Monday 28 May 2018

"If you've met one person with autism, you've met one person with autism"? Read on...

Turning the pages of a book, I read the words of an autism researcher.  What's the point of the word 'autism', they asked, if every autistic person is different?  They referred to the phrase, "If you've met one person with autism, you've met one person with autism.".  It's a well known phrase, although using language that is long out of favour in the autistic communities.

There seems to be a misunderstanding.

All people are individuals.
People who are wheelchair users are individuals.
People who are Blind are individuals.
People who are Deaf are individuals.
People who are all 5ft 6 are individuals.

Being an individual does not mean you are suddenly able to see.  Being an individual does not mean you are suddenly able to hear.  Being an individual does not mean that you have stopped being autistic.  Being an individual does not stop lots of people from being 5 ft 6.

What do we mean, when we say that all autistic people are individuals?  Does it mean that our needs and differences are so diverse that there's no such thing as 'autism'?  I do not believe so, no. 

Autistic people have sensory processing differences that are markedly different from those of others. I've yet to find one who doesn't, though some are blissfully unaware of those sensory differences as yet.  Which senses, and in what way...that's the difference.

Autistic people have a need for forward planning and good routine, to avoid sensory and social overload.  Much much more so than an average non-autistic person.  The differences are around what helps with that, and how much variation can be tolerated from day to day.  

Autistic people have difficulties interpreting the body language and face expressions, eye contact and voice expression of non-autistic people, and vice-versa.  What's different is the degree of it.

Autistic people need life to be logical, fair, honest.  Far more, on average, than the average non-autistic person.   Our outrage when people break rules, tell lies for personal gain, can be far, far more outraged than a typical non-autistic person.  The differences are in what the person finds particular outrageous.

Each autistic person also has their own personality.  Some quiet, some not.   Each is their own age, from their own background, their own accent, their own educational level and set of IQ and ability scores.  Their own gender and sexuality identities. Their own faith, or not.  Their own ethnicity.  These and many other individual things.  Those are not different 'autisms'.

For a long time, we had standardised autism to an extraordinary degree.  We seemingly believed that all autistic people were clones of 'geeky boy', Rain Man, or Temple Grandin.  It seems to have been a huge shock to a number of professionals and researchers that we are a varied bunch. But a varied bunch who are all autistic.

Simple, really.

Sunday 27 May 2018

That group includes autistic people?

I am grateful to an online colleague for mentioning this diagram.  It shows different levels of attitudes to a group.  How much that group of people is really included, really empowered, really respected and trusted.

These are some possible thoughts about it all, just to help others to start with the thinking.

At the bottom of the 'ladder', manipulation.  Where the people with power decide that autistic people must simply be lied to, to get us to do things that they want.  Or, lied about, to get others to ignore, exclude or fear us.  We're actively distrusted.

Next up, just therapy.  Not any actual consent or sharing. Not good therapy. The sort of therapy where the people with power decide we are broken, and need fixing.  So they make us do therapy whether we consent or not, whether it is good for us or not.  No matter how much we express pain, fear or exhaustion.

Next, just informing autistic people.  We are not part of the decisions.  The people with power make the decisions, then tell us what those are.  This is not sharing, or respect, or inclusion.

Next, just consulting us in problematic ways.  (Not good consultations with trusted partners.)  We do not decide what we're being consulted on. We're not the people who make the final decisions.  We are invited to a room and asked questions and the data is collected.  Then we are sent on our way.  The report is not written with us. We are not put in front of the powerful decision makers.  Quite often, the 'consultation' reports are shredded and the powerful people do what they like anyway.  But they can tick a box saying they 'consulted'.

Next, placation.  When autistic people raise concerns about something, someone says sorry.  Someone promises it will change.  An actual start to someone stepping away from their position of power to say something with some humility. it?  Or do they do the exact same thing again, having said sorry?  If so, that was manipulation, not placation.

Now we're into the bits where autistic people are starting to be respected.  Partnership.  We work with organisations, as part of their team.  Not a powerful part, not a part with the final responsibility, but a part.  A volunteer on the team, named and visible, perhaps.  Maybe even paid a small amount (not as much as other people who aren't autistic, normally).  Enabled in a supportive way, with leaders speaking firmly about respectful behaviour around us.

Then, the next level - delegated power.  We are given Actual Responsibilities.  Not top power, but we're allowed to decide on things, given proper status alongside other junior managers or leaders.  Paid properly.  Enabled properly.  Respected.  Not put into situations where others are allowed to undermine us, and then those with real power say, "Well that just goes to show we shouldn't have any more autistic people working with us, eh?".  That's not delegated power.  That's manipulation.

Then, the top level, proper management power, proper leadership roles.  Fully paid or responsible, fully empowered, fully able to hire, fire, make really huge decisions with others.  Fully trusted, fully enabled, fully respected.

Where, on this list, is the group or organisation you're thinking about?
Where is a person you deal with, on this list?

Where are you, on this list, when you encounter an autistic person?

It's a good list to think about, I find.

Friday 18 May 2018

Driving Whilst Autistic

I have had some interesting conversations around autism and driving, this week.  It led me to look at some research into this.  It is fair to say that I was, er, surprised by my findings.

Firstly, almost without exception, the 'test subjects' in the research were young men of between 16 and 25.  

Almost no female or other genders.  Thus cutting out almost half of the autistic population from the research.

Almost no adults in their late 20s, or indeed their 30s, 40s, 50s, 60s, 70s or older.  In other words, during all the years when people normally drive, or may learn to drive when older.

Some of the researchers decided it was too much bother to ask the actual autistic young adult drivers, so they asked their parents to fill out the questions instead, I kid you not. 

Other researchers decided that it was a really good plan to test autistic people by putting them in front of three huge flickering screens in a mock-up of a driving position, and do a computerised simulation.  This would be the same as their actual driving skills in natural light on a real road, in a real car, they mused, not knowing anything about autism it seems.

Yet more researchers decided that autistic people were 'bad' because they paid equal attention to objects and people in these computer simulations.  Whereas the 'correct' response was to pay attention to people more than objects, when driving.  Apparently they failed to ask the autistic people why they paid attention in such a way.  After all, if you can just portray us as 'bad', job done?  I might point out that a computer simulation of a person is not the same as a real person, for example.

And some of the researchers seemingly ignored recent studies showing that, on the road, in a real car, autistic people were as good or better than the non-autistic ones.  More careful, better understanding of rules, etc.

Talking with autistic drivers who have driven for decades safely and without problems, several have told me that one of the biggest obstacles in learning to drive was the appallingly bad non-autistic instructors.  They simply wouldn't explain things in a clear way, and assumed that the autistic person could interpret and 'fill in the gaps'.  Then, if the autistic person got it wrong, "Well, it's their autism, innit".

Is it?

Like every other sort of person, some autistic people can't drive.  Some autistic people attempt to pass a test and don't.  A few autistic people are not good drivers.  Some autistic people are average drivers.  Some autistic people are excellent drivers.

Just like everyone else, if given the same chance to learn the skills, in fact.

Each autistic driver has to pass a competence test.  It's called the Driving Test.  Same as everyone else.   

Turning to the DVLA, the organisation in the UK who handle driving licenses for people, their website (paraphrased) says "if" someone's autism means they shouldn't drive because it's not safe, then, er, they shouldn't drive.  A strange statement, whichever way we look at it.  

One doesn't become autistic after passing a test.  One is born autistic, and is autistic for life.  So someone who is deemed competent by an examiner is indeed as competent to drive as everyone else who passes their test.    In fact, many autistic drivers show great strengths such as diligence, honesty, carefulness, fairness and accuracy, as well as often having a really good knowledge of cars/maps/road signs etc.  I've had the honour of driving with so many fantastic, very safe autistic drivers, including those within our own family, and observing their skills over decades.  Researchers should try that instead of getting out a computer.

I'd quite like our researchers to do some quality research into autism and driving, because this is important stuff.  Autistic people are rarely able to access public transport in any good way, and for many, the car is freedom, opportunity, a social life, and (vitally) a way to get to work and back.  What we need is really good research that looks at the whole range of autistic people, not just 5% of us.  Research that looks at fair testing of skills, looks at how we can improve the process, ensures that we have more instructors with autism knowledge, and produces better ways to enable people to learn accurate, safe skills.

Analysing a group of teenage lads playing on a computer does not in any way represent a driving research project worthy of the name.    

The picture at the top is a green open top racing car, parked in a warehouse.  

Monday 7 May 2018

Dear Church. You know I love you. But we need to talk.

Dear beloved church of mine. 

You know I have spent 20 years serving you? As an adviser who has co-written Policy for the Archbishops’ teams? As the main lead on autism for a decade? As a speaker, trainer, prayer partner, friend?

You see, I’m autistic. And, well, there’s no easy way to say this. Your words can hurt. They wound. They injure. They humiliate. They dehumanise.

I know. I know you don’t mean to do these things. I know you want us all to thrive. But, well, let me explain.

Yesterday, I opened a new book by a senior church figure. Being Human. Published this year by SPCK, a charity whom I have supported for a time and who do fabulous work with me.  The book is written by a fine mind, a person well known for their kindness.

Yet..well, walk with me through this extract...

“I find some of the most suggestive, creative and challenging insights come from looking at how people work with those living with autistic conditions..or dementia..It’s when we see malfunction or challenge of this nature that we begin to see also what we take for granted...what we mean by consciousness...”

Turning to the blog of another senior figure, we read him quoting from a text, “..The autistic or Down’s Syndrome child, the derelict, the wretched or broken man or woman, the homeless, the diseased or mentally be able to see in them not only something of worth, but indeed something potentially godlike, to be cherished and adored, is the rarest and most enobling unrealistic capacity ever bred in human souls.”

So, malfunction...or an act of unrealistic nobility to see that of God in me.

Well, my loved friends, that hurts.

You may not mean it to.   

But I want you to walk with me.  The me that is a human like you.  With feelings like you. Loved by God like you. Cherished by him like you. Bringing our whole selves to his service, like you.  As leaders, as prayer partners, as friends, as people of honour and integrity. You see, it's endless, the list of negative things we wade through in life. Just endless. Example after example in theological writings, from these fine authors and others, using me and my lived friends and family of all autistic kinds as the examples of the monster, the tragedy.

  When you write of us, could you try to write as you would write of a friend? Could you write of us as a fellow disciple?  Might your words reflect the knowledge that autism never was a lack of humanity, but a misunderstanding of communication and sensory differences? Autistic people are generally kind, caring, courageous, a blessing. But so often placed in great pain and distress through ignorance of our differences. 

Could you perhaps avoid comparing us to inhumanness and brokenness to see how close we match up? It hurts. I am sure it hurts all the others in those awful lists too.

Autistic people yearn to read that we are welcome at that table alongside our loved friends, in all the love and sharing that our faith brings. 

Thank you for reading.