Friday, March 22, 2013

Autism Rates and the Stock Market



The latest news has social media outlets abuzz. The numbers have changed, again. In less than eight years, we’ve seen them more than triple. Experts discuss the reasons behind the change while so many watch and wait for the numbers to shift, yet again. In this business, digits are followed with great anticipation and endless postgame analysis. Some sign on, catching the freshest wave, while others join in, hoping to cash out a little before the wave crests and falls.

What I’m about to say will be seen as controversial to many, and maddening to some. And I’d bet the house, if I was a betting lass, that a few will misconstrue what I aim to communicate, as we all come to our own conclusions, bringing our built-in biases and backgrounds. I suppose it’s blog with a dash of a rant, and I welcome your comments below.

The stock market affects each and every one of us, whether we are personally vested in it or not.

Those with autism are becoming merged with the stock market mentality. And I can’t stand it.

When my daughter was diagnosed with Asperger’s (soon to be folded under “Autism Spectrum Disorder” – Asperger’s isn’t going anywhere. It’s just a name change.), watching the rates transform from 1:166 to 1:115 to 1:88 – and now to (purportedly) 1:50, has been incredible. Personally speaking, I still do not think the numbers are correct. For one, girls continue to be misdiagnosed or undiagnosed during the school years, which means many are not counted in the latest data. Add to that how the data was collected, and I sit here scratching my head a bit. But this post isn’t about that, at all. It’s about the numbers game.

Like many of you, I’m on Facebook, Twitter and Pinterest. I’ve seen so many talk about the rates while sounding the alarm bells and it has me concerned. It’s almost like watching the stock market: Can we remain above 14,000? What if we dip back under 10K again? What if we truly are on an investment bubble and it all comes tumbling down? Instead, we’re watching the autism “market”: What if rates keep increasing? What if it becomes 1:40? Or 1:25? What on earth will we do?

And, like watching and fretting about the stock market, many ask, “How do we stop the ‘worst’ from happening?” Some join the conversation as it appears the “in” thing to do while others ask, “How do I cash out?”

I’m not liking that vibe, folks.

Let’s be clear, autism is a spectrum. It is incredibly broad and diverse, and those of us who live and breathe it every day have the mantra, “If you’ve met one person with autism, you’ve met one person with autism” furrowed in our brows. Yes, there are so very many beautiful souls with communication and self-care difficulties who could truly benefit from something that will enable them to live independently. But there are so many others who do, indeed, move on to marry, have families, and hold down incredibly powerful careers. In fact, another mantra privately uttered by so many on the “Aspergian end” of the spectrum is often, “I don’t suffer from autism. I suffer from those around me who refuse to take time to understand me or accept me for who I am.”

Share if you like!

Let’s break it down.

About that “fix,” stopping the “worst case scenario”. Imagine being a teen. Remember those years? Even with the best of experiences, moodiness rules the day. It is what it is. Imagine being a teenager on the autism spectrum and reading all the news, hearing how others see you as having a “problem” and needing to be “fixed,” with the added “concern” that more and more people are becoming like you. How would it make you feel?

I know how it makes my daughter feel. It makes her fight for her self-worth. It makes her want to burrow her Asperger’s as far into the ground as she can, living under cover so she can move about her life “undetected”. And this rush to rage against the numbers is hurting so many like my daughter who want to be accepted for who they are. Not who the majority wishes they be.

Please, stop the rage. Turn it into passion for understanding and sourcing therapies that will be of benefit. Turn those powerful emotions into making a positive impact.

And about those who “buy in” to the cause of the day? Let’s face it; autism is, regrettably, seen as a “fad” for many unaffected by it. Unfortunately, this does mean some will be diagnosed who should not be. But it also means many will wear the ribbons and walk the …well…walks, but ten years from now they’ll move on to the next cause. It’s fickle. And is how some operate.

Please, don’t “buy stock” in autism because “everyone else is doing it”. Do it because you believe in it. Just as you would buy stock in a company you have faith in. Otherwise, you’re “buying in” for either a simple return on investment or to say, “I have a share in ‘Autism Co.’. Do you?” Those of use connected to autism are ambassadors, whether we wish to be or not. It’s part of the package. We’d love you to be fully vested with us, but serious buyers, only, please.

And now a word to those who see green. There are two sides to this coin.

Unfortunately, there are those who may see this as an opportunity to “cash in”. Wow, does this one bother me so! No, I am hardly naming names. But there may be a few who want to ride this wave. Autism is not a penny stock. This is not a Bull Market. It’s a way of life for oh so many of us. Make your money somewhere else.

On the other hand, there are those who are resentful when others do make even a dime from their advocacy work. Please know that most people who work to create autism awareness and acceptance do it with a passion to truly make a difference. Yes, some will financially profit (books and speeches do take quite a bit of time and resources to write and promote; therapists and teachers, as well as those who craft awareness items, need to pay the mortgage, just like the rest of us), but most will not be motivated by money at all. (Remember my introverted husband next to me on stage? He did it due to his passion for Asperger’s – not attention. He’s more comfortable behind a keyboard than a microphone, for sure!)

Please, let’s stop seeking out the latest numbers on autism as if we are watching market trends. Autism is not the stock market. Autism defines the lives of so very many people. If the numbers concern you, consider using that energy to work for understanding and acceptance of what autism is – and what it is not.

And, I’ve gotta say to my fellow autism peeps; let’s use this energy to understand each other, as well. In the autism “family” (we are a family, folks, to invoke the sentiments of my friend David from the Autism Society of NC), we need to work to understand the opposite side of the spectrum on which we are standing. But ‘tis a topic for another time.

Somehow I can’t help but feel this blog carries more negative energy than positive, and I regret that. But sometimes it is important to point out trends, and I hope this will spur you onward to (re)focusing on autism awareness and acceptance. Instead of ranting and raving about the numbers, let’s see what we can do to support those who have autism, as well as to educate others who do not understand our beautifully deep and diverse spectrum.

~peace

1 comment:

  1. Thanks for writing this thoughtful piece, Julie. I too feel like we're all part of the same family. I hadn't been aware of how volatile recent in-fighting was, until the recent survey results were posted.

    I have found recent interactions on social media just so incredibly sad. It's hard to for any of us to truly focus on acceptance when we're being so unaccepting of others ourselves. Imagining any child (or adult) feeling "less" as a result of any post/article is horrible, to say the least.

    The name-calling (and this has happened on all sides) in the name of acceptance likely triggered many of us, in different ways. Remembering that many of us are not made of thick skin is vital, I think. Some of us have ASD. Some of us have other differences that also make us vulnerable. Anyway, I found your thoughts lovely. Thank you.

    ReplyDelete