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.
Good news and bad. Successes and frustrations. We take steps forward and steps back. Sometimes we fly. Sometimes we fall.
I accompanied a client to the Get Air trampoline park a few times recently. They offer support people free admission with their clients. And one time, when my the client declined to go on after we had paid and entered, the staff gave us a voucher to come back and try another time. Which we did. And had fun. (In the meantime, my wrists got sore pushing him on the swing for a whole hour. It was worth it to see the smile that lights up his face when he feels comfortable.)
Unfortunately, Sea World here in San Diego has stopped issuing the disability passes that allow the escort/assistance person free entry. Which is a real pity. Fortunately, another one of my client families still has the old pass.
So that client and I went to Sea World, and more and more often I find myself thinking of him as my friend, rather than my client. A friend is someone you enjoy hanging out with, right? Someone whose intentions you trust (over-all, if not at every given moment). Someone you want to make happy, and who does nice things for you as well. So yes, by these criteria, this nonspeaking grade-school boy is my friend, even though our relationship is not one of equals, both because I am an adult and because I am his professional caregiver.
We’ve gone to Sea World before, with his family, but this time it was just the two of us. This was a very different experience. With just us, there is less talking, more flapping and bouncing. Less scheduling and more wandering. Less of me holding his hand (he’s older, now, too, and much more aware of his surroundings than he was even six months prior). More of me letting him lead (he knows the place much better than I do, after all). We got lost a few times (or maybe we went around the long and repetitive way on purpose. What do I know?), but we eventually ended up wherever he wanted to be. At least I think so. Sometimes I’d bring him over to a map and ask him to point to what he wanted. Sometimes this worked. Sometimes not. He was patient with the fact that I’m terrified of the Sky Ride. I know it’s one of his favorites, so we went on it anyway. But only once.
There were a few rough moments, including a minor meltdown/explosion on his part, for perfectly valid reasons. No one got hurt, and the only damage was to some food items. Then he opted to go into a quiet exhibit and watch the fish until he felt all better. I didn’t talk to him any more than necessary or make any demands on him while he was recovering. There were some awesome fish at the exhibit. Also turtles of various sizes. We were each excited about different fish, but shared a fascination with the electric eel. It was very big and ripply.
Throughout the day, we got some confused or surprised looks, but no disapproving ones, at least not that I saw. Both the staff and our fellow visitors seemed unsurprised by his buzzing hands, assorted vocalizations, and sudden detours. Sometimes we even got smiles. I guess increased autism awareness isn’t always a bad thing, at least not anymore. When he was jumping up and down blocking an exhibit and I said to the woman waiting to see, “Please excuse us, he needs a few minutes to calm down,” she simply said there was no need to hurry. It’s hard to imagine getting that response a number of years ago. I’m sure some places and/or people would still give us a hard time. But not that day.
There are the little moments of coded recognition, too. No one there ever used the words “autism,” or “nonverbal,” or “disability.” But there was the exhibit guide who mentioned that she enjoyed seeing such a wide variety of people every day. I have no idea if she was referring to my client in particular, but I wouldn’t be surprised. I was certain when the woman behind us in line for a ride, with an obviously highly distractable younger child, said sympathetically, “Waiting is hard, isn’t it?” that she had recognized something familiar. “Especially for this one,” I nodded, giving his shoulder a reassuring squeeze. “This one, too,” she said, smiling at the child by her side. And I knew that we were each accompanying a child who had a diagnosis that made them something of a square peg in a world full of round holes. We had adjacent cars for the ride, and both kids grinned ear-to-ear and shrieked with delight as we spun through the air. My legs were a bit wobbly as we dismounted, but we didn’t even have the chance to say goodbye– we were already racing off to the next adventure, and I suspect they were, too.
We both had to make some compromises. I vetoed the cotton candy, and he would have liked to stay longer and go on more rides. For my part, I would have liked to watch some of the animals for longer, and avoid some of the more crowded spots (not to mention the Sky Ride). But all the same, I can’t think of anyone else I would have rather gone with. I was strongly reminded of a blog post in which an autistic mother talks about her surprise when she realizes that not everyone envies her for her autistic children and the fun they have together. I almost felt sorry for the other visitors, who were obviously missing out on the great experience I had.
On our next outing, we’ll be going to the San Diego Zoo. I’m looking forward to it. And I just can’t understand why more people don’t enjoy the company of autistics.
Because these voices need to be heard.
My experience in being an 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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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.
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.
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.
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.
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.
I… wow. Just wow. This is important.
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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