World Autism Awareness Day with Ben Royko

I was trying to think of what I wanted to say about autism on this Autism Awareness weekend. But then Facebook helped me out and just showed me what I wrote three years ago. So instead of finding another way to say it, here is what I said in 2014 and what I would say today anyway. And WARNING!!! This is severe autism. Please, try not to be offended if you view autism as simply a difference and not a disabling disorder. We are very aware that others do not experience autism the same way, or regard it in the same way. We certainly respect your position and experience. We hope you can respect ours.

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World Autism Awareness Day 2014

Sometimes Im struck by the irony that most of our world has become very, very aware of autism, except, from what we can tell, Ben himself. Or the thousands like Ben, with severe autism. Actually, we really dont know Bens level of awareness of his different-ness, but every speck of behavioral evidence tells us he is, fortunately or unfortunately, clueless when it comes to autism, his own or in general. Maybe were wrong, which is even more disturbing like an ALS sufferer locked inside themselves with no way to communicate their thoughts.

Nineteen years ago when Ben was diagnosed, we were all about the cure. We were members of Cure Autism Now (and how optimistic that name seems nineteen years later), which some years later merged with Autism Speaks. We co-hosted a fund-raising golf-and-auction event, compulsively searched the relatively new internet for scraps of hope for this grinding, devastating disorder, tried various types of interventions, and even a crackpot cure or two (anybody remember Secretin?). It wasnt all for squat. Without the umpteen services and therapies he did receive, Ben would probably be in much worse shape. We love, truly, those who have helped him and those who tried even without any visible sign of success.

But here we are, with Ben approaching his 21st birthday, and while its better these days that Bens autism doesnt require much explanation anymore, wed be much happier if Cure Autism Now had succeeded.

But, of course, it hasnt, not yet.

And for us, were afraid that that horse has already bolted from the blazing barn. We wouldnt join an organization these days named Cure Autism Now even if thats what we want. The organization we need at this point is Prepare and Provide for Severely Autistic Adults Now.

From what we can tell, Ben is not an unhappy young man. It can take a lot to keep him happy, but being busy with purposeful activities, jobs and tasks is one of the essential ways. His happiness depends on it.

But the world is not ready to keep Ben and his cohorts engaged. Its a big job. We know that. Every parent and every family and every service provider and every therapist who has worked with Ben knows that. This is a mountainous climb into an immense new world of services. It will does require a ton of work, dedication, providers, and resources (AKA money).

In a perfect world, we could look at this huge need and say, It will be taken care of. They will be taken care of.

In a perfect world, Karen and I could leave this world not terrified of what Bens final years will be like.

In a perfect world, of course, there would be no severe autism in the first place.

But in our world, the work is just beginning.

Autism Awareness is a big step on a staircase where the top has yet to even become visible.

And for our kids, we continue to climb. We always will.

David and Karen Royko, Bens parents

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Blog: The Chronicles of Ben Royko: Severe Autism in Real Time

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