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What Autism Means To Me

April 30, 2013 1 comment

It’s been a rough week so far, and I’m tired, so this will be short.

Autism has brought so much positivity into my life. I still don’t know if I qualify for a “formal” autism diagnosis, but it doesn’t really matter. The autistic community has accepted me, and supported me, and helped me to understand myself, and now I no longer feel isolated for my scattered handful of mental functioning deficits, and that is enough.

Autism has given me friends, and new hobbies, and new ways of thinking about myself, and of thinking about others, and thinking about thinking, and about education, and about human rights and dignity and intelligence.

A few days ago, I saw a screening of the documentary “Wretches and Jabberers,” the story of two men who grew up without any codified means of communication and then, as adults, traveled the world teaching others about autism and about the fact that intelligence does not require speech.

And I cried at the times in the film where I could understand the body language and needs of these men and their own aides did not.

And my dear friend and housemate flapped zir hands with me at the wonderful parts.

And zir boyfriend laughed with the two of us at some of the ridiculously clueless comments that a few allistic (non-autistic) audience members made afterward, and the three of us cheered for the two autistic young men who volunteered to come up to the microphone and tell the whole audience that they liked the film.

Autism means many different things to different people, including people on the spectrum and their families. I know that for many people, being autistic has involved a lot of pain and suffering and stigma and struggle.

I will continue to fight for a world in which being autistic does not have to involve any more pain or suffering or stigma than not being autistic.

Because to me autism means, and will always mean: laughter with happy flaps, and the fun of pointing out patterns and oddities to each other, and rocking while brainstorming about disability rights, and geeky jokes, and people who squee in joy with me at rainbow colors and the unexpected beauty of under-appreciated things like math, and science, and solitude.

To me, that is autism.

And I hope they never find a cure.

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Could you pass this kindergarten?

I love this post talking about neurodiversity and how we set children on the spectrum up to fail from day one in school.

Life, His Way

I came across this blog post today: On Failing Kindergarten. The author, an autistic adult, explains why she would fail special ed kindergarten based on their “Whole Body Listening” requirements as depicted on this poster, which is apparently popular in those classrooms:

Whole-Body-Listening-Poster

Take a look at all the requirements for listening correctly. It’s not enough to just listen, as in: hear what the other person is saying and process it. You also have to make eye contact, keep silent, keep your hands still and in one of three acceptable places, keep your feet on the floor, turn your body in the right direction, make your brain think about the words, and CARE.

Are neurotypical students held to these standards? I don’t remember all these rules for listening in kindergarten. I know that if I had been told I HAD to CARE about what my teacher was saying, I would…

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About Autism Parents

I see this happen a lot. An autistic adult writes something about parents of autistic kids– usually something snarky, or bitter, or angry, or all of the above. They are then inundated by comments from parents saying “We are not the enemy!” and “I have given everything for my autistic child. How dare you judge me?” Members of the autistic community bite back, yelling at those parents for derailing, not listening, and trying to silence autistic people. And everyone goes away with hurt feelings.

I understand the defensiveness of those parents. There are few things in this world as strong as a parent’s love for their child. Most parents would give their life for their children. Parenting a child is a life-changing experience, more intense than any full-time job, more challenging than any exam, more filled with emotions than any other part of life. For many, being a parent becomes the core of one’s identity, and the idea that one may be doing it all wrong is soul-crushing. And the idea of being judged by someone who hasn’t been there is infuriating.

(I will mention here that I am not a parent. I got all the above from talking with my own mother, from being a nanny, and from being close friends with people who are parents).

I understand, too, the fury and contempt of the autistic adults who see these parents as wanting a “cookie” for having good intentions, for having struggled and suffered and sacrificed. Most of them have struggled and suffered more than you will ever know.

The vast majority of people with disabilities, particularly developmental and intellectual disabilities, have been abused. Often the abuse was sexual, and parents may have been the perpetrators or simply failed to protect their children from other predators. Sometimes the abuse was unintentional, as when a parent fails to understand that a stimulus or activity is intensely painful for the child. Often, too, the abuse comes in the form of therapy, and is meant for the best, only to traumatize the child instead and destroy their self-esteem. Sometimes parents kill their disabled children, and then we disabled adults go online and read the comments… and find that most people’s sympathy lies with the murderers. It was so hard for them to have a disabled child. They tried so hard and gave so much and in the end it was really a mercy killing and everyone is better off and…

NO.

So parents, that’s what comes to our minds when you say: “parents are not the enemy.” Sometimes parents are the enemy. Is it fair for us to judge you all because of a few horror stories? No. But while parents murdering their children may be rare, the rest of what I mentioned isn’t. It’s a bitter truth, as much for us as for you. Take off the rose-colored glasses and face it.

My mother was not the enemy. She made mistakes with me– all parents do. She did things I hated, and things that I hated her for. She misunderstood me and my needs at times. She failed to teach me certain crucial skills, and taught me things I didn’t need, like how to worry too much. She made a million errors… and she was a wonderful mother. She loved me unconditionally and she never asked me to be anyone other than I was. I never felt threatened by her in any way.

There is a difference between the things my mother did wrong and the things many of my friends endured as children. I need both hands to count all the people I know who were raped by their caregivers. I know people who were beaten, bullied, and above all, shamed for being who they were. They were corrected, constantly, for the way they spoke (or didn’t), acted, looked, and thought, to the point where they believed they could do nothing right. This kind of abuse is by no means limited to children with disabilities, but it is greatly magnified in cases where the children cannot easily pass for “normal,” or follow all the rules their parents set, or act and look the way society expects them to. The corrections were not always meant as abuse, but fundamentally, they consisted of asking these children to be something they were not, and that is one of the most damaging experiences a child can undergo.

Again and again, I hear parents say “I wish my child didn’t have autism. I wish I could cure my child’s autism. I will fight my child’s autism with my dying breath.”

What they usually mean is: “I love my child with all my heart, and it hurts me more than anything to see them struggle so hard with things others do easily, to see them pitied and looked down upon and misunderstood. I want to take away the symptoms that cause them pain and distress– the anxiety, the oversensitivity, the difficulty they have eating and sleeping and walking and talking. I want them to live and learn and love, and I am scared beyond belief that this diagnosis will make it impossible for them to have a life like mine, a good life, a happy life.”

What their children hear is: “I wish that you did not exist, and that I had a normal child instead of you. There is something terribly wrong with you, something about YOU that causes me grief and pain and frustration. I wish you were something different. I will work tirelessly to erase your differences, to make you look and act and seem as normal as possible. I will never accept you the way you are.”

Children: remember that your parents love you, and that they do generally want what is best for you. Know that they care for you, and they fear for you. When they try to hide your differences, it is not (at least, not always) because they are ashamed of you or disappointed by you– it’s because they want to spare you the mockery and unkindness of the world. They want you to have a normal life because it’s the only kind of good life they know.

Parents: don’t wish for us to “pass.” Don’t wish for us to have a “normal” life. We will never be normal, and most of us don’t want to be. There is not a different person, a person without autism, hiding somewhere inside us. Yes, by all means, help us get treatment for the physical pain, the digestion issues, the sleep disturbances, and other symptoms that confer no benefit, but realize that these are not the core of what autism is, what the autistic experience is. Autism is a part of who we are, how we experience and process and interact with the world, and there is no cure for who we are and how we think– nor should there be.

We want to be ourselves, and we want to be accepted for being ourselves– quirks and stims and sensitivities and all. We can have good lives. We can learn and love and enjoy life and have successes and reach goals and build friendships and most of us can someday have jobs and degrees and families, too…. But we cannot do it the same way you did. We will never be like you. Our joys and fears and needs and loves are as strong as yours… but they are different, and you must accept them. Let us enjoy the things we want to do, and stop asking us to do the things we cannot.

Parents: it is up to you whether or not you are our enemies or our allies. Good intentions are not enough. Yes, we are asking a lot of you. We are asking you to change the way you think and perceive reality, and imagine a world in which “normalcy” is not the gold standard. We are asking you to be brave enough to be proud of our differences, to fight for our rights to live and learn and socialize and succeed in the ways that work for us. Work with us, not against us. Please.

Notes on my own experience of surviving depression

April 21, 2013 1 comment

The reality of depression is that it is a state in which your brain regularly lies to you. OK, let me qualify that, because the healthy human brain also regularly lies to us; it is, in fact, designed to do so, and the fact that it does so with such skill and efficiency may be one of the secrets to the success of the human race (google “optimism bias” if you’re interested in this).

The depressed brain lies to us in some very distinctive ways (leaving aside the hairy philosophical question of whether there is a “me” that my brain can lie “to”: short answer; there isn’t). It tells us that life isn’t worth living, that others hate us or look down on us, that we are worthless (or worse, burdens). It gives us certainty that we cannot succeed in our endeavors, that doing so would be pointless even if we could, and that there is no brighter tomorrow to which we can look forward, and it tells us these things with deep conviction.

These thoughts have no rational or logical basis, and as such, they are often relatively immune to logic. These are “gut” feelings, often of the same intensity as our other beliefs and our certainties about our own memories (which are, yet again, far from factually correct even in mentally healthy humans and possibly even more distorted in those experiencing clinical depression). These damaging thoughts repeat over and over, wearing deep grooves into our minds, getting us stuck in mental ruts so deep we cannot even see that we are in them. Attempts to argue our way out of them often turn into vicious cycles that spiral back down into the depths no matter which way we turn, and sometimes, the only way to get our negative thoughts off their track is to hit them broadside with the mental equivalent of a football tackle. I have been known to treat the words “my brain is lying to me” as very nearly a mantra on occasion. If I can focus on nothing beyond that one fact, I stand a chance against all the other terrible things I am so terribly sure of at that moment.

Many people who have read up on depression in order to better understand or help a suffering loved one have run across descriptions of this. But there’s something those articles often fail to mention, which is that talking yourself out of these self-destructive beliefs is a constant in the life of someone with depression. It’s not just once or twice or when we’re at our worst. It’s something we live with permanently.

Medication can help, and it can help a lot. Being in a better situation in our lives can help, but doesn’t always. Maintaining healthy habits of eating, sleeping, exercise, and self-care can help, but these are hard to maintain and even harder to start in the first place, and for those of us whose brains tend towards depression, a small slip in our daily routine can be the tiny chance our neurology was waiting for– we may teeter, overbalance, and plummet back to the depths. Most importantly, we can develop good mental habits. We can force our brains again and again into healthier patterns of thinking that make it easier to counter the negativity welling up within us. We can get better at recognizing the lies our brain tells us and refusing to believe them. We can build up reserves of good memories, good relationships, and other sources of strength to draw on in our darker hours.

But the struggle is always there. I am, currently, fairly stable on two medications, in a good place in my life (college degree– in psychology, no less!–, sufficient financial means, a solid romantic relationship), and a many-year veteran of mental illness with a good deal of practice managing my own disorderly mind. And yet, depression is never far away. It sneaks up on me in odd moments, at night in my dreams, in the mornings before I get up, when I make little mistakes, when I feel the least bit physically ill, when I skip a meal or don’t get enough sleep, when I worry, when I make the mistake of comparing myself to others, when I think about my future…

I have been depressed for many years. I have only very rarely been close to suicidal. The lies my brain tells me are not the enormous ones. I am grateful that I almost never consider life something that is not worth living. But I struggle. A little voice in my head says over and over, “why bother?” It says “You can’t succeed, so don’t even try.” It says “it’s not worth the effort.” Sometimes it’s not a voice and words, but an emotional weight that feels physical, that makes me hesitate for an instant before taking my next breath. That makes me turn off the alarm before I’m even awake because a little part of me is awake and doesn’t feel up to facing the day yet. That makes me want to lie down and rest, again and again, instead of doing something more productive.

I talk back to the lies. I convince myself to do things, to try, to socialize. I tell myself, “Do it! It will be fun!” and “You can make a difference,” and “It’s worth the effort to… eat, read, answer an email, call a friend, wash the dishes, get dressed on days when I don’t have to be anywhere, tell a joke, go for a walk, cook a meal instead of eating fast food, apply to that job, repaint the room…” any of the myriad projects, large and small, one-time or every-day, that so many people do without a second thought. I have to talk myself into them, again and again. I am my own coach, counselor, cheerleader, comforter, and conscience.

I can do it. And I do. But it’s a never-ending task, and an exhausting one. I have to answer the question “why should I bother?” sometimes multiple times per day. It is frustrating, sometimes infuriating. It takes my energy and it takes my time and it leaves less of those things for all the other activities listed above. Depression is a weight I carry with me nearly every day– not a huge one, not usually, but enough to cause a little extra drag, to slow me down, to cripple me just a bit (and as someone who works in the field of disabilities, I use the term “cripple” very deliberately here). Not even so much that most people would notice. Sometimes even I don’t notice, until those oh-so-rare moments when the weight lifts entirely, and for just a few days, or even hours, every action comes to me so easily that I cry at the difference between this feeling and my normal life.

***

This entry turned into something longer and more complex and far more unwieldy than I originally intended. I can only hope I have given some insight– both to others struggling with depression and to those lucky enough to be free of it– into the fact that surviving depression is a process rather than an endpoint. It is, I hasten to reassure anyone in doubt, completely and entirely worth it. My life may be an uphill struggle, but it is also rich with worthwhile goals, pride in my accomplishments of every size, great joys and tiny fleeting beauties. Every good story I read, every tasty meal I eat, every sunset I watch, every joke I laugh at, every moment spent with friends, every time I make someone else smile, every tiny thing I teach or even make someone else think about– these are the things I live for.

I have faith that these things will endure, and that I will encounter more of them in the days to come. And as an atheist and skeptic, I believe that I have only this one life, one single chance to experience what I can, to learn and grow and share and love and most of all to leave this complex, incredible, amazingly beautiful and baffling world, in some tiny way, a better place than I found it– and if there is such a thing as a sin, the only one I can imagine is to give up on that glorious opportunity. And so I will, in the words of Joseph Heller, “live forever or die in the attempt,” and no matter how difficult life is, I will cherish it, and never stop looking for ways to make it better.

More Language Development from Fishy!

Skills are funny things. Kids acquire them in fits and starts, lose bits of them again, develop bad habits along with good ones, and intersperse balky moments of complete obtuseness with unexpected flashes of pure genius. Anyone who’s ever tried to get their child to demonstrate a new skill on cue for camera or proud relatives knows just how frustrating it can be when you’re sure a child has learned something, only to have them look at you blankly when you provide them the chance to do it again.

Fishy’s language ability is like this. He has a stable vocabulary of 6-7 hand signs (some of which he occasionally confuses with each other, and 2 of which he rarely uses unless prompted), plus a reasonably good ability to select items by pointing to them, provided they are nearby. He can string together 2-3 signs in a row in little proto-sentences, and we generally speak his signs aloud as he does them, adding in syntax and prepositions and so forth as needed. For example, if he signs =Fishy= =want= [points to book], we’ll say “Fishy… wants… to read a story.” He often signs out of order at first, then corrects himself, so the above sentence would probably look like:

Him: =Want=

Me: “You want…”

Him: =Fishy=

Me: “Fishy… Fishy wants?”

Him: =want= =Fishy= =want=

Me: “Fishy wants… what do you want, sweetie?”

Him: [pause, then points to the book]

There might be even more mix-ups and repetitions before I finally get a full sentence. It’s made more confusing by the fact that he has no signs for “yes” and “no,” so if I misinterpret what he’s pointing to or guess incorrectly at his meaning, I don’t always know it unless I give him what I thought he wanted and he starts to fuss. Then we have to start all over. He is, on the whole, remarkably patient with me.

There are also a few signs that his ABA therapist uses with him regularly, prompting him to imitate her, both in sentences and in songs (like “Itsy-Bitsy Spider” or “Wheels on the Bus”). The first big piece of language development I witnessed was when he adopted one of these signs and began using it on his own in other contexts. The sign was =time=, which the therapist used in “time for a break” and “time to say bye-bye” at the middle and end of each session respectively.

Now, he uses the =time= sign to indicate wanting any activity to start or finish! Since he hasn’t seen so much of me in a long time, when I come over now, he spends a lot of time signing =time= (for) =Fishy= (and) [points to me]… especially if I start having a conversation with his parents or paying attention to his baby brother instead of playing with him!

More exciting still, Fishy has now invented a sign of his own. A few months ago, his parents and therapist began noticing him using a hand-sign they had never seen before, and he would sign =want= and then the mystery sign. He often did this often towards the end of his therapy sessions, when he gets to watch a video for a few minutes (he adores movies), so they wondered if it might mean “movie.” If it didn’t, they didn’t want to give him the idea, so they carefully watched when he used it for some time, and decided that it did in fact mean “movie,” and started treating it as such. Vocabulary by consensus– I think this is a common way for little kids and their parents to agree on what a word means (you decide your toddler means “bottle” when he says “buhbuh,” and so “buhbuh” becomes the word for “bottle” in your house, at least for a while).

This alone is pretty incredible, given the smallness of his vocabulary and how long it tends to take him to acquire new signs. But something even more amazing was about to happen. He’s extended that sign to further meanings. (He’s done this before with signs that were taught to him, adapting them as needed: =more= sometimes gets used to mean “yes,” =goodnight= can also mean “I’m tired of this activity and want to stop”).

I found this out while having lunch with him. He gets regular “snack” rewards for eating his lunch well. They used to be specific rewards for eating X number of bites, or other discrete steps, but now they’re treated more like dessert– he eats a reasonable amount, then gets to ask for a treat. When he signs for a =snack=, I offer him a choice between 2 of his favorites– bite-sized graham or cheese crackers, veggie puffs, gummies, or yogurt melts– and he points to the one he wants.

On this particular day, he kept signing =movie= and I was baffled. Movie time isn’t till evening, and as much as he loves them, he doesn’t usually start begging for them until fairly late in the day, or unless he’s sick, and never before in the middle of a meal. The sign was still relatively new, and I thought he might just be over-using it, as he sometimes does with new signs. So I kept prompting him “Movie? No, you know it’s nowhere near movie time. Do you mean you want a snack? Can you sign ‘snack’ for me?” And he would sign =snack= and then go back to signing =want= =movie= and I was utterly baffled.

Finally, he pushed away the snacks I was offering him and leaned WAY across the table and pointed at an empty container of a third type of snack that I hadn’t even noticed was there. And the light went on in my head. “Oh! You want one you like better! You were trying to tell me you wanted a different snack, your favorite snack!” I ran and grabbed a new container of those snacks and was rewarded with a huge grin when I offered them to him. So I think the =movie= sign also means “favorite thing” of any kind. And I think that Fishy is one smart cookie.

Why I write the things I do

So, I recently wrote a mini-article elsewhere (now available here: https://restlesshands42.wordpress.com/). I wrote the piece partly as a tongue-in-cheek parody of all the advice given about managing behavior in special needs kids… but I’m glad to see it being taken seriously as well.

The internet is full of information in the “autism community” (which consists almost exclusively of parents and professionals discussing autistic children) about how to “help” those of us who function differently, and how to love us unconditionally despite our flaws, and how to be “aware” of us, and especially how to change our behavior– kindly, lovingly, and with the best intentions.

But I see all this from the perspective of those standing in that spotlight (although I myself was lucky enough to grow up with a mother who believed wholeheartedly in letting me be myself and fought to put me in small private schools and other situations where I could function my best). And it’s an uncomfortable light to stand in.

When parents trade tips across the web on “managing challenging behaviors” in their kids on the spectrum, the AUTISTIC community (that is, autistic adults and young adults, and far more autistic children than neurotypicals realize are paying attention) sees a world that wants to fix us and make us into something other than who we are. We ask why we are always the ones who need to change. Why is foot-tapping (a common neurotypical stim) socially acceptable while rocking (a common autistic stim) is not? Why do parents and educators focus constantly on our differences and deficits rather than our strengths and joys? Why are we always the problem to be fixed, the burden to be endured, the puzzle to be solved, the ones who are “hard to love”?

Again and again, we press back. Echoing Amanda Baggs “In My Language” video (http://www.youtube.com/watch?v=JnylM1hI2jc) Julia Bascom writes “until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me” (http://juststimming.wordpress.com/2011/10/05/quiet-hands/). I wrote this article to remind neurotypicals to make that effort to move 3% of the way towards our world, towards our ways of thinking and communicating and interacting.

I also hope it will make them more aware that it is hard to do things in an unfamiliar way, to maintain constant awareness of your posture and words and how much noise you make. That it is frustrating and embarrassing to see yourself spoken of in clinical terms, to have your actions and interests dissected and discussed by all and sundry, to be singled out and put on display for simply going about your daily lives, pathologized for your personal quirks, medicated for your attempts to express yourself, misunderstood frequently, and constantly, constantly corrected.

And I wrote this for people on the spectrum, to remind them that they are not always in the wrong, that their needs are valid and should be respected, that it’s ok for them to feel confused and burdened and conflicted about their loved ones as well.

And I wrote it for all of us, to remind us that “normal” is not some objective gold standard that we should all struggle to achieve, but all too often a form of tyranny by the majority, and that creating a more equitable society requires that we take multiple perspectives into account when we decide what our gold standards should be. I wrote it to remind people that good intentions are not enough, and that just because something works for you doesn’t mean it will work for me. Being more “normal” would not make me a happier person, and if you try to force me to be more like you, it’s only going to hurt us both. So let’s learn to respect and accommodate each others’ needs. Let’s remember to make the efforts and the changes more mutual. And just maybe, we can build a world that isn’t so very frustrating for us disabled and neurodiverse folks to live in.