So I Attended An “Autism Parent Meeting”

And I’ve been struggling greatly ever since in pretty much every sense of the word “struggling.” I’d read and heard enough to know that the meeting wouldn’t be a good place for me, but I wanted to see for myself.

I attended legitimately as a parent of an Autistic child and chose not to disclose that I’m Autistic because it didn’t seem like a good idea at all.

TW: ableism, discussion of filicide, brief mentions of eugenics, ABA, etc.

This post was read aloud by Alex Kronstein on episode 30 of the NeurodiveCast.

The lack of compassion and understanding for Autistic children was quite overwhelming to be around in person. It wasn’t even halfway through the first hour before one mother made a “joke” about school needing to start soon so her child “could continue living.”

Yes, gallows humor, sure. Except that THIS HAPPENS! Parents murder their Autistic children. Then the parents get the sympathy and empathy and are excused because “well, their child ‘had autism’ so it was hard for them.”

Well, fuck that.

Yes, parenting is difficult. Parenting any child of any neurology is difficult.

As Shannon Des Roches Rosa says in the last link:

[We] signed up for this parenting gig, we chose to be mothers — and that choice came with no warranty, and no guarantees.

Murder of disabled children should NOT be excused or minimized! Especially not using the reason that “parenting is difficult.” It’s not okay to joke about potentially murdering a disabled child in a room full of strangers who may also be barely coping with parenting in a society that doesn’t support parents and really, really doesn’t support Autistic children!

Joking about and excusing those sorts of thoughts and desires (especially in a public forum) is partly how murdering Autistic children becomes more normalized and “understandable” in our society. Statements like: “You don’t walk in our shoes, you can’t understand, your child must not be as ‘severe’ so you just don’t know” help normalize it too.

None of those things are support. They aren’t even parental support. Having horrible thoughts about one’s child can sometimes happen in a moment of frustration, yes, but putting voice to it? In a room full of other struggling parents of vulnerable children? I cannot even fathom it!

I could imagine saying something like, “I’m struggling with these thoughts and feelings and need support to let them go and support my child in the best way possible. Does anyone have advice?” because THAT would be seeking support as opposed to making offhanded remarks about, “Haha, if my child doesn’t go to school soon then I’ll probably murder them.”

Sure, maybe that exact mother would never murder her child, but there are so many others who do and can use the words of others to bolster their own frustration and justify their actions. I could be here all day linking to stories and posts and articles, but I’m exhausted. I’m done for now with that topic despite the fact that there were several other parents, including the group leader, who eventually jumped on the, “Thank goodness for school or there’d be so much more murder, physical abuse, and parents ending up in jail” idea.

There was also so much talk about genetic testing and how wonderful it is that there’s a database they can contribute DNA to so researchers can find the “cause” of autism. Much fearmongering about how the “incidence is rising.” Heaven forbid there be more of us.

There wasn’t much ABA therapy talk, thank goodness, although the parenting advice tended very heavily towards punitive behaviorism. They want to change their Autistic children to fit the world, which breaks us, instead of helping the world support us so that we can function reasonably well.

There wasn’t really any move towards trying to better understand their children or where they were coming from.

The most concerning thing to me was how well-meaning they all seemed to be. I probably could write a whole post about how dangerous “well-meaning” can be. They all think that they’re doing the right thing and that the group is providing some amazing support.

Meanwhile, I’m over here needing weeks to recover from attending just one meeting as I continue to actively fear for their children’s lives and well-being.

Other posts about the parent meeting:

The Autism Parent Group Library

Autism Parent Meeting – Tragedy, Mourning, and Divorce

Post about allistic societal expectations and parenting Autistic children:

Societal and Parental Expectations

12 thoughts on “So I Attended An “Autism Parent Meeting”

  1. I know how you feel. If you weren’t on board with Jenny McCarthy and Autism Speaks, you were OUT. I was contacted by the group to let me know they had been e-mailing me behind my back to see if they could dump me. This was in 2007. My mom and I attended and contributed. We have been called “Dorito Eaters” by NT moms whom I’m sure would be crushed if someone called their autistic child those words at any age. Due to my own neurology, I don’t want kids, but I sure appreciate any parent who loves, values and stands behind their kids. Fortunately, mine both did for as long as they lived.

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    1. Oh wow. That’s horrible! I don’t know that I’ll go back. Too exhausting and depressing. Especially since I can put my energy towards directly supporting actually Autistic folks locally instead. More effective and easier on me too.

      My main worry at the moment is that I can’t recognize any of them (because of my faceblindness), but they can probably recognize me and I don’t want to have to talk with any of them unexpectedly. That possibility just occurred to me today (you’d think I’d be used to the fact that other people recognize faces by now, but I’m really not – it’s so unfathomable to me).

      I’m so glad that you had good support from your parents! ❤ That's so important. I'm not sure how knowing sooner about being Autistic may have affected my decision to have children…. but I can definitely understand not wanting to have the responsibility and extra/overwhelming sensory aspects of parenthood. It's a lot.

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  2. I had to leave our local support group. I do believe every parent there loves their child and is trying to do their best for them, but I could no longer withhold judgement about some of the horrible “treatments” and nonsensical ideas they espouse.

    Liked by 1 person

    1. Thank you for commenting and sharing your experience! ❤ I don't think that our experiences at these groups are unusual at all.

      It was very difficult to keep my mouth shut 😦 Maybe I should've spoken up, but I really wanted to observe them without influencing them too much during that meeting. Also to assess for myself how able I might be to speak up at future meetings. I doubt I'll be able to go back.

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  3. I’m just wondering if you ever did go back?

    I have also left places (churches, playgroups etc) that are toxic & exhausting. It used to leave me tearful and upset. However, I now have a zero tolerance/zero regret stance to these places.

    My children are not hitters or biters or bullies. If a child was strapped in a stroller and left to cry to sleep they would be the only children to go over & see that the baby was ok. And yet people make comments about autistic children not having empathy, and having relationships only with “things” and not people.

    The same people who thought my children were “exceptional” (in a good way) were also the ones who hissed at my children and said nasty things such as “I wanted to slap her face” if they were annoyed with ME.

    I don’t know why I bothered trying to fit there – I gave too much benefit of the doubt to people who in no way deserved it. And I hope you managed to preserve your energies for the people who actually matter, too.

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    1. No, I have not ever tried to go back. I’ve thought about it, but the friends who went with me previously are now ex-friends and it was such a horrible experience that I don’t think I could manage doing that on my own.

      Besides, as you led up to in your comment, it’s much more important for me to save energy for those who want to be better and want to learn! I don’t have a lot of extra time and energy so I’m done wasting it on people who don’t appreciate it anyhow 🙂

      I too am very reluctant to return to places like that. I’ve only returned maybe three times in my entire life. Once was a grocery store where the lady who caused the issue was fired so I finally ventured back there months later. Another was my gym, where I had a minor (but very upsetting) misspeaking episode which would’ve meant never returning when I was younger (this was when I was nearly mid-30s), but I managed to go back! And the third time was two weeks ago when I went back to my therapist after a horrible experience, but I figured out why it was awful (it was because Counterpart was speaking NT to her and she was speaking it back to him and it was triggering to me so I shut down).

      Those three times, it was worth it to go back! They were also all three within the last 1-2 years. I’ve not regretted never going back to any of the other places.

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