Most of us, who have spent our lives using spoken language as a way to socialize and convey what we are thinking, do not ponder what it would be like if we could not do so. Most of us who are able to speak do not spend time imagining what it would be like if we could speak, but what came out of our mouths did not necessarily match what was in our minds, or wasn’t what we wanted to say, or was taken to mean something else. For those of us who speak and have little difficulty having a conversation with another it is difficult to imagine what it might be like if we could not speak at all. We easily tune out our environment allowing us to focus on what is being said by another person. Asking questions comes naturally, and without thinking we ask for clarification about things we don’t understand or want to know more about. When we cannot hear something or lose part of a sentence spoken by another, we ask to have the part we didn’t hear repeated, or request that it be said in a different way. And even so people misunderstand each other all the time.
But what if we could speak only a little and those hard-earned words we finally managed to say were met with confusion, irritation, even anger and led to misunderstandings. Or what if speaking words was so difficult it was easier to utter sentences constructed by others, sentences that held special meaning to us because it reminded us of a happy or sad or anxious or frightening time. Whenever one of those emotions surfaced, we would blurt out that sentence from the past, because it so beautifully captured what we were feeling now. Maybe though, other people who did not understand or know the meaning they held for us, took them to mean something entirely different.
A blogger friend, E. of the fabulous blog The Third Glance wrote an amazing piece, Words, a couple of years ago about trying to participate in a conversation with a group of friends. I’ve never forgotten that post, it was one of a number of posts that radically changed my thinking. You can read it by clicking ‘here‘. She describes wanting to keep up with a conversation that a group of people she knows is having in a busy place, while trying to filter out the noise that comes with being in a public place, the stress of trying to figure out when it would be appropriate to interject a comment, the pressure of knowing some sort of response is expected of her, and not being successful.
Yesterday Emma wrote, “Talking is easy, but saying what I mean is hard.” I understand that when she wrote that, she meant it literally. Emma “has language” yet cannot carry on a spoken conversation. Emma cannot answer with spoken words questions like, “What did you do in school today?” Or “What did you think of that movie?” Or “Which student in your class do you like best?” Or “What’s your favorite subject?” Or even “What are the names of the other students in your class?” or “Where do we go to borrow books?” As a result all those so-called reading comprehension questions are met with silence, or with words that seem to have nothing to do with the question asked.
The other person then draws the conclusion that Emma does not understand the question, or cannot read, or isn’t interested, or doesn’t care or is intellectually disabled, impaired, has a disorder, a disease, is afflicted, suffers from, is a puzzle piece, is locked in her own world or any other word or phrase used to convey what we believe to be true because of our understanding of her and those like her based upon what she can or cannot say with spoken words. This is the same girl who wrote, ““I can’t talk the way I think. Where is the label for that?” The same person who eloquently answered questions about functioning labels, stimming and autism, ‘here‘, ‘here‘, and ‘here‘.
“Talking is easy, but saying what I mean is hard.”
Emma Playing the “My Mouth is Glued Shut” Game
Emma's Hope Book 
You’ve done a great job of describing and explaining the basic issues with spoken communication here. Excellent post! xx
Thank you Alex. Perhaps more than anything it is the misunderstandings that come from spoken language or the lack thereof that seem to cause the most (inaccurate) assumptions.
Beautiful post. Thank you.
…”does not understand the question, or cannot read, or isn’t interested, or doesn’t care or is intellectually disabled, impaired, has a disorder, a disease, is afflicted, suffers from, is a puzzle piece, is locked in her own world or any other word or phrase used to convey what we believe to be true because of our understanding of her and those like her based upon what she can or cannot say with spoken words.” Oh YES! This!
How utterly infuriating it is when I am told, in all seriousness, by professionals (cough), “Your son cannot speak because he isn’t motivated enough to do so.” I mean, WHAAAAT??? And of course he is standing *right beside me* listening to this rubbish. Emma, thank you for sharing your wisdom with us and helping to prove all these fools wrong.
It’s incredible to think that people actually believe motivation is even a factor, let alone the reason.
This is the most difficult aspect of Emma’s autism for me to comprehend. When Emma writes, I’m blown away every time, but her spoken language and inability to converse beyond a few simple exchanges makes me wonder what it must be like for such a brilliant person to be so misunderstood and underestimated by EVERYONE she comes in contact with who hasn’t been informed of what she is capable of, and/or doesn’t understand RPM, or similar communication methods. When Soma asked Emma to name one of her goals, Emma wrote: “I want to be able to talk.” Soma said that we would work toward that goal which I interpret as “I want to be able to talk like I think.”
I don’t know if I’m correct, but it seems to me that Emma has had a somewhat easier time speaking since she began typing, but we will need to ask her if that’s true. If it isn’t, that’s okay too. I just want Emma to be happy and I love hearing her voice to matter what she says.
“I want to be able to talk like I think.” Yes.
When Emma wins to continuous talking as she thinks, she will move the world.
When Emma wins to this, the process of a contextualising collective world will be unable to close down the space she actively opens up.
Emma will there and then be a free running person.
…or how she expresses it. I agree. The spoken language was, for so long, such a red herring for me. I just couldn’t wrap my mind around the idea that what she said with her voice was not what she necessarily meant. It wasn’t until we began working with her on writing to communicate that I began to understand.
Using language frames our occurring, manages our occurring, gives us what we have as self for ourselves, what we have as self with others.
Those who end socially configured, have accepted what the conventional language usage of their era mediates (allows for and precludes). These persons identify with what their language use mediates. What their speaking cannot easily bring to mind, is shunted to the subconscious and unconscious. Such persons are, by and large, what they can easily say. They mean what they easily say, and they easily say what they mean. They are culturally contained by their language usage: stepping beyond that containment would compromise their membership of a language community; stepping beyond that containment would be stepping into a fearful unknown.
Those who begin autistically configured, are never so contained: have passed through the membrane of cultural and social/societal containment, without sensing or perceiving or thinking about it; are sustained ferally across sense of what actually is, have a core self mediated by that sensing and what cognition such sensing allows for.
To use language to speak out of and about autistic occurring, sees it used to autistic ends: and, while there are commonalities across generic autistic usage; that usage will vary individual by individual. The commonality across generic autistic usage, is perhaps a seeking to convey autistic sense and vision and understanding of everything in which human occurring and life consists, where an autistic take differs from a social/societal/accultured take, because it is produced by an individual relying on their own senses and cognition.
Emma, saying what you mean is hard, because what you mean is autistically rich and complex, because your senses are open to what actually is, because your senses have not been captured by convention and normalisation.
It is equally hard for Ariane and Richard to say what they mean. Not because they struggle with language capability, but because what they mean to say is so difficult to put into today’s language.
A very wise writer, Anais Nin, once said: “The role of a writer is not to say what we can all say, but what we are unable to say.”
You are already saying what many of us found ourselves unable to say. Like Anais you sense what is difficult to put into words. That is your badge of honour.
“Those who begin autistically configured…” what a wonderful way to describe so much.
Thank you Colin, as always, for your insights, your kind encouragement and your compassionate wisdom.
It is so very important to remember this when interacting and working with children like Emma. Sometimes the answers take a long time to come or are imbedded somewhere in what does come out verbally. Emma is so brave and strong to share her world with others. There is nothing more beautiful than hearing the voice of one who speaks infrequently, no matter what they are saying. Emma must never forget that what she shares with all of us helps so many. I didn’t get to send a note yesterday , but the scarf story was excellent! I like all the scarves, but blue is my favorite.
Reblogged this on Appalachian aspie..
Thank you, colin. And thank you, Emma. I’ve known for a long time that my daughter perceives the world much differently than most, and must take extra effort to express herself.
Ariane, I’ve been reading your blog for a little while now and I want to say thank you to you, and Emma, for helping me understand my son so much better. He is 6 and super verbal, to the point of talking almost all the time, and because of this we’ve only started to see in the past few months that he seldom can say what he means. He can talk for minutes on end about the tropical fish he likes at school, but when he tried to tell me that his friend got sick in class the other day, all that came out was that the friend lost his backpack. I think his teachers just think he is being silly by saying the wrong things, but reading about Emma’s difficulty with the right words has helped me make better inferences about my son’s own misspoken communication. Thanks to you and Emma as well, I’ve also suggested to his teachers that he start writing about his day (fortunately, this is a real academic strength of his), in addition to working on the spoken communication. Now I’ve received a few short sentences about playing with friends at recess or what he learned in music class, and it’s been wonderful.
It’s something I understand. Concentrate on the shape of this word: autism. Can you pull it off? Given the fact that we’re on a blog about autism, I’m willing to bet that the shape of the word is the last thing you think of.
Now imagine this: Process what the person is saying. Wait, that was a question? Answer, mouth, answer! Say something! Show I heard them! Wait, they aren’t happy. Should I make them happy? Yes, let’s make them happy! Why are they just more disappointed? I’ll try again! I’ll say something that makes me happy!
By this point, you might not remember that the whole mental dialogue started with a question you were supposed to answer.
Now imagine that you deal with this constantly. Emotion: make them happy. Mouth: say something. Brain: running on overdrive. That is why some Autistic people don’t speak.
Great post Ariane. I have never understood why most people assume that just because you don’t have speech or a lot of speech you don’t have comprehension. As is speech is the only valid way to communicate as a human being. As a nurse I cared for people years ago post stroke. Language is such a complicated thing and involves many parts of the brain. Some post stroke could no do the physical mechanics of speech.Others could talk, be thinking one thing but other different words would come out of their mouths. Some could not remember the words. Sometimes people could sing but not talk. But most still had comprehension.My son in the early days could sing, and make up songs about things but not talk. He can write about his day but not verbally tell you about his day. My daughter really struggles as she cannot write.She is learning to sign though, and when she signs she can often say the word. she uses this better than proloqu2go. Amongst all the absolute horror of her stroke last year was that for the first weeks she couldn’t use her hands or raise her arms which left her with no way to communicate. Thankfully that has resolved. People communicate in many ways by their very behaviors. We just need to open our eyes and see.
Have you seen this? It’s remarkable – similar path? http://www.nytimes.com/2014/03/09/magazine/reaching-my-autistic-son-through-disney.html?_r=0
Also http://en.wikipedia.org/wiki/Expressive_aphasia
Thank you.
How easy it is too talk at all or to when I do get to what I mean is frustrating. I am quite a skilled speaker at times. Quite entertaining I am told if I go on and on on my passions although sometimes the easy speech about those things distracts me from what I meant to communicate about.
I had 30 minutes with the only person intensely involved in my care right now that I trust, before he was gone for a month and I spent most of talking about various aspects of gaming and the developing area of ethical gaming. Interesting but because in order to trust him he has to lack everything that would have reminded me of all the things that fall to his domain I forgot to attend to any of those.
I have had a stressful few years. I am often silent in situations where speech is expected or almost as bad in terms of what people wind up thinking is that I am sometimes slow of speech. People have left the room as I approach word 3. People have been prepared to throw me in a hospital bed because the time it takes me to get to that same word 3 (it must be roughly as long each time as word three is always the breaking point in patience of others) because I am clearly too incompetent to follow through medically is alarming.
I do not know why people, especially those educated enough to know far better then they appear to jump to wild leaps. Intelligence is usually quite apparent whatever package it comes in. I have met many a non-verbal or seldom verbal person and that so many people somehow could not see the spark of interest in their eyes or gleam at times of mischief or humour I don’t really understand. Seems like a failure on the part of the people making decisions and jumping to conclusions but it will of course be that not traditionally packaged person that bears the consequences.
Gareeth. I love everything you write; because you write so authentically out of and about your own life and occurring. You make me more mindful of my own need to remain authentic. Speaking puts my authenticity at risk. Writing enables me to recover authenticity a little.
I don’t know. A life less authentic is almost as big a stretch as a normal one to imagine.
There are things I wish I could say directly to Emma about speech but probably everyone has to find their own truth about it. Mine was that you could graduate speech therapy. Be incredibly articulate in more than one language and sometimes not be able to talk when you needed it even a lot or a little.
Because of the events of the past 27 months now I may be more in tune with what it is to be closer to my child self because never have some capacities fled so often that I thought I had a lock on.
I thought I had made after too many years good peace with many things but not having to deal for so long with some of the bigger frustrations of autism may have helped me fool myself a bit.
I try to think this period of my life may be a reminder I needed somehow. It’s hard when things are tough to see the usefulness of it but being totally in touch with the self that does things I once managed at least to get behind a door to do doesn’t making not being authentic an option. I do wish to be less alarming but in 45 years of being me I know when the added stress of trying to control that which I can’t will just make it worse.
I wish a world existed where Emma didn’t have to think talking was important. Some of the best experiences in my life have been with kids who barely spoke. Riding a roller coaster with a kid who however many times we abuse the front of the line armband to go right back on it for her to say in a matter of fact statement of mutual enjoyment that we are upside down even when it’s the 5th time we have been as her mom hates rides so I am the perfect solution.
Got a bit over eager on the tea cups and she was very understated again in describing the logical out come of too much spinning after I had eaten. (The ride was shut down for a solid hour I think) The limited amount of words needed to have a great day and that she likely said things she never said before or since well that should be the world’s issue ideally.
Ariane, I have read every post you’ve written. My son, who is 3 1/2, was diagnosed with PDD-NOS a year ago. I discovered your writings months ago and started reading your posts from the beginning. Your writing is inspiring, and I share your philosophy that our children don’t need to be fixed – they are perfect the way they are. I have two other children – girls ages 5 and 11, and I would no more want to change my son than change either of my daughters. I want all my children to live to their fullest potential, and that will be accomplished through understanding, love and acceptance of each person the way they are. Your blog helps me tremendously. You are an inspiration. I want to thank you for giving so many of us readers strength, ideas, information, and most of all, hope. I know your writings take a lot of time and dedication. Please know that they are not for naught; you are reaching so many people and encouraging all of us to love our children the way they are. As Johnny Seitz remarked in Loving Lampposts, “You haven’t got a big enough imagination for what your child could become.” With your writings, you remind us all every day to have faith, to believe, and I do. Thank you.
Thank you so much Jenn. Really, really appreciate your writing this, you have no idea how much it helps to hear.
I love when your posts give me little nudges and reminders for my own journey with mine ❤