Thursday 26 May 2016

Autistic Mythbusters

We get a lot of untrue things stated as 'facts' about autism.  Often from research done decades ago, before we had any clue what it is, or isn't.

For example, "BACKGROUND: Autism currently affects 1 in 68 children. Boys are four times more likely to have autism than girls. About 40 percent of children with autism do not speak, and about 25-30 percent of children have some words at 12 to 18 months of age and then lose them. Autism is a neurological development disability that generally appears before the age of 3. It impacts the normal development of the brain in the areas of social interaction and communication skills."

Well, no.  The underlying data shows it's about 1 in 30, not 1 in 68.
There are multiple gender identifications with autism, not just male/female. 

There are as many autistic females as males, but we've been rubbish at diagnosing them.
The statistics on how many of us speak are decades out of date.  The huge majority of autistic people speak.  Perhaps not always, perhaps not using the same language structure as the majority.  Perhaps 'speaking' using technology.

The myths about how many autistic children regress have very recently been debunked by science, which also noted many non-autistic children regress for a while.  It appears to be a natural part of autism brain development in many/most cases, they muse.
It's a neurodiversity, mostly made into a disability by a society that disables us continually, then blames us for it.
We have a normal development of the brain for autistic people, and socialising/communicate autistically, rather than in the ways that most other people do.  This is not a broken way of socialising.  It's a different way.  When enabled to thrive as #actuallyautistic people, most of us do really well.

So, here are some surprising facts.
Well, apparently surprising to some.
Probably half of autistic people are female.
Autism is not a mental health condition. It is in the Psychiatry manuals because Psychiatrists diagnose brain function differences as well as mental health conditions.
Autism is permanent. One does not outgrow it or cure it. One can be taught an exhausting way to disguise it in front of others, so others can be less prejudiced about us. That is not a cure. That is about others and their reaction to us. Some were misdiagnosed as autistic, which explains any genuine 'outgrowing' of it.
Autism has always existed. It is part of human diversity.
A third of autistic people in surveys says they are LGBTQ.
Autism often has positives. Honesty. Integrity. Morality. Fairness. Passionate focus. Extreme expertise in areas of work. Passionate about social justice. Able to keep asking for fairness.  Senses that often are better at detecting things. Generalising, but all backed by research. It would be an advantage in ancient village settings, for example. It is not an advantage in busy noisy socially-obsessed modern society.
Only 1.6% of autistic people in the UK is in a care home.  I did the research for this.
We are no more likely to be violent than anyone else. Autism does not cause deliberate violence. At all.
70% of us do not have mostly 'meltdowns'. We have shutdowns.  Many have no 'meltdowns' at all.
We are no more likely to have a low IQ than anyone else.  The old statistics were from decades ago, before we found the vast majority of autistic people.  We're still finding more and more.  It was just really easy to find the ones with very low IQ or other really noticeable differences.
We are not 'challenging'. We are different. Sometimes we are distressed because we are overwhelmed, afraid, exhausted, in pain.  Usually cause by someone misunderstanding autism and our sensory/routine/communication needs.
We may be in extreme pain and fear in some situations. Understandably we may wish for that to stop. Understandably, people in pain and fear may not be listening too well. This is not 'challenging behaviour' by us.
We cannot see the expressions of others in 'real time'. This may lead to misunderstandings. These are not anything to do with deliberate cruelty or lack of caring.
We will communicate differently. This is not cruelty, lack of caring, or rudeness by us.
Repetitive movement or sound is part of autism, not a 'stereotypy' that needs 'retraining'. Unless it causes physical harm of course.

Learn about autistic people, direct from us.  Fabulous people, usually kind, creative, focused and wonderful.
Thank you for listening.

Sunday 15 May 2016

Positive Behaviour Support and autism - continued questions

Recent months have involved me training an increasing number of therapists.  Excellent individuals. Some have asked questions about my view of some other 'interventions' and therapies.  Amongst these, Applied Behaviour Analysis (ABA) and Positive Behaviour Support (PBS).

Having worked with an ABA charity for two years, I have a good knowledge of what it involves.  I simply disagree with its principles.  There are indeed some good places and some good practitioners who adapt it to be a respectful process.  I have no doubt of this.  I know some very nice people who use ABA.  And I also have no doubt that some people find some parts of it useful to solve their particular situation.  I still do not like the underlying principles of ABA.  There are, in my view, better and more respectful starting points for working with neurodiverse individuals.  ABA often teaches children to endure pain, fear or exhaustion, very nicely.    I'd rather they were not in pain, fear and exhaustion, personally.

This PBS thing?  It interests me.  Few realise it is a form of ABA.  A lot of Councils continue to pay a fortune to places to use it in care home settings.  And yet, see if you can find out what it actually involves.  I have tried.  I got stuck in a proverbial loop of "'s evidence-based practice". What does that mean?  "Ah well, we analyse why a person behaves as they do, and gather  folder after folder of carefully indexed, colour coded data, and then we do something that changes the 'problem behaviour'.  It's evidence-based."   OK, but what behaviour are we counting as problematic? Who determines that?  On what basis?  How does the colour coded folder , put together over weeks and months, help little Jonny not be in pain any more?  Or for longer than necessary?

That's when it often goes quiet.  Difficult to find out how the PBS teams are trained too.  There's a Diploma in it, from a University.  There is a reading list.  On the reading list, the 'required reading' book.  It's called Individual Positive Behavior Supports, by Fredda Brown et al (2015, Paul Brookes Publishing). There is no electronic version, as far as I can see.  The book costs the best part of £70.  So I bought one.  Not many people will be able to afford that, to find out what it is.

PBS is used for 'challenging behaviour'.  Not specifically for autism.  But it's used a lot now as a way to get autistic people to behave in respectful ways towards others, when in intense pain, exhaustion and fear. Rather, that is, than focus on  first changing the situation causing the pain and fear.   Thank goodness non-autistic people always behave wonderfully when in pain, fear and exhaustion, eh.  Oh wait, no they don't.  So, it's just us that has to do that?

Because autism is a sensory processing difference, at its core, I turned to the contents list at the front.  Nothing on sensory needs. It talks about Applied Behaviour Analysis as the framework for PBS, though. And Ivan Pavlov's contribution to the underlying structure of ABA.  Yes, the man who did the dog training psychology stuff.

I turned to the index.  Nothing specific about sensory processing.  An entry on 'sensory stimulation', which says that environments should be "interesting and stimulating".  Not necessarily for autism of course.  Some may find 'interesting and stimulating' environments to be a sensory overload. So that may have the opposite effect from that desired.

I had a look at how PBS supports vital autistic repetitive movements ('stimming' such as rocking, flapping, etc).  P 289 tells me that, " times, problem behaviour is unrelated to the environment...for example stereotypic behaviour tends to occur more frequently amongst individuals with autism...".  Problem behaviour?  The sort that PBS trains people not to use?   Strangely enough, a lot of support plans from PBS seem to have 'extinguishing self-stimulatory behaviour' as a goal.  Yet we know from latest research that some use hand flapping as a way to gauge distance to objects, or to process what we are seeing.  Some use rocking so that we can tell where we are in relation to objects.  ABA and PBS want to take away useful adaptive strategies, in a lot of situations, because....why?  Serious question.  Yes, if it's self-injurious, of course one intervenes.  99% of stims are not.  So....

OK....moving on...what about autism itself?  There is quite a list in the index about "Autism spectrum disorders".  Not my favourite phrasing for what is a neurodiversity, not a disease or fault.  Nothing about what autism is, anywhere in the book. We learn about J, as an example, though.  J is terrified of loud noises and runs away.  Quite right too.  They cause the equivalent of an electric shock to the brain, for some of us.  This is a problem behaviour, running away from the noise, we are told.  J is taught that if he hears a loud noise at school, he is to put his hands over his ears AND point to a door so that he can leave.  Now I'm not a scientist, but will someone tell me how J can do both things at once?  Whilst terrified and in pain, possibly stunned from an internal electric brain-shock?  (Good research happening on this).  Nowhere does it help J stay in the classroom by removing the loud noises, or indeed offer J earplugs or similar.  It is up to J to learn how to ask really nicely when in distress, and do without his time in the class. By using lots of analysis, graphs, statistics, observations, plans, folders, and a form of polite repetitive coercion.  OK...
In another extract from the book, we learn that family X has a child who is autistic.  He became distressed when asked to do things causing extreme pain to autistic people (entering and staying in a noisy, smell-filled school canteen amongst jostling chatting people).  The PBS plan involved them teaching him how to adapt to the situation.  Rather than allowing him not to be in pain.

Another parent, we are told, has set a goal for their child of going to parties.  No, really.

Would any of my fellow autistic professionals  - or indeed other therapists -  like a cup of strong tea?  I need one.

I remain very concerned about what PBS is attempting to do, with autism.   

This is not, in my view, a suitable system for autism.  It has been mis-applied, in my professional view.  I'd like to see some research into exactly what is going on with this 'evidence-based' programme that seems not to know anything about autism itself.

Would you?

Thursday 12 May 2016

Autism: How not to cause a lifetime of anxiety and shame for your child

For half an hour, yesterday, I listened to a mother, talking about her child., online
He 'has autism', she explained.  It is something separate from him, she said.  This isn't the real him, she said. 

"He's hidden behind autism.  I could tell you about life with my son, she continued, or I could tell you about my life with autism."  Paraphrased.

When he was born, said the mum, for a while he was perfect.  And then, he wasn't, because he 'has autism'. Yikes!  From hero to zero, just like that.

There was more.  Half an hour more.  Relentless tragedy.  Age of child, below school age.  We learn their full name.  I was able to trace the family within a moment online.  So could anyone else.

Parents, please stop doing this. 

I am an 'autism parent'.  And I'm autistic.  I started off non-verbal. Sometimes, I still am non-verbal.  Autism isn't something hiding who I am. 

Nor is there a 'real Ann' hiding behind my gender. 
Nor is there a real Ann hiding being my colour.  
Or my sexuality.

All four things are me. 

It hurts deeply to be told that we need to be someone else, something else,  in order to be loveable, accepted, respected.  You are loveable as you are.  So am I.  Once we learn to honour one another's differences, that becomes so clear.

Your child can understand what you are saying/writing.  Or, they soon will.

Just because they appear not to be communicating?  Well, believe me, they know.

Your child will one day be able to find that stuff, online.  It never goes.  It never disappears, that online recording.  It'll be there, in some form, forever. With their name on it. With you, their parent, explaining how you thought you had a perfect child, but have had to put up with second best. This allegedly faulty child that you didn't want.  Oh my. 

Is it any wonder so many of us commit suicide, or live with anxiety, depression and low self-esteem?  The life quality for autism is terrible, and no, it's usually not the autism doing it.  It's attitudes.  The attitude that we are broken and need fixing. The attitude that we are the child people didn't want.   

We learn differently, we become skilled at things at different rates to you.  Without the right support, it can certainly be exhausting in the early stages, yes.  Only 1.6% of autistic people live in care homes.  Only a few % never learn to speak.  In fact, not speaking isn't even part of autism diagnosis any more.  That's a separate condition. It can occur alongside autism.  It did with me.

Looking at a child, and thinking, "Oh it will always be like this", well, no, it won't.

Your child will grow up to be different and wonderful.  Always.  One cannot cure femaleness, or whiteness, or gayness, or autism.  It is a design of person.  It normally has benefits, if only people will look for them.   Two million autistic people in the UK on one estimate.  Every one of us someone with something to offer the world.

Most are honest, fair, moral, passionate about social justice.  Dedicated, expert in some interest.  Quirky, humorous, a friend, a partner, a parent., a colleague, a professional.

Right now, when they are young and mostly non-verbal, that is so hard to see, isn't it.

Never ever make their future a nightmare for them to live in, and their past a nightmare of shame and 'othering' for them to remember.

Don't do that to them, please.

By all means talk about how you need better support and services.  And how difficult it is for you, and your fine young person, to cope without that adequate support level. That's fair. 

 It's why I work nationally, where I can, with many fine others, to make a difference to that.  So you and your children have that better future.  It doesn't help me, or them, when life gets made worse by wading through that endless negativity every day.

Please don't turn your child into a model of deficit for the world to look at.  An exhibit to be stared at.   It hurts them.  

Learn about autism, from autistic people. Lots of us who are explaining this to you.  Not just me.  Learn about sensory differences, learn about brain overload, learn about why your fine young person responds as they do.Thank you for listening.

Sunday 1 May 2016

"Oh Those Autistic People Overreact - Take No Notice"

Few things are as dismissive, disempowering and silencing at that comment.  "Oh, that autistic person?  You know what they're like.  Always making a big fuss.  Best to ignore them."

I've heard it, in various forms, rather too often.

To be clear at the start, many people are fantastic.  Encouraging, enabling, kind, caring.  But a few - well, they are not.

Let's look at some cold, hard facts.

There are well over a million autistic people in the UK.
Only 15% are in proper employment, despite a goodly number having the most amazing skill sets.
On average, we'll die some 16 years earlier than others, because of the immense pain and stress we are forced to live under.  Because of lack of access to basic things.  Because of lack of help for medical conditions.  Because most buildings are inaccessible for many of us, and no-one has really cared.  No, really.  Not even a BSI Standard to enable access to important things like hospitals and education.

70% of autistic women have been sexually assaulted.

30% of autistic women have been raped.
Most autistic people have been defrauded by people they thought of as 'friends'.  Most are badly bullied at some point in life. 
Most autistic people are lucky to have one real friend in the world
Some of the alleged 'help' involves torturing us with electric shocks, and taking away everything we hold dear, to persuade us to comply with non-autistic people at all costs
Many live in poverty, or on the streets.
Many end up with chronic health situations that were totally avoidable.  Including mental health conditions around anxiety and depression.

And we are overreacting to our situation, are we?

Make sure you have a look at this:

Thank you for listening.