Welcome Back, Year Four!!

Well Hello there and Welcome Back!!  We are starting our fourth year together – thank you for coming back!  We had a little face-lift over here in honor of our fourth year.  We were a little overdue.  We’ve had a busy, wonderful year, and with our fingers firmly crossed, we are looking forward to another year of good gains.  I have only a few updates this year, but I’m excited to share them with you.

As for today, it’s officially Autism Awareness Day and as I consider this annual blog, I struggle with perceptions and opinions about what this day means, and what it does for those challenged with Autism.  Several articles recently published by parents of kids living with autism report that they cringe as Autism Awareness day arrives each year.  I am not one of those parents.  Still I find their articles compelling and support their intention, if not their message.  To that end, I would like to highlight what I think Autism Awareness Day is and is not. 

It is not a time to ‘celebrate’.  I do not feel that turning on a blue light or wearing a blue shirt or writing this blog in any way celebrates autism.  Do I celebrate my son?  Hell yes.  Do I celebrate his achievements and his tremendous effort?  All day, yes.  But the autism part?  No, I do not celebrate that.  I hate that.  I detest every tiny thing about autism.  I resent that it makes even the simplest of tasks monumentally difficult for Coleman.  I cry over what this awful condition has robbed him of.  I do not celebrate autism.  Not this day, not this month, not ever. 

It is not a time to share only feel good stories.    The senior with autism getting asked to the prom;  the high functioning Aspie who overcame his challenges and is graduating at the top of his class, the autistic middle schooler who started a social group for other special needs tweens.  These are all wonderful, important stories that we need to hear.  But it’s not only what we need to hear.   Autism is complicated and encompasses much more than these stories.  And it’s important that the wider population understand the less pretty side of autism. 

“At the opposite end of the autism spectrum, parents are diapering their teenagers. Distressed children are literally banging their heads against walls. Parents are cleaning feces from furniture, carpet, and fingernails daily. Families are trying to function despite extreme sleep deprivation. Hyper-vigilant parents are turning their backs for a second and losing their beloved children to drowning.”¹

It is not a time to push the dogma of acceptance so hard that we quietly shame families into silence.  Calling autism neuro diversity is like calling cancer immune diversity.  I will not accept Coleman’s autism as personality trait.  Acceptance in terms of understanding both the strengths and weakness of this population, and finding creative ways to make them active members of their communities is, I think, what is hoped for with Autism Awareness and Acceptance.    But to stall the conversation of cause, hope and cure, to silence the discussion on successful recoveries from autism, depicting them as untrue and unfounded, to ask parents to acknowledge defeat quietly and gracefully accept autism for what it is?  No, this is not the acceptance we are talking about.  

“For seven years, we’ve dealt with days consumed with endless crying, for months at a time. With intense emotional and psychological pain that no human could fix because this was “just autism.” With intrusive repetitive thoughts that controlled every waking moment, making us prisoners in our own home and my son a prisoner in his own brain. With crushing anxiety that prevented anyone from coming to our house, and anyone from leaving. With diarrhea. Followed by constipation. With food allergies. With insomnia. With refusal to eat. With an immunodeficiency. With month after month of traumatizing IVs to treat it. With five straight years where nobody slept through the night. With rages. With holes in the drywall and rooms torn apart over transgressions as small as grandma purchasing a blue pool noodle instead of green.  With tears. With so many tears.  For seven years, we’ve been drowning. And since autism is synonymous with all things good, acceptable, and neurodiverse in this world, and since all kids with autism are simply wired differently, and since doctors who say otherwise are quacks, and since parents who think otherwise are in denial or worse, we’ve been forced to remain silent about our pain and our reality.” ² 

So as I write this blog and as I share stories of our own trials and tribulations, please know that I don’t accept or celebrate Coleman’s autism.  I celebrate my son.  Not the autism.  And when we Light It Up Blue this month, know we don’t do it as a nod to ‘acceptance’ - quite the opposite in fact.  We Light It Up Blue to remind the world that we are fighting autism every hour of every single day and that we will not give up and accept it.  Not today. Not tomorrow. Not ever. 

1   “Let’s Start Honoring People with Autism by Stopping the Celebration of Autism”, by Ashlyn Washington, The Huffington Post, 3/29/2017

 2. “My Son’s Autism was caused by Autoimmune Encephalitis and no, I wont accept it”, Walking in Quicksand.com, Sept 2016