Macro Lenses: Nitpicking in the Autism Community

macro

A macro lens

Fact:  According to the FDA’s “Food Action Defect Levels”, up to 30 “insect fragments” are allowed per 100g of peanut butter.  Since my favorite brand of honey roasted creamy peanut butter is 794g, this means that close to 240 insect fragments are legally acceptable in my current jar of peanut butter and “pose no inherent hazard to [my] health”.

peanut butterAs shocking as this factoid may be to those with delicate constitutions, I confess I’m not really worried about it.  I have, after all, watched Andrew Zimmern ingest a lot of gross stuff that is apparently quite nutritious.  Since my peanut butter has been pureed to death, I don’t actually have to see any insect fragments.  So, I like to pretend they aren’t there.  Why?  Well, it’s simple really.  I love peanut butter.  Peanut butter fudge.  Those creamy Sam’s Choice peanut butter cups at Wal-Mart.  Envisioning a world without peanut butter makes me feel deprived.  Since the world must accommodate both people and insects, I have arrived at the conclusion that no food can be perfect –least of all peanut butter—so there is little point to getting my knickers in a twist about it.  Peanut butter, aside from theoretical microscopic insect parts, has many fine qualities.  I pretend those insects aren’t there, so that I may continue to enjoy peanut butter.  (You don’t even want to know what’s allowed in hops.  Trust me.)

rembrandtIt’s not unlike art.  I’ve visited a handful of the great art galleries of the world.  I’ve been fortunate to see – in person – works by Michelangelo, Picasso, Rembrandt, and the like.  They were beautiful, sometimes haunting, and evocative.  The idea that I will be but one of millions to have gazed at these masterpieces makes me feel connected to the world – its past, present, and future.  But here’s the thing.  Like peanut butter, they come with imperfections.  They remain amazing testimonies to the genius of their creators.  But “The Masters” were human and inherently imperfect.

“But, Flappiness, whatever do you mean that Michelangelo’s works were imperfect?!”

Well, Gentle Reader, I mean exactly that.  If you were to take a fancy camera and put a really pricey macro lens on it, you’d see.  As I’m sure any art restorers working for a great museum could attest.  If you were to zoom in on a portion of a masterpiece, you’d find lots of little imperfections.  Smudges, inconsistency of color, evidence of images painted over previous ones.  You name it.  They’re there.  Which is precisely why I don’t carry a macro lens to the gallery.  (That and the fact that they probably won’t let me in their back rooms.)  I don’t want to see all of the imperfections.

A couple of days ago, I was involved in an interesting exchange in social media.  An image, created by Lizbeth from Four Sea Stars was making the rounds and being shared all over.  On the image – addressing autistic wandering/elopement – she stated, “…Oftentimes, the child is drawn to water.”  Quickly, a commenter jumped in to take issue with her wording of “drawn to”.  The commenter felt that it propagated the myth of autistic children as some sort of mystical creatures with water divining properties.  The commenter, who honestly was quite civil and never outright rude, felt that it was more appropriate to say that autistic people simply “like water”.  A lot of back and forth discussion ensued and people on both sides left irritated or nonplussed.  It mattered little that two well-respected autistic advocates disagreed and insisted that, yes, a large percentage ASD folks are drawn to water.  There was even a very good – very rational and detailed – explanation for why water is so much of a draw for those with sensory differences.  But it went on.  And on.  And on some more.

A few days later, Flannery from The Connor Chronicles, came under fire when she posted about the inadvertent harm well-meaning people can do when they incorrectly assume that all autistic persons are alike.  Parents of autistic children frequently receive messages from friends and acquaintances about such notable (and amazing) folks such as Carly Fleishman and Temple Grandin.  Now, these two remarkable people are not the problem and do much, respectively, to benefit the autism community.  The problem lies in the assumption some make that all autistic children will be like them – if only [insert common misconception here].  The macro lenses soon came out, and it made the rounds that she was attacking an innocent teenage girl.  Yet, a less contentious reading of her post (and past writings and efforts on behalf of the community) makes it clear that she was not attacking a child – merely the side effects of mass societal ignorance of autism.  Instead, the macro lenses focused upon one word in her post (“Carly’d”)– and all hell broke loose.  Obfuscating her purpose and garnering attention for those who prefer drama over awareness and action.

That’s when I realized what’s really going on here.  There’s a very small but vocal subset of this community (both neurotypical and otherwise) who have decided to keep their macro lenses on at all times.  They are so fixated on ferreting out all perceived (and sometimes real) imperfections of thinking that they are unwilling to take off their high-powered lenses to see people for who they really are – whole persons.  The macros stay on, and they lock focus upon everyone they suspect might evidence a little imperfection – especially if those writers have a respectably large platform.  And, as we already know, imperfections – perceived or otherwise – will always be found under a microscope.

It's some kind of produce. But under a macro lens, it's not quite as tasty looking, is it?

It’s some kind of produce. But under a macro lens, it’s not quite as tasty looking, is it?

That’s fine to do with peanut butter and Renaissance masters, if you really feel the need.  But human beings, by the nature of their complexity, cannot hold up intact under a macro lens.  And, by intact, I mean that they cannot be seen accurately with a macro lens.  You see just a portion of them.  Perhaps a wart or two.  But, if you don’t take off that lens and view the subject as a whole, then you will never truly see her.  You won’t recognize her in the grocery store – anymore than the lab tech who viewed the cells from her dermatology biopsy.  You won’t know that perhaps she simply has a different perspective.  You won’t care that she might be in the early and confusing days of her child’s autism diagnosis.  You won’t accept that just maybe her truth might be different from your own experience.  You won’t likely consider that she might – just might – have a point.  All you will see are the nitpicky imperfections in the lens you have chosen by which to view your world and its inhabitants.  And the problem with that is that you then go on to make assumptions about her every “like”, every word, and any of her friends whom you may have also viewed under the microscope.  She becomes no longer a person, but a symbol of all the “imperfections” your lens has captured.  It’s then easier to lump her and everyone you deem like her into a category of “bad”.  In our community’s case, enemies of autism.  Next to followers of Andrew Wakefield, that usually turns out to be parents.  However, it also involves wonderful and insightful self-advocates who simply disagree with your world view.

Am I saying that one should never point out what he believes to be faulty reasoning?  Of course not.  But attaching sinister motives to every statement made by those in the crosshairs of a macro lens is not okay.  It’s not just unfair.  It also deprives the one behind the camera.  It alienates him from some perfectly nice, intelligent, caring individuals who have found themselves inadvertently cast into the world of special needs advocacy.  Only most of these folks aren’t researchers.  They aren’t trained autism experts.  They likely cannot quit their jobs to go about considering and debating everything one would have them believe.  They’re just people–who love their children and genuinely want to make a difference in their child’s world.  They enter threads to connect to others, seek advice, and express their innermost fears, demons, and oftentimes – joys.  They write blogs they hope others will read and connect with.  They make social media images they hope will spread awareness.  In this case, an attempt to raise awareness of the prevalence of drowning in cases of autistic wandering.  This –after the deaths of three autistic children in one week.  There was no motive beyond that.  Only now there are a lot of hurt, angry, and bewildered parent advocates out there wondering why they can’t ever say or do anything right.  I know.  I’m one of them.

miss youOver the past few months, I’ve seen some good people on both ends of the autism spectrum grow weary of the scrutiny of the macro lens.  They are tired.  Their intentions have been mocked and twisted into something unrecognizable.  They’ve signed off of Facebook, quit their blogs, and returned to a life not under the microscope.  That’s a shame to me.  Because we’ve lost some important voices for awareness and acceptance.    Voices both typical and neurotypical.  Voices that have done much good for this community.  Who attempted to bring about positive change, but who could no longer tolerate being dangled before a contentious community and used for target practice.  I can’t say I blame them.  I’ve considered it myself.

Macro lenses are amazing devices.  For there is much beauty in the world when you look at it up close.  But they can also be dangerous for the user.  For, in looking at everything through them, you risk not seeing the big picture.  You risk losing perspective.  You risk getting run over by the Mack truck your lens cannot focus upon.  And, worse, you run the risk of finding the world – and all of its imperfections – a very ugly place in which to live.  You will no longer have the support of family, friends, and community – who’ve all run away from the cruelty of your camera.

self-macroAnd, inevitably, you will one day have to turn that macro lens –on yourself.   Only you may find yourself, through lack of practice and tolerance, unable to accurately or compassionately process what you see.   What a lonely experience of self-loathing that day will be.

For we human beings really are the sum of our parts.  All our parts.  Not just our word choices.  Not just our experiences.  Not just the spot on which we stand in our journeys.

And not just our neurology.

29 thoughts on “Macro Lenses: Nitpicking in the Autism Community

  1. This post is awesome! If it makes just one person stop and think, it will have moved a mountain. Less seriously, I pondered recently at an IMAX showing of Star Trek that extreme close-ups of very pretty people ( I’m talking to you, Chris Pine! Call me!) are not a good use of the sky-high screen. NO ONE’s skin is smooth enough… :)

    • Too many years teaching language arts. I can’t help it. I love metaphors. And you poor people who bear it out it with me… ;)

      • Interesting, as at least for me, there is “mechanical” metaphor of “Wit” that I “love” hearing and enjoy designing as I move along in the land of reciprocal social communication.

        Then there is the “emotional metaphor” that I am often left clueless, without the help of Google.

        As an example a person referred to my communication style as ‘potentially’ appearing ‘smug’, recently.

        I have heard that emotional metaphor thousands of times in my life, but could only get an image in my mind of a bug that was snug, as in comfortable.

        I knew it was still a “negative adjective of metaphor”, but it was never in my direct line of sight, so to speak, to pursue it further.

        When I looked it up on Google, I could “reasonably” see how my communication in the past had been viewed that way at times, although no one had identified it to me directly as such, before that point.

        I did not find ‘that’ writer’s “wit” of mechanical metaphor as reasonably offensive on a personal level, but I don’t ‘catch’ the ‘same’ emotional ‘intent’ that others do.

        I think of the times that I have “Kati’ed”, some online environments with my “reasoned” respectful disagreements, in lieu of the social emotional contagion that is evident in the atmosphere.

        For me, it would be a “reasonable” metaphor of wit, if individuals in one of those discussions had described me as such, However, I “appreciate” mechanical wit of metaphor, and I guess I think others do too, where in same cases they do not all.

        My spouse is very empathic; however, my spouse rarely understands my “mechanical wit” of metaphor. And I often do not understand the emotional “urgency” of the metaphors of emotion my spouse uses.

        I have to amuse myself. :( :)!

        And I spend a great deal of time “Clarfying” and “Verifying”.

        Otherwise, my marriage would likely not have happened vs. lasting 23 years. Nor, would my time spent working with 1000′s of people per week, in the general public, have lasted a couple of decades over a couple of days.

        This clarify and verify stuff, is not only important, it is a matter of basic survival in the world we live in, where people CAN meet each other half way, if they have ‘intent’ of ‘Conscientious’ compassion for people, in general.

        Respect is the metaphor of emotion I had to find a way to understand well, and the emotional metaphor that has literally saved my life. It came with ‘intent’, not just instinct of nature.

  2. This! Thisthisthisthisthis! I can not even bring myself to read many autism blogs anymore, or participate in any online discussion because I get too anxious over someone calling me out as being “wrong.” I’m sick of reading all the anger, when we really are all mostly working towards the same goals. Great post.

  3. Very true. Our kids are all different. Every adult with autism is different from others. Our level of eloquence, our approach to autism, our line of thought. All different, because we are different people with different lives. If we want to connect, share and benefit from the possibilities we thankfully have in these times to do so, we need to have open minds about it.

  4. I haven’t blogged in a long while (February) and I find it is because I am just so tired to being afraid of offending through some odd word or turn of phrase that will be misunderstood, or someone with whom a different view is so overwhelming that I become the target of their angst. Not because of anything that has directly happened to ME, but because of what I see with other blogs.

    You’ve nailed it.

  5. Agree with every word. Except peanut butter. I don’t get peanut butter. It sticks to the roof of your mouth. Maybe it’s because I’m Irish.

    • Is peanut butter just an American thing? Must be like ketchup… What do you you have in Ireland that I would probably hate? I know Australia has Vegemite…

    • Of all the people I wanted to understand the intent behind my words, it’s you, E. Thanks for coming by to say that. I’ve said it a lot and will no doubt say it again, but you are one of my self-advocate heroes. Such class. I look forward to showing Callum one day all of your wonderful writings. Thank YOU. :)

  6. Thank you!!! Well said, much needed, greatly appreciated and instantly heeded.
    I hope your words help our community step back from the fray and maybe even learn to appreciate the complexity and diversity that exists along this journey!

  7. Thank you for writing this. I, too, worry how people will interpret my blogs. I try to chose my words very carefully because of that. It is so disheartening how one group will go out and attack another group or one person targets another person just because a word was taken out of context or their opinions differ slightly. It is hard for me to deal with the “us” versus “them” thinking among people who have Autism and people who don’t. It is even worse when people within the Autism community have this type of thinking. How are we ever going to make the world a better place for our children when we are always nitpicking and fighting with each other?

  8. Well put. I’m new to the autism club and am often very tired and have trouble being coherent. That you and so many of your fellow bloggers are not only writing so eloquently but also thought provoking items, leaves me constantly in awe. (P.S. by thought provoking I don’t mean controversial, I mean they make me think, often in new and interesting ways)

  9. Hi Leigh, I came across your Blog earlier last year, and I quoted it several times as your opinion was such a wonderful bridge in the Autism Community, at that time, in providing Clarification of difficulties in reciprocal social communication, presented in an emotionally meaningful and reasonable manner.

    It was encouraging and uplifting for me to read.

    The ‘detail thinking’ is not a part of “Autistic Reciprocal Social Communication” that is going change, as that is an identified part of a neurological difference in cognition, both ‘mechanical’ and ‘social’.

    However, for those individuals who are ‘able’ to communicate, there is the challenge of clarifying and verifying communication, which is a ‘noble’ goal for effective connection with others.

    While many people on the spectrum cannot ‘easily’ turn off the “macro lens” for details, those individuals who have “developed” a strict moral “code” in how they view the humanity of others can pay attention to the ‘details’ of their own reciprocal social communication and do their best not to ‘personally’ offend others based on past experience of the ‘emotional’ impact of “certain” words on other people.

    An effective means of accomplishing this noble goal, is through clarification and verification of communication between people on and off the spectrum for a ‘literal’ vs. ‘figurative’ type of communication difference..

    I find excellent scripts on the “Autism Discussion Page’ on Facebook to help people learn to do this, without the trial and error method I relied on, in my life.

    The name redacted individual came to ‘that’ blog and ‘that’ blog writer clarified to ‘that’ individual that ‘they’ were not directing a ‘personal’ attack against the individual, however, never the less, it can be “reasonably” viewed as “insensitive” to use a person’s name as a metaphor of wit for anything ‘negative’ in life.

    ‘That’ individual ‘too’, though, is on the spectrum as well, so it is also turning on the “Macro Lens” in not providing “a little” understanding that people on the spectrum do come up with “Wit” without ‘clear’ understanding of the “emotional” impact it may have on others, at times.

    I have some said some “witty” things in my life, without a clue of how they impacted other people “emotionally”. That comes with ‘the territory’ and one can ‘live and learn” with ‘compassion’ for other humans.

    “Compassion” like “Cognitive empathy” is not just an “affect” of emotion, it is a skill that can be increased and “empirically” measured, through the course of life, through “trial and error” and/or “script” of communication.

    It is the “human effect”, that in the ‘end’, is what ‘matters’ most, whether the ‘intent’ is from “affect” or “effect”.

    I refer to “Autistic Love” myself, as a metaphor of an unusual type of “Altruism”, that is at least in part “Algorithm” in ‘nature’, but for some people who are challenged with a “disconnect” in language and emotion, an ‘attribute’ of ‘integrity’ and ‘character’ without expectation of ‘intrinsic’ or ‘material’ social reward.

    I have been making a list of 30+ unique and often obscure Safe Sites for people on the spectrum and people who love them.

    I am adding yours today, that I ‘should’ have already remembered from my encouraging and uplifting experience on your blog in the past. I am also ‘sadly’ removing another one, which I “calculate” is no longer safe for segments of the Autism Community, for my ‘major’ requirement that a space ‘must’ be safe to ‘clarify and verify’ communication for people on and off the spectrum. Additionally, I am trying to find the “hidden jewels” of blogs among ‘us’.

    To be clear that ‘other’ site is still a valuable resource of acceptance that many people on and off the spectrum continue to enjoy and benefit from. I attempted to keep my “macro lens’ off’, to keep it in my list, but it is no longer ‘an issue’ of “just” a “macro lens” for the ‘full’ Autism Community.

    I am not a “special” person nor is my list a “special” list, but it is meaningful to ‘my mind’, and worthwhile to ‘share’ with you, linked below, as some of these opinions come from an ‘atmosphere’, of a “Wrong Planet”, where some individuals don’t often venture far from those ‘online walls’, or the ‘walls’ of their own personal blog or website. :)

    “30+ Safe Sites for People on the Spectrum and People Who Love Them :)!”

    http://katiemiaaghogday.blogspot.com/2013/05/30-safe-sites-for-people-on-autism.html

  10. And this is why your blog will ALWAYS be on my absolute MUST READ list (even if I am a little late) and why it will always be listed as a good read on my own blog. I love how you write and the insights you have. Thanks for being someone I can trust as I try to navigate this road of raising children on the spectrum.

  11. Excellent points, as always!!

    The autism community is not representative of autistics, nor is it representative of parents of autistics. Only certain types of parents, and an even smaller subset of autistics come to the autism community. They seem to be the attention seekers and wannabe experts who come to the Internet to assert opinions about something they know almost nothing about. I have read blog posts about autism that made me cringe and I sincerely hoped that nobody out there would read that stuff or take what those people write seriously. I would bet that fewer than 1/50 autism families have a member who participates in the discussions in the autism community. The vast majority of them stay away from it. The community is relatively tiny and not representative at all.

    They call it an “autism community”, but it is really a community of neurotypicals who gather here to talk about autism in the presence of real autistics. As far as I can see, neurotypical parents and people who profit off of autism get a lot more support here than autistics do.

    The autism community is just business promotions and outspoken people ranting, no different than any other social media. Is anybody listening to any of it? God, I hope not!!

  12. Yep. I’ve pretty much given up even commenting on most autism related blogs because I’ve found whatever I say it’s not the right answer, like I’m being tested.

  13. You make the autism community sound so nice, as if it is just a place where some parents disagree with each other on a few things and they get a little more worked up than they should. As far as I have seen, there are people who intentionally traumatize and bully others in this community, including autistics who they claim to support.

    I read one blog post where the person actually admitted being prejudice, and ableist, both of which really are anti-autism sentiments. Not something I would expect to read from a sincere autism advocacy blog.

    I also read a blog post by a blogger in the autism community who was trying to apologize for “my part in that nasty game we all played”. Yes, it was a nasty game they all played alright, a game they once denied playing. Exposed as liars now that the confession came out in a blog post. But who doubted they were lying all along? They have attacked NTs too.

    Yes, there are groups in this community who are here to play nasty games. And they thought it was all fun and games back when they were destroying other people. But when they were exposed to the community for what they were doing, their “nasty game” suddenly backfired on some of them, so they started playing the victim instead. I wonder if they have as much pity on their own victims as they have on themselves. Doubtful.

    There is evidence that one of them harassed and bullied at least one person for just being friends with and speaking to one of their victims who they wanted to keep isolated. They wanted that person to feel alone, like they had no friends at all, so they actually harassed a friend just for having a conversation with that person. New lows….

    Notice the blogger wrote “we”, not “I”. Yes, these were coordinated group attacks. Not at all like the ideological disagreements you wrote about, which do happen frequently in the autism community. But the “we” that the blogger mentioned would attack people for no reason, catch them when they least expected it, with the goal of publicly destroying the individuals they attacked. They will even attack a person for supporting someone they hate. Do you think I’m making this up? Some people reading this comment will be very familiar with what I am talking about, because they might have been personally targeted in some of those nasty games.

    And yes, people have had to leave the autism community because of being traumatized in such ways, and because it was no longer safe for them to have a blog here, because of those nasty games. The whole community loses when people play nasty games that only ostracize other bloggers from the community, as you pointed out. And in at least one case, there are some people who are trying to get a blogger to return to this community, a blogger who was ostracized by those nasty games. That blogger had more than 25 unpublished posts in various stages of completion when that happened. Some of those posts would have been really good. I bet people would have liked to have read some of them. Those posts remain in a file on a computer, and they will probably never be looked at again. All because some people thought it would be fun to play games.

    I wish all the problems in the autism community were like the minor disagreements you mentioned in your post. Unfortunately, they are not.

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