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.

10 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❤️❤️❤️

  4. Thank you, as always for your voice, Ido.

    I looked up the source of the 2nd video – ASHA. Their mission is:
    Empowering and supporting audiologists, speech-language pathologists, and speech, language, and hearing scientists through:

    advancing science,
    setting standards,
    fostering excellence in professional practice, and
    advocating for members and those they serve.

    “Those they serve” sounds like an ad on stuck on as an afterthought and is the only mention of us and clearly points out that we (and those like us) are not in a position of leadership in determining what appropriate services are needed by us.

    I’m sorry that you are experiencing push back and attempts at silencing and discrediting your “voice”.

    Your perspective is needed Ido. May it be honoured by the “professionals” in your lifetime. In the meantime it is deeply honoured by your fella Autists. <3

  5. I have started letter boarding with my son who is 8 years old and non-verbal. I know he is intelligent because he could write a 3.5 years old (but hasn’t written with me in several years). He isn’t making progress on the letter board, even though we have been at it for quite some time. We are unfortunately far away from any RPM practitioner. The closest is 3 hours away (one way), which my husband says it too far because it breaks Lucas’ routine. I have tried to send videos of my teaching Lucas to RPM experts, but this has also not helped. I am desperate to help my son, but I feel trapped. We are not making progress, his father thinks I am chasing a fantasy, and I am not sure what to do. We have tried to many things to help our son and we are tired. How do you think that I can convince my husband that RPM isn’t just another gimmick?

    • Hi Mariah,
      Your letter is heart breaking. The problem is the process of instruction is tricky and good instructors have a lot of skills to deal with challenges. The 3 hour drive way be worth it for an overnight stay and a few consecutive days of instruction, followed by exercises you do at home with your son, then a return visit months later. If you don’t mind my asking, what state are you from?
      If you can make some preliminary changes, this may help too. Talk normally to your son, read him interesting, grade level books, show him you know he is smart. If you try to use letter board with him, remember he is learning to look (visually scan) and move his hand correctly. Both of these may be really difficult for him and are skills he has to learn. Try not to get frustrated, emotional or impatient during your lessons because he will shut down.
      Feel free to contact us again with questions.

  6. The first video melted away my heart and opened my soul, the second made my skin crawl and my pooper pucker up :p Oh my goodness, how full of themselves are these ladies with their empty hollow words and scaremongering of harm. Of course their members are concerned… about their livelihood and rigid ways of structuring their profession. What you said in an interview is so true: this total lack of interest and curiosity is astounding and appaling.

    There is a Buddhist story about a man who lost his wife and put all his heart and soul into his surviving young son. One day, when he was away on business, bandits came, burned down the village and kidnapped the young boy for a slave. The man was overcome with sorrow. He collected the ashes from what he thought were the remains of his son and kept them in a silk purse at his heart, and cried and wailed each night.

    One night, the boy managed to escape and found his way back to his father’s home. He knocked on the door: Father, its me, I’ve come home. The man thought a mean boy or vicious spirit was playing a trick on him, and yelled at him to go away and leave him in his grief. Again the boy knocked, pleaded. But the man clutched at his silk purse with the ashes, and howllored at the boy to go away and leave him alone.

    After many hours, the boy gave up and went away. The father never saw his son back, because he was so convinced of the truth he himself had created that he could not recognize the actual truth, even when it came knocking on his door. That story is what these people remind me off.

    Hopefully there will be no stopping of knocking on their doors, until we’ve broken them down!

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