Autism Awareness Month

Here it is, for the third year: my annual autism awareness month blog post.

This will probably be regarded as heresy to many in the autism community, but there are days that go by when I don't think about autism. This wasn't always the case; in the years right after diagnosis, I thought about it all the time.  Now, the fact that I'm the parent of a teen on the spectrum is simply part of the mosaic of my life.  Some days I'm preoccupied with work issues, some days I'm hyper-focused on the Teenager graduating from high school, some days I'm prioritizing adulting issues like getting the income tax paperwork organized or getting bids on exterior residential painting.

Autism is unique in the sense that it's a different experience for everyone, so you can't take one person's experience and make that representative of everyone. For example, I've lost count of the number of times people have asked me if the Son of Never Stops Eating talks, because they "know someone who has a kid with autism and he doesn't speak".

Oh, yeah, he talks.  Does he ever.  At the age of three, he didn't talk, except for a few words- and then after a few years of speech therapy, the time came when I found myself pulling off the interstate during a road trip to tell both offspring that they were bickering too much and that we were going to play a fun game called the "Quiet Contest" in which we would see who could be quiet the longest.

I've also lost track of how many times I've been asked about the following: vaccinations, Jenny McCarthy, Andrew Wakefield, essential oil therapy, chelation, trying herbal supplements, whether or not I think autism and gut issues are related, my thoughts on the organization Autism Speaks, the movie "Rain Man", what my son's "special ability" is (memorizing every episode of The Simpsons, apparently), if I take a lawyer to my son's ARD meetings, what I think about private school vouchers, and if I know that God gave me a special child because I'm a special mother (and its corollary: I'm not to worry because God will provide).  Sometimes when I answer these questions, it's followed up with "but I have a friend with an autistic child and she says something different". Yes, she probably does.  See a few paragraphs above.

Now that he's in high school, and obviously growing up (6'3 and still going) people are asking me what he'll do as an adult.  Where will he live, what kind of work will he do, how much adulting do I think he'll be able to manage on his own.   I'm still not entirely sure of the answers.  Quite a bit of it depends on him.  His dream arrangement at the moment seems to be an apartment in which he has his own Lego creations studio, his housekeeping is magically done by his parents, and he owns a hamster store. Well, when I was his age I wanted to marry Simon LeBon of Duran Duran and be a lead singer in a famous band (despite the irrefutable fact that I cannot actually sing), so who am I to judge?

Quite a bit of it also depends on external resources, which are thin and stretched.  Many months ago, several people sent me a link to an "adults with autism private pay development" being built near us.  It had every feature of luxury living you could possibly imagine and had the low monthly cost of $4500. I am definitely not the Mom of Endless Financial Resources At My Disposal, so this will not be happening.

I roll my eyes when I hear politicians talk about "family values" or being "pro-life".  We've sat on state services waiting lists since 2009, just like thousands of other families.  The process of ensuring that your special needs loved one will have his or her needs met as long as they live is complicated, frustrating, and fraught with peril (and lots of paperwork).  One mistake, and your cause is lost.  If people wanted to do one thing to help my son, it would be this: vote for candidates who legitimately care about disability issues.  Whether or not autism itself is a disability can be a controversial subject, but the issues of employment, transportation, access to safe and affordable housing, the ability to participate in community life, and medical care are practical matters that will be important to my son as he enters early adulthood.

As he gets older, I see my parenting role shifting for him, just like it is for the Teenager.  When he was younger and I was new to the diagnosis, I wanted to "fix" it.  Then I moved into acceptance.  Now, my job is to help him become his own best advocate for what he needs and to ensure he has the practical skills for where he wants to go with his life, which includes laundry because his parents are definitely NOT doing that forever.

Yesterday, I asked the Son of Never Stops Eating if he thought he could manage having a debit card.  I explained what it was, and that he'd have to be careful not to lose it and that if you tried to buy something that you didn't have money for, the purchase would be declined.

So if I only have $20 and I try to buy the Simpsons Lego set for $200 the store will say no? he asked me.

You got it, I told him.  He thought about it for a minute and then said yes, I think I can do it.

I think he can, too.