Saturday, 28 January 2017

Sexuality and Religion - Thoughts after the Church of England Paper

Autistic LGBT people.
Some 600,000 of them in the UK.  (On the latest figures of 2 million autistic people, a third of whom self-identify as lesbian, gay, bisexual, transgender, asexual, neuroqueer or otherwise).

As we know, autism is not a mental health condition, nor a learning disability.  Nor is it anything to do with violence and 'bad behaviour'.  Those were old myths, long since debunked.

Autism is a neurodiversity, as confirmed in medical journals such as The Lancet, recently. Part of natural human diversity of brain design, with strengths as well as challenges. Generalising from that research...more moral, more honest, more fair, a great love of learning, creativity, passionate focus on topics, expertise.  So many of our top specialists in society are autistic.  Half of autistic people are female.  You didn't know this?  You had been told myths?  Yes, many were.

It is a brain design built for accuracy, fact-checking, fast detecting of tiny changes and incorrect information.  Our senses are often super-wired to detect the very first hint of smoke, the first taste of food that is going off, the first sound of approaching danger.  In older societies, we would have been of immense value.

Since the false medicalisation of all autistic people in the last couple of decades, our uses have mostly been forgotten.  So many people have been bamboozled (I love that word...) into thinking that all of the two million autistic people in the country are just like a 'badly behaved young boy'.

We're not.  We never were all like that.  I'd argue hardly any are, from my 20+ years as a professional in this work.  Most are lovely, reflective, kind, empathetic, dedicated. 

Many autistic people became marginalised, forgotten, ignored, pitied, hated.  Only 16% managed to get a job, thanks to the myths.  Most die some 16 years earlier than others, because of the appalling misunderstandings and lack of training of the health profession.  Many of us are working very hard to improve things.  

Most, thanks to those myths, have few, if any, friends, so a marriage or loving faithful Civil Partnership becomes all the more precious, all the more our way of showing our love for a cherished other.

A third are part of the LGBT+ community, on the figures we see.  
We're as likely as anyone else to be people of faith, whether that is Christian, Jewish, Muslim or anything else.

 We know from brain scans that, generally, autistic brains are often not of specific male/female design.  The design is different. We've not even begun to explore what God is doing here.

There are a variety of Christian views on what God thinks of LGBT+ people.  Some for example read the Bible very literally, and believe that God condemns all gay relationships.  Others, equally Christian, equally prayerful, take a different theological view.  They believe that God never condemned loving, faithful permanent relationships between gay couples.  Both groups of thinkers love God, believe that the Bible is a foundation of our faith, pray, go to Church, and listen to great leaders on this topic.  It is not a question of one group being deliberately sinful, or wilfully ignoring God. It is not a question of LGBT people leading anyone astray into sin, wilfully.

The Church of England published a paper for its 'Parliament', General Synod.  "Marriage and Same Sex Relationships in the Shared Conversations - A Report from the House of Bishops".  It's quite long.  It's on their website.  You can Google it [Other search engines are available].

We know that loving gay couples do a fantastic job for God and society.  I am blessed with knowing so many wonderful couples.  Honest, caring, dedicated, loving Christians and people of all faiths and none.  Each serving society in the same ways as other couples.  For a time, we were told this was a terrible 'gay agenda', working to destroy other marriage and society.  Some in the LGBT community responded with humour, such as this placard.  Others, with astonishment or despair.  

The CofE has been telling LGBT people that there would be a few years of sharing our stories.  Hotels were booked.  People who are anti-LGBT and people who are LGBT were invited, along with others.  For a couple of days, each person shared their stories.  Things will get better, they were told.  'This is all good.  This a shared journey. We're learning about one another'. Paraphrased. Lots of hope, lots of promise.  LGBT people encouraged to share deeply personal detail.  Detail that could be used against them by anyone unscrupulous, arguably.

Autistic people weren't invited to those.  We weren't deemed suitable.  That's curious.  I'm always interested in the places we're left out of.

The paper?  Nothing changed.    It had still banned its Clergy (Priests, Vicars etc) from marrying someone of the same sex as them.  If they do, they could lose their jobs and homes.  That won't change.  It had ensured that Clergy couldn't marry gay/lesbian couples in church.  That won't change.   It had ensured that Clergy could bless toilets, goldfish and nuclear weapons (no, really), but not gay marriages.  That won't change. Anything important hasn't changed.  Not a prayer, not a service, nothing.

In the report, it says the church should (for example) 'affirm what is good about friendships' instead.  

OK, straight people.  If someone wandered up to you, when you were deeply in love with your marvellous now-husband or wife, and said, "Hey, you could just be friends! God would like you to just be friends and not marry!  If you marry, you are trying to destroy everyone else's marriage", what expression would be on your face right then?  Did you marry in order to destroy society and have an evil agenda?  No?  Quite.  You probably married for the same reason as most other people - because you were deeply in love, wanted to honour society, family, friends, wanted to be part of that covenant of love before God, so you can bring up a family, etc. So do gay people.  They marry for those exact same reasons.   Even if the blessing of marriage seems like a distant prospect, the LGBT community were hoping for something.  Some sign that they had been listened to.  Some sign that horrible language like 'same sex attracted' was utterly inappropriate, an insult.

The document mentions that faithful loving gay relationships are often a wonderful thing.
And then, on page 18, the reality....that our documents say that if Clergy marry someone of the same sex as themselves, they are being a 'bad example to the flock of Christ'.  

Well,  autistic LGBT+ Christians never got a say in any of this.
This precious group just get stuff imposed.  Voices unheard. Stories unexplored.
I don't think that's OK.
I think autistic LGBT+ Christians deserved to be heard.  Deserved to be considered.
Deserve to be included.

I am sorry that my lesbian and gay clergy-friends have had this experience with the church. I am sorry that you are seen as a 'bad example'.

I see you as a joy.  As bringing to society God's love, faithfulness, caring, sharing, honouring.  As disciples, as leaders.  I see the same in non-LGBT clergy-friends also.

I continue to pray for a world where people stop hating. Stop fearing.  Stop excluding. Stop making us stories about motives, in order to keep people fearful of us.

Autistic people have already lived in a world full of hate and fear, exclusion and ostracism.

The very last thing this group needs is more.  
The very last thing that this most vulnerable of autistic LGBT Christians needs is more.

I have stood over the grave of too many dead autistic people, who had ended their lives because they simply couldn't go on.

Not in my name.  Have mercy.


Monday, 2 January 2017

Autism and Disability - Charities pretending to enable us

Nearly everyone loves a story that makes them feel good, yes?  The pictures of a noble carer, selflessly devoting their life to caring for 'people like that'. 

I'm a carer.  And I'm disabled.  I've been a carer since age 10.  It's never, ever been about me needing to be honoured or rewarded for that,.  Caring isn't about me 'doing things' to someone else.  It's a relationship of love and respect, in which both people learn from one another.  It's really hard work, for sure.  With little support, little funding, little training or information.  But it's a partnership, always, between me and the other person.

Any idea how it feels to be thought of, or pictured, as just an object of care by some superhero?  Not good, my friends.  Not good at all.  It is disabling, disempowering, humiliating.  Trust me, even the most uncommunicative person knows when they are being treated with disrespect.

When I'm looking for a disability charity to support, with training, with skills, or with finances, I look beyond the 'feelgood' stuff.  The glitz, glamour, awards, presentations.

I ask three questions.

1) Who is leading this group?  Can I see leaders who are disabled, rather than token people put in front of a camera?  Or is it a group of people 'doing good to those poor disabled people'?  Beware of groups of Trustees with no biography information, no clue why they are in this role.  I like groups to be open and honest about their leadership and motives, with clear ways to get in contact with senior people.  And senior people who respond, politely, openly and honestly, to questions from disabled individuals.  I'm always fascinated by the ones who claim to want to change our lives, but won't speak to us.  Why would that be, eh?

2) Who is speaking for this group?  In the media article, is the article about the disabled person and using their own words, pictures, actions, etc?  Or it is about the heroism of someone who cares for that person?  Whose story is it really?  Does the disabled person just get to be a prop, so we learn about the heroic actions of someone else? Or a prop in the story of the carer?  That's nothing to do with respecting disabled people.  Watch out for narcissistic non-disabled leaders who want to be the story, and want everyone to watch them being marvellous.  That's not what it is about.  Watch out for their token disabled person who is allowed into a space, in order to sit there and smile, or read out the leader's choice of words.   That's not leadership or power, and it's not respect.

3) Is the message about enabling the individual to have their own voice, their own way of communicating?  Do the disabled people decide for themselves what they would like in their future?  Or is it about a group deciding what they will do to disabled people?  Who gets to decide?  Why do they get to decide that?    Who got to decide that 'outcome A' was the outcome required and desired?  Why?  Is that the only option?  Ask.  Really ask.  Whilst you're asking, ask how many disabled people are on the staff.  Ask how many are paid, and at what level.  "We have 4% disabled staff" sounds fantastic, apparently.  Except 16% of the population is disabled, and often people mean, "...well, they're like staff, but we don't pay them. They're more like volunteers really.  Oh, there's Mary, she's paid £5 a week to clean the toilet. And Jas, he's paid £5 to clean the cars.  If we put those down as 'disabled staff' it makes our fundraising report look really good."   That's not what we mean by staff.  Ask what they mean by the term.

Any good group will want to make sure that disabled people have an equal voice, an equal chance at leadership. With proper support and training to enable that to happen, not just landing them in a situation without support, and watching them fail.  "See, the poor dears can't do it".  Been there.  It wasn't pleasant. That's how some groups undermine disabled people.  Not clever. 

A good charity or group will want to ensure that disabled people have the ability to decide their own life choices.  To decide for themselves if they want a 'cure' or not.  To decide for themselves whether their actions are wise, or not (as much as is practical of course). To choose their own right response to an unfair or painful situation, and not have that described as a 'challenging behaviour'.

Who has control of the money?  Who has control of the media?  Who gets to decide who is hired, and who isn't?  Look for how many disabled people in that group have the ability to make those decisions.

"Oh but they're disabled.  They can't do that.  They can't even speak".

This is 2017.  There is technology.  We can all 'speak'.  Some speak in words.  Some speak in music, in arts, in movement, in emotion.  We all speak, in our different ways.

We need groups who listen.

Ask.  Explore.  You'll see a lot of things you didn't want to see.  But there's some good ones out there.  Find them, and enable them to thrive.

Thursday, 22 December 2016

Autism, and why I'm a Christian - a Reflection for Church Leaders

As the season of Christmas is upon us, a personal reflection from me on faith.
Why?  Because it's a huge part of my life.  Always has been.
I knew God was there, even before I knew that people were people.  Even before I knew how to use words. 
And, for me, the Christian faith has been the thing that has kept me going in dark times.
We know from research that autistic people are just as likely to be part of faith as anyone else.  Whether it's Christianity, the Jewish faith, Muslim, Hindu, Sikh, Buddhist or otherwise. 
It's hard to explain what a faith relationship with Jesus means to me.  It means that none of these scenarios happened:

When Jesus met with social outcasts, he didn't hurry by, saying, "I don't have any time to deal with you".
When Jesus was approached by Nicodemus, arguably autistic, he didn't tell him to go away because it was too much bother or cost to deal with him.  He explained things, and created the most loyal and faithful friend, right to the end.
When Jesus found Mary Magdalene in his life, he didn't say, "Gee, a woman with money and an unusual past?  Let's distrust her."  He used her gifts, and made her part of the life of that band of followers.
When Jesus encountered disabled people, he didn't say, "Well, it's your own fault.  What do you think I am, social services?"  or "Do you mind not being here - we have real work to do and you're in the way of it".   He loved, he ask them what they wanted for themselves, he healed their lives in ways that respected those wishes, he brought them back into relationship and community.  It was never, ever about walking by, pretending it was all too problematic, pretending that 'people like that' are too much bother or not the right sort.

Jesus said that we were to be included.  Brought into the banquet.  Actively sought.  A full banquet.  Not a crumb from the leftovers, not an afterthought.  Not in a different room, somewhere else.

Even as I'm writing this, I'm in tears of relief, just thinking about that degree of love.  Because it's not something we get a lot of.  Yes, there are lovely exceptions...but....
We mostly get to be the 'cost', the 'issue', the 'problem', in modern church, I'm afraid.  Well, we do, don't we.   The person leaders hurry past, , so they are not inconvenienced by having to meet us, having to encounter us, having to speak with us.

I yearn for the day when perhaps, just perhaps, I get to meet our Lord, and fall at his feet, knowing that I'm loved.

May the love of God, and of Jesus, be amongst us all this Christmas.

Saturday, 10 December 2016

Autism: Accessing a Secure Building.

This is a security checkpoint.
Well, this is how my brain processes a security checkpoint, under intense fluorescent lighting.  Others will process the scene differently.  Autism has variations.
For me...

I have no idea.  Just none. 
What's on the floor?  A hole?  A carpet pattern?
Who is there?  Who is speaking to me, and what am I supposed to do?

Where am I going to put things?
People start getting firm with me, if I hesitate, or fail to make eye contact.  But who with?....something that's it a person?  In the glare and shapes, it's hard to tell.
Instructions...but I'm barely able to take them in. The fluorescent light is like a strobe light.  Whirring machinery.  Noise all around me.  Whining from the scanners.
Frisking - so painful, like being given an electric shock.

My things being taken away from me to...somewhere....
Ordered to move quickly...but I can't.  "No, you can't wait for a friend to guide you", because that would make me an obstacle, a hazard, a, in panic, I have to walk into what looks like a hole in the ground.
Tears fill my eyes, and I've become non-verbal.  My brain has taken in so much new information, in such a high stress environment, that it has shut off my ability to speak.

I specialise in explaining autism to security teams, and getting them to understand that resistance, non-compliance, running away....those aren't signs of guilt.  Those are signs of fear, bewilderment, sensory 'blindness', communication shutdown, or autism meltdown caused by all of this.

Unfortunately, to be able to explain any of this, I have to endure all of this.  In each new setting.

It takes its toll.

It's easy to think that autistic people are 'just making a fuss'.  That we are just lacking courage, just looking for attention, just being rude. That's because your sensory system is designed to handle these places.  Ours, frequently, is not.

People have no idea, at all.  Just none.

If you are staffing a security checkpoint, know your autism protocols.
If someone identifies themselves as autistic, think, "minimise light and noise"..
Read instructions on any autism alert card.  Or ask the person what will help.
No eye contact.  Quiet, clear instruction, repeated if necessary.   Time to process the instruction.  Calm, reassuring.   Move to an area outside of intense light if you can.  Explain each thing, clearly.
Allow us time to see and hear, and to move very carefully.
Do not waste your time trying to read body language or eye contact, or indeed misinterpret the wearing of layers of clothing, sunglasses or baseball cap, etc.  Those are sensory-dimming techniques and needed to avoid difficulties with lighting etc.  Similarly with headphones to cut out noise.

Stay calm if there is erratic movement, panic or shouting; this is a meltdown, not a threat display.  Or, repeated movement may be a 'stim', a way for the person to calculate distances to objects, or a way to keep calm.
Guide the person quietly to an area where they can let their brain cool.  Quite literally.  It's got too hot inside the skull and it needs to gradually cool back to operating temperature.
Same with someone who cannot speak; that's a shutdown.  Also needs time for the brain to cool itself again.  It can take an hour and a half to reach 'cool', if allowed to.
After a meltdown or shutdown, the person may be utterly exhausted, unable to focus, unable to communicate well for some time.  They may not be able to look after themselves or get themselves home safely.   Find out if there is someone who can come to be with them, or find a way to get them (for example) a taxi home.
A blanket to wrap ourselves in can help.

If we say we cannot do X, we really mean we cannot do X.  It's not a game, and it's not a way to get something for ourselves.  

Be aware of autism, and respectful of those who attempt to access the same things as others....but have to endure things that are ordinary for others, but horrific sensory and social experiences for many of us.

Security is vital.  But no-one is made more secure by mistaking autism, a brain design difference, for a threat or a danger.

Saturday, 19 November 2016

Autism: 1 in 30. Missing Most Females.

Autism.  1 in 30.

Yes, in the UK, we are still using an 'official' statistic of 1 in 100.   It's out of date.

Normally at this stage, various of my professional colleagues will roll their eyes and start muttering about 'reliable data'.  I'm very much in favour of reliable data.  If only we had some.

Instead, let's have a look at some data from the USA.  Recently, researchers asked thousands of parents if a Doctor had ever said that their child is autistic.  1 in 45 said yes.  Of these 1 in 45 children, 81% are male.

At this stage, various of my professional colleagues will no doubt be thinking, "Well that's not 1 in 30, is it, Ann."

Aha.  Isn't it?

"81% are male".  Why is that?

We know that we are missing most of the autistic females.  We know that there's a variety of reasons for this.  For example...

We know that some GPs simply do not realise that females can be autistic, so do not refer on.
We know that some diagnostic professionals do not realise that females can be autistic, so do not diagnose...but instead label with things the person isn't.  (For example borderline personality disorder, schizophrenia, anxiety, OCD).   Or only notice other things that really are there too, and fail to notice that there is also autism.
We know that some diagnostic methods use conversational questions that assume the interviewee is male.  I've had plenty of odd conversations about 'Do you like trains', and 'What will happen to this set of engineering equipment if we do this to it' and, "Have you ever collected toy cars".  That will only identify females with more-male interests, arguably.
We know that autistic females (and quite a few males) do not present as autistic.

We know that autistic females (and quite a few males) may not show 'challenging behaviour'.  In other words, distress behaviour visible to others.  They are more likely to internalise it or disguise it. In a recent poll in the autism social media, around 70% of autistic people said they are more likely to 'shut down' than have a meltdown.  Looking for meltdowns?  You could be missing 70% of us.
We know that autistic females are more likely to have standard female hobbies and interests - but take them to extremes of passionate focus.
We know that autistic females are more likely to have friends (or think they have friends...).
We know that a lot of autistic females will fake eye contact, and will have learned to copy face expression and body language.  So will some males, of course.

We also know that a huge number of autistic individuals are lesbian, gay, bisexual, or transgender, or non-binary or genderqueer or many other gender identities.  Research on this is very sparse.  So our knowledge of gender identity, sexual identity and autism is woeful.  For example, diagnostic teams may spot 'butch' lesbian autistic women.  What about the 'femme' ones?  Different cultural styles and norms might mean that some are missed from diagnosis.

There are so many factors that mean we are missing arguably most autistic females from diagnosis.

I can only offer anecdotal evidence, as someone who trains diagnostic professionals and advises nationally on this subject... but is not a diagnostic professional.  I've known a simply massive number of females over the decades.  In schools, workplaces, faith settings, clubs, venues, etc.   Nearly all of the autistic ones are as yet undiagnosed.  Quite a few don't even realise they're autistic.  'After all, autism looks like a 'badly behaved boy', doesn't it... 'Well, no, it doesn't.  That's not even 10% of what autism could look like.  Autism doesn't look like anything at all.  It's not a look.  It's  effectively a brain design. You can't see it from just looking.

So, let's consider what happens if it's actually 50:50 males and females.
1 in 45 is autistic.
81% are boys.

<does bit of maths>
If it's actually equal male/female, then it's about 1 in 28 in total.  Call it 1 in 30.

When I say there's around 2 million autistic people in the UK, I do mean it.

The picture at the top says a lot about how it feels, to be missed from diagnosis.  A woman, sitting alone, despite a crowd of others round her.  How many end up in terrible difficulties because of that missed or mistaken diagnostic path?

We need to do better than this, collectively.  Very glad to be working with Parliamentarians and professionals across the country, to get good thinking in place.

Want good information on this?  Look at the work being done by Autism Oxford UK and their training teams, Carly Jones, Limpsfield School, Baroness Hollins, Cheryl Gillan MP, the National Autistic Society conferences, ReachoutASC and so many other excellent people and groups.  I wish I could name you all in the space we have here.

All autistic people deserve a society that recognises and respects autism, in all its wonderful diversity.  is the link to that data.

Monday, 14 November 2016

Can autistic people be 'pillars of society'?

A "pillar of society" is someone who is highly respected and does a good job in society.
After decades of some groups pretending that all autistic people are a disaster, it's a role we have often been denied. "Oh they're all dangerous and unreliable".  Hmm.  You know that you're hearing prejudice when people 'other' two million people in the UK in such a way.

Yes, it is about two million.  Yes, I know the official statistic is 1 in 100, which is less than two million.  I'm using the national figures in the US, where a careful look showed it's about 1 in 30 boys.  And I'm aware that we are missing nearly all of the females from diagnosis at the moment.  My professional judgement is that we'll find it's 1 in 30 females also.  1 in 30 of the UK population?  That's around two million.  Only 1.6% of those are what we used to call 'real autism', e.g. also with a severe learning disability, speech and communication difficulties, and living in a care home setting of some kind.

So, let's look at the situation with an example or two of the other 98%+.
Person 1 - a highly respected professional running a national practice for the best part of 30 years.  Autistic.
Person 2 - a member of the teaching team working a school as an autism specialist for years.  Autistic.
Person 3 - a national specialist in project management.  Autistic.
Person 4 - a top researcher in a major University.  Autistic.
Person 5 - a senior faith leader, working patiently and carefully for decades.  Autistic.
Person 6...

I could go on for a few pages.  These are just a few of the autistic people I know and work with.  And those whose lives involve art, poetry, music, sculpture, prayer, care work.  Also, of course, those who are not working at present, or cannot work.  Each is a person of unique worth, irreplaceable, loved for who they are.

Me?  I run and own a national professional practice and have done for 16 years.  I'm a wife, a mum, a friend.  I've been in a lovely church for many years now, enjoying serving and helping to lead informal worship for small groups.   I've served as an adviser to some 200 MPs and Peer in the Houses of Parliament for more than five years and counting.   I advise or train organisations across the UK, including the BBC, Royal College of Psychiatrists, University of Oxford Colleges, schools, parent groups, children's centres, social workers, and any number of others.

And I'm autistic.  No, not 'mildly'.  I started off non-verbal.  I have a wide range of sensory difficulties, routine needs, etc.  I cannot see body language.  I'm faceblind.  I struggle with eye contact.  I collect maps and data.  I 'shutdown' and can struggle with tasks that should be really easy.  I learned to work with my strengths.  That's what made a difference.  No therapy.  No cure.

Every time I see these terrible scaremongering efforts...where people take one or two really complex situations and pretend we're all like that, forever....well, it makes me sad.

It makes me sad... because every time we do this ridiculous, 'They are all a tragedy unless you spend a fortune on this 'cure'  thing, we make life harder for all of us.  All of us struggle then to be taken seriously. All of us get distrusted.  All of us get feared. All of us face a darker future.

It makes our lives that much harder.  We may have to fight for years to get access to the simplest things, because some people are then afraid of including us.  No, seriously.  It gets more difficult to be listened to.  It can take years to access meetings, because, after all, 'those autistic people are dribbling flapping things - why would we want one in this meeting'.  Hmm.  I'm quoting, there.   I'm also quoting when I say, "Why would we include autistic people?  It takes too long to include them too."   Fascinating what's said, isn't it.

It has been so exhausting for me, as a professional, that I have had to take some very wise steps to safeguard my health and wellbeing, frankly.  I tend to only work now with groups that take me and my autism needs seriously, and take me seriously as a professional.  I advise that also for my other splendid autistic colleagues across the country.   I'm fortunate to work with a number of really excellent groups who have realised how easy it is to get people like me to be productive and give really good advice.   I'm also challenged by a few who make it ridiculously difficult, then try to blame me for it.

All autistic people need things adapted to make life more doable for us.  In the same way that people who are Deaf or hearing impaired will need to adapt communication and may need hearing aids, loops, etc. 

People like me are the ones who fight alongside others for children to have really good support, really good laws to protect them.  We fight for families to have good help, good respite.  We fight for good education and good employment opportunities.   The moment we are 'othered', demonised, belittled in the eyes of others, we can do none of that.

I'd urge people not to generalise about autism.  I'd urge people to be responsible in their use of language.  I'd urge more fellow non-autistic autism professionals to get their noses out of their research papers long enough to meet a wider selection of us, as people, as friends.  Not as test subjects or 'patients'.   Believe you me, we know when we are being treated as a patient rather than as a fellow professional. 

Sometimes, of course, it's genuine fear that stops some fellow professionals engaging with us; they may have never met an actual autistic person before.  I kid you not.  Some of the autism degrees never require people to have met a single autistic individual. Do be careful who you pick as your 'expert', good people. There's lots of excellent ones out there.  And quite a few who hide behind things when near us, in case we speak to them...which is quite amusing in a way.

Especially, I'd urge us to ask about the creativity of autism. The spirituality.  The caring.  The love.  The honour.  The respect.   The passion.  The determination.  The honesty.  The dedication  The search for fairness and social justice.

If we are not prepared to look for those things, then we are missing nearly all autistic people, in a quest to prove a point that was never worth making.

No autistic person is helped by being portrayed as a tragedy. Or as an epidemic.  Or as a monster in need of 'dog-training'. 

I work for a world where every autistic person is allowed to thrive, grow and love as themselves.  Exploring their own interests, their own passions, their own way of communicating, their own faith or spirituality, their own emotions, their own relationships and friendships. Safely and responsibly, of course.  As is the case for all other human beings.

Thank you for listening.

Sunday, 16 October 2016

"My child is autistic but has no sensory issues"

How a medical examination room looks to me

Over many years, I have talked with many parents about their offspring.  Some will say to me that their child is nothing like me.  Quite often, the statement, " child cannot talk, and has no sensory issues whatsoever".

Up to age 10, I still couldn't use language for communication.  I could repeat words or short phrases, but didn't know that people were couldn't guess what this was for.  It was a noise.

At age 20, I was still struggling to say things.  I disguised it by being the quiet one at the back, always.  If I had enough time to think, I could manage a short conversation.  But it would be such a struggle.  Mostly I hoped to find people who did all the talking.

Even now, I can go non-verbal. 70% of non-verbal autistic children eventually speak.  The rest communicate differently.  Differently is fine.  Many of us are partly-verbal.

Verbal ability is no longer part of the autism diagnosis in the most recent diagnostic criteria (DSM 5).  Not many people know that. A lack of speech is a speech/language condition, not autism.  We may have both things.

Let's go on to the sensory issues.

I was a very passive child.  Very compliant.  I would go into shopping centres.  I would wear what I was given.  I would go where I was sent.  I would do whatever the activity was, as best I could.  OK, I really couldn't do ballet, or Brownies groups, or Sunday School at church.  But mostly I could do things.  I'd get on buses.  I'd go to school.   To the outside world, it would look exactly like I had no sensory issues at all.  None. In fact, I didn't even get noticed as autistic.  I did not know that the world was supposed to be pain-free.

Other autistic professionals nationally say similar things.  For years, they could not recognise their own sensory issues. Some have hyposensitivity to sensory stuff, of course, and therefore absolutely love bright, loud places etc.  So much so that they can barely be removed from them. 

Each of the senses has its own scale of hyper/hypo-sensitivity. Smell, heat, cold, pressure, sight, hearing, balance, taste, texture, hunger, thirst, whether a loo is needed, whether something hurts.

Why do so many sensory processing differences go unnoticed?  Because if the world has always hurt, you don't know that it is not supposed to hurt.  If it has always been exhausting, you don't know that this isn't normal.  If someone is hyposensitive to internal pain, they may not realise they are even in pain.  I thought I was just rubbish at coping with it, compared to everyone else.  So some of us coped by being passive.  Some of us coped by being determined to just push through the pain and fear, every day.  I did the former.  In adult life, I do as much as I can of the latter. I wish I didn't have to.

If someone is able to confidently communicate that they have no unusual sensory issues,  that's good.  There are bound to be a few people who truly have no sensory processing differences.   The latest study on this, "Brief Report: DSM-5 Sensory Behaviours in Children With and Without an Autism Spectrum Disorder", (Dido Green et al, Journal of Autism and Developmental Disorders 2016) shows 92% of autistic people have sensory processing difficulties of some kind.  Huge numbers struggle with background noise.  Nearly 20% can only cope with bright artificial lighting by hiding their eyes from it.  35% struggle to eat because of sensory difficulties. 35% are in such pain/overload from basic daily grooming (hair brushing, showering etc) that they are fighting not to have it done.

Eventually, for many, ignoring pain takes a toll on us.  Eventually, we are so exhausted, so worn down, so damaged, that we can't cope any more.  We see rocketing levels of anxiety, depression, ill health.

For the parents that claim to know the inner world of their child, I'd say 'be careful what you think you know'.  No-one can ever confidently look at that list of senses, and declare for sure what someone else's sensory world is like. 

Autism is an invisible thing.  Others can't see it, and others don't know what our inner experience is like, at all.  For some, sensory issues are what prevent communication, and cause distress behaviours.    That system punishes the courageous and the quiet amongst us. We are expected to endure things.

Most parents truly want to do the best for their child.  I never doubt that.  My own best advice to parents is to not guess on behalf of their offspring.  It's fine just to say "I do not know".  Then, if there are mystery behaviours, perhaps find a good autistic professional who can decode sensory responses that may be missed by parents, teachers and non-autistic professionals.

Thank you for listening.