How Learning About ‘Different’ People Can Decrease Ignorance

by Brad Isaac on April 2, 2009

My wife and I didn’t know we had a problem.

Our son had gone from being a kind and lovable boy of 10 to someone prone to violent tantrums, outrageously offensive remarks to other kids, parents and teachers.  He was getting suspended from school on a weekly basis for incidents I thought were borderline crazy.

I complained daily that he never seemed to grasp cause and effect.  He’d get into trouble at school for something and both the school and his parents would punish him.  The very next day, he’d go in and repeat the same mistake.  Lather, rinse, repeat – we’d go through the same dance again and again.

There were late nights when he would obsess about a grandparent who died 2 years prior.  His tearful detailing of the subtleties of human death, dying and decay, I literally got chills!  It was like living with the kid from the Sixth Sense.

We wondered if he had been abused by someone while we weren’t around. The doctors were baffled and could not give us any answers.

At one point I considered the possibility that after his appendix burst and had emergency surgery, maybe he had suffered a mild brain damage from the anesthetic or perhaps the poison from the appendix caused the problem. Many nights we stayed awake trying to make sense of it all.

How does a parent deal with a child who seems to get more odd by the day?  How do you stop him from acting out?  How do you stop him from hurting himself?

Well, if you are me, you search.

One doctor had hinted at the diagnoses for 3 months before he called me in for a 1 hour meeting.

“Listen,” he said.  “You have a great kid there.  He is likeable -  I like him and most everyone will like him.  He’s bright.  He’s got a caring spirit.  And I know you and your wife are on his side – some parents aren’t.

…But you seem resistant to hear what I am telling you.”

“Ok,” I said.  “What are you telling me.”

“I believe your son has autism. “

And there it was.  He said it.  I dreaded with my very soul to hear that word.  I felt my chest sink into my stomach.  Adrenalin hit my bloodstream.

No.  I said.  He’s too smart.  He’s like a mechanical engineer – just geeky and awkward.  That’s all.

But inside I knew.

The doctor continued talking, but I couldn’t hear.  I nearly panicked about what it meant  for my son’s future.  What it meant for my family.  What about schools? How would we survive with this horrible curse thrust upon us?

“..His behaviors, social skills and inability to see cause and effect are extreme enough to warrant that diagnoses with no further testing.  However, I recommend you take him in for more in depth testing so proper school arrangements could be made.”

Thus began a new journey.  I started a new education into the world of autism spectrum disorder, especially Asperger syndrome.

And if you are expecting me to say everything has been peachy keen since, sorry this isn’t that type of post.  But it hasn’t been nearly as horrible as I expected.  There have been many lows but some memorable highs too.

Today is autism awareness day. It begins the official autism awareness month.

As a parent of a child with Asperger’s syndrome (mild-high functional autism) this today is a good opportunity for me to help raise awareness.  Though I am still new to it all.

But I have decreased my ignorance with regard to autism in several positive ways:

  1. I discovered my son wasn’t abused, poisoned, brain damaged, or seeing dead people
  2. I discovered he is still smart and autism won’t decrease his brain capacity.
  3. I discovered that although it may not be natural, he will one day learn cause and effect.  We’ve already experienced improvements in this area.
  4. I learned there are hundreds of wonderful families in my area going through the same thing who are wanting to support and help.
  5. I learned there is a wealth of information being shared among parents of autistic children and that my wife and I could get support and information just by getting involved.
  6. I’ve discovered that it is still going to be difficult much of the time, but there are wonderful spots of clarity along the way.

That’s my story.  Let’s hear yours…

Has your life been changed by an autistic child or relative?  What discoveries have you made about autism that changed your original misconceptions?  I encourage you to share your story in the comments.

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April 3, 2009 at 4:50 am

Very interesting story, i wish you good luck in ur future.

B. Riley April 3, 2009 at 10:29 am

While this is difficult for anyone in your shoes, I do find it amazing how much insight you now have into how this affects your son. I am sure that makes daily life much easier than before.

I can only hope that everyone in this situation can develop the same level of understanding.

Brad Isaac April 3, 2009 at 11:03 am

Thanks. Autism is many layered and complex. So I don’t feel like I have a lot of insight. I still have plenty to learn – and feel I’ll never stop learning about it.

But for now, simply knowing has helped. Now we at least know we have options. Before, we were trapped in what seemed like an unsolvable problem.

Deborah Schmerda April 3, 2009 at 3:28 pm

Brad, Our prayers are with you and yours as you travel on this journey. I am coming late to the game. I married a man whose brother, Bill, has autism, knowing that once his father passed away, Bill’s care would pass to us. Seeing as how my husband’s grandfather was 101, I figured we’d be retired when that time came and we’d easily integrate Bill into our lives. My husband’s grandfather passed away two years later, as did his father (both due to illness). Bill, who is now 47, has a sweet heart, and I so wish that he had had the opportunities your son has. I’m certain that a more focused regimen and different educational tools would have brought him further up the spectrum. My husband’s parents did an awesome job with Bill (his mother passed away over a decade ago), given the dearth of information and educational opportunties in the early 60′s. He dresses himself, is very compliant and can entertain himself literally for hours building puzzles and flipping through magazines. Since living with us, he has learned to no longer be afraid of cats and small dogs, to say please and thank you (being from the South, it’s something upon which I insist), to look at people’s eyes when he talks to them. He still tends to mimic, still stims, uses the same “scripts” over and over; he is still autistic, but we celebrate every small improvement, as he is still learning and working at integrating into “normal” society. The earlier autism is diagnosed the better; kudos for being alert to possibilities, for continuing to search for answers. Do everything you can now; I’m certain your efforts won’t go unrewarded. Have a fabulous week. Never give up.

Brad Isaac April 5, 2009 at 1:30 am

Debora, I appreciate your thoughtful post. You’ve given me a lot to think about. Things you said ring true for us too. The mimicking – even if mimicking a 3 year old is so frustrating. But on the other hand, some of his theories on space and physics are astounding.

glendagable April 5, 2009 at 12:28 am

I just saw this after looking at your great How-to on binding books

I have 4 boys but our second boy was the one with true Autism/Asperger’s, we noticed the echoing of people and disney movies when he was 2 but it was a mother of a child already in early school intervention that told us to have our son evaluated. Otherwise, we wouldn’t have known there is a disorder such as Asperger’s. I’ m really glad you wrote this and put in the Autism Awareness Month info. Here’s a few other links

My other 3 boys have Attention Deficit and although more aware of social rules, they still struggle with predicting consequence (same mistakes, etc) so I wonder if there’s a link. My husband and I made a joke when we first met, how we had the same problems in school, girls were handled differently than boys, boys were “trouble makers”.

I’m glad you posted this so others may know there’s help and children like ours have a great chance for a productive life. My son is now a high school senior and has already enrolled in a local college for Computer Design, great test scores, he’ll be commuting from home. The other boys are harder to get through school because routines work so well with Asperger’s kids, ADHD kids are hard to get into routines.

Thanks again,

David April 5, 2009 at 3:45 am

Has anyone suggested “An Anthropologist on Mars” by the neurologist/author Oliver Sacks?

Sacks is one of my favourite authors and he is also a physician. He writes a lot about autism and a number of the chapters/stories in the above book are about high-functioning autistic people.

I wish you and your family much good fortune as you now embark upon this journey. There is so much awareness today that I hope you find a path that suits you and your son.

Brad Isaac April 7, 2009 at 8:48 am

I like Sack’s work too, but hadn’t heard about that book. I might have to check it out. Although, I must admit, I walk past a pile – yes PILE of books about Aspergers books in my house every day. These were given to us by family and friends. I’ve got a lot of reading to do.

Shelley Rivers April 6, 2009 at 3:01 am

My oldest has Asperger’s. He was odd from infancy, and now he’s 16. Smart, articulate, a creative thinker wih a twisted sense of humor, but socially awkward in the extreme. Not a good fit in high school. Methylphenidate really helped him when he took it, not just to focus on schoolwork, but also, to focus on social cues. His non-custodial dad was very opposed to medication, and successfully convinced him to stop taking it several years ago, which was devastating academically and socially. He’s agreed to take classes independently this year, but refused to go.

Now I am preparing to be a high school teacher and spending time in his old school, I can easily see the challenges he had there. Everyone using whiteboards, with lights glaring off them. Teachers who write too small, who cover all the vertical surfaces with posters and notes and expect kids to find their assignments written there somewhere. Kids who are noisy and disruptive incite the ones without good judgement, easily. Chaos in the hallways through the day’s multiple transitions. A daily schedule that is different every day. No wonder kids have trouble more often, and no wonder he felt like he was drowning.

I have learned a lot that I will carry with me into teaching, from raising this kid (and his younger sibs). A lot about what we assume when we assume an absence of disability, becomes apparent when you’re spending your time with these kids. But the biggest lesson, which has nothing to do with disability and everything to do with humility and insight: Why am I still doing this if it doesn’t work?

You’re the expert on your kid, whichever labels he ends up with. You know and will learn what works for him, and you’ll have to bust ass getting teachers in line with that and keeping them there. You’ll have to watch him because he won’t know how to express himself so you understand, and he’s going to feel lonely and crazy as he realizes he’s different. You will most of all teach him to accept himself, for what’s “normal” and what isn’t, and how he can work with his limitations and abilities to be happy and independent.

Best of luck. You’re on your way!

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