Deep Pressure and Other Autistic Adventures

In case I haven’t told you lately, my children are amazing.:)  They are my heroes and the coolest people you could ever get to know.  Those of us who are blessed enough to be loved by them are among those most blessed.

I listened to a podcast today that I think almost everyone should hear and consider.  I’ve known for a long time through personal experience that autistic individuals are absolutely awesome, and I love to hear interviews with autistic adults who are living full lives and are able to articulate a little bit about what it’s like to have autism.  In this excellent interview, Stephen Shore describes an exercise he uses when speaking to large groups of neurotypical individuals to help them understand.   In essence, he selects random people from the audience to play a “round robin” storytelling game.  He instructs them to start a story aloud with one line and then has each participant continue the tale with a line of their own.  This is a fast and easy exercise, much like social interaction for neurotypical individuals, who are interpreting social cues and integrating sensory information at lightening speed without any conscious awareness.  He explains to them that for autistic individuals, interpreting social cues and integrating sensory information is a much more formidable cognitive task.  So much so that by the time these functions are engaged, carrying on a conversation feels nearly impossible.  At this point, he asks the participants in the exercise to start a new story aloud.  This time, they are not allowed to use the letter “n.”  Whether at the beginning, middle, or end of the words they choose, the letter “n” must be completely omitted.  Suddenly the game becomes nearly impossible for the participants.  At this point, Dr. Shore notes that people in the audience “are very interested in their shoes.”  And he says, “You know, anxiety is a problem for a lot of autistic individuals.  Perhaps that’s why eye contact is not so easy for them either.”

On more than one occasion, my teachers and I (I have to call them my teachers.  They teach me as much as they teach my kids.:)) have lingered in conversation over the things through which our amazing kids learn to navigate as they grow.    We are in awe of them and their ability to overcome the challenges they face.  Autistic individuals are among the most persistent, determined, and resourceful people on the planet.

A lot of autistic individuals, my son among them, crave deep touch pressure.  The right amount of pressure applied to their bodies soothes and calms them and even helps them to self regulate sensory input.  

Some of the first (and best) information I discovered in the pursuit of all things relevant to understanding my children were Temple Grandin’s own descriptions of her need for deep pressure.  I was absolutely awed when I read that this exceedingly cool autistic woman had actually built a machine (“the squeeze machine“) for herself that was calibrated to help her achieve exactly the amount of pressure that she craved, with knobs within her reach which allow her to adjust the pressure up and down by the tiniest increments.  On her website, she has even posted plans for building your own!  Just wait until my son gets old enough to understand and implement those.:)  Around the same time that I was reading Temple Grandin’s book, I read Dr. Stanley Greenspan’s book The Child with Special Needs, wherein he describes using pillows to make a “pillow sandwich” out of a pressure seeking child (I have also heard this method described using burritos and hamburgers—choose your own edible.:)).  What a wonderful idea, I remember thinking.  The trouble is, sometimes it takes a while to figure out that deep pressure is one of the many things your child needs.  It’s that puzzle piece that gets stuck in the corner of the box.  You just keep trying things, and eventually your realize you were missing an important piece.

Adam has always had what most of us would call “unusual” ways of soothing himself.  For years, he refused to sleep with his head on his pillow, but prefered to throw himself under the covers until all that remained visible were the bottoms of his little padded feet.  He sweated profusely in this configuration, but that never seemed to deter him.  About a month ago, Adam started hoarding every blanket and pillow he could find in the house.  I used to put them away while he was at school, but everyday he’d just come home and gather all of them again.  About the same time the girls stopped protesting about him stealing their blankets (“Hey Adam, Grandma made that blanket for me.”), I stopped trying to put all of them away.  Now I just stack them neatly on his bed. After a long day at school, Adam marches immediately to his bedroom, where he sheds his shoes and socks and puts them away.  Then he lays on his bed and piles every blanket and pillow he has on top of himself from head to toe.  He balances all of them carefully on the bed first, and then climbs underneath, willing none of them to fall on the floor.  I start homework with the girls, and about 20 minutes later, Adam reappears, ready to do his own homework.  Every night, he repeats this ritual when it’s time for him to go to sleep.  This has become so important to Adam that he searches out other objects that have blanket or pillow-like qualities to add to his growing “pressure mountain.”  He reminds me of a bird building a nest.  I once read about a wren out in California who built a nest entirely out of discarded office supplies.  I laugh out loud on a daily basis at the “extra” things I find in Adam’s room.  His homemade squeeze machine almost always includes a pair of incredible hulk gloves that my dad gave Kevin as a fun-with-the-kids gift.  

Sometimes, I find towels and wash cloths that had been waiting for the washing machine mixed in with Adam’s pile of “fluffy stuff.”  I have a few treasured blankets and pillows that are kept in mine and Kevin’s bedroom and office, and the only reason Adam hasn’t pilfered these as well is that we keep the rooms locked and strictly off limits to the kids when we are not with them.  I have seen him salivating over them when we spend time together in those rooms, and I can tell he’s thinking, “If only I could get in here when Mom and Dad aren’t looking…”

What amazes me and even draws tears to my eyes is that since Adam has such difficulty telling us what he needs, he has figured out his own way to get the deep pressure that calms and soothes him.  What a cool kid.

The only thing for which Adam currently has similar passion is his new communication notebook.  Having watched Adam search his mind for the right words to say and struggle with whether it should be “I have” or “I need” or “I want,” I knew I needed to find a tool that Adam could use to guide and train his memory.  Our sentence strips had become too limited; there was always a sentence we didn’t have attached.  One of my teachers asked me to help her duplicate a communication notebook that a private speech therapist had made for one of her students for use in her classroom.  Instantly, I decided I needed to make an extra one for Adam.  It has pages of useful communication helps all tabbed on the side so that we can find what we need quickly.  We’ve started with just a few pages to help Adam learn how to use the notebook as a tool without overwhelming him right at the beginning.

Adam LOVES this notebook (Actually, Riley loves it too and is very jealous, even though she really doesn’t need anything like this anymore.).  He carries it everywhere with him and even acts out the words.  In fact, on the way out of church on Wednesday night, he was looking at his communication notebook and came to the words “take a break.”  He immediately reclined on the asphalt and put his hands behind his head.  I laughed out loud and told him to get up, so he looked down at his book again and declared “hug!”  He wrapped his arms around my waist and we headed to the van.  As far as I’m concerned, he can practice that one often.:)