what i believe

*

Good morning, my friends. Last night, I posted the following on Diary’s Facebook page:

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This morning, that number was 17,163.

I have no idea what to say. Well, other than, “Welcome,” to those who have just joined the party. People often ask me, when they’re first starting a blog or a group or a Facebook page or a drumming circle for autism, how to attract followers. My friend, Kate, without knowing it, provided the answer last night when she very generously wrote about Diary on her own Facebook page.

“Speak the truth and they will find you.”

That’s always my answer to those who ask.

My truth isn’t always pretty. In fact, it can be downright messy. But I lay it out here in hopes of creating a dialogue. In hopes of dragging it, even when it’s kicking and screaming, out of the darkness and into the light. In hopes that I might encourage others to do the same. In hopes that if enough of us tell our stories, the darkness will eventually be flooded with light until it ceases to be. In hopes that acceptance will overwhelm shame and celebration of humanity in all of its messy glory will drown fear.

And so I write.

I realized from some of the questions from newer readers last night that many people following Diary don’t know what I’m all about. I’d invite them to read my blog, as it’s all here, but that might be a little much to ask. So in the meantime, I thought I’d offer up a primer of sorts on some of what we do here, and more importantly, why.

This is what I believe.

I believe that although autism is one word, there is no one autism.

I believe that despite similarities, the shared label among widely varied conditions can, at times, be a farce.

I believe that “high-” and “low-functioning” are dangerous, dismissive, and wildly inaccurate ways to describe human beings that often rob those who need help of getting it and those who are far more capable than they might outwardly appear from being seen.

I believe that an outward appearance of competence doesn’t actually exist.

I believe in human dignity and the right to self-determination above all else.

I believe that at the root of being a good .. anything .. is respect.

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I believe that it is my responsibility as a parent of an autistic child to seek autistic perspectives and to ensure that their voices are a part of every conversation about autism.

I believe that, outside of my own child, autistic adults are the best resource I have.

I believe that, nonetheless, one person’s experience is unique from the next, spectrum or not, so while it’s the best place to start, it’s not the place to end.

I believe that behavior is always communication.

I don’t believe that non-verbal means having nothing to say.

I believe that spoken words are just one form of language – and an unreliable one at that.

I believe that when we begin to listen, not just with our ears, but with our eyes and our heads and our hearts, we will see how much our children – verbal or not – are already telling us.

I believe that sometimes, the greatest gift that we have is silence.

I believe that there is strength in flexibility.

I believe that extreme ideology is always dangerous.

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I believe that progress will be made from the middle ground.

I believe that when we point fingers, we should start with ourselves.

I believe that when we start a sentence with, “Someone really should … ” we should probably BE that someone.

I believe that telling our stories changes the world.

I believe that the most progress comes from humanizing labels.

I believe that labels can be tools and keys and other wondrous things – both for us and for our children.

I believe that knowledge is power and knowledge of oneself is the greatest tool there is.

I believe that sharing our children’s diagnoses with them is a matter of fundamental respect.

I believe that we can only end discrimination by driving out fear.

I believe that we can only drive out fear by being visible as real, whole, three-dimensional human beings.

I believe that change begins when those who would throw stones can say, “Oh, I know someone who ..”

I believe that we all are that someone.

I believe that cocktail party awareness is very, very different from real awareness.

I don’t believe that numbers tell a story.

I believe that autistic meltdowns have almost nothing in common with tantrums.

I believe that our reactions to autistic people often create more difficulty for autistic people than autism itself.

I believe that “person-first” language is not what you might think it is.

I don’t believe that saying that someone is autistic denies their personhood any more than saying that they are Jewish or Catholic pinholes their entire identity into their religious preference or that them self-identifying as gay or straight negates the fact that they play a mean guitar.

I don’t believe that one can make a distinction between ones experience of the world and who one is.

I believe that everything that my daughter experiences, she experiences through the filter of autism.

I believe that autism deserves just as much credit for the awesome as it does blame for the hard.

I believe that seeing the world differently is a gift.

I believe that sensory challenges suck.

I believe that they also might be why my daughter sees music in light and why she loves to watch pools of water in the sun.

I believe that there is nothing harder than not being able to communicate.

I believe that we have to find alternate forms of language. Now.

I believe that connection exists without words and engagement is not always what we expect it to be.

I believe that meeting our children where they are, rather than where we think they “should” be is a gift to us both.

I believe that our children need to know that they are not broken.

I believe that when we tell the world that we hate autism, that we’ll fight it at all costs, that we are hurting our children.

I believe that THIS

and THIS …

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… are why.

I believe that everyone has the right to be spoken TO and not about.

I believe that when most people use the word “Cure” they actually mean “mitigation of challenges.”

I believe that the world would be a lot better for autistic people if we could use the latter instead of the former.

I believe that we have to listen to autistic adults when they tell us how it feels to be told that the goal is the cure and prevention of autism.

I believe them when they say that they hear that we don’t want people like them to exist anymore. Because that’s what cure and prevention mean – an end to people who experience the world as they do.

I believe that must hurt like hell.

I believe my daughter deserves better.

I believe that we should be spending time and money on creating supported employment opportunities for people with disabilities. I believe they are our greatest (nearly) untapped resource. I believe that the choice is a simple one no matter how we look at it, even strictly financially – because we either allow everyone to contribute to our economy or we let a system persist that insists that so many live off of it.

I believe that the broader implications of putting people to work will be staggering – fulfillment, self-worth, dignity, financial independence, less depression, less indigence, and, oh yes, a creative and motivated workforce who might just shake things up a bit with an entirely new perspective.

I believe that political activism comes with this territory, like it or not.

I believe that autistic self-advocate is a misnomer. Every autistic advocate I’ve ever met advocates for a hell of a lot more than his or her own interests.

I believe that too many people think that only those with Asperger’s can and do advocate.

I believe that marginalizing people dehumanizes them and that dehumanization kills.

I believe that learning to say, “No,” is the basis of all self-advocacy.

I believe that my children, both of them, have already made this world a better place simply by existing in it.

I believe that I owe it to both of them to do everything in my power to help create a world that celebrates humanity, welcomes difference, and greets every human being with respect.

I believe that the best way to create that world is by example.

I believe that one of the greatest gifts we have is the gift of truly seeing another human being and being seen in return.

I believe that the basis of friendship is the willingness to learn another’s language.

I believe that we need to remember to take care of ourselves in order to take care of others.

I believe that laughter heals.

And so does a skinny vanilla decaf latte.

I believe that this road can be hard.

I believe that to say that because I have an autistic child I know what it’s like to parent a nonverbal child or a child with Asperger’s or what it’s like to BE those children, is as insulting as it is dangerous.

I believe that telling anyone else how they should view or describe their own autism is the height of arrogance.

I believe that generalizations can be lethal.

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I believe that each of us has something to contribute.

I believe that when we work together, 17,163 of us can make a difference.

(I believe that I am out of time. )

Thank you for being here.

27 thoughts on “what i believe

  1. Good morning, Jess. Is there any way you can make your “sayings” into links? I especially love the one about respect.

    • If you mean the pictures, you can click on them and they come up as links. Since they’re tagged for sharing, you’re also welcome to snag them right off the blog or the Facebook page and share them straightaway. That’s not the case with photos of my kids, but anything with diary of a mom on it, you’re welcome to take. 😉

  2. Yes, yes, yes! That was wonderful. (reblogged at walkinontheedge.wordpress.com) 🙂

    I was really moved by “I believe that when we start a sentence with, “Someone really should … ” we should probably BE that someone.” A simple sentence, but boy, it says a LOT.

  3. And that, Jess, is why I follow you. You write what my brain can only scratch. You say what my heart cries for my sweet girls. Thank you for being a creative, loving, caring, understanding voice not only for our children but for us as parents working to find the best for our children.

  4. Because of you, my husband and I had the verbiage necessary to be better advocates for our 9 year old daughter Kylie at her IEP meeting yesterday. Our team is great. We were heard and understood and some great changes are being made. Thank you. Thank you. Thank you for writing this blog. 🙂

  5. Thank you for every word! You have the beliefs that we all should have. All of us who read this, should honor your courage to say what you believe. I believe that everything you said is true. I also believe that being educated on autism. and having a kind heart, will allow us to accept and respect children and adults with autism.

  6. Wow. Thank you for this post, and for your blog, which has made me a better mom to my happy autistic son. He makes the world a better place, and you’ve helped me understand that it’s because of his autism and not in spite of it.

  7. So grateful you exist to write what is in my brain as a mama & support provider. I worked with adults with disabilities before I worked with kids. The adults would say “never tell your group home staff what you like cause they will make you earn it.” I have NEVER forgotten that. Which is why I practice positive behavior support with a splash of ABA. Currently under supervision for my BCBA . I grin & bear when my supervisor tells me ” you should have gotten him to request bubbles before you gave them to him.” Internally I say “you don’t walk in their shoes nor in mine as a parent of a child with autism. Sometimes you just need some bubbles.” I will play their game so I can earn my degree, support my son & family while giving away some bubbles.

  8. I start my morning with a cup of coffee and your blog because it gives me the strength and support I need to start my day . . . a way forward. This morning, you drew a map — and I think I will have to print this out and tape it on my mirror because you voiced so much of what has been stirring around in my brain. Thank you again for being here. You make such a difference.

  9. As a young adult women with autism I can’t say thank you enough for this post I wish I knew of your blog earlier. I was one of those kids who grew up believing I was broken and that has done so much damage to me over the years. It’s voices like yours that give me hope. Hope that one day autism won’t be seen as a tragedy but as a gift. This is not to say my life has been easy it’s been far from I struggle everyday with sensory sensitivities and communicating my needs even though I am verbal. But these things like you said also enable me to see beauty that not everyone can see and I’m grateful for that. Ask me or really almost any adult or kid with autism if they would choose to get rid of their autism and I’m pretty sure they would say no I say no without struggles and pain we would not know joy. Life is hard wether your autistic or not we don’t need to make it any harder, especially when we struggle with communication! Again words don’t show you how grateful I am for this and your blog, know you already have made a difference for me, your daughter and all autistics out there. I won’t rest until the world knows this and until everyone can be seen as humans first!

  10. After have spent a couple of days reading up about that horrifying autism speaks organization this might have been the first thing in days that I’ve read that has not made me want to cry from despair but rather made me tear up from happiness and hope.
    I’m sure you are a great mum to your kids.
    If my mum, dad, grandparents, or anyone around me really, had been even half as good as you at listening when i was i kid i wouldn’t have started thinking about suicide at the age of 6 or 7 when i realized that killing yourself was a thing.
    I just wanted to say thank you. Thank you so much for listening to you kid. Thank you for listening to people with autism instead of people speaking ABOUT people with autism.
    Thank you.
    And all my love to you and your family.

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