Saturday, 4 February 2023

Who Are Autism Conferences For?

 

Clipart of a conference speaker standing at a podium, in front of seated conference attendees

In a recent autism news article, an academic is reported to have said that autism researchers at a conference were very relieved that few autistic advocates were at the event.  Apparently, the nonautistic researchers were comforted to know that if they said derogatory things about autistic people, they wouldn't be facing serious consequences.  

It led to me asking autistic people about their experiences at autism conferences, in an informal poll.

The poll result which is discussed in the text

This is the result.
Of the autistic people who saw the informal poll on my page, only a quarter said they generally felt welcome and included at autism conferences.

It gives us some questions, doesn't it.

If it is in any way representative of autistic conference attendees/speakers generally, what might that say about autism conferences?

Who are the conferences for?

I've been to a few good ones, for sure.  I am thankful for allies and autistic teams who work hard and tirelessly to get things as right as possible.  People who include proper information at the start.  People who put up good, thoughtful access statements, working with autistic specialists.  People who are aware of the need to communicate in writing, sign and speech, etc.  People who think about quiet rooms, and clear information on the day.  About pacing and how to feed back in ways that allow for thought.  People who understand intersectionality and are aware how many autistic people also have other neurodiversities, disabilities or situations in life that means trekking endless miles and paying £500+ to attend is totally beyond their reach.

I looked at some of the recent research on autistic people (2022) from people who speak at conferences.  Too much of it was filled with dehumanising language.  Autistic people, including of course our research colleagues, are described variously as disordered, deficient, as having 'aberrant' brain connections.  The narrative was endless.  The research teams wanted cures for our 'behaviour' and treatments for our 'restricted interests'.  Genetic alterations were suggested to make us the sort of people they assumed we wanted to be, without asking us.

Are conferences for nonautistic researchers, so they can continue to describe our loved autistic people in too-often negative terms, unbothered by challenge from those who have to live with the consequences?  Those who have to face employers who are told we are Deficient and Disordered?  Those who face having their children taken away from them if they dare disclose that they are an autistic parent?  Those who face a life of fairly continual discrimination from a society fed this story about us, without us?  Those who are fellow researchers, afraid to ever say they are autistic, because of the stigma?

There are very good research challenges to that negativity.  Teams of autistic people and allies who are pushing hard against 'deficiency' narratives.  Teams who are pointing to the growing research focusing on a more balanced and fair set of perspectives.  Teams upholding the voices of autistic people of all kinds and all backgrounds, who want to be heard.  

Autistic people don't want to be outside, being given an update on which awful words were used to describe us in the halls of power.  Waiting to find out what fate our alleged superiors have in store for us.

These are our lives.  Our families.  Our futures.

It's not good enough that only a quarter of autistic people in this survey felt welcomed and included in the very conferences alleging to make a difference to our lives.

We must do better.

Thank you for reading.





Saturday, 28 January 2023

On love, in the face of fear

 

A rainbow coloured umbrella sitting upon parched cracked dark soil

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?






 



Sunday, 22 January 2023

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

 

An illustration of a child with their hair in a pony tail, wearing a blue dress.  Their wrist is being held by an adult hand.  Other adult hands point to them, etc. Illustration inspired by work of Meredith Ultra, from Wikimedia.  Creative Commons Licence.

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.

A table of results, discussed in the text

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. 






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.

Epilepsy.

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.










Tuesday, 30 November 2021

Useful New Autism Info for Care Settings

 

This is a list of useful research papers and Commissioned documents that have changed how we think about autistic people, and how we respond to their distress, co-occurring conditions and their brain events.

https://www.ndti.org.uk/resources/publication/its-not-rocket-science  is a commissioned report by young autistic people, on easy ways to make wards and care settings into sensory-friendly spaces.  Lots of useful new information on the sensory needs of autistic people, and the social communication needs.

https://www.local.gov.uk/our-support/sector-support-offer/care-and-health-improvement/autistic-and-learning-disabilities/autistic/considering-and-meeting-sensory-needs-autistic-people-housing is a commissioned paper from the Local Government Association on how to ensure really good housing for autistic people.  

https://www.waterstones.com/book/avoiding-anxiety-in-autistic-children/luke-beardon/9781529394764  is an example of an excellent up to date and accessible book about how to avoid anxiety for autistic children.  Dr Luke Beardon has written other books for different age groups and situations, equally recommended.  Other booksellers are available.

https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2306 is a new paper looking at the huge number of autistic people who experience diagnosable trauma from 'traditional' and other events, including bullying.  It changes how we think about 'behaviour'.

https://www.peacepathway.org/ Potentially useful information about autistic people and difficulties with food/eating.


https://www.jpma.org.pk/PdfDownload/10585 The newer research into autism and hypermobility/EDS, suggesting more than half of autistic people may have one of the forms of hypermobility, which can lead to or include exhaustion, movement difficulties, POTS (potentially causing collapse), and pain.