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.



4 thoughts on “If I May Be So Bold

  1. Lydia, this is an excellent entry, and please believe me when I tell you that I respect you, that I admire you, that I wish my daughter would grow up to be like you. But — I hate autism. I don’t hate autism because it’s hard. Life is hard, and I have the scars to prove it. I hate autism because a parent is only as happy as their unhappiest child, and autism makes happiness that much more difficult to cobble together for my daughter. She is lonely and isolated, and I get depressed when I see NT children playing together in ways that my daughter cannot. In fact, I end up isolated and lonely. It affects our whole family, this thing called autism. People in our lives are kind and open. But the NT’s want to spend time with friends who understand them, who share their beliefs and desires. My daughter wants to watch Teletubbies videos on her iPad. Not only that, but NT parents want to talk about their children’s lives and those lives are so foreign to me, so beyond my experience as a parent of an autistic girl that I end up unable to participate socially. It’s not that anyone is particularly mean or unwilling to try. It’s not that I don’t focus on the positive. It’s that the positive is hard to find. I love my child — her beauty, her positivity, her laugh, her singing voice, her sense of humor, and her sly intelligence — but I mourn her vulnerability, her loneliness and her very frightening (to me) future. I don’t hate autism on purpose, to continue to make my life more difficult or to pass on that frustration to my daughter. I just cannot embrace a syndrome that handicaps my child.

    • But playing together like an NT child doesn’t bring joy to your child… just like dating and bars and dancing doesn’t bring ME joy. At 26, I’m supposed to want those things. I don’t. I don’t want my mom to hate my autism because I want different things. Just because your daughter may grow up to live a very different life doesn’t mean it has to be an unhappy life. She can grow up to embrace who she is and find joy in her joys. Your daughter is handicapped (disabled, is the term that is generally accepted) because of society. If we lived in a world where 67 in 68 people were autistic, then YOU, with your eye contact and nonstop chattering and “white lies” (I’m describing the typical NT, not necessarily YOU) would be disabled. Instead of wishing your child could be someone she cannot and will never be, why not seek to change society’s perception of her and help to create a more inclusive world, if only a microcosm, where she will thrive?

      • Hey, Lydia, I appreciate your response. I hope I’m not being antagonistic here, but the reality is we don’t live in a world where autism is the norm. And the main issue for me is that my daughter can’t be safe or independent in this world. I do work to educate and make aware those around us who are not part of the autism society. However, I see deficits that do affect my daughter’s potential happiness: I do, for example, see her watching other children, and it seems to me that she does want to join in, even if it’s only for a minute. And she can’t. She doesn’t know how. We’ve done structured play dates, and integrative therapy groups, and lots of social events that are sensory friendly. Still, she doesn’t know how to approach others, and I see her try and fail.

        She probably will be a happy grown up because my husband and I are working hard to make sure she has what she needs, and the state is working to provide therapists and other services. She has a sunny disposition, and is making excellent progress in controlling her anxiety when the unexpected happens or when a sound or sight she doesn’t want to experience presents itself to her. But she will always (I think) be more vulnerable and less safe than I want her to be. And that makes me sad.

        The big question for me is whether my daughter will be able to create and then carry with her the specialized drill you describe to make the holes compatible to her unique peg. Will she be able to advocate for herself as you do? Will she find a way to communicate her feelings, desires, thoughts and theories as you do? I sure hope so.

        In the meantime, it may not be autism itself that I hate — or what makes my daughter who she is. But I do hate the way our lives are made more difficult by this condition — whether that’s the fault of the syndrome itself, our society’s response to it, or my own attitude I don’t know.

  2. I cannot tell you how very much I appreciate thoughtful discourse on this subject. I feel absolutely no antagonism in your words, and I hope you know that I mean none with mine (if I do sound antagonistic, it’s not on purpose–I promise).

    The reality is that I am not always the advocate in-person that I am when I can type. When I’m face-to-face, in a moment of frustration, sensory overload, or otherwise finding myself with a need for the people around me to understand my autism and its relevance in a tough moment… I am more or less helpless. Please don’t think that I calmly and intelligently pipe up with beautiful words of advocacy. I’m more likely to scream, cry, or, most likely, just leave the situation. I have intense sensory issues… we were at the mall for 45 minutes and my whole body has waves of cold-heat running through it, my cheeks are bright red, just from the fluorescent lights. It’s very hard to know how much is medically-related fatigue and how much is sensory, but the reality is that the lights caused major problems years before the medical fatigue set in. When I’m at home, my parents’ house, and the dog barks, I just about lose it. MOM, SHE’S BARKING! Mom, MAKE HER STOP! It makes my entire system short-circuit and the whole world stops until that dogs STOPS BARKING. I don’t mind the little dog… but my ears sure hate her bark!

    The reason I create awareness and spread a message of love and acceptance in this format–my blog and such– is because this, typing, is my most natural means of communication. Your daughter may not type. Like me, she may be relatively helpless in spreading messages of advocacy when confronted with an autism-relevant moment in real life. But, I believe several things… one, every person has value. EVERY person. When I hear words like (and this is NOT what I heard you say, to be clear, but it is something I hear a lot)… “YOU are high-functioning so YOUR autism is well and good but MY kid is not HF so we need a cure for him,” what I hear is that we are attaching value–our perceived value of people’s lives–to a person’s ability to function. That scares the crap out of me and it is NOT okay. I have heard far too many messages from nonverbal adults with intense needs (read posts by Amy Sequenzia) who have gone on to say that they WOULD NOT change their neurologies. I also believe that our kids are not born with an inherent definition of autism… they know only what we teach them about it. Thus, I continue to focus on a positive message so that the next generation does not come to hate a part of themselves that, like it or not, they cannot be rid of. Another thing I believe is that we all have an inner advocate… maybe your daughter doesn’t speak or type but I know that we all have ways of contributing in this world… it’s simply a part of being human. Sometimes, it takes a long time and a lot of hard work for us to figure out where we fit i; I floundered until my early 20s. That’s okay. It doesn’t mean I was useless, and these kids who don’t have a niche yet, they aren’t useless either.

    I hate some of the situations autistic people are made to handle, too, in our world… but, here is what I KNOW: I was deeply damaged by trying to make myself into a round peg. I thank God for His work in me that I have been made whole, and, once again, square. Changing the world (drilling square pegs) is NOT the easy answer, by far, but it’s the right one, for me, and it’s the path I choose to take. We each have to take the path that is right for us, and I wish you all the best, truly, in finding that for your family. I am here to help in any way that I can!

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