What Not To Say

Last week Boo Bear, Mouse, and I had a wonderful experience at Autism Amped, an event put on by a sorority at St. Kate’s.  I have written before about Boo’s great love for sorority sisters. These young women have taken him in and made him one of their own.  He is invited to hang out with them, they spoil him with chicken strips and candy, and in return he flat out adores them.  Autism Amped is one of their ways of giving back to the community.  It is an evening of games, silent auctions, sensory friendly events, and speakers. The proceeds all go to Autism Society of Minnesota.  This year I was honored to be one of the speakers for Autism Amped.  My topic?  How awesome it is to be autistic, some myths about autism, and why the workforce needs to hire more people on the spectrum.  In a later blog I will talk about why the workforce needs more autistic workers, but today I want to focus on what one should not say about autism in a public (or private) gathering.

I was the third speaker to present that evening.  The first three speakers were the parents and younger sister of a young man on the spectrum who has higher needs.  When setting up this event the sorority sisters were very clear in what kind of language would be tolerated.  In short, we would not be using the terms “high functioning” or “low functioning”.  There would be no Rain Man jokes.  We thought that we had made ourselves clear.   The first three speakers took the stage and the evening took a significant turn for the worse.  Not once did these speakers talk about their love for the autistic son or brother.  They only emphasized his weaknesses.  They were quick to tell the audience that they had to put him into a home by the time he was six years old, as they simply could not keep him at home with them.  As an autism mom, I try very hard not to judge someone before I walk a mile in their shoes.  But, I cannot for the life of me imagine surrendering Boo Bear to a home at the vulnerable age of six years.  This family hit on all of the topics that one would want to avoid in public, or in private. They talked about his personal life, his grooming habits, his bathroom habits.  I have met such parents before.  They are the ones who video tape their child’s meltdowns and then upload the meltdown to social media for all the world to see.  They wear their puzzle pieces like a martyr wears his cross.  They want everyone to see the worst aspects of their child and to pity them.  The only pity I have is for the vulnerable child.  Everyone has a right to privacy, whether they are on the spectrum or not.  No one needs to have their bathroom habits discussed in public.  These odious speeches went on for the better part of an hour.  The fortunate part was that most people who were coming to the event had not yet arrived and those of us who had already arrived were huddled back in the sensory room ignoring them!  A funereal pall fell over the room.  No one was talking, laughing, or playing games.  Mercifully, they eventually finished their talks and left the stage.

I am happy to say that the evening took a distinct turn for the better as soon as this trio sat down. Upbeat music was played, A did a marvelous poetry slam, and I spoke about how awesome it is to be a woman on the spectrum, and why the workforce needs to hire more women like me (and men too!).  But, the earlier presenters made me very sad.  They had dissected the most personal parts of those son’s life in front of a room full of strangers.  They never spoke of him lovingly, they never spoke of his strengths.  All they wanted was pity.  Well, I do have pity, but it is for the son, a vulnerable young adult living out his days in something slightly better than an institution.  He has a right to his privacy, even if he is under the legal guardianship of his parents.  Simply by being a person he has inalienable human rights, and on that stage, his parents violated his rights.  In short, it was heartbreaking and disgusting.  Raising kids is hard work.  Raising a neurotypical child is hard work.  Raising an autistic child is hard work.  Let’s face it, parenting is hard work, but at the end of the day it is worth it.  Our children love us, rely on us and need us as parents to be our best selves when we are representing them.  In midst of all the turmoil of raising small, and not so small humans, let us never lose sight of the fact that they are indeed humans and they have certain rights which must not be violated.

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