Putting a ban on story-toppers!

You know what I can’t stand?

Oh, gosh, well now, that sets us up to be here a while, doesn’t it?  I can’t stand wet socks, and I can’t stand loud noises, and I really and truly can’t stand real pants!  Put me in anything with a button or a zipper, and I turn into insta-cat-with-clothes on.  I go rigid and act like I can’t move, because, well, have you ever worn pants?  For that reason, I wear comfy knit shorts, or, more often, leggings and skirts… skirts that have stretch, of course.  But no real pants.

I’m not known for my ability to “suck it up,” as it were, unless you’re talking about Diet Mountain Dew and a straw.  If I’m miserable, um, you’ll probably know about it.  My mom sometimes says, “And what do you want me to do about [the fact that your socks got wet in the rain and we're in the grocery store]?”  Oh, right.  Sometimes I forget that my mom doesn’t have the ability to instantly fix every wrong situation.  She sure can fix a lot of them!  But sometimes, even Mom can’t solve the dilemmas that the world throws at me.  I’ve sort of learned to hush up about pain and nausea and the usual things I deal with of that variety, but nary a wet sock nor tag in my shirt will plague me without the world knowing of my unhappiness.

So, when people get on my nerves, it’s um, really, really hard for me not to come right out and set them straight.  I get quiet and cross and really have a hard time just dealing with it, and lately, one situation is on my nerves more than any other.  I’m happy to say that I’ve devised a solution… but first, I’m just going to put it out there, once and for all, how bothersome this behavior is to me (and many others).  That way, I’ll have said my piece and done my part in eliminating this nuisance from the world at large, and you’ll be enlightened and I’ll be less frustrated and we can both be better people for it.

Story-topping is obnoxious.  Don’t do it.

Person 1: Oh my gosh, I just finished my 20-page term paper and it kept me up all night.
Person 2: just stayed up for three days straight working on my thesis!

Person 1: I just ran my first 5K!
Person 2: Well, I just ran a 10K in half that amount of time!

When you respond to someone’s sorrow, joy, or any other situation with a story-topper, you essentially send the message that the person to whom you’re responding really has nothing to feel bad about, or gloat about, or whatever.  It sure is admirable that you’ve done what you’ve done… or it sure is difficult… but one-upping the person who just spoke doesn’t make that person feel very good.  In fact, it makes him feel rather stupid for ever feeling bad or good or whatever he felt in the first place.

Here’s where it gets on my nerves.  I deal with a lot of health issues.  I’ve been in a nursing home setting since March of 2013, though getting out quite soon may be on the horizon.  Remember how you felt the last time you came down with the flu?  I deal with that level of nausea almost relentlessly.  When I say I’m feeling tired, I don’t mean that a nap would be nice… I mean that, despite having just slept 16 hours, if I don’t lay down soon, I face up to two weeks of being unable to eat (feeding tube sure comes in handy), bladder spasms that feel like my insides are going to fall out, wacky heart rate and blood pressure, and deep pain in my arms and legs.

When someone you know has a chronic illness, chances are good that, after a time, they have learned not to constantly complain about their symptoms.  What’s hurtful is when someone says, “Oh my gosh, I know exactly how you feel… I had a cold last week…”  Unless your cold led to surgeries and hospitalizations and IVs and feeding tubes and ostomies… it’s a little bit hurtful to compare the two situations.  It’s not story topping in its purest form, but it is a way of making a comparison that minimizes what the first speaker has experienced.  When I say that I’m tired and need to rest, sometimes people say that they “wish they could afford to sleep as much as I do.”  Except that I’d really much rather be out there living a life that contributes to making the world a better place than sleeping all the time.  People also like to tell me, and this is where the direct story topping comes in, that THEY only slept FOUR hours last night and they’re EXHAUSTED but oh, they’re pushing through, but if I really need to go rest, then go right ahead… and whether or not they mean to do it, I then feel extremely guilty for needing to rest, knowing that I slept for 15 hours and really “shouldn’t” feel tired at all.  One person even got argumentative and would not cease insisting that her fatigue from only six hours of sleep was worse than mine.  Regardless of how tired she felt, why she felt tired, and how strong and capable she was in pushing through that tiredness to keep going about her life, reality for me is that if I do not stop and rest when my body starts to hint, then whole body systems will begin to shut down.

So, there you have my vent and my message… which is not to have pity on poor old me and my sick body, but to do your best not to make people feel bad for doing what their bodies, in whatever state they might be, need them to do.  That takes so many forms… in the autism world, an autistic person might need accommodations because of the noise level, or, some autistic people need to minimize sensory input and output by switching to typing instead of speaking.  Rather than making someone feel less-than because of their needs, it is so helpful to feel like others are willing to accommodate you… like you’re not a burden.

As far as story topping, the best solution I have is that I will cease to be a part of the problem.  When someone tells me a story of success or failure or sorrow or joy, I will do my absolute best to respond to the heart of the message rather than using their situation as a springboard for my own story.  The fact is that I cannot control other people or their responses, but I can control my own, and so I will make the choice to be one less story topper and end the cycle.

By the way, your achievement or sorrow or failure or joy is totally worth sharing and talking about, too.  It’s all about the timing, so, give the conversation a few minutes to continue on, and next time there’s a lull, jump in with your own story.  That way, BOTH stories have a chance to shine.

I Don’t Stand Up For Hate

Disney is a lot of things for me.  Sometimes it’s relationship.  Sometimes it’s expression.  Right now, Cars is pure comfort by way of familiarity.  It’s one of the only movies I can tolerate when I’m on high alert.  Why?  Because there is really no bad guy.  Yes, I’m 26, but I’m so incredibly sensitive that even the bad guys and scary situations in Disney movies are too much for me when I’m overloaded.  My other choice, which was on before Cars, was a nature documentary… no bad guy makes for no big emotional response makes for safe viewing, even now.

The very thought of communication has me about to go over the edge.  I had to call my mom for a quick question, and I thought I’d throw up.  The words are stuck.  My email is closed, and I had Facebook closed, too.  I put it back on but the moment I got a message, the throwing up feeling came back.   It’s been a long time since I’ve lost my words like that.

And so, I’m caught.  Typing is overload, yet, if I don’t type to you now, the experience will have passed and it is not one I can recall at will.  If I don’t type to you now, I’ll lose my chance of saying things that must be said.

I shared a post on my blog today that related just how important it is to be careful how we talk about autism, just how easily our kids pick up our perspectives, how easily they learn to hate their very selves, their innocent selves, when we say we hate their autism.  Someone commented on the post that I need to learn to accept others’ feelings, that my way isn’t the only way, that she doesn’t hate MY autism because I am high-functioning (which isn’t necessarily true at all times) but that she DOES hate her son’s autism because it robbed him from her.

She wasn’t looking for discussion or for me to change her mind.  She didn’t care that there is a way of looking at autism and life that will make things much better and brighter.  She didn’t even care that her beautiful boy would grow up to hate himself because of her perspective.  Nothing I said, nothing anyone could say mattered to her.  She just wanted validation.

I get that.  We’ve all been in a place where we express ourselves, seeking only a listening ear, but we’re met with mind-changers and that’s not what we wanted.

But her words struck me on a deep level.  I wanted out of my own skin.  I wanted to lay down my hopes and dreams of changing the world’s ideas about autism and give it all up and crawl back into a hole where I keep to myself.  In that moment, the level of ignorance I realized I face outweighed my passion and ability to change it.  You win, world.  I am surrounded by hate, hate, and more hate.  Hate, with qualification (“it’s not YOUR autism…”) is still hate; it’s not about accepting someone else’s feelings, it’s about refusing to accept hatred for a person’s, especially a child’s, way of being.  No, I will not embrace hatred.

I can point you to writings by autistic people whose autism expresses itself in all sorts of ways who are glad they are who they are and do not separate their autism from their person-hood.  I can prove to you that functioning labels are horrible, unhelpful things.  I can tell you all the struggles I’ve had and I can show you that when you dismiss me as “too high-functioning” to be able to have a seat at the autism table, you also, in the same breath, dismiss my nonverbal friends has “too low functioning” to have anything to say.  I can also tell you that my ability to type pretty words and big thoughts says one thing about me: that I can type pretty words and big thoughts…. that I struggle to cut my own food, cannot cross the street or a parking lot without help, and have little concept for time or managing finances.

None of it matters.  If you are dead set on remaining in your negativity, there is nothing I can say to pull you out of it.

But do me a favor, and keep your nasty, negative, hateful comments to yourself.  Don’t bring me down with you.  I may be a voice of advocacy, but I’m also autistic… which, for me, involves being highly sensitive and not the strongest communicator and less than super social.  Sometimes, my own autism makes me less of an advocate.  People seem to think that being an advocate somehow means I’m less autistic.  Not true.

So, I may take a breather, but I won’t stay down long… Cause, damn it, there’s a world to change out there and I won’t rest until it’s changed.  If I allow myself to be caught in the mire that is hatred for people’s differences, then I get so overwhelmed by it that I lose my sight for what matters.  I cannot engage with people who only want to spread negativity.   It can be so hard for me to have compassion for the hurt that’s beneath what is expressed as hatred, but that’s something I would do well to remember.  People don’t hate because it’s fun to hate; they hate because, at the root of that hate, there is deep hurt.  Respond to their hearts, not their anger.

I can take on the world–if ever there were a match, it’d be me with all my determination and spunk and gumption–but I will not put the responsibility of changing a single person on my shoulders.  I can change the world, but I cannot change an individual person.  I don’t have that ability.  That is between that person and God.  She has to get to a place of getting it.  I, too, was once lost in mounds of negativity, and I was not able to find faith and hope until I reached such a rock bottom that God was my only option, and He then became my hope and my source of joy.  I cannot fault a parent who is going through so much difficulty for not being in the same place I am.  Not everyone travels the same journey, and not everyone finds hope in the same way and certainly not at the same time.  We have to respect each other’s experiences.  Next time, instead of engaging (when all they want is validation, anyway), I will step back, wish them well, and say a prayer that their hearts and homes will be happy and that they will come to see the light..

…the light that is autism acceptance, in all its spectrum of colors and expressions and angles.

It’s a beautiful thing, and I’m sorry on so many levels that so many people are missing out on it.


A wise autism mom and autistic mentor told me:

“And you need to know–you may be the seed planted. But it may not be your place to be the water, the sun or the wind. So trust that you did your part.”

My Heart Will Fly Home

Having spent the last 13 months in a nursing home, I have gone through a gamut of emotions.  For the first two months, I refused to accept that I would stay there, and my desperation reached a pinnacle during a crisis in May of last year (which I have described here and in other writings and won’t take the time to rehash now because it isn’t the point; in fact, to spend time focusing on the depths of despair from my past is the complete opposite of my point in this post).  When I was discharged from the hospital stay that resulted from that crisis, I returned to the nursing home and thought I would return to despair.  I sobbed throughout the whole car ride (I wonder what the driver thought of me!).  When I got back, I began to unpack my things.  Though I had no intention and no foresight that it would happen, I became a new person sometime during that unpacking process.  I began the process sobbing, and by the time the bag was empty, so was I empty of any sense of despair.  Where there had been a feeling of being crushed, there were now two important things in its place… peace in my heart, and sheer determination in my mind.

From May of last year until January of this year, I had reached a sense of personal peace with my circumstances.  I knew that my mom goes far beyond having my best interest in her heart; in fact, she would lasso the moon, if I needed it.  My mom has her head on straight.  She’s quiet, one who takes things in.  She is wise, one who wrestles with those things to make sense of them and make them fit into the rest of her knowledge.  She is faithful, one who believes in God (though that is only in more recent years) and one who believes in the ability of her kids.  I trust her judgment implicitly.  So, when she told me, told my doctors, told anyone who needed to know that the “best place for me” was in the nursing home, I trusted her.  After all, it wasn’t as if we hadn’t sought out community-based services.  I had already applied and been denied.  We were told there was absolutely nothing for me “out there,” so I made peace with being “in.”  I was generally swept up in pursuing my Master’s (online, from the nursing home), attending social groups at an autism nonprofit we found nearby, and volunteering there, too.  I found ways to do what I loved to do and to further my professional career as an autistic advocate.  The nurses and aides at the nursing home treat me like their own family and help me to make the best of a less-than-ideal situation… but, I struggle with the doctor–his personality and his view on health and illness.  I worry about getting good care while under his care.  There was pain in my days; there still is pain, no small amount; heck, there will always be pain due to my medical issues.  And yet, the peace in my heart was the predominate force, and I found countless ways not just to bring joy along with me but to make it, ex nihilo, wherever I went.

Sometime in January, I ended up on the phone with an employee of the county’s Center for Independent LIving.  I can’t remember why i was talking to her; it wasn’t about community services to start, but that’s where the conversation led.  She believed that I should have been approved for those services.  She said that I couldn’t appeal as it had been too long, but that I could reapply, and then appeal if needed.  She gave me some pointers on where we might have gone wrong before (in fact, it turned out to be at the fault of the nursing home doctor failing to turn in her form!).  The employee of DON Services (Disability Options Network, which is the Center for Independent Living in my county) has been instrumental… she was the spark that got me thinking about the possibility of being on my own again.  That spark situated right between my shoulder blades.  I went through the various interviews with the state, and the spark grew into little buds as I considered things like working with staff again, having access to a shower, devising strategies to stay on top of the veritable plethora of medical supplies I require, and even the thought of not having to say goodbye to the Goose (my kitty) for any more than a few hours.  Whereas some of those thoughts would have struck terror in me in the past, the suddenly filled me with something new–hope.  The buds grew into wings.  

I realized that the last year has changed me.  Many young adults are ready to leave home at 18.  I was not.  Nor was I ready at 22, when I actually did.  But now, at 26, I have my wings… and I am ready to fly.

But what good is flying without a destination in mind?  When I think about being on my own once again, having room to spread my wings, I think about the ways in which I’ll put my peace, my determination, my strength, hope, joy, and faith into use.

With my peace, I will spread my wings of independence.  Whereas I used to feel terrified at the thought of being on my own, I now feel peace.  I realize that there will be upsets along the way, but I trust in my internal peace to be the guiding force.

With my determination, I will fly high and, simply, do it.  Determination to make more, be more, see more, do more is something I lacked.  I didn’t have a force within me to grow increasingly capable in ways other than academics.  I wallowed in indifference.  I have put my penchant for language into my Master’s, so that I can use my great love in a way that will allow me to find a niche of employment (in teaching online college courses).  I seek out professional opportunities, to write and speak and educate the world about autism.  There was a hole within me when it came to having dreams and wanting to pursue them; in fact, I thought myself unable so I dared not think on what I wanted to do.  Now, I realize that I am capable and I am determined to make a life for myself.

With my strength, I will fly to outward expression as I tell my story with with unashamed truthfulness about where I have been and no pretense–just candor–about God’s role in the person I am today.  I will do my part to make sure that my pain and struggle was not purposeless but something from which others will benefit.  I live out my life… unashamed about who I am, quirks and all, in the One who makes me who I am.

With my hope, I will fly to confidence in living not with knowledge of what the future holds but with full belief in God’s promise that it involves plans of prosperity (as the Lord defines it, not as humans with the total lack of foresight and imagination).

With my faith, I will believe in myself and my right to a place in this world, in my autistic brothers and sisters and their right to a place here, too, in my family and the rock we are for each other, and in my God who goes before and behind, around and inside, above and below, and most of all, within each of us.  I will seek to speak love, act in love, and be love with every word, action, and thought.  Those are not words I say lightly.

With my joy, I will fly high, with a life that sings a song… the drummer behind it might be a little different, and the tune might not be one you’ve heard before… but the harmonies are glorious and the melody is all my own.

I used to think that “home” referred to a place; I’ve always been extremely attached to my mom and stepdad’s house, which I have called home since I was just four years old.  As I got older, I came to think of “home” as my family… wherever they were, so would home be.  But now, I realize that “home” is something in my heart.  More accurately, Home is Someone within my heart, Whom I carry everywhere I go.  Home brings me peace with my circumstances, determination for my future, strength to be myself, hope for good days ahead, faith in myself and the people around me, faith in my Father, and joy… joy… oh, so much joy.

I cannot wait for what lies ahead.

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.