Your Children Are Listening

You might think they’re too young to understand. You might think they aren’t paying attention. You might even think they are incapable of awareness. You are wrong; your children are listening.

Your children know what the world thinks about autism. Your children understand. They hear. They see. You may think that’s not true because they don’t look at the source of the voice. You may think that’s not true because their bodies don’t take the positions that you associate with reading. You might think they don’t know. They do. Your children are listening. What are they hearing? What are they hearing from you?

It is hard to be Autistic in this world. It is so hard that I step into it for a while, then pull back again like someone who’s made the mistake of leaning against a hot wood stove. When I am in the Autistic community, I hear things every day – beatings, killings, torture, death. It’s too much to take. So I pull away but autism is everywhere now. Autism awareness — usually completely divorced from autism acceptance — means that there is no place for me to go where I am not followed by the words. I cover my ears, I hide in my home, I shrink my social contact smaller and smaller and smaller until it is a needle-sharp single point and still the words follow me in.

I hear how pitiful I am. I hear how frightening I am. I hear that I will pick up a gun and kill everyone. I hear that I am incapable of doing anything productive. I hear that I am a burden to the taxpayers. I hear that warehousing people like me in our own separate community, away from the rest of the world, would be a kindness to us. I pick up the latest medical journal to read about my health struggles and learn that I cost society $1.4 million.(1) I turn on the news and hear someone talking about my lack of empathy and how dangerous it makes me. So I change the channel and I hear about autism on a comedy, a drama, a commercial — I hear myself portrayed as a joke or a sadness or a tragedy or someone pitiable.  All over the internet, people are talking about the great tragedy, the epidemic, the tsunami. People with few other opinions about science discuss my allegedly poisoned brain with confidence, debating whether I was damaged by the air pollution, the GMOs, vaccines, lack of vitamin D, my father’s advanced age. People speak reverently about a future time when people like me are never born any more.

The whole world is talking about people like me. I hear it all the time. I hear it even when I try really hard to get away from it. And your children are listening to it, too. When the world talks about us like this, how do we find the path to feel good about who we are? How do we find the motivation to keep working to try to find our way in a world that so clearly doesn’t want us here? How do we learn to fit in with people who make it clear every day that they think we are broken, wrong, undesirable? How do we keep from feeling hated, pitied, feared, despised, and like we should never have been born in the first place? How do we keep from adopting those feelings about ourselves and turning the hatred inward?

Your children are listening. The world tells them every day that they are unworthy. What do you tell them? Do you love that poem about accidentally traveling to Holland? Maybe you even printed it out and taped it to your refrigerator to remind you every day that Holland has tulips and windmills and isn’t so bad after all? Go read that poem again and step out of your struggle to be okay with Holland when you wanted to go to Italy. Step out of it and think about being Holland. Read it as if you are Holland and weren’t wanted and are mourned and are second-best and put-up-with. Read it and then pull it off your refrigerator and put it in the trash. Your child read that poem. They never said a word to you about it, but they read it and thought about it and they knew it was about them. They knew that they are Holland and you wanted Italy.

Your children are listening. Stop thinking about how hard all of this is for you and think about how hard it is for your children. You have the difficult struggle of raising a disabled child. Your child has the life-long struggle of feeling like they never should have been born.

You may think that parenting an Autistic child is about learning to work with meltdowns, fighting for IEP accommodations, figuring out which interventions are the best, going in front of a judge to keep your young adult child legally a minor so that you can continue to protect and nurture them, funding a long-term plan to care for your child after you are gone. All these things are important, yes. Very important. Many of you have children who will need life-long assistance and it is up to you to make sure that is put in place in ways that ensure the best possible quality of life for your child. You are filled with love and fear. Your obstacles are huge. The challenges are hard.

But when you put your head down to push forward in that struggle, don’t let the never-ending fight block your view of one excruciatingly important thing: your children are listening. They know. The emotional legacy you leave your children is every bit as important as leaving them well taken care of. Your child needs you to help build their spirit. Your child needs you to teach them how to live happy and with a strong sense of self in a world that wishes they weren’t here. Whether you like it or not, your child is listening. Whether you believe it or not, your child is listening. If you don’t do something active — every single day — to make sure your child knows they are good and right and fully human and deserve to be here, your child will only hear the sorrow and fear and pity. Your child will only hear that they are not wanted on this Earth. Your child will only hear what a burden they are. A burden, a disease, poisoned, broken, dangerous, expensive … less than worthless. Less than useless. An active plague upon others, a tsunami, an epidemic.

Your children are listening.

 

1  Buescher A, Cidav Z, Knapp M, Mandell D. Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatr. 2014 Jun 9; online-first edition.

Labels are for Soup Cans?

There’s something that kind-hearted and well-meaning people say that can hurt. Well… there are lots of things like that, but today I want to talk about the anti-label statements.

It goes something like this:

“Let’s go around the circle and introduce ourselves.”

“Hi, my name is Sparrow. I’m a writer, artist, musician, and astrologer. I live in an apartment with my cat, Fermat, and I am Autistic.”

“Oh, Sparrow, I don’t think you should call yourself autistic. Labels are for soup cans, not people! You’re such a sweet, intelligent young lady. You don’t need to use that label on yourself any more. We all accept you here. You’re just like us and seem totally normal to us. Don’t label yourself.”

a bowl of alphabet soup with the word Autistic floating in it.

image: a bowl of alphabet soup with the word “Autistic” floating in it.

The person who says that is trying to be progressive and enlightened and kind and accepting. It is so hard to tell them that they are hurting me because their words so obviously come from a place of love. But those words also come from a place of fear and misunderstanding, so it is only by explaining why it hurts me to tell me not to label myself that I can help others to perfect that love they are trying to express.

In my opinion, labels are valuable tools.

Labels help us to find other people with whom we resonate. How many dating sites would people bother with if you couldn’t use labels to tell prospective dates that you identify as: male, female, (on more enlightened sites, there are more gender options), Jewish, Neopagan, Christian, atheist, agnostic, Muslim, Buddhist, etc. African-American, White, Asian, Native American, etc. smoker, non-smoker, and so on. Those labels are crucial if people are to find dates with the sort of people who “ring their bell” and try to form intimate partnerships with them. Imagine trying to find a date on a site where all the people were just randomly jumbled together.

Labels help us to find groups with which we click. I wouldn’t be studying Morse code right now if I weren’t able to label myself as a ham operator and find other people who also call themselves hams. I would have missed out on a lot of great friendships if people from the Rainbow Family refused to use labels and didn’t call themselves Rainbows. People use labels all the time when they are seeking groups with which to associate.

Labels help us to understand ourselves better. Yes, they are a sort of heuristic — a short-hand and reductionist way to identify things that doesn’t encapsulate the entirety of who and what a person is — but they are so useful. A woman who notices her stomach getting bigger and bigger is comforted by remembering that she is pregnant. Pregnant is a label. When I get frustrated that I have to slowly reason out people’s words and actions and cannot interpret them immediately and on-the-fly, it comforts me to remember that I am Autistic. Autistic is a label.

We’ve all heard someone say — either joking or seriously — “that’s because I’m a man,” or “I feel this way because I am transitioning,” or “that’s because I’m a woman,” or “it’s because I’m still a kid,” or “come on, I’m a grown-up!” or any variety of these. Man, trans, woman, kid, grown-up – all labels. And all useful.

Abandoning labels is well-intentioned — it tries to seek to avoid harming others. But it can cause more harm than good. I view the drive to abandon labels as a close relative to person-first language. Both seek to assert one’s humanity in the face of something considered dehumanizingly horrible. We don’t find people insisting on person-first language for conditions considered positive or neutral, like being an artist, musician, male or female, etc. People only get cranky about the “person living with Thingness” construction when being a Thing is thought to be something terrible.

Likewise, people who say that people shouldn’t be labeled (“labels are for soup cans, not people”) have no problem with labels like “man,” “woman,” “artist,” “musician,” “writer,” “astrologer,” “Nobel Prize Winning Physicist,” and so on. They only pull out their anti-label rhetoric when they are cringing about the particular label a person has been given or has given to themselves.

Now, when that label is a genuine pejorative someone else is using to restrict or hurt a person, it’s great to fight labels. Many people reading this have fought hard to wipe out the R-word and I love you all for that! But when someone has embraced their label and is proud of it and feels that it conveys important information about their identity — like “Autistic,” for example — it is a painful squashing of their identity to refuse to accept their label.

In some ways, it’s even worse than person-first language. Person-first language says “I want to separate you and your autism and put you first to remind people that you are a human being because autism is such a terrible thing that they might forget you are human if I don’t linguistically separate it from you.” Anti-labeling says, “I want to deny the existence of your autism altogether. It is inherently dehumanizing so I want to use language to pretend it out of existence entirely.”

If someone is being bullied with labels, it is great to step in and stop it. But when someone trusts you enough to share a core piece of their identity with you, it is a slap in the face to tell them that labels are for soup cans, not people. When you say something like that, you are trying to keep the soup and throw the can in the trash. I am Autistic and if you try to throw that in the trash with the soup cans, you are throwing me in the trash and it hurts. Enjoy my soup (I think it’s tomato-basil soup. I hope you like it.) and learn to accept my label without cringing because I love my label. Autistic is who and what I am. Yes, it is a heuristic — I am so much more than that word. But if you reject that word, you are rejecting me.

No You Don’t

trigger warning: stories of abuse, poverty, and discrimination

 

When I meet parents of young Autistic kids, especially after they find out how much I was like their kids when I was their kids’ age, many of them say “I hope my kid is like you when she grows up!”

 

I used to say, “I hope she’s much better off than I am,” or simply, “no, you don’t,” but over time I learned that parents refuse to accept that answer. Maybe they think I’m doing that social thing where someone compliments you and you are expected to refuse the compliment a time or two, finally accepting it but maintaining your veneer of humility. Or maybe they’re just baffled. But sometimes they even got angry so I finally learned that I should answer, “thank you. That’s very kind of you to say.” Reinforced behavior — reinforced by social censure if I dare give the wrong response. And I am exquisitely sensitive to social pressure — it was one of the biggest clues that made me reject the misdiagnosis of schizoid personality disorder the moment I was given that one.

 

But the truth is that they do not want their child to turn out like me. If your Autistic child turns out like me, you have failed. Your Autistic child deserves so much better than to turn out like me.

 

Oh, I know what the parents are seeing when they say that. I’m not so mindblind as to not realize: they see a very articulate adult. My writing skills are excellent. My vocabulary is quite large. And, while the largest part of it is self-taught, I am extremely well-educated. I even have university degrees: two bachelor’s degrees and an ABD (that’s “all but dissertation.” I dropped out of graduate school about two inches away from a doctorate.) They see that and they think, “my child is non-verbal. My child goes to school and crawls around on the floor, meowing like a cat. My child still wears diapers while all her age peers have been toilet trained. My child bites and hits people. My child bites and hits herself.” And so on.

 

Then they hear that I was many of those things, myself. I was kicked out of the classroom for crawling on the floor and hiding under the tables. My first grade teacher said I was “mentally retarded” and petitioned (successfully) to have me removed from her classroom. I would not speak. I bit people, hit people, bloodied other children’s noses, hit them with sticks, kicked, and spat on people. I could not hand-write and so I did not do school-work. I wet the bed until I was fifteen years old. I set things on fire. I was a very troubled and trouble-causing child. As a teen, I was expelled from the entire county school system and my parents had to find a private school willing to take me. At sixteen, I dropped out of school altogether.

 

And yet, they think, you turned out all right. I’m told I’m inspiring. I’m told I give them hope that their kids will be okay. How dare I dash that hope by telling them that no, I do not want their children to turn out like me. Maybe they think I say that because I hope their children do not succeed? That is not the case at all. The only reason I’m typing these words today is because I want your children to succeed. I want you to help them be happy, healthy adults. I want you to learn and I want you to do it better. I don’t want the children of today to spend tomorrow going through the things I lived through yesterday.

 

I was raped. I was abused — domestically and otherwise. I was molested. I was taken sexual advantage of. I want you to teach your children to say no and I want them to know how to mean it and back it up when they say it. I want you to teach your children to value themselves and I want you to teach them to own their bodies.

 

Children like yours — children like I was — are taught to be compliant. That’s what 90% of autism therapy looks like to me: compliance training. They become hungry for those words of praise, those “good girls,” the M&Ms or stickers or other tokens you use to reward them. They learn quickly that when they do what you want them to do, they are a “good girl” and when they try to do what they want, they are a “bad girl.” I was not allowed to refuse to hug the man who sexually molested me for a decade of my childhood because I might “hurt his feelings.” That’s pretty major, but there were millions of minor experiences along the way, chipping off my understanding of myself as something owned by myself and not something owed to the world around me.

 

Even something so seemingly simple as the constant pressure to smile. Everybody wanted me to smile. And I was told that I was such a pretty girl and ought to smile. And I was told that I was so pretty when I smiled. And it was so important to everyone that, after a while, I sat in front of the bathroom mirror practicing faces, trying to find the muscle-feeling that would make a smile. I practiced and perfected until I could make a smile on demand. I worked hard until I had a smile that made everyone happy and got them to quit bothering me. And now, when I am afraid that I am being a bad girl, when I am resisting what someone else wants, when I am feeling the pressure to be a rag doll again, to be whatever and whomever I am being asked to be, I put on that smile as a shield to protect the tiny scraps that are left inside me as I give in and give up who and what I am because the pressure to comply is so huge and so uncomfortable. And because I was never allowed to say no, never allowed to own myself, never allowed to not-want and still be a good-girl.

 

You do not want your child to grow up to be like me.

 

I live in crushing poverty. I live on SSI, Medicaid, and food stamps, which means that I live about 20% below the poverty threshhold. If I marry, I lose much of that and become dependent on my husband, stuck in a relationship that I can only hope stays good because I have no resources to leave. If I marry someone else on SSI, the two of us lose about 25% of our cash and resources, so I have strong incentive to live and love without the legal protections that marriage can bring. With the current political climate and the battle over same-sex marriage, I think most of us now realize what it means to not be allowed to marry. My situation is somewhat different in that I am allowed to marry but I am penalized so grievously if I do that it is not really an option for me.

 

Although I am so poor, I feel wealthy and fortunate because it is such a big step up from how I used to live. I have never been able to keep a job, which means before I started getting SSI, I was unable to consistently keep a roof over my head or food to eat. I spent a lot of time sleeping in the park, in public restrooms, on loading docks. I ate at soup kitchens and out of dumpsters and off what food I could steal. I entered into sexual relationships with strangers in exchange for a place to sleep and food to eat. It’s called survival sex and it was really easy for me because of my life-long training as a rag doll, compliant, always more concerned with what everyone else wants than what I want, feeling frustrated and worthless because, despite that strong urge to please I never could actually please anyone. So it was easy to give up my life, pitiful though it was, to someone else again and again and again in order to stay alive. My life was not worth much, but it was all I had and I clung to it.

 

Survival sex means abuse. Survival sex means being asked to do shocking and disgusting things — not even all of them sexual so you probably can’t even imagine the things I’ve been expected to do in order to survive. Survival sex means walking across the mile of bridge once again because someone thought it was funny to drive you out of town and drop you off alone, someone thought it was easier to deal with that slut they spent the night with by leaving her far away than risk that people they know might find out they were with her. Survival sex means risking your life, every day of your life, in order to stay alive.

 

You do not want your child to grow up to be like me.

 

I am well and truly disabled. I thought going to university would help change that, but I developed more disabling conditions while I was in university and struggling to comply. I didn’t feel worthy to ask for accommodations that might have helped me. I was brought up to believe that I have to do things the way everyone around me does them and even then I am of less value than them because almost always, they do it better than me. But I can’t ask for special treatment. I have to keep pushing to do it the way everyone else does. I begged to use a typewriter for school work but I was refused. I can’t have special treatment. I will learn. I will get used to the pain. I will get used to the agony. I just have to keep trying. I just have to keep pushing through. If I ask for accommodations, I am admitting weakness. I am asking for special treatment. I am getting there on an unfair advantage and it won’t count.

 

So I actually went through ten years of university without accommodations for my dysgraphia, my central auditory processing disorder, my vestibular hyperacusis, my dyspraxia (mild though it is), my periodic mutism, my shutdowns, my meltdowns, my hypernychthemeral syndrome, my visual migraines . . . and the depression and anxiety and agoraphobia this collection of misery brought on. Because the thing all those conditions have in common is the modifying pronoun: they are mine. They are mine and I am supposed to own them and take responsibility for them and budget my time and apply myself (because I am not “living up to my potential”) and conquer them. I am not supposed to ask for help. I am not allowed to ask for help.

 

You need to teach your child how and when to ask for help. It is just as important as teaching them how to say no and mean it.

 

You do not want your child to grow up to be like me.

 

Disability is about more than impairments or barriers to doing. Disability is about societal discrimination and barriers to being. I am not just disabled by my conditions. I am not just disabled by my difficulties in saying no and asking for help. I am disabled by the world around me and the expectations it puts on someone who looks like me (and writes like me!) and the attitudes it has about what I can do and what I cannot do.

 

I face strong discrimination every day. I am treated as lesser because I live on SSI. I am frequently accused of scamming the system by people who only understand disability as impairment in mobility or visible deformity. I am told, “you look just fine to me” by people who have never set foot inside a medical school. I am given unworkable “solutions” and told I’m ungrateful and not trying if they will not work in my life. Those who don’t directly say anything to me show through their behavior that they view me as lesser, they think I have given up, they think I didn’t try, they think I am lazy, they think I am living off their tax dollars. Every day, I hear someone say, “why should I have to work so hard to pay for people who won’t?” I live in a world that tells me every day, directly and indirectly, that I am a worthless parasite.

 

If I do not talk about being Autistic, I am viewed as an inferior example of a human, one who can barely get by, a slob who can’t keep her house clean, a lazy, good-for-nothing, welfare queen. If I do talk about being Autistic, sometimes I am not believed — because I can talk at all. I sometimes suspect most people don’t believe in my autism because they saw Rain Man or they saw Touch or they saw Change of Habit or they saw Mercury Rising or they saw Bless the Child or they saw whatever godawful made-for-TV movie-of-the-week that convinced them that they know what Autistics look like and I ain’t it.

 

Trust me, I was just as shocked to find out I am Autistic. When I grew up, most of your kids would not have been diagnosed. They say we have an “epidemic” of autism, a veritable tsunami of Autistic kids. When I was a kid, a good 90% or more of your kids would not have been diagnosed with autism. They would have been like me, labelled as “emotionally disturbed” and then treated and mistreated as mysteriously broken — often treated with “tough love” to try to break them out of their “willful disobedience.” Everything people say about your kids today? That they are brats, that they are spoiled, that they just need a good spanking? Those things were said about me, with the exception that I didn’t have the autism diagnosis or the modicum of understanding your kids have so I was spanked and tough loved and abused into who I am today.

 

I am not convinced that most ABA therapy is much different from the abuse I lived through.

 

I still see parents and teachers abusing children in the name of treatment.

 

Too often, I see a different label — autism — but the same lack of understanding surrounding it.

 

And those kids are going to grow up into a world that doesn’t want them, that doesn’t want to employ them, that thinks they’re scamming the system if they live on government support. The vast majority of Autistic kids are going to grow up to be adult Autistics like me. Even most non-verbal kids grow up to be verbal. Most Autistic kids are not going to grow up into the sort of adults that people look at and immediately want to help. Most of your kids will grow up to be like me. And that is criminal.

 

Adult Autistics have a staggering unemployment rate. It’s around 85%. Many of us would love to work but are unable to find anyone willing to give us a chance. In most cases, it’s not that we can’t work or won’t work. In most cases, it’s that there’s no one willing to accommodate our needs, including the need to be accepted as people who look, sound, and behave differently. People are uncomfortable around us. I strongly suspect that the “less Autistic” we look, the more uncomfortable others feel around us. If we are very visibly Autistic, we are “other” and that is easier to accept. Not-like-me is much easier to handle. But the more we look “like everybody else,” the creepier it is for others when we turn out not to be like everybody else. The higher the expectations that are layered on us, the bigger a failure we look when we’re unable to live up to those expectations.

 

Number one: don’t focus so much energy on making us look “normal.” That’s a waste of time. We’re not “normal” and we will never be “normal.” We are Autistics and we are better off when you focus your energy on helping us to be the best Autistics we can be. If we look “funny,” people will learn to handle that. They will get used to that. It’s more important that we feel safe, calm, happy, competent. It doesn’t matter as much what we look like getting there. If we flap our hands, if we don’t look people in the eye, if we communicate through typing or we speak in a monotone — it’s okay. Those are not the things that matter. But I see so much focus on those things as if getting us to look right is all that’s required to enact a “cure.” Too many people seem to think that if we look like everybody else, their job is done and we are “cured.”

 

But the monumental effort I put forth every day to try (and fail) to look like everybody else is sapping my talents and potential. All my energy, all my intelligence, goes into looking normal. There’s nothing left over to do a good job at something. When the most important thing is for me to look and sound like everybody else around me, all I have personal resources for is showing up. That’s all you can get out of me. And that’s not even enough for a job at McDonald’s. I know. McDonald’s fired me after two weeks.

 

You do not want your child to grow up to be like me.

 

I don’t have good answers. I don’t have easy answers. I don’t think there are good, easy answers. But I do believe that raising your child — if your child is an Autistic — is a much bigger task than just raising your child. If you care about your child, you need to be willing to reach out past your child. I do understand that raising a child, any child, is huge and takes all your time and energy. But if your child is an Autistic, you owe it to your child to reach past him or her and work on building a world that will accept your child. You have a responsibility to become an activist.

 

It starts with how you treat adult Autistics. Do you listen to them, or do you insult them? When they tell you how hard their lives are, do you get scared for your own child and push the adult away? Do you take their anger too personally because you are afraid you might not be raising your own child in a way that will keep them from growing up to be filled with anger? Are you afraid your child will grow up to hate you?

 

If adult Autistics scare you, do something! Listen to them! Take them seriously! Don’t treat them like children. Don’t tell them they can’t possibly understand your child because your child is different. No matter how much you wish your child were different, they’re not. They’re made of the same stuff as adult Autistics, yes, even the most scary adult Autistics.

 

Your child is just as vulnerable to growing up abused and discarded. Your child is just as vulnerable to growing up impoverished and angry. Your child is just as vulnerable to turning out the way we adult Autistics have turned out and not just the ones that inspire you. If you want your child to be someone who inspires you, you need to stop only valuing those adult Autistics who inspire you and instead value all of us. You will never understand how to help your child become the next Temple Grandin (or whomever your favorite adult Autistic hero is) if you do not take the time to understand how your child could become the angry Autistic activist who makes you want to cover your ears and hide.

 

How you treat adult Autistics — all adult Autistics — is how you are telling the world to treat your child in twenty years.

 

The kind of world you are working on building for adult Autistics today is the kind of world you are leaving your Autistic child to inherit tomorrow.

 

You are working hard to raise a healthy, happy kid. What are you doing to make a world that kid will be able to live in?

 

You do not want your child to grow up to be like me.

 

So what do you want for your child? Whatever you want, it requires a lot of work and that work has to come from you and that work starts today, right now, this minute.

 

What are you going to do next?

Autistic Inertia: An Overview

I was talking with my boyfriend yesterday about autistic inertia. I was describing how it affects me and bemoaning the fact that it’s so clearly a real thing that exists but I never see researchers or educators talking about it — just us autistics. We know it exists, we know it’s a real thing, but it’s not in the official literature and no one is researching it.

After I described it a bit, my boyfriend remarked upon how similar it sounds to what people with Parkinson’s experience. Upon reflection, that didn’t surprise me too much since Parkinson’s is linked to dopamine and I’ve read autism research that talks about irregularities in dopamine and seratonin in the autistic brain. He did a little searching and found a study using Parkinson’s medications on autistic people that reported little improvement. But he also remarked that if the researchers weren’t specifically looking for improvement in autistic inertia, they may have missed some of the effects of the medication.

I promised my boyfriend that I would send him some links to things fellow autistics have written about autistic inertia. At the same time, I realized it’s been a while since I updated my blog and so I thought I would just share the information here in case it’s helpful to more people than just myself and my amazing boyfriend who is always so willing to go out of his way to understand me better.

(I think about how difficult it must be to have a girlfriend who is not very “standard issue” and I marvel at my great good fortune to have the heart of a man with his patience and gentleness and a love so big that he has become an expert on autism just for me. His love keeps me going when everything else in my life tries to stop me.)

The first thing I ever read about autistic inertia was Anna Sullivan’s handout from her presentation at Autreat 2002: Inertia: From Theory to Praxis. Sullivan talks about the different manifestations of inertia and her descriptions make it clear that inertia is not one single thing. From what I can see, there are elements of executive dysfunction, of low energy/hypotonia, and of being out of touch with one’s body and emotions. And this is just the beginning, from what I can tell. One thing Sullivan doesn’t mention, though, is the idea that inertia is a difficulty in “changing gears.” You will see the professionals talking about “gear changing” issues sometimes and that’s a part of inertia, although not all of it.

Also, Sullivan doesn’t mention that inertia in autistics is not dissimilar to Newton’s inertia, in that not only do we have difficulty starting things if we’re stopped but we also have difficulty in stopping things if we’re started. As I told my boyfriend yesterday, when I start researching for a paper, I have a hard time stopping the research and starting the writing. So I will end up with enough research material for seven papers before I ever manage to make myself stop researching and start organizing my material and writing it out. It does mean that my papers tend to be really good since I know far more than I end up putting in writing. But it also means that it doesn’t matter how early I manage to start working on a paper, I will always be scrambling to finish it at the last minute.

Something very important that Sullivan points out is the unevenness of skill sets in autistics. That is, an autistic person might be able to do something easily one day but run up against severe inertia with the same task on another day. Autism isn’t something constant like blindness or deafness but rather something variable, more like multiple sclerosis, fibromyalgia, or lupus. What we can do one day, we can’t do every day. What we can’t do one day, we might be able to do on another. This, in my experience, has been one of the hardest things for people around me to grasp. People seem to expect some sort of constancy and consistency in the people around them and I’m just not able to provide that steady, constant level of skill and function. Some days I easily “pass” for non-autistic while other days I am quite obviously affected by my autism.

Sullivan ends with a suggested reading list. Since the article is older, one item on the list might be supplanted with a newer book. Sullivan lists “Punished by Rewards” by Alfie Kohn but I might recommend also reading (or reading instead) “Drive: The Surprising Truth About What Motivates Us” by Daniel H. Pink.

Sullivan mentions a posting from Kalen and it’s really good so it should be on the to-read list as well: Inertia: by Kalen. Kalen writes about inertia from a more Newtonian perspective, including both getting stuck within a task as well as getting stuck trying to do a task. Kalen also mentions how disabling inertia can be in a person’s life. It was a relief for me to read someone else describing inertia that way because it has certainly prevented me from doing many things I really wanted to do and it’s hard not to feel lazy or inadequate about one’s own inertia without the proper understanding of what it really is and what it really means.

Kalen describes inertia as “a combination of attention shifting and motor planning difficulties” which definitely resonates with my experience. There are times when I am only able to act by willing my body to perform and just as many times when I cannot get my body to perform, no matter how much will I exert. When I lose the ability to speak, I can think about the sounds that I want to create. I can think about the ways my mouth and throat and lungs move when I generate those sounds. But I cannot will my body to speak. It is as baffling to me as it is to those around me, but I can think the words — I can even type the words — but I cannot speak the words when I am in a state of “speaking inertia.” Just as there are times when those around me feel I might never shut up, there are times when it seems I might never speak again.

Kalen offers a few suggestions for how to work with or around inertia, warning that not all suggestions will work for all people, nor will a suggestion that works sometimes for someone work every time or in every situation for that person.

ArtsieAspie writes about the idea that autistic “special interests” might actually be a form of inertia in her blog entry on her site, Letters from Aspergia. She talks about inertia as a sort of “stuckness” and mentions how much more we autistics tend to get overtaken by “ear worms” — music stuck in the head. Or movies stuck in the head. Or anything stuck in the head. I have gotten stuck on a word or phrase and ended up repeating it over and over. In my opinion, yes, “stuckness” is inertia, whether it’s being stuck on a special interest or stuck on song lyrics or stuck in a sort of stutter-loop.

Although, just as with every other aspect of autism, it is easy to assume that all troubles trace back to an autistic trait. On LiveJournal, ChaoticIdealism writes about Autistic Inertia & Sleep in a way that makes it clear to me that they are living with Non-24-Hour Sleep-Wake Disorder and assuming it’s actually a manifestation of autistic inertia. I can really relate to that since I originally thought that my own Non-24 Disorder was actually Autistic Burn-out. (That’s a whole different blog entry, but you can read about autistic burnout in Amanda Baggs’ excellent essay Help! I seem to be Getting More Autistic!)

Ali/Eliot writes about inertia and perseveration as two sides of the same coin in his blog entry, Stare Up at the Sky. He talks about how difficult it can be to make decisions — everything from big decisions like buying a new laptop to little decisions like what to eat for lunch. He talks a bit about how his partner, Kitty, does thing to make it easier for him to eat regularly and make other decisions.

Andrea has a few tips on how to battle inertia in her blog entry Coping With the Inertia of Task Paralysis. But, as a commenter points out: “Great ideas, Andrea, but how the heck am I going to remember to do all that? I have a hard enough time remembering to remember and now I’m supposed to remember the reminders for remembering? Help! I’m trapped in an infinite regress!”

I’m sure there is much more out there on autistic inertia, but the above is a fair introduction to the topic. Please do discuss this in the comments! I really want to hear from anyone and everyone about inertia, whether it’s personal experiences or scientific (or even pseudo-scientific) theories. This is a topic that needs to be understood much better than it is and right now we are the ones hashing the ideas out. It’s up to us to figure out what’s going on and what to do about it.

Thanks for reading and I look forward to hearing from you all!

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