Saturday, April 2, 2011

World Autism Awareness Day - Really?


April is the official Autism Awareness Month, and today is World Autism Awareness Day.  Didja know?  I'm slow on the uptake, even with a child with Asperger's Syndrome.  I didn't realize what month it was going to be (aside from, "Thank God March is OVER!") until two days ago.

Awareness is a nice thing.  It's a good thing.  But, really, I don't think awareness of autism is the big issue in the United States any more.  It seems to be the latest cause celebre, the disorder or disease of the moment - it's been in the news and on talk shows, blogs and websites regularly for quite some time now.  It's been an "awareness" topic often enough now that a whole industry of people peddling therapies and programs has sprung up around it, like vendors at a fair - some are legit, and some are snake oil salesmen out for a buck.  We get it - autism is an issue that's more common than we think, there are many ways to try to treat it, and it's not going to go away any time soon.

I think what we need now is a focus on lifelong support for people with autism and autism-related issues, and for their families and caregivers.  Raising an autistic child is just the beginning of the journey, since the autism very rarely "goes away" with treatment, although great improvement in symptoms is possible.  Autism spectrum disorders are a lifelong issue, and often they are a true disability.  (The term "disability" gets fuzzy on the mild end of the spectrum, and some people take great exception to using that label.  I say, call it what it is in each individual case.)  The emotional and financial burden on their parents and caregivers is immense, and not fully understood by anyone who has not personally walked this path.  We need help, not just for our minor children, but for our young adults, our college-age students, our kids when they become adults but still need assistance, whether they need total direct care, help finding and succeeding in a job, or just occasional emotional support. 

There are lots of tools and programs now for children with autism - therapies and supplements and educational strategies to suit every diagnosis and the perceived cause of each individual's autism.  (Since no one yet knows what causes autism, and it's likely that there is more than one cause as well as genetic predisposition or causation in many cases, there are therapies that target all sorts of possible "causes."  Some work for some people and not for others.  I'm not going to debate causes or treatments here and now.)  Specialized therapy (like ABA) can be crushingly expensive and insurance coverage is spotty, varying widely by state and insurance company.  I believe that autism SHOULD be covered by insurance, 100%, just like any medical/neurological issue - that's a battle still being fought around the country.  But, once a child ages out of the special education system at 21, support can be much harder to come by.  Just as they're ready to move out into the world, they can lose their services and support network.  Universities, colleges and vocational schools often don't have systems in place to help them succeed.  Again, some do, and some don't, and some get by with a mishmash of services.  Looking at our son finishing the first half of his educational journey, I can't believe he'll be18 in six more years.  His adulthood is on the horizon.  We have to get ready NOW.

So awareness is all well and good - but awareness without action is pointless.  Just like faith and works:

"What good is it, my brothers and sisters, if someone claims to have faith but has no deeds? Can such faith save them?  Suppose a brother or a sister is without clothes and daily food. If one of you says to them, 'Go in peace; keep warm and well fed,' but does nothing about their physical needs, what good is it?  In the same way, faith by itself, if it is not accompanied by action, is dead."  (James 2:14-17)

We need to take our awareness and turn it into action.  It can be as simple as offering a sympathetic ear or a helping hand to someone we know struggling with the burden of raising a child with autism, or writing to your elected officials in support of legislation related to autism.  You can join an organization, volunteer, donate, speak out - any positive action is good.  For people of faith, prayer is essential and effective, and not to be underestimated, but prayer plus action puts visible feet to your faith.

I'm aware.  But am I doing anything?  Yes.  I hope that you will consider doing so too.  Thank you!

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