M is for Murder

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

M is for Murder

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We need to build a world of autism acceptance.

L is for Love

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

L is for Love

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

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

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

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

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

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

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

Do not doubt it. We do love!

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

J is for Joke

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

J is for Joke.

 

 

I am not a joke.

 

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

 

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

 

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

 

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

 

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

 

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

 

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

I is for Identity-first Language

The Letter IThis 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.

I is for Identity-first Language

I know of several groups of people out there who want to be referred to by what’s called person-first language. For example, “people with narcolepsy” is so common that it has a well-known abbreviation: PWN. I have watched discussions in diabetes forums in which people either don’t care what they are called or insist very strongly that they should be called “people with diabetes'”  and never “diabetics.”

People who feel strongly about person-first language tend to explain their stance by saying that they don’t want to be identified with their disease. The disease is difficult and challenging and they don’t feel like it is a part of who they are, but rather a tacked-on difficulty they cope with. It doesn’t describe them, it doesn’t define them, and they would be the same person with or without the condition — it is a surface-level layer that could be peeled away without removing anything significant about the person underneath.

And not only do I respect those groups’ choice of person-first language, but I agree with them. I don’t have narcolepsy but I have another serious sleep-related disability (hypernychthemeral syndrome a.k.a. Non-24) and while it doesn’t bother me at all if someone refers to me as “an N24″ rather than “a person with N24″ it is not a deep-rooted part of who I am. If a miracle cure could remove my N24, I would be the same person I was before, just with a much healthier sleep pattern. It’s not a part of who I am.

But autism is different. Autism is a pervasive developmental disability — it is pervasive, it pervades every part of my being. Autism is not a layer over top of a non-autistic person. Autism is a word to describe a different type of brain, with different wiring. Autism is a brain that is different in both structure and function. And as an amateur neurobiologist, I believe that my brain is who I am. Someone else might have religious views and say that their soul is who they are, but even they will likely admit that the material vehicle of that soul is seated in the brain. The brain is where thoughts come from. It is where the control panel is for the excretion of the biological chemicals that cause emotions to be experienced. When we see, hear, smell, feel, taste, it is our brain that tells us what we are sensing. Every part of the body comes back to the brain.

So I cannot be separated from my autism. I’ve met people in the diabetes community who hate the phrase “my diabetes” and refuse to use it because they don’t want to claim the disease as theirs but rather view it as an unwanted invader in their body. If I tried to say that about MY autism, I would be calling my own brain a foreign body that I want to eject. That sounds like the basis for a horror movie to me. It is MY brain! It has MY thoughts and MY feelings in it. It is filled with MY memories. I need MY brain. And MY brain is an autistic brain. It is MY autism. Mine.

So to call me a “person with autism” is, at best, disturbing to me. I strive to temper my reaction because I know that people have good intentions. But the good intentions do not make an offensive statement innocuous. It is still offensive to me when people say things like “fight autism” (you want to fight my brain? Why do you hate me?) or call me a “person with autism” (why not call me a “person with a brain”?  To me it is the same thing.)

One of the hallmarks of person-first language, as you may have noticed from the examples I used, is that it is a way to separate a person from something that is considered unworthy, unwanted, ugly, or undesirable. Narcolepsy is a difficult and challenging condition and the only positive I’ve noticed about it is the way it brings people together in a loving community that cares for one another. (I really do love the narcolepsy community! PWN are among my very best friends!) Diabetes is a similar case – there is nothing good about having a malfunctioning pancreas or metabolism and it makes sense to want to use language that separates that dysfunction from one’s core identity.

But autism is not the same. It brings both challenges and rewards. My sensory challenges make the world a very painful place to live in, but they also bring an exquisite sensitivity that causes music to bring me to tears of ecstasy. I process spoken words more slowly than people around me but I process numbers and symbolic logic much more quickly. I have a hard time figuring out what emotions people are speaking with their face, tone of voice, body positioning but I develop strong and deep and loyal bonds to other people. I have difficulty regulating many of my body functions such as heat and cold or being overwhelmed by too much motion, light, sounds, etc. but I have access to a deep, deep, deep joy by manipulating movement, light, sounds, etc. on my own.

Note that those are my personal pattern of weaknesses and strengths. Each Autistic person has their own balance sheet of challenges and joys — they don’t all look just like mine. But this is the thing: we each have challenges and strengths. Autism isn’t all negative. It isn’t all challenge. And because autism is about the entire brain and how it is wired (as well as genetic factors and co-morbid conditions that we have a greater chance of manifesting — my sleep disorder being one of those conditions) it is not a thing that can be peeled away from us. If it were possible to re-wire our brains and re-code our genetics, the challenges might be removed but the delights would go along with them. We would lose the disabling parts of autism but we would lose the joy of autism along with them. It’s all tangled together into one big crazy quilt of identity — it is all a significant and rooted part of who we are. Without autism, we would not be who we are.

And this is why so many of us (although not everyone) ask that identity-first language be used to refer to us. That is why you meet so many Autistic adults and teens and children who ask to be called “Autistic,” not “people with autism.” Because it really is a part of our identity, every bit as much as (or more than!) our gender, our nationality, our hair and eye color, our career if we have one, our major at school if we attend. It is as deeply rooted a part of our identity as being a human being. It is simply who we are.

And some of us also choose to capitalize the A in Autistic as a statement of identity as well. Lydia Brown sums it up well when zie says, “I capitalize the word “Autistic” as if it were a proper adjective, for the same reason the Deaf and Blind communities capitalize the respective adjectives “Deaf” and “Blind.” We do it for the same reason Black people often capitalize that word. We capitalize it as a proper adjective or noun to represent our community and our identity.”

Please think about what I have written here the next time you are tempted to say that you love your child but hate autism. Will your child hear the difference? So many of us are hurt by those kinds of statements. Don’t set your child up to hate who she is at her very core. Think about the language you use.

I will leave you with an essay by Jim Sinclair that is currently over 15 years old and is a vital piece of our community’s treasured and living history: Why I Dislike Person-First Language.

 

 

H is for Healthcare Access

HThis 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.

H is for Healthcare Access

Healthcare access is a big topic today, thanks to the Affordable Care Act (ACA). I see people commenting often, either grateful for ACA and their newfound healthcare access or angry about ACA and their extra costs or lost access. What often gets lost in the shuffle are those groups that did not have good healthcare access before the ACA and have not been significantly helped by the passing of ACA.

Autistic people have struggled to get our health needs met for a long time and will be struggling with our healthcare access for some time to come. In the wake of the passage of ACA, our voices are often drowned out by the voices of those who say we need 40 hours per week of ABA therapy. All the attention when it comes to our healthcare gets focused on ABA (Google “autistic health care” or “autism ACA” to see what I mean)  and our genuine medical needs too often get swept under the rug. Too many of our basic health care needs are not getting met and some aspects of autism make our difficulty accessing health care “invisible” in the public discussions.

As I see it, there are three main reasons why we are such an underserved population: bias against the value of Autistic lives, communication issues, healthcare provider ignorance. And the three solutions are acceptance, accommodation, and awareness/education.

I think most people reading this don’t need to be convinced that Autistic lives have value. But, just in case, I’ll say this: we are human beings. We have thoughts, feelings, desires. We want to be healthy and live long, full lives (even if our life-well-lived doesn’t always look the same as your life-well-lived.) We deserve the same respect, dignity, and chance in life as anyone else.

Doctors don’t always feel that way, though. One example is the case of Mel Baggs who had to fight in 2013 to get a GJ tube — without the tube, Mel would die. And the doctors knew that. And they were trying to encourage Mel to just go home and die. Mel’s case because known on the internet and people from all over the place called the hospital to protest . . . and Mel got the tube and is alive today.

Mel wrote, “But I had to fight for this tube. Even though it was the only way to save my life. I had to fight against people who were certain I was better off dead. And I needed the help of a lot of people on the Internet, to do it. When I did get the tube, it was done without a working anesthetic. And even though the local anesthesia didn’t work on me, even though I was yelling and screaming, they didn’t stop to give me more, they just kept telling me that the Versed meant I wouldn’t remember it later. Yeah right.” – Mel Baggs, Feeding tubes and weird ideas

(More on failed attempts to provide appropriate anesthesia to Autistics in a bit.)

Another example is 23-year-old Autistic Paul Corby who was refused a heart transplant. Paul was in great health except for the left ventricular noncompaction in his heart. There is a long waiting list for hearts – several hundred people die every year while waiting for a heart. But Paul was young, otherwise healthy, and a great candidate for a transplant . . . if only he didn’t have autism. His life was valued so much less than the lives of others that he was not even allowed on the waiting list.

Three years later, Paul is still trying to get on a waiting list for a heart. In the meantime, he has written three novels for young adults. Paul just wants to live, to be able to walk up a few steps without losing his breath and becoming exhausted, to continue to write and play video games and to watch his nephews grow up. His petition nearly has 300,000 signers but still he is not allowed on a waiting list.

These and so many other cases are prime examples of why we need increased autism acceptance. It is wrong for doctors to decide that it is better for someone to die because they have a developmental disability. Yes, there are risks with a feeding tube. Yes, there is a long waiting list for heart transplants. But Mel was willing to take those risks and Paul deserves to be on that list. Transplant lists have triage codes to govern the speed with which people move up the list and it is wrong to not allow Paul on the list at all when he could have at least been sitting on a slow track for the last three years.

Communication issues are another serious barrier to getting healthcare needs met. In the case of non-speaking Autistics, communication issues often revert to barrier of human value — those who do not speak are, quite unfairly, valued less by many people than those who do speak. But those of us who speak are often confronted with communication barriers as well.

Communication barriers include things like rushed appointments in which we are not given sufficient time to process language or in which we are “punished” for “waiting so long to bring that up” when we had been struggling for the whole visit to get the important words out. Communication barriers include things like not being able to focus because of fluorescent lights or not being able to hear the doctor’s words because of clanging medical equipment. We can’t communicate symptoms well if our doctors ask the wrong questions and we have sensory wiring that doesn’t always allow us to know where our pain is or even that we do have pain. Sometimes doctors rush through instructions that are only given orally with no room for processing or remembering the information and no written record to help us recall what we were told. This is usually followed up with, “any questions?”‘ and an overwhelmed and overstimulated Autistic often just says, “no,” because there is not the time and mental space to process everything and make the question words. Communication barriers can be invisible to doctors because we are so compliant that we say everything is good when it isn’t or because we come across as so intelligent that it seems impossible that we could also have significant deficits. Communication barriers can even be invisible to ourselves if we are so overwhelmed that we aren’t even able to know what we don’t know.

Accommodations are the best answer to these sorts of barriers. One accommodation I use is a little digital voice recorder. I ask permission to record the consultation, saying, “my memory is like a sieve. This is just so I will remember what we talked about, okay?” I have not yet had a doctor refuse to allow me to record our visit. Later, I transcribe the recording into a text document because written language is so much easier for me to process than spoken language. I add the transcript to my personal medical file and I can quickly and easily see how long I was supposed to soak a body part for or what I was supposed to eat or not eat with those pills, etc. I also try to come into an appointment with printed out notes or a bullet list whenever possible. Some doctors seem put off by my bringing notes, but it is the only way I can be sure that my needs will be met in such an overwhelming environment.

Cynthia Kim has written a great essay outlining some of the accommodations that will help Autistic people get better access to health care. Many of her points spill over into my third topic: educating healthcare providers about the ways that Autistic people are unusual in a medical setting.

I already mentioned one of those: our unusual responses to pain. Our nervous systems do not respond the way the nervous systems of allistic (non-autistic) people respond. Sometimes a tiny splinter or a gentle bump causes unbearable pain. Sometimes a broken bone doesn’t even register with us. We are both hypersensitive and hyposensitive to pain and one person can be both hyper-and hypo-sensitive, depending on the setting, the injury, what else we are currently coping with processing at the time. Health care professionals need to be very aware that not presenting with pain as a symptom does not necessarily rule out a diagnosis that normally requires pain to be present. And they need to be aware that when we express extreme pain from something that seems like it shouldn’t hurt, we are not being “big babies” we are in genuine pain from a nervous system that is often quite unpredictable and gives us genuine and often intolerable pain in situations that someone else might judge “not painful.”

On top of that, we are sometimes awake during anesthesia. We sometimes remember clearly what transpired during “twilight sleep.” We sometimes under-respond to local anesthesia and are traumatized twice – once by the pain and a second time by health care professionals’ response to our pain. I went without dental care for years because of a dentist who told me to stop screaming. “You don’t want to scare the children, do you?” he said. “But I’m scared!!!” I said. He was pulling out one of my back molars — the ones that have the curved roots and have to be pulled out in several different directions, like a corkscrew. My mouth was not numb. It hurt tremendously (and I have a pretty high pain threshold — I gave birth to an eleven-pound baby with no medication and got up afterward and walked out of the room by myself.) I was scared, I was in pain, and instead of comforting me or discussing further pain or anxiety management options, the dentist chose to shame and humiliate me for an honest and uncontrollable reaction to the situation.

I was not afraid of dentistry before that visit. After that visit, I could not even go to the dentist for a routine check-up or teeth cleaning. Health care providers fail to realize what severe trauma they can cause or what a huge negative impact they can have on a patient’s overall health. And, once again, it is hard to find useful information about autism and dental anesthesia because parent concerns — fear that anesthesia will cause or worsen autism — drown out the actual needs of actually Autistic people.

Education is the answer here. Health care professionals need to be aware of atypical responses to anesthesia and other medications. They need to be aware of issues like touch sensitivity and be educated about the importance of letting Autistic people of all ages know exactly what is going to happen beforehand. Many of us are easily startled. Many of us do not show extreme fear in ways that untrained people are able to recognize. Many of us can have overwhelming levels of panic or pain that medical professionals are unprepared to deal with.

Lynn Soraya has an excellent essay on the Psychology Today Web Site about the difficulty of dealing with health care professionals who do not understand autism. Be sure to check out the pages she links to at the end of her essay (one of which, Cynthia Kim’s, I have already linked in this essay.) So many of us have stories that range from very annoying to outright horror stories about being treated poorly by health care professionals who do not understand our needs or our presentation.

Once again, autism awareness is not sufficient — it can make people feel good about “doing something to help” but it doesn’t actually help. When it comes to our health care needs, Autistic people need better education of healthcare providers, accommodations in the health care setting, and above all we need autism acceptance because we will never get our health needs met until we are fully recognized as deserving of respect and dignity and are widely understood as being valuable — not for what we can do, but for who we are: your brothers and sisters, fellow human beings. Until society is willing to own us as “one of us” instead of a frightening and dehumanized “them,” we will continue to struggle and fight for the basic level of health care so many other people take for granted.

 

G is for Giraffe

The letter GThis 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.

G is for Giraffe

If you ask most people what the symbol of autism is, they will say it is the puzzle piece. Or they will talk about Light It Up Blue. Maybe they think the blue puzzle piece is the symbol or maybe the interlocking field of puzzle pieces in red, yellow, and two shades of blue.

The problem with all those symbols is that they were chosen by people who were not Autistic. A bigger problem with those symbols is that many Autistic people are offended by them. G is for Giraffe because the giraffe is one of the symbols of autism that was chosen by Autistic people ourselves.

Today I’m going to talk about some of our symbols – the giraffe, the infinity symbol (sometimes portrayed as a möbius infinity symbol), the spectrum rainbow, Âû, and the color red. I will also take time to explain why the puzzle piece and the color blue are not our symbols.

The giraffe is a beautiful symbol because it comes from Autistics speaking up against a song with defamatory language. Therefore it is a symbol of Autistic power. The giraffe comes from Autistic people staying calm while being compared to lamps and animals and turning something so ridiculous into a big joke — using laughter to battle ignorance and non-acceptance like the heroes of the Harry Potter series of novels fought their fears with the Riddikulus charm. Therefore it is a symbol of Autistic joy. The giraffe was rapidly adopted by a large number of Autistics, almost overnight. Therefore, it is a symbol of Autistic community.

If you’d like to learn the story of the giraffe as an Autistic symbol, you can read the whole backstory on the Giraffe Party blog: On the Origins of “Giraffe Party”

For a brief moment, the dandelion was our symbol but therapists and corporations quickly stepped in and took that symbol and subverted it for their goals, including, in at least one case, adding in the divisiveness that the dandelion symbolized “high functioning” autistics. If a symbol is not for all of us, it is not our symbol. If a symbol requires “functioning labels,” it is not our symbol. Symbols of Autistic culture must always represent solidarity among us because Autistic culture values acceptance and inclusion. If you ever see someone trying to take our giraffe away like our dandelion was, please step in, say something, stop them. The giraffe connects us all and must never be used as a symbol of dividing our community.

Another symbol that unites us is the infinity symbol, often shown as a ribbon or even as a möbius ribbon (a ribbon with a single twist, becoming a model for a single-sided object in three-dimensional space because it has no front or back.) And, yes, it too has been taken and subverted in unpleasant ways, but still belongs more to us than to those who have taken it and made it out of a puzzle-piece ribbon or made designs that put the infinity symbol and blue puzzle pieces together in piece of jewelry that donate profits to Autism Speaks.

The infinity symbol can be depicted in different colors, but it began with a rainbow spectrum of colors to symbolize the great diversity in the Autistic community. Many people use the rainbow infinity symbol to represent the larger neurodiversity community as well — neurodiversity being about the full range of neurotypes, not just the autism spectrum.

I would appreciate some help with the history of the spectrum infinity symbol. The first place I remember seeing it was in the logo for AFF (Aspies for Freedom – a group that accepted and sought to unite all people on the spectrum, despite the name of the organization.) in 2004. The symbol has been widely adopted and grown much larger than AFF in the years since the founding of that group.  AFF also established Autistic Pride Day (June 18th) which is still observed by many people in the Autistic community as a day that we can celebrate without the emotional difficulties so many of us experience in the month of April.

If I have it wrong and the infinity symbol goes farther back in our community’s history, please leave a comment to let everybody know!

Âû is the symbol of the Autistic Union. The A and U stand for autism but many folks have also adopted the color gold because Au is the chemical symbol for the element gold. Because of this, there are some folks saying “Light It Up Gold” (instead of Blue, the Autism Speaks color.) Âû was started in Australia but is a world-wide phenomenon (not an organization because no one is in charge of Âû – it belongs to everyone who accepts the ten principles.) Âû was started as something to add to one’s Facebook name to indicate solidarity with the principles of Âû but, like many symbols of our culture, Âû has become something larger than just a Facebook identity.

Finally, the color red was chosen this year as a bright and visible alternative to the Autism Speaks color, blue. The campaign is called Walk in Red and includes wearing red and blogging/tweeting/writing/celebrating Autism Acceptance. Not only is blue undesirable because it is the color of Autism Speaks, but blue is not inclusive, since Autism Speaks chose the color blue (from Rosco filters) to represent boys, automatically excluding women and girls:

“The first question we wanted to ask was – why blue? What does the color blue have to do with the autism spectrum? The answer is that Autism Spectrum Disorders are almost 5 times more common among boys (1 in 54) than among girls (1 in 252). So, the color blue represents the boys diagnosed with autism.” – Rosco’s comments about being the official shade of blue for Autism Speaks.

As for the puzzle piece? From the beginning, it was meant to symbolize something missing from Autistic people. That is offensive. We are not missing or lacking parts. Autisticook has written about the history of the puzzle piece symbol. And you can read more reactions to the puzzle piece symbol at Unpuzzled.

I’d love to see a discussion in the comments section of other symbols of Autistic culture I may have missed. Thanks!

 

 

 

Follow

Get every new post delivered to your Inbox.

Join 1,091 other followers