Awareness versus Acceptance

potential trigger warning: videos and discussions of autism in a deeply negative light

April is a strange and often horrible month for Autistics. I’m not going to bother to go very deeply into why – it’s largely about the Light It Up Blue campaign and who sponsors it. Since 1989, April 2nd has been “World Autism Awareness Day.” Since at least the 1970s, the entire month of April has been “Autism Awareness Month.”

One could argue that more awareness was needed back in the 1970s, but when it comes to conditions today, I think this graphic about Autism Awareness Month and the Light It Up Blue campaign kind of says it all:

image: a picture of a house under a huge rock, with the following text: Can the three people that aren't aware of autism even see the blue lights from where they must live?

image: a picture of a house under a huge rock, with the following text: Can the three people that aren’t aware of autism even see the blue lights from where they must live?

So . . . we are all aware that there is this thing called autism and that there are these people who are autistic. Awareness for the win. Now it’s time to move beyond awareness to acceptance. April has been re-branded as Autism Acceptance Month since 2011.

It seems pretty simple and straightforward to me. Yet I see arguments.

No, no one (at least no one that I have noticed) is saying that autism and Autistics shouldn’t be accepted. But there are people who call the Autism Acceptance Month campaign divisive. There are people who say that it’s all just semantics and that both awareness and acceptance are pushing for the same thing. There are even, much to my surprise, some Autistic people who are saying these things.

So I thought I would write about the difference between Autism Awareness and Autism Acceptance, to help explain why I believe that it is more than mere semantics and why I believe that Autism Awareness alone will kill Autistics. Of course Autism Awareness is important — how can one accept something one doesn’t even know exists? But awareness alone is not enough. It is time to forget about those three people living under a rock and work instead for Autism Acceptance. Here is why:

Let’s look at a few short videos and articles, then discuss them from the paradigm of Autism Awareness and Autism Acceptance. If you have been promoting Autism Awareness and feel that I have misrepresented your views, maybe it’s time to consider joining us in promoting Autism Acceptance.

 

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This animation gives a (pretty darned good) idea of what sensory overload (quite common among Autistic people) can feel like.

AUTISM AWARENESS SAYS:

Oh! How horrible that must be to live with. I have a great idea! We could make a little village just for autistic people to live in. It could be far away from where the rest of us live and they could live in quiet happiness there! Wouldn’t that be wonderful? It wouldn’t be at all like institutionalizing them. It would just be a quiet place where they could live without all the things that we love — things that are so hard for them to handle.

AUTISM ACCEPTANCE SAYS:

Yes, our cities are too noisy. We should work on lowering the noise pollution we live with every day. That would be better for everybody. But since many things will still be overwhelming for people with sensory issues, and since it is so important that we accept Autistics and include them as welcome members of our society, we should make sure we work to remove any stigma associated with things like wearing noise-cancelling headphones in public or dark sunglasses, even on cloudy or overcast days. And maybe we can make more sensory time-out rooms in our schools or even public places like shopping malls. I think everyone could benefit from little pockets of quiet and calm in which to re-gather one’s self.

 

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A link to an article about the high unemployment rates faced by people with autism.

A link to an article about the high unemployment rates faced by people with autism.

AUTISM AWARENESS SAYS:

This is an unfortunate tragedy and shows why we need sheltered workshops so badly! Children living with autism become unemployable adults so it is an act of charity to give them something to do. Of course we can’t pay them as much as we pay non-autistic workers, but they should be grateful that we can find anything for them to do at all.

AUTISM ACCEPTANCE SAYS:

No one should have to work in a sheltered workshop, earning pennies a day, working like slaves and being told that they are not worth any more than they are getting paid! And it is ridiculous that the unemployment rate among Autistics is so high. There are plenty of things Autistic people are good at doing. We should re-think education and vocational training and we should encourage employers to give Autistics a chance at work. We should fight harder for workplace accommodations for Autistics and we should improve the disability and SSI benefits system so that those who actually are unable to work, even with strong accommodations and good attention to training, are not punished for being disabled by draconian rules and pitiful monthly incomes that are nearly impossible to live under.

 

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AUTISM AWARENESS SAYS:

Oh my God! It’s an autism tsunami! I am so shocked at how the numbers diagnosed keep going up, up, up! What a terrible public health crisis this is! We really need to get on the ball when it comes to prevention and cure of autism! And people are claiming that this is just better diagnostic procedures but I don’t believe that for a minute. How could the numbers spiral out of control like this just from better diagnosis? It has to be something awful we are doing to our children, probably something to do with vaccines or genetically modified food!

AUTISM ACCEPTANCE SAYS:

These increasing numbers are not that surprising when we think about how autism has always been here. Just last week on COSMOS, Neil Degrasse Tyson described Sir Isaac Newton in terms that made him sound very Autistic.  The increased numbers are not a reason to panic. Rather they are a reason to rejoice. Why? Because the more we are able to identify autism, the more chances we will have to understand it and the more we can move toward a society with room for every one in it. When we make changes that make life better for Autistic people, we are making life better for everybody — it has been true with the changes we have made to help people with every other disability so why would it not be the case with autism as well? Oh, and let’s look a little more closely at that study . .. what’s this? The news reports are pointing out the lower diagnostic rates among females and African-Americans but they aren’t mentioning that females and African-Americans who are diagnosed have much higher rates of intellectual disability.  This would seem to indicate that it’s harder for those populations to get diagnosed and children have to present with more severe symptoms before their autism gets noticed. That says that we still have a long way to go and it suggests that we want to see diagnostic rates go up in the future! We want to be able to find and help all those girls and African-American children who are not getting identified and helped the way they need to be.

 

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(I was going to put another video here, but it was too triggering for me to post and write about. And considering what else I did include in this post, that says a lot, right? So instead, I’d like you to think about the fact that we Autistics see things every day that make us hurt, weep, scared, angry. Think about what your life would be like if you felt like you had to hide from the news and newspapers to avoid seeing the awful things people say about you every day. And think about how you would feel if you were hiding from the media and still had to hear those things anyway, whether it was from overhearing conversations other people were having on the bus or in the doctor’s waiting room, things you saw in books that weren’t even about autism, things that popped up on television shows you used to think were fun to watch until they mentioned you in horrible ways, etc. That is what autism awareness brings — we Autistics get to see more and more horrible things about ourselves every day. The more society spreads awareness without acceptance, the more we Autistics suffer, just for being a part of a society that so clearly hates and fears us.)

 

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AUTISM AWARENESS SAYS:

What a tragedy this was! Autistic children are incredibly difficult to cope with. We have to have sympathy for parents like this because no one knows the suffering that parents of autistic children go through every minute of every day to raise their poor, hopeless children. Maybe it’s a blessing in disguise, since autism is so awful that the child was not going to have any good quality of life anyway. Killing a child is horrific, but it is understandable when someone hits the breaking point. We should do something to help these parents so they don’t end up turning to such an awful means to end their own suffering.

AUTISM ACCEPTANCE SAYS:

Murder is murder! Do not make excuses for parents who kill their children! Protect these children! There are no excuses for killing people. Autistics are no less valuable than non-autistics. Help parents. Help children. And never try to justify the abuse or killing of anyone by citing their disability as an understandable reason why someone would kill them.

 

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AUTISM AWARENESS SAYS:

Yes, autism is such a horrible tragedy! We need to raise lots of money, research how to cure it, and protect families from the devastation it causes.

AUTISM ACCEPTANCE SAYS:

What horrible things to say about Autistic people! Is that even true about the divorce rate? Oh, apparently it isn’t. Why would an organization that claims to be about helping families with an Autistic member say such horrible things? And why would people give money to an organization like that?

 

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And there it is. Don’t light it up blue this month. Don’t support organizations that talk about awareness while refusing to allow Autistic people to have a voice in our own lives and futures. If you want to do something to help Autistic people, consider instead supporting organizations like the Autism Women’s Network, The Autistic Self Advocacy Network, and the Golden Hat Foundation.

Don’t promote autism awareness. Do promote autism acceptance. Do promote ideas, groups, and people who support inclusion in the community, listening to Autistic voices, and addressing Autistic needs with the same dignity and accommodation that we strive to address the needs of all other disabled people.

It’s not just semantics. It’s life-or-death. Choose life.

 

Silencing Me With My Own Autism

Yesterday I had a small disagreement with someone online. It wasn’t even in the range of an argument — more of a bicker or a frustrated flouncing off sort of thing. It had nothing to do with autism.

Today, I learned that someone else went behind my back and sent a private message to the other party, to tell her that I am Autistic. So she could have “perspective.” This person seems to think they were doing me a favor — they were quite forthcoming in telling me they did so. And when I told them how inappropriate their action was, they didn’t even come close to apologizing. Instead they tried to justify it.

They pointed out that I had spoken publically about being Autistic (I have) and said that the other person had no idea that I am (not true. She and I had talked about it because she is raising two Autistic children.) She said that the other person is compassionate so it was important for her to know that I am Autistic.

What does compassion for my autism have to do with a small argument that was unrelated to autism? It sounds to me like a euphemism for “Sparrow doesn’t understand what she’s saying.” “She’s Autistic so she gets upset over nothing.” “You’ll have to forgive her because she’s Autistic and doesn’t know any better.” I mean, seriously … help me out here. Is there a way that a third party could privately go give “perspective” about my autism in a situation like that in a positive, empowering, non-infantilizing, non-pathologizing way? And if the things said about me were so innocuous, why did they have to be private? If you’re saying something good about me, by all means say it in public where everyone can see. (That was a joke but only half-way.)

I’m at a cross-roads.

I used to just try to be a good person and ended up leaving a string of enemies in my wake.

So I started being open from the beginning about being Autistic and, at least at first, it seemed to be doing some good. It seemed to be helping people to understand me better. It seemed to help me make connections with others. But that didn’t last very long.

When I am open about being Autistic, I am handing people a weapon to punish me with. This was not the first time that my autism has been invoked during a disagreement. I have ended up leaving so many communities because I was told that I was only disagreeing because my autism meant I didn’t really understand. I have been told I am having an unreasonable meltdown when I am calm and polite but the other person is agitated and using curse words. Anytime someone wants to dismiss my opinion or experience, they point out that I am Autistic, as if that trumps anything and everything. They remind everyone that I am not reliable, that my word means nothing, that I don’t understand anything.

Telling people that I am Autistic gives them the opportunity to understand me better. It also gives them the opportunity to dismiss anything and everything about me as irrelevant, deluded, pathological, unacceptable. No one has to provide a logical counter for anything I say because my words are Autistic words so they mean nothing. They are merely symptoms and can be disregarded.

So, as I said, I am at a cross-roads. I could keep doing what I’ve been doing . . . finding a group of people, getting to know them, starting to trust them and feel comfortable with them, then get the cold slap of rejection once I’ve been there long enough to start to think that maybe this time things will be different.

Or I could just accept that this is what will happen every time I try to socialize outside the little bubble of autism acceptance and stop trying to make friends with people who aren’t Autistic, especially with groups of people who aren’t Autistic.

I could stop talking about being Autistic, maybe even try to hide it. Let people think I’m just a little weird and carefully hide any traces of neurodivergence, maybe even come up with a fake screen name so people can’t google me and find the autism and use it against me anyway. I could pretend to be someone I’m not, as the required payment for being accepted into a group where no one is really my friend because no one really knows me.

The sad truth is that the average person out there, as soon as they find out that I’m Autistic, they look down on me. They view me as someone broken and lesser. It doesn’t matter that I can do calculus and solve astrophysics problems. It doesn’t matter that I can compose, perform, and record original music. It doesn’t matter that I can write books and have published one. It doesn’t matter that I can draw pretty pictures or do professional looking graphics layouts. It doesn’t matter that I work every day to learn how to be more kind and more polite because I am filled with loyalty and compassion and yearn to express it in ways that others can understand. It doesn’t even matter that I am a fellow human being.

Everything about me that is smart and strong and capable and kind and creative and determined and human gets wiped away in the face of my diagnosis. Because I am an Autistic human being, it is no longer quite so necessary to remember the human being half of that. I get reduced to a bundle of symptoms, an autistic psychopathology, someone who should be dismissed or explained away, not someone to listen to and definitely not someone whose words should be thought about or considered seriously. I become an inconvenience, a nuisance, someone who “just doesn’t get it” . . . . not because “it” is flawed in any way, but because I am Autistic. Anything I disagree with automatically does not need to be reconsidered or questioned in any way. Because I am Autistic, it is obvious that I am wrong.

I used to think I could change the world. I thought if I put enough words out there, if I put myself out there and let people see me for who I really am, if I did enough things that other people value . . . if I worked hard enough, people would see and change their mind and I could finally be part of the group, part of the world, one of “us.”

But I will always be “them.” If I disclose my autism, I am automatically one of “them,” and if I don’t disclose it, I will be one of “them” anyway, once others notice my differences and deficits and judge me as lacking.

I am tired. I will not change the world. All I will do is batter against it over and over until it destroys me. The world will remain unchanged. I am too tired to keep fighting. It is time to give up the battle and find the cracks through which I can flow to my own freedom. The undifferentiated wad of humanity is too big, too unyielding, too set on destroying those like me. It is better to find a niche no one else wants and sit quietly in a garden of my own making, alone. It is time to metaphorically go to the mountains and commune quietly with nature and leave the strife of people to the world of people, a world to which I never have and never will belong.

Do Not Despair

Turn your volume up – this is a poem in celebration of Love not Fear.

My Life Is Not a Tragedy

I am a person who tries my hardest to give everyone the benefit of the doubt. I realize I have a strong streak of suspicion in me, so I aim for the best possible view of others and attempt to judge them innocent until proven guilty.

Lately, the organization named Autism Speaks has worked really hard to provide me with that proof. Exhibit A: The  “Call to Action” by Suzanne wright (the co-founder of Autism Speaks) that said that I  and those like me are unspeakable horrors to our families who live in despair and depletion, ill and broken, because we are so awful to cope with. Exhibit B: the latest documentary film from Autism Speaks, titled, “Sounding the Alarm.” For an organization that tries to claim they are not alarmist, that is a pretty fishy film title, right?

Those of you who have followed my blog for a while know that I was an incredibly difficult child to raise. I’ll be honest: I pretty much did deplete my mother (although she has bounced back quite beautifully these days.) And you know I’ve had a hard life, with bullying, abuse, poverty, homelessness, and chronic unemployment. But you know what else? I would estimate that 90% of my difficulties in life were not caused by being born Autistic — they were caused by other people not coping well with who I am. People who don’t like the way I move, the way I speak, the things that catch my interest end up pushing me and bullying me and excluding me in ways that make my life miserable. Most of the “tragedy” of my life was completely avoidable if everyone around me had been encouraged to be a little more open-minded and discover the incredibly loyal friend or the hard-working and dedicated employee behind the quirky behavior and different way of viewing the world.

You see, my life only becomes a tragedy when someone else chooses to frame it that way. And that is objectifying toward me and people like me and I will explain to you why I feel that way.

Human beings — at least those living in industrial “Western” culture — have basically two ways to view lives. There are lives, plain and simple. These are what they are living, what their friends and family are living. Regular lives have ups and downs and long, welcome stretches of “boring” everyday stuff. There is no overarching framework because they aren’t stories; they are lives.

Stories are the other way to view lives. We view imaginary lives that way all the time when we watch television and movies. We also frame certain people’s lives as stories when we write about real people in books or magazines. Stories do not have long stretches of everyday “boring” regularity, because stories are about heroes and villains — stories are drama and drama is shaped by our theatrical forms that box everything up as Comedy or Tragedy.

You’ve seen the masks, right? The iconic symbol of the theater with one mask laughing in hilarity and the other weeping openly. This is how we frame stories and this is why people who want to box me up and objectify my life so often strip all the complexity out of my “story” and try to fit it into comedy (“look at that ridiculous ******!!”) or tragedy (“Poor thing, she’s so pitiful. It’s inspirational to me that she even gets up every morning and goes on living day after day!”) People who want my life to be a story and not just a life are required to objectify me and amputate most of my actual life to get the essence of me into that little box they need to put me in so they can make their point.

Autism Speaks’ point is that autism is evil, Autistic people are a tragedy, families of Autistic people are broken on the wheel of autism . . . oh, and give us lots of money. They try to claim that I can’t be upset about the things they say because they aren’t talking about me, they’re talking about “those Autistics.” You know, the cardboard cut-out caricatures of Ultimate Tragedy that never mature beyond infancy and thus grow up to be Useless Eaters and Burdens to Us All. I am “too high functioning” (meaning I continued to grow and develop and change throughout the course of my life and am now able to type words and lift a spoon to my mouth unassisted) and I am not who they mean.

Well, if they aren’t talking about me, they need to stop counting me in order to make their massive “tsunami” declarations of millions and millions of us who are struggling and suffering (unless you give lots of money to Autism Speaks, of course. That will somehow magically stop our suffering . . . . well, no, it won’t. So they need you to give them some more money. Don’t stop yet! There are still MILLIONS AND MILLIONS of Autistics out there! Tragedy! Alarm! Crisis! Pandemic! . . . keep that money coming.)  If there are so many millions of us, then they *ARE* counting me and people like me so how dare they say I have no right to be distressed by their rhetoric about ME?

Would you like to know how *I* read the story of my life?

Sure, there are hard times. I struggle a lot. But I also accomplish and achieve a lot. I would like less struggle. I would like a LOT less struggle. But I would not like no struggle at all, because having something to push against adds to my strength. I want to have some challenges so that I can have some accomplishments. I want to have some difficulties so that I can have some growth. As Robert Browning said, “a man’s reach should exceed his grasp”. I would like my grasp to come a lot closer to my reach (wouldn’t we all?) but I want there to always be something just brushing my fingertips, tempting me to press on. I never want to fulfill all my dreams, unless I grow new dreams in the meantime. I want there to always be someplace new to go, something new to strive for. I would like those things to be new skills, new arts, new travels and people. Right now, some of those ungrasped things are more fundamental. Right now, some of those ungrasped things are unmet needs, not unlived dreams. There are hard times and things I would like to improve, but that doesn’t make my life a tragedy.

If I had to define my life in one word, it would not be “tragedy.” It would be “joy.” I have an abundance of joy in my life. I have always had joy in my life, even during the hard times. I believe I could be left sitting in a garbage heap and manage to find something beautiful there.

Suzanne Wright painted her picture of what our lives are. Let me paint a few vignettes of my own, one, single, Autistic life:

It is summer and I am walking. The brush is scrubby and dry and tiny black-and-white checkered lizards bake in the sun on flat rocks. Raptors wheel high in the sky, nearly invisible against the glare of the sun. The trail I’m on dips lower, into a grove of evergreens, and suddenly I am wrapped in the sound of scores of little birds, singing in the trees. A swarm of dragonflies seemingly materialize from nowhere and I stop walking, transfixed by the beauty of the sun glinting rainbow sparks from their diaphanous wings as they circle lazily around my head.

I am tucked away in a dusty corner of the library, reading. What am I reading? It must be a comic book of some sort, because I read intently, then suddenly burst into laughter, nodding my head and shaking my hands with excitement and happiness. Then I go back to intently reading with furrowed brow before bursting again into childlike laughter. Curious to see what is causing such reactions in me, you draw nearer to discover that I am reading a collection of dozens of mathematical proofs of the Pythagorean theorem.  That beautiful moment when all the pieces fall into place is so glorious and profound to me that I am helpless to do anything but laugh with delight when I get to that point in each mathematical proof.

I have a new musical instrument and I am exploring the sounds it makes. I am comparing it to every other type of instrument I have played before — and there are many — to see how it is similar and how it is different. Within five minutes, I play my first simple song. Within five days, I am playing as if I have been working with that instrument for months. I do the same things with languages — writing letters and poetry in grammatically correct Swedish three hours after I opened the parcel containing a Swedish-English dictionary and began studying the sentence structure of the language. I do the same thing with anything that is based on patterns because I am a pattern thinker. I do not think in words. I do not think in pictures. I think in symbols and patterns. Any process or thing that succumbs naturally to pattern thinking is an easy delight for my pattern-seeking mind and heart.

I am exhausted, so I lay down to listen to music and maybe sleep for a couple of hours. My cat gets excited to see me recline because I am creating his favorite place in the whole world — I am becoming his cat mattress. He runs to me and climbs on top and we adjust ourselves to find the spot of maximum comfort for both of us, the two of us so in tune with one another that words are unnecessary. We go beyond communication; we commune. I wrap my arms around him and bury my face in his kitten-soft fur and he purrs and wraps his paws around my head. We lay there together, two souls breathing as one, rejuvenating each other with the priceless love and trust that connects our gentle spirits.

This is my life. This is not a tragedy. I am not a statistic. I am not a pawn to be used to manipulate you into giving money to a charity that gives about 4% of its income to actually helping Autistic people and our families and gives 44% of its income to researching ways to wipe me and my kind off the face of the Earth. (And another 22% to fundraising efforts that paint us as a tragedy so that they can bring in more money to find more ways to create a world where people like me are extinct.)

complex

My life is not a tragedy. My life is far too complex — and far too beautiful — to ever be mistaken for a tragedy. This is why Autism Speaks does not speak for me. I am Autistic and I can speak for myself. (And on those days when I can’t, I can write for myself. And on the days when I can’t even do that, I’m still not a tragic pawn to be moved across the board of someone else’s political and financial agenda.)

I am not a horror. I am not a destructive force. I am not a tsunami or an epidemic. I am a human being, living my complex, messy, sometimes boring, sometimes gloriously beautiful, everyday life.

My life is not a tragedy. I am a human being and we are too complex to be reduced to such abject objects. See us . . . really see us. We are priceless beyond measure. We are not tragic. Please do not assist any person or organization in attempting to reduce our beautiful and complex lives to little more than a theatrical stage show.

Our lives are not tragedies.

Inspiration Porn

I was turned into inspiration porn yesterday.

Inspiration porn is when someone takes an image or story of a person (who they have judged as lesser than them in some way) going about their every day life and either fawns over it in order to make themselves feel inspired by someone else living their life despite circumstances the viewer deems intolerable or it is used to shame others for not living up to their full potential. If you want to see a few examples of disability porn, one of the most common forms of inspiration porn the internet, along with some deconstruction about why those instances of inspiration porn are offensive to disabled people, check out these links:

Inspiration Porn: Where Gawking, Guilt, and Gratitude Meet

Cracked Article is Unusual Type of Inspiration Porn

Not Your Inspiration

I was turned into in-person inspiration porn against my will. I ended up as Poverty Porn (although I think it started as simple marveling at my physical endurance. But it turned nasty really fast when I was unwilling to respond in whatever manner the other person felt was the correct way to respond), not Disability Porn, but they are cousins and I have been subjected to both many times. And I hate them both.

But Poor People Are Spiritual and Happy!

The backstory: the temperature was below zero and the ground was covered with ice and snow. I had to go to the doctor and could not reschedule or I would leave myself without necessary medication that I could not get extended without a visit (and I would have needed to go out in the inclement weather to go to the pharmacy anyway, doctor visit or not.) The temperature was dangerously cold (my fingertips hurt so badly when I got home that I just sat and wept while they warmed up.) and my car has not worked since May, so I decided to risk bicycling on the packed snow in order to limit my exposure to the cold (a 10-15 minute ride versus a 45-60 minute walk.)

It sucked. But at the same time, I wasn’t doing anything *that* impressive. While I was out, I saw two other cyclists on the roads. (Though I’ll bet they had warmer gloves than me.)

When I arrived at the office, a woman in the waiting room got very excited, “you bicycled here? You’re amazing!” I felt uncomfortable but wasn’t sure why. I just said, “no, I’m just me.”

She persisted, “no! Most people would not bicycle in this weather!”

I replied, “They are smart.”

She said, “but you did! You are so amazing!”

I really started to squirm. “No. I am impoverished.”

“But you’re still so amazing! You bicycled!”

“I had no choice. I had to get here. I’m poor. I had no other way.”

“No! You’re amazing!”

I told her, “It is stupid to bicycle in this weather, but I am too poor to have any other choice.”

That didn’t stop her. “But you’re so amazing! You are really amazing! How you got on your bicycle and came here in this weather! I am so amazed by you!”

I couldn’t stand it any more. She wasn’t going to stop. And now she was TOUCHING me on the arm! TOUCHING me! I really hate it when strangers touch me. And she was making some kind of glory out of the limited options I have in life while she was TOUCHING me. And seeming to insist that she wasn’t going to stop until I agreed with her that I am “amazing.” She was trying to force me to play her script. She was not seeing me as a real human being who might have my own script that differed from hers.

I am amazing for going to the doctor? I am amazing for getting there the only way I could? I am amazing for being so poor that my transportation choices are sometimes dangerous? I am amazing for continuing to live my life the best I am able instead of giving up, laying down, and dying? I am amazing for . . .  what? For living my life? Is she amazing for driving her car to the doctor that day? She did the same things I did – got up, got dressed, went to the doctor. Because I am too poor to have a car, I am amazing for doing all the same things she did? Because I am … lesser? struggling? more limited in my options? I am amazing? Because she can’t imagine living like I do, I am amazing? Because she would … what? kill herself if she had to live like I do?

I don’t know what she was thinking. I kept telling her “no” when she said I am amazing. I told her it was not a safe thing to do. I told her I had no choice. I told her it was not what I would have chosen to do if I had not been forced into that position because I am poor. And she kept forcing her judgment on me. She was feeding her own need to be amazed at an inspiring person and in the process, she was starving my own needs for dignity, respect, and not being objectified into some kind of pornographic symbol of inspiration because I am alive and trying to live my life as best I am able with what resources I have. I told her no and no and no and she kept insisting (and TOUCHING me) until I wanted to bite something.

“It makes me really uncomfortable when you treat me like I’m some kind of hero for living my life. Please stop saying I’m amazing for coming to the doctor the only way I was able to.” I told her. Being this polite took a lot of self-control.

“Oh. So I should shut the hell up?” She said.

“Well . . . . yeah.” I responded, kind of at a loss for what I was supposed to say.

So she retreated and shot me angry looks (and when even I can recognize the emotion in them, they are VERY angry looks) until she was called out of the waiting room.

I have no idea how I should have dealt with it. Ignoring her wasn’t an option because she wasn’t going to give up until I gave her whatever response she was looking for. (What? “Why yes, I am so terribly, terribly amazing. So perceptive of you to notice my magnificence.”) And she was TOUCHING me.

Don’t do this to people. It is fine to be inspired by others. It is fine to be inspired by others who “took lemons and made lemonade.” I find Viktor Frankl’s book, Man’s Search for Meaning, so inspirational that I have read it a half dozen times. Frankl was an inmate in a Nazi concentration camp and he wrote of the things he learned about the human spirit and the meaning of life when he was imprisoned and watching how some people withered while others thrived, even in such an unlikely setting. He was “on fire” when he wrote that book — he wrote it in only nine days. And he was clearly inspired by the strength of the human spirit. And I am inspired by the words he wrote. And I try to live my own life the same way: reaching out to help others, finding meaning in my own suffering by using the lessons I have learned from pain to try to help others avoid pain when they can or cope with pain when they can’t avoid it.

But do not tell people they are inspirational when they are doing ordinary things like going to the store, riding horses, changing their baby’s diaper. If they have a different body or a different brain that makes them do those sorts of things differently, it is diminishing to use them for inspiration. If they have to do things differently because they are too poor to afford the things that make life easier, it is diminishing to use them for inspiration. When a spinal cord injury forces a person to learn how to put their socks on with their teeth, it is appropriate for their loved ones, who have been by their side through all the hard work, to applaud them. It is objectifying and insulting for strangers to take a photograph of that person putting on their socks and add a caption like, “what’s your excuse?”

I have watched people tell a blind woman she is inspirational because she could use a bill reader to count money. I have watched people tell a blind man how inspirational it is that he can type. Yes, really. I have been told that my poverty is so inspirational because poor people are closer to God and they wished their whole church were filled with people like me. (If poor people are more noble, it excuses others from the need to help them become not-poor.) The highpoint of my life as an object of inspiration pornography was the man who told me, “You are an inspiration to me because you continue to live your life even with the limitations and difficulties you experience.”

I am an inspiration because I continue to live my life.

I am an inspiration because I have not committed suicide?

And when I, courteously, pointed out that this is what I had just been told and that it made me unhappy to be told that, I was no longer inspiring. I was ungrateful. I “can’t take a compliment for what it is.” I “misinterpreted his words, twisting their meaning and throwing them back in his face.”  But he was not complimenting me. He was not. It is not a compliment to be amazed when someone else is living their life in whatever way they are capable of doing. It is an insinuation that their life is so bereft that anyone else would have the good sense to just die (or kill themselves) if they were in the same situation.

I am strong every day. I am brave every day. And, yes, I am an amazing person. But when someone tells me I’m strong and brave and amazing for what I do to live an ordinary life — when I am branded as inspirational for doing what everyone else is doing — I am set apart. I am alien. I am excluded. I am objectified. I am made into inspiration porn. And the things I do that really are strong and brave and amazing and inspirational are erased. It doesn’t matter that I’ve written books, recorded albums, firewalked, travelled to 47 of the 50 states, got a perfect score on the writing section of my GRE, taught myself a half dozen languages. None of that matters, because I WENT TO THE DOCTOR ON A COLD DAY! I am amazing.

Be inspired that I have kept a heart full of love despite years of abuse. Be inspired that I find the courage to come out Autistic, even in places (like online) where I could conceivably hide it and pretend to be someone I’m not. Be inspired that I spend so much energy trying to make the world a better place. That’s inspiring! I want people to be inspired by my writing. I want people to be inspired by my choices to live a loving life that serves others and strives to add good to the world. Don’t be inspired that I went to a doctor’s appointment. Don’t be inspired that I got out of bed this morning. Don’t be inspired that I haven’t killed myself. What are you saying about my life if you are inspired that I haven’t ended it? What are you saying about my perceived value?

If you are starved for inspiration, go look into a mirror. I haven’t yet met a human being who didn’t have something magnificent about them. If you really need to be inspired by someone, start at home. I can guarantee that you are an inspiring person. Seriously. Take a good, long look inside. It’s there.

When my partner tells me, “you’ve had such a hard life. It’s not fair. You’re such a good person. I admire your strength,” those are encouraging words of love. It is an intimate exchange. It feels good. When a stranger tells me that I am amazing for going to my doctor’s appointment in bad weather, it is diminishing and humiliating. It underlines what I lack (warm transportation, financial stability.) It calls attention to the different way I am forced to do things, due to limitations I face. It widens the gap between me and them. It “others” me. It is inspiration porn.

Autistics Speaking Day 2013

“If you know your history,
Then you would know where you coming from,Autistics Speaking Day 2013 Participation Badge
Then you wouldn’t have to ask me,
Who the ‘eck do I think I am.”

- Bob Marley and the Wailers, Buffalo Soldier

Autistic people have a rich and colorful history. Autism has only been a diagnosis for about seven decades, but so much has happened in those years. We have been the target of Nazi eugenicists, we have been revered as saints and demonized as changelings — impostors left by the elves or the gypsies while the real child was spirited away in the night. We have been “treated” to unspeakable therapies administered by people who thought they were helping us as well as by people who thought there was no human “in there”  to help. We have been plot points and two-dimensional characters in scores of movies and television shows (and had a few really great movies made about us as well). Our mothers have been blamed for causing our existence by not loving us properly. Genetics have been blamed. Vaccines have been blamed. Vitamin D, air pollution, noise pollution, so many purported causes that I wouldn’t be surprised one day to see a headline announcing that breathing causes autism.

We have had our heroes and celebrities: some — like Temple Grandin, John Elder Robison, Daryl Hannah, Dan Ackroyd —  well-known to the mainstream. Others — Judy Singer, Laura Tisoncek, Michelle Dawson,  Jim Sinclair — mostly only known to our community. We had a contestant on America’s Next Top Model (Heather Kuzmich), a contestant on American Idol (James Durbin), a contestant on The Amazing Race (Zev Glassenberg), and a contestant for Miss America (Miss Montana, Alexis Wineman). We have our symbols, like the rainbow spectrum infinity symbol, and others have created symbols for us that displease many of us, like the puzzle piece, often depicted as a gaping hole in a child’s head, meant to symbolize that we are lacking some basic element of humanity. We have our books — Loud Hands, Aspergirls, Pretending to be Normal — and they have theirs — The Ethics of Autism, The Empty Fortress, Defying Autism.

We have our tragedies: The Judge Rotenberg Center, Alex Spourdalakis, Melissa Stoddard, Daniel Corby, Jori Lirette . . . oh, so many more names, so many more lives cut short. Too many to name here.

And we have our victories: The closing of Willowbrook, the passage of the ADA, the appointment of Ari Ne’eman to the National Council on Disability . . .

In light of all this history, history I’ve only barely begun to touch upon here, it is fitting that the month of November is now Autistic History Month.  This new celebration was announced to mixed responses. Some were elated (“WHEN is this world going to give credit where credit is due? Autism is inherently so human. It is time people recognize it every where.”) and some were baffled (“Autistic “History”? That doesn’t make sense. Autism hasn’t been a recognized diagnosis long enough to have any real ‘history.’ We definitely need more Autism Awareness, but I’m not sure using a term that will make people think we’re some sort of ethnic group is going to accomplish that.  I would also avoid terms like “Autistic Pride.” You want to humanize people with autism, not set them apart as a fringe group.”).

A 17-year-old autistic man asked: “I have a question: What exactly is there about Autistic History? I try to think about it but can’t think about anything off the top of my head.”

And this is exactly why we need Autistic History Month: our own people do not know their history.

Can you imagine an African-American teenager who didn’t know who Martin Luther King was? Or what Jim Crow laws were? Or anything about the Civil War and the Emancipation Proclamation? What about a Jewish teenager who knew nothing about Dachau, Anne Frank, or the founding of modern Israel? Would you be sad to hear about Deaf teenagers who didn’t know who Helen Keller was? Had never heard of Galludet University? A Blind teenager who had never heard the story of Louis Braille?

But there are so many Autistic teenagers who have no idea who Bruno Bettelheim was or how much pain his theories brought to countless families for decades. They don’t know who Judy Singer is or what word she has contributed to our language, to the culture of Autistic people and all other non-neurotypical people. They have no idea what makes some of us call Robert Kennedy one of our allies. They question the very idea that there could be such a thing as Autistic history; certainly they question the idea that there is enough history to be worth declaring an entire month of celebration. Some, as you see from the quote above, even question the value of an Autistic History Month.

But this is an important part of Autistics Speaking. This is our history. We are a people. No, we are not connected by ethnic or religious bonds like some groups who have a history month. But we are connected. We are a neurotribe. We have a way of being that is very similar among us, even those of us who have never met another Autistic person in their life. We have a culture. We have a history and it is time to speak up about it!

I am speaking about our history today for Autistics Speaking Day and I will continue to speak all month, sharing the vibrant tapestry of our history. I will not be silenced by those who try to shame me into silence because they feel it is inappropriate to talk about our history. I cannot even fathom the notion that it should be inappropriate to talk about Autistic history!! I will speak! And I will keep speaking until I have helped to create a world in which Autistic people know our history. Will you add your voice? We need to remember and share our history; it is an important part of who we are.

“If you know your history,
Then you would know where you coming from,
Then you wouldn’t have to ask me,
Who the ‘eck do I think I am.”

I am AUTISTIC, and I am proud of the history of my people.

DSM-5 and Autism: Developmen​t and Course, Part 4

After a pause to blog about other things, I’m back with some more examination of the DSM-5 diagnostic criteria for autism and related discussion points. I’m still working my way through the Development and Course section, which has seven paragraphs. Today, I look at paragraph four:

Deafness may be suspected but is typically ruled out. During the second year, odd and repetitive behaviors and the absence of typical play become more apparent. Since many typically developing young children have strong preferences and enjoy repetition (e.g., eating the same foods, watching the same video multiple times), distinguishing restricted and repetitive behaviors that are diagnostic of autism spectrum disorder can be difficult in preschoolers. The clinical distinction is based on the type, frequency, and intensity of the behavior (e.g., a child who daily lines up objects for hours and is very distressed if any item is moved).

The reference to deafness is based on our reputation for not responding to our name when it is called out. I think the most common reason for this is that we can get so focused in on what we’re thinking about or looking at that we close off the senses we aren’t using. Or, if we’re using our hearing to focus in on something, it’s hard for something else to break through to us. We tend not to have the same kind of sensory filters that non-autistic people have, so many of us don’t have the “cocktail party effect”  that makes voices stand out to us against a background of other sounds. I have seen research that tries to claim that human voices are “less important”  to us than other sounds, but I don’t think that’s a completely accurate interpretation for how we respond (or don’t respond) to voices.

The article I linked to claims we aren’t “motivated” by human voices. I think they are mixing up cause and effect and the truth is more likely that we aren’t as “motivated” by voices because we don’t hear them as well. On top of everything I mentioned in the previous paragraph, many of us also have some amount of CAPD (central auditory processing disorder) which seems to most strongly affect cognition in the range of human voices. I know that I can listen to music with a finely-tuned musician’s ear and hear every little nuance of sound but someone speaking can get very garbled very quickly. I’m not so good with telephones but can usually do well in a one-on-one conversation on Skype with a headset because the sound quality is better and always coming straight into my ears. In the open environment of a room, my hearing ability quickly degrades, especially if there are multiple people speaking at once or a noisy environment like  a restaurant with lots of piped in music, dishes rattling, etc.

I have surprised people when I have been sitting in a restaurant and started pointing out sounds to them — naming the song playing over the speakers above (“I didn’t even hear music at all!”) the sizzle of the grill in the kitchen (“oh! I hear it now that you point it out. But it’s so faint! How did you hear that?”) — yet I struggle to understand the speech of my dining companion sitting right next to me. I have no auditory filters — I hear EVERYTHING, all at once — and I have CAPD, so speech gets mixed up. (Think of CAPD as being something similar to having dyslexia of the ear.)

So, yeah, I probably have less neurological “pleasure reward” from voices, too. Even though I love the rich, chocolate sound of my boyfriend’s voice. Even though I can often identify people by their voice alone (a nice compensation for being blind to faces.) I’m not less motivated by voices, I just have a really hard time hearing and understanding the darned things!

So I suspect the actual issue with appearing deaf and not responding to hearing our name called is simply that we really don’t hear it. Some people seem to have a hard time understanding how our sensory perceptions work. It’s hard to fault them for that, since that ” how”  is actually a very individual thing. There are some commonalities, yes, but the overall pattern of hyper-sensitivities, hypo-sensitivities, changing sensitivities? That is excruciatingly individual. Every single thing I ever say about how my senses take in and interpret the world? There are Autistic people just like that and there are Autistic people not like that at all. Take me as a general guidepost but not a perfectly representative map.

Again, we see a mention that autistic behaviors can become more apparent in the second year of life. This is significant because it correlates with some vaccination times and could cause confusion in people who believe that autism is caused by vaccinations. The amount of change can be really dramatic, though. Some Autistic kids gradually reveal their autism as they grow and don’t make milestones on the same timetable as their age peers. Other Autistic kids really do change a lot, though. I’ve seen the video and photographic evidence: before age two (or so) the child is speaking, smiling, laughing. After age two (or so), the child no longer speaks, no longer smiles, and exhibits a marked loss of emotional affect. Science still has a lot of exploration to do before it begins to understand the development and course of autism.

When I look back at my childhood photos, I see myself laughing and smiling at age one and two but mostly deadpan, sullen, mournful afterwards. In my case it’s really hard to determine what’s what, though. I definitely became less bubbly when I started school because of the stress of it. The further along I got in school, the more stressful it became and the more my default affect became that of a dog that’s been kicked one too many times. I also had a brother who spent most of my childhood dying and completed the task just before I turned seven. So it’s impossible to look at my childhood facial expressions and determine what might be a sign of autism and what is just a general sign of a miserable childhood.

I find it interesting that now that I am an adult, I frequently get asked what I’m angry about or what’s wrong when I’m feeling calm and peaceful and happy. I am definitely a sufferer of “Bitchy Resting Face.” Either my face developed the habit of looking unhappy all the time (except when I’m laughing or when I’m paying attention to making my face look pleasant) as a result of years of suffering or I really do have affect issues and my default, relaxed, no-affect face looks gloomy to others who are so accustomed to all faces having stories written on them that they are still trying to read mine even when it’s just a blank page. Or I could just have, you know, Bitchy Resting Face.

Another point the DSM-5 makes is that many of the repetitive practices of autism are common to all small children. This is an echo of what I (and many others) are often saying: that autism is not so alien. The things we do are mostly things all people do. We just do them more often and with more intensity. My sister is not autistic. When she was about two years old, she memorized every commercial on television. She is quite bright so she only needed to hear them once to have them completely memorized. She would gallop through the house on all fours, pretending to be a horse, singing commercial jingles at the top of her lungs. If you said something that had two or three of the words of a song from a commercial in a row, she’d start singing the whole jingle.

My sister was deeply obsessed with television commercials and repeated them all day long. But for a two-year-old, that is normal behavior. I used to know an Autistic boy who behaved the same way at age twelve. He memorized commercials and entire television and movie scripts. Almost everything he ever said was a line from a movie. The technical term is echolalia, but when you read about echolalia, so much of the literature claims that the people engaging in it are not making sense and are just randomly speaking nonsense. In my experience with “Kyle,”  that was not the case at all.

Kyle was always communicating when he repeated movie scripts. If you looked past the fact that someone else had written the words he was using, you could clearly see that they were his words — he had made them his own. And he was always matching quoted phrases to the situations he was in. For example, if you were serving him at Thanksgiving and asked him if he preferred breast meat or dark meat he might answer by quoting Freddy Krueger from the horror film, “Freddy vs. Jason”:  “How sweet! Dark meat!” (In the creepy Freddy voice and everything!)

Not everything Kyle said was so easy to interpret as that, but every quote he recited had meaning for him, regardless of whether those of us around him could accurately interpret it or not. All I can say about researchers and other professionals who claim that repetitive movie quoting is random and pointless is “what we have here is failure to communicate — some men you just can’t reach.”  And, in case I’m not being clear the failure is on the part of the professionals. The “echolalic” is doing just fine . . . for anyone who is willing to really listen and presume competence and communication.

So there’s my take on paragraph four. I’ll be back with the next paragraph and on through the rest of the DSM-5 entry. I will probably be be returning to this DSM-5 topic (with interstitial side-tracks on other topics, including the upcoming Autistics Speaking Day and Autistic History Month essays) throughout the rest of the year because there’s so much in there and it’s so fascinating to me. I hope these ramblings are helpful to you, too.

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