I have to begin this post with some gratitude. Angela, whose blog – Half Past Normal – a wonderful blog I hope all of you will visit, reached out to me yesterday with a lovely comment. As with all the comments people leave, I was left feeling so fortunate to be among such a wonderfully vibrant and diverse community. Thank you Angela for thinking of me and reaching out to me. It made me very, very happy.
I wrote yesterday about feeling off kilter, feeling what my father would have termed – je ne c’est quoi – I couldn’t put my finger on it, thought it was from all the travel and jet lag, maybe some overwhelm too, I didn’t know really. But I’m closer now to what it is. My friend Ib, whom I adore and carry with me in my heart at all moments, helped clarify it for me yesterday. She calls it “weltschmerz” and she said, “it is located in your language of erosion of trust… disappointment… the need to help underscored with a note of (in my ears) not being sure it will work or anyone will listen… I think it is weltschmerz and I think it got in your body like it does for us and made your bones tired.” The “us” she is referring to are all the Autistics who are advocating for change. They are constantly working to change our thinking, our perceptions and the way Autism and Autistics are viewed and treated.
As I read Ib’s explanation I thought of @Coyotetooth who tweets poems in 140 characters or less and photos of his walks. He is one of the many brilliant, kind souls who is quietly making a difference. His post, Unshattered is just one example of his poetry on his blog CoyoteTooth13. His tweets are the ones I try to find first thing in the morning. Sometimes if I’m very lucky I will come upon his and @AspieChap’s conversations, often conducted in rhyme, the best way to begin any morning, it seems to me. Then there’s @Aspie_Warrior who is tweeting and blogging (blog – Aspiewarrior) about what it’s like for him as Dad to AS son and NT family. He writes, “This has led to me working as kind of translator in my household. Kind of a bridge between my NT family and my son.”
@SpectrumScribe with his wonderful blog, Postcards From the Edge of the Spectrum writes about his journey of discovery, revelation, acceptance and self-reconciliation. He has wonderful suggestions for books and film in addition to his terrific posts. There’s @AspieKid whose comments on Emma’s Hope Book have inspired whole posts and who writes on his blog, AspieKid about his life and what it was like for him as a child. There’s Laura Nagle, featured in the wonderful documentary, Vectors of Autism: Laura Nagle and gives one of the best monologues I’ve ever heard about what it is to be Autistic.
There is Amy Sequenzia and Peyton Goddard and Emma Studer, all of whom are nonverbal Autistics communicating through typing and whose words are having an impact. One by one they are changing people’s perceptions of their children and what it means to be a nonverbal Autistic adult in the world. There are countless others and I will try to include them in future posts, but these are all Autistic people who help me understand, who through their kindness help me forgive myself for the mistakes I’ve made, who have helped me do things differently. Maybe they already know they are making a difference or maybe this will come as a surprise, but they are and they have. They have made a difference in my life and by extension in my daughter’s life.
If there is one thing I can do with my writing and with this blog, I hope it is to inspire other parents and organizations to read what Autistics are writing and to interact with Autistic people. If I can have any impact on the organization – icare4autism – it is to persuade them to seek out the advice of Autistics, to hand the microphone over to them and to work closely with them in moving their organization forward. We parents can give each other support and cheer each other on, but it is Autistics who can best advocate for themselves, who can explain to the rest of us what it’s like, who can encourage us to not concentrate on deficits, but on assets and who can show us we are not so different. We are, after all, human, regardless of our neurology. Perhaps it is in sharing our commonalities, rather than our differences that will encourage people, all people to come together to help one another.
I have to end this post with my friend Ib. Ib doesn’t have a blog, but she is a powerful presenter and advocate. She also is my friend, someone who reminds me when I feel discouraged, frustrated, tired or angry that kindness was what changed things for me. Kindness from Autistics who reached out to me and extended their hand not so long ago. E. from the blog The Third Glance was one of the first, and I’ll never forget how much her comment on this blog meant to me. Ib has not only extended her hand to me, but opened her arms in embrace, no matter my mood, no matter my lack of understanding, patiently, lovingly, she has given herself in friendship and I can only hope she feels my love for her in return.
Well said. 😃
Thank you Violet!
It’s worked for me and continues to open my eyes wider every day! Yesterday, I was reading an article about the tragic shootings in Milwaukee over the weekend. The last statement in the article said the shooter was living with his girlfriend and her autistic son. I will admit months ago, my thought process would have been…Oh, she had a son that was autistic and I wonder if he can talk and if he can, I wonder when he started……..etc etc etc….I would have never seen the BIG PICTURE and that was WHY was this even mentioned? Why did that reporter feel it necessary to put that information in an article about a mass shooter/murderer that has absolutely nothing to do with autism, period! To make it worse, it was the very last words in the article so what do you think people were left thinking about….autistic son. Not the tragedy of the shootings, the victims. I was so angry. Again….here we go with giving autism the blame…somehow, someway. Tying it to a story that it had no reason to be included in. I can honestly say before I may not have thought about it like that, at least not intitially. Makes me sad really. Sad and embarrassed that I have been niave. I am so glad to have you and all the bloggers that put their hearts and souls in to making sure we all change our perceptions and we turn the tides of autism awareness to where it needs to be…coming together despite any differences we may have. Sharing our support and understanding for the good of all. ps….love the pictures! 🙂
Interesting that you write about this, Becky. I didn’t see the item you reference, but I did wonder if the word “autism” was going to be uttered by someone regarding the Milwaukee shootings. Why would this be relevant? We don’t hear reporters saying – the shooter lived at home with his girlfriend and neurotypical child. It’s guilt by association. Ridiculous, infuriating and also really, really frightening.
Someone posted on Twitter that a journalist from NBC (I forgot his name) suggested that the shooter was autistic too. It reminds me so much of how any crime committed in the south of the US in the late 19th or early 20th century was blame an black people, and usually a black person went to prison for it regardless of who committed the crime.
I thought the exact same thing when I replied to Becky’s comment. This is a human/civil rights issue. The word “autism” has become so bastardized in the minds of people, it no longer makes any sense, if it in fact ever did. It is incredibly depressing.
Is that Emma’s string she is holding in the picture? Or is it something else she is twirling? I keep meaning to have someone take a video of me spinning poi because I bet Emma, and also Leah’s son H, would love it. Lots of autistic kids would love it, for the same reasons I do.
Yes! It’s her, relatively, new string. She abandoned the other one about a month ago in favor of this new lighter one. She twirls it around and around and I believe helps her focus. I want to see a video of you spinning poi! I love that.
((((((Ariane)))))) Love love love!
And yes vote for videos of of poi spinning!
Let us band together with all the other people bullies bully, and all our allies and the allies of the other people bullies bully, and make a giant majority.
I do not want to have weltschmerz; I want to have peaceful happy victory.
Me too, Ib and in the meantime, you make me happy!
PS I am really glad your blog turns me into an icon with such a sproingy base to bounce on, because I was about to be a bit envious of that giant trampoline Em has there. But the twirly spring is clearly quite boingy, so I’m contented. xx
Maybe she’ll let you borrow it. She let me have it for a few golden moments, before whisking it away again. It was magical. Here’s to poi spinning!
Love to you!
Love to you too, Amy! Thank you for writing and sharing with the world. Your words are making a difference!! ❤
Hi Ariane! Emma was so overwhelmed when I showed her this post of yours. She wrote you an email with a wrong address! Hopefully you have received it by now. The paper by the Markhams’ so inspired my daughter. Hope comes in many, many forms…. Emmashope, my emmas hope….
Paige! So happy to hear that. I’m going to go look for her email now, I LOVE her emails to me. They, literally, make me want to jump up and down with excitement!!
I read this article soon after you published it and I felt such a deep appreciation for you. I also felt a sympathy, too. I liked Ib, and what she said:
“My friend Ib, whom I adore and carry with me in my heart at all moments, helped clarify it for me yesterday. She calls it “weltschmerz” and she said, “it is located in your language of erosion of trust… disappointment… the need to help underscored with a note of (in my ears) not being sure it will work or anyone will listen… I think it is weltschmerz and I think it got in your body like it does for us and made your bones tired.”
This post stuck with me, but I just couldn’t find the words for an adequate response. After a few days in my brain, it came to me in a post I’ve been trying to write since father’s day:
I still don’t know how to put into word what I wish to say, but underlying it all is, “Thank you.” Please know that your work and the work of others to promote autism acceptance and understanding is deeply valued by my family and peers. In a generation, the swaths we cut will clear the view for respectful and informed public opinion of autistics.
Lori – thank you so much for saying this. I just read the link to your post. Loved it. I look forward to seeing an email that tells me you’ve written another post. I look forward to clicking on your latest and reading whatever little snippet you’ve chosen to share with the rest of us.
I am honored that anything I write might inspire anyone’s post, but particularly one as beautiful as yours.
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