Thursday, April 02, 2009

WORLD AUTISM AWARENESS DAY

It’s World Autism Awareness Day, as declared by the United Nations General Assembly. How nice.

And of course, this WAAD is simply a lead-in to “Autism Awareness Month.” Over at Age of Autism, Kim Stagliano has suggested renaming it “Autism Epidemic Action Month,” because:
We’re doers ⎯ not do-gooders. There’s a difference. Awareness is no longer enough. It never was.

That’s a fine suggestion, but for now we’re stuck with the observances recognized by mass media.

It all begs the question; why do we need to be more aware? Is there really anyone out there that doesn’t understand there’s a lot of autism out there these days?

But I suppose there is a need for awareness. The world needs to be aware that we are seeing a real epidemic, that it’s not just a matter of better diagnosis. The world needs to be aware that the question of “why” has not been answered, and that we need to get to the truth, or things are going to get worse. The world needs to be aware that the so-called mountain of evidence supposedly leading away from particular causes has disproved nothing.

The world needs to be aware that we take very seriously our responsibilities as parents. Harold L. Doherty, at Facing Autism in New Brunswick addressed that the other day. He confronted those who attack parents for daring to suggest that there may be non-genetic components in causation, and there may be a hope for a better life through the process of cure. In his well-written post, Harold states:
It is parents who represent our children, protect them and advocate for their best interests. We are not advocating for an abstraction, we are not advocating on behalf of “autistics”, whatever is meant by that expression when used by people who claim to be autistic but claim that autistic disorder is not really a medical disorder. Attacks on parents advocating for their children with autism disorders are attacks on autistic children by attacking those who protect and advance their children's interests.

Reading that reminded me of something my friend, Ginger, wrote a few years ago, in response to a comment questioning who we are to undertake the “drastic” step of attempting to cure our children of autism:
Who are we? We are their parents. 



Making choices that will impact who our children will become is the blessing and burden of parenthood. We have to make HUGE choices for our children and we don’t get to find out the final impact and totality of those choices until their lives and personalities completely unfold. 



We are flying with blinders on, with the only view in the rear view mirror and out the side windows, and we can only make the best choices we can make with that information. Every time we make a choice for our children, we unchoose every other possibility for them.

Indeed. Our everyday reality is to constantly weigh potential benefits against known risks, and to inform all of our decisions with love.

On this World Autism Awareness Day, I’m aware that the life of my family has been made infinitely more difficult because of ASD. I’m also aware, however, that ASD has provided the opportunity to be inspired in my life. I am inspired by people like Ginger and Harold, and all of the others I would never have met but for the common struggle. I am inspired by my older children who constantly demonstrate unconditional love and patience for their younger sibling. I am inspired by my wife, who works with a small team of amazing professionals to make my son’s life better. And most of all, I am inspired by the Little Rankster. He isn’t ready to give up; why should I be discouraged.

Be aware. Be very, very aware. Be aware that we are here for our children.

4 Comments:

Blogger Rene said...

Great post, Wade. Thank you.

4/2/09, 10:30 AM  
Blogger K Fuller said...

I have been visiting your site for awhile. Thanks for this post. Maybe Autism awareness is to remind ourselves of how much we do and how far our own children have come.
Very few of us are waiting for the world to solve this problem. As parents we move ahead without them.
It is kind of strange to have an Autism Month,as if it doesn't exist the other 11 months of the year.

4/2/09, 10:54 AM  
Blogger Wade Rankin said...

Oh, the irony that this should fall toward the end of Autism Awareness Month.

http://www.healthfinder.gov/nho/default.aspx

4/2/09, 11:07 AM  
Blogger María Luján said...

Hi Wade
Great Post, thank you.
I speak for my son. As Harold told, I am responsible of my child. Also, I am involved in all the aspects of his life, at all levels. Not someone else, of any age, with the same diagnosis than my son. This responsability has many aspects and many duties:health is one of biggest concern. My son was not healthy and the decisions needed to analyze and to consider were of my responsability . To search for the doctors , to search for the school, to search for the best therapists for his needs.
In that context, it is to me that my son is going to ask for, not someone else. It is to me he is going to question and I am prepared to give him the answers I have.
What I do think I am giving him is the opportunity to question me,to be verbal, to be confortable , to be healthy taking care of his health, his sensorial, emotional and sociological needs until the time- I hope- he may be responsible for them.

4/2/09, 11:36 AM  

Post a Comment

Links to this post:

Create a Link

<< Home