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Thursday, May 10, 2012

"Welcome to Holland" and autism

If you have anything to do with the special needs community, you have probably been given the "Welcome to Holland" story by some well-meaning person. On the off chance you don't know what I'm talking about, click here.

Usually, when I mention that story, I preface it with "stupid"---the stupid Holland story. I read it over this morning, and that is probably unfair. It's a very well done analogy, for some situations. I just don't think it applies well to autism.

Part of that is that you don't find out with autism right away that you aren't in Italy. You are handed a baby who in most cases seems perfect. It's like you are actually in Holland, but in some Disney type imitation of Italy. You THINK you are in Italy, you start seeing the sights of Italy, and gradually, you realize you're not actually in the real Italy. By that time, you've already made all kinds of Italy plans, restaurants and sights and sounds you are going to see.

The other part is that I feel autism isn't another country. It's not an alternative life. It's the same life, with something taken away. Here, I am talking about lower functioning autism, as Janey has. I know with high functioning autism or Aspergers, there are many people who live wonderful lives---lives outside the mainstream, but very happy and meaningful lives. But I can't help but feel in Janey's case, autism has taken away what she was meant to have. There are wonderful things about Janey, but I think she would have those traits without the autism. She would still be musical, but she might be headed to a career in music. She would still be quirky, but able to explore the varied ideas and thoughts her quirkiness lead her to. Autism hasn't taken us to a different but equal country. It's taken away. I can't accept that a life where Janey cries for hours because she can't explain what is bothering her, where she will most likely never experience the joys of love and marriage and a family, where everything will always be a struggle, is just a different but equal vacation in Holland.

Yes, our personal mis-booked vacation has lead us to meet some wonderful people. It's opened my eyes to a world I wouldn't otherwise have found. But all in all, I find the Holland story as applied to autism to be paternalistic and condescending. It's above all a story about a parent's viewpoint. From Janey's viewpoint, I'm pretty sure if she could say, she'd want to go to Italy if that is where she was booked to go. She'd want the life that most of us take for granted.

1 comment:

Tori B. said...

I don't know if you have ever heard the "Welcome to Walmart" analogy It fits autism better than the Holland story. After all the Holland story is technically written about Down Syndrome.