The CofE 'Parliament', General Synod, is about to meet. One of the big subjects this time is going to be LGBT and the church. There are going to be more shared conversations. Various people will be encouraged to talk, and to listen. Some in the room will be lesbian, gay, transgender, bisexual, I believe. It's a very confidential set of talks, this time.
We know that some 300,000 of our parishioners in the country are autistic and also part of the LGBT community. Yes, that many. At least. Probably 30% of autistic people. As we know, it's not a lack of empathy, a sign that someone is dangerous, or a 'disease'. It's a sensory processing difference, where we take in too much info from the world around us. And understand language very very literally. And need good clear rules. Result - exhaustion and real difficulties communicating, in today's modern fast-paced world. We know autistic people are generally more moral than others, more accurate, more dedicated to a task. Half are female. Nearly all are adults. Most are completely 'invisible'.
We know from research that autistic people are as likely to be Christians as anyone else. We're as likely to try to go to church as anyone else.
We're also an immensely isolated people. Most have only one 'real life' friend in the world, because our way of communicating is not the same as that of most other people. And because we cannot access the spaces where most people meet to make friends. Including many church events in busy, noisy halls lit by fluorescent flickering lights. Those can be like an intense strobe light for us.
What's it like to be doubly isolated? By being autistic, and by being gay?
What is it like to disclose that to a group of Christians?
I've had very mixed responses. I've been a pioneer of this work for some time. I wrote the autism guidelines for the Church of England. I'm an adviser to the Government on the subject, amongst many other places.
I've had some Christians who have been lovely. That's super. Including a few senior people in our church, and a good number in my local church.
But...
I've had some Christians who have responded by actively shunning me. For an autistic person who already struggles to make and keep friendships, that's no small thing.I've had some who have responded by immediately taking jobs away from me. Or telling me that I must work for free, because they are doing me a favour in letting me be there at all. For a population of people who are rarely employed, often immensely talented, but who mostly live in abject poverty, that's no small thing. A very large number of the homeless are autistic people who found they could not live off nothing.
I've had some who have told me that I should be ashamed of myself. For an autistic person, that's no small thing. We've lived lives where from birth, we're told that everything about us is wrong. Or a laugh for others. Or something to be pitied. Shame? Yes, we know that feeling really well. The cold, lonely street of Shame is where we are already asked to live. Low self esteem is something we already know all about.
I've had some who have told me that they daren't sit next to me any more, in case people think they are a lesbian too. How does that work? Do they refuse to sit next to Black individuals, in case people think they are Black? Do they refuse to sit next to men, in case people think they are male? Do they refuse to sit next to someone who is diabetic, in case people think they are diabetic too?
We've barely begun to talk about the experiences I've had, with some Christians.
The ones who tell me that I am worse than a murderer if I am actively promoting equality and love for LGBT people.
The ones who tell me that I am a danger to young people, surely, if I have a different innate sexuality. In reality, I've advised on safety for young people for decades. And brought up a fab son.
There's ones who tell me that I should go into 'conversion therapies' to make me act totally non-autistic, at massive cost to my wellbeing, so that they can feel comfortable being near me.
It adds to the violence, sexual assault, defrauding, bullying and mocking I get already, because I'm female and autistic.
Imagine how hard it would be to work through all of that even without being autistic.
This is my experience of the endless, boundless love of Christ, as shown to me by some fellow Christians. Not all. Listen carefully; this isn't some paranoia. Nor is it unusual, alas. I am in contact with a very large number of autistic people through my work. My experience is far from unusual.
I am very grateful for the lovely people. I am very glad of my local church, who have been excellent in including me. I'm glad of an outside society that has taken such huge strides forward in understanding autism, and in understanding sexuality.
But I am very sad that we as a church have, as yet, nothing to say to the 300,000 who live a life autistic and LGBT. Not for us the shared conversations. Not for us the banquet of togetherness.
In the Bible, it tells me that we are to love one another. And pray. So I love all who have offered us 'othering', hate, pain, fear, and shame. Who have gone to others with false tales of how awful we all are. And I pray for each of them. One day, we will be together in God's heaven, and people like me will be sat with everyone else...next to them...at that banquet.
When, then, will there be the chance to say to my welcomer, our Lord Jesus, "I don't want her sort here". "She's not really suitable for this kind of banquet". "Can't people like her sit somewhere else?"
So, when, my friends, do we get that freedom to say it now?
Prayers assured for all in those continued shared conversations.
For peace, for good listening, for new friendships. For good disagreement that respects genuine prayerful scriptural theological difference.
And, most of all, prayers for those who are never at that table. Who are not able to share in those new friendships. But whose lives are as impacted as anyone else's lives by the decisions taken. Already-silenced voices, doubly and triply silenced.
We are your friends, and fellow Christians, too. Whether old or young. Whether of high IQ or any other IQ. Whether verbal or non-verbal. All are loved, and all are called as disciples by that same Jesus.
Wonderful, isn't it.
So, how do we find out what of God is autistic, and gay, together? Who is willing to share that journey?
I'm seeing a lot of materials written for autistic older secondary school pupils and University students. Lots about how to organise diaries and get homework in on time. Lots on basic sensory stuff now (which is good).
And, in some of the brand new shiny materials being promoted at the autism shows, a single mention of sex and intimate relationships.
Just one. One sentence on it. And, almost invariably, that sentence assumes that all females are 'straight', and of standard gender identity.
Not so.
The latest research we have on autistic females shows that we're struggling to find even 50% who confidently tick 'heterosexual' and 'female' on boxes. They're ticking
Lesbian
Bisexual
Queer
Neuroqueer
Trans
Other
Asexual
and other identities and sexualities. Good research, from good researchers. Online polls in autism communities. Everywhere, a figure of between 30% and 50% is emerging (depending on the questions asked).
The advice to 'See a GP about contraception so you do not become pregnant' is not always helpful.
For a start, many of us cannot access healthcare. You might as well order us to fly to the moon by flapping our arms, and get condoms there. We often cannot communicate our needs fully. We possibly don't know what options there are, so cannot prepare a conversation ahead of time to explore it. We can't access the bizarre, "Turn up for an appointment at 10 and get seen by 12.15" stuff. Sitting under fluorescent lighting, in the medical stench, trying to prepare an unknown conversation for a random number of hours? We can't do that. Our brains literally overheat from the load of that, and we leave. So, unsafe, uneducated, possibly predatory sex awaits.
And, when we do access the GP, our learned language is, "I am asking about contraception so I don't get pregnant"?
OK, that's one possibility. But, two lesbians would find it really hard to get pregnant together. Trust me on this one. So now we've issued a lesbian with a box of male condoms and The Pill, because she didn't know how to explain. Is this an improvement in her University life?
We need to do better than this. The future love, security, safety and wellbeing of autistic young women is so important. And, to be clear, so is the safety of autistic young men. They too often report a different sexuality or gender, and they too get almost nothing helpful-to-autism said about any of this through schools and colleges. Some would say it's not the job of schools and colleges. In that case, why is it in the materials at all?
We know that some 70% of autistic women report that they have been sexually assaulted. A huge number report rape, domestic violence. It's little wonder. They are left with no way to discuss their identity. To talk in autism-appropriate ways about relationships and boundaries, about gender identity. We need more than giving us one impossible instruction, in our schools and colleges. We need more than one sentence as an afterthought. We need directing to good materials, to people who can explain and understand. People who won't judge us even more for 'coming out'. It's part of why I worry a lot about the more traditional faith groups running autism care homes and colleges. How are those faith groups working through their own, "All LGBT stuff is wrong" beliefs, when they could have 50% of their young autistic people feeling so very low and scared as a result of that? Genuine, honest question. We're often not even close to looking at the answers, because no-one has realised the statistics, I suspect.
Please, good authors and educators, talk with those of us who are part of the LGBT community and are autistic... and are professionals with plenty of experience of education. Don't guess at this stuff. It's too important to mess up.
Many thanks.
Supposing this was your view of a brightly decorated classroom with fluorescent lighting?
Where is the teacher? Who's who, around you?
Imagine deafening noise. Chatting. People moving around in classrooms next door. People walking in the corridor. Computers whirring. Overhead projectors buzzing. Chairs scraping on the floor. Keyboards clicking.
Imagine stifling perfumes and smells from antiperspirants. Clothing fresheners. Soaps and shampoos. Toothpastes. Paints. Canteens.
Now, sit really quietly and nicely, and answer all the questions correctly.
We're not being 'disruptive' or 'un-co-operative'. We're blinded, deafened, afraid, and often in sensory pain.
Be aware of autism, and why autistic pupils may behave as they do.
It's very understandable that they want to escape to somewhere quieter.
It's very understandable that 'under the desk' seems like a good option.
It's very understandable that they may panic when asked to eat in an even noisier, more confusing canteen/restaurant.
It's very understandable that they may stay on the edges of a crowd, where they feel safer from the relentless noise and pain.
It's also very understandable that the melee of social time during breaks and lunch is utterly exhausting, not refreshing, after all of this.
We don't improve when people shout at us, or force us to stay in the pain for longer, or bribe us to endure it for longer. We're not being weak, we're not being stupid. We just can't cope with this environment.
Get different lighting. Do all you can to keep classes quieter, or offer noise cancelling headphones. Use sunglasses to help with bright lighting. Allow a break if needed. Keep instructions simple and clear. Write as well as say, if you can. Allow us a quiet corner or hobby during free time.
Just be aware that classes, canteen and playgrounds are not a friendly environment for most of us.
If we are allowed to be in places where we thrive, we become society's best and keenest workers. Honest, diligent, passionate about our hobbies and interests, pioneers of social justice.
Get to know us as people. It's always worth it.
We get a lot of untrue things stated as 'facts' about autism. Often from research done decades ago, before we had any clue what it is, or isn't.
For example, "BACKGROUND: Autism currently affects 1 in 68 children. Boys are four times more likely to have autism than girls. About 40 percent of children with autism do not speak, and about 25-30 percent of children have some words at 12 to 18 months of age and then lose them. Autism is a neurological development disability that generally appears before the age of 3. It impacts the normal development of the brain in the areas of social interaction and communication skills."
Well, no. The underlying data shows it's about 1 in 30, not 1 in 68.
There are multiple gender identifications with autism, not just male/female.
There are as many autistic females as males, but we've been rubbish at diagnosing them.
The statistics on how many of us speak are decades out of date. The huge majority of autistic people speak. Perhaps not always, perhaps not using the same language structure as the majority. Perhaps 'speaking' using technology.
The myths about how many autistic children regress have very recently been debunked by science, which also noted many non-autistic children regress for a while. It appears to be a natural part of autism brain development in many/most cases, they muse.
It's a neurodiversity, mostly made into a disability by a society that disables us continually, then blames us for it.
We have a normal development of the brain for autistic people, and socialising/communicate autistically, rather than in the ways that most other people do. This is not a broken way of socialising. It's a different way. When enabled to thrive as #actuallyautistic people, most of us do really well.
So, here are some surprising facts.
Well, apparently surprising to some.
Probably half of autistic people are female.
Autism is not a mental health condition. It is in the Psychiatry manuals because Psychiatrists diagnose brain function differences as well as mental health conditions.
Autism is permanent. One does not outgrow it or cure it. One can be taught an exhausting way to disguise it in front of others, so others can be less prejudiced about us. That is not a cure. That is about others and their reaction to us. Some were misdiagnosed as autistic, which explains any genuine 'outgrowing' of it.
Autism has always existed. It is part of human diversity.
A third of autistic people in surveys says they are LGBTQ.
Autism often has positives. Honesty. Integrity. Morality. Fairness. Passionate focus. Extreme expertise in areas of work. Passionate about social justice. Able to keep asking for fairness. Senses that often are better at detecting things. Generalising, but all backed by research. It would be an advantage in ancient village settings, for example. It is not an advantage in busy noisy socially-obsessed modern society.
Only 1.6% of autistic people in the UK is in a care home. I did the research for this.
We are no more likely to be violent than anyone else. Autism does not cause deliberate violence. At all.
70% of us do not have mostly 'meltdowns'. We have shutdowns. Many have no 'meltdowns' at all.
We are no more likely to have a low IQ than anyone else. The old statistics were from decades ago, before we found the vast majority of autistic people. We're still finding more and more. It was just really easy to find the ones with very low IQ or other really noticeable differences.
We are not 'challenging'. We are different. Sometimes we are distressed because we are overwhelmed, afraid, exhausted, in pain. Usually cause by someone misunderstanding autism and our sensory/routine/communication needs.
We may be in extreme pain and fear in some situations. Understandably we may wish for that to stop. Understandably, people in pain and fear may not be listening too well. This is not 'challenging behaviour' by us.
We cannot see the expressions of others in 'real time'. This may lead to misunderstandings. These are not anything to do with deliberate cruelty or lack of caring.
We will communicate differently. This is not cruelty, lack of caring, or rudeness by us.
Repetitive movement or sound is part of autism, not a 'stereotypy' that needs 'retraining'. Unless it causes physical harm of course.
Learn about autistic people, direct from us. Fabulous people, usually kind, creative, focused and wonderful.
.
Thank you for listening.
Recent months have involved me training an increasing number of therapists. Excellent individuals. Some have asked questions about my view of some other 'interventions' and therapies. Amongst these, Applied Behaviour Analysis (ABA) and Positive Behaviour Support (PBS).
Having worked with an ABA charity for two years, I have a good knowledge of what it involves. I simply disagree with its principles. There are indeed some good places and some good practitioners who adapt it to be a respectful process. I have no doubt of this. I know some very nice people who use ABA. And I also have no doubt that some people find some parts of it useful to solve their particular situation. I still do not like the underlying principles of ABA. There are, in my view, better and more respectful starting points for working with neurodiverse individuals. ABA often teaches children to endure pain, fear or exhaustion, very nicely. I'd rather they were not in pain, fear and exhaustion, personally.
This PBS thing? It interests me. Few realise it is a form of ABA. A lot of Councils continue to pay a fortune to places to use it in care home settings. And yet, see if you can find out what it actually involves. I have tried. I got stuck in a proverbial loop of "...it's evidence-based practice". What does that mean? "Ah well, we analyse why a person behaves as they do, and gather folder after folder of carefully indexed, colour coded data, and then we do something that changes the 'problem behaviour'. It's evidence-based." OK, but what behaviour are we counting as problematic? Who determines that? On what basis? How does the colour coded folder , put together over weeks and months, help little Jonny not be in pain any more? Or for longer than necessary?
That's when it often goes quiet. Difficult to find out how the PBS teams are trained too. There's a Diploma in it, from a University. There is a reading list. On the reading list, the 'required reading' book. It's called Individual Positive Behavior Supports, by Fredda Brown et al (2015, Paul Brookes Publishing). There is no electronic version, as far as I can see. The book costs the best part of £70. So I bought one. Not many people will be able to afford that, to find out what it is.
PBS is used for 'challenging behaviour'. Not specifically for autism. But it's used a lot now as a way to get autistic people to behave in respectful ways towards others, when in intense pain, exhaustion and fear. Rather, that is, than focus on first changing the situation causing the pain and fear. Thank goodness non-autistic people always behave wonderfully when in pain, fear and exhaustion, eh. Oh wait, no they don't. So, it's just us that has to do that?
Because autism is a sensory processing difference, at its core, I turned to the contents list at the front. Nothing on sensory needs. It talks about Applied Behaviour Analysis as the framework for PBS, though. And Ivan Pavlov's contribution to the underlying structure of ABA. Yes, the man who did the dog training psychology stuff.
I turned to the index. Nothing specific about sensory processing. An entry on 'sensory stimulation', which says that environments should be "interesting and stimulating". Not necessarily for autism of course. Some may find 'interesting and stimulating' environments to be a sensory overload. So that may have the opposite effect from that desired.
I had a look at how PBS supports vital autistic repetitive movements ('stimming' such as rocking, flapping, etc). P 289 tells me that, "..at times, problem behaviour is unrelated to the environment...for example stereotypic behaviour tends to occur more frequently amongst individuals with autism...". Problem behaviour? The sort that PBS trains people not to use? Strangely enough, a lot of support plans from PBS seem to have 'extinguishing self-stimulatory behaviour' as a goal. Yet we know from latest research that some use hand flapping as a way to gauge distance to objects, or to process what we are seeing. Some use rocking so that we can tell where we are in relation to objects. ABA and PBS want to take away useful adaptive strategies, in a lot of situations, because....why? Serious question. Yes, if it's self-injurious, of course one intervenes. 99% of stims are not. So....
OK....moving on...what about autism itself? There is quite a list in the index about "Autism spectrum disorders". Not my favourite phrasing for what is a neurodiversity, not a disease or fault. Nothing about what autism is, anywhere in the book. We learn about J, as an example, though. J is terrified of loud noises and runs away. Quite right too. They cause the equivalent of an electric shock to the brain, for some of us. This is a problem behaviour, running away from the noise, we are told. J is taught that if he hears a loud noise at school, he is to put his hands over his ears AND point to a door so that he can leave. Now I'm not a scientist, but will someone tell me how J can do both things at once? Whilst terrified and in pain, possibly stunned from an internal electric brain-shock? (Good research happening on this). Nowhere does it help J stay in the classroom by removing the loud noises, or indeed offer J earplugs or similar. It is up to J to learn how to ask really nicely when in distress, and do without his time in the class. By using lots of analysis, graphs, statistics, observations, plans, folders, and a form of polite repetitive coercion. OK...In another extract from the book, we learn that family X has a child who is autistic. He became distressed when asked to do things causing extreme pain to autistic people (entering and staying in a noisy, smell-filled school canteen amongst jostling chatting people). The PBS plan involved them teaching him how to adapt to the situation. Rather than allowing him not to be in pain.
Another parent, we are told, has set a goal for their child of going to parties. No, really.
Would any of my fellow autistic professionals - or indeed other therapists - like a cup of strong tea? I need one.
I remain very concerned about what PBS is attempting to do, with autism.
This is not, in my view, a suitable system for autism. It has been mis-applied, in my professional view. I'd like to see some research into exactly what is going on with this 'evidence-based' programme that seems not to know anything about autism itself.
Would you?
For half an hour, yesterday, I listened to a mother, talking about her child., online
He 'has autism', she explained. It is something separate from him, she said. This isn't the real him, she said.
"He's hidden behind autism. I could tell you about life with my son, she continued, or I could tell you about my life with autism." Paraphrased.
When he was born, said the mum, for a while he was perfect. And then, he wasn't, because he 'has autism'. Yikes! From hero to zero, just like that.
There was more. Half an hour more. Relentless tragedy. Age of child, below school age. We learn their full name. I was able to trace the family within a moment online. So could anyone else.
Parents, please stop doing this.
I am an 'autism parent'. And I'm autistic. I started off non-verbal. Sometimes, I still am non-verbal. Autism isn't something hiding who I am.
Nor is there a 'real Ann' hiding behind my gender.
Nor is there a real Ann hiding being my colour.
Or my sexuality.
All four things are me.
It hurts deeply to be told that we need to be someone else, something else, in order to be loveable, accepted, respected. You are loveable as you are. So am I. Once we learn to honour one another's differences, that becomes so clear.
Your child can understand what you are saying/writing. Or, they soon will.
Just because they appear not to be communicating? Well, believe me, they know.
Your child will one day be able to find that stuff, online. It never goes. It never disappears, that online recording. It'll be there, in some form, forever. With their name on it. With you, their parent, explaining how you thought you had a perfect child, but have had to put up with second best. This allegedly faulty child that you didn't want. Oh my.
Is it any wonder so many of us commit suicide, or live with anxiety, depression and low self-esteem? The life quality for autism is terrible, and no, it's usually not the autism doing it. It's attitudes. The attitude that we are broken and need fixing. The attitude that we are the child people didn't want.
We learn differently, we become skilled at things at different rates to you. Without the right support, it can certainly be exhausting in the early stages, yes. Only 1.6% of autistic people live in care homes. Only a few % never learn to speak. In fact, not speaking isn't even part of autism diagnosis any more. That's a separate condition. It can occur alongside autism. It did with me.
Looking at a child, and thinking, "Oh it will always be like this", well, no, it won't.
Your child will grow up to be different and wonderful. Always. One cannot cure femaleness, or whiteness, or gayness, or autism. It is a design of person. It normally has benefits, if only people will look for them. Two million autistic people in the UK on one estimate. Every one of us someone with something to offer the world.
Most are honest, fair, moral, passionate about social justice. Dedicated, expert in some interest. Quirky, humorous, a friend, a partner, a parent., a colleague, a professional.
Right now, when they are young and mostly non-verbal, that is so hard to see, isn't it.
Never ever make their future a nightmare for them to live in, and their past a nightmare of shame and 'othering' for them to remember.
Don't do that to them, please.
By all means talk about how you need better support and services. And how difficult it is for you, and your fine young person, to cope without that adequate support level. That's fair.
It's why I work nationally, where I can, with many fine others, to make a difference to that. So you and your children have that better future. It doesn't help me, or them, when life gets made worse by wading through that endless negativity every day.
Please don't turn your child into a model of deficit for the world to look at. An exhibit to be stared at. It hurts them.
Learn about autism, from autistic people. Lots of us who are explaining this to you. Not just me. Learn about sensory differences, learn about brain overload, learn about why your fine young person responds as they do.Thank you for listening.
Few things are as dismissive, disempowering and silencing at that comment. "Oh, that autistic person? You know what they're like. Always making a big fuss. Best to ignore them."
I've heard it, in various forms, rather too often.
To be clear at the start, many people are fantastic. Encouraging, enabling, kind, caring. But a few - well, they are not.
Let's look at some cold, hard facts.
There are well over a million autistic people in the UK.
Only 15% are in proper employment, despite a goodly number having the most amazing skill sets.
On average, we'll die some 16 years earlier than others, because of the immense pain and stress we are forced to live under. Because of lack of access to basic things. Because of lack of help for medical conditions. Because most buildings are inaccessible for many of us, and no-one has really cared. No, really. Not even a BSI Standard to enable access to important things like hospitals and education.
70% of autistic women have been sexually assaulted.
30% of autistic women have been raped.
Most autistic people have been defrauded by people they thought of as 'friends'. Most are badly bullied at some point in life.
Most autistic people are lucky to have one real friend in the world
Some of the alleged 'help' involves torturing us with electric shocks, and taking away everything we hold dear, to persuade us to comply with non-autistic people at all costs
Many live in poverty, or on the streets.
Many end up with chronic health situations that were totally avoidable. Including mental health conditions around anxiety and depression.
And we are overreacting to our situation, are we?
Make sure you have a look at this: http://www.robot-hugs.com/tone-policing/
Thank you for listening.
