Autism and Parent Narratives: Why Words Matter

There are hierarchies of communication that determine the impact of the words.  What someone says verbally is less enduring than what they write.  What someone says in a casual conversation is less significant than what they say in a public speech.  What we say to an acquaintance is less meaningful than what we say to our child.  This hierarchy is why a verbal agreement is not as binding as a written agreement.  It's why people choose their words more carefully for a speech than for water cooler conversation.  It's why we plan well ahead how we'll tell our children about sex, religion, politics, or death. 

When a father, the sports editor I talked about here, wrote about what it meant to parent an autistic child, he understood this hierarchy.  He knows, as a journalist better than anyone, that the newspaper is a public arena.  And he understands, as we all should, that once your written word is out in the public arena, it's public.  It's open to debate.  You have put the subject up for discussion.

You cannot say this dad's words are off limits and cannot be discussed, anymore than you can say my words here on this blog are off limits.  A writer puts his words in the public arena, knowing that the subject will be volleyed around.  Some people will agree with the author.  Some will disagree.

As a journalist, the father is also aware of how the public arena informs our individual and collective thoughts about a subject.  If we repeat a statement often enough, people accept it as fact.  Our statements in the public arena about autism are not made in a vacuum.  They are not separate opinions and ideas, floating individually around the atmosphere.  They attract to each other and stick together, forming masses.  The sheer volume and repetition of specific themes turn these masses into a "truth," a given that is no longer questioned. 

So common themes are something we must be aware of.  They're easy to pick out by reading any article about autism.  Grief, loss, stress, financial burden, struggle, lost dreams, and violence dominate the conversation.  The combined effect of this message sends strong messages.  The public knows only about the negative side of autism and parenting autistics.  Parents new to autism learn quickly the emotions and subjects that are acceptable within the autism community.  Community members who stray from these themes do so at risk of rejection. 

Why is that?  Some members object to any commentary about a parent's narrative about what it means to parent an autistic child.  But when a parent makes statements in the public arena, to the media, on the internet, in a speech or a book, they are not simply venting and asking for support.  They are affecting other people's lives.

And who are the most vulnerable people in the autism community?  The ones with little voice or no voice?  With the least time on the public stage so far?  The ones who will be most affected by these messages?  Autistic individuals, adults and children.  They are the ones who bear the brunt of our collective discourse.

The volume and frequency of negative messages about autism paves the path that autistic adults and children must walk.  Our messages as parents tell others (teachers, employers, providers, etc.) how they should feel about our children.  Our public discourse tells the public (store clerks, strangers, bus drivers, etc.) how to feel about autistics.  It tells autistics how they should feel about themselves.  

A pebble dropped into the water sends out ripples far and wide.   Those ripples cannot be undone.  Would you want to face your own child and tell him one of those messages?  That he'll be better in heaven?  That you wish he was normal?    Because of the dominance of these negative messages about autism, someone will say it to him.  He'll read those words one day (or now).  He'll hear those words one day (or now).  He'll understand the messages.  And here's what he'll hear about himself:  grief, loss, stress, financial burden, struggle, lost dreams, and violence

Demanding a balance of perspectives is not pollyanna.  It is not denying the difficulties that may accompany autism.

Because the public discourse about autism is not balanced.  That father who wrote the article was undoubtedly influenced by the public discourse.  He absorbed the message, maybe subconsciously, about the acceptable way to talk about parenting an autistic.  His article is a reflection of the massed negative themes.  The public discourse itself was influenced by the deficit model of autism established by the medical professionals.  We cannot claim that repeated instances of the same theme is another individual, personal reflection when it echoes the very same themes that dominate the public discourse.

Changing the public discourse from overwhelmingly negative is not denying a parent's need for support.  But a parent's need for support cannot cross the line into denying an individual's need for respect.  One person's need for support must not paint an entire group in a negative light.  Especially when that individual belongs to a vulnerable, minority group   Especially when that individual is our child.

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