The quest for a cure for autism?

 

I was listening to the radio, a few mornings ago.  They were interviewing a scientist who was working towards a cure for disease.  He explained how valuable the work was to society, how proud he was to be part of this aim.  The entire interview was portraying him as a hero.  And, in his field of stopping killer viruses, I would totally agree that there's some heroes.

I see the same language, the same aims, the same hero-values, appearing in the quests to 'treat' and 'cure' autistic people.  Some groups of scientists, and people who want us to believe they are conducting some sort of science (e.g. some behaviourists), keen to be the hero, to find the cure.  Keen to allegedly benefit society, to get that award, to raise that trophy.  To share the platform with equally keen parents, who are shaking their hand and crying with relief, giving breathlessly glad interviews to the media about the hero-team that allegedly transformed their child's life...and their family's life. 

Using negative language is very much part of that medical-thinking, and the word-cloud at the top of the page here is fairly typical of the wording in endless science papers.  Papers from teams looking for ways to erase autistic people from the future.  (Well, that's their aim.  Let's be quite clear about it.  A future without autism in it.  No autistic people.)  Such negativity sits in stark contrast to the research, e.g. as set out in https://captapnetwork.wordpress.com/2023/09/19/how-to-talk/ We get much further with positives, kind words, affirming words - whilst of course supporting people well. 

I can totally understand the pull, the attraction, of that set of cure-beliefs.  For nearly 100 years, we had talked about autistic people as nothing more than diseased deficient sub-humans who need curing.  The new evidence is accumulating faster than many of us can post it, and pointing to a very, very different reality, though.  One where it turns out autistic people generally do not want a cure, and do not want to be normalised.  One where many autistic people are explaining that normalisation-enforcement made life worse, not better, for example.  Here's a sample informal poll result, from hundreds of autistic people.  Did enforced eye contact make their quality of life better?  No.  Generally not.

Until recently, few teams had thought to ask the autistic people if they wanted a cure.  Or, if they wanted an intervention to 'normalise' them.  Why?  Because of a belief that autistic people lacked insight into how we feel and what we want.  Thus, it was always safe to assume that Other People Knew Better Than Us.

Do they?  On what evidence?  Once we start poking about in the evidence for this alleged 'lack of insight', we find out it was based on guesswork and misunderstanding, not science.

People started asking autistic individuals of all kinds.  They started reading what autistic people wrote, or signed, or drew. They started really listening.  They started doing big surveys, formal research.  

More examples?  Sure.  Huge modern survey right here:  https://autisticnotweird.com/autismsurvey/
Do take a look.  In particular, take a look at the difference between the aims of the parents/Clinicians, and the aims of the autistic people.  Interesting, eh?

And here, take a look at an impressive challenge to the aims of a lot of the science.  This academic paper is from,  

"autistic clinicians, therapists, educators and researchers, parents, and family members of autistic people of all ages and with all types of support needs, as well as individuals with high support needs. Among us are also autistic people of color, autistic people from the Global South and Asia, autistic women, and autistic people belonging to gender minorities" https://www.liebertpub.com/doi/pdf/10.1089/aut.2022.0017

So, it's a heck of a gamble, isn't it.  We're gambling that the original misunderstandings about autism were in fact right;  that autistic people - including those mentioned above - can't possibly know what's right for our own lives.  That our lives will be transformed by potion A or intervention B, and we just have to trust the Real Adults in the room.

It's very infantilising, isn't it.  Autistic people as eternal children that can never make a decision,  unless it's what to have for tea, or what to wear?   Very much against Human Rights for disabled people, as set out by the United Nations e.g.  https://treaties.un.org/doc/Publication/CTC/Ch_IV_15.pdf

Of course, as the research and surveys show, there are some autistic people who would like a cure.  I respect their views.  But, I can't help but wonder....a cure for what?  

Autism isn't a disease.  It's our brain design.  There's so much research showing differences in function and responses, from the earliest of ages.  A different sensory system. A different communication system.  A different way of perceiving the world.  What on earth would happen if we 'cured' it? How do we know things would be better?  Better for who?  How?   Something to lessen sensory heck would be greatly appreciated by many, for example, but that's not curing autism.  Something to improve focus or daily living skills, perhaps, for some (but have they checked for e.g. co-existing ADHD or dyspraxia? Serious question.)  

The old questionnaires about autism 'cures' were based on us being a Bad Behaviour.  Was autism ever a behaviour?  Or were we only finding distressed autistic people,?  People whose very understandable distress-behaviour was because of general pain, overwhelm, bullying, assaults.  Or because of undiagnosed medical conditions, exhaustion, boredom, lack of enabled communication, sensory pain, etc etc?   So much research shows the lived reality of these things for autistic people, now.  None of those are autism's fault.  They are choices by society, including the choice not to bother researching autistic pain responses & how to lessen the pain.  Or, the choice to portray us as just broken, encouraging others to think badly of us.

Wouldn't it be a better idea to ask the autistic person what they want, & why they are distressed?  Wouldn't it be better to do something to support autistic aims and stated needs instead?  To work with autistic specialists to find real answers to real problems?  To listen deeply, and empathise with autistic lives?

Are a few teams, and some parents, who are questing after a cure/normalisation truly heroes?  That's a very philosophical question, and one we could be here debating for a long time.  What counts as heroism?  Making life even worse for autistic individuals isn't a path to hero status.

For sure, autistic lives - and those of their families - need much, much better understanding and support.  Autistic sensory differences need much better accommodations to prevent sensory pain.  Autistic communication differences need much better understanding in society.  Autistic people need much better protection from predators and bullies.  Autistic people are too often left in grinding poverty, with zero support.  Autistic people are so often denied education and healthcare, & routinely denied endless other human rights.  Will a cure answer these realities?

I am even grateful to endless allies in all spheres, including many parents, many teams, many researchers, many in schools and healthcare facilities etc who are learning, and thinking, and listening, and truly transforming some autistic lives.  I want to be clear about this.  There are some excellent things now happening.  But why has it taken 100 years?  Because we were obsessed with thinking about autism just in negative terms.  

No wonder some hope for some miracle 'cure' that will allegedly transform people and make all of that negativity go away.  Will it?  We have no idea.  None.  We don't know what the side effects of a 'cure' would be.  In fact, there's not a lot of research on autistic people that  bothers to check for side effects or long term harms (example findings about this:  https://journals.sagepub.com/doi/10.1177/13623613221128761 ), or bothers to ask us for consent/assent. See the informal summary at https://annsautism.blogspot.com/2023/01/ethics-and-autism-rights-and.html for example.   I wish I was joking.  

Let's start asking whether autistic people want a cure, or to be 'normal', eh, before assuming that's the pathway to their wonderful future for them,  or a pathway to team heroism?

Thank you for reading.

The hidden nightmare for autistic employees

 

There are endless initiatives trying to get autistic people into employment.  Most portray the autistic people as 'the problem' for employers and society to solve.  This builds on the negative view of autistic people from the last 100 years of researching us and writing about us (mostly without us...).  We are told that we are a burden, a cost, a deficit, a disorder, a danger - the list is endless, and frankly most of it built on nonsense and guesswork. See https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html for some examples.

The attitude of, 'We must get more autistic people into work', also ignores the reality that we've only found about 1 in 10 autistic adults so far.  Our workplaces already have autistic employees and managers in them, doing a great job.  

But perhaps they don't yet know they are autistic.  

Perhaps they cannot yet get a diagnosis due to the barriers in place (financial, practical). 

Perhaps they are afraid of getting a diagnosis, because all they will then hear is how much of a 'problem' they are.  A real worry about being dismissed for Working Whilst Autistic. 

Perhaps they have a diagnosis/have self-identified,  and dare not disclose it, because they fear those negative consequences.  

This is what happens when we portray marginalised people as nothing but problems and costs, of course.  It's not clever.

I've been looking at a piece of new research.  There's a fairly steady stream of stuff like it, so I won't name it here.  But it claimed that autistic employees, "may act inappropriately with individuals of the opposite sex".  Mmm.  Let's look at their research evidence for this, eh.

They claimed that a research team in 2010 had proved this.

I looked at their research paper.  They hadn't proved this.. as far as I could see.  In fact all they did was rely on three old papers, one from 1991, one from 1997, and one from 2001.  Those were from the time when we didn't even have much of an idea that autistic people could exist outside of care homes.  Some of the research was on autistic boys. What any of it had to do with modern employment is anyone's guess.

Onwards I went, looking for this proof behind the statement.  One paper elsewhere relied on something from 1993, which looked at e.g. 12 year olds.  Another had focused on three autistic adults with intellectual disabilities, in 2002.  Widening my search, I tried another bit of research from 1999 which relied on an even older paper from 1981 about people with a learning disability (intellectual disability), of which the research team investigated two autistic people.  

Another paper found one autistic person to study.
Another only examined eight autistic people, none of them employed.

Another, from 2013, focused on 19 yr olds, nearly all male, and of which e.g. 1 of them in a group may have made a rude gesture at someone.

I am not joking.

This is the 'evidence' behind this allegation about us.  There are millions of autistic people in the world, and that's all we have for 100 years of research.  

And, what is it with the 'people of the opposite sex' stuff?  A good third of autistic people are e.g. lesbian or gay.  Erased entirely from research here, it seems. 

I looked for any paper that gave comparative figures for e.g. autistic males versus females (as that's the language used in the papers...).  Nothing.

I looked for any paper that explained what 'inappropriate behaviour' allegedly happened.  Hardly any detail, anywhere. One paper suggested that being anxious or depressed at work counted as 'inappropriate behaviour' if you're autistic.  Really?

I looked for any paper that focused on middle aged and older age groups, e.g. age 40-70.  Nothing.

I looked for any paper that compared the rates of 'inappropriate behaviour' from autistic and nonautistic people at work.  Proper control research, in other words.  Nothing.

So, I asked autistic people about whether they'd encountered e.g. sexually inappropriate behaviour at work.  It is an informal poll, not research.  But it points to a discussion that I haven't seen anywhere in research circles:  What the heck is happening to autistic people in workplaces?

Here's the poll result:

The very big majority of the autistic people responding said yes, they had experienced sexually inappropriate behaviour at work.  It's not valid as a set of statistics, but as I say, this points to something, doesn't it.  And what it points to is pretty horrifying.

Who has kept this negative narrative about us going for the last 100 years, and why?

Whose job is it in Government and services to think about the ethics of constantly portraying a marginalised group as 'the problem', ....and at the same time punishing them for not being in work   .....and not investigating the very real harms that some of them encounter at work?

What a mess.

If we are serious about offering autistic people who wish to work - and who can work - meaningful, safe employment, is this the way to go about it?  I don't think so.  Do you?

Let's do better together, eh?

 

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

 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. 

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

 

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.  

https://onlinelibrary.wiley.com/doi/abs/10.1002/jaba.1054

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.