Saturday 24 March 2018
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
"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
Are you aware that 1 in 30 of the children, young people and adults is autistic?
Are you aware that autism is a brain design, from birth, for life? That it has strengths, as well as challenges in today's society?
Are you aware that half of the children who are abused are disabled in some way, whether physically, through illness, or through neurodiversities such as autism. (IICSA report 2019)
Are you aware that autism is 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? That it's any IQ, any background, any age, any ethnicity?
That it is usually an invisible thing, so you cannot spot an autistic person by just looking?
Generalising: (I do mean this. Everyone is a little different.)
Are you aware that it is a different communication system and culture to that of non-autistic people? Good research on this. Autistic people can be excellent at co-operating with, and communicating with, autistic people. Misunderstandings occur when non-autistic people try to guess what we mean, or what we're feeling. And vice-versa. Both need to develop understanding of one another.
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.
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 may be persistent in ensuring justice is done. This is culturally and ethically expected in the autistic communities, not a sign of rudeness.
f) Autistic people may tend to give a lot of information. This is culturally expected in the autistic communities also.
g) Huge numbers are victims of crime from non-autistic people. 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.
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 thus be very naïve 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. Myths about individuals alleged to be autistic, from decades ago, who allegedly did X or Y to someone. It's scapegoating, in that context.
Please, get some good advice.
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. Yes, Bishops. We have a couple of autistic Bishops. No, I don't name them. That is their decision. Frankly with everyone pretending all autistic people are a burden/danger (nonsense..sorry, but it is), who can blame the vast numbers of autistic people who hide, eh?
https://www.oxford.anglican.org/mission-ministry/faith-in-action/disability/ is a link to the current guidelines around autism and church, hosted by the Diocese of Oxford.
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.
The picture at the top is one I took in a church. It shows a statue of 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. All part of the one body of Christ.
Sunday 18 March 2018
Cold snow, caught in bitter winds. Twilight, with no shelter from Spring's leaves.
A countless number whose lives are no longer...
whose graves are unmarked
whose cries for help went unheard
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.
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.
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
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.
Thursday 1 March 2018
I want to talk about something important.
We hear a lot about 'behaviour', as if what happens to us during overload is a bad attitude.
Let me talk you through a shutdown that happened to me this week.
It had been quite a few weeks for me. I'd tried a lot of new things. New venture to a different country with lovely friends. New venture to a series of lectures in a new location. Wonderful. New venture to a part of London I'd never visited before, to be a panel speaker at a conference.
News that a close friend had died.
News that an Uncle had died.
News that my partner's operation hadn't gone to plan.
And then, news that a place of faith had done something that would make it near-impossible for me to be there. A thing that meant so much to me, to give me a chance to find peace and healing.
I had reached, 'can't'. The social imponderabilities had reached such a level that I could no longer function.
The whole world starts to slow down. Become unprocessable. The picture at the top shows how it starts to look. Too bright, too loud, too dazzling, too blinding, too deafening.
I can no longer process sound and voice. The pain starts. Pain isn't quite the right word for it. I'm entering a brain event. The social centre of my brain can no longer handle the load and is now electrocuting itself. I lose the ability to work out who's who, what they want...and to make sense of any social situation during that episode. If I don't rest, the episode can go on for hours. I lose the ability to speak coherently, and if it's really bad, write coherently. I can lose the ability to move.
It is terrifying to experience, a brain electrical storm. Utterly terrifying. A literal, real brain event, not a choice.
Afterwards, exhaustion. Days to recover from a bad one.
As someone who has to keep functioning on some level as a carer and as a business owner, I do all in my power to avoid these events. Forward planning, careful rehearsal, advance information. Learning about people around me so that I can avoid social eek. Avoiding people who are shouty and nasty, or ostracising and excluding. Anything that could give that brain circuit too big an 'ask'. Avoiding sensory overload. Flickering lighting, deafening sudden noise, overwhelming chatter.
I can go for weeks without shutdown, as an adult, if allowed to.
Sometimes, I'm pushed into one.
I will do all in my power to avoid one.
It is not a question of having a 'bad attitude' to certain people and needing to forgive them.
Some people cause shutdowns, and are not safe for me to be near.
People who tell untruths about sensory and social hazards, for example.
Shutdowns are a hidden majority of autistic experience. We hear about meltdowns, where behaviour looks angry. But shutdowns -little is ever said,
We need people to know.