Saturday 24 February 2024

Codes of Conduct, Disability and Neurodivergence - How to Get it Right

Three illustrations of heads, with brains focusing on different aspects of information - creativity, love, facts & figures

 Good Codes of Conduct are a useful thing for so many places.  Well worded, collaborative, sensible and kind, they can add so much to the need to keep people safe, and keep them clear about what's expected of them.

Unfortunately, some Codes of Conduct are written by teams who have not had diversity training.

One in every seven people is neurodivergent.  For example dyspraxia, dyslexia, ADHD, Tourette Syndrome, autism.  An equivalent number of people are disabled.  There may be an overlap between the two groups.  It is a simply huge number of individuals in almost any organisation.  And yet, not one that is often considered.

The world needs all kinds of minds, and there's good research showing the benefits of engaging with disabled and neurodivergent people.  Often able to 'think outside of the box', often perceiving problems that others had overlooked.  Often fantastic at overcoming obstacles, having had a lifetime of having to do just that.  And often with considerable strengths of all kinds to offer.

Those creating Codes of Conduct may have only the very best of intentions, but some of their examples in their Codes may lead to disabled or neurodivergent people being accidentally and unfairly accused of bullying, manipulative, or inappropriate behaviour.    Others may misinterpret neurodivergent body language, face expressions, eye contact, voice tone, or communication style.  Instead of reflecting on the potential for misunderstanding, some misinformed groups may engage in a campaign of 'information collection' about the person in question, all of which becomes alleged evidence against the person.  Communications are analysed and summarised, a damning case presented - but without the key context they needed - the realisation that the person is communicating in ways that respect their own neurology, and their own cultures.  

How easy has it been for people to disclose that they are disabled, or neurodivergent?  How easy is it for them to engage with any inquiry or disciplinary process, in a way that will be fair for them?  How many injustices have inadvertently been carried out?

I'd like to look at some examples where there can be pitfalls.  Again, stressing that people may have the very best of intentions about all of this.

"Repeatedly emailing people with endless information."

Is it bullying and harassing behaviour?  Or is it a cultural expectation, as is common within autistic cultures if someone is concerned that a point hasn't been understood as yet?  Often a simple one to solve, with a query about why it's happening - and a clear guide as to how much is too much. 

"Being drunk at a meeting".   Is that inappropriate conduct?  How are we finding out whether they are indeed drunk?  There may be definite pieces of evidence, of course - but what if the person has speech apraxia, or other neurological conditions such as a past Stroke that may mean that sometimes - or usually - they may slur their words?  For example, when tired or overwhelmed.  Often a simple one to solve, with the right gentle enquiries. 

"Constantly interrupting others".  Is that inappropriate conduct?  Or is it neurodivergence?  For example autistic people use a different signalling system to determine when it is their turn to speak, so there may be genuine misunderstandings and mistimings because of this difference.  Often a simple one to solve, if people collaborate to find a good 'Whose turn is it to speak' system for meetings. A raised hand, a signal of some other kind that work, a good Chair who manages the process well.

"Insulting behaviour".  Is that inappropriate conduct?  Or might it be someone with Tourette Syndrome, where occasional tics may  - for some - result in some rather lively language or gestures.  

"Failing to engage".  Is that an act of manipulation, or is it driven by neurodivergent bewilderment about process, inaccessible systems, utter exhaustion, etc?

"A lack of positive interactions".  Is that inappropriate conduct?  Or is it a determination to seek social justice and a focus on facts, common in some neurodivergent individuals - and which is perhaps combined with face expressions that do not match the smiling, cheerful disposition often sought by groups.  

"Aggressive interactions".  Is that voice tone knowingly aggressive?  It is common for neurodivergent individuals to sound different to 'typical' voices, and to sound cross, dismissive, patronising, 'overly posh', sarcastic etc when there was no such intent. 

Such matters often require us to consider not just disability and neurodivergence, but also matters of gender & ethnicity, for example.  How many women were accused of being 'shrill' and 'hysterical' if they raise concerns?  How many Black individuals have a different cultural way of communicating, potentially misunderstood by white groups?

Good training is vital.

Good collaboration is vital.

Reflection on what might lie behind particular situation is paramount, rather than leaping to conclusions.

Check your own Codes of Conduct, and make sure that disability and neurodivergence are always included, and always taken into account.

Thank you for reading. 

Monday 22 January 2024

Why is Brand New ABA still relying on evidence from these methods?


A photograph of a padded cell

On social media, I am often told that Applied Behaviour Analysis is now kind, ethical, considers potential harms, and seeks consent or assent from all participants.  I am also often told that it does not use punishments on autistic individuals (or indeed other people).

Oddly, the evidence doesn't support this positive view.

Today, for example, this paper appeared in the research journal lists.  It's from the Applied Behaviour Analysis (ABA) industry.  

In it, the researchers search for good ways to stop 'extinction bursts' from the children.  In other words, where a child fights back against the ABA team and continues to do the alleged 'bad behaviour', sometimes getting much worse before the child gives up and complies with the team.

The team set out a lot of very troubling information.

The children are as young as three years old.

There appears to be no mention of the children giving their assent to any of this, or how they would signal a lack of assent.

There is no discussion of the ethics of what the team is doing.

There is no mention of considering potential harms or adverse effects from ABA, nor discussion of how the original teams did any follow-up to find out if their alleged treatment 'worked'.

The 'bad behaviour' included trying to escape from the padded cells (no, you're not imagining this - that's where the 'treatment' takes place).  Or, falling on the floor, which could be a form of epilepsy, or a motor co-ordination difficulty, not a behaviour.  Or saying anything the team didn't like.  Or trying to take items of clothing off, which might be a sensory pain situation for the child. 

We are told that the children had this 'treatment' for 6 hrs a day, 5 days a week, for example.

The paper makes a lot of mention of punishers given to the children to force compliance from them.

It's hidden behind a paywall, like most ABA research.

Now, I am sure there will be some who say, "But Ann, this is based on older research.  We don't do this stuff now, honest guv".

But, this is brand new research.  And, if the ABA industry doesn't do this stuff now, where are the team discussing how they don't do this now?  Where is their ethical consideration?  Where is their denouncement of the punishers and the padded cell and the endless compliance-training to stop children from trying to escape this (in my view) living nightmare?  Where is the consideration of consent/assent and how meaningful it is if a child fighting, trying to escape or shouting is all seen as 'noncompliance' and not as 'a child saying no to this treatment'?

Is this brand new ABA?  Or is this yet another endorsement of the very same ABA it's always been?

We need to move on from the 1980s.  This wasn't fit for purpose then, and it's not fit for purpose now, in my view.  

I'll leave you to have a look at the external research on ABA, which can't even find evidence of it doing anything much to 'improve' the behaviour it sets out to 'improve', except in the very short term when stared at by the compliance team. Plenty in this blog.  Plenty on X, where I discuss the ABA findings regularly.

If you are in a position to rethink the 'therapy' your child is having, please do.  There are better, kinder, modern, collaborative, ethical, consensual approaches that enable real progress.  Ask the autistic communities about them.  

Leave this in the past, where it belongs.

Thank you for reading.