Tuesday, April 5, 2016

The 1 Thing I Hate Most About Autism Awareness Month


Finally, all [of you] should be of one and the same mind (united in spirit), sympathizing [with one another], loving [each other] as brethren [of one household], compassionate and courteous (tenderhearted and humble).
~ 1 Peter 3:8, AMPC ~


In case you are unaware, April is Autism Awareness Month.  These 30 days are filled with basic facts, pleas to increase acceptance, and celebration of neurodiversity... And blue... LOTS of BLUE.  While I am a firm believer that patient advocacy is a critical voice in the wider community, I must confess that I hate this month.  The reason is largely this:


AUTISM is usually only ONE PART of a WHOLE PERSON.

Before I get bombarded with hate mail, allow me to explain.  

I have a teenage daughter who is a walking smorgasbord of diagnoses, including a school diagnosis of Asperger's Syndrome.  Her combination of sensory processing disorder, "severe" (according to a neuropsychologist) ADHD, and social deficits ushered her to this team diagnosis over a series of several years.  Even so, with the changes that came with DSM-V in 2013, that diagnosis now falls under the diagnosis of Autism Spectrum Disorder.  Her multiple medication allergies have required her to fight through most of the hard work of managing her challenges without the benefit of prescriptions or covered therapies.  

While her complexities and issues related to ASD have been frustrating and exhausting to deal with over the years, they are only part of a larger intricacy that involves all of her diagnoses.  The asthma and allergies she battles have left us in frightening, life-threatening situations more than once.  The ear-nose-throat clinic has come to know us all too well -- We've spent too many hours post-cauterization in attempts to end her relentless nosebleeds.  They helped us through her bleeding and pain complications of tonsil and adenoid surgery as well.  Most recently, we dealt with a painful spinal diagnosis that landed her in a back brace with physical therapy for 8 weeks.  All of these things have been vastly complicated by her Asperger's Syndrome.  How does Autism Awareness Month even begin to capture all of that?

As the saying goes, "If you've met one person with autism, you've met ONE person with autism."  In other words, there is a huge variation in this one part of a much more complex person.  I know so many other families with children who have this diagnosis in addition to several others like seizure disorder, Down Syndrome, hearing impairment, ADHD, bipolar disorder, and cerebral palsy.  Again, Autism Awareness Month only touches on a part of that whole.

Perhaps I have just grown to a point where I feel most comfortable moving within the zone where those of us with kids of every diagnosis are of one mind.  The reason is that although we are diverse, we can offer one another mutual support and compassion.  We are stronger together rather than segregating ourselves into exclusive diagnostic posses. And the autism community has so much to offer people dealing with myriad other challenges.  Maybe Autism Awareness Month just stands out to me because it is the only widely known diagnosis apart from breast cancer that so intensely observes an entire month versus a day.  

Beyond the difficulties, each of our kids that fall somewhere on the autism spectrum represent an impressive set of gifts and talents.  Our daughter is smart as whip.  She obsesses about backpacking and survival skills.  She lights up a room with her quirky effervescence and her love of animals.  Our friends' children that are on the spectrum each possess beautiful traits as well ranging from musical giftedness, to talent with horses, to impressive evangelization abilities, to delightful humor.  Each one of these persons bears the fingerprints of their Maker because they are a unique human, not because they bear the label "autism." 

Yes, autism awareness is important, but this month barely seems to touch the tip of the iceberg.  Providing little to better the lives of those living with this difficult diagnosis, it feels like it has become more of an echo chamber over the years than a tool to advance research or public acceptance.  My hope is that we would refuse to remain inwardly focused on this spectrum of diagnoses, and that we would unite in a wider way to support all who struggle raising a child with any sort of special need, chronic illness, or disability.

PRAY:  Awesome Creator, thank You for being the God of the details.  Thank You for seeing each of us as more than just a single diagnosis.  You have placed Your loving DNA in each of us, as we bear Your image.  Help us to reach beyond our medical labels and love in wider ways.

~ Barb Dittrich

4 comments:

  1. Barb...you've touched on a great point here. One of the challenges friends of mine have encountered in trying to research better treatments for kids like Sophie is that kids with autism spectrum disorders have so many other confounding traits and features that it becomes difficult to identify an homogeneous enough group to get meaningful findings.

    In our practice, we have a saying...if you've seen one kid with autism, you've seen one kid with autism. Thanks for reminding folks of how each kid with a spectrum disorder is unique, and the ways in which their uniqueness overlaps with other special needs.

    ReplyDelete
    Replies
    1. Thanks, Steve! I was concerned that my point would not come across clearly here. You have confirmed what I see in the wider autism community. I never truly knew what the word "comorbidity" meant until I stepped into the world of ASD.

      Delete
  2. Amen!! I love this and agree wholeheartedly!!

    ReplyDelete
  3. My child's last neuro appointment confirmed that most on the spectrum have subsequent diagnoses. So this article is 100% right on accurate. Thank you for making others aware!

    ReplyDelete