I often think about that first time I saw someone who was unable to express themselves through spoken language, but who spoke through writing. There is nothing quite like seeing to believe or at least to begin to believe what many of us have been told is impossible. So I’ve compiled a few Youtube videos of different people who communicate the way Emma does. A couple of them show people who have graduated from the laminated letter board and now type independently on a stationary keyboard. This is our goal and what Emma is working toward. For those who may feel someone holding a laminated letter board is cumbersome and suspect, please keep in mind the letter board is a stepping stone, which all hope will eventually lead to full independence.
The first video is of Ido who now types independently on a keyboard. Ido’s blog is Ido in Autismland where, in a recent post, A Challenge to Autism Professionals, he wrote:
“The theories regarding autism have been based on observation of our odd behaviors. Lists of these behaviors make a diagnosis. I have limited independence in selfcare. I have limited eye contact. I have flat affect often. I can’t express my ideas verbally. I have poor fine motor control. I have impaired initiation. I have impaired gross motor control. I have difficulty controlling intense emotions. I have impulse control challenges and self stimulatory behavior.”
At the end of this terrific post he writes:
“Thousands of autistic people like me live life in isolation and loneliness, denied education, condemned to baby talk and high fives, and never able to express a thought. The price of assuming that nonverbal people with autism have impaired thinking is a high one to families and to people who live in solitary confinement within their own bodies. It is high time professionals rethought their theories.”
Ido wrote a book with the same title as his blog – Ido in Autismland. I cannot recommend this book enough and have written about it before ‘here‘ and ‘here.’ It should be required reading for all parents with an Autistic child as well as anyone who is considering entering or is already in the field of special education and/or autism.
This second Youtube video is of a boy who writes a letter to his church.
Jackie Dorhurst is a speech/language pathologist shown here working with Gavin. Jackie has an organization called RPM+ located in Wisconsin.
This next video is of my friend Sue Finnes’s son Chris. Sue has a wealth of videos that she’s posted on Youtube over the years of Chris working with a number of people whom she’s trained to work with him.
And finally this video is of another independent typer, Mitch Helt who writes a letter to his aide.
This post was inspired by a comment from Ari, who has a wonderful blog, Pixie Perceptions. You are not alone Ari. Doing all I can to make sure others realize this…
I want to thank you and Em for all that you are sharing and they way you are educating me and others. I am so endlessly grateful ❀
My son, H, has language which is generally reliable, though not always – and so I want to express that I have certainly had the opportunity to build some very useful understandings of what might be going on for H – through reading about your journey with supporting Emma. H does have challenges with language retrieval which can fluctuate in intensity – depending on context, sensory issues, or other environmental variables and other factors. I feel I am better able to understand and to explain to others what might be going on for him (a direct result of the privilege of observing the emergence and progression of Em’s expression and insights) and I am also working to support him in understanding this for himself so that he will be able to advocate as well.
I also have a question… I am wondering if you might have some suggestions about how one might work to support a person like H, who is sometimes referred to as a ‘reluctant writer’. He brings a lot of emotional stuff to the table (or the keyboard) when he is writing – and I am wondering if you have any ideas about how to help him feel more confident in this domain. I am also wondering if the tendency to have a kid who struggles with writing (but has generally articulate speech) verbalize prior to writing as a strategy, might actually interfere with some aspects of the process for him. I am connecting this because of the way (and I paraphrase) that Em describes that her mouth is telling a different story than her mind. I am wondering if you might have some thoughts/reflections about this and perhaps some insights or suggestions??
Much love and appreciation ♥
My son struggled with writing, and even more with reading, because there was so much of an emotional burden attached. He was so sure he wouldn’t be able to do it well – he had been told by so many people that he couldn’t read or was not a “good reader”, and was so afraid of falling, of “feeling stupid” – and of course already felt like he was failing, already felt like he was “stupid”.
All I could do for him was totally deescalate the importance of reading and writing. We took it in tiny bites, trying to stop before he got triggered, loading on the praise and the reassurance. I pointed out that he was already doing it, that what he was doing WAS reading and writing, even if he wasn’t totally done learning all of it yet.
He had just suffered so much from other family members labeling him as damaged in some way, unintentionally taking out their frustrations on him and treating him as “less than”. He had experienced a lot of different kinds of abuse and his self-worth had suffered most of all as a result, and it showed up the most in reading and writing. But as a teen, he’s a tremendous reader.
Also, there’s a typo at the beginning of this post – “unable to express themselves through language” ought to be “through spoken language,” because they are expressing themselves through language when they write!
Ack! Thank you, I’ve just amended!! Also thanks so much for this comment.
My first response was – oh my goodness!! I have no idea! – and a feeling of panic because, wow all of our kids are so different with very different issues, (as I know you already know) just like non autistic kids, and I’m still trying to figure out how to best help Em.
But my second response was – okay, let me think about this some more… So here are some of my totally random thoughts about all of this, take what you might find helpful and trash the rest…
I’m thinking I will have to ask Emma if she would call herself a “reluctant writer” too, probably not the word she’d choose, though again, I won’t speak for her and will ask. I’m guessing though that she might say she finds writing tedious. Talking, as she has described it, is easy, but saying what she means is hard, so there’s that too, which is part of the mix. Also Emma speaks about completely unrelated things as she writes, hence her fabulous multi-tasking comment! But here’s the thing, given the choice, Em would prefer not to write. It’s really, really hard for her. (Forgive me for not giving you direct advice about H. the best I can do here is talk about what I’m doing and what seems to help Em.) Oh and also, feelings are really really hard to write about for most of us. The bigger the feelings the less words tend to serve us…
So a couple strategies that seem to help are:
The Timer – this has been essential. At the beginning of any session we put on the timer. One 45 minute session and maybe one 25 or even 30 minute session and that’s it on any given day. These times get adjusted down (never up) if there are other things getting in the way, such as, she’s exhausted, doesn’t feel well, had a tough day, etc. Also if she’s hungry needs to just do nothing for awhile, all of these things take precedence over writing. I do have her write a sentence here or there throughout the day for clarification purposes, but this is different from our “study sessions”.
Stims – Em has a bunch, but the two big ones are her string and verbal stims. I actually see these as part of the writing process and not separate from.
Modulating voice and tone. – If she’s hyper and making lots of loud utterances, I lower my voice or make it more sing songy. Also playful is important.
Fun – Our sessions need to be fun, so if I’m fretting over something, preoccupied or just generally out of sorts, I try to remember NOT to attempt a session, because she’s really sensitive to my emotional state and if I’m not in a good place, it’s really overloading for her. So I have to take care of myself before I can expect to have her write without being really anxious and stressed (neither of which are conducive to creative output).
Choices – giving choices regarding subject matter is key. Lately Emma has not wanted to write any more “folk tales” but instead has wanted to talk about things she is curious about, so we’ve done that. But it’s different, I think, than what you’re talking about, because these are the kinds of things one would usually “talk” about through spoken language, but because Em can’t do that she writes these questions and thoughts and lately that has been the types of things she wants to spend doing during our sessions together.
Encouragement – this is critical. While she’s writing I say things like, “keep going” “you’re doing great” when it seems appropriate but not so that it’s a distraction.
Lots of exposure to literature – Richard and I continue to read to Em every night and often after school, particularly if there’s something going on in the news. We also use Brain Pop where she can watch videos and listen to all kinds of lessons read.
I don’t know that any of this is remotely helpful as it seems to me the issues H. is dealing with may be quite different, particularly as so much of what Emma is having to write are things H. has no trouble saying, so for Emma so much of the time she is writing things that H. would simply say, therefore the reasons for writing are somewhat different (i.e. communicating needs, opinion, questions, etc.) Anyway, hope this helps and let me know what you think.
Thank you, Ariane, for taking the time to respond to my queries. I know that we have discussed how different our children are – but what I am really able to access through your posts is an insight into some ways they may actually be alike in their processing, so I appreciate being able to ask you.
I also wanted you to know that what you and Em are sharing has an impact for many people – for many reasons. You have me thinking and looking in a different way – both as a parent responding to and supporting my Autistic teen-age son – and as a special education teacher supporting students from K-12 – and as someone who works building understanding in educators. So this is huge.
I am able to take what I learn from you (and others) – and from considering what I learn supporting H – and that helps me to work with educators and parents in building their capacity to support the students with whom they work (some of whom seem similar to Em).
I think you are right about the difference in the reasons for writing – between H and Em – and that H can just (usually) use speech to say what he means. I am in no way trying to say that it is the same – but you had me thinking that there may be a disconnect between what he is able to verbalize and what he might be able to write if we were to differentiate or delineate the two – and perhaps explore the strategy of not having him speak his ideas first.
I am curious if there might be a more authentic and holistic way to approach this and that pulling out the thread of speech as a reliable starting place for pre-writing – could be sidetracking things.
I especially appreciate your insights about accepting the stim as a part of the process and also the importance being aware of being in a good place to be responsive and encouraging and calm and make it fun. All of those are really, REALLY good reminders…
Leah, I appreciate your posting about your son. My grown daughter is also verbal, but because of expressive issues has difficulty getting others to understand her needs. She too is very reluctant to use a keyboard. She recently acquired a tablet, but the very act of typing seems to be overwhelming to her. I look forward to Ariane’s comments/suggestions to your request.
Stephanie – see my reply to Leah’s question… It’s probably not very helpful, but curious if either of you think there’s overlap.
Yes, Ido’s books should be required reading for all professionals in the field of education. And thumbs up to the Jackie Dorshorst video clip….that is who Nathan works with.
LOVE THIS!!! Awareness is HERE! Thank you Ariane!
Ariane, Your response to Leah was excellent and a lot of what I have done with my daughter over the years. I think my daughter’s frustration with not being able to express her needs to others is compounded by sensory issues around hearing and touch that make a computer so difficult for her to access and utilize. The drone the computer makes and the sensitivity with not wanting anything tight fitting on her ears to mask the noise (such as ear phones or ear buds) prevent her from writing. We will continue to introduce different mediums to her as they hopefully becomes available, and maybe over time she will find something that is conducive to sharing what I can only imagine she wants to do so desperately. Your postings provide so much insight and I am so grateful to you and Emma!
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Upon reading Ido’s comment, one wonders: is it truly the autists who have impaired communication – or is it those who see themselves as ‘superior beings’?
The autist is expected to read his/her (self-styled) master’s mind to a perfection, in real time, and with perfect accuracy. This is seldom achievable by those with *perfect* “mind-reading” . (Note: most of this capacity of the majority is closer to instinct – it is not conventionally learned, nor is it (as a rule) consciously performed)
Hence, in all circumstances, the ‘master’ benefits: when the autist succeeds, the master feels as if he/she has a perfect bodily extension; when the usual happens, and the autist fails, the master has an outlet for his or her sadism. In both circumstances, there is social profit for the adept master – and that is the driving force behind the abuse and ‘enslavement’ of autists.