What’s in a name?

Yesterday was April 2nd.  That is World Autism Awareness Day.  For those of us working with, living with, and loving people in the autism community, it can be a tricky day. When you open your Facebook feed, you will likely find equal measures of celebratory posts from the Neurodiversity and Autism Acceptance community along with sobering posts reminding the world that, down on the other end of the spectrum life can feel bleak.

The problem, it seems, is that this incredibly wide range of people get classified under one name: Autism.

As the mother of a child on the severe end of the spectrum and a clinician who works with families of kids all over the board, I can see both sides. I can admire the unique perspective that an individual with autism might bring to any situation when they are unfettered by the social constructs that bind the rest of us and are free to dive deep in their areas of expertise. I can respect the offense that is taken when a person who is proud of all they have accomplished feels reduced to a “disorder.”  And yet, as I watch people with all of those gifts, I can’t help but feel a twinge of envy.

Our family’s autism is not that kind of autism. Our family has learned to function in a house where there is a code on the door so that all of my son’s caretakers and therapists can come and go as they need to – our house has “shift changes.” Our family has learned to make adjustments when my son swipes his dinner plate off the table and dissolves into a thrashing screaming self-injuring mess on the floor. As parents, we aren’t thinking about the great works of art or complex scientific puzzles that our son is uniquely qualified to unravel.  We are thinking about who will care for his daily needs when we are too old to do it ourselves.

And then there are the families who have children somewhere in the middle. These parents struggle with knowing how much help they should put in place and how much they should encourage independence.  When does the behavior need modifying and when is it the environment that needs to change?  These parents are thinking about how to foster friendships for their children and wonder if a romantic relationship might be in the cards.

Perhaps one day, all of these people will end up with different classifications and diagnoses.  Personally, I think that would go a long way to help the rest of the world in understanding each group’s challenges and gifts.  In the meantime, we are all under the same umbrella. As involuntary members of this diverse club, my only advice is to listen to each other, support each other’s individual right to tell their story, and try to find gratitude in the achievements our kids make – wherever we may find them. As the saying goes, “If you’ve met one person with autism…you’ve met ONE person with autism.” Each family is different, but as a COMMUNITY, we can extend our support to one another and acknowledge that we ALL have the goal of making a place for ourselves in the world.

Rhoni Golden is a physical therapist and mother of three, ages 9, 13 and 15. Her middle child was diagnosed with autism at 19-months of age. She has spent the last 20 years professionally and personally advocating for people with special needs and their families.



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