Our Journey Thru Autism Website Publishes a Q&A with Me on my first book - A Is for Autism, F Is for Friend

[AisForAutism]

What was your inspiration behind A is for Autism, F is for Friend? 

I think it was more like "who" was my inspiration in that I really felt some sort of spiritual pull from many of my past students as inspiration behind writing this book. Most of my students with autism are diagnosed on the more "severe" side of the spectrum and are effectively non-verbal. Working one-on-one with them we developed ways to communicate with each other and I really felt that each one of them had a story to share, but no venue or way to share it. I do have a special relationship with one of my former students named Jon and I have dedicated this book to him. He really shared with me that if we take the time to get to know a person with autism on a personal level, that individual will open up to you in a unique and rewarding way.

What made you choose "rainbow" to describe the autistic spectrum? 

That came early on in the writing process and just blossomed from there. I was trying to translate the word "spectrum" into kid-friendly language. I thought back to my high school biology class and it made perfect sense to replace spectrum with "rainbow," but then symbolically, it went so much further representing a rainbow of friends. One of the sayings I love to inscribe on books that I sign is something I found on the internet that goes like this, "Friends are the pot of gold at the end of the rainbow. I hope you will join my rainbow of friends." Looking back in life, I remember some of the lovely rainbows I have seen in nature and each one creates a unique experience and memory which reminds me of how unique and memorable each child with autism is with whom I have come into contact throughout the years.

I love the "talk time" discussion points. Do you find that this helps to engage children? 

I really thought including the end of chapter "talk time" was vital to the main goal of the book which is teaching typical peers more about autism. I felt like Talk Time would help any reader, teacher, community leader, scout leader or whomever easily facilitate a discussion. I felt once the discussion springboarded from these questions, typical kids would see how much more similar they were to their peers with autism than different. I really wanted to bring autism out into the open and unveil the mystery behind all the behaviors and "oddities" that children might see on a playground or in the community. Once the information is shared, kids can be pretty smart and inventive on ways to better interact with their peers on the spectrum. One time I shared the book with a class of sixth graders and the discussion was so interactive that they didn't want me to leave after being there over 2 hours sharing information on autism. It was amazing - especially for sixth graders.

In your book, you discussed the 5 senses, entitled "Sensing the Differences" and did a fantastic job at using "kid speak". How would you explain the proprioceptive and vestibular senses in "kid speak"? 

I considered mentioning both in the book, but I thought it might be too much information and confuse the basic five. However, I have discussed these ideas with typical students when they mention or ask something related without necessarily using the terms. Honestly, I still haven't fully grasped these concepts as far as explaining them to others. For "vestibular", I explain it in terms of "knowing where your body is in relation to the earth." I usually give an example of when you just step off a dock onto a boat without holding on and you have to adjust where your body is in the boat to get the balance. I explain that it's almost like their physical body is in one place and that they actually feel like their body is in another place - not in sync. For kids with vestibular challenges, they might feel kind of "out of balance" like when you step onto that boat and for them to feel "in balance" they might spin, rock or flap to get the feeling of balance or calm. For "proprioceptive", I explain it to relating to "where a certain body part is and how it is moving." A child challenged in this area might seem to act clumsy or might play aggressively, because they have trouble fully controlling the actions of their body. An easy example I share is that I have a student who presses down so hard when he writes, he needs to sharpen his pencil every page. He is not able to control a regular tension on his pencil to use a pencil for an entire assignment. Another student likes to be squeezed between the floor and a beanbag chair, because that helps her feel the position of her body within herself and helps her relax.

A comprehensive read for kids, you discussed visual thinking, idioms and auditory processing. What was your most profound professional experiences relating to each of these topics? 

Since I began working with students with autism, visual thinking is constantly on my mind. I think now it is most profound when new staff come into our classroom. Until they see this visual thinking in action, I don't think they fully grasp its power. I see them asking a student over and over and over again the same thing. Then I walk over, draw a quick little cartoon of what they are asking, pair it with direct language and "walah" I get a positive response. I tell the new staff person that in reality, I didn't need to use any words, but we, as educators, NEED to pair the words with the picture to help make our words make sense. Generally speaking, my students want to succeed and like to please us, but if we don't provide the support they need, they might fail to succeed in certain areas.

Idioms are always interesting. My most recent one I experienced with a fifteen year old student occured while riding on the bus. He tends to have echolalia moments which get louder on the bus and I turned around and said, "Zip it, buddy." As I am sure you realize what's next, he zipped up his hoody jacket. So, then for a few weeks we practiced combining the words "zip it" with me physically modeling me zipping and then lightly squeezing my lips. For a few days, he closed his lips while zipping his jacket, but now when he hears someone say "zip it," he closes his mouth - at least for a few seconds.

Profound moments regarding auditory processing came both early on and most recently. Early on, one of the highlights of my career was being patient enough to wait while a student processed through whatever was going on in his mind to be able to verbally request, "I want swing please, Joanna." Waiting months to go from using picture cards, to combining words with picture, to having a student verbally request for me, personally, to help him swing was priceless. Then more recently, the memorable moment was helping a substitute teacher understand that repeating requests or questions does not help with delayed auditory processing. To show them to S-L-O-W-D-O-W-N and simply wait (perhaps through almost a minute of quiet) to actually watch a student process your request and then see his/her answer forming verbally to me is always amazing. The students really do teach the staff to just wait and listen and answers will come much of the time. Many times, if there is a new staff member in the class, they cannot understand this silence and they always chime in with the answer. When they see me look in their direction, they say, "Oh, you wanted the student to answer, sorry!"

You shared information on echolalia, stimming and the aversion to eye contact in such an easy to understand style. Why do you feel these were important components in your book?

 

I wrote this book mainly with the thoughts of being on the playground at a typical elementary school while working directly in a Special Day Class with students who have severe autism. One of our jobs was to help our students integrate with typical peers on the playground by playing handball, tetherball, climbing on the jungle gym or whatever. The problem was that my students often had very odd-looking behavior like hand-flapping or spinning around. While the explanation for this self-stimulatory (stimming) behavior was basically understandable, we as employees were not able to explain it to peers due to confidentiality rules for our students. That goes for the echolalia and aversion to eye contact. Once explained to peers, it makes sense and they can move on to help their peers have a little fun on the playground. However, what I call the confidentiality blockade made it so difficult to get past the easy explanation and get onto trying to play together. With this book, I could use a fictional character with autism, Chelsea, to explain everything from her perspective. To get her perspective, I used my own classroom experiences as well as books and articles written by people who have autism. I really felt covering these subjects was vital because these are some of the things that put a physical barricade between kids with autism and typical peers and with some pretty basic explanations, these barriers can be overcome.

Your book features an excellent resource section. Can you please tell us your absolute favorite website, book and video? 

Oh my goodness, I have a huge library of books that I have devoured in my quest to learn more about autism. It is so hard to select one. I do have to mention that those written by individuals on the spectrum such as Temple Grandin, Stephen Shore, Haley Moss and Zosia Zaks help us gain such insider perspective that they are priceless. One of my favorite books is called More Than Little Professors which is edited by Lisa Barrett Mann. This book contains over 200 pages of quotes, poems and illustrations offered by children with Asperger Syndrome. I just love seeing their perspective on so many different things. It really tickles me. As for video, I really loved the recent release by HBO about Temple Grandin. I think they did a fabulous job attempting to illustrate the mind of autism through Temple's life story. I had the pleasure of meeting Temple briefly and felt like they captured some of her essence. Although I am slightly biased, I highly recommend my publisher's website www.Asperger.net (Autism Asperger Publishing Co.), because I truly feel that they have a wealth of resources available for all ages and that they are truly motivated to continue to provide resources for a wide array of topics related to autism. Recently, they have especially addressed the teen years and adult transition which is dear to my heart.

How do you feel this book can best be utilized? 

As mentioned earlier, my target audience is sharing information about autism with typical peers in hopes of springboarding discussions which will sort of "demystify" autism to create a more welcoming community for kids on the spectrum. My website www.AisForAutism.net offers free printable activitiesthat go with the book as well as a video summary which is used often during autism awareness presentations for kids of all ages.

[saltycoqui]

Jun. 8, 2010 at 11:02 AM

Good for you!!!