Why I “interfere”

I recently read an article by an autism parent blogger who railed against autistic advocates and asked how we dared “interfere” with his parenting by protesting ABA or telling our experiences or questioning the cure narrative. I don’t want to link to that article because the person in question has shown that he has no intention of listening to an autistic person about things, and because I don’t want to invite a hoarde of anti-neurodiversity zealots to my blog. But I thought the question itself deserved explanation, so I figured I’d write something about it.

I interfere, sir, because I grew up undiagnosed. Because my parents, despite their best efforts, made mistakes in raising a child with disabilities. Because my experiences of occupational therapy and remedial training on certain skills ranged from completely useless to downright traumatic. Because I learned the most useful skills from my autistic friends, not from any social skills class or occupational therapy. Because I know I had it relatively easy compared to my peers who were diagnosed in early childhood. Because I don’t want your son to experience what I did.

I interfere because I think you, and people like you, will benefit from hearing the perspective of the receiving end of those therapies and treatments. Because I think you should know red flags of abusive treatments. Because I think that you should be thinking about risks versus benefits, and what kinds of “benefits” are benefits you actually want, and what kinds of risks you’re willing to tolerate for what kinds of benefits.

I interfere because, for me, hand-over-hand (I would like to draw a line at this point between “helping someone, with their consent, to move their hand/body through a motion so they get the feel for it,” and “hand-over-hand” as used in my therapy, which was always “grab the kid, forcibly restrain them, and then force their body to do what you want it to do, when they are actively not consenting or willing, and when they have no idea what is happening or why.” The first is something that I will do, always with consent, with kinesthetic learners. The second is something that was done to me, and it was called hand-over-hand) was uniformly traumatic. It hurt, it took away my autonomy, it was frightening, it made me helpless. I screamed and cried during hand-over-hand, not because I was being willful or defiant as my parents and teachers and therapists thought, but because I was terrified and hurting. And my parents, my teachers, my therapists – they were the ones causing the terror and pain. And they thought they were helping, but they weren’t. I interfere because what I learned from hand-over-hand was not how to do the skills they were trying to teach properly (I am 27 and I still can’t write my name in cursive or sew a button or etc, obviously their occupational therapy to try to teach me cursive and other fine-motor skills failed abysmally), but rather that my pain didn’t matter, that my fear didn’t matter, that my body was not mine, and that might makes right.

I interfere because  I remember being helpless and in others’ control, at their mercy. I remember being thought of as willful or defiant or non-compliant or bratty when I was actually scared or in pain or exhausted or just bored to literal tears after hours of monotonous tedium. I remember what it felt like to be locked in an isolation room when I couldn’t do something to others’ satisfaction. I remember what it felt like when my parents flat-out refused to believe or investigate teacher abuse of me (they refused to believe for 14 years, when a classmate of mine told them stories about what she would do to me. And then they blamed me for not telling them, just as they’d blamed me at the time for “making” her abuse me). I remember too well what it felt like when my parents accepted others’ characterizations of me as lazy, or careless, or just not wanting to succeed. I remember too well what it felt like when I was scapegoated for anything that went wrong in an interpersonal situation. And I remember too well what it felt like when other people thought it would be easier to try to restrain and yell and scream and hand-over-hand my disabilities out of me than accommodate them and create an environment in which I could thrive.

I don’t want to call all the shots in your parent-child relationship. I want you to listen to those with relevant experiences- to me, to other autistic people, etc – and to think about what you’re doing. I want you to think about the potential consequences, about what’s best for your kid, and what is a true deal-breaker for you. I want your generation to avoid making the same mistakes with your kids that my parents’ generation made with me. I want you to learn from their mistakes without having to repeat them yourself, and to make the best possible decisions for your kid. And that’s why I “interfere.”

9 thoughts on “Why I “interfere”

  1. Patrick Coffey says:

    I apologize for this comment. It has nothing to do with this particular post, but I find your blog both interesting and well written, and I just signed up to follow it. I am working on a piece on asthma; I tried to contact you directly but was unable to find an email.

    I suspect the identifier “ischemgeek” is based on an interest in chemistry. I’m the author of a history of chemistr, “Cathedrals of Science,” http://www.amazon.com/gp/product/0195321340/ref=s9_simh_bw_p14_i1?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-4&pf_rd_r=143JHGS1K311C60346H4&pf_rd_t=101&pf_rd_p=41171042&pf_rd_i=283155.

    Hope to hear from you
    Patrick Coffey

    • ischemgeek says:

      I keep my email off here to control spam. You can contact me at ischemgeek AT gmail DOT com. Also, yeah, I’m a chemistry geek, particularly with regard to materials chemistry, but I don’t talk about it much here because a lot of what I do is covered by strict NDAs that I don’t want to even bring my toes close to the line of.

  2. Yes. Just — yes.
    BTW I wanted to follow by email but couldn’t figure out how myself…

    • ischemgeek says:

      I’m not sure how. I will see if I can figure out how to set up an RSS feed tomorrow for you.

      • Yay! Not sure what that is but yay!

      • ischemgeek says:

        Okay, on the left-hand side-bar, there should now be a follow button where you can follow by email, and an RSS feed. If you have the appropriate web browser plugin, you should be able to subscribe to the RSS, but regardless you should be able to follow by email by clicking the follow button, I think? Give it a try and let me know if I need to go back and fiddle some more.

  3. It seems only for wordpress 😦 – will try to check in though – really appreciate your work.

    • ischemgeek says:

      Hm. Okay. I’ll see what I can do for email subscriptions… Hm. I don’t know how Blogspot works so I’m not sure how to make up a subscription thing through there. I think there are some widgets I can download to enable an email subscription, I’ll have to figure it out. I’m not very CS-y so it’lll probably take me a few days (give me a scientific instrument with a hardware problem and I can figure it out in a few hours, but software stuff is tricky, mainly cuz I don’t have the necessary knowledge base.

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