Earlier this month, a teacher at a school in Florida contacted me about helping with a training session. The training will take place on May 5. She wanted to get an insider’s perspective about navigating the school environment as a person with autism, and she was hoping that I would put together a video about my childhood experiences in the school system.
Of course, I said yes. I had never put together a presentation like this one before, but it was a lot of fun to do, and I’m very happy with the result.
I’ve love to hear your comments. If you are a parent or a teacher, did you find the information helpful? And if you are autistic, how do you remember your own school experiences?
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For those with visual difficulties, and for others who prefer reading text, here is a transcript of the video, slightly edited to remove references to the photographs in it:
Autism in the Classroom: Personal Reflections
A Presentation by Rachel Cohen-Rottenberg
The Lewis School
Valparaiso, Florida
May 5, 2011
My name is Rachel Cohen-Rottenberg.
I’m a 52-year-old wife, mother, writer, and artist with Asperger’s Syndrome. I was diagnosed at 50. I’m married to a wonderful man named Bob, and I have a beautiful daughter named Ashlynne.
In order to give you some insight into what your autistic students might need in the classroom, I’d like to share my memories of my years in elementary school.
I was raised in Brookline, Massachusetts. I attended the Edith C. Baker School, a public elementary school, from the second grade through the eighth grade.
I had symptoms of autism, but no one picked up on them.
As a child, I was extremely sensitive to sensory stimuli, especially sound, and I felt the emotions of the people around me acutely.
Fascination and alarm: Those two words describe the nature of most of my responses to the physical and emotional world throughout my childhood.
I did not speak a word until I was 2 1/2, but I could read when I was three years old. I taught myself.
As a child, I had great difficulty making eye contact. Even now, when I look into a person’s eyes, I have such a profound experience of the person that I feel his or her soul coming directly at me. When I was a child, looking into the eyes of another person was an overwhelming experience.
My small, very conservative school gave me the structure to indulge my fascination with the world while protecting me from the kinds of experiences that inflamed my anxiety.
At school, we had many, many rules, and they governed nearly every aspect of the school day. We had rules for how to enter the cafeteria, with whom to sit, and at which table. We had rules for how to form a line and use the proper side of the stairway. We had rules for what constituted proper school attire.
The rules created a predictable, structured environment in which I could thrive.
My school environment was very spare and quiet. We did not have all the visual and auditory distractions of today’s world — no iPods, no computers, no cell phones. All of our learning was text-based. For me, it was the perfect environment.
My teachers demanded respect from all of us. And they did an excellent job of returning it. But they were not my friends. They were better than friends. They were allies. The vast majority were kind, patient, and supportive.
My teachers created an environment in which I developed faith in myself. I could never have achieved so much without this solid basis.
As you work with your students, please keep in mind that autism is not intrinsically a condition of deficit, but of overabundance — an overabundance of sensitivity to sensory and emotional phenomena.
I spend every day living with an experience laden with perception. I hear everything very clearly, with very little filtering. My eyes are constantly taking in the visual world, in every detail: color, texture, pattern, and motion.
The intensity and acuity of autistic perception causes many of the behaviors that can be so perplexing to non-autistic people. Stimming is a way to calm our nervous systems, and it serves to block an abundance of input by creating an abundance of output. Concentrating on visual or auditory patterns allows us to bring some measure of control to our perceptions of an overstimulating world.
Living with this level of intense perception is a great deal of work. Please know that your autistic students are working very hard, all the time, to filter and process sensory and emotional information.
It may not look as though they are working hard. Please look beyond what you see to what lies beneath the surface. When you do, you will go a long way toward helping your students succeed.
Thank you so much for taking the time to watch this presentation. Please feel free to contact me through my blog, Journeys with Autism (www.journeyswithautism.com),with any questions you might have.
© 2011 by Rachel Cohen-Rottenberg
Is there any way you could post the text inside the video somewhere? It would be easier to look back over it and reference it. Thanks.
Cloud, thanks so much for your request. I’ve updated the post with the text of the presentation. My apologies to those who use Screen Reader for not having made the post more accessible in its original version.
Having been in the ed business for 30 years on the high school level, I want to tell you, Rachel, that this is an excellent presentation for teachers and administrators. Teachers only know the autism which is represented on the extreme fringe of the spectrum…the student who is incapable of functioning in the classroom and should be removed to the “boiler room.” A presentation that the spectrum is wide and varied is very important to teachers and a realization that students with a higher functioning level of autism often go unnoticed in the mainstream. My only fear is that educators, regular education staff, will not have a clue when you reference sensory over load and “stimming” behaviors. I wish there would be an ability to present then in an a-v manner the experience of sensory overload…teachers are very concrete learners.
The only other idea would be to incorporate some very specific suggestions of how regular education staff could be an ally, a support and real helper in modifying the regular education curriculum to meet the needs of autistic students…especially in a world of things like MCAS and other idiotic forms of standardized tests upon which graduation hinges and labels of success are created.
An excellent presentation for staff and I hope it gets a much wider berth of viewers.
Hi Phil,
Thanks so much for your supportive comments. My presentation is part of a 45-minute teacher training training given by an educator who works with autistic kids, so I’m depending on her to provide some context. I will point out your comment to her, so that she can consider incorporating your suggestions into her training. Her colleagues will also have my email address, so they can follow up with any questions.
Rachel,
I love your video! I am so glad they asked you to do this. See I told you that you help so
many.
I was reading Phil’s response and thought I would share two video’s I found
when I was trying to help others understand the sensory overload that goes along with autism spectrum. The first one is a simulation of light sensitivity and the second is a simulation of
auditory overload. I know they are far from exact, but at least they give some idea of the differences. I too am glad you used the world overabundance.
http://www.youtube.com/watch?feature=player_detailpage&v=plPNhooUUuc
http://www.youtube.com/watch?feature=player_detailpage&v=BPDTEuotHe0
Excellent videos, Sue. Thanks for posting the links. The one about how it feels to walk down the street reflects my experience exactly. Wow.
I’ve been sitting here watching, and rewatching, and ran out of time! You have done an amazing job at describing your experience. If only they made schools like you went to…with the routine and order. I think that’s part of the reason my son gets so overlaoded–because of the lack of structure. You have pointed out clearly what affected you and the fact that even though it may not look like it, sometimes you’re hanging on by a thread. Thank you for that because I hear all the time, “But he looks fine…I don’t understand…”
PS–are you still in Brookline? My brother is there…please feel free to e-mail as I know we’re getting into private stuff–L
Hi Lizbeth,
So glad you like the video! It’s amazing to me that we autistic people get pegged with “poor Theory of Mind” and an “inability to empathize with what other people experience” when neurotypical people look at us every day and don’t have a clue as to what is going on inside us. All of us who “looked fine” are the kids who slipped through the cracks in my generation. I was very good at pretending I was fine when I was completely overwhelmed.
I’m no longer in Brookline; it’s been a long time since then. I’m now in Vermont, by way of California — kind of a circuitous route.
Well done, Rachel. And thank you for providing the transcript. You’ve just given me words to explain something I hadn’t even realized about myself. I totally prefer to read it. In fact, I was going to click away until I saw you’d provided the transcript. Oops..not about me, sorry…
Really great explanation of the experience. I love that you pointed out that it’s not about deficit, but overabundance. I think it’s especially difficult for people who process things in a conventional way, to see a child staring and rocking and understand that it’s because there is TOO MUCH going on, not the other way around.
Well done.
This is so interesting. You and Cloud prefer the transcript, and I can understand why: You’re not distracted by the music, and you have the ability to control the pace of the information. There’s a lot of information, sound, and movement to integrate simulataneously here, and I can understand why my fellow autists would prefer just one medium at a time. Of course, for myself, it’s not hard to watch the video, since I already know what it’s going to say.
I made the presentation with neurotypical people in mind (since they’re the target audience), and I put in the music because I figured that most people weren’t going to want to watch a silent movie. For myself, of course, a silent movie is always heaven.
Great job putting this together. Side note, in the picture that displays on video when it’s not playing, you look just like the girl who plays the daughter in the show called “The Middles” with Patricia Heaton.
Danielle, I just went and Googled a photo of The Middles, and I see what you mean about the resemblance!
Interesting to see your differing experiences and points of view. The rules and forceful nature of the school system is exactly what made the whole thing utterly unbearable to me. I cannot focus if I am being shunted between utterly unrelated subjects every hour or so. The work was always boring, ether because it was trivially easy, or due to lack of interest in the subject. And the biggest problem above all of those was my complete inability to write by hand.
I’m with you on preferring teachers over students, though for different reasons. I quickly learned that by befriending teachers I could learn more from them, and also gain other benefits, like freedom to use the science/technology labs over lunch.
A point of clarification: I don’t prefer teachers over students. Having been on both sides of that relationship, I can appreciate both perspectives. For the video, I concentrated on the teachers because they are the audience for this presentation.
I really like your presentation Rachel. The pictures of you at various ages really personalizes it, so the viewers will connect well.
And the music is great too. Very soothing.
(We used to call the first piece “The Magic Record” because it was the only thing that would get our firstborn to sleep in the evenings! She seemed to love that record and went on to a career in music.)
Thanks, Bruce. I put the photos in for the very reason you mention– to personalize the presentation. Since I won’t be standing in front of the teachers during the training, I wanted them to have some sense of who I am as a person. I always love seeing childhood photos of people; they give you such a clear sense of a person’s spirit.
Thank you for the transcription – the music on the video was kind of painful (not bad, just, you know).
I think you covered a lot of the basic points. Things I wish my teachers knew and cared about.
Thanks, Lisa. I was incredibly lucky in elementary school. High school, not so much. Things got quite a bit noisier and more chaotic. I still did well academically, but the sensory cost was very high, as were the ill effects on my self-image.
Thanks so much for sharing this. I’m the mother of a 3-year-old little boy who has autism. It’s so helpful to hear about school from your perspective. I too wish that we could find a preschool with more structure- the only options we have now are so loud and overwhelming for him. I especially liked what you said about thinking of it not as a defecit but overabundance. Thanks again.
Hi Christy,
Thanks for your kind words. I’m really happy that you found my blog and video. Keep coming back, and feel free to comment and ask any questions you’d like.
I was so hoping to hear your voice! Isn’t that funny? I do find the music soothing but I also preferred the transcript because the words are really important to me as a mother of an ASD child. These words can help me help my son and are like little nuggets of gold! My two favorite parts are the overabundance of sensitivity to sensory input and the structured environment. Those two facts are really important to a good learning experience. Thank you for sharing this Rachel! (Btw- hooray the book came today! Started reading already – when will I fit in all the reading? I’m so excited though!)
Hi Karen,
So glad you found the video helpful! The sensory/emotional overabundance is directed related, of course, to the need for structure. In many ways, structure in my life is like religious ritual — it provides a container for an experience that is very intense and multilayered, and that would otherwise be simply overwhelming. It would be difficult to live an experience like that without structure of some kind. If it’s not there in the environment, we’ll create it ourselves — through stimming, routine, our special interests, and the like.
I hope you enjoy the book! If you have a chance, please let me know your thoughts on it.
I’ve only come back (I’m thinking my other comment must’ve gone into the spam filter) to tell you that I adored your comment so much yesterday on my blog – that it inspired my post. I hope you are okay with it. I’ve linked back to you from my blog. <3
I’m totally okay with it! It’s a great post. I’m going to respond to it later, when I’ve had some time to mull it over. It gave me a lot to think about.
What a remarkable story and a beautiful presentation. I was curious to check out your blog
once Karen of Solodialogue mentioned it and I am grateful I stopped by. Your story and video have
opened my eyes to another side to the autism conversation. WoW!
Each day I visit Karen, I learn something new and today is on a new scale of learning. Kudos and thanks for sharing your journey and teaching the rest of us.
Eliz
Hi Elizabeth,
Thanks so much for your supportive words. I’m really glad you found my blog, and I hope it helps you as you find your way along the path. You’ll find some great people here.
Welcome!
Just found your blog.
of an autistic 23 mo boy. And since the diagnosis my life has turn to so many places to find, read, learn, understand him. What you write, helps me, a lot!.
I read the text, didn’t see the video ( will later ). What you write, what you express works so much for me, for my mind and understanding. I’m a proud mom
Thanks. Really. Thanks!.
Sabrina, so glad to help. Keep on being proud of your son! His pride in himself will be essential to his ability to navigate this world.
Rachel,
Your video was lovely and so informative! The idea that autism is a condition of abundance rather than deficit…wow…perfect and so clear. You know, it makes so much sense. When I think of those children who suffer from severe autism and have intellectual delay as a result…imagine…how can one “progress” intellectually or developmentally, if one’s brain is quite simply always fighting off the onslaught of stimulus from the world? It makes me think of severe epilepsy as well…every time a coherent thought comes up, it’s interrupted by an electrical storm in the brain. There can be no positive development…just coping all the time. Thanks for that video, anyways.
Claire
You make an excellent point, Claire. I’d never thought of the connection between extreme sensory/emotional sensitivity and intellectual disability. It makes sense, although I’m not sure how it applies to people with severe autism who were thought to be intellectually disabled, and then turned out to be of average or above-average intelligence (Carly Fleischmann and Jeremy Sicile-Kira, among others). Of course, the severe end has its own spectrum, so that may account for the differences; past a certain point, it may be impossible to develop intellectually while being bombarded by the outside world.
I’m also not entirely certain that all the kids diagnosed as ID actually are; it may be that their intelligence cannot be expressed in any kind of standard way.
There’s so much that we don’t know.
I went to school years before I was diagnosed. Thanks to my mom and understanding teachers I was not relegated to (then primitive) special ed classes. It was hard, but eventually I learned how to function in the neurotypical world. Too bad there was no specialized program for Aspies like there is now.
Today I am standing in front of the classroom as a teacher. The socio-political aspects of teaching are very daunting to me, and often discouraging. But I know my stuff and the kids like me. Despite the fact that I am now able to “pass” as neurotypical, I am still a stranger in an alien world.
I would have loved some sort of specialized, sensory-sensitive program in high school. But somehow, we made it through, didn’t we?
Yep.
I’m finally catching up on some of my favorite blogs. This is a wonderful presentation. I take it in better with the transcript, though, because I have this thing about controlling my reading speed and having trouble listening and reading at the same time. I think for a lot of people the music and pacing would be very comfortable and soothing, though. From my perspective, I’ve thought for a long time that my own ASD son would have faired much better in the more structured-type school environment you described and that reminds me of some of what I had growing up than what he’s expected to deal with now.
Thanks for the kudos, Diane, and good to see you back.
I’ve been thinking for awhile that the rise in ASD diagnoses has more to do with the way the culture has changed, rather than the usual things people talk about (vaccines, pesticides, etc.). It’s a much louder, busier, chaotic world than when we were kids. With the chaos that was going on in my house, if I hadn’t had school as a structured, safe resting place, I might have acted out quite a bit, and the signs of autism would have been more obvious. It just shows how little people really understand of autism that they haven’t figured out that it’s the charged-up sensory environment that very likely makes autism so visible in kids these days.
I really enjoyed your video. When I was young I longed to go to a structured school with rules and uniforms and intellect respected over physical prowess and looks. Sadly that was not to be. All of my school life I felt abandoned and bewildered, propelled through each torturous day by sheer fear. I studied the “customs” of those around me like an anthropologist trying to see how they related and how I could too. I learned that I could not do it and my self esteem still bears those scars. In grade 7 I discovered alcohol and smoking, which I still use as crutches to this day (I am 42).
I am still trying to navigate this alien planet and I truly hope that one day I will be able to relax. My school career was a nightmare from which I am only now beginning to waken. I wish somebody had known what I was going through. Keep doing what you do and spreading the word so that us aliens can feel safe.
Hi Penny,
Relaxing is the hardest thing for me, too. I think it’s true for a lot of us. We work so hard to navigate the sensory world and all of the anxiety that comes with being different. I’m starting to actively use a lot more relaxation methods than I have in the past, mainly meditation and stretching. Walking also helps to calm me, especially when I bring my camera along. I go out walking every day.
I’m so glad you found my blog!