Monday, 10 May 2010

Is Autism a Gift?


This topic was recently debated on a TV show.

The stereotype of Rainman persists and it is often, wrongly, thought that all autistic people are geniuses.

It is true that the existence of savants or geniuses is five times higher in the autistic population than in the general populus but stands at only 5% of the total autistic population.

So, 95% of autistic people are not geniuses.

So is autism a gift?

The panelists, who had no direct experience of autism, all had tales to tell about people they knew who very laudably 'wouldn't change their autistic children for the world'.

This is very easy for them to say!

The poem 'Welcome to Holland' was read out:


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're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo 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 a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. 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....and 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."

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


c.1987 by Emily Perl Kingsley


I think the parents of autistic kids that I know might say it's more like Welcome to Beirut!

Rebranding autism as a gift is nifty get-out clause: It is carte blanche to ignore the very real plight of families living with autism as they have been blessed with a 'special gift'.

Those parents who called into the show or were in the audience were unaninimous in arguing that they felt autism definitely isn't a gift.

Why not?

Anybody who has read my blog will understand that autism is a tricky path both for the person living with autism and their family.

The precise reason we say this is because we love our children deeply, but is impossible not to feel their pain and living with autism is relentlessly tough.

I have spent whole days sobbing, thinking Why Us?

If somebody offered Lyla a magic wand that would take away the autism, I would give it to her like a shot.

She came home today and cried for 2 hours because her classroom at school had been rearranged, without warning.

She was massively anxious that she'd lost her place in the classroom and was no longer a member of the class.

Lyla is a very precious gift: if I could take away this pain, I would.

Wouldn't you?

9 comments:

  1. I agree totally! Even though I love Button for who he is, autism and all, I wish that he could experience life in all it's beauty, without being afraid of hand-dryers or crowded places. my only consolation is that he isn't aware of his differences, and is for the most part a happy soul. Saying autism is a gift is, as you say, a get-out clause. It's bloody hard work!

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  2. I agree, I would too. I love my son absolutely and dearly just as he is, but yes, if there was a magic pill he could take I would do whatever it took to get it into him, for his sake, not for mine. My son isn't as old as Layla or Button so I haven't even begun to experience some of what you have, I try not to think about it for now.

    Congrats on being a MAD finalist btw, was delighted to see you there :)Will be rooting for you.

    Jen

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  3. I was really interested to read your post, and related comments. I have to say I absolutely agree. I really liked the poem you posted, and I remember reading it when my son was first diagnosed; it struck a chord with me. Funnily enough though, my husband was aghast and didn't like it at all. My son is a gift, autism, in many ways, is not. Good luck to you!

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  4. Taz- it's interesting isn't it that we all share such similar experiences! We definitely need more help :)

    Jen- thanks for your support as always :)...I had a dream the other night that a cure had been invented- you never know!.....Can't believe I made it to the final of the MADS...shall be boring everyone soon with the obligatory post on it!! ;)

    Maxxiee- Hi :)Thanks for reading, welcome aboard!- I remember liking that poem more initially like you, but now I find it a bit patronising: yes, our kids are wonderful, but it ain't a walk in the park!!

    Rachel xxx

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  5. ah, lovie, what can I say? I know just how tough it is and have to practice hard at staying positive and on top. Guilt and worry free, and refrain from jumping on a plane out wherever that might take me, but away from Beirut!!!

    I see G as a gift, but a strange one that I don't understand and sometimes I get just too tired to continue to be understanding . . .and then my behaviour gets misunderstood by him! It is tough, but I understand so much more about him and others around me that have probably got it but have never been diagnosed (adults).

    Sometimes I do wonder what it is all for, and believe me if I could campaign for something it would be far more support. To raise any child, and then another on top another one with an ASD, then to teach all that needs teaching and to look after a house, and work to earn enough to keep the roof over my head all alone sometimes just gets a tad overwhelming :0

    But we soldier on and it's great to know you and to share and have support - don't know what I would do without.

    PS your art is coming on soooooo well and is lovely!!

    Maybe all autistic parents should do art to combat the hardships. Had a particularly tough day yesterday (with one that wasn't even autistic) and I felt if I didn't take up some sort of form of rythmic crocheting or embroidering I'm going to go stark raving!!!

    Lots of love,

    Amelia.xx

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  6. hello Rachel

    Thank you for you comment on justtesting. Congratulations on being a MADS finalist. Well deserved!

    My friend, Dave, wrote a fine blog post on his sister and autism here: http://abarrelroll.blogspot.com/2009/10/on-autism-joys-of-jenny.html which I think might interest you.

    (My alltime favourite book is The Rachel Papers by the way)

    bye for now, kim

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  7. I do know where you're coming from, however, I have never mourned the fact that Amy is autistic. She is who she is and I could never ask or want for anything more. I have wanted to scream, many times, but only because I am inexperienced on how to deal with her issues. They are my difficulties, not hers.

    A wonderful post, highlighting the beauty that is autism.

    CJ xx

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  8. I have autism and honestly I wouldn't want to be any other way. Autism is just a unique way of looking at the world, but it's not a curse. Just let your daughter be herself and don't try to change her. It's good when she makes progress, but on bad days don't blame autism for ruining your families lives. Remember everyone has special skills she just has to find hers.

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