Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Tuesday, June 14, 2016

Alyssa Reads Uniquely Human: Part 9

Still reading Uniquely Human. Please let it be over soon. (This is chapter 8. There are 12 chapters. I get to The Real Experts chapter after this.) The prior post in the series can be found here, and the series begins here.

Here I say that you are flat wrong, Dr. Prizant: "All parents aim to be the best providers, the most understanding caregivers, and the greatest supports for their children." (157). No. You are wrong. Plenty of parents see their children as accessories or extensions of themselves, and plenty of parents draw on their children for support rather than the other way around or even the give and take that could be appropriate as a child gets older. Don't pretend that all parents are trying to be the best for their children. Trying to appear the best to outsiders is not the same thing. Autistic adults can tell you all about the martyr parent trope, because it's a thing, and wanting to get as much attention as possible for the extremes your kid reaches is a thing whether or not the parent cares if the kids extreme was good or bad. Plus the general issues re: child abuse and erasure that aren't specific to disability. Stoppit.

Now, a parent turning to this book probably is trying to be all those things. Doesn't make this an OK statement.

I won't argue with the statement that "it can be more difficult for a parent to attend to a child's needs when the child is difficult to read" (158). I will point out that that's not, strictly speaking, an autism thing. Autistic parents often have more trouble reading their neurotypical children and less trouble reading their autistic children. Neurotypical parents often have more trouble reading their autistic children and less trouble reading their neurotypical children. That's, at least partially, a cross-neurotype issue, similar to a cross-cultural issue.

I actually do agree that community can be useful for parents, because community can be useful for basically everyone. I think parents need to be very careful what kinds of communities they seek, because martyrhood seems to be contagious and so does dangerous quackery. I'm not convinced I'm cool with a half-full vs. half-empty metaphor with autism, though if you wanted to tell me my cup is filled with a different beverage... (please not carbonated, please not carbonated...)

I am definitely not cool with the primary problem presented re: "direst prognoses: what the child will never do or accomplish." The presented problem is that it's not tender and that it can affect perceptions of the kid. The frankly bigger problem? We're talking about what a child will supposedly never be able to do based on their abilities in childhood, when we already know for a fact they're disabled in a way that means atypical developmental trajectories are a thing. As in, predicting what an autistic kid will never be able to do works even less well than predicting what a neurotypical child of the same age will never be able to do. It's flat wrong. (Autistic development is a thing!)

From the story given for "Insist on Respect" I think primarily he's saying it's important to respect the parents. And when it comes to parents who really are trying for the best interests of the kid? Sure. What about respecting the autistic person? Seriously, the ways these stories are shared (and with enough info that one of my commenters has figured likely real names for quite a few, since the first names don't seem to be changed...) is not consistently respecting the privacy and dignity of the people being written about. I don't care that the parents think trying to pee in the display toilet is a funny story, I care what the kid thinks of it being shared. (This one hasn't got a name attached, thankfully.) Like, yes, these parents are saying they want to be respected as parents and that they want their children to be respected, but just like I don't trust professionals as far as I can throw them, I don't trust parents of autistic kids to trust what is and isn't respectful of those kids as far as I can throw them. Not while they're making public the stories and videos that they do.

OH FOR PETE'S SAKE. WHY ARE YOU CONFLATING TANTRUM AND MELTDOWN. You should know better. You should know better. You should really know better stop stop stop. Also, talk about listing "deficit" behaviors that a parent gets to stop through, apparently theater? I thought you said you didn't think we should describe autism as a list of deficit behaviors? Follow you own logic.

Also I gotta say I mistrust folks following the "gratification and inspiration that comes from helping others." (172). Inspiration porn is a thing. Also, the state director for Best Buddies was all inspirational and such, and she was also the most condescending of anyone I ever interacted with by typing in person. And special education teachers? There are reasons that I don't trust currently practicing special educators, including the fact that they seem to think acting "less autistic" is a good goal. Come to think of it, that's the same reason I don't trust clinicians, including Dr. Prizant, who despite a lot of nice words on top, is totally still writing about "emerging" and reducing scripts and other things that are at best, code for acting less autistic rather than saying it straight out.


Part 10 here!

4 comments:

  1. This is the bit where I sort of get excited and guarded at the same time because Prizant is coming to Sydney as part of the Asia Pacific Autism Conference in 2017. I literally just found this out...

    [two of our not favourite orgs are sponsoring said conference].

    "[...]and plenty of parents draw on their children for support rather than the other way around or even the give and take that could be appropriate as a child gets older."

    Yes! For the "drawing on support from a kid example" I think of Freida Fromm-Reichmann when she was a little girl and how her mother drew on that child's support. Daniel Mackler writes about this in TO REDEEM ONE PERSON - the book review.

    And I remember Paula Durbin-W wrote about the give and take of parenting and how London at 6 years old was unfairly expected to give and give and give because his mother wasn't receiving feedback. [She has a new website now celebrating her 10 years in advocacy].

    And if we are supposed to search in the index for case studies...

    Dibs' Mum was a lot like this as well. Not precisely the martyr mode. And she hid everything from people she was supposed to be intimate or informative with like Virginia Axline. There is that big revelatory moment in the middle of SEARCH FOR SELF.

    "[...]I will point out that that's not, strictly speaking, an autism thing. Autistic parents often have more trouble reading their neurotypical children and less trouble reading their autistic children. Neurotypical parents often have more trouble reading their autistic children and less trouble reading their neurotypical children. That's, at least partially, a cross-neurotype issue, similar to a cross-cultural issue."

    The Respectfully Connected families seem to read their people really well because of these cross-cultural issues.

    See: sociology; anthropology; immigration; multiculturalism; globalisation and the American Psychological Association groups which cover these.

    "I actually do agree that community can be useful for parents, because community can be useful for basically everyone. I think parents need to be very careful what kinds of communities they seek, because martyrhood seems to be contagious and so does dangerous quackery. I'm not convinced I'm cool with a half-full vs. half-empty metaphor with autism, though if you wanted to tell me my cup is filled with a different beverage... (please not carbonated, please not carbonated...)"

    And I am seeing a watched boiling steaming pot here. The sort that has Stone Soup in it.

    I am glad the pissing kid's name was not revealed. (There are things I have done in display halls and houses which are functionally similar?) It was only the cartoonist whose name the commenter figured out and because they were known in another capacity and covered in the national/international press.

    "Not tender". Reminds me of somebody.

    The theatre thing is common and current. Just saw something in India - there is a 2017 online course run by an Indian doctoral person who teaches autistic people with masks.

    I could stand to be less trusting with current and future special education people even if they do do their job in an orthogonal way. You never quite know what they will do with whom. On the grounds that we haven't that control, unless control of information.

    There are very few things that Autistics will never be able to do; they're not the things you are expecting and hard limits may not be hard. However there are lots of soft ones.

    And Prizant is talking in code again.

    "Best providers" at what? "Caregivers" and "supports" ... are not ... parenting ... words.

    And rewrite that sentence with "all"; "best"; "greatest" and "most understanding" removed. The "nice words [are] on top". Dirt on my shoes is still dirt. Dirt which was once on my shoes and is now on the mat [or the chairs or the grass or the stool]...

    ReplyDelete
  2. As for appearing to want the best for kids when really they just want to make themselves look good, special ed schools do that, and parents of only NEUROTYPICAL children do that. If white, middle-class, Christian parents who have no neurodivergent children and are therefore the most societally privileged people across the board as well as their kids can do that (like is mentioned on Homeschoolers Anonymous, which is pro-nurodiversity, btw) , imagine how easy it is if their children are autistic and less privileged than they in a way that directly allows them to gain points. Is it any wonder "autism parents" can be so gross when it comes to expecting kids to support them. It's not only those whose autistic kids are diagnosed, either; one of my old school friends (a white boy) was as autistic as I was but with a different personality, and, while he was diagnosed with ADHD (which it is unlikely he had, given that he tended to have good grades, no trouble sitting still, and no apparent problem focusing; if he had ADHD, it was VERY well treated), his parents appeared to be controlling in a number of ways; for instance, even though he and I never dated, they forbade him to treat me to lunch - an old-fashioned idea. Additionally, when he bumped into our family years later at a chance meeting, he talked about his work experience with the air of a compliance-trained puppy, like "I'm being good, am I, am I, am I?"
    I used the above animal comparison because I have petted hundreds of dogs and his air when talking about his work experiences reminded me of that. This makes me believe that he might have been intensively compliance trained; for all I know, he was diagnosed with autism and lost his diagnosis due to ABA, which is a shame because the autism was as plain as the nose on his face.
    Shame on those parents and teachers who use the kids they after to make themselves look good! Shame on them!

    ReplyDelete
    Replies
    1. Lucy:

      Homeschoolers Anonymous [are they the Homeschoolers Anonymous Reaching Out who write the blog?] - they had a really good autism series this last month or two.

      Isobel. 25 April 2016
      Katia 23 April 2016
      One thing I noticed is that the girls were very positive about their homeschooling experiences. Especially when there weren't many other options or the ones which were there didn't work.
      Shade suffocated. 22 April 2016
      Olive's Story. It wasn't their fault
      And Persephone is 13 and being schooled at the moment. She has big dreams of being on Broadway and took art classes recently. She recommends having a friend who is homeschooled too and going outside to learn.

      Next Homeschoolers Anonymous series is "Political Families".

      No, no wonder, that autism parents can be so gross.

      "Less privileged than they in a way that directly allows them to gain points".

      Were they afraid that you were exploiting him because of the personality differences they saw? Had he had his lunch money stolen in the past? or was he not allowed to socialise outside of classes?

      The compliance-trained-puppy-effect.

      "Of course you're good. You're still in our lives" or something that reassures of continued affection apart from this experience.

      I am not a petter of dogs [not even the two small ones next door]. I do talk to cats.

      "he lost his diagnosis due to ABA". That is plain indeed.

      So I am one who checks her privifridge. [which is a combination of privilege and fridge which I made up when I was watching a documentary on a Syrian town which was the first to defeat Da'esh].

      The kids they "alter", Lucy?

      Shame and more shame.

      Independence Chick and Galactic Explorer write about this "appearing to look good too".

      Great post about expressing everything by Independence Chick
      Galactic Explorer was once a Sheltered Evangelical

      Delete
  3. "I won't argue with the statement that "it can be more difficult for a parent to attend to a child's needs when the child is difficult to read" (158). I will point out that that's not, strictly speaking, an autism thing. Autistic parents often have more trouble reading their neurotypical children and less trouble reading their autistic children. Neurotypical parents often have more trouble reading their autistic children and less trouble reading their neurotypical children. That's, at least partially, a cross-neurotype issue, similar to a cross-cultural issue."

    It also seems to be a cross-hearing-status issue. Studies have found less effective joint attention between Deaf toddlers and hearing parents, and hearing toddlers and Deaf parents, as opposed to families where the toddler and parent have similar hearing function.

    ReplyDelete

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