Tag Archives: autism statistics

Statistics and Parenting

Fear.  I have grappled with fear my entire life.  I’m 54 years old.   You’d think I’d have figured out a magic formula to ward off fear by now…  but I have not.  However I have figured out some things that used to frighten me, but that no longer do.  Things like this:

“Among all autistics, 75 percent are expected to score in the mentally retarded range on standard intelligence tests — that’s an IQ of 70 or less.” ~ Wired Magazine 2008

“Roughly 25 percent of people with autism speak few or no words.” ~ SFARI 2013

These two quotes had not yet been written when my daughter was diagnosed, instead there were countless other “statistics” spoken and/or written as though fact, that terrified me.  I had not yet learned to question everything we were told about autism.  I had not yet realized that almost everything people said to us about autism and our daughter would turn out to be untrue.  I had not yet understood that it was these types of things that caused me fear, not my daughter.

Often someone reaches out to me and they are filled with the same fear I once felt.  They remind me of all those predictions, the “statistics,” the warnings, all the things people said to us that caused me to stay up at night.  Terrified because the way autism was spoken of was filled with dire predictions, awful statistics, and because I did not yet know what autism would mean for my daughter.

It is one thing to read statistics that make you feel terrified and another to live with a person these statistics claim to represent.  A lived life, a human life, a living, breathing, feeling, human being who also has fears and thoughts and desires.  So many parents need help figuring all of this out so they can help their children flourish.  Parents who hear and read all the terrible things people say about autism and Autistic people and then are faced with their child and find all those things being said distance them from the genetically closest human being they will ever experience in this life.  (This was something Emma wrote to her brother not so long ago – “the one closest genetic person to you.”)

Statistics do not help us parent better.

One of the single most important things Richard and I began doing was to talk to Emma as though she understood, even when we were not sure she did, even when she walked away, even when she seemed uninterested, had her back to us, closed her eyes, said words that seemed completely unrelated, wandered off to some other part of the room, even then, we kept talking to her, including her in whatever conversation was going on.  And now.  Now we are so glad we began doing that, because, as it turns out, we were right, she understood it all.

She understood it all.

August, 2014

August, 2014

Aspen Ideas

The word “autism” was never spoken at the session of the Aspen Ideas Festival I attended yesterday.  After it was over I wondered if I’d somehow been mistaken and reread the email I’d received .  This is the email I was sent describing the session:

“How to Recognize Happiness  June 29, breakfast,

Happiness as an ongoing state of mind–rather than a fleeting pleasurable sensation–could be recognized by the predominance of positive affects, by an ongoing freedom from inner conflicts that express themselves in obviously tormenting ways, by a sense of inner calmness, and by attitudes that reflect some kind of benevolence toward others, even though in the case of autistic children, all these may not be expressed in the usual ways.”

My guess is one of the speakers was unable to make it and so it became a more general discussion surrounding conflict, suffering and cultivating a practice to help with that.  The moderator was late, having gone for a hike in the woods and found herself lost.  But the Buddhist monk, Matthieu Ricard, director of the Karuna-Shechen a non-profit headquartered in Kathmandu, Nepal, who in France anyway has been given the label of – happiest man on earth – questioned that title, suggesting perhaps this was a difficult thing to test for, given the world’s current population of over 6 billion people.   It was a perfectly pleasant way to spend an hour of one’s morning, especially if one had come to Aspen specifically for the Ideas Festival and didn’t have any expectations. Certainly there is much to be said about cultivating compassion and putting oneself at the service of others.  Just talk to any parent of a child with autism.

What bothers me about all of this is the lack of conversation, the reluctance to feature autism as a worthy topic. It is something I see all the time.  The people, like myself who are talking about it, are doing so because we are parents of children with autism.  Perhaps it’s seen as a downer, after all there’s no cure, we don’t know the cause, so let’s just not discuss it, let’s not have any conversations about it, let’s not even bring it up.  Maybe it’ll go away if we ignore it enough.  It’s got to be such a drag listening to someone who goes on about autism, the statistics, news stories about the rampant abuse of autistic people, it’s intractable nature, blah, blah, blah.  Why can’t I talk about something more cheerful?

Like happiness, for example.

And here’s the thing – actually I can.  In fact most of the parents with children with autism can.  We parents of autistic children have found ourselves elated by a word, a single word coming from the mouth of our child.  It doesn’t take much for us to feel joy.  Our child can hug us and that lone hug is something we remember as though we had received the Nobel Prize.  Maybe, just maybe, we don’t know the cause, we don’t know the best way to treat it, because autism isn’t viewed with the same sort of panic the avian flu received or mad cow disease or any of a number of topics which swept all of us up in a frenzy of terror.

According to the CDC at least 1% of our population has been diagnosed with autism.  That’s over 60,000,000 autistic people world wide.  60 MILLION!  And yet, autism, gets a big yawn.  So here’s an idea, let’s keep ignoring it, let’s all agree not to discuss autism, because what’s the point really?

By the way, just in case anyone’s wondering, I’m the mother of a beautiful little girl who’s Great-grandfather began the Aspen Institute and who’s hope for the future gets dimmer by the second.

For more on Emma’s journey through a childhood of autism go to:  www.EmmasHopeBook.com