Friday 22 September 2017

No, we are not all 'a little bit autistic', and this is why

Imagine, if you will, going up to a woman who has just experienced extreme sexist comments, and saying to them, "Ah, I know what this is like; we're all a little bit female, aren't we".

Yet, on a regular basis, autistic people receive the comment, "We're all a little bit autistic, aren't we".

Commonly, the person who is telling us this supposed-fact means that they like a bit of routine in their lives (as if this is what autism means).  Or that they are introverts (as if this is what autism means).

Being autistic is a specific thing.  In order to get a diagnosis, we have to fit the criteria.  Desperate need for routine or predictability, in order to avoid our brain overloading with unexpected sensory/social stuff - tick.   Different way of using social communication to most people - tick.  Very literal interpretation of language and rules - tick.

But, being autistic isn't that simple list.  Being autistic is also about a lifetime of experiences.  Experiences of exclusion, experiences of hate, experiences of struggling to access even basic things.  It's also about a lifetime of encountering the world in different ways.  Seeing, hearing, sensing the world around us in ways that are amazing, different, innovative.  It's about having a brain that is wired differently from birth, and stays that way for life (more or less), with all that this brings.  It's about a different culture and language, a different set of social protocols.  For many, a different sexuality and gender ID also.

You're not 'a little bit autistic' because you like your room to be tidy.
You're not 'a little bit autistic' because you like to spend time on your own with a book instead of going to a party.

That's not what autism is.  Autism is us, and it's our whole lives and all that we encounter.

Thank you for listening. 

The picture shows a woman, walking along a track in the countryside.  It has been raining. She is carrying a rainbow-coloured umbrella. For me, it signifies being beautifully different, but alone, a feeling that is all too common when autistic in a non-autistic culture.

Wednesday 13 September 2017

Autism - Business Strengths

A strange myth about autism and business?  That autistic people are 'out there somewhere', and that businesses have to find ways to include us.  That all of us are some kind of 'worthy charitable inclusion act'. That we are a cost.  I have news; you already have autistic people in your business lives.  They're probably the ones making you a profit right now.

Generalising - as of course every autistic person is different, and non-autistic people do these things too:

Using the internet?  Autistic people built and run that.
Using computers?  Autistic people design and build those and the software.
Using Accountants?  Autistic people are excellent with figures and deadly accurate.

Using Lawyers?  Autistic people are brilliant at memorising thousands of case studies and knowing precisely which laws apply to a situation.
Using Surveyors?  Autistic sensory abilities can detect problems in buildings well before anyone else can.  Autistic 'nonsense-detecting' means you're more likely to get a fair and straightforward, accurate property negotiation.
Using a creative team? Autistic designers, artists, authors are applying extraordinary strengths and abilities to 'think outside the box', to create something amazing.

Do young autistic people have a fair chance of employment?  No.  Most are never given a chance to show what they can do.  I'm working to change that.  I can't change that without being 'out' as autistic myself.   So, I am.  And if you care about young autistic people being given a fair chance, you'll want to support people like me, I'd hope.  Can all autistic people go into employment and do a fabulous job?  No, some have a level of difficulty that means this isn't possible.  Does that mean they are a burden to society?  Absolutely not.  Every autistic person is a person of value, bringing things to this world.  It's definitely not about 'can you make big money'.  But, it's important to say that many of us can.  Even those of us who started non-verbal and sometimes still are.

I run a business.  I'm autistic.  It's our business.  Fantastic team employed.  Offices in the Thames Valley and central London. Is it some sort of charity-supported social enterprise?  Nope.  This is Professional business, fully Regulated, competing directly with the 'big guys'.  And lovely competitors they are, too.  We're blessed with fabulous customers who know that we deal fairly with everyone. We have a brilliant team of Accountants, Lawyers and website gurus who are thoroughly nice, genuine, professional people.  

We love what we do.

"Surely you must be at a disadvantage, being autistic, Ann?', some say.   Nope.  It's just different.  Autism is why we are the only business of our type in the UK that has an unbroken track record of accuracy, to our knowledge (and the knowledge of our Insurers).  An unbroken track record of zero claims for losses.  

Is it sometimes hard?  Yes.  Because we get some myths about autism, and those aren't helpful.  Because we also get a very few people who are just plain prejudiced and who ignore the fantastic track record and decide they don't do business with 'people like that'. That's OK - there's lots of less accurate firms to choose from.  Because we get a very few competitors who think they'll win more business if they tell people some myths about we don't get the work.   Most are lovely, of course.

We love our business, and we love being the 'eyes and ears' of our clients, making sure that they make as much profit as possible, in as wise and moral a way as possible.  

If you find an autistic business, the correct phrase to utter is 'brilliant!'

You'll find any number of autistic people around you already.  Many may not know they're autistic.  Many may have hidden it for years, concerned about whether they will encounter an unfortunate reaction.

Make your own business 'autism including'.  Find out about difference, and about what autism really is (a sensory/social communication difference, present from birth, not a mental illness).  Get some training for the staff.  Brilliant autistic trainers available for that. 

Be clear that you value what people bring, and are relaxed about doing business with all kinds of people.  

Because together, we're stronger.

The picture at the top shows piles of coins, with a red arrow showing the amount of profit a business is making.  The arrow is going upwards, showing increased profit. 

Monday 11 September 2017

"Autistic People Aren't My Priority" - A Challenge for Christians

Tempting, isn't it - to think that autistic people are 'out there somewhere', perhaps in a care home?  Someone else's 'responsibility'.  Nothing to do with us, in our church.  Well, perhaps we know an autistic child, and sometimes nod in pity at the parents as we pass them in the street?

The picture above shows some of the reality, rather than this set of myths.  It shows a picture of a large church, with arrows pointing to all the contents and activities that could have had autistic input. If you are in a church building, you're in a building pretty much built, designed, fitted out and run by autistic people.  Looking at art or sculpture?  Quite possibly an autistic sculptor or artist did that.  Listening to music?  Very likely you're listening to autistic organists, choir members.   Listening to a sermon?  Is the Priest autistic?  The people in the pews, praying - some autistic.  The people offering welcome and friendship - some autistic.  Every person has something to bring.  Those praying with others - some autistic. The same as anyone else in the world.

Look around you.  In the pews, the woman, dressed neatly and smiling.  Autistic.

Go outside.  See the people sleeping rough under the bridge?  Some studies show 6 out of 10 homeless people are autistic.

Working with groups?  1 in 30 of their number will be autistic.

Autism isn't 'out there somewhere in a care home'.  It's been around you all your life.  You just didn't know the people were autistic.

So, when I hear people in our churches say, "Autistic people aren't my priority - I don't have to know anything about them", I gently challenge them.   What do they mean by that?  What fears or misunderstandings lie behind that statement?  How do we work together to find out how to break down those barriers?   How do we make better use of the fantastic gifts that autistic people bring to every group, if given the chance to do so?  

I am blessed to be working with churches and church leaders in many places.  Training clergy.  Advising on access.  Collaborating on projects.  All as an external consultant, not a formal adviser.  I'm autistic.

 And, one day, soon, I hope, churches will be proud to look round them at all we already do for God and community, and say, 

"Autistic people are my priority".

Thursday 7 September 2017

Autism: Verbal/Non-Verbal. A False Binary

The strange myths and illogical beliefs around autism include verbal/non-verbal.  The idea that either we can totally not speak, or can always speak.  It's nonsense.

For a start, if we look in the DSM V diagnostic checklist for autism, speech, or lack of speech, isn't even part of autism now.  It's a different classification.

A number of autistic people, me included, also have speech and language difficulties of some sort. 

What do we mean by speech/useful speech?
Do we mean that a child has no ability at all to say a single word?
Do we mean that they also cannot write or type words?
Do we mean that they can speak sometimes to say individual things, but are non-verbal at other times?
Do we mean that they can speak for a short time in a social conversation, then cannot manage to speak further?
Do we mean that they can repeat individual words over and over?   Or, perhaps phrases over and over?
Do we mean that they can put phrases together, for example ones learned from TV or radio, and attempt conversation that way?
Do we mean that their difficulties with speech mean that they cannot defend themselves in an argument, or ask for things they need in shops and at the Doctors?
Do we mean that they have difficulty with some language, e.g. social concept words?
Do we mean that their voice tone and pacing is so unusual that people cannot decode it easily?
Do we mean that they have delayed answers to things - perhaps responding minutes or hours later?
Do we mean that they go to build a friendship with others using words, but it goes horribly wrong?
What do we mean by 'non-verbal', and why are so many insistent on describing language as just this strange binary :  "Verbal/non-verbal". 

Me, generalising....I could sometimes repeat individual words as a young child.  I could repeat individual phrases.  I learned to copy down words and phrases.  Eventually, I could piece together enough words and phrases to write stories.  I could sometimes read out words and sentences, without really understanding what it meant.  Mostly, if asked, I'd hide.  I could also attempt to say very short answers with others, e.g. yes, no, please, thank you.  But in any conversation, up to age 10, I was baffled.  And anxious.  And mostly non-verbal.

I would try to decode what the other person said.  My brain thinks in pictures, so I had to visualise it.  Then, I'd visualise my answer.  Then, my brain would have to try to find the right combination of words and phrases to respond. That took a long time.  Sometimes, nothing would happen - I'd go to talk, and there was no response from my body.  Or I'd say something garbled.  Or I'd say a response so late that it made no sense to anyone; the conversation had moved on.

People thought I was shy.  Or rude.  Or both.  I spent two years in a class in secondary school, and the teacher during Parent Evening had no idea I was one of his pupils.  He had never heard me speak.  I mostly didn't.  I was too anxious to attempt it, because it would go horribly wrong most of the time.

Some days, as an adult, I'm hardly verbal.   Even though I'm an extravert and love being with people, sometimes I cannot speak.  I can nod.  Maybe I can say the short word answers - yes, no, thanks, please.  Maybe I can think of some stock phrases to say.  (Hoping they're the right ones).

Other days, I can talk really well.

Much depends on how exhausted I am.  Whether I feel well.  Whether I've overloaded myself with sensory/social input.
Can I in theory ask for things in shops?  Yes. 
Can I always ask for things in shops?  No.
Can I in theory explain an illness to a Doctor?  Yes.
Can I always explain an illness to a Doctor?  No.
So, am I verbal?  Am I non-verbal?  Yes.  It's a yes to both things.

The moment I'm in a conflict situation with an angry person, I'm stuck. I go to speak, nothing happens.  Nothing at all.  The moment I'm in sensory distress, I go to speak, nothing happens.  The more tired I get, the more I put the wrong words in sentences, or mispronounce words randomly.

I find workarounds.  Making sure I'm in a good sensory environment.  Resting before and after a speaking engagement.  Talking on subjects I know, where I already know what to say and how to say it.

Most people would never know of my struggles with language, because they are unaware of the absolutely huge effort I put into disguising it.

I wish more professionals would understand that autism is not a set of binaries; "high functioning/low functioning", "verbal/non-verbal".  Everything is a four-dimensional spectrum of abilities, which change over time and can vary day by day/hour by hour.

Be aware that some people - autistic or otherwise - will struggle with some speech ability.
Be cautious about picking on people to read something out, or contribute verbally.

Allow people to contribute in ways they can handle.  It might be sign language.  It might be written.
And, be aware that young people who are 'quiet' may actually be struggling to speak.

The picture shows a representation of a group of diverse people.  The ability to speak is just as diverse.

Sunday 3 September 2017

Pay for Autistic Expertise: Equality, Respect.

The photo shows a hand, with one coin in the palm of the hand.

I've been discussing pay, amongst autistic advocates, speakers and professionals.  It seems that a lot of autistic speakers at conferences are being paid almost nothing, or nothing.

I am speaking from my own position of 'privilege', as an autistic business professional who is paid a substantial sum in outside industry.   I also work within autism, as a national speaker and consultant, from time to time.  For various groups.  Many of those are wonderful, and who treat me and others very well.  So this is not a complaint by me about my own treatment.  Here, I'm using my voice to signal a huge area of general injustice.  I want autistic expertise to be treated with more respect. I know so many fantastic autistic speakers and other professionals who are truly given the message that they are worth nothing.  It has to stop.

Autism Conferences:

There are a number of 'superstars' who command high fees.  Sums in excess of £2000 an event.  Nearly all of these appear to be non-autistic diagnostic professionals.  Or, diagnostic professionals who may be autistic, but are not disclosing this to anyone - so will get the 'privilege' from others that goes with that.

What do I mean by privilege?  I mean that life is often easier for non-autistic people, compared to autistic people.  There is no automatic expectation of incompetence, low IQ, etc.  There is usually no expectation that non-autistic people will accept zero pay "for work experience", as a main speaker at an event.  There are lower chances of assault, abuse, defrauding.  Getting respected as a professional is generally easier if you're not autistic.  Getting book deals at a fair rate of pay is easier.  Getting media performances at a fair rate of pay is easier.  I've had a lot of conversations with Psychiatrists and Psychologists who are autistic, and have never disclosed it.  "My career would be over", said more than one, to me.   Fair point.  I'm not about to force people to disclose autism.  But, in this blog, anyone who isn't 'out' as autistic, I will describe as 'non-autistic', because that is how they are being treated by others.  

(I am very aware that masking autism has its own cost - I did that for too many years, and it was exhausting beyond measure.  Now, I'm positive about autism and the things we bring to the world, and I want others to be positive too.  Taking that step to be 'out' has its own cost.  I chose it, because I want to demonstrate what I believe in.  I'm thankful that I am in position to do so.  Others may not be.  I am working towards a world where there is zero cost for saying "Hi, I'm autistic".  Work with me on that, please, if you can.)  

Let's look at some example numbers.  At a national conference, say there's 400 people.  Lets say they are paying £100 each to be there, on average.  (Often it's a lot more).
That's £40,000.  
The organisers have to pay for the conference centre and food/drink, certainly.  Plus staff time to organise it.  Plus technology.  The usual things.   That costs (say) £15,000.  I also organise conferences.  That's not a guess - it's a fair estimate.   
So, in this example, we have £25,000 'profit' to pay the speakers and help run the charity/company, etc.   That's a lot.

We know that the diagnostic professional non-autistic speaker can command a fee of some £2000+.  At big international events for business, keynote speakers can get anything up to £500,000+.  No, really.   Half a million quid for the 'big guys'.  The famous TV stars, etc.

Guess what the autistic speakers get for a national conference.
I mean autistic speakers who are bringing equivalent experience.  Equivalent expertise.  Equivalent new research.  Equivalent time and training skills.  

On average, about £200, it seems.  Was that your guess?
Often, only travel expenses.  Or a book token.

It takes several days of time to prepare for a conference.  Research, slides, background reading.  The travel time.  The time there.  The time to recover.   All for a book token?

Better than that, the non-autistic 'keynote speakers' often get their own room, their own dedicated staff.  All the autistic speakers get to share a not-as-nice room together.  The non-autistic speakers even get business-class flights paid for, in some cases.  Lovely.

The billing for the event will often read, (summarised...)
"Come and see the amazing Non Autistic Keynote Speaker.  They have written books, done TV shows, they're amazing!"
(Oh, by the way, some autistic people will speak too - I think one of them is called Sid, oh wait, no, perhaps I mean Fred, not sure, but they'll talk to you about maps or something for a few minutes)."

I exaggerate only slightly.  Oh my.  Can you imagine going to a conference on, say, women.  There's the keynote speaker: "Come and listen to the Amazing Man speaking about women!  (Oh, by the way, some women will speak too - not quite sure what they'll say yet, but isn't it nice of them to turn up - we'll give them a round of applause for doing so).  I bet you'd be horrified.

Be horrified.  Because you're often watching that happen, in conferences about autism.

"But people won't pay to listen to autistic speakers, Ann", say some organisers.  "We need the money, and they will only pay big money to listen to non-autistic diagnostic people.  We can't afford to pay the autistic people a lot.  It would take out all the profit. "

Absolute nonsense.  If you can't afford to pay people, put the price up to a level where you can afford to pay them.  Jolly well make sure people respect and appreciate the expertise of the autistic professionals in that room.   If you have £3000 to pay all the speakers, do not give £2000 to just one person, and £100 each to the others.  Pay them all a reasonable sum by dividing it more evenly. It's not hard to find solutions that are respectful and appropriate.

The reality is that most non-autistic speakers are not saying anything from lived experience. Yes, they have met a lot of autistic people.  They borrow our ideas and make money out of them, a lot of the time.  And...their work is often 'medical model', in most cases.  What do I mean by that?  I mean the idea that autistic people are patients, in need of fixing.  Possibly to be paraded in front of the audience as examples to show how marvellous the diagnostic person is.  ("Living zoo exhibits"). Nothing more.  It lacks credibility in what is now one of the fastest growing, most dynamic and pioneering fields of human justice and equality.  

Autistic people have our own 'voices', whether spoken or through technology.  So many are on low pay because they are taken advantage of, not because they have no skills, no expertise.  So many are trapped on benefits, unable to earn more than a token sum without ruining their benefits pay...and never given the chance to earn a living wage.  Not by any of the multi-million-pound industries that benefit from 'therapies' and 'information' about us.  Extraordinary.

We have our own expertise to bring to events.  National professional-level speakers at major events who are bringing the very latest research, from actually-autistic people, as actually-autistic people.  And, the voices of those who are talking about their lives are of huge worth.  The cost to them, of standing on that stage, revealing such personal and possibly humiliating detail, can be huge.  Days of preparation.  Days of recovery for some.  To be paid nothing?   Or a token bus fare and a book voucher?  Is this how you want your own young autistic person to grow up, thinking that's all they are worth?  Of course not.  "But who will look after my child when I die?", so many parents say.  Your child could, in most cases, look after themselves, financially - if only we would invest in making life doable, and in paying autistic people a living wage for equivalent work.

Many attendees at conferences have been taught that only non-autistic diagnosticians are worth paying for.  They hear it from the organisers, and they believe it's true, I would say.   It isn't true.  Hearing from diagnostic professionals can be a great thing.  Learning from therapists can be very valuable.  But, if they had the answers, why - 20 years on - are we still in the same 'low-pay, high-abuse' zone, as autistic people?  It's because we are failing to value autistic people as people, in my view and experience.  As people worthy of respect.  
Do some people work for nothing, for friends and charities, by choice?  Yes.  And, if it's by choice, that's fine.  I do, sometimes. Anyone, autistic or not, could make their own personal decision not to be paid, or to get a low fee.

What this multi-billion-pound autism industry is often doing is basically lying to autistic people about pay.  Making autistic people work for almost nothing, pretending it's all they can afford.   Well, that's exploitation. 
If our conference organisers are telling attendees that only non-autistic people are worth paying, that's prejudice.

It's injustice.  We should not be supporting it.

Next time you go to book a conference, ask whether the autistic speakers are being paid a rate that reflects their time, effort and expertise.  Perhaps don't attend events where we are on stage as 'zoo exhibits' for a non-autistic person to use to make themselves look great.  Or which show autistic people only as alleged patients to be fixed.  We are not ill-with-autism.  This is a neurodiversity.  Yes, some have multiple disabilities/conditions as well as being autistic, and for them, life is very tricky.  I'm talking specifically about autism here, though.

If you are a superstar non-autistic speaker, reflect on the message you're giving to others.  Are you showcasing the skills and talents of autistic people?  Are you 'boosting' the voices of autistic fellow professionals?  Are you demonstrating really good co-working, skilling people up to work alongside you?  Making sure they are treated fairly?  Use your power. Use your privilege.  Help change the view of the world with us.

Autistic people need to live.  We have bills to pay.  We don't live under hedges and eat berries between conferences; We're not all in 'care homes', wheeled out for conferences.  Only 1.6% of autistic people live in supported accommodation.  I bet you thought it was more than that.  Most of us have apartments, houses, families to support.  We need to buy clothes, food, toiletries, same as you do.  No, a book voucher will not buy those things. Failing to pay us equals unemployment . Poverty.  Short lives. 

Pay good autistic people.  
Because you don't want a future where your child is worth nothing.

Thank you for listening.