out of the shadows

Yesterday, I wrote a post about how a dear friend of mine told her son for the first time that there was a name for the constellation of gifts and challenges that help to make him who he is. I told the story about him smiling at the news that he, in his words, “has autism,” as he made the connection that his mom’s friend’s daughter, HIS friend, is autistic too.

In the process of writing it, I dug back into my archives, scouring posts that I’d written on the topic of disclosure, and why I think it’s so incredibly necessary.

In doing so, I found reams of words I’d written over the course of years and years, all pretty tidily summed up in these, from October:

Disclosure.

Telling our kids about their diagnoses.

I talk about it a lot.

Because I believe in it.

I believe that knowledge is power and knowledge of oneself is the greatest tool imaginable. I believe in honoring truth, both fundamental and individual. I believe that withholding truth creates secrets and secrets imply shame. I believe that our kids are misunderstood by so many, they deserve to be understood to whatever degree possible by themselves lest they begin to internalize and take as gospel the misperceptions of those around them.

I believe that they see and hear and process and understand a whole lot more than we give them credit for, verbal, intermittently verbal, pre-verbal or otherwise.

I don’t believe that a diagnosis creates or exacerbates a feeling of difference. I believe that being different creates a feeling of difference and that the knowledge that others share the same kind of difference creates connection and liberation and hope.

I believe that the only way we will ever demystify the words and remove their current stigmas is by personalizing them, making them real, making them about PEOPLE and not challenges or behaviors or needs. I believe that only then can we truly ask the rest of the world to understand, to exercise compassion.

I believe that labels like autism can serve as the keys to the doors that can otherwise isolate our kids, that make them think they are the only ones, and so too that they can be the keys to the community of Autistics waiting on the other side whose experiences, while not identical, mirror our kids’ far more closely than anyone else’s.

I believe that giving our kids the knowledge that we have about them is a matter of fundamental respect for them.

I believe that speaking the words aloud chokes the weeds of shame and waters the flowers of pride.

But you see, running through the narrative of what’s possible when our kids know who they are is its shadow, what happens when they don’t. What happens when human beings go through life knowing only that they don’t fit the mold, don’t see the world the same way as (seemingly) everyone around them, that they’re simply not like any other people they encounter?
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The answers aren’t pretty. In fact, they’re downright terrifying. Depression, low self-esteem, drug addiction, alcoholism, suicide. All we have to do is read the stories, the life maps of people like my dear friend, M.o Kelter, to see what a difference it can make to know that there’s a reason for one’s differences, and a community who shares them.
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On yesterday’s post, a friend left a link in her comment. “It’s one of those ‘moved me to my core’ things,” she said, and as soon as I clicked on it, I knew why. It is a story that needs to be heard. It is a story that we as parents, we as a society, we as fellow human beings, have to understand.
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I believe that giving our kids the knowledge that we have about them is a matter of fundamental respect for them.
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On Sunday, we had dinner with my friend, Lydia. Lydia is a well-known autistic advocate. Among the God knows how many other things that she’s done, she has helped me to understand some pretty fundamental things about the language of identity and respect. On Sunday night, she was gathering some friends, nearly all autistic, for dinner. I was honored when she asked me to join. I had planned on bringing Brooke and leaving Katie with Dad for a solo dinner that I thought they’d enjoy, but when Katie heard that Brooke and I were meeting up with Lydia and her friends she put on a sad puppy dog face and said, “But I want to come!” Next thing I knew, Luau was on board too and the whole family was headed out to meet the crew.
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That’s where this happened …
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Prompting me to post this yesterday …

Screen shot 2014-01-14 at 6.09.59 AM

But at the end of the day, I came back to click yet again on the link that my friend had posted. Ed note: You get that I’m just going to keep on linking to this until you read it, right? To breathe it in, to soak in it for a while — the heartbreak and the healing and, finally, the hope. And to remind myself why I do this day in and day out. Not to hear the sound of my own voice, of which I am frankly growing weary, but to help ensure that stories like Cara’s are heard. To promise the next generation that they won’t have to live through thirty years of hell before coming to understand that they are, to borrow Julia Bascom’s words in a letter to an autistic young man who had been abused, “not bad or broken. You are autistic, and you are also fine.”

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I’m so glad that y’all are here, reading my words every day. It means the world to me. But please, don’t stop here. Start here. Click on the links in these posts and the ones over there in the sidebar under Vital Perspective from Autistic Adults. There are people there from every walk of life and living every flavor of autism. There are folks who talk non-stop and others who are completely non-speaking. Please, see what they have to say about their own lives. I’m begging. Because while I do everything in my power to understand, I will always be a secondary source. Theirs is the voice that matters.

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Because, well, THIS …

This is how it starts. One by one, like exhausted swimmers, we pull them to safety. They sit in the boat, confused and scared, afraid to wonder if things might finally get better. And the pilots of the boats signal to one another. I’ve found one more. They’re safe. I’m bringing them home.

Because we are here, now. We are making our own community, our own refuge. Online and face-to-face we are finding each other, reaching out to support, to explain, to advocate. We are abandoning the many labels imposed on us – high functioning, low functioning, Asperger’s – in favour of one: Autistic.

You will listen to us, in the end. You will stop telling us who we are, how we feel, why we are wrong. When you say we have no empathy we will laugh in your faces. We will rescue those you have misdiagnosed, we will break down the doors and bring them out to join us. You will make no decisions about us without us.

We are autistic.

And we are on the march.

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Brooke either feeling really comfortable with Lydia, trying to figure out how to get her hands on that bread, or both

17 thoughts on “out of the shadows

  1. Again, Jess, once again, I am awed at your ability to put these thoughts in writing. They are so important to be shared.

    Love you,
    Mom

  2. I love that you encourage folks to keep reading, to keep discovering, to keep growing in their understanding and knowledge. It’s something I feel constantly necessary to do and it’s nice to know I’m not alone in that. I think it’s also AMAZING that your girls are growing in their own self-identity – I want that for my own guys, desperately.

  3. There is so much to love in this post. Love the community you and your girls are part of. (Ended with a preposition… too).

    Click on the link, people. Just click on the link.

  4. I so agree with this. According to school administration my son was moved to an out of district placement at the end of second grade because they could not “manage his behaviors”. Although I was heart broken, today as a 5th grader, surround by other kids like him and a staff that “gets it”, he is a happy, well adjusted child with many friends. We expose him to typical peers through family and friends on weekends and vacations. This works so much better for our family than trying to make him fit in a large public school setting.

  5. May I ask if all this might be extended to anyone who may be considered “different” for whatever reason.
    When my little guy was 4 he asked why I wore glasses. I explained I needed them to help my eyes…I told him if I didn’t wear them especially when driving then I could get into trouble if there was an accident etc.. I said to him different was ok..
    With all the wisdom of a 4 year old he replied “and different is not against the law”…
    We have had developmental delays related to a genetic condition, much improved thanks to some remarkable therapy, amazing therapists and a lot of work on home..
    Home schooling works for us. School was just too much especially when no one could accept that some children need support/modifications etc…

    • Yes, Jo! My son has ASD, and I’m ADD, which means i often have trouble reading social cues, and that “do onto others” deal only works if one has “typical” responses – and lots of things I say would never bother me to hear, but can annoy others. I was diagnosed at age 51. I spent a lifetime filled with self-loathing (and a family as a child who was sure I would make my father explode on purpose, which no sane person would do.) And I hated myself for having trouble focusing on things – it seemed a character flaw. Getting a diagnoses was such a relief! It made it all not my fault, as I am always trying so hard. We are responsible for our choices, but not when we are trying to do the right thing and it goes wrong because we are different.

      • Julia
        Now I am in tears from your reply. I have always said especially when others have said oh but you don’t want him labelled…there is a big difference between a label e.g: you are not trying hard enough, you are lazy to an explanation e.g: fine motor skills are harder because of bendy/low tone hands,
        I can relate to what you write/your experiences.. always trying to hard..School was a tough place for many, many reasons.
        It is why I refused for the same thing to happen to my children.
        Peace

    • Oh, Jo, OF COURSE. Yes, yes, yes. Always. To my way of thinking (and I’m speaking for myself as part of the autism but not autistic community), the day that the autism community becomes like diagnosis-demanding or otherwise exclusionary is the day that we’ve truly lost our way.

  6. Yesterday my 6 year old daughter and I were talking about all the autistic people we know. We talked about he brother and sister and other kids in her school, some autistic bloggers, and I showed her this picture that you posted and some others of other people from Facebook. Her response, “So there’s quite a lot of people I fit in with. Cool.” And that was that. Kind of the whole point of disclosure if you ask me. Community. Priceless. Thank you for this.

  7. You know you are changing the fabric of so many autistics lives, right? I read your Facebook posts, and your blogs and sometimes I think, Gawd, Jess quit being so overly dramatic. But then I catch myself thinking about what you write, changing my behavior, changing how I see my daughter, how I interact with my daughter. I read your links and then links of those links. I email friends small snippets, forward parents paragraphs, find ways to share bits and pieces. I hand them out to people who might need them, who might be struggling, wondering. This paragraph from Lyssa and Me struck me the most this week:

    “This is how it starts. One by one, like exhausted swimmers, we pull them to safety. They sit in the boat, confused and scared, afraid to wonder if things might finally get better. And the pilots of the boats signal to one another. I’ve found one more. They’re safe. I’m bringing them home.

    Because we are here, now. We are making our own community, our own refuge. Online and face-to-face we are finding each other, reaching out to support, to explain, to advocate. We are abandoning the many labels imposed on us – high functioning, low functioning, Asperger’s – in favour of one: Autistic.”

    Because even though this was written from an autistic to an autistic, it struck me as if it was written as a mother to a mother. I’ve formed countless friendships with other mothers of children who are autistic. We find each other, meet for coffee, share resources, read their blogs, drag them into our boats and show them it’s ok, we get it. That’s what your blog does for me and thousands of others.

    Keep it up, Jess. You are rescuing so many.

  8. Jess, you’ve given me so many tools for understanding the autistic world (as well as I can, given that I can’t generalize every topic to every person) as a neurotypical person wanting to make a difference. I’ve posted a few times here about my boyfriend, who was diagnosed with autism only a year ago, and since then my life has changed dramatically. Through the links you’ve shared, blogs you’ve recommended, and people you’ve mentioned and praised, I’ve found so many resources for my day-to-day interactions with the incredible people I work with. Your blog is what made me finally realize that I want to dedicate my life to autism. It’s the reason I have the jobs that I do now, and it’s what triggered my dive into an incredibly and beautifully diverse world, which has only proven to make me more passionate.

    I am so thankful for you, and for Brooke, and that you share these sources. It’s changed my life. I mention all of this because, once again, you’ve reminded me of how much respect everyone is entitled to and how beautifully it is displayed when people are able to love themselves, in spite of a world that tells them they have to be like everyone else.

    Thank you so much for your words, stories, and experiences.

    p.s. I’m going to apologize now if I butchered some descriptions and sounded disrespectful to any other person at all. I’m not great with words.

  9. Oof. Tender spot, that.

    “One by one, like exhausted swimmers, we pull them to safety. They sit in the boat, confused and scared, afraid to wonder if things might finally get better. And the pilots of the boats signal to one another. I’ve found one more. They’re safe. I’m bringing them home.”

    In the boat. Definitely not piloting a boat. But in the boat. Probably laying in the boat, at this point, to be honest. Like, laying along the bottom of the boat. In my head, this specific boat is a mix between a cheap metal rowboat and an awkwardly broad canoe. It does, however, contain snacks. It would seem that I am not only laying on the bottom of the boat; I am also eating all the snacks. There is no extended metaphor I cannot run aground. “We are autistic. And we are on the march.” We’re safe. With snacks.

  10. It definitely feels like something new and different and exciting is happening…i think there have been so many divisions in the autism community for so long, that many people are looking for safe ground, for positive voices, and it definitely seems like there are new connections happening, ones that are constructive, respect-based. i think your writing, jess, and your ability to accept and love others is one big reason it’s happening.

    and i think it’s bigger than one community, i’m hearing from down syndrome groups, tourettes groups, and more…i think this thing that is happening is bringing together a huge diversity of wonderful minds, from many different areas. like i said: exciting. i don’t know how to name it yet, but something is definitely happening.

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