Saturday 20 October 2018

Autism - Consent. And about not consenting.

A black and white artwork of two people holding hands.

Content warning for abuse.

In the UK this week, newspaper headlines have detailed the life of a young autistic woman.  She is reported to have a very low IQ.  A Court had decided that she was free to consent to have sex.  It soon became known that she was indeed consenting to sex, and a wide variety of men would turn up to have sex with her.  Some she barely knew, others she didn't seem to know at all.  

Allegedly, she was 'consenting' to this horrific abusive circumstance.  Understandably, concern has been raised and this whole matter is, as I understand it, being reviewed. 

 This was not consent.  This was shameless exploitation of a young adult who was extremely vulnerable.  The capacity for her to have been deeply harmed by this succession of 'opportunists' was there for all to see.  Given her vulnerability, one could argue that stronger words could be used for them.  I shall leave that to the Courts.

I am grateful for the wisdom of Peter T Hughes QC, writing to The Times, 19th October 2018.  I have highlighted part of it in bold.

"Sir, further to your investigation the question should not be whether an individual has the capacity to consent to sexual intercourse but whether that individual has the capacity not to consent.  Only with such capacity does the individual have the freedom of choice."

The capacity not to consent.  That's exactly right.  

In my work as an autism specialist, advising nationally and internationally, I see much planning, thinking and training around 'consent' to all manner of things, and nearly all of it is based around teaching autistic people to say yes.    'Say yes, or you are being defiant.  Say yes, or you are being 'challenging'.  Say yes, or you are not respecting those who know better than you.  Say yes, or people won't like you.'  Paraphrased.

We have a problematic behavioural protocol in place in far too many of our centres where autistic people live or are educated. One saying that any non-compliance can be marked as a 'challenging behaviour' which is to be 'extinguished'.  The individual is taught to say yes to whatever is planned as an 'enrichment activity', otherwise they are not 'accessing the community'.  Often this is framed as 'positive behaviour support'.  In reality, if the individual doesn't comply, they are the not allowed access to things of meaning for them, whether it's hobbies, much needed rituals that are part of autistic life, treats, trips out, anything but basic food, or even access to fresh air and exercise.   I've viewed some of the list of punishments (not phrased that way of course) and been shocked.  

 Saying yes becomes an absolute imperative, to survive 'life inside' in such establishments.

I watched one such 'trainer' online, talking to autistic women.  They had to agree with him.  He was absolutely relentless.  If they disagreed, they were argued with until they left.  If they stood up to him and shouted at him for his bullying behaviour, he'd report them to the social media platform to get them banned for a time.  No-one was allowed to disagree.  He was having a fantastic time.  Less so the autistic women.   Such 'trainers' can get £500,000 an individual a year off the commissioners for services, to train autistic people to comply.   I wish I was joking.  I'm not.

I also wish this situation regarding the young woman was one case.  I fear it is not.  We've done this to a generation of autistic people in too many care settings.  We've never taught them that it is OK to say no.  That saying no is vital. And, as a key part of this, that it is always OK to refuse to consent to sex, or to any other form of intimacy.

This is a t-shirt logo that I value.  On it, the words, "Noncompliance is a social skill".

Arguably, it's the most important social skill of all.

Some autistic people are unable to speak, at times.  Mostly when under stress or afraid.  In the very situations when it may be the most important time to be able to say 'no'.  Are we considering that ability to speak clearly and articulately if someone pressures them into compliance?Plenty are able to communicate clearly and to decide for themselves.  We're not discussing autistic people who clearly have capacity to make their own decisions in this blog.  

To those placed 'in charge' of those autistic lives in care home or other institutional settings, I would say that we need to move away from compliance-training, as if autistic people are dogs.  I cannot think of a worse starting point for humanity.   We need to move to a culture of  integrity, courtesy, respect and thoughtfulness.  A culture where safeguarding and planning means sensible safety, and where Peter Hughes's statement is uppermost in our minds.  A culture where there is access to joy, to beauty, to music, to art, to all that makes life worthwhile - in safe and responsible ways.  And a culture that enables an autistic person to explore relationships  and friendships in happiness and respect.  Yes, some can be free to make an occasional error.  That's part of life.  But never, ever to be left exploited by every passer-by on the street.

Is this person able to say no, and have 'no' respected?  If not, there is no consent.

Sunday 14 October 2018

Irresponsible Information: Autism

Photo and drawing of a woman at a laptop computer, covering her eyes with her hands, looking sad and shocked

Content warning.  I'm going to discuss some really shocking and untrue statements about autism from professionals.  These are ones that I've heard, or been told about, in just one month.  Information so utterly wrong that I barely know where to begin with the actual facts.

First, a report from a well respected professional.  She had been told by an eminent healthcare practitioner that if there is a murder investigation, you should assume the autistic suspects did it.

Second, a report from another well respected professional.  She had been told by a different eminent healthcare practitioner that autistic people have no empathy, because if they did, they would care for their health more effectively.  One cannot begin to even understand the logic of that one...In reality, many autistic people struggle with the sensory pain of self-care such as showers and tooth-brushing, or may be too depressed to look after themselves.  It's nothing to do with empathy.

Thirdly, a parent reporting that a well respected autism charity alleged that autistic people were very likely to be rapists.  This adds to a psychologist having to be diverted by me before alleging that autistic people were more likely to be perverts.  Shockingly inaccurate, and hugely damaging misinformation.

In each case, I've been there with the counter-information to pass on.  But, how irresponsible are such statements...

We know from very good research that autistic people are by a vast majority repeat victims of crime.  Assaulted, defrauded, bullied, mocked, terrorised, impoverished, sometimes quite literally starved near to death to teach them how to 'comply' with instructions from our alleged-betters.  I've seen so much that has been worrying beyond measure.  And of course the result is anxiety, depression, and a huge number hoping to die, to get away from the pain.  A population desperate for better understanding, friendship, caring, opportunity, thriving, art, music, culture, all the things that make life liveable.

We know from very good research that autistic people are generally more moral and less likely to commit crimes than other people.  But, alas, more likely to be 'framed' by actual criminals, and more likely to be misunderstood by the Court systems and wrongly convicted.

I did a lot of research into the 'murder myth'.  I found, for example, that a number of newspapers had assumed that autism is a lack of empathy.  This is not so.  This was some informal research on the empathy levels for autistic people.

So, having assumed that autism  = lack of caring about others, they looked through Police reports for anything saying the murderers didn't care.  Then the papers invented that person being autistic.  I kid you not.  In reality, there was no greater link to autism.

What about the allegation that autistic people are more likely to be perverts?  I tracked that one back through several decades of research papers.  It came from one study, decades ago, on a small group autistic young men in a care home.  And some anecdotal evidence from forensic Psychiatrists, working with criminals who happened to be autistic.  From that, professional after professional just parroted that data, it would appear - passing it on as if it was fact.  It bears no relation whatsoever to most of the 2 million wonderful autistic people of all kinds  in the UK - young, old, all genders, all cultures, all backgrounds and faiths.  Many of them excellent members of the community, honest, diligent and caring.

We had a well respected church publication arguing that autistic people were likely to be stalkers.  When we looked at the research, it was based on a professional misreading one old report, which said autistic people's attempts to start a relationship might be misread as stalking...but that this was a miscommunication between the two people.  Autistic culture is different, and so is autistic communication.  It's nothing to do with stalking behaviour.  Worse still, other research showed that more than a third of young non-autistic people admitted stalking someone, so in fact it's a society-wide thing.  Not autism.

Where do we even start with this nonsense?  We know that autistic people are dying in extraordinary numbers and far too young, by suicide, by lack of access to healthcare, by lack of recognition of intense pain from sensory and social overload in today's busy, noisy, overwhelming environments.  And yet we have a few professionals adding hate and fear to our lives, for absolutely no discernible reason whatsoever.

I work with many excellent fellow professionals nationally.  People who care about facts, and who care about the lives and welfare of our much loved autistic people.  I want to make that clear, because this isn't a statement about 'all professionals'.

Yes, a few people of any kind can be criminals.  Any kind at all.  A few women can be.  A few men can be.  A few people who are 5 ft 10 can be.  In fact, you can take any category of person on the planet, and find that some are criminals.  And of course if someone of any kind is a criminal, they need to be stopped and a way found to keep others safe.

But autism does not 'cause' such criminal behaviour at any greater rate than for anyone else on the planet, and it never has.  

Thank you for listening. 

Saturday 6 October 2018

Autism, Transgender and Avoiding Tragedy

Picture of a young woman sitting down, looking sad.  Behind the picture, the flag used by some of the Transgender communities.

Warning for discussion of suicide.

Long, happy, healthy lives.  It's something we want for all autistic people, I think we can agree?  Yet we know from recent research that the suicide rate for autistic people is huge.

For a discussion of this, see for example which talks about the underlying reasons for this, and includes the deeply concerning statistic that, "
 In a large sample of 374 adults newly diagnosed with.. autism.., 66% had contemplated suicide".   Risk factors included having to disguise autistic identity (camouflaging/masking).  Why hide our autistic identity?  Fear of bullying, ostracism, prejudice, desperation to make friends in a world too eager to see autistic people as 'broken' instead of a minority who use a different communication system and usually have a diffferent sensory system.

What of the large numbers of autistic people who identify as part of the Transgender or non-binary communities?  What is it like for them in a world also often hostile to Trans individuals and those of other minority gender identities?

If you want to do a bit of background reading on those gender terms, I would recommend the glossary at this link
Are there large numbers of autistic people who are gender-diverse?  Yes.

An example graph showing the large proportion of autistic people who identify as a gender minority

We know this from recent research.  For example that by George & Stokes, an example above.  Top bar shows the chosen gender identity of autistic people who were described as as female when born.   Bottom bar shows the gender identity for 'typically developing' (non-autistic) people who were described as female when born.  Blue = still identify as a woman. Other colours - not now identifying as a woman.  That's a big proportion of the autistic people who are not identifying as 'woman'.

What are lives like for autistic people who are part of gender minority groups, though?  Again, we have a growing amount of research on this. is one new article (2018) describing the personal accounts of 22 individuals, and well worth a careful read. is an important new paper by George & Stokes (2018).  It looks at the mental health outcomes from autistic people who are in sexual and gender minority groups, and of non-autistic people.  Big numbers surveyed.   It's not good news.  Let's have a look at some of what they discovered, on the graph below. 

First, what do the abbreviations really mean?  TD = non-autistic.  ASD = autistic.  GDT = gender minority group e.g. Trans, non-binary. (I call this gender-diverse in this blog).

The scale of numbers across the top starts from 0 (extremely good mental health) to 20+ (increasingly poor mental health).
People who are not autistic scored about 7.5 on average. Pretty good mental health on average.
Non-autistic people who are gender-diverse, average score about 16.  Not so good.
Autistic people who are gender diverse, average score about 20-ish.  Really not good.  Perhaps predictably, being a member of more than one minority group means more stress in an often non-accepting society, and thus more mental health difficulty.

A graph showing the mental health stress on different groups of autistic, sexual minority and gender minority groups

Why are there greater mental health stresses on autistic people from gender-minority groups?  To quote from the research paper, 

 "The increased rates of mental health problems in these minority populations are often a consequence of the stigma and marginalisation attached to living outside mainstream sociocultural norms (Meyer 2003). This stigma can lead to what Meyer (2003) refers to as ‘minority stress’. This stress could come from external adverse events, which among other
forms of victimization could include verbal abuse, acts of violence, sexual assault by a known or unknown person, reduced opportunities for employment and medical care,
and harassment from persons in positions of authority (Sandfort et al. 2007)."

Does transition (GCT: hormones, surgery etc to align the body with their gender identity) lead to better outcomes?  A starting point may be this recent paper, looking at results from 697 Trans individuals, which says, "Body-gender congruence and body image satisfaction were higher, and depression and anxiety were lower among individuals who had more extensive GCT compared to those who received less treatment or no treatment at all".

What is certain is that we need to work together, and well, as different communities.  To support one another.  We need to learn about different aspects of gender diversity and autism, and to find really good ways to lessen the stress on autistic gender-minority people.

There is no doubt that individuals who are autistic and are part of gender minority groups are at high risk of very poor outcomes, and major misunderstandings.  Listening carefully to those individuals, and to the best of the charities and groups who offer excellent support and education services, is really important.

What we cannot afford to do is to pretend that gender diversity is nothing to do with autism, and autism is nothing to do with gender diversity.  Too many young lives are at stake.

Thank you for listening.