I couldn’t have said it better myself.
My response to this one is brief but heartfelt:
I have been wanting to share thoughts on this topic, but it’s just so massive and painful.
Today I saw this link shared on Facebook.
She writes, “Allison is eleven years old. She loves Spiderman and Star Wars. The other kids mock her for carrying a Spiderman lunch box. Allison is taunted, ostracized, and even physically attacked by her peers.”
Seriously? Seriously? This is still happening? I mean, it was bad enough that the little boy was bullied for bringing a My Little Pony lunchbox to school, but that one didn’t surprise me (as much as it angered me).
I’ve heard people say these kids shouldn’t be allowed to have/do certain things because it makes them targets. Because bullying is inevitable and they should be taught to fit in more. “They’re just asking for trouble.”
Why can’t a boy use a “girly” lunchbox? Why can’t a girl have a geeky lunchbox? Why can’t an autistic child flap his hands in public? Why can’t a girl walk down the street holding hands with another girl?
Because other people are going to laugh or think they’re weird or tease them or physically assault them?
HOW IS THIS THE VICTIMS’ FAULTS?
No. I’ve had enough. We need to be teaching the PERPETRATORS, not the victims. We need to be changing THEIR behavior. Making THEM act more appropriately to fit in with society.
Bullying is not okay. I don’t care how “weird” a kid looks. I don’t care how unique or unusual they are. Because you know what? We are all unique individuals. And that should be celebrated, not squelched.
And you know what we call it when it happens outside of school? Hate crimes. People are even killed. This is serious stuff, people.
And you know what? I’m sick of the nonsense coming out of my own “Christian camp.” I’m all for respecting the fact that God created men and women to be different in some ways. But these “differences” the kids are being bullied for? Those are cultural gender norms, not God’s. Like Sunnie, the little girl who got kicked out of her Christian school for being a tomboy. The school told her grandparents that they can refuse students who are, “Condoning sexual immorality, practicing a homosexual lifestyle or alternative gender identity.” Because she’s causing confusion amongst students as to whether she’s a girl or boy. By the way, Sunnie says she knows she’s a girl. We’re not even talking about a transgender child here. Just one who was told that “her dress and behavior need to follow suit with her God-ordained identity.” (Quotes and info from this Daily Mail article) (OH, and the thing that really drove me mad? I read that she originally cut off her long hair when she was three to donate it to cancer patients.) I’ll tell you what, me and my two close friends are some of the biggest tomboys I’ve ever met. And I can assure you that all three of us are very much heterosexual. We respect that God made us women, but we don’t feel the need to be “girly” in the way our society expects of us.
In my field, people talk a lot about getting autistic kids to have more “age-appropriate” interests. They would say that my 10-year-old client shouldn’t be watching videos aimed at preschoolers and playing with his Thomas trains all afternoon. I agree that developing “age-appropriate” interests makes it a heck of a lot easier to relate to peers and make friends. But trying to take away these special interests is cruel. This is a great time for you to go read this blog post, “The Obsessive Joy of Autism.”
So yeah, if I had a kid who was doing something that made him or her a target, I might even encourage them to tone it down if it was a matter of safety and the thing itself wasn’t huge to them. But that’s like putting a band-aid on a very huge, infected wound. It’s only temporary.
We need to be teaching children to respect and love diversity. To understand that not everyone is just like them, and to realize that this is what makes the world so darn cool. To treat every human being they meet with respect. I know it’s not easy. It’s easier to try to make quirky kids fit in.
Recently I read this blog post and I wanted to share it here. This should be required reading for all children:
While you’re off reading that, I’ll be returning my attention to the feminine art of quilting. I’m currently working on the Shredder, from the 80’s Ninja Turtles cartoon.
I recently had a phone conversation with a new acquaintance, who pulled the “You think you’re autistic? I don’t see it” line. I laughed and said, “You don’t know me well enough yet,” instead of saying, “Wow, I’ve spent nearly 30 years pretending and practicing to be normal – glad I was able to fool you – on the phone – for a single hour! How dare you – you who say you haven’t even talked with an autistic person before – try to tell me who and what I am, as though you – who don’t know me AT ALL – know me better than I know myself?” It was the first time I’ve had to deal with that kind of dismissive attitude, but then again it was also the first time I have explained my self-diagnosis to someone who hasn’t actually known me for a while.
(here are “20 Things Not to Say to a Person with Aspergers“)
Then the drama struck when we were later texting instead of talking, and I was confused by something he said, and responded in a way that he found hurtful. I couldn’t even tell which of my comments could be taken as hurtful, so I had to ask what it was I said. After the conversation, I was feeling really upset over yet again failing at human interaction, but at the same time I was pleased to see growth in my self-awareness and ability to express it. I think reading other Aspies’ writings and working on my own has helped with that.
Here were some of my shared thoughts:
- I don’t know how to take things when I don’t know someone well. It can be especially hard when texting.
- When I don’t know what to say, I don’t say anything. Sometimes it’s hard to figure out my thoughts and put them into words, too. Especially when I don’t know what the person I’m talking to is thinking, so I don’t know what I should even be responding to.
- Like you, I pull away from pain. And that includes pain unintentionally inflicted on others. It reminds me how often I misunderstand and am misunderstood. And if I’m gonna hurt people, I’d rather just sit alone with my cat.
- And it takes me time to get to know someone and know how to interpret all they say and do. Until then, interactions can be confusing and frustrating for me.
- I’m not saying I’m never understood, I’m just saying that understanding others and being understood is a frequent struggle for me.
Today I stumbled upon this post by Cynthia Kim at Musings of an Aspie, “The Seductive Illusion of Normal.” This passage really fit how I’m feeling today:
I don’t live in a vacuum. I say and do stuff. People around me are affected by it. Even though they know I struggle with certain things–they know this logically. That doesn’t prevent them from being affected by my words or actions or lack of words or actions.
This is when the wish to be normal sneaks up and grabs me.
I’m using normal and not neurotypical here for a reason. Normal is an illusion and I know it’s the illusion that I’m wishing for at these times. I’m not wishing for a different neurology so much as a fantasy version of life.
It’s easy to be seduced by the idea that being normal would solve everything, that it would make the lives of the people around me easier. But, of course it wouldn’t. We’d have some other problems instead, because life is like that.
And still it’s there, born out of frustration and insecurity, of a sense of never quite being good enough or right enough or just plain enough.
Maybe it’s a self-esteem issue. Mine has never been especially good. I seesaw between overconfidence and underconfidence, with no idea where the sweet spot in-between lies. Does anyone truly know this? I’m not sure.
For the last several months I’ve been experiencing a deep crisis of faith. Not my Christian faith, but rather my faith in what I do as a TSS. For those of you unfamiliar with the TSS position, it stands for Therapeutic Support Staff. Most of the children served by my agency (and all the kids that I have worked with) are on the autism spectrum, though there are other diagnoses/issues that can cause a recommendation for services. Here’s how it works: after an intake evaluation, a child may get a BSC, who is a master’s level clinician. The BSC consults with the caregivers and school (if relevant) and develops a treatment plan full of objectives and interventions. Then the TSS, a bachelor’s level therapist, implements the interventions (while teaching caregivers/teachers to use them) and collects data and documentation (the bane of my existence).
I worked for another agency for a year and nine months before reaching burnout point and moving home, and I have worked for this agency just as long. I’ve always been really good at my job – at least, especially good at the working-with-the-kids part, because I *get* them and can tell what’s going on with them before most other adults in their lives. I always figured it was because I have empathy for autistic kids because of my cousins, and because I’m a highly sensitive person myself, and because I’ve studied a lot about autism. But last summer when I realized I have Asperger’s, I started to not only empathize with and understand the kids but also identify with them. And in many ways that has made my job much harder. One day I exclaimed in frustration, “I feel like I’m disguised, helping those adults to oppress my people!” My mom chuckled, but it’s a real feeling.
A big component in the development of my Crisis of Faith was reading a few blog posts as I was exploring my own self-diagnosis.
[Warning – this post is going to involve a lot of “recommended reading.” I’ll try to summarize the key idea of each link I post, but they are all worth reading.]
One of the first was “Quiet Hands.” As I read this post, my heart sank. How many times have I, following the leads of the adults in charge at school, tried to suppress my clients’ stims? Sure, I’ve suggested things like fidget toys as alternatives; and sure, most of my main client’s hand movements are accompanied by disruptive sound effects (think Angry Birds; that’s the game he’s usually playing in his head while stimming with his hands). But I’ve also used this visual:
Which brings me to the next blog, which I think is actually where I saw the previous link. “On Failing Kindergarten,” by Alyssa on Yes, That Too. I spent all last year, and most of this one, watching the staff in autism support rooms trying to make kids follow these rules. I’ve felt frustrated with them making a kid sit with his feet on the floor in front of him, when the kid is trying to sit on his foot or sit cross-legged in the chair- like I do. I’m so uncomfortable with conflict and speaking up. . . if I’m in a situation where I don’t think my advice will be heeded I am unlikely to offer it. But I’ve tried to muster courage to be a sort of advocate when I can. In that specific example I did finally say, “I have trouble sitting on these hard chairs; have you tried one of those squishy things they can sit on?” (I’ve seen them at the school.) The teacher shrugged it off with a, “We’ve tried everything” (not true) and resumed firmly demanding he sit “right” in the chair, threatening him with the weighted lap pad instead of offering it as a good thing.
Situations like that are difficult, because I am a guest in these classrooms and it is not my place to tell the teachers what they’re doing wrong. . . I’m there to explain interventions that work for my client and model them. And like I said, I am uncomfortable. I’m too afraid to say things that will cause discord or bad feelings, since I have to be around these people every day. I was yelled at once at work while trying to implement an intervention and nearly cried; I was terrified of seeing the person again. Although I tried to act normally around them I was also very wary. So I have the internal conflict of watching treatment I strongly disagree with but being afraid of trying to change it.
Here is an example of what it’s like to *see* what the people in charge do not see when an autistic student is acting out. Her writing powerfully conveys the feeling of heartbreak and helplessness I often feel in such situations. – “What I Saw” by AutisticChick
I’ve only read a few of Matt Walsh’s posts and I don’t agree with everything he says. But I really liked most of what he says in, “Help, doc, I’m bored by boring things. I think I’ve got the ADHD!” I agree that medication is over-prescribed, but I think he’s a little too strongly anti-meds (for an example of a family who dramatically benefits from meds, check out the BBC documentary Living with ADHD).
Here’s the main point of this post summed up in two quotes:
What if — this is a big IF — what if people are all, like, different?
Don’t stop reading yet. Seriously, think about it. What if there ISN’T actually some preordained mold of behavior and thought in which we’re all supposed to fit? What if it’s OK for some people to be a certain way, while others are another way, and still others are an entirely different way? What if some people are active, and some people aren’t; some people are creative, and some people aren’t; some people have a lot of energy, and some people don’t; some people are daydreamers, and some people aren’t? What if — again, HUGE if — but what if we tried to find a place for the unique qualities of all men and women, rather than attempting to chemically eradicate entire personality types simply because they don’t gel with our artificial societal constructs?
What if we stopped trying to make our kids “normal,” and instead encouraged them to be exceptional?
Could it be that our kids are distracted because they’re surrounded by distractions? Could they be overstimulated because they’re surrounded by stimulation? Could they have trouble paying attention in school because school is tedious and boring?
I really loved that second quote.
I also read one of his rants about public schooling and homeschooling; again, I don’t agree with everything he says, but he made points that resonated and further weakened my already shaky faith in the public school system. And let me tell you, I have had the privilege of working with some amazingly wonderful educators. Ever since I was a child I have had respect and affection for good teachers, and it continues to this day. From what I’ve seen, the school I mostly work in right now is a great school, at least by the standards of the schools I have seen or attended. However. . . more and more I’m seeing how it really doesn’t work for everyone. I see kids falling through the cracks, because even the best teachers are only human and have too much on their plates (crowded classes, heavy workloads, lack of parental involvement, etc). I cannot emphasize enough how much I respect most of these teachers; I honestly cannot think of a single negative thing to say about my client’s second grade teacher, for example. But when I’m sitting there trying to get this kid to stop his noisy stimming while the class is taking turns reading, I have to wonder, “Why are we here?” He pretty much never gets anything out of the lessons in the gen-ed classroom; he learns and works much better one-on-one. Most of our time in the gen-ed room is spent trying to keep him quiet and on task; if he doesn’t have a specific task in front of him like a worksheet it’s rough. So why is he there? To try to learn how to sit still and quiet and listen to group instruction? That leads to the next question – Why? Does he really need those skills? I mean, what kind of additional education is he going to seek in the future, and what kind of job? When I think about it, most jobs don’t involve the kind of “skills” he’s supposed to be learning in school. I am all for him spending time with the gen-ed kids, not only for his benefit but for theirs. We didn’t have any kids like him in my class growing up. In fact, I have so little exposure to individuals who have labels like ID that when I first started going to a Life Skills classroom with another client I felt VERY uncomfortable around those kids, much to my shame. But the kids in my younger client’s class – they accept him. They are willing to help and prompt him and pester him for high-fives. I’ve seen bright and social young boys give up doing something “normal” with their friends at recess to interact with my client and help him practice things like tossing and kicking a ball – and this without any adults suggesting they do so. In those moments I feel hope for the future.
So, what are the next steps? Well, my first personal step is switching gears and going back to college to study Information Sciences and Technology. After we discovered my place on the spectrum, my mom encouraged me to look at career fields that would be a better fit for someone with Asperger’s. I start classes next month and will continue working as a TSS part-time for as long as I can manage doing both. Another step has been slowly “coming out” at work. I didn’t make a big formal announcement, but if I’m chatting with someone about a student’s specific behavior I will say something like, “I can really understand why he has a hard time with the noise in the cafeteria. I started wearing earplugs in there! I’ve come to realize that if there had been more awareness when I was a kid I would have been diagnosed, myself. Loud noises like that are overstimulating to me and make me feel really anxious. Do you think he’d tolerate some kind of ear protection for in there?” I don’t make a big deal about it, but I want them to know I’m giving advice not just as a trained TSS but as an autistic person. An also-autistic person speaking for and defending the rights of these autistic kids who don’t yet know how to speak up for themselves. Which leads me to a third step – promoting true “Autism awareness” by encouraging autistics to raise their voices and NTs to start listening.
I’m typing this and I haven’t even finished reading the post – I like it that much.
My words can express an agreement and hide my dislike for certain things, but my body language is almost incapable.
Even large family gatherings with people who love us can make us anxious. When you dismiss our anxiety with a wave of your hand and a roll of your eyes, you say our feelings don’t matter. Your dismissal of my feelings increases my anxiety because I feel I have disappointed you. I feel like I cannot do anything right.
Because sensory issues play a big part in our lives, we often prefer specific foods. Forcing us to try new foods and chastising us if we don’t proves to me that you don’t respect my boundaries. I am an adult. I know what I like and what I don’t.
I finished reading it and wanted to shout, “Amen!” and show it to everyone I know. Here’s my first step:
As a TSS I work in schools around a lot of autistic kids. . . and I see.
Question: do non-autistic people really not have a stream of consciousness that sounds like this? It wears me out.
Thoughts about empathy have been swirling around my head for weeks, and I’ve been wanting to write something about it. . . but this is a topic that could easily be researched for a dissertation. Instead of trying to write a cohesive essay I’m just going to catalog some thoughts here.
I instantly become defensive when people talk about autistics and their ability to care about others. I have reacted this way for years, even before I considered myself on the spectrum. For example, at a meeting a coworker was talking about her brother who has Asperger’s, and his reaction to someone close to him dying. I can’t remember what she said verbatim, but the gist was, “He didn’t really seem upset about it. They just don’t make that connection with other people. He didn’t want to talk about it.” Without pacing the room and waving my arms around and shouting, “I’m autistic, too! We are human! We have emotions and love people!” I quietly tried to bring a little perspective. I suggested that perhaps he didn’t seem upset because people on the spectrum often don’t understand and express their emotions the same way neurotypicals do. I added that funerals and the like can be really uncomfortable situations, with all those people crying and putting out negative vibes and maybe he was struggling to deal with that, rather than showing his own grief in a recognizable way. I also suggested that individuals with Asperger’s are often logical people who want to fix things, and he might see talking about the situation as pointless because “What good will it do?”
I think one of the problems is, how do we define empathy? I have Tony Attwood’s book Asperger’s Syndrome (1998) on my shelf, and I pulled it down to see what he had to say about empathy. A search via the index gave me this (p 55, 56):
The original list of features for Asperger’s Syndrome includes the comment that the child lacks empathy. This should not be misinterpreted as meaning that the child completely lacks the ability to care for others. It is more that they an be confused by the emotions of others and have difficulty expressing their own feelings.
But wait – isn’t “caring for others” what most people are thinking of when they talk about empathy? I get the sense from things I read/hear that a lot of people think that autistic people don’t care about the feelings of others, that they’re unfeeling robots. The almighty Wikipedia says, “Empathy has many different definitions that encompass a broad range of emotional states, such as caring for other people and having a desire to help them; experiencing emotions that match another person’s emotions; discerning what another person is thinking or feeling; and making less distinct the differences between the self and the other.” (emphasis added) Clearly people on the spectrum don’t (as a whole) lack the ability to care for others and want to help them. It’s the other aspects of empathy that can be difficult, like “discerning what another person is thinking or feeling.”
It seems like this “lack of empathy” (or perhaps we should call it, “misunderstanding others”) isn’t reserved only for autistics.
This author says it well:
I think it’s important to draw attention to the fact that this lack of understanding goes both ways. I find that when people on the autistic spectrum fail to understand someone’s reaction, this is seen as ‘lack of empathy’ – but, when someone who is not on the autistic spectrum fails to understand the reaction of an autistic person, this is seen as a case of ‘autistic people are a puzzle’ and a justification for representing us as a jigsaw puzzle piece. These double standards are unhelpful. They place all responsibility for lack of understanding on the autistic person, and create a divide between those who are on the spectrum and those who aren’t.
Rachel Cohen-Rottenberg states in her Critique of the Empathy Quotient (EQ) Test:
After all, if the statement about intuitively reading awkwardness or discomfort assumed that the respondent were looking at an autistic person, the results would come out quite differently, for two reasons: a) autistic people stand a better chance of reading one another’s signals properly, and b) non-autistic people usually find it very difficult to read autistic people’s signals properly.
NTs may be better at reading NTs than autistics are, but autistics are better at reading other autistics than NTs are.
I believe this is one of the reasons I am a good TSS. Often I’m more likely to accurately guess what’s going on in my clients’ heads than even their caregivers are. Here’s one example:
A young autistic girl was screaming under the kitchen table while I talked with her mom and her BSC. She hadn’t yet been given her medication. When her mother directed her to take the medication she refused, and so the mom told her to stand in time-out (a spot in the kitchen with us). The girl stood there for a minute but then went over and closed the sliding-glass door that led outside. Her mother yelled at her for leaving time-out. I told the women that I heard a car drive past right before the child closed the door, and maybe that was the antecedent. The BSC agreed that the girl was probably over-stimulated and the car was extra loud to her, even though the two other women hadn’t noticed it. The mom then stopped reprimanding the girl, and after getting her to take her pill she had her go to her quiet bedroom to calm down until it kicked in.
As a bit of an aside, here is a beautiful post that may help you empathize with the sadness of someone with AS – “10 Things Not to Say or Do When I am Sad.”
A wonderful example of NT/AS misunderstanding was on “The Hofstadter Insufficiency” episode of The Big Bang Theory. Starting at minute 1:45 in this video, Sheldon shares something personal with Penny.
Imagine a row of people watching an emotional movie, such as the recent version of Les Mis. Three of them are crying, and one isn’t. Would you assume the first three are feeling empathy for the character singing on-screen, and the fourth was cold and unfeeling? Maybe.
The first person is thinking about the character’s situation and feelings, and she’s empathizing and feeling their emotional pain.
The second is crying because the song was a favorite of his late mother, and he’s grieving for his loss.
The third is having memories of her own past hurts stirred by the words of the song.
And then there’s me. I’m literally thinking, “This is a really sad song. I can’t imagine how horrible it would be to be in her situation and feeling all of those things. And if I let myself think of her sadness or my own past heartaches, I will cry. I hate feeling negative emotions, and I HATE crying in public. . . so I’m putting up the wall. Look at that – they’re using a really narrow depth of field. Why don’t they keep his eyes in focus? That’s Photography 101. Obviously they’re doing it on purpose, but I really don’t care to stare at this guy’s nose-pores. This is weird.” And I focus on the cinematography and random details for the rest of the film.
The empathy issue was actually the biggest reason I thought I wouldn’t qualify for an autism diagnosis. I’ve always felt *too* sensitive to the emotional states of others, as well as their hidden feelings at times. In Rudy Simone’s excellent book Aspergirls, she says that women with AS can have heightened “psychic sensitivity” and can sense things like others’ true intentions hidden behind their outward appearance and words. Tony Attwood mentions this as well in this forward. And in this post on the topic, Tania Ann Marshall even cites the Highly Sensitive Person website that helped me so much in college. In these cases, it seems like women with AS are using this “sixth sense” to compensate for not being able to read people the same way neurotypicals do.
Here are two posts that talk about people with AS feeling too much empathy:
In my readings and wanderings, I also came across Aspies who fought against the push to say autistics don’t have an empathy problem.
Here’s a very short one – “Stop Making Value Judgements about Empathy Please”
“The Empathy Conundrum“- I’ve mentioned before that I’m a big fan of the Musings of an Aspie blog. I really appreciate this post, and it gives a good balance to the discussion on empathy. In fact, re-reading it now I feel like she has much better things to say about empathy than I do, but since I’ve already typed up most of this post I’ll keep it.
One day I was reading a link someone shared on facebook, and on the side of the page saw a link to another article titled, “10 Symptoms of Asperger’s Syndrome.” Feeling a little trepidation about what might be said regarding AS, I clicked the link. The third symptom listed is “Inability to Empathize.”
Individuals with Asperger’s syndrome may find difficulty empathizing with others. As they age, the affected person will learn the accepted social response for interacting with others. While they may react appropriately and say the “right” things, they may not understand why the other person is truly upset. This can be an issue in childhood as the individual with Asperger’s may play too roughly with their peers or say cruel things, unknowingly hurting the other person. When confronted for this behaviour, the child may respond that what they said was true and they do not understand the issue.
Oops. I recently made an off-hand comment online that caused a dear friend to cry; that was definitely not my intention, and obviously I couldn’t see how it would upset her, or I wouldn’t have posted it. And I can’t tell you how many times (both growing up and even in the past few years) I have said something to my sister that really upset her, and my mom would reprimand me and have to explain to me why she was upset. Usually my first reaction in those situations wasn’t to feel sorry – it was to feel frustrated and annoyed that she responded that way, because I “couldn’t see what the big deal was.” Especially if I thought I was just stating a neutral fact.
Maybe I have a problem with empathy after all.
So fun! I love that it has a simultaneously lighthearted and down-to-earth tone; he includes both the positives and the negatives without overly dwelling on either.