Thursday, February 28, 2013

When autism awareness is a bad thing

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It seems weird to think that autism awareness could be bad. But, I believe in certain situations it can be.

There have been some newsworthy events happening in my community surrounding an autism charity. This organization had a platform of “autism awareness” and had a lot of success at spreading awareness by selling autism-themed trinkets in front of grocery stores.
Being that I’m involved in the nonprofit community, I have known of this organization for a while and our paths have crossed on more than one occasion.

The first time I saw them, I was walking into a Wal-Mart store and I saw their tables out front with all of their autism stuff. With a warm feeling in my heart, I picked up a brochure. After all, they were representing families like mine!
The second time I saw them, there were a few people gathered around the table making donations, and so I stopped to try to learn more. I waited for the crowd to disperse a bit and then started chatting with their representative. When I asked a couple of questions, basic things like what they fund and what their mission was, I kept getting referred back to their brochure and to call their office with my questions.

That put me aback. I thought it was strange that their own people couldn’t speak to the work that they were doing. I politely picked up another brochure and went about my business, making sure to look them up when I got home.
And, I did. Their website was certainly snappy enough. Someone had put some time into the design and it wasn’t merely thrown together. There was content, but I didn’t see a lot of information, and that bothered me. I let it go and forgot about it until another day.

Time passed, and I was working on a nonprofit autism event with some other local nonprofits. The aforementioned autism organization asked to be a vendor at our event. We agreed. At the event, we noticed that they were collecting money and their cash box was stuffed full with donations from the attendees. That rubbed a few of us organizers the wrong way. Here we were, a bunch of nonprofits representing ourselves as autism resources, and they were the only ones seeking money with no real information provided. It just didn’t feel right.  
After some later discussion and research, things started coming into focus. This organization was not who they were cracked up to be. It was merely a front for making money for the founders. Autism was the popular cause they chose.

It has come to light that they didn’t do much of anything to support autism in our area. They were keeping the vast majority of the money they raised for themselves. And, they were under investigation both in Washington and Oregon.
When I learned all of this, I was hurt. I felt duped. I also felt somehow responsible for people giving their money to this organization who attended the event I worked on. That made me angry.

The news was shared and people started paying closer attention. I began hearing stories of my friends notifying management at the stores they shopped at when they saw the organization camped out in front. In fact, on several occasions, they were removed from soliciting at those stores. Little by little, the word was getting out.
It’s all a matter of public record at this point. They have since ceased operations here in Washington, and I’m happy for that.

However, I get a twinge of anger every single time I see one of their bumper stickers on a car. And, that happens almost every day. They were very good at “autism awareness.” That particular brand of awareness feels like a kick in the stomach every time I see their logo on someone’s car in the community. In fact, even today, I had to resist the overwhelming urge to follow a car into a parking lot and try to tell them the truth about their bumper sticker. It almost feels like an obligation since I am an autism parent and also the head of nonprofit who is actually trying to do good for local autism families.  
Lord knows, I haven’t profited from my nonprofit work. It’s all about getting the information out there to where it needs to go, and connecting people with resources they need. Maybe someday I’ll make a livable wage, but I guarantee it will be earned fairly.

In this situation, I feel like autism awareness has created a dark cloud over the community.
Stores are no longer trusting of organizations (understandably), and it’s causing negative effects for others who are legitimate and want to get their story out there. Another organization I know and love comes to mind that has been barred from selling raffle tickets in front of stores, with all proceeds benefiting a major annual autism event. It is a sad thing for them, and it’s sad for all of us autism families that enjoy that event.

A disservice has been done to autism awareness causes in my state, and it’s because of one, very effective, yet short-lived organization. Other organizations are now directly suffering from their actions.
Worse yet, unknowing people are driving around with evidence of fraud plastered to their car’s bumper and they have no idea.

I guess the one thing I learned from this experience is to ALWAYS research people and organizations you give to. Personally, I have researched many organizations, and after learning the truth about how they spend their money, have made the choice to never give to them again.
I’ve found, generally speaking, that larger organizations may not manage their money very well. I am no longer blind to big events and fundraising campaigns that can’t even break even. It’s sickening to think about all of those people walking for all sorts of causes with their matching t-shirts and the sense of doing something bigger than yourself, and then learning that in some cases, none of that money will go toward what you were walking for. In fact, they may have even lost money on the event! Or, in the case of something like a fancy dinner auction, most of the money raised may have been spent on the caterer and auctioneer with only a fraction of a percent going toward anything helpful. Or, maybe it all ends up paying the 6-figure salaries of the organization’s executives. Stuff like that is rampant.

Any way you slice it, I learned that most of the money I was giving away was not going where I wanted it to. And, now that I know that, it’s no longer acceptable to me.
My new way of thinking is that any money I give (beyond what I already donate to my own organization) goes to smaller, grassroots organizations that keep money in their local community. I can see the actual impact of the programs that I support because the money stays here and I get to know the people behind the cause. Now, that is something I can believe in.

I am no longer swayed by slick ads, radio spots, and huge organizations that have a ton of support and name recognition. I seek out places that can deliver tangible change, from person to person. And, for my money, I believe that’s the best way to create awareness of any kind, with a lasting and positive impact.
I encourage you to look around your own community and identify organizations that are doing good work, and if you can, support them with your time and resources. You will feel a deep sense of satisfaction that your actions are truly helping others. Nonprofits, particularly smaller ones, are always looking for people to join ranks and provide a helping hand.

Awareness should always be a good thing. Isn’t that the point? I am now working to ensure that autism awareness in my local area is restored to its good name and works.
Help me be part of the solution by not giving away your resources blindly. Do your best to learn about the work, mission and outcomes of organizations near you. The effect will be great! And, in the case of autism awareness, it can once again be a good thing.                  

6 comments:

Sarah said...

Sad day for Autism Awareness. So sorry that people take advantage of others. Thank you for sharing this.

Andrea said...

I have actually seen them on two occasions at two different stores in the past couple of months...

jillsmo said...

That's an important word of warning. And Guidestar is an excellent resource!

mamaporuski said...

I always check a non-profit out with Guide Star. It lists the IRS filings of all 503c. I used them to research the orphan charities and adoption fundraisers we used. It's quite eye opening to see what the "board" of some of these groups make! But there are just as many good ones out there.
Don't peel the stickers off the cars just yet, be glad to know those people cared enough to stop, get information and publicly advocate for something close to your heart!

help autistic child said...

Even after an autism spectrum disorder is found, individuals can, in many cases learn to be functioning individuals; however, if the disorder is disregarded and nothing is done, then there is a possibility of severe delays in both communication and social skills.

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