How Do You Talk to a Nonverbal Person with Autism?


 Guest Post
By Tracy Kedar (my mom)
“High five, Ido,” the earnest young woman said, greeting my son for the first time as they were about to work together. “Uh-oh,” I thought, “bad start.” “Good job. High five,” she said to him over and over.
Ido has nonverbal autism and can’t speak. At that moment, due to the nature of the activity, he did not have immediate access to his letterboard or iPad, so he had no means to tell the nice, well-meaning young woman that he hates being told, “high five,” and “good job,” and that he hates being spoken to as if he were three (he is seventeen), and to please talk normally to him.
I thought, “Okay, say something now before this becomes a pattern and he becomes insulted.” As tactfully as I could, I mentioned to her that Ido doesn’t like “high five.” He wants to be spoken to normally. “But this is how I talk to everyone,” she replied.
Really? She goes to a party, walks up to her friend, or the attractive young man she wants to meet, lifts her palm and says, “high five” in that particular tone of voice?  She palm-slaps friends she passes at work, the cashier in the market, her doctor? I didn’t think so. Perhaps if she hung out exclusively with two year olds she talked to everyone like this. Otherwise, let’s assume she gives people with autism or other special needs, special communication. 
My son, Ido Kedar, is a high school junior, and despite his severe nonverbal autism, he is the author of a book, Ido in Autismland; Climbing Out of Autism’s Silent Prison, is a blogger, is an honors fulltime general education high school student, and is a frequent guest lecturer at universities and autism conferences. His vocabulary is huge, his intellect, fully intact.
Knowing this, or even a small bit of this, I had to wonder, why would anyone talk to Ido in this infantile manner? Why talk to anybodylike this? The answer is that many people with special education training have been programmed to believe that autistic people need speech broken down to simple components to help deal with the assumed receptive language or cognitive delay. Talking in this way is deeply habituated for many people who assume it is the right thing to do for every person with special needs. Otherwise, why say, “high five, good job,” instead of, “excellent effort. That was outstanding.” Hear the difference? Autistic people do too.
Recently, Ido had an unexpected encounter with a professional who spoke to him like this; “He knows I know he’s smart, right, bud? We’ve got a thing, right, bud?” Enduring a situation he found pointless and patronizing and which pulled him away from an academic class which mattered to him, Ido stewed and finally replied as an irate teenager would and typed, “F—  this.”
The question is, would this professional talk to any other high school student like this, let alone a high achieving honors student? We all know the answer is no. Professionals too often talk aboutthe person (“He knows…”) and not tothe person (“You know…”).  They talk in childish tones and reduced vocabulary. The message is, “I say I know you’re smart but I treat you like I think you’re not.” To which Ido says, “Enough!”
In his book, Ido inAutismland, Ido wrote in his essay, How I Would Have Liked to Have Been Taught,
If I could educate the specialists, the first thing I’d recommend is to talk normally to autistic kids. No more, “Go car,” “Close door,” “Hands quiet,” or the like. It’s stupid to talk this way. Some teachers used tones to make words more distinct or over-enunciated sounds, like “letter” made with a “t” sound, not a “d” sound like we use in America. They sounded so silly I often rolled my eyes inside. (p 55)
When Ido was little, before he could type and we didn’t know what was locked inside, we used to speak to him in this simplified way, as we had been instructed to by autism professionals. We went through a terrible episode when he was small when he grunted continuously every few seconds all day long. He couldn’t stop and we tried all the traditional behavioral techniques of extinction, or telling him, “no,” or “mouth quiet,” to no avail. Finally, in desperation, I told him in totally normal language before a car drive that his grunting was distracting to me while I drove and I told him that he needed to make every effort to not do it for the duration of the drive. To my amazement, he did. From that point on, even before he had communication output, I gave him the benefit of the doubt and the respect of normal communication input.
Regularly, Ido gets letters from parents telling him that they now speak normally to their child with autism, thanks to his advice, and that their child is responding positively. Ido has asked professionals to ponder, if you had duct tape over your mouth and around your hands, would that mean you couldn’t understand speech? How would you like people to talk to you if you were in that situation? How do you talk to a nonverbal autistic person?

7 Responses to How Do You Talk to a Nonverbal Person with Autism?

  1. Hi Ido Hi Tracy ! i’m Laurence , a french mon of a non verbal boy aged 14 ; Ido you’re so inspiring , thanks for all you do for all the “silent fighters;
    My son , Nicolas types too but the way people stare at him, speak to him babytalk is very hard to him ,As Tito mukhophodhay said ” school is the doubt in your eye ” ,our kids need to prove their intelligence to anyone they meet; ,It seems to never end. Thanks to try to change that;

  2. Thank you for sharing this. I try to explain this to family members, doctors, etc.

  3. Ido – Thank you so much for your book. While reading it, I realized that I may have heard you at a Vista del Mar conference 3 years ago. I have given your book to previous ABA therapists to try and educate them. There are many similarities between you and my older son, Alex. Alex taught himself how to read and we discovered this in Jan. He also seemed to forget about washing his right hand in the past. I have 2 boys on the spectrum, ages 3 and 5. I am the kooky mom that does lots of alternative therapies. I avoided ABA for 3 years until I decided this year to get over my ABA aversion and give it a try for Alex. I have always wondered how my boys feel during their therapies. My boys have done Neuro-fit (I think similar to your exercise program) and now they are doing neurological reorganization and Mendability. Have you done any of those therapies in the past?0
    I am also including 2 links that are interesting – the study published on sensory enrichment therapy (which is Mendability) and a Ted talk given by a dad and his daughter who did Mendability for 1.5 yrs at age 8:

    http://www.apa.org/pubs/journals/releases/bne-127-4-487.pdf

    http://www.youtube.com/watch?v=D40kpklZ9ic

    Mendability has been studied in kids with autism – it has also been used in people with ADHD, cerebral palsy, anxiety, Down’s syndrome, depression, dementia, and Parkinson’s.
    The Mendability staff will be in town at the end of this month attending the HELP Group Summit Conference and will be having 2 meetups for parents doing Mendability and for anyone who is interested.

    - ANAHEIM: Thursday, October 24th, 7 – 9 PM
    https://www.facebook.com/Mendability/posts/562420433806251
    Graciously hosted by DEB Construction in their conference room
    2230 E Winston Rd, Anaheim, CA 92806

    - SHERMAN OAKS: Saturday, October 26th, 2 – 4 PM
    https://www.facebook.com/Mendability/posts/562426243805670
    Hampton Inn – Meeting Room
    5638 Sepulveda Blvd., Sherman Oaks, Ca 91411

    My boys have been doing this sensory enrichment therapy since the beginning of May. Big A (almost 6) has just finally started pooping in the toilet 2 weeks ago! Yay!! He is becoming more verbal and demonstrating an understanding of what’s going on around him. I think he always understood but it’s more clear now by the way he responds to us. Yesterday I made some Chinese noodles with ground turkey – he popped some turkey in his mouth and said, “Good” – then kept eating. His response was very approving as if, “hmm – there’s flavor!” – since I tend to cook very blandly :) We are starting to see more and more joint attention. Little A (age 3) is doing very well with potty training, making word approximations, pointing up a storm and expanding his pretend play. I wrote a blurb about our experience for the first 5 weeks for another parent that is on the testimonials section of the Mendability website. The sensory input helps to balance out serotonin and dopamine levels. It’s nice that you don’t have to take a pill. There are several short exercises/games that have to be done throughout the day – for a total of about 30min a day.

    I just thought you might find it interesting. Hope your week is going well!

    Judy Cheng

  4. Hi Ido (and Tracy)
    I have enjoyed your book as well.

    I think a lot of people think nonverbal = poor comprehension. They couldn’t be more wrong. I have a friend who is nonverbal and very shy (so doesn’t seem to respond at times) and some people think she doesn’t understand what people say, but she does.

  5. Hi Ido,

    I have just received your excellent book from Amazon and I am really learning a lot. I have always believed that my non-verbal, autistic son is extremely smart, but because I am his mother, “professionals” (note the inverted commas to indicate my sarcasm!) just thought I was in denial about the disability. It has been so difficult trying to convince them that he needs to learn some kind of communication.

    Thanks to you, and the other “silent fighters”, whose books and blogs I have also been reading, I now have clear evidence that there is so much more to my son than meets the eye. You have given me the courage to keep up the fight, and for that I am very gratefu

    Tracy, as a mother, what can I say? You have my admiration. High five! ;)

  6. Hi Thank you for this I completely agree. My son Alex used to get upset every time his teacher said, “good boy.” He says now he hated being patronised. He preferred, “you did that work well.” My son has a website/blog would you or Ido consider writing a guest post. The website is http://www.alexlowery.co.uk

  7. Dear Ido,
    Thank you so much for writing your book. It’s an honor to be able to read your blog and watch your videos. Thank you for letting us into your life, so we can understand our children just a little bit better. Props to your mother and father. Your mother wrote a beautiful intro in your book and at one point, she was describing our life to a “T”. My 4 year old is fairly nonverbal and I have always known that there is so much going on inside his mind. You have inspired me to broaden his horizons (beyond PECS) and I am looking into RPM. I have bought several copies of your book and am giving them out to my family, friends, and my son’s teacher and team members.
    All my best and thank you so much.
    Sincerely,
    Angie Silva and Family :) (written under my husband’s account – woopsy)

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