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.