Communication, anxiety and neurological instability.

One of the big complaints of skeptics who refuse to believe nonverbal people with autism can communicate is about support. They have significant doubts if anyone receives tactile support. In fact, if anyone receives tactile support they are sure the communication is fake. I think, to be fair, that sometimes it is hard to tell how much is the autistic person and how much is the aide, just by looking, but sometimes it is quite obvious that the support is just there for emotional support or anxiety control. It is minimal, a light touch far from the hand or arm and totally not prompting movement. My good friend likes a hand on his shoulder when he types. It gives him stability. If someone put a hand on your shoulder could you write accurately in a language you don’t understand but the other person could? I doubt it, but try and see if it’s possible.

But skeptics aren’t even satisfied with independent typing. I type with no tactile support, no prompts at all except for a reminder to keep going or to pay attention if I get distracted or pause too long. Still skeptics are concerned that someone sits a foot away from me and imagine that through some magical means I am typing their thoughts. If I was alone in the room, they say, then they could believe I was really typing my own thoughts.

I am somewhat fed up with this because they do not understand the nature of neurological instability and anxiety in autism. They have an innate bias in believing that autistic minds are not capable of understanding language. If that’s so, why bother to drill us with flashcards?

How many times have nonverbal people emerged from an inability to communicate, often due to a body movement problem, to show that they were hearing and understanding all along but were trapped and unable to show it?

My father, who is a scientist, talked about the unknown impact of emotional support on anxiety and performance and he shared the example of King George in the film, The King’s Speech. King George suffered from a terrible stutter. He was unable to speak in public without stuttering and stammering continuously and with great anxiety and humiliation. Forced to become king when his brother abdicated the throne, George had to overcome his speaking problems to deliver speeches to the British people as Britain entered World War II and to help keep up their morale throughout the war.

His speech therapist, Lionel Logue, was always with him when he spoke to provide emotional support. He never left the room. So, looking at the situation skeptically, should we say that the king lacked the ability to deliver speeches and was Lionel Logue’s puppet? If judged by the same standard as people with autism who type, perhaps we can determine that he was not capable.

Let’s keep an open mind.

19 responses to “Communication, anxiety and neurological instability.

  1. Dear Ido, You are a hoot.
    Thank God for hoots.
    I think you should not waste your time trying to communicate your theory to the diehards. They are “outside of communication.” Basically they are stuck. I run into this problem in my field and I have by now ceased to try. (Different issue from yours.)
    Sure, we see that you are devoted to helping others by getting your message across, but the flash-card set is just not going to budge.
    I love your example of the foreign language. I’d like to conquer Chinese that way. Just hire a ‘toucher’ and I’m off.

  2. A major problem is that many of the skeptics are university professors who are teaching their students, writing in peer-reviewed journals and consulting that communication through typing is not real, whether it is called FC, RPM or the use of an ipad. My own soon to be 43 year-old son Ben has a wonderful adult life using his type of FC but I am saddened by so many others who are denied such opportunities to communicate and control their own lives. I am committed to “good scientific research” and I invite Ido and others to join my son and me in our efforts.

    • Consider visiting the 2016 Rethinking Autism Conference to experience the joy and freedom that comes from being understood and recognized as a thinking person, despite movement differences and apraxia. autism.optimalrhythms.org

  3. Very well explained Ido !!!

  4. Ido, thank you. Your book had a tremendous impact on me. I have two children, both autistic. My son is 11 and verbal, my daughter is 6 and nonverbal. My daughter got her speech device about 7 months ago and is doing amazing with it. Your story helped me articulate what I knew was true about daughter, and gave me courage to keep fighting even when insurance denied her device TWICE. I got my state senator involved and with his help, we got insurance to cover it. Thank you for sharing your story and helping others believe in the power of communication, whatever form it takes. We cannot allow the skeptics drown out the voices of others…the skeptics are simply afraid to listen to voices that do not sound like their own. They are afraid to hear the truth. Keep speaking the truth Ido!

    • hello hope,

      my son Joseph is 6-1/2, and non-verbal. could you please tell me what speech devise you referring? thnx, Joe G.

      • Joseph,

        My daughter has a Novachat 10, manufacturer is PRC…Prentke Romich Company… http://www.prentrom.com/ it’s installed on a dedicated Samsung tablet (meaning there are no other programs on the tablet, just the speech device. we did this so she would not be distracted by other online games, etc…she has another device for play 🙂 About a year prior to getting the Novachat, she worked on other devices as well…an Accent mostly. I like the Novachat much better than the Accent for editing and adding buttons…you can take pictures with the tablet and add them to the device very easily. My daughter started communicating with PECS when she was 3. We also use some sign language. We worked with her speech therapist, assistive technology staff (provided by her school district) and her pediatrician to pull together all the required documentation and medical necessity documentation. Took two tries and 5 months, but we did it! The device goes with her everywhere 🙂 It has been wonderful to hear her voice! Good luck!

  5. Hi Ido, Once again you inspire and educate us! Great post. It inspired my own Monday pleads to professionals and parents where I quote you from your book.

    http://www.thevisibleparent.com/tuning-in-to-the-emotional-lives-of-children-with-special-needs/

    Thank you for teaching us, this wave is growing!

  6. Absolutely correct. I’ll be linking to this the next time someone gives me grief about FC or nonverbal communication, as it’s very well explained.

  7. I think what your doing is really amazing and i canr imagine how hard and long of a journey this has been for you. I was so amazed and moved when I read your book and I love to follow your blogs and other comments. Don’t ever let anyone tell you otherwise. Like any movement, it takes time, dedication, and a deep passion for what you believe in to make a difference. I believe you’ve already created that for so many parents and some professionals and I believe you will continue to do. Great work and I hope life can only get better for you and your goals.

  8. great analogy with King George, Ido!

  9. You are doing important work by sharing your story and struggle. Please don’t get frustrated because your efforts are appreciated by so many people who are not yet able to speak for themselves. Thank you!

  10. thank you.

  11. Dear Ido…I SAW YOU FOR THE FIRST TIME JUST YESTERDAY AND I CANT WAIT TO GET YOUR BOOK!…MY SON HAS AUTISM, “BUBBA” ( JOSHUA)- CAN SAY SEVERAL WORDS BUT GETS SO UPSET WITH HIMSELF WHEN HE JUST CANNOT GET A WORD OR PHRASE OUT THAT HE HITS HIMSELF!-I WOULD LOVE TO ASK YOU SO MANY THINGS ABOUT HOW/WHY/WHAT I CAN DO TO HELP BUBBA “FIND HIS VOICE”-WE HAVE 2-APPS NOW ..’LEARNTOTALK’–&–MOST RECENTLY…’PROLOQUO2GO’…&–I AM TRYING TO HELP HIM WITH THESE BUT HE SEEMS TO HAVE LITTLE TO NO INTEREST IN THEM
    ILL BE ORDERING YOUR BOOK TODAY SO THAT I CAN TRY TO SEE IF YOU HAVE ANYTHING “NEW” I CAN TRY/USE TO HELP HIM..
    ALSO-I PURCHASED THE BRAINCHILD NUTRITIONALS SYSTEM…&…SO FAR–NO LUCK…IT HAS ONLY HELPED HIS “BOWEL-PROBLEM”–STILL..NO VOICE LIKE THE ADS SAY…PLEASE KEEP UP THE GOOD WORK AS YOU ARE PROOF THAT OUR CHILDREN DO UNDERSTAND US AMD I TRULY KNOW FOR A FACT THAT BUBBA IS “IN THERE”–&-TEYING SO DESPERATELY TO FIND THE FREEDOM YOU SPOKE OF!
    May God bless you dearly!!
    Tammy, Bubba & ALL families of our children*

  12. so do speaking autistics. It’s an illusion to think that because we are articulate under perfect circumstances, that we never need communication support. Our language can shut down, be ineffective or the context can result in abuse and manipulation. All autistics are deserving of this.

  13. hi ido,
    everyone talks about visual timetables as a way to help kids with autism cope with anxiety. i’m a teacher working with elementary school kids and find for some of my students who are a lot like you a visual timetable really stresses them (try convincing the ‘experts’ about this – i feel i’m fighting a losing battle sometimes). do you find having a visual timetable helpful or not?

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