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   It's out of date.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

Watch out for these 'red flags', please.

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. 

Some - a few - people are abusers who rely on getting good access to a good number of autistic people who cannot talk, and who also have a learning disability.  Such individuals are a 'perfect victim'.  Very often trained using methods that teach them they have absolutely no body autonomy.   In other words, no right to say no to people touching them.  Anyone can do almost anything to them in the name of 'therapy' and it's always OK.  Allegedly. They don't get to say no.   

If you are unable to speak, not confident about communicating in other ways...and taught that others can do almost anything they like with your body...well....

And 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.  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.

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".  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'.  Once you have convinced the onlookers that other autistic people are liars about their autism, 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.  Autism means we cannot manipulate in devious ways.  It's outside of our range of abilities.  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.
6) The 'Famous Person Gambit'.  'Look how famous I am.  Here's pictures of me with the great and good - really powerful people who could make your life hell.  Here are my medals and awards.  I must be OK.  Look at my amazing giving-away-of-money  in ways which brings me into touching-contact with lots of vulnerable people'.
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 safe".  There is no evidence that having an autistic relative stops an actual predator.  At all.
10) "But they enjoy it!".  If you have never known anything different to people handling your body without your consent, you think it's normal.  Quite often, inappropriate things are done to autistic people right in front of an audience, in very sneaky ways.  In front of an audience who will clap and approve, thinking this is 'ok' as 'therapy'.  Is it?  Think.  When an autistic person hears everyone else clapping with approval, what does that say to them about what's OK?
11) Abusive language about autistic people.  "People like that..." "They have no understanding of manners" "They are a tragedy".  That kind of thinking says, "These aren't really humans".

Use it as a checklist. 

If you have any concerns, after using it, ask for help from your safeguarding specialists.

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 skilled at particular things.  Very clever at what they did, and how.

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.

There are of course a large number of excellent, respectful people working with autistic individuals.
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.  People who have had safeguarding training and good DBS checks to a high level.  Those 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.

It is also true that many autistic people find unseen sudden touch or hugging intensely painful and frightening.  As an example, it's not OK for anyone to be pressing up against the back of us as part of a 'therapy' unless they are medically/[professionally qualified and there is a really good reason for it.

You should always, always be in full view of the autistic person unless this is a total emergency.  Never suddenly approaching them from behind to grab them. Especially not if you are a big bloke and this is a young girl.

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 apply. We're people.  We deserve the same respect as you would give any other person of the same age. 
 
Don't let others work in unsafe ways, because they think it's OK and they are famous.  Be especially wary if they are telling you to ignore safeguarding concerns from others.

It's not OK.

Autistic people need body autonomy.  We need to be able to say No. No is a full answer.

Thursday, 15 September 2016

What is Autism? It's probably none of the things you think it is.

My work as an autism professional takes me to a lot of places.  I get to see a lot of excellent practice and a lot of excellent people, working respectfully alongside autistic individuals.

I also get to see and hear some things from Ancient Times.

I know I've stumbled into a scene from the 1950s when I enter an event and the extremely well spoken, well presented non-autistic leader is calling autism a 'disaster' or words to that effect.   I know it's worse than that when they bring to the front a number of individuals who have profound learning disabilities, profound speech and language difficulties, extreme difficulty staying in their seat for even a few seconds....and then call that 'profound autism'.

Those are three separate conditions that are not autism.

Let us look at the diagnostic manual, so that you can see what autism is for yourself.  Because the people-from-the-1950s-thinking will tell you that this is nonsense. I will also translate it from 'technical' to how autistic people tend to describe each thing.

http://www.cdc.gov/ncbddd/autism/hcp-dsm.html  This is the most modern autism list.  It's from DSM 5.   In the UK, our equivalent diagnostic list, the ICD, is being updated.  Many diagnostic professionals are using the DSM 5 one at present, because it is the modern understanding of autism.

A) Social communication differences.  We can 'read' other autistic people.  We cannot naturally 'read' non-autistic people.  This leads to amazing misunderstandings.

B) Fascination with things, love of learning about our specialist interests, passionate hobbies that develop into intense specialism.

C) Desperate need to be able to predict sensory and social 'load' on brain wiring. Our brain is designed differently from birth. It is built for detail, not handling shopping centres or parties. That stuff literally causes electrical overheating. The sensory processing is different. Look up National Autistic Society's TMI film. Two minutes long. That's typical of shopping centre experiences.  Exhausting, baffling stuff for us. Not naughtiness.

Are you still looking for the bits which say 'delayed speech', or 'low IQ'? What about the bits that say 'can't sit still without getting up and racing round the room'. Or, 'is violent and manipulative'?  Any sign of 'lacks empathy?' Get on that link and look.   Yes. Nothing.

Watch out for mistaking autism for other things. It really is not those things. It is not a disaster, and we are not 'locked in our own world'. Watch out for people telling you that also.

Thank you for listening