Why do I do this? I am a husband and father of an autistic son and his two neurotypical brothers; each of whom provide my wife and me with endless pride and profound joy, each in their own unique ways.  I decided in March this year, as World Autism Awareness Day and Autism Awareness Month approached, that I wanted to write some things down and share them with whoever wanted to read my observations.  I also wanted the opportunity to share some of the many things that I’ve found; things that pique my interest as a parent and an advocate for Autism Awareness. 

autism awareness ribbon

There are many, many tragic stories in the news and on the Internet about children and adults on the Autism Spectrum who have been lost, been disparaged, or forgotten; we all know about these stories for they are countless and unending.  There are, however,  just as many stories of inspiration and encouragement.  These are what interest me more because they speak to the spirit of the person on the Spectrum, as well as those who care for them.  A parent of someone on the Autism Spectrum has experienced many trials and tribulations, as well as a myriad of emotions.  There are days when we all need to be inspired, myself included; whether it is my own son’s story or someone else’s son or daughter. 

I used to participate in Autism Speaks‘ blog/message boards in years past but eventually found that forum to be overwhelming; too many ‘experts’ in their own minds, and too many posts nitpicking and putting others down.  Entirely too toxic an environment that often drowned out many reasoned, civil comments.  So I stopped, and moved onto this blog eventually. 

I get a chance to read others’ blogs when I am on WordPress; at least I try to.  Sometimes my work computer is slow or wonky; state-issued desktops that still run Windows XP that I can’t upgrade.  When I do get to read posts, it reminds me of how lucky my wife and I are, comparatively speaking: Mike is verbal, not on meds, and is making progress.  Though it has not always been this way, it is good to get the perspective of others on another section of the Spectrum.  It also reaffirms my drive to deliver (I hope) news of hope and encouragement, to myself if for no one else. 

I also get absolutely Pavlovian when I get a new ‘follow’ or a ‘like’ to one of my posts: it is wonderful to receive positive affirmation.  There are days when I don’t feel like writing or posting, but when a follow, a like, or a comment is posted, it just gets me going again.  Like autistics, neurotypical people crave communication. 

Am I on the Spectrum? Unlike other autism bloggers, I am not on the Spectrum, although truth be told, there are some social situations that I can relate to on that level.  I do respect many bloggers who are on the Spectrum, especially teens and young adults, because they provide insight into what my son may encounter on his journey. 

I am not a ‘celebrity’ follower per se; I post stories about athletes, actors and other celebrities because they have a venue that I will never have: access to thousands of fans and followers.  They are better equipped to spread awareness than I will ever be.  Their fans on Twitter, Facebook, and other social media literally hang on every word they write.  The autism community applauded Holly Robinson Peete’s open letter to 50 Cent, but when I sent a tweet to her about doing the same to confront Joe Scarborough, that went unanswered.  I suppose we choose our battles, and can only do what we can do; I just feel that those with the opportunity and resources to champion the autism community should do so at every turn.

Why do I do this? I do this because it is my responsibility, it is a calling of sorts.  It is my way of communicating with others about Autism, and hopefully provide some added nourishment to keep fighting for our children.  I do this because it is good for my soul. 

Engage – Enable – Expand – Express – Embrace  are things we should do every day.

We aspire toward Acceptance, Advocacy, Achievement and Excellence.

Thanks for indulging me.  -Ed

About these ads

About beyondautismawareness

We live for the betterment of our children. There is no nobler cause regardless of race, class or title. I am a father of three boys; my youngest Michael, 13, has autism. He is surrounded by family, friends and providers who encourage and support him, none more important than my wife and his two older brothers. I am a Physician Assistant by trade and work with Developmentally Delayed adults residing in a state facility. I wear a blue rubber bracelet on my wrist that says, "Engage - Enable - Expand - Express - Embrace" which has become a mantra for me. I welcome you and invite you on this journey with me as a parent on the Autism Spectrum. I urge you to share you stories and pictures. I am an advocate for Awareness and Empowerment of those affected by Autism. Follow me on Twitter@1andOnlyJustEd and on my Facebook Webpage dedicated to this blog.

5 Responses »

  1. Thank you for being who you are, and for helping people like me seem far less scary to the NT world. I know my son would appreciate you too, if he were able :)

  2. Life and Ink says:

    Ask and you shall receive. Here is a comment to “get you going again.” And you know what, it feels good to me too, because it is nice to lift someone else’s day! Keep writing. I like to think that, together, we can make a difference in the world! :-)

  3. love reading this ….. and yes – keep writing – you help people and parents living with ASD … :P

  4. [...] Official: Holly Robinson Peete Not Returning to the Talk – Molly Shannon Stepping InHaveUHeardWhy Do I Do This? .recentcomments a{display:inline !important;padding:0 [...]

  5. Neil N says:

    All great reasons to blog. Thanks for sharing your story. I too get the Pavlovian response to likes/follows/comments!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Connecting to %s