If I May Be So Bold

I’ve had the, um, experience of interacting with some autism-hating parents today, and, given that they have no interest in hearing me out, I’m going to say here what I wish I could say to them.  Selfishly, it’s for my own sanity, because I know that no one who truly hates autism will even take the time to read my words.  Heaven forbid they see that life doesn’t have to be filled with hate, right?

I believe that autism is a part of me, much like my gender or my hair-color.  If linguistic choices are a determining factor, then I am autistic and not a person with autism… that is to say that autism is not a purse that comes with me, and when it gets to be too heavy, I set it down.  It is an inherent part of my being.  I am not a “person with femaleness,” but I am a woman.  I am an autistic person, as well.  Once a caked is baked, the tiny grains of flour become integral to its structure and its very existence.  Those little grains are like my autism.  Even if you could complete the totally impossible task of removing the flour from the already-baked cake, you wouldn’t be left with a flour-less cake…. you’d have nothing.  Without autism, you wouldn’t have me, either.  My recipe of personhood requires that autism is a part.  There are recipes for flourless cakes out there, much like there are “recipes” for autism-less people (we call them NTs!).  But, you can’t just remove the flour from a cake that needs it to exist.  There is no cake without the flour and no Lydia without her autism.

Some parents hate autism.  They say it robs their kids of… many things.  They say people treat their kids badly, their kids miss opportunities.  Their kids are square pegs in round holes.  The current rhetoric on autism touts the idea that we must, then, turn the square pegs into round ones.  Shoving a square peg into round holes will only damage the peg, and deeply so.  Ask me how I know (or read here).  In the end, and the way I live my life now, is with a square-hole drill in hand.  Now, they don’t sell those ready-made… you’ve got to build them for yourself.  It’s damn here impossible to find a ready-made life for an autistic person; instead, you’ve got to parse and parcel this program, that job, this housing, those services, and, in the end, you’ll get a square hole.  It won’t look like a round-holed, NT life.  That’s the point!

I get that autism can be hard.  Often, parents, hear or read my ability with words or my more-or-less ability to interact much of the time and think that I don’t “get” their “flavor” of autism.  One parent said that I don’t know what eating-disordered, self-injurious, violent, screaming-at-brushing-the-teeth autism is like.  I absolutely understand every one of those things. I understand relentlessly bullied, screaming at the parents, hurting myself, suicide attempts, psych admits, refuse to let Mom wash my hair (as a kid, that is), starving myself (both due to texture issues and, later, body image issues), Risperdal-taking (still do), screaming out of frustration at being unable to communicate my needs, accusations of creating my own medical issues because doctors don’t look at me and think “autism” but rather look at me and think “mentally unstable”… I GET IT.   I choose not to say “I’ve come a long way” but rather that “I’m in a much different place,” because there is nothing, if anything keeping me from sliding right back there.  Please know that my ability to use big words only says that I can use big words; it says nothing about my experiences with autism.  

But here is what I know: My suffering with autism is not at the fault of the way God made my brain; it’s at the fault of living in a world that doesn’t get me.  And, if I continue to shove myself into a typical-looking life, I will only damage the peg.

When parents blame autism for their pain–their kids’ pain–a couple of things happen.  One is a lot of anger and bitterness at something they cannot change.  I live with significant medical situations every day… I have a feeding tube, ostomy, insulin pump, and port, and I’ve been in a nursing home for the last year at age 26.  I know pain and frustration and unfairness and losing a life I always thought I’d have.  Here is something else I know… that fighting what is will bring ONLY more anger and bitterness with it.  I can choose to scream and cry and vent vent vent, or I can choose to focus on the things that DO bring my joy, even in the midst of pain that even a Fentanyl patch isn’t handling effectively.  When I try to help parents see that there is another way, it’s not because I will gain something from “winning them over.”  It’s solely because I want them to live a more peaceful life.  Another thing that happens when parents hate autism is that their kids come to hate autism, too.  A kid isn’t born with an inherent knowledge of what autism is.  We teach that to him.  So, if we teach him that autism is why he’s bullied, he’ll want to change his autism.  If we teach him that the lack of perspective and insight from other kids is why he’s bullied, then he’ll want to change the perspective and insight of other kids.  Let’s grow our children in to people that want to make the world around them better rather than people who blame themselves for the ills of society that are not their fault!

I’ll say it again, even though it won’t reach anyone who needs to hear it… I have nothing to gain by changing the minds of parents who hate autism.  I only want them to find happiness.  It hurts me to be attacked when all I want is THEIR happiness–like I’m trying to spoon feed them cod liver oil.  I have a message of positivity that promises a life of greater peace… and yet, I’m yelled at for disrespecting, shaming, and threatening people by wanting to spread it?  It is beyond me.  It’s beyond me why anyone who needs to hear what I have to say won’t get this far in the post to hear it.  It’s as if people are cloaked in an immunity to positivity, and that, I do not understand.



I Stand Behind the Puzzle Piece

The puzzle piece is a point of contention in the autism world.

Many accept it as the unquestionable symbol of autism awareness.

But, that–awareness–is precisely what many self-advocates protest.  They argue that we are “people, not puzzles.”  These vocal advocates stand in opposition to everything the puzzle pieces stands for… the idea of awareness and not acceptance, treatment and not accommodation, autism as “other” and not part of a beautiful whole that is humanity.

Being a moderate in the world of autism is a tough thing.  On many fronts, I agree with the self-advocates; it is no secret and thus I am hiding nothing when I come out and say that one of their biggest battles is against Autism Speaks.  There is an active boycott (if one can actively do a passive thing such as boycotting) against Autism Speaks.  Though I agree with many of the claims against the mega-charity, such as disproportionately high pay to higher-ups and low giving to people who need it most, as well as the idea that autism is some monster in need of a cure, I do not and will not fight, battle, or in any way bash them.  

I’ve heard that being in vocal opposition to Autism Speaks could cost me opportunities in the future, but here’s the thing: While I see issues with Autism Speaks, I will have no part of combating problems with more negativity.  I believe, strongly, that truth and good will prevail, and so I seek to add to the body of truth and good and positivity rather than engaging in attacks.  Don’t fight hate with hate–fight it with love.  

Whether or not it will cost me positions and opportunities in the future, I don’t know, but I will seek truth and justice, and in doing so, I do call Autism Speaks out on their failings.  But, I’m not fighting, attacking, accusing them.  I’m going to stay over here and do my own thing, focusing on positives and love and joy and HOPE… and, in doing so, I contribute to a future of all those things rather than a future full of battles.

The puzzle piece, though… it has become something of a symbol of the battle.  The rallying point of those against it is that autistic people are, in fact, “people, not puzzles.”  I totally agree with them, but I do not and have never seen the puzzle piece as any implication that autistic people are puzzling.  Instead, I see it as a symbol of a world in which autism has a part… and a world in which each of us is a small part out of which we seek, we hope, we strive to make a successful whole.  

My piece, my part.  Your piece, your part.  

So, I support the use of the puzzle piece as the symbol of autism awareness in a world in which we all matter.  As far as mainstream awareness goes versus the idea of the minority cries for autism acceptance… again, I recognize the battle there, but I don’t want to be a part of it at this point.  In the past, in my early years, I have supported the Light it up Blue campaign, and then, for a time, I thought that I was wrong for doing so and fell away from it.  This year, I have too many irons in the fire to have a very clear opinion on Light it up Blue, but I DO and I WILL support April as a month of focus on accurate information about autism.  As for awareness versus acceptance, I absolutely support both.  I don’t like the feeling that, if I support awareness, I feel shut-out by those who want only acceptance… yet, we cannot have the latter without the former.  In a world where people think autism is “a disease” and have so many other misconceptions, I will continue to work toward ensuring that the public has accurate knowledge about the autism spectrum.

I will continue to fight for our piece in the whole puzzle that is humanity.  That is one fight or battle in which I will wholeheartedly engage, and you can call it whatever you’d like.

Smorgiddybump (and other Wordswordswords)

Many people, both professional and lay alike, are sometimes initially reluctant to believe that I really do have autism, and I think the biggest reason for this is my verbal ability.  Even professionals are taught that autism = speech and language impaired.  That’s not untrue–at all–but it’s also so much more complicated than it might seem.

For me, language is one of the most complicated matters to explain with words.  Funny, right?  No, more like frustrating.  Speech is the first and most obvious matter at hand in this arena: Can I get the words out of my mouth?  For roughly two years, 2009-2011, I struggled greatly just to get the dang words from my head to my mouth.  For 21 years (prior to 2009), I didn’t know that I had autism… but I did, on some level, know that it wasn’t okay for me to simply do things the way that came naturally to me.  I had no idea that I had a different neurology.  I blamed myself for being unable to fit in like I thought I should.  I was diagnosed in January of 2009, and I graduated from college that May.  Imagine acting in a play 24/7/365.  You play your part so well, you don’t even know who the “real you” is underneath.  That’s how I lived my life, and it was utterly exhausted.  Following my diagnosis, my ability to “fake it” (knowing as “passing” in disability circles) started to unravel.  That semester was my student teaching semester, and just two weeks in, I was totally shutting down from the stress. I wasn’t allowed to tell anyone either at my college or at the school where I was teaching about my diagnosis; that was “personal stuff” that “shouldn’t matter” in the classroom.  Except, it did.  By forcing myself to be everything that didn’t come naturally to me, I developed horrible migraines.  I was physically sick from the stress of it all.  I quit student teaching after 2.5 weeks.  I did graduate, and for the next two years while I lived at home, I was often unable to speak at all.  I seriously regressed in many areas.  I didn’t know then that losing speech isn’t uncommon for autistic people.  For me, it was sensory overload meeting with feeling pressured to return to that state of faking it–that’s what would cause me to lose my words, and it happened often.

These days, it almost never happens, and that’s because I’ve taken the pressure off myself to fake much of anything at all.  I’m not like most people… and, instead of pressuring myself to pretend that I am, instead, I choose to educate others about differences and why they’re a wonderful thing.

My speech, these days, sounds almost typical.  Sometimes my cadence is off.  Sometimes I get script-y, especially in the car with my mom.  But, more or less, I sound fairly typical.

But that’s where it starts to get complicated…

It sounds like I have a ton of vocabulary at my disposal, but, I have a hard time with word retrieval and even concept retrieval.  I lost my train of thought more than most folks.  A lot more.  I also have a hard time getting the word I want… “it starts with an p and it’s when you do something in opposition to something else?”  The word was protest, that time.  I do this multiple times per day, though.  I have a hard time calling up the words I need, when I need them.  I can often see the painting, in my mind… I can see the finish product of what I want to communicate… but I can’t figure out what brush strokes I need to use to make the painting.  This greatly reduces my actual ability to communicate things in real-time, in real life.  Sometimes, this results in instances like this: We were at the grocery store following a doctor appointment in which I found out I would have surgery to remove my colon.  My mom hung up the phone after talking with my sister, and I asked, “Did you say to her that they would take off my butt?”

I also sort of get stuck, is the best way I know to describe it.  My mom was standing on the other side of my bed from me, and I asked her to pull the curtain.  She pulled it.  “No, the curtain.”  She said, “I’m pulling it.”  “NO, the CURTAIN.”  And so we went, round and round… and round… what I couldn’t get out of my mouth was that I wanted her to pull not the window curtain but the privacy curtain–two different curtains.  My brain couldn’t switch gears to get the necessary words out of my mouth.

(Speaking of losing my train of thought, this is the second time since I started this post that I’ve done that, now…)

Often, when I write, I have a hard time making sense of my own words when I read them back.  I read others’ words, and I don’t understand nearly as much as I appear to get… I pick out a word or phrase or idea that I DO get and respond in detail to that… but the whole idea of their words is totally lost on me.

Oh!  I got my train of thought back!  It was this: I have a processing delay, such that, when someone asks me a question, I need an extra few seconds to answer them.  Some people on the spectrum need much longer.  My delay is just long enough that I do okay speaking with one other person but have a very tough time with a group.  Anyhow, in an attempt to “fill the gap” when someone asks me a question, sometimes I accidentally let my mouth answer before my brain has any idea what you’ve said.  My nurse, one time, asked if I needed her get to me something down the hall.  I said yes, even though I meant no.  She asked if I needed anything else, and I said no, but meant yes.  So, she brought me what I didn’t want and nothing more, and I looked at her like she was nuts… I didn’t know what she’d brought me what I didn’t want and didn’t bring what I did!  I don’t generally hear myself answering, either, and it’s so ingrained in me to just answer that I don’t usually think to ask for a moment to think.  As far as my nurse, she now said, “Are you answering me automatically?”  It’s hard to put the burden of my answer on someone else, but it’s also hard to teach myself to stop and think.  Sometimes I answer then say, wait, I’m just answering you without thinking, and then I think and respond.  I need a surprising amount of time to process.

Point number whatever we’re on, another struggle with language, is that I often sound very eloquent when the topic is an area of expertise, but when the topic or situation is novel to me, it’s much harder.  In her book Reflections of Self, my friend Sondra Williams describes her Gumball Theory, which essentially goes like this: Each attempt at communication requires me to put a quarter, a token of effort, into my gumball machine.  My machine has many red gumballs, which are utterances or expressions that aren’t helpful or pertinent or intelligent or otherwise what I want to get out.  But, I have a few blue gumballs… and those are the prize.  The blue gumballs are communications that are on topic, make sense, and actually convey what I want to say.  Often, when I attempt to communicate, I get red gumballs.  Sure, sometimes it sounds smart, but it may not be what I actually wanted to say in that moment.  Sometimes, for me to convey what I want to convey, I say a lot of things

Where I’m about to go with all of this is where I’m afraid I’ll get burned, and that is exactly my point, oddly enough.

Many people in the disability community are really focused on… words.  And I get that.  I know how I feel during conversations like this:

Me: ” Blah blah blah… is because I’m autistic.”

Person: “YOU have autism?  You must be VERY high-functioning!”

I want to explain to them the errors of that response, but, again, with processing… I can’t respond in real-time to a comment like that as I’d like to be able to do.  I know how bad those comments make me feel.  My sister often says that I need to look at the intention… they mean well.  I get frustrated with that.  If 2% of the population is autistic, then, just like it’s considered inconsiderate, rude, even hateful to use racial slurs, I think there is some burden on the public to learn about appropriate language surrounding disabilities.

But… when I’m among groups of advocates who are very focused on language and rhetoric, I become completely overwhelmed.  Given my language issues, I simply do not have the ability to work around everything they perceive as a linguistic no-no.  I become absolutely terrified to say anything at all, because I know that whatever I say will be met with, “That’s (insert -ism here).”  That’s ableist.  That’s racist.  That’s audist.  That’s classist.”  I have no idea what intersectionality means and I don’t truly get the ideas about “privilege,” (and, no, this is not an invitation for you to define those words for me right here and now).  The language surrounding those ideas is so full of words that have no concrete meaning, words that are simply… words.  When I hear this:

“Intersectionality (or Intersectionalism) is the study of intersections between different disenfranchised groups or groups of minorities; specifically, the study of the interactions of multiple systems of oppression or discrimination” (from Wikipedia’s definition of intersectionality)

I might as well be hearing, “Smorphism is the study of the diseavegum between different plovertymump groups or groups of shravocking molyglops…”

You get the idea.  They’re words.  Words without meaning.  While I get, on some surface level, that calling a striking situation “crazy” can be hurtful toward someone who identifies as such, I also get confused very quickly, the further into that we delve.  I mean, words change meaning over time.  Just because a word, at one time, was used to refer to a group of people, does not mean that what I’m saying has anything whatsoever to do with that group of people.  Also, as someone who has had mental health issues, does it make any difference that I might as well be referring to myself?  Does my position in this whole thing change the words I can use without being guilty of an -ism?  I don’t know, but I daren’t ask the questions, because the conversation so quickly devolves into words words words that have no concrete meaning that I just want to bury my head in the sand.

See, for all I know, phrases like that (bury my head in the sand) have some history in referring to some minority group and therefore could be -ist toward somebody and, well, for Pete’s sake (is that an -ist statement, too?)… I come to fear saying anything.

So I don’t.

So I don’t blog at times, so I don’t write, so I don’t seek opportunities.  So I don’t engage, because I might say something wrong.

I can’t say that I know where to draw the line between, “Have you thought about the words you’re using lately?” and “You speak words words words but I have no idea what you’re even saying anymore.” 

I do know that I’m going to think and look more closely at what people mean to convey–the heart behind it–than at the words they choose to convey it.  I don’t want people to fear saying something wrong in my presence.  I don’t want to miss a good heart because of what I perceive as poor choice of words. 

I open to comments and talking about this, but I warn you that it’s a subject that, again, devolves into meaningless words pretty quickly for me, so please don’t be offended if I ask for clarification, rewording, or otherwise.  I’m trying to engage with what you mean, not just what you say, and that’s hard for me.  I’m great at finding a way to respond to some detail of what you say, but it can be difficult for me to grasp the totality of what you mean. 

But, we’ve got to start somewhere, so, let’s go.  What do you think?

I Don’t Want to Inspire You

I’m sitting here, trying to hold onto my really, really big thoughts so that I can type through them later.  I have carpal tunnel in both wrists (big surprise, for the girl who types nearly every waking moment!), and the right one is killer… but sitting with the thoughts, as they weave themselves into pleasing phrases and sentences and paragraphs, is akin to torture.  I can’t sit with them inside me; they must, they must come out.

My really big thoughts come from some really big hopes and dreams.

I want to serve, not because I have an excess of money or influence, but because I have hope to spare, enough to share some with others in need.

I want people to look at my life, my relentless positive attitude, and wonder what makes me different.  

I want to have the guts to say the word–Jesus.  I want the wisdom to know how to speak the truth without turning people away.

I want the courage to speak out on the really tough issues, ones about which I have a firm opinion but fear speaking out because my opinion won’t be popular with some very important people in my life.  

I want my drive to seek the truth and the Truth to outweigh my fear of others’ opinions.

I want to be in a place, every moment, of loving this life but never so much that I’m not willing to leave it all behind in an instant, should He call me elsewhere.

I want to change people.  Some people want to change things… politics, status quo, paths… not me.  I want to change hearts.

I want to know I’ve made a difference.  

But, I don’t want to inspire people with my story.  I want you to know that I am not behind any of this, but He is.

Biting my Tongue

I’ve had a couple of really tough incidents involving other people on the spectrum (or, as one claims, formerly autistic) in the last week.  One involved one autistic woman calling another’s size “huge.”  The accuser was actively engaging in eating disordered behavior; she said she was a size 3 and wanted to get down to 90 lbs so “a size 8 is huge to me.”  The woman she accused was recovering from anorexia.  I sort of stepped in and tried to moderate, explaining to the accuser how, even though she wasn’t trying to be accusatory (she wasn’t), that those words could have really hurt the other woman.  I tried to explain how, even though she didn’t mean to be rude, by apologizing, she lets the other woman know that she didn’t think badly about her and didn’t mean to be nasty.  

I don’t know if she “got it.”  I don’t know when to say, “Well, autistic culture is valid, and if she doesn’t feel the need to apologize, then she shouldn’t,” and when to say, “She needs to make sure her words won’t send the other woman throwing up over a toilet for the next month.”  I don’t know.

Another incident involved an adult male, also autistic, who I’ve had issues with in the past.  Years ago, he asked for my help on a “theory” he had developed that, he claimed, had allowed him to overcome his own ASD and all his social issues.  I remember thinking the theory was ridiculous and trying to converse with him about different aspects of it, and him saying I wasn’t being helpful “enough” and giving him enough to go by (he was paying me a small amount for my help).  I also remember things getting slightly ugly and me asking for no further contact, which, there was none, until a year ago, roughly, when he emailed a large group (he said this was the group who had helped him previously) about another, totally unrelated theory.  I ignored that email, and the next few (all theories about off-hand subjects)… until the most recent, which made a factually inaccurate comparison to something (I don’t recall the thing, if I even read far enough to know what it was) and aspects of diabetes.  He did not qualify that his facts only applied to type 2 diabetes, and he made inaccurate claims, i.e., diabetes causes obesity.  I tried to tell him that he had some factual errors, and he insisted he didn’t.  I said, listen, this hits close to home… when people (like he) make inaccurate statements about diabetes, that is why people ultimately end up asking me why I don’t just “eat less and exercise so I don’t have it anymore” (I have type 1, juvenile, diabetes; I’ve had it since age 3 and will for life).  Diabetes is related to my many, severe health issues, though not exactly the cause… and I don’t appreciate feeling like others blame me for my condition.

So, he went on to say: “This old man has had juvenile diabetes since 1943 and he eats a low carb diet and HE isn’t super sick like YOU are so why is THAT?”

Yeah.  He did.

I flipped.  I told him that he has no idea what my situation is and that he is COMPLETELY out of line to attack me like that, to claim that I could have somehow prevented my situation if I just “ate low carb.”  I was also angry because I never said that low carb wasn’t healthy, just that type 1 diabetics will still need insulin regardless of carb intake.  He totally twisted my argument.  

Then, I said, “People like YOU are the reason that the public thinks autistics are assholes.  You claim you cured your autism, but you’re still an asshole.”

Yep.  I did.

Here’s the thing… I’m quite a majority  made of sugar… super, super sweet, kind, loving, very gentle.  Buuut… there’s a decent portion of feisty in me… and a really, tiny, almost-never-comes-out biting side.  I can pull out some seriously biting words.

I totally embrace the feisty, quirky parts… but I’m not brought of the nasty words.  Sometimes they’re almost impressively purposeful and clever… but hurting people isn’t “me,” and, even in situations like the email-asshole, I want to reflect Jesus, not the world’s idea of a woman who can hold her own.  Even if I CAN hold my own in any battle of will, argument, or words… and I can.  Trust me on that.  I don’t want to be proud of that ability, because I don’t think it reflects humility and grace.

My classes are off this week for spring break, and so I’m spending a few days with my parents (and, more importantly, MY KITTIES!).  One of my family members and I generally struggle to get along.  I honestly feel like he follows me and searches for reasons to get angry with me, and I get really frustrated, because I feel like I walk on eggshells trying to please him and, truly, there are many times that I am damned whether I do or don’t.  If I ask for help, he’s mad, but if I don’t, he’s mad.  He was angry because I slept until 9:30 this morning and I could give you a list of reasons as to why that’s totally ridiculous and hypocritical, but…

To what end?  As I was venting to my mom, she said, Lyd, you’re “stuck.”  Maybe I was, I don’t know.  Maybe I was just getting the frustration level down to a point that I could spent the day with him.  I wanted to argue with him and prove my point.  I wanted to be cold to him all day.  I wanted to vent… I deleting my retelling of the events and reasons why he was unfair several times just as I typed this post.

But it would not serve anything positive.  It’s so, so hard for me to bite my tongue!  I crawl out of my skin when people make comments on Facebook with inaccurate information.  I want to scream.  I go around correcting everybody, and I totally realize I’m a know-it-all.  Often, it has nothing to do with wanting to be right, but more that I simply want “right” information to be conveyed rather than things that aren’t even true.

I think about the way my family member lives… looking for wrong, for reasons to get upset, for things to correct.  I honestly feel sad for him.  

I realize I’ve nearly gotten to the point of a Rampage for Right, of correcting, arguing, exacting…and I go on to realize that it’s not always about being “right,” but about building each other up.  It’s easy enough to correct someone, but it’s far better to speak encouragement to them, to focus on their hearts.

I apologize to the people I’ve snipped and snapped at and to those I’ve upset with my overly-correcting behavior.  Take this as my pledge to try to see through grammar mistakes and factual errors and see through to what matters.  It can be such a fine line, and I’ve been through the gamut of experiences this week, ones that call for stepping in… and those that call for grace and moving on with peace.

And, if you see my making weird faces, just assume I’m actively biting my tongue, as it may sometimes come to that to curb my willfulness!