Tag Archives: autism community

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.

Poof!: Losing an Autism Diagnosis

Guest post by Jessica Severson.

When my son was a baby, it was obvious pretty quickly that I didn’t fit in with the other moms. I didn’t want to get together and chat about breastfeeding or potty training. My son was on formula (which always required an explanation) and he was colicky for so long that you couldn’t call it colic anymore. He was a tough baby. He was often upset. Getting ready for naps was hellish. It only made it worse to sit around with other mothers who were so happy with their joyful, calm little ones.

I felt alone for a long time. Then my son was diagnosed with autism and I understood why I’d never fit in with the normal community of parents. We were different. And it wasn’t just in my head, it wasn’t just a difficult adjustment to motherhood.

So I started the search for community again. I found parents of autistic children of all ages. They understood how I felt, they knew all the conflicting emotions, they sat through hours of therapy sessions. I got advice and support and began to feel like maybe I belonged.

Over the course of 2 years my son’s improvement went from inch-by-inch to mile-by-mile. The issues he’d had began to fade: he went from nonverbal to a budding vocabulary, his meltdowns turned into plain-old tantrums, his stimming became normal pretend-play where trains chatted with zebras, his fear of other children subsided in favor of games and playgroups. We saw less frustration and more happiness. He became more easygoing, more outgoing, more enjoyable.

After his diagnosis I didn’t dare to hope for much. I wanted to love my son no matter what, but then all that I’d hoped came true, and so much more.

It should have been the best kind of news. But I couldn’t feel completely happy about it.Now I’m told that in a few years my son will be re-evaluated and his doctor expects that he’ll lose his diagnosis. I will no longer be An Autism Mom or A Special Needs Mom. I will no longer be a member of the community that gave me a home when I needed it most. Maybe it’s already started.

We will still be friends. But my experience, where I lived in the thick of autism for only a couple of years, can never compare with theirs. Their daily challenges, their searches for therapists and schools that care about their children and help them to become a part of the world, it’s no longer something I can empathize with. I am an outsider. Now I’m supposed to make my way among the NT’s (neurotypicals) that we’ve always talked about.

My journey wasn’t for nothing. It may have been short, but I learned lessons most parents never will. I’ve experienced the kind of heartbreak and guilt that most parents never have. I no longer live in a bubble of parental ego-stroking where I get to feel responsible for my child’s accomplishments. I’ve seen just how fundamentally my son achieves things on his own. I’ve learned that developmental milestones have nothing to do with mental or emotional intelligence. I’ve learned to never say, “I don’t know how you do it.” I know the secret: you just do it. You have to. There’s no other option.

Still, I’m not sure where I fit now. I don’t know who my peers are. I don’t know what I have to offer other parents. I used to feel good because I was out there helping people navigate a difficult time. It helped to get emails from parents who’d just received a diagnosis or concerned grandparents who were trying to figure out how they could understand this change in their families. Now, what do I say? How can I tell them to accept the diagnosis when I no longer have to make the same sacrifice? Do I want them to hope for an outcome like ours when I know it’s just not possible for everyone?

And then there’s the issue of how to feel about losing the diagnosis. I’m happy for my son’s progress. But I don’t want him to be ashamed that he was autistic. I don’t want him to feel like he is better than someone with autism. How do I avoid alienating adult autistic advocates who want autism to be something without stigma or shame?

I can’t answer these questions so I’m trying to focus more on my son. What impact will it have on his life to lose his diagnosis? Does he need to know he had it? Will we tell other people? How much is it a part of him and how much of it is separate from him completely? Will he have to worry about a higher risk of autism or other disorders with his own children?

I’m trying to take it a step at a time. I’m trying to find my way through day by day, just like I did when Graham was diagnosed. Maybe I’m ready for the normies. Maybe I’m not. But the thing I know for sure is I have a lot more friends now and a lot more support. Whatever comes, I think we’ll figure it out.

Jessica Severson

Jessica Severson is owner/writer at Don’t Mind the Mess.  Jessica’s bio is interesting enough.  I’ll let her speak for herself.  😉