perspective

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Oh, guys. I’m all over the place this morning. You see, comments and questions and, “But you don’t understand”s are still steadily streaming in in response to my post about the damaging rhetoric that Autism Speaks insists on continuing to use despite the passionate protest of Autistic people and their families.

And so, while I’m dying to tell you a neat little story about Brooke’s teacher from the other day, I can’t do it without acknowledging the elephant in the room.

And you know what? I just realized, as I typed that last sentence, that the little story IS the bigger story. Holy crap. Stay with me, okay?

On Wednesday morning, I walked Brooke into school so that I could chat with her aide, Ms J. I wanted to let her know that we were going straight from school to the dress rehearsal of Katie’s play, and that I knew that Brooke was anxious about it. Those kinds of things are important to Ms J. Understanding how Brooke feels matters to her. Which is why she’s so good at what she does. 

When we got to the classroom, one of the teachers, Ms. K, told us that Ms. J was absent. Brooke took a moment to process the information and then asked, “Is she sick today?” Ms. K told her that she didn’t know. Brooke then asked, “Will you be the role of Ms. J today?” Ms. K explained that Ms. N and Ms E. would be coming in to help out.

Ms K then sent Brooke to her desk to take her chair down. I took the opportunity to tell Ms. K what I’d planned to tell Ms. J.

I quietly told her that I knew that Brooke would be anxious about the play. That we had to leave right at dismissal and head over, and that I was concerned about how it would all play out, especially given that she wouldn’t have any break in between school and the play.

Ms. K said, “So do you want us to make sure that she has some downtime at the end of the day?”

“Oh my God,” I said, “if you can, YES!”

I hadn’t really thought about the fact that downtime could happen IN school, but of course it could.

She said, “We’ll just make sure that the last thing she does before dismissal is something she likes and finds relaxing – maybe some time on the computer to play one of the learning games she likes.”

“That would be FABULOUS,” I said, probably a little too enthusiastically. “Thank you!”

And off I went, sort of in love with Ms. K.

You see, the reason that this story is not as small as it seems is that at the crux of it is the fact that Ms. K was looking at the day FROM BROOKE’S PERSPECTIVE. She saw that Brooke’s day didn’t end when she left the school. She saw that she would need to pace herself in order to be able to handle what was coming next. She SAW the world through Brooke’s eyes. And she did it as though it were the most natural thing in the world. Which I dare say it can be, if we’d allow ourselves the habit.

On the way to pick Brooke up later that day, I got a message from a friend. We’d been in the middle of a pretty heavy conversation about Autism Speaks, Mrs. Wright’s words, the community response, and the big old tangled mess left in their wake.

What follows might be a little awkward as I can only share my half of the conversation as I didn’t ask permission to use his and I’m really compelled to get this out, but please bear with me. I’m going to do my best to make it all make sense.

Autism Speaks recently announced a fundraising campaign with a company called Sevenly, who, from what I understand, does fabulous work raising money for various causes. In an effort to educate those participating in the campaign, a number of Autistic activists posted their views on the Autism Speaks Facebook page. The comments were passionate, and in some cases, pretty harsh.

It is not uncommon in these comment threads to find statements such as, “You are supporting an organization that sanctions the murder of autistic people.”

Yeah. It’s pretty dramatic stuff.

And many parents say that it’s clearly just melodramatic, venomous bunk because no one at AS has ever said that they hate their child. Nor have they called for, as some put it, an autistic holocaust. These are people who love their kids and want to make life better for them.

I don’t disagree that these are people who love their children. Fiercely. And who want to make life better for them. I know them. And I know that to be true. I also know that many of them would never use the words that Mrs. Wright used. I also know that many of them believe that the only way to get the help that we, as a community, need is to use that kind of rhetoric. I don’t. In fact, I think that using that kind of rhetoric to get help is, well, not helping.

But it’s bigger than words. As much as words can hurt, it’s not just phrasing that’s problematic here. The words are reflective of the goals. And the goals, not just the words used to describe them, are the reason that it’s not nearly as far a leap to “sanctioning murder” and “calling for an autistic holocaust” as you might think.

This is some of what I wrote, edited to (hopefully) make sense in this format.

The stated goal of Autism Speaks is the cure and prevention of autism.

What if YOU were autistic? What if you believed that autism was such a big part of your identity that it was as unchangeable as your ethnicity, your eye color, your height? What if you had been bullied in various ways throughout your life for being different? What if, through that process, you’d begun to realize that the problem wasn’t with you, but with those who hurt you? Who found you to be such an intolerable reminder of their own insecurities that they lashed out at you? What if you’d come out the other side with a steel will, and, of all things, pride in your differences? What if you were a non-speaking Autistic person who had found a way to communicate your thoughts by typing? What if, when you did, when you said, “I am proud of who I am. I need help but I do not want to be “cured” of something that is central to ME?” And what if, when you did, no one listened?

What if the biggest autism advocacy organization in the world was spending the money it had raised in the name of helping people like you on finding a way to cure you from something you did not want a cure for and to prevent people like you from existing in the future? Before you get defensive, please, just for a minute, let that sink in. How would it feel?

How would it feel if your parents said, “I love you so much that I want to fundamentally change you in order to relieve your suffering,” and “I want to make sure that no one like you is born in the future because it’s just too hard.”

It’s not out of cruelty. It’s not. And I don’t believe that it’s driven by some selfish desire on the part of parents to make their own lives better at the expense of their kids. I know these people and by God, they love their children. And they see them struggle. And that hurts like hell. It is awful to see your own child in a state of constant frustration and pain.

But helping doesn’t have to mean “curing.” We can help people without changing who they are. Besides, what is a “cure” anyway? I’ve said a thousand times that Autism is one word but there is no one Autism. Considering how radically differently people are affected by it, what does “cure” of it really mean? I’d argue that what it really means is mitigation of disability.

We can look for ways to mitigate the disabling aspects of autism – communication challenges, sensory processing issues, etc. We can seek solutions to the often co-occuring conditions that are far more disabling than autism itself – Epilepsy, GI issues, challenges sleeping, etc.

But instead, no matter how many autistic people stand up in protest, Autism Speaks continues to chase the goals of cure and prevention … of them.

So as extreme as it may sound when autistic activists say that AS is calling for an autistic holocaust, I get it. Extermination of a group of people doesn’t just happen by killing them; it also happens by preventing their birth.

And when they jump to “You sanction our murders,” I get that too. Because matricide and attempted matricide of autistic children and teens is in the news with frightening regularity. And every single time, the absolutely overwhelming response from the media is wholly sympathetic to the parents, citing “the challenges in raising these kids” as per Autism Speaks’s rhetoric about the burden that befalls their families. And, most horrifyingly, the perspective of the kids themselves, the victims of these unthinkable crimes, is completely absent from the conversation. I don’t think it’s really a big stretch to say that those who devalue autistic life by only talking about the negative effect it has on everyone else have some culpability in that.

Do I think it’s the most productive or civil strategy to shout down good people who think they’re doing the right thing? No. I don’t. But do I get why they’re doing it? Yeah. I do. And do I get why their response is so visceral and passionate? Yeah. I really, really do.

Because when people like you are murdered and the immediate response is sympathy for the killer, it’s terrifying.

And when the people who are raising money to, in theory, be your voice, aren’t hearing your very real and very valid concern about their rhetoric contributing to your lack of safety and security, well, you finally start screaming.

The other day, I wrote the following on Diary’s Facebook page …

A reader left a comment here last night that I want to scream from the rooftops, paint on a billboard, put on the side of a city bus and fly on a banner behind a plane.

Comment: “The parents I know of so-called low functioning children are getting sick and tired of their beautiful amazing awesome kids being used as pitiful and pathetic examples of how awful and intolerable autism is. This is NOT about where a person is on the spectrum. ALL autistic people deserve to be respected, heard, and treated as FULLY HUMAN. We need to be mindful of THAT. As (another reader) said – there can be nothing worse than being viewed as absent – that applies equally to ALL autistic people regardless of how severely they are affected. In fact, the more severely affected an autistic person is (the more their ability to communicate in conventional ways is affected), the more vulnerable they are to abuse and mistreatment by society as a DIRECT RESULT of the fear mongering rhetoric of Autism Speaks – because how will they report it, and who will even CARE about the mistreatment of an empty, burdensome, not-even-real shell of a person. This is about human dignity and respect – and that is a UNIVERSAL right, not a right of only the so-called high-functioning.”

None of this is about where people fall on the spectrum. There is no mystical line where severity of condition (be it the challenges of Autism or otherwise) trumps human dignity. EVER. This needs to be heard. This is not about “high” vs “low.” It never was. It’s about dignity.

Recognition of dignity = safety.

I cannot, will not, continue to support the message that any level of need, no matter how severe, trumps dignity, trumps safety, trumps a right to self-determination wherever possible. Not in good conscience.

 

38 thoughts on “perspective

  1. I get it. So well said, as usual. So what in your opinion should Autism Speaks’ “goal” be other than cure and prevention? Would love to hear your thoughts!

    • I think she answered that question in the very post you are replying to:

      “We can look for ways to mitigate the disabling aspects of autism – communication challenges, sensory processing issues, etc. We can seek solutions to the often co-occuring conditions that are far more disabling than autism itself – Epilepsy, GI issues, challenges sleeping, etc.”

      Helping us be the best people we can be, assisting us with our challenges, finding ways to provide therapy to people who lack resources, assistance for adults (like more job training and placement and such)… there are lots of ways to help that don’t involve “curing” us of who we are. A cure is for a disease, and I am *not* a disease.

      • I was going for two summary words to replace “cure” and “prevention.” Think that may help distill the discussion down to its essence.

      • I was once asked, “If you have so much trouble with the fact that Autism Speaks uses the words “disease” and “cure” in its marketing materials, what would you have them say instead?”

        I thought about it for a moment, and said, “Well, I suppose I’d like them to implore the public to help us find ways to mitigate the disabling aspects of autism while recognizing and celebrating its more positive attributes.”

        My questioner cocked his head. “Okay, so how does that read on a sign?”

        I’ve never felt more awkward (this is a lie, but go with it) than when I answered, “Celebrate diversity! Mitigate Disability!”

        I recognized the folly of my attempt at copy writing long before he said, “Wow, you suck at this.”

        He was right. I do.

        Because for me, trying to reduce autism awareness / education / advocacy into a soundbite is a farce. Distilling our lives and our mission into five words or less is an exercise in absurdity. This is not the stuff of slogans on billboards – this is messy and sticky and complicated and real. This is humanity.

        From No Sides From Which to Choose, June 2013

        😉

      • Trying to reply to the string I started with a well-intended suggestion to possibly find the right words. Sorry I stirred up negative emotions; I will back away meekly now.

      • I wish they would focus on acceptance and support for Neurological diversity. There are a lot of causes of neuro diversity beyond autism and promoting the acceptance of brain based differences would help them all and allow a sense of community and support between individuals with brain based differences regardless of cause / diagnosis. Just think if people with ADD / ADHD, ASD, TBI, SPD / SID, FASD, BPD, etc and those that love and support them were all working together to make a different how much we could achieve?

    • Well, there are plenty of resources and research that autistic people ARE clamoring for: into amelioration of co-occurring conditions and side issues (seizures, gi issues and all the rest), improved communication technology and access to affordable communication technology, and acceptance of use of that technology as being compatible with fully competent personhood, techniques of facilitated communication and how/why it works for some people, educational access and equality, access to arts, music, and theater education, access to safe and affordable community housing, issues related to aging as an autistic person, job discrimination and employment preparation (including education for employers about how autistic/disabled employees can be an asset and not a burden), how to ensure that the ADA’s protections include those with invisible disabilities, prevention of all kinds of abuse against us (every kind of abuse is rampant against autistic people: verbal, emotional, physical, sexual…some surveys estimate that over 90% of autistic girls have been subject to sexual abuse) and resulting high rates of PTSD, depression, and anxiety among autistic people, into valid therapies for various challenges that aren’t inherently abusive like many in the past couple generations of kids have been subjected to, self-advocacy training for younger kids, general acceptance and respect of neurological and cognitive minorities in wider society….

      There’s not really a shortage of ways to materially help improve our quality of life that don’t include preventing us from being born.

  2. I haven’t agreed with you about this up until now, but you might have just changed my mind. I need to keep thinking about it — thanks very much for keeping the conversation going.

  3. Great post Jess, as always. I know you must be feeling stressed and exhausted by all of these emotionally charged conversations, so I am even more grateful and impressed that you are finding the energy to keep using your amazing platform to get this critical message out. I can’t tell you how many people I send to your blog to understand the “other” wonderful side of autism. It’s so important, especially for parents of newly diagnosed kids. Thanks again, from the bottom of my heart, for all you do for our kids and all of us who love them.

  4. i agree with all of the points here…the extreme rhetoric on both sides (with Autism Speaks and those who oppose them) just goes too far, to the point that it causes more harm than good. And even worse, I think a lot of people out there want to learn about the issues…want to understand more, and find a community they can belong to. But the extreme language just pushes a lot of people away. I think there are many, many people who are on the spectrum, or who have family on the spectrum…people who would love to take part in a community…but they see the hostilities and they just slowly back away. Hoping we can find words…words chosen carefully, that respect the enormous diversity of experiences…and bring in that silent community, let them know they have a place in this discussion. As it stands now, the autism discussion is looking too much like this countrys political discussion…the loudest and harshest make the most noise, suck up all of the oxygen and hijack the debate. Meanwhile, a silent majority just feels shut out, pushed away by all of the histrionics.

    Really love your perspective because I think it’s the right one, and I hope it can signal to many that, yes, we can actually have a respectful discussion about complicated issues. Thx so much for sharing these thoughts, Jess.

  5. This is brilliant and applies to many issues such as ADD, ADHD, Downs etc., etc. Thank you for being a stand that we are each wonderful . As we are.

  6. Thank you, once again, for your words, and for the opportunity for us to express our own thoughts about this. Again, I think what’s of utmost importance in these discussions is to include the perspectives of autistic individuals. Not only does it remind us that autism isn’t just a “pre-k condition,” but it reminds us that our children will be adults themselves. And it helps remind me that autistic adults are, in fact, my own peers. I hear so often that word, peers, used to describe either autistic people together, or NT people together,but rarely, if ever, do I read something referring to NT and autistic people as their own peers. But when we have these conversations, and we include autistic voices (in whatever form that may be), it’s so obvious that we should all be in this together. And once we listen to and read the words of those one the spectrum, it’s impossible to ignore the fact that ultimately, our personal feelings about this topic are second to those who are living the autistic life, and by allowing hurtful words like burden, empty, in another world, a shell, etc, to be a part of the dialogue, we are saying it’s okay to treat other human beings as less than fully human. And ultimately, we are allowing this world to treat our own children as less than fully human. You’ve challenged us time and time again to be the change we need in this world. I can’t think of a better time to start than after these conversations.

  7. That was wonderfully said (reblogged!). You so often say what I feel, really. It’s amazing.

    And the “little story”? Yeah, timing couldn’t be better on that. My DS is integrated in first grade, and attends aftercare till I can pick him up from work. So his day goes from 7:50am-2:40(school)-5:30pm(aftercare). Over the last 2 weeks, he’s been “overly physical” 3 times – one minor injury (icepack for the other kid), not good behavior stuff. From what I can tell, it’s when he’s frustrated by other kids behaviors – he’s reacting first, or he’s not understanding the kids, or doesn’t like what they’re doing. He LIKES aftercare (great toys, fun kids), but I think he’s “running out of tokens”, because even the counselors say it’s atypical behavior. I’m hoping the holiday recharge will help.

    But when you said “I hadn’t really thought about the fact that downtime could happen IN school, but of course it could.” I burst into tears. I don’t know what he needs for downtime (he loves ipads, PBS kids, etc.). You gave me “permission” to ask, and his team at school is great, so I know we’ll find a way to help him deal.

    Thank you, again. You’ve made such a positive impact on my life, and your words/experiences help my son too. I’m SO glad I found your blog.

  8. So well said. I think this is a very, very important discussion. Thank you for coming back to it and encouraging all of us to really look at the issues.

    For me, it has been important to learn that just because I may not get an immediate or expected response from my granddaughter, that doesn’t mean that she didn’t hear or understand some or all of what I said. It is NEVER okay to treat her as absent or to allow others to do so unchallenged. Helping her find ways to express herself and be understood is one of the most important endeavors I can imagine.

    This is a lifelong learning process for me, one that is helped along greatly by these thoughtful discussions. Thank you!

  9. Couldn’t agree more. Brings me back to the words of my daughter, who – when discussing what Autism means to her centered on the abuse that people on the spectrum suffer at the hands of bullies.
    We have to remember that bullying isn’t always obvious. My daughter once had two best friends that would play with her, but treat her like ‘less than’ most of the time. She was confused because they seemed to care for her, while equally making her feel like shit about herself all the time.
    AS feels a whole lot like those two girls to me.

  10. I really appreciated this post. In the LBGTQ community, the analogous story is about “reparative” therapy, therapy designed to help you rid yourself of your gayness. I have been following your posts about Autism Speaks – but this one in particular really resonated with me. Thank you.

  11. This is a great post! It makes a lot of different, spectacular points. I want to clarify one thing.

    My understanding of the “sanctioning murder” comments is that A$ has never apologized for, retracted, or attempted to repair the damage done by Allison Singer’s comments in Autism Every Day that, were it not for her nondisabled daughter, she would have driven her autistic daughter, and herself, over a bridge.

    Those comments were made in front of her autistic daughter.

    If that’s not sanctioning murder, (if that’s not saying you hate your kid, if that wouldn’t be cause for child protective services to remove a nondisabled child, if that’s not just out and out reprehensible,) I don’t know what is.

  12. Just last night my 5 year old autistic son talked about “the bad part” of his brain and how the “good part is closed off”. His class is doing a curriculum of “how to fill your bucket” in kindergarten. Apparently there was a picture with a brain with puzzle peices, and this is what Fraser took away from it – that he has a bad part that is active and good part that is closed off. This couldn’t be further from the truth.

    And I was frozen by his choice of words. I have never said anything about parts of his brain, only that he has extra wiring and special wiring. His words reminded me of the poor young man who took his own life to get rid of the bad part of his brain.

    Finding a “cause” for the dibilitating aspects of autism seems like a worthwhile goal, although it is certainly not my focus as an autism parent concentrated on acceptance, treatment and support. Words do matter and we must choose our words in a way that we would say ANY of them in front of our autistic children and autistic adult friends. Words matter so much.

  13. Pingback: The people behind the labels | Joy on a Shoestring

  14. Maybe we shoould work on educating new generations to be more open minded to acceptance, respect, neurodiversity, tolerance no matter how disabled somebody might be, a human being still. World is huge, so should be our acceptance towards others.

  15. I’m crying. How beautifully written.

    I am an Autistic Spectrum woman who has an Autistic Spectrum son and is married to a man who has autistic qualities and who has the biggest heart of anyone I’ve ever met. I cannot tell you what this post means to me. I, in the past, always worked very hard to hide that I was different. I didn’t stim in public (well, not as much as in private), I tried to behave like everyone else, including feigning interest in things like makeup, jewelry and fashion and relationship stuff etc., and I tried my best to make my way in a world that really does not make a lot of sense to me. Why people tease others, hurt others, want others to be like they are is beyond me. I was bullied very badly in school, I was teased for being different, not just by my fellow classmates but by teachers as well. I spent much of my time alone. I spent most of my time inside my head trying to keep out the on slot of painful sound, lights, touch, and the words people used to make me feel lousy about me being me. I was quiet and withdrawn. I am introverted much of the time. I was beaten up and I was made to feel incredibly separate. My family did not know I was autistic and we didn’t find out until my son was diagnosed. I realized he was a lot like me and I wanted to know what it was that we were. What was going on? I’m so happy I got the diagnosis but not because I was looking for a cure for my son and I. Because it was so good to know there was NOTHING WRONG WITH ME! I am autistic. My son is autistic. It’s just how we are. It’s just how we were born, just like anyone else. We were born the way we were.

    It makes me so sad when people tell me they can hardly tell I’m autistic or that my son is autistic anymore as if they thing that is a real compliment. At times like those I realize how much I’ve conformed to their version of what specific human behaviors are acceptable. I’m changing all of that. I’m challenging it. I’m becoming much more comfortable in my own skin and in my own behaviors and likes and dislikes and my sensory sensitivities. My husband has been an amazingly loving and accepting person in helping me with that as well as a very loving, kind, open minded therapist who loves people who are what she calls: Sensitives. I realize it was the people of the world around me who did not accept me for me. I realized that my learning to degrade myself for the humor of others based on the fact that I had always been degraded by those around me for being who I was was not something I needed to do in order to have friends. Nothing is worth that. It’s amazingly sad and tragic to me that people on the spectrum have been taught by those around them that they are not acceptable, are broken, don’t deserve respect or dignity because they are autistic. It’s so dead wrong.

    I’m sick of hearing how we need to “cure” autism. Yes, we may need extra help, like when I cannot go into certain stores without the help of my husband due to lights and auditory issues or cannot attend certain events or family functions (which I used to force myself through). But that’s just part of who I am. It’s how my body functions and to fight against that is to fight against myself. It’s not fair to me. I’m tired of not being fair to me and I don’t want my son to learn that he shouldn’t be fair to himself and love himself and care for himself for who he is, as well. It’s taken a lot of years to get to this place I’m at right now.

    I agree with you also about the Things that seem much more difficult to handle are things like the seizures you mention, gut issues, sleep issues and the like. I agree with you.

    I know everyone is totally entitled to their opinions. I wouldn’t stand in the way of that. However, Autism Speaks isn’t even giving anyone else the room to speak up and be heard. They pour out fear rhetoric and don’t let those of us on the spectrum speak up and give hope and understanding to those families who have autistic spectrum children. They don’t act as if we on the spectrum have a voice or any rights to be heard and have an opinion about ourselves and how we are treated or seen. I want to have a voice for myself and I want my son to have a voice for himself. I think everyone on the spectrum in which ever way they do communicate (and people don’t realize a lot of times that behavior is a form of communicating if one cannot speak- a rage doesn’t mean noncompliance with authority- it may be because there is too much noise, movement, distraction, pain, disorientation, etc…, handflapping is to calm down or signals agitation building or anxiety, and so on…) should have a voice.

    Sorry, I know this is long. I was just so very, very moved by this post. Your love for your daughter and passion for what is right are very well expressed within. It is very well stated and compelling and rings true without trashing anyone but remaining totally true to what you see as right and what you see as wrong and the actions you are taking due to those views. Thank you so much. I concur.

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