Sunday, 14 January 2018

Is love political?


This week, I've been blessed with so many things.

The love of family, wonderfully autistic.

The caring of autistic friends and colleagues.

The caring of non-autistic friends and colleagues.

The chance to collaborate together on plans for a wonderful event for disabled and neurodiverse people.  About our Christian faith, and what we bring each day to it.  In prayer, in love, in compassion, in friendship, in skills and work.  About what it is to be representing Jesus, embodying that-of-God-which-is-like-us.  What people learn of God's nature by walking alongside us, listening to a wisdom arising from the journey.

In quiet moments of reflecting, sat with autistic and disabled friends as they tell their stories of life.  Of sharing hope, and pain.  Of encountering such depth of feeling and yearning for a life made easier.

In heartwarming moments, looking at autistic art, poetry, scuplture, essays, research.  Of all kinds, from all manner of people. Each shining a light into the human soul.

In preparing a simple worship session for a church group, as I often do, working with materials from our Bishop and reflecting on God's message for us.

In patiently caring for those in my family who rely on me to guide and support them, as they do for me too.

In sheltering those who return from 'the front line' of autism work, bruised in spirit, not sure if they can go on.  And receiving that same shelter during exhausted times of my own. 

I'm one of so many autistic people who yearn for a world of caring and love, where autistic people can thrive alongside our non-autistic friends.  

That's my motive.

Just that.

Is it political?  Perhaps.  But no more than any other love could be.

Will you join people like me, as we walk towards that goal together?



The photograph shows a wooden shed door, faded and worn.  On it hangs a heart shape made of rough twigs, and within that heart shape, another pale smooth pottery heart hangs.  Why did I choose that image? Because it speaks to me of the unexpected places to find love, in all its forms...if only we look.

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 hate and 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.  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 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, 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..., 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.
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 they 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.

Monday, 20 November 2017

Autism: About, "I want my child to use spoken words so they can have an easier life"


"But my autistic child has to learn to speak using words.  It's how to ask for things and it's important for a successful life."  I hear this kind of thinking, a lot.

Most autistic children use spoken language.  Either at the usual point in their young lives, or later on.  Some do not.

There's a myth that forcing us to use the spoken language and social signalling of non-autistic people is 'better'.   That it will lead to better outcomes.  That it will lead to greater respect, more independence.

I'm not so sure. If that's the reality, how come so few of us are employed, and have such bad outcomes?  We are finding that supposedly 'fixed' autistic people have the highest stress, the least support, the most chance of suicide.  The outcomes are often worse, not better.

I grew up as a mostly-non-verbal child.  I could use repeated phrases, without knowing what they meant.  I could write words, then eventually sentences, eventually whole stories...but I couldn't really speak.  I'd go to speak, and nothing happened.  The words would be carefully arranged in my brain, each one thought about and matched up to my brain's picture-imaging. And to my brain's remembering how it sounded when someone else made those noises.   I only think in pictures, not words, y'see.  But...I'd go to speak them, and all sorts of hell would happen.

Maybe I couldn't speak them at all, and was left floundering like a gasping goldfish, moving my mouth but nothing happening (result - hilarity from onlookers).

Or, I could speak some words, but not the whole thing (result - hilarity from onlookers).

Or, I could speak all the words, in the wrong tone of voice. (Result, chaos or hilarity, or people thinking I was some pedantic professor-type or someone very Posh).

Or, I could speak the words, but in the wrong order or with some mispronounced as nonsense.  (Result, chaos or hilarity or people totally misunderstanding me and getting really angry).

Or, I could speak the words, in the right order, but at the wrong time.  The conversation has moved on.  Result - chaos, misunderstanding, or hilarity.

Or, I could speak the words, in the right order, at the right time, without making the right eye contact and face expressions.  That requires micro-second accurate automated control from the brain. Otherwise you do a good impression of a slightly stary scary robot. See 'uncanny valley' articles aplenty on this. Look it up.  Yes, that's what we're training autistic people to resemble.  Not good.   Result - people feel uncomfortable and a bit freaked out, and edge away from me.

Or, I could speak the words, and come out with a sentence that insulted everyone in the group, quite accidentally.  Their understanding of what was important in that sentence...and mine...were different.  I didn't know the rules.

I'm still sometimes non-verbal.  I run a company.  I can run a company AND still sometimes be non-verbal. Shocking, isn't it.  Arguably, I could run this company without saying a verbal word to anyone at all, if I so wished.  I do some speaking because I enjoy having a go at it.  But my brain can only do so much, before it hits 'can't do this any more'.

You can see me writing on here, yes?  I can say what I mean, in writing.  More or less.  Goodness me, I can get misunderstood even in writing - autistic culture is one of accurate info, short or no social chit-chat, and adding more and more data until people understand.  All of that can be a cultural misunderstanding of epic proportions, of course.  But, in writing, I can usually 'speak'.  If I am out of ways to write legibly, I am in deep crisis. I've been pushed into that by intense and relentless mockery and bullying online, on some occasions.  Horrifying stuff to experience.  (Yes, online, we need to make sure autistic young people are as safe as possible.  But that's true for every part of life, not just online.)

I can ask for things, in writing.
I can explain things, in writing.
I can meet people, in writing.  Real people, online.  Real people who are able to say real things to me, in writing.
I can then choose to meet safe and lovely people in person, by setting things up, in writing.  And meeting them in ways that I can cope with.

But, if I am asked to negotiate even the simplest contract using just spoken words, I'm often stuck.  That combination of being slightly-out-of-synch with body language and word phrasing means mostly I end up being taken advantage of, in negotiations.  In writing, I can hold my ground on fairly equal terms.

So...I work with others who can speak hugely well.  They can be my voice.  And my 'verbal bouncers' for people who try to take advantage, assuming that speech hesitancy equals cluelessness about business.  We have amazing lawyers and other professionals who work with us, checking what's what.  My autistic brain is fab at detecting things-that-don't-make-sense in writing and figures.  Better than most others, in fact.  Not boasting, just saying how it's possible to run one of the companies in the UK that has a fantastic reputation for professionalism....whilst autistic.  Because, together, we are a team.  Together, we make it work.

I can train others, speaking in front of huge crowds, on subjects I know.  It takes me days to prepare, and days to recover.  People see the very verbal Ann and think it's easy.  It's hell, using words.  No, it is.  It's so exhausting. It's why our team and supporters at the events keep people away from us in the breaks...we literally cannot speak all day long without a break.  

Such a relief to be with my loved autistic family, friends and colleagues who allow me to speak in ways that I can cope with.


I see a lot of autistic people who are forced to use communication systems that just exhaust them, year after year.  A bit like insisting that a wheelchair user must stand up each time you enter a room, to show you respect.  Time after time.  "If they don't show respect to you, and to everyone they meet, by standing up each time, then people won't respect them.  I'll get someone to train them to stand up, no matter what pain or exhaustion results each time. This is good for their future".  It's similar to that.  With acknowledgement to wheelchair user friends that quite often that kind of thinking is exactly what they get, too.  It's also like forcing Deaf children to speak, and not allowing sign language and other communication methods.  Again, the Deaf communities have had plenty of that kind of behaviour forced on them.

How about we teach that it's OK to show respect in words.  Or pictures.  Or sign language.  Or any other form of good assistive communication?  That it's OK to make friends using written words.  That it's OK to ask for things using something that isn't words.

How about we teach that it's OK to be autistic ...and that everything we do doesn't have have to mirror your way? 

If parents and carers want good outcomes for their children, they need to build on their strengths, not exhaust them and force them to be something they're not.

I show respect and love differently.  And different is OK.

Thank you for listening.


The picture at the top shows three children gathered round a computer tablet, using it to communicate.

Tuesday, 7 November 2017

"Autism-Friendly Event" What do we mean?



I see a lot of venues starting to offer, "Autism-Friendly" events.  

Some are very good.  For example, perhaps they think about holding the event in a quieter location, using non-flickering lighting.  Maybe they think about offering a quiet 'escape space' for those needing downtime.  They have staff who are trained on modern understanding of autism, and are relaxed and enabling with people.  They do not hold the event in a room filled with decor closely resembling an explosion in a paint-and-pattern factory, with jet-engine-noise from air conditioning and bathroom hand driers....with no way to get away from that chaos. They don't have to make every inch of the venue noisy for each and every one of us attending.

They can think about advertising in ways that most autistic people can access.  They provide enough advance info, plans, photos etc to give confidence about sensory hazards that still exist - and how to avoid them.

But, some events advertise themselves as (for example) "Autism Friendly Performance for You and your Children With Autism.  We won't mind if you child runs around making lots of noise". 

Some puzzlement about the phrase, 'Children with autism'...I mean, do they bring the autism with them in a separate bag?  Are they children with whiteness, or children with Blackness?  What about children with maleness or femaleness?  Most autistic people like to be called autistic people, although one needs to respect individual differences of opinion, of course.  Be aware of autistic preferred language when advertising generally, and be ready to adapt that for individuals.


The thing is, though, most autistic people aren't children. Most of us are adults.  Most of us do not run round things, making lots of noise.  A good number of us are very very quiet and well behaved indeed.  Many are professionals, many are older or elderly.  Many are middle aged mums, like me, fitting in events around our jobs and family lives.

The picture shows how a busy, noisy event looks to my particular autistic sight.  So difficult to navigate and make sense of. A chaos of colour and pattern.  I am blinded and deafened. Exhausting.  

What a good number of venues mean is, "We will turn the lights and volume down a bit, and let young children run around wildly for the whole time they're here, making as much noise as they like...and we'll guard the exits".

There are occasions when that is important.  A number of events are specifically for lively children who also need a lot of safety as a result, of course.  But, some other types of venues also think this is what 'generally autism friendly' means.  No. If anything, it is a peril for many autistic people.  For example autistic young people and children who need quiet, and find lots of racing-about to be very overwhelming and frightening.

Also, autistic adults who need quiet, and aren't able to cope well with a load of children screeching and sprinting around them. 
Autistic adults or children who have mobility difficulties, and who may be knocked flying by fast-moving autistic children.


This is why it is important for autistic people to have access to a range of events, and for safety to be thought through for everyone.  

Not least because many autistic adults wish to attend all sorts of events.  Events showcasing art, sculpture, ballet.  Concerts. Religious services. Shops.  Restaurants. Theatres. Exhibitions.  Consultations.  Meetings.  Lectures.  In fact, every single event and venue that everyone else gets to go to.

No, we don't need a separate autism-event for each of these.

We may need advance information of what's ahead.  We need that information to show us the main sensory hazard areas, and the quiet area to get away from those. Get autistic people to help spot the sensory hazards in your venue.  Photos and plans on a website are great.  We need to know that the staff aren't going to think we're rude for not making eye contact, or being unable to speak using clear language.   That's good basic autism knowledge and information.  Those sorts of things enable so many of us to access things all day, every day.  

And...it enables everyone else to feel comfortable too.  People who are nervous.  People who are shy.  People who are exhausted.  People who are new to the venue.  People who don't have English as a first language.  Everyone knows what's ahead.

It helps venues get the business of an extra million-plus autistic customers in the UK.  Plus their families and friends, their colleagues and allies.

Most autism access is very easy.

So, yes please to having places where parents don't have to worry about their children exploring and making noise.  That's important.  But please don't mistake that for your organisation ticking all the boxes for 'autism friendly'.   

Most of us are not children.  The rest of us would love to attend your fabulous events and venues, too.