Go Big… or Go Home

This post would be the “go big” part of that statement… no-holds-barred, taking the issues head-on.  It’s posted in full on my Facebook page, too.

Over, and over, and over, I hear parents say that I don’t know what “real” autism is like (oh, I guess my 20-some years of outright suffering was just because I felt like it) and that I’m standing in the way of their kids getting what they need. They say that their kids have behavioral issues and can’t communicate, and I say, “I believe he can communicate, and I’m happy to help you in whatever way I can to make that happen.” No one has EVER taken me up on that… but many do go on to continue to throw attacks at me. The very last thing I want is for any child or family to suffer. Not only that, but I’ll do whatever I can to turn things around. People don’t just refuse the help, they continue to be accusatory… and you know, I’m starting to think that people want to suffer, that it’s become a martyrdom. I don’t want to believe that, and yet I don’t know what else to believe.

“Cure” has become such a dividing word. I realize that, when parents say they want a cure, they almost always mean something different than advocates like me hear in the same word. Parents mean that they want to minimize their children’s suffering. They don’t want a different child, but they don’t want the child to be in pain, without a way to communicate, and self-harming.

I don’t know any advocate who DOES want children to be in those situations. The problem is that the one and only way we are anywhere, remotely, even on track to think about finding a cause, let alone a cure, is by way of genetic testing and a prenatal test. Essentially, the idea is that an unborn baby could be tested for his genetic risk toward developing autism, and parents would have the choice to abort. We have this ability with Down Syndrome, and the reality is that over 90% of fetuses known to have DS are aborted. Why are we kidding ourselves into thinking we’d see anything different with autism? I very well may have never had the chance at life. I very well may not know some of my amazing friends, some of whom can speak and others of whom cannot.

The thing is that, had such a test been available in 1987, my parents might have learned that I would grow up to need a feeding tube, IV support, have an ostomy, and an insulin pump. They might hear that I would be in constant, intense pain, that I would spend a lot of time in the hospital, and that I would need multiple surgeries and deal with severe fatigue, autonomic issues, fragile skin, joint pain, and be almost unable to eat. But, no prenatal test has the ability to tell my parents that I would love kitties to the extreme, write books, speak at national conference, earn my Master’s, or find a way, despite it all, to live independently. They would not know that I would have a deep, abiding faith and uncrushable joy. The tests can tell you all the bad, but they cannot and will never tell you anything about the good–the person.

I don’t for a second stand in the way of easing suffering, but my faith and my belief that my life is worthwhile, even with all the crap my body throws at me, mean that I will not stand in support of a test like that. Please don’t throw accusations of “not knowing what real autism is like” or being a “quirky genius” at me, as if I don’t know pain, rejection, and isolation. I don’t want anybody to suffer, and it breaks my heart when I see kids in crisis. I’ll do whatever I can to make good on my promise to help anyone who asks. Know that when you support a cure, in its current realistic possibility, and the organizations who are working toward it, by default, you’re supporting a prenatal test. I hope that, in the future, we have a way to ease suffering without undoing life. Until then, I’m glad we don’t, because no pain makes the joy not worth it.

 

Tests could tell you that all of this would be a part of my life...

Tests could tell you that all of this would be a part of my life…

... but not about the joy of having the cutest nephew in the world!

… but not about the joy of having the cutest nephew in the world!

...and not about writing my own books!

…and not about writing my own books!

... and not about friendship like this, or the Disney trips it would involve!

… and not about friendship like this, or the Disney trips it would involve!

... and not about autistic community like this!

… and not about autistic community like this!

... and not about faith like this.

… and not about faith like this.

I’m Not Your Inspiration

Early in my public appearances in relation to autism and my work in the field, I heard one message repeatedly: You’re so inspiring!

Inside, I cringed.  When you meet someone with a disability and tell them that you’re inspired by their very existence, it sends some pretty gut-wrenching messages.  You’re telling that person that when you imagine being in their shoes, you probably wouldn’t find it worth getting out of bed in the morning.  You’re saying, “You really have it so bad that you’re a brave soul just for getting dressed and leaving the house.”  You’re insinuating that the person is somehow remarkable for doing very everyday things.

Listen, when I write or get up and speak, I’m just doing what I do.  Your work might be in an office or a school.  Mine is behind my computer and interacting with people.  I’m doing what I do best in a way that I hope will benefit others with the mind I’ve always had and the only body I’ve ever known… just like you do.  How would you feel if someone said that they’re inspired that you have the gumption to live a public being as short as you are, or that they’re inspired by your willpower to walk from here to there?  You’re just doing what you do with what you’ve got.

When you post a meme of a person with Down Syndrome accompanied by the text “the only disability is a bad attitude,” you undo all the work I do every day.  Disability doesn’t mean that anything is wrong with anybody.  It means that a person has a mind or body that works differently than the majority of minds and bodies in his society.  So, in this world, autism is a disability mostly by way of the fact that approximately 98% of people are not autistic.  But, if the “only disability is a bad attitude,” then why should a boss provide accommodations for a blind employee?  Just think more positively, Pete, and you’ll be able to do your work!  Why should a school have IEP plans?  A hip-hip-hooray or two is all that’s needed for any student to succeed!  And, to paraphrase the awesome disability advocate Stella Young, when a wheelchair user approaches a staircase, a big smile is totally going to turn it into a ramp.  Right?  

No.  Disability is a cultural construct, but that doesn’t make it less real.  Accommodations are absolutelytotallyandcompletely necessary.

How about the meme with a person with prostheses running and the statement that “your excuse is invalid.”  It reminds me of 10th grade gym class, when the day came, as it came every year, that we had to run a timed mile.  I had gym first period in the morning.  I’ve had type I diabetes since age 3 (and now approximately a zillion other illnesses), and that morning, my insulin pump site had a kink in it.  My blood sugar was 590-something, which is critically high.  A normal blood sugar is 70-100, though type I diabetics are well-acquainted with numbers far outside that range.  Above 350, I run IV fluids from home, and above 1000 is “incompatible with life.”  I was 970ish when I was diagnosed.

So, anyway, my gym teacher told me that if I didn’t run my mile that day, that I would get an automatic fail.  I ran it during my lunch period… which meant no lunch.  And I hadn’t had breakfast because of the super-high blood sugar, and I was still very high.  But I was ranked first in my class of 550 students… I wasn’t going to lose my rank because of a damn one-mile run.  So I ran it.

And, halfway through, I collapsed on the track.  The gym teacher didn’t even stop the clock and didn’t come over to check on me.  I finished. the. freaking. test.

Though the horrible quip about my excuse being invalid wasn’t on my mind at the time, isn’t that exactly the kind of behavior it’s supporting?  It’s saying to ignore any and all signs that maybe you should stop doing something, that maybe it’s time to take another direction, that it’s okay to say that something isn’t safe or otherwise okay in a given moment.

It’s also saying that disability is never an okay reason to say that I can’t do something.  It’s saying that accommodations are not necessary, that people should just try harder and do the thing.  If a person with a mobility disability cannot walk, it’s blaming him for it.  If an autistic person cannot speak, it becomes his fault for not working hard enough.  

Finally, it’s sending the able-bodied person the message that, dude, at last you’re not this effed-up.  If this seriously broken person can do the thing, then certainly you can do the thing.  It’s making you feel better about yourself and your circumstances by feeling pity for someone else… not okay.

I still interface with the public with respect to autism advocacy, but I’ve learned that there are things I can do and say that encourage people to be inspired by things other than my disability status.  I don’t ever want people to hear about my health battles or autism and think to themselves, my goodness, if that girl who is that broken can write and speak and get her Master’s and so forth, and I’m not nearly that messed up, then surely I can do it. 

What I do want is for people to meet me and think to themselves, holy mackerel, that girl is on fire!  She’s enthusiastic, kind to others, and passionate.  I want them to admire my faith, peace, hope, and joy and get the message that those things are theirs for the taking, too… and not pity my circumstances to feel better about themselves.  To encourage the reception of the right message and not the wrong one, I balance the time I spend talking about disability and the time I spend talking about other things, like faith and mentoring and passion.  I broaden my message to reach people on a basic level of humanity instead as often as I can, and I try to make the connection that autistic people are first people without any qualifiers.  Yes, autism is part of my identity, but my humanity comes even before that.  I have to both explain that autism makes my experience very different… and share the ways that it really doesn’t make me so different, after all.  It’s a balance, and not an easy one.  Following a presentation, I connect with people not just about autism but about almost anything… sometimes, I pull autism back into it, since that’s the reason most people meet me, but it’s not the absolute focus of every conversational exchange.

People still tell me they’re inspired, but it’s a very different message.  They follow the comment with things like “….you’re so passionate about what you do,” or “…your faith is incredible” or “…it’s awesome that you’ve followed your dreams.”  The last one, I still qualify… I don’t follow my dreams at all.  If I did, believe me, that I wouldn’t be here and I wouldn’t even be alive.  I follow God’s call on my life, which is utterly different than following my own dreams.  

But, that’s a qualification I’m happy to make.  I’m happy that the adjustments in the way I present and how I engage with people sends the message that the inspiration really has little to do with my disability… and everything to do with what I know to be God’s redeeming work in me.  I often say that if you’re inspired by anything I say or have done, then your inspiration is not me at all but God.  He’s the one who pulled me out of the muck and mire, out of the darkness, and into His marvelous light… and this amazing journey.

The View from the Mountain

I know that my recent post on Freshly Pressed (which, by the way, was downright awesome and I thank WordPress!) has drawn a lot of new readers who may not know my story.  Lesson one in Lydia writing is that everything has a back story.

The background is that I’ve been in a nursing home for fifteen months.  I have complex medical issues due to what we can best guess is mitochondrial disease.  Essentially, my mitochondria (which turn food to energy) suck at their job, so my body suffers from extreme lack of energy.  Some of the results of that are a clear connection, such as the fact that I can sleep for 15 hours and still be exhausted.  Others may take a moment of thinking… like, for example, my organ systems suffer the same lack of energy, so those that use the most (GI, endocrine, eyes, autonomic nervous system) don’t work very well.  I have a feeding tube, an ileostomy (like a colostomy except I don’t have a colon so it’s my ileum, or small intestine, connected to my abdominal wall), an insulin pump due to almost life-long type I diabetes, and an IV port.  My kitchen has almost no food, but every cabinet and drawer plus eight more drawers standing in the corner contain medical supplies.  Autism + having to manage THAT?  That’s why I was in a facility–I wasn’t able to do it.  We’re confident that I can at this point, so, I moved into my own studio on Monday… 

Now, I spent the last year or so writing a (non-autism-related) book about my testimony and my journey, and while I won’t go into detail here (yes, even I know, sometimes, when to skip certain details for the sake of brevity!), I will say that one of my big struggles as I concluded that book was unifying my story.  In my mind, I had an autism story, and I had a medical story, and I had a recovery-from-mental-illness story, and I had a faith story… but, I didn’t know how to unify those.  Who am I–Lydia–not from an angle, but straight on, as a single story?  As a Christian, my belief and my answer to that question is that the way Christ sees me… that is the one, true version of myself… that is THE story.  Autism and writing and recovery… those are all things that God either created me to be or allowed in my life and used them for good… but they cannot be THE story.  So, you come for an autism blog… but autism is not the end-all of who I am, and my life has plots in which autism does not play a part, so sometimes, you will get tastes of other things.  I come here, at times, to process, and sometimes, the processing involves other aspects of life, because I cannot just leave them out.

The last fifteen months have taught me lessons I never expected but yet desperately needed to learn.  One of the most life-changing things I know, and when I say know, I mean that I know it in the sense that I’ve lived it and not that I believe it’s true… I know (that I know that I KNOW!) that things like joy, and hope, and peace, and purpose, and freedom are not circumstantial.  At least, they cannot be if we want them to be abiding.  In order to bring those things wherever you go, into the valleys of life, they have to come from inside of you and not outside circumstance.  If you depend on external situations to be your joy, or your hope or your freedom, then you will lose them over and over again.  But if they, if He, is in you, then you will carry the one and only Source wherever you go.

When I’m on one of life’s mountaintops as I am right now, it’s easy to feel like I’ve reached a pinnacle. In some senses, some parts of my journey, have reached a beautiful closing.  I mean, I cannot contain the sheer joy at being in my own space into little black words on a white background.  Music is the best way to capture my emotion, and I play it constantly and sing and worship with every new song that pops on (which I couldn’t do in the facility much of the time because of my elderly roommate).  But, even from this miraculous view from the mountain, in which I look around at where I’ve been and feel the exhilaration of the closing of those chapters and the possibility at what lies ahead, assured that God has control over every new thing…  I have to remember that becoming like Christ is a lifelong process, and that, if I let Him, God can take me ever deeper in knowing Him. It’s a scary thing to pray to go deeper when you’re up so high, because going deeper involves things like discomfort and struggle. Still, So, even from the mountaintop, my prayer comes from one of my favorite worship songs…

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

(Hillsong United, “Oceans”)

 

Short and sweet and life-changing

I found myself doing my laundry in the kitchen sink (just necessities, because I was so exhausted from moving this week that I just couldn’t deal with machines and the wait time for washing and drying)… and in order to make it tolerable, I thought to myself, well, it’s certainly a fun sensory experience at the least! That’s how I deal with life. When something sucks, I find whatever sliver of fun or good in it and run with it… I hate taking my trash to the dumpster, so when I do, I make sure to get a huge swing and throw it way up, over my head (I hope it never explodes or anything while it’s up there!). I always hated scooping the little box, so I decided that I was digging for treasure as a kid. I even take it so far as to choose to focus on the aspect of changing my ostomy bag as a craft project… there’s cutting and putty involved, to give you context, so it’s not a totally random connection. No matter how much you dread a task, if you find SOMETHING in it that appeals to your nature and things you enjoy… well, you might find yourself doing a jig when you have to scoop the dog poop! Okay, maybe not, but a little chosen perspective can have a big effect on those dreaded little daily tasks.

If you’re laughing at me (and I wouldn’t hold it against you if you are!)… just remember that I’m digging for treasure, doing crafts, and playing in suds… while you’re still focused on bending, sweating, and stinking. I’ll keep my way…

 

Actually!

The whole idea of being defensive both plagues and confuses me.  From a very early age, during discussions or disagreements with my older sister, she will come out with, “Geez, you don’t have to be defensive!  You always get defensive!”  And, honestly, it’s meaningless to me.  Am I defending what I think is right?  Well, yes, but why wouldn’t I, when I believe what the other person is saying is wrong?  Why is it defensiveness and not just disagreement?

One issue is that I tend to appear more socially in-tune than I really am.  If I’m feeling decently (if I’m not, I’m extremely withdrawn and quiet), I’m bubbly and enthusiastic and full enough of spunk and gumption to share with any who might need to borrow some.  I think the total joy for everything that is life tends to make me seem younger; people often ask what grade I’m in, and I’m 26!  I am, truly, introverted.  I always liked the explanation that extroverts spend time with others so that they can be alone, while introverts spend time alone so that they can be with others, and I totally and completely fall into the latter category.  But, being introverted doesn’t mean that I don’t get really super excited about all sorts of stuff!  So, the desire to connect and passion for certain subjects tends to give others the idea that I have a good idea of what’s going on in social terms.

Except, I don’t.

I do a lot of checking before I speak.  Today, while we moved my stuff to my new apartment from the nursing home where I’ve been since March of 2013, I asked about 52,000 times what I could do to help.  Was I in the way?  Could I help?  How should I help?  Am I being lazy?  I often get blamed for “just standing there” but the truth is that I am often oblivious that others are doing something with which I can help.  My spirit is ready and willing to serve others, but I lack the ability to understand the social setting and how I can be a part of what I don’t even know is going on.

I also interrupt quite horribly.  Listen, I totally get that the tempo of conversation is as natural to you ask putting one foot in front of the other.  But just like some people have to work for every single step and go through a huge mental process of planning each footfall, so does conversation feel unnatural to me.  I have no idea when you’re finished, when you’re taking a breath, when you’re pausing to think… no idea at all.

So, when it comes to defensiveness, I can’t seem to find a pattern or an algorithm to figure out what is being defensive and what is disagreeing.

In the car last week, my sister was saying that the people in the small town where my nursing home is probably weren’t too thrilled when they cut down 12,000 acres of apple orchards and built a massive housing complex with million-dollar homes.  I totally agree.  Then, she said that the homes here were “like $100,000,” and, well, that’s where I got stuck, cause I’ve been all throughout all the streets of this town and I’ve seen maybe one home of that price.  Most are really nice.  My understanding of defensiveness to that point was something like “taking personal offense to a nonpersonal attack,” and when she accused me of “being defensive” about the housing, I got lost all over again… because I really don’t give a darn about the price of homes.  Like, at all.  I’ve thought about house prices all of three times in my life, so, why on earth would I act defensive about this?  I was arguing about a fact, and I don’t see what good it would do not to argue for what is true.

It’s totally not an attack on my sister whose good-heartedness far outweighs any nitpicking; this is just the freshest specific example, in which my sister happened to have a role, of a lifetime of not getting it.  It’s confusing.  Social stuff is CONFUSING.  What is all the more confusing is that, among the autistic community, I never get any of the flack I get from (some) typical people.  All autistic people do not socialize in the same way, believe you me.  We bonk into each other all the time with unique styles and misunderstandings.  But, we either say, “Can you not do that?” and the other person, with no offense taken, says, “Oh, sure,” or we just let it happen and don’t really attach any emotion or frustration to the other person’s oddity.  I have friends who will say hi to me 7 times in 24 hours without ever really wanting to talk further, and friends who don’t see the need for the niceties of chatting, and friends who chat for a while then disappear then jump back in where we left off two hours later.  Are these my style?  Nope.  Does it matter to me or annoy me that it’s theirs?  Not at all.

One thing I realize clearly is that I have to be careful not to put being right ahead of being kind.  I always say that, like any good spectrumite, my favorite word is “actually….”  Sometimes, in my quest for correcting wrongs, whether factual or matters of justice, I accidentally lose sight of the fact that a person is behind it.  And, when I hurt my friends, I feel really bad.  I tend to think that, since I would certainly want to know if I created a Facebook page with a grammatical error in its name, that the makers of the page would want to know that, too.  But, sometimes they don’t, or sometimes they feel really bad when they find out, or sometimes, it turns out that they’re well aware but Facebook makes it so they can’t go back and change it and now they’re stuck.  If the page is a one-person mission to spread joy to kids with illnesses by sending handmade cards, well, maybe I should keep my grammar editing to myself, because, maybe, just maybe, there are things more important that being right… even when it comes to grammar!

Don’t get me wrong, though.  I’ll still twitch when I see a possessive where a plural noun should be.

But maybe the NT social police could meet me halfway.  I’ll let your crappy grammar slide, if you agree to take the words “defensive” and “interrupt” out of your vocabulary, because telling me eight times in a day that I’ve interrupted, that I always interrupt, that I have to stop, that it’s rude… really just makes me feel bad about myself, kind of like it would make you feel bad if I edited every email you sent me or cut you off every time you mispronounced a word, ended a sentence in a preposition, or incorrectly attribute a fact to a source.

Cause, actually… that would be good for both of us!

 

Buts and Rebuts

*I’ve gotten several comments and such about this being “my son’s” or “my child’s” blog.  Note: Nowhere, in the whole post or in any of the subpages of my entire blog do I mention having a child.  That’s because I don’t have one.  I’m an autistic adult (yup, they have those!); these are my words.

 

When it comes to reason why parents are hesitant about–even outright againt–autism acceptance, there are a series of “buts…” that come up over and over again.  Despite what appears over the computer screen, and sometimes even in person, to be a remarkable facility with words, even despite the fact that I will soon hold a Master’s in English and creative writing, the reality for me and many other autistic people is that words are not my first language.  Trying to communicate my great-big ideas into the neat little packages of black print on a white background is like trying to force a beach ball through a key hole.  In the process, the beach ball gets punctured and ceases to be a beach ball at all, much like my ideas somehow deflate when they are packaged up all neat and tidy.  I know a lot of words, and I’m told I’m not bad at weaving them together, but this says nothing of the amount of energy and moments of frustration (those who know me in person are aware of how often I growl when I cannot communicate as I want) and how often I become so lost in the processing of language that I lose my train of thought altogether.  So, every time I see one of the “buts” come up, I desperately want to engage that person in conversation and try to help them get a bigger view of the situation, a zoomed-out perspective, so that maybe they will see the validity, the rightness, dare I say, of accepting autism.  The trouble is there are other endeavors that require packaging up my thoughts into neat little word-bundles.  Some are commitments, like school and work-for-pay and contractual writing agreements.  The next tier to which I attend involves post-writing, because expression, putting things out there, is easier for me than the dreaded third tier, which is communication.  Sometimes, I write posts and then fail to respond to comments, because the communication piece is overwhelming and hard and I simply have run out of word-bundling energy.  But that third tier is still hugely important, so what I want to do here is address many of the “buts” (reasons people can/will not accept autism) and rebut them.  This way, I am moving it to second tier, or expression.

*This is my fourth or fifth small edit to this post, but I realized how important it is.  I do NOT believe in a one-size-fits-all directive to how to work with autistic kids and adults, nor do I even believe in a one-size-fits-all ideology behind the choices that benefit such a wide variety of individuals.  Not every word I say here is likely to work for you, and that is fine.  You might find some words that do work, or you might just find that the spirit of the thing gives you a take on autism you haven’t thought of before.  Whatever works, take it.  What doesn’t, leave it, but please do so without attacking the people for whom it DOES work.   Taken as a whole, this post reflects the predominate spirit of autism acceptance (even if it does so imperfectly!).  It does not reflect everything I have always believed, and therefore I do not expect every person who reads it to be at exactly the same “place” as I am in writing it.  It also doesn’t reflect everything I always WILL believe; my experience has taught me how constantly beliefs and understanding are in flux and I know nothing more certainly than I know that my beliefs will, someday, change in some way.

1. But my kid isn’t high-functioning

Let’s talk functioning labels, shall we?  I’ll describe two people, and you decide which is high-functioning and which is low-functioning.

Person 1 cannot cut food using a knife and fork, has never held a full-time job, has received adult state waiver services, and needs someone to assist her in crossing the street and in parking lots.

Person 2 has a college degree, drives, and has flown across the country on her own.

Okay, that one was easy, right?  Obviously Person 1 is higher functioning… but they both describe the same person!  That’s my first point, which is that people are far more complex than this dichotomy allows.  It’s not up or down, yes or no.  We are human beings, and we appreciate it when you afford us a view that accounts for our humanity, which is not so simple as placing us in two categories.

People often see my writing and dismiss me as being “too high functioning” to know what autism is really like.  I find that those of us who are verbal are dismissed as not being able to understand, but, in the same moment, those of us who are nonverbal are dismissed as not having the ability to understand.  More and more, we are finding that people who cannot speak have a disorder of movement rather than thought; their minds are brilliant, but they have bodies that do not obey.  Many a parent who has thought her child to be incapable has gone on to find out that the child has remarkable abilities.

There are people whose autism expresses itself in every way imaginable, all over the spectrum, who stand for autism acceptance.  Many autistic people who are nonverbal and require intensive supports are included in this group.  Check out this post by Amy Sequenzia and this one by 12-year-old Emma Zurcher-Long, both of whom type to communicate.   We cannot exercise judgment or withhold our approval of someone’s personhood because of the way their autism expresses itself.  People whose autism is well-hidden also face intense challenges because of the way society is structured, and people whose autism is very obvious, of course, have gifts to offer, too.  All people deserve respect for who they are, regardless of how readily they fit into to society’s norms and thus how others perceive them.

Accepting autism does not mean that you have to accept that autism doesn’t present challenges.  It certainly does, but those challenges stem from the way society is structured and how society treats autistic people, not from autism itself.

Autism acceptance, at its core, means that you realize that your energies are better spent helping the child you have rather than constantly trying to shape that child into the child you think he should be, could be, or might have been.

 

2. But I don’t have access to services

Oftentimes, services intended to help autistic children actually harm them.  Think about the way many behavioral service providers force children to make eye contact.  They put their hands on the child’s face as blinders, or they take the child’s chin and turn him to face the therapist.  This is a huge violation of privacy.  Have a stranger do either one of the above to you; how does it feel?  How would it feel if you weren’t prepared for it and willing to do it?  Making eye contact makes it difficult if not impossible to hear and learn for us, at best, and at worst, it is physically painful.  These services also put a huge emphasis on speech rather than allowing a child to communicate in the way that is best for him.  They ignore sensory sensitivities.  Many “treatments” to “heal” a child’s body are unnecessary or even dangerous.  Children spend their entire early years in therapy rather than learning in the way that they learn best–through their senses.

Nearly thirty years ago, Tito Mukhopadhyay was an autistic child growing up in India.  He was completely nonverbal.  His mother, Soma, did not have access to disposable diapers, let alone professionals who could work with her son.  She learned about the way the brain works and used common sense to work with Tito.  Through these efforts, she developed the Rapid Prompting Method, in which she works with nonverbal or minimally verbal autistic individuals to work toward the goal of spelling on a letterboard or keyboard.  She has brought communication (not PECS, not single words, but true open communication) to many hundreds of people.  As for Tito, he is a published author who is able to write independently with pencil and paper.

Another example of an autistic child whose family chose to encourage his interests rather than do extensive therapy is Jacob Barnett, a teenager so gifted in math and science that he is on track to win the Nobel Prize.  As a child, his parents took his intense interest in playing with water and glasses and showed him how to make sounds by hitting the glasses and the science behind it.

Therapy is not all bad; please don’t twist my words.  But, not all therapies are the best route for every child.  Many therapies focus on making a child appear to be typical instead of helping him navigate the world in a way that allows him to be autistic.  And the absence of available services is not a reason to despair and lose hope for your child.  Your child can be successful (and success is defined individually)… and autistic!

 

3. But my kid can’t communicate.

Every. Single. Person… can communicate.  There are absolutely no prerequisites a person must meet to be ready to communicate with those around him.  This comes down to presuming competence.  I have met too many autistic adults to keep count who were assumed to lack intelligence and have no ability to communicate for years, and sometimes decades.  Their minds are fully intact, and they yearn for a way to show what they know.  For some, autism is not so much a difference in cognitive experience as it is a motor impairment.  For these individuals, their brilliant minds take everything in… but their bodies do not obey their minds, so they do not have a means of showing us what they know.

I meet parents who identify their autistic children, in various ways, as incapable… incapable of learning, understanding, and communicating.  We must believe that every person is competent.  We must presume they understand every word we say.  Yes, your child, too.  I heard from a parent who said that her son had a massive meltdown while she met with a new behavior specialist and went over her son’s history.  I asked if they had gone over the boy’s most troubling and difficult times.  They had.  I asked if the boy had heard every word.  He had.  Now, I ask, how might you feel if you sat for two hours while two adults reviewed all the worst, most vulnerable moments of your life, and you did not have the ability to speak out and explain what was happening from your perspective?  I’ve been in that situation… and even I, the most passive and least likely to burst with anger, person I have ever known, had a massive outburst.  If we are going to talk about a child while he is there, we absolutely must allow him access to reliable means of communication so that he can give his input at any time.  If this is not possible, the conversation must wait.

Some autistic kids are aggressive toward self or others, and much of this aggression stems from a lack of communication.  Instead of thinking that we must stop the aggression so that a child is ready to communicate, we have to think of the opposite… that a child must have a way to communicate in order to stop the aggression (for more thoughts on aggression, check out this post on the blog We Are Like Your Child).

There are many options available to introduce possible ways of communicating.  Many start with PECS, and while they are a very basic start, they do not allow the person access to true self-expression.  It is crucial to focus on literacy and words.  Time and again, we see that these non-speaking individuals have remarkable skill with words.  Encourage it.  Build upon it.  I see children who can spell flawlessly, yet they have no constant access to letters or a keyboard.  This is maddening.  I cannot fathom why it is so unusual to find a speech pathologist who has experience in AAC (Augmentative and Alternative Communication) and who actually encourages its use.

Find one.  Find one who believes in your child’s competence.  But first, you must believe it.  If you take nothing else from this post, take this: Presume competence.

 

4. But society won’t accept him 

“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg” (Paul Collins).

When most typical people think about autistic people, they think we’re abnormal.  There is this implication that normal is good, and abnormal is bad.  Think about what falls into society’s definitions of “normal” for a minute.  Things like mile-a-minute talking and general apathy come to mind… mild annoyances, right?  But, it’s also normal to put yourself first, work for a love of money, tell white lies, gossip about your friends, and change who you are to fit in with a crowd or find a mate.

So, not only are you “destroying the peg” to accomplish “normalcy,” but just what exactly are you trying to accomplish?  Why are those traits so sought-after that we destroy our kids to attain them?  We tell them to force themselves to make eye contact, even if it means they can’t listen at the same time, and even if it’s painful.  We tell them to “love what you love… just love it less,” quashing their passions and possibly their futures, since passions often lead to work for autistic people.  We force them to socialize the “normal” way… no matter how grossly twisted normal socialization is in our society.  We tell them that it’s better to fit in than with everyone else and wonder about your identity than it is to be who you are and love yourself for it.

Some autistics can “pass for normal.”  I can.  It’s exhausting, and by the end of a day of still hands and social conversations and watching people’s mouths in an attempt to demonstrate my interest in their words, I am physically sick and sometimes totally incapable of speaking a word.  I’ve reached a point where I value myself enough… more than that, I value my God who made me who I am enough… that I very rarely put myself through the forced hiding of all of my autistic traits for the sake of other people.  I don’t make noise in church or have a royal meltdown in the middle of a family event (if I can help it), but there is a difference between things I can refrain from doing in a moment (but can maybe do later) without significant deleterious results, and things like saying forget eye contact, or forget socializing for hours without a break, or forget walking down the sidewalk and just “dealing” with the train passing by without holding my ears… all for the sake of, “So I can look normal.”

I mean, there are so many bad things associated with being a woman in our society.  They’re moody.  They’re overly emotional.  They even get breast cancer.  So, why don’t we force all women to make themselves look like men and act like men.  That way, we can all save ourselves the upset of dealing with and thinking about traits of womanhood.  It would make all the men feel better.  The women, well, who cares how they feel?  Who cares that they can’t express their identities, the very way God made them to me, the way their genetic material makes them act and speak and be?

Autism is a neurological wiring of the brain.  Like genetics, it is not something that can simply be undone or done another way once it exists.  There are bad things associated with being autistic in our society.  But, by forcing all autistic people to act neurotypical, all we’re doing is saving the NTs the trouble of being made to feel uncomfortable as we deny autistic people the right to express their identities, the way God made them, the very neurology of their brains.

The solution… well, it’s a situation of the thing that is right is not the thing that is easy.  It may not be easy (ask any autistic person) to force autistic kids to cover their autistic traits (and that’s all you’re really doing with most therapies), but it is harder yet to step up and aim to change society.  But, if we believe that all people are equal, that all people are truly people, then it is the only right course of action.

 

5. But you’re saying this from a position of not knowing what “real” autism is like.

I call total and utter hogwash.  I also call disrespect.

Let’s say a professor walks up to a kindergarten teacher and says, “But you don’t know what real teaching is like.”

Or how about the owner of a golden retriever tells the dad of a beagle to “get a real dog.”

Does a novel writer tell the poet to write something real?

My experience of autism is my experience, and telling me that I haven’t experienced “real” autism does a few things:

First, it’s incredibly presumptive.  You walk up to me, hear me say something like, “You denial of my neurological status based upon your presuppositions of legitimacy is incredibly presumptive,” and immediately dismiss the rest of, well, everything.  It’s taking a moment in time, and by a moment, I mean a minute, yes, but it could also be an hour in which sensory stimulation is minimal and conversation topics stick entirely to the topics in which I am well-versed for verbal communication, and you isolate that moment as if it is illustrative of a lifetime of experience.  You presume to know me, all of me, because we’ve talked briefly about a preferred subject.  Take me to Target.  Cross the street with me.  Come with me to the mall, or to a party, or, here’s a good one… to the fireworks!  Even a change in the topic of conversation or meeting later in the day (when my tolerance is less) or when the moon is in the seventh whatever-it-is… and you will see a different version of me  The thing is that the stimmy, overstimulated, growling with frustration cause I can’t get the words out version of me is no less “me,” and no less indicative of my everyday experience.

Second, you deny me all the struggles I’ve been through to get where I am.  You deny the two years with very little verbal communication, the number of times I’ve been called rude or immature or disrespectful by teachers and professors, the three-month-long migraine I had as a result of student teaching (where they called me “socially isolated” and impossible to communicate with) which I was asked to leave after two weeks.  You deny me the five or six hospitals admissions as a result of the intersection of anxiety, frustration, overstimulation, anger, and twenty-one years of no one having a clue what I was all about.  You deny me twenty medications I’ve been through in an attempt to make my brain come to a place of being able to deal with the sensory world around me and the anxiety that used to overtake me.  You deny me the countless lost friendships and total heartbreaks of losing a lifelong best friend for reasons I could not begin to understand as a 16-year-old.  You deny me all the pain… not that autism has brought me… but that resulted of living in a world not made for me.

You also deny me the legitimacy of my overwhelming joy… The joy working through so many struggles, gaining skills, adjusting and compromising and relearning my whole way of looking at myself and the world.  But, you also deny me the joy of being a person who isn’t like most of the world… the joy of being included in a subset of people who are filled with talent, ambition, and a tendency to be incredibly gracious, kind, genuine human beings.

My ability to type well says absolutely one thing about me: I type well.  It says nothing about the rest of my life and the challenges I experience to fit into this world, nor about all I have overcome and my achievements in work and my merits as a person.  My experience of my autism is my own and only my own; I do not presume to know anyone else’s experience, so please don’t presume to dictate my own to me.

 

6.  But you’re not a parent 

So many books, blogs, and other sources of information are written or begun by parents.  I believe that when a child is newly diagnosed, the parent should first and foremost be referred to writing and information by autistic people.

Parents know their individual children better than anybody.  But, if your child goes through med school, it doesn’t mean you know what it’s like to be a doctor.  If your child is gay, you don’t claim to be the authority on experiencing life as a gay person.  Being a parent makes you the authority on your child, but not on his experience.  When it comes to autism, another parent can give you parenting advice, but she is not the person to turn to for information about experiencing life as an autistic person.

For that matter, neither am I, at least on my own.  When you read my experiences, you read MY experiences.  It is through the collective experiences of many autistic people, through the common threads of our experiences, that a parent can begin to gather a general idea of what it is like to be autistic.

I generally don’t offer much information about how to parent autistic kids.  The subtitle of my book (“An autistic’s thoughts on raising a child with autism”) touches more on the experiences I’ve had that might influence the way you view your child’s behavior.  I offer little direct parenting advice… because I’m not a parent.  I ask that parents give me the same respect by not trying to offer their thoughts on what it’s like to be autistic (unless, of course, they ARE autistic).

 

7. This is evidence of your lack of empathy for other people 

Let’s debunk this empathy thing, shall we?  In other words, let’s keep on beating that long-dead horse.

Autistic people do not lack empathy.  Every time I talk to my mom (daily), I ask her if she’s checked our long-haired kitty for mats in her fur.  I worry about it because if mats go undetected, they can end up pulling at the skin and hurting… and the thought of my sweet kitty in pain is more than I can take.  Yes, this is one very small example.  I could continue to list examples, from my own life and those of every other autistic person I know, from now until forever.  I can tell you about the young woman at my social group who handed over her round of cards so that I could have a turn at playing, or my Jewish friend who made me a beautiful Christmas card because she knows it matters to me.  We could be here all day, and all night, and so on, forevermore.  Autistic people DO NOT lack empathy.

People tell me that when I focus on the positive aspects of autism that I “don’t understand” how hard it is to parent an autistic child.  I don’t, but I know how hard it is to BE an autistic child; that knowledge doesn’t mean that I think it’s in anybody’s best interest to focus on negativity.

I often see parents post the gory details of their autistic children’s experiences for the world to see… details of changing bodies and meltdowns of massive scale.  How would YOU feel if your parents posted those details for the entire world to remember forever (AKA, on the internet, as we now call it)?  How would you feel if the whole world was in on the details of your first period or the most upsetting night of your life in which you lost all control?

In other words, how about some empathy for your child?

Typical people say that autistic people lack empathy, and yet it is typical people who continue to demand that we undo ourselves, our mannerisms, our comfort, what we like and how we express it, for their sake.  It doesn’t matter if it causes us pain or forces us to deny the way we were created to enjoy this world and our lives… you want us to be your way, and so it shall be.

And you say that we are the ones without empathy?

 

8. But my kid hates his autism.

I really do hate my schmoogiddybomp.  Don’t you hate yours?  Darn those smoogiddybomps… they really get in the way of so many things.

Wait, you don’t hate your schmoogiddybump?  Why on earth not?  Everybody hates them!

Okay, enough, but, let’s do a little dissection:

  1. You don’t hate your schmoogiddybomp because you don’t have any clue what on earth that is.  You don’t have an attitude or opinion about something you’ve never heard of.  Neither are kids born with an inherent knowledge of what the word “autism” means.  They only know what we teach them.
  1. If everyone around you, for all the life you’ve ever known, has hated their schmoogiddybumps, chances are good you’ll grow up to hate yours, too.  The predominating viewpoint that surrounds you has a really big influence on how you view things… and our kids are hugely influenced by how we talk about them, including how we talk about their autism.
  1. Many autistic kids know that they’re different.  This is where our words and interactions related to autism are more important than ever… because we have the ability to shape the way they view these differences.  We can teach them that they are the problem, or we can teach them that the world is the problem (and thus make them hate other people)… or we can teach them that people are good but fear what they don’t understand, and guide them to be advocates who help to change the world for the better.

 

9. But my kid has anxiety/epilepsy/anger, etc., that are ruining his life.

Some autistic people have anxiety.  But autism is not anxiety.

Some have epilepsy.  But autism and epilepsy are not one and the same.

Some have anger, mood disorders, GI issues, learning disabilities, and cognitive disabilities.  But none of those things are equivalent to autism.

Autism has a set of criteria that describe a person from a behavioral standpoint.  That means that we define autism from what other people see when they interact with an autistic person.  We describe their communication challenges, social differences, and reaction to the environment.  Interestingly, we do not ever consider what autism is like from the inside.  We don’t ask autistic people what they experience, in any way or at any point, when we seek to describe what it is.

There are some conditions that autistic people are more likely to have than their neurotypical peers.  Anxiety is a great example, especially the social variety.  Imagine how you would feel if your experience were like mine.  People love me and act very kindly toward me, then they flip out, scream, or totally shut me out of their lives without warning.  The reality is that there is a slow progression of frustration and inability to cope with my behavior or quirks or whatever it is… but, socially, I miss the cues.  I miss the cues to back off, to tread carefully, to check in and say, “Hey, am I bothering you somehow?”  So, the first cue I get that something is wrong is when things totally bubble over to the point of no return.  The person is absolutely furious that I have ignored all the “obvious” cues.  It doesn’t happen often anymore, due to a combination of having the right friends for me and the knowledge that I’m autistic… but, it’s happened enough times that I have an inherent anxiety toward friendships.  In short, the autistic experience of the world is that it is unpredictable, so we often function with a certain amount of anxiety toward that unpredictability.

But anxiety is not autism.  It is separate.  It can be debilitating, as can epilepsy and mood disorders and everything else… but we cannot blame those issues on the person’s neurology, because they are not a part of the neurology.  In fact, they are part of the fact that we live in a world that doesn’t allow for unique neurologies.  If people understood that a large sector of the population has certain social and communication traits, and if people could identify what it means for practical interaction when someone says they’re autistic, we could hugely reduce the cause of the buildup of social anxiety.  The problem is not my brain, it is the social constructs that surround me.

As far as medical issues… trust me, I know.  My autism stems from what is most likely a mitochondrial disease.  I have intense health issues, involving a feeding tube, ostomy, insulin pump, IV port, and spending the last 15 months in a nursing home.  A subset of autistic people (something like 5%) have mitochondrial disease… being that mito is progressive and without treatment, I could very easily make the jump to hating my autism.  I can treat my medical issues, and sometimes, when my body feels better, I am more social and more communicative, but this does not mean that I have treated or seek to “cure” my autism with medical intervention.  I believe that God makes beautiful things out of ugly situations all the time, and in many ways, though my medical situation is horribile, and being autistic in an NT world can be mighty tough, too… but, a creative, passionate, quirky-to-the-max mind and experience of the world is a beautiful thing that I relish in the midst of all the difficulty.  I won’t discount the beauty because it comes from hardship.

 

10. But I don’t want my child to suffer.

I believe, wholeheartedly, that you want the best for your child.  Every parent does.  So, even when I hear talk of cures and treatments and other words, I am completely sure that it comes from a place of wanting your child to be happy and healthy and whole.

He already is.  You can stop fighting.

When parents talk of curing autism, they mean that they want to ease the child’s suffering.  Autistic people do not suffer from autism.  Julia Bascom, over at Just Stimming, wrote this post about the deep joy we feel in our sensory world.  Sometimes, autism makes it harder for us to live in this world.  This comes back to changing the world, and not your child.  I also raise the point that your neurotypical brain also has certain things about it that make your life harder.  If we were to generalize (and trust me when I say that there are many exceptions on both sides of this), we could point out that NTs have significant struggles in terms of peer pressure, alcoholism, and even romantic relationships… things that many or most autistic people simply do not pay much mind.  But, then, think about my ability to catch grammar mistakes and connect with animals, and suddenly, it becomes clear that the NTs around me are the ones with the disadvantage.

Someone close to me recently said, “But… I think you don’t know what you’re missing!”  That’s an extremely ableist way of thinking; you’re saying that your non-disabled experience of the world is inherently better than mine… and that leads to some very scary places.

At this point in time, the only “cure” for autism on the horizon is the prospect of a prenatal test.  Down Syndrome has such a prenatal test, and, at least in Europe, a whopping 92% of children who would have had Down Syndrome are aborted.  Ninety. Two. Percent.  All the money spent seeking a “cure” to autism will have only the result that I likely would have never been born.  Also, think about the how-many children and adults who live with autism could have received services for the exorbitant cost that will ultimately lead to this prenatal test.  Instead of providing services, we’re finding a way to keep people from ever having the chance to live, and that is terrifying.

There is no other current possibility of an autism cure.  If there were, I believe that it would be downright impossible to undo the traits of autism without inherently changing the very person.  You would not have a non-autistic version of your child, but a totally different one.

In the end, I return to my original statement.  Accepting autism is not about accepting suffering and pain or denying resources and services to anybody.  If a therapy, a diet, a medication, anything at all… if it helps (without harmful the child physically or psychologically)… then by all means, do it.  Acceptance is only about accepting that you have a child, and that your time and energy and money is best spent helping that child be the most awesome him he can possibly be rather than attacking an integral part of who he is.

11. My child has autism.  Would you stop saying that he’s autistic?

Person-first language, popular in education circles, dictates that we refer to “people with…” as a means of emphasizing the person over the condition.  Identify-first language (“disabled person” or “autistic child”) is based on the idea that a person cannot be separated from certain aspects of his or her identity.

We say that we are female and American; we don’t say that we “have femaleness” or “have Americanness,” because these are traits that are constant and inform the essence of who we are.  Similarly, we “have a cold,” because the cold is temporary.  Autism is not temporary, and neither is it separate from my every single moment and experience.

Autism is like the flour in a cake.  Once the cake is baked, it is impossible to remove every grain of flour from it, because a chemical reaction has made the flour an integral part of the cake’s existence.  In fact, if you could somehow pull out every grain, you would no longer have a cake at all.  Take my autism from my body, my mind, my cells, my soul…. And you would not have “me” any longer.  Now, there are recipes for flourless cakes, but they require a totally different approach from the start.  There are “recipes” for neurotypical people, too, but they must start as NT.  Those of us who start life as autistic will always remain cakes that have flour in them.  Most behavioral therapies serve only to change the autistic person’s outward appearance, often at the cost of his ability to cope in the world.  It is not possible to turn an autistic mind into an NT one, just as it is not possible to take a regular cake and make it a flourless one.

Just as the Deaf community has a unique culture, so does the Autistic community.  Many choose to capitalize the A in Autistic or Autism when referring to our culture; I haven’t yet taken to this practice, but it’s not a reflection of my ideology so much as it is of my habit.  In our community, to call ourselves autistic is a source of pride, not one of derogation.

In the end, our community respects each person’s choice of language, but, the vast majority of us prefer identity-first language and seek to educate parents on why we speak and write as we do.  This is a key issue in the matter of autism acceptance, and almost serves as a litmus test or a flag that tells others of your perspective on autism.

 

There you have the “buts,” and my rebuts to each point.  The list is not exhaustive, neither is it perfect.  If you have additional ideas about “buts” to address and rebut, please get in touch with me, either via comment on this post or via the Facebook page for this blog.  I’d love to work toward a more complete list, but I need your help and a sort of meeting of the minds to get to that point.  As I said in the beginning and I will repeat again now, I will do my very best to engage in respectful discussion on any of these points.  What I will NOT do are two things: I will not go round-and-round and repeat myself, and also, I will not engage in discussion when it’s unreasonably stressful for me to do so.  I have a LOT on my plate; I’m moving back into the community after 15 months in a nursing home, I’m working on my thesis as well as taking a course that has me assisting in an undergrad course, and I’m dealing with my usual health issues, not to mention the stress of communication and the fact that it takes significant time and effort for me to engage in that manner.  I’m not ignoring anybody (unless you’re repeating yourself endlessly, then I am ignoring you!), and I’m not shirking any discussion… I’m just doing the best that I can with what I’ve got!  I always try (and will continue to try) to remain respectful and compassionate at every step–that I promise you.

That’s where we start: mutual respect and compassion.  Let’s build on that and see where we can go…

Meeting in person after two years of work and friendship online!

Meeting in person after two years of work and friendship online!

Autistic.  Respect. Friends.  Community.  Awesome.

Autistic. Respect. Friends. Community. Awesome.(Chloe Rothschild and I rocking age-inappropriate while celebrating her 21st birthday at Cedar Point)

 

Sondra Williams and I (Lydia) at OCALICON2013.  Sondra is an incredible mentor and friend who uses her experience to guide young adults on the spectrum as we seek to become advocates.

Sondra Williams and I (Lydia) at OCALICON2013. Sondra is an incredible mentor and friend who uses her experience to guide young adults on the spectrum as we seek to become advocates.

 

And then, the mentees go on to mentor... Chloe and Brooke (both autistic) in a moment of pure connection

And then, the mentees go on to mentor… Chloe and Brooke, of A Diary of a Mom, in a moment of pure connection

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.