Silent Advocates

I am happy to let you know about two new books that rely on the writings of autistic typers to understand autism. Professor Edlyn Pena of Cal Lutheran University has edited two compilations of essays, one more scholarly and in-depth, the other using more contributors, but briefer. I have contributed my two cents to both books.
Last weekend people came to Cal Lutheran University for a conference celebrating the books’ publications and met with eight of the ten contributors to Communication Alternatives. It was a happy day seeing the changes in attitude and recognition since I started on my typing journey.
I hope this film from the conference will move you. Our messages are honest and truthful. They are also messages from autistic people themselves.

I hate to be a pain, but I felt I must juxtapose the last film with this one. This is what we are up against. Who do you trust to understand autism better?

No more talking about us without us.

6 responses to “Silent Advocates

  1. Hello Ido,

    My daughter is 4. Diagnosis-autism
    I just finished your novel “in 2 worlds” and quite frankly I am amazed at my own intuition for my daughter as your book confirmed everything I was sensing with her.

    Although she is not totally silenced, she has trouble answering questions, asking questions with curiosity and trouble with “I” , “me” , “my”
    She waves backwards stimming and makes many odd sounds, she loves to sing and dance, spin jump and swing. She gets really close to screens with her favorite cartoons and likes anything with interesting lights and sparkle.

    Can you help me understand what wakes my child in the night? She usually has no problem getting to sleep but will wake in the night and be awake for 3-5 hours. I am a single mother with no help on welfare and I want to help us sleep better so I can function and make an income so we can survive.

    I have taken my daughter out of early intervention and she is no longer in speech or OT… We never tried ABA because I didn’t agree with the “treating” method, my child is not a dog to be trained, she is a vast soul and autism is a tiny piece of her vastness. I found that the special education was regressing her, she had more meltdowns, she was bored. I can sense her entrapment feeling and her want to communicate, I am sure I miss quite a bit but I get some cues too. I am interested in the typing method you used, how do I find a reliable practicioner? Also, I am putting her in neurofeedback therapy, how do you feel this will be for her?

    I have always known that it was her mind somehow NOT connecting to her body, mind not communicating with her body, her speech. The freezing factor of the nervous system, do you think meditation would be beneficial to you? I use Jeff Foster’s method of breathing into these chaotic freezing moments, leaning into them, instead of resisting and fighting and beating myself up for reactions and lashing out, I am wondering if the same method would be useful and beneficial to calming my daughter’s wild nervous system. How can I help my daughter breathe to regulate herself? Open to all your suggestions!

    Thank you so very much for writing your books, I plan to get your memoir when I can. You speak for so many, I hope your methods and knowledge end up in schools one day. Deepest gratitude to you 🙇🏻‍♀️❤️

    • The availability of practitioners is limited but I think you can read on it and watch some online stuff.more will be available in the coming months. I have 2 old guest posts from 2017 called Typing to Communicate. Check those out too. Your daughter is lucky to have you be so aware.
      I don’t know why she is up in the night. Many autistic people have messed up sleep cycles. Maybe a medical evaluation can help.

    • Hiya Mama, 50 yo Autist here. As Ido says our sleep cycles are messed up…or perhaps they are wildly different and we don’t know how to map them yet. I know that I have had life-long sleep difficulties and I can’t wait till there is more and appropriate help for us.

      In the meantime, speaking for myself and the other Autists I have discussed this with…our sleep landscape is vibrant, detailed and overwhelming with feelings/images/sensations/processes. I wake often in the night from overwhelming dreams…not necessarily nightmares. Also, I don’t seem to sleep as deeply as others. I wake often through the night and my racing brain and/or those damn dreams keep me from falling back asleep.

  2. Thank you for telling us about these books Ido. I ordered them immediately, as I’m such a fangirl!

    I was worried they wouldn’t be available in the Uk but they are. They arrived this morning,. I opened ‘Leaders around me’, looked at all the names, so many names, and to my surprise I burst into tears. Maybe it was an awareness of how many people they represent who have not been given an opportunity to communicate for themselves. Maybe it was the feeling that the tipping point is coming and the old model of autism is starting to be called into question. I don’t know. But it’s just so so important.i know I’ll be reading bits to my son (8, non speaking, but letterboarding and now typing a little too). It’s so important he knows he’s not alone on his journey. Which may be another reason for the tears. When I’ve calmed down a bit I will actually read the book!

    • I agree the tipping point is getting closer. Lots more typers, fed up parents and the power of truth. Long way to go but we’re on our way.

  3. Thank you for helping me understand my child! The compassion comes easy with understanding❤️❤️❤️

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