Sometimes I read something and I am completely overwhelmed by the weight and content of the words. Yesterday I read this – written by Kate. It’s entitled Scarred. It was posted on The Thinking Person’s Guide to Autism. I am including just the first few sentences. Please click on the link to read it in it’s entirety. This piece needs to be read – by every parent, every school, every “specialist,” every researcher, everyone and anyone who every comes into contact with anyone, ever, on the spectrum.
“Scarred
Kate
We are scarred, we adults on the spectrum.
We are scarred, both inside and out.
Our lives are twisted paths littered with diagnoses. We have fought for years to get to where we are now, and still it isn’t good enough.
We are scarred.”
Autism is a human rights issue. We must begin thinking of it this way. We are condemning a group of people, treating them worse than we treat convicted felons, murderers, rapists, psychopaths. We must stop. We must stop the way we think about Autism. We must stop the way we think of Autistics. We must stop oversimplifying, we must stop applying our Neurotypical thought processes to Autistic people. We must stop with our assumptions. And the only way we are going to stop is by LISTENING! We must, every single one of us, listen to those on the spectrum who are communicating and we must put aside our “but my child can’t talk, therefore this person isn’t like my child” or “this person must be high functioning and therefore doesn’t know what it’s like for me and my child” or “my child is in diapers and is nonverbal and therefore this other Autistic person has nothing of any importance to say to me” or “I can’t hear this person, they’re too angry.”
We must stop speaking for Autistics. We must stop arguing about semantics. We must stop and hear the pain our misinformation and misperceptions are causing. We must stop and listen. Listen to what we, as a society, are doing. Listen to what Kate and so many others are saying. A group of people are being abused, shamed, yelled at, blamed, talked about, treated with contempt by schools, specialists, doctors, teachers, organizations carrying the word “autism” in it’s name, parents, siblings, cousins, society, the world. We are arguing over wording. We are bristling at the word Neurodiversity, we are shouting at one another, but shouldn’t we start listening to those who we are all supposedly wanting to help? Isn’t it condescending of us to pretend to care about autism and yet make excuses as to why what so many of them are saying shouldn’t be listened to? I hear people say, well that person is too angry, therefore, what? Therefore their voice is invalid? Really? Do we really believe that when someone is saying something we agree with and want to hear? Isn’t it that we don’t like it when someone is saying something that goes against what we think or believe?
Can we all try harder to look at what we’re doing when we try to silence those who are speaking out. Do you think so many would be so angry if they felt they were being heard, that what they had to say was having an impact? Hasn’t every movement had voices of anger as well as those who tried to be civil? Don’t we need both? Do you think they would be shouting if they didn’t feel ignored, condemned, brutalized? Many Autistics are angry? Yes. Why wouldn’t they be?
Autism is a human rights issue that has been sadly overlooked. That has to change.
It must.
I know, I know. I just went on a rant. I’m taking a deep breath…
Autism can look like this… (2002)
and like this… (2003)
and this… (2004)
and this, too… (2012)
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Everything I have been saying, has been all said right here in a way that I couldn’t have done better. Finally someone who ‘gets it’. I just wish that everyone understood the same way.
Sila, I am not the only neurotypical who feels this way. There will be more and more of us. I wish I could say that everyone understood, that change would happen quickly. That you don’t need to worry. I can’t say that though. What I can say is that change will occur. It will. I am not the only one who is listening. There are many of us. You must keep talking, speaking, shouting if you have to. Your words are important. Your voice, your story, your life, matters, let it be added to all the others until the roar of your collective voices can no longer be ignored.
It’s really refreshing and even motivating to see people like you. I started my own blog for the same reason you just explained – To share my story and let myself be heard. I’m shy and even afraid, but I take solace in the fact that there are some people who do understand and who do care!
Your daughter is adorable btw! I see a lot of myself in her. :3
WOW! So much to say but I have to get to work. This is awesome Ariane and what a powerfully important message. So much to think about, so much to both confirm and adapt the way I see Ted. And I have been writing about some of this just today for tomorrow’s post. I am rambling, but that’s because you have ignited my brain and I had to let you know that before I leave.
Thanks Ariane! Thanks for the spark!
An Autistic wrote to me once – “And together we will soldier on…” but it seems apt to repeat it here to you
Kate’s “scarred” message is so powerful and definitely needs to be read and listened to and responded to.
You have opened the door, Ariane, and bit by bit more of the unheard, unlistened to, misunderstood and unconsidered are starting to stream through. They are a part of us , and we need to learn from them, not just tolerate, but bond with them.
Just keep your foot in that door holding it open ever farther and wider until at last more and more autistics can come through and be treated with respect, and then we can embrace them as they deserve. Let us help to heal those scars, we owe it to everyone who has to fight to be heard. We can change society if there are enough of us and we shout loud enough.
Love you Mom. Miss you. Sending you hugs and kisses from all of us.
Careful. If you keep speaking the truth like this, they’ll just label you as one of the angry ones, and then you’ll be marginalized and nobody will listen to anything you say ever again. If you want people to keep listening to you, you have to say what they want to hear. Like the old Simon & Garfunkel song, “All lies and jest, and still a man hears what he wants to hear, and disregards the rest.” And that song really applies to this post and to autism too.
I understand why you write this. But I believe, I have to believe, slowly, very slowly things are changing and will keep changing. Your voice and others like you are being heard. And while it must feel as though you are being ignored by everyone, many are listening and learning. I believe that will continue.
Yes, my voice is heard. My blog does not get very many readers, but the ones who read it really like it. But the ones who need to read it the most ignore it. I would like to find a way to reach out to the people who don’t have autistic kids and don’t have autistic friends. The general public. The choir isn’t enough. I want the whole congregation to listen.
Reading this made me a little sick. No, alot sick. The damage the world has inflicted upon my daughter is NOTHING compared to the damage I’ve done to her. I seriously want to vomit right now.
Angie – as they say in the recovery “rooms” it’s progress, not perfection. Every new moment is an opportunity to do things ever so slightly differently. You are learning, you’re reading, you’re commenting – one foot in front of the other. None of us do this perfectly, some of us (me) just hope that we do it better as we go along!
Angie – I just wanted to take a minute and say “hi” to you. I’m an autistic adult, and I’ve been reading your comments the past few days, and just wanted to tell you that you are NOT a horrible person. I can tell you love your daughter, and you have struggled her whole life, trying to make the best decisions you can, for her to grow up the best she can. Sometimes the “best” option turns out to be a terrible thing. Everybody makes mistakes. What matters is not only the mistakes, but how you pick up and move on after the mistakes. How you try to make things better, and keep from repeating the mistakes once you recognize them. Seek help and advice. Listen, talk, converse, understand. I see you embarking on the journey, and I wanted to say welcome and extend a hand to you from across the bridge. And thank you, for listening. Please keep doing so – we all have so much to learn.
Thank you, thank you so much for those kind words! You have no idea how much they mean to me.
I am really struggling, going through a very difficult time right now. I am really starting to realize how damaging my attitutde towards my little girl has been. God, how I love her. But I feel as though her entire life, I’ve never done “right” by her. I’m still learning, unfortunately, she’s the one who suffers while we make the mistakes.
I have learned so much in the short amount of time I’ve been coming here and commenting. As Ariane would say, I’m part of the village! 😉 It makes me so happy that you (and everyone else here) has gone out of their way to both make me feel welcome, and just for listening.
Much love to you all! xoxo
The words in this post are very true; however, I have to agree with @AspieKid, you will be condemned because no one wants to hear the reality of the situation. I constantly see the stares and feel the shut out as my children attempt to fit into society. Although the threat of being outcast exist I believe that truth must continue to be preached as harsh as it sounds because that is reality. There are many others who feel this way. We cannot be afraid to be the few.
“There are many others who feel this way. We cannot be afraid to be the few.” Yes!!
Just saw your video for Summer Stage in Central Park! Fantastic. And am following you on Twitter!
Thanks for the follow. I am working on many other projects to support Autism. Your post was inspiring and brought to the forefront topics that need to be discussed.
Thank you Kate, wherever you are. It’s tough to hear some of things you said, because I know I’ve contributed to Emma’s scarring in ways I never considered before reading the words of adult autistics. Thanks Ariane for the rant afterward and the command to “Listen!” If all parents of autistics got that simple message and acted on it, so much suffering and ignorance would be lessened.
The pics made me cry. Big surprise there, eh?
Aww…. honey.. Didn’t mean for you to cry! XXX
Haven’t had Internet – blissfully off the grid – but got on really quick to see you really selving. A beautiful thing. The more you are you, the better off the world will be. See you soon.
There you are!! I MISS you. See what happens when you leave! 😀
god love this mom and blogger
😀
Reblogged this on healing arts.
Ariane, it’s been a pleasure to watch you take the steps you are outlining here over the past months. I remember the first time I stumbled over here and left a comment, wondering whether I’d get a response, and whether I would even be able to continue reading this blog. And then you responded. You stopped and listened, not just to me, but to many autistic adults, young and old, across the world. You were the change you want to see in the world. And it has opened so many peoples eyes. And I just wanted to say thank you. For being an honest, wonderful person. For listening, thinking, and responding. For taking the time to See. (Yes that’s capitalized on purpose). Thank you. ❤
And for those who think less of Ariane after this essay, take a minute to think about why it is you feel that way. What is offensive about her incredibly powerful words. Think about your kids and the future you want them to have. A future where they are loved and respected by others. Where their lives are valued. Where they are able to shine and live to the best of their abilities, and even contribute to society in the ways that they can. And perhaps realize, that this is the first step in helping to create that future. Us Autistic Adults don't want to harm your children – we want to help them and help to create a world that is better for them than the one we grew up into. We see that you love them, and want the best for them. But sometimes the "best" from your point of view may not be the "best" from theirs. Nobody is perfect, and nobody is the same. What was best for me might not be best for your child. But what was best for someone else might be. So please, talk to me and I will listen, think, consider, and try to understand. As long as you promise the same to me.
p.s. when I read "Scarred" yesterday, I wanted so badly to comment directly on it, but I couldn't find any words to do so. Then you reposted it here with your wonderful response, and it was just too much. Thank you for existing and being the way you are. One day when she's older, I hope that Emma can read this post and understand just how much you love and care about her and those like her. 🙂
Awww (((E))) It’s always extra special to me when you comment. You were the first to reach out and through your gentle, kindness you led me through many, many doors. I remember the first time I went to your blog and then read it from beginning to end. For months Richard and I would discuss your latest post, over the summer while you were away, Richard and I would say to one another – I wonder how E’s doing? or Did you see her last post about language? She was speaking French fluently!
So glad you’re back now. And thank you for commenting and continuing to hold out your hand to me. I have been (metaphorically) holding onto it since we met!
Great work, and not just for autistic people but for all those of us in the autism ballpark or elsewhere in the vast regions of non-NT humans
Thank you Peter and thanks for the tweeting shout outs! Always appreciated.
I have mixed feelings about the original text and your response as well… as an autistic adult, I can relate to some of those experiences like being told that my own experience is wrong when for example the smell of bleach in bathrooms choked and hurt me when I was still in elementary school.
On the other hand it describes a number of experiences that are foreign to me, even though I know others have had them, like the druggy-go-round. I feel fortunate that I haven’t experienced that particular problem… but it’s also something I worry about for some non-autistics — regular NT kids who get diagnosed with ADHD just because their parents are unhappy that their kids bounce around and make “too much noise”.
I do think you make some very good points here. I agree that the treatment of autistic people — like the treatment of anyone, regardless of race, gender or neurological or psychological variance — is a human rights issue. The commentary reminds me that there was a time when it was standard practice to “treat” other kinds of neurodiversity with torture, like using an ice-water bath or electric shock to treat people dealing with the challenges of bipolar disorder. The use of electro-shock in treating depression has come a long way, and we still have more work to do in other areas, however, I’m glad of the progress we’ve made.
This is the first time I’ve heard someone mention “bristling at the word neurodiversity”… so that’s a concern.
On a more personal note I find reading these kinds of passages challenging… which actually is a sign of progress on my part. There was a time when I wouldn’t have thought anything of it, but what it tells me is that I have recovered so well from the traumas of my own past that my mood is now generally well elevated. 🙂 So that when I read passages like this that are very hurt and angry and the like, I have that natural aversion that most people have to continuing to read, because reading them is uncomfortable. I wouldn’t have noticed that before because when I read them before, I was already angry and uncomfortable. But I finished reading this one today because I consider you a friend and am interested in what you have to say. If it weren’t for that I think I might have moved on to something that I felt were presented with a bit more optimism. So make of that what you will, I thought you might like to know. 🙂
Hey there… I am sorry you felt uncomfortable, but thank you for reading anyway and then commenting. It’s always good to hear from you and wonderful that you are in a different frame of mind now! 😀
No need to apologize. It’s all good. ❤
I wasn't so uncomfortable… just enough to consider moving on, but then I decided that I have enough respect and admiration for you that reading was more important to me than finding something more comfortable to read. It's important that we do sometimes overcome our discomfort — that's often the only way that progress is made — but I think we do need to be a little choosy about which discomforts to confront and which discomforts to simply avoid. I think this was a good choice for both of us. ❤ And you're right that we do need a diversity of voices and we shouldn't shut out voices that happen to be angry just because they're saying something we don't necessarily want to hear. (And you're also right that we're happy to listen to angry voices when we agree with them.)
It was a bit of a bonus for me that reading through this reminded me of just how much progress I've made and how good my life is now, despite new hurdles to overcome. 🙂
I’m happy to hear from you. I’m also glad your life is good. You’re so talented, would it be okay to add the link to your work here? I won’t unless you give me the okay.
Hi Ariane—I think it was C.S. Lewis who wisely told us, “We read to know we are not alone.” Kate’s essay did just that for Peyton and I. I remember the day years ago, when we were just beginning to write the book, and Peyton typed emphatically to me, “You need to understand my heart was broken a million times.” This was not something any parent would relish hearing. But I knew in that moment it was true; I just had not wanted to ponder it. Still it is hard for me to allow it into my total consciousness, so painful is the overpowering rush of recognition of my child’s incessant heartbreaks. But it is so important that Peyton, Kate, and others write about this, and that mother’s and father’s of young children can understand this and change things for their child. I thank you for making sure their messages get shared so others know they are not alone in the healing journey.
Dianne
Here is the note Peyton posted to Kate after reading “Scarred.”
Kate–Decades of sad scarring wastes I, as re-tortures re-terror I. Quest I re-sweeted, awesome eases, but I wear scars feared far far far. It is my treed tread. It feels too queasy to try tears that salt my scars. So I point my queasy to heart heal by helping readers understand. It was why if we today tell of the scars we sad share, there tomorrow cherubs hopefully will grow knowing no scars. Yes, let’s try. I’m trying to out my testy by writing “treasure all.” I’m thanking you for lifting I with your sweeping tread powerful sharings. I’m readed we cared certain can here help others. Trying, Peyton
Hi Dianne and Peyton, thank you both so much for commenting. Peyton – I read your comment to Kate and loved it. Thank you for reposting it here. I will never be able to thank you enough for writing your book (i am intelligent by Dianne and Peyton Goddard, for those of you who haven’t read it, you must!) and asking me to read it.
What you both have written is important because it points to the many fundamental misperceptions currently entrenched in people’s thinking about autism and Autistics. And Peyton, you are not just “trying” you are doing! Thank you for doing all that you do.
This: “I can’t hear this person, they’re too angry.”
I used to be cornered into having meltdowns and then have the meltdown be proof that nothing I have to say is valid. It’s infuriating. It’s an abuse of power. It’s something that has been a common topic of conversation in therapy, which often has less to do with being autistic or mood disordered than it does with the various treatments, therapies, and the help my mother had from my psychiatrist sweeping abuse under the rug.
If you are not “that” parent/therapist/whatever, don’t take offense, don’t take it as a personal attack. If it makes you uncomfortable or uneasy, then make it your mission to be sure it doesn’t happen to your kids or anyone else. I know not all moms and all psychiatrists and experts are like the ones I had, but the good ones, or the ones striving to be better, should /learn/ from those of us who did not get the treatment we needed or deserved.
If a friend or classmate’s mom had seen the signs of what was going on in my life, it could have made all the difference.
Oh Ren, I just went to your blog and began reading. It’s powerful and I am glad you’re writing. Thank you so much for commenting Ren. Thank you for speaking out. Thank you for blogging. Let us all learn. Let us all learn…
Thank you for listening to the song. Sharing the song. And being moved by the song. You snarl beautifully!
A hunted ‘yote remembers all. The good and the bad. I roam the paths of positivity now. Thanks for brightening the moon!
This is a really touching blog. And this child’s poem… People should be careful when speaking of anyone with any disability. Most people don’t realize what they are saying or how they might treat others. I agree, it has to change. And each autistic child or any child is on a different level. They are special and unique individuals. Many of them have special gifts to share with the world. And they need love, understanding and compassion. They need to be treated as any child would. Great post!
Have you ever listened to Beth Orton’s song “Magpie”? I think there is a version on you tube with David Letterman. Now substitute Magpie for Autism. Notice in the song it begins with notes from an acoustic guitar. Notice by the end that a full orchestra is playing. Then read her quotes in Rolling Stone. Again, listen to the song. Tell me what you feel. I see you in her.
I watched Beth Orton on David Letterman, then read the Rolling Stones piece then listened to the version of Magpie on her album. I hadn’t heard it before.
I noticed how her voice cracks and I love that. I love that it isn’t all sung perfectly. I loved that it begins with a duet, her voice as one instrument and the acoustic guitar as the second instrument, only to be joined by an entire orchestra by the end. I loved the searching, the questioning, that thing of teetering on the edge. I felt that bittersweet tug of opposing feelings, sadness and joy, that place where the two meet and somehow meld. And I was reminded of this:
“..make me an instrument of your peace.
Where there is hatred, let me sow love;
where there is injury,pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.”
“grant that I may not so much seek
to be consoled as to console;
to be understood as to understand;
to be loved as to love.
For it is in giving that we receive;
it is in pardoning that we are pardoned…”
It is the prayer of St. Francis of Assisi and one that I memorized and said at my father’s memorial. (though I had to remove the references to god.) But mostly I felt the ache of our imperfections as human beings and our desire to connect, not just with our fellow humans, but with all things.
Now tell me. Is that how you felt?
O O O my Patron Saint has appeared! There is reason that St. Francis of Assisi is the Patron Saint of animals. That patch-work coyote! If i were to feel the ache of imperfections; id have to have something to compare it to. I find perfection in imperfection and dont feel the ache. Connections are easy, and often fleeting . . . it is the bonding that i strive happily towards by walking the paths between light and shadow. I felt the catch in breath that one gets with an ah ha! moment, and tries to make sense of it. I felt Hope.
I agree that everyone, EVERYONE (with a diagnosis or not…I don’t want to offend so I will leave “labels” at that) deserves love, respect, and opportunity. I might not always agree with how some go about trying to get those things (diagnosis or not), but I do believe there are basic human rights no one should have to fight for. I hope as a parent I don’t make egregious mistakes that leave either child, typical or autistic, feeling abused in any way. It is difficult, with so many opinions out there, but I hope we all do our best for our kids. At the end of the day I want to feel like a good mom…and have my children, typical or not, feel loved and respected. Then I will have done by job…
Hi Jen – Agreed, no one should have to fight for basic human rights. We have a ways to go on that one…
Thank you for reaching out, it’s good to meet you!
Not much I can add to what’s already been said, except maybe.. RIGHT ON! Thanks for standing up and speaking out. YOU get it!
Thanks Outoutout!
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Doing all of what the original post speaks says but one thing: “when we speak of wanting to help, but do HARM, we lie by our actions.”
Our actions proclaim the truth. When we act to hurt, to crush, to curse, and to destroy – then THOSE things are what we truly want.
Do not speak to me of ignorance. I am not buying your lies.
If you were ignorant, your actions would show it – much as MY actions – the actions of one you name a Lesser Being – show and have shown it. You would be contrite; you would try to do the right thing – even if the cost was a grievous one.
When you name yourselves as better – as more capable, as morally superior – then I expect you to BE all of those things.
Therefore, your cruelty is NOT a matter of ignorance, but of knowing and willful MALICE, and you see me as a thing to be destroyed for your pleasure.
I’m not buying your rubbish any more, Normies. I know what you are doing, and I know why you are doing it.
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