Tuesday 14 June 2022

Research that dishonours and harms autistic people


A picture of a diverse group of people. The word ERASED is written across it.

This week, thousands of autistic people witnessed a research team describing us as risks, as deficits, as disordered.   Parents of our loved children and young people were described as "Parents of ASD cases".  The research team were very excited to write this research paper, they explained.

The autistic communities received this series of violent, humiliating words,  this dishonouring and dehumanising - and they said it hurts.  They said please stop it.  Some said stronger things.

And it was met with silence.

The team from a top University chose to interact only with people telling them how wonderful their research was.

There's something very, very wrong, isn't there.

Ethics is a vital part of research.  It is about ensuring we do no harm to those we serve.

As researchers, teams are there to serve the autistic communities.  Not to hurt and insult them.

Autistic people are not there to serve researchers as a convenient sample or a way to advance their careers.

I'm part of these communities.  As a proud parent of a fantastic autistic son.  As an autistic person myself.  As a researcher.  As a consultant and lecturer in this field, including to the NHS in various roles.

I am so sad to see some research teams behaving in these frankly callous ways.  I wish the example above was rare.  It is not.

Every day, for me, it is such an honour to do what I can to uphold the lovely autistic people I am delighted to share life with.  My family, my friends, my colleagues, the general autistic public on social media.  Their honesty, integrity, determination, courage and friendship are worth more than words can say.

We are not "ASD cases".  

We are your friends. We are your research colleagues.  We are your neighbours.  We are your fellow NHS workers.  We are artists, and musicians.  We are faith leaders and authors.  We are parents and grandparents, brothers and sisters.

We are worth every bit as much as every other human on this planet.  Our way of interacting, our emerging cultures and ways of being, are worth their place.  

Those that need support have been asking for things that actually matter to us.  There is more research than you could shake a journal at, on this subject. Instead, we get paper after paper describing us like we're some form of disease to be eradicated.

I won't despair of research, as I see so many good people emerging.  People who put us front and centre of research into our own lives.  People who treat us as valued colleagues.  As equals, not as laboratory specimens.  People who are our allies.  People who are autistic and working at the top levels of new thinking, new theories, new understandings.  I am honoured to work with several such teams.

I would very much like some researchers to stop hiding behind one another, and behind dehumanising words.  To have the courage to re-evaluate their thinking and their beliefs.  To have the curiosity to read those new narratives, to meet autistic teams and really collaborate, really understand.

If you cannot gaze upon us and see our worth, our love, our caring, our whole humanity, this is not the field you should be in.

This is our future.  Our lives.  Our present.  Our history.  Our community.

You are not called to erase us, as researchers.

You are called to earn our trust, and share in our future, with love.