The Truth About April and Autism Awareness – My Experience

Autism Awareness Month….The month to share experiences and resources for those living with or hoping to learn more about autism, or the month for those in the autism community to fight over organizations, events, word choices, and a lot of other “stuff?”

I don’t doubt that every fight that is occurring on Facebook pages, Twitter posts, or blog comment sections starts from a genuine place.  Individuals are passionately articulating standpoints that they are incredibly passionate about.  Unfortunately, all of that passion turns into emotional escalations that yield further escalations that end up in a very negative and counterproductive place.  It is a place that those of us who have been in the autism community for a while come to expect during this month or honestly whenever certain “hot topics” are raised.  But I wonder how those new to autism or the special needs world feel when they come across these fights?

SummerComesMarching_Goldardine-FlickrI remember 5 years and 5 months ago when we went into our “results” meeting with the diagnostic team after several days of intensive testing.  Sitting in the waiting room, I recall my stomach being in knots, and at the same time being incredibly optimistic that this meeting would yield a plan that would help us know how to help our son move forward.  We were called into the meeting where we sat down across a table from a row of experts all intently staring down at their stacks of paperwork.  The meeting started with the announcement that “you probably already know this, but your son has autism.”  Then, the current research at that time was shared with us that essentially indicated that if he was going to learn verbal language and related skills that the window of time in which that needed to occur was rapidly decreasing, and that services in our area were basically nonexistent.  Within 10 minutes we were informed that they were running behind schedule and needed to move on to the next family waiting, but that we could give them a call with any questions.  And then the meeting was over.

Looking back (hindsight is a wonderful thing), I realize that we were fortunate—fortunate that we had the research skills to look for interventions, fortunate that we were already living in a special needs world and had experience with making decisions on our own, and fortunate that we had transportation to travel an hour away for services when we finally found them.  In the days, weeks, and months that followed that meeting, though, I just remember being overwhelmed.  I would read one article, get excited by what it was saying, and then read another article that suggested something different.  I was so frustrated not knowing what to do and not fully understanding yet that there wasn’t one answer that was right for every child or every family.

I asked a lot of questions, and fortunately for the most part found outlets that were really supportive of my questions.  I guess I lucked out and found a few groups that could offer differing perspectives and experiences that totally and completely contradicted each other without heated debate.  Those experiences were invaluable to me, and helped me learn so much about this new world we were trying to navigate.  Let me be perfectly clear—at no point in time did I ever expect that these resources could make decisions for our son nor did I want them to.  I did, however, need a place to express concerns, frustrations, and questions that were safe zones—places that wouldn’t judge every word choice that I made or organization that I referenced.

My first Autism Awareness Month was a really big deal to me.  It gave me a chance to connect to a lot of people that I now call friends.  I learned a lot from the experiences that everyone was sharing, although I didn’t always agree with their decisions nor did I always think those methods would work in our family.  There was also something oddly comforting in publicly hearing discussions about the kind of things that we were living every day.

I just can’t help but think that today might look very different for my family if I had encountered the negativity and hostility that I am seeing around the internet today.  Would I have asked the same questions?  Would I have kept researching or simply relied upon the information that was in the packet that we were handed on the way out the door at that meeting?  Would I be comfortable sharing our experiences for others to learn from?  Would I be as public about the struggles we do and don’t’ face?

I guess this is the point where I am supposed to offer some epic or insightful conclusion, but to be honest I don’t have one.  I just wonder if we should stop and think before we post those flaming comments.  Are we really articulating our viewpoint in the most productive way possible?  Are we encouraging further discussion?  Are we creating spaces where those new in their journey feel supported?  1 in 68 is a pretty big deal when your child or loved one has just become the 1.

Jennifer.

Jennifer Butler
Jennifer is the mother of 2 children and more 4 legged furry babies than she (or her husband) cares to count. Both of her children have primary immune deficiencies and her son is also on the autism spectrum. Jennifer is a full time Organizational Communication professor whose research focuses on work family balancing. Jennifer spends her spare time rescuing animals and advocating for her special needs children. She does this by focusing much of her energy on service dogs for children and being a school board member at her children’s school. You may contact her on Facebook, on Twitter, or at her blog, Caden's Tale.
Jennifer Butler
Jennifer Butler

4 Responses to The Truth About April and Autism Awareness – My Experience

  1. You are so right. I think that people feel free to say anything on the internet — without utilizing ANY social skills. You pointed out that your first in person meeting was critical. I think most of us that have children diagnosed any time ago met people first in person (usually through schools or organizations like the one you described) and were able to sound some things out. I feel sorry for people who have to (or choose to) rely on social media, blogs and celebrities to get their initial information.

    • Julie–Thank you for reading and commenting on my blog. Connections are so important for information, support, and some days sanity. I certainly have met some great people via social media and find a lot of support from them but that takes awhile. I worry that others might not find that support when there is so much negativity being posted right now.

      • I too have found lots of support and friends online but if that is your only source, I agree with you that all the negativity could easily be overwhelming. I just get tired of negative people in general. I was raised with the old “If you can’t say something nice, don’t say anything” motto and frankly, sometimes I wish more people would take it to heart! :-) Happy Easter if you celebrate that.

  2. I don’t know about you… but I am starting to HATE April!! I keep saying when a child has cancer, no matter what kind of cancer parents of other kids with cancer as supportive, end of discussion.. Not the case in the autism world, not at all. It’s super hard for me sitting at each end, if I say something positive about one or the other I am wrong. If I say something is harder I am wrong again. Fact is no matter what end you are on, it’s different, it’s hard and it takes finding what works. May, come on May, ready for things to settle down a lot.

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