A few days ago someone asked Emma, “How did you learn to read and spell?” Last night, in response to this question Emma wrote, “I learned by watching the words my mom read to me.” She went on to write, “I was able to read many years ago and could write, but didn’t have any way to show it.”
I asked, “Were you able to read as a very little girl?”
Emma wrote, “Yes.”
“As a toddler?”
“Yes,” Emma wrote again.
What is interesting about this is that for years, when Emma was very young, I assumed she didn’t like being read to because when I tried she would grab the book, insist on flipping the pages faster than I could read them, and generally seemed (to me) uninterested. But from what she wrote last night, it suggests I was incorrect about these early assumptions or at least was partly incorrect. I am no longer shocked by all that I didn’t understand. It no longer surprises me to find out, even now, how wrong I was and continue to be about so much when it comes to my daughter.
Because Emma did not sit quietly while I read to her, I thought she didn’t like being read to. Because Emma preferred holding the book and would turn the page before I had time to finish reading the words I assumed she wasn’t interested in the story. Because Emma protested if I tried to take the book from her to continue reading, I assumed she wanted to be left alone. Because Emma seemed distracted while I read, I believed she didn’t like the story, didn’t care for the book, didn’t like books in general.
How would I have viewed her various therapies, preschool, and later grade school, had we understood that she already knew how to read at such a young age? Our decisions on how to proceed, our opinions regarding what others told us, so matter-of-fact, so sure of themselves… who knew how wrong they all were? How wrong we were?
People say things like – parents know their child better than anyone. In our case no one knew our child better than anyone. We didn’t. All those therapists who worked with Emma didn’t. All her teachers, everyone who came in contact with her, not a single person during those early years ever said, “I’m guessing she already knows how to read” or “maybe she already knows, but we haven’t found a way to help her show us all she knows.” Emma’s need to move, her inability to consistently say out loud what she intends, her deep need for sensory input, her attempts to regulate herself, none of that was understood by anyone, including us.
Had we not begun to find ways for Emma to communicate through the written word, had we insisted on her “speaking,” we would continue to be in the dark. All the things emphasized in school for a child like Emma who is physically capable of articulating words made us believe spoken language was what we needed to concentrate on. What we are seeing is that the less we focus on her speaking and the more we focus on her writing, the more she is speaking.
“Hey Em, do you want to put the smaller string in your backpack, just so you have it?” I asked as we headed down to meet her school bus this morning.
“N” “O” Emma said, as she bounded toward the elevator.
A self portrait in the making
Emma's Hope Book 
This is like a mirror to our experience.
I feel there is an autistic-specific way of experiencing and learning and developing. The autistically configured and developing person is radically self-referring, radically reliant on their own sensing and cognition, so a distinct way of being a whole person. Environment then impresses itself on the holistic sensing and thinking/feeling autistically-orientated person; like the classical key pressed into the bar of soap. That impression is then decoded across and by the radically self-referring person: almost in the way that fingers might brush musical strings, or wind might move musical chimes; where resultant music stands for the experiencing had and the learning done. Experiencing is had, learning is done, developing occurs: all within and across the intra-universe of autistic wholeness. Output across the autistic-social membrane is a different moment; and mutual calibration can be challenging.
Yes, exactly. For us, too. All of it!
We think he can read, know he can spell some, but still clueless about what to do with books…you could have been describing him w your words. What was she/is he doing flipping through the pages so fast…can they read that fast? Or mesmerized by the pictures and catching some of the words? Or listening to some then just getting impatient? That is the part that still eludes me and confuses me as to reading to E. We got matched up with a runner in the Irun4 program yesterday so I’m going to try to use that to have some short lessons with him…reading him the post to him, talking about where she lives (we got a runner all the way in Spain) etc…it may be 10 yrs before I know if he had any interest at all…but its worth a shot 😉
Yep, this pretty much sums up our parenting experience with Miss Emma: Idiots in the dark, trying to do the best we could for her (but not having a clue)–and constantly pushed in the wrong (and exact opposite) direction by self-proclaimed, non-autistic “experts.” Sad, but very, very true. Hopefully, this message and others like it on this blog will spare other autistic children and their parents years of years of suffering, frustration and hopelessness.
Wow. That sounds exactly like Olivia. She tries to flip the pages too. I have been wondering if she already knows how to read. I am definitely going to start reading to her much more often!!
Yes. That’s all I’ve got left as I read these day after day, nodding my head so hard it threatens to come flying off my shoulders – just a resounding, emphatic, YES!
Depending on what sort of reading I’m doing, or how tired or distracted or excited or mesmerized I am, or what else is or isn’t going on: I either read with a speed that seems to astonish people because it is so fast, or with a speed that seems to astonish people because it is so slow. The differences are not under my control.
True story – Ib and I were chatting online together and I mentioned an article I’d just read and wanted Ib’s opinion on it. Ib asks for the link, I sent it to her and as I’m writing to her about something else, she writes her opinion about the piece I’d just sent, seconds before.
I have seen Emma flip through the pages of a book so quickly I was sure there was no way she could have read the text. Then asked her a question about the story and she wrote a perfectly accurate assessment of it, proving that she had read it. I do not doubt her ability to read very quickly. I also do not assume she will read that quickly all the time.
I have to fight my tendency to want whatever discovery I’ve made, to be a constant and then surprised when it isn’t. I do not have consistent ability to do all things I attempt, I’m not sure why I have a difficult time understanding the same is true for my daughter… Perhaps it is that the differences seem so extreme to me? I don’t know. Will think more about this…
My girl did the same exact thing, I also assumed the same thing, disinterest. Thanks to facilitated writing and such we now know we were wrong, but delighted to find this out ;).
It is nice to read about other families going through the same thing we are going through with our son who we also just learned he has been reading as a toddler since he started doing assisted typing 3 years ago. Not only that but giving us feedback on all the therapies we tried since he was a toddler- the good and the bad!
Like Emma, I was able to read long, long before I was able to read aloud or show others how well I could read at all. I remember in school, my third grade teacher wanted me sent for extra help in reading because I couldn’t read aloud well and would instead read silently. Because I loved reading and would happy-flap when I read, and because I would put my face right next to the page, nose touching the paper so I could be closer to the marvelous words, she saw a kid who was fidgeting, not paying attention, and trying to hide it in a very clumsy manner by hiding her face behind her book. The reality couldn’t have been farther from what she thought: The times when I was allowed to read in her class were the only times I actually enjoyed.
Fortunately, I’d been diagnosed with a speech impediment, so my parents figured out why I hated reading aloud pretty easily: Of course I couldn’t read aloud well, my parents said to her, I had a speech impediment and so had a hard time saying things. Multitasking reading and speaking must make the speaking part harder – sometimes so hard I couldn’t do both at the same time. Add in that I could read much much faster than I could speak (and still can), and it was kind of a recipe for poor evaluations. I was a fish, and they were grading me on my ability to fly.
Once the teacher accepted that I could read as fast as I was, I often got in trouble for reading ahead – the teacher thought I should re-read and re-read the same passage “for comprehension” even though I didn’t need to and it was boring to read the same thing over and over when I already understood it.
Funny thing is that printed word has always felt like a more natural and comfortable means of receiving information to me, and for giving information since I learned to type. But, to hear my third grade teacher, I didn’t have any affinity or talent for reading, even though I was reading at a high school level! And when she learned that I did have talent for reading, it became that I didn’t have interest in it because I didn’t want to do the same task over and over and over again pointlessly. Which is foolish: I like reading, but I don’t see the point in re-reading something I’ve already read and understood.
Oh, and at 25, I still can’t read aloud very well. Multitasking while speaking is not something I can do well. I have a 5-year-old relative who can read aloud better than I can, and she’s pretty average for her age in reading aloud ability.
Hmm so though I cant know for sure right now, just like i cant be sure he is reading, it is a real possibility he can read that fast. Ummm wow…I am an extremely fast reader, but IF that is the case he makes me look like im sounding out phonics. Yet another stretching of the mind. I never considered a 3yo could read, despite situations that were too improbable to be coincidence, until I read Ido in Autismland…now my mind is being blown again.
Ariane and Richard, i think part of our underestimations come from the incoprehensibility of it. Being (i would assume from word choices and manner of speaking etc…My mind scatters when i write so it doesn’t show so much) considered highly intelligent ourselves…our minds somehow place the ceiling of what our children can do at the level of what we, as adults, can. The thought never occurs they could be past us…because they’re just children.
“Hmm so though I cant know for sure right now, just like i cant be sure he is reading, it is a real possibility he can read that fast.”
Camelynelayne, what constitutes reading for a developing person is likely to be always changing across development stages.
What we outsiders-looking-in do as reading for ourselves, is necessarily a template for what reading is for a child at a particular developmental stage. What reading does for that child may be very different from what reading does for us who are looking in.
Meaning and understanding and function across reading are not monolithic.
Fast reading is likely to constitute function-completed for the person at that stage. A child’s fast reading may not correlate at all with what fast reading is to us looking in.
A child is reading if written words are functioning meaningfully for that child. What the detail of that meaningful function is will then remain something to be empirically discovered.
When Emma correctly says that she was able to read as a younger child and as a toddler, she is not likely to be claiming that the reading she did as a toddler and a younger-child and now, were and are equivalent. The functioning of reading across the whole of what she was and is as a person at each stage, differing.
The crucial point might be that at each and every stage an intelligent and integrated Emma was making meaningful use of written and spoken language. Even when choosing to herself remain silent.
As is likely to be the case with your own son E.
Please forgive the wooden way I put things. I find what Emma and Ariane and Richard and those around them have to say, drives my imagination; and now and again I just want to express what your joint-speaking makes me imagine.
“What we outsiders-looking-in do as reading for ourselves, is necessarily a template for what reading is for a child at a particular developmental stage.”
The first is should be isn’t.
Fascinating! You’re right she is speaking just in a different way.
“Part of our underestimations come from the incomprehensibility of it.”
This is exactly true for me Camelynelayne. Watching Emma write her profoundly brilliant thoughts while she is stimming, blurting out seemingly unrelated thoughts (but are they?) and looking around distractedly, makes no “logical sense” to me. I have been trained from birth to interpret the world around me and the people I encounter and the things they say and do according to a 1+2=3 logic. Now that same logic has become non-sensical to me in the face of what we are witnessing daily. When I describe my reaction as “mind-blowing,” that is true and accurate, but I think your phase is more apt: “the incomprehensibility of it.”
This is a truly an extra-sensory-perception of everything I have always known and believed about the mind and communication and consciousness and this crazy little thing we all “reality.”
I am loving every minute of the journey!
All of these voices and experiences and brain stretches are presenting their own problem to me though as we inch toward school. My State has fairly lax homeschool laws so i am forever contemplating what would be more/less beneficial to him. Do i send him to a school where he will be subject to bullying, underestimated, not understood, and taught in a way that maybe he cannot learn…or do i keep him home and pursue hack schooling/unschooling whatever you wish to call it, knowing that currently home is the place where he is allowed to just be as he is after a long day therefore transitioning to learning and working would be difficult, and knowing my own complete lack of organizational skills and difficulty focusing?
Yes…it’s me again…i left my above commenting to go get another cup of coffee with my mind still reeling…mom has a video on and i catch a few words…just happened to be Jacob Barnett’s TedxTeen and the moment he mentions he was around preschool age and was dx autistic and was not supposed to be able to ever learn or talk but had gotten a textbook and learned a complicated theory at that age.
Odd coincidence, and more mind reeling. I’m not suggesting every autistic child has these abilities, or is a genius, but the pure vastness of the possibilities is mind boggling
Linda, my daughter, who is not autistic, but is non-verbal from Joubert Syndrome Type 2 has been reading since the age of 3 or 4. She learned how by following the CNN ticker. She began typing to communicate at the age of 10, never having to learn vocabulary or how to spell!
In trying to understand our children, we can’t help but start with our own perceptions, which took a lifetime to develop. Sometimes I feel amazed at how far we have come in trying to comprehending our children’s perceptions in a fraction of the time it took to understand our own.
Hi,
I just wanted to say that Emma is amazing and Ariane you are a saint for consistently helping Emma find her voice by writing. I have not posted here in a while but I read your post daily. I knew when Brooke was 8 now 20 that she could read and type on a letter board with support, but it was so difficult for her and no one at school believed it. She still is progressing and doing well but she will mostly only talk to her older sister using the letter board and of course the school doesn’t use it. They say she doesn’t even know basic addition and subtraction and she was answering multiplication for family many years ago. I am thankful now that I didn’t go broke pursing ABA. We did pursue the letter board and academics with the school but after 12 years of fighting we haven’t made the progress that you and Emma make in a day. The good news is that Brooke’s family does know how smart and capable she is but with us trying to pursue the school we were actually setting her up for failure which I feel is why she doesn’t really want to use the letter board with anyone but her sister. I needed your blog all those years ago to put a bigger fire in me because it is unbelievable to experience your child’s thoughts when you were basically told they didn’t have any. One of the main reasons I chose to post today because as a former educator I just wanted to say with my early childhood training and 20 years of teaching kindergarten where developmental skills of even NT kids was all over the place so I was very interested in individual learning styles. This carried over when I taught middle school special ed. Also. I just wanted to add that I think running videos with the caption when Brooke was little helped her learn to read. I read a comment below and the lady said her child learned how to read from the CNN ticker. Also reading to any child is very important. Brooke even at 20 loves the human voice so I still read to her daily, but she flips the pages too like some of the others posted. I have concluded that Brooke loves the rhythm and rhyme of the stories, she loves to flick the pages and make noise and sometimes she will fixate on the same page over and over. One other thing she sordid when I get close to the end she will start turning the pages backwards and I assumed it wad because she didn’t want the book to end and me to stop reading. She loves to sit on me and have me read directly in her ear. This drives her dad crazy but I think it helped her trying to talk and with repeating phrases. Maybe Emma or some of your friends on the spectrum could comment on putting text on videos at a young age was or would be helpful. Thank you and Emma for sharing and sparking imaginations as some of the other commenters stated.
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One of the most significant moments of my life was when I figured out my severely autistic child could read, and at three! So happy for Emma that the increased writing is leading to more speaking as well. Thanks to both of you for sharing this!
Thank you for writing this. I just know my 6 year old son can read although no one except my husband agrees. I ordered Soma’s book, dvd and have been pouring over them and the info online. I am both excited and scared to learn his opinions on what we have tried to do to “help” him.
My boy flips through the pages too. He loves books and always flipsthrough the pages of a new book from the beginning to the end first thing. If a teacher reads a story to a group of kids, he asks to have the book and look at it himself afterwards. I always thought it was because he wanted to see what was going to happen next by looking at the pictures, but then I always thought how amazingly he understands context by just looking at pictures, so yes, definitely worth looking into.
I don’t remember when I couldn’t read. Arguments about if I could or not were frequent as I seemed to be doing a bit too convincing imitation of the art of it for a non-reader. I am the youngest by far in our family so there were not even that many kid friendly things to read around.
I have never met a kid who doesn’t know more than people think even when they have few ways of showing it. It’s odd how just the notion a kid is disabled makes some people think they can’t know things that the normal person views as hard. First special needs kid I ever worked with could easily recognize the first initial of every member of the household (which as I thought those would be most interesting we started with) but it took longer for me to convince people this was not some trick I was pulling than it took for her to develop speech so she could just say their names.
In a perfect universe any time a kid got any diagnosis it would be followed by and please don’t listen to anything said about it but use your own eyes and ears when making conclusions like you would for any other kid.
I would love to share “How Did You Learn to Read?” with people tomorrow during my webinar for The Developmental Disabilities Institute at Wayne State University. It would also be fantastic to share in my upcoming speaking engagements.
I am the author of Opening Doors, Opening Lives: Creating awareness of advocacy, inclusion, and education for our children with special needs. I speak about the importance of including all children in school and presuming competence. My daughter is in the 10th grade and cannot (yet!) communicate. She has the label if autism and significant disabilities. But if she could tell me…I am confident she agrees with Emma!
I would love to share this and of course give Emma full credit!! It is a powerful message to the parents, social workers, and teachers I am training. I share our story–but I would be honored to be able to share the opinion of a child. My daughter can’t share her opinions yet–so it would be nice for her to have a voice in my presentation through Emma. My book and presentation are written to share our story and help people understand that all children should be valued and included in school. My book received positive reviews from the Autism Society of Michigan and has several endorsements.
It sounds wonderful. Please share. I’ve spoken to Emma and she has agreed. Wishing you good luck with your presentation.