This blog is where I write primarily about disability rights, both from my job and from my own experiences as a person with chronic illness.
I have a BS in psychology, with a concentration in cognitive and neuro psych. Since graduation, I have worked as a psychology research assistant, tutor, and as a caregiver for children with assorted developmental disabilities. This last is my true passion, and this blog is written largely on behalf of the wonderful children and young adults who are my clients.
A note: as they say, “the names have been changed, but the stories are real.” I have altered many details in my posts to conceal the identity of my clients as much as possible. And dialogue is generally not exact, as my memory is, well, memory. However, I have not made any of these stories up. These are all things that happened, both the good and the bad, the heartbreaking and the incredible. Such is life, particularly where children are invovled.
Warrior Mom: it’s a title many parents claim proudly, and a term most autistic people react to with horror and fury. Why?
Well, let’s start with the dislike. Many in the autistic community associate this term with a particular (and largely American) parent community that refuses any concept of autism acceptance. In this model, mothers are waging war against autism itself, avidly seeking cures and preventions, viewing their children’s condition as tragic and wholly undesirable. Autistic people, understandably, view this as a war against them, their very existence. It hurts to think that their own parents wish that they had been born different… even if it is only to spare them the struggles they face. They hate the implication that parenting autistic children is inherently a struggle, because that makes autism itself seem like a horrible thing. There has been a lot written about this elsewhere, so I won’t belabor the point.
But there’s another interpretation of the term “warrior mom” as well, and I think it’s a valid one. The distinction is crucial: both see themselves as fighting for their children, but while one type is fighting to “fix” what is “wrong” with their children, the other is fighting for their children’s right to exist as they are and have the best possible autistic life.
And it is a fight, make no mistake. It’s hard enough to give any child a good life, but parents of disabled children must go far above and beyond. I see many of my clients’ families waging this war constantly — and yes, usually it’s the mothers who are on the front line. This is a war against the judgment of strangers and family members alike, against school systems that drag their feet on providing reasonable accommodations, against professionals skeptical of these kids’ talents and potential, against bullies of all ages.
These moms are warriors because they make millions of phone calls trying to get through to someone who can actually make a positive difference in their kids’ lives. They are the ones calling for IEP meeting after IEP meeting, just trying to get their child into a classroom that doesn’t make them miserable. I see mothers who don’t speak English as their primary language struggling through legal papers trying to make sure they don’t miss a single accommodation their child has the right to have. They take time off work for classroom visits to make sure their kid is being taught at an appropriate academic level.
These moms are tenacious. They spend years clawing their way up waiting lists for the best PTs and OTs and accessible summer camps and the teachers that other families love. They drive for hours to visit the one provider who is actually helping their kid’s digestive problems, then spending another two hours on hold trying to convince their insurance company to cover the visit. They fight their homeowners association or landlord’s rules so that their kid can have a trampoline or kiddie pool or companion animal or whatever they need.
These moms endure a lot. People yell at them for not “controlling” their child, kick them out of places for being disruptive, and deluge them with well-meant but infuriating advice. They often have to fight against their own personality or their own cultural norms in order to advocate for their children. The work is, of course, worth it — but that doesn’t make it any less exhausting, intimidating, or overwhelming.
So this is why, unlike many in the autistic rights community, I don’t automatically get angry when I hear terms like “warrior mom” or “super-mom.” Because plenty of mothers truly deserve those titles, for reasons that don’t reflect negatively on autism at all. So let’s put the blame where it belongs: on the society and systems that make life harder on all of us, autistic people and parents alike. And let’s work to change it. Because no mother should have to become a superwoman just to get their children’s needs met.
I don’t often get around to posting about current events, but this time I will.
Those were human beings, every one.
Every Black victim, every cop, every protester, and even the shooter. Those were people. Every single one was somebody’s baby once upon a time. Every one of them laughed and played as a child. Every one of them has loved someone — a parent, a friend, a mentor, a lover, or a child of their own — at some point in their lives. No matter what else those people did and thought and believed during their lives, they were humans, one and all.
Every death was a tragedy.
I’d like to start off by saying I’m sorry for calling out a total stranger in this post.
I know there are parents out there who will wonder why I’m picking on a mother whose intentions were obviously good. And there are autistic people who will think I should be much harsher in my judgement, who will want to remind me that good intentions are not enough to excuse hurtful words.
But this isn’t about a person. It’s about an action. You could even call it a behavior. This mother did something hurtful without being aware of it, and I had to bring it up, to caution others against the same mistake.
It’s a chilly day, but my client’s grandfather takes us to the beach anyway. She loves swimming, but also enjoys just playing in the sand. This is one of my “severely autistic” clients– 9 years old and completely nonverbal– no speech, no sign, very occasional use of a handful of words via iPad. She’s clever, though. But then, I think all my kids are brilliant
We put out a picnic blanket, and we play. We make a big pile of sand and take it down again. She rocks and flaps and squeals with delight. Because she’s generally very sensitive to touch, it’s never occurred to me to offer her any physical contact besides the basics– holding her hand, helping her dress, that kind of thing. But her grandpa comes over to tickle her, and to my amazement, she loves it. So I tickle her too, and the three of us laugh.
It’s a late autumn day in San Diego, and there are plenty of people in the water despite the cold: surfers and boogie boarders in wetsuits, a handful of children playing in the shallows. A boy about the same age as my client has finished swimming and sits a few yards from us with his mother, wrapped in a towel.
His mother comes over, and I’m a little surprised when she speaks to me.
“Hi! I’ve been watching you playing with your daughter, and I just wanted to tell you that you’re doing a wonderful job,” she says, “My son is like her, and I know that it can be so hard. But you’re doing great.”
I know. She meant it as a compliment, and as a moment of parental solidarity. She was thinking that I probably get a lot of weird looks or glares or criticism from other parents, and she wanted to offer me something different. And I appreciate that.
But there’s one problem, and you may have missed it.
She said that it was “so hard,” obviously referring to raising an autistic child. That’s unfortunate, but understandable. Raising any child is hard, and raising one with disabilities is often harder. Or maybe she didn’t even think it was that hard, but assumed I did.
That wasn’t the problem.
The problem was that she said it right in front of the child she was referring to.
In front of a child who cannot speak in her own defense, cannot ask for reassurance that she’s loved, cannot ask “what did that woman mean when she said…?” A child who has probably overheard a million times that she is difficult, or a problem, or heartbreaking, or any number of other variations on the same theme.
And that is unacceptable.
I know it wasn’t meant that way, that the mother had no intention of hurting the girl’s feelings. She probably didn’t realize even it could hurt the girl’s feelings, and that speaks to an even bigger problem.
She just assumed that the child in front of us couldn’t understand, or wasn’t paying attention. Maybe the girl was looking into the distance and humming, which typical kids do when they are not paying attention. But most likely, it was just the fact that the girl was obviously autistic. That alone was enough to make this mother fail to notice that she was saying something hurtful in front of the person she was talking about.
This tendency to talk about children in front of them isn’t limited to autistic kids, I know. Plenty of adults talk about neurotypical kids, too, and say unkind things in their hearing. That isn’t right either. But disabled children are so much more vulnerable, so much more likely to overhear that they are a burden, a tragedy, a hopeless case. That parenting them is so hard. And they take it to heart.
I suspect most of us remember how awful it felt to disappoint our parents, or make them sad, or believe that we made life harder for them. Do you also remember how easy it was to get that impression from a single sigh of frustration, a shaken head, a few snappish words? How long did you worry and fret over a single criticism or an argument you overheard your parents having? What if people often said you were so hard to raise?
How often does my client hear that? How much does she understand? I have no idea. But I’m pretty sure it’s more than most people think. And because she has no way to tell me, I must assume she is understanding, paying attention to, and worrying about everything.
I wasn’t about to get into all this while babysitting, especially since that conversation might also hurt my client. So I did what I always do at times like this. I did my best to counteract any possible negative effects. I gave my client a huge hug and a big smile.
“Actually,” I told her, “I’m not her Mom, I’m her aide. And she is the best kid ever! I adore getting to spend time with her. My clients are all wonderful kids and I’m very lucky to have them in my life.” There was a brief pause, as (I suspect) each of us considered our own surprise at the other’s words.
We exchanged another pleasantry or two about how much the kids love the beach, how soothing the water is for them, then said goodbye. But the experience left me feeling shaken. Shaken by how easy it is to overlook something like this, how often our words have impacts we never consider.
So please, pay close attention to your words. Assume your children, your clients, your students are always listening. Assume they understand everything you say. Think about how you, as a child, would feel if someone spoke those words in front of you. Around nonverbal kids in particular, be vigilant. Someone’s self-image may depend on it.
(The following essay is satire. It is intended to have a humorous effect. However, like other satire, it is also intended to make you think seriously about the issue at hand.)
(It is also not intended to shame anyone, neurotypical or neurodivergent, or mock their emotional needs and preferences. The topic was chosen because many people, particularly neurotypical people, engage in this behavior without needing to, and often without even being aware that they are doing so. There are also strong and largely unexamined cultural norms about these behavioral patterns, and I do wish to call those into question by describing this behavior as an outside observer might.)
Paper proposed for inclusion in the Journal of Neurotypical Studies:
“Behavioral Manifestations of Perseveration on Appearance: Appearance Fixation Disorder in American Neurotypicals”
The majority of neurotypicals display obsessive behavior regarding personal appearance. This can range from moderately stubborn preferences for certain colors and hairstyles, which generally do not interfere with normal life activities, up through very expensive and time-consuming shopping, personal grooming, and other related behaviors.
Appearance fixation causes many neurotypicals to spend much of their lives wearing clothing that is at best impractical and often self-injurious or dangerous. Long-term use of cosmetics, hair dyes, and “fashionable” footwear (particularly for females on the neurotypical spectrum) can cause, respectively, skin breakouts, hair loss, and permanent injury to the feet, back, and knees, resulting in life-long pain. Underdressing in cold temperatures may lead to illness, while underdressing in summer with the goal of acquiring a “good tan” significantly increases the risk of skin cancer. Excessive time in hair and nail salons involves inhalation of potentially dangerous airborne chemicals. While no studies have as yet directly linked this exposure to any specific illness, it seems reasonable to have concerns given the dangers of inhaling many industrial chemicals. The author of this paper suggests that studies should be conducted in order to rule out the possibility that this behavior could contribute to neurological damage and autoimmune diseases.
Not all personal-appearance preferences are pathological, of course. Having “favorite colors,” and “wanting to look nice,” for example, are experienced regularly by most people. And while many neurotypicals choose to dress in uncomfortable fabrics, this may be understandable, given their frequent undersensitivity to texture. The concern, however, occurs when the neurotypical child or teen persists in attempting to wear clothing that restricts movement or blood-flow, or presents health and safety concerns, as do “high-heeled” shoes and temperature-inappropriate outfits.
Antecedents to Appearance-Fixation Disorder:
Appearance fixation disorder is extremely common among neurotypicals, although it tends to have an earlier onset age and be more severe in girls than in boys. This disparity narrows during the teenage years, when social conformity behavior among both genders is generally at its peak. In adulthood, many men, particularly those in the “white collar” workforce (notice how even the terminology refers to appearance!), develop an increasing obsession with social status, which leads to more appearance-related behaviors. Adult women (again, particularly professionals) are often under extreme social pressure to conform to complex and incomprehensible appearance-related norms set by their peers of both sexes.
It can be difficult to predict the areas of appearance-fixation that any one neurotypical will develop: one may show a primary obsession with hairstyle, another with the newness of their attire, and another with achieving a certain “look” (such as “professional,” “hipster,” “preppy,” “goth,” or “laid-back”). However, exposure to mainstream media (television, magazines, and other advertisements) seems to contribute strongly to the fixation, and parents are recommended to limit their children’s viewing of these media as much as possible during formative years. Perhaps in part because of deficits in their ability to make logical decisions, neurotypical children are particularly vulnerable to harmful messages about the role of appearance in “social status” and “fitting in,” which fall under the category of another symptom set: the neurotypical tendency towards hyper-socialization.
Symptoms and Consequences of Appearance Fixation:
Neurotypicals, particularly from the “tween” years onwards, often display signs of extreme emotional distress when seen without their chosen apparel– shame, embarrassment, fear of rejection, and lowered self esteem have been observed in many cases. Female neurotypicals are even known to refer to their chosen pattern of cosmetics as “my face,” suggesting a worryingly deep emotional attachment, even to the extent of identifying oneself solely by physical appearance. Given these factors, we can perhaps begin to understand why neurotypicals will choose “fashion” over comfort, convenience, practicality, and even safety.
Not all neurotypicals display appearance fixations to the same extreme. The financial and time burden of strong appearance preferences is usually something that a family can accomodate with minimal difficulty, although many families seek care because appearance-related behaviors can be very time-consuming and make it difficult to get children and teens ready for school on time in the mornings. Very few neurotypicals are comfortable wearing identical or even similar outfits on a daily basis, unless the outfit is specifically dictated by a current “fashion trend.” In a related concern, children whose appearance fixation includes an obsession with the “social status” of clothing can end up costing parents exorbitant sums on “brand name” merchandise and frequent requests to replace clothes before they are outgrown or worn out, due to the child’s concern that the apparel is “outdated.” It is estimated that adult neurotypicals also spend shockingly large amounts of their income on appearance-related purchases, sometimes purchasing entire outfits solely for use on a single occasion, and frequently going into debt in order to “keep up” a certain appearance. Distressingly, many appearance fixations seem to involve both a desire to replicate as closely as possible the appearance of figures from popular culture and a phobia of wearing the exact same apparel as one of their peers. Imagine the amount of time and energy this must cost them!
Treatment and Recommendations:
Very little has been studied so far in the way of treating appearance fixation disorder. Many elementary and high schools have attempted to address this problem by instituting uniform dress codes, but this seems to serve only to increase the obsession with displaying visible signs of social status. Additionally, as these uniforms are almost always chosen by neurotypical school officials, they are invariably just as uncomfortable, impractical, and temperature-inappropriate as the attire that neurotypical children select on their own. Other places that require appearance-uniformity (the military, jobs that provide a uniform, or even office dress codes) are likewise problematic, often increasing the “social conformity” behaviors that most neurotypicals suffer from.
As noted before, parents may wish to keep their neurotypical children and teens away from mass media and other sources that encourage problematic behavior, such as shopping malls and the make-up aisles at grocery and convenience stores, as these can often trigger an outburst of appearance-obsessive behavior. Impractical clothing and footwear may be reserved as an occasional reward for good behavior, but should not be used on too much of a regular basis. Footwear, in particular, is an area where parents need to be firm, as inappropriate footwear can cause damage to the developing feet (and in the case of “heels,” to the knees and lower back as well, not to mention the increased risk of serious falls, twisted ankles, or other injuries). Neurotypical children may also benefit from regular exposure to social stories and other media that explicitly outline the importance of not judging others by appearance. We remain hopeful that further treatments will be developed that can reduce the heartbreaking impacts of appearance fixation disorder.
If you are a neurotypical, or non-autistic adult, and you find yourself laughing at this piece, please take a moment to step back and imagine, with all seriousness, growing up (and living as an adult) in a world in which this paper was meant to be taken seriously. A world in which your preferences and choices (from those made casually and unconsciously to those made with serious deliberation) were subject to this kind of scrutiny. Where the majority of people discussed the “weirdness” of your tastes and moods, where articles trying to explain those things were published in serious medical journals, where your parents debated openly and publicly about whether or not to let you do many of the things you enjoy, and where entire professions (medical researchers, specialist therapists, and innumerable practitioners of alternative health care) were devoted to changing those aspects of your life and personality.
No, on second thoughts, maybe this essay isn’t so funny after all.
…Running down the hill, full tilt, holding hands, feet flying, gasping for breath, laughing for the sheer joy of it.
Autism means entire conversations held without words.
The constant and constantly changing puzzle-game of trying to understand one another, and the incredible moments of joy and excitement — the Aha! — when one person’s means of expression is grasped by the other person’s brain. It’s a brain-teaser with a truly valuable solution, a code we’re racing to break together.
(I love this about tutoring, too.)
Autism means shouting “yogurt!” from the rooftops. Because you have the right to express yourself even if no one else understands.
Autism means colors colors Colors COLORS!
And happy flapping hands.
Autism means needing a break from stimuli other people don’t even realize are there.
It means the blissfully peaceful look on your face when you come up from a dive, completely renewed by the immersion and the pressure and the magical world of water that holds you safe from sound and smell and the rest of the world.
Autism means that sometimes you need to bite down on your own hand just to get through a certain moment. And that’s ok, too.
Autism means talking in sound effects.
And deciding that we’re not going to use silverware at dinner tonight.
And lying down on the floor a lot.
And sitting the wrong way in chairs.
And hiding under the covers.
And tight bear hugs.
Autism means that something you see or hear or feel or smell or taste or think can be so fascinating that you just plain forget about everything else in the world.
Sometimes it’s like an involuntary mindfulness exercise.
Sometimes it’s frustrating and overwhelming.
Sometimes it’s tranquil.
It’s often beautiful.
Autism means paying very close attention, it really does. Just… maybe not paying attention to what you expected.
…emotions like fireworks — sudden, blindingly intense, incredibly memorable, the center of the world one moment and gone the next, leaving your ears ringing and your eyes blinking away spots…
…and sometimes it means not being able to show what you mean…
…and sometimes being able to express things more sincerely and profoundly than most people can…
…it can mean being a poet, a painter, a scientist, a person who thinks in numbers or pictures or videos or music, a person who reads at lightning speed, who remembers everything, who tastes music or hears colors, who notices the smallest details…
…Autism means being the square peg. Sometimes very obviously so. Sometimes with edges just slightly, almost imperceptibly, too wide for the slot into which everyone expects you to fit.
Autism is where you lose yourself and find yourself at the same time.
Autism means that look on your face when you watch the water sparkle…
Autism means the sounds you make when…
…fragile fascinating fascinated flying falling free focused fireworks…
Autism means you, and you are beautiful.
I just got finished reading this excellent article: http://www.assistiveware.com/are-our-assumptions-about-autism-and-aac-all-wrong
Fortunately, I’ve only once seen a case where an autistic client’s AAC was used in the horribly restrictive way that this article warns against. I have also been privileged to witness some wonderful AAC uses, and I’m in the process of learning how to encourage even more.
But let me back up a little here and tell a story.
The family cat enters the living room and my client perks up and points.
“At!” He says excitedly, “At!”
“Yes,” I say with an encouraging smile, “That’s a cat.”
“At,” he repeats.
“Cat,” I agree. A few minutes later, just in case I had forgotten, he points at the kitty again.
“At! AT! AT!” He looks extremely proud of himself, as though he has just discovered (or possibly invented) the entire idea of cats.
“You’re so smart. It IS a cat.”
“Yow,” he adds, grinning from ear to ear.
“Yes! Cats say meow!”
“Yow. Ow. At.”
“I see that.”
This client wasn’t one of my Respite kids. He was a typically developing toddler. And I suspect anyone who has ever had a toddler has had many conversations of this type. This is by way of reminding you what “normal” language development looks like. Lots of labeling. Lots of repetition. Lots of speech that, while not meaningless, seems rather purposeless.
So why on Earth, when an autistic child does this on their AAC, do people call it “stimming” and take the device away? Or worry that it is inappropriate, problematic, or inhibiting learning? And even if they don’t object, they certainly don’t engage and respond, much less encourage. And I think they should.
A client with some fine motor difficulties forms odd sentences on a device, inserting the word “iPad” at intervals, so it might read something like “iPad I want iPad park iPad swings.” Watching this, I develop a theory. I think the “iPad” button is being used as a home base, a starting point, a reference. “I know how to get to the ‘park’ button from ‘iPad,’ so I’ll make sure I start at ‘iPad’ first.” This 7-year-old had invented a strategy to help overcome difficulties with motor planning… a strategy that could easily be overlooked or considered a “mistake.” Kids are often much smarter than we give them credit for.
A pre-teen client relaxes on the couch, casually exploring her AAC program. She has a lot of pre-programmed phrases. “Hi, how are you?” “I’m fine.” “My name is Suzanne.” “Call me Suze.”
“Hi Suze!” I say. I want to acknowledge her words, even though I don’t think they are actually directed at me.
“How are you?” The device asks, and she answers it herself, verbally. “I’m good!” It looks almost like she’s having a conversation with the device… Talking to herself, as it were. Maybe she’s got an imaginary friend. Or maybe she’s practicing. I used to practice saying things in the mirror all the time. This kind of “non-meaningful” device use has never interfered with her ability to also use the device “properly” for communication. And she’s enjoying it. People learn better when they’re having fun.
“My name is Suzanne.” says the device. “Call me Suze.”
I’m making toast for an 8-year-old client while his family relaxes in the next room. This kid is very smart, but doesn’t use AAC as much as we’d like. I suspect it feels very limiting to him, as he’s a very precise person. But he finds ways to work around the problems. Sometimes they are downright ingenious.
“I want to eat toast toast toast.” says the device.
His Daddy smiles and sighs, “Don’t worry, buddy, you’ll get your toast. She’s making it for you.” Daddy thought he was just asking for toast. Again. Three minutes after the last time he asked. Daddy thought he was pestering.
“Yup! Toast coming right up!” I enthused. I thought he was just excited. I figured this was his way of saying “Yay! Toast!”
His 10-year-old brother, however, understood something that neither of us adults (both of whom are pretty close to him) even considered.
“He’s telling you he wants three pieces of toast.”
Oh. Toast toast toast. Three toasts. Of course. I’m so glad there wasn’t a therapist there to “correct” him. The repetition had a specific meaning. I wonder how often we miss the messages intended by the WAY in which our clients use AAC, messages we probably dismiss as quirks, oddities, or mistakes.
A year later. The same client has a newer AAC program, one with more flexible grammar and a much larger vocabulary. But he still doesn’t use it for much besides simple “I want” statements. And I don’t know how to encourage it, but here are a few things I’m trying:
- Using the device myself, in his presence. It’s hard, and time consuming, trying to express thoughts this way. Several times I’ve told myself I’ll only use the device and not speak for a given length of time… and invariably, I’ve failed and resorted to speech. That tells me a lot about why exploring the device during downtime is so important. You need to learn your way around so that when you actually want to say something to someone, it doesn’t take you ten minutes to locate all the words you need. I’ve said serious things and silly things and simple things. “I like music.” “I know this is hard work.” “You rock!” I’ve used it to ask him questions. He doesn’t answer often.
- Inputting the beginning of a sentence, such as “I like…” or “I feel…” and handing him the device so he can finish the statement. He’s done so once or twice. Not usually, though.
- Carrying the device around, and handing it to him when he seems to be trying to express something. What active 10-year-old is going to walk around holding something that size? Or any size? Something that fits into a pocket might work. Or having the device always set up in a specific spot so he can run over to it whenever he needs to. That can work at home and school and maybe the playground, but I realize that it’s a serious logistical issue. If you had to put in the effort of finding something or going to another room every single time you wanted to say something, how often do you think you’d bother for minor things?
He and I relax at the laundromat while his Mom goes to pick up his brother from practice. We both enjoy watching the laundry go around, hearing the regular swooshing of the machines. I find “washing machine” on his device.
“Washing machine. Washing machine.” Verbally, I add “I like watching the–” and complete my sentence on the device. “Washing machine.”
He looks up from the machine he is currently watching. I hand him the device, show him how to navigate to the “washing machine” button, under Appliances.
“Washing machine.” He says, then puts the device down.
“Washing machiiiine” I repeat verbally, drawing the word out, exaggerating. I giggle and he smiles. I pick up the device and find “dryer” next to “washing machine,” with an identical picture.
“Dryer dryer dryer.” I write. He looks at me, smiles. My own voice echoes the device. “Dryer.” I point at the dryers in the laundromat, even though I’m quite certain he already knows which is which. I hand him the device. I point to the button that says “dryer” and repeat the word verbally again.
“Washing machine dryer washing machine dryer dryer dryer” he writes.
“Cool,” I say verbally, “I like watching the washing machine too. And the dryer. But especially the washing machine.”
Doesn’t this conversation sound… familiar?