The real barrier to communication.

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One of my online friends has obtained text-to-speech software for her laptop and is going to try to use it in everyday conversation.

I am excited for her. I remember when I first found out about communication devices. Through the years, even when it was noted that at the times when I could not speak I could still often write (if anyone bothered to get me the materials to do so), nobody had suggested a communication device. And even when I had noticed that my communication was better in typing even when I could speak (or make speech sounds, which is not the same thing as speaking for communication, although at the time my typing wasn’t always communicative either), I didn’t know that there was any way to act on this knowledge to become a better communicator. It wasn’t until I saw Cal Montgomery switching back and forth between speech and typing at a conference that I got the idea, although it was hard to work up the courage to actually use that idea.

My parents bought me an AlphaSmart at that point in time — the AlphaSmart doesn’t have speech output (at least not without an add-on) but it is portable and cheaper than most text-to-speech devices. My friend (who is visiting right now) bought me a small Remington portable typewriter. I carried the AlphaSmart with me everywhere and used it some of the time. The typewriter, while portable, couldn’t be taken everywhere, but I was astounded to find that often when my mouth was babbling off on some irrelevant tangent that had nothing to do with what I was thinking, I could run to the typewriter and my hands would bang out clearly and coherently what I was really thinking about, even instructions to myself on how to do things. Knowledge I didn’t know I had, because I was so used to “thinking” meaning “scrounging around for phrases to use in speech” (and I then used typing merely to duplicate that feat, which was a waste of typing) that I didn’t realize I had a much more direct line to my thoughts in typing even when speech was technically available.

Once I became accustomed to typing as a means of communicating my everyday thoughts, the speech I had (which had been diminishing over the years in both quality and quantity) became obvious as both redundant and counterproductive. It caused far more pain, far more difficulty functioning, far more of that buzzing in my head that at the time was so common that I thought it was normal (and that I now instead of getting it every day only get after extremely stressful events like conferences or being filmed), and far less communication (when there was communication at all). The last straw for me was a telephone call in which I was attempting to use speech but could only reproduce the word “potato” over and over because the person on the other end of the line had been talking about eating a potato for dinner. And even the “potato” thing was taking maximum effort, the kind of effort where the entire world goes black and silent because you’re concentrating so hard only on getting a word out. Why make the entire world disappear to say “potato” when I didn’t mean “potato”, when it was possible to type complete sentences that more or less reflected my thoughts?

When I recently appeared on CNN, someone who’d met me shortly before I first got a communication device of any kind, told a friend that she hadn’t known me to be as articulate as I was on TV. I’m not too surprised. The level of precision and accuracy in my communication (as in, actually hitting the target I intend to hit, as well as actually reflecting what I’m thinking instead of something else entirely) as well as my clarity of thought in general (even if I don’t perceive myself thinking, it’s obviously clearer now than the muddle I was in before) have increased drastically since using communication devices, and even more drastically since using them full-time. Optimizing communication has meant that I have far more energy to put into everything from basic perception to complex writing.

My online friend can speak most (but not all) of the time, but she finds that typing is more accurate to what she is thinking and takes far less exertion, exertion that she could be using on other things. This is very common among auties. In fact, in 2000, there was a workshop at Autreat called “On Paper I’m Free,” the title taken from a poem by Donna Williams. It was an exploration of the use of writing by autistic people, many of whom could speak with superficial fluency, some of them all the time, but still they had better communication in writing. I submitted my old paper on part-time use of a communication device to that, which described among other things how much more spontaneous and fun my friends found me when I could use a much richer communication system than the speech I had been attempting to use. I was not able to attend, but they apparently read my paper and lots of auties had similar experiences.

The trouble is she’s somewhat afraid to use a device for communication even with the many positive aspects of it. She’s afraid that people will assign motivations that are simply not there: wanting attention, wanting to seem special, and so forth. She of course views it as I do — no different from riding a bicycle instead of walking when the bicycle would be more efficient. Professionals, though, could easily see what she is doing as a step backwards instead of a step forwards. To many people, normalcy is forwards and anything not considered normal is backwards, and the only reason a person capable of appearing normal would do something “abnormal” is for various bizarre motivations that always (for some reason) have to do with how others will see them. But as far as my friend and I, are concerned, the goal of communication is not to appear to be doing something in the normal way, it’s to communicate your thoughts in the most efficient and accurate manner possible. Which is undoubtedly a step forward no matter what that form of communication takes.

Other people might view my friend as doing this to make them see her in a different way. But the only way my friend is taking into account how others will see her is in her fear of taking this step towards communication because she’s afraid others will see her in a very negative light because of it (and will invariably interpret her actions as being about making a particular impression on them, when really it’s about optimizing her communication). I wonder how many other auties could benefit from alternative communication but will not use it because they’re afraid that they already look too normal to “get away with it,” afraid that others will regard them as seeking attention or special treatment, because they’re afraid of how their employers will react, because they or those around them have views that it’s only when communication completely and totally breaks down entirely that a person should have a way to communicate better than they already do.

I’ve watched a few auties now learn of and use alternative communication, and I have never seen it do anything less than enrich their lives greatly, whether they could speak (by which I mean “put their own thoughts into words”, not just “generate plausible sentences”) all the time, part of the time, or none of the time. The only barrier to them doing this successfully has been the attitudes of other people towards their use of the communication devices. Attitudes of disapproval, condescension, and accusations of manipulation. If people would stop reacting this way when other people attempt to communicate more efficiently, then thousands if not millions of people would be able to communicate far better than they do right now. I wish my friend all the best of luck, and I wish anyone who gives her trouble over it to shut up already and get over themselves, and better yet to learn about how much more enriched her life is going to be by this method of communication.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

52 responses »

  1. Good for your friend. I only wish alternative methods of commucication could be found for all my autistic friends who have, basically, none.

  2. I’m trying to get such device/software to myself right now. Actually I got this idea after watching your amazing videos. It just never occurred to me before, that way of communication, it seems alternative communication for autistics is not even a practice in my country (can’t see why). I can totally relate to your friend’s fears – I just can’t imagine how people will react, but I’m 100% sure it won’t be pretty. Don’t think anyone in my surrounding will understand my decision or support it, to say the least. But the idea seems so shockingly… freeing, it’s to seductive, just impossible not to try it. So I’ll do it anyway.

  3. There are a lot of alternative methods of communication for people who have no formal communication system. The trouble is mainly in getting them to people. People are inordinately afraid of and resistant to the idea of any sort of autistic person (whether a person with no speech, a person with speech that doesn’t mean anything, a person with speech that intermittently cuts out, a person for whom speech is exhausting and interferes with other skills, or a person with speech that could be made better by typing, all of whom equally deserve an AAC device) getting an AAC device, for some reason. It’s seen as a step back or in the wrong direction, even for people who have no speech to begin with. A staff person I used to have who was training as a speech pathologist said they don’t even teach about AAC in her degree program. If they want to learn about that, they have to do it on their own money and time because speech is so highly valued in that field that alternatives are often shunned or scorned for anyone. I view pitting one kind of person who needs AAC against another (even subtly) as if it’s a zero-sum game, to be counterproductive.

  4. It is sad when people and some “experts” do not understand how much energy and effort some auties must put into producing oral lanugage. If speaking is causing so much inner-turmoil/stress and saps so much energy, then it seems to me using an alternative method of communication makes perfect sense. I am sorry that your friend has to worry over what others will think. If using a communication device is better for her, I hope she goes for it. It would be step forward to me.

  5. I spoke with a speech therapist who emphasized using methods to augment communication so that a majority of people would understand, rather than as a means for the auty to express thoughts in a meaningful way. In went something like this. There is a way in which a particular person has learned to communicate “yes” and “no” that a casual observer would not recognize as communication. I was around this person for over a month while she was engaging in this communication and I was totally unaware that is what she was doing. It was not until someone mentioned to me in a conversation that pointing here meant yes and pointing there meant no. A light goes on and I suddenly realize she had been doing this all along.

    Here is the kicker. I also learned that her particular way of communication yes and no was discouraged because of the reason I missed it. It is unorthodox but it makes sense to me, as it simply entails touching the left shoulder for yes and the right shoulder for no. It’s simple and effective. I know now why she touching her shoulder, it is the only meaningful communication she and I have right now.

    Some claim to be able to use Facilitated Communication with her, though I have recently discovered reports that refute those claims within this person’s past history. I was at my wits end because I could find no way to communicate with her, until just yesterday when I discovered her shoulder talk. I believe it the window I have been looking for to reach her.

    Amanda, may I ask what he meant when Cal Montgomery said in a footnote:

    People on whose intellectual support I was dependent during the writing of this piece include Amanda Baggs…

    Is he referring to discussions with you and the others about the content of his writing or is he referring to something, which has not occurred to me?

    Jane—

    You made the comment that you wish other forms of Augmentative Communication were available for those who have none. As someone who is neurotypical and working with someone who has a different neurological mapping, I am particularly interested in communication. Do mind expanding on your statement? Do you mean it literally? As in not having the communication devices or were you referring to some aspect of their communication deficit?

  6. I recently started using AAC for conversation, and it’s been AMAZING as far as being able to articulate what I mean to say, and giving me an enormous amount of energy I didn’t have before. Conversations that would knock me out for a full day have almost no resource drain on me if I type.

    I was already accustomed to using a notebook when speech failed me entirely, but I usually didn’t resort to that until I was almost completely out of energy to begin with.

    Luckily I’ve had a lot of support for switching to AAC from my therapist (who was so shocked by the improvement from AAC that she told me to immediately start using it as much as possible) and friends, but it’s taken me a very, very long time to get to the point of comfort with the idea.

    Your writing and Joel Smith’s writing were the primary sources of the idea of trying AAC for me. My life is suddenly getting remarkably easier; I feel like AAC may change my life completely for the better.

  7. I’m thinking specifically of my 19 year old nephew who has tried something called facilitated communication, lots of speech therapy, everything and anything available since he was 2 years old. ABA has been most effective. He is now using PECS for some requests (mostly food) and does some headshaking. He has almost no speech, just a very few noises. His receptive language seems really very strong.

  8. More power to your friend. I haven’t courage to face down the reactions, or I’d use some form of text communication for offline as well as on, at least some of the time.

  9. Jane—

    I am working with a twenty-year old woman who uses no speech. I witness her using Facilitated Communication (FC) and I am not convinced it she who was communicating. May I ask what your experiences have been with FC? Has a facilitator demonstrated it and you too were not convinced of its validity? During the time my student was facilitated she was very communicative and quite articulate. However, without the facilitator she exhibits no communication on the keyboard other than random typing. (I am excited about trying the shoulder touches for yes and no now that I am aware of that form of communication.)

    Does your nephew respond with yes and no in any manner? You say he seems to understand when spoken to, so does the student I work with, unless it is more complicated than a couple of steps.

    If I am being too intrusive just ignore my questions.

    Dora—

    I say the same to you; if I am being intrusive, I apologize and just ignore my inquiries.

    I am curious about your reference to “a conversation knocking you out for a day.” Is it due to the fatigue of searching for vocabulary to express your thoughts?

    I am interested in what goes through the mind of my student. At times, she laughs spontaneously and at other times, she looks at various locations in space. Sometimes, while doing these things she also holds both hands level with her eyes and moves her fingers, but she doesn’t look at them.

    Me personally, I cannot say much goes through my mind. I know some people’s minds race when they try to go to sleep, if they are worried about some future event. Though I have experienced that only a couple of times in my life, I am aware of what it feels like. Generally, though, my mind is quiet but I feel moods. In other words, I sort of feel heavy when concerned and maybe slightly giddy when feeling particularly happy. Other than these vague and sometimes strong, nebulous sensations, I do not notice what is going on in my mind much. I do contemplate often, but it is not very vivid. When I observe my student, I wonder what she is thinking, as it seems her mind must be quite active and yet we only communicate in the most primitive ways.

  10. I am someone who passes well, and the fear of being seen as having some weird psychological reason for even just writing on a notpad (or PDA), instead of speaking, does hold me back.

    I can speak pretty much always, but it’s draining, inaccurate, & exhausting. (And lately, it’s disintegrating.) But the worst part is how disconnected I feel from speech. It’s as if it isn’t really me speaking. Well, some times it’s not as bad as others, but overall I need options, and prejudice tword any alternative communication really gets in the way.

    (Not that I’ve given up, though. First brief foray into the world with notepad & pen communication didn’t go so well, but it’s increasingly less a matter of choice with this stuff. “‘Fake it ’till ya break it.’ ‘OK, done. So, whadda I do now?'”)

  11. Steve- I do not mind telling you about my nephew. His parents (my sister and brother-in-law) dismissed FC as a sham, at least in his case. He was supposedly answering math mutiplication questions at age 7 at school on a FC board, but my sister doubted this and felt that he did not have the number-sense to do this. His teacher also reported that my nephew was “mad at his dad” and “mentioned going to a baseball game” and some other things that just didn’t ring true. After a few months of the school trying to sell the FC idea to my sis and bro, they totally dismissed the whole idea. I get the impression that this was the school’s way of trying to convince the family that inclusion was the best setting for him. They finally decided on a more intense, life-skills type education with ABA. At this point, his parents and sometimes the rest of us, can tell his “yes” and “no” by the way he shakes his head- most of the time. If you have any ideas for me, I would love to hear them. His parents are pretty wary after so many years of trying to get him to initiate any type of communication. They are currently advocating very strongly for him to be as independent as possible with his receptive skills and his PECS book.

  12. I wonder how many autistics in the working world would rather (and do) send emails to their co-workers (or I guess they can use an inhouse Wki, too) rather than try to talk to them, even though they might be only a few feet away.

    What do you think about sign language, for within famiies, at least? I’d like to see speaking (verbal?) autistic children taught sign language so that it’s an option for them when they can’t speak.

    Recently, I had an experience that used to be fairly common, I was in a bad mood and an adult relative was in the car with me and friend was along for the ride. The LAST thing i wanted to do was talk. I didn’t hate them for being in the care (I was driving) but I did not want to talk, it’s harder to talk when I’m stressed and angry, and yet what can I say? I’m sorry, I won’t be talking for the duration of the ride home, don’t take it personal.

    Instead my relative (not one of my kids) said something that I felt needed to be corrected immediately (it *didn’t* need to be corrected immediately, if at all) and I lashed out at him/her. The relative said something to the effect that I’m always like that… and I said, “no, what you said was wrong….yammer yamer” and then there was silence for the rest of the car ride. I was thinking, GREAT! Now they think I’m a big jerk. Why couldn’t they get a ride with someone else since all I wanted was to be alone….

    That’s not such an autistic experience I guess, but still, I wish they’d just let me be quiet and not make a big deal out of it.

    I also wonder if I could have typed out my thoughts or said them in sign if they’d have been less cranky…. maybe that’s just wishful thinking.

    My solution is to avoid people most of the time and avoid the stress of saying the wrong thing (pragmatically more than semantically) and feeling like an idiot.

  13. Sounds off topic, perhaps, but I’m interested in the other side of assistive technology-being understood by a person who is taxed by spoken language. One of the hallmarks of autistic “functioning” that people seem to be so adamant in judging is expressive language. A chatty kid, especially one that uses intonation and pitch, is seen as “high functioning” or not autistic at all, maybe Asperger’s. When people make these judgements, they neglect whether or not the person has acquired sufficient receptive language to fully participate in a verbal world. That is, can they follow a normally paced conversation or monologue, with all its jargon, vernacular and emphasis? The schools, regardless of expertise or interest level, seem to consistently overestimate how much an autistic person can aurally digest at any given time.

    I have used visual aides, written schedules, sign language, et al to relay information to my son. (He’s 7 and considered to have “age appropriate” language skills) I have also found adaptive language for people who are otherwise language impaired (Alzheimer’s patients eg). But it’s perceived by others the same way you are saying AAC is perceived, a step backwards or static.
    It doesn’t matter how many times I explain it to professionals, they keep insisting that my son always knows what is being said and should be able to follow through. They miss the connection between him using visual aides and following along versus abandoning the aides and “being defiant” or “nervous”.

  14. Goader (aka Steve)–

    Yes, in part it’s due to searching my vocabulary for words, but it’s more complex than that. I wrote a bit about the experience for me of communicating here. Finding words that connect to thoughts, figuring out which meanings are correct, tracking grammar, trying to decipher ambiguity, are all exhausting. Sometimes just deciphering the sounds of speech or remembering how to make my mouth and vocal chords move is exhausting. Sometimes it takes so long to find the right words that I don’t have anything left over to actually say them. Switching constantly from the part of me that processes meaning and the part of me that processes speech–which are totally different mind-states for me–is exhausting. When I type, a lot of those things aren’t issues, or aren’t as difficult. I haven’t totally figured out all of the answers to your question in ways I can communicate yet, just some parts.

  15. I’ve seen the same phenomenon on mobility aids (if you can barely manage to get around unassisted, don’t use crutches. If you can barely manage on crutches, don’t use a wheelchair), and from what I’ve seen, it stems from a strange assumption about disabilities. Basically, it’s the idea that for a disability that consists of a limited ability to do something (as opposed to an easily-recognized inability to do whatever) then assistive devices are somehow weakening. Like if youget more more exercise/practice doing X, and you’ll be able to do X more. But being able to manage without doing X means you won’t get the exercise, and you’ll never learn.

    Now sometimes, more use of an ability can mean it gets stronger. Some things do respond to the exercise theory. And I think a lot of professionals and caregivers cling to it because they don’t entirely understand why it works in certain circumstances and not others. It becomes one of those “Well, it might work” things. So parents push, staff pushes, doctors push, and teachers push, not knowing if they’re pushing a skill that can be developed or not. And people grow up thinking that straining themselves all of the time is normal, and it doesn’t matter how tired, stressed, or overloaded they are. And if someone decides to stop pushing themselves, stop forcing themselves to be normal when they haven’t suffered visibly enough to prove to others how difficult it is, accusations of laziness, attention-seeking, and the dread “not wanting to get better” get tossed out.

    If there’s one thing parents, educators, and disability professionals should know, it’s that some things will always be a strain. Some things don’t actually become easier with increased use, and it may be be that using the assistive device instead of constantly straining one ability to the max will allow someone to do more overall.

  16. J — what sort of amuses me about that one is, before I got a wheelchair, I didn’t get anywhere close to as much exercise as I get now. Because I was mostly stuck in the house, and mostly stuck in one part of the house at that (that last part didn’t change until I got into wheelchair-accessible housing).

    I remember my dad having doubts about the wheelchair until I raced him across a parking lot in it.

    People also don’t realize how hard it is to push the kind of chair I use. If a person has no trouble walking, walking is hands-down easier than using a foot-powered wheelchair. An ordinary person who walks could not sit down in my chair and get very far in it. It uses legs, but not the same muscles as walking. You have to train those muscles before you can get even a modest distance.

    The amount of gains, including in exercise, that I’ve experienced using a wheelchair part-time (and I do still walk when I can) are quite impressive, but some people don’t get how it actually works and assume laziness etc. (I use it by the way for some variable movement issues that have gotten more prominent with time, that have brought with them stamina problems, as well as pain. Gupta made some sort of remark about me using it so that I could communicate better, but that was actually a combination of misunderstanding something I said and oversimplifying the long complicated answer I actually gave when asked.)

  17. I believe encouraging the use of writing could be useful for Aspies, as well–not near as crucial for communication as it could be for those whose speech is absent or hard to use; but very useful all the same.

    As an Aspie, my experience of verbal communication has always been of something that’s just a bit too fast and imprecise. I get hung up on literal meanings; I hear the hum of the air conditioner instead of the person’s voice; I can’t pick out one voice from the background babble of a restaurant. My hearing is only on the low end of normal–it’s casual, quick, subtext-rich speech that’s annoying to me.

    Most people seem almost telepathic in their ability to use maybe a 40-word vocabulary, if that, to communicate abstract, emotional, rather refined ideas. For me, it takes a much larger vocabulary; because, unlike most people, I don’t use gesture/tone-of-voice/tempo/etc. to communicate meaning efficiently.

    However, when I write, I’m suddenly capable of communicating just as efficiently as anyone. All that subtext can be incorporated into shades of meaning in the words, into connotation, into the selection of exactly the right word.

    Like the majority of Aspies, I’m perfectly capable of communicative speech; but my communication is much better when I write. Additionally, though I think in concepts and not in words, I find that writing down my ideas helps to crystallize the logic and the concepts–to make them more precise.

    I believe teachers ought to encourage written communication on the entire Spectrum, whether or not speech is possible for that particular person. Isn’t the quality and dependability of your communication more important than using your vocal cords to communicate?

  18. Thank you for this topic. You might have been describing me when you talk of someone that can talk superficially well. I have a whole host of difficulties with the spoken word. Namely a lot of difficulty initiating, some central auditory processing problems (occuring not all the time but enough to make an impact, yesterday for example I had about five instances of hearing what turned out to be perfectly simple phrases as though they were in a foreign language in the space of an hour, though this is high for me), voicing my thoughts midtopic with no explanation, not knowing when to enter into a conversation, pausing in the wrong places when talking, not being able to often talk of my wants and needs easily (but I can rattle on about something that interests me), having the words in my mind but being unable to get them physically out, possible selective mutism as a child, talking through other people and a lot of tangential speech. I also used to talk incredibly fast and though I can still be pretty speedy, I’ve slowed down a fair bit now, due to years of practise. When writing I am far more fluent, far more able to get my point of view across.
    One of the best examples of how effective the use of written communication as opposed to spoken communication has benefitted not only myself, but also my autistic son came when I was first starting to seriously notice he had significant differences with his speech and communication to other children his age (the other signs were there but I hadn’t realised they were significant). The health visitors were noticing things as well and were asking some questions, which I would reply to, but would come across as hesitant, unsure, a bit disjointed and not being able to explain. Because I struggle to initiate I couldn’t articulate the full extent of why I knew he was different. Then one day I simply wrote down what I wanted to say, I explained about my childhood and how difficult communication and expressing myself verbally had been for me and how my son seemed to be having the same difficulties. It worked wonders, they picked up exactly what I had been trying to say, agreed he needed assessing and he is now diagnosed and with the support he needs. I will never forget either the look of surprise on the health visitor’s face as she read the differences in my ability to write and my ability to speak.

  19. Dora—

    I think I understand better what you mean. We can all relate to searching for accurate vocabulary; magnified a few times would be exhausting. Difficulty finding the right words is easier for me to relate to than something else you said (and Amanda has alluded to it as well). You said, “Switching constantly from the part of me that processes meaning and the part of me that processes speech–which are totally different mind-states for me–is exhausting.” Previously you mentioned, “[R]emembering how to make my mouth and vocal chords move is exhausting.” For me, a subconscious system in my brain handles the mechanics of speech and I am unaware of its (subconscious system) presence. Apparently, it works in the background and is silently active. For you, does this subconscious system not function very well, or is it too noisy to be useful?

  20. I see similar kinds of issues with deaf/Deaf children/adolescents and speech therapy. Sure, for SOME of us, speech therapy is reasonably effective and we end up with speech that is fairly usable a good amount of the time (though I still use back-up methods like writing things down in certain situations, like in noisy restaurants when I need to ask the waiter something complicated). So in my case, and plenty of other cases I know of, I don’t really regret the time I spent in speech therapy much. The only real “waste” was in elementary school when I ended up with a series of speech therapists who had no prior experience with DEAF children, only with hearing children with other types of speech “impairments”, so I didn’t make as much progress then as I did in preschool/kindergarten or in middle school/high school when I had speech therapists who specialized primarily in speech therapy with deaf people.

    But many deaf students are forced to continue taking speech therapy all the way through their last year in high school even long after it has become clear that their speech just isn’t really going to be comprehensible to many people except maybe family members and others who are very close to them. If a deaf child HAS HAD good quality speech therapy (not the kind of speech therapy I had in elementary school, but with someone who understands how to explain enunciation to a kid who has never heard many of the sounds s/he is being asked to pronounce) and STILL isn’t making substantive progress after years and YEARS of speech therapy … and they hate it and want to stop … then they should be allowed to do so. And just use that time for more worthwhile things, like brushing up on their English skills or taking an additional elective course or whatever.

    And I can see the same parallel with “crutches vs wheelchair” etc. A friend of mine who is in a position to know has pointed out to me that just about any location that is accessible to someone on crutches is also accessible to someone in a wheelchair, so really, there is often very little pragmatic advantage to crutches over a wheelchair, at least in countries like the United States where ramps, wide doors, etc. are relatively more pervasive than they are in most developing countries (with a few exceptions). (Though I realize there are exceptions.)

    I remember once reading a book written by the parents of a girl with cerebral palsy who was born … I guess back in the 50s or whatever, in some time period when most people still thought that people with all types of disabilities (not just autism or a few others :-( ) should be just stuffed away somewhere and forgotten. The girl learned to walk (I forget if it was with crutches or not). But when she was about age 18 she started struggling with the decision whether to continue walking or use a wheelchair. And apparently she was initially afraid to tell her parents this because she thought they would be upset or disappointed in her if she switched to a wheelchair. The parents then hastened to reassure her that they had only pushed her to walk so she could have OPTIONS, and it was really up to her what she wanted to do, they would back her 100% on whatever she chose. And she did choose to go with the wheelchair and they supported that.

    I don’t remember now what I thought when I first read this book (I think more than 20 years ago), but it seems evident to me now that if the girl really believed her parents would be upset if she started using a wheelchair then she must have felt a lot of pressure all long to view WALKING as the only real acceptable option, and they weren’t very effective in communicating to her that she had other options. The parents were mostly VERY progressive for their time, but if I had a way to go back in time whatever number of years ago and give them one piece of advice, it would be to find a way to communicate more clearly to their daughter that walking is just an OPTION that is worth exploring to see if she finds it helpful, but not the be-all and end-all if she can’t do it or finds that it just isn’t worth the effort. Then she wouldn’t have agonized so much over the choice.

    And it also sounds like one of the many things that should be changed in education for both autistic and deaf children is to take the same approach with speech: if you can do it and find it worth the effort, sure, great, go for it. If you’d rather do something else like sign language or typing or pointing … or even standing on your head if that helps you communicate! Or a combination of all the above. Then, sure, great, go for that instead.

  21. Jane—

    The PECS concept is an interesting one. I think helping a person become as independent as they desire to become is important.

    I am new in the area of Autism Spectrum Disorder and have only worked with my student for couple of months. Therefore, I do not know that I can offer much in the way of advice. I can identify with your sense of frustration when trying to find a means of communicating with your nephew. After all, what other ways do we have of interacting as humans than different forms of communication? I am convinced that the form of communication is not nearly as important as the communication per se. With this in mind that I embrace my student’s ability to indicate yes and no by briefly pointing to her shoulder.

    I encourage you to observe your nephew for signs that he is communicating with you already, but you are not aware of it. One-way to determine this is to ask him if he wants something, you know for fact, he will want. For example, if it is close to mealtime and he is hungry you can ask if he wants a favorite snack. After the question, watch for any fleeting signs he might make. They can be very brief and inconspicuous, I know because I dismissed my student’s shoulder tapping as a tick.

  22. I don’t even know where to begin….

    I guess this explains Ben’s unease with language. He halts and stutters…unless he is at home. Getting novel conversation out of him even at home is like pulling teeth, and always has been. How can I help him to compensate for the ignorant masses…a question I mostly ask myself.

    I want to say something else. It is not only autistics who suffer. I have been teaching a young girl with severe cerebral palsy who has little muscle control, and no voice, either. It took 3/4 of a year to come up with a communication system that is non-technical and so simple I can’t believe it took that long. Her first word, independent of others talking for her and waiting for her to smile, was “girl”. Next, she spelled her Dad’s name. She spelled “van” for the vice-principal when asked to tell him what she recently got, and in the 5 minutes it took, he cried.

    It was so difficult to “make” her mother look to her independent thought as a positive thing. It isn’t the “normal” way, and it is enormously time and energy consuming for “Betty”. I continued fighting anyhow, as I wanted “Betty” to always have a release for exactly what was on her mind. CP communication for kids as severe as “Betty” becomes “fossilized” in time as they get used to having no voice in matters, and life becomes a series of passive communications.

    COMMUNICATION was my primary goal this year, for each of the kids to the extent possible. I would not have had the guts had it not been for what you taught me. I stepped on anybodies toes to get to that goal, and “nobody likes me” except for my aides and a few others who finally caught my dream. The speech-pathologist accepted it because it is very difficult to individualize communication help, so it had been left undone for years.

    I don’t give a FRA who likes me…good thing I like the taste of worms!!!(“Nobody likes me, everybody hates me, I’m gonna eat some w-o-r-ms…big fat juicy ones; long, slim, slimy ones;itsy bitsy fuzzy wuzzy w-o-r-ms” was a popular childrens song when I was a kid….)

  23. Rose, glad to know that you’re pushing so hard to find a way for each child to communicate.

    Communication rights has always been a very sensitive issue in the Deaf community (In our case, it goes BOTH ways in that we need accommodations not only to express ourselves but ALSO to gain ACCESS to the communication by OTHER people that goes on around us. I gather this can sometimes be an issue for some autistic people too, though generally for different reasons or causes–for example, verbal communication going too fast. Too many hearing people think that if THEY can understand US that there is necessarily no communication barrier. They forget too often that DEAF people may still have problems understanding THEM–and have every bit as much right to have access to what THEY say as they do to what WE say.)

    This is a topic that obviously strikes a very strong nerve in the autistic community as well — just judging by how quickly this topic thread has accummulated so many comments, including from some who I don’t think have posted in this blog before (or at least not much).

    Speaking as someone who has frequently been denied full access to communication (in my case more often the receptive side of things), I can think of only a few human rights that are more fundamental than the right to COMMUNICATION for anyone who wants it. (Even more fundamental would be things like RESPECT for one’s intrinstic value as a living being … even if no consistently effective means of communication has been discovered — YET.)

  24. Linda Burkhart (lburkhart.com) has a great website with many articles on augmentive communication. Articles are both on how to teach individuals to use aug-comm, why to use aug-com, how to find aug-comm that is effective for the individual, and articles about aug-comm use as it relates to specific disabilities such as Rett’s, Autism, physical disabilities. I know I’ve posted her link before, but it really is a good one.

    I have used a variety of strategies to help my students communication. I think it really depends on the individual as to what works for them. Their comm system may change over time as needs change and technology improves. The aug-comm specialist I works with also frequently talks about having back ups, so that if the high tech device is on the fritz,there is still a way to get thoughts across.

    One student I had, who has ASD, we had tried a variety of things to get him interested in communicating. When we started using voice output, we found that his spoken language (speech) increased dramatically. It was like if he had control over how many times he could hear or practice certain words, they were then able to come out verbally with greater ease. He was very young, so maybe his brain was more flexible at that point. He still uses aug comm, it is easier for him to converse that way (versus single words spoken). I’ve seen some therapists make the mistake of taking away devices as soon as some verbal language comes out. Its good to have spoken language (see back up) but I’ve seen much higher communication skills when aug comm is still in place.

  25. Side note … for people who would like to pursue alternate methods of communication but are afraid of how others will react … just brainstorming out loud here, but … maybe one approach could be to start using the alternate approach with people you don’t know well enough to care what they think, or who will not know you well enough to realize that typing or writing or whatever is not your usual mode of communication. (For example, the next time you go to some restaurant or store you haven’t been to often enough for people there to know you well.) Give yourself time to see how it feels using an alternate mode of communication in general, in a context that feels comparatively “safe.”

    Next, think about the people you interact with on a regular basis (particularly friends and or family). Who seems to be the most understanding or aware of autistic issues in general? Who seems the most inclined to listen to you when you explain your needs in general and just take you at your word (instead of accusing you of laziness, exageration, whatever)? With whom do you feel the most comfortable? Talk with that person about your communication needs and your desire to shift to alternate modes of communication at least part time, and use start typing (or whatever approach) with that person. Maybe show them this discussion thread to help them understand.

    After you get used to using the alternate communication approach with that person, then maybe that person could help you figure out how to take things to the next stage (by using it in more interactions with a slightly, or much, wider circle of people). They could maybe even help you in talking with other friends/co-workers/relatives/whoever to help them understand why it is so important to you to expand your use of alternate communication methods. And you could expand your use of the alternate communication approach one person at a time, or one circle of people at a time. Even if you still end up too nervous to bring it into certain contexts, then maybe at least using the alternate approach in other contexts would help save your energy for when you really do need speech the most?

    Does this strike anyone as a helpful strategy? Or am I way off base? Or too presumptive in suggesitng this?

  26. Steve-
    Thank you for your suggestions- yes, I have done those things with my nephew. We actually have a very close relationship even though we don’t “communicate” conventionally at all. He usually looks at me and either smiles a lot or laughs while I am talking to someone else. I don’t know what’s really so funny to him, but I’m glad he’s enjoying me and I think its a sign that he’s a pretty happy guy.
    Good luck with your new student. You sound very committed and thoughtful in your work. So important.

  27. I hope I’m not overstepping my bounds here (especially since I’ve already rambled on in so many posts in this thread), but one question comes to mind:

    What about communication access from the other direction?

    I gather from things that some autistic people have said here and elsewhere that sometimes, even for some hearing autistics, there is an issue not only with self expression but also with comprehension, ranging from “Brain Totally Not Operating In Linguistic Mode Right Now” to “I Can Understand This Conversation But It’s Consuming Enormous Amounts Of My Psychic Energy.”

    I see people talking, here and elsewhere, about how to make communication accessible to autistic adults (and, in the case of parents, teachers, and other professionals and loved ones, autistic children). But this always seems to be in terms of how to enable the autistic person to EXPRESS him/herself TO OTHERS in a way that OTHERS, (especially NTs) will understand. Maybe I’m reading in the wrong places, but I don’t tend to see as much discussion about how to make “non-autistic” communication (and situations, meetings, etc.) more accessible to autistic people.

    I don’t know if this is because relatives, professionals etc. often don’t even realize how much the autistic person might be missing (because they’ve learned to cover up, or because they consistently spit out appropriate “scripts” that match the conversation even if they don’t actually match what’s in the autistic person’s head, or because they DO understand SOMEtimes even if they don’t ALWAYS understand) … or if this is part of the general problem where society tends to put more value on the rights of NON-disabled people to understand DISABLED people and, comparatively speaking, devalue the rights of DISABLED people to understand OTHERS (I’ve been in some highly annoying situations where I’m peacefully talking in sign with another deaf person in a group of hearing people who normally NEVER bother to make sure we have any access to THEIR communication, but they want to know everything WE’RE saying) … or if something else is going on.

    Or am I completely misunderstanding the communication needs of some autistic adults in the first place?

    I don’t know how it would work for autistic people, but as a deaf person, I might request a sign language interpreter in advance for certain kinds of situations (like important meetings). Or, in other situations, I might ask the other person to slow down a little for me, or remind them that I need to see their face while they talk. Obviously I deal with a different set of communication issues. But are there similar types of solutions that would work for autistic people? How often do autistic people advocate for themselves by requesting them? Is this something that some autistic people would want to work on in addition to self-expression alternatives?

  28. Andreashettle, I brought that very issue up, #14. I had an acquaintance that wanted her son to receive Deaf Ed, even though he has severe cognitive delay. The Deaf Ed refused and she depended on some special ed teachers to use ASL with him, but that was always tenuous. In Indiana and California, there was always someone (in special ed) using some kind of sign language but here in Arizona, I haven’t seen it yet.
    Heck, in my son’s regular kindergarten class, the kids were taught some basic ASL.

  29. Thanks, KimJ — You’re right, I somehow overlooked your comment in the ebb and flow of discussion here.

    Sometimes there is a similar problem with deaf kids, where parents or teachers in mainstream settings overestimate how much the kid really understands. I remember way back at age 7 when I was at a “hearing” summer camp program where, in hindsight, I think the counselors must have assumed that I necessarily always understood them just because I could understand them SOME of the time when talking one-on-one. (They had a tendency sometimes to refuse to believe me if I tried to tell them that the reason why I was behind the whole rest of the group was because I didn’t know where we were supposed to be going.)

    I spent all summer NEVER knowing what we were going to do next, except for when we were about to go swimming (because then I would look around and see all the other girls changing into bathing suits). The rest of the day I was lost, overwhelmed, frustrated, and feeling helpless. I tried to ask them once to please simply WRITE DOWN what they wanted to tell me, but they didn’t. (Maybe they just didn’t have pen and paper on them at the time, but you would think that if a 7 year old deaf kid TELLS them that it would help her understand them that they would get a clue and start carrying around pen and paper for that purpose.)

    I read a book once by a hearing mom of a deaf boy who hated wearing his hearing aids. So at some point she allowed him to stop wearing them. She found that communication at school actually IMPROVED because teachers finally “got it” that this boy was DEAF and COULD NOT HEAR THEM, so they would do better about ensuring that they were looking at him while talking and so on.

    I also have a deaf friend who has perfect speech (became deaf in late childhood) — and because of that, most hearing people who hear her voice abruptly stop doing all the things she needs them to do in order to help her understand them (stop looking at her while they talk or stop writing things down). So she solves this by simply pretending that she cannot speak; there are many hearing people who have met her who have no idea that she has perfect speech.

    Sounds like the problems may be similar (at least in broad scope, obviously not in the cause or the details) for some autistic people.

  30. One thing that people don’t generally realize about us is that even though we seem to use fluent communicative speech a lot of the time, relying on our spoken cues can be dangerous sometimes, especially in a stressful situation. I mean dangerous to us, although maybe sometimes dangerous to others too if it was something like a situation where we were supposed to be giving driving directions. See, we have a lot of conditioned “affirmative response,” and will sometimes say “yes” to things as an automatic reflex, or agree to things, sometimes when we didn’t even understand the question, or nod and make a lot of affirmative-sounding noises even when that has absolutely nothing to do with what we’re thinking and wanting to communicate. In something like, say, a situation where we were supposed to give consent for a certain medical treatment, that could potentially be life-threatening.

    (Well, that’s even assuming that what most people perceive as deliberate communicative speech is really that. In actuality, there’s only one person– well, physical body– with whom we have deliberate communicative speech a majority of the time. With everyone else, reflex and echolalic stuff makes up a much larger percentage of it.)

    …so, yeah: the whole idea that there’s some zero-sum game between “deliberate communicative speech all the time” and “unable to produce speech-sounding noises at all” is nonsense. (And it’s very odd how people can swing back and forth between demanding “don’t you want a cure so you can always speak? how can you be happy otherwise?” and accusing someone of not being autistic or having speech difficulties at all and “faking it for the attention/to make others do things for you,” depending on what stance seems to be more convenient for them to take.

    I dunno, I can’t imagine that if I *did* prefer speaking to typing, that I could possibly keep up the act for any length of time.)

  31. Following up again with KimJ, re, the boy with cognitive delays who was denied access to an ASL environment:

    I once tutored a boy with Down’s Syndrome who was deaf in one ear and who expressed himself only through signs, at least at the time I knew him. His parents tried to get him placed into a school for deaf children because they felt he would learn more if he was in an ASL environment, but the school rejected him on the grounds that his “primary disability” was Downs Syndrome, and the only accepted students with disabilities if deafness was the “primary” not “secondary” disability.

    Acceptance of the use of ASL even with Deaf students is not 100 percent complete (some parents and educators still seem to think that there is an either-or choice between ASL and English, or signing and speech: either you learn ASL and never learn to speak or write in proper English grammatical construction or you reject sign and speak and write “like normal people”). But the impression I’ve gotten from anecdotes like this one is that there is even less acceptance of the idea that ASL is not only a VALID option for some hearing children but a NECESSARY option. And that, if a hearing kid uses ASL as an important means of communication (either receptive or expressive or both), then that child ought to have the same rights to an ASL environment as a Deaf child.

    I see some of the barriers (which I won’t go into right now because I’m sure some people are sick of hearing from me by now) but I’m not sure what the solutions are :-( Except, continued advocacy I guess, both for each individual child who needs it and maybe also there should be some better concerted effort among parents and professionals who work with hearing children who use ASL as a key mode of communication. Ditto for all children AND adults who use non-speech modes of communication in general.

  32. Yet another link, this one on text to speech:

    Text-To-Speech Please Read 2003 English, Spanish, German, French, UK English for Windows 95/98/ME/NT/2000/XP Freeware. Works in word processing programs and in e-mail. http://www.readplease.com/

    The problem with teaching asl to some students rests in their ability to imitiate, and in physical ability to make a sign. Most places that I’m aware of that use signs for kids with ASD use it as a step to verbal communication, and not as ASL. They teach “signs” not “sign language.” I’m not saying that’s right, I’m saying that’s what I’ve witnessed.

    One benefit of signs over PECs is that you can’t lose your hands, but its really easy to lose PECs cards (I often find them in my washing machine). One benefit of PECs over signs is that you have to bring a PECs card to someone. Some kids who sign don’t realize cognitively that someone needs to see the sign you are making. I’ve seen kids sing something over and over and if no one sees them, they don’t get what they need and thus get frustrated. PECs also don’t go away like a sign does. For instance, if you make a PECs request, it can remain visible as long as necessary (thus adjusting for processing time), but signs are gone as soon as they are completed, just like a word disappears the second its spoken. I would guess its also easier to give someone a PECs card or use an aug comm device when stressed, rather than try to produce signs or spoken words.

    Again, I think the choice on communication systems depends on the individual. Any therapist, teacher, whatever worth their salt should consider individual needs, not program needs, or administrative needs or cost. Besides, if something is effective, its worth the cost.

  33. And I can see the same parallel with “crutches vs wheelchair” etc. A friend of mine who is in a position to know has pointed out to me that just about any location that is accessible to someone on crutches is also accessible to someone in a wheelchair, so really, there is often very little pragmatic advantage to crutches over a wheelchair, at least in countries like the United States where ramps, wide doors, etc. are relatively more pervasive than they are in most developing countries (with a few exceptions).

    I disagree. I just added crutches to my toolbox (having split my time between a chair and walking with braces before) *specifically* because I can go lots of places with the crutches that I can’t with the chair – mostly places with stairs.

    On topic, though, it is a pity that speech/language therapists haven’t generalized from idea that oral isn’t necessarily the best method for deafies to auties as well. My family will be taking an ASL class targeted at SLPs soon – it will be interesting to see how the history of oral-only approaches is discussed (if at all).

  34. “although maybe sometimes dangerous to others too if it was something like a situation where we were supposed to be giving driving directions”

    Ohhh, this is so true of me :{. I think my husband has all but given up on me being a reliable navigator.
    Me: “You need to turn that way” (without gesturing).

    “You need to turn now” (as we’ve just past the turning as it’s taken me too long to get my words out.

    “No I can’t talk on the phone and follow the directions. Stop asking me!” (translates as I am getting stressed at having to bring up words and cope with multiple instructions).

    Not to mention mixing up left and right, losing track of where we are, not being able to articulate clearly where we need to be. It’s a complete nightmare.

  35. Ook!: Yeah. I’ve also added crutches recently, because I can still take my dog to the park in the winter if I use them, but there’s no way I could get a wheelchair in there until the snow melts.

  36. Ok, I concede to the wider circle of experts — thanks for correcting me. (The friend I’m thinking of rejected crutches for herself as an option for various reasons, with that as one rationale … but maybe it depends partly on the kind of crutches you have, how proficient you are at walking with them, and exactly where you’re going and exactly what the barriers there are?)

  37. bullet, i am with you (and that other person earlier) on the problems w directions thing. the left/right, the timing…

  38. andreashettle: there are certainly cases in which using a wheelchair is a heck of a lot easier than using crutches; I’m thinking in particular about a friend who is an amputee; the point of amputation is above the knee in both legs and he nearly always uses the chair to get around. In situations where the chair won’t do (grass, stairs) he’s *able* to maneuver with his upper body, but he often isn’t *willing* to because he says it hurts his pride and he’d rather go cuss out whoever’s responsible for there being no ramps about. He’s refused to, as several people have suggested, have prostheses made. He says that it’s in fact rather a stupid suggestion, since he doesn’t have *knees* and to walk would take him a heck of a lot more time and effort than to roll. But he certainly had a lot to say about the mindset of folks who suggested that he try walking anyway, even though it would be excruciating — something about the idea that “trying harder” to give the illusion of doing one’s best to fit into the mainstream is somehow more admirable than being, ahem, “lazy” and using an assistive device that makes much more sense just feeds sickeningly into the “hero” stereotype that gets slapped on disabled people who never asked for it.

    As far as trying out new communication devices goes, oh yeah, I’m sure that it would be easier to try it out on strangers first. But I imagined trying out a device on, say, my co-workers — and cringed. I could just see them reacting somewhere along the lines of, “What are you doing that for? I *know* you can talk. I just saw you talking yesterday, and you were talking just fine. You’re just trying to get attention and make us think there’s something special about you.” or, better yet, “You’re trying to make us feel *sorry* for you because there’s something wrong with you.” Perhaps I’m chicken, but man, bagawwk. *)>

  39. I suspect if I had that particular amputation I wouldn’t want prostheses or crutches either, they sound more cosmetic than anything. Since I’m only a part-time chair user anyway, they are a good aid to use when I do walk (especially in unfamiliar places), and far less wearing on my wrists than canes had been.

  40. I’ve been trying to get my son approved for a communication device (I can’t afford it) since I saw Amanda’s story and it dawned on me that it could work for him too — that the fact that he’s not “communicative” in the NT way very much doesn’t mean he can’t communicate and that without trying it, we may be leaving him locked into a much more frustrating, medicated world than he deserves. My son is very hard on equipment, goes through a cd player a week, scratches cd’s up beyond use within days, VCR’s and videotapes the same, gets so fixated on what he’s doing that he sits on things, steps on them, piles stuff up on all floor surfaces, etc. So the Autism Services folks at the county and his group home are pretty skeptical about spending the money to find out if my son can use the thing because of the big risk of the expensive device getting busted.

    This kid knows what he wants/doesn’t want, doesn’t trust many people for damn good reason, has given indication he can read/spell to some degree but very ocd. He loves music and slapstic humor movies. Has excellent memory/observational skills — possibly splinter skills but who can be sure without substantive communication? He just turned 23 years old. They labeled him MR/LFA, but again who the hell knows without substantive communication?

    My son’s case manager says:

    “I was just checking in to see if there has been any further
    information or identifying the use of an augmentive communication system for AC? I have asked other case manager’s about options they have worked with and the process for determining if a person is able to use a device that works is by way of an assessment from a specialist that determines what might be appropriate. I have a number for a lady that does these assessments if you want to check into this more or ask her questions maybe she can help. Her name is Jane XXXX and her number is xxx-xxx-xxxx. The reason that individuals are assessed for this is because there is some level of skill involved with some of the systems and they are expensive and it would be a great cost for someone who might end up destroying the device. My concern with AC is unless he is going to purchase a computer or device for him to use, if he breaks it….who is going to purchase another one? I’m all for supporting AC and you with helping him, however based on history I want to keep a realistic perspective also. Let me know what you’ve found out.”

    So any advice from anybody would sure be appreciated. Seems like BS to me that we can’t afford to give my son the opportunity to make a big advance in quality of life because it might not work and might cost money but we can sure afford to keep pumping drugs into him, sending him to “Alternatives to Employment” that don’t interest him, and I could go on and on but you probably get the picture as far as the system and institutions/group homes go.

    Craig

  41. Thanks, Evonne. Yeah, I think my friend’s motivations for sticking with her wheelchair are somewhat similar. In theory, she COULD use crutches, but the benefits just don’t seem worth the costs in her particular case. I guess it comes down to different strokes for different folks.

    Re, communication devices — my thought had been that by starting with strangers and working out from there would give people a chance to decide on a case by case basis whether they have the nerve to try it with a particular individual or circle of people. I was kind of thinking along the lines of a gay person deciding whether to come out of the closet. “Coming out” for many, I think most gay people is on a continuum, where some people in their lives know, and some people in their lives never will, and the exact balance of who knows and who doesn’t, and how many are in each “camp” can shift over time, especially as they leave old acquantices and co-workers behind and meet new ones. And coming out also usually happens one person at a time, with the “safest” people first and the less “safe” people either last or not at all.

    I think most commonly gay people either save the work place until the very last, after they have a strong support system in place (so if they run into problems, at least they know who they can count on for help). Or else they never come out at work at all. Probably precisely because it does tend to be the most “threatening” environment for being “different,” even if there supposedly are legal protections in place (such as the Americans with Disabilities Act).

    So my thought was, not NECESSARILY that one eventually brings the communication device to the office (at least, not to an office where people already think you are a full-time speaker), but that “coming out of the closet” as a part-time augmented communication user SLOWLY, one person or circle of people at a time, would allow for time to develop, rehearse and keep revising a “script” for explaining the rationale for using the device to a person who hasn’t seen you use it before, and also for refining an overall strategy for the process. And it also allows for time for maybe the few closest friends or family members to see over repeated exposure how much benefit you get from the device. Then they could be a supportive “ally” if you move on to use the device with a few more people (especially if with mutual friends or relatives). It also allows for time to continually assess and re-assess how many people in your life you want to know, or not know.

    Then, even if one never does bring it to the work place, one could at least move gradually toward a situation where they use the device with a certain circle of people, but continue speaking in other contexts. Then they could get at least some of the benefits, even if it’s not the ideal communication situation overall.

    From my experience in coming out as bisexual, the first year or so tends to be the most intimidating (because you don’t really know yet how people will respond, so it’s harder to decide where to draw the boundaries, or whether you have the right strategy and script for “coming out” And at the very start you might have no, or a very small, support system in place for the coming out process).

    (Though if you eventually found a job at a totally new workplace where no one ever knew you as a full time speaking person … ?)

    I don’t know if this makes any more sense (or if it is any more helpful) than what I said before. Sorry if it isn’t :-(

    But I do understand about being hesitant, perhaps ESPECIALLY at the office. I haven’t told ANYone at my office that I have attention deficit disorder, and I’ve been there for three years. Ditto (mostly) about me being bisexual.

  42. Andrea: I had meant to expand on the crutch thing further, but class got in the way. I think the situation is very analogous to the communication method discussion here. Some forms of mobility aids seem superior to others (crutches because they’re more able to deal with stairs and curbs; wheelchairs for some of the reasons mentioned above; walking because it’s ‘Normal’, etc), so moving from one to another is often seen as a “step back”. I know when I started using crutches instead of walking unaided, a lot of people I know processed that as an unfortunate event. From my point of view, though, it gave me a lot more freedom.

    Similar to how a given communication method may seem more cumbersome or less useful to an NT or a hearing person, but actually increases communication. Actually, to extend it further, it’s not that outsiders get the spectrum of “usefulness” wrong. It’s that the spectrum doesn’t exist. So while I prefer my wheelchair to using crutches, and use the crutches as a fall back, some people prefer their crutches and use a wheelchair as a fall back. To tie this to the communication analogy, I’m deaf; I prefer to speak, but I will finger spell or sign with my brother (or whoever can understand it!) when that’s not working. Similarly, there are people whose primary mode is sign (of whatever form) who will fall back to speech when all else fails. Presumably there’s an ASD equivalent here, but I’m not clued in enough to extend the comparison that far.

  43. Craig, I wish I knew what to suggest. It would be a frustrating situation for me, too, if I were experiencing it.

    Is there any way you can experiment with methods on your own at low cost? For example, if you wanted to experiment with pictoral cards or communication boards, could you print some appropriate off the web (if such are available somewhere) and try them out? Or if you wanted to find out if he can type, try sitting him down at your own computer? I know this wouldn’t be ideal, but I’m wondering if a little creativity and resourcefulness would help any.

    Have you looked into facilitated communication at all? I’m not pushing for it (or against it). Some people swear by it, some say it’s a complete sham. From the very little I’ve read, I suspect it might be a mix of the two — ie, that it can be done correctly with someone who is appropriately trained, so that the autistic person really is able to express him/herself accurately by that approach at least some of the time; but that there are also times (or individual facilitators) when it’s not done correctly so that the “facilitator” is subconsciously influencing what the person types. And even apart from these issues, facilitation isn’t for everyone, in part simply because some are already able to type or otherwise communicate independently.

    So if you did pursue this, I would suggest first looking carefully into what the “best practices” are in facilitated communication so you can at least steer away from the bad kind. Amanda has written a bit about facilitated communication in this blog (though she doesn’t normally use it herself … except, apparently, sometimes her cat will be her facilitator) — if you look at the categories at the left hand side of this page for “facilitated communication” maybe you can track down a few links to get you started. If that’s something you think you want to pursue.

    Also, to what extent have you been networking with other parents, eg. via email discussion groups and so forth? In case other parents have needed to face similar obstacles, found ways to overcome them, and might have ideas?

  44. Craig:
    I’m not sure what communication system it is…maybe Dynavox (SP?), that the salesman start off by throwing it against the wall. Spending $8000 for a system, it should not be ‘fragile’.

  45. Craig:

    There are some links for free symbols and photos. Check chilrenwithspecialneeds.com. Click the downloads section and follow the links. Files are in .pdf format, so should be printable from anything. There are a ton. See also http://trainland.tripod.com/pecs.htm. Scroll toward bottom of page for PECs files.

    One thing you may look at with the comm device is trying switch access. There are switches now from Ablenet that are wireless. Switches are pretty study. You could set up a computer where he couldn’t get at it but could still see, and have access from the switches to scan and select. There are some really great software out there to teach people how to use switches. Again, see lburkhart.com for ideas, especially 2 switches for success.

    Intellikeyboards are also pretty study, and come wireless now (see intellitools.com). You can make overlays for the keyboard to have symbols, pictures or letters on an overlay.

    Dynavox (and I’m sure other voice output devices) also come with keyguarrds. The tango (ablenet) is also supposed to be pretty sturdy.

    Most of the companies like dynavox will send someone out to do a training or help do an assessment.

    PACER center, in MN, has a link for people selling used aug comm and other AT equipment. http://www.pacer.org/stc/super/

    Check your state, there are some lending libraries where you can go in and try stuff out.

    Also, with devices like dynavox or vanguard, you can use them to operate any device that has a remote control.

    Have you tried a plexiglass like cover over the TV vcr area? Local sign shops probably have some thinner then plexiglass yet still thick enough not to allow access plastic. They’d probably give you a sheet, and help you cut it to size specifications.

  46. Rose, you and i happen to live in the same state, and i wanted to ask you something about local autism (dx &c.) resources for my husband and possibly myself. would you consider giving Amanda permission to pass me your email address? thank you in advance.

  47. To come back again to the crutches v. wheelchair thing, it depends a lot on how well and how comfortably you can use crutches. For me, going up a flight of stairs on crutches is a pretty minor thing, and even a few flights doesn’t leave me more than slightly out of breath (and going DOWN stairs is almost no effort). So using crutches makes things way more accessible than wheelchairs because I don’t have to find the ramp or the elevator, or whatever it is.

    However, for someone with a different disability, it’s quite possible that the time and effort it takes to get to the back of the building and find the elevator is a lot less than to just head straight up the stairs. Or that going around to the ramped interest is easier than dealing with steps. It really depends on the physical capabilities, and the important thing is to remember that the guy who can barely use crutches isn’t going to turn into me if someone takes away his wheelchair, I’m not going to start walking normally if someone steals my crutches, someone who can accomplish a functional minimum of speech isn’t going to completely lose all capacity to speak, ever, if given an augmented communication device, and someone who types or writes or uses a communication board or whatever method is not going to develop functional speech if you take away methods of communication that work. It sounds obvious, but there are a lot of people who seems sincerely convinced that assistive devices destroy abilities.

    Oh, and on the step forward-step backwards thing; I recently found out that a lot of people assume just by looking at me that day to day actions are constantly painful and exhausting (because my legs move oddly). This is not true. This is not remotely true. However, I did have a stretch a couple years back where I had to do without my crutches for a month. I could manage (work and back, shopping, some social activity) but every day I was tired and sore from walking unassisted all day. Not agony, but I went through more asprin that month than I usually do in a year. So when my crutches turned up, I was thrilled. But a great many people I knew were utterly dismayed that I was back to using the crutches. Apparently, they’d all assumed I’d experienced some radical improvement in my condition that enabled me to manage without them (where I’m actually just not inclined to live under a strain I can barely manage when there are better alternatives), and that those lovely bits of metal which meant I could go farther, do more, and have more energy were bad news.

  48. J

    re, forward/backwards thing

    I think doctors can fall into that trap also. A while ago, I had a temporary problem with my foot (entirely unrelated to an entirely separate chronic problem I have with the same foot, though most people have trouble processing that) called planchar fascia (sp?) — basically a heel inflamation problem that made it very painful to walk. We already had a pair of crutches on hand from some years back when my partner had a temporary injury of her own, so I started using the crutches for a while. Sure I *could* walk without them. The doctor even SAID so, and said I didn’t need the crutches. No, he didn’t insist that I give them up or anything, just said they weren’t necessary.

    But using the crutches freed me enormously to go much further than I could bear to go without them. For someone like me who depends entirely on a combination of public transportation and my own two feet (with or without crutches or cane) to get around, that means a great deal. I couldn’t understand (and still don’t really get) why the foot doctor felt he had to say, “Oh, you don’t need to use crutches.” Planchar fascia is PAINFUL. I would think pretty much anyone with that problem (if severe enough) would want to consider crutches just for the flexibility it gives them. Though I suppose it’s different for people who drive and therefore have more built-in flexibility.

    Re, the need to remind people that using augmented communication (or whatever) doesn’t mean that other skills (speaking, or whatever) will detoriate: absolutely agreed. Some parents prohibit deaf kids from learning to sign because of the same mistaken assumptions. And even some deaf people grow into adulthood refusing to learn sign, or at least refusing to use it for their own communication needs, for similar reasons: they think they’ll lose their speech and become “lazy”. But I sign (since age 3) and still speak and lipread well enough to use those in most one-on-one communication situations with most hearing people. So it makes perfect sense to ME that a hearing autistic person (or whoever) could continue to speak well part of the time even if they started to use augmented communication from time to time.

    There may actually BE cases where someone stops (or mostly stops) speaking when they start alternate communication approaches. But if so, I would take that as a sign that speaking was putting MUCH more of a strain on them than others may have realized. If speaking is not only POSSIBLE for them but ALSO moderately easy at least some of the time, then they wouldn’t feel nearly so much temptation to stop just because other options start to open up too.

    I generally find speaking easy enough that I don’t feel many temptations to stop (though I do drop it and pick up a pen instead in certain situations where I feel precision matters more, because I know my speech isn’t perfect). But it DOES take a constant, low-level effort of CONSCIOUS ATTENTION to how I move my jaw, my tongue, my lips etc, and constantly applying everything I learned in speech therapy from age 3 to age 18. And of course for many people it’s even more energy and effort. (Lipreading certainly takes more effort for me than speaking.) Why shouldn’t they stop if that energy could be better reserved for other things?

  49. With a mobility impairment — no one can just look at you and make an accurate assumption.

    And the most accurate assumption that can be made is that the likelihood of 2 given people with mobility impairments having identical weaknesses & strengths is extremely low, so assume that person X is NOT at all like your friend Y in what is easy and what is hard.

    Anything else will make the one assuming look extremely ignorant (maybe even willfully so) sooner or later.

  50. Pingback: Help from the world, revisited: the limits of technology « Hand to Mouth: Assistive Technology

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