Worth more than gold

It's a difficult one, worth, isn't it.

What's someone worth?

What's someone like me worth?

 

Autism has its wonderful naivety.   If someone asked me what someone like you was worth, I'd say, "More than all the gold in all the world".

 

But if someone in some faith groups is asked what I'm worth, the answer often comes in at, "Well, not as much as £6"  "£4 is too much, obviously"  "Really she should be free, or be paying us for the inconvenience of enduring her and her disability needs".

 

As if we are just lumps of meat with no feelings.  As if being given this message day after day would have no impact. Over a lifetime. 

 

It's a difficult thing, standing up in front of a group of people as the real live example of 'not worth anything'.  The days to prepare ourselves, and the time afterwards to recover.  Explaining to people that I cannot even see who they are.  Narrating the difficulties I have with everyday life.  Talking about the way we are targeted through that naivety. Taking all the highly personal questions about my private life.  Somewhere deep inside, we end up feeling dirty, and used, and worthless during the process of being the 'live exhibit'.  As trainers, we fall out of training classes for some groups both delighted to have had the chance to change society....and exhausted and demoralised beyond measure.   Because there are so few support mechanisms in place, we try to 'prop one another up'.  Not many have the strength to keep getting up and doing the job.

But there's so often someone who pops up, brightly, to say how grateful I should be to have been allowed to even apply to do their work for less than my costs.    I should say thank you nicely, they prompt.  Where are my manners, eh.

There isn't anger behind my response.  There is just a numb despair, and tears.

 

We do it because we don't want a world of pain for our youngsters any more.  I also do it because I believe God loves people like me, and values us.  And this is the only way to get the starting point.  The only way to get people to move past the 'they are not worth our cash' thinking.  No-one autistic gets rich from doing autism training.  Many of us give our time for only enough to feed ourselves the basics from one day to the next, if it makes a difference. Quite often, even that is 'too much', it seems.   What are we worth?

You are worth more than all the gold in all the world.  Yes, you.  

And so, my question to you, is....what am I worth to you?    And to God?  

One big question to pray on, deeply, over time. 

 

 

 

 

 

Non-Autistic Autism Experts: How to get it right...and wrong

The great thing about the last couple of years?  Autistic experts are now equal leaders in autism work.

For decades, we were too often treated as lab specimens or patients by far too many non-autistic professionals.  Not all did so.  A good number have always been marvellous partners for us in the work.

The others?  Many reached some extraordinary conclusions about us, nearly all of which were entirely mistaken.  For example, that we lacked empathy.  Unfortunately for them, they'd missed that we cannot see people's faces properly.  No wonder we couldn't get the response right; we couldn't see whether the person was sad or happy.  No different to accusing a Deaf friend of lacking empathy, because they couldn't hear your tone of voice.
Then we had the myths that it was normal for us to spend half our day in meltdown.  "Oh, that's autism", they'd say, nodding in a wise way over their pince-nez, as we writhed and screamed in pain....and some professionals taught parents  and educational professionals how to restrain us and punish us for being in pain. "Those autistic people are trying to control others with their nasty behaviour!", they claimed.   No.  Unfortunately for them, they had missed all the sensory processing pain that we experience. Then would put us in schools, colleges, workplaces and residential settings that caused intense internal pain for us.  They had missed that we were effectively being asked to be in pain all day, every day.  They had it totally wrong.  That's what happens when some don't have lived experience of autism, and don't listen.

After so many years of clumsy mistake-making, little wonder that there is a new respect for the autistic professionals.  People who have a lived experience of autism.  People who work together with non-autistic professionals to bring about the best possible training.  And the best possible consultancy.  And the best possible science, creativity, art, music, teaching....  People who use autism's strengths of honesty, integrity, persistence, creative thinking and accuracy to ensure the very best ideas and teamwork are available.   People who know how to value those who communicate differently, and can work well in teams of autistic people from all parts of the spectrum.  There have been a good number of non-autistic professionals who can do all of those things too, of course.  But they will never know what it is like.  It's like hiring in white people to speak for the BME communities.   Or hiring just men to speak for women.

How to be a fantastic non-autistic professional?  And what to avoid?
Treat us like the human beings we are, not as a patient.  We are not 'patients'. We are people with a different brain wiring design, from birth.  It has strengths as well as challenges in a loud, busy world.  Be properly, genuinely friendly with us.  If we are colleagues, then yes, we want a friendly working relationship with you. 
Treat us with respect.  Value what we have to offer, rather than dismissing it as irrelevant.
Listen to what we say, and assume that it is the truth. No, we are not likely to be lying to you.  No, we are not likely to have a poor grasp of reality.  We are hugely accurate, if allowed to answer in ways that respect our needs.
Stand up for us when others seek to humiliate us and treat us as if we are worth nothing.
Assume that we are worth our pay.  We are not 'grateful' to be allowed the chance to work for nothing.  Or for a discount.  What we offer is as valuable as it would be from anyone else.
Do not lie to us, thinking that it doesn't matter what you say to an autistic person.
Do not mistreat us, thinking that we will never be believed, so what does it matter.
Include us in meetings and events.  It is never OK to leave us out, claiming it was 'too difficult' or that you would 'tell us what happened'.  Find a way to make that meeting autism-accessible.  It's not hard.
Find out our needs.  Respect our communication, sensory and routine-based needs, in particular.  People who force eye contact on us and never give us a chance to process what's being said?  That's not OK.  Meetings where everyone chatters away and we can hear nothing of it?  How is that fair?
Do  not throw your Titles at us.  So you have a lot of letters after your name and are a Dr or Professor?  Perhaps we are too.  But we aren't bothered by such social constructs.  Generalising, of course.  We don't judge the worth of a person by their title, their bank account balance, their accent or which University they went to.  Those are not relevant to the worth of a person.  We tend to be passionate about fairness, about justice, about creating a world where all are fed, warm, loved and safe.  I get a lot of people who assume that I must be stacking shelves in a supermarket with careful supervision.  I run a £3 million a year Professional Practice.  I'm very autistic.  As a child, I was that girl that rocked in corners and couldn't speak. 

Learn.  Keep learning.  Keep observing, because you are learning from the real experts.  The people who now train you in how to diagnose autism. The people who now provide you with the written materials you use to get those qualifications.  The people who work alongside you in industry and schools, in academic work and creative pursuits.  People of all kinds and personalities.   The quiet ones who use assisted communication or cannot use language?  Think they have nothing to offer?  Look again.  Keep looking, keep learning.  There is such a wealth of wisdom, friendship and joy to be found.  If only more people would stop putting us in huge pain and fear.  If only building designers would take autism into account, and not just wheelchair users.

My fabulous autistic colleagues are now respected as co-leaders in this field of work, alongside you. That's to be celebrated, and respected, and rewarded with proper pay and proper employment.

On making it impossible for us to do a task, then blaming us

Over the decades,  as an autistic adult, I've had some unusual experiences with non-autistic leaders.
Many good experiences, with many good leaders, of course. But goodness me, there's been some very odd thinking, from a few.
I am a very persistent person.  It takes a lot to get me to back away from something.  It's never done lightly.  This is common in autism; persistence, dedication, integrity and accuracy are our 'thing' (generalising).  Yes, autistic people have our fair share of challenges to overcome, but it usually comes with good stuff too.

I've co-owned and run a Professional Practice for more than 15 years.  That involves immense dedication, teamwork, accuracy etc.  I won't claim it has been easy.  But together, we've created something that we are so very proud of.
I've been married for 27 years to a lovely other half and we have brought up a marvellous 22 yr old autistic son.  Those things take dedication and integrity too.  Especially for someone like me who was born with a different sexuality.
I was Trustee of two major charities.  One, for many years.
I was Governor of a large Primary School for many years.
I've worked as an autism adviser for some 20 years, doing consultancy work and training for a large number of organisations including the Government, Royal Collection, National Trust, BBC...in fact, most of the 'big names'.
All of it takes teamwork, integrity, persistence and having something to offer.  I could do none of it without the fantastic people who work with me, or lead those groups and enable me to give of my best.  I'm not the most important person in any of those settings - but people want to know what I can bring.  And I'm happy to do that.

And yet...the unusual experiences have been there.
One large group who have spent the last eight years trying to convince themselves not to talk to me, in case I am dangerous or too much of a burden (No, I kid you not.  It's been entertaining, and worrying, in equal measure).


One other large group who invited me to be Chair of their enterprise...dumped the whole job and two others on me without a moment's handover...held meetings in a totally non-autism-friendly way... and wondered why I handed the job to someone who could do it in that format.  


Then blamed me for being 'unreliable'. And told others not to use me.


Let's look closely at that.  If people make it impossible for me to do a job, due to my disability, then it's me being unreliable?


So, by that logic, if a group hires in a Chief who is a wheelchair user, and then they hold all the meetings at the top of a flight of stairs, it is in fact the fault of the wheelchair user.  Is that right?  Well, then it's not right with autism either.


Let's not do this stuff to autistic experts any more, please.  If people want our skills and talents, our integrity and accuracy, then their group is going to have to show some respect.  The same as we show to them when we communicate in their chosen language (not ours), in their meetings which are held on their terms (not ours).


Blaming us for the errors of others is truly not OK.  It's the opposite of enablement.


If you are going to ask an autistic expert to help, make sure you ask what they need - and make sure you can offer that.  Do not ever think to blame them for not being able to access something.

Equal Treatment is Not Equal in Effect

In faith settings, sometimes someone says to me, "Oh but we treat everyone the same, so that's evidence that we're fair". 


It isn't fair to treat everyone the same.  Let me take an example:


Disability advisers.  Often in church groups, someone has the idea that a region needs a disability adviser.  Not such a bad idea in itself. After all, 40% of parishioners are disabled.  The Archbishop has, wisely, said that we need to focus on disability as a key issue.  In the CofE, for example, there are an average of 11,000 disabled parishioners turning up to church in every Diocese.

Disability is a big subject with big money.  It's why disability advisers to industry are paid a very good sum and are properly accredited after extensive training.  Access is a legal liability, the same as it is a legal liability to have fire extinguishers and buildings insurance.  The court awards for failing on disability access top £1 million a case in London, for example.  Not because disabled people are nasty sorts who like suing people.  But because they are already often struggling to cope in unfair systems and inaccessible buildings.  Already perhaps unwell or in pain.  And making their lives so hard that they suffer further injury or distress - carelessly - is not OK.  The Courts are quite clear on this.  Places have a legal duty of care, even if no disabled people attend.  It has to be planned for in advance, in an expert and considered way.  That's the law, and churches have to follow it to the same standards as shops.  Well, they do.  I don't make the law.  But I do think that's right.  Jesus was very loving towards disabled people and spent so much time with them.  It should never ever be a burden to include the marginalised at God's table.


Disability is also complex.  There are many major disabilities, all with different needs.  Almost none of them have to be expensive to sort out.   But you need people who understand autism, learning disability, mobility issues, visual impairment, hearing impairment, mental health, coeliac disease, epilepsy and a good few other more major ones.  Proper training skills, expertise in writing materials, knowledge of buildings access needs for each disability.  It takes a whole team working together to do a proper job for a region or Diocese.  It needs someone who can put together that team and communicate really well with every department.  Properly enabled and with proper authority.

Often, regions decide that the right person for the job is a solitary disabled person, working a couple of hours a month.    Then they hunt around for cash to fund it, and decide they can't see any immediately.  So the next idea is that the person will work for free.

"But that's not fair!", some people will say.  "Oh yes it is", they respond, "After all, we don't pay some of our clergy".


There it is.  Right there.  The thing where equal treatment is not equal.

Disabled people already, as a group, live in poverty.   In some disability groups, only 5% are in full time employment.  They already mostly live with pain or loss of function.  They already live with bullying, marginalisation and abuse.  They already mostly live on the margins of church, often unable to access it.  They may well have children who also live with disability in a society that doesn't adapt for it.   And some turn to this extremely disadvantaged group and say, in effect, "If you want to go to churches, you can work for free to make them accessible".


Equal treatment is not the same as fair treatment.  At all.

Be very wary about asking disabled people to work for free.  Especially if asking that they have no employment rights, no proper ongoing structured industry-standard training from qualified experts. A day at the start of the job isn't it.  No insurance cover?  No access to a support network?  No access to counselling or spiritual direction?   Especially if there is no planning for what happens if it goes wrong....if someone sues.  Who gets sued?  The church?  The Diocese?  The disabled volunteer?  I've seen that happen.


It's not a couple of hours a week to do the job.  We're asking people to go to some 400 churches per Diocese and train hundreds of staff to legally-accountable standards.


The church is not a corporation with a lot of cash. But if we can find money for fire extinguishers and insurance without complaint, and understand that those help save people from injury, do we need to make disabled people work for free...and claim that this is their Christian duty?  


Or is it our duty to make sure that the most vulnerable, the most marginalised in our churches are not taken advantage of as a group?  Even accidentally?


It's a justice issue.  We need to think very carefully what we, as a faith group, say about the worth of especially marginalised people.

Nothing to learn about God here...move along..?

Sometimes I have an awkward conversation with church folk.
I ask to join in, saying that there are an awful lot of autistic people, and our voices count too.
For example, some 10% of LGBT+ people are autistic.  Are we represented at the Shared Conversations on CofE LGBT matters?  No-one knows.  No-one has asked, it seems.  Maybe we are, maybe we're not.  Who can tell.


And normally there's someone who says, "Why should autistic people get a special mention? If you get a place, what about me?  After all, I have diabetes, so why don't we have a special number of places for diabetic people? Or people who enjoy going to the theatre?   We can't cater for every group, as it's just ridiculous".


Is it?  It betrays an extraordinary lack of knowledge of autism.  And of God, I'd argue.


Autistic people encounter God and faith differently.  We have a different sensory system.  We see differently.  We hear differently. We are affected by texture, smell and physical contact differently.   We process words differently.  We see people differently (often being faceblind for example, and not able to recognise folk from their faces alone).  We are rule-driven, not social-relationship-driven, and that means that our reading of the Bible is different.   We socialise differently.  We form relationships differently.  Not in 'broken ways', but ways that represent something new, something amazing to learn about.  Truly amazing.


What of God is represented in what we encounter?  What of His word can we learn anew by listening to our 'take' on the Bible?
How does the word of Scripture sound to autistic lesbian ears?
How do faith images impact on eyes that see colour and texture differently?
What is it like to live with multiple disadvantages, from birth - in church life?
Is 10% of a group 'too small' to think about including?
What do we lose by not asking, by not including?


It's tempting to see autistic people as just asking to be included in order to make a point.  In order to be a nuisance.  As some annoying group asking to be 'catered for'. But it's not that.  


It's about having something so worthwhile to contribute.  It's about us hearing something really important about how we fail to see really big groups of people  (some 300,000 of us in the country who are autistic and LGBT).   It's about who has the right to decide things for us, without asking us or consulting with us.   It's about who gets to impose pain and fear on us, quite accidentally, because they failed to ask our needs too.

No, it's not like leaving out people who are keen on hockey, or those who prefer the 8am service to the 10am service.  It's about a group of people who are routinely bullied, excluded, assaulted, marginalised, forgotten and mostly live in abject poverty.  And about a church that needs to do better than, "Well, your voice doesn't matter".  If no-one has ever listened, how do we know?

Othering

It's sometimes tough stuff, trying to encourage churches to welcome all.
Some churches are fabulous.  Their leaders are enthusiastic about learning.  They enable their teams to get good training.  They fundraise and allocate budgets to ensure that everyone can get to a service and feel valued.  We know that such churches see their congregations...and finances...increase year after year.  I am fortunate to have found several like this.  But some others...well...

I want to talk about feeling valued. What it is.  What it is not.  And about the 'othering' of people like me.  Born autistic.  Autism is a sensory processing and social communication disability, nothing to do with 'bad behaviour'.

So often, disabled people or those who live with differences are tolerated.
'Tolerate' is what you do when you let someone sit next to you... whilst you feel uncomfortable and hope they sit somewhere else....but you smile at them in a false way.  The thinking behind this is, "I am such a good Christian for allowing you near me.  After all, someone like you being in my church spoils my experience of God.  You should be thankful to be allowed here".  Had that happen a few times.
Now, the strange thing is that if it was done to them, other folk would immediately see that as intolerance.  As prejudice.  As falseness.  As fear or hate.  But it's something that folk like me are often expected to be grateful for.  I think not.

Sometimes disabled folk and others who live with differences are the subject of 'awareness raising'.  This means that we get to stand up in front of everyone and explain all the things we cannot do.  All the things that make us feel really small and really bad about ourselves.   And then, people are 'inspired' by us.  "You brave person, coming to church!"  "Wow, people like you can talk!"  "So do you live in a residential home?  Is that your carer with you?"  I've had it all over the years.  We are not friends.  We are not colleagues.  We are not equal.  We are exhibits.   

Now, the strange thing is that if this was done to them,  other folk would feel really uncomfortable.  But it's something that folk like me are expected to be grateful for.  After all, we're talking about autism now, aren't we.   Yes, yes we are.  In a way that demeans and uses me, and has no regard for the after-effects. Often I'm expected to do this for free.  As if it is a special treat for me to be allowed to talk to church people about embarrassing things and then go home feeling bad. That's not brilliant. 

Yes, people like me offer training to the outside world.  Training where we knowingly do stand up in front of many others and explain our 'deficits'.  Our difficulties.  Training where we are an example to be assessed, a thing to be stared at.  And after each session, we go home to our families and friends and partners and children...and try to restore our sense of self-worth.  Important stuff, awareness-raising. But it's nothing to do with valuing us.

What does valuing us look like?  What does it feel like?  What does it sound like?
It feels like we are seen as people, as colleagues, as friends.  It feels like people want us to sit next to them.  It feels like we're offered the same chances as others to show our strengths.  It feels like we are enabled to feel safe and supported, of course - but in consensual ways that ask us.  In quiet, invisible, respectful ways.  Training like that happens in many places, and it's always a joy to work with such groups.

It doesn't look at us as a cost burden.  As a time-waste.  As a 'danger'  (frankly we are no more likely to be dangerous than you are).   It doesn't think that Church happens 'elsewhere' for us.  There are no churches for autistic people.  None.  It's like a thing where Jesus got his team to hand round food to the 5000 and left all the autistic ones hungry and thirsty.   Do you think that's what happened?  Me neither.

We are God's loved children too. Valuing us doesn't allocate the budget and team and support to everyone but us... and then claim no money, no spare time.  It doesn't involve ignoring bullying of us, or blaming us for the bullying.  It doesn't involve laughing at us or using us as some sort of freak show.  Or encouraging others not to help us.  Or encouraging others not to talk to us, by pretending we are a nuisance.  We're not exhibits or dangers.  Truly we are not.

We are your friends.  We love Jesus and are Christians who want to share our love and care with others, just like you do.  We have families, just like you do.  We have passionate interests, just like you do.  The church should not get to pretend that we are 'other'.  Not in front of God we're not.

It's our church too.  It belongs to God, and God says yes.    That's a reality that every church already has to come to terms with.  Plenty of us are willing to help.  But know the cost, please.  And value the time and exhaustion and despair that it causes, especially when so often the response is 'go away', a budget-withholding, silence-enduring, "We don't want your sort here".

You are loved.  We are not your enemy.  Learn about our gifts to the church and to God.  Value us for who we are, God's children, made in God's image.

Three Sorts of Communication Systems - Autism, Sign Language, 'Normal'.

Learn Autism: One of an occasional series for surprised passers-by.

Sometimes, I find professionals and parents who are trying to 'fix' their autistic young person's social skills.
They will tell the young person that they are...
Not making enough eye contact
Not smiling appropriately
Not asking the right social questions
Not displaying an upright and alert body posture
Not taking turns in conversation
Not using the right body language
Flapping their hands or rocking inappropriately
Not staying at social events for long enough.

And they then try to 'fix' each one of these things. Various methods are sometimes used, including persuasion, blackmail, punishment, rewards, isolation, having sensory-and-routine-need items taken away.

OK. Let's stop right there.

Let's try another example. Suppose you have a new friend who is Deaf. They use sign language, and have done since birth.

You may notice straight away that they like to face you and stare right at you a lot.
You will notice that they move their hands a huge amount.
You may notice that they may lean towards you and away from you in exaggerated ways.
You will notice that they do not talk the same as you do.
You will notice that their movements are often exaggerated, as are their face expressions.

You and they use different communication systems, yes?

So...if you went up to a Deaf person and told them they were communicating all wrong, what do you think would happen?

Back to our autism example....

You see, we communicate differently. I'm going to generalise here.  Our brains are wired to handle communication differently. We see people best out of the sides of our eyes, not straight ahead. Straight ahead is too 'loud'. Eye contact is so painful for most of us that we cannot do it, and also hear you, at the same time. It's overwhelming.
Social words are also much harder for us, so we minimise social wording and concentrate on vital accurate information.  It's 'polite' in many autistic settings for us to miss out hello and goodbye to other autistic folk...and how are you, how is your family, etc. It saves overloading our communication systems.

When we encounter many non-autistic people, they communicate all wrong.
They make painful eye contact.
Their faces make strange expressions.  Their eyebrows wiggle up and down.
They wave their own arms about and hands about, randomly.
They ask bizarre questions like, "how are you" and you're not allowed to say how you are, because the 'rule' is that you say you are OK.
They can talk for hours and hours about absolutely nothing specific at all. This would cause our brain to literally overheat and  (in a good few cases) eventually electrocute itself, which we dread.
They use language that is filled with mysteries, like 'pull your socks up'. Mine are pulled right up, thanks.
They do language all wrong, you see.  They need to be trained with proper social skills....for autism.  Or do they?  Do we?  What about our Deaf friend?

So....what we have is three different communication systems in this example.
Most people use non-autistic social word communication.
Some use sign language.
Some use autism protocols.
Some use other methods.

 They are not broken versions of one anothers' 'language'. They are different, for different people, for good reasons.

 We don't need to fix one another. We mostly need to learn to understand one another, and cherish each person's unique way of communicating and loving us.