P is for Poverty

PThis is an entry for the Blogging from A to Z Challenge. The entire month of April (except for Sundays) I will be blogging through the alphabet on autism-related topics to celebrate Autism Acceptance Month.

P is for Poverty

I’ve (mostly) come to terms with my own poverty, but I worry about many of my fellow Autistic adults who are (often quite literally) starving and I worry about the children – what, if anything, will be there for them when they grow up?

Autism . . . well, disability of all types, actually . . . and poverty go hand in hand. That is not to say that every Autistic adult or every disabled adult lives in poverty. But a large percentage of us do. At a time when poverty and unemployment are declining among the general population, both are on the rise among the disabled population. The U.S. Census Bureau  reported that in 2013 the U.S. poverty rate fell to 14.5% but the poverty rate for disabled people rose to 28.8 percent. The overall unemployment rate dropped to 6% but for disabled people it was over twice as high at 12.8%. Seventy percent of the general U.S. population over the age of 16 are participating in the workforce while only 20% of the disabled population over age 16 are participating. Bear in mind that “disabled people over the age of 16″ is a category comprising some 29 million people — 9% of the total U.S. population. No one knows how many Autistic people there are in the United States, but a reasonable estimate (based on the 1-in-68 statistic) is 4.6 million, roughly 3.5 million of whom would be over the age of 18 (based on the age skew of the general population.)

For those three and a half million American Autistic adults, as well as their counterparts world-wide, the statistics are even more harsh.

Transitioning is more difficult for Autistic young adults than young adults with other disabilities. The National Longitudinal Transition Study-2 found that, when comparing adults aged 21 to 25, only 17% of Autistic young adults have lived independently, compared to 34% of young adults with intellectual disability.

In the UK, The National Autistic Society (NAS) reports that only 15% of Autistic adults are employed full-time and as many as one-third of adult Autistics have neither employment nor access to benefits. The Simons Foundation Autism Research Initiative (SFARI) reports on Norwegian studies that find “mildly affected” (SFARI appears to dislike that phrase as much as I do) Autistic people having just as much difficulty with employment as people elsewhere on the autism spectrum.

Shattuck and his team did a literature review of services for adults on the autism spectrum and found (not surprisingly) a meager amount of data available. Job support was rated highly as “evidence-based” but I was concerned about the strong emphasis on training Autistic adults to perform as costume mascots in front of retail stores. It’s a valid job, yes, and I’ve met some people who do seem to love it. But isn’t there anything else for Autistic adults? Even those with university degrees too often remain unemployed. Or work part-time and cannot support themselves on their income.

When efforts are made to help us get higher-paying jobs, so often everything seems to be centered around computer work. I’ve listened to many of my fellow Autistics complain that job assistance keeps pushing them toward computer and tech jobs despite their dyscalculia or other learning disabilities that make them unsuited for math and tech work. Moreover, many people seem not to realize that the computer industry has shifted over the course of the last twenty years or so. There was a time when computer work was a great choice for the socially disabled because there was a high need for skilled workers and few people with the skills to fill those jobs. Workers lacking in social skills were able to land secure, high-paying employment despite going down socially worse than a lead balloon in job interviews.

But that time has passed. So many people train for the computer industries these days that competition for positions is high and jobs primarily go to those who are socially competent, who interview well, who have strong people skills. Still, the mythology lingers — have no social skills? Go work with computers! It’s a damaging mythology because it can lead people to feel they don’t need to work on interview skills or office socio-political competence because their tech skills will carry the day. And career counselors still try to funnel Autistic people into the computer industry without realizing that many of us will need just as much workplace support there as in any other occupation. (And without realizing that a significant portion of employable Autistics are more suited for work that uses other skills — with words, images, music, animals, etc.)

I read a very interesting paper written by two Autistic people, Rachel Silverman and James Williams, about employment and self-sufficiency issues. One of their suggestions was to join the “autism industry”: “First, they develop a book, artwork, jewelry, photography, or other salable product.  Then they can rent space as exhibitors at autism and disability conferences for free or low cost.  They can sell their products at these conferences and earn income in this fashion.” This is an intriguing concept and one I seem to be pursuing, myself, though I haven’t been to a conference (yet?) But is there room for three million workers in the “autism industry”? I honestly don’t know. Maybe. Maybe not. Professionals rarely listen to us, but parents in increasing numbers are thirsty for our perspective. I do encourage all Autistics to make their voice heard (or seen. All communication styles included!) because a richer, fuller understanding of autism depends on a rich, full number of Autistic voices fostering that understanding in all its complexity and diversity.

Temple Grandin leans in the other direction, advising people not to become “professional autistics,” but rather to follow her footsteps of holding a “real job” and advocating for autistics on the side. If only we could all achieve her level of professional success! Beyond that complaint, I am wondering where all those “free or low cost” conference opportunities are. Every time one of my Autistic colleagues is invited to present at a disability or autism conference, they have to throw a fundraising campaign to try to get the money together to attend. Is the “autism industry” an option for talented, underemployed Autistics if the cost of attending conferences is a nearly insurmountable barrier?

Another valuable point in the paper by Silverman and Williams is that so much energy is going toward making Autistics employable and very little is going toward helping Autistics secure disability benefits. I understand the huge emotional investment in wanting to help us all get jobs and I don’t want to cut back on those efforts at all. It is very important to help Autistic people get and keep employment. But Silverman and Williams point out that we aren’t all employable. Some of us have energy levels too low to sustain full-time employment. Some have health issues severe enough to result in a large number of missed work days. Additionally, many of our health needs (for example, special diets for people with celiac, a condition that occurs more frequently in the Autistic population than the general population) are expensive enough that a living wage for a non-disabled person is not a living wage for some of us.

When the data indicates that a third of Autistic adults have no job and no disability benefits, it is clear that an unacceptable number of us are falling through the cracks . . . and those “cracks” are actually gaping chasms. I feel very strongly that there should be more assistance for Autistic adults who need disability benefits but are having a hard time with the paperwork and documentation. Additionally, homelessness makes it harder to get disability benefits. I applied for SSI (U.S. disability welfare benefits for those who have not worked enough to get the income-based SSDI (a federal insurance program for disability)) several times before I finally got it — not because I was being turned down, but because I was too homeless and struggling to keep up with the application process. I’d get an address, apply, lose the address and be too busy trying to keep myself fed and safe to even think about how to follow up on the application and so it would lapse. When I finally got enough stability to follow through on the process, I was awarded SSI in less than 2 months from initial application — apparently, my case was what one might call a “shoo in.” But when I couldn’t keep a mailing address for two months, even a case as straightforward as mine was stymied.

Helping Autistic adults to get disability benefits isn’t glamorous. It is hard to feel like one is doing good work when the focus has always been so strongly directed toward getting disabled people into the workforce. I think there should still be a strong focus on supporting Autistic people in employment goals. But it’s clear that it’s time to admit that some Autistics — even some highly educated Autistics — are not going to be able to work. We need more legitimate work-at-home opportunities, more support and assistance in finding and keeping online employment, a more individualized approach to vocational assistance, and a lot of help in getting disability benefits for those who aren’t able to work full-time or at all.

I spent a lot of time living in the streets and eating at soup kitchens and from dumpsters before I was able to get on SSI. I want people to understand how easy it is for Autistic adults to end up homeless. I’ve also had plenty of Autistic friends who were living in sub-standard conditions — for example, without running water or heat. I’ve been in that position myself, too. Our poverty levels are more than twice those of the general population and we are a very vulnerable population, comprised of many people who do not know how to ask for help with homework or cooking, let alone help with income, housing, healthcare, and survival. There needs to be more autism-accepting, non-judgmental assistance we can turn to. There need to be people trained in helping us get and keep employment and helping us get disability benefits. Too many of us are homeless, hungry, and without adequate medical care (both due to the barriers described earlier under “H is for Healthcare Access” and due to the economic barriers that still exist, even after the passage of the Affordable Care Act in the United States and the existence of universal healthcare in other places such as the UK and Canada.)

Yes, some of us are doing very well. But we aren’t all Silicon Valley workers. We aren’t all Temple Grandin or John Elder Robison. And many of us are living with aging parents who don’t have the resources to set their adult children up for life after they are gone. We need help and we need it now. So many articles talk about children aging out of the system and having nothing to turn to, as if it is a new crisis. The crisis is not new. We have always been here. Watch the film Wretches and Jabberers to see one example of an intelligent and powerful Autistic man who personally lobbies with politicians, yet is homeless. There are Autistics of all ages — and I mean all, including people in their 70s and 80s — who have been living in crushing poverty for decades. It has been a silent crisis for too long. We need help now.


O is for Overloaded, Overstimulated, and Overwhelmed

OThis is an entry for the Blogging from A to Z Challenge. The entire month of April (except for Sundays) I will be blogging through the alphabet on autism-related topics to celebrate Autism Acceptance Month.

O is for Overloaded, Overstimulated, and Overwhelmed

I couldn’t write this essay until now because, for the last several days, I have been too much of these three things to be able to write about them.

There are several types of experiences that tend to make Autistic folks overloaded, overstimulated, or overwhelmed. As with most things, it’s different from person to person. Some people might respond to one of these triggers; others respond to all of them. Some might seem pretty solid most of the time, others might be always living so close to the anxious edge that it does not take very much at all to push them over. Many of us are both of these extremes, at different times and in different situations.

That’s an important thing to remember: when you’re talking about things like “severity” or “functioning levels”, it’s better to just step back and not use that framework at all and instead talk in terms of support needs. We all have support needs and the amount and type of support we need can change from day to day, throughout the day, from minute to minute, from year to year. We are dynamic, not static, and how much support we need, how overloaded we become, how we react to the stresses of life — these things are constantly changing. Over time, we develop coping abilities, develop new skills, grow up, gain perspective. In the moment, we find or put ourselves into environments with more or less stimulation, have unexpected encounters with other people, weather, animals, the sharp corners of furniture. Life is always changing and we are always changing along with it.

I don’t always know how much input I can handle. Think about that for a minute. I’m almost 50 years old. I’ve had decades of life in this body and brain. I’ve carefully studied life and my responses to it. And I still am not always sure whether I can handle something or not. Sometimes, a thing I could handle yesterday is out of my grasp today. Sometimes, a place that is usually good for me is very hard to cope with. Sometimes I’m not even sure what is stressing me out. Sometimes I’m not very good at realizing I’m stressed out and need to take a break. If I, a middle-aged adult, do not always know when I need to take a break, how much more must you be compassionate with a child who has not learned self-regulation skills yet?

So, the main triggers I have noticed in myself and others (which is to say these are not necessarily the only triggers of overload and I would welcome discussion of other sources of overload in the comments section) are sensory input, emotions (our own and others’), and demands exceeding our executive function abilities.

Sensory input was the one that most recently did me in. I am on a limited data plan when it comes to the internet and my writing process involves being online (pulling up links to include, looking up data to get facts correct, even popping back and forth between writing and other activities on days when I need to break what I’m doing into pieces.) My data plan re-sets mid month and I was low on data so I decided to go out to wifi spots to write.

Normally, I have little trouble working in public. I have a few favorite wifi spots, including a nice, quiet little independently-owned coffee shop. What I had forgotten was that it was Friday night. I keep a non-traditional schedule, so “weekend” doesn’t have a lot of personal meaning. I work every day, except when I need to rest. I don’t use a calendar to tell me when to work or rest because it is healthier for me to listen to my body’s cues. Except when I am so intent on doing something that I over-ride my body’s cues, not noticing how much it is screaming for something until it is screaming so loudly I am breaking apart. That’s what happened on Friday.

I started out in the coffee house and things were going fine until a large group of loud and high-pitched shrieking people sat right next to me. I put on headphones and started streaming Vivaldi, but the loud shrieks cut through everything and they HURT. Also, I have a condition called vestibular hyperacusis which can best be described as a sort of synaesthesia that translates sound into motion. The more common form of hyperacusis, cochlear hyperacusis, translates certain sounds into pain. Vestibular hyperacusis is pain plus dizziness, disorientation, nausea, etc. When I hear certain high-pitched sounds, it feels as if the floor is sliding away from under me. It’s like being sea sick. And it’s pretty horrible.

Then some musicians decided to play. Normally, that’s a good thing. Here’s an example of what I usually hear when musicians start picking up instruments at “my” coffee house:

I like that. It is imperfect, impromptu, and amateur but utterly delightful. This is not what was happening on Friday, though. Four people picked up instruments and started playing four different songs, each getting louder and louder, trying to out-play the other three. It was a horrible cacophony. I turned up the volume on Vivaldi but still couldn’t quite drown the noise out.

But I was stubbornly trying to finish writing an essay and I tried to “power through it.” This is a bad idea. And I know, partly, where it comes from. All my life, I’ve had people say, “it’s not that bad”, “just tough it out and you will get used to it,” “stop acting like such a baby!” I’ve internalized a lot of the shame and so when I should have just packed things up and gone home, I tried to power through it instead. I stayed until the coffee house closed and I got a lot of work done, despite the pain.

But I wasn’t finished. I should have just gone home, but instead I went to a 24-hour McDonald’s (still unaware that it was Friday night) to try to finish. A busload of pre-teens came in, hyper from some activity, and started playing Ping-Pong across the restaurant. Again, the noise was horrible and now I had balls whizzing past me, inches from my face. I stubbornly kept writing and finished my work and went home.

And slept for days. I slept all of Saturday and most of Sunday. Monday afternoon, I woke up long enough to re-schedule an appointment to Tuesday. Tuesday I made the appointment but spent the rest of the day before and after sleeping. Today, Wednesday, I slept twelve hours and I finally feel “right” enough to accomplish things again. Like writing this essay. Spending Friday evening fighting against excessive and overloading sensory input cost me about four days of . . . . of life, really. This is why “just tough it out” is such a bad idea. If I had listened to my body and listened to the advice I am always giving to other people, I would have gone home (or noticed it was Friday and .not gone out in the first place.) I stubbornly wanted to get some work done but by trying to force my way through it, I lost several days of productivity.

The root of the problem was that I was not treating myself the way I ask people to treat the Autistics in their lives. I should have removed myself from the stress, but I didn’t. Pay attention to sensory input and how it might be stressing out the Autistic people in your life (including yourself.)  The grocery store is a really common place for meltdowns and it’s easy to see why: flickering fluorescent lights, bright colors shouting in chaotic ways, words everywhere you look, (other) children crying, people milling around (motion is one of my sensory sensitivities and it makes it hard to be in a crowded place because not only are there sounds and smells and touches but everything around me is moving in unpredictable ways!), painful and garbled announcements on overhead speakers, and in the warehouse groceries there is echoing sound and the shrill beeping of forklifts backing up. Is it any surprise that the grocery store is one of the biggest challenges for Autistic people as well as for the mothers of young Autistics? It’s a place we usually have to go if we want to eat but can be a sensory nightmare to be there.

Emotions are overloading and overwhelming. I laughed at my great-grandmother’s funeral and it (understandably) made people in my family very upset. But I loved Grandma Mary deeply. She was my favorite family member. She was the one who always accepted me, even when no one else could. She taught me what unconditional love looks like. I’m feeling very emotional right now, just remembering her and feeling the loss. Just about every day of my life, I wish she were still alive. But I laughed at her funeral because I was so emotionally overloaded and overwhelmed.

My cousin did her best to rescue me. She grabbed my hand and dragged me away saying, “excuse us, she’s really choked up!” to try to cover the giggles I was struggling to suppress. She pulled me after her into the bathroom and let me laugh in private. Laughter is contagious, so pretty soon she was laughing along with me, even though I know she deeply loved Grandma Mary, too. I am so grateful to my cousin for pulling me out of that situation — I rarely get such beautiful and compassionate support. And I am consoled by the knowledge that Grandma Mary would have loved and accepted me, even seeing me laugh at her funeral. She was always on my side and she knew I loved her. I wish I hadn’t pissed my family off so much. But I guess by that point they were used to seeing just about anything from me and just added it to the tally of strangeness.

Another emotionally overwhelming situation was when I tried to get lunch in the food court at my university during finals week. I had an exam coming up in 90 minutes and figured I ought to put food in me first. So I already had a huge stress overload as anyone who has ever survived a finals week would know. I went to a food vendor and asked for “Fire and Rice”, a favorite meal. I mentioned that I wanted the sriracha added during cooking, not after, because it tasted better that way. The cook said okay. Still, I watched him with an eagle eye because I had lots of experience with my food not being prepared the way I asked. He did not add sriracha. He quickly scooped everything into a bowl and I said, “you didn’t add sriracha.” He said, “I can put some in now if you want.” I said, “it’s better when it’s added during cooking.” He said, “I did add it. You weren’t watching.”

I was confronted with a dilemma. I was sure he hadn’t added it because I was carefully watching for him to. But what if he did add it and I asked him to put more and then the food was overseasoned and unpleasant to eat? Was he lying to me? I hate being lied to! Was he playing me for a fool? Had he really done something while I was watching for him to do it and I didn’t see?

I didn’t know what to do and I lost control. I figure the people seeing me melt down figured I was some kind of spoiled brat. Or maybe they were used to seeing this kind of behavior during finals week? I started to leave and a woman approached me timidly, as if she were frightened of me, trying to calm me down and get my needs met. I ended up running away to a hiding place in the bathroom where I sobbed and hit myself for an hour until I was calm enough to go take my exam.

It’s a small thing. Someone made my food wrong and possibly lied to me about it. But it was too much emotion on top of the high level of emotion I was already walking around with. (Everyone around me was stressed and emotional because of finals week and I am like a sponge, soaking in other people’s emotions as well. One thing I love about my boyfriend is how calm he remains in the face of just about anything. I tease him about it sometimes, but in truth I love it because it is so much easier for me to remain calm when the people around me are calm.)

Some ways to try to mitigate emotional overload include staying calm, even during a meltdown (I know, it’s not easy. But the less you react emotionally to an Autistic person’s emotional distress, the easier it will be for them to recover from emotional overstimulation), and helping the Autistic children in your life to learn to identify and name their own emotions. I find that the more I am able to recognize my emotional states (and it’s still not easy for me) the better I am at calming myself and, if needed and possible, removing myself from emotionally stressful situations. It’s a work in progress. I will probably be working on self-regulation skills for the rest of my life.

Executive function overload is also pretty common. One thing I’ve noticed that sets other people off but I seem to handle reasonably well (although I do it much more slowly than I observe non-Autistic people doing it) is filling out forms. I have watched people completely disintegrate over a job application or a medical form. It’s a strange thing, but I do understand and relate to it — someone who knows what should be put in the form boxes and who can read and write just falls apart at putting all that together. There’s a . . . stuckness. It’s part of why I am slow at filling out forms (dysgraphia – difficulty with handwriting – is the other part of why forms are extra tedious for me.) If someone you know has a hard time with forms, don’t shame them. Don’t tell them to suck it up because they have to learn some day. Help them! Help them with the form and, if you can, along the way talk about what you are doing to help them learn form-management skills.

Another overwhelming, executive-function related experience is housework and self-care. Every day, we are supposed to shower, brush our teeth, style our hair, clean our homes. It is overwhelming because there are so many tasks with so many steps. And if they go undone, there are even more tasks; it piles up. The worse it gets, the harder it is to start doing something about it. I keep checklists, broken down into the smallest bites, and it helps. But the moment things get away from me, the checklists don’t work any more. When things get too chaotic, you can’t fix thing A because thing B is in the way but you can’t fix thing B because thing A is in the way. Result: overwhelm, overload, breakdown.

Where it can get confusing is that the reactions to overload can be so different. Crying, meltdown, anger, self-injury, shutdown, long sleeps, overeating, undereating. Almost any kind of stress reaction you can imagine and some that never occurred to you. What makes it harder? The biggest challenge for me is when people blame me or mock me for struggling to cope. I’ve been told, “you just want to be upset.” No. No, I don’t. I don’t want to be upset at all. Being upset is horrible and stressful and exhausting. Being upset is what happens when a limit gets reached and I can’t pull back from the edge any more. Just like a person who needs to vomit and is stuck in public has no choice but to vomit in front of everyone, an Autistic who has reached overload and is stuck in public has no choice but to stress out in front of everyone.

It’s embarrassing. Humiliating. Traumatic. I never went back to that food court the rest of the time I was a student at that university. I couldn’t bear to revisit the scene of my trauma, the place of my shame. The loss of control is frightening. The loss of dignity is appalling. When a person pushes me to overload, especially when they over-ride my protests to do so, I experience a massive loss of trust and disassociate myself from that person. When someone tells you that they can’t handle something, your instinct may be to be a cheerleader and push them into it. “Of course you can! I’ll be right by your side the whole time!” “Don’t limit yourself with can’t!” “The only disability is a bad attitude!” There are all kinds of cheery platitudes meant to push people past their comfort zone. Sometimes that comfort zone is there for a very real reason and it’s important to respect that. Don’t lead with “of course you can!” Lead with, “can you tell me what makes it hard for you?”

Psychologists often get it all wrong. They try to apply psychology to episodes of overwhelm and meltdowns when what is primarily occurring is neurology. Yes, a psychological component can develop — going through multiple stressful breakdowns will leave a psychological mark on a person — but overload, overstimulation, overwhelm, meltdown, shutdown are manifestations of neurology, of having a nervous system that is wired differently and has a pattern of over-sensitivities and under-sensitivities that diverge from the expected. In saying this, I don’t intend to present a neurology/psychology schism because it’s all connected. I have more to say about this later, under a different letter of the alphabet that is yet to come.

Psychologists are trained to be alarmed by “self-isolation.” They often see a patient who presents with symptoms of depression (whether actual or mis-read. Sometimes our normal ways of being look like depression when they are not. Sometimes our depression does not look like depression. We talked about this before, earlier in the alphabet.) and they believe that the depression is caused by the self-isolation so they urge the person to get out more, “put yourself out there,” be more socially active. The problem with this is that some of us have chosen self-isolation because we are trying to avoid overload, overstimulation, and overwhelm. I love people. I think I may actually be a hidden extravert — hidden by my tendency toward sensory overload. I can’t “put myself out there” more than I do. Paradoxically, when I try to follow that sort of advice from a therapist, I become more depressed as a result.

It is okay to help us find our limits if we don’t know what they are. It is okay to help us grow past our limits in manageable bites that leave us in sufficient control. But it is imperative to respect our limits when we communicate them to you. We live in these bodies and we learn, over time, how much they can handle. If the amount we can cope with is less than you think is normal or acceptable, it is not your job to try to force us “out of our shells.” We aren’t in shells. We are practicing self-care. Respect that. Do not force us and do not shame us for having different limits than others. This is a very basic aspect of autism acceptance — accept our limits and follow our lead in moving past them. We live in a culture that teaches “no limits” but there really are limits. If you would not expect a person born into a biologically male body to become impregnated and carry a child in their non-existent womb, if you would not expect a human body to sprout wings and fly away, then you understand that there really are limits. Don’t ridicule or pressure others whose limits are not what you think they should be.

Help us to grow in ways that don’t cause us to fling ourselves to the floor or fall limply passive or scream and hurt ourselves. Help us to grow in ways that are not stressful and damaging. Research has shown that repeated stressful stimulation changes the brain in damaging ways. Do not damage us. Help us to find the ways to stay calm and focused. Help us to test our limits gently and with self-compassion. Respect us and do not seek to overload us — it is not the way to help us grow. “Get over it,” should never be your motto for us. Please, help us learn to protect ourselves and respect our “no.” Slow down. Listen to us. It may be horrible for you to have to be around us when we are overloaded, overstimulated, and overwhelmed, but I assure you it is infinitely more horrible for us to experience overload, overstimulation and overwhelm. Don’t be angry. Don’t blame us. Have compassion for our struggles and respect for everything we do to help ourselves.





N is for No Means No

NThis is an entry for the Blogging from A to Z Challenge. The entire month of April (except for Sundays) I will be blogging through the alphabet on autism-related topics to celebrate Autism Acceptance Month.

N is for No Means No

As adults we talk about things like rape prevention and use the slogan “No Means No.” That is to say, respecting someone else’s “no,” at any time, for any reason, is the rational, adult, ethical thing to do. There are a lot of strong and powerful words being put out about respecting other people’s boundaries and autonomy.

A strange thing about “no means no” is that it only applies to adults. The more vulnerable members of our society — children — are rarely allowed to own their “no.” And then somehow we expect them to morph overnight from people who have spent nearly two decades having their boundaries violated by people more powerful than them (adults) to people who are eager to respect other people’s boundaries, even the boundaries of those who are weaker than them (often women, thus the rape prevention connection of this slogan.)

And, for the moment here, I am not talking about just Autistic children. This is something we do to all children, regardless of neurology. Now, you’re probably saying that sometimes children need to have their boundaries violated and I will not argue that with you. For example, we have to teach children that there are big, fast-moving, deadly cars to pay attention to and not run in front of. This is a perennial facet of parenting — in other generations there were Roman soldiers to not piss off or hungry saber-toothed tigers and dire wolves to not look like lunch in front of.

Another example is life-saving/changing medical treatment. Kids don’t want surgery or chemotherapy or orthodontic braces but parents who choose their child’s health over their boundaries are making a loving choice. Hopefully, there is lots of talking about outcomes and the boundaries are violated in as gentle and informative a way as possible. There are some boundaries in childhood that are pretty much inevitably going to get dismissed for a particular life-and-death sort of purpose and that’s okay. Difficult for everyone involved, but okay. I am very happy that my parents pushed me into getting my teeth aligned by discussing the results with me and offering encouragement and support to continue when the procedures were more painful.

But there are thousands of minor boundary transgressions made against children all the time. For example, my father — who, I should mention, loves me dearly and was a wonderful daddy — used to answer my request for a chocolate bar by saying, “you don’t want a chocolate bar.” Not “I am not going to buy you a chocolate bar,” or “I don’t have the money for a chocolate bar,” or “I want to see you eat something healthier, so I’m not getting you a chocolate bar,” or “chocolate is for birthdays, Christmas, and Easter, so you’ll just have to wait for the next holiday.” No, he told me I didn’t want a chocolate bar. This was very confusing to me — I had thought I wanted a chocolate bar. I still felt very much like I wanted a chocolate bar, despite being told I didn’t. Were my wants true? It was baffling to me and a minor boundary transgression (telling me I didn’t feel the way it was obvious that I did feel) that subtly chipped away at my sense of self and autonomy.

I’m a very concrete thinker. It never occurred to me that “you don’t want that” was just an expression of speech for my father. It was something far less subtle to me. Wanting a chocolate bar and not getting it was bad enough. Being told that I didn’t even know myself well enough to understand what I wanted was diminishing in ways I’m only now beginning to understand, decades later. Small statements have big consequences, especially when you stack a mountain of thousands of small statements day after day.

But even these sorts of boundary transgressions are minor compared to the level of compliance that is so often expected from Autistic children. Too often, in the name of therapy or early intervention, Autistic children are subject to a systematic demolishing of their sense of autonomy and their right to say “no” and be heard. Autistic children are treated in ways that most people would be horrified were non-autistic children treated the same way.

“Touch your nose.” “Touch your nose” “Touch your nose.” The therapist takes the child’s hand and forces it to the child’s nose while saying once again, “touch your nose.” Then, “good girl! Here’s a gummy bear!” A pause, then, “touch your nose.” “Touch your nose. ” “Touch your nose.”

It is a technique I have seen used to train bears to do tricks. It is a method used to train dogs and horses to perform on command. It is a common behavioral modification program for Autistic children.

A bear demonstrates the “touch nose, get a gummy bear” technique.

Now, there’s nothing inherently wrong with asking someone to touch their nose. I am ten years older than my sister and when she was a little toddler, one of our favorite games was for me (or Mom) to say, “where are your ears?” She would grin and touch them. “Where is your nose?” Again, a smile and a touch. We’d go through all the objects — her toes, her teddy bear, the blue ball, the red ball. She didn’t need gummy bears because she loved the game and the attention. She was eager to show off that she knew all these things. But even if she needed an incentive to show us things, that’s still not horrible. There’s nothing inherently wrong with giving someone candy or stickers for showing that they know the letter S or where their nose is.

Where the touch nose sort of training goes horribly wrong is when we forget that No Means No. Autistic children don’t have as many resources for saying no, so they say it in ways that get labelled as “non-compliance.” They turn their head away. They get up from the table and walk away (or try to!) They cry. They scream. They hit. They bite.

And then they get labelled: violent and non-compliant.

But what were those children supposed to do? No means no, right? For everybody, right? Or maybe only for non-autistic adults? Children don’t get to say no? Children who can’t shape the sounds of “no” with their mouths don’t get to say no?

There are people who say that “touch your nose and get a gummy bear” is very important. There are people who say that a child must go through hundreds of repetitions of touching their nose or they will never have a chance in life. There are people who say a child must spend 40 hours a week sitting at that table, touching their nose over and over. And there are people who say that the cries and hitting are just “manipulation” and should be ignored. The protests have to be worked through and the nose has to be touched. And touched. And touched.

How is it manipulation to try to assert one’s self? How is using any method available to say “no” a manipulation? How can I hear people saying these things and not think of “no means no” and how grossly it’s being violated?

Sexual abuse is high among those of us with intellectual or developmental disabilities. The Arc reports several studies that found frighteningly high rates of sexual abuse against children and adults with intellectual disabilities, ranging from 1/4 to 1/2 of disabled people being the target of serious abuse. A study published in the journal Child Abuse and Neglect found that nearly 1/5 of Autistic children had been abused sexually or physically. This is not a population that should be taught that their no doesn’t mean no. This is a population that needs to be taught to own their no, defend their boundaries.

Look at it this way: is it better to push and push a child, while ignoring their boundaries and attempts to say no, so that they can perform a task on command but are primed for victimization? Or is it better to work within the child’s own learning time table, working to help them develop without forcing them or ignoring their clear statements that their limits have been reached, ending up with someone who accomplishes things at a later age than others and has a strong sense of self, refusing to allow others to violate their boundaries?

I see a lot of parents struggling hard to get their child “indistinguishable from his peers” or “school ready” at the “right” age.  It is worthy to want to help your child. It is important to work to help your child achieve her full potential. But it is crucial to teach your child to say no and be heard. It is vital to respect your child’s autonomy and not sacrifice their safety for your learning goals.

Children develop. Even children with developmental disabilities develop — just on our own schedules.  A study of children who were not speaking by age 4 found that over half of them spoke fluently as adults. When you add in the adults who were not speaking fluently but could communicate well using short phrases, the number of non-speaking children who grew up to be speaking adults went up to 70%.

“But that won’t be my child!” I’ve heard parents retort. “The definition of autism has been broadened too far. Those children are high-functioning. They aren’t like my child! My child has REAL autism! My child has Kanner’s autism, not Asperger’s!”

The first person ever diagnosed with autism by Dr. Kanner drives a car and plays golf today.

Oh, he’s still Autistic. Read the linked article and you’ll see that he’s very Autistic. But he lives in a community with lots of support and accommodations. And love. Donald Triplett is very loved and respected in his community.

Forget “indistinguishable from peers” and focus on building a world of Triplett-friendly communities. Stop interpreting outbursts as “emotional manipulation” and start looking for the root causes. And teach your children — all your children — what boundaries are and how to say “no” and make it stick.

No means no. That is a basic truth of a respectful society. Do not teach your child that they are outsiders to that social contract. Thoreau taught it, Martin Luther King Jr. taught it, and you can teach it: when demands for compliance become unreasonable, it is a fundamental human right to say “no.”



M is for Murder

MThis is an entry for the Blogging from A to Z Challenge. The entire month of April (except for Sundays) I will be blogging through the alphabet on autism-related topics to celebrate Autism Acceptance Month.

M is for Murder

I have been dreading M. I don’t want to write this. I have to write this. This is one of the most important letters in the autism acceptance alphabet because this is the very worst outcome of autism awareness without autism acceptance. This is the grim truth about what happens when we are portrayed as pointless burdens who crumble marriages, bankrupt families, and destroy the lives of everyone around us.

When parents learn about their child’s diagnosis of autism and turn to others for help, they need hope and they need realism. They need to hear from people who have been living the life they are just beginning to realize they are also living and they need to hear from those voices that, yes, it is hard. But all parenting is hard. They need to hear that all parenting also has joy and satisfaction and they need to hear that they will find that joy and satisfaction, too. They need to find a community that is supportive when parents need to vent about how difficult it is but also a community that does not condone hate speech toward innocent children.

Sadly, what too many parents find is a community filled with gloom and doom and endless complaint. They too often find themselves in a community of people who portray themselves as martyrs and victims and their beautiful children as abusers and punishments.

Some parents manage to rise above the negativity. In What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism, Ariane writes, “Disregard any organization that describes autism and your child as tragic, an epidemic, a burden or any other word generally reserved for warfare.  If you read or hear something that causes you to feel fear, walk away, it is most likely inaccurate and intended to make you afraid.  None of us are able to help our children when we are terrified.  Fear can cause us to make decisions we will later regret.”

This is the voice of experience. Ariane is a strong ally to her Autistic daughter, Emma, and to the entire Autistic community, but she has written about the regrets she has over past beliefs that came from a place of fear. Emma’s family was living in fear because their first exposure to autism consisted of doctors, organizations, and a community of parents who were also filled with fear instead of acceptance. Emma’s parents, Ariane and Richard, were afraid, but they also saw so much in their daughter and when they finally met Autistic adults, they were eager to learn from us.

Emma’s family are not the sort of people to get mired in feelings of victimhood. I know a little bit of the family’s history and I have a huge amount of respect for everyone in the family — they have all been through so much, long before Emma was born, and they are strong survivors. They are the kind of people who find their way out of shadows of fear. Too many other people get stuck in those shadows and the children suffer as a result.

Sometimes parents (or other guardians) are s frightened and stuck that  they kill their children. The parents are so filled with despair and grief that they decide it would be better if their child were dead. Sometimes those parents also try to commit suicide along with their child. Some succeed, but most times, those suicide attempts are half-hearted and unsuccessful, mere gestures. Sometimes the parents don’t intentionally murder their children. Sometimes they kill them accidentally through the application of brutal “treatments” such as chelation or bleach enemas. I’m hoping you’re asking yourself right now how any parent could give their child a bleach enema. The answer? Fear. Love is stronger than fear, but fear can hide love too well for the power to take effect.

The reason I am writing about autism acceptance — the reason our whole community is making such a lot of noise about acceptance — is because awareness without acceptance is deadly. Literally deadly. Awareness without acceptance is fear. Fear of autism hurts Autistics. A culture of fear leads to murder. We haven’t got complete records of how many Autistics get killed by their parents of caretakers, but the 2015 Day of Mourning vigil website says that over 70 people with disabilities have been murdered by their parents or caretakers in the last 5 years. That’s more than one per month.

The first murdered Autistic I became aware of was Marcus Fiesel, killed at age 4 in 2006. Marcus loved flowers and Bob the Builder. Everyone who knew him said he was a sweet and lovable boy. His mother was having a hard time keeping the household together, so Marcus was in foster care. His foster parents wanted to go out of town so they put tape on Marcus’s mouth and wrists and rolled him up in a carpet and locked him in a closet while they left town for the weekend. Marcus died from overheating and suffocation.

As devastating and depressing as it was to read about the murder of Marcus Fiesel, in the decade since then, I have watched person after person murdered. It is easy for me to believe that the killings happen more often than once a month because I see the news stories every month, sometimes two in a month. There are a few isolated killings that get a strong public reaction of outrage toward the killer — the most recent was when London McCabe’s mother threw him off a bridge to drown. But more often, the reaction I see in the comments under news stories are horrifying to me.

People defend the killers. They say that it is “understandable” that they “snapped” because we are such “burdens.” The ableism is thick and I have learned to avert my eyes from the comment sections under these news stories because it is so angering and distressing to see so many people justifying the murder of people like me.

Emily Willingham wrote, “It’s become typical, again and again, for parents who murder their autistic children to get some kind of a “pass” from the commentariat and the news media because, well, autism is such a challenge” That’s in part because some autism organizations and members of the news media have successfully presented autism as a “monster” and a “kidnapper” instead of as the developmental condition that it is. So in the public mind, an allegedly overwhelmed mother with “ no supports” should certainly be pitied and not judged harshly for killing the “monster.”” – from If a Parent Murders an Autistic Child, Who Is to Blame?

Shannon Des Rocha Rosa wrote, “Our autistic children’s lives are no less valuable than other children’s lives. But they are often harder, especially when parents focus on normalizing or curing autism, rather than supporting and understanding children who depend on them. […] We need to, must do better by our autistic children. We must do our best to support and understand them and their autism, and stop torturing them by trying to turn them into the non-autistic child they will never be. Specifically, if you cannot accept your child’s autism for their sake, then please — do it so your role as a parent will be easier. If that’s what it takes to stop someone from killing their autistic child, so be it.” – from We Cannot Excuse Parents Who Kill Autistic Children

Michelle Sutton wrote, “The reason people feel sorry for me when they find out my kids are autistic is that they don’t know anything about autism except that it makes them hard to live with. They know this because the media tells them.

“And this is what I’m talking about when I say “autism awareness” doesn’t help autistic people, and that the media has no place blaming autistic children for their own murders.

“So instead of listening to the facts being spoken by autistic people and their allies, people listen to the media tell them that autistic people are violent and difficult to live with. So society moves down the slippery slope of assumption until it reaches the point where vilifying children based on a diagnosis is acceptable.” – from Autism, Stigma and Murder

And this is why we need autism acceptance. Autism awareness kills. Autism awareness stigmatizes. Autism awareness blames Autistic people for the crimes others commit against us.

Autism acceptance welcomes us to be part of the big human family: respected, valued, protected.

We need to build a world where parents learning about their child’s diagnosis are welcomed into a community of love and support, not of fear. We need to build a world where a huge organization cannot vacuum up all the available donation money by telling us that Autistic children are “like lepers” and their parents are “like Saint Francis of Assisi.” We need to build a world where it is unthinkable for people to side with a murderer and blame their victim for being such a “horrible burden” that killing them was “understandable.”

We need to build a world of autism acceptance.

L is for Love

LThis is an entry for the Blogging from A to Z Challenge. The entire month of April (except for Sundays) I will be blogging through the alphabet on autism-related topics to celebrate Autism Acceptance Month.

L is for Love

Love. Those who say we have no empathy claim we are not capable of it. But we already established back at letter E that Autistic empathy doesn’t always look just like non-autistic empathy so who can marvel when I suggest that Autistic love has its own flavor as well?

If you doubt that we can love, know that the only thing that has sustained me sufficiently to write thousands of words exploring autism acceptance this month is love. We are half-way through the month and I am still seeing a high number of advertisements for Autism Speaks, complete with the tragedy language. Imagine that: a whole month each year is set aside to make everyone aware of what a burden you are, how much better the world will be when there are no longer people like you in it. What could sustain me through a month of that? Love. I am writing because I love Autistic people and because I want to do what I can to increase acceptance. Yes, I promise you we can love. There are many days when love is the only thing that sustains me.

Beth Ryan writes of her Autistic daughter, “She lavishes love and affection those close to her. She loves.  She loves.  She loves. Don’t tell me she doesn’t love. She LOVES. Think Autistic people are incapable of loving?  That says more about you than it does about the people you’re mis-characterizing.” – from ability to love: presume competence

But that is not my favorite quote from Beth about love. She makes it abundantly clear that it is selfish to demand that Autistic people express love in ways identical to the ways non-autistic people express love when she writes, “I often hear things like, “It is so sad that Autistic children can’t tell their parents that they love them.” Actually, more often I hear parents say, “I want my child to be able to tell me that he loves me.” When I think about Evie’s communication, that’s just about the furthest thing from my mind. I want to hear that her tummy hurts. I want to hear that she wants a glass of water. I want to hear that she is hungry. I want to hear the things that make her happy, scared, sad, angry, frustrated, tired. I mean “hear” figuratively, not literally. I do not care if she speaks or points to a picture or clicks an icon on her ipad or types. I want communication for Evie. I want to stop guessing at what she needs and thinks so that I can answer her needs.” – from the words i want to hear

Let that sink in for a moment. Could it be that the people who say that we Autistics don’t know how to love . . . could it be that they are the ones who need more lessons in loving? Beth gets it. Beth sees that her daughter loves and Beth sees that being there when her child needs her is more loving than wringing her hands because she has to see her daughter’s love, as it is lived out in each moment of her life, instead of getting those three words from her child? And this is what autism acceptance looks like: it looks like Beth, seeing her daughter’s love and caring more about meeting her daughter’s needs than about getting verbal confirmation of what she already knows to the core of her being: that her daughter is filled with love.

Because we are. We are filed with love. See how K says it, “The way I love? It is deep. Autism is deep love. People write it off as special interest or obsession, but even if it’s not something I can excel at, I can excel at loving what I love, loving what I do, loving who I love. Autism is being able to be consumed by love and interest, it is giving 100% because it is an insult to the thing one loves to give any less. Autism is going big or going home.” – from What autism really is

I wish I could say that anyone who is loved by an Autistic person deeply knows that they are loved, but sadly I still see that some people are unsure of the love, even in the middle of receiving it. I’ve even watched video footage of more than one mother saying they just don’t know if their child is even aware of them or knows who they are . . . while their child is clearly showing love toward their mother, even in the middle of her doubts. It is a sad thing to see.

Do not doubt it. We do love!

Researchers doubt it. And they come up with strange theories about why we don’t love. For example, some researchers depleted the oxytocin and serotonin in mice (in MICE!) and saw that they didn’t want to socialize any more, so they said that we don’t get neurochemical rewards from interacting with others. Because some mice didn’t like having the oxytocin and serotonin depleted in their brains. Seriously? Seriously??

““People with autism-spectrum disorders may not experience the normal reward the rest of us all get from being with our friends,” the study’s lead author, Dr. Robert Malenka, professor of psychiatry and behavioral sciences at Stanford University said in a statement, “For them, social interactions can be downright painful.”” – from What the ‘Love Hormone’ Has to Do With Autism

Yes, social interactions can be painful. But it has nothing to do with mice. And I’m pretty sure it has nothing to do with oxytocin. People smell funny. They are loud. They move quickly in unpredictable ways that raise my anxiety levels. They randomly touch me, often for no clear reason, and almost always without asking first. They make fun of me. They get angry. They say, “what the hell is wrong with you?” They say, “aw poor widdle baby is crying again!” And not in a comforting way; they laugh at me as they say it. They want to socialize in places with loud espresso machines. Or glaring fluorescent lights. They want to go to the mall and they laugh if they’re told the mall is scary.

But scientists don’t know any of this. They think they can learn more about how and whether we love by altering mice than by interacting with us. Who was it that finds interactions painful? Put down the mice and talk to us! We do love. And even those of us who don’t use our voices, even those of us who don’t use words at all, can tell you more about love than your hormonally-challenged mice will.


K is for Kids (But Probably Not the Ones You Thought)

KThis is an entry for the Blogging from A to Z Challenge. The entire month of April (except for Sundays) I will be blogging through the alphabet on autism-related topics to celebrate Autism Acceptance Month.

K is for Kids (But Probably Not the Ones You Thought)

No, I don’t mean all those Autistic kids. I mean Autistic people becoming parents – having kids of their own. Sometimes Autistics have Autistic kids, sometimes not. Either way, Autistics who become adults are nearly invisible and Autistics who become parents are even more invisible than that.

Autistic parents have a hard time finding each other. they have a hard time finding information about their own situation — Google “autistic parent” and most of what you will end up with are links to information about being a non-autistic person with Autistic kids. Lots of Autistic parents are keeping a low profile or even “in the closet” if they are able to pass as non-autistic folks at all. There is a realistic fear of having one’s kids taken away by a society and a government that believes Autistic people are not competent parents. Other Autistic parents struggle with people’s attitudes — lots of people are very interested to hear about parenting Autistic children . . . until they realize that the information is coming from an Autistic adult. I would think people would be more, not less, interested in hearing what an Autistic person has to say about raising Autistic kids, but it turns out that, too often, that’s not the case at all.

Since I am not parenting kids, I want to turn to the voices of those who are. My dear friend Lei Wiley-Mydyske has a lot to say about what it’s like to be an Autistic adult parenting an Autistic kid. The way that people talk over and through Autistic people is doubled when they are talking to an Autistic parent of an Autistic kid. “They told me that I don’t know how his brain works like they do, because they are behaviorists and professionals who know about special education and I am just a radical whose brain is flawed just like his.Lei writes. (Pease follow the links and read every word she has written about how Autistic parents are silenced!) She is his parent. She is actually Autistic. And she is discounted as the person who knows the least about what he needs, because the school has autism awareness with no autism acceptance.

Being Autistic so often means being shut out of our own lives. People want to listen to what everyone else has to say about autism but get dismissive or angry when actually Autistic people want to join the dialogue that is about . . . . US! Can you imagine a world where only men are permitted to discuss women’s issues? What if only whites were allowed to talk about black issues? But we do live in a world where (unless you’re Temple Grandin) no one wants to hear what Autistics have to say about autism. We live in a world where the loudest voice about autism — Autism Speaks — actively works to silence the voices of actually Autistic people.

What? You didn’t know about that? The Autistic community got Google to change hate speech in their search engine and Autism Speaks reported it as something Google did, not something Autistic activists got Google to do. Autism Speaks made a documentary about AAC and focused only on the parents and caretakers, shutting out and denigrating the voices of people who actually use AAC to communicate. Autism Speaks quoted an Autistic  who protests them, twisting her words to make it appear as if she supports Autism Speaks and persistently refused to remove her words for years.

But as upsetting as it is that Autism Speaks does this to us, it is even more upsetting that the large organization is just echoing the way a majority of the general population respond to us. Look at the parenting blogs of non-autistic parents of Autistic kids and you will see that they have tens of thousands of followers. Look at the equally well-written blogs of Autistic parents of Autistic kids and you will see hundreds of followers, maybe a few thousand. There are a few Autistic authors with a high readership, but the bloggers talking about parenting Autistic children from the perspective of being an Autistic parent? Whatever the digital equivalent is of crickets chirping, that’s what’s surrounding their words.

Huffington Post ran a series of personal essays titled “Autism in our Family” and all the essays were written by non-autistic family members of Autistic people. Lei Wiley-Mydyske wrote and asked them why they had no Autistic voices and Huffington Post invited her to submit an essay. She wrote about being an Autistic adult raising an Autistic child and Huffington Post turned it down. Now, while I think it’s well-written, it could have been turned down for not being up to HuffPo’s preferred level of writing quality. But I would have thought that the fact that it was an essay about raising an Autistic child while Autistic one’s self would make the essay valuable enough for HuffPo to be willing to work with the author to help make the essay meet their publishing criteria. But that’s not what happened. And, once again, an actually Autistic voice went unheard.

Although you can hear it now. Lei published her essay in its entirety on her blog. “Every day, my son and I face discrimination and stigmatization for being openly Autistic. For all the “awareness” that is so popular now, there is very little understanding and even less in the way of authentic inclusion. We both need a lot of support in this world, and getting that support without being faced with a lot of hostility and resentment is difficult.” – from Autism and Activism in Our Family

Cynthia Kim is another cherished friend who is also a well-written Autistic parent. Not only is she a parent and actually Autistic herself, she interviewed many other Autistic mothers for a three-part article about parenting on the spectrum.

“If you Google “autism” and “mother,” you’ll find hundreds of references to mothers of autistic children for every mention of mothers who are autistic. It would be easy to assume–as perhaps many people have for a long time–that autistic mothers simply don’t exist. But if you dig a little deeper, you’ll find that not only do we exist, we have a unique experience of what it means to be a parent.” – from part one, Motherhood: Autistic Parenting

“In reality, there are already many autistic parents. Yet we seem to be largely invisible when it comes to autism-related supports. Services are available for autistic children and for parents of autistic children and for autistic adults who live with their parents or in supported living arrangements. But supports for autistic parents, regardless of their children’s neurology, are mostly absent from the landscape.” – from part two, Motherhood: Autistic Parenting and Supports That Make a Difference

“However, as an autistic parent, we have a secret weapon–one that can make our autistic children’s lives less challenging than our own have been. Kim echoed the sentiments of many autistic moms, explaining how she and her autistic son have a special bond: “We love and accept each other enough to be ourselves. I am able to help him put words to things he doesn’t yet understand. I am able to help him figure out sensory issues that bother him and help him find solutions that work for him. I’m a problem solver and I work at something ’til all the kinks are worked out.”

“Acceptance and understanding were common themes when autistic mothers talked about their parenting strengths. “It has been a huge benefit to have a shared neurology with my son,” says Puddy. Not only is she able to read his stress signals and coping levels, helping him to prevent escalations in his behavior, she says that “he finds great comfort in the fact that I can understand his need for routines and stimming that others see as odd.”” – from part three, Autistic Motherhood: Honoring Our Personal Choices

K is for Kids and that’s a realistic part of so many Autistic people’s lives. Autism awareness knows nothing of the many mothers and fathers out there who are actually Autistic themselves. Because autism awareness is so entangled with a rhetoric of tragedy, the very idea of Autistic parents would be shocking: what if they passed their genetics on and had Autistic children?! From an autism awareness perspective, the thought is horrifying. But autism acceptance recognizes that there are already hundreds, probably thousands, of actually Autistic people quietly parenting, invisible to society, struggling and celebrating. It is time to move past awareness and accept the Autistic parents among us, offering encouragement and support. And listening to them. After all, as much as I do love and respect my friends who are non-autistic parents of Autistic children, who can you turn to for the truly insider view of raising Autistic children? Obviously Autistic parents of Autistic children. These are the parenting experts who understand and can explain how to nurture the autistic neurology — they literally know it inside and out.

J is for Joke

JThis is an entry for the Blogging from A to Z Challenge. The entire month of April (except for Sundays) I will be blogging through the alphabet on autism-related topics to celebrate Autism Acceptance Month.

J is for Joke.



I am not a joke.


Autism awareness means more people know about us and can make mean jokes about us. I have seen and heard lots of people making fun of us. They wouldn’t do that if they weren’t aware of us. They also wouldn’t do it if they accepted us. This is why I will never work for autism awareness or disability awareness without acceptance automatically attached to it. Autism awareness is just awareness and leaves us exposed and vulnerable to mocking and abuse. Autism acceptance automatically includes autism awareness — because you can’t accept something without being aware of it — but autism acceptance goes a step further. Autism acceptance says not only that autism is real and everywhere around you, in roughly 1% of the population, but that Autistic people have value and should be treated with dignity, accommodation, and acceptance and not as a burden, a thing to fear, or a joke.


I was treated as a joke on Saturday because I do not move and talk the same way most people do. No one should be treated as a joke for being different. I was doing nothing wrong. I was trying to buy parts for a project I am building. I was hurting no one. Disability acceptance in general and autism acceptance specifically are movements that strive to teach others to be kind and understanding when they encounter those who look, sound, move, communicate, and live in ways that are different. I know I am not the only one who gets treated poorly for looking and sounding different. All the time, my friends are mentioning the ways they are treated for looking different, moving differently, using a wheelchair or an assistance animal.


I used to date a man with muscular dystrophy and when we would go out dancing, I would see people behind him pointing, laughing, imitating the way he danced. It made me angry and I didn’t know what to do. I didn’t want to tell him. I didn’t want to ruin our evening out. I couldn’t believe people would do that right in front of me, knowing I was with him. They hid their jokes from him but they didn’t bother to hide them from me. I never understood why people thought it was okay to make fun of my date right in front of me like that.


Saturday it was my turn to be mocked and the bullies didn’t bother to try to hide it from me. I was in a home improvement store, having a conversation with an employee about the materials I needed for my project, when two other employees approached, pushing carts of supplies. One of them turned to me and said, “is that a new dance you invented?” Then both of them did an exaggerated imitation of the way my body was moving while I was talking and they both laughed loudly. I was too shocked to respond. Did they think I would share their joke? Or were they really that cruel? It felt like being back in middle school again. I was horrified.


I tried to complete my shopping, but I felt humiliated and I felt shame because I was crying in public. I usually have a handkerchief but I’d forgotten to carry one that day so I ended up blowing my nose on my gloves. I put the materials I had intended to buy back on the shelves and left. I had to sit in my car and calm down before I could safely drive the few blocks to a competitor’s home improvement store where I was treated with kindness and acceptance. I was feeling particularly emotionally fragile, but everyone in the second store was kind to me and one of the employees who helped me was visibly disabled, making me feel like I was in a store that respects and values disabled people as employees and as customers. Being treated better at the second store helped restore some of my dignity, but still I didn’t sleep that night. I lay in bed, unable to chase away memories of being mocked for being different, unable to chase away tears of sorrow and shame.


Those men have probably long forgotten the “weird girl” they laughed at. I am still living with the emotional and physical consequences of the experience. I spent years trapped in schools full of bullies. There is a sort of complex PTSD that emerges from a childhood of being daily trapped in an environment of physical and emotional torment. Today I am exhausted, nauseated, and haunted by memories I had thought I’d put behind me. For them it was a moment’s amusement. For me it is days of recovery.


There were so many other J words on my list to choose from today and “joke” was not originally one of them. But at the last minute, I knew that this was my word today. I have been treated as a joke since childhood. No one should be treated as a joke! It is not okay to mock disabled people. Autism acceptance includes teaching people that we are not different on purpose and we do not deserve to be mocked for our differences. Making fun of us for the ways we don’t fit in will not teach us to fit in. It will only make us feel sad or angry and excluded. In those without a strong sense of self, it will make us feel bad and wrong about who we are. The world has enough pain and suffering in it already. Choose to bring light and happiness into the world. Choose to make others feel better about who they are, not worse. Do not make cruel jokes about the people around you. Choose acceptance.


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