Autism Awareness Day

I’ve often commented that I wanted Autism Awareness to become Autism Understanding.   I hear people protest the stereotypical portrayal of autism on this day, saying if you’ve met one person with autism you’ve only met one person with autism.  But what does that really mean to someone who hasn’t been exposed to the intricacies of the spectrum?  In honor of Autism Awareness day, I’d like to describe  my son G who has been diagnosed with Aspergers Syndrome, giving an honest portrayal of both his gifts and challenges.  I want people to see how in some ways he is just like any ‘typical’ 5 year old, in other ways he is just like any other child with autism and in some very important ways, he is uniquely G.

– G’s language developed appropriately in that he had developed the proper amount of words by 18 months, 2 years, etc.  But he has an expressive language delay, which means he has trouble expressing his wants and needs in a timely fashion.  This would cause intense frustration and result in meltdowns.  He has gotten much better, but I still carry a couple granola bars in my purse at all times because by the time G says, “I’m hungry,”  he is usually ravenous and cannot wait another minute for food.  He also takes a very long time to express himself and gets frustrated when his well-intentioned grandparents try to finish his sentences for him.  The best way to help him express himself is to wait patiently no matter how many times he has to go back to the beginning of this thought and start over.

– G makes eye contact.  It just isn’t the sustained eye contact that is judged appropriate.  He tends to either flick his eyes away for a second or two and then make contact before flicking away again, or he stares into someones eyes without ever seeming to blink.  And when he is trying to express something that is difficult for him, he will look over the listener’s shoulder until he can get his words out.  We’ve found through discussions with G  that looking at someones mouth is easier for him when listening to someone speak.

– G doesn’t have the same awareness for where his body is in space that most people have.  When he walks through his messy playroom he doesn’t walk around his toys, he walks in a straight line to his destination by walking on his toys without ever noticing.   He has no clue when he is stepping on someones foot or when he is bumping into people.  This is exacerbated by the fact that he walks on his toes which makes his balance precarious at best.  When sitting he wiggles and sways back and forth – not in the stereotypical rocking associated with autism because it is more chaotic and less rhythmic.  Children next to G in circle time would complain that he was knocking into them and he never knew.  A wiggly cushion on his chair has helped with this issue.

– G’s language is very concrete.  He doesn’t understand figures of speech (although he is learning) and cannot intuit the meaning of a phrase by considering the context.  As parents, we try to be very literal with our language and never say anything we don’t mean.

– Because G’s language is very concrete he prefers reading non-fiction books to fiction.  Instead of fairy tales we read the Children’s Weather Encyclopedia or the Marvels of Modern Science at bedtime.  His ability to understand complex concepts like how a machine works or what causes thunder is amazing.  No ‘angels bowling in heaven’ myths for us!

– G is very curious about how things work.  If he asks a question, he wants an honest and specific answer.  “I don’t know how that works, lets look it up,” is an acceptable answer.  “Magical fairies” is not an acceptable answer.

– G can’t lie.  He has not developed the ability.  He tries – particularly when he knows he’s about to get in trouble, but the best he can do is to say, “I don’t know,” or “I don’t want to talk about that.”  As a parent, I enjoy this aspect of autism.  🙂

– G strikes out physically when he is frustrated.  Meltdowns involve hitting, kicking, headbutting and once involved G throwing large rocks at us.  We have come a long way to understanding what triggers meltdowns and avoiding or addressing those triggers.  But G is very big for his age and now that we can’t lift him and carry him away this is a concern.  I have learned to become less sensitive to meltowns in public, although it is still hard for me.

– G has difficulty understanding the complex social situations that develop among typical kindergartners.  For example, the kids on the playground love to play chase for a bit and then transition into a different activity without having to speak of the change.  G doesn’t pick up on those non-verbal cues and continues to chase.  This causes the other kids to get very frustrated and yell at G.  G responds to what he perceives as the sudden anger of his friends by hitting them.  G’s school is being very proactive about addressing this, but progress has been slow.  In another example, G recently got in trouble for hitting a child because  “S  told me too and she is my friend so I did it.”  I am very distressed that the kids understand that G will do whatever they tell him and take advantage.  This is also being addressed, but is still very upsetting.

– G is extremely booksmart.  Although he is in kindergarten, he is currently sitting in with the 2nd graders for math.  He’s getting marked down on his homework for doing too many calculations in his head instead of writing them down on paper.

– G started reading sight words right as he turned 3, was sounding out complex words by 4 and can read darn near anything at 5.  He sits in on the 1st grade gifted class for literacy.  His comprehension of what he reads lags behind his reading level and this is being worked on at home and at school.  He also lacks the age appropriate ability to predict what happens next or what the character may feel based on events in a story.

– G has an inability to watch scary or suspenseful scenes in movies, perhaps as a result of his inability to predict what will happen next.  He hasn’t finished Finding Nemo because of the scary sharks (after we skipped past the whole mother dying scene) the Cheshire cat is too scary in Cinderella, the doorman is too mean in the Curious George movie, and the octopus robot in the Incredibles is too scary.  Although he will skip past the robot to finish watching the Incredibles.  Seeing Polar Express in the movie theater with his kindergarten class was completely out of the question.  He loves the ‘buddies’ movies with the golden retriever puppies who have adventures in Air Buddies, Space Buddies and Snow buddies.

– G is sensitive to sudden and loud noises like fire sirens or those automatic toilets in public bathrooms.  He’ll slap his hands over his ears and scream.  If he can, he’ll run away from the source of the noise as fast as he can without regard to running into traffic or into a crowd where I can’t get to him.  I’ve learned to warn him of the toilet flushing and block the stall door with my foot if he’s in with me.  (Although he’s getting too old to accompany me to the bathroom)

– G relies heavily on routine.  Routine is very comfortable to him, unpredicibility is scary.  He needs to be prepared for small transitions by giving him 5 minute warnings.  Large transitions like starting school need to be prepared for with social stories and role-playing.  But too much prep for a big transition will trigger anxiety so we walk a fine line.  The period before and after holiday break is particularly difficult for G because his stable routine is interrupted with holiday parties, events and seemingly endless days away from school.

That’s all I can think of right now.  Do you have an autistic child?  I would love to hear about him/her!

ETA:  Are you an autistic individual?  If so, I would really love to hear your insight and experiences.

p.s.  Sorry for the numerous updates.  I worked on this in draft for quite awhile but even after I thought I was ready to publish I thought of other qualities I wanted to talk about.  After all, G is my favorite subject!

Published in: on April 2, 2009 at 12:11 am  Comments (5)  

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5 CommentsLeave a comment

  1. This blog’s great!! Thanks :).

  2. G sounds perfectly wonderful to me. Especially because he sounds so similar to my own boy. 😉

  3. I love to hear about other people’s kiddos. Your G sounds an awful lot like my middle one.
    He sounds wonderful!

  4. G is wonderful! I love reading about the little ones…it reminds me of when Evan was younger. The good and the bad…I miss those days.

    Thank you for sharing!

  5. When my son was younger, people would say, “I don’t know what you’re talking about with this autism thing. Your son seems pretty normal to me.” Which drove me up the wall. I wanted to drag these people home to see him gagging at the smell and appearance of certain foods, his habit of lining up toys in rows, his incessant talk about whatever his narrow topic of perseverative interest might be.

    Now, people who meet my son, a strapping 16-year-old, they say, “Does he have autism?” The awareness and understanding in our community is quite high, which is great. But now I wish they’d look at him and see “normal”.

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