Autism

I write about autism pretty regularly, so I thought I would add this page to explain where I’m coming from…

In 2002 I gave birth to a wonderful, perfect baby girl.  But before she turned one she was already receiving multiple therapies.  A long and painful journey had begun.  My daughter was eventually diagnosed with Autism Spectrum Disorder (ASD).

If you’ve met one person with autism, you’ve met one person with autism.  Each person with autism is affected differently.  Some people with autism cannot speak, seem to be in their own world, engage in self harming behavior, are never potty trained, have below average intelligence and very low IQ and will never live independently.   Some people with autism are brilliant, have an incredibly expansive vocabulary, are able to attend general education classes with help and can live on their own and hold down jobs and pay taxes.  There’s a lot of confusion about autism, because there are so many different ways it can manifest itself in each person who lives with it.  It isn’t called a “spectrum” disorder for nothing.

There’s also a lot of confusion within the “autism community.”  Disagreements about what causes autism, how to treat people with autism, whether to say someone “has” autism or is “autistic” (I use both).  Here are my thoughts:

Do I think autism is caused by vaccines?  Maybe.  Do I think it’s caused by genetics?  Maybe.  Chemicals in the environment?  Maybe.  Do I think special diets and or supplements can help?  Maybe.  What does all this mean?  NO ONE KNOWS FOR SURE WHAT CAUSES AUTISM.

What I believe is that it is probably some combination of nature/nurture.  There was no regression with my daughter after the MMR.  She was delayed long before she received that vaccine.  She was in physical therapy and occupational therapy before her FIRST birthday and speech therapy by her second.  We tried the GF/CF diet with her for over a year and didn’t see any change.  We went back to a regular diet and didn’t see any regression.  We tried supplements, we even tried B12 injections (administered by us at home – NOT fun).  NO change.  But I have a friend whose son made great strides on the GF/CF diet – so what works for one may not work with another.

Some people say autism is a blessing.  I’m not one of those people.  Some people are upset at those who seek a cure for autism.  I’m not one of those people.  It is true that each one of our children are priceless, beautiful – and I LOVE my daughter – but I hate this thing that stands in the way of her meeting her full potential.  Autism has stolen from her a future that should have been open to anything.  She has limitations that will stay with her for life.  I watch her STRUGGLE to learn the simplest things.  I see her younger brother surpassing her.  I see both her siblings’ frustration and anger over having a sister who’s “different.” I see her frustrations and deficits and it grieves me.  Yet she is a warrior, fighting to understand everyday.  I often say that she works twice as hard to get half as far as the rest of us.

Perhaps you feel differently, perhaps you strongly disagree with me, and that’s fine.  I’m not saying you have to agree with me.  We’re all entitled to our own opinions/feelings.  Again, I’m just writing about how I feel.  This is just my experience with my wonderful, trusting, sweet, innocent, lovable daughter.

**portions of this page were originally published in a post written January 9, 2014

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