“Barb Doesn’t Talk” ~ Emma

I have a friend who, when they met over a year ago, Emma observed, “Barb doesn’t talk“.  “Doesn’t talk” means she doesn’t talk with her mouth to communicate the way she can and does when writing.  Her name is Barb Rentenbach and she and her therapist, Lois Prislovsky wrote a book, I Might Be You.  I’ve written about Barb and Lois before, ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  If you haven’t read their book, you must.  (Continue reading for a surprise later in this post about that book.)

I met Barb at the Autcom Conference in 2012 and though I didn’t know it at the time, Barb and Lois  would have an enormous impact on me that was far-reaching.  You see, it was because of Larry Bissonnette, Tracy Thresher, a boy I saw writing to communicate, and finally Barb, all of whom I met at the Autcom Conference, that I began looking into other ways for my daughter to communicate.  (You can read more about the process by clicking “How We Got Here“.)  Even though Emma can and does use her voice to speak, she has described her attempts to communicate with spoken language as, “I can’t talk the way I think.”  Later Emma wrote, “Please remember that my mind tells my body and my mouth to do all sorts of wonderful things constantly, but they don’t obey.”

In Barb’s most recent blog post (I urge everyone to read it) – Open Hearted Letter Quilt to Andrew Solomon –  she writes about autism, empathy, and how autistic people are often misunderstood:

“It’s like Saxe’s (1873) poem, “The Blindmen and the Elephant” where each blind man is partly in the right as he describes an elephant piece he studies, but all are in the wrong in knowing an elephant.

This autistic pachyderm will expand perceptions by presenting more pieces.”

Barb goes on to describe herself, “I don’t look normal.  I appear quite messed up and a prime candidate for nothing but pity and patronization, with a sprinkling of repulsion and fear.  I am disguised as a poor thinker.”

Still further along she quotes Emma:

“To quote my mentor Emma who is 12 (This old dog is all about learning new tricks) who wrote this by saying each letter aloud she pointed to it on a stencil board, “Autism is not what parents want to hear, but I hope that will change as more people get to know someone like me.”

This short video shows Barb typing just a few days ago.

Now there are some people who have suggested Barb is not typing on her own.  They believe that the person whose two fingers are tentatively touching her back are actually guiding her and that it is their voice and not hers that we are reading. This is a video of Barb writing four months ago…

And here is a video of Barb typing in 2011…

I am showing you these clips so you can see Barb’s obvious progress and please note, Barb is not a child.  I know that’s obvious, but it seems many people forget this or have trouble believing that people of all ages can and do progress.  Just as Barb works hard to become more independent while typing, so does my daughter.  Emma’s way of writing is slightly different in that no one is physically touching her and she points to letters on a letter board,  but she is working hard to move from pointing to the stencil letter board to the laminated letter board to a qwerty keyboard, with the eventual goal – being able to type on a computer regardless of who might be seated nearby.

As all these videos show, none of this is easy.  Barb is working hard and so is Emma.  Some days go more smoothly than others.  As Barb writes –

“I often politely ask my brain to please move my hand to do this or that only to be told, “We’re sorry due to high autism volume we are not able to answer your call at this time.  Please try harder later.”

For any of you who would like to have a hard cover copy of Barb and Lois’ terrific book, I Might Be You, I am giving away five hard cover copies.  Please comment below, saying something about yourself and why this book is of interest.  I will place all comments into a hat and will choose five at random.  If your comment is chosen I will contact you, via the email you use to comment, for your street address, where I will send you your copy of Barb and Lois’ MUST READ book at no cost to you and in appreciation to Barb, Lois and Emma for their hard work in bringing much-needed awareness to all who are like Barb and my daughter!

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Barb Rentenbach and Lois Prislovsky

 

 

 

35 responses to ““Barb Doesn’t Talk” ~ Emma

  1. I have a 15 year old nephew who is autistic. I am always looking to learn more about autism especially from those work first hand knowledge!

  2. Hi! I’m a grad student working on my doctorate in clinical psychology. I started reading blogs years ago because I feel like I learn so much more from real stories than I do from lectures in the classroom. Reading your blog has really helped me challenge many of my assumptions about autism and communication in general, and I so appreciate you and your family sharing parts of your lives with me. Anyway, I would love to read a copy of this book. I’ve wanted to buy it for a while actually, but there’s no breathing room in my student budget for buying nonessentials. Sigh.

  3. I have a grandson who has autism. He has many words, but he can’t converse. I know he is smart. I talk to him as though he understands and time and again; he proves he does. I think he could learn to communicate like Emma or Barb, but my daughter has him in a “program” with ABA and other tutors. The more I can learn and pass along to her, the better the chance that my grandson will get what he needs to really converse.

  4. I find all of your posts so interesting! I love to read what Emma has to say. And any links you post I find helpful. My daughter is also named Emma and she has Autism. She I’d considered “high-functioning” as she is able to verbalize well. But she still has trouble getting her thoughts across.

  5. My 8 year old son is autistic. “High-functioning” as some like to say–a description that comes with its own set of baggage. Most people interpret this as more “normal.” I know that I unthinkingly place some of those same expectations on J, quite unfairly. Because he can do so many things, I assume it’s simply a matter of focusing or trying harder. J has a beautiful mind, and many of the things Emma says remind me of him and the way he thinks. He’s funny and gregarious and compassionate. My best teacher. I want to always know him better. I want to learn what works for him, and what doesn’t.

    • I have one of each Jennifer and in some ways i think its just as hard or harder on my older Aspie son…he has way too much pressure put on him because he “seems fine” and is so smart. My baby will have the opposite problem of being underestimated, but having found the community when he was just short of 3 he is growing up with at least a few ppl in his corner seeing past his difficulties…I’m hoping thats enough.

  6. Michelle Gregor

    I would like to add this to the professional library at the school where I work. I have been learning so much, after 15 years in the field of autism, and I look forward to learning more. Whatever I can do to expand options for the students I come into contact with, I will. Thank you for sharing your story, and opening my eyes!

  7. My 7 year old daughter is non-verbal. I’m recently understanding that her mind is nothing like what “they” say it is in reports. I’ve always felt this way in my gut but couldn’t express it. I now know and shout out loud that my gut is right. I’ve changed who I follow and have learned so much from autistic people. The more I read and understand a different way to communicate the more fuel I have to continue working with my daughter. Thank you for sharing your experience it’s helped me and my family tremendously.

  8. Katrina, (we call her “Nikki” for short) and I would like to read the book because Nikki and Barb have something in common. They are both adults and they both like to be touched while they are typing. Thank you. If we don’t get picked for the free book, we will probably try to get it anyway. 🙂

  9. Lol well you know this momma wants it…both for myself and to pass along to mom, who despite my best efforts still doesnt “get” it. As far as about myself although im loudmouth here enough you prob already know. Im a single mom to two autistic boys 15&4. My 4yr old is nonspeaking and smart as crap…on a mission with ya to get ppl to look beyond the exterior.

  10. As someone who found out about my own neurodivergence as an adult, I am always trying to learn about other people’s stories. I find they help me develop a better understanding of myself and aid in the process of changing how I view my differences to a more positive light.

  11. Laurie Bernstein

    I have an 11 year old son who has been learning RPM for more than two years now. My discovery of Soma and RPM happened through the miracle of Amazon when I recieved one of those emails that says, “based on previous purchases you may also be intersted in…” The book was Strange Son by Portia Iverson. I ordered it. It wasn’t till years later I had the courage to sign up for a camp session, that changed everything. The point is that these personal stories really change lives. I hope I’m one of the lucky ones to get a copy of the book.

  12. “I can’t talk the way I think”

    AHA! Finally it is in words!!!!
    I have a Ph.D. from Columbia University and an honors double-majored undergraduate degree (Bryn Mawr) but have always felt I barely got through any kind of class participation. I am currently a professor and am able to do a fairly good (I hope!) job of teaching with highly scripted outlines. But, seriously? Talking in c;lass was a HUGE struggle for me.
    And let’s not even get into having conversations with loved ones about feelings (which – feelings – i have a LOT of!).

    Now, having learned my son is very much a non-verbal processor (among many other things 😉 ), this will add to our repertoire of tools.

    This phrase will resonate with us for a long time. Thank you so much, Emma and Ariane!
    Love

  13. I am on currently on the similar path with my Sophie. She is only shy of 4 but she is so wonderful and we are deeply connected. I am working with her on an aac app (speak for yourself) to give her a means of communicating. She is starting to really pick it up! I have no doubt as to her intelligence. The more I can understand her feelings and perceptions, the more I am able to support her meaningfully. I would love to read the book, and would be thrilled to win it 🙂

  14. I love the phrase “high autism volume” for why it might be difficult to do something. I would be interested in this book because we are using RPM with Nathan and I like to keep seeking out different methods of communication. Also, the more I read about adults and older children on the spectrum (from their own words) the better I can understand my son.

  15. inspiring generosity is a feeling best shared. grateful b

  16. I am a mother to two autistic boys. My youngest son was non-verbal for the first 6 years of his life. He attends a special needs school and I would like to introduce this book as an educational tool to the teachers and aides and demonstrate how imperative it is to find different methods of communication for non-verbal children. Because as parents of non-verbal autistic children, we know fully well that not speaking does not mean not having anything to say. Thank you.

  17. I would love to read this book! I’m still at the start with my young son, trying to figure out how to get where you are. And I am always trying to share our journey and new knowledge with family and friends to slowly change the worlds perceptions about autism. I feel I am! And I started an autism (local) group that is growing fast, connecting families and we are teaching each other how to thrive and trust. My life has autism in every thread. I love learning that the old scholars were wrong. Autism is finally coming into the light because of your daughter and these other inspiring people who are sharing their insight and their truth! Technology has allowed them to be heard finally!!! I will share this truth for the rest of my days. And One day my son will write to me and tell me all his thoughts…I’m certain of that now.

  18. I have a very intelligent son who may or may not be on the spectrum. We get the services we need with the ADHD diagnosis, so decided not to put him through autism testing. My son is doing very well now and we hope to mainstream him in a year or so, but during a horrible year and a half in which he was “disenrolled” (i.e. Kicked out) from two preschools, I started learning as much information about ADHD and autism as I could. None of it brought me to RPM. Watching “A mother’s courage” on Netflix was the kick in the head that changed everything…not for my son, but for me. I am in the midst of a career crisis because of it. News at 11…

  19. I would love to have this book to read and share with my fellow instructors and staff. We are a therapeutic riding program, and the majority of our students have Autism or are non-verbal for other reasons. I love this blog, because you not only provide your & Emma’s perspective, but also a lot of great resources. Thank you!

  20. I have a 3 year old Autistic Grandson, whom I love dearly and I know he is super intelligent. Any approach to help us understand his wants and needs is the only thing I want. I love Emma.

  21. I’m a speech-language pathologist, so my career is helping children (and their families) learn to communicate more effectively. I stumbled across this blog several months ago and it has really changed my approach with some of my clients and inspired me to really dig in and find any way to help make communication happen, whether via speech or a different means. I’ve purchased and read several of the books recommended on this blog, but have not yet read this one. I would greatly appreciate gaining the perspective of another individual who communicates so beautifully, but does not speak.

  22. Kathy Quoyeser

    I would love to read Barb’ s book to help my son.

  23. A ginormous light bulb went off when I read “I can’t talk the way I think.” I believe this for my autistic son… I believe this for my neuro-typical self as well. I’ve been following Barb via her newsletter for a while and absolutely adore the way she writes. She’s hysterical and brilliant.
    I’m also fairly new to your page and thoroughly enjoy your writing and all that you share about Emma. I’ve got some catching up to do on prior posts, but in time, I’ll get there.
    Thanks!

  24. I am 65 and have recently self-diagnosed Aspberger’s Syndrome as something I have struggled with all my life. Consequently, although not-knowingly acquainted with anyone else having AS/Autism, I have become very interested in all aspects of the autism spectrum. I really admire Emma, her ability to not only express her feelings, but the courage she displays in sharing herself with others. And I love looking at her pictures every time I come here; she is beautiful inside and out!

  25. My adult stepson has autism and I am beyond frustrated with trying to understand why he does the things he does. Or doesn’t do. I keep thinking if I could just understand more about how he thinks, maybe we both can progress.

  26. A friend just suggested this book because it reminds her of my son. We are currently working on Ido’s book. I’m trying RPM, but sometimes wonder if I should learn more about FC too.

  27. It boggles me that people believe beliefs like this notion that people can mind and body control others from a light touch of two fingers to the back. Please, come try to make me type your bidding using this magic method. It is even funnier when they say “science” is telling them to have these hilarious supernatural visions of alternative reality! Love, Ib

  28. I would love to be able to read Barb’s books. Reading your blog and hers have definitely opened my heart to the diversity of autistic experience. I am active in my local Special Education PTA and would share with other interested families once done.

  29. I am autistic adult and mom to 3 autistic children. I would love to read this book as I think it would be helpful to me and my children. Thank you for this post. Every day I am falling more in love with this blog, with Emma’s words and with what I can only describe as a feeling of being understood. Even though I am verbal, I am not able to communicate verbally the way I want to and don’t come across the way I want. It’s a lifelong struggle

  30. “Now there are some people who have suggested Barb is not typing on her own. They believe that the person whose two fingers are tentatively touching her back are actually guiding her and that it is their voice and not hers that we are reading.”
    … …. …..
    ““I often politely ask my brain to please move my hand to do this or that only to be told, “We’re sorry due to high autism volume we are not able to answer your call at this time. Please try harder later.””

    I think this locus of things should be focused on. The claim as to “guiding” is wrong-headed in its interpretation, but refers to something crucially important.
    Barb speaks to “high autism volume”, which I translate into my own occurring as reliance on autistic sensing, autistic cognition and autistic intelligence. Where that relying sees you taken up in the autistic-work of being autistic, you might end not available for what others might see as social activity, and not available for the personal performing and activity that social activity consists in. That translating back into the experience for the autistic person of the taken-up brain not being able to direct the machinery of person as social purpose would require.
    I think this in turn translates into what others can interpret as lack of executive function or central coherence; albeit that misrepresents things from the autistic point of view.

    What is then crucial at this locus which others want to represent as “guiding” of the writing person, I would want to call “support”. Support so powerful that it can cut-across the exigency of being taken up by autistic “high volume”, allowing you to act socially (that is in a manner making you accessible to non-autistic persons, in communicating).
    How that support then has its effect, is the issue. How that supporting can be extended to where it removes all the obstacles to being autistically, is the issue. How can the collective world be re-dimensioned with that genre of supporting, is the issue.
    That supporting works through a nexus of intersubjectivity we still have to map for autistic purposes. It’s intimate, almost beyond comprehension. It’s global in how it reflects all in which human occurring consists. It’s metaperspective is to the socialpsychological plane of human occurring, as Einstein’s is to the physical plane of our human world. It’s a game-changed in autistic-social interaction.
    It’s most dramatic and powerful vehicle is friendship. A vehicle which sees supported persons go into independent autistic orbit beyond the (social) gravity which the supporting sought to overcome. They then offering mutual support which puts a next generation of effort on a second-stage trajectory. This I see in the photograph of a Barb supported by Lois looking at and to Emma. An Emma capable of carrying forward all that is involved in this, with graceful ease.
    Like Emma and Barb I too depend on needed support. When it’s there and had, I can self-realise and contribute autistically. When it’s absent I too am so taken up in sustaining personal integrity autistically, that a black-hole effect can build. No one guides what I say when support enables me to come out with my autistically characterised perspective; the content speaks to my experiencing. But, in the absence of that support I will remain silent about what I autistically know; autistic volume having such priority that I cannot communicate what I autistically know to those who aren’t already empathically connecting with me.

  31. I am a mother of four, an 11 year old son and 8 year old triplets, two girls and a boy. The triplets are autistic–my son being the most profoundly impacted in communication. Non-verbal, he is beginning to type. I would love this book because of those reasons, and also because Barb is a phenomal writer, and I enjoy her truth and humor.

  32. I would love a copy. I read as much as I can about autism, especially from autistic authors, to gain further insight into how to help my aspie son and my daughter who I suspect is if not aspie very near the spectrum navigate the neurotypical world.

  33. My 12 year old daughter has multiple disabilities some but not all include,autism,cerebral palsy,tethered cord syndrome,complete deafness in one ear,hydronephrosis of the kidneys.She works so hard to function.She has a lot of words they just don’t always make a lot of sense to others.She a fighter and has been her whole life through many very scary medical problems and still keeps a smile on her face.She is my inspiration and i love inspirational stories.Especially if they have anything to do with one or more of her disabilities.So i would love a book.

  34. Shannon Jenkins

    Yours and Emma’s journey gives me hope as I stumble through my journey with my 3 year old, nonverbal, autistic daughter, Kaitey. I want SO much to see her communicate her wants, needs, etc…. I KNOW she is smart, she IS capable… I just need to reach her and help her pull it out!

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