writing the letter without  even sending it has already been helpful to my emotional state and self-esteem.  I'm proud of myself Hugging

    The email:

    Hello [her name],

    Intro
    I am writing because I would like to understand my experience of last week’s [Autistic Adult Group] meeting. I would first like to share my appreciation for your concern and work to help the general population understand autistic people better. It means a lot to me that there are people working hard to help autistic and neurotypical people relate, which ultimately helps everyone involved. I also appreciate that you came to our group to collect information directly from us rather than seeking the information second-hand. Secondly, I want to be clear that I am attempting to be as respectful as possible with this email. I mean no animosity nor critique. I solely want to understand to get a better sense of how I perceive and navigate social interactions as I have just recently (three months ago) learned ago that I am autistic. To address this, I will only state facts, my personal internal experience, ask a few questions, and open it up for discussion. So, I hope that we can take this opportunity to help each other out since this email could provide information on how at least one autistic person perceives social interactions.

    Facts
    At the group meeting, you asked us for experiences with masking. I shared my experience, and felt dismissed because you didn’t really engage in my comments nor asked to elaborate. The focus of the group was on other group members, asking them specifically by name to elaborate. This portion of the group lasted for about 30 mins, in which I was able to contribute a unique perspective for maybe 1 min max. You also asked for interviews so that you could obtain direct quotes from us for your presentation. I was excited to provide input in a dyadic setting allowing me to freely share without interruptions or distractions that are not available in a group setting. At this point, I posted in the chat that I would be happy to be interviewed. You did not accept nor decline my offer. Finally, you gave out your email so that we could contact you to share our interest in an interview because your enthusiasm for hearing our experiences exceeded the group setting’s limitations. I emailed you sharing that I would like to be interviewed to discuss masking. I did not receive a response to this email as well. Thus, from my experience, someone asked me for support with their work three times, yet despite three attempts to engage in the request, my attempts were dismissed. I would like to acknowledge that sometimes my episodic memory can be incorrect as I become anxious in social settings, especially when meeting new people. If I stated anything above that was incorrect, please let me know how you remember it so that we could work with the same facts.

    Personal Experience
    I felt dismissed due to the lack of acknowledgment for my attempts to support your work and a matter that is deeply important to me during a setting established specifically to support said matter. In my experience, formalities in professional settings encourage individuals to acknowledge and respond to offers for support, especially when they are requested. I want to specifically point out that I am referring to the acknowledgment of an offer, not the acceptance of an offer. I believe that it is entirely within norms to decline an offer. In fact, I believe it is a healthy boundary if someone declines an offer they do not wish to accept.  A simple, "No, thank you.  I have what I need." would be appreciated.  As a side note, I congratulate people when they place a boundary with me because not only does it help the relationship, but I’m also proud of them for establishing their limits.  I love when people say, "No." Moving on, I also understand that individuals that want to support another person’s work would feel seen and respected if their attempts are acknowledged. Accordingly, if someone's prompted offer to help goes unacknowledged, they feel unseen and inconsequential. If you believe I am misunderstanding professional formalities or how people generally react to being acknowledged, please let me know.

    Furthermore, being autistic has lead to a lot of social difficulties in my life, to include being dismissed, blamed and accused of intentions that were completely incorrect. As such, I have experienced significant hardships, so this topic is of deep interest to me, which affects me even more so that if we would have been discussing something less significant to me and the group as a whole. Overall, the experience has left me confused wondering if I did/said something insulting or if the forum is a safe place to be openly autistic. Lastly, it has affected my attitude towards the group and organization as a whole to the point that after sharing my experience and intentions with a friend (“I tried to participate, but it didn’t really seem like anyone was interested. I was just there.”), they had to convince me to continue attending the regular forum. At the same time, I have had a great experience with my ASD specialist, [my ASD specialist’s name], thus far, so I’m hopeful that this whole thing is just a misunderstanding that you could warmly clarify.

    Questions
    As stated above, I would like to better understand the experience to ensure that I am not misinterpreting what occurred, so I have a few questions:

    1) Did I say or do anything that was offensive or rude which would cause someone to avoid engaging with me? If I did, given the setting and purpose of the group, I expect that a person whose role is to help autistic individuals would bring attention to it so that the autistic person could address it, improve their social interactions, and have the ability to contribute to the main matter.  A simple, "When you said/did [whatever] made me feel [however]," would have been enough for me to quickly address and move on.  Is this expectation of mine inappropriate for the setting?

    2) Is there something about me that makes others believe that my contributions are not valid nor valuable?

    3) Am I misunderstanding professional formalities where acknowledging a person’s multiple offers to support is expected?

    4) Is there something else that I have not discussed that I may be missing, or anything else that you would like to address?

    Again, the purpose of this email is solely to learn from the interaction so I could better navigate the world as I am currently confused on how to understand what happened.

    Respectfully,

    [My name]

  • It's a good first attempt but it needs to be about half the length. Neurotypicals can lack attention span. She's very likely to 'skim read' that letter and not get what you are talking about.

    Some points

    • Often the more you labour that you are being respectful the less respectful people feel you actually are.
    • Try and express your 3 main points in one or 2 paragraphs at the start before elaborating. A kind of 'pre summery' of what you will say.
    • I would say your 3 main points are:
      1. On 3 different occasions she asked for input on masking in autism which you offered and she seemed to ignore you.
      2. When she ignored you she did so in a dismissive way with out acknowledging your voice or explaining why she didn't need / want your input.
      3. You would like her to explain exactly why she thinks your point of view is not a needed contribution to the conversation around masking.
    • There is no need to write whole sentences explaining that your memory is imperfect or that you are stating things from your point of view. You can meaning preface sentences with expressions like "as well as I can remember" or "from my point of view." The same thing probably applies to being respectful.
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  • It's a good first attempt but it needs to be about half the length. Neurotypicals can lack attention span. She's very likely to 'skim read' that letter and not get what you are talking about.

    Some points

    • Often the more you labour that you are being respectful the less respectful people feel you actually are.
    • Try and express your 3 main points in one or 2 paragraphs at the start before elaborating. A kind of 'pre summery' of what you will say.
    • I would say your 3 main points are:
      1. On 3 different occasions she asked for input on masking in autism which you offered and she seemed to ignore you.
      2. When she ignored you she did so in a dismissive way with out acknowledging your voice or explaining why she didn't need / want your input.
      3. You would like her to explain exactly why she thinks your point of view is not a needed contribution to the conversation around masking.
    • There is no need to write whole sentences explaining that your memory is imperfect or that you are stating things from your point of view. You can meaning preface sentences with expressions like "as well as I can remember" or "from my point of view." The same thing probably applies to being respectful.
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