V is for Vulnerable to Violence and Victimization

V This is an entry for the Blogging from A to Z Challenge. I didn’t quite make it in April. I moved in May. I’m finishing the alphabet in June and July.

The ABCs of Autism Acceptance series has been picked up by Autonomous Press and will be published in book form, with additional material, in June 2016. Watch for it!

V is for Vulnerable to Violence and Victimization

It is ironic that so many people fear us when Autistic people are much more likely to be subject to violence and abuse than to perpetrate it against others. I’m not saying that we are incapable of being harmful or abusive. Yes, there have been abusive Autistic people and Autistic people who have a difficult time controlling anger.  But violence is less common among us and we are so vulnerable and, in some cases, so naïve that we can be easy targets for predators and abusers. In fact, I’ve discovered that there are some predators who single us out intentionally, because we are Autistic and thus easier to manipulate, more likely to have a weak personal support system to protect us, and more likely to have gone through compliance training that teaches us to accept abuse as a normal part of life.

Now, I know I’ve already talked about bullying, but when I talk about violence and victimization, I’m talking about something more sinister. There are predators out there who seek out disabled children and adults specifically. A free booklet discusses “disability trolls”– people who have sexual fetishes for disabilities and make fake profiles to try to get close to people in wheelchairs, amputees, and other physically disabled people. What makes things less clear when it comes to Autism is that there are some predators who specifically seek out Autistic people and others who seem to have a radar for vulnerability so a large percentage of the people they prey on are Autistic, but more as a coincidence, due to Autistic people having a tendency toward more vulnerability than the general population.

A study by Sobsey and Doe (1991)  found that not only are people with disabilities sexually abused more often than the general population, but that the abuse tends to be repeated again and again, chronically. Sobsey and Doe found that 49% of people with intellectual disability will experience sexual abuse or assault 10 or more times in their lives. Sullivan and Knutson (2000) found that people who are multiply disabled (for example autism and epilepsy, autism and intellectual disability, autism and psychiatric disability, etc.) are at greater risk of sexual assault and abuse. The types of disabilities most likely to be abused, according to Sullivan and Knutson, were those with intellectual disabilities, communication disabilities, and behavioral disabilities — all three are labels that are frequently attached to Autistic people. In short, disabled people are well over three times more likely to be assaulted and abused than the general population and Autistic people, particularly Autistic women, are among the most assaulted and abused of all disabled people. Sobsey and Doe found that 83% of their study sample of women with developmental disabilities had been sexually assaulted at least once in their lives.

And the victimization is not just sexual. A 1992 study of disabled people using a third-party payment system (disability benefits being sent to someone other than the disabled person themselves, typically a caregiver or financial manager) and found that 20% of the third-party recipients were victims of crimes ranging from larceny to murder and “slave trading,” a practice where disabled people are bought and sold from payee to payee, getting little or no actual care and being valued only for their benefit check.  Additionally, the victimization of disabled people is greatly downplayed. It is often reported in the system and in the media as “abuse and neglect”  instead of as the actual crimes that occurred, such as rape, assault, or murder. Crimes against disabled people often go unreported altogether due to being committed by people upon whom the disabled person depends for survival. As bad as the situation appears — and the appearance is quite bad enough — the reality is much, much worse.

Those who have read my previous book, No You Don’t, or the title essay from the collection know that I have had a long history of victimization spanning decades. At this point in my life, I have learned most of the ways predators enlist victims and am, thankfully, able to avoid the kinds of abuse and exploitation that marred my childhood, teens, twenties, thirties, and parts of my forties. But I am still vulnerable and I had a run-in with a predator just a few years ago.  I am skeptical, a quick learner, and a reflective thinker, but I have some difficulty with generalizing knowledge. My classic example from my life is that I have known for many years not to accept a package from a stranger in an airport or bus station but I didn’t generalize that to “don’t take a package from a stranger anywhere” and I didn’t realize a classmate in my university class counted as a stranger — after all, I saw her in class three times a week, even though I never spoke with her, so how could she be a stranger? But I accepted a mystery gift she gave me, claiming it was from someone else I had never heard of before. It turned out to be a humiliating joke that I opened in front of everyone and immediately regretted.

I think this is one factor in the repeated victimization of those of us with developmental disabilities. While difficulty generalizing situations is not universal among us, I’m not the only one who struggles with it. It makes it harder for me to learn how to avoid being victimized because if the approach happens in a different way or a different place or even something simple is changed like the gender or age of the predator I can fall for the same thing all over again, feeling foolish afterward when I make the connection and realize that I missed seeing something that I had already learned before. There are many other factors to re-victimization. A few of them include: not being able to figure out how to break out of a repeated “script,” being too afraid of offending or making someone angry to resist, lacking strong boundaries (often due to the abuses of ABA “therapy”), being lonely and having little social experience to raise skepticism about offers of instant friendship.

My predator from a few years ago was hard for me to spot, in part because I have grown accustomed to predators who want sexual attention from me or who want my money (meager though it is.) This predator was harder to spot because they were looking for something else. I’m not entirely sure what they were seeking, but it involved attention, validation, admiration, and control over others. When they made their first overture to me — offering to mail me a present — they seemed safe and trustworthy because we had 62 mutual friends on Facebook. The huge overlap of our friends’ lists made them seem legitimate and a trusted member of the autism/Autistic community. I had never noticed the person before so I don’t know how long they had been in community, but it is easy to slip in to the Autistic community on Facebook since many people follow the same policy of accepting a friend request from anyone who has at least a few friends in common. (I no longer follow that practice, having been burned by my predator. I now will not accept a friend request from someone unless I have at least talked to them a little. And I periodically “purge” my friend list of the people who “friended and forgot” because they rapidly become an unknown stranger on my friend list if they don’t interact with me.)

It took me a while to figure out what I had gotten into with this predator. They seemed so safe in the beginning. But sending me a gift meant they knew my address. They quickly wormed their way into my life and started trying to plan it for me. It was all “dangling carrots” sort of control — every time they learned about something I wanted or wanted to do, they would say they could help me get or do it and then start manipulating me with all their offers of presents and “help.” Before I knew it, I was caught up in a big plan that included coming out to where I lived and throwing all my stuff into a moving van and taking me to live with them and their spouse (who they spoke disparagingly of and who they also manipulated and controlled.)

They had high demands of my time and energy. They wanted me to video Skype with them for hours every day. I protested, because it was taking up all my time and energy and leaving nothing for me. I couldn’t get housework done, I couldn’t write, I couldn’t just rest and stare at the wall — a favorite pastime of mine, similar to running a defrag program on a hard drive. I became frazzled and stressed. They wouldn’t take no for an answer. They grew more and more demanding. Just as I was about to pull away from them, they started saying they thought they might be Autistic, too. They wanted my help and advice. They pulled me back in. Their demands got larger — I was going to move in with them and go into business with them. I could see that they wanted me because a diagnosed Autistic person would add an air of legitimacy to their business. They were using me as an object, not treating me as a human being.

It all came to a head when my electricity got shut off temporarily due to a clerical error and a lost payment. I was relaxing in the dark. I was stressed. I was naked. There was a knock at the door. I ignored it, as I always do when I’m not expecting anyone. They said they were the police and I froze in fear. They broke down my door — it turned out that my predator had gotten frustrated at not being able to reach me for a Skype visit and sent the police to my door for a welfare check. I don’t want to go into all the results of that welfare check, but I will leave you to just imagine how it went. How would you expect the police to respond when sent to an apartment by a frantic sounding person telling all sorts of wild tales? What would you expect their response to be when they knocked, heard movement, broke the door, and found a naked person, incapable of speech, sitting in the darkness in an apartment with no utilities? It did not go well.

That gave me the courage to break off the interactions with my predator. I was fortunate that the victimization never went past the level of emotional manipulation, but if they had swooped me up and moved me to their home, who knows what would have happened once I was isolated and under their control? And “swoop” is the right word here — the entire “relationship” went from innocent-seeming gift to police breaking down my door in less than two weeks. It all moved so fast and was so overwhelming. I was always several steps behind in understanding what was happening. They took advantage of my Autistic traits and used them against me to corral me into a completely untenable position.

Autism acceptance means presuming competence, but it also means building a community that helps Autistic people defend ourselves against predators. The standard education children get about “stranger danger” is not enough. So many times, the predator is not a stranger or they are very skilled at convincing their target that they are not really a stranger. Predators try to overwhelm us by moving things along fast. Autistic people need to know that it’s okay to slow down, to take our time, to think things through. People who demand instant answers and instant actions from us should be questioned. If they are truly on our side, they will accept a slow response. Demanding that we keep up their fast pace is a “red flag” that can help warn us that a person might not have our best interests at heart.

We need to learn how to locate mentors in the community who we can turn to for sound advice. A mentor could be a parent, a teacher, a trusted therapist, a friend — anyone who has a proven track record of helping us to make decisions that are good for us and come from our own choices. If a new person comes into your life and wants your address, your phone number, wants to make grand plans to uproot your life, wants to push you to a more intimate friendship than you are ready for — anything that makes you uncomfortable — it is good to be able to talk it through with a mentor. It can be a dangerous world and we Autistics are vulnerable. There are people who know that and seek us out to use, exploit, manipulate, and more. We need to be careful and autism acceptance recognizes the risks while working to protect our autonomy and dignity. A person can be competent yet operating under incomplete information. Presume competence, but help us steer a safe course when we ask for advice. Help us steer our own course — don’t choose for us. But help us see the potential obstacles and learn how to avoid them.

 

 

 

 

U is for Unity

UThis is an entry for the Blogging from A to Z Challenge. I didn’t quite make it in April. I moved in May. I’m finishing the alphabet in June.

The ABCs of Autism Acceptance series has been picked up by Autonomous Press and will be published in book form, with additional material, in June 2016. Watch for it!

U is for Unity

“The point in history a which we stand is full of promise and danger. The world will either move toward unity and widely shared prosperity – or it will move apart.” – Franklin D. Roosevelt

Which direction have we moved since Roosevelt’s warning?

I look around me and see a world that is struggling to move toward unity but which still has a long way to go toward that goal. Compared with that point in history at which Roosevelt was speaking, we have made much progress in unity among people who are racially diverse, who adhere to diverse religions or no religion, who have different genders. We have passed ADA and work daily to enforce it. We have taken steps to address class and income diversity. Yet we see racial conflict daily and the United States is still a place where white people benefit, mostly unconsciously, from institutionalized racism. We still see battles between adherents of different religions, mistrust and discrimination against people based on religion — particularly discrimination directed toward Muslim Americans, mistrust and fear directed toward atheists (an academic study of public opinion found that more people would trust a known rapist than would trust a known atheist), employment glass ceilings for women and those of minority genders, ableism and abuse of disabled people both in institutions and homes, sheltered workshops where disabled people are paid pennies for their work, and the income gap is wider than it is been at any time since the Great Depression.

Autism acceptance demands joining the struggle toward unity. When I call for unity, I’m not saying that everyone should be the same as everyone else. I am talking about the kind of unity composer Felix Mendelssohn spoke of when he said, “the essence of beauty is unity in variety,” or the unity of George Herbert Mead’s  declaration that “society is unity in diversity.” I am calling for an understanding of our interconnectedness coupled with a respect for human diversity in all spheres of our being, including, of course, neurodiversity.

In my experience, Autistic people and our allies are too often isolated from the larger disability community. Ari Ne’eman, co-founder of the Autistic Self-Advocacy Network (ASAN) and the first Autistic person to serve on the National Council on Disability spoke of this separation in a roundtable discussion in 2012, saying:

I think we have a tremendous amount to learn from the larger disability world, and I fear this is something that autism does not do a very good job of. No one who had absorbed the lessons of Willowbrook and Pennhurst would think it was a good idea to build special “Gated Communities” to house autistic adults and others with intellectual and developmental disabilities. No one who knows the history of the Jerry Lewis telethon and the objections made by people with muscular dystrophy to being portrayed as pitiful, “half-people” by its star would ever conceive of something like the “I Am Autismvideo. No one who knew the names Ed Roberts, Judy Heumann or Justin Dart and the history of all they accomplished for people with disabilities would ever doubt the meaning and importance of self-advocacy by and for us, instead of on our behalf. Yet, these are not things we think about or have even heard of in the autism world.

Things are slowly changing since Ne’eman made these observations, but still so much of the world of autism is isolated. Mainly it is Autistic academics and activists who are venturing beyond our borders, but the larger Autistic/autism community is opening to wider unity all the time. We are forging close alliance with others with developmental disabilities, particularly people with Down Syndrome and Cerebral Palsy, but our connections don’t stop there. The larger disability community has battled an internal schism for years and the time is ripe for Autistic activists to join the fight against internal ableism. For so many years, many of those with mobility disabilities and other physical disabilities have said things like, “my body is impaired but my mind is strong and good.” This is a very understandable thing to say, but it created a climate unfriendly to those with neurological and psychiatric disabilities. The larger disability community is strongly challenging those attitudes now, though, and as a result there is increased unity among people of diverse disabilities, increased solidarity, increased ability for all of us to work together for the rights of all of us.

It is time for Autistics and our friends, families, and allies to join the larger fight. It is time for us to turn our attention outward and work to help others as we allow them to help us. We are all connected through the shared experience of disability. Our disabilities are different — just as each Autistic person has their own, individual experience of autism — but the stigma and social barriers we face are strikingly similar. Autistic people and the rest of the disability community have much to offer each other. But I think many Autistic people and their supporters shy away from working within the larger disability community because of fear of that word, “disabled.” That fear points to an internal division within the Autistic/autism community that needs to be mended as well.

Within the Autistic community, there is a schism not terribly different from the brain/body schism the larger disability community is working to heal. Within our community, there are those who insist on only portraying autism’s strengths, who fear words like “disability,” who cling to the label “Asperger’s” which is no longer a diagnostic category and is in the process of fading into the past as a piece of medical and autistic history, not unlike other terms such as “dementia praecox,” “manic-depression,” or “sexual inversion.” Now that all forms of autism have been united under a single label, the main purpose (other than historical) of the word “Asperger’s” is to draw an “us vs. them” distinction within the neurotribe of autism. It is a “dog whistle” that speaks a code of “functioning labels” and  supremacy. It is a way to say, “don’t mistake us for those people who wear adult diapers and a head-restraining device.” It is a way to maintain division within the community.

And division will not move us closer to unity.

And Autism Acceptance demands a call for unity.

Autistic people who say “different, not disabled” need to stop and think about the message they are putting forth. Because of their fear of being considered less-than, because of their fear of taking on the stigma fellow Autistics  live with every day, because they are hovering at the fringes of activism and advocacy, trying to “pass” as non-autistic and focus only on Autistic strengths while often diminishing or dismissing Autistic needs, they are actively working to increase division in the community. Those who don’t have the privilege of passing, even for a short time, are left out of their description of Autism. In insisting that autism is not a disability, they drain the compassion of those who would otherwise want to assist and accommodate us. In insisting that autism is not a disability, they help make the overall movement of autistic advocacy and self-advocacy look like a game or a collection of lies — anyone who knows or is an Autistic person who cannot pass and requires accommodation can see right through that game and can see the harm it does to the larger Autistic community.

Autism is a difference AND a disability. Disability does not mean “incapable of anything.” It does not mean “less than.” It simply means having some condition that contributes to some limits in a person, both inherently (such as not being able to speak or not being able to recognize faces) and socially (such as being passed over for jobs because of a cultural lack of belief in the competence of a particular category of people.) When Autistic people face challenges such as difficulty in face-to-face conversations and social limitations such as only 15% of people diagnosed Autistic having full-time jobs at the level of which they are capable of working, autism is undeniably a disability. Arguing against the disability of autism is arguing against a united voice that advocates for the needs of all of us. Arguing against autism as a disability is arguing against our unity.

It is not just unity within and unity with the larger disability community that we are called to support. We need to seek unity with all marginalized people, all people who face oppression. We need to seek unity with People of Color, with people of all genders, especially transgender, non-gender, intersex, and other minority gendered people. We need to seek unity with everyone who suffers discrimination for who they are. It is in this way that we fight against a society that holds up a monolithic notion of “normal” and “perfect” that is oppressive to everyone, but especially to those who fall outside society’s “circle of virtue.”

It is only through seeking unity that we can protect other vulnerable and marginalized people and, in fairness, hope for them to protect us. Many people in our own neurotribe are multiply marginalized, so supporting the rights and needs of impoverished people, People of Color, people of diverse gender expressions and so forth, we are supporting and protecting our own Autistic siblings as well as reaching out to the larger community and working toward a realization of that interconnectedness all humans share. Seeking unity with all people helps build that just and prosperous society Roosevelt dreamed of. Seeking unity makes us all part of the solution, not part of the problem.

It is worth paraphrasing Martin Niemöller’s famous poem about Word War II Germany and persecution under the Nazi regime:

First they oppressed the People of Color
and I did not speak out
because I was white.
Then they oppressed the Transgender People
and I did not speak out
because I identify with the sex I was assigned at birth.
Then they oppressed the Psychiatrically Disabled
and I did not speak out
because I was not diagnosed with a mental illness.
Then they oppressed those Autistics Who Needed Round the Clock Care
and I did not speak out
because I was able to live independently.
Then they came for me
and there was no one left
to speak out for me.

This is our lesson, this is our mission, this is our clarion call: unity.

 

 

 

 

Autistic Pride Day 2015 – Letter to Myself as a Child

Celebrate NeurodiversityI have been wanting to write a letter to myself as a child for a while now and Autistic Pride Day seemed like the perfect day to do it. As I thought about what I would say to myself if I could reach back in time, I realized that there is not one single “me as a child.” So this is a letter to many of my past selves over time.

I have tried to write in ways I would have understood at different ages. If I could only give one message to myself at any age, it would be this, “stop taking the blame for the bad things other people do to you.” I was so hard on myself. Why? Because others were hard on me. How ridiculous is that? Over and over, I punished myself for what other people did to me. So I got punished twice. I want to apologize to myself for making everything even harder than it had to be. And I want to forgive myself, too. I was just trying to survive a difficult life with the “tools” I had.

Dear Sparrow at three-years-old:

You are such a good girl! I love it when you are happy and singing. I see how hard you try to always do the right thing. Always remember that I love you and that you are such a good girl.

Dear Sparrow at seven-years-old:

I am so sorry about how school has turned out for you. I remember when you were four years old and so excited on your birthday because you were finally old enough to go to school. Going to school was almost all you could think about. And then it happened and it didn’t live up to your expectations at all. The teachers are teaching things you already know and the other students don’t treat you well. Sometimes the teacher doesn’t treat you very good, either.

I will tell you a secret: those other students are treating you badly because they don’t understand you and that scares them. I will tell you another secret: don’t tell the other students that you know that! Whenever you know something that helps you put up with how hard life is, don’t share that with the people who are making your life hard because they will just make fun of it and find ways to take that away from you. Knowing that they are treating you mean because they don’t understand and are afraid is like having a secret shield to protect you from feeling as bad when they are mean. Don’t let them know you have that shield.

Sometimes people you trust are telling you that the bullying you are getting is your own fault and that if you could act more like the other kids, they wouldn’t bully you. Don’t believe that it is your fault! It is not your fault that you are being bullied by others; it is their fault that they are bullies! There are things you don’t understand and what do you do? You try to learn more. You don’t turn into a meanie about it. So you know that the other kids could stop being bullies if they wanted to, but they are choosing the lazy way of staying afraid and not learning about you. Isn’t that sad for them? This is your secret shield to help you stay strong when they get mean. Never tell them, but just know inside yourself that they are being mean because they are too lazy to learn a better way to be. It’s okay to feel sorry for them. Feel sorry for them in secret. It’s part of your shield.

Yes, you really are different from the other students. That doesn’t make you wrong. It doesn’t mean you should try to change who you are. There is nothing wrong with being different and hopefully some day those other students will learn that. Right now, I want you to learn it. Being different doesn’t make the bullying your fault. Being different is not “bringing it all on yourself.” And those people who say you “insist on being different” or are trying to “show off” are wrong You are different because you were bon that way. Never be ashamed of being different. Be proud of who you are!

Just pay attention to the things you have control over. Try to be a good person. Try to do your school work as well as you can. And remember your secret shield and stay strong behind it.

Dear Sparrow at twelve-years-old:

Your life is changing so much! Everything is going to be different in middle school. Try to talk to an adult you trust about the things that are hard for you. Tell them how much it hurts to write with a pen or pencil. They ‘know that your handwriting is really bad but they don’t know that it causes you pain to write. You haven’t told them because you didn’t realize that the way writing feels to you is not the way it feels to everybody. Tell them that it hurts. And if they don’t hear you or don’t understand, tell them again. You have a condition called dysgraphia and that’s why you have been having a hard time getting your school work done. If your parents and teachers can understand that you have a handwriting disability, they can get you help. Or maybe they will start letting you type your school work like you’ve been asking to do for so long. They just have to understand that it hurts and they can’t understand until you tell them.

Middle school is going to be harder so you need to get ready for it. You need an IEP plan. You can’t be expected to know what that is, but if you tell your parents and teachers about the things that are hard for you and try to tell as much detail as you can, they can work for you and get a plan in place so that you can get help with the hard things, like handwriting. Tell them how the other students treat you. It’s just going to get harder for you next year, so you need to make sure the adults understand right now what is happening. No adult is with you in every class, every minute, so you have to tell them about the things they weren’t there to see. They don’t know what is happening when they aren’t around.

You have such a bright future waiting for you and an adult life where you will not be stuck all day with people who treat you badly. You will have a life where you can make choices for yourself and the more you are able to get help right now with the things that are hard for you, the brighter your future is going to be. Stay strong. Remember your secret shields. Get trusted adults to help you with the things that are hard.

Love,

Sparrow

There are things I would like to say to myself at fifteen-years-old, but it starts getting too intense and too personal at that point for me to feel ready to share with others. If I were to give enough advice and encouragement to myself before that point, maybe my teen years wouldn’t be so hard anyway. Who knows what my adult years would look like?

At 48 years old, I’ve finally managed to carve out a life that makes me happy. It doesn’t look very much like the American Dream. But it suits me well. If I could send these letters, and so many more, back in time to my younger self, maybe I wouldn’t have had to wait this long to figure out where I fit in this world.

But there is no time machine hidden inside a mailbox. This is my life and I am happy with where I’ve ended up. Would I have wished for other things? Yes. Yes, the life I wanted is so different from the life I have. But I’ve found a happy place in this life and I’m grateful. I can’t really send letters to my younger self, but I can write them. And she’s still here, inside me. She’s reading these letters. She’s healing every day.

 

T is for Toe-walking, Trauma, and Truth-telling

This is an entry for the Blogging from A to Z Challenge. I didn’t quite make it in April. I moved in May. I’m finishing the alphabet in June.

The ABCs of Autism Acceptance series has been picked up by Autonomous Press and will be published in book form, with additional material, in June 2016. Watch for it!

T is for Toe-walking, Trauma, and Truth-telling

This is not quite the grab-bag of topics it might appear at first. There are connections among these three things.

Toe-walking is a very common trait among those with developmental disabilities, particularly autism. While walking around on tip-toes all or most of the time can also indicate other conditions such as cerebral palsy or congenitally tight Achilles tendons, it’s become associated most with autism. All children walk on tip toes sometimes. Most children stop doing it much or at all somewhere between the ages of 2 and 5. Autistic children tend to keep toe-walking a lot. Plenty of adults still toe-walk and I used to be one of them, but I trained myself to stop doing it over the course of the last ten years because I am trying to cope with the physical damage caused by 40 years of toe-walking.

Toe walking has always seemed natural to me. I remember being reprimanded often in my pre-teen years whenever I was seen toe-walking. I honestly tried to stop doing it, but as soon as my attention wandered away from my feet, I’d be right back up on my toes again. I remember my mother taking me to a doctor to discuss the options. He talked about surgery or putting casts on my feet. My mother felt those options were too extreme (and I tend to agree with her) and tried to just help train me not to do it anymore — a task that sounds easier than it actually was, because toe-walking was comfortable for me and so it was a deeply persistent trait.

What I’m about to say may not be popular. I’m not so happy about it myself, to be honest. But many times I see people who support autism acceptance (which, as you know, I deeply support as well!) saying things like, “why do people get so upset about toe-walking? Let people be their Autistic selves!” If you’re talking about hand-flapping, I agree. Lack of eye contact, I’m fine with. Twirling around, jumping up and down, all kinds of stims are totally fine and should not be suppressed. They are part of who an Autistic person is.

But toe-walking is a bit different. I put it more in the category of things like head-banging. Head-banging is not safe. It can lead to permanent brain injury. When someone is banging their head against hard things (and I speak as someone who has done this plenty, myself) it is important to help them find a different way to express their emotions and fill their needs. It is important to find out why they bang their head (are they trying to communicate something? Does their head hurt and they’re trying to relieve or express the pain? Are they frustrated or feeling overwhelmed by emotions and banging their head soothes them?) and try to help the person find a different way, a safer way, to fill the need that head-banging was filling.

Likewise, I have learned that toe-walking up to middle-age is dangerous. My tendons have shortened and I get injured more easily. In fact, I have been nursing a foot injury for well over half a year now. I sleep with foot braces that hold my feet in a position that helps stretch my Achilles tendons. I limp a lot. I am in pain nearly constantly. It is because decades of toe-walking will re-shape your feet in many detrimental ways. Because of those changes and the injuries I’ve sustained, I’m sometimes forced to take a few steps on tip-toe as I “warm up” and stretch out the tendons for flat-footed walking or else I couldn’t walk at all.

So here’s the first connection: toe-walking can cause lasting trauma. But in addition to the physical trauma I have from decades of toe-walking, I also live with the psychological trauma of being repeatedly corrected for toe-walking. It’s a tricky thing. All the times I was told to stop toe-walking made an impression on me and kind of melted in with all the other times I was corrected for all the other things that were either beyond my control or so deeply ingrained that I often felt that I was spending every ounce of my focus on remembering not to do the countless things I was always being told not to do. It was overwhelming!

I don’t have an easy answer to how to help steer an Autistic person without making them feel traumatized by feeling like they are always being told that they are doing everything wrong, but here’s a good place to start: don’t try to “fix” everything. Hand-flapping? Not a problem. Work on educating the rest of the world that hand-flapping is a harmless motion that some people engage in for various reasons. Don’t try to normalize the person; normalize hand-flapping. My boyfriend hand-flaps sometimes in a loving imitation of me when I’m excited. I find it charming. He is not put off by the ways I move and it is a dear way for him to show how “normal” he finds it.

This is one of the problems with therapies that seek to make us “indistinguishable from our peers.” If you try to stop us from doing anything that looks Autistic, you will be constantly picking at us to stop almost everything we do and we will feel overwhelmed and traumatized. So pick your battles. Hand-flapping is fine. Focus on things like not hitting siblings, keeping body waste inside diapers or toilets, not biting others, not banging one’s head against hard things . . . and toe-walking. Don’t worry about it at a pre-school age. Every pre-schooler toe-walks some amount, often a lot. But gradually work on flat-footed walking. If your child is receptive to verbal reasoning, explain to them what will happen if they spend too much time on tip-toes. It’s not too different from what happens to women who wear very high heels a lot (although it can be more damaging. Imagine if women started wearing high heels every single day at, oh, age seven or so, when their feet are still forming and growing), so it shouldn’t be too hard to find some information and other first-hand accounts of the long-term damage toe-walking over the course of many years can cause.

Already you see the connections: toe-walking is a body-truth and trauma can be caused both by decades of toe-walking and by trying to correct toe-walking too vehemently (especially while trying to “correct” everything else, most of which does not need correcting.)

Trauma is a big deal for autism acceptance. I believe that many of us Autistics are more easily traumatized by some things than other people are. I also think that many of us Autistics have had to endure things that are more traumatizing than a childhood (or adulthood) ought to be. And I think trauma often puts us at odds with ourselves when it comes to truth-telling.

There is a myth that Autistics are incapable of lying. It’s wrong. We can lie. Many of us aren’t very good at it. I hate lying for several reasons but one of the biggest reasons I hate it is because I’m just so darned bad at it. It’s stressful to try to keep up with a lie. It’s stressful to get caught out when lying. It’s stressful to feel bad because I’d rather not be lying. Chavisory commented on my blog that one reason she loves the story of Donald Triplett, the first person diagnosed with autism, telling others how many bricks were in the façade of a building is because he admitted later in an Atlantic Monthly article that he had lied and made up the number. She loves how that busts the stereotype of Autistics as being incapable of lying. Triplett knew that the people asking wouldn’t check to see if he was right and because they were so interested in seeing if he knew (and he was so eager to win their admiration) he lied and made up a number. And got away with it. Autistics can lie. We are more likely to tell the truth, even if it’s an uncomfortable or angering truth. But we can lie.

Trauma can rob us of the choice to tell the truth. For example, if we are traumatized enough about a particular aspect of our behavior, we may resort to lying in order to avoid getting reprimanded yet again. But, for many of us, lying is traumatizing in itself. So trauma can re-traumatize again and again by forcing us to lie. Truth-telling and trauma are linked. If you always get shouted at or even hit for doing something that you can’t help doing, you start to get sneaky and learn ways to hide it. Or lie about it. And pretty soon, you start feeling like your whole life is a lie and all you are doing is trying to maneuver around the trauma spots and not get caught. This is not just Autistics. Anyone forced to live a lie can come to feel traumatized by the constant requirement of pretense. It doesn’t matter if it’s a gay teen trying to hide their identity from judgmental parents who might kick them out of the house, or a Black person who has to be constantly aware of how they move, look, speak, walk, and so on in order to not be accused of shoplifting or worse, or an Autistic struggling to not flap their hands, pretend to maintain eye contact (but not too much eye contact!), and speak in ways that other people expect them to. Living a lie is stressful and traumatizing.

Encourage the Autistic people in your life to be truth-tellers — not by threatening punishment if they lie, but rather by setting up an environment where it is okay to be who they really are and where even dangerous actions like toe-walking and head-banging are met first with an attempt to understand why they need those actions, then by helping to find alternatives and lovingly mentoring the Autistic to be the best, safest, healthiest, most free, and truest Autistic they can be.  Recognize how easy it is to traumatize someone by outlawing everything that is natural to them and don’t compound trauma by pushing them so hard to be someone they aren’t that they are forced to lie about things, especially things that are so much a part of who they naturally are.

Autism acceptance means helping, mentoring, guiding, but never trying to re-shape an Autistic person for no good reason beyond the comfort of others. If you accept Autistic people, you will accept that we often move differently, communicate differently, and think differently. Autism acceptance does not mean just letting us “go wild.” We need mentoring just like anyone else. Autism acceptance means working to understand why we do things and carefully judging before you try to change our behavior: do you want to change it to help us be healthier and happier? Or do you want to change it because you think other people will not accept us the way we are?

If you think people will not accept us because we look, think, and communicate differently, do not  try to make us into people we aren’t. If you think we will not be accepted, you must work to change the world into one that can accept people regardless of neurology, color of skin, religion, or any other of the myriad things that contribute to the glorious diversity of human beings.

Do not traumatize us in the name of helping us fit in.

Do not try to make us smaller; work to make the world’s heart bigger.

S is for Stop Saying Savant Syndrome and Splinter Skills

SThis is an entry for the Blogging from A to Z Challenge. I didn’t quite make it in April. I moved in May. I’m finishing the alphabet in June.

Great news! The ABCs of Autism Acceptance series has been picked up by Autonomous Press and will be published in book form, with additional material, in June 2016! Watch for it!

S is for Stop Saying Savant Syndrome and Splinter Skills

When you see an Autistic person who is very talented at something, are you tempted to call them a savant? Don’t. I realize you mean to compliment them but the word is loaded and ableist. You may already realize that talking about splinter skills is ableist (or, if you aren’t deeply involved in the medical aspects of autism, you might not be familiar with the term.)  I’m going to unpack them both, showing why these are words you should never use to describe people’s abilities. Let’s start with “savant.”

Joseph Straus, a professor at CUNY, examines the history of the term “savant” in a paper published in Disability Studies Quarterly. As Straus points out, the original term was “idiot savant” and it was generally applied to people who were intellectually disabled yet could perform in one area brilliantly. Sometimes that area was math, sometimes music, sometimes art. The point of the label was to highlight the juxtaposition of “extreme incompetence” and “extreme competence.” Not only were the term and the ideas behind it offensive and ableist, it was a way of stating what society finds valuable or worthless about a person. The brilliant musicianship, for example, was valuable because people liked to hear the music and would pay money to listen. The “idiot” nature of the rest of the person’s life was considered worthless.

As Strauss points out, the idea of the “autistic savant” is fairly new and can largely be attributed to the popularity of the Dustin Hoffman and Tom Cruise film, Rain Man, in which  Hoffman plays Raymond Babbitt, an Autistic adult. Hoffman’s character was modelled after two people – Kim Peek, a non-autistic “savant”, and William Sackter, a non-autistic man with a learning disability who was institutionalized (the state said he would be a “burden on society” otherwise) in the Faribault State School for the Feeble-Minded and Epileptic after his father died of Spanish Flu. Sackter, who was portrayed by actor Mickey Rooney in a film about his life, Bill, was tested after 44 years of institutionalization, and found to have an I.Q. in the normal range. He had been a victim of the over-institutionalization of “problem people” that was rampant in the 1920s.

Bear in mind, the largest outrage is not that Sackter was not actually “feeble-minded.” The largest outrage is that anyone was locked away in such a state school. People who complain of over-diagnosis of children today are forgetting that so many of today’s mainstreamed children with IEPs and classroom aides would have been invisible behind the walls of an institution in the past. Chances are, Sackter had something like dyslexia or ADHD. Do not mourn alleged overdiagnosis; rejoice at de-institutionalization.

Hoffman’s portrayal of autism, modelled after two non-autistic people, set the tone for decades. Public understanding of what autism looks like has, until recently, largely been centered around Hoffman’s portrayal. The “Rain Man” concept of adult autism still lingers, though it has largely been replaced with a blend of Temple Grandin and the fictional character Sheldon Cooper from television’s Big Bang Theory. Raymond Babbitt was institutionalized, exhibited repetitive speech, needed supervision and assistance, and could count things at a very high level. In one scene, a server in a restaurant drops a box of toothpicks on the floor and Raymond instantly counts them. At first, his count is believed to be in error but when the server reveals that 4 toothpicks were left in the box, everyone is amazed. As you can see in the clip, Raymond has also memorized the phone book, halfway through the Gs, after his brother, Charlie, gave it to him in frustration, telling him “here, read this!”

Charlie notices Raymond’s impressive memory and counting skills and teaches him to illegally count cards so that he can take him to Vegas and win lots of money. Charlie doesn’t really like Raymond. He is frustrated with Raymond’s echolalia, with his need for structure in little things like what brand of underwear he wears or whether the maple syrup is on the table before or after the pancakes. But Charlie does value Raymond’s ability to count and remember because it can be monetized.

And this is where the notion of an “autistic savant” is dehumanizing. Have you ever heard someone called a savant because they collect bus transfers (as I used to do in my early teen years) and know every detail about the transfers and the use of them? Or what about someone who has memorized every detail of every episode of Dr. Who, all the way back to 1963? No, I’m pretty sure you’ve never heard those folks called savants and there’s a reason. “Savant” is code for “can do something society finds useful.” That’s why people called savants do things like make music or art or count fast, memorize well, calculate very large numbers accurately and so on.

To say that someone is a savant is to say several things:

  • that they are incompetent in every area of their life except one
  • that they have value that is contingent on their heightened skill in that one area
  • that others who are judged incompetent and do not have a “savant” skill are not valuable
  • that this person is a “freak,” a social outsider, an Other

When someone can do a thing that you find amazing, do not discount their competence in other areas of life. They may need guidance or assistance from friends and other helpers. That does not mean that they are incompetent. If you value their ability to multiply five digit numbers in their head and devalue the rest of their life because they are unable to work or because they need accommodations or assistance, you are setting yourself up to miss the very real humanity and joy of knowing that person. You are commodifying their mathematical abilities and dismissing their personhood. You are reducing them to a biological adding machine.

People have inherent value and should not be valued solely on whether they are “useful” or not. Nazi Germany called disabled people “Nutlos Esser” (useless eaters) and said they lived a “ballast existence,” holding the rest of the country back with their needs for extra care and their lack of useful productivity. As a result, disabled people were the first to die. The Aktion T4 program was a trial run for the larger exterminations of Jews, Romany, Homosexuals, Polish, etc. This is what happens to disabled people who are valued only for what they can produce.

You may be tempted to invoke Godwin’s Law and say I am going too far in speaking of Nazi death camps when I talk about why the term “savant” is dangerous. Don’t forget that the Nazis did not invent eugenics — it was an American export. Don’t forget that disabled women and women of color were being involuntarily sterilized in the United States  as recently as the 1970s. Don’t forget that Kissinger’s National Security Study Memorandum 200, written in 1974, described “overpopulation” in less developed countries as a security threat, saying that U.S. policy should include, “pay[ing] women in the LDCs to have abortions as a method of family planning or to pay persons to perform abortions or to solicit persons to undergo abortions.” In other words, “soft” genocide of poor, non-white people. Poor women all over the world, including in the United States, are offered money to be sterilized. I was offered $300 to be sterilized in 1991, solely because I was on food stamps. I turned the offer down.

This is a world where the poor are blamed and punished for their poverty. Politicians campaign on a platform of taking food stamps away from “those who refuse to work,” despite the fact that at least 40% of food stamp households do have at least one working member and 75% of food stamp households have children. Sixteen percent of food stamp households include a disabled person and 9% include seniors. [source]

If this doesn’t help clarify why it is dangerous to predicate people’s value on their usefulness, I don’t know what else to say.

Promoting the idea of the autistic savant harms Autistic people. I know someone who endured a person throwing toothpicks at their feet and asking them how many there were. Seriously. The idea that some Autistics are “savants” impairs many people’s ability to see us as human beings. Yes many of us are really, really good at some things. That is not because Autistics are savants but rather because the Autistic mind latches on to things it loves and savors them thoroughly. Some Autistics love animals. Some love Thomas the Tank Engine. Some love industrial deep fryers. Some love the work of Neil Gaimon. Some love languages. Some love flags. It’s okay. It’s not “savant syndrome.” It’s people who are hard-wired to really get into the things they love. Focusing on the things we love gives us immense joy. If you have never gotten really deeply into something, so far that you were eating, breathing, and dreaming about it, you will not understand this joy. You don’t have to be Autistic to experience it, but it helps.

“It’s that the experience is so rich. It’s textured, vibrant, and layered. It exudes joy. It is a hug machine for my brain. It makes my heart pump faster and my mouth twitch back into a smile every few minutes. I feel like I’m sparkling. Every inch of me is totally engaged in and powered up by the obsession. Things are clear.

“It is beautiful. It is perfect.”

Julia Bascom

This is not a separate competence in a desert of incompetence. This is an Autistic way of being. It is whole and to call it “savant syndrome” is to cut us into little pieces so you can say that you approve of this piece but that piece has just got to go.

And that is exactly what the phrase “splinter skills” does. It cuts us into little pieces, into splinters. It says “this part of you is good but those parts of you are bad.” It splinters us into fragments of worth and worthlessness. It declares us incomplete people, less than fully human, splintered.

How would you like it if your ability to bake amazing brownies were called a splinter skill — you are judged incompetent, except when it comes to brownies. You can solve partial differential equations? Great splinter skill. Too bad you don’t know how to change the oil in your car or you would be a real person.

Ariane, the mother of Emma, a fabulously Autistic young woman, writes, “If we did the same thing to those who are born without Autism, if we talked about our non-Autistic neurology as a deficit and identified all the ways in which it would cause us problems and difficulty, would we not despair when our non-autistic child was born as well?  Take your own life as an example and imagine that when you were born you were seen as a great disappointment.  Think about how each time you did something well it was dismissed as a “splinter skill” and was seen as yet another example of all that was “wrong” with you.”

Mayer Shevin, who just passed away last year, wrote an iconic poem, The Language of Us/Them. In it, he writes, “We have talents /  They have splinter skills,” highlighting how differently ability is viewed among the Autistic compared to the general population.

And if you were wondering how you should refer to Autistic people with talent, now that you know that “savant” and “splinter” are unacceptable words, there it is. We have talents. We have abilities. Speak of our skills as skills, not as freakish anomalies. Discuss what we can do the way you would discuss what any other human being can do. Whether it is Roadrunner cartoons or astrophysics, call it a talent, a skill, an aptitude. And celebrate it, whether it is a marketable skill or not. Because these are the things that bring the most joy into our lives.

To discover what an Autistic loves, listen to what we know.

To value an Autistic person, value who we are, not who we could be or what we could make of ourselves.

It really is that simple. Be with us as we are. Know us without agenda and value us without a price tag.

If you do this, you will surely come to love us.

 

 

 

R is for Relationships

RThis is an entry for the Blogging from A to Z Challenge. I didn’t quite make it in April. I moved in May. I’m finishing the alphabet in June.

R is for Relationships

This is such a huge topic, it would take an entire book to do it justice, but there are some very important highlights I need to hit when speaking of autism acceptance and relationships.

One of the questions parents of Autistic children ask most is “will my child ever be able to have a relationship?” In darker moments, its not even a question but rather a lament. “My poor, poor child! Autism has robbed them! They will never marry or have children!”

But what parents often don’t realize is that they’re not quite asking the right question. Too often, books about sex and relationship for parents of Autistics and for Autistic people ourselves make a basket of assumptions that can be very harmful to all developing young people but especially to young Autistic people who so often need extra mentorship and guidance in life.

Double Rainbow, a column of autism and sexuality, written by Caroline Narby and hosted by Bitch Media has addressed these assumptions multiple times.  Narby writes, “The aim of this blog is to explore and interrogate popular representations of autistic sexuality and gender performance from a queer, autistic perspective” and goes on to say (speaking of a presentation in which autistic sexuality was presented as only being acceptable if it is mainstream with respect to gender and sexuality), “There must have been young adults who are gay and/or genderqueer or trans*, or who are unsure of and are exploring their identities. The message they received was not that they are not alone and are worthy of love, but that they are undesirable. I know from first-hand experience that autistic youth are often already emotionally vulnerable. To be told that you are doubly broken, doubly unlovable and undesirable, because you are both autistic and queer, is devastating.”

This is the big mistake I see so often in sex education targeted to Autistic people or our parents. The assumption is that everyone is heterosexual, everyone presents as the gender that matches the sex organs they were born with, and everyone wants to be in a sexual and romantic relationship. (Or, sometimes, the erasure goes the other way and the book or speaker seems to believe that all Autistic people are completely asexual and aromantic.) These kinds of stereotyped assumptions (that we’re all cis-het (in other words, not trans and not queer) or all asexual) are very damaging to anyone who is taking those first steps into the world of adult relationships.

In my own case, I had the standard sex education that assumes everyone is cis-het (I was in middle and high school in the late 1970s and early 1980s) and I felt frightened and ashamed to try to talk to someone about the thoughts and feelings I had that were not part of that model. When I finally found an adult I could talk to (a local co-ordinator for PFLAG (Parents and Friends of Lesbians and Gays)), she was wonderfully helpful, but made the assumption that I was a lesbian. Since no one told me about non-binary gender and sexuality, I accepted what she wrote to me (I was too shy to call so I wrote a letter to her) and worked hard to fit in with my lesbian identity, unaware that there were other ways of being a sexual person.

As it turns out, I am pansexual. If you don’t know what that word means, think of bisexual — a concept you’re probably at least somewhat familiar with — and now think about what bisexuality looks like when there are more than two genders to choose from. Since I now understand that gender is not strictly a binary (there are cis-females, cis-males, trans-women, trans-men, intersex folks, genderqueer folks, third gender folks, and all kinds of other flavors I don’t have time or space to go into here) I can’t really call myself bisexual because that word implies that there are only two choices. There is a saying that, “a bisexual person sees a lovely woman across the bar, walks up and finds out they are actually a lovely man, and it’s okay.” I like to say that a pansexual person sees a hot person across the bar and maybe they are a man and maybe they are a woman and maybe they are something else entirely but it doesn’t matter, because they are lovely.

Because I am often quite literal-minded and because I accepted that the adults around me knew the truth and could teach it to me, my struggle to be “a good lesbian” was just as difficult and shame-inducing as my struggle to be “a good straight girl.” Neither one was working for me and I didn’t understand why for a long time. Of course this can happen to anyone, Autistic or not, but we are extra-vulnerable to these sorts of difficulties in understanding our identity. We need an atmosphere of openness when we are making those first steps of self-discovery.

Now . . . I realize that I’m talking about things that are complex and sometimes subtle — from the perspective of people who aren’t Autistic. It can be intimidating to try to figure out how to introduce all this complexity when you’re terrified just to talk about sex at all with your Autistic child. Or maybe you are nervous because right now you’re working on helping your child learn that touching their genitals is something they can’t do in the grocery store. Or at church. Take a breath and remember the joke: “how do you eat an elephant?” “one bite at a time.” Deal with whatever you and your child are dealing with right at this moment. But try to work on opening up your language and your mind to the thought that your child might be gay. Or bisexual. Or pansexual. Or asexual. Or transgendered. Or . . .

Let your child set the cues as far as gendered clothing. I see a lot of sex advice for Autistic young women that tries to convince us to put on make up or shave our legs or wear a dress instead of jeans and a sweatshirt. Some of us like to do those things. Some of us LOVE to do those things. And some of the Autistics who love to shave their legs and wear a dress and make up were born into a body with a penis. Focus on good grooming and let your child teach you what their sense of fashion is. Don’t try to force an Autistic young person to dress a particular way. We often learn — either through difficult therapies or just through living a life where too often we are told how wrong we are — to be extra-compliant and that can extend to trying to please others by dressing, speaking, and behaving in a way that feels completely unnatural to us. So often, we grow up feeling we have no choice but to comply and conform. Be aware of this and try not to unconsciously (or consciously!) force your child into a sex and gender mold that is not a good fit for them.

And all that “my child will never get married and have children” angst?  I can understand why that upsets you, but you need to work on privately getting past that. Talk to your partner, if you have any, about those fears. Talk to a therapist or a close friend. Don’t write it in any place, public or private, that your child is likely to see some day. (And don’t think that just because your child doesn’t speak or interact with others right now that they will never read and understand things. You can’t guess your child’s life trajectory and you might come to learn that every thing you said in front of them, thinking they didn’t understand, went straight into their memory.) Because what if your child grows up to be an asexual adult? Or a childfree-by-choice adult? How will your child feel about your misery over the thought that they will never marry or have children if it turns out that they really don’t want to marry or have children? Do you think your child will feel accepted for who they truly are?

Everyone raising children needs to learn about different forms of sexual expression (or non-expression by choice.)  Did you know that someone can be asexual but not aromantic? Some people who are asexual still want a loving and emotionally bonded relationship. Some do not. Some people fall in love with more than one person at the same time and choose to have relationships that are honest and open and not monogamous. It is important for every parent to learn about sex, gender, relationships, and love so that they are prepared to support their beloved child no matter what road of life that child grows up to travel. If you believe in autism acceptance, along with neurodiversity, you need to accept sexuality and gender diversity. Autistic people end up non-cis and/or non-het at the same rate as the general population . . . possibly more often. Just as autism is a core piece of who we are, sexuality and gender are deep and pervasive. To accept one and not the other is just as damaging as accepting neither.

 

 

Q is for Quiet Hands Getting Loud

QThis 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. (Edited to add – I didn’t quite make it in April. I moved in May. I’m finishing the alphabet in June.)

Q is for Quiet Hands Getting Loud

Quiet Hands. If you’re Autistic, you are probably familiar with the phrase. It’s the admonition to stop fidgeting, stop flapping, stop moving, stop what’s called “stimming” — short for “self-stimulatory behaviors.”

But “quiet hands” is not autism acceptance. It is part of the goal of so many autism therapies: to make an Autistic person “indistinguishable from their peers.” People who try to accomplish this with Autistic people believe they’re doing them a favor because they think that if we can just figure out how to look at act like everyone else around us who isn’t Autistic, we will be “cured” and be able to have the same kind of “normal life” that other people have.

But when I look around at myself and my fellow adults Autistics and hear their stories, it seems to me that this “indistinguishable from peers” goal is one that only a tiny fraction of Autistic people are able to accomplish. Beyond the relative unattainability of “indistinguishable,” the stress of trying to reach that goal can do long-term damage to a person’s body and to their self-esteem.

The dirty truth about “quiet hands” and other attempts to train the autism out of us is that these sorts of therapies — teaching us to look others in the eye, stop fidgeting, stop rocking, stop doing anything that “looks too autistic” — is that these therapies are not really meant to help us. They are meant to make others feel more comfortable around us and to allow others to try to forget that we are Autistic.

Teaching us that we need to stop looking “too autistic” if we want to be treated with dignity and have a happy and productive life teaches us that who we are is wrong and ugly and unacceptable. And if we don’t succeed in looking “normal enough” we have been taught to try to hide our autism, so our boss, co-workers, classmates, etc. don’t understand why we are unusual. We are more likely to be bullied, shunned, and fired from our jobs if people don’t realize that there is nothing “weird” or wrong about us; we’re just Autistic. People are more likely to be willing to work alongside someone they know is Autistic than someone who is just “nebulously weird.” I lost jobs for being too strange, creepy, etc. when it wasn’t known that I am Autistic. Trying to teach Autistic people that the only route to success is to learn to fake being someone they aren’t is setting most of them up for failure.

And the stress is long-lasting and can lead to health and functioning difficulties down the road. An excellent essay by Mel Baggs talks about the breaking point that people can face later in life after too many years of struggling through the stress and difficulty of “faking normal.” In the section on burnout, Mel explains very clearly how years of “faking normal” can lead to a breakdown:

Burnout, long-term shutdown, or whatever you want to call it, happens generally when you have been doing much more than you should be doing. Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival, can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.

With some diseases with long-term effects (and I am not suggesting that autism is a disease), it is the people who tried to ignore the long-term effects and “act normal” who often burn out, probably because they are drawing on emergency reserves to do so. There is a high chance that autistic people who attempt to ignore the fact that they are autistic and act like non-autistic people are subject to the same kind of burnout, or even autistic people who push themselves too hard in general without trying to look normal.

The danger here may be obvious: It may be the people most capable of passing for normal, the most obvious “success stories” in the eyes of non-autistic people (some of whom became so adept at passing that they were never considered autistic in the first place), who are the most likely to burn out the hardest and suddenly need to either act in very conspicuously autistic ways or die.

If that sounds overly dramatic to you, it means that you still don’t get it. You still don’t really understand what it means to have a whole industry of therapy centered around making people do and say pointless and unnatural things so that they can look and sound like everyone else. Is there something about you that is different? Would you appreciate being told that you should spend your life dying your hair to hide the beautiful ginger shade you were born with? Have you ever recoiled in horror after learning that right handedness was so valued that left-handed children used to suffer having the bones in their hand broken so that they had no choice but to become right handed? Surely there’s something about you that you have been pressured to hide and change? Dig into those memories to connect with what it means to be told that you were born wrong and need to spend the rest of your life pretending it wasn’t so.

Teaching Quiet Hands isn’t harmless. It teaches us that we are mistakes. It silences a big part of our voice. It seeks to shape our bodies in the image of some unrealistic ideal. And, for many of us, it reduces our ability to function.

I am a big fan of RPM, facilitated communication, typing or pointing at a letter board to communicate. I love to read the words of those who communicate with their hands. And one thing I have noticed many of those folks saying is that they can only communicate if they are allowed time to stim in between typing. Some flap their hands. Some twirl things like a special string. Some drop to the floor and roll back and forth. These kinds of motions — these very beautiful Autistic motions — help us to stay centered, to stay focused, to regulate huge emotions, to give needed input to nervous systems that do not function in the same way as most people around us.

When you force Autistic people to stop moving in the ways our bodies are made to move, you take away more than the appearances that are so uncomfortable for you to see. You very often clip our wings. You take away our ability to self-regulate. You might complain that we scream or cry too much but haven’t noticed that we scream and cry less when we are allowed to live our truth on all levels. You may complain about how we complete a task — or how we are unable to complete a task — but you haven’t noticed that we can do many things much better when we are able to do them in the ways that feel natural to us and when we are allowed to take those small breaks to do the things that make us feel better and more connected. We make sounds. We make faces. We move our loud hands. We move our bodies. We spin in circles, roll on the floor, sigh, stretch, wave our arms, fidget with jewelry. Whatever it is that we do, we don’t do it to annoy you. In some cases we can stop doing those things but the cost is too high for you to justify asking us to stop.

Our quiet hands get loud and if you believe in autism acceptance you need to embrace our loud hands and understand why it is that our bodies need to sing.

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