In today's papers, further coverage of a teenager, James F, who killed two people in planned attacks. He has been sentenced to 27 years in prison.
We learn a lot about this young person, from the news reports. We learn that he is ..
Male
Has short brown hair
White
Wears glasses
Lives in Colchester
Went to school
Was sitting his GCSE exams
Had a psychopathic personality
Got an autism diagnosis as well, after his arrest when being held in a secure unit.
The Judge in the case was quite clear with the Jury that autism does not cause violence.
Dr Sarah Clayton, a specialist Clinical Psychologist, explains:
"In summary, there is as little chance of someone on the autism spectrum carrying out a violent crime as someone who does not have autism. In fact, research often shows a reduced risk of crime in people on the autism spectrum, due to their strong sense of what is right and wrong.”
Important words. And accurate.
There are well over a million autistic people in the UK. One can make a good case for saying it is 1 in 30 of the population, which would put the figure upwards of two million. We are peaceful, gentle, caring people, on average. Autism is not a mental health condition. It does not cause deliberate violence. It does not make people into psychopaths. If anything, it does the opposite of that. There were myths about 'lack of empathy'. Those have been proven wrong.
Very very occasionally, out of these more-than-a-million, an autistic person will also be a psychopath. And it's the psychopath that may become a killer.
There are a lot of people with brown hair. We should not be afraid of people with brown hair.
There are a lot of people who live in Colchester. We should not be afraid of people who live in Colchester.
There are a lot of people who are autistic. We have no reason to be afraid of autism. It's a sensory processing difference, where people focus on hobbies and special interests, and like routine and rules. Often geeky and quirky, keen on social justice and fairness.
Psychopaths, though? Yes, I can safely say that there's good reason to be cautious around them. Some - a few - do things like this.
Please be careful what we blame for this type of violence.
Make sure we report the correct cause of events in media.
Autistic people are usually the victims of crime. We tend to die much earlier than others because our quality of life is already so poor, on average. We don't need to be more marginalised and feared-for-no-good-reason than we already are.
Huge thanks. And much prayer for the families, friends and communities of the individuals who were killed by this teenager, and those who were part of the life of James. My heart breaks for them.
Saturday, 30 April 2016
Friday, 29 April 2016
Decoding "The A Word"
The BBC series, The A Word, about an autistic young man called Joe, has led to a lot of questions from friends of ours.
"Why did he do that, Ann?"
Joe is, of course, a fictional character, so there is no one answer that is certain to be true. But, in Joe, I recognised so much of my own childhood, and learning styles.
Let's have a look at some of things we saw in the series:
Joe and his music. We learn that Joe is nearly always listening to music, often through headphones. He sings along to the songs, word-perfect.
Two main possibilities here. Firstly, headphones cut out most of the background noise. Many autistic people have brains that take in every bit of background noise, and cannot filter it out. The recent National Autistic Society short film shows a bit of our sensory world http://www.autism.org.uk/get-involved/tmi/film.aspx You'll need the sound turned up.
Secondly, going back to my own childhood, I learned words through music and musicals. One of my first words was 'supercalafragalisticexpealidocious'. I had listened over and over to the musical, and I could detect words that were sung. Somehow the 'music channel' in my brain was working, but the usual speech-channel was not. It was a huge and painful struggle to say spoken words. I could sing some, though. We can see some good research happening around this. It won't apply to all autistic children. We all have our own way of accessing the world.
Joe focusing through a ring-pull off a can, to look at a landscape. Many of us have brains that take in huge amounts of visual information at once. Having some way to focus on just a part of it...perhaps through looking at just one part at a time - well, that can really help.
Joe and the shutdown on the floor at the party. Lots of people who were astonished that we didn't see a 'proper meltdown like real autistic people have'. 70% of autistic people report that it's usual to 'shut down', not have a 'meltdown'. Both are brain events, not a temper tantrum. Brain wiring that overheats from too much social input at parties, for example...well, it can either get an electrical storm which causes wild erratic behaviour (meltdown), or it can switch itself off to allow brain cooling (shutdown). He was starting to go into emergency brain-cooling. Onto the mat, where he could feel where his body was. Knowing where we are in a space, in a room filled with fast moving noisy people...well, it's very hard. Having physical pressure on our bodies can help us at least know where we are. He knew where he was; on the floor. Phew. But unable to speak or interact with the others. It's a horrible, scary feeling when it starts to happen. Parties are not a good sensory environment from brains that take in too much information. They are often the ambition of parents, not the child.
Most autistic children do not 'look autistic'. It is not about meltdowns, for a good number. And those are, arguably, the children most at risk of being missed from diagnosis and support. The quiet ones who appear to be 'coping'. We're not. We're often terrified, but can't show it.
Joe and the running away. He'd been taken to a party filled with cooking smells, noise, social interaction. Then his grandfather took him to a strange house and left him with people he didn't know. Yikes. His brain must have been on absolute painful superheat of anxiety and overload. No wonder he did a sensible thing and took himself off to somewhere safe, away from this weird family doing painful scary things.
Joe and the lift service in the mornings. He takes himself for a walk. Each morning, a van drives up the road and gives him a lift back again. In one scene, we see how unfocussed that scene looks to Joe. He has no idea who the people are. So many of us are faceblind; unable to recognise who is who from their faces. We have to learn to trust 'total strangers' all the time....and of course, many then have scary experiences and learn not to trust anyone at all as a result.
Joe's behaviour makes wonderful sense to me, as an autistic adult. So beautifully played by the young actor, Max Vento. Very much hoping there will be a series 2 along soon.
"Why did he do that, Ann?"
Joe is, of course, a fictional character, so there is no one answer that is certain to be true. But, in Joe, I recognised so much of my own childhood, and learning styles.
Let's have a look at some of things we saw in the series:
Joe and his music. We learn that Joe is nearly always listening to music, often through headphones. He sings along to the songs, word-perfect.
Two main possibilities here. Firstly, headphones cut out most of the background noise. Many autistic people have brains that take in every bit of background noise, and cannot filter it out. The recent National Autistic Society short film shows a bit of our sensory world http://www.autism.org.uk/get-involved/tmi/film.aspx You'll need the sound turned up.
Secondly, going back to my own childhood, I learned words through music and musicals. One of my first words was 'supercalafragalisticexpealidocious'. I had listened over and over to the musical, and I could detect words that were sung. Somehow the 'music channel' in my brain was working, but the usual speech-channel was not. It was a huge and painful struggle to say spoken words. I could sing some, though. We can see some good research happening around this. It won't apply to all autistic children. We all have our own way of accessing the world.
Joe focusing through a ring-pull off a can, to look at a landscape. Many of us have brains that take in huge amounts of visual information at once. Having some way to focus on just a part of it...perhaps through looking at just one part at a time - well, that can really help.
Joe and the shutdown on the floor at the party. Lots of people who were astonished that we didn't see a 'proper meltdown like real autistic people have'. 70% of autistic people report that it's usual to 'shut down', not have a 'meltdown'. Both are brain events, not a temper tantrum. Brain wiring that overheats from too much social input at parties, for example...well, it can either get an electrical storm which causes wild erratic behaviour (meltdown), or it can switch itself off to allow brain cooling (shutdown). He was starting to go into emergency brain-cooling. Onto the mat, where he could feel where his body was. Knowing where we are in a space, in a room filled with fast moving noisy people...well, it's very hard. Having physical pressure on our bodies can help us at least know where we are. He knew where he was; on the floor. Phew. But unable to speak or interact with the others. It's a horrible, scary feeling when it starts to happen. Parties are not a good sensory environment from brains that take in too much information. They are often the ambition of parents, not the child.
Most autistic children do not 'look autistic'. It is not about meltdowns, for a good number. And those are, arguably, the children most at risk of being missed from diagnosis and support. The quiet ones who appear to be 'coping'. We're not. We're often terrified, but can't show it.
Joe and the running away. He'd been taken to a party filled with cooking smells, noise, social interaction. Then his grandfather took him to a strange house and left him with people he didn't know. Yikes. His brain must have been on absolute painful superheat of anxiety and overload. No wonder he did a sensible thing and took himself off to somewhere safe, away from this weird family doing painful scary things.
Joe and the lift service in the mornings. He takes himself for a walk. Each morning, a van drives up the road and gives him a lift back again. In one scene, we see how unfocussed that scene looks to Joe. He has no idea who the people are. So many of us are faceblind; unable to recognise who is who from their faces. We have to learn to trust 'total strangers' all the time....and of course, many then have scary experiences and learn not to trust anyone at all as a result.
Joe's behaviour makes wonderful sense to me, as an autistic adult. So beautifully played by the young actor, Max Vento. Very much hoping there will be a series 2 along soon.
Tuesday, 26 April 2016
Autism and Acceptance: The 'Overton Window'
I thank my USA colleagues for introducing me to the "Overton Window". It was a book by Glenn Beck. It describes which ideas people will tolerate, and which are rejected. Which are debated, and which are silenced as being too unacceptable.
I've designed an example. It is shown below.
The example is the reality that some autistic people can make good business leaders. Right now, that's unthinkable by most of the public. We need people to understand that it's a reality, and gradually change their opinion. They need to first consider it as a radical idea. Then realise it's acceptable. Then realise it's sensible. We can have excellent skills of integrity, fantastic specialised knowledge, dedication, etc. Not all autistic people are good at being a professional or leader. Not all people with blonde hair or size seven feet make good business leaders or professionals either. It depends on the skill set. But it is true that we have autistic professionals; lawyers, accountants, surveyors, doctors, etc. Many are too worried to disclose it. Why? Because of that 'Overton Window' effect. The public deciding what's unthinkable, and what's not.
Ideas start off as 'unthinkable'. People won't debate them. Then are 'radical'. Debate starts. Then ideas may be become 'acceptable'. Then are seen as 'sensible'. Some go on to be 'popular'. Politicians mostly like the 'popular' ones. Those are the ones that get laws, funding, etc.
So much about autism is still apparently unthinkable. The idea that many of us are women. Or identify as part of the LGBT community. Or can talk. Or are just as likely to be nice, kind people. Or, indeed, can be competent and highly skilled employees and leaders, in the right place/with the right team and support.
People like me and so many excellent colleagues? We gradually shift the 'Overton Window'. We get people thinking about why it's unthinkable. Gradually moving the debate along, past 'radical', and into 'acceptable'. Once it's there, we can start really talking about the realities. We get the data. We keep asking to be heard.
Right now, society pretends most of us don't exist. In media and debates, so often autistic people have to be male, have to be 'dangerous', have to be non-verbal or a computer-geek. The others of us...the majority....we are invisible. We're not in that 'Overton Window' of public debate yet. If we try discussing the 'unthinkable' ideas, we get silenced. We get demonised. We are seen as troublemakers. The people no-one wants on the media.
Let's work together to get that debate shifted to where it belongs. Where autistic people are seen as we are, as people with so much to give. Not as a set of walking myths and misunderstandings, or 'self narrating zoo exhibits'.
I am very thankful for excellent colleagues in this country and elsewhere who want to be part of that change.
I've designed an example. It is shown below.
The example is the reality that some autistic people can make good business leaders. Right now, that's unthinkable by most of the public. We need people to understand that it's a reality, and gradually change their opinion. They need to first consider it as a radical idea. Then realise it's acceptable. Then realise it's sensible. We can have excellent skills of integrity, fantastic specialised knowledge, dedication, etc. Not all autistic people are good at being a professional or leader. Not all people with blonde hair or size seven feet make good business leaders or professionals either. It depends on the skill set. But it is true that we have autistic professionals; lawyers, accountants, surveyors, doctors, etc. Many are too worried to disclose it. Why? Because of that 'Overton Window' effect. The public deciding what's unthinkable, and what's not.
Ideas start off as 'unthinkable'. People won't debate them. Then are 'radical'. Debate starts. Then ideas may be become 'acceptable'. Then are seen as 'sensible'. Some go on to be 'popular'. Politicians mostly like the 'popular' ones. Those are the ones that get laws, funding, etc.
So much about autism is still apparently unthinkable. The idea that many of us are women. Or identify as part of the LGBT community. Or can talk. Or are just as likely to be nice, kind people. Or, indeed, can be competent and highly skilled employees and leaders, in the right place/with the right team and support.
People like me and so many excellent colleagues? We gradually shift the 'Overton Window'. We get people thinking about why it's unthinkable. Gradually moving the debate along, past 'radical', and into 'acceptable'. Once it's there, we can start really talking about the realities. We get the data. We keep asking to be heard.
Right now, society pretends most of us don't exist. In media and debates, so often autistic people have to be male, have to be 'dangerous', have to be non-verbal or a computer-geek. The others of us...the majority....we are invisible. We're not in that 'Overton Window' of public debate yet. If we try discussing the 'unthinkable' ideas, we get silenced. We get demonised. We are seen as troublemakers. The people no-one wants on the media.
Let's work together to get that debate shifted to where it belongs. Where autistic people are seen as we are, as people with so much to give. Not as a set of walking myths and misunderstandings, or 'self narrating zoo exhibits'.
I am very thankful for excellent colleagues in this country and elsewhere who want to be part of that change.
Saturday, 23 April 2016
Autism: Reactions to medication - background for health professionals
I am not a Doctor. I am a patient, and an autism expert who has talked about medication with a very large number of other autistic friends, colleagues and family members. I also train medical professionals on autism, including work with the Royal College of Psychiatrists and with hospital groups and GP Practices nationally.
Autism, as we know, is not a mental health condition and there isn't a medication that 'cures' our brain design. It's designed to work that way from birth, and stays like it. But, like everyone else, we can have other health conditions that need treatment.
Autistic people may tend to respond differently to medication.
What have I learned from talking to autistic people? Some examples: It may have no effect on us. It may work far too strongly. It may have unusual or particularly long lasting side effects. Especially any drug that is designed to affect the way the brain works.
What can be different, with medications? An example or two from my own life. I am a cancer patient. I had chemotherapy. (FEC + Tax). I was so unaffected by a very tough regime of it that I continued to work all the way through. Some usual side effects, but I was able to keep going. Then Herceptin. A mild drug with few major side effects, by comparison. I responded so badly to it that they had to stop using it.
Alcohol; has no effect other than to numb sensory pain, so I have to be very careful indeed to drink only a moderate amount.
Coffee; sends me to sleep.
Everyone's reactions will be different.
My advice to medical teams is to listen very carefully to what your autistic patient tells you about drug effects. We are very unlikely to exaggerate. Most likely, we will under-report.
It can be difficult for some of us to explain how we are feeling, so allow time. And allow people to write or draw how they feel, if that helps.
Many of us cannot identify pain levels very well, and may struggle to know where pain is coming from, or how bad it is. Our son played rugby for weeks with a broken foot, because he had no idea it hurt. The medical team asked him if it hurt, and when he said it did not, they did not send him for X Ray. Be cautious about accepting our assessment of pain levels. Some are super-sensitive to pain. Others barely notice it. And that can vary over time, too.
Many of us struggle with the sensory environment in medical rooms. Above, a picture showing how such a room looks to me, but also with flickering overhead lights (like a strobe light effect). Intense colours, blinding glare. Add in random questions, everyone in a hurry to see patients in super-fast time. Long random waiting times that cause intense anxiety and stop good communication. Intense chemical smells. Pain from physical examination on too-sensitive skin. Intense pain and discomfort from procedures that others can tolerate. Little wonder that so many autistic people cannot access this at all. The times I've wanted to run away from medical appointments in the past, because the sensory pain is so bad. Thankful for a lovely local GP and a thoughtful cancer team.
There's a lot to consider, with autism and health conditions. Make sure you get really good training. We know from the recent research highlighted by Autistica that autistic people tend to die some 16 years earlier than others. Healthcare plays a huge part in keeping people alive and healthy. That is a situation where we can all work together to help avoid other young people dying.
Be aware of autism needs. Be aware of potential autism-related reactions and responses to medication. Be ready to adjust and adapt environments, examination methods, questions and medication. Get in contact with good autism training teams that include autistic trainers, and check your profession's information and advice on this subject.
More than a million autistic people in the UK. It's not a small number. Make sure you know how to offer effective and respectful treatment for health needs.
Thank you for listening.
Autism, as we know, is not a mental health condition and there isn't a medication that 'cures' our brain design. It's designed to work that way from birth, and stays like it. But, like everyone else, we can have other health conditions that need treatment.
Autistic people may tend to respond differently to medication.
What have I learned from talking to autistic people? Some examples: It may have no effect on us. It may work far too strongly. It may have unusual or particularly long lasting side effects. Especially any drug that is designed to affect the way the brain works.
What can be different, with medications? An example or two from my own life. I am a cancer patient. I had chemotherapy. (FEC + Tax). I was so unaffected by a very tough regime of it that I continued to work all the way through. Some usual side effects, but I was able to keep going. Then Herceptin. A mild drug with few major side effects, by comparison. I responded so badly to it that they had to stop using it.
Alcohol; has no effect other than to numb sensory pain, so I have to be very careful indeed to drink only a moderate amount.
Coffee; sends me to sleep.
Everyone's reactions will be different.
My advice to medical teams is to listen very carefully to what your autistic patient tells you about drug effects. We are very unlikely to exaggerate. Most likely, we will under-report.
It can be difficult for some of us to explain how we are feeling, so allow time. And allow people to write or draw how they feel, if that helps.
Many of us cannot identify pain levels very well, and may struggle to know where pain is coming from, or how bad it is. Our son played rugby for weeks with a broken foot, because he had no idea it hurt. The medical team asked him if it hurt, and when he said it did not, they did not send him for X Ray. Be cautious about accepting our assessment of pain levels. Some are super-sensitive to pain. Others barely notice it. And that can vary over time, too.
Many of us struggle with the sensory environment in medical rooms. Above, a picture showing how such a room looks to me, but also with flickering overhead lights (like a strobe light effect). Intense colours, blinding glare. Add in random questions, everyone in a hurry to see patients in super-fast time. Long random waiting times that cause intense anxiety and stop good communication. Intense chemical smells. Pain from physical examination on too-sensitive skin. Intense pain and discomfort from procedures that others can tolerate. Little wonder that so many autistic people cannot access this at all. The times I've wanted to run away from medical appointments in the past, because the sensory pain is so bad. Thankful for a lovely local GP and a thoughtful cancer team.
There's a lot to consider, with autism and health conditions. Make sure you get really good training. We know from the recent research highlighted by Autistica that autistic people tend to die some 16 years earlier than others. Healthcare plays a huge part in keeping people alive and healthy. That is a situation where we can all work together to help avoid other young people dying.
Be aware of autism needs. Be aware of potential autism-related reactions and responses to medication. Be ready to adjust and adapt environments, examination methods, questions and medication. Get in contact with good autism training teams that include autistic trainers, and check your profession's information and advice on this subject.
More than a million autistic people in the UK. It's not a small number. Make sure you know how to offer effective and respectful treatment for health needs.
Thank you for listening.
Saturday, 16 April 2016
Autism: Not a mental health condition. And about 'suffering'
One of the biggest misunderstandings out there? That autism is a 'mental health condition'. It isn't.
At all.
It's no more a mental health condition than you being male, female, tall, short, or left handed is.
It is a design of human brain, from birth. Our brains are designed to work differently.
I don't like stigma of any kind. Not against autism, learning disability, physical health conditions, mental health conditions, or anything else.
I have had anxiety, depression and OCD because the intense pressure of living in a social world not designed for me. Those are indeed mental health situations. They are not autism.
Autism is a brain that handles too much incoming info at once, and doesn't always manage it too well. Fantastic for detecting tiny changes in things. Rubbish for handling noisy places filled with people. Sooner or later, all that input causes our brain wiring to overheat, which hurts. Then, we need it to literally cool down. Simple, really. So very simple.
Instead of understanding that simple thing, we've had a world of weirdness to contend with. Counsellors and other healthcare people who believe it's our 'bad attitude'. People who believe we are delusional, incompetent, malicious, rude, lazy or any number of other really horrible misunderstandings and nastiness.
We've had people cut us out of almost every service and provision, because 'people like that can't be trusted to know what's good for them'. Or 'people like that can't be trusted to be a good addition to the group'.
How would you feel if they said that about you as a woman, or as a white person, or as someone with size seven feet?
It's a nonsense. And it is so hurtful to autistic people. Whether we are verbal or not.
Assume competence. Assume understanding. And always always be respectful.
Whilst we're on the subject of respect, we do not 'suffer from' autism. It is not a disease. We suffer from other people making our lives hell. With buildings that cause immense pain, with clothing that hurts like hell, with lighting that hurts our eyes and flickers at a frequency that causes epilepsy-like events in many. With perfumes that swamp our senses. With noise that absolutely deafens us. With attitudes that belittle and 'other' us.
So easy to put this stuff right. But the longer you leave us out of the room and pretend we are the problem, not the solution, not partners, not friends, not colleagues....well, the more 'suffering' for us there's going to be. And we have had enough already, thanks.
Thank you for listening.
At all.
It's no more a mental health condition than you being male, female, tall, short, or left handed is.
It is a design of human brain, from birth. Our brains are designed to work differently.
I don't like stigma of any kind. Not against autism, learning disability, physical health conditions, mental health conditions, or anything else.
I have had anxiety, depression and OCD because the intense pressure of living in a social world not designed for me. Those are indeed mental health situations. They are not autism.
Autism is a brain that handles too much incoming info at once, and doesn't always manage it too well. Fantastic for detecting tiny changes in things. Rubbish for handling noisy places filled with people. Sooner or later, all that input causes our brain wiring to overheat, which hurts. Then, we need it to literally cool down. Simple, really. So very simple.
Instead of understanding that simple thing, we've had a world of weirdness to contend with. Counsellors and other healthcare people who believe it's our 'bad attitude'. People who believe we are delusional, incompetent, malicious, rude, lazy or any number of other really horrible misunderstandings and nastiness.
We've had people cut us out of almost every service and provision, because 'people like that can't be trusted to know what's good for them'. Or 'people like that can't be trusted to be a good addition to the group'.
How would you feel if they said that about you as a woman, or as a white person, or as someone with size seven feet?
It's a nonsense. And it is so hurtful to autistic people. Whether we are verbal or not.
Assume competence. Assume understanding. And always always be respectful.
Whilst we're on the subject of respect, we do not 'suffer from' autism. It is not a disease. We suffer from other people making our lives hell. With buildings that cause immense pain, with clothing that hurts like hell, with lighting that hurts our eyes and flickers at a frequency that causes epilepsy-like events in many. With perfumes that swamp our senses. With noise that absolutely deafens us. With attitudes that belittle and 'other' us.
So easy to put this stuff right. But the longer you leave us out of the room and pretend we are the problem, not the solution, not partners, not friends, not colleagues....well, the more 'suffering' for us there's going to be. And we have had enough already, thanks.
Thank you for listening.
Thursday, 14 April 2016
Glamour, PR and Autism
Something I've noticed about autism.
Attractive, well presented, fashionable, well spoken people. Specially picked for their media-ready skills. Sometimes parents of autistic children. Elegant, co-ordinated, perfect social skills, big smiles, lots of contacts of Just The Right Sort. Groups of photographers snapping away with their cameras, getting the best possible shots of this wonderful sight. Big gala evenings that autistic people cannot access.
And, somewhere in the background, out of camera angle, out of sight, out of hearing, autistic people. An afterthought.
Do we use 'glamour' to cover up a deep fear of autism and what we are actually like?
You see, it's such a strange thing to do, to promote autism acceptance.
I have some marvellously glamorous autistic friends. Sometimes they are asked to go in front of cameras to promote autism. Great. Except...they aren't paid. Only the non-autistic 'stars' are.
Isn't that interesting. And the opposite of the message we are supposed to be promoting?
The thing is, most of us struggle with fashion. The clothing hurts so much to wear. We tend to wear the same sort of thing every day.
We may struggle with makeup and hairstyles, because of sensory and co-ordination issues.
We may struggle with voice tone and 'camera ready smiling', because that's part of autism.
Genuine autistic differences that need understanding, not erasing from view.
So...is it the exact opposite of promoting autism, when we put in front of cameras and listeners highly paid people who are 'better than us'. [Note that I put that in quote marks. They are not. But in the media-obsessed world we live in, media stars are often given high status]
Look beyond the glitz and glamour, please. And beyond the stereotypes of 'Oh we have to speak for them, the poor dears, they can't do it for themselves'. And beyond the strange behaviour of not paying us, but paying other people to speak for us. Great when we work with fellow non-autistic professionals who are respectful, of course. But always ask yourself, at any autism event, where are the autistic voices here? Or autistic communications of other kinds if someone is non-verbal?
We can communicate. We have very important things to say for ourselves. And I am so honoured to speak with so many other wonderful autistic trainers and presenters. For example with Autism Oxford UK, national award winners for their services to autism.
If people are only supporting autism because they like looking at glamorous non-autistic people, with perfect social skills, it's quite possible that they haven't understood autism yet. We need acceptance, affirmation and money, the same as everyone else does.
Keep searching, and learning. We're worth it.
Attractive, well presented, fashionable, well spoken people. Specially picked for their media-ready skills. Sometimes parents of autistic children. Elegant, co-ordinated, perfect social skills, big smiles, lots of contacts of Just The Right Sort. Groups of photographers snapping away with their cameras, getting the best possible shots of this wonderful sight. Big gala evenings that autistic people cannot access.
And, somewhere in the background, out of camera angle, out of sight, out of hearing, autistic people. An afterthought.
Do we use 'glamour' to cover up a deep fear of autism and what we are actually like?
You see, it's such a strange thing to do, to promote autism acceptance.
I have some marvellously glamorous autistic friends. Sometimes they are asked to go in front of cameras to promote autism. Great. Except...they aren't paid. Only the non-autistic 'stars' are.
Isn't that interesting. And the opposite of the message we are supposed to be promoting?
The thing is, most of us struggle with fashion. The clothing hurts so much to wear. We tend to wear the same sort of thing every day.
We may struggle with makeup and hairstyles, because of sensory and co-ordination issues.
We may struggle with voice tone and 'camera ready smiling', because that's part of autism.
Genuine autistic differences that need understanding, not erasing from view.
So...is it the exact opposite of promoting autism, when we put in front of cameras and listeners highly paid people who are 'better than us'. [Note that I put that in quote marks. They are not. But in the media-obsessed world we live in, media stars are often given high status]
Look beyond the glitz and glamour, please. And beyond the stereotypes of 'Oh we have to speak for them, the poor dears, they can't do it for themselves'. And beyond the strange behaviour of not paying us, but paying other people to speak for us. Great when we work with fellow non-autistic professionals who are respectful, of course. But always ask yourself, at any autism event, where are the autistic voices here? Or autistic communications of other kinds if someone is non-verbal?
We can communicate. We have very important things to say for ourselves. And I am so honoured to speak with so many other wonderful autistic trainers and presenters. For example with Autism Oxford UK, national award winners for their services to autism.
If people are only supporting autism because they like looking at glamorous non-autistic people, with perfect social skills, it's quite possible that they haven't understood autism yet. We need acceptance, affirmation and money, the same as everyone else does.
Keep searching, and learning. We're worth it.
Tuesday, 12 April 2016
Autism: Girls and School - a personal reflection
There's pretty good science to suggest that 1 in 30 people is autistic. One in every class at school, on average.
Probably half of those are girls.
Talking with fellow professionals over the years, many have said, (paraphrased) "We thought we'd found all the autistic pupils. But then when we did a general test of the whole school, we found a lot more. The quiet ones. And the girls."
That's the trouble with myths. The myth that autism is all about boys. The myth that it 'looks like' a badly behaved angry individual who disrupts places. Pure myths. But powerful ones. So powerful that the quiet ones, and nearly all the girls, are missed from timely diagnosis.
I was missed. I grew up in an age when autism was something to do with care home and low IQ and profound multiple disability. The idea that there were autistic girls in ordinary schools wasn't even imagined.
I was so fortunate, in a way. I went to school in the age of desks being in rows, facing forward. In quiet classrooms. With strict understandable rules. I could almost cope, all day long.
But how did I cope? See that photo at the top? That's how I see a modern classroom with fluorescent lighting. It flickers like a strobe light, too. The noise is deafening, from group work chatter. From chairs scraping back and forth. From computer and projector machinery whirring. Deafening. Blinding. Exhausting. I cannot see who is who. But I must endure it. It wasn't quite that bad when I was at school as a pupil, many years ago, thankfully.
I have worked as a Governor of schools for many years until recently. Going into a classroom and staying there was an act of endurance. I couldn't do more than half a day. So often, teachers would say, (paraphrased), "We have taken the best advice from Dr Autism-Specialist, but child X is still causing difficulties. We put in place a structured timetable. We allowed a time-out space in a quiet area. We are stuck". Into the classroom I'd go. I'd sit there under that strobe light effect, in the deafening noise. I'd go into the 'quiet room', with its own strobe-light effect and deafening noise from outside traffic/heating vents/nearby classrooms, etc. And I'd watch a child enter school, bravely, nervously, and then fade into exhaustion, pain and fear as the day went on. I'd watch them at break times, nervously pacing the fencing, trying to avoid the bullies and the social pain. Desperate for quiet and structure in that chaos. A chaos that others experience as 'having fun'. I'd watch them signal their distress using their own 'language', and get ignored, time after time. Until they did something 'disruptive'. Then, punishment.
It helps greatly if schools ask people who can experience what the pupil is experiencing, to a good extent. Non-autistic professionals are great for generalising. They can't always help with specifics on sensory issues. They can't detect the problem. Their senses are not autistic. And the sensory issues are huge, for so many autistic pupils.
Socially, well, I would say something about my social skills and school. But I did what most autistic girls do. I found someone who 'adopted' me as a friend, and I spent many years learning basic non-autistic social skills from them. Just by watching. Mostly, I spent school trying to avoid the bullies. With it came violence, mockery, things being taken away from me, my stuff being damaged, me being shoved and pushed over. I was nearly always non-verbal. I couldn't say anything back. I was un-co-ordinated and bad at sports. I couldn't fight back. Perfect target. Even better when I'm faceblind and couldn't rightly say who did whatever it was. After all, they were all wearing the same uniform. An average-height person with mid-brown hair? That could have been any one of 100 pupils.
By the end of the school day, I was so exhausted that I couldn't think what to do with myself. I would walk to the bus, and sit there, pressed into a corner, desperate to find even the tiniest space in which I could be safe. Often, fellow pupils would get on the bus, and stare at me. That rude Ann who 'refused to speak to them'. I couldn't talk. It took forever for me to think of how to say words in the right order, at the right time. The opportunity would be long past, by the time I thought of it. The effort was huge. So, silence. They just thought I was rude. Coming from a family with little money, I'd be in second hand clothing in 'own clothes days', with a basic hair cut. I relied on free school meals for a good bit of the time, and endured the staring that went with that. But I had a hot meal. That was good.
Most teachers didn't know I was even in their class, really. I didn't speak. I couldn't. I would turn up, and sit there, and try to memorise what they were saying and showing me. Quietly, in the most well-behaved way you could ever imagine. There were two teachers who saw me. Actually saw me. Saw me enough to ask me how I was. One, a kind class tutor. She spoke to me, kindly, in year 5. I will always remember that act of kindness. And the Head Teacher, who had told me off in front of the entire school for being unwell too often....but then called me into her study and let me have the space to explain how I felt. She apologised to me. She had no idea that I went from the hell of bullying at school...home to be a young carer to a very ill Mum. All whilst coping with physical health problems of my own. I got excellent O and A level results. I took work home, and memorised it for hour after hour. I loved subjects which were visual, like geography, art, biology. Things I could imagine in 3-D. I have a very visual form of autism.
The pressure on me was relentless. By age 17, I had developed severe anxiety and panic attacks. I'd developed food phobias and full-on OCD. People didn't know. I had no way to even explain. My couple of friends didn't know either. I couldn't say. I once went to my GP to ask for help. She told me to pull myself together and stop worrying my family. No-one knew I was autistic.
I lived next to a Priest. He never spoke to me. I was the 'rude girl' from next door. I was glad of God, though. I couldn't hear God myself, but I had pictures that showed that God cared about me and loved me. In the darkest moments, that was what kept me going. That, and simple structured services each day at school, where I could learn about God from the Head Teacher. That chance for schools to teach about faith...well, they have no idea how much it can help some pupils.
I wish, with all my heart, for a different world for our wonderful, kind, caring autistic pupils. Whatever their gender, and background. I wish for a world that didn't hurt. A world free of bullying. A world where there was always a kind teacher who saw us. And who asked how we are.
How do we work together, as fellow professionals, on making that dream of safety and thriving a reality?
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