Tuesday, May 21, 2013

Embracing Autism

Once upon a time...

...into the world, a bouncing, baby boy arrived. He was a chunk of cute at 9 lbs. 12 oz. His Apgar scores were perfect. He was the perfect picture of a healthy baby.

And then...

...then the developmental milestones began to lag. We hoped day by day that our bouncing baby boy would bounce up on his knees and learn to crawl, but it was not to be. Instead, he drug his little body along the carpet by one elbow. It was a unique method of movement, but not out of the range of normal according to our Parents As Teachers educator.

We waited anxiously to play pat-a-cake and interactive games but The Boy was not interested.  That was not quite out of the range of normal, according to the pediatrician.

Our precious boy could eat! Oh, could he eat. He could put away some Gerber. In fact, I've never seen so many Gerber baby food jars. I don't think we went through that many baby food jars with all of our other four kids combined. He just would not transition to table food. That should have been a red flag, but it was not really out of the range of normal.

He was a regular little Houdini. There was not a child-proofing device created that he couldn't untangle before your eyes faster than you could get it installed.

We had reached a point where other little ones were learning to talk, but not The Boy. He grunted. He pointed. He uttered two-word chunks of sound like "too-too nain" for choo-choo train. But talk, he did not. This, was a little outside the range of normal. At age three, The Boy entered a preschool for children with special needs and we worked with the school district to develop what would be an ongoing and constantly evolving IEP. The first support for the IEP was speech and language.

The Boy on the preschool playground
In kindergarten, The Boy was sure he was a Super Boy. He had good logic for this. Super Boys, you see, were going to come to the earth when all of the people became extinct. The Boy had accidentally arrived early. The people would become extinct just as the dinosaurs had before them and then all of the other Super Boys would join him and he wouldn't be alone. The Boy's teachers did not feel this was at all within the range of normal. Looking back, what The Boy was trying to tell us in his own way, was that he didn't fit in here with all of these neurotypical humans. He knew that he was different.

One teacher told us The Boy was retarded and recommended the school district administer an IQ test and evaluate him for special services. He stunned the person who administered the exam and she reported that he likely had a genius-level IQ, if only he'd been willing to cooperate with the test. She had asked him to spell his name, which he did. An hour later she asked him to recite the alphabet, which he did, minus all of the letters in his name. When she inquired about the missing letters he replied "I already told you the other letters in my name." The poor woman couldn't quite put her finger on it, but she assured us this child was 'different' but not retarded. Well...we knew that all along. 

Second grade rolled around and The Boy could talk just like any other second grader but he had struggled to learn to read so the IEP evolved from supports for speech and language to supports for reading. Less than a year later he was reading well beyond grade level. 

By fourth grade his state-wide math scores were phenomenal and his reading scores were pretty impressive too, but he had not picked up many of the typical skills that boys his age had long-since mastered. He was a walking encyclopedia of dinosaur facts, but he didn't ride a bike or tie his own shoes. He couldn't stand to get wet and would often stuff toilet paper under his clothing if he got a drop of water on himself. 

Life with The Boy was different. 

It was about this time that a psychiatrist put a name on different. The Boy, he said, had Asperger's Syndrome. It fit and we were excited. We finally had a definition of different.  There was an explanation for being just at the edge of within the normal range. And, it explained why The Boy felt like he was on the wrong planet. It is a feeling shared by many who are on the Autism spectrum. 

Then this thing happened. Puberty. Suddenly, we went from different to we're never going to survive the teen years!

Middle school brought its own nightmares. The easy routine of elementary school was gone forever and there were multiple class periods and teachers to adjust to. There were crowds of kids in the halls, The smells, sights, and sounds were overwhelming. And the whole mess mixed with the hormones of puberty made for a volatile combination. 

Many people with autism stim (short for self-stimulatory behavior) when they are overwhelmed. This leads to the typical pacing and hand-flapping often associated with autism. More rarely, some people with autism tend toward violent meltdowns. The Boy was of this flavor. When he is overwhelmed (when the sensory stimulation of the day has been too much) he enters a sort of fight-flight-or-freeze stage. This is not to say he doesn't stim. Trust me, we see (and hear) our fair share of stimming. 

Too often, the stress of a long day at school would push The Boy into a fight-flight-or-freeze moment. The teen years were filled with running away, threats of violence, and increasingly violent behavior at home. As a family, we engaged in many, many long hours of therapy and in-home case management to learn to reduce the triggers that would lead to a violent meltdown and to help The Boy learn to consciously choose to freeze (or step away) instead of fight or flee. 

We were on a first-name basis with our county's emergency personnel. They knew our home and situation well. Sometimes just a visit from an officer was enough to restore calm. Other times there were transports to the hospital. Some times we resorted to respite care outside the home for short periods of time. The in-home therapist was like part of the family, spending two to three nights a week at times in our home. The self-soothing behaviors that seemed to come so easily for some required a lot of practice for The Boy. 

Somewhere along the way The Boy had moved into high school and it was there that he really found his footing. The IEP had evolved to include supports for organizational skills and support blocks for each core class because school work was to happen at school and home time was for home stuff. Hence, no homework at home. All homework had to be completed at school during support blocks. The rigid thinking of autism was rearing its ugly head. 

In high school The Boy found his people- his Super Boys (and girls). He realized there were lots of people on the spectrum and he not only embraced his autism, he became a champion for it. He joined Anime Club, Environmental Club, the Gay-Straight Alliance, Computer Club, and Quidditch. He served on the Teen Advisory Board at the local library. He volunteered with the local animal shelter from time to time. He attended every school dance and served on the yearbook staff. This boy, who by the very definition of autism would have a  qualitative impairment in social interaction, was so social we could hardly keep up with his schedule. 

It was late in his high school years that a more formal evaluation changed his diagnosis to Autsim. The Boy has had to work really hard to learn to live with autism in a world that is predominantly neurotypical. He feels deeply the daily stress of living in a world that is too busy, too loud, too smelly, and too rooted in social skills that have no importance to him at all. Some days, this world is just too much, but he greets every day with new energy. He offers such profound insight to this world we live in. He finds beauty in nature,  creativity in art, and the best of human nature in the people around him. He is really quite amazing. 


It's easy to understand why my heart is bursting with pride this week. 

Once upon a time there was a little boy who was diagnosed with autism. 

And he grew into an amazing young man. 

And he graduated. 

He closed one chapter of his life and he opened a new one. 

His autism is not cured. It is not conquered. And it will not cease to present new challenges as he enters college. 

He has EMBRACED his autism. 

And I could not be more proud of him. 

*Posted with permission from The Boy


  1. This is so touching. I have a similar story with one of the first Aspergers diagnosed kids in the Park Hill School District. He is/was very high functioning, but in the quest for social skills many mistakes were made in his education, and while he graduated, he stopped being a stellar student. What did happen was a huge change in the schools and their approach to these unique students! They have come a long way in the past 12 years.

    Congratulations!!!! By the way, my son graduated 5 years ago. He has since held down 2 jobs, married and recently entered the military where they will train him in IT for military intelligence. Your son will exceed your wildest dreams thanks to parents who love him, embrace his strengths, encourage him and celebrate his successes. God bless you all!

  2. Thank you so much for sharing your inspirational story. It helps lead those (me) who are just beginning our journey.