So, what might autistic people think? The Polls.

 

What follows is not formal research.  It's very interesting, though.  On social media, one can ask questions of those who happen to be reading what you're writing, on that particular platform, e.g. Twitter. 

These polls can show some intriguing results, especially for considering what autistic people might like in their lives.  Few ask us. 

There is often an assumption that we must consider ourselves to be broken, in need of fixing.  Desperate to be normalised.  Keen to only 'speak' the social communication language of non-autistic people, never our own natural language.  Are these things actually true, though? 

Formal research is important, but nearly all of it keeps focusing on the belief that we're broken.  So, it's not helpful for most of us, at all.  Exceptions apply. 

Let's have a look at what some of the polls show.  

Here's our first one. Do autistic people generally care what happens to other people in our lives?  949 votes.  Huge amount said yes, they do.

What about sexuality and gender?  A useful big poll here:

Yes, you're not imagining that.  Three quarters of the autistic people responding to Pete's poll on Twitter said they have a different sexuality/gender to the standard expectation in society.   That's a pretty large number, eh?

A sobering one, next.  The alleged 'gold standard' of autism compliance-training (such as Applied Behaviour Analysis and forms of Positive Behaviour Support) involves taking a child's favourite things away to use as bribery to get them to appear to be 'normal'.  Usually, to disguise distress, pain and exhaustion, stop using vital repetitive behaviour, and comply with anything they are told to do.  This has been regarded as a really good thing. Let's look at whether autistic people think about this:

So, that's just under 1000 votes, the vast majority choosing 'traumatised' rather than very upset or a bit upset, or unbothered.  I see it done to adults in care, also, who have to sit in empty rooms, with every possession removed.

Traumatised.

If you're not feeling worried about what's been going on, well, you should be.  What on earth has been happening to the autistic people?  Original thread on Twitter and many comments under it - here:  https://twitter.com/AnnMemmott/status/1322089326533087232

Big number answering regarding their views of Applied Behaviour Analysis:  Nearly every one of the thousand autistic people answering this said they thought it wasn't helpful for autistic people.  

Next:

This one had 491 votes and was about whether autistic people can use spoken language reliably.  Most could, but quite a few cannot use it reliably, and a smaller number couldn't use it at all.  Important to remember when preparing research, eh. How are you making your question answering possible?

Moving on...

This one had 885 votes, and was about autistic shutdown and meltdown.  Shutdown - when very overloaded with sensory/social stuff, the brain goes into emergency 'shutdown' and switches off most communication, movement, etc.  Very unpleasant to experience, and why we are so careful to avoid those triggers.  Meltdown - a brain event with same reasons, but behaviour becomes loud and random for a while.  Not a temper tantrum.  Most assumed that autistic people only have meltdowns.  Nope.  Most only/mostly have shutdowns.  They look quiet and peaceful.  It's no wonder we failed to diagnose most autistic people, eh.

OK, next, with 1468 votes, whether autistic people want people to experiment on children using drugs to see if it normalises their social skills.  Strongly no.

And next,

This one is from https://autisticnotweird.com/2018survey/ and asked a very large number of autistic people many interesting questions.  One of them is shown above.  If there was a cure for autism, would they take it?  I've chosen the results for those who do not use spoken language much/at all, and those who have learning difficulties.  Two groups who are assumed to want a cure.  No, they generally don't.  Nearly 70 out of every 100 a definite no.  Only at most 15 out of 100 might consider it.  So, what are we doing when we aim for a cure?  Whose lives are we prioritising?  Those of autistic people?  Or the convenience of others?  What are our ethical choices here, given the right of disabled people to choose their own best lives?  Yes, it's a formal Human Right, and it's in the laws most countries have signed up to (UN Convention on the Rights of Persons with Disabilities (CRPD) )

There is a new Autistic Not Weird Survey results page out at https://autisticnotweird.com/autismsurvey/ with thousands more autistic people from all over the world answering its questions, including those with academic learning disabilities and those who do not use spoken language reliably/at all.  Go look.

Let's look again at the 'official' way to treat autistic people in care settings and secure hospitals, which is called Positive Behaviour Support (PBS).  

649 votes.  Taking out those that said 'just shown the results', three quarters of the people responding said no, they did not want autistic people to receive PBS.

So, why is it the standard approach?  It's as if few people ever asks autistic people about things.

I do.

Lots to think about, isn't there.

Above, another useful one.  Does making eye contact with others lead to a better quality of life for autistic people?  Generally no.  In fact, lots of no.  Hundreds of responses.  So why are we enforcing it?

What about sensory difficulties?  We hear that some autism 'experts' claim sensory difficulties aren't actually a real part of many autistic lives.  Well, here's a big poll result.  Nearly 2000 people voting in total, though 11% of those just wanted to see the answers.  Nearly every autistic person voting said they had one or more sensory difficulties bad enough to cause them distress, when others seemed unbothered by those things.  Mmm....so, not part of autism, eh?

Here's our next surprise.  Is "restricted and repetitive behaviour" in fact often or sometimes because we're trying to avoid sensory overload?  Overload that might push us into a painful, exhausting brain event such as meltdown or shutdown?  Why yes, it is.  And yet on a regularly basis I see academic papers saying there's no link, honest guv.  Did they just make that alleged fact up?  I think so.  Who asked the autistic people about this?  This is why doing environmental 'audits' to check for sensory hazards can make such a difference to autistic lives.

Sometimes, I get people saying, "But Ann, what about the Real autistic people - you know, the ones in a care home?".  There are indeed autistic people with high support needs, though they are no more or less real than the rest of us.  There is no evidence that their views differ so far.  I'd suggest you go and ask them.  Then you'd know. 

It appears that only 15 out of every 100 autistic people has a learning disability. https://bmjopen.bmj.com/content/9/8/e029040.full?fbclid=IwAR1c5qMgMj5JQlXpVb7SNTAEybf6WZnih34Fhunfa1pCvWCx0pbU6aHINMc

Most of those individuals would have a 'mild' learning disability that doesn't stop them using social media, writing, and answering things.  Almost all can communicate their wishes, if enabled to do so.  Do we enable them to do so?  Why not?

Do neurodiversity supporters just not care about autistic people with higher support needs? 

We get this question a lot. Some parents and groups have gotten themselves convinced that the word 'equality' means 'no equality for their child', which is weird.   So I asked if we support human rights for all autistic people.  Here's the result.  Again, hundreds of votes on this poll.  Just about every single person supported human rights for all.  Neurodiversity equality means exactly that.  We want equal human rights for all autistic people.  Simple, really.  There are a handful of autistic people who believe they are superior to other people.  Those are Supremacists, not neurodiversity supporters.  Supremacists exist in every part of society and aren't an autism-thing.

What about cost?  The myth that nearly all autistic people sit around being a Burden to Society and costing $billions?  Well, it would help if we had found most autistic people, in order to get meaningful answers to that.  But we were only locating the ones with higher support needs.  Embarrassing, really.  It's improving.  We have some emerging info, though.  This, by Beth Noble in the published Masters paper, showing what 83 autistic people were doing. It's similar to a lot of other studies happening. A different pattern, but most are employed, self employed, students, retired or carers. Very few are out of work.  Certainly many autistic people are underemployed because of prejudice or lack of simple cheap support.  A few really cannot work, and that's understandable, of course.  It's difficult to see how this matches with the idea of us all being this Huge Burden, eh.  Being clear that a person's worth is not defined by the contents of their bank account.  All human beings are of the same worth, equally deserving of a good life and their human rights.

More about employment at https://annsautism.blogspot.com/2018/04/autism-mythbusting-employment.html

What about the environment?  One study recently alleged that we don't do enough for the planet, and might want to have therapy to make us better citizens.  No, I'm not inventing that. Unfortunately their research method forgot to ask actual autistic people, and forgot to ask what we actually do about it.  An easy mistake to make, I'm sure. Original twitter link to this
This poll showed that nearly every autistic voter said yes, they care about the planet's environment.

What about a sense of humour?  Lots of researchers claim we don't have one.  It's never been clear why.  So I asked autistic people.  About 4000 people interacting with it.  Do autistic people lack a sense of humour?  No.  In fact, I can safely say that I know hundreds of autistic people whose sense of humour is absolutely brilliant.  Different to that of others, perhaps.

I hope that this has been interesting.  It's mostly not "science", though some of the above is from formal survey and academic research. But, life isn't 'science', is it.  If we want autistic people to only exist in a test tube, go ask scientists about us.  Otherwise, ask us.

There's plenty more polls and surveys from autistic people.  As I say, I wish there was indeed more research happening that asked autistic people what we want for our own lives.  We're not the possessions of other people.  We have our own Human Rights, including the right to our own identity.

What I'd like is for research teams to have a read, have a think, look hard at what they're doing, and challenge themselves.  Is this what autistic people actually want?  What information have I been given, and is it actually true, or was it based on ancient info gathered from a group of young men with high support needs?  Have people always just assumed this approach is OK, because someone with a clipboard or a book contract told them so?

Always work as equals with autistic specialists and advisers.  It's a good way to ensure that you are respecting autistic lives, cultures and communication patterns.  And, most importantly, valuing what we want from our lives.

Thank you for reading.

https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html for more of the modern research that changes most of what we thought we knew about autism

Belonging - about Autism and Church

 

Across social media, I'm well known for academic autism thoughts and some lively threads amongst some 40,000 readers. 

But a fair bit of my background is in faith work, and has been for some decades now.  

Examples?

Writing the guidelines that inform national work in the Church of England, which can be found at  https://www.oxford.anglican.org/autism  for example. Glad of the collaboration of many others with this.
Being a guest preacher at St Martin in the Fields in London for the disability conference weekend. 
Being part of the planning & accessibility processes, and occasionally a speaker, at the events held there in collaboration with Inclusive Church. 
Co-leading the neurodiversity training for the Diocese of London, now being trialled in different Dioceses.
And, having been a 'fairly regular' for Radio 4's Prayer for the Day series, etc.

I work with fabulous people, and many very inclusive and generous leaders.

But I'm also a very controversial figure in some of our churches.  Various senior Clergy will be nodding, about now, probably mopping their brow with a page torn from 'What Clergy Vestments, Autumn Edition'.  

I have the nerve to ask that we enable people to belong to church.  Examples: 

Autistic people.
People with mental health conditions.
People from other neurodivergent groups, e.g. Tourette's, ADHD, dyslexia.
People with intellectual disabilities.
People who are LGB+
People from ethnic minority communities.
People of different genders, e.g. Trans, Non-Binary.

Notice the word I used.

Belong.

Not 'welcome'.

Belong. 

Anyone can 'welcome' someone, but it doesn't necessarily lead to belonging.  

I might be 'welcome' as a very divergent person to sit on a pew by myself whilst the rest of the congregation pretends they can't see me, for example.   

I might be 'welcome' to donate money, and the 'welcome' disappears the moment the cash dries up.  

I might be 'welcome' to attend, in the hope of curing me of my gender, sexuality and neurodiversity, so that the occasional church leader can earn a nice award for Being Kind To the Different People.  

I might be 'welcome' to listen to churches saying derogatory things about me from the front, whilst showcasing people who think I should be in hell, and definitely shouldn't be allowed to train anyone or speak to others.  

I tell you this; I don't feel welcome when that happens.  

I'm interested in belonging.

Where do you belong?  Where are you comfortable enough to relax, to close your eyes, to just 'be' alongside others, totally trusting and enjoying their company?  Where are people on your side, wanting you to thrive as your authentic self?  Where is your story a thing that people yearn to hear, or read... to affirm, to listen to, without turning you into a DIY project for them to fix?  Or for God to fix...without your consent.  Or only listen, pretending to be friends, to get you to 'confess' so they can use it as a weapon against you?

Where would you be missed, if you didn't turn up?

Churches do a lot of 'welcome'. Some get it right.  There's excellent people, and ordinary people, and people who are simply learning.   But some fall far short of offering belonging, and they really don't want to try.  Others, as per recent Inquiries and Reports, have covered up appalling practices that are simply heartbreaking.

We can do better for the 1 in 7 of our congregations and communities who are neurodivergent, and amongst those, the millions of autistic people worldwide.

Mine is a simple faith.  I follow Jesus.  Others don't, and that's their business, not mine - I am not leaping about trying to convert anyone else. 

Jesus said we were to love one another.  He really didn't say, '...except that lot over there - perhaps we'll just offer them a lukewarm half-smile to go with their lukewarm half a cup of tea, whilst hoping they go somewhere else for a church service'.

I'm thankful for artists like Naked Pastor, whose work includes this:

Which invisible lines keep divergent people out of groups? Who maintains them?

Who decides who belongs?

I'm also one of the speakers at an event called Shut In, Shut Out, Shut Up: Neurodiversity and Church, which is part of the HeartEdge series.   We were talking about some of this.  

 https://www.heartedge.org/main/news/post/322-shut-in-shut-out-shut-up

As we live in a world of increasing climate crisis and warmongering, money worries, job losses and worsening mental health situations for so many, our welcome as a church needs to be the most sincere it's ever been.

All belong.

Nothing else will do.

Thank you for reading.

Making Autistic People Comply - Ethical Concerns around Genetics & Human Rights.

More and more research is happening around autism.

This week, some papers have been published suggesting we're close to understanding how to control the behaviour of autistic people. How? By altering our body's internal 'programming', its genetics.  One of these papers even compared us to cows who need their own 'programming' altered to make them more tame.  Why?  So cow-handlers don't have to bother earning the trust of the cows.  They can just make cows that do exactly what they're asked to do.

I know some will immediately say, "Well, hey, autistic kids are badly behaved, right?  Don't we need this stuff, so they behave better?"

I've done quite a bit of research into the dodgy stuff published about our alleged 'bad behaviour'.  Here is some of it.  https://annsautism.blogspot.com/2020/05/autism-and-myths-around-violence.html   Summary - oops, we forgot to mention that generally, non-autistic children are more violent than the autistic ones.  We also forgot to mention that we hadn't even found most of the peaceful autistic children, in most studies.  Why? Because we were mostly only looking for, and diagnosing, the ones who were disruptive in classes and in the family home.  Huge numbers make it through to adulthood without a diagnosis.  They're not on any research paper, because no-one even realised they've been autistic all their lives.  The research we had about autistic 'behaviour' was dodgy as hell, in other words.

And here is a link to a lot more modern research into autism. https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html

About genuine difference, not fault.  About genuinely different social communication that is every bit as effective.  About honesty, integrity, dedication, concentration, fairness.  Unfortunately, too many papers still use research that dates right the way back from last century, when we'd only found a few autistic people, most of them in care homes. No wonder we misunderstood autism, eh?

So, we have these genetics papers.  Each promising a Golden Future where these 'badly behaved autistic kids' suddenly become perfect little robots, just by taking drug X, or Y. Well, that's the plan, as soon as they can make drugs X and Y of course.

But, wait.  What makes society think that this would only work on autistic children?  
What's to stop someone saying, "Hey, this could work on gay people - we could alter their behaviour to turn 'em straight!"
What's to stop someone saying, "Hey, I'm an evil dictator in some despot state and I have $$billions in the Bank.  I know, I can buy me some science and some drug labs, and find me a way to alter the behaviour of the people in my country.  Imagine how much easier it will be if everyone is compliant.  Everyone does as they are told!"

What's stopping that?

In theory what's stopping it is the ethics specialists.  The people who give permission for this kind of research to happen at all.

I'm wondering what's going on, in those ethics rooms. 
Are the ethicists aware that the data on autistic people are wrong?
Are the ethicists thinking through the perils of what could happen, when we make behaviour-control drugs a reality?

I would like to see some proper, robust thinking.
Thinking that takes into account the Human Rights of disabled people, as clearly set out in this:  

https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/the-convention-in-brief.html

That's the Convention on the Rights of Persons with Disabilities (CRPD).

Many countries in the world, including the UK, have signed up to this.

"Countries must protect the physical and mental integrity of persons with disabilities, just as for everyone else (Article 17), guarantee freedom from torture and from cruel, inhuman or degrading treatment or punishment, and prohibit medical or scientific experiments without the consent of the person concerned (Article 15)."

No medical or science experiments without our consent.

Did we consent to having our behaviour controlled with drugs to make us more compliant?

What are the safeguarding concerns around drugging children to make them comply with anything they're told to do?

What happens to them in the hands of a predator?

This isn't some utopia where children skip across the grass, suddenly happy about their lives.

This is hellish, and we need to think very, very carefully about what we're doing here.

Thank you for reading. 

 

Baffling Behaviourism and Autism

 

Let's talk about Mary.

Mary, age 28, found herself in a day care centre.  We don't know if she wanted to be there.  Mary had a learning disability.  Mary wanted to leave the room she had been placed in, and go somewhere else.

Behaviourists were employed to stop her.

Here's an extract from the research paper about Mary and some others.  The paper can be found at 

Lehardy, R. K., Lerman, D. C., Evans, L. M., O'Connor, A., & LeSage, D. L. (2013). A simplified methodology for identifying the function of elopement. Journal of Applied Behavior Analysis, 46(1), 256-270.

So, Mary wants to leave the room.  If she does not ask in Just The Right Way, the Applied Behaviour Analyst physically blocked her.  If necessary, using physical force to stop her, along with refusing communication with her until she complied.

Where are Mary's rights in all of this?

Does the presence of a learning disability mean that Mary has no right to decide for herself what she does with her days?

Does the learning disability mean that Mary must comply with the instructions and physical force of a stranger, to prevent her opening a door?

No, it does not.

But, in the world of Behaviourism, Mary has few rights.  Anything a behaviourist deems to be potentially 'dangerous' can be prevented.  Thanks to the way their research is conducted and written up, if a behaviourist deems that a tiny behaviour could become dangerous in future, that tiny behaviour can be stopped.  By force.  By hour after hour of relentless coercion.

Here's some more examples, from recent research done by the Applied Behaviour Analysis industry (ABA, sometimes now called Positive Behaviour Support (PBS))

I wish these were the only examples I have.  There are journals full of these.

The behaviourist claims that moving a finger today will mean full-on self-harm if we don't stop it.  Some claim that if we don't 'normalise' the child, they will be denied basic human rights by others, so it's only right to do so.  Despite evidence that the normalisation process leads to suicide and poor mental health.

Everything is about the power and control of the behaviourist, and the hopeless cluelessness of the autistic people and people with learning disabilities.  

This is astonishing, isn't it. Utterly inappropriate, in fact, in my view.

Most recently, we have a paper claiming that young autistic children may not move a toy unless the Behaviourist approves of the way they are moving it.  A toy knight must only be played with on a pretend castle and nowhere else, for example.  Not on the table, oh no, that would be wrong.

The child is drilled for hour after hour until they comply with the 'right' way to play with each toy.

I wish I was joking.  Here's the link to a Twitter thread about the paper.  It's not just me.  Look how many different specialists are on that thread, from different spheres of work, saying, "Heck!" or words to that general effect.

 https://twitter.com/AnnMemmott/status/1294543908693835777

This is brand new behaviourist research.  The child is forced to comply using whatever degree of physical force is necessary.  Forcing their hands onto the toy, onto the right place.

Here's some more footage of Behaviourists forcing children's hands to be precisely where they want them to be.  And, within this link, further commentary on the serious concerns so many now have about this politically-popular but curiously evidenceless theory, now linked to potentially serious harms.

https://neuroclastic.com/2019/03/28/invisible-abuse-aba-and-the-things-only-autistic-people-can-see/

There are other blogs by me on this.  And, by so many others.

Have a read through some of the research around ABA/PBS on this one:
https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html

But, mostly, worry about Mary.  Mary, as we know, is 28.  She isn't allowed to open a door to go to a different room, in her own allegedly therapeutic environment.  People force her to do what they say.

Worry about all of the Marys, and all of the others forced to perform as inmates of an asylum instead of as people living their own choice of best lives.

Let's change this awful narrative, and listen to autistic people about what we actually want.  It isn't ABA.  It's trust, respect, sharing, communication (in whatever way works best).  It's changing the attitudes of the people round us, not forcing us to be perfect robots to our detriment.

This is 2020.  We're not in the 1940s any more.

Thank you for reading.

Autism: Are you a GP or other Clinician? Quick tips.

Are you a GP or other Clinician?

Are you desperately short of time and resources?

Worried about how to provide the right care for the 1 in 30 autistic people in your Practice lists?

Firstly, this isn't formal training.  For that, you'll have to go through the usual channels.  This is a quick primer, to get you up to speed on the latest stuff in a few minutes. I have a fabulous GP, and I work with many more across the country, in various roles.  Yours is a difficult job, and not made any easier by the current Covid-19 crisis. 

Personal interest: I'm autistic, and a Mum of an autistic adult.  I'm a patient. I train a lot of Clinicians on autism, working within teams, and have done for years.

OK, here we go.
References can be found at https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html

It's 1 in 30 of your patients (and colleagues, and staff, and neighbours, and probably friends & wider family...).

It's probably not far off equal numbers of males and females, but many have other genders such as Non-Binary.  Lots of diversity of sexuality also.

It's all ages.

It's all cultures and ethnicities.

It's all IQs.

It's a genuinely different social communication system, not a broken one.

It's a strong need for routine and predictability.

It's a very different way of processing sensory signals, which can mean that incoming sensory stuff is utterly overwhelming.  Especially background noise or flickering overhead lighting.  Fluorescent lighting is a particular peril for many. This may help.  A personal example.  The level of exhaustion from being in such a space, for some of us, is overwhelming.

In terms of current healthcare outcomes, it's not good.  Yet of course autism isn't a disease. There isn't a clinical reason for poor outcomes.https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/-/media/7079AD79A3874B60A9D2ACF7DC4ADE5E.ashx 
may be helpful for some background info and top tips.https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/asd-toolkit.aspx is more useful info, though some of it may need an upgrade on language and very latest research.  

Broadly, autistic people are dying way too early. Our suicide rates are breathtaking.  We end up with all manner of mental health situations because of relentless bullying, ostracism, defrauding, violence and sundry other horrors.

So...making it possible for us to get a GP's opinion on our health, or a steer towards good autism diagnosis, is vital.  We're now into virtual world possibilities, which may make it easier for some.  But be aware that many find telephones especially impossible.  Be prepared to offer the thing that works for them, instead.

Watch out for myths.
Yes, we can appear to make eye contact.
Yes, we can smile and joke (often when in great pain)
Yes, we can be well dressed and seeming to be socially 'competent'.  That's called 'masking' and the strain of disguising our autism is strongly linked to really poor outcomes for too many.
Nearly all of us do not want a 'cure' (whatever that would be).  We would mostly like life to be doable, and have access to the same human rights as everyone else.
Most of us have lots of empathy for others.


So, make it OK to be ourselves.
Put up stuff about autism-acceptance.
Refer generally to autistic people as autistic people, but ask the person what their own preference is.
Make it OK to wait somewhere doable, for an appointment that is more or less on time.  Otherwise, your patient will likely flee, unable to take the sensory overwhelm any more.
Be gentle and explain what you're about to do.
Be accurate.  If you say, "Just wait five minutes" but you actually mean, "...well, maybe more than 20", that's a nightmare for us.  Be vague if you can't be specific. "Some time in the next 20 mins or I'll let you know there's a further delay", etc.
Be kind.

Goodness me, we live in a world that is so utterly unkind to us so very very often - that kindness and clarity is vital.

Be aware that our internal 'signalling' is often dodgy, so we may not know how much pain we're in...or where the pain is.  But if someone autistic has turned up at your Surgery, something's wrong.  It's not something we'd do for fun.  Investigate.  A member of my family played Rugby for weeks with a broken foot.  He had no idea it was broken.  It didn't really hurt.  Even the Physio was sure it was just a bruise, because it wasn't hurting.  It's very deceptive.  Another member of my family was complaining of vague discomfort, but their mannerism was strange, so the team though it was a mental health incident.  They were dead soon thereafter. It was their heart.  None of the signs and symptoms may match what you're expecting.  Expect the unexpected.

Use visuals as well as spoken questions.  Wait patiently for an answer.  It can help to ensure that people have a double length appointment, to allow for extra time.  Allow an advocate or family member to explain if the person cannot, or if they would prefer the other person to do so.

Be aware of how many autistic people also may have hypermobility syndromes, ADHD, sleep problems, PTSD, or epilepsy (amongst other possibilities). Many end up with quite a list of mental health condition possibilities, none of which match, because no-one has considered autism.  Especially the case for autistic females or those from BAME communities.

Get good training, working with autistic team leaders to ensure it's authentic.  Get to know us as people.  And remember...1 in 30 GPs is likely to be autistic, so whatever language you're using around 'disorder' and 'deficit' isn't appropriate, no matter what it says in a manual.  This is a neurodiversity, and a genuine set of differences.  Start from that knowledge, and good things have a much better chance of occurring. 


Thank you for reading.  And thank you for all you are doing to improve our lives.

Autism, Bullying, Post Traumatic Stress Disorder and Behaviour. The links?

An important study was done by Freya Rumball , Francesca Happé, and Nick Grey, published in 2020.  The link to it is here ,  - warning for medicalised language and discussion around traumatic situations.  

It's about Post Traumatic Stress Disorder ("PTSD").  This is a brain response to extreme trauma, for example a near-death experience, terrible injury, being present in some major disaster.  There's a tick-box list of things that are alleged to cause it.  If it's not in the tick-box list, often no-one is supposed to diagnose it as PTSD, even if the person is clearly traumatised.  Strange but true.

That has failed an awful lot of autistic people, in my view.  

So, this new research happened.  The team found 59 autistic adults to take part in this study.  The team wanted to find out what sort of traumatic things they had experienced, in their view, and whether the people now had symptoms suggesting they had PTSD.

This is one of the pictures from the research. It shows how many of the autistic people had experienced these things, finding them traumatic.  This list is the usual things that cause PTSD (according to the medical lists).

But, the autistic people also listed these as also causing trauma, and these aren't on the usual lists for PTSD:

Many of them experienced bullying as causing immense trauma, for example.  The team did a lot of deep thought about their findings.  This is what they have written:

"A broader range of life events appear to be experienced as traumatic and may act as a catalyst for Post Traumatic Stress Disorder development in autistic adults. Assessment of trauma and PTSD... should consider possible non-DSM-5 traumas in this population, and PTSD diagnosis and treatment should not be withheld simply due to the atypicality of the experienced traumatic event."

In other words, autistic people are indeed traumatised by a wider range of things than the teams were expecting.  And diagnostic teams should be considering PTSD after a wider list of possible triggering events.

"The rate of probable PTSD in our ASD participants following DSM-5 or non-DSM-5 traumas was similar, ranging from 43% to 45%"

So, nearly half of those in this study exposed to bullying/awful social exclusion etc may have PTSD.

Let's think about symptoms of PTSD.  This isn't a full list, and people don't have to have every bit of it.  If you want to look at the full diagnostic lists, this is one here

1. Recurrent, involuntary, and intrusive distressing memories of the traumatic event(s)
2. Recurrent distressing dreams about the events.
3. Flashbacks to what happened.
4. Panic at anything resembling a part of what happened.
5. Avoiding thinking about what happened.
6. Avoiding being near people or places that remind them of what happened.
7. Brain blanks out some detail of what happened.
8. Persistent negative emotional state (e.g., fear, horror, anger, guilt, or shame).
9. Possible irritable behaviour and angry outbursts (with little or no provocation), typically expressed as verbal or physical aggression toward people or objects.
10. Possible reckless or self-destructive behaviour.
11. Hypervigilance (always ultra-watchful for anything resembling what happened)
12. Exaggerated startle response.

Think about the autistic people around you. 
Think about how many are subjected to awful things.  There's good research on that.  See the 'vital research links' blog at http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html for a list of some of the main ones. (And a lot of modern info on autism.  Gee whizz, did we ever have this wrong, eh?) 
Think about how much we talk about 'challenging behaviour' or 'attention seeking'. 

Is it?

Think about how often we employ behaviour-control teams to ensure that the autistic people never ever show their internal trauma to anyone.  Never run.  Never hide.  Never self-soothe.  Never scream.  Never cry.  Never fail to concentrate.  The belief-set that all of those responses are just ways to avoid working or being pleasant to others.

What are we doing?

I leave you with this question.

Thank you for reading.




If you would like support, after reading this post, the following organisations may be able to help in the UK:
 https://youngminds.org.uk/find-help/get-urgent-help/#are-you-a-young-person-in-crisis?  for young people

https://www.samaritans.org/how-we-can-help/contact-samaritan/  for adults

https://www.mind.org.uk/information-support/types-of-mental-health-problems/post-traumatic-stress-disorder-ptsd/about-ptsd/  about PTSD and links to support

In the USA, this may be a starting point for information and links to support
https://www.nimh.nih.gov/health/publications/post-traumatic-stress-disorder-ptsd/index.shtml

Autism and the AQ Test: Big Problems from the Big Questions

One of the most famous autism pre-diagnostic tests is the AQ test.  (Autism Quotient).   It's not a diagnosis.  But many autistic people use it as a guide for whether they go forward for a formal diagnosis.  The creator of this, Professor Simon Baron-Cohen, designed it as a "...valuable instrument for rapidly quantifying where any given individual is situated on the continuum from autism to normality". 

It can be found at https://www.autismresearchcentre.com/arc_tests  and a search engine will lead you to online interactive versions.

But, there are problems.  Many people since have discovered that it's actually not that accurate.  For sure if it's a very high score, the person is likely to be later formally diagnosed as autistic.  But in the 'middle scores', there's quite a lot of autistic people who don't meet the alleged score for 'perhaps you're autistic - go find out?'  So, they may not ever know that they are autistic.

Let's look at some of the questions, to work out why it's a problem.

"I prefer to do things with others rather than on my own".

Well, that depends.  What things?  What others?  Now, if you ask me if I'd like to go to (say) a mapping exhibit at the British Library, with a few autistic friends, I'd be leaping up and down with joy.  But, if you asked me to go to a party to chat randomly to some non-autistic people, I would rather hide under the table, thanks.   Actually, I'll be leaving about 20 mins after having arrived...

"I am fascinated by dates"

Well, as a fruit, they're quite nice.  But a bit sweet, frankly.  I prefer apricots.  What's this got to do with autism?  Wait....not that kind of date?  Well, it doesn't say that.  And I'm not that fascinated by dates & I don't know many autistic people who are.  Wrong question, badly phrased.

"I would rather go to a theatre than a museum"

Which theatre?  What's on?  Where's the theatre? Is the theatre accessible?  What's on at the museum?  We aren't told the answers, so I have no context to decide this.  This isn't an autism question either.

"I find it difficult to imagine what it would be like to be someone else".

Who?  I can imagine what it's like to be other autistic people.  But I find it very hard to imagine what it's like to be a non-autistic person.  And non-autistic people find it really hard to imagine what it's like to be us.  This is called the 'double empathy' problem.  See Dr Damian Milton's work on that.  Easy to find on a good search engine.  So, again, wrong phrasing of the question.

So many badly phrased questions.  The answers therefore are random rather than meaningful. 

Today, I might quite fancy going to the library, with an autistic friend.  Tomorrow, I might want to go to a board games party with another autistic friend.  On which day am I not autistic?  What happened to me overnight?!  Did the autism pack its suitcases and leave?

Particular cultures, ethnic groups, etc may have different answers to the questions.  Different expectations of what they would or would not do.  Different contexts for what is enjoyable.  Females may answer differently from males, for other questions.  What of people who don't use written language?  How do they answer it?  What of people who have a intellectual disability?  How do they answer the more complicated questions?

It has some uses, but it's a very 'blunt instrument', to use a phrase.

It's worse than that, though.

Some teams sneak the AQ questionnaire into their research projects to see if they can play 'spot the autistic'.  It's not always clearly explained that this is meant to be an autism screening test.  I saw an example of this only this week.  So, you've given a researcher data that may indicate you are autistic.  How safe is that data?  How kind do you think the world is, to autistic people?  See my other blogs on this...  The short answer is 'some are not very kind'.  That data can be used against people, alas.  It shouldn't be.  Autistic people are fabulous and wonderful and worth as much as anyone else on the planet.  But this is a world that too often thinks autism = deficit, and once you're identified, you may face a lifetime struggle to regain the trust and confidence of others.  For me, diagnosis was still a blessing overall, but I won't pretend that everyone is pleasant about it.  People's jobs and relationships can be at risk, if information gets released inappropriately.  Awful, but true.

We need to be very clear indeed when asking questions that are designed to screen for autism. 

We need to be ethical.  Sensible about explaining its limitations.  
We need to seek really good consent to obtain, and use, that data.

And we need to be sensitive to how those questions may be answered in very misleading ways.

As part of a much wider assessment, at the request of the person, it has some value, for some.  Autism is a different social communication system, a strong need for predictability and routine, a logical and straightforward way of encountering the world, and (often) a different sensory system.  That's what it should be looking for.  So, it may be useful, for some.  But that's as much as I can say about it.


Thank you for reading.