Autism Awareness Month – April 2012

April is Autism Awareness month.  Amongst friends and family it is something very close to home but not something I choose to talk about publicly very often.  I am not ashamed or embarrassed that Autism and related conditions affect my family, but it is personal and as it affects a child I would feel uncomfortable divulging to the world in depth details that may make things even more difficult as they make their way in life.  This is my personal choice, however I wanted to mark Autism Awareness month by highlighting the difficulties faced by families. 

It is important to spread the word and raise awareness and understanding to help make society more inclusive.  Autism affects around 1 in 100 people in the United Kingdom alone and around one third  of these people and their families are left without adequate support.

It is difficult to explain to people who have little or no experience of the condition but I was given this to read by a close friend and it explains the emotions and difficulties perfectly.  

Welcome to Holland – Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It’s like this….

When you are going to have a baby, it’s like planning a fabulous vacation trip – to Italy.  You buy a bunch of guidebooks and make your wonderful plans.  The Coliseum, the Michaelangelo David, the gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, “Welcome to Holland”.

“Holland?!” you say, “What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy”.

But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.

So you must go out and buy a new guidebook.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It’s slower paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there.  And for the rest of your life you will say, “Yes, that’s where I was supposed to go.  That’s what I had planned”.

The pain of that will never, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

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