Friday 28 October 2022

I am not a fan of creating a "Profound Autism" category. Here's why.


Photo of a child with blonde hair. Over the photo is written the word Profound, in black against a red rectangular background

Fairly regularly, we get a few well-connected parents demanding that their autistic child be given a 'profound autism' label.  They often claim that their child cannot communicate at all, and that their child lives in fairly permanent distress solely because of being autistic.  

They reason that the moment their child has this word Profound attached to their file, their lives will be transformed.

Oddly, the same parents describe their child's actual list of difficulties.  These often include, on the lists...

Not having their communication enabled.

Extremely high anxiety levels.

An intellectual disability.


For some reason, some professional told the parent that those things are 'profound autism', and they are completely convinced that their child cannot access proper support for any of those things without the word Profound in the file.

It's very strange, isn't it.

And it's not accurate.  At all. 

It's vital that each child gets tailored support. This is easily achieved, in theory, by writing down the correct things on their file, as well as fully respecting them as a human being and fully respecting the warm, loving and caring relationships they need to thrive.  If they need communication support, they should have that.  If they need sensory accommodations, they should get those.  If they have an actual medical condition such as epilepsy, of course they should have appropriate medical support.  If they are in such distress that they are self-harming, absolutely we should investigate the cause of the distress and lessen it.  

We should improve their quality of life and improve their communication methods so they can partner with us in finding their own best ways forward.  And yes, I mean enabling the communication of all children.  All children can communicate.  Not all do using words. We need to be skilled in understanding what they are communicating, and skilled in understanding that autistic communication is often different.

My concerns about the thinking are more than just bafflement about the alleged magic of the word Profound, though.

Regularly, those of us who work in the field of autism, as researchers, lecturers and advisers, encounter some rogue individuals and teams.  A subgroup of people who enjoy finding children who are believed not to be able to communicate, ones who are believed to be 'too disabled' to speak out about what's done to them. We don't have to go far to find horrific media reports on what happens.  Not everyone is a pleasant individual with a child's best interests at heart.  You don't want to know the statistics on how many children's organisations have predators in their midst.  The word 'profound' doesn't guard against this.  It may make the situation worse.

When I attend care settings to advise on a child or young person with higher support needs, what I need is an accurate summary on the file.  For example: (fictional)

"This is Sam.  Sam is 7 years old and likes spending time with her pet dog, and with her brother and Dad.  Sam loves the colour blue and enjoys watching cartoons with people she trusts.  Sam gets on very well with person x and person y here, and uses communication system x to let people know what she needs. (Further details on Sam's strengths and joys).

Sam is autistic, enjoying a predictable routine and really clear instructions.  Sam also has an intellectual disability meaning that (examples) .  Sam is having treatment for epilepsy, and has sensory needs which include deep pressure from (e.g. weighted blanket etc) and avoiding sudden loud noise. See the full OT report in Appendix 2 which details the sensory accommodations needed. 

If Sam is starting to be distressed, she may do X, or Y and then benefits from seeking a quiet space with a trusted person with her and toys A and B. If Sam cannot regulate and becomes more distressed, this is the list of safe, respectful ways we work with Sam to help her regulate and recover...(list)"

I'm now getting a really good idea about Sam as a young person to be respected. Sam as a fellow human being. Sam's strengths, interests and joys.  Sam's loved people and relationships.   Sam having agency in their lives.  Sam having an accurate list of how their brain best works, and what sort of medical and communication/sensory needs they benefit from.  I now have something I can use to help evaluate how well we are meeting Sam's needs, so that we can all work together - Sam,  team, family, our advisers, to improve things still further.  It's collaborative, positive, respectful and  - at all times - considering Sam's human rights.  The team around Sam is picked to be caring, responsible, enabling, able to build trusted relationships, calm and friendly. If they make an error, they want to learn from it.

Such places exist.  Such files notes exist. The young people in such settings have a life where they can thrive.

There is no part of that process that is improved by slapping the word PROFOUND on the front of the file.

Thank you for reading.   

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. 

Thursday 3 February 2022

Transforming our understanding of autistic people - Perception of Pain & Distress in Others


A woman with long hair, sitting at a laptop with her hands over her eyes, in apparent distress

In February 2022, a new publication was released for Criminal Justice teams, in the UK.

"Achieving best evidence in Criminal Proceedings: Guidance on Interviewing Victims and Witnesses, and Guidance on Using Special Measures".

In it, a stark and concerning misdescription of autistic people, in my view: (page 38).

"...witnesses with autistic spectrum disorder..are likely to have little understanding of the emotional pain or problems of others..."

Certainly, in the 1940s, that was one of the original misunderstandings about autistic people.

Let's look at an up to date informal poll result, asking autistic people if they felt this was true, for them.  

The poll, described in the text

There were more than 2500 people interacting with the poll.  Some just wanted to see the results.  That leaves us with just over 2000 autistic people giving answers.

50 of those said yes, they felt they had little understanding of the emotional pain of others.

1,970 autistic people said no, this was not true, for them.

I'll repeat that:  1,970 autistic people responding to this informal Twitter poll said no, it is not true that they have little to no understanding of the emotional pain of others.

If this poll isn't good enough evidence to question that statement, I would direct people to endless personal accounts visible online. Endless blogs. Endless books authored by autistic people. Endless online videos. We can have all manner of academic debates about whether an informal Twitter poll is reflective of the wider autistic population.  That's not the point, here, though.  The point is, if that statement in that criminal justice paper is true, how on earth did we end up with this poll result?  Twitter isn't a hidden backwater.  It's a public social media platform.

For decade after painful decade, autistic people's actual voices and lives haven't been relevant.  Instead of asking autistic people, we've delved into ancient texts, as if we are following some ancient religion instead of dealing with real live people, right in front of us.  And it concerns me greatly. 

What else concerns me? The number of autistic victims of crime.  Here's another informal Twitter poll.  

Twitter poll of results around autistic victims of stalking

"Poll for autistic people.  Have you ever been stalked by someone?".
The majority responding said yes. Big numbers responding again.

We can have another academic debate about whether the percentages reflect the whole autistic population.  Or we can take a step back, sit on our egos, and say, "Oh heck, there are hundreds of autistic people who have been victims of stalking and We Had No Idea Until Now."  We hadn't even been asking these questions.  Across the world, millions of autistic people who are victims of crime, and we know almost nothing about them.

I'd like us to reflect carefully on the message we're giving to Courts and others in the Criminal Justice System here in the UK:  That autistic people can't feel the pain of others?   Do we think this is how we achieve justice for autistic people?  

I would suggest that telling Judges, Juries and Magistrates that we probably can't feel the pain of others is likely to prejudice the quest for justice for us.  It's simply untrue in most instances, and it's extraordinary to find it in a brand new document for something this important.  Autistic people usually feel deeply.  We usually hurt deeply.  We usually care deeply.  Exceptions will apply, as is the case for all humans on the planet.  No Criminal Justice proceeding should start with the untrue premise that the marginalised group are generally unfeeling.  Would it have potential to lead a Jury, for example, to believe the crime against us wasn't that serious, as we can't feel much anyway?  One can only hope not.  But, why say something like this at all?

May I strongly recommend that, when we are writing documents about marginalised people, we include a good number of representatives of different groups in those communities, a good number of academics & others with expertise from those communities, and we get it right?

This isn't the mid 1940s any more, and we cannot simply keep repeating old myths at new audiences.  Autistic lives are as precious, as fully worthwhile, as the lives of everyone else.  Justice is already out of reach of most.  Goodness me, as a victim of crime myself, such a statement portraying me as an unfeeling entity would put me off approaching Police or a Court at all.  It's dreadful.

Autistic people deserve our respect, our accuracy, and our humility in listening to them. Autistic individuals are fully worthwhile people who usually feel deeply for others, are usually victims of crime, and are too often forced to live appalling lives littered with horrifying myths from the past.

Let's do better than this, please.

Thank you for reading.