Monday 7 September 2015

Non-Autistic Autism Experts: How to get it right...and wrong

The great thing about the last couple of years?  Autistic experts are now equal leaders in autism work.

For decades, we were too often treated as lab specimens or patients by far too many non-autistic professionals.  Not all did so.  A good number have always been marvellous partners for us in the work.

The others?  Many reached some extraordinary conclusions about us, nearly all of which were entirely mistaken.  For example, that we lacked empathy.  Unfortunately for them, they'd missed that we cannot see people's faces properly.  No wonder we couldn't get the response right; we couldn't see whether the person was sad or happy.  No different to accusing a Deaf friend of lacking empathy, because they couldn't hear your tone of voice.

Then we had the myths that it was normal for us to spend half our day in meltdown.  "Oh, that's autism", they'd say, nodding in a wise way over their pince-nez, as we writhed and screamed in pain....and some professionals taught parents  and educational professionals how to restrain us and punish us for being in pain. "Those autistic people are trying to control others with their nasty behaviour!", they claimed.   No.  Unfortunately for them, they had missed all the sensory processing pain that we experience. Then would put us in schools, colleges, workplaces and residential settings that caused intense internal pain for us.  They had missed that we were effectively being asked to be in pain all day, every day.  They had it totally wrong.  That's what happens when some don't have lived experience of autism, and don't listen.

After so many years of clumsy mistake-making, little wonder that there is a new respect for the autistic professionals.  People who have a lived experience of autism.  People who work together with non-autistic professionals to bring about the best possible training.  And the best possible consultancy.  And the best possible science, creativity, art, music, teaching....  People who use autism's strengths of honesty, integrity, persistence, creative thinking and accuracy to ensure the very best ideas and teamwork are available.   People who know how to value those who communicate differently, and can work well in teams of autistic people from all parts of the spectrum.  There have been a good number of non-autistic professionals who can do all of those things too, of course.  But they will never know what it is like.  It's like hiring in white people to speak for the BME communities.   Or hiring just men to speak for women.

How to be a fantastic non-autistic professional?  And what to avoid?

Treat us like the human beings we are, not as a patient.  We are not 'patients'. We are people with a different brain wiring design, from birth.  It has strengths as well as challenges in a loud, busy world.  Be properly, genuinely friendly with us.  If we are colleagues, then yes, we want a friendly working relationship with you. 
Treat us with respect.  Value what we have to offer, rather than dismissing it as irrelevant.
Listen to what we say, and assume that it is the truth. No, we are not likely to be lying to you.  No, we are not likely to have a poor grasp of reality.  We are hugely accurate, if allowed to answer in ways that respect our needs.
Stand up for us when others seek to humiliate us and treat us as if we are worth nothing.
Assume that we are worth our pay.  We are not 'grateful' to be allowed the chance to work for nothing.  Or for a discount.  What we offer is as valuable as it would be from anyone else.
Do not lie to us, thinking that it doesn't matter what you say to an autistic person.
Do not mistreat us, thinking that we will never be believed, so what does it matter.
Include us in meetings and events.  It is never OK to leave us out, claiming it was 'too difficult' or that you would 'tell us what happened'.  Find a way to make that meeting autism-accessible.  It's not hard.
Find out our needs.  Respect our communication, sensory and routine-based needs, in particular.  People who force eye contact on us and never give us a chance to process what's being said?  That's not OK.  Meetings where everyone chatters away and we can hear nothing of it?  How is that fair?
Do  not throw your Titles at us.  So you have a lot of letters after your name and are a Dr or Professor?  Perhaps we are too.  But we aren't bothered by such social constructs.  Generalising, of course.  We don't judge the worth of a person by their title, their bank account balance, their accent or which University they went to.  Those are not relevant to the worth of a person.  We tend to be passionate about fairness, about justice, about creating a world where all are fed, warm, loved and safe.  I get a lot of people who assume that I must be stacking shelves in a supermarket with careful supervision.  I run a £3 million a year Professional Practice.  I'm very autistic.  As a child, I was that girl that rocked in corners and couldn't speak. 

Learn.  Keep learning.  Keep observing, because you are learning from the real experts.  The people who now train you in how to diagnose autism. The people who now provide you with the written materials you use to get those qualifications.  The people who work alongside you in industry and schools, in academic work and creative pursuits.  People of all kinds and personalities.   The quiet ones who use assisted communication or cannot use language?  Think they have nothing to offer?  Look again.  Keep looking, keep learning.  There is such a wealth of wisdom, friendship and joy to be found.  If only more people would stop putting us in huge pain and fear.  If only building designers would take autism into account, and not just wheelchair users.

My fabulous autistic colleagues are now respected as co-leaders in this field of work, alongside you. That's to be celebrated, and respected, and rewarded with proper pay and proper employment.