Tuesday, 21 March 2017

Sesame Street and Autism

The famous US television show for children, Sesame Street, has introduced an autistic character. The picture above shows "Julia", the young autistic girl, looking at a butterfly. There was some controversy when Julia first appeared in 2015 in some Sesame Street materials.  The autistic communities and organisations in the US have had some input since then.  We shall hope that things go well, in the storylines.

I am delighted to see autistic characters in shows.  I have two concerns about some aspects of this character.   We learn that it's a non-autistic person who does the voice for her and explains what she is feeling.   Why not one of the millions of autistic people, many of whom are excellent trained actors?   

We read that this is about, "people with autism" and "a child with autism".  That's 'people-first language'.  The idea that unless you put the word 'people' in front of the statement, no-one will know that we're people.  Most odd.  So, I'm a person with whiteness, and person with femaleness.  I'm also a person with right handedness, a person with Christianness, and a person with gayness?    Is that the logic of person first language?   Then why don't we say those things too?   

We don't say, "person with femaleness" because we are not ashamed of being female. And we know females are people.  I think we do.  It goes without saying, yes?

In autistic communities and groups, most don't say, "person with autism", because we should not be ashamed of being autistic.  And we know autistic people are people.  Same principle.

I respect that some autistic people want to be called 'person with autism'.  If that is their personal choice, great.  I'm fine with personal choice.  Most do not want to be called that. There's research.  Truly, most don't.  

I respect that for some, their lives are made hell  - with endless socialising forced on them, inappropriate sensory environments, etc.  For some,  autism can seem like a burden.  I'd like a world that respected our needs and was prepared to offer us the courtesy of adaptation.   For those who have long hours as a carer, with little support, I'd like much better support and better training available for families, carers and teams.   Working as hard as I can to help achieve those things.  I have an autistic son.  I know what you mean.  I'm not for one minute saying that there are no challenges, or that everything is easy when you're different.  But all the tragedy-talk?  It's been a disaster.  Truly.  It's done the opposite of what was hoped for.

So, when a show uses 'person first language', it's making a choice.  A choice that says that the majority of autistic people don't get to decide on the language.  What does that say to autistic people?  I'm not sure.  I know it feels uncomfortable.

In the online media today, we see why positive autistic characters are so important. Comment after comment from some of the public, calling autism a disease (it's not - it's a natural variation of brain design).  Others saying we're all a tragedy.  Mmm, no, most autistic people are fabulous. Every single person is loved and of value as a fellow human being.   Others saying that we are an epidemic that needs wiping out.  No, we've always been here, in about the same numbers - we are just better at diagnosing it now.   And others saying it's a mental illness, which it isn't.  So, endless myths still out there.  Much to be done.  For those autistic people, their families and friends who are reading some of the comments, I'm so sorry.  Truly, I want a world where stuff like this isn't said any more.  Little wonder that the suicide rate of autistic people is so high, when we endure such commentary almost every day of our lives.  It needs to stop.  Really, it does.  It helps no-one at all.  We are all worth respect and love.  If you woke up each day to a barrage of, "You're a disease/danger/monster/burden/low functioning cost to society", how would you feel?  

I want to thank the creators of the autistic character on Sesame Street.  I hope that, together, everyone learns a lot about the wonderful autistic people we share our lives with.  Whether verbal or non-verbal.  Whether young or old, male or female, of any IQ and set of abilities.  We're as varied as any other population of people, but also autistic.   Honest, loyal, dedicated, passionate about learning and about our specialist topics, sensing the world differently to others, communicating differently to others - and adding so much to families, friendships, communities and workplaces.

As you're reading about Julia, or watching the show, find out more about autism from really good sources.  Get good training from groups like Autism Oxford UK, the National Autistic Society award winners for 2016.  They train across the country using autistic professionals who I am proud to work with as a senior trainer. Support charities such as the National Autistic Society, who I help advise, quietly in the background.  And get to find out more about the autistic people already in your life.  We're 1 in 30 of the people you already know, already work with, already share friendships with.  You didn't know that?  That's because so many of us are scared of those public reactions...and others don't know they are autistic, yet.

Be an ally.  And a friend.  It really helps.  
Meantime, enjoy the show.