Butterfly grew up with food intolerances and was diagnosed with ADHD, Asperger's
Syndrome, and learning difficulties. Now she struggles with OCDs.
This is the story of how we have faced these challenges.

Sunday, March 27, 2011

April is Autism Awareness Month...

...and already the big fray has begun! Fray? Oh yeah. I guess it’s inevitable. Here come the arguments about how to raise awareness or whether, indeed, mere awareness is enough. Do we go gently into this, or do we pound our fists and demand attention?

Oy.

Um, here’s the thing. People. You know, as in one of my fave remarks: “People, what a species.” Yeah. People. Right.

Most of these two-legged critters are roaming around out there quite unaware of anything at all. They are just going through the motions of life, doing the same things day after day, taking comfort in the familiar ~ that repeated pattern of daily routine. They aren’t aware of the guy next to them at all, never mind if said guy has some disability. They aren’t aware of why they’re here, the importance of what they do day in and day out ~ or the lack of its importance. Most are just about getting enough money to live. They wake up with their double-doubles to barely function through the day, then they dull the pain of having to do something they hate to get that money by numbing themselves at their local tavern/racetrack/casino, or slouched in front of the tv... or whatever.

Awareness?

Many of these people say they’re this religion or that, but never meet with others of like faith or study what their beliefs are about. They never educate themselves about what their own religion even is. They really only know what it’s called and that it was what mom and dad believed and what most of the people around them supposedly are. They think all other religions are bad. Not just different. Bad. But they don’t really know anything about those religions either. Polls were done by reliable sources. They came to the conclusion that many Christians, for instance, know very little about their own religion, much less that Jesus is an oft mentioned prophet in the Koran, the writings of another faith.


Awareness? We have an obesity epidemic in North America right now, with all the health problems that entails, such as heart disease, cancers, diabetes, etc. There are all kinds of theories about this, but mostly it’s happening because of over-processed, over-refined foods in our homes, and too many visits to easy, convenient, cheap, fast-food joints where the “meat” may or may not be meat, the chicken nuggets are nuggets of fat, indeed, all the animal products have been raised on farm “factories” where the animals are raised inhumanely on hormones and antibiotics that then enter us via what we eat... Hmmm, lemme see: fat, hormones, antibiotics, processed, bleach and other chemicals, and we call it food? And many won’t stop eating this way until they are too sick or too fat to sleep-walk through their day as usual.


Awareness?? Last week I spoke to a registered nurse about my daughter’s OCDs. We talked a little about behaviour, both Butterfly’s and other people’s... you know, those who lack awareness. When Butterfly wouldn’t talk to her on the phone and wanted her to talk with me instead, the woman asked if she was always like that. I said, “yes, she’s Aspie.” Now, this woman is someone who screens potential patients for a local psychiatrist, but she needed more explanation about how most Aspies would react to the social pressure of talking to a stranger on the phone. I had to explain how Aspies “react” to many social situations, because she was surprised that Butterfly couldn’t figure things out instantly and respond accordingly. Um... if she could do that, she wouldn’t be Aspie, would she? So I raised the RN’s awareness. I explained things because someone screening people with social disabilities ought to know at least a little something about them.

Awareness?

Even some people in the autism community respected for writing about their experiences with autism come out with things like, “negativity is a one-way street” because they apparently aren’t into the reality of the ying/yang of all things. One can ignore the negativity if they can’t handle it, but that doesn’t mean it isn’t there. There are pros and cons to all things, and acknowledging the negative is the first step in dealing with it. There is always a balance, and finding it is key. There are no philosophical one-way streets, only one-way minds.


Awareness? Some people think settling for just awareness isn’t enough. They want understanding and acceptance too. It’s a nice thought, and ultimately a great goal. But it’s only wise to walk before we try to run. Seems to me that inspiring awareness in the medical community is a good first step; in the community is the second step. If you plant that seed in your own back yard and nurture it, you will have accomplished more than demanding that others do things your way. When the medical workers in your community become aware, when the clerk in the store gets it, when your neighbour is aware, then you’ve done something, because once they’re aware, that’s where acceptance and understanding begins. Yes, there will be negative experiences. Don’t ignore them; speak of them, without anger if possible. This will raise awareness.

Yes, awareness.

I know, some people think instant gratification takes too long. But being impatient, disagreeable and unpleasant won't get us there faster. Just as insulting people who’ve had a different experience by telling them they didn’t, won't change their story. They will only be insulted. Does that accomplish something? (Respect cuts both ways. You’re going to get back just what you give.) Every journey begins with a single step, every road has obstacles, and everyone carries a burden. Persistence, patience, tenacity... that’s what gets the thing done. Struggle for awareness. When you have that, nurture it into something more, when you can. The seed always grows into a healthy, leafy plant if it gets what it needs. But healthy growth takes time, care and patience.

Awareness alone is a tall order in this world of half-conscious, sleep-walking, poorly-nourished, follow-the-crowd, full-of-ourselves human beings. But we can get there if we keep going and if we help and respect each other. We’re all just people after all.

And you know ~ people, what a species.

6 comments:

  1. Good to meet you today on Twitter and pleased I've found your interesting blog. I had a comment on today's post about raising awareness, which is from a regular reader of mine, saying she felt it was normal that people didn't know about autism because they didn't need to know - not in those words but that was how I interpreted it. I understood totally what she was saying, but I also pointed out that this is the whole reason why "awareness" needs to be raised. NO ONE knows whether it will affect them in future years. If they are like me, not maternal, didn't plan to have a child, to one day find out they are the mother of a disabled child is such a shock. I talk often about my daughter on my blog and have received some great responses and a lot of support. We definitely need to stick together with this issue because it really won't go away.

    Many thanks for RT'ing my tweet today, too.
    Best wishes, CJ xx

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  2. Yep... awareness is difficult for anything if it doesn't touch people personally. When it does, it suddenly seems so urgent.. and it is! Just frustrates me sometimes, because it's like the time I offered someone the recipe for liver-cleansing tea, but she changed the subject because she was bored. Less than a year later, her daughter died of Cirrhosis. Even when it's important.... *sigh* Makes me feel a little like screaming, but I know it won't help. Yes... let's work together and keep at it. :) The more we put out there, the more awareness we'll raise.

    Wen <3

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  3. Hello, I've found your blog via twitter so thought I would come along and say hello. I really enjoyed reading your post which I found very thoughtful and agreed with a lot of what you say. I think when we find ourselves in the positions we are in caring and nurturing autistic people, we can be so shocked by the lack of awareness that we can feel an urgency to change things. However, as you suggest that journey has to start with spreading awareness of which I am very glad to be part of. Best wishes.

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  4. Thanks MumFA. Yep, you know, the more we support each other, the stronger we become. And the stronger we are, the more people will become aware. :)

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  5. Wendy, when I come here, I always feel peace. This post is so sadly true about how people wander aimlessly and purposeless through life most of the time, looking for money to get by. I'm no different or more special than any of those people because I did that for years. Even after my son was born, I knew nothing that would make me aware of autism. And so it came as quite a shock when my pediatrician finally said that I should have my son evaluated. Then, just as in your post, I had that sense of urgency and became his advocate and now, I want to work to spread that awareness so people understand what it's all about.

    I think your advice about providing awareness at your very local level is a worthwhile road to travel and with each step, you can broaden someone's horizon. It's a shame that parents have to educate the medical community. It should be the other way around but I see the need to do it so often and, like you, even with those who are supposed to know and understand.

    You have a way of stating things that makes them seem so simple but yet they are things that I don't always think about. Thanks Wendy. I love coming here. :)

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  6. Thanks Karen. I'm so glad my posts are helpful to you. That's why I share. :)

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