Sunday, 31 December 2017

Encounters with Autistic People - The Stages


I see this journey so often, in the encounters with others.  In watching how they respond to my autistic family, friends, colleagues.

In this post, I'll talk about some (not all) of the typical encounters with me, as an autistic person who can appear entirely non-autistic.  It's called 'masking'.  A lifetime of being conditioned to put on an exhausting and demoralising outward appearance, to avoid acts of ostracism, hate or fear by others.

"I can do this!"
This is stage one of the encounter with me.  "Ann is just like me.  Perhaps she's just a bit shy, or a bit nervous.  All she needs is a bit of encouragement, a few reassuring words, and she'll be as 'normal' as everyone else".  Sometimes Stage One starts and ends with pity.  "Oh the poor autistic person, we must treat them as a special angel and look after them..."


It is a well meaning start.  Certainly better than some of the alternatives which have involved altogether scarier reactions.  Yet, it's doomed to failure. It's only a matter of time before this well-meaning gambit fails.  You see, I'm not like you, and that's OK.  I run a different brain 'operating system'.  My way of signalling happiness may look different to yours.  My way of signalling distress looks different to yours.  My way of communicating concern can come across as rude.   Sooner or later, I run out of ways to mimic being-just-like-you, and will revert back to my natural body language, my natural lack of eye contact and flattened voice tone (which can sound rude or pedantic).   Your brain is expecting me to be Just Like You, so it automatically registers this change as 'Ann is rude'.  We now have all the ingredients we need for you to think I'm not interested in your friendship or fellowship, or are malicious, and we enter the second stage.

"No, Ann is Rude"
Still convinced that I'm perfectly capable of being just-like-you, you'll now convince yourself that it's my bad attitude that's at fault.  "Ann is rude, Ann is nasty, Ann wants attention, Ann is trying to control people by saying she's exhausted or cannot cope with a sensory environment."  I've had it all.  It's why I and colleagues spend so much time training Psychiatrists and Psychologists on autism, and healthcare teams, and churches......, because it's so easy for people to entirely misunderstand a social diversity and think it's a 'personality disorder'.  It's at least predictable, stage 2.  But it's also deeply unfortunate.  Because I'm not ever knowingly rude and nasty at all. To me, people are friends, and much loved by God. 
Sometimes I'm afraid.  Sometimes I'm so tired after a day of trying-to-cope that I cannot do more.  Sometimes I'm reverting back to very normal autistic communication, which is factual, straightforward, without hidden meanings.  But, once a powerful person decides I'm actually Rude, I'm scuppered, to use a nautical word.  I will now find that I'm dropped as a friend, dropped as a colleague.  I'll find that others are 'warned' about me, and that people compile careful lists that support their hypothesis of Rudeness, no matter how wrong that hypothesis is.  People shun me, stare at me and walk past.  It's scary, it's humiliating.  It's awful.


Sometimes, this Stage 2 gets diverted into, "I can't do this", and the person trying to encounter me will simply run away.

Some make it to Stage 3.

"Ah, Ann is autistic, and that's OK"

You've no idea what a relief it is to find people who want to get to Stage 3.  I'm blessed with a number of them.   That dawning moment when they put down their List of Allegations, turn away from the conversations about 'How we should avoid that woman', and encounter the real me.  Not the two their brain invented - the 'one-like-them', and the 'one-who-is-nasty'.  But the real me.  The one who treks for hours to help them, just because it matters to them.  The one who prays with them in the darkest moments.  The one who wants them to thrive.  The one who cheers them on when they need it.  The real person who is sometimes too tired to attend something, too exhausted to communicate well.  The actual person who is sometimes very afraid and will run away from a situation that is too much to handle...but that doesn't mean hate.  The person who is clear with them about what I need in order to function at all.  Very little, but it's not negotiable.  Autism isn't something I choose.  It's hardwired in.  A genuine difference, a diversity, and one that society disables with its blinding lighting and its deafening sound levels.  My brain takes in too much, and will focus on different information to yours.  Walking alongside one another, we can learn, we can laugh, we can love.  We can complement each others' abilities.


If you are encountering any autistic person, watch out for finding yourself mired in Stage One and Stage Two.  If that's where you are, perhaps take some time to do some reflecting.  Because Stages One and Two are about you and your responses to difference, not about the autistic person you're encountering.  We can't really help you through those...you have to take that deep breath and say, "Heck, I got that wrong - can we start again, please?"  And -provided the behaviour of the person asking never got into dangerous territory [I've had death threats, threats of violence, etc]  I'll say, "Yes, of course, my friend".

Because we're all on this planet together, and we all bring things of value to it.  You are an important part of this world.  So is everyone else. So are we.

Thank you for listening.




The picture shows part of a rainbow-coloured mosaic bowl in which some small cards have been placed.  On them are words of kindness such as Gentle, Thoughtful, Love and Peace.  Words which remind me of so many of my lovely autistic family, friends and colleagues...if allowed to live without pain and fear.



Friday, 29 December 2017

On how power silences marginalised groups


Great power brings the need for great responsibility.

Online, I and so many other autistic people have been watching a rich, powerful, well-connected, well publicised author trying to silence autistic voices of dissent.

The author has written a book which outlines her son's autistic behaviours.  She describes him in ways many autistic people find humiliating, dehumanising, horrific.  I don't use such words lightly.  It describes how the mum in question intends to seek a vasectomy for her son, currently aged 15, to stop him having children in future.  He is at school, talks, reads, has friends.  The author had described another autistic person in terms that the person found distressing.  When they complained about this, they were referred to as a brat.   It was a moment of revelation as to the author's view of autistic adults.

When autistic people took to finding copies of the book (for a while available as a pdf online, since removed)  - or reading copies in the library... or borrowing copies from one another - they started reviewing it online.  The author didn't like this, it seems.  


The author contacted a friend of theirs on a large bookselling site and it seems asked them to censor the comments.    Then apparently asked her largely-rich, powerful group of online friends to target the autistic commentators by getting the review sites to remove their comments.  

Let's think about this for a moment.
Autistic people are amongst the more impoverished on the planet.  So many have no jobs, no spare income.  Not so much as a spare £1. Society prevents most of us from working, such is the level of misunderstanding and hate out there.

In order to comment on whether we have a right to reproduce, and whether an author has the right to name and shame their own child in that debate and publish it...we have to now be able to afford to buy a book each, it seems.  From a specific bookshop where the cheapest price seems to be £8.  And review it in ways that please the author, or her mate will remove their review.  £8....  That's possibly two days of food, for an autistic person.  Maybe it's a whole weeks-worth of food.


This, my friends, is power.
The power to decide who is rich enough to review you.
The power to decide whose words are good enough to comment on something that affects their own future, their right to exist.
The power to decide that the pain, the shock, is 'trolling', nastiness, simply not liking autism parents and having nothing better to do than to attack people for no reason.  The reality is that many of the reviewers are 'autism parents'.  Autistic autism parents, specifically, with nothing whatsoever against 'autism parents' of any kind who safeguard their children.

I am so blessed with knowing hundred upon hundred of autistic parents.  Fabulous they are, too.  Kind, wise, careful, knowledgeable, capable.  A few needed some support.  A few people of all kinds need some support.  Let's face it - nearly every parent needs some support.

Autism doesn't make someone a bad parent.  No, it doesn't.  


In fact, it can make them the best parent of all, especially perhaps to an autistic child, which statistically they are very likely to have.  A parent with great insight into their child.  A parent who has known what it's like to overcome obstacles and find ways round problems. Who can 'translate' the outside world to them.  Who can model how to be autistic in authentic ways.  Yes, some need more support.  Yes, some people of all kinds need more support.  Some of us not only did without support, as a parent, but offered support to a huge number of others.  It's very wrong to assume we are always the 'burdens'.


If one partner isn't 100% reliable on contraceptives, the other partner can look after that side of things.
If one partner needs a bit more support with some things during parenthood, the other partner can help support that. And vice-versa.

A good number of autistic people are gay, so contraceptives may not be a part of their lives anyway.

Society makes autistic people suffer. And silences them from saying, "This hurts".  Is that fair?

Society determines who can reproduce, and who is to be sterilised.  We know this from the very eugenics programs that the author discussed in the book.  (Oh yes, I've read every word of it).  And we know that we have to believe in each others' humanity.  In each others' soul.  To have hope, to have love, to have caring.


I was a non-verbal autistic child, rocking in a corner, lining up things.  No-one would have believed me capable of anything that I managed in later life.  Not one bit of it.  I'm still sometimes non-verbal.  I do not live 'independently'.  We have the most fantastic autistic son.  We are so proud of him. 

The author's son will spend his life with that book being a tool to deny him his future, I sense.  Naming him, it's now a tool with which to bully him, and mock him.  A tool with which to deny not only his humanity and his choices, but to encourage a whole lot of other people to do just that to even more autistic people.  To not only describe us in humiliating ways, but to get a lot of people to silence us if we say, "This hurts".


The autistic people have the right to say this isn't OK.

It's not OK.


It's 
Not
OK.

Learn love.  It's better.

Thank you for listening.



The picture at the top shows a woman with her mouth taped shut.  It represents silencing of voices.

Thursday, 21 December 2017

"I have a right to say how it feels" About disclosing, online.

 
Many of my autistic colleagues have spoken about how it feels to be talked about, online.  Most have reported that some parents and carers get quite angry, in response.

"I have a right to say how it feels", they say.  Perhaps in different words to that.  "I have a right to say how it feels to have an autistic child.  I have a right to say how I feel about autism.  I have a right to say how it impacts our family".

Yes.

Yes, you do.

You have that right.

We also have a responsibility, which is to that young person in our lives.

I know you love your child.  I know you want the best for them.  I know that you are tired.  I know that you don't have enough services and support.  I know that you have to struggle to get good information, to get good training, to get enough money to keep things going.

I know you need to talk about it.

I am the parent of an autistic son.  In early years, I needed to talk about it.  We struggled.  There were school changes involved.  There was battling the system.  There was tiredness.  There was anxiety, as son would wrench away and run straight out in front of people, trolleys, traffic, with me racing to catch up.  So much ....so much to talk about. I can talk about it online now in public, in ways that could identify him, as he's an adult and he's said that's OK.  He gave consent.

But...where?  Where is OK to talk about it?  And what is it OK to say?  Those are the things we're negotiating, in this conversation.

"My child will never understand what I say", say a number of parents.  Except...we do.  I was non-verbal  I knew what was being said.  Countless non-verbal autistic people online, explaining that yes, we hear.

"My child will never read", say a number of parents.  Except, so many now use technology to do just that.  Maybe not today.  Maybe next year, the year after, in five years...


Your child hears what you say.  One day, your child will read what you wrote.  The online stuff is going to be there for a long, long time.

So, what will they hear?  Especially as so many have hearing so good that they can hear from several rooms away... even if you are keeping your voice to a low level.  Will they hear you say, "I am so tired, I wish we had more support as a family so that my fantastic child is able to cope better, and I'm less stressed out."  Yes, that's true.

Or will they hear, "I hate autism.  My child has destroyed my life.  My child will never be able to talk, never be able to achieve, never get a job, never have a relationship, never have friends...".


If you were your child, which message would you like to hear about you?  What message does it tell you about your worth, to your parent?

If your child learns to read, or has technology to do so, one day, and finds what you wrote online about them, using their name and picture, what will they read?


Will they read, "Why is this system such a struggle?  How do I find the right things for our family?  Who can lead us through this and help us understand?"

Or will they read, "Why is my child such a nightmare?  What about the impact of my child on the rest of the family?  Thank goodness I'm such a superhero, because we need to be superheroes to cope with A Child Like That, don't we.  Those autistic adults are so nasty for saying we're hurting our own children for talking about them online in awful or humiliating ways, for all to see.  They haven't a clue what we parents endure."

Will they go to a school, to find that the more able readers have read all about their toileting habits, and use that information to bully them?  Will they go to start a job, in years to come, and find their employer has Googled their name and is now reading what Dad said about how this person destroyed their lives?  Yes, you can't imagine that your child will ever be in work.  People couldn't believe I was going to work, either.

Just some examples.
We know that the autistic suicide rate is huge. 
We know that so many autistic people are living with massive anxiety and depression. 
We know that on average, we die 16 years before others, because our quality of life is made so bad.

That's not 'autism'.  That's living in a world that is relentlessly hostile.

We need you to be on our side.

We need you to be there.

We need you to believe in us.

And it hurts.  It hurts so much when what we hear is, "My child has destroyed me". Or words similar.  "I hate autism", or words similar.   Autism, you see, is us.  It's who we are.  There is no 'real child' hidden behind autism.  It's us. 

Those distress behaviours are distress, not 'autism'.  Distress at real pain from the sensory environment.  Distress at real pain from social overload.  Distress at real pain from thinking we personally have caused our parents to hate us, just for being us.  That our parents think we will never achieve anything.  That all of our lives will be lonely and friendless and jobless.  After all, why would our parent lie about that?  It must be true...

A lifetime of those negative things, written for all to see....that's not good for any child.   For autistic children, it can be devastating.


Your child hears you.

Love them.  Find support quietly, safeguarding their identity from public vision until they can give you consent to release details.  It's possible to write powerfully using a pen-name, not a real name.  Listen to autistic adults, because lots of us have been the same as your child, in the past.  No, really.  Listen to lots of us, so you can get some useful things from each person.   And when you're talking anywhere near your child, put the blame where it belongs: on a system that doesn't help you as a family.    On a world that doesn't understand autism Help us change that system.  Help us work with you, so that your child succeeds.

Love them. 
Protect them from public and peer scorn and missed opportunity in later life.

For you are their anchor in this storm.

Thank you for listening.


The picture shows a young girl in a yellow dress, communicating with a peaceful dapple grey horse.   Just because it's a lovely photo.  And because a life around horses, dogs and cats taught me a lot about how to communicate, and how to begin to use language.  But that's another story...


Saturday, 2 December 2017

"Autism Costs Society £Billions" Or does it? Let's look.

Today, I read the NHS research project paper for Applied Behaviour Analysis (ABA).  "Intensive behavioural interventions based on applied behaviour analysis (ABA) for young children with Autism spectrum disorder: A systematic review and cost-effectiveness analysis"  is the title of the project.

The project (2017) is going to find out whether more widespread ABA will reduce the cost of autism for society, it says.  Summarised. It claims that this cost is £32 billion for the UK. £1.5 million per person, it says.  It links to the paper here by Knapp et al, 2009.  The actual figures in the paper are lower than this, curiously.  But, let's assume we start with the £32 billion.

In 2009, we had almost no idea how many people in the UK are autistic.
In 2017, we still don't know how many people in the UK are autistic.
Somehow, though, we 'just know' that all of them cost an average of £1.5 million to society.

Really?

In 2009, we had identified almost none of the autistic females.
In 2009, we had identified very few older adults who had missed diagnosis.
In 2009, we had identified almost no autistic People of Colour, mistaking autistic behaviours for cultural ones in many instances.
In 2009, we had identified almost none of the extravert autistic people, imagining that it was a condition involving extreme introversion and a fondness for libraries.
In 2009, we thought that around half of autistic people had a learning disability.  They don't. Few do.  http://bjp.rcpsych.org/content/bjprcpsych/early/2016/06/27/bjp.bp.115.174649.full.pdf refers.

In other words, in 2009, we had failed to discover nearly all the autistic people.  We imagined (incorrectly) that vast numbers of autistic people had a low IQ , could barely work and needed lifetime high support.  We had no idea who was working and who was not.  Not a clue between us.  

We still don't, because there's still no proper research.

I have pondered my 20 years in this field of work.  I work with autistic professionals across the UK.  I am blessed with autistic family members, and autistic friends.  I am delighted to work with autistic colleagues and be on social media with thousand upon thousand of autistic individuals.  Some verbal, some not.  Some with a learning disability as well.  Some not.  Most do not have a learning disability, by the way   - the statistic for that is way out of date also.

Of these, nearly all have tried their hardest to work.

Do you know what the barriers nearly always are?  It's the employers and the people who build and maintain the buildings.

It's not 'the autism'.

If I go to an interview, I'm expected to pass a social skills test. The interview. I cannot.  I would need the employer to hire me based on how good I am at the job.  They don't.  The social skills test is, however, how most people are hired.  Autistic people will fall over that proverbial hurdle nearly every time. "I am sorry to say that someone else had, er, more experience than you, honest guv", to summarise the rejection letters most get.

If I am then employed, I am almost certainly expected to socialise and work exactly like a non-autistic person, even if it destroys my creativity and ability to concentrate (i.e. the very things the job needs).  My appraisals will say that I am rude and unco-operative, even though I'm not.  I'm misinterpreted by non-autistic bosses, in other words.  I'm denied promotions and probably sacked for non-performance of some vague kind.  Or I am perhaps treated as a zoo exhibit and pulled out in front of audiences.  "Oh look, we've trained one to stack shelves.  Clap, everybody.  Isn't it encouraging!"  

If I manage to stay in the building, I'm expected to work under flickering fluorescent lighting (because it would cost 'too much' to replace one bulb with another, allegedly).  I'm expected to be deafened by noise, also.  Perhaps nauseated by intense smell.  Asking for any form of accommodation is seem as 'a cost', even if the end result is huge productivity and profit from me.

These are the usual barriers to economic success.  None of them are 'my autism'.

Yes, there are some autistic people who cannot work.
There are also some women who cannot work.
There are also some men who cannot work.
There are also some people with size nine feet who cannot work.

For those who cannot work, we absolutely do need good support, for them and for those that may care for them.  Proper funding.  Really good outcomes.  I and others strive for this in so much that we do, ensuring that each autistic individuals is able to lead a good life, with carers who are supported rather than exhausted.

But...an example.  Think about this.  Women earn, on average, less than men. Some women are in care homes, costing society huge sums.   Imagine that we responded to this by saying, "This is a tragedy for society.  We need to train the women to be male, so that this terrible cost for society is lessened".  Do you think that would help?

No, we need to put in place a working system that allows women to earn the same as men for the same work to the same standard.  We also need to base our arguments on something other than the equivalent of imagining that some vast number of women are in care homes, costing society a fortune.  Why this is acceptable for autism is not yet clear to me.

We do not run intensive behavioural therapies for women to turn them into men.  Do we?

We do not, I respectfully suggest, need to 'solve' this alleged financial crisis by running such intensive behavioural therapies for autistic people... to turn them into alleged-non-autistic ones, so that they can 'earn more'.  I'm mindful of the forthcoming research into such behavioural therapies and possible links to PTSD.

How did I solve the situation re money?  I set up my own business.  It's run for nearly 20 years now.  It pays a huge sum of money back into the economy in taxes, and benefits society in all sorts of other ways.  People like me are not in the data, because no-one has collected any.

My friends and colleagues, my family and contacts, nearly all make a contribution to society. Some work in very high paid jobs that they have somehow found a way to keep going.   Some have worked for decades in lower paid jobs, where they are allowed to -  doing fantastic work.  Some work tirelessly for charities and faith groups.  Some are carers for family, providing invaluable support for society by doing so.  Some are not able to work, but provide research, data, friendship, fellowship, humour, art, sculpture, music, poetry, books, articles. 

 A very small number are in care homes.  Many of these are care homes already using ABA or its related 'therapies' on them, and finding that the person is still in the care home afterwards.  Often, in fact, getting worse.  I work with care homes. I see it first hand.  I'm entirely unsure how ABA is helping them earn money.

We need to stop describing autistic people as a 'burden' to society.  Mindful of the recent Autistica research into the very high suicide rates for autistic people, and the emerging data around how constant negativity about us may cause this.

We need to stop thinking that 'autistic conversion therapy' is an answer, where 'gay conversion therapy' turned out to be a disaster.  I put it to my fellow professionals that ABA is going to turn out to be every bit as big as disaster as 'gay conversion therapy', and that we need to rethink our views of ABA rather fast.

If organisations wants to do this piece of research, I would start with...
A respectful use of language.  Nearly all autistic people want to be called autistic people, not 'person with ASD'.   
A proper balance on the expert panel, not just two unnamed autistic individuals amongst a roomful of non-autistic Professionals.  We have so many fantastic autistic professionals.  Use them.
A proper evaluation of whether this is even the right question to be asking.
A proper review of the underlying data on that project, starting with reality, not myths from 2009.
An engagement with employers, in a wider piece of work - making sure that they make it possible for autistic people to work whilst autistic.  Because making us pretend that we're not is not actually a strategy. It's a disaster, in my professional viewpoint.  For society and for the individuals.

Think differently.  Learn from us.  We're fantastic people and we are fed up with being described as burdens.

Thank you for listening.



The picture shows piles of money, and a red arrow pointing upwards.