It’s almost April, and you know what that means. “Autism” is the word of the day. Speaking of words, many of us were told:
“Sticks and stones may break my bones, but words can never hurt me.”
I think we all know that’s not true. Words can hurt a lot, even words that aren’t meant to be hurtful. So I want to talk about words.
If you are planning to raise awareness about autism this April, please remember: children and adults diagnosed with autism will be listening to your speeches and reading your blog posts and articles. This means your kids. If not your kids, someone else’s. And they often hear or read words like “tragedy,” “crisis,” “burden,” “expensive,” and “stressful” when describing their lives.
These words can hurt feelings and damage self-esteem. They can make children feel guilty and miserable, because something about them– autism– causes so much trouble and unhappiness. They might even wonder if their families would be happier without them. And no child should ever have to wonder that.
I’d like to suggest some other words to use.
- No one wants to be part of an “epidemic” or “public health crisis.” Instead, say “many more people are now being diagnosed with autism.” Also, please don’t compare autism to life-threatening illnesses like cancer. It isn’t fair to either autism or cancer.
- Many people argue about whether to say someone is “autistic” or a “person with autism.” Read arguments for both sides (the formal terms are “identity-first language” and “person-first language”), especially ones written by people with an autism diagnosis. If you are speaking about a particular person, ask them which term they prefer. Saying that someone is “on the autism spectrum” is usually a good compromise. Please don’t say that someone “suffers from” autism– it’s just too depressing!
- Instead of saying that autism is costly, stressful, and a burden on families/society, talk about how to make things better! Say things like “autistic people and their families need our support and understanding,” “people on the autism spectrum deserve access to more services and opportunities” and “we can all contribute to a better future for children diagnosed with autism.” Remind the public that proper education and work accommodations pay for themselves because they allow people with disabilities to live more independent and productive lives. Most importantly, remember that finding happiness and meaning in life are possible for all human beings, no matter how severely impaired.
- Suggest ways to help in your community. Encourage local businesses and organizations to plan autism-friendly events. Remind people to be patient and sympathetic when they see someone having a meltdown. Promote jobs for people with disabilities. Give money or technology to special education classrooms. Donate a book by an autistic author to your local library. Sponsor a disability-rights lawyer or expert on disability services to speak at a public event. Fund a field trip or summer camp for kids on the spectrum.
- Share positive stories. Every life has success stories and wonderful moments. We see great strides forward in the world of autism every day. Young people like Carly Fleischmann, Ido Kedar, Dillan Barmache, and Jordyn Zimmerman are changing our understanding of autism, showing us how much is truly possible even for those who are profoundly disabled.
Create hope, not despair. Spread love, not fear. Move beyond “awareness” and aim for acceptance and inclusion. Our children are worth it.
Here’s the flip side to my last post. Here’s what makes this job worthwhile.
Yesterday, an autistic child whose average attention span is about 30 seconds curled up next to me on the couch and let me read almost 30 pages of “The Reason I Jump” out loud.
Yesterday, a girl who generally insists on my undivided attention and loses her temper at the drop of a hat let her sister select several songs in a row without resorting to violence.
Yesterday, a mother who is very strict and concerned with appearances in public lay down on the bedroom floor with her son to cuddle. They were both smiling blissfully.
Yesterday, a parent apologized for interrupting a disabled child’s conversation.
Today, I watched an autistic child tolerate, with good humor, the fumbling attempts of an ABA tech to engage in play-based interaction. The parents are being patient, hoping that they can teach the neurotypical tech how to better interact with autistic children. The kid is being a good sport about it– probably better than I would have been. I think this also answers my question about whether ABA can be totally benign: yes, so long as the family knows what boundaries to set and teaches the kid not to take it too seriously.
Today, a mother felt renewed hope for her child’s future.
Today, the most profoundly autistic child on my roster did so many things I’ve never seen before that I stopped counting. Among them: voluntarily paid attention to something an adult was showing him, used the toilet without prompting, calmly tolerated multiple adults conversing in his presence, shared a trampoline and eye contact with another child, and held a vocal (though not verbal) conversation with the same child.
Should I call these small miracles? Small miracles can be huge. In fact, they are everything.
…He meets me at the door, eyes wide. Takes my hand, looks into my face intently, bounces up and down in place. I give him my biggest smile and squeeze his hand. “I’m happy to see you, too” I tell him. Later, I read to him, ASAN’s “Welcome To The Autistic Community (Adolescent).” He doesn’t usually want me to read to him for very long, but this time he doesn’t interrupt me at all…
His flapping hands and bouncing feet are so beautiful to me.
…Another day, another child. I spend the afternoon pushing him on a rope swing in the backyard– around and around he goes, shrieking with happy laughter. Then he gets down, gestures emphatically. “You want me to get on the swing?” Nods. I try to refuse– I’m too big, too old. He is firm. He wants to share, to give me a turn me to experience what he did. I get on the swing and he pushes me, intent on his task. I smile, I laugh, I get dizzy. He laughs with me. I thank him for his insistence that I try….
His solemn demeanor and meticulous nonverbal instructions are so beautiful to me.
…Yet another day, another child. “You want to leave already? I don’t know what’s wrong!” says a mother as her son tugs her towards the door of the arcade room, “I thought he liked it here!” I am surprised– she doesn’t see what I see. “He does like it here,” I explain “But he’s feeling a little overwhelmed and needs to be somewhere quiet for a few minutes.” I lead him to an unused room. He lies on the floor, cool linoleum under his hands, gazing out the window through dark lashes. I sit beside him quietly until I see the tension leave his body. I stand, offer him a hand. “You ready to go back in?” After a moment, he takes my hand, gets up, and we walk back into the arcade together…
His hummed tunes and verbal sound effects are so beautiful to me.
…And yet another. It’s her birthday and I sit next to her on a large trampoline while small children clamber all over me. She bites a stuffed animal happily on the nose. The younger girls do tricks, reminding each other to be careful around her– she’s bigger than they are, and much clumsier, prone to unexpected movements. Indoors, I catch her hand heading for a bowl of dip. I help her sit, feed her bites of chips and dip. She grabs for a strawberry daiquiri that one of the parents is drinking. I laugh and ask her mom to fix her up a non-alcoholic version. Gluten-free brownies stand in for chocolate cake. We all sing happy birthday and she claps her hands…
Her happy shrieks and shaky hands are so beautiful to me.
Every one of these kids is nonverbal and considered “seriously” disabled. I consider myself profoundly lucky to have them in my life. And I will speak up for them, for their needs and rights and desires… because, while I am not and have never been “seriously” disabled, I know what it’s like to /need/ a few minutes away from the sound of other humans… To make a sound over and over just for the fun of it… To express excitement with my body instead of my voice… To have to fight my own body sometimes…
We all have the right to learn in a way that makes sense to us, to live in an environment that doesn’t hurt us, to be part of a society that accepts the things we need in order to be safe and healthy and happy and whole. We deserve to be ourselves, our whole selves, and to be accepted for it even when we are not understood. We deserve to be loved for our quirks, not in spite of them. There will always be problematic systems and problematic people in our lives. But my greatest wish for every autistic person is that at least one person close to you, in your life, appreciates how wonderful you are, exactly the way you are.
Because flapping hands are beautiful. And nonverbal communication is beautiful. And sensory obsessions are beautiful. And trying your best is beautiful. And enjoying yourself in ways others don’t understand is beautiful. And sharing those experiences with others is beautiful. Quirks and tics and routines are beautiful. And so are all of you.
*** read more posts at https://autismpositivity.wordpress.com
[This is a long overdue repost from my old blog. It is both satire and very serious. It is satire in that it is very closely modeled on actual articles I see frequently online, and it borrows much of the tone and phrasing of those articles. It is serious in that I very much hope it will make the people who write, read, and share those articles think a little more deeply about what it feels like to be one of the people that those articles are about. It is also serious in that it is legitimate and honest advice for autistic people who find the actions of non-autistic people stressful and exhausting– as most of us do at times. We, as much as anyone else, deserve to have that stress and frustration openly acknowledged. But I also hope that by turning the spotlight back on the majority, I can make them a little more aware that even their gentlest and most loving advice can feel very uncomfortable to those being singled out as the cause of that frustration.]
Many neurotypical adults have behaviors that the rest of us find difficult to handle. These people are generally unaware of the stress their challenging behaviors cause for autistic friends and family members. Even the most patient autistic people whose loved ones have challenging behaviors may become frustrated and find their time and energy greatly taxed by the demands of dealing with these behaviors regularly.
Challenging behaviors in adults include insistence that others make eye contact or physical contact with them frequently, difficulty understanding non-speech communication beyond certain stereotyped facial expressions, difficulty tolerating stimming and echolalia, narrow perceptions of what constitutes “learning,” “empathy,” and “age-appropriate behavior,” inability to recognize the sensory needs of others, and obsession with social rituals.
How to positively address challenging behaviors in your friends and family members:
1) Gently remind them that their ways of communicating, learning, succeeding, and socializing are not the only ones.
2) Regularly let them know (preferably in carefully chosen verbal or written words—remember, they respond best to “polite” requests) when their behaviors are impeding your sensory processing, communication, de-stressing, executive functioning, and other important aspects of your life.
3) Be willing to repeat this information for them as needed. Remember, very few neurotypicals have the precise memories many of us take for granted.
4) Be patient and understanding. It can be hard for neurotypicals to grasp the importance of special interests, the joys of sensory play, or the irrelevance of their social games and hierarchies.
5) Remember to love your neurotypicals, and focus on their good points. At the same time, practice self-care. While your loved ones never mean to be a burden, dealing with them alone for long periods of time can be exhausting and stressful. Remember to take time for yourself, be firm about your own needs, and recruit a good support network to help you manage the challenges that neurotypicals bring into your life.
(So, it would have been nice if I could have written this for the Autism Positivity flash blog, or Blogging Against Disablism Day. But life doesn’t always work out that neatly, and I only saw the TED talk two days ago and the words to respond didn’t come to me until now. I’m tagging it for those days anyway, even if it is a week late)
So, for all of you out there wondering what we should “do” about autism, STOP. Just stop right there.
Because you shouldn’t DO anything ABOUT autism– you should do something FOR autistic PEOPLE. And what you should do first and foremost is listen.
They will tell you, in words and text and pictures, that they don’t want to be fixed, don’t need to be cured, and above all, fear being prevented.
Those who struggle to speak have thoughts and feelings and lives every bit as valid as your own. They think things like:
We are not lost.
We are not missing.
We are not a mystery.
We are not broken.
We are not incomplete.
We are not worth less than any other person.
Don’t push us away.
Don’t try to get rid of us.
Don’t try to change who we are.
If you still our hands, you stifle our voices.
If you emprison our eyes, you oppress our hearts.
If you teach us self-hatred, you keep us from our dreams.
If you try to make us just like you, you will lose us twice over, for you will destroy the person we truly are in search of a person we will never be.
…I had to leave a party today– a calm one– after less than an hour. The sound of Fifteen Voices in one house– talking, laughing– hurt me so much I felt physically ill…
…Earlier in the day, I went to a classical concert, and sketched the images that came to me with the music…
…I wouldn’t know fashionable if it bit me on the ankle…
…I am moved to tears by the beauty of car tailights…
…my hands flicker in joy at the feel of pine needles, of sea-smoothed stones, of velvet and fringes and tinsel and silk…
…I take words too literally, sometimes. I have to ask, often, if someone is joking…
…I seek out foods with interesting textures…
…I collect shiny bits of paper– shiny bits of anything, really…
…I hate shopping malls with a passion. Too much to see, hear, smell, too much, TOO MUCH TOOMUCHTOOMUCH…
…”Weirdo,” they called me in grade school. “Oddball. Freak.” The adults were more polite. “You’re so unique,” they’d say to me, “so interesting“…
In the video (and many others like it) the doctor describes a nonverbal boy who cries and screams and rocks and flails in frustration, even hitting his head, even hurting himself. Her voice is resonant with shock at the tragedy. Another boy, she says, “shuts down” when he is overwhelmed. Sure, he’s smart, but he struggles with socializing, with Making Eye Contact (the Holy Grail of Western Civilized Behavior). Her voice is rich with sympathy, with pity. She dreams of something to make these boys Normal, to make them Speak and Look and Act like herself and others like her. Maybe, she says, with coaching, the shy, withdrawn, smart boy could even… date! The audience laughs kindly, applauds politely. How nice that would be, they think.
Did the doctor (and so many others like her) ever ask these boys if they want to be normal? Whether or not they are unhappy, and if so, why?
When she talks of searching anxiously for the genes that caused their existence, does she think about how this might make them feel? (How eager we are not to have any more like YOU!)
Perhaps she knows that these boys have strengths and joys, too, but it would never occur to her that their weaknesses and struggles and flaws are every bit as human as her own, every bit as acceptable, every bit as undeserving of shame. Who among us is perfect, after all? Such a person would be truly inhuman.
I have more news for her, and for others like her.
Those people she talks about, those AFFLICTED with autism spectrum disorders… they learn and grow and laugh and love. They go to school, to college– often!– and even to grad school. They hold jobs, many of them. They fall in love, get married, have children. Yes, even those who bang their heads and flap their hands, those who didn’t speak until years after their peers. Delay does not mean inability. Atypicality is not synonymous with failure. Doing things in an unusual order or unfamiliar way doesn’t mean you can’t do them at all.
Those of us who struggle with “normal” socializing — junior high’s freaks and geeks– make deep, solid, long-lasting friendships, often with others like us. Sometimes we oddballs band together and do amazing things. You’ll find us in the chess club, and the theater groups, in musical ensembles and computer programming camps. We hang out with other minorities, with the outcasts and fat kids and bookworms and cripples and queers and those who live between cultures and feel out of place. We find strength in our struggles. We draw insight from our outsider perspective. We are often kindhearted, as we know what it feels like when others are cruel.
And many of us love our lives. Those of us who rock and wail and flee from crowds and dig our nails into our hands until we draw blood… we do not hate ourselves unless you teach us to. Being strange has as many perks and privileges as it does drawbacks. The same sensory sensitivity that makes us cry in the supermarket allows us to hear the music in a single drop of water ringing against a glass. The obsession with detail that makes us line up our pencils Just So and count every crack in the sidewalk can make for brilliant scientists, mathematicians, artists.
I don’t have an Autism Spectrum Diagnosis. I may or may not qualify for one– I still do not know.
My housemate does have a Diagnosis, and so do the majority of my friends. So do many of the children I work with professionally. I love the kids I work with. They all remind me (a little bit, in various ways) of myself.
I wouldn’t wish for any of us to be any different than we are.
I hope for more people like us in the future.
I hope for a world where we are accepted and loved, where our weaknesses are supported with compassion (not pity), our strengths are encouraged to grow and shine, and our innate value as human beings is never questioned.
Please don’t seek a cure for autism. Seek a cure for ignorance, for misunderstanding, and for intolerance.
Autism is not a disease, it is merely a difference that a minority of people are born with. Help us learn to fly, and watch us soar.
If you want your autistic children to grow up and be happy, then you need to start listening to them, and to the autistic community as well. When you ignore autistic adults and our opinions, you are adding to the system of oppression that your child is going to face for the rest of their life.