Asperger Awareness

April is Autism Awareness Month. This is the 2012 version of my attempt to raise awareness of Asperger's Syndrome, the close relative of Autism. Asperger's is a part of our lives because God saw fit to design my eldest son with the disorder. It seems to have popped up out of nowhere as there is no family history of it.
Asperger's is not 'new'. It has been around for a long time and was identified in the early 70s. It hasn't been "promoted" as widely as some of the other disorders, so many people have never heard of it. 
I feel passionate about educating the people around us about it because knowledge is power. Being misunderstood is  painful. I do not like pain. It is those who have been willing to be educated about the disorder -and have an open mind that such things even exist (is more than an excuse for bad behavior or poor parenting made up by medical doctors)- that have extended grace to our family on this unwanted journey.

One of the universal thorn-in-the-flesh issues for those of us touched by Aspergers is the assumption that because a kid looks normal he/she is normal and therefore should act normal. (Whatever "normal" is.) Age does not improve this misconception, it only changes the ways of being misunderstood. Recently I was reminded of this by an experience in town. I was shopping at a store that had a large item for sale. A man purchased one of these said items and requested help loading it into his vehicle. There were only 2 female employees working at said store at the time. The one who helped with the loading came back in the store provoked that a man in the next vehicle watched without offering to help. The 2 co-workers commiserated with each other about society going south these days. OK, that is my son you're griping about. While he is physically healthy and certainly capable of helping manhandle a large box into a small car, it would never occur to him to offer to help total strangers. Because he lacks the "normal" social skills, he commits numerous social blunders and has learned one lesson over the years- mind your own business. It's less painful than trying to be helpful, only to get yelled at for some infraction of rules you can't comprehend. He is a product of his environment.
And so are we as his family. I was reminded of this last week when I over-reacted to a situation out of fear. Fear of being embarrassed. Fear of being criticised. Again.  

This is our life. We are often judged harshly by the uninformed. Please, folks, make this your mantra- always give the benefit of the doubt! Or perhaps There is more than meets the eye.

One of the challenges of our life is that progress comes very slowly. I look back at our life a year ago and nothing has changed. I look back 8 years and I see progress. For example, other projects pushed my hobby of scrapbooking to the back burner and I have fallen behind by that far. When I recently pulled out 2004 pictures to scrapbook, I no longer remember details so I dug out my journals. Reading journal entries from that stage of our life is like reliving a nightmare. Thank God we have progressed beyond those Dark Ages!
It's been a long year in terms of seeking employment for our son. We explored possibilities on our own, we turned to the government for help and did the whole job coaching thing (we are grateful for the assistance received), we did the wait & pray thing... Nothing. We wrestle with resentment that jobs just seems to fall in everyone else's lap. Someone was recently helping brainstorm possibilities; it was actually encouraging instead of discouraging because everything she could throw at me we had already explored. Happy sigh. Affirmation that we haven't been sitting on our haunches, doing nothing; we have tried. A few months ago I read statistics that 30% of 'Aspies' cannot hold down a job for any length of time and 60% never achieve living independently. OK, so we're in good company. But in the Mennonite circles having an unemployed 18 year old hardly feels that way. It's lonely here.
As we speak, there is light at the end of the tunnel- a job possibility. We're keeping our fingers crossed.

Maybe someday I'll get around to making one of those infamous 10 Things You Should Never Say lists, but for now here is one thing you shouldn't say to the parents of an Aspie- He/she is really smart. [Inflect a hint of surprise in your tone.] "Really? I had no idea!" [Sorry, just a bit of sarcasm there. I can't do that at home because my Aspie doesn't get it- he takes everything literal.] Just because my son is socially clumsy doesn't mean he's stupid. Forgive me if I smack you upside the head, but that one gets me every time. And believe me, I hear it more often than you'd think. It's a hallmark of Asperger's that these folks have "special interests" and are experts on those subjects. In our house it just happens to be flying/airplanes/space. We -the family- are intimately acquainted with TMI [too much information] - we live with someone who regularly keeps talking long after we're finished listening, so no one knows better than we how smart this Aspie really is. We love him and put up with it because it's not often he comes out on top. He may be many things, but dumb is not one of them. And we're proud of him for that.

If you're interested in learning more about Aspergers, we recommend: A Mile in His Shoes DVD, books or audios by John Elder Robison- Be Different: Adventures of a Free-Range Aspergian OR Look Me in the Eye, novel House Rules by Jodi Picoult. All of these are available through my local library and probably are through yours, too.

I recently discovered a song with great lyrics- "The Half" by Mark Harris, that encourage me on this journey. You can listen to it here.

I look back on a thousand roads I wandered down.
And just as many dreams I've chased but I never found.
From where I stand I see the way,
You held my heart.
The times You closed the door,
And left the light on in the dark.

For every broken path,
And for every storm held back,
I shake my head in wonder.
But I don't know the half,
Of what You have for me.
What Your holding back,
That You don't let me see.
You give me everything I need,
And more than I can ask.
And I can't help but but be amazed,
And I don't even know the half.
I don't even know the half.

The God who whispered life in an empty space,
He's prepared for us an even better place.
I hear about the mansions and the golden streets,
But I cannot imagine all that heaven holds for me.
Even when I dream, its still beyond my grasp,
to try and comprehend it.

But I don't know the half,
Of what You have for me.
What Your holding back,
That You don't let me see.
You give me everything I need
And more than I can ask.
And I can't help but but be amazed,
That I don't even know the half.
I don't even know the half.

You cover me with wings of grace,
Hold me in Your sweet embrace.
When it comes to who You are,
I know its just a taste.
But I don't know the half,
Of what You have for me.
What Your holding back,
That You don't let me see.
You give me everything I need
And more than I can ask.
And I can't help but but be amazed,
I can't help but but be amazed,
And I don't even know the half.
I don't even know the half.