Autism

Behavior = Communication (It Just Makes Sense)

Published July 11, 2009 @ 06:04AM PT

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Sensory overload and difficulties with communication: These are the two main sources of major anxiety in individuals on the spectrum that I've heard mention of again and again from many people I've been in touch with. And they are the two things that Jim and I keep returning to when Charlie's gotten upset.

It's only been in the past year plus that we've really noted Charlie's extreme sound sensitivity. It's not only loud sounds that bother him, but high-pitched ones, no matter how soft. (He even puts his hands over his ears when he's sleeping if there's a noise.) When he was younger, there was a time when he'd sniff his food before eating it, and when he licked the salt of the potato chips before eating them. (I only figured out what he was doing with the latter because one of his ABA therapists said she used to do the same thing.) He definitely is alert to textures and likes his clothes to be light and loose and soft and not too bulky. (Wool sweaters? fuhgeddaboudit)

I have to shake my head when I find myself making a big deal about Charlie's sensory sensitivities as unusual responses to sensory stimuli were the one thing that Jim and I were quite sure that Charlie, when newly diagnosed, did not have. In those days, as now, Charlie's communication disability was a major concern; Charlie's initial diagnosis from the St Paul Public School District was, indeed, that he had a "communication disability" (I think they gave him that in part because I was so distressed about the whole situation; as you can see, things have been changed quite a bit).

I've been reading (thanks very much to Bonnie) a book called Autism Life Skills: From Communication to Safety to Self-Esteem and More---10 Essential Abilities Every Child Needs and Deserves to Learn by parent and professional Chantal Sicile-Kira. It's sensory processing, communication, and safety that Sicile-Kira notes are "the top three areas people [on the autism spectrum who are now adults] wished they'd received help with as children" in the book's introduction (p. xxii). The first chapter, "Sensory Processing: Making Sense of the World," encourages parents to keep their child's sensory issues in mind when addressing behavior problems and even when undertaking a Functional Behavior Analysis (p. 12). And Sicile-Kira also notes:

...behavior is communication, but we [non-autistic individuals] are not always so good on picking up what the message is. (p. 5)

Yet more reasons why life with Charlie means thinking differently, and taking things at a different, often slower pace and learning to pull carefully rather than push. As I've noted, Jim and I are quite the big talkers and a lot of being Charlie's parents and advocates has meant learning that what he does---his behavior---can tell us quite a bit about what he's thinking and trying to communicate to us. It also suggests why words aren't all they're cracked up to be, and why we've learned to use our other senses, in the hope of making better sense of things for Charlie.

Lavender image from Spicelines.

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Comments (5)

  1. Dora Raymaker

    You wrote "It's sensory processing, communication, and safety that Sicile-Kira notes are "the top three areas people [on the autism spectrum who are now adults] wished they'd received help with as children" in the book's introduction"

    Did Sicile-Kira include citations?  Like, information on how she knows those are "the top three areas?"  If so, could you let me know where she got her information; I am interested.

    Posted by Dora Raymaker on 07/11/2009 @ 10:49AM PT

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  3. Fw2 farmwifetwo

    "Did Sicile-Kira include citations?  Like, information on how she knows those are "the top three areas?"  If so, could you let me know where she got her information; I am interested"

    Had to snicker, when autistics (ND Autistics since those that are not ND friendly are shunned in Hub-land) have an opinion it's "gold standard" when a non-autistic has an opinion, something they've seen with their own children or the children/adults they may have worked with it has to be "official proven results". Michelle Dawson slapped me back for that as well.

    Talk about double standards.

    As a PARENT of TWO (2) children with autism one with NLD and one with Severe, non-verbal PDD I suspect her findings are true b/c they are the very things I have found have increased my children's learning when addressed.

    If you can help cope with the sensory/anxiety issues, bring these "flight or fight or pain causing" issues under conscious control, communication seems to become easier. It's hard to think and be part of the world when the world is too big, too painful to cope with. It's very noticable when my little one becomes ill, communication of any kind becomes almost non-existant on his part. He curls up on the sofa, ignores everything except for the tv. All I can do is guess, and make him as comfortable as I can until he feels better.

    Once communication becomes easier btwn parties, you can deal with safety issues. Until you understand and have language skills how can you explain things like "if you do (a), (b) will happen". Language and communication are necessary for executive functioning to improve. How can you manage your own home, money, etc without language and communication skills. How can you not be scammed out of those things without language skills. Others like BOLTING which is a huge problem when your 7yr old runs a LOT faster than you do and is becoming very strong that one day you won't be able to control that bolt from happening when you are holding hands and walking down the road.

    Those would be my top 3 concerns/goals for my children.

    Posted by Fw2 farmwifetwo on 07/11/2009 @ 12:12PM PT

  4. Chantal  Sicile-kira

    Hi, Chantal Sicile-Kira here - My information "Top three areas"is based on interviews  conducted with different people on the spectrum from Aspergers to non-verbals who type. it was not a scientific sampling. It was a sampling of people who responded to my request for people who were willing to be interviewed, as well as people I know personally that I asked if I could interview them. 

    I hope this answers your questions, and i hope this book has been helpful.

    Chantal

     

    Posted by Chantal Sicile-kira on 07/11/2009 @ 04:34PM PT

  5. Dora Raymaker

    Thanks so much for the response!  The answers didn't surprise me, I was just curious.

    Posted by Dora Raymaker on 07/11/2009 @ 05:06PM PT

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  7. Kristina Chew

    Thanks to Chantal for writing here and thank you for writing your book.

     

    The quote about "behavior is communication" that I referred to is from a paragraph about Amanda Baggs. Other individuals interviewed include Donna Williams, Temple Grandin, Liane Holliday Willey, Stephen Shore, and Michael Carley.

    Posted by Kristina Chew on 07/11/2009 @ 04:49PM PT

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Kristina Chew

Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.

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