Over the decades, as an autistic adult, I've had some unusual experiences with non-autistic leaders.
Many good experiences, with many good leaders, of course. But goodness me, there's been some very odd thinking, from a few.
I am a very persistent person. It takes a lot to get me to back away from something. It's never done lightly. This is common in autism; persistence, dedication, integrity and accuracy are our 'thing' (generalising). Yes, autistic people have our fair share of challenges to overcome, but it usually comes with good stuff too.
I've co-owned and run a Professional Practice for more than 15 years. That involves immense dedication, teamwork, accuracy etc. I won't claim it has been easy. But together, we've created something that we are so very proud of.
I've been married for 27 years to a lovely other half and we have brought up a marvellous 22 yr old autistic son. Those things take dedication and integrity too. Especially for someone like me who was born with a different sexuality.
I was Trustee of two major charities. One, for many years.
I was Governor of a large Primary School for many years.
I've worked as an autism adviser for some 20 years, doing consultancy work and training for a large number of organisations including the Government, Royal Collection, National Trust, BBC...in fact, most of the 'big names'.
All of it takes teamwork, integrity, persistence and having something to offer. I could do none of it without the fantastic people who work with me, or lead those groups and enable me to give of my best. I'm not the most important person in any of those settings - but people want to know what I can bring. And I'm happy to do that.
And yet...the unusual experiences have been there.
One large group who have spent the last eight years trying to convince themselves not to talk to me, in case I am dangerous or too much of a burden (No, I kid you not. It's been entertaining, and worrying, in equal measure).
One other large group who invited me to be Chair of their enterprise...dumped the whole job and two others on me without a moment's handover...held meetings in a totally non-autism-friendly way... and wondered why I handed the job to someone who could do it in that format.
Then blamed me for being 'unreliable'. And told others not to use me.
Let's look closely at that. If people make it impossible for me to do a job, due to my disability, then it's me being unreliable?
So, by that logic, if a group hires in a Chief who is a wheelchair user, and then they hold all the meetings at the top of a flight of stairs, it is in fact the fault of the wheelchair user. Is that right? Well, then it's not right with autism either.
Let's not do this stuff to autistic experts any more, please. If people want our skills and talents, our integrity and accuracy, then their group is going to have to show some respect. The same as we show to them when we communicate in their chosen language (not ours), in their meetings which are held on their terms (not ours).
Blaming us for the errors of others is truly not OK. It's the opposite of enablement.
If you are going to ask an autistic expert to help, make sure you ask what they need - and make sure you can offer that. Do not ever think to blame them for not being able to access something.
Saturday, 15 August 2015
Wednesday, 15 July 2015
Equal Treatment is Not Equal in Effect
In faith settings, sometimes someone says to me, "Oh but we treat everyone the same, so that's evidence that we're fair".
It isn't fair to treat everyone the same. Let me take an example:
Disability advisers. Often in church groups, someone has the idea that a region needs a disability adviser. Not such a bad idea in itself. After all, 40% of parishioners are disabled. The Archbishop has, wisely, said that we need to focus on disability as a key issue. In the CofE, for example, there are an average of 11,000 disabled parishioners turning up to church in every Diocese.
Disability is a big subject with big money. It's why disability advisers to industry are paid a very good sum and are properly accredited after extensive training. Access is a legal liability, the same as it is a legal liability to have fire extinguishers and buildings insurance. The court awards for failing on disability access top £1 million a case in London, for example. Not because disabled people are nasty sorts who like suing people. But because they are already often struggling to cope in unfair systems and inaccessible buildings. Already perhaps unwell or in pain. And making their lives so hard that they suffer further injury or distress - carelessly - is not OK. The Courts are quite clear on this. Places have a legal duty of care, even if no disabled people attend. It has to be planned for in advance, in an expert and considered way. That's the law, and churches have to follow it to the same standards as shops. Well, they do. I don't make the law. But I do think that's right. Jesus was very loving towards disabled people and spent so much time with them. It should never ever be a burden to include the marginalised at God's table.
Disability is also complex. There are many major disabilities, all with different needs. Almost none of them have to be expensive to sort out. But you need people who understand autism, learning disability, mobility issues, visual impairment, hearing impairment, mental health, coeliac disease, epilepsy and a good few other more major ones. Proper training skills, expertise in writing materials, knowledge of buildings access needs for each disability. It takes a whole team working together to do a proper job for a region or Diocese. It needs someone who can put together that team and communicate really well with every department. Properly enabled and with proper authority.
Often, regions decide that the right person for the job is a solitary disabled person, working a couple of hours a month. Then they hunt around for cash to fund it, and decide they can't see any immediately. So the next idea is that the person will work for free.
"But that's not fair!", some people will say. "Oh yes it is", they respond, "After all, we don't pay some of our clergy".
There it is. Right there. The thing where equal treatment is not equal.
Disabled people already, as a group, live in poverty. In some disability groups, only 5% are in full time employment. They already mostly live with pain or loss of function. They already live with bullying, marginalisation and abuse. They already mostly live on the margins of church, often unable to access it. They may well have children who also live with disability in a society that doesn't adapt for it. And some turn to this extremely disadvantaged group and say, in effect, "If you want to go to churches, you can work for free to make them accessible".
Equal treatment is not the same as fair treatment. At all.
Be very wary about asking disabled people to work for free. Especially if asking that they have no employment rights, no proper ongoing structured industry-standard training from qualified experts. A day at the start of the job isn't it. No insurance cover? No access to a support network? No access to counselling or spiritual direction? Especially if there is no planning for what happens if it goes wrong....if someone sues. Who gets sued? The church? The Diocese? The disabled volunteer? I've seen that happen.
It's not a couple of hours a week to do the job. We're asking people to go to some 400 churches per Diocese and train hundreds of staff to legally-accountable standards.
The church is not a corporation with a lot of cash. But if we can find money for fire extinguishers and insurance without complaint, and understand that those help save people from injury, do we need to make disabled people work for free...and claim that this is their Christian duty?
Or is it our duty to make sure that the most vulnerable, the most marginalised in our churches are not taken advantage of as a group? Even accidentally?
It's a justice issue. We need to think very carefully what we, as a faith group, say about the worth of especially marginalised people.
It isn't fair to treat everyone the same. Let me take an example:
Disability advisers. Often in church groups, someone has the idea that a region needs a disability adviser. Not such a bad idea in itself. After all, 40% of parishioners are disabled. The Archbishop has, wisely, said that we need to focus on disability as a key issue. In the CofE, for example, there are an average of 11,000 disabled parishioners turning up to church in every Diocese.
Disability is a big subject with big money. It's why disability advisers to industry are paid a very good sum and are properly accredited after extensive training. Access is a legal liability, the same as it is a legal liability to have fire extinguishers and buildings insurance. The court awards for failing on disability access top £1 million a case in London, for example. Not because disabled people are nasty sorts who like suing people. But because they are already often struggling to cope in unfair systems and inaccessible buildings. Already perhaps unwell or in pain. And making their lives so hard that they suffer further injury or distress - carelessly - is not OK. The Courts are quite clear on this. Places have a legal duty of care, even if no disabled people attend. It has to be planned for in advance, in an expert and considered way. That's the law, and churches have to follow it to the same standards as shops. Well, they do. I don't make the law. But I do think that's right. Jesus was very loving towards disabled people and spent so much time with them. It should never ever be a burden to include the marginalised at God's table.
Disability is also complex. There are many major disabilities, all with different needs. Almost none of them have to be expensive to sort out. But you need people who understand autism, learning disability, mobility issues, visual impairment, hearing impairment, mental health, coeliac disease, epilepsy and a good few other more major ones. Proper training skills, expertise in writing materials, knowledge of buildings access needs for each disability. It takes a whole team working together to do a proper job for a region or Diocese. It needs someone who can put together that team and communicate really well with every department. Properly enabled and with proper authority.
Often, regions decide that the right person for the job is a solitary disabled person, working a couple of hours a month. Then they hunt around for cash to fund it, and decide they can't see any immediately. So the next idea is that the person will work for free.
"But that's not fair!", some people will say. "Oh yes it is", they respond, "After all, we don't pay some of our clergy".
There it is. Right there. The thing where equal treatment is not equal.
Disabled people already, as a group, live in poverty. In some disability groups, only 5% are in full time employment. They already mostly live with pain or loss of function. They already live with bullying, marginalisation and abuse. They already mostly live on the margins of church, often unable to access it. They may well have children who also live with disability in a society that doesn't adapt for it. And some turn to this extremely disadvantaged group and say, in effect, "If you want to go to churches, you can work for free to make them accessible".
Equal treatment is not the same as fair treatment. At all.
Be very wary about asking disabled people to work for free. Especially if asking that they have no employment rights, no proper ongoing structured industry-standard training from qualified experts. A day at the start of the job isn't it. No insurance cover? No access to a support network? No access to counselling or spiritual direction? Especially if there is no planning for what happens if it goes wrong....if someone sues. Who gets sued? The church? The Diocese? The disabled volunteer? I've seen that happen.
It's not a couple of hours a week to do the job. We're asking people to go to some 400 churches per Diocese and train hundreds of staff to legally-accountable standards.
The church is not a corporation with a lot of cash. But if we can find money for fire extinguishers and insurance without complaint, and understand that those help save people from injury, do we need to make disabled people work for free...and claim that this is their Christian duty?
Or is it our duty to make sure that the most vulnerable, the most marginalised in our churches are not taken advantage of as a group? Even accidentally?
It's a justice issue. We need to think very carefully what we, as a faith group, say about the worth of especially marginalised people.
Sunday, 12 July 2015
Nothing to learn about God here...move along..?
Sometimes I have an awkward conversation with church folk.
I ask to join in, saying that there are an awful lot of autistic people, and our voices count too.
For example, some 10% of LGBT+ people are autistic. Are we represented at the Shared Conversations on CofE LGBT matters? No-one knows. No-one has asked, it seems. Maybe we are, maybe we're not. Who can tell.
And normally there's someone who says, "Why should autistic people get a special mention? If you get a place, what about me? After all, I have diabetes, so why don't we have a special number of places for diabetic people? Or people who enjoy going to the theatre? We can't cater for every group, as it's just ridiculous".
Is it? It betrays an extraordinary lack of knowledge of autism. And of God, I'd argue.
Autistic people encounter God and faith differently. We have a different sensory system. We see differently. We hear differently. We are affected by texture, smell and physical contact differently. We process words differently. We see people differently (often being faceblind for example, and not able to recognise folk from their faces alone). We are rule-driven, not social-relationship-driven, and that means that our reading of the Bible is different. We socialise differently. We form relationships differently. Not in 'broken ways', but ways that represent something new, something amazing to learn about. Truly amazing.
What of God is represented in what we encounter? What of His word can we learn anew by listening to our 'take' on the Bible?
How does the word of Scripture sound to autistic lesbian ears?
How do faith images impact on eyes that see colour and texture differently?
What is it like to live with multiple disadvantages, from birth - in church life?
Is 10% of a group 'too small' to think about including?
What do we lose by not asking, by not including?
It's tempting to see autistic people as just asking to be included in order to make a point. In order to be a nuisance. As some annoying group asking to be 'catered for'. But it's not that.
It's about having something so worthwhile to contribute. It's about us hearing something really important about how we fail to see really big groups of people (some 300,000 of us in the country who are autistic and LGBT). It's about who has the right to decide things for us, without asking us or consulting with us. It's about who gets to impose pain and fear on us, quite accidentally, because they failed to ask our needs too.
No, it's not like leaving out people who are keen on hockey, or those who prefer the 8am service to the 10am service. It's about a group of people who are routinely bullied, excluded, assaulted, marginalised, forgotten and mostly live in abject poverty. And about a church that needs to do better than, "Well, your voice doesn't matter". If no-one has ever listened, how do we know?
I ask to join in, saying that there are an awful lot of autistic people, and our voices count too.
For example, some 10% of LGBT+ people are autistic. Are we represented at the Shared Conversations on CofE LGBT matters? No-one knows. No-one has asked, it seems. Maybe we are, maybe we're not. Who can tell.
And normally there's someone who says, "Why should autistic people get a special mention? If you get a place, what about me? After all, I have diabetes, so why don't we have a special number of places for diabetic people? Or people who enjoy going to the theatre? We can't cater for every group, as it's just ridiculous".
Is it? It betrays an extraordinary lack of knowledge of autism. And of God, I'd argue.
Autistic people encounter God and faith differently. We have a different sensory system. We see differently. We hear differently. We are affected by texture, smell and physical contact differently. We process words differently. We see people differently (often being faceblind for example, and not able to recognise folk from their faces alone). We are rule-driven, not social-relationship-driven, and that means that our reading of the Bible is different. We socialise differently. We form relationships differently. Not in 'broken ways', but ways that represent something new, something amazing to learn about. Truly amazing.
What of God is represented in what we encounter? What of His word can we learn anew by listening to our 'take' on the Bible?
How does the word of Scripture sound to autistic lesbian ears?
How do faith images impact on eyes that see colour and texture differently?
What is it like to live with multiple disadvantages, from birth - in church life?
Is 10% of a group 'too small' to think about including?
What do we lose by not asking, by not including?
It's tempting to see autistic people as just asking to be included in order to make a point. In order to be a nuisance. As some annoying group asking to be 'catered for'. But it's not that.
It's about having something so worthwhile to contribute. It's about us hearing something really important about how we fail to see really big groups of people (some 300,000 of us in the country who are autistic and LGBT). It's about who has the right to decide things for us, without asking us or consulting with us. It's about who gets to impose pain and fear on us, quite accidentally, because they failed to ask our needs too.
No, it's not like leaving out people who are keen on hockey, or those who prefer the 8am service to the 10am service. It's about a group of people who are routinely bullied, excluded, assaulted, marginalised, forgotten and mostly live in abject poverty. And about a church that needs to do better than, "Well, your voice doesn't matter". If no-one has ever listened, how do we know?
Saturday, 11 July 2015
Othering
It's sometimes tough stuff, trying to encourage churches to welcome all.
Some churches are fabulous. Their leaders are enthusiastic about learning. They enable their teams to get good training. They fundraise and allocate budgets to ensure that everyone can get to a service and feel valued. We know that such churches see their congregations...and finances...increase year after year. I am fortunate to have found several like this. But some others...well...
I want to talk about feeling valued. What it is. What it is not. And about the 'othering' of people like me. Born autistic. Autism is a sensory processing and social communication disability, nothing to do with 'bad behaviour'.
So often, disabled people or those who live with differences are tolerated.
'Tolerate' is what you do when you let someone sit next to you... whilst you feel uncomfortable and hope they sit somewhere else....but you smile at them in a false way. The thinking behind this is, "I am such a good Christian for allowing you near me. After all, someone like you being in my church spoils my experience of God. You should be thankful to be allowed here". Had that happen a few times.
Now, the strange thing is that if it was done to them, other folk would immediately see that as intolerance. As prejudice. As falseness. As fear or hate. But it's something that folk like me are often expected to be grateful for. I think not.
Sometimes disabled folk and others who live with differences are the subject of 'awareness raising'. This means that we get to stand up in front of everyone and explain all the things we cannot do. All the things that make us feel really small and really bad about ourselves. And then, people are 'inspired' by us. "You brave person, coming to church!" "Wow, people like you can talk!" "So do you live in a residential home? Is that your carer with you?" I've had it all over the years. We are not friends. We are not colleagues. We are not equal. We are exhibits.
Now, the strange thing is that if this was done to them, other folk would feel really uncomfortable. But it's something that folk like me are expected to be grateful for. After all, we're talking about autism now, aren't we. Yes, yes we are. In a way that demeans and uses me, and has no regard for the after-effects. Often I'm expected to do this for free. As if it is a special treat for me to be allowed to talk to church people about embarrassing things and then go home feeling bad. That's not brilliant.
Yes, people like me offer training to the outside world. Training where we knowingly do stand up in front of many others and explain our 'deficits'. Our difficulties. Training where we are an example to be assessed, a thing to be stared at. And after each session, we go home to our families and friends and partners and children...and try to restore our sense of self-worth. Important stuff, awareness-raising. But it's nothing to do with valuing us.
What does valuing us look like? What does it feel like? What does it sound like?
It feels like we are seen as people, as colleagues, as friends. It feels like people want us to sit next to them. It feels like we're offered the same chances as others to show our strengths. It feels like we are enabled to feel safe and supported, of course - but in consensual ways that ask us. In quiet, invisible, respectful ways. Training like that happens in many places, and it's always a joy to work with such groups.
It doesn't look at us as a cost burden. As a time-waste. As a 'danger' (frankly we are no more likely to be dangerous than you are). It doesn't think that Church happens 'elsewhere' for us. There are no churches for autistic people. None. It's like a thing where Jesus got his team to hand round food to the 5000 and left all the autistic ones hungry and thirsty. Do you think that's what happened? Me neither.
We are God's loved children too. Valuing us doesn't allocate the budget and team and support to everyone but us... and then claim no money, no spare time. It doesn't involve ignoring bullying of us, or blaming us for the bullying. It doesn't involve laughing at us or using us as some sort of freak show. Or encouraging others not to help us. Or encouraging others not to talk to us, by pretending we are a nuisance. We're not exhibits or dangers. Truly we are not.
We are your friends. We love Jesus and are Christians who want to share our love and care with others, just like you do. We have families, just like you do. We have passionate interests, just like you do. The church should not get to pretend that we are 'other'. Not in front of God we're not.
It's our church too. It belongs to God, and God says yes. That's a reality that every church already has to come to terms with. Plenty of us are willing to help. But know the cost, please. And value the time and exhaustion and despair that it causes, especially when so often the response is 'go away', a budget-withholding, silence-enduring, "We don't want your sort here".
You are loved. We are not your enemy. Learn about our gifts to the church and to God. Value us for who we are, God's children, made in God's image.
Some churches are fabulous. Their leaders are enthusiastic about learning. They enable their teams to get good training. They fundraise and allocate budgets to ensure that everyone can get to a service and feel valued. We know that such churches see their congregations...and finances...increase year after year. I am fortunate to have found several like this. But some others...well...
I want to talk about feeling valued. What it is. What it is not. And about the 'othering' of people like me. Born autistic. Autism is a sensory processing and social communication disability, nothing to do with 'bad behaviour'.
So often, disabled people or those who live with differences are tolerated.
'Tolerate' is what you do when you let someone sit next to you... whilst you feel uncomfortable and hope they sit somewhere else....but you smile at them in a false way. The thinking behind this is, "I am such a good Christian for allowing you near me. After all, someone like you being in my church spoils my experience of God. You should be thankful to be allowed here". Had that happen a few times.
Now, the strange thing is that if it was done to them, other folk would immediately see that as intolerance. As prejudice. As falseness. As fear or hate. But it's something that folk like me are often expected to be grateful for. I think not.
Sometimes disabled folk and others who live with differences are the subject of 'awareness raising'. This means that we get to stand up in front of everyone and explain all the things we cannot do. All the things that make us feel really small and really bad about ourselves. And then, people are 'inspired' by us. "You brave person, coming to church!" "Wow, people like you can talk!" "So do you live in a residential home? Is that your carer with you?" I've had it all over the years. We are not friends. We are not colleagues. We are not equal. We are exhibits.
Now, the strange thing is that if this was done to them, other folk would feel really uncomfortable. But it's something that folk like me are expected to be grateful for. After all, we're talking about autism now, aren't we. Yes, yes we are. In a way that demeans and uses me, and has no regard for the after-effects. Often I'm expected to do this for free. As if it is a special treat for me to be allowed to talk to church people about embarrassing things and then go home feeling bad. That's not brilliant.
Yes, people like me offer training to the outside world. Training where we knowingly do stand up in front of many others and explain our 'deficits'. Our difficulties. Training where we are an example to be assessed, a thing to be stared at. And after each session, we go home to our families and friends and partners and children...and try to restore our sense of self-worth. Important stuff, awareness-raising. But it's nothing to do with valuing us.
What does valuing us look like? What does it feel like? What does it sound like?
It feels like we are seen as people, as colleagues, as friends. It feels like people want us to sit next to them. It feels like we're offered the same chances as others to show our strengths. It feels like we are enabled to feel safe and supported, of course - but in consensual ways that ask us. In quiet, invisible, respectful ways. Training like that happens in many places, and it's always a joy to work with such groups.
It doesn't look at us as a cost burden. As a time-waste. As a 'danger' (frankly we are no more likely to be dangerous than you are). It doesn't think that Church happens 'elsewhere' for us. There are no churches for autistic people. None. It's like a thing where Jesus got his team to hand round food to the 5000 and left all the autistic ones hungry and thirsty. Do you think that's what happened? Me neither.
We are God's loved children too. Valuing us doesn't allocate the budget and team and support to everyone but us... and then claim no money, no spare time. It doesn't involve ignoring bullying of us, or blaming us for the bullying. It doesn't involve laughing at us or using us as some sort of freak show. Or encouraging others not to help us. Or encouraging others not to talk to us, by pretending we are a nuisance. We're not exhibits or dangers. Truly we are not.
We are your friends. We love Jesus and are Christians who want to share our love and care with others, just like you do. We have families, just like you do. We have passionate interests, just like you do. The church should not get to pretend that we are 'other'. Not in front of God we're not.
It's our church too. It belongs to God, and God says yes. That's a reality that every church already has to come to terms with. Plenty of us are willing to help. But know the cost, please. And value the time and exhaustion and despair that it causes, especially when so often the response is 'go away', a budget-withholding, silence-enduring, "We don't want your sort here".
You are loved. We are not your enemy. Learn about our gifts to the church and to God. Value us for who we are, God's children, made in God's image.
Saturday, 20 June 2015
Three Sorts of Communication Systems - Autism, Sign Language, 'Normal'.
Learn Autism: One of an occasional series for surprised passers-by.
Sometimes, I find professionals and parents who are trying to 'fix' their autistic young person's social skills.
They will tell the young person that they are...
Not making enough eye contact
Not smiling appropriately
Not asking the right social questions
Not displaying an upright and alert body posture
Not taking turns in conversation
Not using the right body language
Flapping their hands or rocking inappropriately
Not staying at social events for long enough.
And they then try to 'fix' each one of these things. Various methods are sometimes used, including persuasion, blackmail, punishment, rewards, isolation, having sensory-and-routine-need items taken away.
OK. Let's stop right there.
Let's try another example. Suppose you have a new friend who is Deaf. They use sign language, and have done since birth.
You may notice straight away that they like to face you and stare right at you a lot.
You will notice that they move their hands a huge amount.
You may notice that they may lean towards you and away from you in exaggerated ways.
You will notice that they do not talk the same as you do.
You will notice that their movements are often exaggerated, as are their face expressions.
You and they use different communication systems, yes?
So...if you went up to a Deaf person and told them they were communicating all wrong, what do you think would happen?
Back to our autism example....
You see, we communicate differently. I'm going to generalise here. Our brains are wired to handle communication differently. We see people best out of the sides of our eyes, not straight ahead. Straight ahead is too 'loud'. Eye contact is so painful for most of us that we cannot do it, and also hear you, at the same time. It's overwhelming.
Social words are also much harder for us, so we minimise social wording and concentrate on vital accurate information. It's 'polite' in many autistic settings for us to miss out hello and goodbye to other autistic folk...and how are you, how is your family, etc. It saves overloading our communication systems.
When we encounter many non-autistic people, they communicate all wrong.
They make painful eye contact.
Their faces make strange expressions. Their eyebrows wiggle up and down.
They wave their own arms about and hands about, randomly.
They ask bizarre questions like, "how are you" and you're not allowed to say how you are, because the 'rule' is that you say you are OK.
They can talk for hours and hours about absolutely nothing specific at all. This would cause our brain to literally overheat and (in a good few cases) eventually electrocute itself, which we dread.
They use language that is filled with mysteries, like 'pull your socks up'. Mine are pulled right up, thanks.
They do language all wrong, you see. They need to be trained with proper social skills....for autism. Or do they? Do we? What about our Deaf friend?
So....what we have is three different communication systems in this example.
Most people use non-autistic social word communication.
Some use sign language.
Some use autism protocols.
Some use other methods.
They are not broken versions of one anothers' 'language'. They are different, for different people, for good reasons.
We don't need to fix one another. We mostly need to learn to understand one another, and cherish each person's unique way of communicating and loving us.
Sometimes, I find professionals and parents who are trying to 'fix' their autistic young person's social skills.
They will tell the young person that they are...
Not making enough eye contact
Not smiling appropriately
Not asking the right social questions
Not displaying an upright and alert body posture
Not taking turns in conversation
Not using the right body language
Flapping their hands or rocking inappropriately
Not staying at social events for long enough.
And they then try to 'fix' each one of these things. Various methods are sometimes used, including persuasion, blackmail, punishment, rewards, isolation, having sensory-and-routine-need items taken away.
OK. Let's stop right there.
Let's try another example. Suppose you have a new friend who is Deaf. They use sign language, and have done since birth.
You may notice straight away that they like to face you and stare right at you a lot.
You will notice that they move their hands a huge amount.
You may notice that they may lean towards you and away from you in exaggerated ways.
You will notice that they do not talk the same as you do.
You will notice that their movements are often exaggerated, as are their face expressions.
You and they use different communication systems, yes?
So...if you went up to a Deaf person and told them they were communicating all wrong, what do you think would happen?
Back to our autism example....
You see, we communicate differently. I'm going to generalise here. Our brains are wired to handle communication differently. We see people best out of the sides of our eyes, not straight ahead. Straight ahead is too 'loud'. Eye contact is so painful for most of us that we cannot do it, and also hear you, at the same time. It's overwhelming.
Social words are also much harder for us, so we minimise social wording and concentrate on vital accurate information. It's 'polite' in many autistic settings for us to miss out hello and goodbye to other autistic folk...and how are you, how is your family, etc. It saves overloading our communication systems.
When we encounter many non-autistic people, they communicate all wrong.
They make painful eye contact.
Their faces make strange expressions. Their eyebrows wiggle up and down.
They wave their own arms about and hands about, randomly.
They ask bizarre questions like, "how are you" and you're not allowed to say how you are, because the 'rule' is that you say you are OK.
They can talk for hours and hours about absolutely nothing specific at all. This would cause our brain to literally overheat and (in a good few cases) eventually electrocute itself, which we dread.
They use language that is filled with mysteries, like 'pull your socks up'. Mine are pulled right up, thanks.
They do language all wrong, you see. They need to be trained with proper social skills....for autism. Or do they? Do we? What about our Deaf friend?
So....what we have is three different communication systems in this example.
Most people use non-autistic social word communication.
Some use sign language.
Some use autism protocols.
Some use other methods.
They are not broken versions of one anothers' 'language'. They are different, for different people, for good reasons.
We don't need to fix one another. We mostly need to learn to understand one another, and cherish each person's unique way of communicating and loving us.
Wednesday, 10 June 2015
Autism and Hospital Visits
They are a sensory, social and routine-needs nightmare for autistic people of any age.
Find out who in your hospital is responsible for disability access. Talk it through with them.
Building trust in the hospital and its staff is so very important.
A good resource can be found at http://www.autism.org.uk/living-with-autism/out-and-about/my-hospital-passport.aspx
This is via the National Autistic Society. The form lets people write about their particular autism needs. It can then be handed to hospital staff to tell them those needs.
Above are two pictures. The one on the left shows a hospital medical room, probably as most people would see it. The picture on the right shows the intense colours and patterns that I would see. This is what happens to my vision, when I'm stressed and under fluorescent lighting. The lighting also flickers really badly, so it's like a strobe effect.
I know there are going to be intense noises from the equipment, and echoing corridors outside. I know there are going to be intense smells from disinfectants and other medical stuff.
I also have no idea where I will be waiting...probably under fluorescent lighting....or for how long.
All the time I'm waiting, my brain is getting more and more exhausted. Sooner or later, the pain/overload builds up inside the brain wiring. Quite literally. And then I am almost unable to communicate at all. The world becomes very scary indeed. I will then only give short standard answers, not accurate ones. Anything to get out of that room and away from the pain.
Hospitals don't often keep to appointment times. Instructions and signage is often vague or misleading to really literal thinkers. And staff assume that we 'just know' what they mean. Often instructions are in complex language, heard against a background of other voices. It becomes one huge noise. It can help to have a picture of what will happen, not just words. Do ask.
No wonder we get scared. That's before someone starts prodding us, injecting us, examining us...with all the sensory difficulties there too.
It helps to have a known appointment. First appointment of the day is good. If there is a delay, please tell us. And tell us where we can go to wait quietly away from others.
It helps to do a pre-visit, at that time of day, to test-drive how to get there, where to go, what the waiting room is like, what the loos are like, what the consultant's room is like. Hospitals may be able to arrange that.
It helps to have a quiet space to wait in - or be allowed to wait outside, and be called in by mobile phone etc.
It helps to have that 'hospital passport' ready, and for teams to deal quietly and calmly with me, taking their time to explain. Checking for understanding.
And explaining really carefully what physical things they will do.
If I need to stop for a while, is that possible?
Can I take a friend or relative in with me? A calm quiet person at my side can help a lot.
How do I say 'stop' when I really have had enough - and will that be respected?
Can I take in something for comfort, like a favourite game or item?
Working through all of this gives many of us confidence that autism is being taken seriously. We truly do have brains that take in too much sensory and social information at once. They really do overheat inside. We need to be able to guess how much we can handle at once. So accurate information is very important indeed.
Too many autistic people cannot access healthcare at the moment. It's as daunting as a wheelchair user finding that everything is up five flights of stairs. Working as a team with the hospital makes the impossible possible, and it's worth it..
Saturday, 6 June 2015
Autism - Social Clumsiness not Nastiness
First, if you are able, get to a computer with sound. Switch it on and turn it up as loud as you can handle.
Second, watch this two minute film about an autistic boy entering a cafe.
Wow.
That's the world we live in, 24 hrs a day. A world so 'loud' that our brains are utterly overwhelmed by it. Autism means that our bodies take in too much information from the world around us. So much that we are deafened and blinded by it. So much that our brain wiring literally overheats... and often stops us talking clearly with others. Eventually, many of our brains will shut down all communication, to try to let the brain wiring cool off.
That's the world we live in, 24 hrs a day. A world so 'loud' that our brains are utterly overwhelmed by it. Autism means that our bodies take in too much information from the world around us. So much that we are deafened and blinded by it. So much that our brain wiring literally overheats... and often stops us talking clearly with others. Eventually, many of our brains will shut down all communication, to try to let the brain wiring cool off.
In the 'bad old days', those behaviours were believed to be deliberate nasty choices by us. It caused a whole set of myths. Various baffled psychological types would look over their spectacles... and declare that we were deliberately nasty sorts, who needed to be forced to go into restaurants and other such places. And those myths grew and grew, and spread and spread.
Thank goodness for modern science that has shown what our world is like. It's shown the bravery and courage of so many autistic people. The ones who want to be with you at your event. The ones who will go into that restaurant, or that busy street with you. The ones who will attempt to be your friend, amongst that degree of pain and fear.
We know that if our brain wiring overheats too much, it can feel like an electric shock. And afterwards, exhaustion. An increasing number of specialists strongly suspect that autism is linked to epilepsy. So it's been like someone going up to a friend having an epileptic seizure and accusing them of 'attention seeking'. Just totally wrong. A complete misunderstanding.
It's fear that drives us...fear of the pain of that sensory/social overload. And we have a brain that doesn't communicate very well with non-autistic folk. It's too literal. We believe what we're told. So we're often socially naive when with non-autistic people. We can't see your body language or face expression. Voice tone can be a mystery too. We wouldn't know if that waitress in the film was bored, or sad, or empathetic, or angry, or anything else. There is simply a person with a totally blank face,to us. We then have to guess her emotion and guess our response. If we get it wrong, yikes, often people get so angry with us. Many, like me, can't even recognise who's who from their faces. The picture below shows what that looks like, to me. It shows a group of people with their faces blanked out.
Imagine being in that cafe, in that much distress, and then complete strangers get angry with you, too. We've done that to too many autistic folk. We've judged them against a standard that no-one else could possibly achieve either, if they had that brain design. The person needs to get to a quiet place for a while. They are genuinely afraid of the pain from the sensory/social overload.
If we're asking for help, it's not manipulation or laziness. It's not disruption or 'challenging'. If we have found a way to use words to ask, they might be clumsy. They might be 'annoying'. But it's a genuine ask. If we are distressed, it's no wonder. Let us get to quiet and safety.
If we're asking for help, it's not manipulation or laziness. It's not disruption or 'challenging'. If we have found a way to use words to ask, they might be clumsy. They might be 'annoying'. But it's a genuine ask. If we are distressed, it's no wonder. Let us get to quiet and safety.
Please don't judge us on the basis of the whisperers who tell you nonsense about autism. Or those who only know old myths. Find out for yourself. Get to know all the courageous, kind, responsible and caring autistic folk around you. We're most often lovely people, much misunderstood.
https://prezi.com/4qvptbyqpvfy/prosopagnosia/ is the photo credit
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