Autism Acceptance, not Tragedy

April is a time of Autism Acceptance.

That doesn't sound too controversial, does it.  But, it is.

There's people who say to me, "How can we be positive about autism?  Why aren't you more negative about it all?  Why aren't you talking about the hardships that some individuals and some families go through?  Why aren't you discussing those in greatest need of support, who cannot live independent lives or be in paid employment? Where's the tragedy stuff, Ann?"

I'm glad to explain.  It's simple.

We have now had more than 70 years of portraying autistic lives as tragic.

The end result has been more tragedy.

This isn't a surprise.  Suppose we were endlessly negative about (say) women, saying, "Some women live awful lives.  We mustn't say good things about being female, because that's disrespecting the women who really struggle."  Would this be a good thing?  Would it help any of the women who were indeed struggling, if everyone was trained to see women as a tragedy?

The tragedy-narrative hasn't led to better results.  It hasn't led to better services.  It hasn't led to better care.  It hasn't led to better benefits, or better education.

It led to some schools not wanting autistic children there.  It led to some leisure services deciding that autistic people were too much hard work.  It led to too many employers deciding that autistic people were too costly, too problematic.  And it led to some groups earning themselves a breathtaking fortune from providing abusive 'services' to these tragic autistic people.

Exceptions apply.  Of course there are some good services out there.  But generally, the 'awareness' became 'bewareness'.  Beware!  Autism!  Run!
So, that's the reality of forcing an entire population of autistic people to live, endlessly, as figures of tragedy for the media.  Or objects of pity.  Or objects of charity.

This is why the Autistic Pride networks exist now.  They're led and run by autistic people, and their aim is to boost self esteem.  To celebrate autism and whatever makes that person happy.  To showcase autistic arts, etc.  To enable access to things that are genuinely fabulous.  And to share life, friendship and fellowship with other autistic people of every kind.  Whether verbal or not.  Whether of high, low or medium IQ.  No matter what support needs they may have.

Is it perfect?  Of course not.  But it's like emerging from under an endless burden of negativity, into a shaft of sunlight.  And that acceptance, that friendship, that sharing - well, it enables families to relax, to enjoy, to start to thrive.  It enables schools to think, "Hey, what have we been missing here?".  It enables employers to get involved and see us as the fabulous, varied people we are.   And...it enables people to find some answers for themselves, find new ways round obstacles together.  Whatever their desires for their own lives.

Is every autistic person fantastic all the time?  Nope.  We're all individuals, so some of course are grumpy or sad or any other emotion. Some are in terrible pain or fear, because teams inflict pain and fear upon them, quite accidentally, through ignorance.  Some have awful things done to them that are quite enough to make anyone angry, avoidant or afraid.  Some have multiple disabilities or difficulties, and they are rightly looking for good answers.  So finding those good answers is important.  For them, and for their families.

In the wider work I do, I help ensure that care homes are run safely and well, listening to autistic people who live there.  I help families to find positive ways to help their young people to thrive, and direct them to autism-respecting services that enable skills and autonomy without abusive and controlling methods being used. I train teams to understand and respect autistic people, changing their own attitudes to us.   I do all of this with amazing teams of people, many autistic.  Including our own wonderful Autistic Pride Reading charity team, and the amazing experts in AT-Autism.

Our aim is to ensure that every single autistic person is able to live a life that brings enough joy.  Enough focus.  Enough thriving.

As a parent, I've had a long journey through the perils of schooling that went awry, and a fight for basic services.  I'm not living in some fantasy where all is filled with glitter.  

But, the tragedy narrative has caused too may dead autistic people. Too many have fallen into such depression, such anxiety, that taking their own lives is preferable to living another day of fearmongering and loneliness from all that 'othering'.

So, yes, I won't be talking about autism as a tragedy, because we're not tragedies.  We're a group of truly fantastic people.  Once we embrace a deep understanding of autism, and accept, include and enable each other, all of us benefit.

If you are looking to do something positive, donate to an autistic-owned enterprise.  Come along to our public days.  Buy goods and services from autistic people.  Make sure you're not 'lighting it up blue' (a campaign started by a very problematic foreign organisation which doesn't like autistic people at all).  Use symbols like the one at the top of this page, showing autism acceptance.  Red and gold versions exist too.
So, autism acceptance, in April.  We're reclaiming it and making it our own.  

Get to know more about us, and enjoy.

Autism: The Perils of Some Online Training

Not much time?  A problem to trek to a distant training course?  It becomes tempting to look for online training.

Training on autism is certainly available online.  I've seen, and taken, a few such courses.  

Some are reasonable.
Some, frankly, are very worrying.

So, I wanted to share a few important thoughts, for those making decisions about how their staff are trained.  And, of course, to people considering taking online training.

One important thing about autism training is removing prejudice.  Prejudice exists.  It not only exists, but is a major barrier for autistic people.  It leads to terrible outcomes for some.

There has been a very recent study looking at prejudice against autistic people.  It showed that the best way to stop it is for non-autistic people to spend time with autistic people. To get to share life with us for a while, to meet us as friends, neighbours, colleagues, parents, students, volunteers, artists, craftspeople, musicians, etc.  To get to see a few of us, in all our variety, and of course to learn good, accurate information.

Online training courses don't allow for that personal interaction.  People never get to meet us.  So, there is a concern about whether such courses can do much for overcoming prejudice.  That research showed that, for some, just knowing people are autistic makes the prejudice worse, not better.  It needs a trainer's skill to overcome some of that.

Worse still, some online courses show every stereotype imaginable.  Endless photos of a youngish white male, dressed in clothing that looks like it has come from a charity shop, perhaps sitting aimlessly on a bench somewhere.  Or being 'looked after' by some smiling perfect professional.  It's depressing and inaccurate stuff.  Most of us are not male, for a start.  I'm quite serious about this.  If we start looking properly for all the autistic people who do not identify as male, it adds up to more than half the autistic population.  Surprisingly few of us are in care home settings.  Quite a number are business professionals, as likely to be dressed in a corporate suit, or other workwear, as a tracksuit.

Some online training also tends to be filled with myths.  Myths about '1 in 100' being autistic, when that's a figure from decades ago.  Myths about lack of empathy, myths about lack of awareness of others, myths about our communication and culture. Myths about dangerous behaviour, when most of us are safer than other people to be around.

There's another problem with some of the online training.  We don't know who's taking the course.  Unless they are sitting in the room with the 'examiner', it could be absolutely anyone who fills in the answers.  As a HR person or manager, you've no idea if Employee X did indeed get 95% on the assessment, or whether they asked a mate to do it for them.  You also do not know if they simply screen-shotted all the answers and then wrote them out in the assessment bit, without taking in a single bit of knowledge.

But now, they have a Certificate that says they know about autism.  Out into the world they go, looking for these shabbily-dressed young men sitting on park benches  - and perhaps making a right old mess of every encounter thereafter.  It forces autistic people in your organisation to hide, because those stereotypes are simply humiliating for them and in no way represent their own reality.

If you are searching for quality autism training that matches your corporation's ethics and anti-slavery policies, here is your checklist:

1. Autistic people are involved at every level in the training organisation, as equals with non-autistic people.
2. Autistic people designed or co-designed this training.
3. Autistic people lead or co-lead the training, and are paid properly for it, not a book token or for 'work experience'.  Unless of course that was their own personal choice to work for a token amount, or as a volunteer.  Watch out for breaching your anti-modern-slavery policies if you're using companies that coerce autistic people into working for free, when money is paid to others.  It's an embarrassing question to ask, but it's vital to ask it. No good training company should mind affirming that they are responsible about this, and maybe letting you communicate with their autistic trainers about how valued they are.
4. The materials use respectful language about autistic people.  
5. It does not use puzzle-piece logos or promote the work of highly problematic groups that wish to see autism 'cured'. (A similar aim to wanting all gay people cured...yikes, no).
6. It gives trainees an accurate and respectful idea about autistic culture and communication, sensory needs, and the value of passionate interests.
7. It shows how autistic people can thrive, and how to enable us to do our best.
8. It has a wide variety of autistic people represented or described, e.g. of different ages, cultures, ethnicities, social groups, genders.
9. It respects the many ways in which autistic people contribute to society, whether as friends, volunteers, writers, supporters-of-others-online, workers, professionals or otherwise.  But also stressing that all are valued parts of society, all needing lives that are worthwhile, safe and respected, whether in paid employment or not.
10. It focuses on changing the attitudes and misunderstandings of other people, not changing the autistic people to be copies of non-autistic people.  In particular, it avoids problematic 'behaviour-training' such as ABA to enforce such normalisation. 

And... it enables the trainees to feel relaxed and cheered about meeting autistic people, keen to encounter us and learn more from this fantastic and diverse group.

If you are confident that the training ticks those boxes, use it.

I'm open about recommending my own groups and the groups where family members are trainers.  Plenty of other good ones out there, of course.  And there's work enough for all, respecting one another's contributions.  Here are two starting points.

AT-Autism, offering national and international training (CPD, world experts)   Specialises in training organisations to have a deep understanding of autism, and improve their in-house training.

https://www.aprtraining.org.uk/ Highly respected professionals and leaders, autism-positive charity  Working in the central South of England, encouraging the best of cheerful and practical advice for autistic people and all who share our lives.

Thank you for reading.

Driving Whilst Autistic - The Research

Updated 07 September 2020

Here in the UK, we have been having an interesting set of discussions with the Government driving authority, the DVLA.  There was input from various Police Officers, the National Autistic Society, GPs and other interested parties.  The subject - whether it's compulsory to notify the Government that we're autistic, and get a medical professional to confirm we're safe...when we're already assessed and passed as competent drivers. The subject is raised often for discussion by the DVLA's Panel of Experts, so it is important to be clear about what autism is, and is not.

Let us remember that most autistic people wishing to drive make a choice to have driving lessons, where a highly qualified driving instructor already assesses our competence.

We also have to pass the same tests as everyone else, on eyesight, on knowledge, and on practical skills behind the wheel.  These tests are taking by highly qualified examiners, who test every aspect of competence.  100% of autistic licensed drivers were autistic when they took  - and passed - their test.  It's a lifelong neurodiversity, not a sudden health condition.  Not a mental illness/ 'psychiatric disorder'.  That's a fact, not a judgement of mental health conditions.  See the National Autistic Society for details, for example.

Apparently, someone has told the DVLA that autistic people may be more likely to have driving problems than others.

Aside from the illogic of assuming that this would only be apparent after we've passed a test showing we're competent, let's have a romp through the research on this subject.  Brace yourselves and buckle up, my lovelies, because this is going to be a rough journey.

First up, the paper by Haley Bishop and colleagues, published 2018.  They reviewed whatever competent papers they could find on the subject of autism and driving.

We know that much of what we 'knew' about autism, historically, has turned out to be rubbish, and therefore materials from the last few years are the relevant ones.

Ready?  
Buckle up...Away we go.

Almberg et al. 2015.  Forgot to assess whether their autistic people also had ADHD.  Thus cannot tell which characteristics of good or bad driving are which. 
https://www.tandfonline.com/doi/abs/10.3109/17518423.2015.1058299

Bishop et al. 2017.   Small sample of 16 autistic people, mostly male, average age about 24. Used a driving simulator, not real life driving. Couldn't quite bring themselves to admit the autistic people were better.  But they were. https://link.springer.com/article/10.1007/s10803-016-2992-1

Brooks et al. 2016. Minimal performance differences were observed between autistic and non-autistic participants, but using a driving simulator again, not real life driving. Only 10 autistic people. Nothing of danger here then, but sample very small. https://link.springer.com/article/10.1007%2Fs10803-016-2775-8

Cox et al. 2017.  Only bothered looking at novice drivers in a computer simulation of driving, which isn't evidence of anything outside of that design.  Small sample. https://link.springer.com/article/10.1007%2Fs10803-017-3164-7

Patrick et.al. (2018) which looked at 50 autistic young people, compared to 50 controls (assumed non-autistic). Average age 20ish (so cannot say anything about older drivers and their competence when learning or driving after passing a test). Only 8 autistic females tested.  The test wasn't of driving at all, but of operating a simulator, probably under flickering fluorescent lighting.  Of the 50 autistic drivers, 16 also had a diagnosis of ADHD, whereas the control group only had four with an ADHD diagnosis.  19 in the autism arm were on stimulant medication and 24 on psychotropic medication, whereas numbers for the control arm were 3 and 3 respectively.  Use of medication and presence of other diagnoses may impact on driving ability, and this does not seem to be controlled for the study.  Only 15 in the autism arm had a driver’s permit (licence). 22 in the autism arm. The autistic drivers with no permit had only about 1 hr of driving experience compared to 9 for those in the control arm. The autistic drivers with permits had driven for around a year less than those in the control arm.  This is woeful research, and yet the DVLA were considering it when making directions around autism and driving. (DVLA Panel Minutes of 20 March 2019) https://cdn.journals.lww.com/jrnldbp/Abstract/2018/08000/Driving_Comparisons_Between_Young_Adults_with.1.aspx

Reimer et al. 2013 looked at 10 young autistic males, and used a computer simulator, not real driving. Results: "The community controls and HF-ASD groups did not statistically differ in performance...
Two HF-ASD participants and two community control participants were involved in a collision while driving the simulated highway. The difference in speed from the posted limit and standard deviation of lane position did not vary by or interacted with environment, period, or HF-ASD status." In other words, both autistic and non-autistic people were similar in driving skills.
https://link.springer.com/article/10.1007/s10803-013-1764-4

Sheppard et al. 2017 looked at 18 male autistic adults, age about 19, and noticed that slower reaction speed in viewing a video on a computer (not actually driving) was related in part to verbal IQ, not autism. None actually had a driving licence. "...there is no particular reason to predict that task performance would differ for females", they state, basing this on no research at all.  https://link.springer.com/article/10.1007/s10803-016-2965-4

Wade et al. 2015 looked at 6 autistic teenagers.  I don't think I need to say more about this, do I.

We have had concerns about 'executive function'  - the ability to plan and do something.  But the most recent research shows that autistic adults have practised tasks well enough that this isn't any more of a problem, generally, than for any other adult group.  

The research on ADHD, a group also affected by DVLA random rule changes, seems no better.  For example Aduen et al. (2018) who put drivers with ADHD into their own cars, equipped with monitoring technology, and counted how many accidents they had. Then compared that to non-ADHD drivers, also in their own cars, also monitored.  Except...the drivers with an ADHD diagnosis were generally younger, with less education, less overall driving experience, less money to buy a car that had anti-crash technology in it.  They were not comparing like for like.  They hadn't even considered that the car was an independent variable.

Back to autism, where Chee et al (published 2019 in Disability & Rehabilitation) looked at 17 autistic drivers, of which one was female. (I'll let you think about that...).  https://www.tandfonline.com/doi/abs/10.1080/09638288.2017.1370498 All were put into a driving simulator.  The autistic drivers had on average 500 hours less driving experience than the non-autistic participants, but the researchers decided that greater error rates were because of autism.  Autistic people were better at not tailgating, but this was framed as a potential deficit of our spatial awareness.  What is this stuff?

Well.  Mmm.  Older drivers? No.  Experienced drivers? No.  Women drivers?  No.  In fact, no thought at all to the usual groupings of any kind. Yet, the average age for starting to drive is now 26, according to this study.  What is the purpose of only researching those younger than the average, one wonders?  https://www.journalism.co.uk/press-releases/average-age-to-start-driving-now-26-as-younger-adults-put-off-learning-and-car-buying-/s66/a657725/

Most autistic people are adults.  Most are over age 30.  Around half are not male.  Many are from minority ethnic groups, or the Professions.  Some are serving Police, Fire Crew, Ambulance and Paramedic staff.  Doctors, Nurses, professionals of every kind.  Where is the evidence of incompetent driving for those latter groups? There is none.

The new report from the Royal College of Psychiatrists at https://www.rcpsych.ac.uk/improving-care/campaigning-for-better-mental-health-policy/college-reports/2020-college-reports/cr228  clearly says, ".. It is recognised now that most autistic people are adult, do not have an intellectual disability and are likely to be undiagnosed.."  We really haven't found many of the autistic people yet, but we think we know all about them and their capabilities.

Do you understand how depressing it is to be in a world where this research passes as 'evidence' of anything at all?

Our young people deserve a future where their competence is taken as seriously as it is for everyone else.

If they pass a test, they have been assessed as competent.  If that test does not test for competence, improve the test.  Do not punish those taking it.

After hard campaigning and shocked outrage in the UK, the DVLA changed its guidance back to a need to report only 'if it affects your driving', and issued an apology.  This is good.

But...the episode has left behind a trail of damage.  Autistic people who had been shocked and afraid.  Afraid of losing their car, their freedom, their jobs.  Afraid of going forward for support or diagnosis in case someone did indeed remove their licence for Driving Whilst Autistic.  After all, if they are not diagnosed, they wouldn't have had to report in to the DVLA.  All of this happened, it seems, on sheer misunderstanding.  That is an error we cannot afford.  

Any Panel meeting to discuss such a life-changing, financially devastating move should convene only with the finest and best members & facts.  Openly and transparently.

There should be:
Evidence heard directly from those affected, in ways that enable, without exhaustion.  Research commissioned from those with a good modern understanding of autism, using a participatory model that fully involves autistic professionals and colleagues in its inception, methods and implementation. 
At meetings, the top specialists from affirming and enabling charities and groups, with many autistic specialists amongst them.

Similar Panel aims should happen for any other affected group such as ADHD, of course.

The autistic communities have had quite enough of having things taken away from us, and quite enough of meetings about our lives being held without reference to us.  It is really not OK.  We need better than groups whose only experience of autism may have been to watch Rain Man, or meet one of us in a prison.

Meantime, lovely autistic people, continue to drive safely and wonderfully. Do follow legal requirements at all times.  Just like you already do.

Or, if you don't feel driving is for you/something you can do safely, take full advantage of whatever other means of transport exist.  Just like you already do.

Thank you for reading.

I want my autistic child to make friends

Two furry teddy bears leaning against one another, facing the camera

Many parents new to the world of autism are worried that their child won't have friends.

It's certainly true that autistic children can struggle in a non-autistic world.  But there's lots of hope ahead.

The important thing is that the parents know about autism.  Knowing that it's part of brain diversity, not a disease.  In the same way as being dyslexic is a brain diversity.

Knowing that it means their child is probably sensing the world very differently, with way too much information coming in from some senses, and way too little from others.

I recommend that parents have a look at This two minute video, with the sound turned right up  and experience the possible world of their child, in any busy, noisy place.  Parties, for example.  Classrooms.  Supermarkets.  So loud, so bright, so overwhelming.

Parents also need to know that autistic children speak a different 'social language' to other children, so there are misunderstandings on both sides.  It's never the fault of one side or the other.  Both sides need to learn how to 'speak' some of each other's languages.

Autistic children prefer to meet somewhere where there isn't a crowd of others.
They prefer to play alongside another child, using separate toys or games.
They don't make a lot of eye contact, because it hurts tremendously to do so, but they see well out of the side of their eyes, and can hear amazingly well when it's quiet enough to do so.
On average, they play more fairly than others.  But, they may panic if someone takes their stuff away or moves it.  Why?  Go back and watch that two minute video again, and think about what would be calming for that young boy.  A favourite thing?  A familiar pattern?

So often, parents hope that their autistic child will want to go to lots and lots of busy, noisy parties, and make polite conversation.  It makes sense to think this, because that probably works for a lot of other children.  But...it's hell.  Just hell for them.  The chances of an autistic child making a friend when they're in lots of sensory pain are very limited.  Mostly, they'll hide, or freeze, or run away, or maybe get into such a panic that they may lash out in fear.  Certainly they won't be able to think how to say anything useful.  Much better to find their favourite hobby, and find a club for young people to share that.  Local autism charities may well know of such ones.  There are also specialist play centres.  Parties might work if they are structured and in a good sensory environment.  Outdoor play for example, well managed.

There's good humorous books such as this one, talking about the strange behaviour of non-autistic people ("NTs").  I'd recommend such books for the adults in the family as well as the younger people, because there's so much normal human behaviour that is really odd.  But because most people do it, it's accepted.

Schools can really help.  They can learn that autistic children need downtime to recover from sensory hell.  They can learn that a quiet space and a useful hobby can be much better than going out into the deafening swirl of the playground.  They can be understanding of shutdowns and meltdowns, and realise that's emergency behaviour, distress behaviour - not 'challenging behaviour'.  Schools can arrange fabulous training from places like the Autistic Pride networks, which look at self esteem and how to change the thinking of the teams.  Or from companies such as AT-Autism, who likewise look at team training and making life easier for everyone.

And other parents can help, too.  If you invite an autistic child round to play, expect them to play autistically.  Don't be offended if they cannot speak at the time, or need to leave early.  Let them bring their own comforting items and explain to your own child why their friend plays differently.  But that the play is a sign of respect, not rudeness.  In autistic lives, parallel playing and keeping sensory distraction to a minimum can be very respectful indeed of other autistic people around us.

You can help as a parent by explaining positively about your child.  If they use repetitive movements, explain that it helps them keep track of where their body is, or helps them keep calm.  Know that good research shows it doesn't stop them concentrating.   You can be watching out for children who take advantage of them, or enjoy bullying them or getting them into trouble. 

Help by refusing to buy into expensive and useless 'treatments' that allege to stop autism.  It's like trying to stop someone being 5ft 6.  Autism is built-in.  Be aware that a lot of the 'treatments' are now linked to really, really bad outcomes for the children later on. Even the 'evidence-based' ones you may hear about.  The evidence for some was that it trains the children not to say or show they're in pain any more.  Not good for any child.   A good speech and language therapist can help if a child has difficulty communicating, though.  They can find what works, whether it's speech, technology, sign or otherwise.

It's a beautiful, fascinating world.  Certainly one where there's not enough knowledge, not enough training or support yet for families.  And certainly some young autistic people need a lot of support in their early lives.

But letting them being themselves, wonderfully autistic, (safely, of course), is the right thing.  They will learn, and grow, and get confidence.  Just on a different timeline, perhaps to that of other children.  But every bit as valid, every bit as treasured.  Some will go on to be the world's specialists, and  - yes - have good friends.  Not hundreds, no.  But good.  People who respect them for who they are.  Quite possibly online friends.  (Safely, of course).

Bringing up our own autistic son was an amazing journey.  Whilst I have a lot to say about a few people who didn't make life easy, and a lot to say about the pressure on parents from society...I am so proud of him.  Just so proud.  Just because he's his own fantastic self.

Now an adult, a well respected adviser and trainer....on autism...

Autism. Is your training from the 1940s?

In the 1940s, there was some early information about autism.  Most of it was wrong.  Unfortunately, a lot of it is still in the manuals and training materials, but upgraded in parts to newer wrong information.

We've made such progress with understanding the value of diversity.  Females, LGBT+ people, those from ethnic minorities including the Black and Brown communities.  We know a lot of the prejudice and myth when we see it, for those marvellous groups, yes?  But, for autism, we have breathtaking nonsense coming from some of the bigger charities, I'm afraid.  No easy way to say it, so there it is.

So many myths.  If you're about to receive training, you could treat this as a sort of '1940s training Bingo card'...

About numbers. (No, it's not 1 in 100, it's around 1 in 30, though 1 in 40 isn't a bad guess either).
About 'lack of social skills' (No, the work of the DART team shows ours are different and as effective)
About ability. (No, it's not linked to a low IQ; we were using the wrong IQ tests).
About conduct. (Actually, autistic people are less likely to be criminals than anyone else).
About gender. (No, it's not just males).
About speech. (Most autistic people do learn to speak as children, and some are our best authors, poets and specialists).
About age. (No, it's not just young boys, & no, we don't 'grow out of it', any more than people grow out of being white, or female).
About ethnicity. (No, it's not just white people).
About employment statistics. (No, it's not 16% in full time employment, it's a lot higher than that, but we haven't found that many autistic adults/we force them to hide and not disclose they're autistic).
About 'cost' to society. ( In fact, society benefits greatly from autistic minds, financially and otherwise, and we don't measure someone's worth only in money).
About the need for early intensive expensive therapies or the child will be a 'dribbling wreck' forever (Actually, good research shows that most go on to develop skills quite naturally,  just at a different time.)
About autistic people needing a cure. (No, most are very clear that we don't want one, although personal choice would be respected if there was any such thing as a cure, which there isn't.  It's a natural diversity, not a disease, although a minority who also have other situations/disabilities etc need significant support. In the same way, some females need significant support. Some males, some LGBT people, some People of Colour. We wouldn't dream of suggesting that everyone in those groups was incompetent, yes?)
About autistic people needing to be stopped from focusing on specialist topics. (No, research shows that's often our way to good careers).
About the need for eye contact to be given, in order to achieve in life.  (No, new research shows that even non-autistic people generally don't bother, and it makes no difference at all to friendship chances.  Also, Blind people can't do this, so what's the problem with autistic people not doing it?).
About autistic people being 'the problem' with relationships and social skills.  (No, it's a double empathy problem, where autistic people communicate differently and have a different cultural understanding. Most prejudice comes from untrained non-autistic people).
About a lack of empathy. (No, good research shows this is just a myth).
About a lack of theory-of-mind, i.e. the ability to understand that others have different opinions.  (No, that has been debunked as well. Most gain this just fine as they grow up).

So, how on earth have we ended up with this many myths continuing painfully from one decade to the next, crushing the next set of autistic people, and the next, and the next?

I'm afraid the answer is that too much of the training has been stuck in the 1940s.  Too much is done by non-autistic people.  Often ones who happen to know an autistic person in some way (maybe a relative) but seemingly have never asked them about life.  I mean 'asked' in any communication sense, not just speech.  

Well over a million autistic people in the UK, maybe 2 million - and too often, such trainers have none of them as personal friends, none of them as colleagues.  Isn't that odd?

Such trainers pass on the ancient myths, generation after generation.  They write them down, put them on Powerpoint presentations, and deliver them to you as if they are fact.   Research based in part on materials from the 1940s onwards, which was based largely on watching groups of profoundly disabled young men in a care home, as far back as the 1940s.   As far removed from a balanced view of autism as one can get, in fact.  It's been like basing all of the information on better gender balance in companies by looking at women in a mental hospital in 1930 and saying "This is what all women are like!".  Just bizarre.

Worse still, they often expect you to pay for this.  It might look slick, with excellent graphics, and the trainer might look like they could pose for a fashion magazine .  But...are you really wanting 1940s material?  I wouldn't touch some of it with a proverbial bargepole.

Some have put poor quality training online.  In as little as half an hour, you can achieve a pass in understanding autism....except you're doing no such thing. Most online courses are very poor quality, filled to the brim with the above-mentioned myths, and peppered with photos of a suitably unemployed-looking white bloke, loitering on a park bench somewhere.  As if this is something to do with the average autistic person.

Does it work, all of the Tragedy stuff?  Let's look at the outcomes after enduring decades of this myth-making and misunderstanding from some.

Are autistic people better employed?  No.
Are the autistic people who are in employment better able to disclose that they're autistic, safely?  No.
Do they have safer lives?  No.
Do they have better education?  No.
Do they have better healthcare?  No.
Do they have greater access to arts, culture, faith -  things that bring joy and meaning to life?  No.

I'm going to be quite clear that some places are excellent.  Some people are excellent.  Some trainers are excellent.  Some researchers, parents, teachers and people from all other groups are excellent.  I'm blessed with working with a lot of them.  I'm also going to be clear that yes, some autistic children need a lot of support, and so do a minority of all adults, of any kind, autistic or otherwise.  And of course society needs to ensure they - and their families - get that support. By all means direct such families to the autistic specialists and allies that they need to help them with their young person.

But, generally, the state of training on autism is of low standard and some of it is lacking integrity. 

I've been in this industry a long time, and spent many years as a professional trainer on autism, working nationally and internationally with groups of all kinds.  What I see, and hear, from some of the bigger charities and groups, is very poor.  I won't name names, because that's unprofessional.  But dragging a token autistic person onto a stage to give you a three minute 'and this is something I crayoned when I was five' talk....unpaid of course....well, no.

Do we need to do better than this now?  Oh yes, indeed.

So, how do we do this?

For a start, you need to ensure that your training is authentic:

Ask:  Whose company is this?  Is it led or co-led by autistic people?    Do you want training from people who don't have confidence in autistic people to co-lead?

Who designed and created the training?  Are they qualified to do so, either from lived experience and excellent train-the-trainer skills, or via a professional modern neurodiversity-friendly course?  Are they autistic people, perhaps in partnership with allies?  

Were they paid properly for that, at the same rate as the non-autistic people?  Think about your company's anti-slavery Corporate Social Responsibility statement.  You don't want to be teaming up with groups  who use autistic people as 'slave labour', and I'm afraid some do. Except they call it 'volunteering' (i.e. no offer to pay), or 'work experience' (i.e. no offer to pay).  Or, they pay only a token amount, way below living wage.   We have houses, families, bills to pay.  We need actual money, the same as everyone else.

Who is delivering the training?  Is it autistic specialists, perhaps with allies as well?  I don't mind it just being allies for some courses if they are working firmly as equals with autistic trainers and advisers generally.

If the answers to that are 'no', you might be getting '1940s training', and perhaps perpetuating the awful lives that some autistic people already experience, through no fault of their own.

Insist on authentic, expert training from autistic-led teams and our allies.
Know that 1 in 30 people in companies, professions etc is autistic, and already doing a great job.
Don't force them to spend a lifetime hiding, because of myths.


Thank you.

Research links?  http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html

Autistic Children and Toilets: Misunderstanding the Difficulties

Many autistic children sense the world very differently from how many parents and teachers expect.

Above, an example of how an autistic child may see a room with a toilet and hand basin in it.  A tiled wall, a patterned vinyl floor surface.  Would you put your feet on that floor?  Could you work out what it was?  Could you even reliably find the toilet?

Now let's add in the 'smellscape'.  Perhaps air fresheners.  Toilet cleaners.  Hand soaps.  Wee.  Poo.

Then, let's add in the soundscape.  Noisy pipes.  The jet-engine-like flush.  The deafening smash of wee or poo hitting the water, and the terrifying prospect of freezing water splashing up.

Let's then add in the elements of freezing cold toilet seat, ice cold taps or boiling hot taps, the ice-cold metal of the toilet handle, the taps.  The searing rough surface of the hand towel, or the further deafening roar of a hand drying unit perhaps.  Then, of course, the pain of dragging clothing down in order to use the toilet....coping with the complexities of the toilet paper and what to do with it, where to put it.  Dragging clothing back up again, like someone using sandpaper against your skin.

This can be the most terrifying experience imaginable for a child whose experience of the world is turned up to 'max'.

For others, each noise and smell, texture and feeling is a fascination and a puzzle which needs exploring, and they may seek out those experiences over and over, trying desperately to make sense of them.

Some may experience difficulties with balance and co-ordination, or with internal signalling to say they need a loo until it's too late.  Or with the ability to point or signal that they want the loo.

To their credit, many autistic children endure all of this and actually do use the loo, politely, over and over again, and continue to do so for life.  No-one questions whether it's hell, or whether we could design such spaces in ways less exhausting to use.  So, let us bear in mind that most autistic children do manage to cope with this ridiculous scenario.

How easy it is for some adults to misunderstand why an autistic child may avoid using a toilet.  Some are so desperately afraid of these spaces that they will only wee or poo in a quiet, safe corner.  Often on soft material that disguises the noise.

"They're just animals - they just don't care - this is deliberate challenging behaviour - we must find ways to force them...."  We even have playwrights writing a horrible play which portrays autistic children as animals, using dehumanising puppets and this theme.

Oh my.  No.

Always, always presume competence.  Presume that the child wants to learn.  Always, always show respect and caring.  Take good advice from autistic advisers and our allies, who are experienced and expert.  Many are parents, many have vivid memories of their own of the challenges of such spaces.

If you are designing such a space, take good advice on that design.  Think about minimising the pain and the disorientation.

Instead of assuming that, since it's OK for you, it must be OK for an autistic child...think differently.  Because the answer to all of this isn't the child being forced into that hellish space.  It's about working with them to find answers to each part of that nightmare.  Thinking about making the visual experience understandable.  Minimising the smells.  Minimising the noise.  Using soft towels, soft paper.  Using clothing that doesn't cause terrible pain when it is pulled up or down. 

Work together.  Learn from one another.

Thank you for listening.

Autism: Some Vital Research Links.

Updated February 2026

Autism. Here we are, 100 years on from the work of Sukhareva, and 80 years on from the original misunderstandings in the 1940s.  So, what's changed, in research?  Almost everything.

Firstly, who am I?
I'm autistic, with a fantastic autistic/neurodivergent family.
Four years of Post Graduate study in the field of autism, including a Master's Degree in the topic and an award for the work. http://annsautism.blogspot.com/2023/01/ethics-and-autism-rights-and.html is an informal summary of the work, focusing on whether the alleged 'gold standard' industry for treating autistic people (ABA) appeared to be training its staff on autism, ethics, consent, human rights etc.  I take a Critical Autism Studies approach, and am a fan of  Indigenist research methods, and encourage good outcomes, collaboration, inclusion, and non-violence.

I work with major organisations across the country, was Vice Chair of the All Party Parliamentary Group on Autism's Advisory Board, and have more than two decades of professional experience in various roles.

Example commissioned papers and projects:
Local Government Association paper on autistic people and housing

It's Not Rocket Science report on children & young people in mental health units (CAMHS)

https://www.routledge.com/Improving-Mental-Health-Therapies-for-Autistic-Children-and-Young-People-Promoting-Self-agency-Curiosity-and-Collaboration/Pavlopoulou-Crane-Hurn-Milton/p/book/9781032372525 as a chapter contributor.

Serious work, from and for serious organisations.

I'm passionate about improving the lives of autistic people, and getting excellent training in place for healthcare, education and many other settings.   Sometimes I challenge really poor and damaging practice.  I'm delighted to promote work like https://captapnetwork.wordpress.com/2023/09/19/how-to-talk/ which is a guide on how to talk about autistic people.  It links to a huge amount of research, showing the basis of the excellent advice within it.

So, what's changed, in the world of autism?

Let's start with this lovely thing.  https://link.springer.com/article/10.1007/s10803-021-04890-4
In it, the well respected research team asked 153 families about their autistic children and what they're like.

The results?  Loving, happy, having a zest for life, caring for others, sense of humour.  So many other positives.  The researchers noted the growing number of other studies supporting those strengths and positives, including a study of autistic adults and noting open-mindedness, creativity, love of learning, fairness.  The links below will also take you to research around honesty, integrity, diligence, empathy, a genuinely different social communication system.  Are you confused, because you attended a lecture reading out the myths from the original 1940s version?  Welcome to this very important update.

The old 1940s version of autism has turned out to be based on very poor evidence, and deserves a decent burial.

What's it like, trying to grow up in a world that wants to see you as a fault, because that's what two men said, 80 years ago, after looking at a handful of mostly male, white children with profound support needs?

There has been an assumption that autism is just a fault that needs fixing, a 'risk' that some scientist is going to cure with Potion X.  A relentless negativity and 'tragic deficit' narrative, day after day, year after year, based on now thoroughly debunked research from decades past. A financial 'burden', despite clear evidence that we haven't even found most autistic adults yet, so we have no idea what they're doing for a living.  For all we know,  most of them could be comfortably-financed or even rich.  We've no idea.

New research is happening around how many autistic people there are.  This 2021 study shows a rate of about 1 in 30 boys, for example, in England.  Huge study of 7 million children in total. Fewer girls.  But there is the strong suggestion in the figures that so many areas of England are missing most of the girls from diagnosis.  If we're missing most of them, how do we know what 'autism' is like?  No-one's doing research into autistic girls who haven't even been discovered, after all.

Unusual and often extreme behaviourist approaches have arisen, based on those myths, despite the lack of independent evidence of useful outcomes for the individual, or any actual effect on behaviours of concern.

Autism is regarded by many autistic people as a neurodivergence,  or indeed a minority people.  Certainly a deeply marginalised group who suffer immensely at the hands of some others.  Adding that of course some have multiple conditions and require a lot of support, and that proper support that values and respects all autistic people and their families, fully, is much needed.

This is a quick list of some of the research that I value. I will start with important findings that trying to 'fix' autism so that we're more 'normal' doesn't work & leads to potentially very poor outcomes. If you're looking for more general autism research, including the positives, scroll further down.

https://www.youtube.com/watch?v=1ES9Z1xdWiI&t=319s is a strongly recommended seven minutes from Alexis Quinn, about how the 'gold standard' behaviourist approaches do the exact opposite to what's needed, for so many autistic people.  Powerful content with mention of self harm and suicide.

One of the big myths is that autistic people have 'obsessive interests' that 'interfere with functioning' and 'must be prevented'.  A joy to read this new research on nearly 2000 young autistic individuals, showing that their dedicated interests were a joy to them, rarely interfered, and may lead to useful careers and benefits for them and society.  https://link.springer.com/article/10.1007/s10803-020-04743-6  Amongst the most popular focuses of attention, art, music, animals, reading.  So much for the myths about us all being computer geeks of limited creativity, eh?  Isn't research wonderful.

What about that 'lacks empathy' myth?  The Empathy Quotient, the most popular measure of this alleged 'lack' doesn't actually work.  I wonder how much damage has been done by using these measures that don't actually measure empathy in any meaningful way?  How many autistic people denied diagnoses for caring about others, for example?See https://journals.sagepub.com/doi/abs/10.1177/1073191120964564?journalCode=asma 

https://link.springer.com/article/10.1007/s10803-021-05307-y#Sec18 is a 2021 study showing that the 22 autistic adolescent males showed equal empathy to the nonautistic ones.

https://onlinelibrary.wiley.com/doi/10.1002/aur.3197 is yet another study, this one in 2024, showing autistic people have as much empathy as everyone else (but parents misread it). 

More on empathy later.  Meantime, let's put in the latest lovely findings on criminality.   Yes, autistic people were far less likely to be involved in criminal behaviour, it seems from this well respected team and huge study.   https://journals.sagepub.com/doi/10.1177/13623613221081343

The incorrect belief that we were empty shells, devoid of caring and with no clue how to 'behave' like proper humans,  led to the alleged gold standard of autism handling-techniques, Positive Behaviour Support (PBS).  It alleged to stop all that 'challenging behaviour' we show.  Things like having a dedicated interest, or moving in ways that weren't approved-of.  Anything not-approved-of is termed Challenging Behaviour or a Stereotypy by behaviourist teams, and must be prevented.  

https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/clinical-outcomes-of-staff-training-in-positive-behaviour-support-to-reduce-challenging-behaviour-in-adults-with-intellectual-disability-cluster-randomised-controlled-trial/67FB170576C79140E9725DA51525088C 
Big research study. 3 yrs. 2018. "Staff training in Positive Behaviour Support... did not reduce challenging behaviour. Further research should... endeavour to identify other interventions that can reduce challenging behaviour."

Oh dear.  Next time someone says 'gold standard', refer to the study and ask them what they mean.

Or, this study.  2020.  Randomised trial. Big numbers.  No evidence that PBS works to improve 'behaviour' for those who are autistic and have a learning disability.  Anyone who is paying a fortune to commission this for people needs to have a serious, quiet read, and ask some equally serious, quiet questions of the people selling the stuff to them.
 https://bmcpsychiatry.biomedcentral.com/track/pdf/10.1186/s12888-020-02577-1

More?  OK... https://www.cochrane.org/CD009260/BEHAV_early-intensive-behavioral-intervention-eibi-increasing-functional-behaviors-and-skills-young
That one is the Cochrane Review.  The ultimate independent audit of whether early-interventions such as Applied Behaviour Analysis ('ABA' often now rebranded as Positive Behaviour Support) improve autistic lives.  Conclusion - nope, not proven. Weak evidence of vague improvement after two years of effort, which frankly could be achieved by anyone after two years.  Children grow up.  They learn skills with or without ABA.  This is awkward, isn't it.

https://www.ncbi.nlm.nih.gov/pubmed/31763860 is a 2020 paper from the APA in the US. Comprehensive systematic review. In other words, very serious research indeed, to very high standards.  It looked at many different kinds of 'treatments' for autism. Including this type of intensive behaviourism.  "...when effect estimation was limited to RCT designs and to outcomes for which there was no risk of detection bias, no intervention types showed significant effects on any outcome."  In other words, they haven't been shown to work.  

https://jamanetwork.com/journals/jamapediatrics/article-abstract/2819784 is a 2024 paper looking at evidence for intensive interaction.  Allegedly, the more a child receives, the better the outcomes. This includes  The review team note that there's no particular evidence for this.  They also note that few teams bothered to check for harms from their allegedly-vital intensive interventions.  So, one might ask why autistic children have had to give up their childhoods in order to do endless exhausting 'intensive' therapies.  What will be the short, medium and long terms harms from that?

It's not getting better, is it... on we go...

https://www.altteaching.org/wp-content/uploads/2019/11/TRICARE-Autism-Report.pdf  US Military  - Department of Defense.  Not exactly a group of 'autism activists', eh.  Couldn't find much evidence of anything at all happening when ABA was done to children. " ...The majority of TRICARE beneficiaries (76 percent – parent form) had little to no change in symptom presentation over the course of 12 months of ABA services, with an additional nine percent demonstrating worsening symptoms".If you are paying for ABA or PBS 'treatments' for autistic people, it's wise to be aware of this type of Government level research showing that you might as well be buying the children a lollipop (generalising).  PS, buying a lollipop is not an actual recommendation, to be clear.

Their 2020 Department of Defense report is no different, at https://therapistndc.org/wp-content/uploads/2020/08/Annual-Report-on-Autism-Care-Demonstration-Program-for-FY-2020.pdf?fbclid=IwAR2VRj3ygZ4nfVsgMY4UNFXn6hxB9kuEGxSlWfx9uwaItEhfsz_NmquhtFo which shows no evidence that ABA is doing anything. If anything, they say, it may shows that the children simply get older and naturally learn some skills, as all children do. Pages 23-24 make bracing reading.  

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0270833 is a 2022 studying looking at whether the ABA industry had proven it was worth paying for, in the UK.  It had not.  It also hadn't produced studies that could be relied on, hadn't done follow-up to find out if the alleged 'improvements' continued, and therefore hadn't looked for long term harms.  They could not recommend ABA. They did recommend actually asking some autistic people what helps.  Good plan, eh. 

https://www.journalslibrary.nihr.ac.uk/hta/hta24350#/abstract   2020. Major review of ABA and similar intensive behaviourist approaches, from the National Institute for Health Research, using a top team. Only one longer term study done on early interventions. That study only had 5 females in it. No clear idea what was done to the children, no control group.  The best they could say is that there was limited evidence of something happening, but goodness knows how.  And, not one of the studies bothered checking for harm in any serious way.  Not one.

https://journals.sagepub.com/doi/10.1177/13623613221142408 is a 2022 paper looking at whether ABA worked for young children, over a period of some years.  They found no difference in behaviour between the ones having ABA and related behavioural enforcement, and the ones who didn't.  In other words, they might as well not have bothered making the children do ABA.

https://link.springer.com/article/10.1007/s40617-023-00809-w  is a 2023 paper in which the authors reveal research from ABA's main team members - Registered Behaviour Technicians. 13% reported receiving no initial training.
29% reported receiving no ongoing training when working with clients who showed distress behaviour.
Most concerning,  36% reported their client sustained some type of injury as a result of ABA with them.  This doesn't appear to be reported in standard ABA research.  One wonders why not.  This is allegedly a 'gold standard' approach.  How are those injuries happening, and where is the oversight and ethical scrutiny of this?

https://link.springer.com/article/10.1007/s10864-023-09542-4 is a 2024 paper in which professionals from Occupational Therapy, Psychology, Speech & Language, Teaching, Social Work and other fields talk about trying to work with ABA teams, and what ABA team members were doing.  Their commentary is bracing stuff, and I'll let you look for yourselves.

https://link.springer.com/content/pdf/10.1007/s10803-025-07203-1.pdf is a 2025/6 paper showing that the 'required' 30-40 hrs of ABA a week isn't in fact required at all.  Seems to have, if anything, a negative effect on speed of learning adaptive behaviour and communication, and had no discernible impact on 'dangerous behaviours'. 

https://journals.sagepub.com/doi/epub/10.1177/13623613221128761 is a 2022 paper which looked at nearly 200 pieces of research into 'interventions' done to autistic young people.
Only 1 in every 100 decided to think about testing for any adverse effects from what they were doing.
None thought to ask the autistic young people.

The interventions hadn't even been shown to work, thanks to poor research design.

No, you're not misreading this.  Why does society think this is a normal way to do research on our loved young people?  Discuss.  Meantime....

Useful paper from a philosopher and an ethicist about the lack of ethical integrity involved in normalising autistic children to make them fit better into society's structures, at https://muse.jhu.edu/article/753840/pdf?

Autism isn't a disease, so treating autism itself has always made no sense at all.  I know this takes some thinking about.  But ABA and its pals, always unproven as hypotheses, do worse than a potentially harmless nothing:
https://hennykdotcom.files.wordpress.com/2018/02/aia_evidence-of-increased-ptsd-symptoms-in-autistics-exposed-to-applied-behavior-analysis.pdf
That one is pioneering research around whether behaviour therapies may lead to an increase in trauma symptoms.  Initial research.  It found a potential link.  One of many emerging pieces of research, none of which are a surprise, since ABA requires autistic people to mask being autistic. No different to asking a gay person to mask being gay. Not healthy.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6061115/
Research in that one shows that too many behaviourists are not checking for underlying mental health conditions before applying behavioural 'therapies' to autistic people. Often also failing to note that the person has PTSD, so thinking it's just autism causing the 'behaviours'  and the person is being 'challenging'.  As many behaviourists are unqualified in autism or mental health conditions, (let alone the highly specialist interplay of autism and PTSD), hardly surprising.    There is clear potential for harm.

Are autistic people more likely to suffer incidents that cause PTSD/cPTSD?  Yes.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5980973/  Large numbers are attacked or treated endlessly badly by some non-autistic people.  Deeply concerning, isn't it.  I wonder which group needs 'behaviour control' the most? The autistic people, or those targeting us?

https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2162  is another study showing how many negative life experiences autistic people endure, and the impact on our health and wellbeing.  Perhaps if we sorted out the appalling behaviour of some other people towards us, autistic 'behaviour' (distress) would improve, eh?

https://www.scottishautismconference.org/assets/pdf/Conference_Seminar_Stream_Booklet_170718.pdf
page 23 gives a preview of the research by McGill & Robinson, Lived "Experiences of Applied Behaviour Analysis: Adult Autistic Reflections on Childhood Intervention".  Qualitative, so not meant to be huge numbers of people.  13 autistic adults who had ABA as  children. 10 found it a mostly negative experience, listing 'removal of autistic self' and 'increased vulnerability', for example.

https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0226-4
The research in that one is worrying, frankly.  Cassidy & team noted that if autistic people are having to mask their autism (which most behaviourist approaches teach them to do), their risk of suicide rises. "Camouflaging significantly predicted suicidality in the ASC (autism) group.", to quote the research.   Are we normalising autistic children at the later cost of their lives?  For whose benefit? I leave the questions there.

https://www.liebertpub.com/doi/full/10.1089/aut.2021.0021 a recent (2021) paper on poor mental health outcomes and burnout from forcing autistic people to live totally inauthentic lives, including links between masking and suicide.

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2774847 another powerful 2021 research paper on how we can avoid suicide, and on how masking is leading to exhaustion & poor outcomes.

IQ:  Do a lot of autistic people have a low IQ?  No. For example, https://bmjopen.bmj.com/content/9/8/e029040.full is a useful newer paper showing the results from a whole country (Scotland) during 2011.  At that point, it was around 1 in 7 autistic children who also have an intellectual disability, and that assumes that they were using the right IQ tests.  Arguably, if they used the Raven's IQ tests, they'd find that even fewer had an intellectual disability.  https://www.researchgate.net/publication/318470420_Gender-Specific_Differences_in_Autism_Spectrum_Cognitive_Profiles_WIS_vs_Raven is an article about how we've apparently been measuring autistic IQ incorrectly.  Every autistic person is of equal worth, being clear.

https://onlinelibrary.wiley.com/doi/abs/10.1111/jcpp.12609 is research on autism and using spoken language.  Various myths that huge numbers cannot speak.  In this article in a well regarded Journal, 1470 children of around 10 yrs old.  63 of them could not use more than a handful of words.  They noted that many of the children had good skill levels in other things.  No doubt quite a few can use text, technology of other sorts, sign language etc rather than speech. No doubt some will develop more spoken language at an older age.  It's fine not to use spoken language, if that's a person's choice.   Certainly every single autistic individual needs to find good ways to communicate somehow, and Speech & Language Therapists are often a good source of help and ideas for this.

Some claim that autistic people who do not use spoken language or a computer keyboard cannot possibly communicate using other methods, e.g. pointing to letters on a board.  (AAC)
https://www.nature.com/articles/s41598-020-64553-9?fbclid=IwAR18FIGxt77C65JtUITrNXiqsnMQaSJbzn7gNlRId_oQGEyW5F-toSLWen4 is from the well respected Nature journal, showing that eye tracking technology says yes they can, and do.  So when you hear someone say, "This autistic person cannot use spoken words so it's my job to speak for them", check what they mean.  If the autistic person has truly delegated authority to them to speak, and explained their views to them using their own methods first, great.  If they've decided to speak for them without asking the autistic person, totally not OK (unless a very young child or unconscious/in a coma).  Enable communication.  If you don't know how, find someone who does. Some specialist Speech & Language Therapists may be useful, for example.

What about other difficulties with speaking, and indeed eating and drinking?  Eating disorders and speech/language situations are discussed in this big bit of research (Systematic Review)  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533039/ showing that differences in mouth, tongue, sensory system are behind a lot of this.  Voice tone can also be affected.  Think how many autistic people are accused of being 'rigid' because we can't eat/drink certain things, or 'rude' because we may sound bored or angry.  Are mouth differences behind this?  Quite possibly - maybe even probably.  Rethink assumptions.  Work with a good Occupational Therapist and Speech & Language Therapist to decode possible difficulties and sort out solutions.

Why might autistic people be irritable?  Research showing that there is a huge sleep deficit for so many autistic people. One example here.  If you were tired beyond words, how co-operative would you be?  Restless Leg Syndrome is worth checking for as a possible reason, by the way.
https://journals.sagepub.com/doi/abs/10.1177/0883073819836541

Are autistic people often sad/angry?  Probably not... This 2026 research shows that people tend to misinterpret autistic face expressions, and assume that we are angry/sad, when we are not feeling those emotions.  https://journals.sagepub.com/doi/full/10.1177/13623613251415129

The result can be a lot of lost job opportunities, friendships, etc, a lot of ostracism and isolation, and a lot of escalation of aggression towards autistic people because of the misunderstanding.  It's so important to realise the difference exists, and to check carefully before assuming.

A reason for 'behaviour' in schools?  Teachers who are aggressive and 'cold' towards autistic children.  This research from 2022 shows the clear benefit of autistic children experiencing warm, caring, safe relationships from teachers in schools.  Result - the children settle down.  
https://www.sciencedirect.com/science/article/pii/S1750946722001143  How often are we told that autistic children must be Controlled and Isolated and Ignored, to create good behaviour?  No, those things crush their ability to form good relationships and learn in ways meaningful to them.  All human thriving is underpinned by good safe relationships from adults, demonstrating how to build trust and caring.   The AT-Autism organisation's Synergy programme is well worth exploring for ways in which schools can retrain their teachers and achieve great results with autistic children.  'Intervene' with the adults in schools, not the child.

Another reason for 'behaviour' - physical pain.  New research showing how many autistic people are in chronic pain from various medical commonly co-occurring things including hypermobility, Ehlers Danlos Syndrome. This is an example new study on females who are autistic or have ADHD. More than three-quarters are in chronic pain.  So, how does behaviourist enforcement of compliance help someone whose 'behaviour' is actually from being in pain?  It doesn't.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6804669/

Another reason for 'behaviour' that involves being anxious about changes in routine? ("Restricted and Repetitive Behaviour" or RRBs).  Sensory overwhelm.  I ran a Poll on Twitter, as an indicator for this.  Here it is:

So, crunching the numbers, only about 6 out of every 100 who voted said no, it's not related to my need to keep my sensory 'input' at the right level.  The rest said there either was a definite link, or a possible link.  Want to know how many research papers I read which tell me that 'restricted and repetitive behaviours' are nothing to do with sensory needs?  Mmm?  Too many papers.  Far too many.  Teams just guess, because they can't imagine that being a reason for them.  That's poor science.  Why not ask autistic people?


Want a whole paper full of reasons for behaviour resembling trauma symptoms?  Griffiths, S., Allison, C., Kenny, R., Holt, R., Smith, P., & Baron‐Cohen, S. (2019). The Vulnerability Experiences Quotient (VEQ): A study of vulnerability, mental health and life satisfaction in autistic adults. Autism Research, 12(10), 1516-1528 https://onlinelibrary.wiley.com/doi/pdf/10.1002/aur.2162
 is your starting point.  The list and sheer quantity of traumatic experiences autistic people experience is heartbreaking.

https://onlinelibrary.wiley.com/doi/epdf/10.1002/aur.2306  April 2020, top team looking at autism and trauma, noting that in their study of 59 autistic people, more than 6 in 10 seem to have had PTSD.  The range of traumatic events experienced is pretty horrifying, yet they report that only 1 in 10 autism service providers bothers to check for traumatic events or consider PTSD.  I see a lot of providers who never think beyond assigning an incorrect label of 'personality disorder', without ever considering PTSD.

https://www.frontiersin.org/articles/10.3389/fpsyt.2018.00203/full is also useful in terms of autism and crime.  Much more likely to be victims. No more likely to be criminal, in this study from the Psychiatry journals, looking at 45 autistic adults in Canada, 2018. 

https://link.springer.com/article/10.1007/s10803-019-04119-5 Another autism and crime paper, noting that "A diagnosis of autism was associated with a decreased risk of committing cyber-dependent crime".  Yes, people diagnosed as autistic are less likely to commit cyber-crime.

I'd also strongly recommend Journal of Autism and Developmental Disorders https://doi.org/10.1007/s10803-020-04393-8  for bracing statistics and background on autism and suicide from this top team including Sarah Cassidy.  "This study provides evidence that perceptions of burdensomeness, reduced social belonging and exposure to traumatic life events are significantly associated with lifetime suicidality in autistic adults and addressing these is vital to reduce suicide rates. However, this study also highlights the importance of understanding how these feelings are experienced and communicated by autistic people and ensuring that our current measures and clinical practices capture these. This study also highlights the fact that a model of suicidal behaviour that works for autistic people may need to tailored to reflect distinct experiences, communication and social preferences of autistic people. Public policy should urgently address rates of stigmatising and abusive traumatic experiences of autistic people."

Another potential reason for seemingly-aggressive behaviour, epileptiform (electrical) unusual activity in the brain   https://link.springer.com/article/10.1007/s10803-019-03908-2

"Aggressive behaviours were observed in all patients with epileptiform abnormalities. Conversely, the 85.7% of patients in the no-EEG abnormalities group did not show aggressive behaviours. Statistical analysis confirmed that the epileptiform abnormalities were correlating with a higher incidence of aggressive behaviour or tantrums (p < 0.01)…..88.8% of patients in the epileptiform abnormalities group were experiencing self-harm behaviour..."

Further research is happening, but this is quite a finding.  Could what we think of as 'meltdowns' actually be an electrical storm of some kind, perhaps some unknown form of epilepsy? Could forms of self-harm be related to this?  I leave it here for your contemplation.  Any point punishing people for any sort of epilepsy-related brain event?  Or expecting them to recall what they did, clearly?  Or apologise for it?  No, indeed not.

What about the meltdown myth?  That all autistic people have violent meltdowns?  Nope.



Here, I asked the fine autistic people of Twitter, and nearly 900 responded.   Not formal research, but interesting.  A very clear majority have shutdowns all or most of the time, and very few have meltdowns all or most of the time.    So, it looks as if autistic people may be mostly quiet people who retreat into silence and stillness (shutdown) during brain events, not 'violence' (actually a brain event).  This is embarrassing, given the past assumptions, eh?

Wait, aren't autistic people more violent, on average?  Nope.  More peaceful, perhaps.  Try this.  https://annsautism.blogspot.com/2020/05/autism-and-myths-around-violence.html

Are autistic people more likely to be addicted to alcohol, drugs, internet, etc?  No, seems not.
https://twitter.com/AnnMemmott/status/1205476830083502080 is a starting point.    All from the last few years, large numbers of people. No particular link to the main addiction areas.  Does anyone who is actually addicted to something need the right support?  Absolutely.

https://link.springer.com/article/10.1007/s10803-018-3695-6 looks at autistic sensory difficulties, and notes a strong link between sensory hell and anxiety, to the surprise of no autistic person ever.  It recommends better sensory environments for us.  Good.  I had too many people telling me it was 'rare' for autistic people to struggle with sensory difficulties.  It may have come from the lack of empathy from non-autistic people that we note in the paper by Dr Damian Milton at https://network.autism.org.uk/knowledge/insight-opinion/double-empathy-problem (Double Empathy theory)

Meantime, here's some other modern papers: Remember we're supposed to believe that autism is all deficit, and that autistic people apply pointless and faulty solutions to their lives...see if you agree by the end...

Better hearing and processing of sound, in some autistic people?  Oh yes indeed.  Try this one.  https://usir.salford.ac.uk/id/eprint/56380/1/Davies_Autistic_Listening_paper_2019_v4.pdf https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3945921/  showing autistic children play more fairly with other children.

https://www.sciencedirect.com/science/article/pii/S1750946718300722
In this one, the autistic participants (20 Uni students) were less likely to tell lies for their personal gain than the non-autistic students. (50% rather than 58%, although the researchers didn't like the variation between individuals so decided this wasn't meaningful.  A point of view...).  This was marked as a fail by the researchers also on Not Giving a Long Enough Explanation As To Why Lying Was Wrong, and - later -  suggested we're more honest and more firm with liars because of our rigid rule set and alleged lack of empathy (!).  Charming....  Desperation to prove autistic failure is strong, eh.   If a non-autistic person says no, that's a 'strong character'. If autistic people say no, it's a 'rigid behaviour',  or 'challenging behaviour'  Mmm.

https://www.sciencedirect.com/science/article/pii/S0891422218302531
Above,  autistic children demonstrated excellent background-scanning abilities in classrooms, pointing to a superior ability to use senses to scan for danger.  An evolutionary advantage to have some people in a community who do that, rather than stare at eyeballs much of the time.  Much anecdotal evidence from some autistic people of their sensory superiority saving lives, by spotting danger first. First to smell escaped gas or forest fires. First to hear a predator.  First to spot a structural weakness.  Do some autistic people need ways to tune out oversensitive senses?  Absolutely they do.  Nevertheless, those senses can save lives.

What about the myths of autistic people being two neat categories, "high functioning" and "low functioning", based on their IQ?  Not so.  Try this. There is no binary high-low.  Everyone has their own description of how they function, based on age, other diagnoses and a host of other factors.  Time to drop the harmful high/low labels, which consigned some to being pitied and left to do crayoning in of pictures for life, and others to being hated and denied services for life. Nearly all autistic people are somewhere in the middle of the alleged-extremes.
https://journals.sagepub.com/doi/full/10.1177/1362361319852831

https://www.emerald.com/insight/content/doi/10.1108/AIA-12-2018-0051/full/html Useful and powerful paper discussing autistic people in Black and Asian Minority Ethnic (BAME) communities, and the need to be sensitive to cultural, religious and ethnic factors, as well as the impact of multiple areas of marginalisation & difficulties obtaining diagnosis, especially for girls (thanks to the early myths associating autism with white boys).  https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0209251
Meantime, this new research shows that autistic stimming (repetitive behaviour such as flapping or tapping) doesn't stop exploratory learning.  We also know that it helps regulate and calm individuals, and https://link.springer.com/article/10.1007/s11013-018-9590-y is a lovely paper about the purpose and essentiality of autistic stimming.  Check those 'behaviour plans'.  Unless a stimming behaviour is causing damage to the person or those around them, leave it.

What about Theory of Mind?  (The ability to understand that other people have different thoughts and ideas?).  After all, for decades we've been told autistic people lack this.  Nope.  Look at this.  2019.  Huge piece of research showing the entire thing was seemingly a series of horrible misunderstandings. https://psycnet.apa.org/fulltext/2019-75285-001.html

Do autistic people have empathy, or (even better ) compassion and general practical caring?  Most do, yes.  Here's a sample of responses from a large piece of research by Chris Bonnello (2018) which also looked at results for those autistic people who also had learning difficulties, or who also were non-speaking:

Wanting the article itself, featuring the findings from some 11,000 people, of which over 3000 are autistic?  https://autisticnotweird.com/2018survey/  Enjoy. So much that dispels myths about autism.  Loads of categories of questions here, and our answers.

Want the updated version in 2022 with thousands of answers from autistic people on all kinds of things?  https://autisticnotweird.com/autismsurvey/  including results on ABA from those who experienced ABA. Fair to say they were not fans of it.

Dr Damian Milton's Double Empathy work, and many other very useful papers, can be found at https://www.kent.ac.uk/social-policy-sociology-social-research/people/1419/milton-damian

And a personal 'favourite' from 2012 https://www.ncbi.nlm.nih.gov/pubmed/22958506 in which autistic people were shown to give a good amount to people-related charities ... and the researchers actually presented the data in ways that suggested autistic people didn't give much to people-related charities, thus could be said to not care about people.   Extraordinary, and clearly the opposite of the actual findings.  Let's assume that was an error, yes? <noting that an anti-autism group funded the study...>

https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2130 shows that autistic people tend to share out money more fairly than others, freed from the social bias that leads others to make unfair decisions because they feel a social tie to another person.

https://collabra.org/articles/10.1525/collabra.271/  a 2020 paper showing that people with higher autism scores still do as much to help others.

https://psyarxiv.com/n2mt5/ a useful 2022 paper on autistic strengths, showing, "... autistic adults were more generous than neurotypical participants, especially to socially distant others, such as strangers... Additionally, we extend previous work showing that autistic individuals are less susceptible to framing effects – whether monetary decisions are framed as potential losses or gains – supporting the view of ‘enhanced rationality’ in autism. Our results show that the differences seen in autism, as well as posing certain challenges, can also have prosocial consequences."

Meantime, brilliant new research from Crompton & team showing that autistic people genuinely do speak a different social language, and work very well with other autistic people, collaborating and sharing.  The problems happen when there's one autistic person and one non-autistic person trying to collaborate, because both misunderstand one another.  http://dart.ed.ac.uk/research/nd-iq/

Here's another, showing that same observation that actually we communicate just fine with one another.  It appears to be a horrible misunderstanding between neurotypes, not a 'deficit' on our part.
https://macsphere.mcmaster.ca/bitstream/11375/25433/2/Salt_Mackenzie_2019April_PhD.pdf

Here's another showing that autistic people communicate well with one another and enjoy one another's company (generalising of course) at https://journals.sagepub.com/doi/abs/10.1177/1362361320924906?journalCode=auta

Another?  Sure.  Here's a big one from 2020. Same findings - autistic people get on fine with each other (generalising).  It's looking really bad for that 'they have social deficits' stuff, isn't it.  https://www.frontiersin.org/articles/10.3389/fpsyg.2020.586171/full

Not enough papers yet on autistic social strengths?  Have another:  https://osf.io/preprints/osf/efvbc  Yes, here we are again, with autistic people thriving in each others' company and enjoying their communication together (generalising).  So, where is this deficit?  Challenge DSM-5, please.  Dare to look at new evidence rather than ancient beliefs.  It's what research is supposed to be for.

Remind me why we are forced to abandon what works for us? https://www.liebertpub.com/doi/pdf/10.1089/aut.2018.0035  A paper about autistic strengths.

Whereas https://www.tameri.com/wordpress/autisticme/2018/01/13/autistics-make-others-uncomfortable-instantly/ is around how many non-autistic people form pretty instant unfair negative judgements about autistic people, the moment they meet us, even before we say or do anything.  That's not an 'autism fault'.  That there is a non-autistic fault.

What about those specialised, focused interests that have been described as 'obsessions' and allegedly to be prevented?  https://tandfonline.com/doi/full/10.1080/00131911.2019.1566213 is one of a variety of papers explaining that many autistic children use those specialist subjects as a way to learn, to thrive.  They are essential tools for many of us.

Here's one showing that autistic people are on average better at predicting social psychological phenomena. https://medicalxpress.com/news/2019-09-autism-good-social-psychologists.html

Face recognition difficulties (prosopagnosia or face-blindness):  "The autistic group showed significant evidence of face recognition difficulties"  from this study on face recognition So, not necessarily ignoring you or being 'cold'. Perhaps they don't realise it's you?

https://www.repository.cam.ac.uk/handle/1810/306126 likewise, more than a third of the autistic people in the study had difficulties identifying people from their faces.  It's normally about 1 in 40 people with that difficulty.

What of gender and sexuality?  Hugely varied.  
http://dro.deakin.edu.au/eserv/DU:30089386/george-sexualorientation-2016A.pdf may be helpful in terms of background on sexual orientation, from Dr Rita George.  Other papers listed in there from both George & Stokes.

Important  paper from this team on the impact on multiple areas of marginalisation, for autistic people.  What if you're part of the LGBT+ and autistic communities?  Ashleigh Hillier, Nicholas Gallop, Eva Mendes, Dylan Tellez, Abigail Buckingham, Afreen Nizami & Derek OToole (2019) LGBTQ + and autism spectrum disorder: Experiences and challenges, International Journal of Transgenderism, 

DOI: 10.1080/15532739.2019.1594484  

These are just a few examples of research papers showing positives, and showing autistic people to be generally good, honest, caring citizens, speaking a different (not broken) social language, and learning from specialised focus.  But greatly at risk from some non-autistic people.  And greatly at risk from inappropriate application of therapies that fail to take account of autistic reality, gender, sexuality, ages, personalities, communication methods, motives, PTSD, other co-occurring conditions and needs.

Here we are as we enter the 2020s.  Time to move on from the dreadful language of the 1940s and 1950s, with its misunderstandings, negativity, scaremongering and desperation to control people for being different.

I'd like to see more researchers starting from that good grounding of 'what are autistic people actually like', and working with us, rather than against us.   We have fantastic work being done by  PARC, for example, and Autscape.  
https://participatoryautismresearch.wordpress.com/about/ and http://www.autscape.org/ are your links.  

Read positive, modern materials such as Autism and Asperger Syndrome in Adults, by Dr Luke Beardon, or its companion book about children.

Nearly all do not want a cure. This, the results from asking a huge number of autistic people who are non-speaking, or have a learning disability. (Autistic Not Weird website - link above). If you think we're a 'tragedy', ask yourself why the vast majority are happy being autistic. 


https://www.liebertpub.com/doi/10.1089/aut.2020.0014?fbclid=IwAR2kokur4miUxHGtQ0vrEiT5D8Akoxy8k3-OlFcMTRttpo2pE-TGI_2uSQU&  is a very good article about not using ableist, negative language about autistic people, and which respectful terms are appropriate.

The work I do in teams with organisations is largely about changing the attitudes of the people around us, whilst improving the self esteem of the autistic people.  It proves very successful.  Families looking for those things, and good support from a specialist speech and language therapist/Occupational Therapist, if needed, will be likely to find many joys ahead. One of the most important factors in a positive attitude?  Finding out about autism from autistic people.  Not from people making a living out of normalising us.

Go communicate with the people involved,  finding plenty more autism-positive materials, and ways that actually help autistic people.  Ways involving respect, responsibility, collaboration, partnership and shared journeying together.
Thank you for reading.