How we can fix Autism Awareness

 

 

This is the follow up to Why Autism Awareness is broken post. Please be sure to read that post first before moving on to this one. 

“How can we as members of the Autism community ever expect the world to understand when we can’t even be on the same page ourselves. We preach to the world that every Autistic child is different and that’s very true. However, these words become empty if we fail to apply them within our own Autism community. As parents we make the mistake of generalizing things much the same way our kids do.

We generalize our experience with Autism and its impact on the family and transpose that across the board. In other words, we assume that other peoples experience mirrors that of our own. That’s a very dangerous and damaging assumption……. If we are making that mistake how can we expect the rest of the world to be any different?”

—-Problems with Autism Awareness (pt1)

How can we fix Autism Awareness?

I think the solution is much simpler then one might think. However, while it may be simple, it won’t be easy. It will require us to be honest with both ourselves and others in ways that we may be uncomfortable with at first because we aren’t used to sharing our lives in this manner.That said, if we aren’t honest about our experiences, then how can we possibly expect the rest of the world to understand what Autism can really be like and how it can really impact our children and families.

My personal approach to Autism Awareness is to share our story, sometimes in a brutally honest fashion. It wasn’t easy to do at first. We had spent a great deal of time hiding just how difficult things were because we knew that the truth was overwhelming to the people in our lives.

It’s often overwhelming, uncomfortable and even depressing to read but at the same time,  it’s the truth and my family lives it EVERY SINGLE DAY. I realized that if I continued to hide the truth or “sugar coat” the challenges, struggles and heartache we were experiencing with Autism, I would be doing a disservice to both my family and those around us.

All I ever accomplished by hiding the truth or not being honest about our struggles, was to give people the wrong impression of what we’re going through. How could anyone ever understand just how challenging life is for some of my kids or even just how challenging things are for us, as their special needs parents, if I wasn’t honest about it.

Let’s be honest with ourselves about Autism

Let’s be honest with ourselves for just a minute here. There is absolutely nothing wrong with trying to remain positive in the face of everything Autism brings to the table. However, the truth of the matter is that all the happy thoughts and positive attitude in the world won’t make my kids any less Autistic or their lives or our lives for that matter, any less challenging.

While we are being honest here, sugar coating the truth, or trying to hide the challenges my wife and I face together, as special needs parents, won’t make them any easier. In fact it only serves to complicate matters and promote a feeling of isolation because no one would know what we were going through. Does that make sense?

As members of the Autism Community, we must be honest with ourselves and each other. Admitting that we are frustrated, overwhelmed, beaten down, terrified, demoralized or just “Lost and Tired“,  as a result of our Autistic child’s behavior doesn’t make us bad parents. It certainly does not mean that our children are bad or we don’t love them. It’s simply an unpleasant truth….it’s also the reality of the situation.

In fact,  I would go so far as to argue, that being honest with ourselves and everyone else, shows just how just much we actually do love our children and demonstrates great courage and a steadfast determination to making the world a better place for our kids. Being honest about our experiences not only helps to educate the public by showing the world that everyone’s experience with Autism is profoundly dynamic but it serves as a reminder to the Autism community itself that Autism is different for every person and every family and that is all to often overlooked.

By sharing our experiences openly, honestly and emotionally we are showing the world what Autism actually is by letting the world view it through our eyes and witness the many ways it actually impacts our families (both good and bad).

The goal of Autism Awareness

I think the goal of Autism Awareness should be to help the public become Autism Aware by presenting Autism in a “non-clinical” fashion and in a relatable way.

Honestly, anyone can read the facts about Autism in a book or online. However, accurate and multifaceted first hand accounts are few and far between. In my opinion, when we share our inner most personal thoughts, fears, hopes, experiences, joy and heartbreak, we allow someone to step into our shoes and relate to situation, even if only for a moment.  That moment, brief as it may be, is so critical to our goal of spreading effective Autism Awareness.

The one thing we all have (as human beings) in common is a love and devotion for our children. This is something that binds all of us together on the most basic of levels. Think of it like this, when you hear about something tragic happening to someones child, you can’t help but put yourself in their shoes and think something along the lines of “I can’t even imagine what I would do if that happened to [insert your child’s name here]“.

Maybe it only lasts a few moments but in those brief moments an emotional connection was made and you could relate and empathize with that person’s pain, even though they may be a complete stranger to you otherwise.

What’s truly amazing about us, as human beings, is our ability to relate to and empathize with a complete stranger when a child is involved. Sharing our stories in a way that helps people to relate is so important to spreading Autism Awareness. In that brief moment when an emotional connection is made the seeds of Awareness are planted. We can then help those seeds naturally take root and grow by continuing to share our stories and nurturing that emotional connection.

Autism Awareness that grows under these conditions is Awareness in it’s purest and most effective form.  With this type of Autism Awareness growing and spreading across the world, perhaps our children can avoid the cruelty that I witnessed and documented in My Broken Heart, a post from earlier this year

How can you help Autism Awareness?

The current approach to Autism Awareness is broken and misguided. The general approach to Autism Awareness currently, is very “clinical” and lacking a personal connection. It sometimes even feels forced on people. Not only do I not agree with this approach but it’s clearly not working.

It’s basic human nature to reject or resist things that we perceive as being forced upon us. Nobody wants to told what to think, do or feel. If Autism Awareness is to take root and spread we must keep that in mind.

I’m sure we have all heard the saying “you can lead a horse to water but you can’t make it drink“. I think the same principle applies here as well.  We can shove all the clinical information and static Autism facts we want down peoples throats but we can’t force them care. Autism by it’s very nature, is profoundly dynamic. Currently, many people, including those within the Autism community itself, are failing to recognize that very basic, yet elusive fact.

By being honest with ourselves first and foremost,  we are taking a huge step towards making things better. Only after we are honest with ourselves, can we effectively openly, honestly and emotionally share our stories and experiences with the world.  Doing so, while not necessarily easy, can and will help people to become Autism Aware in a way that can naturally take root and grow.

This is my pledge to Autism Awareness…My Reality Autism…

This is my Reality Autism statement. What will yours be?

I’m sorry if reading about my life makes you uncomfortable.  However,  my purpose is to educate people about Autism and it’s impact on, at least my family.

I know it’s often times depressing and difficult to read. With that said,  I ask that you remember just one thing.  You are only reading about it. In the end,  you can walk away and return to your life. I on the other hand,  along with my family, live this every single day with no exception. This is my reality.

Hear this. I will no longer pretend things are okay or sugar coat the truth simply to make you more comfortable with my life.

If it bothers you that much then simply don’t read it.  I will not compromise the purpose or mission of this blog or my message, simply because you are uncomfortable with my truth.

I would love to help you share your story. Contact me if your interested in sharing your story here. 

Join the Cause and Pledge to share your stories. Show the world what Autism is through your eyes. 

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Heather McCracken

I have to say I completely agree and that is why I have spent the last 18 years of my life helping children/adults understand what it feels like to have autism. Hundreds of thousands of children have been demystified. Autism demystification goes far beyond awareness helping children and adults to feel it, not to hear or read or listen to another parent tell there heart warming or heart stopping story. Empathy is the answer and true empathy begins when you can truly related to someone else's experience. What better way to empathize then to "feel it".
Great post!

Lost_and_Tired

Thank you so much for your support. 🙂

Michael

Here is how we are going to try to get more people talking about autism and raising awareness. Could you please take a moment to read up on our new product that we are launching this spring to help "Light It Up Blue" for Autism Awareness. If you like our goal and/or product would you please "Like" us on Facebook and share this on your wall or with friends.
__________________________________
Light It Up Blue
The Cooler Way to Help This Summer

Most Americans recognize that all those pink little ribbons you see everywhere represent breast cancer awareness. Many have not yet even heard of the Autism awareness campaign “Light It Up Blue” that occurs each April 2nd. One entrepreneurial group is trying to change this since autism is such a pervasive and growing issue in our society.
The inventors of the ICE Block Cooler™, designed their product to “Light It Up Blue” in honor of their six year old son’s journey towards beating autism. For years the high financial and emotional cost of treating autism held them back, until one day they were backed into a corner and the high cost enabled them to embrace a risk to improve their lives and hopefully the lives of others suffering through this condition.
The ICE Block Cooler™ team is hoping that the cool and trendy crowd will embrace their product and help bring it to life. The ICE Block Cooler™ is a cooler design that fits in your freezer or fridge and features a cool blue glow when the power is turned on. It is filled with a thermal freezing gel that is sealed into the body of the cooler. Place any common beverage into the cooler and it will lightly grip the container and keep cold in. They have listed their project on a website called FundaGeek which allows people to contribute to projects and then get a kickback of the product once it is made.
Their goal was to design a profitable product that could help carry this message to the masses. In order to do this they needed to create a product that would both light it blue and that people would actually want to own. The inventors said “Once we stumbled upon the combination of a clear plastic cooler and blue LED lights, we knew we had the perfect product for our cause.” They hope that this product will become this summer’s trendy product and work its way into many American households. Then with a bit of luck at some later date the purchaser will either look at the bottom of their ICE Block Cooler™ and see the autism logo imprint, or view an article about why the product was created and realize that they too can be a part of “Light it up Blue”. The expectation is that the social nature of this product will help spread this message to a large portion of the population. They anticipate that the cooler will get people talking about their experiences and through the sharing of information it will help advance the autism community.
In the near future they hope to create a “Help Block (your cause)” campaign and get this product directly into fund raisers hands at a reduced cost. This way fund raisers can sell them directly and keep all the retail profits for their cause.

Check out this cool cause at http://www.IceBlockCooler.com or http://www.fundageek.com

@mamabegood

Hi, Rob! I liked reading your post "Why Autism Awareness is Broken" – you describe the differences in your sons that are affected differently by autism – And loved your message about generalizing from the specific to everyone else – so true. Here's what I like reading about on other parents' blogs: just the stories, like you talk about, what's happening in their lives with their children and what they're going through. I find support, reality, hopes, and connections. Thanks for sharing.

Rachel

I very much appreciate your posts on this issue. It's something I've been speaking to as well — the importance of not generalizing from the specific, because doing so gets in the way of hearing the variety and complexity of our stories.

In your efforts to reach out to the autism community, please do not forget to advocate for autistic people to tell our stories and be listened to with respect. I understand that you come to this issue as an autism parent, so your posts are directed to other parents. But autistic adults are part of this community, too and often, our voices are excluded from the conversation. For instance, in the recent Babble.com list of top 25 Autism Blogs (of which yours was one — congrats!), there was no category for autistic adults. It's very painful to encounter these kinds of omissions, and I hope that in your advocacy efforts, you'll speak to those omissions as well. After all, your boys will one day be adults who deserve to have their voices heard.

Anyway, great stuff here, and I hope people will take your message to heart.
My recent post That’s Your Cue

Lost_and_Tired

Rachel,

Thank you for sharing that. I appreciate your support. The only reason I focus on things from a parents perspective is that's what I know. I don't presume to know enough about Autistic adults to be able to speak to that, if that makes sense.

As far as the top 25 blogs goes, your right and that's something we should work to correct. Your also right in stating that my kids will be adults some day.

Do you have any advice on how to go about including Autistic Adults as well. I guess I have felt that speaking for them could be deemed offensive or taking the wrong way and that's not what I want to do. Right now my focus has been on what my family is personally dealing with as that is something I'm comfortable speaking about.

I'm very open to widening my focus and I could use some advice. Thank you for your honesty and your support. 🙂

Rachel

Thanks so much for your supportive response. I didn't mean to imply that you should speak for autistic people. I feel very strongly, as you do, that people should speak openly and honestly to what they know, and not speak for the experiences of others.

In my comment, I was mainly responding to the fact that your pieces on fixing autism awareness seem to be addressed only to parents, and seems to talk only about getting more parents to speak in their own voices. I'm glad you're doing that; the message bears repeating, early and often. But I think it's also fine to address these kinds of posts to autistic people and to let your readers know that you value all of our experiences. Personally, I wouldn't consider that to be speaking for me. In fact, whenever I hear a parent talk about including us and seeing the world from our perspectives, I feel that we're making progress toward the goal of true autism awareness.

If you have the time, you might also consider soliciting guest posts from adults with autism; on my blog, I've been soliciting guest posts from parents of children with severe disabilities in order to widen my own perspective and that of my readers. But that might take too much of the focus away from what you really want to talk about — your own experiences with your family — and since I'm not in the business of telling people how to run their blogs, I offer it simply as a suggestion. 🙂
My recent post Empathy and My Son with Asperger’s

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