Wednesday, April 7, 2010

The Self-Advocacy Conundrum

Having autism, in many ways, means you need to learn how to stick up for yourself. You need to learn how to politely but firmly articulate your needs. No one else knows your particular needs, so you have to be the one expressing them. Communication helps prevent meltdowns. It is much better to express a need, even if it's not a popular one, and even if you feel embarassed, then to have a screaming or crying meltdown (or worse).

This message was brought home to me last weekend when I was shopping at Whole Foods, as I do every week. I was in the 5 items or less express lane, which is the most narrow check out line. It is bordered on one side by the information/manager's desk, so it is a tight squeeze. There were a lot of people there.

That alone I could have dealt with, but right in the middle of a normally routine transaction, the check-out woman pulled out a bottle of hand sanitizer and sprayed it on herself. A wave of panic rolled over me. I have chemical sensitivities, as well as major anxiety issues over chemical products. There are few things I hate more than hand sanitizers, with their slew of toxic chemicals contaminating the air and making me feel ill.

Now, of course, this was a natural food store, and a natural hand sanitizer, but still, the idea of it freaked me out. I didn't know what was in it - just because it was more natural didn't mean it was necessarily 100% safe - so I had to assume it was dangerous. And I wanted to get out of there.

First, though, I had to complete the cash back transaction I had started. I normally know how to do this, but my brain was frazzled now, and I couldn't figure it out. I looked at the screen frantically, trying to remember what button to push. Unable to figure it out, I asked the woman behind the counter what I should do.

Instead of verbally telling me, she leaned over the counter to show me, until she was practically in my face. My previously controlled low level panic turned into full blown "Alert! Alert! Imminent meltdown! Loss of control in 1, 2, 3...."

I do not like having people that close to me in normal circumstances, but ten seconds ago she had just sprayed the hand sanitizer on her, and now she was right next to me. This triggers all kinds of alarms in me. My brain went into panic mode. It was the worst thing she could have done - but of course she didn't know that. She didn't know and couldn't have known how much her hand sanitizer would bother me. I certainly don't fault her for that.

But still, I had to do something. You know how people say sometimes they can see their life pass before them when they're in a life or death situation? In this case, I could see clearly that I was headed for a meltdown if I didn't alleviate this situation in the next two seconds. Not quite life or death, but same general concept.

(This is novel for me, as usually I'm either in a situation with an annoying level of sensory overstimulation but not an overload or meltdown-producing one, or I go from annoying to overload and meltdown so fast that I didn't see it coming and couldn't have possibly stopped it if I wanted to. It just goes over the top and everything falls apart.)

So I said the first thing that came to mind. I said firmly and urgently, but politely, to the check-out lady, "You need to move away from me."

It worked, and the situation was diffused (and I apologized afterwards), but I couldn't help filling a little bit guilty. I've been thinking about it for days, in fact. I can't help but wish I had inserted a "Please" in there. "Please move away from me" would have sounded so much nicer. I don't like the fact that I basically issued a direct order to her and treated her a bit like a kid. But on the other hand, it was what came to mind and at least it was polite. And it was far better than a meltdown.

It got me thinking, though. I've read a lot about autism self advocacy and I suppose this is just one of many such adjustments we have to make to live in the neurotypical world. We can't be so concerned with going along with the crowd, or worrying about what other people will think of us, that we ignore our needs and ignite a situation that will potentially harm us or others.

Parents of kids with autism have to do an awful lot of advocating for their kids. They learn pretty quickly to put personal feelings of shame, embarassment or self-consciousness on the back burner in order to care for their kids.
I read a lot of autism blogs, and have regularly followed seven or eight of them for some time.

When I think about examples where parents have overcome personal obstacles to better advocate for their kids, in small or large ways, I think about Michelle O'Neil of Full Soul Ahead, who got over a life-long fear of singing in public to help out her daughter Riley during a church event. I think of Jess of Diary of a Mom, whose work on the Inclusion Committee of her school helps build a better environment for her autistic daughter, Brooke, to thrive in. I think of how carefully she plans and approaches communications with other parents in an effort to get them to understand Brooke better. Or "Mom Not Otherwise Specified," who just wrote a stunning series of posts, which should be published in a book some day, about going into her son Bud's classroom to talk to his class about what autism is.

Knowing how to advocate for your kid means knowing when to push and how far. Tanya at Teen Autism demonstrates this art with her eloquent letter writing to the her son's school to improve the level of his services and try to stop some bullying that was going on.

No one has approached the topic of self-advocacy better than Rachel at Journeys with Autism, though. Having discovered her Asperger's diagnosis at mid-life, hers has been a constant struggle of trying to figure out where she fits. It has been a painful struggle of trying to figure what accomodations she can reasonably ask the world to make for her so she can better access it, what instances she can try to override her own needs in order to appear more "socially acceptable," and in what cases she needs (or feels she needs) to simply drop out of the game. So many of her struggles mirror my own, but in different ways.

When to ask for accomodations and when not to? It's a valid question. For some people, there is little question to it. The adjustments they need due to sensory and anxiety issues are very real and reasonable in the situation. Still, when a person just wants to "be like everyone else," it can be hard to swallow your pride - both as a mom and as a person with ASD - and ask for them. There is no doubt that it can be embarassing; but embarassment is in the eye of the beholder, and is an emotion one gets over sooner or later if they want to be at all effective in the world.

The thing about autism and Asperger's is that everything about you *is* different. If you try to hide it, you'll only be doing yourself a disservice; it won't stay hidden and will come out in ways you might not like. It's better to accept it - accept that you will come accross differently to people, accept that people might find you weird, accept that you are occasionally going to have to ask for little things to be done differently for you - but accept it with a smile on your face. If you have to be different, do it cheerfully, that's what I say. Smile at people. Hopefully, the spirit of your true personality will come through, and people won't be so caught up in who's "different" and who's not.

And that means that self-advocacy will stop seeming like such a big deal and just become a normal part of who you are, something you don't think twice about. I think that's a day we'd all like to see.

This also goes for your kids. Be proud of who they are instead of ashamed. They learn a lot about how to feel about themselves and how to interact with others from you. They can pick up your feelings about them. (This is not directed at anyone in particular, certainly not any of the blogs I mentioned above; it is just a general message to parents of special needs kids.)

Self-advocacy: a little communication makes the world go around.


  1. I was gripped by the check out story, and you did a great job of explaining why self-advocacy is important and the different issues associated with it, what it means to stick up for oneself in the face of social pressures not to, for the rest of the article. Very well done.

  2. ME TOO! I was also gripped by the story, you conveyed to us as readers the situation, the issues, your needs and your fight for control. I wouldn't worry about the 'please' in moments of panic an economy of words does best. You need to congratulate yourself on what happened and how you dealt with it. Thanks for letting me know about this post, I'm going to direct our self advocacy team from work here ...

  3. I think your choice of words was perfect. You don't need to worry about "please" when you're about to panic. I probably would have just melted down. I'm not very good at communication... I tend to communicate by melting. I should work on that.

  4. What a wonderful and informative post!

    I love how you advocated for yourself. I will be a happy mama when Riley is able to take care of herself that way. I am honored to be included in the examples above.

    You and those like you, experiencing autism firsthand are so brave. Thank you for sharing your experience here.

  5. Brava! Thank you for articulating so clearly a confusing situation at the check out, which I think you handled very well. I've often thought that whenever I go out I should just wear a t-shirt that says, "Stay behind the white line!"

  6. Wendy Posey SongyApril 9, 2010 at 7:22 AM

    Wonderful job expressing how you and many of us feel about things. Hearing what goes on inside your head and how you deal with things is so helpful to us - Our son just turned 9 but acts about 5 or 6 when he's not saying something wise or funny that makes him sound 40!lol Just found your blog today - so thankful we found you!!!

  7. Thank you Wendy, Susan, Dave, Lydia and Michele! I appreciate your comments. Dave has a great blog that you should all check out and I appreciate him coming here! Wendy, I am glad yo meet you too and hope you stick around! Where did you find me out of curiousity?

  8. The others have great blogs too I didn't mean to single anyone out. I've just always been a big fan of his blog.

  9. I wish I'd had direct, first person experience like this to read when my son was younger. Fantastic blog piece!