There is a huge organisation elsewhere in the world which alleges to act for autistic people.
It has a lot of very very wealthy donors, and thus a lot of cash.
With that cash, it buys the support of some top class 'spin doctors'.
Recently, one such 'spin doctor', a paid professional working in the autism-compliance-training field, wrote an article for a large online news provider.
In the article, they allege that only 1 in 30 of us females on the autism spectrum are at the 'higher functioning' end, and that the other 29 out of 30 are basically violent out of control nightmares who spend our days self-harming. Do we really? I looked around at my 50+ female autistic friends of all ages and abilities, and noted us going peacefully about everyday life. Most odd.
So, all very interesting. If only it were based on evidence. The statistic is the other way round.
The author then alleges that we use violence to get stuff. No, we don't. Autism is not a condition that causes manipulative violence. Violence is no part of the diagnostic list at all. Some autistic children have other co-occurring conditions that raise the likelihood of defiance. Occasionally some other conditions are misdiagnosed as autism, but are more aligned with antisocial behaviour. A small proportion of autistic people will have 'meltdowns' caused by an internal brain wiring 'epileptic incident', in which they are temporarily out of control. That behaviour is not designed to get something. Well, it may be designed to escape from intense pain and fear. That is not a bad thing, though. Most of us do not show any defiant or violent behaviour at all. So, where did that and the other strange statistics come from, one wonders.
The author also alleges that their own child is nothing like the sorts of children who perform on stage. Those aren't 'real autism', in other words. Their child is the typical sort of autism. In one of their articles about their child (who can read, write and talk), they apologise to teachers for having to endure their child and their appalling conduct. They talk in another about having to fear their child. So, we are left with the idea that this is a child who is not able to communicate, who is raging out of control night and day.
Except, in another article, they talk about their child starring in a play. Would this be the child who is nothing like the ones who perform on stage, then? Another article talks about the long conversations that the author and their child have about their games and computers.
There's more that concerns me about this 'expert'. Another of their articles says that autistic people can appear to communicate, but in fact we're not doing so. That's fascinating. Are we not? Really?
Spin only gets you so far. Sooner or later, people start querying the wild statistics and the non-matching facts.
If the media are hiring people who are paid by an organisation with a track history of abusive behaviour to autistic people, they will get that kind of article.
It is best to speak to professionals who are respectful. People who do not put their child in the media and speak about them in the most appalling ways. People with lived experience of autism, who can explain the realities instead of the myths.
It's really not OK to say dreadful things about your child in public. That fine young man will soon find those articles...and goodness me, whatever will they think about themselves. And about that parent for saying that, in front of the world.
Parents, please question articles you read which demonise autism. Ones which try to convince you that unless you part with a huge sum of money for intensive therapy, your child will be a dribbling mess in a corner, for life.
I didn't speak in any conventional way until I was ten. I rocked in a corner and would sit and spin the wheels of toy cars for hours. I now run a national Professional Practice. I had no expensive training or therapy at all. Nor did my own son, who is autistic (not Aspergers). The most amazing and fantastic young man. I could not be more proud of who he is and what he has achieved in his life. In fact, none of the autistic people with whom I share life have had expensive therapies. We'd love a world with a sensory environment that didn't hurt, though. And people who treated us with respect and love, giving us accurate information and timescales, so we can feel safe and confident.
For all our fine young people, let us find ways to look at truth, not spin.
Sunday, 27 September 2015
Friday, 25 September 2015
Autistic Law Abiding and the Media
Today has seen another flurry of news reports about autism. Unfortunately, they have been about a young man who has a very specific severe mental health situation which leads him to want to kill people...and who has tried to do exactly that in the past. He also has learning difficulties. He also has a low IQ. He is also autistic. He is on trial for an incident that led to the death of a young woman.
As ever, the only thing most of the media have focused on is the autism.
Please, media, you are lovely and dedicated people, and I know you want a good story. But autism has no known link to crime....other than two things:
a) Some criminals soon realise that some autistic people may be very naïve...and fool a few of our young autistic folk into doing silly or criminal things. For example convincing a young autistic person to deliver some 'packages' and collect money...and then the young person finds out it's drugs in the packages. It never occurred to them that this was a set-up. Lack of social understanding. We're doing very good work with the Police and the Courts to get better understanding of this.
b) Autistic people are nearly all victims of crime. We know for example that 30% of autistic women report that they have been raped. 80% report bullying. 70% report sexual victimisation generally. Huge numbers are victims of other general violence and fraud, too.
We know that there are some 550 murders in the UK every year. If 549 of those are by people who are not autistic, would a headline be, "549 non-autistic people are killers - be afraid of non-autistic people!". Indeed not.
But if one of them happens to also be autistic, that's often the focus. And it's also the difficulty.
The thing is, it makes our lives so much worse. We're already so often misunderstood. We're already battling a system that wants to find fault with all we are. Autism is a sensory processing difference and a need for routine. It's not a criminal condition. It's no more relevant to criminal intent than the size of the person's feet. It makes it more difficult for us to find friends. It makes it more difficult for us to be employed. It makes it more difficult for us to be trusted to help with charities and neighbourhood groups. People become afraid of us for no good reason. Such a sad thing for everyone.
So, lovely media folk, please can we ask that you be careful about the ways in which you are reporting things around autism? Get to know us. Most of us are wonderful, socially-responsible people who work very hard in society. We work on getting better laws, on safeguarding, on improving care and education. We're as responsible as anyone else is likely to be, as a group.
Get to know us, and help us to really make the country safer and better informed.
As ever, the only thing most of the media have focused on is the autism.
Please, media, you are lovely and dedicated people, and I know you want a good story. But autism has no known link to crime....other than two things:
a) Some criminals soon realise that some autistic people may be very naïve...and fool a few of our young autistic folk into doing silly or criminal things. For example convincing a young autistic person to deliver some 'packages' and collect money...and then the young person finds out it's drugs in the packages. It never occurred to them that this was a set-up. Lack of social understanding. We're doing very good work with the Police and the Courts to get better understanding of this.
b) Autistic people are nearly all victims of crime. We know for example that 30% of autistic women report that they have been raped. 80% report bullying. 70% report sexual victimisation generally. Huge numbers are victims of other general violence and fraud, too.
We know that there are some 550 murders in the UK every year. If 549 of those are by people who are not autistic, would a headline be, "549 non-autistic people are killers - be afraid of non-autistic people!". Indeed not.
But if one of them happens to also be autistic, that's often the focus. And it's also the difficulty.
The thing is, it makes our lives so much worse. We're already so often misunderstood. We're already battling a system that wants to find fault with all we are. Autism is a sensory processing difference and a need for routine. It's not a criminal condition. It's no more relevant to criminal intent than the size of the person's feet. It makes it more difficult for us to find friends. It makes it more difficult for us to be employed. It makes it more difficult for us to be trusted to help with charities and neighbourhood groups. People become afraid of us for no good reason. Such a sad thing for everyone.
So, lovely media folk, please can we ask that you be careful about the ways in which you are reporting things around autism? Get to know us. Most of us are wonderful, socially-responsible people who work very hard in society. We work on getting better laws, on safeguarding, on improving care and education. We're as responsible as anyone else is likely to be, as a group.
Get to know us, and help us to really make the country safer and better informed.
Thursday, 24 September 2015
Autistic Faith and God
Before I knew that people were people, I knew that God existed, and that I was loved by Him.
As a child, I was functionally non-verbal for some years. I could repeat phrases and sentences, or individual words - but I had no idea what any of it was for. My speech either wouldn't happen at all, or I would speak slowly and clumsily. Even now, speech can abandon me when I am in 'shutdown'.
As one of the visual-thinker autistic folk, I think in pictures, not words. Words have no meaning at all in my brain, even now. Or on paper. All the time, I'm imagining what something looks like, or does.
I learned about God and Jesus from pictures. From texture. From warmth. From touch. From scents. From pattern. I still do.
With senses that take in vast detail from the world around me, mine is a world experienced as intensity and beauty. As breathtaking marvel.
I find God, and joy, in things large and small. An endless sky. The peaceful sleeping of a newborn baby. In the beauty of stained glass and choral music. In the companionship of friends. In a carved stone, given with love by a dear friend. Especially that stone. The coolness, living in a world with a brain that wants to run 'too hot'. The smoothness, in a world that so often feel painful to the touch. The message of hope written upon it. And the significance of the friendship. All bound up in that link to God. He who made heaven and earth. The dust from which we are made...which also makes that very stone.
So easy to think, "Oh look, some autistic person who is focussed on a pebble - bless 'em".
Our spirituality isn't easily said in words. But it so often runs deep. Deeper than the deepest ocean.
Ours is not a pale shadow of 'real' faith, 'real' love, 'real' gift to God. It is something marvellous. Something extraordinary. Something to explore, and learn of, and cherish as fellow travellers on the path that Jesus set for us. Our gifts in sharing God's love with others? Those are not a broken version of 'real pastoral skills'.
The times in my life when I have felt alone? It's often been autistic people-of-faith (whether Christian or Jewish or Muslim or Buddhist or others) who have been there for me. Offering love, and listening, and caring. Not once have they grown tired and walked away. Not once have they judged me and condemned me. Not once have they shoved burdens onto me to make themselves feel better. A lifetime of life in and amongst autistic folk of every kind, whether verbal or not. As companions, colleagues, friends, faith leaders. It has been a shame that, during the worst of times, it's often been those of other faiths who have wanted to see my humanity...and a few of those of my own faith who have lined up with condemnation. "People like you are a danger to others....people like you have no souls....people like you can't be real Christians...people like you are evil...people like you are self centred, lack empathy, can't be trusted...I'd never be alone with someone like you - think of the risk I'd be taking". Goodness me, imagine if this was the narrative of your faith and humanity, taught to you by some others of that faith. Just imagine. I am grateful to Christian friends who have tried hard to undo the damage of others in our own faith. Many Christians are lovely folk. I am not for one moment saying that all are bad. But I am relating a narrative that has been there my whole life, in our churches, from some. A narrative that I and so many others want to help change, for the better.
That we live in a society where some so desperately wants to see us as broken, damaged, in need of fixing, sure to fail? Some desperately want that to be true. So desperately that they will do anything to prove they're right. It's then like taking a dazzling, musical, rainbow-hued bird of paradise from the trees, holding it under water, and saying, "There, see how it struggles and fights - told you they were dangerous/ useless/ unsuited to God's purpose - look, no singing at all!". No, really, it is like that. A lifetime of some people trying to 'drown' us to prove something untrue? Putting us into situations where of course we're going to fail...and never once enabling us to succeed...using just such simple cost-free adaptations? No wonder we are tired. No wonder some are damaged by it. What have we thrown away through such thinking?
Go find an autistic person of faith. Talk about that faith, as friends. Instead of thinking you are teaching us, listen. Watch. Learn. Look beyond words, to art, and movement, to sound and pattern. To our music and our stillness, our patience and our honesty. To these and so many other wonderful things. You will find a wisdom. And friendship. And faithfulness. Things new and amazing. And you will find someone dearly beloved of God, right there, before you.
As a child, I was functionally non-verbal for some years. I could repeat phrases and sentences, or individual words - but I had no idea what any of it was for. My speech either wouldn't happen at all, or I would speak slowly and clumsily. Even now, speech can abandon me when I am in 'shutdown'.
As one of the visual-thinker autistic folk, I think in pictures, not words. Words have no meaning at all in my brain, even now. Or on paper. All the time, I'm imagining what something looks like, or does.
I learned about God and Jesus from pictures. From texture. From warmth. From touch. From scents. From pattern. I still do.
With senses that take in vast detail from the world around me, mine is a world experienced as intensity and beauty. As breathtaking marvel.
I find God, and joy, in things large and small. An endless sky. The peaceful sleeping of a newborn baby. In the beauty of stained glass and choral music. In the companionship of friends. In a carved stone, given with love by a dear friend. Especially that stone. The coolness, living in a world with a brain that wants to run 'too hot'. The smoothness, in a world that so often feel painful to the touch. The message of hope written upon it. And the significance of the friendship. All bound up in that link to God. He who made heaven and earth. The dust from which we are made...which also makes that very stone.
So easy to think, "Oh look, some autistic person who is focussed on a pebble - bless 'em".
Our spirituality isn't easily said in words. But it so often runs deep. Deeper than the deepest ocean.
Ours is not a pale shadow of 'real' faith, 'real' love, 'real' gift to God. It is something marvellous. Something extraordinary. Something to explore, and learn of, and cherish as fellow travellers on the path that Jesus set for us. Our gifts in sharing God's love with others? Those are not a broken version of 'real pastoral skills'.
The times in my life when I have felt alone? It's often been autistic people-of-faith (whether Christian or Jewish or Muslim or Buddhist or others) who have been there for me. Offering love, and listening, and caring. Not once have they grown tired and walked away. Not once have they judged me and condemned me. Not once have they shoved burdens onto me to make themselves feel better. A lifetime of life in and amongst autistic folk of every kind, whether verbal or not. As companions, colleagues, friends, faith leaders. It has been a shame that, during the worst of times, it's often been those of other faiths who have wanted to see my humanity...and a few of those of my own faith who have lined up with condemnation. "People like you are a danger to others....people like you have no souls....people like you can't be real Christians...people like you are evil...people like you are self centred, lack empathy, can't be trusted...I'd never be alone with someone like you - think of the risk I'd be taking". Goodness me, imagine if this was the narrative of your faith and humanity, taught to you by some others of that faith. Just imagine. I am grateful to Christian friends who have tried hard to undo the damage of others in our own faith. Many Christians are lovely folk. I am not for one moment saying that all are bad. But I am relating a narrative that has been there my whole life, in our churches, from some. A narrative that I and so many others want to help change, for the better.
That we live in a society where some so desperately wants to see us as broken, damaged, in need of fixing, sure to fail? Some desperately want that to be true. So desperately that they will do anything to prove they're right. It's then like taking a dazzling, musical, rainbow-hued bird of paradise from the trees, holding it under water, and saying, "There, see how it struggles and fights - told you they were dangerous/ useless/ unsuited to God's purpose - look, no singing at all!". No, really, it is like that. A lifetime of some people trying to 'drown' us to prove something untrue? Putting us into situations where of course we're going to fail...and never once enabling us to succeed...using just such simple cost-free adaptations? No wonder we are tired. No wonder some are damaged by it. What have we thrown away through such thinking?
Go find an autistic person of faith. Talk about that faith, as friends. Instead of thinking you are teaching us, listen. Watch. Learn. Look beyond words, to art, and movement, to sound and pattern. To our music and our stillness, our patience and our honesty. To these and so many other wonderful things. You will find a wisdom. And friendship. And faithfulness. Things new and amazing. And you will find someone dearly beloved of God, right there, before you.
Monday, 21 September 2015
How To Pick Autistic Clergy
First of all, let's get in the right mindset for this.
Do you have any friends or relatives who are diabetic? Are there, do you think, any Clergy who are diabetic? Would diabetes stop someone from being an effective Priest?
I'm guessing you're agreeing that it wouldn't.
Diabetes means there is a risk of blood sugar levels being out of control for a while. During such a time, a person may act 'out of character' until they solve it with sugar/injections/whatever they need. Does this make them a bad person? No, it does not.
Suppose there's a person who is diabetic and also a sociopath. Are all diabetic people sociopaths? No.
OK, let's look at autism. Autism is where the brain is so highly tuned for detail that there is a risk of it overheating temporarily from time to time. Quite literally, too hot inside. And when that happens, the person may act out of character for a short while until they solve it with a rest break somewhere quiet. That lets the wiring literally cool down to operating temperature again. Most balance their brain input so carefully that you'll never see it happen. Does this make them a bad person, if it does happen occasionally? No, it does not. It is a physical brain wiring difference, not a disease or a lack of empathy.
Suppose there is an autistic person who is also a nasty individual. Are all autistic people nasty? No.
Hopefully that's been a useful exercise in how to think about autism. It's just a brain design difference. We're lovely people, the vast majority of us.
Autistic people get to be their own expert on avoiding brain wiring overheating. We work very hard all day long to think ahead. Thinking about our sensory environment. Thinking about social overload too. And how to rest enough before and afterward a big event. We already know our limits. We've lived with them our whole lives.
We have autistic clergy aplenty, from the million autistic people in the UK. Yes, even one or two Bishops and Archdeacons. All doing a fine job, managing people, applying pastoral excellence, running committees, organising diaries, and being superb theologians and all else.
And for some reason, we as a church often pretend that we don't have any. Which means most of our autistic clergy are hiding, worried that someone is going to say, "Aha - you have none of the skills we need (even if you've done the job brilliantly for years!) Be gone!". Well, it has happened. Unfortunately.
Now the thing is, autistic folk also cannot see people too well, nor see their body language too well. Surely that is a deficit, you say? Well, no. Instead, we use other senses to detect what we cannot see. Another of our top tips is to ask really good questions and to listen really intently. We can pick up a huge amount that others cannot - but often need a little bit of thinking time. Not worse, just different.
If you are picking out who's going to be superb Priest, you need to be aware of autism differences. You need to be clear that things like eye contact and face expression are not 'readable' from us. Any more than they would be if a potential Priest was visually impaired. Would we decide that people with some visual impairment can't be Priests? What of Paul the Apostle, then?
You need to understand that we give literal, honest answers to literal, honest questions. We're unbothered by making others think we're marvellous. That's not a lack of ambition or a lack of talent. 'Selling ourselves' is something we don't do. We're practical folk. A good interviewer or DDO will ask good questions, and allow time for good answers - not only during an interview, but afterwards. They will ask people who understand about autism. They will take good advice on autism. They will look at what the person can do. Quite often, those feeling a Calling from God will turn out to have the most extraordinary skill set. I've known autistic clergy with photographic memories of every verse in the Bible and Lectionary. Ones who have extraordinary musical talents. Ones who have a true gift with working with the young, or old, or more vulnerable groups. Ask for a portfolio of experience. Do a few visits to see them in action. Just sitting in a room and doing an interview? That will reveal nothing. It's the wrong thing. It's not a disability-adjusted way of doing it. Asking a clueless clergyperson in the community what they think of someone who is autistic? It's more likely to reveal prejudice than a useful answer. If fellow clergy have no training in autism, they can misread it as a whole list of negative stuff. Or arrive with a whole set of myths from the ancient past, where autism was entirely misunderstood.
And if there is to be good or bad news ahead, be really clear about when that is going to be delivered. And how. And who will be there for that person, at the time and afterwards, to listen and support them. Never, ever deliver bad news unfairly AND unexpectedly on an autistic individual, and then just show them out of the door, with no support in place. Again, take good advice from your autism advisers on what to say and when, and how. Yes, Priests have to deal with a lot of the unexpected. But the most devastating news of all is arguably to tell someone autistic who has a calling from God that they are mistaken about it. That they have imagined it. That their way of accessing spirituality is 'wrong'. That they have nothing to offer God other than vague stuff anyone else could do.
Autistic people are amongst the most spiritual, and most dedicated Christians I know. The level of care, love, dedication and passion for this faith is beyond measure. If a post is not right for us, we will need to know what we can do about that. We will know to know a next step, an alternative, a way forward. Arguably, so does everyone else. But, for us, 'what next' is so important. Right away, not days later.
Our dedication in getting to that point of asking to serve God, to let His love and presence be glimpsed through the lens of autism? That has already taken breathtaking courage....endless dedication....unending hope. And sheer love.
It is never something we enter into lightly, unaware of the challenges we face. Really, really listen. Really explore. Because what you have there is what Jesus found in his friend Nicodemus. Someone who was baffled by the occasional verbal expression, but was there for him 'through hell and high water'...and there for him at the tomb at the very end...when so many had fled. I'd want that friend, the same as Jesus did. Find out why.
Me, I'd not volunteer for the job, ever. I don't have the skill set. I can run a company and lead worship and steer charities to great success....but my own skill set is not that of a Priest. I know this, and wouldn't dream of trying to do a job I cannot do. Others of my autistic clergy colleagues - goodness me, they have been God's voice and hands to me. His love shines through them so very very clearly, and I speak with so many who are thrilled that they serve Him. Don't judge our disability. Judge us, as individuals. Fairly, and respectfully, and carefully.
Do you have any friends or relatives who are diabetic? Are there, do you think, any Clergy who are diabetic? Would diabetes stop someone from being an effective Priest?
I'm guessing you're agreeing that it wouldn't.
Diabetes means there is a risk of blood sugar levels being out of control for a while. During such a time, a person may act 'out of character' until they solve it with sugar/injections/whatever they need. Does this make them a bad person? No, it does not.
Suppose there's a person who is diabetic and also a sociopath. Are all diabetic people sociopaths? No.
OK, let's look at autism. Autism is where the brain is so highly tuned for detail that there is a risk of it overheating temporarily from time to time. Quite literally, too hot inside. And when that happens, the person may act out of character for a short while until they solve it with a rest break somewhere quiet. That lets the wiring literally cool down to operating temperature again. Most balance their brain input so carefully that you'll never see it happen. Does this make them a bad person, if it does happen occasionally? No, it does not. It is a physical brain wiring difference, not a disease or a lack of empathy.
Suppose there is an autistic person who is also a nasty individual. Are all autistic people nasty? No.
Hopefully that's been a useful exercise in how to think about autism. It's just a brain design difference. We're lovely people, the vast majority of us.
Autistic people get to be their own expert on avoiding brain wiring overheating. We work very hard all day long to think ahead. Thinking about our sensory environment. Thinking about social overload too. And how to rest enough before and afterward a big event. We already know our limits. We've lived with them our whole lives.
We have autistic clergy aplenty, from the million autistic people in the UK. Yes, even one or two Bishops and Archdeacons. All doing a fine job, managing people, applying pastoral excellence, running committees, organising diaries, and being superb theologians and all else.
And for some reason, we as a church often pretend that we don't have any. Which means most of our autistic clergy are hiding, worried that someone is going to say, "Aha - you have none of the skills we need (even if you've done the job brilliantly for years!) Be gone!". Well, it has happened. Unfortunately.
Now the thing is, autistic folk also cannot see people too well, nor see their body language too well. Surely that is a deficit, you say? Well, no. Instead, we use other senses to detect what we cannot see. Another of our top tips is to ask really good questions and to listen really intently. We can pick up a huge amount that others cannot - but often need a little bit of thinking time. Not worse, just different.
If you are picking out who's going to be superb Priest, you need to be aware of autism differences. You need to be clear that things like eye contact and face expression are not 'readable' from us. Any more than they would be if a potential Priest was visually impaired. Would we decide that people with some visual impairment can't be Priests? What of Paul the Apostle, then?
You need to understand that we give literal, honest answers to literal, honest questions. We're unbothered by making others think we're marvellous. That's not a lack of ambition or a lack of talent. 'Selling ourselves' is something we don't do. We're practical folk. A good interviewer or DDO will ask good questions, and allow time for good answers - not only during an interview, but afterwards. They will ask people who understand about autism. They will take good advice on autism. They will look at what the person can do. Quite often, those feeling a Calling from God will turn out to have the most extraordinary skill set. I've known autistic clergy with photographic memories of every verse in the Bible and Lectionary. Ones who have extraordinary musical talents. Ones who have a true gift with working with the young, or old, or more vulnerable groups. Ask for a portfolio of experience. Do a few visits to see them in action. Just sitting in a room and doing an interview? That will reveal nothing. It's the wrong thing. It's not a disability-adjusted way of doing it. Asking a clueless clergyperson in the community what they think of someone who is autistic? It's more likely to reveal prejudice than a useful answer. If fellow clergy have no training in autism, they can misread it as a whole list of negative stuff. Or arrive with a whole set of myths from the ancient past, where autism was entirely misunderstood.
And if there is to be good or bad news ahead, be really clear about when that is going to be delivered. And how. And who will be there for that person, at the time and afterwards, to listen and support them. Never, ever deliver bad news unfairly AND unexpectedly on an autistic individual, and then just show them out of the door, with no support in place. Again, take good advice from your autism advisers on what to say and when, and how. Yes, Priests have to deal with a lot of the unexpected. But the most devastating news of all is arguably to tell someone autistic who has a calling from God that they are mistaken about it. That they have imagined it. That their way of accessing spirituality is 'wrong'. That they have nothing to offer God other than vague stuff anyone else could do.
Autistic people are amongst the most spiritual, and most dedicated Christians I know. The level of care, love, dedication and passion for this faith is beyond measure. If a post is not right for us, we will need to know what we can do about that. We will know to know a next step, an alternative, a way forward. Arguably, so does everyone else. But, for us, 'what next' is so important. Right away, not days later.
Our dedication in getting to that point of asking to serve God, to let His love and presence be glimpsed through the lens of autism? That has already taken breathtaking courage....endless dedication....unending hope. And sheer love.
It is never something we enter into lightly, unaware of the challenges we face. Really, really listen. Really explore. Because what you have there is what Jesus found in his friend Nicodemus. Someone who was baffled by the occasional verbal expression, but was there for him 'through hell and high water'...and there for him at the tomb at the very end...when so many had fled. I'd want that friend, the same as Jesus did. Find out why.
Me, I'd not volunteer for the job, ever. I don't have the skill set. I can run a company and lead worship and steer charities to great success....but my own skill set is not that of a Priest. I know this, and wouldn't dream of trying to do a job I cannot do. Others of my autistic clergy colleagues - goodness me, they have been God's voice and hands to me. His love shines through them so very very clearly, and I speak with so many who are thrilled that they serve Him. Don't judge our disability. Judge us, as individuals. Fairly, and respectfully, and carefully.
Friday, 18 September 2015
'Vulnerable' does not mean incompetent
This is such an important one.
Anyone can be 'vulnerable'. Anyone at all. For example, if someone is a patient at a hospital, or in a dentist's chair, they count as 'vulnerable' during that time.
It is not true to say that if someone counts as 'vulnerable', they must be incompetent, a danger, someone who cannot be trusted. Well, not unless we have that view about every single person on the planet.
Vulnerability is about not being able to protect ourselves in particular situations. Some people who have a disability will be vulnerable in some situations. The term for it is often, "An adult who may be vulnerable".
Autism certainly does make us more vulnerable than usual to predators, for example. Not being able to see faces and expressions well is a huge disadvantage. And our social 'clumsiness' is a signal to predators that we could be an easy target.
But that vulnerability is nothing to do with our personal integrity, or our skill set.
I've seen some really appalling thinking from some individuals over the years. The sort of thinking that puts all people like me into the, "...oh that sort of person can't be trusted - they will always need supervising" thing. Or the, "Gosh, I'm alone with Ann - could I be sued for it?" nonsense. Well, it is.
No autistic person ever gained extra safety by ordinary everyday people being afraid of us, afraid of being with us, or denying us humanity and rights. That's not what safeguarding is for. That's not what the term 'vulnerable' means, or should lead to.
Vulnerability means an opportunity to respect an area of possible difficulty for that person.
It may mean a person who could have the most enormous talents and skills to bring to a situation, but who simply cannot see people very well. Or may have difficulty communicating in some situations. And we all do, as humans, don't we. With autism, those difficulties may be specific. That's the difference.
Watching out for predators targeting us? That's handy.
Making sure we are working within our area of skill and training? That's great.
Don't do the, "Gosh, they're all incompetent" thing. It's not true. At all.
Anyone can be 'vulnerable'. Anyone at all. For example, if someone is a patient at a hospital, or in a dentist's chair, they count as 'vulnerable' during that time.
It is not true to say that if someone counts as 'vulnerable', they must be incompetent, a danger, someone who cannot be trusted. Well, not unless we have that view about every single person on the planet.
Vulnerability is about not being able to protect ourselves in particular situations. Some people who have a disability will be vulnerable in some situations. The term for it is often, "An adult who may be vulnerable".
Autism certainly does make us more vulnerable than usual to predators, for example. Not being able to see faces and expressions well is a huge disadvantage. And our social 'clumsiness' is a signal to predators that we could be an easy target.
But that vulnerability is nothing to do with our personal integrity, or our skill set.
I've seen some really appalling thinking from some individuals over the years. The sort of thinking that puts all people like me into the, "...oh that sort of person can't be trusted - they will always need supervising" thing. Or the, "Gosh, I'm alone with Ann - could I be sued for it?" nonsense. Well, it is.
No autistic person ever gained extra safety by ordinary everyday people being afraid of us, afraid of being with us, or denying us humanity and rights. That's not what safeguarding is for. That's not what the term 'vulnerable' means, or should lead to.
Vulnerability means an opportunity to respect an area of possible difficulty for that person.
It may mean a person who could have the most enormous talents and skills to bring to a situation, but who simply cannot see people very well. Or may have difficulty communicating in some situations. And we all do, as humans, don't we. With autism, those difficulties may be specific. That's the difference.
Watching out for predators targeting us? That's handy.
Making sure we are working within our area of skill and training? That's great.
Don't do the, "Gosh, they're all incompetent" thing. It's not true. At all.
Monday, 14 September 2015
Autism Basics. When "I'll be back in five minutes" isn't true.
So many myths about autism. And quite a lot of really standard stuff was never public knowledge.
Giving us inaccurate information about timings?
I will generalise, because there will be exceptions . This is common to most of us, though.
For example, you tell an autistic person that you will be 'back in five minutes'. It's an expression, yes? It doesn't mean 'five minutes'. Except it does, to us. It means precisely five minutes. We are so literal. Even as adults. When it gets to 4 mins 50 seconds, it's very exciting, because you'll be back in ten seconds. When it gets to 5 mins, you will return. Except, what if you don't? Well, that's...er...a mystery, because you're not here. And then, the panic sets in. And builds, and builds, and builds.
It may seem like a psychological problem, or a 'controlling personality issue'. It's not. It is unfortunate that so many people got diverted into counselling and therapies incorrectly for this kind of thing.
All day, every day, we are balancing a brain whose wiring is connected up for fine detail, not social stuff. For repetition and total accuracy, not sensory overload. It is a real physical brain wiring difference.
Dealing with people? That takes anticipation about how to speak and what to say. About what body language and eye contact to try to interpret. About what voice tone to listen for. Lots of anticipation. We have to calculate days or hours in advance how much brain wiring overheat we can handle for a social situation that others take for granted. How long will ou will you be with us for? We do want to be with people, honest we do. But it's so hard to manage, with a brain that overheats in busy, noisy, social places. The more you are with us, making eye contact and expecting the correct social response? Well, that's huge work for our brain wiring. It heats up, and up , and up, until it causes very real pain. It then cuts out our ability to communicate well, and leaves us exhausted and dazed.
Also, we're possibly waiting in sensory hell for you. Probably under fluorescent lighting, in a busy, noisy space. Schools, shops, cafes, restaurants, workplaces. Waiting for that five minutes to be up. We've left enough 'calculation room' to handle five minutes of pain in that space. We can do that. Then, you don't show up. Now, we've no idea how much pain we will be in, or for how long.
No wonder we get anxious. So would you, if your brain did that.
Be accurate, or suitably vague. If you do not mean 'five minutes', please don't say it's five minutes. Say, "I will be back before..." (whatever time is the latest you can possibly imagine for this). Or "I will be back within 5-15 minutes". If that changes, let us know.
Being accurate may seem like a huge imposition. It's because you are not living with a brain that overheats/electrocutes you when left in difficult environments for too long. Or with impossible social situations to calculate for too long. Ours does.
Respect that it's a physical brain difference, not an attitude problem, and you'll find we are wonderful friends and colleagues to be with. We'll learn to trust what you say, and we can do really good calculations around how much input there will be.
So many meet people like me with no idea how much work we have to do to be friends and work colleagues with you. It's an honour and a joy to spend time with people. But it really helps when people know the basics.
Giving us inaccurate information about timings?
I will generalise, because there will be exceptions . This is common to most of us, though.
For example, you tell an autistic person that you will be 'back in five minutes'. It's an expression, yes? It doesn't mean 'five minutes'. Except it does, to us. It means precisely five minutes. We are so literal. Even as adults. When it gets to 4 mins 50 seconds, it's very exciting, because you'll be back in ten seconds. When it gets to 5 mins, you will return. Except, what if you don't? Well, that's...er...a mystery, because you're not here. And then, the panic sets in. And builds, and builds, and builds.
It may seem like a psychological problem, or a 'controlling personality issue'. It's not. It is unfortunate that so many people got diverted into counselling and therapies incorrectly for this kind of thing.
All day, every day, we are balancing a brain whose wiring is connected up for fine detail, not social stuff. For repetition and total accuracy, not sensory overload. It is a real physical brain wiring difference.
Dealing with people? That takes anticipation about how to speak and what to say. About what body language and eye contact to try to interpret. About what voice tone to listen for. Lots of anticipation. We have to calculate days or hours in advance how much brain wiring overheat we can handle for a social situation that others take for granted. How long will ou will you be with us for? We do want to be with people, honest we do. But it's so hard to manage, with a brain that overheats in busy, noisy, social places. The more you are with us, making eye contact and expecting the correct social response? Well, that's huge work for our brain wiring. It heats up, and up , and up, until it causes very real pain. It then cuts out our ability to communicate well, and leaves us exhausted and dazed.
Also, we're possibly waiting in sensory hell for you. Probably under fluorescent lighting, in a busy, noisy space. Schools, shops, cafes, restaurants, workplaces. Waiting for that five minutes to be up. We've left enough 'calculation room' to handle five minutes of pain in that space. We can do that. Then, you don't show up. Now, we've no idea how much pain we will be in, or for how long.
No wonder we get anxious. So would you, if your brain did that.
Be accurate, or suitably vague. If you do not mean 'five minutes', please don't say it's five minutes. Say, "I will be back before..." (whatever time is the latest you can possibly imagine for this). Or "I will be back within 5-15 minutes". If that changes, let us know.
Being accurate may seem like a huge imposition. It's because you are not living with a brain that overheats/electrocutes you when left in difficult environments for too long. Or with impossible social situations to calculate for too long. Ours does.
Respect that it's a physical brain difference, not an attitude problem, and you'll find we are wonderful friends and colleagues to be with. We'll learn to trust what you say, and we can do really good calculations around how much input there will be.
So many meet people like me with no idea how much work we have to do to be friends and work colleagues with you. It's an honour and a joy to spend time with people. But it really helps when people know the basics.
Saturday, 12 September 2015
Worth more than gold
It's a difficult one, worth, isn't it.
What's someone worth?
What's someone like me worth?
Autism has its wonderful naivety. If someone asked me what someone like you was worth, I'd say, "More than all the gold in all the world".
But if someone in some faith groups is asked what I'm worth, the answer often comes in at, "Well, not as much as £6" "£4 is too much, obviously" "Really she should be free, or be paying us for the inconvenience of enduring her and her disability needs".
As if we are just lumps of meat with no feelings. As if being given this message day after day would have no impact. Over a lifetime.
It's a difficult thing, standing up in front of a group of people as the real live example of 'not worth anything'. The days to prepare ourselves, and the time afterwards to recover. Explaining to people that I cannot even see who they are. Narrating the difficulties I have with everyday life. Talking about the way we are targeted through that naivety. Taking all the highly personal questions about my private life. Somewhere deep inside, we end up feeling dirty, and used, and worthless during the process of being the 'live exhibit'. As trainers, we fall out of training classes for some groups both delighted to have had the chance to change society....and exhausted and demoralised beyond measure. Because there are so few support mechanisms in place, we try to 'prop one another up'. Not many have the strength to keep getting up and doing the job.
But there's so often someone who pops up, brightly, to say how grateful I should be to have been allowed to even apply to do their work for less than my costs. I should say thank you nicely, they prompt. Where are my manners, eh.
There isn't anger behind my response. There is just a numb despair, and tears.
There isn't anger behind my response. There is just a numb despair, and tears.
We do it because we don't want a world of pain for our youngsters any more. I also do it because I believe God loves people like me, and values us. And this is the only way to get the starting point. The only way to get people to move past the 'they are not worth our cash' thinking. No-one autistic gets rich from doing autism training. Many of us give our time for only enough to feed ourselves the basics from one day to the next, if it makes a difference. Quite often, even that is 'too much', it seems. What are we worth?
You are worth more than all the gold in all the world. Yes, you.
And so, my question to you, is....what am I worth to you? And to God?
One big question to pray on, deeply, over time.
Monday, 7 September 2015
Non-Autistic Autism Experts: How to get it right...and wrong
The great thing about the last couple of years? Autistic experts are now equal leaders in autism work.
For decades, we were too often treated as lab specimens or patients by far too many non-autistic professionals. Not all did so. A good number have always been marvellous partners for us in the work.
The others? Many reached some extraordinary conclusions about us, nearly all of which were entirely mistaken. For example, that we lacked empathy. Unfortunately for them, they'd missed that we cannot see people's faces properly. No wonder we couldn't get the response right; we couldn't see whether the person was sad or happy. No different to accusing a Deaf friend of lacking empathy, because they couldn't hear your tone of voice.
Then we had the myths that it was normal for us to spend half our day in meltdown. "Oh, that's autism", they'd say, nodding in a wise way over their pince-nez, as we writhed and screamed in pain....and some professionals taught parents and educational professionals how to restrain us and punish us for being in pain. "Those autistic people are trying to control others with their nasty behaviour!", they claimed. No. Unfortunately for them, they had missed all the sensory processing pain that we experience. Then would put us in schools, colleges, workplaces and residential settings that caused intense internal pain for us. They had missed that we were effectively being asked to be in pain all day, every day. They had it totally wrong. That's what happens when some don't have lived experience of autism, and don't listen.
After so many years of clumsy mistake-making, little wonder that there is a new respect for the autistic professionals. People who have a lived experience of autism. People who work together with non-autistic professionals to bring about the best possible training. And the best possible consultancy. And the best possible science, creativity, art, music, teaching.... People who use autism's strengths of honesty, integrity, persistence, creative thinking and accuracy to ensure the very best ideas and teamwork are available. People who know how to value those who communicate differently, and can work well in teams of autistic people from all parts of the spectrum. There have been a good number of non-autistic professionals who can do all of those things too, of course. But they will never know what it is like. It's like hiring in white people to speak for the BME communities. Or hiring just men to speak for women.
How to be a fantastic non-autistic professional? And what to avoid?
Treat us like the human beings we are, not as a patient. We are not 'patients'. We are people with a different brain wiring design, from birth. It has strengths as well as challenges in a loud, busy world. Be properly, genuinely friendly with us. If we are colleagues, then yes, we want a friendly working relationship with you.
Treat us with respect. Value what we have to offer, rather than dismissing it as irrelevant.
Listen to what we say, and assume that it is the truth. No, we are not likely to be lying to you. No, we are not likely to have a poor grasp of reality. We are hugely accurate, if allowed to answer in ways that respect our needs.
Stand up for us when others seek to humiliate us and treat us as if we are worth nothing.
Assume that we are worth our pay. We are not 'grateful' to be allowed the chance to work for nothing. Or for a discount. What we offer is as valuable as it would be from anyone else.
Do not lie to us, thinking that it doesn't matter what you say to an autistic person.
Do not mistreat us, thinking that we will never be believed, so what does it matter.
Include us in meetings and events. It is never OK to leave us out, claiming it was 'too difficult' or that you would 'tell us what happened'. Find a way to make that meeting autism-accessible. It's not hard.
Find out our needs. Respect our communication, sensory and routine-based needs, in particular. People who force eye contact on us and never give us a chance to process what's being said? That's not OK. Meetings where everyone chatters away and we can hear nothing of it? How is that fair?
Do not throw your Titles at us. So you have a lot of letters after your name and are a Dr or Professor? Perhaps we are too. But we aren't bothered by such social constructs. Generalising, of course. We don't judge the worth of a person by their title, their bank account balance, their accent or which University they went to. Those are not relevant to the worth of a person. We tend to be passionate about fairness, about justice, about creating a world where all are fed, warm, loved and safe. I get a lot of people who assume that I must be stacking shelves in a supermarket with careful supervision. I run a £3 million a year Professional Practice. I'm very autistic. As a child, I was that girl that rocked in corners and couldn't speak.
Learn. Keep learning. Keep observing, because you are learning from the real experts. The people who now train you in how to diagnose autism. The people who now provide you with the written materials you use to get those qualifications. The people who work alongside you in industry and schools, in academic work and creative pursuits. People of all kinds and personalities. The quiet ones who use assisted communication or cannot use language? Think they have nothing to offer? Look again. Keep looking, keep learning. There is such a wealth of wisdom, friendship and joy to be found. If only more people would stop putting us in huge pain and fear. If only building designers would take autism into account, and not just wheelchair users.
My fabulous autistic colleagues are now respected as co-leaders in this field of work, alongside you. That's to be celebrated, and respected, and rewarded with proper pay and proper employment.
For decades, we were too often treated as lab specimens or patients by far too many non-autistic professionals. Not all did so. A good number have always been marvellous partners for us in the work.
The others? Many reached some extraordinary conclusions about us, nearly all of which were entirely mistaken. For example, that we lacked empathy. Unfortunately for them, they'd missed that we cannot see people's faces properly. No wonder we couldn't get the response right; we couldn't see whether the person was sad or happy. No different to accusing a Deaf friend of lacking empathy, because they couldn't hear your tone of voice.
Then we had the myths that it was normal for us to spend half our day in meltdown. "Oh, that's autism", they'd say, nodding in a wise way over their pince-nez, as we writhed and screamed in pain....and some professionals taught parents and educational professionals how to restrain us and punish us for being in pain. "Those autistic people are trying to control others with their nasty behaviour!", they claimed. No. Unfortunately for them, they had missed all the sensory processing pain that we experience. Then would put us in schools, colleges, workplaces and residential settings that caused intense internal pain for us. They had missed that we were effectively being asked to be in pain all day, every day. They had it totally wrong. That's what happens when some don't have lived experience of autism, and don't listen.
After so many years of clumsy mistake-making, little wonder that there is a new respect for the autistic professionals. People who have a lived experience of autism. People who work together with non-autistic professionals to bring about the best possible training. And the best possible consultancy. And the best possible science, creativity, art, music, teaching.... People who use autism's strengths of honesty, integrity, persistence, creative thinking and accuracy to ensure the very best ideas and teamwork are available. People who know how to value those who communicate differently, and can work well in teams of autistic people from all parts of the spectrum. There have been a good number of non-autistic professionals who can do all of those things too, of course. But they will never know what it is like. It's like hiring in white people to speak for the BME communities. Or hiring just men to speak for women.
How to be a fantastic non-autistic professional? And what to avoid?
Treat us like the human beings we are, not as a patient. We are not 'patients'. We are people with a different brain wiring design, from birth. It has strengths as well as challenges in a loud, busy world. Be properly, genuinely friendly with us. If we are colleagues, then yes, we want a friendly working relationship with you.
Treat us with respect. Value what we have to offer, rather than dismissing it as irrelevant.
Listen to what we say, and assume that it is the truth. No, we are not likely to be lying to you. No, we are not likely to have a poor grasp of reality. We are hugely accurate, if allowed to answer in ways that respect our needs.
Stand up for us when others seek to humiliate us and treat us as if we are worth nothing.
Assume that we are worth our pay. We are not 'grateful' to be allowed the chance to work for nothing. Or for a discount. What we offer is as valuable as it would be from anyone else.
Do not lie to us, thinking that it doesn't matter what you say to an autistic person.
Do not mistreat us, thinking that we will never be believed, so what does it matter.
Include us in meetings and events. It is never OK to leave us out, claiming it was 'too difficult' or that you would 'tell us what happened'. Find a way to make that meeting autism-accessible. It's not hard.
Find out our needs. Respect our communication, sensory and routine-based needs, in particular. People who force eye contact on us and never give us a chance to process what's being said? That's not OK. Meetings where everyone chatters away and we can hear nothing of it? How is that fair?
Do not throw your Titles at us. So you have a lot of letters after your name and are a Dr or Professor? Perhaps we are too. But we aren't bothered by such social constructs. Generalising, of course. We don't judge the worth of a person by their title, their bank account balance, their accent or which University they went to. Those are not relevant to the worth of a person. We tend to be passionate about fairness, about justice, about creating a world where all are fed, warm, loved and safe. I get a lot of people who assume that I must be stacking shelves in a supermarket with careful supervision. I run a £3 million a year Professional Practice. I'm very autistic. As a child, I was that girl that rocked in corners and couldn't speak.
Learn. Keep learning. Keep observing, because you are learning from the real experts. The people who now train you in how to diagnose autism. The people who now provide you with the written materials you use to get those qualifications. The people who work alongside you in industry and schools, in academic work and creative pursuits. People of all kinds and personalities. The quiet ones who use assisted communication or cannot use language? Think they have nothing to offer? Look again. Keep looking, keep learning. There is such a wealth of wisdom, friendship and joy to be found. If only more people would stop putting us in huge pain and fear. If only building designers would take autism into account, and not just wheelchair users.
My fabulous autistic colleagues are now respected as co-leaders in this field of work, alongside you. That's to be celebrated, and respected, and rewarded with proper pay and proper employment.
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