Monday, May 20, 2013

Teaming up with We Know…Stuff!

Have you read the blog We Know…Stuff? It’s absolutely fantastic. It’s family friendly and full of scads of tips, recipes, kid friendly crafting, and gorgeous images that are worth a second look. It is run by two amazing sisters, Denine and Daniele, that are down to earth and the real deal. And if you know me, you know that being true to who you are is incredibly important. They've asked me to be a Guest Voice there, and I am honored. Each month, I will be contributing an article addressed to families with Special Needs.

Head on over, check out a few articles, and say, “Hello!” Tell them I sent you, too! If you like what you see, sign up for the RSS feed, and follow them on Facebook or Twitter. 


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.


Monday, February 11, 2013

The Girl with the Golden Shoes

She has an amazing spirit, and I wish I could remember her name. She lit up when she talked about playing her music, agreeing the stage helps build confidence. I’ll forever remember her face, as my mind takes literal snapshots of life’s experiences.

Yes, I, too, think in pictures.

It was a humbling conversation. I’d just finished talking on stage to a packed room of moms, dads, educators and others about raising a daughter on the autism spectrum, with my husband by my side at times. A daunting task, as 90 minutes can hardly scratch the surface just as an entire month can hardly explain even one woman!

Anyone who can do that will win a Nobel Prize in…pretty much every category.

But in 90 short minutes we sparked a conversation that needs to gain momentum.

Part of what I chose to talk about was the girls who fly under the radar, often misdiagnosed or undiagnosed with Autism Spectrum Disorder. Story after story I continue to receive from those on the spectrum, themselves, tells us we need to do better. Too many fall through the cracks, living so much of life not knowing why they don’t quite “fit”. It’s been said these special young women have a higher rate of suicide than the general population - a stat I’m chasing and vowing to expose.

Saturday’s task was a daunting one, knowing that others in the crowd are living the very life I was talking about. And others were walking different paths with altogether different issues, hungering for answers, too.

“Girls are often bullied without knowing it in the moment, as they cannot read social cues,” I related, “but one day they will know. They will understand.” Such difficult words to speak, as I’ve watched my very own daughter walk this path.

The girl with the golden shoes admitted to me this happened to her, too. For years, her autism made her blind to bullying from her peers, as well as identifying friendships. But she is doing better now. Autism, does, indeed, grow up.

I’m not an emotional person by nature, but recalling our conversation brings me near tears. To provide voice for these girls is what it’s all about.

To the girl with the golden shoes, I say, “Thank you!” You remind me why I do what I do. And I am truly humbled. And there is, indeed, a lot of work to do.

Wednesday, February 6, 2013

Myth Busting Weekend Ahead!

Hi everyone! Are you looking forward to this weekend? I surely am! As you know, I am honored to be speaking on Saturday at the Annual Conference of the Autism Society of North Carolina. The entire weekend is devoted to "Autism Grows Up!" Woot! Yes it does, doesn't it?

Who else will be there?

Peter Gerhardt, Ed. D.
John Thomas, M.Ed.
Leica Anzaldo and Louise Southern
Linda Gund Anderson and Brent Anderson

I can't wait to listen to everyone who will be presenting. There is always so much to learn, isn't there?

What will I be speaking about? Glad you asked! We'll talk about raising a girl on the autism spectrum - and we'll be busting some myths along the way!

Are you coming? I hope to see you there! Can't make it? The next series of posts will cover some of the themes we'll be touching on this weekend. you have any myths you'd like to bust about autism! Post them in the comments below!


Tuesday, February 5, 2013

5 Tips for Autism on a Budget

Do you live in the States? Did you open up your paycheck yet? Ouch!

So many had no idea there would be less to take home this year. Even if you did, for many families, the 2% increase in SS tax (or lapse of the "discount") is painful. If you have a special needs child, chances are it's even harder. For many families, we're talking a loss of $100 or so per month. Add to that rising copays ($70 per visit for many); it's an added stress, finding many at a loss as to what to do to make ends meet.

Are you looking for some ideas? Let’s get started with 5 tips!

1.       Drop the cable. Ok, I can hear screams all the way to my house on this one! Seriously, folks, how much does that bill cost? Multiply that by 12 and you’ll see how much it really is. (Yes, I do realize in some parts of the country, cable is not optional. But add-ons surely are.)
2.       Forget the Fast Food. More screaming? I know, with schedules all over the map, eating out can be a time saver. But eating in can be just as quick and easy, and cost a lot less. A can of refried beans, salsa, tortillas, cheese and a bag of shredded lettuce – and we have dinner for a family of four for under $10! (And chances are you’ll have leftover cheese for another meal or two. Bonus!)
3.       Take-Home Therapy. Are there techniques your therapist can teach you that will allow you to do some interim therapy at home? Worth a chance to ask!
4.       Choose Quality over Quantity. It’s better to spend a little more on one or two good quality pairs of shoes, jeans, etc., than have a closet full of trendy ones that will wear out before the season is over with.
5.       Have a Family Night at Home. Choose one night a week for family time. Board games, movies – whatever your family enjoys dong together. Throw in homemade pizza or subs for a meal, too! Not only will you save on movie or game tickets, gas and more, but you will build a foundation that will outlast any financial storms. You’ll be building lasting, positive memories and bonds that will last a lifetime!

Do you have any tips to share?

Wednesday, January 9, 2013

I Need Your Voice

I need your voice.

Last month, you were so kind to read, RT and share my blog, and this month I'd like to hear from you! In February, I am honored to be speaking at the Autism Society of North Carolina's annual conference in Charlotte, NC. The weekend theme is, "Autism Grows Up", and I will be speaking mainly on girls on the autism spectrum.

I need your voice.

True, I have years of knowledge and experience to share, but I've found the sounds that resonate most deeply are the ones that come from those whose voices rarely have a platform to be heard. I'd be honored to share your experiences and address your questions during my talk.

Are you in?

Here's what I'm looking for:
  1. If you are a female on the autism spectrum, I'd be honored to hear:
    1. you feel your experience is different from guys.
    2. having autism/Asperger's makes you amazing!
    3. thing you'd like others to understand about having autism. (This is a great opportunity to clear up myths and misunderstandings.)
  2. If you are a parent or sibling, I'd love the same as above.
  3. If you are an educator, I'd love to hear:
    1. tip that will help parents have a positive relationship with the school.
    2. misunderstanding many parents have regarding the school.
    3. question you would like addressed about autism and girls.
What I need from you:
  1. If you want your name included - tell me - otherwise all quotes will be anonymous - as well as your (rough) age, and age of diagnosis (if applicable).
  2. Understand that due to time constraints I am unable to address all questions or quote everyone, but will do my best.
  3. Due to time, I may need to paraphrase stories. 
How to contact me? Easy!:
  1. Post your comment below (and make a note of PRIVATE if you do not want it published.)
  2. Email me directly.
  3. Tweet me!
  4. Post on Facebook to either:
    1. Asperger's in Pink's page or...
    2. My author page. (This page is relatively new, and you are welcome to "like" and share!)
Are you in? Will you lend me your voice to share with the world?


You are more than welcome to share this blog with anyone!