Thursday, 22 December 2016

Autism, and why I'm a Christian - a Reflection for Church Leaders





As the season of Christmas is upon us, a personal reflection from me on faith.
Why?  Because it's a huge part of my life.  Always has been.
I knew God was there, even before I knew that people were people.  Even before I knew how to use words. 
And, for me, the Christian faith has been the thing that has kept me going in dark times.
We know from research that autistic people are just as likely to be part of faith as anyone else.  Whether it's Christianity, the Jewish faith, Muslim, Hindu, Sikh, Buddhist or otherwise. 
It's hard to explain what a faith relationship with Jesus means to me.  It means that none of these scenarios happened:


When Jesus met with social outcasts, he didn't hurry by, saying, "I don't have any time to deal with you".
When Jesus was approached by Nicodemus, arguably autistic, he didn't tell him to go away because it was too much bother or cost to deal with him.  He explained things, and created the most loyal and faithful friend, right to the end.
When Jesus found Mary Magdalene in his life, he didn't say, "Gee, a woman with money and an unusual past?  Let's distrust her."  He used her gifts, and made her part of the life of that band of followers.
When Jesus encountered disabled people, he didn't say, "Well, it's your own fault.  What do you think I am, social services?"  or "Do you mind not being here - we have real work to do and you're in the way of it".   He loved, he ask them what they wanted for themselves, he healed their lives in ways that respected those wishes, he brought them back into relationship and community.  It was never, ever about walking by, pretending it was all too problematic, pretending that 'people like that' are too much bother or not the right sort.


Jesus said that we were to be included.  Brought into the banquet.  Actively sought.  A full banquet.  Not a crumb from the leftovers, not an afterthought.  Not in a different room, somewhere else.


Even as I'm writing this, I'm in tears of relief, just thinking about that degree of love.  Because it's not something we get a lot of.  Yes, there are lovely exceptions...but....
We mostly get to be the 'cost', the 'issue', the 'problem', in modern church, I'm afraid.  Well, we do, don't we.   The person leaders hurry past, , so they are not inconvenienced by having to meet us, having to encounter us, having to speak with us.


I yearn for the day when perhaps, just perhaps, I get to meet our Lord, and fall at his feet, knowing that I'm loved.


May the love of God, and of Jesus, be amongst us all this Christmas.

Saturday, 19 November 2016

Autism: 1 in 30. Missing Most Females.





Autism.  1 in 30.


Yes, in the UK, we are still using an 'official' statistic of 1 in 100.   It's out of date.


Normally at this stage, various of my professional colleagues will roll their eyes and start muttering about 'reliable data'.  I'm very much in favour of reliable data.  If only we had some.


Instead, let's have a look at some data from the USA.  Recently, researchers asked thousands of parents if a Doctor had ever said that their child is autistic.  1 in 45 said yes.  Of these 1 in 45 children, 81% are male.


At this stage, various of my professional colleagues will no doubt be thinking, "Well that's not 1 in 30, is it, Ann."

Aha.  Isn't it?

"81% are male".  Why is that?

We know that we are missing most of the autistic females.  We know that there's a variety of reasons for this.  For example...



We know that some GPs simply do not realise that females can be autistic, so do not refer on.
We know that some diagnostic professionals do not realise that females can be autistic, so do not diagnose...but instead label with things the person isn't.  (For example borderline personality disorder, schizophrenia, anxiety, OCD).   Or only notice other things that really are there too, and fail to notice that there is also autism.
We know that some diagnostic methods use conversational questions that assume the interviewee is male.  I've had plenty of odd conversations about 'Do you like trains', and 'What will happen to this set of engineering equipment if we do this to it' and, "Have you ever collected toy cars".  That will only identify females with more-male interests, arguably.
We know that autistic females (and quite a few males) do not present as autistic.

We know that autistic females (and quite a few males) may not show 'challenging behaviour'.  In other words, distress behaviour visible to others.  They are more likely to internalise it or disguise it. In a recent poll in the autism social media, around 70% of autistic people said they are more likely to 'shut down' than have a meltdown.  Looking for meltdowns?  You could be missing 70% of us.
We know that autistic females are more likely to have standard female hobbies and interests - but take them to extremes of passionate focus.
We know that autistic females are more likely to have friends (or think they have friends...).
We know that a lot of autistic females will fake eye contact, and will have learned to copy face expression and body language.  So will some males, of course.



We also know that a huge number of autistic individuals are lesbian, gay, bisexual, or transgender, or non-binary or genderqueer or many other gender identities.  Research on this is very sparse.  So our knowledge of gender identity, sexual identity and autism is woeful.  For example, diagnostic teams may spot 'butch' lesbian autistic women.  What about the 'femme' ones?  Different cultural styles and norms might mean that some are missed from diagnosis.


There are so many factors that mean we are missing arguably most autistic females from diagnosis.


I can only offer anecdotal evidence, as someone who trains diagnostic professionals and advises nationally on this subject... but is not a diagnostic professional.  I've known a simply massive number of females over the decades.  In schools, workplaces, faith settings, clubs, venues, etc.   Nearly all of the autistic ones are as yet undiagnosed.  Quite a few don't even realise they're autistic.  'After all, autism looks like a 'badly behaved boy', doesn't it... 'Well, no, it doesn't.  That's not even 10% of what autism could look like.  Autism doesn't look like anything at all.  It's not a look.  It's  effectively a brain design. You can't see it from just looking.

So, let's consider what happens if it's actually 50:50 males and females.
1 in 45 is autistic.
81% are boys.

<does bit of maths>
If it's actually equal male/female, then it's about 1 in 28 in total.  Call it 1 in 30.



When I say there's around 2 million autistic people in the UK, I do mean it.


The picture at the top says a lot about how it feels, to be missed from diagnosis.  A woman, sitting alone, despite a crowd of others round her.  How many end up in terrible difficulties because of that missed or mistaken diagnostic path?

We need to do better than this, collectively.  Very glad to be working with Parliamentarians and professionals across the country, to get good thinking in place.

Want good information on this?  Look at the work being done by Autism Oxford UK and their training teams, Carly Jones, Limpsfield School, Baroness Hollins, Cheryl Gillan MP, the National Autistic Society conferences, ReachoutASC and so many other excellent people and groups.  I wish I could name you all in the space we have here.

All autistic people deserve a society that recognises and respects autism, in all its wonderful diversity.





http://www.cdc.gov/nchs/data/nhsr/nhsr087.pdf  is the link to that data.





Monday, 14 November 2016

Can autistic people be 'pillars of society'?



A "pillar of society" is someone who is highly respected and does a good job in society.
After decades of some groups pretending that all autistic people are a disaster, it's a role we have often been denied. "Oh they're all dangerous and unreliable".  Hmm.  You know that you're hearing prejudice when people 'other' two million people in the UK in such a way.


Yes, it is about two million.  Yes, I know the official statistic is 1 in 100, which is less than two million.  I'm using the national figures in the US, where a careful look showed it's about 1 in 30 boys.  And I'm aware that we are missing nearly all of the females from diagnosis at the moment.  My professional judgement is that we'll find it's 1 in 30 females also.  1 in 30 of the UK population?  That's around two million.  Only 1.6% of those are what we used to call 'real autism', e.g. also with a severe learning disability, speech and communication difficulties, and living in a care home setting of some kind.


So, let's look at the situation with an example or two of the other 98%+.
Person 1 - a highly respected professional running a national practice for the best part of 30 years.  Autistic.
Person 2 - a member of the teaching team working a school as an autism specialist for years.  Autistic.
Person 3 - a national specialist in project management.  Autistic.
Person 4 - a top researcher in a major University.  Autistic.
Person 5 - a senior faith leader, working patiently and carefully for decades.  Autistic.
Person 6...


I could go on for a few pages.  These are just a few of the autistic people I know and work with.  And those whose lives involve art, poetry, music, sculpture, prayer, care work.  Also, of course, those who are not working at present, or cannot work.  Each is a person of unique worth, irreplaceable, loved for who they are.


Me?  I run and own a national professional practice and have done for 16 years.  I'm a wife, a mum, a friend.  I've been in a lovely church for many years now, enjoying serving and helping to lead informal worship for small groups.   I've served as an adviser to some 200 MPs and Peer in the Houses of Parliament for more than five years and counting.   I advise or train organisations across the UK, including the BBC, Royal College of Psychiatrists, University of Oxford Colleges, schools, parent groups, children's centres, social workers, and any number of others.


And I'm autistic.  No, not 'mildly'.  I started off non-verbal.  I have a wide range of sensory difficulties, routine needs, etc.  I cannot see body language.  I'm faceblind.  I struggle with eye contact.  I collect maps and data.  I 'shutdown' and can struggle with tasks that should be really easy.  I learned to work with my strengths.  That's what made a difference.  No therapy.  No cure.


Every time I see these terrible scaremongering efforts...where people take one or two really complex situations and pretend we're all like that, forever....well, it makes me sad.


It makes me sad... because every time we do this ridiculous, 'They are all a tragedy unless you spend a fortune on this 'cure'  thing, we make life harder for all of us.  All of us struggle then to be taken seriously. All of us get distrusted.  All of us get feared. All of us face a darker future.




It makes our lives that much harder.  We may have to fight for years to get access to the simplest things, because some people are then afraid of including us.  No, seriously.  It gets more difficult to be listened to.  It can take years to access meetings, because, after all, 'those autistic people are dribbling flapping things - why would we want one in this meeting'.  Hmm.  I'm quoting, there.   I'm also quoting when I say, "Why would we include autistic people?  It takes too long to include them too."   Fascinating what's said, isn't it.

It has been so exhausting for me, as a professional, that I have had to take some very wise steps to safeguard my health and wellbeing, frankly.  I tend to only work now with groups that take me and my autism needs seriously, and take me seriously as a professional.  I advise that also for my other splendid autistic colleagues across the country.   I'm fortunate to work with a number of really excellent groups who have realised how easy it is to get people like me to be productive and give really good advice.   I'm also challenged by a few who make it ridiculously difficult, then try to blame me for it.



All autistic people need things adapted to make life more doable for us.  In the same way that people who are Deaf or hearing impaired will need to adapt communication and may need hearing aids, loops, etc. 


People like me are the ones who fight alongside others for children to have really good support, really good laws to protect them.  We fight for families to have good help, good respite.  We fight for good education and good employment opportunities.   The moment we are 'othered', demonised, belittled in the eyes of others, we can do none of that.


I'd urge people not to generalise about autism.  I'd urge people to be responsible in their use of language.  I'd urge more fellow non-autistic autism professionals to get their noses out of their research papers long enough to meet a wider selection of us, as people, as friends.  Not as test subjects or 'patients'.   Believe you me, we know when we are being treated as a patient rather than as a fellow professional. 


Sometimes, of course, it's genuine fear that stops some fellow professionals engaging with us; they may have never met an actual autistic person before.  I kid you not.  Some of the autism degrees never require people to have met a single autistic individual. Do be careful who you pick as your 'expert', good people. There's lots of excellent ones out there.  And quite a few who hide behind things when near us, in case we speak to them...which is quite amusing in a way.


Especially, I'd urge us to ask about the creativity of autism. The spirituality.  The caring.  The love.  The honour.  The respect.   The passion.  The determination.  The honesty.  The dedication  The search for fairness and social justice.


If we are not prepared to look for those things, then we are missing nearly all autistic people, in a quest to prove a point that was never worth making.


No autistic person is helped by being portrayed as a tragedy. Or as an epidemic.  Or as a monster in need of 'dog-training'. 

I work for a world where every autistic person is allowed to thrive, grow and love as themselves.  Exploring their own interests, their own passions, their own way of communicating, their own faith or spirituality, their own emotions, their own relationships and friendships. Safely and responsibly, of course.  As is the case for all other human beings.



Thank you for listening.

Sunday, 16 October 2016

"My child is autistic but has no sensory issues"


How a medical examination room looks to me




Over many years, I have talked with many parents about their offspring.  Some will say to me that their child is nothing like me.  Quite often, the statement, "...my child cannot talk, and has no sensory issues whatsoever".


Up to age 10, I still couldn't use language for communication.  I could repeat words or short phrases, but didn't know that people were people...so couldn't guess what this was for.  It was a noise.

At age 20, I was still struggling to say things.  I disguised it by being the quiet one at the back, always.  If I had enough time to think, I could manage a short conversation.  But it would be such a struggle.  Mostly I hoped to find people who did all the talking.

Even now, I can go non-verbal. 70% of non-verbal autistic children eventually speak.  The rest communicate differently.  Differently is fine.  Many of us are partly-verbal.

Verbal ability is no longer part of the autism diagnosis in the most recent diagnostic criteria (DSM 5).  Not many people know that. A lack of speech is a speech/language condition, not autism.  We may have both things.



Let's go on to the sensory issues.


I was a very passive child.  Very compliant.  I would go into shopping centres.  I would wear what I was given.  I would go where I was sent.  I would do whatever the activity was, as best I could.  OK, I really couldn't do ballet, or Brownies groups, or Sunday School at church.  But mostly I could do things.  I'd get on buses.  I'd go to school.   To the outside world, it would look exactly like I had no sensory issues at all.  None. In fact, I didn't even get noticed as autistic.  I did not know that the world was supposed to be pain-free.


Other autistic professionals nationally say similar things.  For years, they could not recognise their own sensory issues. Some have hyposensitivity to sensory stuff, of course, and therefore absolutely love bright, loud places etc.  So much so that they can barely be removed from them. 


Each of the senses has its own scale of hyper/hypo-sensitivity. Smell, heat, cold, pressure, sight, hearing, balance, taste, texture, hunger, thirst, whether a loo is needed, whether something hurts.


Why do so many sensory processing differences go unnoticed?  Because if the world has always hurt, you don't know that it is not supposed to hurt.  If it has always been exhausting, you don't know that this isn't normal.  If someone is hyposensitive to internal pain, they may not realise they are even in pain.  I thought I was just rubbish at coping with it, compared to everyone else.  So some of us coped by being passive.  Some of us coped by being determined to just push through the pain and fear, every day.  I did the former.  In adult life, I do as much as I can of the latter. I wish I didn't have to.


If someone is able to confidently communicate that they have no unusual sensory issues,  that's good.  There are bound to be a few people who truly have no sensory processing differences.   The latest study on this, "Brief Report: DSM-5 Sensory Behaviours in Children With and Without an Autism Spectrum Disorder", (Dido Green et al, Journal of Autism and Developmental Disorders 2016) shows 92% of autistic people have sensory processing difficulties of some kind.  Huge numbers struggle with background noise.  Nearly 20% can only cope with bright artificial lighting by hiding their eyes from it.  35% struggle to eat because of sensory difficulties. 35% are in such pain/overload from basic daily grooming (hair brushing, showering etc) that they are fighting not to have it done.

Eventually, for many, ignoring pain takes a toll on us.  Eventually, we are so exhausted, so worn down, so damaged, that we can't cope any more.  We see rocketing levels of anxiety, depression, ill health.



For the parents that claim to know the inner world of their child, I'd say 'be careful what you think you know'.  No-one can ever confidently look at that list of senses, and declare for sure what someone else's sensory world is like. 


Autism is an invisible thing.  Others can't see it, and others don't know what our inner experience is like, at all.  For some, sensory issues are what prevent communication, and cause distress behaviours.    That system punishes the courageous and the quiet amongst us. We are expected to endure things.

Most parents truly want to do the best for their child.  I never doubt that.  My own best advice to parents is to not guess on behalf of their offspring.  It's fine just to say "I do not know".  Then, if there are mystery behaviours, perhaps find a good autistic professional who can decode sensory responses that may be missed by parents, teachers and non-autistic professionals.



Thank you for listening.

Friday, 14 October 2016

Church: Ten Top Tips for Autism


Ten Top Tips for Including Friends on the Autism Spectrum

 

We know that churches who welcome autistic people are often the ones who welcome everyone.  Those churches grow at four times the rate of others, on average. 

Why the growth?  Because things that help the 1 in 30 on the autism spectrum will help nearly everyone else too, at almost no cost.  Also, because that warm welcome is the thing that makes the biggest difference.

 

1.         Autism summarised?  Generalising - autism is a brain design from birth. Males, female, young, old – so, it could be anyone.  Most are ‘invisible’ – you won’t realise they’re autistic. It’s nothing to do with ‘bad behaviour’ and ‘not caring’. Those were myths. Our brains are built for accuracy and specialist knowledge.  Not many are good at common sense or interpreting body language/voice tone.  People need to be really clear about what they mean, using words or visual support such as pictures/diagrams. Our brains take in too much info from sight, sound, smells, etc – it can be totally overwhelming.  Most need to rest in quietness a while to recover.  Can seem rude, but it’s not rudeness; it’s social ‘clumsiness’ and a need to be very accurate.  Some of us find it hard to recognise people from their faces. Most are wonderful, honest, caring friends, often gentle social campaigners.  Some also have other disabilities/conditions such as learning difficulties.

2.         Ask us what might help.  Be genuinely welcoming and including of us please.  Just tolerating us being in the space is hugely demoralising for us.  We have gifts to offer God, and want to be friends too.

3.         Check the lights in each room, especially fluorescent ones – any flickering ones?  Please replace them.  Fluorescent lights are like a strobe light to a good number of us.

4.         Noise levels.  Is there anything involving sudden loud noise in today’s service/meeting?  Please let us know, where possible. Noise cancelling headphones can help.  Quite cheap to buy.  Or earplugs.

5.         The building.  Advance info  - where is the service/event, where’s the parking, where’s the nearest loo, where can I sit?  This is vital for most, so we can plan how to avoid sensory hazards. A simple website or blog can help. Or a quick email.

6.         The Order of service – really clear instructions help. Everyone else might know that we stand during prayer A and sit immediately afterwards, but autistic people aren’t good at copying other people and can feel hugely embarrassed when we’re the only ones still standing.  Please say, or write it in the service sheet perhaps.

7.         We are very literal, and our minds may see pictures, not words.  If you need to use complicated language, please explain somehow also.  Some of us use iPads or similar to help access useful tips and help us communicate.  Be aware. Be Clear and Accurate.  If you say you’ll do something, please do it.  Or let us know that you can’t

8.         Physical events e.g. shaking hands?  Hugging?   Please warn us what will happen, and ask consent.  Don’t think we’re rude if we can’t do it because of sensory pain.  Many of us love a safe hug from a trusted person in an event, but  go slowly and with consent.

9.         Rest area – somewhere quiet to go if we need to, please.  Or don’t worry if we wander outside for a while. The overload from socialising and sensory input causes real brain overheating, and it needs to find time to cool its wiring again.

10.      Socialising.  Be aware we find it difficult and exhausting as we cannot ‘see’ or hear you that well.  Our body language can be different to yours, and we may not make eye contact.  Please don’t think we’re rude. Sitting next to us is better than facing us, generally.

 

Enjoy! J    More info? 

Read http://autismandchristianity.org/ as a starting point

Sunday, 18 September 2016

Autism: Body Autonomy for girls and women






This is an important subject.  I'm seeing a lot of autism colleagues start to talk about it.  We need to talk more about it.


You see, if you are disabled, somehow you lose some of the right to decide who does what with your body.

Friends who are wheelchair users say that fairly often, people will push their chair for them, without permission.  They will also pat them on the head.  Carers may turn up and treat them as a job, not a person.  Dignity, gone.  Personal space, gone.  Freedom of choice, gone.  Rough handling, hardly a cheery word.  An assumption that they all have a low IQ and no speech.



The same is true for a good few autistic people.  Some of the therapies are designed to take all control of our bodies away from us. 
Want to move your hands so that you can sense where they are, in relation to things?  No.
Want to move round the room so you can find out its boundaries in the sensory 'fog' around you?  No.

Want to choose where to look, so you are not overwhelmed by social input?  No, you can look into someone's eyes or be punished if you don't.
Want to decide to wear clothing that isn't searingly painful on the skin?  No.
Want to express the same degree of anger as a non-autistic person?  You can't.  It's deemed 'challenging behaviour' if you're autistic, and you may be wrestled to the ground or have your arms pinned painfully.  You may be force-hugged or have your arms grabbed.  no matter how much it hurts.
People come up to you and think it's OK to move your body to where they want it, without permission.  To do things to you, without permission.   You're not allowed to say no, because you're autistic, you see.


And that constant training that we're not allowed to say no...it's soul-destroying.   It's dehumanising.   It's a total lack of body autonomy.  A total lack of respect for us as human beings of equal worth to others.
We know the statistics for how many autistic women go on to be sexually assaulted or raped.  The figures are horrifying.

It's equally important that boys are taught safe boundaries for themselves, of course.

Some autistic people are very clear on their boundaries, and very assertive.



Others need people to be aware of vulnerabilities.


So, what I teach is a simple list of things to check, in any non-emergency situation:


"Do I, as a non-autistic person, have the right to tell you, as an autistic person, what to do with your body? Or to make physical contact with you to make you do something?
Where is the power in this relationship?  Am I about to misuse my authority over you?  Am I stronger than you, faster, bigger, in a position of power over you, able to use words to win any argument with you?
Is my decision fair?
Did I explain it to you?
Did I give you a chance to explain your own reasons to me?  Either in words, or in the other communication methods you use?
Did I listen with respect, to your words or your other communication methods?
Did we agree between us a way forward, rather than me impose one on you?
Am I using any physical contact with you in a consensual way?
Am I being respectful of your body, your ability to say no at any stage?

Would I do this thing to a non-autistic person?  So what gives me the right to impose it on you?"




There is nothing better, for some of us, sometimes, than a cheery hug agreed between loving family or friends.  Let us decide if this is something we want.  Don't impose it.


It's good sometimes for some of us to allow a genuine, consensual demonstration of something... by guiding our hand to learn a new skill of art or music etc - done safely and properly.  Yes, a therapist is checked and qualified to know what's appropriate and safe to achieve a task.  That's not the issue.  The issue is having it done to us without consent.

There is nothing lonelier than being the only one not hugged, because others are too afraid to go near us.  This is an important point.  Good safeguarding is nothing at all to do with everyone being too afraid to go near one another, under any circumstances.  That becomes the opposite sort of safeguarding problem, where people die of loneliness and the lack of kind human experience.  People who are isolated and lonely live far fewer years, on average.   The 'middle ground' is what we are looking for here.
But...there is nothing scarier than someone arriving into our personal space, without consent...., and doing weird things to us also without consent...then making out that they are a personal saviour of all autistic-kind for their Generous Contribution.  Knickers to that.  To use a phrase. 


We are not your ticket to heaven or a way to get an Honour for your Saintly Behaviour towards us.  We're people.  We may communicate differently and have different needs, but we are not 'less' than you.

Autistic young people need to know that they are able to say no.  That their body belongs to them, not to other people.  And that others are watchful for those who have little regard for these realities.





Teach your young people when it's OK to say no.  Demonstrate respectful boundaries and safe cheery human relationships.  Learn about how we demonstrate those relationships ourselves; we use a different communication system to that of other people.  Ours is not a broken version of yours; ours is genuinely different.


In autistic groups, we don't use eye contact, because we are respecting one another.
We don't face one another to talk, because we are respecting one another.
We don't often move one another's possessions, but play respectfully with our own, alongside others.
We don't overload the other autistic person with 'small talk', because we know that it will overheat their brain wiring.
We don't usually need to say 'I love you' in words, because we demonstrate it with respectful behaviour and wanting to be with someone.  Ours tends to be a non-verbal system.



It's unfortunate that all of this got mistaken for, 'Poor dears don't understand human relationships'.
To us, your non-autistic way of communicating is often rude and disrespectful of us.




Challenge people who do not respect our boundaries
Challenge people who use negative and belittling terms for us.


Thank you for learning about us and honouring us in that.
We're lovely people, most of us.  I am honoured to know so many very kind, thoughtful, empathetic, generous and caring autistic friends and colleagues.
What I want is a safer world for our own children.  They need to grow up knowing that it is OK to say...




No.






Friday, 16 September 2016

Autism Safeguarding - Important Checklist re Behaviour Therapies

I have safeguarding training to the same level as Social Services.  I am also a national speaker at safeguarding conferences, and advise churches and organisations nationally on autism.  I'm also autistic.  

I am concerned that some groups are taking autism safeguarding advice from unusual and sometimes inappropriate sources.

In some cases, it's an equivalent of taking safeguarding advice on (say) LGBTQ teenagers from a LGBTQ 'gay cure group'.  Are you are taking your main advice from a group that has no actually-autistic advisers as part of it?  Does the group use originals forms of Positive Behaviour Support or Applied Behaviour Analysis?   Read on.

Autism is a neurodiversity - a natural part of human diversity, not a mental health condition nor disease.  Some 'therapeutic organisations' and care-home providers are jolly powerful groups.  Groups who get themselves into a position where they can effectively silence all actually-autistic voices.  They can then promote only their own therapeutic approaches, and control 100% of the discussion around appropriate safeguarding.  Some of those approaches, done by some of the practitioners, are of deep concern within the autistic communities.  Some are fine.  If you're not an autism expert, you won't know the difference.

Always, always work alongside autistic experts.  There are many of us. We know the difference.

If you are uncomfortable about the way an autistic person is being treated or handled, you should of course use your normal safeguarding process and ask for good advice from the right people.  These notes are not an attempt to override these. They are a way of helping people to think clearly.

Autistic people often have great difficulties with being touched unexpectedly.  It causes intense pain for a number of us. 

A few people are predators, who rely on getting good access to a good number of autistic people.  Such autistic individuals may be a 'perfect victim'.  Too often, autistic young people are trained using methods that teach them they have absolutely no body autonomy.  Some methods teach them they simply must obey non-autistic people at all costs.  The therapies named above are known as compliance-based therapies.  These often use psychology to 'extinguish' any behaviour the therapist deems unsuited to the therapist's/parent's end goals.  Quite often, it is a behaviour that is a natural, important and harmless adaptive behaviour by the autistic individual or not.  Some such therapists, of course, will be respectful, but those ABA and PBS therapies are not the therapy of choice by autistic people (with a very few exceptions).  PBS has no proper research to show that it is appropriate for autism.  It is ABA with some other things included.  (Some therapists will claim that it isn't.  I assume ignorance, in that case.  It's the same basic courses, with the same books and materials, and the same techniques.  The end qualifications are interchangeable on CVs.  Look for my blog on this.

Autistic people in many such 'therapies'  don't get to say no.   Saying no is deemed a 'challenging behaviour'.  Flapping hands is a challenging behaviour. (It isn't - it's an adaptive behaviour so that we know where our bodies are, or so can regulate anxiety, for example).   Failure to make (for us) painful eye contact is a challenging behaviour.  Needing to use touch  - to work out what an object is  - may be deemed challenging behaviour.  The therapies use checklists of how much of this 'challenging behaviour' they have managed to extinguish.. and then declare that the therapy is a success.  "Evidence - based".  Discuss.   Here's some background reading:     https://sociallyanxiousadvocate.wordpress.com/2015/05/22/why-i-left-aba/


As we know, abusive people rarely go straight for a major event.  They spend a long time getting the person to feel more and more comfortable with touch and being controlled.  More and more comfortable with the person getting closer and closer, and using more and more personal ways of doing so.  Repeat 'grooming'. Often in front of others, to say, "No, this is OK - look, no-one's worried by this'.  Sitting on laps, huggy stuff, pulling the person about without consent. Manipulating them into doing what the person wants.  Young people who have been through compliance training may comply without question. 

What happens if someone raises a concern?  An abuser has a standard checklist of things they use to keep suspicion away from themselves.

1)  "I am obviously an expert because I've been doing this forever and have given myself a qualification in it".  Immediately putting the other person in doubt of whether in fact they have just misunderstood what real expertise looks like.
2) "Autistic people need this kind of touch".  Do they?  It's always OK to ask a respectable autism charity such as National Autistic Society, or safeguarding experts.  No-one genuine will try to stop you doing so.
3) A claim that autistic people who can speak are not 'real autistic people', or are unstable.  "Real autism means that someone cannot speak and has a low IQ.  Without our therapy, they would be drooling in a corner all their lives, honest guv'.  Once you have convinced the onlookers that other autistic people are liars, or unstable, whatever concerns they raise can be safely ignored.
4) A claim that autistic people who can speak are manipulative, and out to cause trouble for people.  Again, a way to ensure that whatever concerns they raise are ignored.   Our behaviour can be misunderstood sometimes by others, but that's not 'manipulation'.
5) A claim that autistic people who can speak are incompetent.  Not real experts.   This is another way to ensure that concerns are ignored.  In fact, we're the main experts in autism.  Autistic professionals are the ones who teach the non-autistic experts about autism, including the latest information for diagnosis.
6) The 'Famous Person Gambit'.  'Look how famous I am.  Here's pictures of me with really powerful people.  Here are my awards.  I must be OK'.
7) The 'teaching of the new technique' to others.  Best way to hide an inappropriate behaviour is to make yourself the self appointed 'expert', and teach it to others.  Then, you can say, "Oh but we all use this method". 
8) Claiming that autistic people don't know fact from fiction.  "Poor dears, they get confused".  We're some of the best witnesses on the planet.  It's another way of keeping people away from realities.
9) "I have an autistic relative, therefore of course I am an expert, and safe".  There is no evidence that having an autistic relative stops a predator.  
10) "But they enjoy it!  There are no complaints".  If you have never known anything different to people handling your body without your consent, you think it's normal.  Some very concerning therapies actually teach the young person to smile at all costs and say how happy they are.  Any negative behaviour is deemed 'challenging', and 'extinguished' using psychological techniques.  No, really.
11) Abusive language about autistic people.  "People like that..." "They have no understanding of manners" "They are a tragedy".  That kind of thinking indicates, "These aren't really humans - they are just objects to pity".  No good thing ever came from that kind of thinking.  

The autistic suicide rates are sky high (nine times higher than for non-autistic people), believed to be because of relentless negativity about us and being forced to do things against our will, in environments that are physically painful for us.  There is a huge risk of suicide in autistic communities.  We need to be very aware that a lot of these supposedly excellent therapies have caused grave difficulties for the people they allege to help.  Some of course are good.

If you have any concerns, ask for help from your safeguarding specialists.  Find out which autistic person is working with your safeguarding team.

Remember the Jimmy Savile case.  He was famous and did lots of Good Work.  And look what happened.  Think about all the other very famous people who got away with it, because they were very famous, very well connected.  Everyone agreed they could be trusted, because everyone else agreed it too.  Very skilled at particular things.  Very clever at what they did, and how.  Charming, plausible, friendly, cheerful.  

Yes, it's very embarrassing and awful to be duped by predators.  But it's what they do.  And it's very human to believe them.  Autism therapy and care is often huge money.  It attracts callous profiteers as well as abusers, amongst the good people.

There are of course a large number of excellent, respectful people working with autistic individuals.  I'm going to re-state that, because another of the diverting-techniques is to say, "Oh those autistic people are so negative - they catastrophise everything/they're paranoid".  Watch out for that gambit too. Don't fall for it.

Look for people who work consensually with the person, at their own pace.  In safe settings.  With good training.  In open ways.  Ways that are always open to query and question.  Ways that match with safeguarding principles.  You're looking for organisations that have autistic people working at the top levels, in paid, respected positions.  You're looking for organisations that ask autistic people of all levels of ability to contribute ideas and information, training and materials.  To guide best practice.  You're looking for people who have had safeguarding training and good DBS checks to a high level.  You are looking for autism training from actually-autistic trainers and their recommended allies.  Those factors won't stop the really cunning predators, but it's a start.

It is certainly true that consensual safe touch can be useful for some people in some circumstances as part of some therapies. As part of a proper, thoughtful, process with a measured outcome.

Is there a chance to say or indicate a 'no'?  Or is something happening so fast that the person has no control over it?   You should make it really clear that it is fine to say no.  You should always respect no, unless it is an emergency and our safety is at risk.

These are basics.

Think.  Think really carefully.  

Even if someone is not knowingly working in unsafe ways, it's not OK. Autistic people are not aliens from another planet and for whom totally different rules of contact and respect apply. We're people.  We deserve the same respect as you would give any other person of the same age.   Yes, if anyone - autistic or not - is acting dangerously, of course one would prevent the danger. That's a long,long way from saying that a whole therapeutic approach is appropriate.

Autistic people need body autonomy.  We need the ability to use our bodies and our communication patterns in safe autistic ways, for really good reasons.  We need to be able to say No. No is a full answer.

Ask yourself who is being your 'expert' in autism safeguarding. If you are not taking autism safeguarding advice from teams including actually-autistic people, you're not taking appropriate best advice.

Much to think about, isn't there.



Sunday, 11 September 2016

Autism: Wholly inaccurate data on sexual behaviour.

Almost no good research has been done into autism and sexual behaviour.


The existing research typically involves looking at
Young men...
with a low IQ...
in institutions...
...or really small groups where the data is meaningless.


And the data is often acquired by asking their parents or carers about their sexual interests.  Not the people themselves, of course.  That would be too obvious.  Naturally, all the parents and carers would know everything about a person's preferences, wouldn't they...or would they?  Did your parents know everything about you?  Do they now, if they are still alive?


Yes, I used bold for a bit of that, because it's pretty shocking.  It is, isn't it.


There is no good data on people over the age of 39
There is no good data on females. 
There is no good data on the vast majority who have an IQ in the normal or higher range.


I'm not making this up.


I've spent six hours, as a professional, reviewing the modern data we have, and that, frankly, is the best of it.


What it did reveal is something far more interesting.
Just one example:  In the general non-autistic population, some 60% of males would like to be a voyeur, and 50% actually have.  Just under 10% have a serious problem with this behaviour, in fact.  I bet you didn't know that. You do now.


In the autistic population, the figure is much smaller.  In the biggest study, only 13% were involved with voyeurism, not 50%.
In fact, in the autistic populations, the modern figures for 'problematic sexual behaviour' are lower than all the figures for the non-autistic populations


I, for one, am rather unimpressed with a small number of non-autistic professionals.  The few who assert that autistic people are more likely to be 'perverts' or sexual criminals.  We are, by the look of it,  less likely to be so, compared to anyone else in the neighbourhood.  Not a jot of sexual crime from females on the autism spectrum, as far as 150 research papers (and counting...) reveal thus far.


We don't have usable modern data at the moment for the vast majority of autistic people.  Those with a higher IQ than 70.  Those who are female or with a different gender identity.  Those who are older than 39.  Nothing.  We know nothing about those massive groups.  Do we think that Mrs Bloggins, aged 67, is likely to be shinning up a ladder and peering in through the windows of her next door neighbour's bedroom before heading off for the office?  What of Mrs Puddlemore; is she at age 50 leaping about the streets in a rude display of sexualised behaviour before going to Mother's Union?  I hardly think so. 


The notion that all autistic people are young men with a low IQ and alarming behaviours really has to stop.  Only some 1.6% of the two million autistic people in the UK are in care home settings. You did know there's two million autistic people in the UK, yes?  1 in 30.  USA national statistics, which one may assume also apply here.  No it's not 1 in 45 there.  Have another look.  They haven't found the rest of the girls yet.

I'd suggest that almost 100% of our data thus far is based on that 1.6% in institutional settings, in the past..







So, my friends, if someone is trying to generalise about 'all autistic people' being more likely to do X, please give them a very hard stare.  This is already a vulnerable population.  We are already heavily targeted for violence, bullying and sexual abuse.  The last thing we need is the population thinking we're more likely to be sexual perverts or predators.   That would be highly irresponsible, I would say, as well as inaccurate.  What a way to ensure exclusion and targeting.


Arguably, statistically, we'd do better to have autistic people teaching non-autistic ones how to behave, on sexual matters.  Because the sexual behaviour of that big group of the general population is, statistically, pretty shocking.  In fact, I might make myself a cup of extra strong tea...




Thank you.

Thursday, 8 September 2016

Autism and Lighting in Buildings



The photo above shows a prison hallway.  Could be any prison, anywhere.  This is how I see it, as someone who is autistic, with visual processing difficulties when anxious.

It doesn't show the intense flickering effect, like a strobe light.   That's fluorescent lighting.  It's nearly everywhere.
It's in schools, hospitals, surgeries, colleges, workplaces, faith centre halls, DWP centres.   Almost any time we are asked to go into a large building, we're faced with this, people like me.

It makes me feel nauseous.  It's disorientating.  Sooner or later, I lose the ability to speak.  I'm desperate to get away from that lighting and its effects.  This is without any other sensory difficulties such as odour, echoing noise, etc.  Some on the autism spectrum will enter a kind of 'epileptic event' if under flickering lighting for too long.  It will look like a temper tantrum, but it isn't.  It's not under the person's control.

Sometimes, the places we need to be the most calming, the least likely to cause difficulties...those are the ones that are the hardest to endure. The most likely to result in people trying to escape, or not understanding instructions.  Appearing to be unco-operative.  Appearing to be disrespectful.  Appearing to be 'kicking off' for no reason.


So easy to sort out.   Fluorescent lighting can be replaced, like-for-like, with LED lighting.  As long as that's not on a dimmer switch, there's rarely any flickering.  Then, use of sunglasses, tinted prescription glasses or baseball caps etc can cut down glare.  That's one less thing to cause difficulties.   LED lighting is cost effective to run, too.

Try to hold important meetings with people in a space with natural daylight.  North facing rooms have the best light quality for this, away from direct intense sunlight.  Somewhere as quiet as possible.  Away from really strong smells, too, where you can.  Think about your own smell; have you doused yourself in aftershave?

Remember when meeting autistic people to give good advance info about what the meeting is about.
Keep to time, or let the person know there is a delay and give a new timing.
Give an end time, so they know how much conversation to prepare for.  Keep to this too.
Don't do eye contact with us. It's respectful of our needs to let us choose where to look, as eye contact is physically painful for us.
Don't read body language; ours doesn't work, so you'll just end up confused or misled.
Give time for answers.  Maybe review answers later on.  Answers in a stressful moment may be 'automated answers', not actual answers. Not lies, just desperation to get away from the scary questions.

People working in buildings with low echoing and better lighting all benefit.  Not just the probably-one-in-30-people on the autism spectrum, who may have sensory/light sensitivity/pain difficulties.

Find out more from a good autistic buildings access person.  Autism Oxford UK provide this kind of service, for example.

(PS...when you saw the picture of the prison, at the top, what was your thought about who is autistic?  The prisoner?  Autism is nothing to do with a greater tendency to criminal behaviour.  Most autistic people are extremely law abiding.  Most people in prisons are not prisoners.  They are guards, admin people, physiotherapists, Chaplains, contractors, visitors, medics.  Anyone, anyone at all, could be autistic.   1 in 30* of anyone at all.)

*Yes, the official statistic is 1 in 100.  That's a very old statistic, based on figures before we understood autism often presents very differently in women and in many of those with a 'normal IQ'.


Tuesday, 30 August 2016

Autism, females, and how it's often different


Autism in Females





Autism in females often looks nothing like autism in males. This is a generalisation. There will always be exceptions.

Think of a stereotype of autism; the geeky anorak bloke with really awkward body language, a tendency to rock, flap or make a strange noise from time to time. totally abrupt manners, a fascination with train timetables, no eye contact, a loner with hardly any friends who hates physical contact. This is indeed a stereotype. Most of the men I know are nothing like that either.

But it's exactly what many people look for in a female to work out if she is autistic.
They'll never spot us that way. 

Autistic females are often the most amazing 'actors', at massive personal cost to us. Because of fear of exclusion and bullying. Because of a desperation to fit in, at all costs.  Not everyone.  Some cannot disguise, or do not choose to.

 We can often handle 'being normal in appearance and manner' because we made people our specialist subject. We studied and studied, learned and learned, practised and practised...for days, weeks, months, years....including practising how to do eye contact, hugs with friends, etc. Even if it hurts us sometimes/always.

 And we got so good at mimicking 'normal women' (whatever those are....but you know what I mean...) that we can pass for 'normal'. Even in front of friends. Even in front of friends who have known us for years. Yes, even in front of friends who have known us for years and spend weeks with us. How?


We hope no-one notices our need for detail. We maybe hope no-one notices our need to have a drink, perhaps, to steady our sensory system in public social events.
We hope no-one notices us leaving regularly to recover, saying it's to 'go for a walk' or 'go to the toilet' or whatever else.
We hope no-one notices us arriving late and leaving early at social events.
We hope no-one notices us using technology as a coping strategy.
 We hope we don't stim (rocking, flapping hands, etc) or say something stupid, so we learn stock phrases that will get us out of trouble a lot of the time, and learn to keep our hands still. Even if that means we cannot locate our body in 3-D space as a result.
We practise not talking about our favourite subjects for hours.
We have intense interests that seem really 'normal', e.g. celebrities, ponies etc - and hope no-one notices that we are utterly obsessed with rules, data, lining the stuff up, collecting one of each colour...
But the strain on us from covering up 100% of our autism is so intense that it leaks out in other ways.
We may end up with extreme anxiety or depression from the strain.
We may end up with high blood pressure and other health-related issues.
We may end up with anorexia or eating disorders.
We may end up self-harming as a desperate way of coping.
We may end up utterly alone, unable to make a single really good friendship - or only have one proper friend in the world. And if we do have that one proper friend, we study their every social skill, so we can adapt ours to be even better.  We are 'sitting targets' for predators and controllers, who realise that we are desperate for a friend.
But it's all an act. A desperate one. An act we often have to keep going at all costs, or lose even that one friend.
We can't see body language, or eye contact, or face expression.
We can't cope with the social 'overload' in crowds.
We can't handle the sensory overload in busy, noisy places under intense lighting.
Our brains are autism-design, not standard-design. And what we learn to do is live a life of pretending they are not, at massive exhaustion and massive personal cost.
So many of us are told, "There's no way you are autistic", and are denied a diagnosis. So we just think we're substandard instead.
The moment we 'come out' as autistic, few can believe we are. "But you're nothing like an autistic person!" "How could you possibly lie to us for all those years!" etc etc.

Hundreds of thousands of us in the UK have had to hide, or have no diagnosis and maybe no clue that they even are autistic. Living in a world that is obsessed with social grace and women being a certain way, we truly may be worried sick about anyone knowing otherwise about our inner reality - our actual lived experience of the world around us.

There's new research suggesting that many, perhaps most, autistic women are also part of the LGBTQ community. The pressure on us to also be straight, also be very female (even if that is not how we identify). Layer after layer of pressure to be something we are not.
All a generalisation, of course.
But....no, you won't know who of your female friends is autistic. Other autistic people often do. We can often spot each other a proverbial mile off. Only a proper diagnostic professional can give a proper diagnosis, of course. Some of us merely train those diagnostic professionals in the first place...

 It's not a crime, being autistic. It's a brain design.
If a female friend has a diagnosis, it doesn't mean there's something 'wrong' with them. It means they have to balance their social and sensory input really carefully...and ask good questions about how you are, rather than reading your body language. It means they don't intend to be clumsy with wording, or plan to have to rush home early if exhausted. It's not an insult or rudeness.

All that pretending to be normal? That was because they wanted to be with you and wanted to impress you and be a good friend to you. It wasn't a lie intended to hurt you.


Society expects us to be 'normal' no matter what the cost to us. Many of us are questioning that.
So, we are not trying to be rude to you by being autistic. Never doubt it.
Say it's OK for us to be us, and mean it. Then we know that you're a friend.

Autism and Females: "You can't be autistic because..."



Very good to see so many colleagues talking on media today about autism and females.
The difficulties getting a diagnosis, in particular.


"You can't be autistic because...."


Most of us with a later diagnosis will have heard so many variations on this.
"You can't be autistic because you're female."  But half of those on the autism spectrum are indeed female.  So many miss out on diagnosis because of the myths.


"You can't be autistic because you have friends".  Autistic people have difficulty befriending non-autistic people, and vice-versa.  We do not have the same difficulties befriending autistic people. 


"You can't be autistic because you dress well and wear makeup".  Goodness me, there's nothing in the diagnostic list to suggest we have to look a certain way.  Sensory needs, routine needs and difficulties with co-ordination might impact on how we are able to dress.  But we are all different.


"You can't be autistic because you are married".   Quite a few of us are married to autistic people, and it can work wonderfully well.  It can also work with a relationship with non-autistic people, if both are aware of differences and respectful of those.

"You can't be autistic because you have children".  Another myth.  I know so many fantastic mums.  And dads, of course.  But as this post is about females, I'll say that there is such depth of caring, such passion for getting it right and bringing up wonderful young people.  Our own son, Chris, is now an autism consultant with a degree in Psychology and Counselling.  And is autistic.  Autism was not a barrier to me as a mum.  It was an advantage.



"You can't be autistic because you can make eye contact".  I can pretend to.  Actually looking into eyes is intensely painful.  Literally.  And exhausting.   That we force autistic children to do it, so others feel OK, is quite awful.  We need to stop


"You can't be autistic because you aren't interested in trains"


No, really, I've had this one. Autistic women often have female fascinations and passionate interests.  Not male ones.  It looks different.  It's the depth of that fascination, and the way that we collect and arrange the things, that is the giveaway.  300 books on horses?  150 handbags?  I generalise.  Actually I used to collect toy cars, maps, etc.  I'm saying that collections and intense fascinations just don't have to be about vehicles or stamps.  Honest they don't.


Endless myths.


I am so honoured to know so many wonderful autistic women.  As friends, as colleagues. 
The quiet ones.
The loving ones.
The caring ones
The determined ones.
The passionate ones.
The creative ones.

Each made in excellent and unique ways.

Each with their own accounts of the exhaustion of trying to get a diagnosis.  Of trying to get basic support for sensory, social and routine-based needs that go with autism.  And of repeatedly being ignored, because we are 'too good' at appearing non-autistic.


What is it with the myth that one can see autism just by looking?


Are we supposed to dress as the international autism symbol each day?  Sort of a joke.  But sort of not. "You don't look autistic" just means, "I don't feel uncomfortable around you".  That's not a diagnostic criteria.  That's the other person's individual reaction to the word autism.  The difficulty is that those of us who 'don't look autistic' get no support.  It's as bizarre as going up to someone who is Blind and saying, "Well you don't look blind", and so refusing to help them.

We are indeed all people, all loved.  And we deserve a life that is not one long fight for basic needs and basic understanding.