Things that need saying

November 21, 2011 Leave a comment

This blog is where I write primarily about disability rights from my own experiences as a person with disabilities and (more recently) disability rights activist. I also have a BS in psychology, with a concentration in cognitive and neuro psych.

Since graduation, I have worked as a psychology research assistant and as a caretaker for children with assorted developmental disabilities.

I am currently in the process of further editing this blog to ensure the privacy of everyone I mention in it. I am saddened to have to omit and change some details, as I greatly enjoy accurate descriptions, but with this blog slowly gaining more attention, I want to be certain that I do not violate the trust that families and friends have shown me in sharing their stories and letting me spend time with their wonderful children.

Sidelining and Silencing

Restless Hands:

Because these voices need to be heard.

Originally posted on Neuro Typical? No Way!:

My experience in being alistening_ear_198079n Âûtistic advocate is short lived thus far. I have not been in this game all that long yet. I am learning some big lessons pretty quickly at the moment, they are not necessarily easy to lear but they are important ones. There are a few unwritten laws that I am trying to get my head around. It’s not an easy thing for an Âû
tistic to get right this business of comprehending the unwritten rules, the unspoken things. It is in fact quite a challenge.

The first and possibly the most potent and easy to actually learn, but also possibly one that is not all that obvious at the start. This one is pretty simple but also pretty sad and heart wrenching. The lesson is that there is not one Âûtism community. There are multiple Âûtism communities and it seems they are far from…

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Fever Dreams and Philosophical Musings

Last night, I fell asleep with a mild fever. My life chased me into my dreams.

***
In my dream, my client breaks something while I struggle to help his mother in the kitchen. His ABA team makes him stay up all night cleaning, and in the morning a troop of therapists convenes to discuss how he needs even more ABA. I’ve met many of them before, but I’m having trouble telling them apart, and can’t decide which of them might be sympathetic to my objections.

I argue passionately for less ABA, more communication training. A supervisor sneeringly asks if I mean that faked “facilitated communication” nonsense. The scientists in the room shake their heads sadly. I respond that RPM leads to completely independent typing– look it up! I also point out that a lot of different things fall under the category of “facilitated communication,” mentioning a video I’ve seen in which the only “facilitation” necessary is a gentle hand on the back of the person typing. You can’t control what someone types that way, I insist– just try it! I volunteer to type while a scientist tries to control my typing with a hand on my shoulder. She cheats abominably, but still can’t force me to type what she wants.

The room grows fuller, as adults with physical disabilities arrive to make the point that being a disabled adult is not a horrible sentence. Almost every hand in the room is raised with points to make, and I have more to say but despair of being called on any time in the next hour…
***

Yesterday, in my real life, an ABA tech mentioned children who were getting 40 hours a week, plus other therapies.

I asked if she didn’t find that tragically sad– the idea of small children having to work more than 40 hours a week. She said she’d rather they had to do 40 hours a week now, and grow up to be functional members of society. (There was a time when I would have agreed with her. The ABA industry mixes up some strong Kool-Aid.)

I didn’t have a way to put my disagreements into words then– there were so many of them crowding my brain. I think I can do so now, though,

1) False dichotomy. There is plenty of evidence (some of it even in ABA studies) that ABA is neither necessary or sufficient for independent adulthood. In less technical terms: Some kids get lots of ABA and grow up to be independent adults. Some kids get lots of ABA and do not grow up to be independent adults. Some kids get no ABA and do grow up to be independent adults.

2) If you’re going to argue that ABA at least gives a better chance that the kid will grow up to be an independent adult, you’ll have to show me some darn good math. You’ll also have to take into account that scientific studies on autistic kids who grow up without ABA barely exist at all, and you can’t make a logical argument that one condition is better than another when you’ve only researched one of the two.

3) I’m also going to lay down some serious objections to the idea that a person needs to be a “functional member of society” in order to have a valuable and meaningful life. There are many people in my life who have inspired me, made my life better, or loved me, or who I have loved. None of those things has ever hinged on whether or not the person could earn a living, speak verbally, live independently, or pass as “normal.”

4) Even if I accepted the premise that ABA=independent adulthood, I would still object. Because, “functionality” at what price? The price of a childhood? An individual’s personality? Their self-esteem? Their happiness? I would not sacrifice any one of those things, and I have known and read about autistic adults who believe that ABA stole those things from them. That alone should give anyone pause– and I do think that if most parents and therapists and ABA techs were truly aware that this was the potential trade-off, they’d hesitate, too.

There’s more to becoming a well-rounded adult human being than learning to sit still or tie one’s own shoes or participate in social niceties. There’s emotional development, and I believe that childhood– an unfettered, exploratory, play-filled childhood– is an integral and irreplaceable part of that development. For counterexamples, look at the emotional damage done to children who lost their childhoods too early– to abuse, to war, to parental drug abuse, to any of the things that make children grow up too fast. There are an uncanny number of similarities between adults from abusive childhoods and adult autistics– and all too often, those are one and the same. And frequently, that abuse has, at least in part, taken the form of a relentless battle on the part of adults to turn the autistic child into something they are not and can never be– a non-autistic adult.

So, if those are my options, I will happily volunteer to change an autistic person’s diaper every day for the rest of my life, or cook their meals, do their shopping, help them cross the street, or whatever other “functional adult” tasks they can’t do alone. Because I love the children I work with, exactly the way they are. And while I do want to help them acquire as many skills as possible, I wouldn’t do it at the price of changing who they are, losing their sense of fun and humor, or making them feel that they aren’t good enough, or teaching them that behavioral control is more important than their comfort, their safety, their right to communicate naturally, and their happiness.

Small Miracles

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.

Struggling/For the Children

July 9, 2015 1 comment

I haven’t written much here lately. In part because my general brain energy has been at a low ebb, and partly because it’s gotten harder. Looking back at my older posts, sometimes I feel sad at how they now feel naive and optimistic in some ways.

My job has gotten harder. Not because of the clients, but because of the rest of the world. Parents, therapists, siblings, barriers and obstacles, institutions of thought and culture and society… And it’s much harder to write about my work when I have things to say that aren’t as positive. Sharing the good times is easy. Sharing my mistakes feels useful to myself and others. Sharing my good ideas is gratifying. Talking about the hard parts is… hard.

I know the parents of my clients love them greatly. I know these situations aren’t easy for anyone involved. But I need to write the following letter. I’ve been needing to write it for a while now.

A quote comes to mind: “The names have been changed, but the stories are real.” The following was inspired by many situations, with many different children.

***

Dear Child,

Once, while jumping, you accidentally head-butted me so hard that my jaw throbbed for a week. Hearing an adult call you “stupid” in a moment of anger hurt worse….

…You bit me, hard enough to bruise, and while the other adults clustered around asking if I was ok, I was worried about you, and what could have made you miserable enough to injure me…

…You frustrate me at times. You throw tantrums, throw objects, break things, hit and kick. I’ve lost my temper and yelled at you on more than one occasion. But nothing you’ve ever done has made me as angry as when your sibling wished– out loud, in front of you– to be an only child…

…You’re rougher than you mean to be, and your clumsy attempts at friendly interaction have made me wince all too often. What feels worse, though, is the fact that I wince or flinch against my will– I don’t want you to know that you hurt me, because I know you never mean to. I’d happily suffer more pain to see you smile…

…Once, after a therapy session, you punched me in the stomach for taking away the cookies. Your small fist didn’t hurt me. The pain and frustration in your eyes, however, left a wound that still hasn’t healed. I would rather be punched again than see you cry.

All of you: you have my sympathy, you have my unconditional love, and you have my complete forgiveness for any injury you have ever caused me. And you always will.

A Call to Action

June 29, 2015 1 comment

No one wants to admit this. There is a crisis in this country and across the world. An epidemic, if you will. There is a terrifying large percentage of people with a certain disorder of brain function that involves major deficits in many key areas– including sensory perception, attention, reasoning, communication skills, the ability to prioritize appropriately, and expressive empathy (the ability to respond appropriately to the emotions of others). No one knows for sure what causes this disorder, but both genetics and environmental factors seem to contribute strongly.

These people need our help. Without intensive intervention, most of them will never recover, although some do improve greatly over time on their own. Unfortunately, very few of them are aware that they need help, and even fewer accept that help when it is offered. Teaching them is a long, laborious, intensive process requiring massive amounts of repetition. They just don’t listen. Even when we carefully tailor lessons to their learning style, they learn so slowly, and are so resistant, that it is easy for us to want to give up on them altogether.

We must not give up. These people require billions of dollars worth of services every year. They waste much of their time on worthless obsessions and activities that are useless at best and outright harmful to themselves or others at worst. And while most of them are non-violent, far too many cause serious stress and even pose a physical danger to their families. Many of them become aggressive when asked to change even minor habits and beliefs.

Despite the vast amount of scientific literature on this population, we’ve made very little headway in terms of developing effective strategies to change their problematic behaviors. I should acknowledge that not all people with this disorder demonstrate those behaviors. Some are very high functioning– we tend to see them as quirky rather than burdensome. Others, however, are a serious challenge.

Something needs to change here. As hard as it is for us, as frustrating and heart-breaking as it is to reach out, day after day, to people who seem to have little hope of responding, we cannot simply give up. We need to put serious money towards research, towards training educators and therapists. We have to find a way to help these people become functional members of society, who contribute to the greater good and are no threat to themselves or others.

This tragedy must be halted in its tracks. Help fight the ravages of neurotypicality. The well-being of our children, our nation, even our planet, depends on it.

Crossing the line: The Danger of Compliance

Restless Hands:

I… wow. Just wow. This is important.

Originally posted on Thirty Days of Autism:

As Amy Sequenzia so eloquently states: “ABA is not only abusive to Autistic children, it makes ableism and abuse acceptable. “Experts” want 40 hours/week of this and parents who don’t comply can lose their children. ABA creates a culture of normalized abuse.”

~

The following is a guest post composed of a series of writings by Bernice Olivas, who has generously agreed to share her experience. Hers is a harrowing story, but one that illustrates the dangers of demanding compliance on so many levels – and it is a story that needs to be understood.

It’s been two years since Nebraska’s Child Protection Services threatened to take away her children because she refused to place them in full-time (40 hrs/week) compliance-based training.

She and her husband were never accused of abuse or neglect, the only reason CPS was involved with her family was because her children are autistic and some…

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Restless Hands: Acceptance, Love, and Self-care: #AutismPositivity2015

May 15, 2015 2 comments

Scattered memories:

…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

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