Sunday, 15 April 2018

“You don’t know what it is like to be an Autism Carer”

I see a lot of my autistic colleagues being told this. I have been told this, often.
It comes from a deep misunderstanding of autism.

I am a parent. I am autistic. I grew up as a young carer to a desperately ill mum, without a shred of support from Church or society. What I say next is not a plea for pity, or a bid for Sainthood. It is simply a list of facts.

It was hard work to battle the systems. Get the right medical help for mum, during times when she was a danger to herself and others around her. That wasn’t evil. It was a medical situation that she could not control.  It was harder work when autistic myself, nonverbal during times of stress and overload. I learned a lot about survival. I learned a lot about love. 

 I had to organise the funerals of my parents whilst I was in my 20s.
I wonder if you can imagine what life was like? I am not alone in this history. I have good friends who are autistic and have been carers almost all their lives,

As a parent, I had to find ways to honour each autistic member of the family. Support each one to be the best they can be. Be there through good times and bad. Find a path through schools. Cope with running a business through two recessions on top of much of this.  Cope with very tough cancer treatment in 2011-12. Put up with some business and Church people making it tougher still.

I am still here.
I am still here to consider the lack of support for me as an autistic carer, and parent. Autistic parents aren’t supposed to exist, it seems. But we do. Thousands of us, caring. 
I am still here to wake up to a bunch of people telling autistic parents like me that we don’t know what it’s like to be a carer. Many good people out there of course. But some...well, where does that myth come from?

It’s simply wrong.

We know.

And, we continue to love. Continue to hope. Continue to offer our knowledge and our advice about autism. Continue to support those around us. Continue to tell people to find and hear all sorts of autistic people. Continue to campaign for equality. For justice. For the right to do the things others can do. Continue to ask for the support that all need. 

It would be great if we got support also.

We need fewer people saying, ‘...those dreadful autistic people..’ , and more saying, ‘How can we work together to bring about a good result for us all?’

Thank you for listening.

Saturday, 7 April 2018

Autism Mythbusting: Employment.


"Only 16% of autistic people are employed".  Quite often we see that said or written, in the UK.

Well, no.  

Certainly a survey of around 2000 autistic people was done by a large charity,  They found some 32% were employed, but 16% full time.  That may be the source of the "16%" myth.

"But Ann, if it's a proper survey, it's not a myth", I can imagine some saying.

Let me explain...

You see, we have to ask who answered that survey.  People involved in some way with a support charity, thus more likely to be not-coping-too-well.


We know that many autistic adults have yet to be diagnosed.
We know that many autistic adults haven't a clue that they are indeed autistic.

We know that many other autistic adults do not wish for a diagnosis, because they are afraid of prejudice.  Nor do they wish to disclose that they may be autistic, or disclose a self-identification as autistic.  In their view, they have found a niche, a way of being, that means they do not need to do so. A fair point of view.

We know that many autistic people ask for a diagnosis and are told 'no'.  Sometimes for cost reasons.  Sometimes because of those other myths... that autistic people are all male, all geeky, all youngish, fascinated with maths and science or flapping in a corner or doing card memorisation tricks.  All white.  All of the same culture. All of whom allegedly couldn't care less about others.   A host of myths.

Generalising:


We miss the ones who are not male.
We miss the ones who are extravert.

We miss the ones who are creative, kind, generous.
We miss the People of Colour.

We miss the people who are older.
We miss the myriad autistic people who are already right here, next to us, in society.  Already doing a great job (though often struggling to stay employed, as the socialising is exhausting and bewildering, and their place of employment may be sensory hell for them).
Already being honest.

Already being dedicated.
Already being a huge asset to the places in which they work.
Maybe already being the employer.  I am.  I have employed people for nearly three decades.  Some autistic. Some not.  Fantastic experience.

So, who answered that survey?

It cannot possibly be representative of all the autistic people in the UK.  Not so much the fault of the researchers.  More a reality of a system that forces autistic people to hide, because of the horrifying myths about us.

We are also guided by research from abroad:

https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-018-1645-7  A survey from a European country.  65% employed.


https://content.iospress.com/articles/work/wor2492 A survey from the US.  61% employed.

...and informal polls of autistic people done in the UK on social media.  Here's one by Shona on Twitter. 51% employed.

What this does not capture, of course, is what the non-employed autistic people are doing.

Many autistic people I know are volunteers for organisations, doing fantastic community work.

Many are at home with their children, doing a wonderful job bringing up those fine young people. 

Quite a few are in full time or part time education, studying for qualifications including higher degrees.  Some are unpaid researchers, thanks to a very odd way of funding such work.

Some are unable to work because of their health situations and other situations, including a severe lack of clue about autism by some job centres and some employers.  Good to see work happening to improve this.   Often, they are then offering peer support to others online.

Very, very few autistic people sit around being financial and social 'burdens'.  I hate that word.  I really do.  It entirely fails to capture the humanity and worth of people of all kinds.



If you go to work and are expected to be non-autistic when you walk through the door, that's not good.  

If you walk in and cannot see or hear (when the solutions to that are simple, cheap and hurt no-one else), you can't do your job.  

If you go into the office and are met with a barrage of hostility every day, because of myths and misunderstandings (or just plain bullying) you can't remain employed.  

Above, how I see an office environment under fluorescent lighting.  One example.  Not handy. Dazzling colour. Bewildering flooring. Blinding.  Exhausting. Such lighting flickers like a strobe light, too..  A change of lighting system for my bit of the office solves it, and costs almost nothing (as there's energy savings too). Or I can work from home for a lot of things.  

I work full time, running a national company.  My sensory needs are major.  It was easy to solve.  It will be easy for most others to solve, too.  The photo at the top is my office.  Parents, I was non-verbal for years, typically autistic.  Want your young person to be doing similar?  Believe it can happen.  

There's ways round the obstacles, but people have to know the obstacles are there.  Then take them seriously.  Autism buildings access is important, and in the UK, a requirement under the Equality Act, as well as being good news for your business.  It's 1 in 30 of the people around you.  (No, really).  Including your customers.
I'm going to be clear that I believe every single autistic person is a person of worth, a person deserving a good life, whether they are able to work or not.  Each of equal value to society.

In this blog, I'm focusing on the autistic people who are prevented from working, when they would like that opportunity.  Or who are stuck in menial jobs because of the lack of ways to progress.  Or who try their hardest to find work, and are prevented by that huge obstacle, the social-skills-interview.  [Are you an employer? No need to interview autistic people at all.  Just do a work experience test, properly thought through.  Help exists to enable this, if unsure.]

Instead of blaming 'the autism' for the employment situation, we need a better set of strategies. 

We need acknowledgement that our statistics are not good enough.  Mostly they terrify the heck out of parents, who think their child has almost no chance of a job.  That's simply not true.  It is true that some have profound support needs that mean they may not do paid work.  I and many others have worked hard for decades to help ensure that there is good support for such situations, for the person and for those providing the supports.  I am a parent to an autistic son.  I know what sort of a struggle the world gives parents.

We need a world where it's OK to say, "I am autistic" without the threat of someone removing your job in ever-so-subtle-ways.  And some not so subtle.
We need a world where people see the word '"autistic" and think, (for example) "Oh great - someone who is honest, dedicated, creative, hard working, can see different possibilities that we might miss.  I can ask them what they need for sensory environment.  That's doable.  I can skill my  workforce to respect their different way of communicating and socialising. There's good training for that at a fair price, from actually-autistic trainers. This is pretty easy.  My company benefits from having minds that can see the picture differently.  More profit, better products, better outcomes."

Then, we will have a situation that is better for everyone.  This isn't an act of charity.  Autistic members of staff are a brilliant thing to have, when enabled.  You probably already have some...have you asked?  Have you made it OK to disclose?

Get good training in autism. Look for training companies run by, and using, autistic trainers. Or companies run by allies who bring in paid autistic people to help, who showcase autistic work.  Then you know you have autism-positive, accurate materials, not myths.

Put up positive autism-acceptance messages about your company or charity.  Make sure we know it's OK to work with you.      

Thank you for listening. 



Saturday, 24 March 2018

Social Worker CPD Training and Autism


For a good few years now, I and other autistic professionals have been training Social Workers.  Sometimes, trainees, but more often ones who have been doing the job for a very long time.  Some, in very senior roles.

One recent session, part of a series, saw around 40 Social Workers trained.  As usual, some of senior rank amongst them.  The team covered autism training for a day, so around six hours of updating people on the latest thinking.  When we do the training, we're talking about the research, the brain scans, practical examples, exercises.  This isn't a random autistic person standing up to talk about their childhood as a sort of 'zoo exhibit'.    

At the end of it, there was a queue of Social Workers coming up to us, to say, "Thank you, that was brillliant" and "That was amongst the best training we've ever had", etc.  One in particular said, "I had no idea.  None.  I've been filling out the assessment forms for years and until this session, I did not know what I was doing.  I would have put 'not applicable' through most of it".  Another, "I wouldn't have known you were autistic.  I was so focused on autistic people in care homes  - you know with multiple disabilities or learning disabilities as well.  I didn't know how much knowledge I was missing on autism."

Recalling prior sessions, these are common comments.  

The picture at the top shows 100 dots.  Let us assume those are 100 autistic people.  Two of the dots are a different colour.  That's the proportion of how many autistic people are in care homes in the country.  The rest of us are expected to cope in society.  Whether by living collaboratively with family, or on our own.  And, to our credit, many of us find ways to do that, with the mutual support of one another.

We are 98 out of those 100, and the focus of Social Work training has most often been the other two percent.  The other two percent are important, of course, also.

This presents a considerable problem for safeguarding, in particular. If you are trained to believe that autistic people are in care homes or supported living, rocking and flapping, barely able to hold a crayon, barely able to add two and two together....and you see someone like me...well, what are you going to think?  You'll think there's nothing to consider, perhaps.  That it's a trivial thing for us to live in a society where there are predators, and where one has to negotiate with fellow humans for just about everything - from friendship to getting a tradesperson round to the house.

Let's look again at the statistics around autism.  We know that 80% of autistic people are defrauded by people they thought were friends.  We know that 30% of autistic women disclose having been raped.  The sensory situation for us is major, and the reality is that we are often blinded and deafened by the sensory world around us.  Unable to see who is a predator.  80% of autistic people are sometimes non-verbal during stressful situations, so completely unable to speak up for ourselves in words during those moments.  Perhaps unable to scream or shout for help.  

Look up the words Sensory Autism Vimeo online and watch the two minute film, with the sound turned up.  That's a reality for so many autistic people.  It's not a manipulative or nasty behaviour.  It's pain.

I get a certain number of Social Worker-trained individuals who do  not realise that the entire landscape of autism understanding has changed in the last few years.  If their knowledge is not up to date, (from actually-autistic specialists or teams where autistic people are equally valued as professionals)  they cannot possibly be in a position to offer safeguarding expertise around autism. 


I see them wading into situations where they are conversing with autistic people, and completely misunderstand the dynamic.  They assume that the autistic person is communicating 'rudely' and so go on the offensive with them.  They assume that the escalation that results means that they need to be more firm, exert more power.  They are misreading the whole situation, because of their lack of knowledge.  I see autistic people pushed into meltdown, shutdown and general not-coping by this escalation of ignorance.  Then, we find people being Sectioned, or put into increasingly expensive care settings.  Few situations were necessary.  They are caused by the ignorance of others, in many cases.

I am very thankful to be working with groups across the country, and with the best of minds in the academic and research fields.  People like me are brought in to assess academic materials for accuracy and appropriate language.  We are hired to provide expertise to Psychologists, Psychiatrists and similar professionals.  This is no longer a landscape of 'we visit autistic people in a care home and do things to them'.  This is a collaborative partnership between equals.   Am I something special?  No, I'm one of many professionals doing such work, whilst preparing for the Masters degree. Be aware that we exist, and in increasing numbers.  Make contact with such people.  

I am extremely glad of that radical change in thinking over the last years, and the resulting improvements in autistic lives.  The suicide and self-harm rates for autism are stratospheric because so few people have been trained on the communication and culture of autism, or the basic information about sensory processing for us. 

Be allies.  Find out.

Thank you for reading.

Friday, 23 March 2018

When Being Positive Becomes A Weapon


"Cheer up, love, it may never happen".

Had that experience, walking down the street?  A random stranger decides you need to be happy, even if that isn't your emotion right now?  It might have started from a place of caring about you, but ...does that work?  No, it doesn't.  They have no idea what has happened in your life already.


For many autistic people, not being heard is a constant thing in our lives.  Sometimes literally, when we are non-verbal.   Sometimes it's about not being given the chance to speak.  Sometimes it's about being deliberately silenced.

It's not just about spoken or written words, though.  Our emotions are also in constant danger of being silenced.  We are so often told to perform, to act positive, to smile, to never criticise something worrying or bad.  

The photo at the top shows someone holding up a piece of paper in front of their face.  On it, a smiley face has been drawn.  But what is their real emotion?  Are they actually sad, or angry?

One of my favourite pieces of work is on Tone Policing, at https://everydayfeminism.com/2015/12/tone-policing-and-privilege/  With a warning for some strong language and content, which are used as part of the example.  In it, it shows all sorts of things that people get told.  That they should be nicer.  That people won't help them because they are sad, or upset.  That they won't get help unless they are happy enough.  And, a reality, that often it's about someone else who wants to be happy and expects us to be their personal answer to that, at our cost.

So many of us have had a lifetime of being told to be happy.  Having to put a false smile on our faces in order to please others.

Being positive sounds like a great thing, doesn't it.  And, when it's genuine, of course it is.  Finding joy in life is a journey for us all, and learning to look after ourselves is a vital skill.

But some people from some organisations use positivity as a weapon.

"Person A isn't a positive person.  Let's ignore them and leave them out, instead of listening to their concerns".
"If you raise any concerns about my rude or selfish behaviour, you're just not being positive.  It is you who is the problem."

 "If my alliance with an anti-autistic organisation is causing you difficulties, you just need a better attitude.  If we're all positive together, good things will happen".


There's lots of reasons to be positive as we go through life, when genuinely good things happen.  And, of course, some people use negativity as a weapon, deliberately undermining others with it, so being falsely negative is also not good.

But, goodness me, we need to say to autistic people, "It is OK to be sad" and "It is OK to express concern" and "It is OK to be angry with this situation and want it to change".  Especially when we have a population who are so regularly silenced.

If we are serious about the mental and emotional health of autistic individuals, let's not silence their true voices, or their true emotions.  Let's listen, and start from where they are.

Thank you for listening. 

Wednesday, 21 March 2018

Safeguarding and Church - An Informal Guide

 
Are you in a church or church group, and responsible for the safeguarding of children, or adults who may be vulnerable?  This is an informal guide, not authorised safeguarding material.  It is here to help you think, and plan.  I am a national adviser on this subject and have been for a very long time now.  I'm also autistic.

Are you aware that 1 in 30 of the children, young people and adults are autistic?

Are you aware that autism is a brain design, from birth, that stays with people for life?

Are you aware that it's not a mental health condition? (Although after a lifetime of experiencing loneliness and hatred, many develop anxiety or depression).   That it's as likely to be females, for example?  That it's any IQ, any background?  That it is usually an invisible thing, so you cannot spot an autistic person by just looking?

Generalising:


Are you aware that it is a different communication system and culture to that of non-autistic people?

Autistic people may not give eye contact.  They can either hear, or look, but not both.   It is not a sign of guilt or unwillingness to engage.

Some autistic people find it difficult to identify faces, but can be expert at identifying people from mannerisms, build, smell, voice, hairstyle, clothing, etc.

Are you aware that most autistic people process sound, light, perfume, texture and taste differently to others?  They may take in too much sensory information and become totally overwhelmed.  When that happens, they may have a brain event, similar in principle to a sort of epilepsy.  During that, they may behave erratically for a short time, or may 'shut down'  Recovery somewhere quiet is needed for a while.  It's not a deliberate piece of nastiness or refusal to engage.  They may need an environment that is away from flickering overhead bright lighting and background noise, or otherwise may not be able to speak to give evidence.

Are you aware that there is no link to greater violence, nastiness or other antisocial behaviour, and that there is usually a huge desire to act in moral and fair ways?  Many have strengths of honesty, integrity, diligence, passionate focus on specialist areas, deep caring for others.  Whether verbal or not.

Let's look briefly at the communication difficulties that an autistic young person may have in disclosing to a person in church:


a) Some may not use spoken language, but may rely on technology to 'speak' for them.  Do we enable this?  Do we understand that 8 out of 10 autistic people may struggle to speak in stressful situations, so may need allowances for this.


b) They may have delayed processing of emotions and facts.  So, may not report for some time.  This can be misinterpreted as 'not very serious' or 'not to be taken seriously'.     It's vital to give people enough time to process what has happened.

c) Their faces may not display the matching emotion to that felt, so someone may appear happy when they are desperately afraid, or may appear angry when they are desperately sad.  It is vital not to misinterpret this.

d) Autistic people need certainty, and will ask questions until they obtain certainty.  If you're not certain of a set of answers, say so.  If a timescale is vague, give an outline of that vagueness, e.g. "I do not know but I will check with person X...and contact you again by date Y to let you know the latest, if anything".  Not, "I don't know.  I'll let you know when I find out.".  Having some certainty of further contact may be vital.

e) Autistic people will be persistent.  This is culturally expected in the autistic communities and is not an attempt at being harassing.

f) Autistic people will tend to give too much information, in enormous detail, possibly as one monologue that has to be completed.  This is culturally expected in the autistic communities also, and is not a sign of 'not caring about the workload of the clergy' etc.

g) 70% of autistic women report unwanted sexual contact.  30% report rape.  We know from the recent Inquiry into the CofE safeguarding situation that churches have not been safe places.  There will be more cases where autistic individuals have been targets.

I want us to reflect on those statistics.  The pain involved.  The humiliation.  The fear.  So few go forward to Court, because the barriers are too great.


h) 30% of autistic people are part of the LGBTQ communities, and may be terrified of disclosing that also, in some churches.  If they have been targeted, there may thus be double barriers to justice.

Some autistic people may not understand what is normal in a relationship, and may be very na├»ve about it.  This can make them ideal 'prey' for a predator, telling them that 'this is normal', or 'this means I care about you' or 'God wanted me to do this'.


Autistic people may be terrified of disclosing, or giving evidence, because they have so often not been believed. "You must have imagined it...you must have misunderstood...you must have been having a bad day and it just seemed bad...they're such a nice person and obviously they wouldn't do that to you...".  That, and the myths about how autistic people are 'dangerous' have been a huge barrier.  It has been so easy for any predator to say, "We all know that autistic people are nasty.  They just want to hurt me.  I'm the victim here."

If we do not have a system that understands autism, we are failing the 2 million autistic people in the country.  We are failing them when they edge towards faith communities.  They are as likely to want to be members of a worshipping community as anyone else.

Who in your church knows about autism?
Who are you getting your information from?

Are you getting information directly from the autistic professionals, who are experienced in teaching churches how to ensure safety?
Or are you getting it from a group of people who met an autistic person once and did a day's course in it? [From a recent example...]

Who is delivering your training?  Is it done with autistic people, and is it designed by autistic people?  What input did autistic people have?  Have they checked it and said it is accurate?

I've seen a lot of dreadful 'training' happening in churches, from people who have ended up describing us in appalling ways that have made it harder to disclose, not easier.

Please, get some good advice.

The link at the bottom is a good starting point.  The Welcoming guidelines for the Church of England.  Although of course autistic people are already in churches, some of them as Clergy, musicians, bellringers, craftspeople, artists, poets, authors, prayer partners, Server, Readers...in fact all the roles.  The guide is one I wrote for the Church of England.  I don't work for the CofE now, but still help friends in there as an external adviser.  Inclusive Church have some contacts for autism as well.  Ask for Autism Oxford to do some training, perhaps, or any other good group that includes and respects autistic voices.

Too many autistic people have to live with what happened to them.  They need to know who to talk to, or who to write to, in safety.  Do they know?

They're relying on your help.




https://www.oxford.anglican.org/wp-content/uploads/2013/01/autism_guidelines.pdf


The picture at the top is one I took in a church.  It shows Mary, the mother of Jesus, with the baby Jesus in her arms.  She is sitting down, looking at him with love.  A shaft of light is falling on him.

For me, it says everything about the care we need to give to one another, all part of God's creation.








Sunday, 18 March 2018

Go Gently


Cold snow, caught in bitter winds.  Twilight, with no shelter from Spring's leaves.

So many...

A countless number whose lives are no longer...
whose graves are unmarked
whose cries for help went unheard

Go gently
For those cries for help may sound like anger, like bitterness, like scorn, in a world unaccustomed to the voices of the autistic people brought to their knees in desperation.

Go gently
When you respond with anger, with mockery, with a sense that this is a battle to be won, a test of your power and superiority.

Go gently
For those words you speak may be the last they hear.

Echoing across the cold snow, caught in bitter winds.



In memory of all of the autistic people who have taken their own lives.
Nine times the suicide rate of non-autistic people.



If you or anyone you know is feeling like you cannot go on, please contact a service who can listen and support you.  These are listed here:

https://www.nhs.uk/conditions/suicide/ in the UK
https://suicidepreventionlifeline.org/ in the USA


Saturday, 10 March 2018

...And the audience said 'No'. A pivotal moment in autistic history.



A major autism conference was held in the UK recently.  It was filled with professionals.  Various speakers were invited to the stage, and gave a variety of useful and informative talks.

Then, another speaker arrived on stage.  An eminent professional.  Very well connected.  They gave a speech which portrayed autism and parents of autistic children in various negative ways.

There was a stunned silence from the professional audience.  

One of the professionals in the audience asked for the roving microphone, and said what a lot of the others were thinking - that this was totally not OK.  Their interruption received applause and cheering.

The speaker left the stage, unapplauded.

The autistic communities had quite enough of being told all sorts of nonsense about autism a long time back.


But now, a huge and growing number of the non-autistic professionals are agreeing that it's not OK.  The non-autistic professionals are saying 'no' to theories that humiliate autistic people and their families.  They are wanting to listen.  They are wanting to learn directly from autistic people of all kinds and of all backgrounds.  They are seeing us as allies, rather than zoo exhibits or examples of broken things that need fixing.

It was a pivotal moment.  A moment where it became OK for such professionals to say a public, 'NO!' to their colleagues who want to speak about us and our families in ways that 'other',  humiliate, blame or shame.


The conference organisers put up an apology for the person's speech.  They said it did not represent their views.  

Think carefully about who you invite on a stage to talk about autism.  Not everyone with a list of qualification as long as your arm is a suitable person to stand up and speak.

Ask good autistic speakers, autistic professionals.  Organise the events with autistic 'voices' present, with equal power to the non-autistic ones.  Make sure you pay autistic people the same as you pay the non-autistic ones.   Ensure that the non-autistic speakers are allies.

And rejoice with us that the audience said, "No!"




The picture shows a hand holding a white sign, with the word NO! written on it in red.