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Welcome to my 5th Annual World Autism Awareness Day Diary!

April 2nd, as you might have guessed from my title, is World Autism Awareness Day.  You might notice people around you wearing a little more light blue than you are used to seeing, although Spring has sprung in some parts of the country, so the baby blue could just be in response to warmer weather.

More likely, though, is that more and more of you are directly affected by Autism Spectrum Disorder, or someone you know is.

I write a bit about autism here at Daily Kos, mostly because my almost thirteen year old daughter has severe autism and I tend to think about her and autism in general more than is normal or healthy, but I love my girl and want her to be as healthy and happy as she can possibly be.

Here are my former World Autism Awareness diaries, if you are interested:

World Autism Awareness diary 2009
World Autism Awareness diary 2010
World Autism Awareness diary 2011
World Autism Awareness diary 2012

I also have a website about my daughter, who is a gifted artist.  Some of her work is displayed there, and there is also a blog I write about life with autism in the house.  Here's a link if you're interested:

EllieCastellanos.com

For your enjoyment, here's one of her latest creations:

Enough of that!  Onto the diary!

Living with a child on the spectrum, and living on the spectrum itself, is living in a parallel universe to the rest of humanity.

Your autism, or your child's autism, have to be taken into consideration 24 hours a day.  Where can we eat?  Who can we have over?  How will we get to school?  What activities can we do?

These questions aren't unique to autistic people, of course, everyone has to answer these questions.  I suppose it's the answers that separate out the parallel universes.

As an example, I'll take eating out and activities.  My Ellie actually loves to eat out and has a healthy and varied appetite, thank goodness, knock wood.  What she doesn't like are waiting for a table and small children.

We avoid small children like the plague, no offense to any small children out there.  They tend to be noisy, unpredictable, and they cry a lot.  Ellie does NOT enjoy their company.  So, do we huddle up inside our house and never venture forth?  No.  We adapt.  We like to eat out at odd, off hours.  Most places are pretty empty at 2:30 in the afternoon, which is perfect for us.  We eat at virtually any restaurant we like, just never at dinner time.

As to activities, Ellie's needs have to be taken into consideration.  There a few activities that she loves and are easy to accomplish.  She loves to swim, we do that a lot.  Texas has some of the most gorgeous swimming in the US, I might venture.  So we spend a lot of time at swimming holes and rivers and we virtually live at Barton Springs in the summer.  As I mentioned before, she likes to eat out, so we do that from time to time as well.

We love road trips.  We love to camp.  Ellie does not love these things per se.  We don't let it stop us.  Ellie does love being in the car, and she loves tents.  So we hit the road or pitch the tent, and we let Ellie be herself.  We don't make her get out of the car and wander around Fort Davis National Historic Site in Texas (amazing) or visit the old town hall in Lincoln County, NM where Billy the Kid shot a sheriff and made a legendary escape (also really cool).  We let her stay in the car, happily drawing on her ipad.  Some might think that, "She's going to have to learn to live in the real world at some point, so you should practice getting her out of the car or tent and into society."  I might think that you sound just like the administrators at Ellie's school and isn't that tiresome, but of course I acknowledge the point.  I'm a big fan of baby steps.  We'll get there, we just take our time.  Plus, you need to remember that there is a whole family here, not just Ellie.  We need vacations.  Desperately.  So we find ways that we can all enjoy ourselves.

We also took this road trip in December, which is not a peak road trip time.  It was pretty great, because we had most of our stops all to ourselves, and Ellie barely had to face a single toddler.

What does this mean to families dealing with autism, and how does all this blathering relate to the diary title?

It means that while we manage to make the best of things and have a pretty good time as a family, we suffer from a lot of social isolation, most of it self imposed of necessity.  When we meet families with cool parents but small children, my husband and I tend to make subtle eye contact and we know we won't be hanging out with them much.

My daughter has always wanted to have a sleepover party for her birthday.  I don't know if you've ever seen more than three ten year old girls in a confined space but it tends to get very loud.  It can't happen in this house, at least not while Ellie is in it.  

Explaining to people for the umpteenth time who Ellie is, what's going on, yes, she's ok, or no, I don't know why she's upset gets very tiring after a while.  As we both get older, I tend to make the effort less.  That leads to social isolation, and I know I'm not the only one out there.

I don't say all this to complain, really.  As I said we generally make the best of things and we're lucky to have a tight family unit that don't mind doing things together, but I know that there are a lot of people out there affected by autism and that most of them suffer from social isolation.

Is there an answer?  That's a tough one.  One answer I've found for myself is joining my local SEPAC (Special Education Parent Advisory Committee).  These are some of the most dedicated parents I've ever met, and it's a great combination of support group, educational venue and action group.  If there is one in your district I recommend going to join it tout suite.  

If you're thinking to yourself, "There's a family in the neighborhood with an autistic kid and they tend to keep to themselves a lot, is there anything I can do?", I don't have a great answer for you.  Maybe people in the comments can toss out a few ideas, but I might just say be friendly when you see them, and ask how their kid is doing even if you don't see them much.

And please don't assume that if you don't see the kid much they are locked in a basement all day.  Ellie is kind of selectively agoraphobic and doesn't like spending time in the neighborhood, but she gets out plenty.  As I said, we just have to pick our times and places carefully.

So, on this World Autism Awareness Day, make sure on your way to get the mail to give an enthusiastic hello to that woman in the neighborhood with an autistic child.  She might be a little taken aback or wonder why this strange guy is shouting hello to her in such an enthusiastic way, but if you keep at it you might be doing your part to chip away at her social isolation.

I kid.  Social isolation for anyone with disabilities is a serious issue.  Be kind.  Look out for your neighbors.  If you feel up to it, make overtures of friendship.

And fight like hell for Medicare and educational budgets in your area.

Happy World Autism Awareness Day, everyone!

Originally posted to coquiero on Tue Apr 02, 2013 at 07:49 AM PDT.

Also republished by Parenting on the Autism Spectrum, KosAbility, and Community Spotlight.

Poll

I know someone who is affected by autism in the following ways:

24%25 votes
3%4 votes
6%7 votes
20%21 votes
2%3 votes
6%7 votes
1%2 votes
15%16 votes
15%16 votes

| 101 votes | Vote | Results

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