Sunday, 11 October 2020

Autistic People and Sound



 There is a new article about autistic detection of different sounds.  There is is a link to it, below.  30 autistic children had their brains scanned whilst listening to different sounds.  Non-autistic children did, too ('controls').



Sounds like barking and scratching cause a bigger response, for the autistic children.  Noises like laughing and crying showed a smaller response, but arguably not a lot different to the other children.

Because scientists are apparently trained only to see 'deficits' when they encounter us, they described this as a deficit.  Is it?

At the top of the page is a tiger, quietly approaching through water.  Supposing the only chance of saving a village child's life is to hear that tiger approaching?  Even during times when others in the village are being noisy?

Is it a deficit to hear the sound of animals, and the sound of scratching, better than others do?  What might be approaching?

I'd like scientists and researchers generally to think about why autistic people generally do not see ourselves as deficient and in need of fixing.

What are you missing?



That is from the Autistic Not Weird website at  https://autisticnotweird.com/2018survey/   Well, so much for the idea that autistic people need altering, or curing, eh?

This is 2020, not 1940.  We don't need to keep repeating old myths over and over.  Time to ask us, to listen, to start to understand that difference does not have to mean deficit.  In fact, respecting difference could be the thing that keeps you and your family alive. 

Look around you in the labs and academic settings.  How many of your colleagues are autistic, applying diligence, fairness, dedication, deep analysis to situations, afraid to say they're autistic because of this constant quest to portray us as deficits?  

https://www.theguardian.com/environment/2020/oct/11/greta-thunberg-people-like-me-ask-difficult-climate-questions

Greta Thunberg making a similar point about the potential value of different minds, in creating a future for us all.

Certainly, those with higher support needs do indeed need good support, and no-one is doubting that.  

Does that mean we're all 'deficient'?  I put it to you that none of us are.  We are all fully worthwhile, and every single autistic person has something of value to offer the world, whatever their situation.  Some may be keeping you alive right now. 

Look around you.

Change that narrative.

We need all kinds of minds, to thrive.



https://www.hindawi.com/journals/bn/2020/2807946/



Saturday, 19 September 2020

So, what might autistic people think? The Polls.

 

Picture of a blonde woman in a business suit. Above her, two question marks.


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.

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) )

What about the alternative 'official' way to treat autistic people in care settings and secure hospitals, which is called Positive Behaviour Support (PBS).  This is often based on Applied Behaviour Analysis.


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.

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. 

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 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?

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.  Embarassing, 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.

I hope that this has been interesting.  It's mostly not science, though some of the above is from formal survey and academic research.  There's plenty more.  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.

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 I always just assumed this approach is OK, because someone with a clipboard told me 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





Saturday, 12 September 2020

Belonging - about Autism and Church

 

A bricked up church doorway, accessed up unlevel steps

Sometimes, we glimpse some of the other work I do.  On Twitter, I'm well known for academic autism thoughts and some lively threads. 

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/wp-content/uploads/2019/03/Autism-Guidelines-2019.pdf  for example. 
Being a guest preacher at St Martin in the Fields in London for the disability conference weekend. 
Being part of the planning processes, and occasionally a speaker, at the events held there in collaboration with Inclusive Church. 
Helping Dioceses (church areas) to pick Vicars. 
And, being 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 who are from the BAME 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, and showcasing people who think I should be in hell.  I tell you this; I don't feel welcome when that happens.  I feel humiliated and othered.

There lots of ways that 'welcome' means anything but actually welcome.

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.

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

Churches do a lot of 'welcome'.  But some fall far short of offering belonging.

I don't get that.  I really don't.  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:




A line drawing. It shows a lot of people drawing boxes on the ground, and Jesus erasing those lines.

Which invisible lines keep divergent people out of groups?

Who decides who belongs?

This week, I'll be one of the speakers at an event.  It's called Shut In, Shut Out, Shut Up: Neurodiversity and Church, and is part of the HeartEdge series.   We'll be talking about some of this.  

As we approach a bracing winter of Covid-19 anxiety, money worries, job losses and worsening mental health crises 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.

Sunday, 30 August 2020

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

A group of identical young women, each with a bar code on their neck

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. 



 

Sunday, 16 August 2020

Baffling Behaviourism and Autism

 

A sign saying Door To Remain Closed At All Times

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 Analysis46(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))



Picture of text showing that child must not move their fingers


A picture of text showing that autistic child must not move their finger

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.


Tuesday, 21 July 2020

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

A blonde woman with medium length hair, wearing a jacket. She looks quizzical and there are two question marks near her head

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.

Saturday, 4 July 2020

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

A woman with dark hair sitting on the floor, her arms around her head, seeming very afraid. In front of her, an open laptop computer.
An important study was done by Freya Rumball , Francesca HappĂ©, 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




Monday, 25 May 2020

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

A white woman wearing a grey jacket and white top, thinking, quizzically. Above her head, question marks.

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.




Sunday, 3 May 2020

Autism and The Myths around Violence

A row of children of different ethnicities sitting on a park bench, each reading a book

Above, a photo that is fairly typical for a group of autistic children.  Sitting peacefully, reading.  If you suspect I'm wrong, read on.  In fact, read on anyway....

We've had some strange myths that autistic children and young people ("CYP") are, on average, more violent than non-autistic CYP.

Is that so?

Let's look at the research.

First of all, about 1 in 30 CYP is autistic. All IQs, all genders, all ethnicities, faiths and backgrounds, and all sorts of different personalities.


Second, most autistic people care deeply about others.

If you want a run-through some modern general research on autism, rather than the stuff dredged up from the 1940s, I'd recommend the papers in https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html which talk about lots of new findings.  About honesty, integrity, the reason that our senses are different, & about why we need what we need...
And why a combination of bullying, ostracism and some approaches to 'dealing' with us have been an utter disaster which caused immense pain and distress.  Pain and distress in life is so bad that 6 out of 10 autistic people report symptoms of Post Traumatic Stress Disorder at some point in life, from the latest study.  Remember, if you will, that it's the autistic people who are supposed to be the problem...

So, where did this idea come from, that we were more likely to be violent?


I've had a look back through some old research. https://link.springer.com/article/10.1007/s10803-010-1118-4 is a bit of research from 2010. It's quite famous.  275 other research papers rely on the information in it.

OK, let's look at what this research paper says.  There were 1380 children age about 9 yrs old. They were part of a group where the parents were seeking support, so presumably had behaviours of concern already.  That's an important thing to remember.  This isn't 'all the autistic children in the country'.

Nearly all of them were male, which is odd.  Nearly 9 out of 10, in fact.
Their average IQ was 15 points below the average for the country, with some well into the range of learning disability.  So, this doesn't tell us a lot about females. In fact, it tells us nothing, as the researchers didn't separate out the info for females.

Let's start by recalling our own behaviour as a child.
Be honest with yourself: Did you ever, even once, push, shove, barge past, elbow, or hit another child, e.g. a brother, sister, someone in the playground? Oh my!  In that case, you are Violent.  Did you know that?

OK, let's look at their findings.  They divided the answers into four groups.  Here's the ones for the autistic CYP's aggressiveness to their caregiver (Mum, Dad, etc).

No aggression - 44 out of 100.

One or more episodes of rough play or defending themselves when attacked - 25 out of 100.
One or more acts of definite aggression e.g. perhaps a single hit, a single kick, some time in their life until now, 24 out of 100. 
Violence, ever, using something to hit the person with, e.g. a stick, 7 out of 100.

They looked at whether CYP level of actual violent behaviour of any kind was the same in different years, and noticed that by age 15-17, only about 25 out of 100 were showing any such difficulties, so three quarters were not.

The team didn't consider why the CYP might have hit out at someone, perhaps once in a lifetime.
Was it extreme pain?
Was it fear?
Was it emotional distress?
Was it utter exhaustion after barely sleeping for weeks?
Was it during a meltdown, which is strongly linked to electrical 'spikes' in the brain activity and seems to be a brain event, not any sort of actual deliberate planned aggression?
Was it actually self defence, but the parent hadn't realised it?

Was it in fact another health condition, etc that was to blame, not autism?  We're not told how many of the CYP also had ADHD, or conduct disorder, or a mental health condition.  Learning disability wasn't really factored in either, and we're told nothing about whether communication was enabled.  Not being able to communicate, and not being listened to, is such a source of anxiety for so many.
We weren't there for any of the incidents, so we have no idea what actually happened.  And we don't know whether it was in fact autism that 'caused' any of this.

And, this is 2010.  10 years ago, when we had found only a fraction of the autistic children.  Not most of the girls, not most of those from the BAME communities, not those who are quieter, not those who 'mask' their autism, so go unnoticed, peacefully. So many who were never in this paper.

What we have is a whole set of unknowns in this research paper.
What we do know is that nearly all of the autistic CYP in this curious bunch who were picked for this study were peaceful. Nearly 7 out of 10.

What we don't know from that paper is whether non-autistic children are less violent.  Like most studies, the researchers didn't bother to find out.  What was important was claiming that autism equals more violence, it seems. (I grow weary with the negative narrative about us.  Can you tell?)

Let's look at whether non-autistic children are violent.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3283570/pdf/nihms2126.pdf is a good starting point, by Tremblay and colleagues, 2004.

"B
y 17 months of age, the large majority of children are physically aggressive toward siblings, peers, and adults".Oh dear.  That rather spoils the picture of autistic children being the more violent ones, doesn't it.

"Three trajectories of physical aggression were identified. The first was composed of children who displayed little or no physical aggression. These individuals were estimated to account for ~28% of the sample. The largest group, estimated at ~58% of the sample, followed a rising trajectory of modest aggression. Finally, a group, estimated to comprise ~14% of the sample, followed a rising trajectory of high physical aggression.

So, only 14 out of 100 non-autistic children in this younger age group were peaceful, and the rest were being physically aggressive.  Remember the study for the autistic CYP asks if they have *ever* been aggressive.  Their figure was 44 out of 100, not 14 out of 100.

The autistic children are more peaceful overall, based on these two studies. It's not a fabulous match, of course, since the autistic CYP are older, in their study.

So, what else can we find to prove this allegation that autistic people are more violent, in some way?
https://www.sciencedirect.com/science/article/abs/pii/S0890856717301508


is a 2017 paper from a huge set of info in Sweden.  It looked at whether autistic people had more criminal records for violence.  Nope.   28 out of 100 of the autistic people also had a diagnosis of ADHD and/or Conduct Disorder. The study found that those, not autism, were linked to crime.   If an autistic person had neither, they were no more likely to be violent than anyone else.I've worked amongst autistic people for decades.
I've never met a more peaceful group, on average.  Many working in dedicated ways as (e.g.) Doctors, faith leaders, Nurses, care workers, parents, volunteers, academics, engineers, retail workers, etc. Peacefully, collaboratively.  Others unable to work for various reasons, and enjoying life in peaceful ways in various places.  A few, desperately in pain and showing huge distress behaviour that may appear to be 'violence'.  

If you had a friend who is diabetic, and they went into a diabetic episode where their behaviour became erratic for a bit and they pushed you out of the way, would you think of them as a nasty violent person that you didn't want in your life?  What about a friend who went into an epileptic seizure and kicked out whilst in the middle of that?  Are they a nasty violent person?

Consider that, and then consider how you view autistic people.
Let's look at what's done to so many autistic people.  Go back to that blog I recommended earlier and look at how many autistic people are beaten, raped, defrauded, otherwise assaulted, otherwise bullied, left out of things, ignore when they try to make friends.  Forced into painful and humiliating normalisation programmes.

https://learning.nspcc.org.uk/media/1042/child-abuse-neglect-uk-today-research-report.pdf

That link is a bracing NSPCC report into how many children and young people of all kinds experience violence and worse from some parents and carers in the UK.  Between 40 and 50 out of every 100, at some point. 
And autistic CYP are still more peaceful than other people, on average.  I say well done to the autistic individuals.

Exceptions apply, of course.  In any population of people - autistic or not - there will be some who are violent.  And, if any CYP is violent, obviously there needs to be proper thought put into why.  That's why autistic specialists work with parents and teams, to help find answers. To help spot triggers for events that perhaps others have missed.  All people who need support should get it.

But for sure I am mighty fed up with the narrative that autistic people are more violent.  That leads too many parents to say they don't want an autistic child, because such a child is going to hit them.  Actually, less likely than a non-autistic child doing so, it seems. On average.

It leads to too many groups throwing out autistic people 'in case we're violent'.


It leads to lost jobs, lost relationships, lost confidence, lost friendship opportunities, loneliness, and onto very poor outcomes around mental health and (for too many) wishing to take their own lives.

These are just starting points.  This isn't a formal essay.

But goodness me, they're important bit of information to think about, aren't they.


Thank you for reading.


















Wednesday, 15 April 2020

Autism Diagnosis in 2020


Nearly everything we thought we knew about autism has turned out to be wrong.  

Thanks to the hard work and dedication of thousands of people over the last years, we now know that autism never was a lack of caring about others. Nor was it all about young boys who were geniuses or spent their time biting people.  Nor do autistic people have low IQs on average.  So many myths. Those are just a few.

It makes the job of the diagnostic professionals pretty tough, because a lot of the old checklists and diagnostic tests are pretty useless now.  A lot of the old training in diagnosis is currently of less use than an inflatable dartboard.

I am not a diagnostic professional, but I am a well respected* professional in the field of autism who trains the diagnostic professionals in how to spot autistic people.  I'm also autistic, and work within the NHS systems as well as for a variety of organisations in this field, whilst doing a second Post Grad qualification in the subject.

So, what are we looking for?

I'll generalise.  All autistic people are people with our own personalities and experiences, our own combination of factors.  It's about 1 in 30 of the population.

The links for research mentioned are at 
https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html which also contains a lot of other eye-opening findings.

Here we go:

There's always a different social communication system happening.  One based on accuracy, completeness, predictability. Happiest with a flow of information, rather than a back and forth conversation about trivial social stuff.  In autistic culture, this completeness and accuracy is polite and expected, but of course it's not polite and expected in non-autistic culture, so we have a communication disaster happening from both parties to the conversation - the autistic person and the non-autistic person.  Look for Double Empathy Theory by colleague Dr Damian Milton for more details.   Autistic social communication is nevertheless generally really effective for getting a known task done.  You'll want to look at the DART project work.  The autistic teams won, in a communication task.  So much for it being a communication deficit, eh?


But...so many autistic people mask.  We may disguise that we are autistic.  Very often, we've practised and practised behaving like we're not autistic. Why? So we are not bullied or excluded.  Making painful and overwhelming eye contact that stops us listening to what you're saying.  Practising using non-autistic face expressions instead of our usual ones.  Desperately trying to make conversation the polite non-autistic way, instead of our own polite and effective information-flow way.  It's utterly exhausting, and we often can't do it for long.  Some autistic people can't mask at all, and they get diagnoses more easily (generalising...).  But many fail at the first instance, because a diagnostic professional has it in their mind that autitic people cannot make eye contact and won't express concern for others.  Oh my!


Here's a clue about empathy levels in autistic people.  It's backed up by research also.  We were misunderstanding what empathy looks like, because autistic people are using a different signalling system for it.

Moving on, most autistic people have sensory differences, and those are well worth asking about.  Intense differences, e.g. overwhelmed by background noise, especially in crowded places.  Or blinded by glaring or fluorescent lighting. Crippled by the pain from some sorts of clothing or shoes.  Overwhelmed by the smell of perfume or toothpaste.  

Most autistic people have deep, intense interests, though these can change over time.  Whilst the stereotype is of trains and maths genius, it may be musical, or collecting something that looks perfectly 'normal', e.g. handbags, shoes, etc - but it's the depth of interest, and the joy in having and assembling those items.  The deep need to engage, and the extraordinary expertise.  Also, perhaps the deep anxiety if someone wrecks it or moves it.

Most autistic people may have difficulties with processing our emotions in real-time, and may need a lot of thinking time to work out how to describe them.  Quite a few are also faceblind, so may struggle to recognise people just from their faces.

Most autistic people need things predictable, because we're trying to balance a brain that takes in too much sensory and social stuff.  So being able to predict the oncoming sensory-social load is as sensible as you being able to predict how heavy a bag is before trying to lift it onto a top shelf.  We're surrounded by non-autistic people who are vaguer than the vaguest thing imaginable.  "We'll be back in 5 minutes" (No, you won't).  "I'll give you a call some time tomorrow" (Aieee! When! This matters!).  "The meeting will start at 10 and go on to 12." (No, it won't). "Let's do lunch" (This doesn't mean 'let's do lunch...' Weird, eh?)  "It's raining cats and dogs (Er, nope, just rain).   We may assume that non-autistic people are non-functional and have never noticed this about themselves, but many non-autistic people imagine it's us who are at fault for needing accurate information.  Are you sure?

A good number of autistic people speak differently to how you might expect.  It may be that we don't use spoken words at all, or can only speak some of the time.  It may be that we speak with an accent that doesn't match the expected accent for our region.  It may be that we sound rude and pedantic, angry and uncaring....when that's not even slightly how we feel.  I'm sometimes not able to use spoken language, so I use technology when that happens.  Not a problem. That's what technology is for.  Lots of autistic people find telephone calls difficult or impossible, so that's sometimes a clue.


Many autistic people are so sleep-deprived that we run out of ways to organise our lives.  Some also have ADHD, which makes organising things very tough indeed.  This kind of executive function difficulty was assumed to be part of autism, but some emerging research suggests it's actually exhaustion/ADHD/both.  Ask about sleep, and indeed about stress, anxiety and depression.  Many autistic people end up with those because of life and the way we're treated, not because of 'autism'.

Think about friendships and relationships.  A lot of diagnostic professionals get into a difficult situation here, because there were old myths that autistic people didn't care about others, didn't want friends, and certainly couldn't have relationships.  Gee, do we know better now!


Lots of us have friends.  Autistic friends.  Possibly autistic friends who don't yet know they're autistic.  Interestingly, most of my friends had no idea they were autistic, but over the years had sought diagnoses and indeed received them.  So, ask about what kind of friend they are.  How do they engage with those friends?  If it's late nights with board gaming, that may be a clue... (generalising, remember!).

Some autistic people are desperately lonely, and will describe professionals and carers as friends.  It's a reality, but it may lead to the wrong tick on the form, so reflect on it carefully.

Some autistic people think they have a friend, but what they actually have is a manipulative person who is using them for stuff.  Check carefully. Lots of narcissists, for example, enjoy keeping a tame autistic person as a friend, as someone who will be a willing audience and compliant slave 24/7, but there's no meaningful friendship happening there.


Relationships - yes, a reasonable number of us can and do have successful loving relationships, often with other autistic people.  Be aware that vast numbers of autistic people are part of the LGBT+ communities.  Some autistic people have a terrible time with relationships due to misunderstandings, or due to finding predators rather than loving partners.  But for sure most do want a good relationship.

Jobs.  Myths aplenty about us all being either computer geeks, or people who yearn to stack shelves in supermarkets.  Heck, no.  Well, OK, some might.  In reality, our interests and abilities are as varied as anyone else's, and there are load of autistic faith leaders, healthcare workers, artists, musicians, Psychologists, Psychiatrists, etc.  In the decades of working in this field, I'm overrun with people in the professions who approach me to say, "Er, I'm autistic, but I daren't tell anyone else, because of the myths and prejudice out there."  Let's stop that, eh?  Goodness me, they are fabulous people.  In fact, all autistic people are, whether working or not, and in any role.  Studies show clearly that the large majority are either working, volunteering, caring for others, retired, or in academia. But...so often have a lifetime of struggle against non-autistic politics, presumption, prejudice and predators (the four Ps).  So many are underemployed, or have to move endlessly from one job to another after managers decide that they 'don't fit', or that really simple adjustments to the workplace are 'too impossible'.  Code for 'we don't like your sort', alas.

Talk to them about brain events.  Either meltdowns or shutdowns.  The latter may be more common, but little talked about and little examined. Both are believed to be connected to epileptiform spikes in brain activity, not to 'bad behaviour'.  A lot of autistic people get shouted at a lot for shutdowns, as people assume we're not communicating in a conversation because we can't be bothered.  If it's a shutdown, we literally can't.

Look at the medical history.  Often there is a trail of misdiagnoses or co-diagnoses as long as your proverbial arm.  Depression, anxiety, query personality disorder, vague attempt at calling it schizophrenia but that didn't seem to fit...maybe eating disorders.  But because they don't 'look autistic', no-one thought about autism.  Anecdotally, a good number of Clinicians mention that autistic people respond very differently to standard medication.  I leave that for the medical profession to contemplate further.


These are just some ideas, but they are so important to think through when you have a diagnostic interview to do.  The forms and process doesn't always make it easy, but I work alongside fabulous diagnosticians who have thought hard about adapting the forms to put in the modern understanding from research, and indeed writing reports that are collaborative, kind, affirming and appropriate.  Reports that acknowledge strengths, as well as suggesting practical strategies for improving life.

No autistic person ever woke up and hoped to be called a Deficit, or a Disorder.  Not even if it says so in the DSM-5 or ICD-11. Let's find kinder words, eh?

Why does it matter, getting a diagnosis?  It might not, for some.  For others, it might be the most important thing that has ever happened for them.  A way to understand themselves.  A way to explain themselves to others.  A way to connect with other autistic people, and learn their own culture, their own forms of natural communication, their own history.  And share in the collective future of autistic people.

We used to see autism in terms of a deficit that no-one wanted.  For some, that may be how they feel.  That's valid, if so.  But for an increasing number of us, autism is who we are, and learning to navigate our differences and our difficulties is best done as our authentic autistic selves, working with allies, and shaping a future which is kinder for everyone.



*although I believe the word 'notorious' has also been used, given my academic challenging of poor practice...