Sharing: Wrong Model, Wrong Research

This is an incredibly insightful post that I think is absolutely spot-on.  While I’m a self-confessed research addict, I do find it disturbing that researchers continue to approach the Asperger’s/autism spectrum from an exclusively pathological point of view, based on their own historically egocentric observations, without so much as asking us for any part of our perspective at any time.  Thus, much of the research remains stubbornly aimed at finding causes, correlations, and cures.  The first two do little to nothing to improve the lives of anyone already in existence, and the third would only be useful to a small subset of the spectrum community.  NONE do anything to actually increase the enlightenment or understanding between the two neurotypes, especially of the neurotypical community, of the spectrum community (i.e., no advances have been made by the scientific community to solve the issue of Asperger’s/autistic people being continually misunderstood by the majority of the neurotypical population).  This is such a slamming-awesome post 🙂 ❤

(I’ll add header images and tags and stuff a little later, after work) 🙂

Eclectic Autistic

I was going to write a long, detailed post directed at MIT about their announcement of a new Center for Autism Research, which will be focused on lifting the “burden” of autism and developing “methods to better detect and potentially prevent autism spectrum disorders entirely.”

I was going to talk about how, scientifically, any approach to a complex problem requires using the correct model, and explain that I think they’re using the wrong model of autism — a pathology model rather than a neurodiversity model. I was going to pull quotes from articles about this new center (as well as the existing autism research going on at MIT, which is already along the same lines) and contrast them with quotes from MIT’s president about inclusion and respect for students of all backgrounds.

But I’m just tired of it all.

I understand that our whole society pathologizes difference: there are…

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24 Comments

  1. ive heard that being female presents some challenges in terms of being hired, treated equally, increased risks of breast cancer and assault, and various other impairments.

    there are treatments and surgeries that can relieve women of many of these burdens, but it will ultimately require a more advanced society to fully accept those who opt for the treatments. and yet, we are learning that we should leave those decisions up to the woman– rather than make the decision for her earlier on, as we once did.

    might we skip the whole step on deciding who will and wont be born with asd, and look for ways that society can offer that as a choice, too? or should we simply relieve women of all burdens of femininity– by only carrying males to term (in test tubes and artificial wombs, but of course) or by treating the fetus so that it will not risk being born with y-chromosome deficiency?

    im sure with enough research, we can make certain that no one is born without both of the (necessary) chromosomes. lets have m.i.t. get right on that. :/

    Liked by 1 person

    1. Lol Fig 😊 I took that as tongue-in-cheek (hope I got it right), and I also took it for the truth that it is 😘 Wouldn’t it be nice if the research community was simply less biased? Whether it’s the autism spectrum or females, both get written off in varyingly subtle ways, especially in the scientific/medical fields. Research is slowly becoming more gender-neutral (thank goodness!) (except for the psychology/psychiatry branches, that is), but the medical practice/clinical part itself has a long-ass way to go 💓💙

      Liked by 1 person

            1. Oh shit, I meant a smiley 😊. Just beware the devilish grin 😈 – that’s when one should worry lol 😂💓

              Liked by 1 person

  2. I am a commercial litigation paralegal, so research is a part of my days, too. There are never enough hours for it, either, huh?

    I like your comment on this area of research and both of you are spot on. I feel like many of the areas addressed in that cold, clinical manner should have an infusion of humanity, of compassion. People would respond to that so much better and where there is human kindness, well, it’s easier to teach, more palatable to read, and so much more interesting all around. I truly believe everyone involved in the research (the “subjects” *ouch!*, the recipients, the researchers themselves) are better served with a bit more humanity and compassion.

    thanks for your thoughts on this and for reposting this. I will def read it!

    Liked by 2 people

    1. Thank you for commenting! Agreed, completely! 👏🏼👏🏼. I especially how you describe the cold, clinical aspect; that’s another change that’s due to be made. ❤️ Wow, paralegal? Sweet! 😊

      Yeah, Eclectic Autistic is an excellent writer; the whole blog is great! I highly recommend it 👍🏽💖

      Liked by 1 person

  3. Hi – I love reading your posts. As the mother of an 11-year old boy with Asperger’s, I gain so much from reading about your experiences and perspectives.
    I wonder if you have seen/read anything by Tony Attwood or Sue Larkey? (Both residing in Australia, although Tony is British.) They do amazing stuff. Sue is primarily focused on education and her website, Facebook page and conferences centre around having teachers (and parents) understand Autism and Asperger’s and strategies to help. Tony’s primary focus is on the wider community and engendering understanding of what it means to have Asperger’s and Autism. (I put Asperger’s first this time because that is his focus.) Tony’s explanations of what it feels like to have Asperger’s is down to earth, sensitive and amazingly easy to understand. Then .. there is Temple Grandin (but I am guessing you know who she is.)

    Liked by 3 people

    1. Hi! Thank you so much for commenting! 😊 I’m really enjoying your blog as well! ❤️

      Oh yeah – Temple Grandin is one of my favorites, as are Liane Halliday Willey, Samantha Craft, and Rudy Simone 💞 I’ve also read Tania Marshall and I think she’s awesome, but her stuff is more oriented toward girls (same with the others); funny you should ask about Tony Attwood 😉 because I’m actually reading his “Complete Guide To Asperger’s” right now (!) 😊 Really enjoying it, too – thank you so much for mentioning him! His book is excellent, and I don’t find it to be too dated, either ❤️ “Neurotribes” by Steve Silberman is also a fascinating and excellent read, if you haven’t already; highly recommended! 💜

      Like

  4. I don’t really have much to object to here, other than to commend you for slightly altering your wording on the cure issue as of recently (from “such research benefits no one” to “there is a small percentage that would benefit”).

    I’ve gotten into it with neurodiversity advocates time and time again about why I am one of that percentage that would prefer to be cured and I’m always crapped upon for that. In that light, I don’t think researching autism as a pathology is completely useless.

    Perhaps the best model would combine the relative strengths of both models while dismissing their weaknesses.

    Liked by 2 people

    1. I think it sucks that you get crapped on for that. I don’t understand. Just because I don’t want to be cured doesn’t mean that I have the right to speak that way for someone else. Although the percentage is small, it exists, and y’all should have just as much right to speak your mind as anyone else. It might be an “unpopular” opinion, but that doesn’t make it an invalid one. The same people who crap on you for yours should have to walk a mile in your shoes first, before they try to speak for everyone. ❤️💜

      Like

  5. “lifting the “burden” of autism and developing “methods to better detect and potentially prevent autism spectrum disorders entirely.”

    One of the perks of being an autistic male, is finding the needle before seeing the haystack. Adding that to my substantial debating experience, where finding THAT vulnerable spot to sink the other with one well placed torpedo, is essential, I have found myself deeply disturbed by the above statement, which if it does indeed come from around the MIT, it might usher in the apocalyptic thought of an MIT machinery which would detect ASD, which actually means individuals on the spectrum, and “preventing” them, which means WTF? And I am really sorry if someone may have misread What The Fudge for something else😇
    But what are we talking about? Preventing ASD? How exactly? Are we looking for a cure, again? Did the MIT got any of the memos about the genetic biology of ASD? “Entirely”? How? Eugenics, again?
    I don’t want to become graphic out of respect, but again WTF?
    “Burden”?
    This is how the holocaust started, and this time I’ve got no plans to travel cattle class and take a last “shower”…
    I’m Autistic and Jewish and this time I’m planning to join the Inglorious Basterds.
    I’m really shocked and deeply disturbed…

    Liked by 1 person

    1. Exactly 👏🏼👏🏼👏🏼😊. If you haven’t seen them already, there are several other posts about this topic that you might be interested in! 😊. Just click on the MIT tag at the bottom of the post, and it’ll show you the rest; I think you’ll enjoy them! 😇

      Hehe a lot of us biological females are very much needle-before-haystack, too ❤️. My body might be female, but my brain is definitely androgynous, with a definite male tendency 😉💙💜

      (For the record, it’s ok with me if you use WTF; hell, I’ve even dropped a few full-fledged F-bombs in my posts lol) 😉💞

      Liked by 1 person

      1. I’d rather not go there for now, as my well behaved aggression shows up…
        And it can be quite nasty. Does well to win an argument, but leaves deep trenches in the opponent, unless they’re borderline, and the trenches end up in me 🤓
        Thank you for the F licence, I shan’t use it lightly 🤣

        Liked by 1 person

  6. I just checked out their website, and gave them feedback. While their website allows autistic people to sign themselves up for research, the lab is very backward thinking. They only give male or female as gender options, and it’s a mandatory field. That says it all.

    Liked by 1 person

    1. Oh my! That *does* say it all 😞. Thank you so much for your efforts and information! ❤️. Very interesting. 🌷🌷

      Like

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