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Lives of Doctor Wives: Autism is not the end of the world.

Friday, May 9, 2014

Autism is not the end of the world.

by: Sandra Turner Zeigler

I remember the first time I heard the term Autism.  My son was approaching 2, and we were at my grandparents’ house.  We were all looking in awe at the tower Peter made of those mega, mega blocks.  It was 3 feet tall, a perfect 4 block by 4 block, colour coordinated tower, every block in its perfect place.  That was when my mother suggested talking to our pediatrician about having him tested for Autism.  I already knew that my son was a gifted lad.  He knew his alphabet; upper and lower case, by the time he was 18 months and could pick individual letters out of words. He could tell you not only what it was but what sound it made.  He could count to 50.  If you handed him a box of crayons, he would line them up, end to end, in colour order.  And cars.  And trains.  And blocks.  And food.  You get the point.  I also knew that something was wrong.  When I took him to play groups, he would take a car, go to the corner, and spend the entire time huddled in the corner, lying on the floor, watching the car roll back and forth in front of him.  He wouldn’t interact with anyone but his father, his baby sister, and myself.  He didn’t talk much, either.  Aside from pointing to things and naming them, there was nothing.  We were lucky if we got 2 word sentences at 22 months.  For months I thought it was my fault, that I didn’t give him enough social opportunities due to my own anti-social tendencies.  Or, maybe it was because of something I’d done that had caused his problems.  So, the first thing I thought when I heard Autism was “Wait, it might not be MY fault?”  That was followed by “What the heck is Autism?”  I learned the answer to that question very, very fast.  We spent the next two years trying to get my son tested for Autism.  We were told that because he showed affection (which he most definitely did), he couldn’t have it.  We were told that he was too young to have Autism.  This was 9 years ago, things have – thankfully – changed on that part.  I was told that he was too smart to have Autism.  I was told that since he was playing his favourite game of ‘name the shape’ with the medical student in the room, he couldn’t have Autism.  He entered a special-needs preschool just after his 4th birthday, and they gave us a grain of hope by referring us for testing based on what they saw.  Finally, 3 months shy of his 5th birthday, we were able to get in to see the developmental pediatrician and have her say “Yes, he does have Autism.”  I know that many describe these words as the worst moment of their lives, the moment where their world shattered.  For me, it was followed by a feeling of relief.  Finally, after almost 3 years, I knew that not only was it NOT my fault, but there was a reason for the behavior that controlled our lives for so long.  However, something else was gained from this appointment.  On almost every question the doctor asked us, from “Does he flap his hands” to “Does he avoid eye contact” to “Does he present with echolalia” (repetitive speech patterns), was answered by me with “no more than I do” and followed with “YES, he does” by my husband.  So, as we were adapting our lives to the increased insight into my son that we received from his diagnosis, we started looking in the very real possibility that he had actually gotten it from his mother. 

I am on the Autism Spectrum.  I have Asperger’s.  My eldest son is also on the Spectrum, he has High-Functioning Autism.  Add to that two of my sister’s children and (we suspect) my own mother, I am no stranger to the Autism epidemic.  I know that there are almost as many different types of Autism as there are people with it.  One of my husband’s cousins had Autistic-like traits, which turned out to be a physiological reaction to sugar.  Once the sugar was cut out of his diet, his symptoms disappeared.  A friend had a child with Autism that was due to gluten intolerance, and once that was cut out of her diet, the symptoms went away.  Yet more children’s Autism has been linked to genetic reasons, such as a chromosomal abnormality.  However, the cause to the vast majority of Autism – including that of myself and my son - is punctuated by a great big question mark.  This is why the puzzle piece is the symbol of Autism to many, since Autism is a puzzle.  Every person with Autism is different, with different levels of function, different symptoms, and different needs for dealing with it.  There are also as many theories of the ‘cause’ of Autism as there are people with it.  Vaccinations.  Tylenol.  Aspartame.  Food colouring.  Pollution.  Food additives.  Chemicals.  Genetics.  The list goes on and on.  However, not one of these things has been shown to ‘cause’ Autism in anything more than a correlation link.  “This happened around the same time as the Autism presented, therefore it must have caused it.”  I’m not going to go into the difference between correlation and causation here, because that’s not what I’m here for, really.  What I’m going to say right now is, I’m sure, going to be a shock to some who have read story after story of how “Autism ruined our lives,” or “I lost my child to Autism.”

Autism is not the end of the world.

Yep, a novel concept, no?  I’m not saying this to minimalize the sacrifices, pain, and suffering of those who are caregivers to people with Autism, EXPECIALLY those with low-functioning Autism.  It’s a job and a half, and it’s devastating at times!  I know, I live it.  Every single day, I live it.  I go to the IEP meetings and fight for the rights of my kid.  I watch him try to figure out the rules of a society that demands conformity.  I struggle every day with trying to help him learn how to control his Autism instead of letting his Autism control him.  It is HARD!  I’m won’t even start to tell you how even much harder it is to be on the other side, trying to cope with it in yourself.  But, it’s not the end of the world.  I read all these stories about how people blame whatever “cause” they chose to blame for their child’s Autism.  In my case, I blame genetics.  My mum has it, I have it, and my son has it.  Go figure.  Doesn’t take much detective work to figure that out.  That said, however, I am in most circles a well-respected, asset to society, fully functional member of the human race. My challenges are just different than most peoples'. Did I make my mother want to strangle me? Most definitely. Was it hard for my parents raising me? Yes. Is it hard to raise my son? Yes. But it is such a blessing at the same time. Autism has made me such a stronger person. I can see things from a different way than 'normal' people, and sometimes the world needs that! I can say from personal experience that I am a better person due to what I have gained from having Asperger’s. I find it interesting that I have never met a person on the spectrum who didn't feel similarly. Given, everyone I've interacted with and spoken to about this has been high-functioning, but not a one of them - us, I should say - has ever said anything that makes me feel that they see their Autism as anything other than an inseparable part of what makes us who we are.  I could not imagine doing away with my Asperger’s any more than I can imagine doing away with my love of books, or my right-handedness.  It is a part of who I am, and I am better for it.  Frankly speaking, I wouldn’t WANT to change who I am, and I suspect that the vast majority of those on the Autism Spectrum feel the same way.  Everyone I’ve talked with does.

That brings me to the crux of my hatred of the whole “such-and-so made my son/daughter Autistic.”  By blaming oneself for Autism (or any other disability, in fact) it communicates to the person with the disability that they are less of a person than their 'typical' peers. By saying “this thing I did MADE you have Autism,” that says loud and clear that due to your Autism, which I caused, you are defective.  Let me tell you, Autism is not a defect.  It is a challenge, it is a trial, it is a pain-in-the-neck, but it is not a defect.  It is simply a different way of being, and different does not mean wrong.  There is nothing WRONG with being Autistic.  Autism does not need a cure, Autism needs the understanding that we simply have a different way of contributing to the world than others.  Take my son, Peter.  Anyone who knows him knows that the world is a better place for having him in it.  He lights up the room when he enters it.  He is a model of unconditional love toward everyone he meets, always ready with a compliment or a hug.  His is insanely smart, as many with Autism are.  Remind me again how this is a bad thing! 
In all my years of interacting with people who parent children on the spectrum, and in interacting with people who are on the spectrum themselves, I have learned that every single person with Autism is special because of those challenges.  I don’t mean “special” like Sit in the back of the class with the safety scissors and glitter special, I mean improve the world in their own way special.  Maybe once we come to realize this, we’ll stop worrying about what ‘caused’ the Autism.  Maybe we’ll start seeing what Autism has to offer, and how we are short changing those very children we are trying to protect by acting like Autism is a disease to be treated, instead of a challenge to embrace.  

I stand proud in my status on the Autism Spectrum.  I am actively mastering my challenges, and stand ready to share with the world my unique viewpoint, my personal skills, and the strength that my Autism has given me.  I am an Aspie.  My son is Autistic.  And we are ready to take on the world.

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