On love, in the face of fear

 

In recent days, the autistic communities have sat in shock or bemusement at an article which was written about some of us.  Me included.  

It is not clear what the author was trying to achieve. 

What it did achieve is an outpouring of love and concern, from so many in the autistic communities.  Yes, certainly some shock and anger also.  So many rallied round those who had been mentioned in the article, to offer their encouragement, support and affirmation.  So many others sat in small groups, holding one another close and letting tears of dismay fall.

The odd thing, amongst it all, is that the author who had penned those words has a long track history of supporting - and writing about - minorities.  About how important it is to encourage and uphold them.  About how important it is to include and listen to them.  About how vital it is to benefit from their experiences.

And yet, somehow, that journalist hasn't yet made that next step of understanding.  That autistic people are also a minority.  That we are also in need of encouragement and support.  That we are also human beings, able to express pain and shock, fear and dismay.  That sometimes the impact of oppression is the creation of anger against injustice - and yes, it can be hard to hear that pain, pain that comes from a lifetime of oppression.  Being clear straight away that I do not condone any illegal action or any action that breaks the rules of social media. 

Good journalism is about being inquisitive, something that the author has shown in good measure in previous articles.

It's about thinking, "What was it like for that person, to live that life?  What is it like now, to experience what they experience in their lives from those with power and prestige?"  It's about that painful opening of memoirs, notes, letters, blogs, books.  It's about listening and hearing beyond any temptation to think, "It sounds like they are being rude for no reason - I shall not listen".

Hearing pain...listening and loving....that takes courage.  And goodness me I see acts of courage around me so often in the world we inhabit.  

Autistic people are Mums, and Dads.  They are neighbours and friends. They are colleagues and companions.  They are faith leaders and artists, musicians and philosophers.  So many hiding, because of the cruel narratives out there - because of the power that others have to harm them if they disclose.  It's why I have been pleased to work with so many kind and generous allies who have laid down that power and control, and who have wanted to listen to a wide variety of autistic people.  It's why I have spent a lifetime working thoughtfully for social justice in various ways, for various groups, including those needing safe spaces in Refuges.  

I encourage good critique of potentially damaging materials within my role in the Critical Autism Studies academic work I do.  A reality we know from good research is that so many autistic people lead lives filled with ostracism, hate and violence from others.  So many have diagnosable levels of trauma as a result - another reason why the assumption that we have equal power in discussions needs testing and challenging.  It is so important to challenge narratives that portray people as less than human, perhaps - or as people who are nothing but a burden, a disease, a deficit.

Autistic people are often also part of the LGBTQ+ communities, often part of the Black and Asian communities and other minority ethnic groups.  Many are living in poverty, and in lifelong physical pain, anxiety or depression, because of the challenges society places in their path.  Many are women who experience all of the targeting and marginalisation that so many other women experience in society.  This intersectionality makes life harder, and harder, for many - because of the multiple layers of misunderstanding or hate that may be found, from some.  Autistic people are of every age, and the older ones amongst us are facing a fairly bleak future because of society failing to even realise most of us existed, let alone make retirement doable for us.  Those of us who also act as carers for family members are left wondering what on earth the future holds.

Autistic people may sometimes be erased from opportunities to contribute, made out to be either too incompetent to listen to, or too competent to listen to (go figure...).  The standard routes of being heard are often closed to us, and usually any passing nonautistic person is believed to be more expert in autism than any of us who have lived it and studied it academically for many years.  Some give freely of their time to news outlets, and then have their words misportrayed or altered to fit whatever negative narrative those in power want the public to think.  It's awful.   It's why so many use whatever social media they can manage, to try to be heard.  Even that is frowned upon.  How much erasure is too much, eh?

Our loved community members may also have intellectual disability, communication needs, epilepsy, pain conditions etc - but are so often left out of discussions on what really matters to them, what really improves their quality of life.  Very glad of the big survey and new research trying to put this right.  Their input matters.

Every autistic person is a person of full worth, fully needing their human rights, fully needing their voice to be heard....and their pain to be heard.

I hope, and pray, for myself and our lovely family.  For our friends and allies, our colleagues and acquaintances across the autistic communities and the wider neurodiversity, disability, and other marginalised communities.  For a life where we can put our proverbial arms around each other - and around others we love - and know love, peace & happiness at last.  

Until then, we keep hoping..and praying..and walking alongside one another through the fires of hell that some in society have placed in our paths.  

Perhaps one day society will stop lighting those fires, eh?

 

Ethics and Autism: Rights and Responsibilities within Applied Behaviour Analysis - Research by Ann Memmott PgC MA

 

Ethics and Autism:  Rights and Responsibilities within Applied Behaviour Analysis.  Ann Memmott, 2022. 

My name is Ann Memmott, and I am an independent researcher.  In 2022 I completed a piece of research for my Master's Degree Dissertation, through Sheffield Hallam University.  My grateful thanks to Dr Luke Beardon and many of the other Tutors and students, family and friends who guided and encouraged me.  My thanks also to my wise friend, Dr Dinah Murray, whose death in 2021 has left so many of us missing her presence, but glad of all she contributed to this field.  My thanks also to the University for giving me an award for this piece of work, which was of course properly evaluated by internal and external teams & given ethical consent.

This blog is a short and informal introduction to what I did, and what I found.  It is meant for the autistic community, since one of my goals is for all autism research to be for our communities, and co-owned by our communities. The blog does not include all of the material and is not meant to be a comprehensive summary of all of the findings.

The full paper will be published elsewhere in months ahead.  This summary of the work is copyright of the author, Ann Memmott.

I will start with a content warning.  This was a tough Dissertation.  Some of what I found was harrowing to read, and as harrowing to write about.  A little of the findings appears here.  But, it was important as a set of early findings.  It is my hope that when fully published, it will allow other researchers to explore more, and to ask good questions about the training that teams get, and what they end up believing about autistic children and young people.

Why did I study this?

The Applied Behaviour Analysis (ABA) industry claims to be a gold-standard approach to improving the lives of autistic individuals and their families. It uses reinforcement to make a child do, or not do, particular things.  I won't go into detail on what ABA is, here.  Any internet search for 'What is ABA' may give hundreds of ABA industry descriptions.  https://www.spectrumnews.org/features/deep-dive/controversy-autisms-common-therapy/ may be useful as a starting point for a critical look at some of its approaches and claims.  

Logically,  a gold-standard approach would think deeply about ethics, and would make sure its staff were properly trained on ethics and Human Rights.  So, I wanted to do a test of easily-findable recent training materials and research from and for the ABA industry.  I had questions, when I started out.  Examples:

Did they explain to their teams what autism is? 

 

Would they have good comments on ethics, and on Human Rights? Would it look at whether e.g. children were harmed during ABA (adverse effects, etc)?  

Would it encourage lots of thinking about consent/assent from the autistic children, to make sure this was something they wanted - and would teams be trained to let them say or signal no, if they wanted it to stop?  

Did the ABA industry have a lot of openly autistic people writing and developing these materials?  Logically they would do, as this would help make sure the ABA was what the autistic people actually wanted.  It would also help to ensure good power-sharing.

Anyone who follows me on social media knows that I have concerns about ABA, having worked within and alongside the ABA industry for a few years.  So I was very careful to be open about that, and to make sure that I was reporting as accurately as possible.  I really do want other teams to challenge the Dissertation paper academically and see if they agree with it, based on the same sort of stuff I did.  That's what research is about.

I was expecting to find a reasonable amount of evidence that said yes, our ABA teams have the right training for all of this.  

University work uses a lot of different ways to look at stuff.  Mine used a "Critical integrative review".  In other words, I wanted to look at a variety of different materials.  Videos, ethics guidance papers, academic papers found in the top journal for ABA teams, and books aimed at teaching ABA teams about ABA.  I wanted to make it easy for other teams to do the same sort of research, so I carefully explained how I did each stage.  I also did a 'literature review', looking at a huge variety of different papers and materials that had already been written on these subjects.  I thought about whether the ABA industry was properly sharing power and control with autistic people.

I was clear that this was never going to find every single piece of writing and every single video, for my own study.  I wanted to see how easy it was for e.g. a new ABA team member to find the right up to date training, so I used simple internet searches, and picked the most popular and recent items to look at.  In the Journal, I picked a standard number of papers, to try to make it as fair as possible.  It took months to read and research these example more modern materials. The University team ensured students approached all of this in the best possible academic ways.

What did I find?

Well, most of it wasn't what I was expecting to find.  I really was expecting to find a reasonable amount of ethical discussion, and a reasonable amount of people now writing about human rights, etc.   The ABA field makes a lot of claims to be improving fast.  It was reasonable to expect evidence of this in recent journals, books etc.  

But, the results were in:

Very little sign of anyone asking autistic people or working with autistic people.

Very little evidence of anyone thinking about what autistic people actually want from ABA.

Very little evidence of people writing about the ethical treatment of autistic people, e.g. minimising harm, ensuring consent, checking for any harms afterwards etc.

Very little evidence of anyone even talking about Human Rights, apart from occasionally suggesting that autistic people had a human right to have ABA done to them.

I began looking at the journal papers that showed the experiments and research done on autistic children and young people.  I had picked e.g. the first bit of research after pages 300, 900, 1500 and 2100 in particular journal issues for a year. I wanted to make sure I was picking as fairly as possible.

The evidence in the papers pointed to routine use of punishment,  and use of coercive or restrictive practice to achieve results.  Often, the child's parents were also used as ABA enforcers at home. 

I won't give every example, here, but these might give an idea of what was discovered:

A paper which considered how to coerce three children into doing things.  A child’s distress, avoidance or noncompliance was described as problem behaviour on 156 occasions in the paper.  Autism is described as a disorder. There is no mention of consent/assent, nor ethical considerations or approval.   The target ‘problem behaviours’  included having difficulties with removing rubbish from the house, brushing teeth or stacking cups.  Stimming, (repetitive movement or sound) and which is a vital part of most autistic lives, is described as a problem behaviour.  The children were not permitted to escape during the testing.  If the children did not comply, the team turned away from them, thus using ‘planned ignoring’, and removed the materials the child wanted. One should note the concerns of many child specialists around the damage that may be done by this planned ignoring.  It may make it more difficult for a child to form secure attachments to those around them. 

Another paper analysed the toileting behaviour of ten autistic individuals aged between 2 and 13.  They had to sit on a toilet for a set amount of time, at set intervals.  The individuals were watched throughout this process, sometimes by two adult observers in the cubicle with them.   A successful urination or bowel movement resulted in access to a favourite item.  There is no mention of ethics, consent/assent, potential adverse effects from the intervention, potential long term harms or human rights.  Sensory or developmental reasons for difficulties with continence are not discussed.  The privacy of individuals was only discussed briefly in the context of a second observer in the cubicle. There was discussion of whether leaving an individual in soiled underwear would help make sure they didn't soil them again, but this was not considered within the frame of human rights and dignity.

Video materials barely considered most of the areas I was examining.  One, from a professional ABA team,  was full of swearing, which was unexpected, to say the least.

After the months of research, I summarised what I'd found.  A table of some of this is shown above.

Was there a good modern description of autism?  Almost always no, there was not.  How will teams know what autism is, if no-one tells them, one wonders.

Were teams given good ways to think about consent from the autistic child or young person?  Sometimes.  Of great concern, the wider look at literature showed that almost any attempt by the child to say no, or to escape, was regarded as one of the 'problem behaviours' to be stopped.  It was far from clear how almost any child could signal 'no' or 'stop' and have it respected.  But, parents were assured in their own consent forms that the child would be able to say no, and the team would stop.  Did they?  More research is needed on this.

Were teams encouraged to always check for harms from their research?  Sometimes, there was some consideration of this.  Only one item looked at this in any detail.  I could find almost none that followed up the children to find out if there were longer term harms. 

Was there a proper look at Human Rights?  Almost always no. 

Oddly, a lot of the materials around ethics considered things like the ABA teams not accepting a gift from a parent, or the ABA team members dressing in a business-like way.  There was very little that looked at the ethics of what was done to the children and young people.

I had a look at more recent materials, and general ABA materials, to find out if this was improving.  There was some evidence of an improving set of philosophies and a bit more working with autistic individuals.  But, as yet, not enough to make any real conclusions.  It appears that the ABA field is not yet sharing power in meaningful ways with the autistic communities, and it was far from clear that they were properly considering what we actually want.  There was a lot of mention of 'social validity', but mostly claiming that e.g. ABA was a medical necessity.  Little evidence was found to prove their claim of medical necessity.

Recommendations were for example that further research is carried out by other teams to duplicate the methods of this study, and to investigate each of the areas of work I'd looked at.  

I certainly needed a good cup of tea at the end of it all. 

My post-Dissertation comment:

Reflecting on the work, it is my view that the autistic communities need and deserve authentic, meaningful lives.  Lives in which we can be properly heard and properly respected.  Lives where any intervention done to us is done in ways we have asked for, with consent, and with the best of modern thinking from different fields.  It's not at all clear how the ABA field is encouraging its teams to think about any of this in clear and modern ways.

In my experience, life isn't about compliance.  It's about relationship, and one thing I noted during this work was how seldom any of the materials spoke about autistic children with any warmth and caring.  

There's another piece of research that very much needs doing. Where is human relationship, in all of this?

Thank you for reading.