Saturday, December 22, 2012

The face of autism


With the dissection of the tragic events in Connecticut, compounded by the vicious media spin being spouted all-day, everyday, it seems that everyone has developed an opinion on mental illness, a form of autism called Asperger's, or both.  Add to that, the insanity of the NRA ("the only thing that kills a bad guy with a gun is a good guy with a gun"), something the folks in Littleton, CO might not buy into since there was an armed guard present at the scene of the horrific Columbine shooting, there had to be a glimmer of hope somewhere.  I was searching; we all were searching.  Deep and  hard.

Ironically, the glimmers of hope and humanity came in unexpected places and through devastatingly sad stories.  To know at least one child murdered in Newtown died in the arms of his aide, a teacher trained to support youngsters with autism, made me weep for all the victims even more, my heart shattering into more pieces than I thought possible.

In millions of households there were billions of tears shed during the past week for children and adults we did not know.  In response, there was a wonderful campaign, hatched via Twitter (hash-tag #26Acts).  While my family has joined, with pleasure, in our commitment to commit these random acts of kindness, it was still vexing my soul that autism had been part of this rage, both in the victims and allegedly in the killer.  

When Autism Shines created a forum for people to share the faces of autism, pictures along with captions about the beautiful, positive things these kids live with, I knew immediately that my son would be included.  It's an opportunity to say something to the world.  Something very important that people need to hear

I have nothing profound to add to the gun debateI profess, as I always have, that no one needs to own an automatic rifle for self-protectionThat access to firearms and ammunition is completely out-of-control and unregulated if one considers you can buy anything off the internet.

I simply want to share, maybe shout from a mountain top, that autism isn't violent.  It's not all bad either, although it certainly doesn't bring sunshine and roses to our lives, or Andrew's, all the time.  To my knowledge, my little man has never picked up a toy gun, even a water gun.  He gives hugs, kisses on the head, and plays with stuffed bears.  Andrew is a face of autism and, despite my obvious bias speaking as his mother, it is one beautiful face indeed.  He is proof autism is shining.

Photo by Kristin Chalmers Photography 

Sunday, December 16, 2012

Spin hurts

One of the unfortunate results of a tragedy like the one in Sandy Hook is that the media spins it into whatever it wants.  There is enough real grief and suffering to not have to embellish and dramatize.  Yet, somehow, this has turned into yet another "autism causes"/"autism is caused by" story.  As a mom, as an advocate, as someone who has seen real mental illness in children and in adults, I don't buy the media spin.  You shouldn't either.  Autism doesn't cause violence.

I know the gig.  Many children have mental illness.  Many can not get the help they need.  Some don't get the services because their parents may not advocate for them, because they don't know how or don't want to because wanting to means accepting there is a problem.  However, I suspect the vast majority of loving moms and dads of kids with mental health needs try like hell to get them the right services.  It becomes a mighty tug-of-war:  the medical community and insurance company say it's the school district's responsibility, in turn the school district says it's the medical community and insurance company's responsibilities.

But what the hell does it have to do with autism?  This young man who shot up a classroom of first graders may or may not have had special needs, autism has been mentioned.  I am here to tell you having autism does not equate with being violent.  Many kids on the autism spectrum have "behaviors"; many carefully measured.  Some kids have meltdowns.  Some kids are obsessed with violence.  But, the children with autism I know are some of the most sensitive I've met and they tend to shut the world and other people out.

Here in Massachusetts, a high school student with Asperger's Syndrome killed a classmate a few years ago.  Awful.  Sad.  Tragic.  It turned out he was moved from an appropriate school program (ie: big $$$) to a cheaper placement.  Saved the school district money, let them argue that inclusion was his least restrictive environment, obviously convinced his parents of the same.  The results weren't good.

People can do horrific things.

I hate violence.  I despise guns.  I don't like to watch scary movies.

But, I'm not normal in my dislike for all things violent.

We live in a society which celebrates violence.  Forget video games (which my kids don't play), look at what teens (and tweens) are most obsessed with in pop culture:  The Hunger Games.  I know they all claim it has grand meanings and parallels to today's world, but all I see is a warped story of kids killing other kids.  Graphically, with people cheering them on.

My autistic son has tantrums.  He has received mental health treatment in the past, specifically for the severe dysregulation autism and his neurological system bring him.  But, he doesn't go with me to shooting ranges.  Heck, he doesn't play with GI Joes.  My son plays with Build-A-Bears.  He wants to be a meteorologist.  He has amazing savant skills with calendars and numbers.  He has empathy and knows when to give a gentle kiss on the top of my head when I am frustrated or sad.  More often than not, he now says he is sorry when he has done something to cause upset.

I don't know anything about Adam Lanza.  I know my son and his story, along with the stories of many kids I work with, coupled with the up-close view of the adult mental health system I got a few years ago because of a friend.  I do know autism is confusing and complex, has no known cause, and no known cure.  As well, I know it doesn't pre-dispose anyone to getting weapons and killing 27 people.

My heart and prayers go out to all the victims and their families, to their community, and to every school teacher who has to walk into their classroom tomorrow morning and teach kids who very well may be afraid this could happen to them.  I also know the pain this causes moms and dads, to see such horror, and then to have to talk to your kids about it, so they hear it from you and not a seat mate on the bus or classmate in the hall, or even in a conversation in the packed mall corridor. My kids are old enough to have those conversations and I am cynical and wise enough to know if I didn't talk to them, others would.

I understand this is completed unrelated, but my daughter turned 4 on September 11, 2001.  The shock and horror I felt that day, and in the days following, is what the past few days have felt like here.  But, media, please leave autism out of this.  Please focus on gun control; for the love of God, can someone tell me why anyone *needs* an assault rifle.  Our founding fathers didn't have this in mind when the 2nd amendment was written, did they?

Hold your babies tight tonight.  And, remember, if you've met one child with autism, you've met one child with autism.  Each girl or boy has their own unique challenges.  I can't control Andrew's diagnosis, but I can change what he is and is not exposed to.  I also know he is a gentle, kind, sweet and funny soul a lot of the time.  No one can convince me his diagnosis makes him more likely to want to hurt people.

Choose your words carefully and remember the "spin".  Sex sells.  Violence sells.  The more outlandish the news, the more people who will tune in.  At this point, I'm not sure fact and fiction can be deciphered when discussing  the person who committed this heinous act of violence.

Be well, friends.  And, give your babies another kiss before bed.