Speaking vs Typing

At an Autism Conference last month someone asked my daughter “Have you ever been to Australia?”  Em immediately answered “Yes!”  Yet when this person held up a laminated card with two boxes, one red with the word NO and the other box green with the word YES and asked the same question, Em promptly pointed to the red box with the word “NO”.  When asked what she had for breakfast that morning, she answered, “Vanilla cake!” but when asked the same question and asked to respond by typing she wrote, “I ate cereal, toast and yogurt.”

Many people ask me why we are spending so much time and energy learning to support Emma’s typing.  The most common two questions I’m asked regarding this are – why do you need to support her at all when she can use her two index fingers to type independently  (I will write a separate post on that question) and why do you encourage her to type when she does and can speak?

Ironically I have yet to find accurate words to describe my daughter’s speech.  I’ve said things like, “Her speech is unreliable” or “She can use language, but it often does not reflect what she really means to say” or “When she types we get a more accurate idea of what she intends to say, wants, or is thinking.”  But I’m never sure people understand what I mean or if they do understand, whether it helps them when they try to talk to someone like Emma.  (I have since met a great many people who have some language, but it is “unreliable” in that they will say things that are not necessarily the answer they mean or the words they meant to say.)  Inaccurate speech is not because the person means to evade or is willfully not telling the truth, but is indicative of specific brain function.  Lots of speech therapy, concentrating on spoken language, did not help Emma.

By the way verbal scripts serve as a default and come into play often in context to what is going on, but sometimes they are triggered by a detail.  The script can appear to have nothing to do with the topic being discussed.  For example we had an electrical storm the other night which reminds Emma of the fireworks on both New Year’s Eve and the Fourth of July.  Emma calls both firework displays and electrical storms, “thunder fireworks.”  She also calls rain storms and electrical storms, “firework bubbles” or “motorcycle bubbles”.  But if you didn’t know any of this and were with her when it began to rain, you probably would not understand the association when she said, “Ohhh, look!  It’s motorcycle bubbles!” and then pointed cheerfully out the window.

If I ask, “Em do you want to make vanilla cake?” Em will ecstatically respond, “Yes!”  She happens to love nothing more than vanilla cake with vanilla frosting.  I know this, no further questions are needed.  However, if I ask her, “Em what did you eat for dinner last night?” She might respond with, “Vanilla cake!” or she might respond with what she actually ate.  If I ask her why she was crying on the school bus, she might say, “You cannot scream!  You cannot scream and bite on the bus.  If you bite, no hitting!”  or some other equally cryptic answer that does not answer the question of why, though it does give me a good idea of what was said to her and that she became so upset she began to bite herself.

However if I ask her to type her answer, she might type, “A boy was scratching my seat.  I asked him to stop, but he kept scratching.  He made me mad.  The matron said, no kicking.  Emma’s sad, Emma bit her arm. I don’t like that boy.”  If pressed further, she will type his name and I will be able to tell the bus matron that Emma should not be seated near the boy whose name is X.  Problem solved.  The point is, when typing, Emma will write things she does not say. But to people who are unfamiliar with someone like this, they find it confusing.

When I showed Emma this photograph just now and asked, “what do you see?”  She answered, “Good!”  We went horseback riding while visiting my sister last week.  And it was.  It was “good!”

Horseback riding

73 responses to “Speaking vs Typing

  1. Thanks for this post. It is a great reminder to me that even though my son with aspergers is highly verbal, at times of high stress, he is still not capable of discussing what is going on. Thus, trying to get him to “use his words,” often escalates the situation rather than helping it. Often people at his school want to put the expectation on him that he be able to communicate like other kids and in reality because of his disability he isn’t able to and we need to accept that. He may develop those skills in the future, but for now, we need to work with the reality we have.

    • I too, during times of extreme upset will “lose my words”. I actually think this happens to many people, but in a less extreme way. The phrase ” use your words” is like telling me when I’m very upset, “don’t feel _______”. If it were that easy we would all be able to regulate ourselves, always find the words we mean and have no trouble accessing them at all times.
      This idea that we are all capable of operating at our best every day, all day is an odd phenomena, seemingly reserved for Autistics and I’m not sure why that is. We certainly do not expect the same from ourselves or others who are not Autistic. Perhaps it is the extreme to which people like my daughter fluctuate, though I’m not sure.

  2. Linnea Rademaker

    This is fantastic! Thank you, again, for sharing a bit of Emma’s world, and please convey my thanks to her, as well.

  3. I am SO glad you wrote this. My son Nathan (4 and a half) does this exact same thing. Especially when he is upset. Yesterday he got upset over something, sat on the floor and said, “I need a banana! Pear applesauce! Have to go to the bathroom!” When I asked him if he wanted a banana, pear applesauce, or needed to go to the bathroom he (correctly) responded “no” for each one. To complicate matters further, he has recently started to use labels to tell me something, instead of just to request. So, he might say, “cake”. I know that we had cake yesterday, so he is probably just talking about it, but someone else might think he is asking for it.
    So I was wondering, what is a good step before typing? I am assuming (perhaps erroneously so) that Nathan can’t spell (because most 4 year olds cannot spell), so he really isn’t really for typing yet. He knows his letters (he just read the keyboard…”D…F…G…H…candy cane…K…L…”) and maybe some letter sounds. I know there are lot of AAC apps out there. Any recommendations? I know that Proloquo to 2 is supposed to be the go to app….I also heard good things about Speak For Yourself. His school is going to start working with him with some of these to see if they can find a good fit (frankly, that works for me…then I don’t need to buy them all and try them out).
    One other question. Did you ever ask Emma about what is going on in her head when she answers in ways that don’t make sense? Does she know that she didn’t give a “correct” answer? Or is she so disorganized when she does it that she doesn’t know it isn’t “correct”? Or does she have the correct thoughts in her head and other random words come out? Nathan can’t tell me yet, but I always wondered why this happens? (I also understand if Emma doesn’t want to or can’t tell you the answer to this. Or if she doesn’t want to post it online.)

    • I think sometimes those ARE the “correct” words, they just don’t translate to the same meaning in your, the listener’s, head. Isn’t that what all communication errors really are, even between neurotypical fully grown adults?

      “I thought you meant I was supposed to take the trash out when you said something about those garbage bags in the hallway! How was I supposed to know those were intended for Goodwill!”

      Something similar happens with autistic children and adults, I think. I can say “applesauce” because I remember that one time where I ate applesauce and it made my stomach hurt and I threw up and that’s the feeling I’m trying to describe right now. Or simply because the sound of the word makes me happy. (I sing “cuppa tea cuppa tea cuppa tea tea tea” to myself every time I put the kettle on. I can’t help it). 🙂

      So communication works two ways. Teaching your child to use words that you understand, and teaching yourself to understand your child’s words. And finding whatever means necessary to facilitate that two-way street, both for yourself and for your child, is the most important thing and you shouldn’t let anyone, including me, tell you what works best! 🙂

      • I totally get and agree with what you said about communication working two ways. And I’m totally on board with trying to figure out what he means when he says things that are “nonsensical” to me. It is sometimes just hard for me to figure it out, and I think that is frustrating for him. He just wants to be understood. I think I am just struggling to find a way for this to happen.

        • I think you’re being an awesome mom just for realising this and trying to find ways that work! If that wasn’t clear from my previous post then I apologise.

          • No, it was clear. I didn’t take what you said negatively at all. I just reread my response and see how you could have thought I said that. (Guess Emma was right when she said that language is an awkward way to communicate!)

      • Autisticook – Love this comment! Yes, absolutely.

        The word associations are one thing and the word retrieval issues are another, sometimes they overlap, but sometimes they do not. So Em, as she did a couple of weeks ago, will type “Language is an awkward way to communicate” however this profound and wonderful sentence is not remotely similar to anything she has ever said. Someone commented the opposite of this on today’s Facebook post link – “I can not convey deep thoughts very well in writting but can very well in speech. I have difficulty conveying simple thoughts in spoken language especially when upset but can usually type at that time.”

    • If he can’t type or write yet but knows his letters, try a letter board. It’s slower, but it works well for younger kids. For many of us on the spectrum, speech is not our default mode of communication. Amanda Baggs has said that when she types, she must translate the thoughts in her head to become words. This is partially why she does not use verbal speech to communicate. She said that when she used to talk, the words that were spoken often had little or no relation to what she was thinking or intending to communicate and it was very difficult for her to use verbal speech at all.

      • Hold on, I missed the part where you said he couldn’t spell. Do you know if he can read yet? A lot of autistic people learn to read earlier.

        • I don’t know if he can read yet. I guess I was assuming that he couldn’t (bad mama! presume competence!). Although I have to say, this morning I was talking to his therapist and I said, “He hasn’t had anything to eat since yesterday when he had c-a-k-e” and he immediately said, “cake”. I don’t know if he understood what I was spelling, or if he understood the context of what I was saying and remembered the last thing he ate. It’s the only time he has done that. I guess I need to figure out where his skill level is at (can he read? can he spell?) and go from there.

        • I agree Laura, in fact it turns out Emma was reading far more and faster than any of us fully understood until very recently. But she was being “tested” by being asked to read out loud and then was being asked to verbally answer comprehension questions, neither of which she could do, so we kept dumbing the reading material down. Big mistake! It turns out she reads faster than I do and comprehends age appropriate material and who knows, perhaps above grade level too!

    • I’m typing on my phone, but will respond to your comment in detail a bit later this evening, I promise.

    • Hi Beth – a couple suggestions for beginning… as Laura suggested, a letter board is a great way to begin, we actually started with a stenciled letter board and gave her a pencil to poke through the letter she wanted. You can buy them with the alphabet divided into three or one – http://www.halo-soma.org/store.php (you may be able to get them somewhere else). Grasshopper has a great many beginning reading and writing apps – http://www.grasshopperapps.com. There are also countless beginning writing apps and the precursor to writing/typing is isolating the index finger, grasshopper has many apps that work with just visuals if there are any physical issues present.
      Assisitive Chat is a good app for typing with a voice that says each letter, then word and sentence as they’re being typed – http://www.appsforaac.net/app/assistive-chat
      I didn’t like the automatic suggestions that came up and in the beginning Emma found them distracting, but it’s a much cheaper alternative to Proloquo2Go.

      I have asked Em a couple of the questions you ask, but not all of them. We are very much at the beginning of the road as far as all of this goes. However, as she reveals more I will let you know.

      • Thanks so much for the links. I will check them out. His school uses the Handwriting Without Tears Curriculum, so he is using an app that allows me to set that as the default way to write the letters (Letter School, if anyone is interested). It is a nice program because it has both a visual and verbal component to it (for example, N is “long line down, jump to the top, leaning line down, long line up). He is a verbal learner, so this really helps him. He is slowly but surely working on writing his uppercase letters. So, if I get a letter board, how do you start with it? I can’t imagine that I would just ask him something and he would point to the letters to answer. I was also wondering, why are the letters alphabetical when the end goal is typing, where the keyboard is not alphabetical? It seems like it would be an extra step to have to go from alphabetical to qwerty.
        I think Nathan’s school has P2G, so I will let them explore that one with him.

        • Hand Writing Without Tears was useless for Em. Her school used it for several years. She enjoyed it, but never moved beyond very basic writing, or perhaps it was that they did not move her beyond the basics. The letter board is interesting. I thought the same thing. Why would we use a stencil board set up alphabetically when the goal is independent typing on a qwerty keyboard. Em moves seamlessly from one to the other. The stencil board has a tactile quality to it that Em likes. I give her a pencil to point at the letters she wants. I take the pencil write down the letter, hand it back to her, she points to another. In the beginning you might try something relatively simple to see whether your child is even vaguely interested. For example: What letter does your name begin with. Hand over the pencil. Once a letter has been pointed to, take the pencil and write the letter down. What’s the next letter? Etc. ICI in Syracuse has a terrific “ladder” for supported typing that we have used with excellent results. I just tried to find a PDF to send you, but can’t. I’ll try to find it later (we are traveling today and I won’t be near a computer until very late) but it is a terrific way to begin. I know this can feel really overwhelming. Let me see if I can pull together some resources and put them into a post for next week.
          PS The Halo Center that Soma Mukhopadhyay runs uses stencil boards with amazing results.

          • Thank you so much for the info. I would be interested in the ICI’s “ladder” for supported typing. Interesting that it was so easy for Em to move from the letter board to the keyboard. Is there a good reference for how to start with the letter board? Cause I could see me asking Nathan “What letter does your name start with?” and him not pointing to anything, or taking his hand and slamming it on all the letters, or taking the pencil and scribbling on the paper. Or falling out of his seat. All your typical “I don’t know what you want me to do here” stuff. Is it OK to physically prompt him to point to the correct letter? I have watched some of the videos off the Halo Centers cite, so I sort of get the idea about how to do it. I just don’t know how to start with him. I have also seen Soma do the thing where she gives the statement, (The table is brown) then writes down two answers (brown b-r-o-w-n green g-r-e-e-n) while she writes them down on paper, and then asks the question again and the child points to the correct answer with the pencil. That he could do if I could maintain his attention. I’m not sure if there is a step between the paper question/answer thing and using the letter board. I really appreciate the info!
            As for the Handwriting Without Tears, if he can learn how to physically form the letters (which he is starting to do) then I will be happy. If that method doesn’t work, then we’ll move on to another one.

    • Try PEC cards. (Picture exchange cards) I did that when my son was 2 and if I asked would he like a cookie or doritos, he would repeat whatever the last thing I said, so I said it again, but this time holding the pec cards and he then pointed to what he wanted, which was actually the cookie, and not the doritos that he stated. Sometimes, I wonder if it is a kind of expressive Aphasia or partial expressive aphasia. Depending on the situation, that area of their brain could be affected and the “disconnect” response to the questions could be the result of the information not being sent correctly. From hearing it, it goes from the ear to the brain, and from what is described as to how Emma responds, it sounds like it gets there correctly, it just doesn’t always send out the right words. Something gets” mixed up” in the brains ability to retrieve spoken words, and the wrong word is said. It takes different areas of the brain to type rather than speech, and it sounds like the “wiring” is fully working for that all of the time, so it is the most reliable form of communication. It should cause a LOT less anxiety for her, if she has a device(such as something she can carry with her like an ipod that has the “read aloud” narrator. that way, she can express what she is really thinking when her response is not quite what she wanted to get out. It can be very very frustrating to have something you want to say, and it just doesn’t come out right at all. I have even had those times when I just gave up talking to people, ended up isolating myself because often a bunch of nonsense gibberish would come out of my mouth. I had to really focus on what I was saying and even then, I could not “retrieve” words I wanted to say from my memory. I could look at something and not be able to say what it was called. I found vit. B12, folate, and Omega 3 supplements helped a lot with those issues.

      • Thanks Genisa. He is able to use PECS. We mostly used them for making choices and for scheduling. I think we are looking for something that is a little less limiting for him. With PECS you can only say what you have pictures for. With something on an ipad, he would be able to say a lot more, once he learned to use it. He is already taking B12 (MB12 shots), folate, and fish oil among a few other things (probiotics, enzymes, etc.). Thanks so much for your feedback though! The more I get the better choices I can make to help him out.

  4. Sounds just like my Olivia also! Beth, my daughter is almost 5 and we use Sono flex for the ipad. You can get Sonoflex lite for free and try it out. I am waiting to hear Ariane’s response because I have that question also!

  5. Yes! We experience this too. It is hard to explain to others that Philip’s speech is not an accurate showing of what he wants to convey (usually) but his spelling is. He will answer yes to yes/no questions as a reflex response only to then “change his mind” through his actions. This used to be very frustrating, but now that we use a letter board, he is accurately telling us what he means and the frustration on both ends is a lot less. Thanks for bringing light to the importance of teaching communication through alternate methods. There are a lot of expert voices out there who would tell us otherwise, but we need to trust ourselves and our child first and foremost.

  6. My daughter who is not autistic but dyspraxic has similarities here but to a much much milder degree. If you put her on the spot and ask her what she had for breakfast she says the first appropriate response that comes to mind like “pancakes” even though she had cereal. For her it seems to be is her slow processing speed. Formulating a response under the expectation of others will make her say anything. That combined with her mind busy trying to filter surrounding stimuli makes it hard to communicate properly with her sometimes. Maybe different from autism…but many similarities, Thanks for the thought provoking post.

  7. This post resonates so much with me because I know when my daughter is saying what she means and when she is “lying” as other people put it. I know she is struggling to process speech even though she sounds extremely competent. She is a pictorial thinker (I think) and responds to pictures every time over words.

    I hope more people can be made to understand that speech is not the “be all” in communication – and learn some respect to go with that understanding.

  8. I’m 45, and I’ve had times of having words come out that were other than what I’d intended. For example, I’ve meant to say something was a parenting practice exhibited by my sister and brother-in-law (outstanding parents, btw) and instead stated it was something done by my parents. And last week, it took me three times of restarting my explanation to get out the right words to tell someone how I’d hurt my hand a couple of days earlier. Having only been diagnosed a little over year ago, I never thought about this in connection with speech loss – or even autism – before. I have so much ground to cover in order to understand myself now.

    Under stress, I can find speech challenging and have various problems, but I’ve never thought of myself as being intermittently nonspeaking. Often enough, I’ll talk faster and faster, trying to get out all that I want to express, both in thoughts and feelings. I interrupt others and then feel bad for having done so. Eventually, it’s as though it all races through me so fast that I can’t grab on anymore. I only get pieces of things. Then I might start one sentence, continue with another, and end with a third, as though all those different things could belong in one chopped and hastily shoved together sentence. Or it’s like having my internal dialogue wind up into a dog whistle pitch, so there are no words anymore. But this is more rare, so almost no one ever sees it.

    At other times, my mind seems to be moving too slowly or blanking intermittently, and I can’t make it catch up. I pause. I speak slowly and hesitantly. But mostly I might, at a time like that, decide not to participate in the conversation, so people won’t know it’s happening. If I tried anyway, would I discover I’d lost my ability to speak at all? I’ve protected myself in front of others too well for too long to be sure. I don’t know how much of my “decision not to participate” is a way of hiding from myself an actual inability to speak. I also have no idea how much of my frustration at not being able to jump into a conversation is only that others make it challenging for anyone to get a word in edgewise and how much is that I can’t make the sounds start and keep coming out in the first place.

    Sometimes I just feel surprised and unprepared, especially if I think I’ve accidentally fallen into “debate” territory. I might not be able to think of what I want to say to respond to something someone else says to me, and I try to leave the conversation if the matter can’t be resolved quickly. Again, though, I disguise it out of habit.

    I’ve also noticed that I get softer and softer sometimes when someone tries to get me to speak up (a terribly stressful request to try to honor) and that I have times when I can’t pronounce familiar words correctly and/or smoothly (unbrokenly), even if I don’t think I’m stressed.

    I’ll have to think some more about what all this means. Thanks for writing something that gave me reason to look at an old issue in a new way. This is why I read both the blogs of autistics and the blogs of progressive parents. I have such a long way to go ahead of me…

    • Reading about being told to speak louder reminded me of how much I hate having my photo taken and how the more someone urges me to smile the more I look as though I’m about to cry. I literally cannot smile on cue. The other thing is tests. As a student I would get straight A’s, until there was a test or if someone asked me a question that I was required to answer out loud. I failed miserably. It was as though my mind emptied out of all information, I could not think and the more I worried, the worse it got. I tried being aware and practicing breathing, I tried over preparing, I tried doing “mock” tests, and while all of these things helped a little, I was always surprised when asked something I knew and yet could not answer if I knew it was a test.

  9. Great piece Ariane. You know; Business 101-Always get things in writing. Hah. So, there. There is no rule to do anything in one way, if it works, something else can be tried. But always get things in writing we learned and say in the business world. Even in personal lives, writing things down brings out more clarity to things. I’ll take it further, my husband used to lie to me all the time, yes, all the time. Of course, my analytical brain with thousands of foxes running in it, would pick each scent, follow it and would find zillion lies and fight even harder always ending shouting matches, one of us slamming the door and leaving, me following him yelling and screaming. After the diagnosis, we learned to communicate more effectively and one day, in the middle of a heated argument-not a fight-, my husband got up and said “I’ll be back in 6 minutes”, I was like, wait, wait, ought, I was spitting words, wait… He did come back after 6 minutes, and I asked him what the hell, what is this 6 minute business. He said “Love, it takes me 6 minutes to smoke a cigarette and during that time, I think about our conversation and exploring each item trying to understand what you were saying”. I felt so ashamed, there I thought he was always lying and believe me there were times he was lying and and hiding things, but most of the time, to get me off his back, he would say the first thing that came into his mind. All those words were too much to entertain at the same time, especially when he thought he was under pressure. We decided to one item at a time kind of conversations, I learned to ask better questions, he learned to be more open and self advocate and ask when he didn’t understand. Now, when we discuss things, I ask for a confirmation that he got what I was saying and I do the same. t is no different than when you give a piece of info over the phone to someone, and you ask confirmation they got it, they repeat it, or put it in writing and sign it and send it over. Or recap a conversation and email it. Some people autistic or not do better in writing, PERIOD. and of course we need to accommodate it if we want to have clear and concise communication with them. None of us signed a contract when we were born that we would only communicate in one way only. There is more than one way of doing anything and communication is certainly one of them. You are awesome, so is everyone in your family and you guys are doing a great job trying to work together and learning and developing better ways to facilitate that. That’s all.

    • Katrina Phillips

      I agree with you completely about this. My preference, actually, is for typing because it gives me a better handle on my thoughts. I also prefer it when communicating to anyone about anything important (such as conversations with my ex-husband regarding visitation schedules for my daughter) because it has been made abundantly clear to me, repeatedly, that mocst people really have very terrible recall. Many, MANY, people I have encountered in my life have been experts at self-deception, and have molded their memories of events or conversations into what they *wanted* them to have been instead of what they were. So, yes, 100% YES… always in writing. I think it may be the only way sometimes for everyone to keep themselves honest, especially with themselves. 😉

    • (((Shenny))) Thanks so much for sharing all of this!

  10. If typing works for Emma encourage her to type forget what others think or say.

  11. Ariane, Another great post! This describes my experience over and over again with young kids on the autism spectrum. In some ways it was harder for those who could speak because people assumed what they SAID was what they wanted to say – and often it was not. Many of them told us to listen to their typed words and ignore the spoken ones. Oh, how I wish the “experts” had been studying what is going on with these amazing kids rather than all the effort put into debunking what we have been doing for over 20 years now in helping to support typed communication!
    And from my experience — YES, a 4-year-old may well have some basic reading and spelling skills just lurking there ready to be shared. Go for it!

    • Considering I’ve discovered that my dog has rudimentary reading( recognition of name-logos on signs), I’d say people should have MUCH more faith in the possibility of non-verbal autistic kids picking this ability up. It’s really an easier form of language unless your brain is very strongly set up for speech—but I guess NTs really are that strongly wired for speech that they don’t easily understand how a visual format could be so much easier.

      • I know there are things that are very difficult for me to conceptualize and understand, things that my non autistic brain struggles with and makes it much harder and takes me longer to understand. I want to project my feelings, my experiences onto the other person, when almost always this is not appropriate.

    • Thanks so much for this comment Char.

  12. Katrina Phillips

    Ohhh… I understand what you mean by “unreliable” completely. It is the way I most often describe my 5 year old’s spoken language abilities. Apraxia really puts the brakes on his ability to speak. The words are in there, we here them sometimes, but very rarely can they make their way out. Interestingly enough, my 4 year old, who is also on the spectrum, gives all the appearances of having language. But as others have noted, it really is not reliable either in terms of being “normal” spoken language. He is still very young so it is still highly scripted, and to people not around him much, it can seem like arbitrary or meaningless chatter (much as Emma’s “motorcycle bubbles”). As he gets older, he is clearly getting more sophisticated in altering his library of scripts, and making them his own, so only time will tell how much he will improve in that area. It may be that typing ends up being a more reliable form of communication for him as well, which, honestly, is not something that had really occurred to me until just this moment!

    But yes, “unreliable, I think, is the PERFECT way to describe the language skills of some of our kids. (perhaps *many* of them, even?)

  13. Mary Jane Blackman

    About a year ago you spoke about my daughter Lucy Blackman and her book ” Lucy’s Story”. Thanks, it was great to see – I should have said something then but life caught up with us! I hope find this interesting too and that people pass it on.
    Lucy had (and has) all the problems with speech Emma has. She started using a keyboard when she was 14 and she turns 41 next month – over 27 years of this. The last year Lucy and I have been in the process of trying to put together a collection of existing material and recent writing about her language processing and ways of using it. It’s called “Carrying Autism, Feeling Language” . It isn’t finished but most of it (including photos at the beginning and in a “picture gallery” near the end) are available for free download in this version in PDF and e-book formats on https://www.smashwords.com/books/view/314657 You may have to download the Kindle for PC app from Amazon and then transfer it to your e-book, and perhaps the same with the e-pub formats, but it isn’t hard – I managed it! The book is still missing a bit on visual processing and (hopefully) some recollections of trips we did to US & UK 1994, 1996 and 2001.
    In the process of writing it we started looking again at hand writing (of a sort) but ONLY for practical stuff at this stage and involving elements of using a keyboard, and trying to cut out “nonsense” words – the rationale behind this is a bit convoluted. Hopefully we will tackle it in another book (or something) a bit later when she has more experience. Remember she is an adult, and was 39 when we started working on this – we are looking for a practical solution to a real world problem! Feedback welcome!

  14. as usual Ariane another excellent post where you tackle a difficult yet very vital topic on this journey! My child too has very unreliable speech, and very little at that and faciliated writing has been the key to unlocking her brain. So hard for those on the ‘outside’ to get that. and the replied conversations here have been ground breaking as well. thank you!

  15. my dear neurotypical friends, first, let me say i love that you all are putting your heads together to break down this truth into practical ideas to help me and my autistic peers who struggle mightily with spoken language communications. em is right, “language is an awkward way to communicate” and i argue that is true for everyone but highly challenging for those of us who are autistically wired in the “vanilla cake” or “mail truck” way that em and i are. it took me years to think in language. but prior to that my thinking was not faulty it was just not language based. thinking in language is not efficient for me. i wish i could give you a pretty little fact package about what works so folk like me could get such treatment and soar socially and academically. of course, the problem is…it is hard to say in language. typing makes it way easier, because i can control the speed of each thought and break it down to smaller parts to be better described by letters one peck at a time. speaking requires a rather unnatural process for me perhaps like you singing a song you heard in another language. u may be able to imitate the sounds but the meaning in each mimic is not precise. since most folk are not yet well practiced in telepathy the best way for me now is to communicate through typing. but still my thinking is not easily translated in to words. feelings, sensations, visions and perceptions that are cleanly processed in my mind dont fit well into letter symbols. there i said it – or something close. thanks for caring. trying b

  16. Thank you, Barb! I would like to share what you have written here with some of my friends who type to communicate. I am guessing they will agree with what you are saying. I know it will help all of us understand one another better. In some ways, we ARE “speaking” different languages. I keep waiting for that day when we are all “practiced in telepathy”!

  17. We see some of the “unreliable” language you describe with my son. If he gets overwhelmed or for some other reason is not able to retrieve the word he wants, he’ll use an example from that general category, e.g., he will verbally describe all colors as green, even though he has always been able to differentiate between them. Thank you for sharing this part of Emma’s & your story, I hope it will help more people will understand just how unreliable language can be, and help them focus on finding ways to support better communication.

  18. What my ASD partner has to say about ‘Alternative Communication’ & in our world, one method isn’t more valid than another method of communication. http://www.astronautsarecool.com/apps-to-help-communicate/

  19. Wow! Thank you so much. You’ve just explained my daughter’s difficulty for me. Professionals and I (I have two other older ASD children who don’t do this), have been struggling to unpick why she gives random answers to questions.
    Not only have you helped me understand what’s happening, you’ve also given me an effective strategy to try to support her with.
    Many thanks Ruth

  20. Thank you so much for this. It sheds so much light on my son’s situation. My 5 year old son was just diagnosed in February and, because he never had any speech delays and does indeed possess the grammar and vocabulary to say anything he wants, we’re only just discovering these types of language difficulties. It’s clear that he can’t express himself accurately when he’s upset, but I noticed for the first time the other day that he told a teacher he had a jelly sandwich for lunch when he didn’t and I had no idea why he would say that. He does know how to write words and it never occurred to me to ask him to write his answers, but I will try that. He also is very gifted at drawing and there have been a few times where he’s been able to make pictures to work through emotional incidents or scary things that he hasn’t been able to talk about reliably.

    • My daughter didn’t start giving me full answers to questions right away. We’ve been working on typing for a few years now and almost a full year of supported typing. Keep me updated, I’d love to know how things go!

    • I find that I sometimes blurt out the first “acceptable” answer I can think of because it’s taking me too long to answer and the pressure is so high to say something, anything at all. I have that a lot with emotion words too. I’m slowly learning to say “I don’t know” when a therapist asks me what I’m feeling, instead of taking a guess at an approximate emotion word because I need to come up with an answer.

      • Yes, I do the same thing. I also often find myself apologizing when I actually have entirely valid reasons that would make the other person the one to apologize if they knew the situation( and they sometimes even DO, and wonder why I didn’t tell them, when they find out later), simply because the apology script pops up before the true explanation can be formulated.

      • I have done that too and then afterwards wondered why I answered the way I did, especially when the answer isn’t an accurate reflection of what I thought. I also will do this if I’m afraid of being ridiculed for having a different idea about something. It’s not the same as what, I think you are describing, but the outcome is similar. A friend of mine taught me to say, “Let me think about that.” I like that answer for when I am interested in having the conversation, but really can’t answer the question right away without more thought.

  21. Such a wonderful piece! My son is quite verbal but he too often responds much the same way as Emma does to questions. I definitely need to help him along with his typing ability. I’m sure he’d find such freedom in being able to make himself heard and understood more often.

  22. My son also types to communicate and I like to connect with others for tips, advice, brainstorming.

  23. I am autistic. Nobody believed it because I was coherent in speaking. Its only been since Ive started writing down my scripts for my therapy sessioms that people are seeing how much pain I’m in. I cant verbally express myself. It’s just really hard.

    Im kind of tired and cant think coherent so, I just, God bless you for this post. We autistics wexperience the world too, its just we dont commumicate it in a way NTs can understand. Its been such a blessing to find posts like this, because I write them in my journal and can read them to my therapist. People like you are helping me to express things that I just lack the capability to. Thank you. There are no words that can express just how much I thank you. I can’t talk and express like a NT, but I can understand NT expression; so its just such a great blessing. As if Ive been screaming in my own language, but now i’ve found translation in the language that most people use.

    Thank you.

  24. I do this, a bit.

    My friends know that if my first answer to a question seems a bit strange, they should wait and eventually I will manage to say the right thing.

    I also usually respond to yes/no questions with NEVER! if I respond right away without thinking about what the answer is.

    And when I freeze up and panic, I say things like “do you know the muffin man?” Completely irrelevant.

    So this is interesting.

  25. Oh, I do this too! Someone will say, “How are you?” and I’ll say, “Yes.”

    • One time, someone showed me a new puppy she had just gotten. I asked her where she got it, and she said it was from a mutual friend who had fostered the mother during the pregnancy. I then had it pop out of my mouth to ask, “Oh, which one did you get?” Now, bear in mind that this whole conversation had come about because of a puppy she was already showing me. So, she paused and then answered, “Uh, well, this one…” The question had come out automatically. There was no way for me to help it. I was so embarrassed.

  26. It may be that ‘writing’ uses a different portion of the mind compared to speech.
    It does in my case.
    It is almost as if speech, for me, is in some way defective – as if speaking recognizes the inherent limitless superiority of the other person, and shudders gratingly under the lash of their socially-dominant Power.
    It is then as if one is in the presence of dragons.
    Writing – by hand, or by other means, it makes little difference – bypasses the fear-filling aspects of Now. It allows one to hide from the predator, and at the same time, speak truth – truth that the speaker owns.
    When one is owned by others as property, the truth is often ones’ sole property.

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