It is a delight to be working with so many colleagues in Psychiatry, Psychology and the related fields.
One of the questions I get from delegates at lectures is whether standard psychological tests work with autistic people.
Depends on the test.
Let's look at the Green et al "Paranoid Thoughts Scale", Part A, as an example. I note that there has been some limited research into autism and paranoia, using such questions. The results have left the researchers rather puzzled. I'm not surprised.
The test subjects are asked to answer questions about the last month of their lives. For each one, they rate the answer between 1 (never) and 5 (huge amounts of times). Ideally, a person would have a very low score.
Autistic people are very literal, and will not 'read for context'. Generalising, of course. But one must start with that in mind. We also know that 80% of autistic individuals really do experience extensive bullying, and that autistic individuals often do have negative experiences with others. So a literal answer of 'yes' may be completely accurate information. The research into these things is there for all to find.
Question 2: "I often heard people referring to me". Here's our first real challenge. For example, if I thought about my last month, I'd confidently say that was a yes. But...I have excellent hearing, and I am a trainer/lecturer. I really can hear people chatting positively about my work in the training courses and lectures. So, my response of '4 - often' is accurate, and reflects reality. I have not read for context and realised that this question actually meant, "I often heard people talking about me in nasty ways" (or words to that effect). If asked that, I'd say no. Not once in the last month. But I have now scored highly for paranoia, even though not paranoid.
Question 6: "People have been dropping hints for me". I don't know what this question means. Dropping them where? On the floor? <visions of people writing handy hints on slips of papers and leaving a trail of them> This is an expression. It may mean nothing at all to someone with a more visual form of autism. I would suggest a rephrasing, but someone will have to tell me what the question means, first. I'm genuinely baffled. Remember, I'm a real live autistic person, so you get actual responses.
Question 7: "I believe that certain people are not what they seemed". I don't know what this means either. People are people. They're not going to turn out to be dolphins or bookcases. The question needs re-phrasing so that most autistic people understand it.
Question 10: "I was certain that people have followed me". Remember how literal we are? My brain delivered all the information for the last month on this. The times I've been in queues of traffic with lots of cars following one another, as they do, quite normally. Or in queues to get lunch, where we all follow one another in the queue. Sometimes there are people in queues behind me. Logically, they are following me to the front of the queue to pay for their food, etc. So the answer is definitely yes. But that's not what the psychologists are hoping for, one assumes? The question needs rephrasing.
Just a few examples. But one can see how fast a questionnaire can yield useless or misleading results. We get a lot of autistic women, for example, who are misdiagnosed with schizophrenia. It's possible to see how that happens. Would I use the GPTS for autism? No.
Do always check for understanding. Be prepared to explain and rephrase questions, and then carefully note how that was done. Think carefully about the answers given. A lot of autistic people are ending up with wrong diagnoses because we do not understand the evaluation questions. It can lead to inappropriate medication and very poor outcomes for us.
Autism, as we know, is not a mental health condition. It is a global cognitive difference, with areas of ability and difficulty. It is there for life, and our lives can be vastly improved with better understanding from others, clear instructions for us, and a good sensory environment. Paranoia is not one of its diagnostic criteria. If anything, many of us are too trusting and too naïve.
Our literalism can be a major obstacle to getting the right diagnosis and services. Do make sure that you get good training in autism and evaluation.
Monday, 30 November 2015
Friday, 20 November 2015
Flawed research on autism
20 years working in the world of autism. The honour of working with autistic family, friends, colleagues nationally and internationally. Wonderful, caring, quirky, dedicated, honest people of the most extraordinary integrity.
But still we have books being marketed which portray us in horrific ways, based on flawed research from the 1990s or early 2000s.
Back then, they had found hardly any autistic adults at all.
There has been no path to diagnosis for most of us until the last few years. There are huge waiting lists for diagnosis. We have still not found everyone. We are only just realising that about half of autistic people are female.
In, say, 2003, there were perhaps 1 in 50 autistic people discovered. The only ones who had been discovered were those whose behaviour was so extraordinary that they had been totally outrageously obvious. Especially the women who were discovered back then. So extraordinary different from 'normal autism' that they actually got noticed. Thing is, autism is an invisible disability. You can't see it. That's how unremarkable it is, normally.
So, who got diagnosed, back in 2003? Often people with multiple conditions, often with mental health conditions or personality disorders as well as autism. Perhaps those who weren't autistic at all, but had sociopathic conditions. It was common back them to imagine that autistic people were incapable of love and empathy. That's been debunked, thoroughly. Thus, we found only the outliers, those who were autistic-and-something-else.
An example? A brilliant idea, back in the early 2000s, of asking mostly people who were in for marriage guidance whether their autistic partner was well behaved.
Guess what.
Some of them sometimes weren't.
That's why they were in marriage guidance counselling.
And still....still, we have people who are reading and believing that such research from that tiny sample in ancient times applies to all autistic people discovered since then.
When that happens, people are not reading about the wonderful gentle people who are the vast majority. Not the majority of us whose behaviour never gets more extreme than going non-verbal and leaving a room quietly. Not the loving partners, the caring parents, the fab quirky friends. Just something based on that kind of ancient bit of flawed research.
This is 2015. We know better. There are so many who are truly ashamed that they produced such shocking things about the supposed 'normal' behaviour of autistic adults.
All we can do, as autistic responsible gentle, caring individuals is implore people to check what they are offering for sale. Check whether it matches current research. And if it does not, please pull it off your shelves. Real people get hurt with this stuff. They lose their jobs. They lose the trust of others. They live lonely, awful lives. They are pre-judged and pre-hated through people reading this stuff. It's not OK. It's really not OK.
Thank you for listening. And for caring enough to read this blog, and those of so many other exhausted, deeply loving autistic folk.
But still we have books being marketed which portray us in horrific ways, based on flawed research from the 1990s or early 2000s.
Back then, they had found hardly any autistic adults at all.
There has been no path to diagnosis for most of us until the last few years. There are huge waiting lists for diagnosis. We have still not found everyone. We are only just realising that about half of autistic people are female.
In, say, 2003, there were perhaps 1 in 50 autistic people discovered. The only ones who had been discovered were those whose behaviour was so extraordinary that they had been totally outrageously obvious. Especially the women who were discovered back then. So extraordinary different from 'normal autism' that they actually got noticed. Thing is, autism is an invisible disability. You can't see it. That's how unremarkable it is, normally.
So, who got diagnosed, back in 2003? Often people with multiple conditions, often with mental health conditions or personality disorders as well as autism. Perhaps those who weren't autistic at all, but had sociopathic conditions. It was common back them to imagine that autistic people were incapable of love and empathy. That's been debunked, thoroughly. Thus, we found only the outliers, those who were autistic-and-something-else.
An example? A brilliant idea, back in the early 2000s, of asking mostly people who were in for marriage guidance whether their autistic partner was well behaved.
Guess what.
Some of them sometimes weren't.
That's why they were in marriage guidance counselling.
And still....still, we have people who are reading and believing that such research from that tiny sample in ancient times applies to all autistic people discovered since then.
When that happens, people are not reading about the wonderful gentle people who are the vast majority. Not the majority of us whose behaviour never gets more extreme than going non-verbal and leaving a room quietly. Not the loving partners, the caring parents, the fab quirky friends. Just something based on that kind of ancient bit of flawed research.
This is 2015. We know better. There are so many who are truly ashamed that they produced such shocking things about the supposed 'normal' behaviour of autistic adults.
All we can do, as autistic responsible gentle, caring individuals is implore people to check what they are offering for sale. Check whether it matches current research. And if it does not, please pull it off your shelves. Real people get hurt with this stuff. They lose their jobs. They lose the trust of others. They live lonely, awful lives. They are pre-judged and pre-hated through people reading this stuff. It's not OK. It's really not OK.
Thank you for listening. And for caring enough to read this blog, and those of so many other exhausted, deeply loving autistic folk.
Thursday, 19 November 2015
Autism and Faceblindness
Most autistic people have difficulty identifying who's who, in some situations. We process faces differently. Some of us are 'faceblind'. We can't tell who's who by looking at their faces.
This is my view of a group of my friends. I've known them for years. Their faces are a blur. The part of my brain that looks at faces...and decides who it is....doesn't work well.
This is my view of a group of my friends. I've known them for years. Their faces are a blur. The part of my brain that looks at faces...and decides who it is....doesn't work well.
I work out who's who by looking at hair colour and style. Spectacles? Beard? Build, clothing, way of walking, way of talking. Context of who they are with and what setting this is. Anything but faces.
It's really awkward, because most other people know that if you walk straight past someone, it must be because you are deliberately ignoring them.
If you greet a good friend, it is supposed to be with huge enthusiasm. Raised eyebrows of delight, huge voice tone, probably hugs and kisses. But we might not do that. Why? Because perhaps we are not sure it's them. Plus, our body language is naturally different. Plus, if we make eye contact, it often actually stops us hearing you. Different brain wiring.
So easy for people to misinterpret our confusion about who's who as anger, and our walking-past as rudeness.
No wonder there are so many horrible, dehumanising, 'othering' myths about autistic people.
It really helps to say who you are. Even if that seems obvious. Name labels can really help, but only if someone is close enough to read it. Especially if you have just changed your hairstyle or hair colour. Especially if you are wearing glasses, when we're used to seeing you without them. Especially if you are wearing radically different clothing styles to your usual choices. Especially if you are one of a load of people wearing similar uniforms (staff dress code etc).
Otherwise, please don't take offence at any social communication oops situations that happen between autistic and nonautistic people. It's not personal. It never was.
Thank you for reading.
Sunday, 8 November 2015
Autism and Negative Labels
As a professional autism consultant for more than 20 years, and someone who is also autistic, I get to work with huge numbers of autistic individuals and their families.
I also get to hear and read a lot about autism.
Most of it is good. Some of it is not so good.
Many fellow professionals are wonderful. Positive, enabling, caring, fabulous.
Occasionally, a professional will allege something mysterious. One of the repeating myths is that 'all autistic people are dangerous'. Or words to that general effect. If this myth is going to appear, it tends to be from someone whose job it is to solve really complex situations around autism. I do think they believe that it is true. Is it? No.
Let us look at how this myth happened.
First of all, for more than 20 years, we have had the wrong set of diagnostic questions. We know this now. We were missing out perhaps half the autistic population - the girls and women. The questions were designed to spot the males, or females who thought in a really male way. Ooops.
So, nearly all the research was focusing on only 50% of autistic people, yes? No.
We were also not spotting nearly all the autistic people who sat quietly and behaved well.
When a colleague of mine did an autism test of thousands of pupils in schools, they were pretty confident that the teaching staff and specialists had found most of the autistic young people. They had not. There were any number of children who were autistic, but they were quiet and well behaved. No-one had therefore struggled through the system to get a diagnosis for them. Never found, never researched, never included in studies. Just sitting there in the classrooms, terrified, learning little, but in a really quiet well behaved way.
So, we missed nearly all the girls...and nearly all the autistic individuals who are quieter and well behaved. Is that it? No.
Who else did we miss? Nearly all the adults. Pretty much everyone from age 18 up.
What did we have left? The 'lively boys'. Those who have autism and whose behaviour was very noticeable indeed. Often also with a learning difficulty, perhaps with oppositional behaviour conditions as well, etc. And the occasional 'lively' girl who had other conditions as well, often a more severe learning difficulty and others such as severe anxiety, OCD, etc.
On this tiny population of 'lively boys' and occasional 'extreme outlier girls', we have based some 94% of our research on autism.
It's a bit like basing all research on females by going into a remand centre for women and basing the study just on the women there.
It's no wonder we've misunderstood this mostly lovely, gentle, generous, caring population of people, quietly getting on with our eccentric and baffled lives.
It's no wonder our passionate interests in topics are misdescribed as 'obsessions'. ["My non-autistic lad kicks a football against a wall for three hours - that's him training to be striker for Man U...whereas your autistic lad does his hobby for three hours and that's him 'being obsessive' and 'needing an intervention to direct him'. You must be a bad parent.]
It's no wonder our need for retreat - so that our brains don't literally overheat in sensory nightmare situations - is seen as 'defiance'.
It's no wonder our anxiety about pain and very real loneliness is seen as us being 'attention seeking'.
We have perhaps all been judged as if we are young lads with a variety of very visible and complex distress behaviours.
So, almost everything so far has been based on a tiny group of the entire autistic population. We're nowhere near researching autism itself as a whole.
Professionals working on the 'helping parents with particularly difficult situations' stuff? They see a lot of autistic young people with particularly difficult distress behaviour. That is exactly why that parent brought that particular child to them. That child does not represent all autistic people. But the temptation a very few professionals have is to stand up in front of groups - and announce that all autistic people of all ages therefore behave in eek ways, because the young people they see in their clinic do. Well, no.
So, what is a typical autistic person actually like? Instead of bringing to mind that 'lively boy', perhaps imagine a woman, somewhere in her 30s to 60s. We're that quiet organist, that careful artist, that thoughtful scientist, that diligent catering person. We're the craftsperson who spent a year creating that masterpiece, we're the trainer that tells you about autism from a personal perspective. We're Mums, charity workers on a quest for justice, faith leaders. We found a way to struggle through enough obstacles to do those things. Quietly, quirkily, mourning the loss of friendships we'd love to have had the skills to keep. Exhausted from trying to access sensory-nightmare buildings. But there we are. Right next to you. Unseen, unrecorded, unremarked-upon. Often not even believed when we say we have a diagnosis.
Our lives aren't made easy for us. We struggle with parts of it, desperate to find support and services, understanding and friendships. Autism has social, routine literal-understanding and sensory difficulties. Those mean we have to work extra hard to find ways round those things. If we are stuck in busy, noisy places for too long, our brain wiring takes in too much information and overheats. It then tries to escape the pain. Or switches itself off to cool down. So, the vast majority of us simply go home early from things. Or go very quiet. That's 'typical autism'. About as spectacular as a non-spectacular thing, to look at.
It's not made easier by professionals who announce blithely that we're dangerous, or that the lives of all parents are ruined by our presence. We are no more likely to be dangerous than anyone else, as a whole population. We are no more likely to ruin the life of a parent than any other child, as a whole population. I've lost track of the number of parents who have come up to me over the last 20 years and said how much their young autistic person has given to their lives. How much they are loved. How much they are a blessing. How much they desperately wished they had not judged them just on that more difficult bit - the bit when they didn't understand autism.
Yes, parents need good advice, good support, good services. So does every person who is autistic. Some young autistic people do also have other behavioural conditions that also need a lot of support. We absolutely must make sure that families and young people have what they need to be able to lead a good life. I fight hard every day to get better laws, better services for us all. I've brought up a child who is autistic, and I walked that path. No, not 'mild aspergers' (whatever that is). Autistic. Autistic, ridiculously strong, and very very fast on his feet. And, you know what, 23 years later, he is the most marvellous person I know. Kind, caring, responsible, thoughtful. Works with me on training sessions. If I had based my experience of 'autistic people' on his first few years, I would have missed the whole picture. Looking back, any 'challenging behaviour' was him telling me, non-verbally, that I had misunderstood something that was causing him pain. And I had.
We need research that looks for what we offer. We need research that stops using negative language. We need studies to stop categorising our every passionate interest as 'obsession' and our every sensible coping strategy as 'defiance' or as 'maladaptive behaviour'. We need research that stops suggesting we are a disaster for families. We need research that looks at the positives. We need research that examines autism itself, not 'autism plus learning disability plus speech/language condition plus half a dozen other things'....and then declares all of those are 'autism'. They are not.
So, what of the positives? Ten times more accurate than others? Honesty? Integrity? Passionate expertise in topics? Creativity? Do we hear enough of these? Do we even look for them?
We can understand what people say. If we are told that we are a dangerous disaster, year after year, is it any wonder that we end up with depression, anxiety and a host of other things? Wouldn't you? Is it any wonder that employers back away from hiring us, with a few professionals wandering about telling everyone how we all need constant care and supervision to stop us behaving dangerously? Some might. Most of us do not. Same as any other population of people. Want to know how many lawyers, accountants and surveyors are autistic? What about engineers? Architects? Computer professionals? We've not even begun to find autistic adults. Not really.
I am honoured to be amongst the most wonderful autistic friends and family, colleagues and employees, from every part of the autism spectrum and of all ages. Verbal, non-verbal, male, female, LGBT+, from different cultures and faiths. Every one is like a precious and beautiful jewel, much loved and valued. All deserve a life where we can be safe, enabled and contributing. Let's work towards that future together.
I also get to hear and read a lot about autism.
Most of it is good. Some of it is not so good.
Many fellow professionals are wonderful. Positive, enabling, caring, fabulous.
Occasionally, a professional will allege something mysterious. One of the repeating myths is that 'all autistic people are dangerous'. Or words to that general effect. If this myth is going to appear, it tends to be from someone whose job it is to solve really complex situations around autism. I do think they believe that it is true. Is it? No.
Let us look at how this myth happened.
First of all, for more than 20 years, we have had the wrong set of diagnostic questions. We know this now. We were missing out perhaps half the autistic population - the girls and women. The questions were designed to spot the males, or females who thought in a really male way. Ooops.
So, nearly all the research was focusing on only 50% of autistic people, yes? No.
We were also not spotting nearly all the autistic people who sat quietly and behaved well.
When a colleague of mine did an autism test of thousands of pupils in schools, they were pretty confident that the teaching staff and specialists had found most of the autistic young people. They had not. There were any number of children who were autistic, but they were quiet and well behaved. No-one had therefore struggled through the system to get a diagnosis for them. Never found, never researched, never included in studies. Just sitting there in the classrooms, terrified, learning little, but in a really quiet well behaved way.
So, we missed nearly all the girls...and nearly all the autistic individuals who are quieter and well behaved. Is that it? No.
Who else did we miss? Nearly all the adults. Pretty much everyone from age 18 up.
What did we have left? The 'lively boys'. Those who have autism and whose behaviour was very noticeable indeed. Often also with a learning difficulty, perhaps with oppositional behaviour conditions as well, etc. And the occasional 'lively' girl who had other conditions as well, often a more severe learning difficulty and others such as severe anxiety, OCD, etc.
On this tiny population of 'lively boys' and occasional 'extreme outlier girls', we have based some 94% of our research on autism.
It's a bit like basing all research on females by going into a remand centre for women and basing the study just on the women there.
It's no wonder we've misunderstood this mostly lovely, gentle, generous, caring population of people, quietly getting on with our eccentric and baffled lives.
It's no wonder our passionate interests in topics are misdescribed as 'obsessions'. ["My non-autistic lad kicks a football against a wall for three hours - that's him training to be striker for Man U...whereas your autistic lad does his hobby for three hours and that's him 'being obsessive' and 'needing an intervention to direct him'. You must be a bad parent.]
It's no wonder our need for retreat - so that our brains don't literally overheat in sensory nightmare situations - is seen as 'defiance'.
It's no wonder our anxiety about pain and very real loneliness is seen as us being 'attention seeking'.
We have perhaps all been judged as if we are young lads with a variety of very visible and complex distress behaviours.
So, almost everything so far has been based on a tiny group of the entire autistic population. We're nowhere near researching autism itself as a whole.
Professionals working on the 'helping parents with particularly difficult situations' stuff? They see a lot of autistic young people with particularly difficult distress behaviour. That is exactly why that parent brought that particular child to them. That child does not represent all autistic people. But the temptation a very few professionals have is to stand up in front of groups - and announce that all autistic people of all ages therefore behave in eek ways, because the young people they see in their clinic do. Well, no.
So, what is a typical autistic person actually like? Instead of bringing to mind that 'lively boy', perhaps imagine a woman, somewhere in her 30s to 60s. We're that quiet organist, that careful artist, that thoughtful scientist, that diligent catering person. We're the craftsperson who spent a year creating that masterpiece, we're the trainer that tells you about autism from a personal perspective. We're Mums, charity workers on a quest for justice, faith leaders. We found a way to struggle through enough obstacles to do those things. Quietly, quirkily, mourning the loss of friendships we'd love to have had the skills to keep. Exhausted from trying to access sensory-nightmare buildings. But there we are. Right next to you. Unseen, unrecorded, unremarked-upon. Often not even believed when we say we have a diagnosis.
Our lives aren't made easy for us. We struggle with parts of it, desperate to find support and services, understanding and friendships. Autism has social, routine literal-understanding and sensory difficulties. Those mean we have to work extra hard to find ways round those things. If we are stuck in busy, noisy places for too long, our brain wiring takes in too much information and overheats. It then tries to escape the pain. Or switches itself off to cool down. So, the vast majority of us simply go home early from things. Or go very quiet. That's 'typical autism'. About as spectacular as a non-spectacular thing, to look at.
It's not made easier by professionals who announce blithely that we're dangerous, or that the lives of all parents are ruined by our presence. We are no more likely to be dangerous than anyone else, as a whole population. We are no more likely to ruin the life of a parent than any other child, as a whole population. I've lost track of the number of parents who have come up to me over the last 20 years and said how much their young autistic person has given to their lives. How much they are loved. How much they are a blessing. How much they desperately wished they had not judged them just on that more difficult bit - the bit when they didn't understand autism.
Yes, parents need good advice, good support, good services. So does every person who is autistic. Some young autistic people do also have other behavioural conditions that also need a lot of support. We absolutely must make sure that families and young people have what they need to be able to lead a good life. I fight hard every day to get better laws, better services for us all. I've brought up a child who is autistic, and I walked that path. No, not 'mild aspergers' (whatever that is). Autistic. Autistic, ridiculously strong, and very very fast on his feet. And, you know what, 23 years later, he is the most marvellous person I know. Kind, caring, responsible, thoughtful. Works with me on training sessions. If I had based my experience of 'autistic people' on his first few years, I would have missed the whole picture. Looking back, any 'challenging behaviour' was him telling me, non-verbally, that I had misunderstood something that was causing him pain. And I had.
We need research that looks for what we offer. We need research that stops using negative language. We need studies to stop categorising our every passionate interest as 'obsession' and our every sensible coping strategy as 'defiance' or as 'maladaptive behaviour'. We need research that stops suggesting we are a disaster for families. We need research that looks at the positives. We need research that examines autism itself, not 'autism plus learning disability plus speech/language condition plus half a dozen other things'....and then declares all of those are 'autism'. They are not.
So, what of the positives? Ten times more accurate than others? Honesty? Integrity? Passionate expertise in topics? Creativity? Do we hear enough of these? Do we even look for them?
We can understand what people say. If we are told that we are a dangerous disaster, year after year, is it any wonder that we end up with depression, anxiety and a host of other things? Wouldn't you? Is it any wonder that employers back away from hiring us, with a few professionals wandering about telling everyone how we all need constant care and supervision to stop us behaving dangerously? Some might. Most of us do not. Same as any other population of people. Want to know how many lawyers, accountants and surveyors are autistic? What about engineers? Architects? Computer professionals? We've not even begun to find autistic adults. Not really.
I am honoured to be amongst the most wonderful autistic friends and family, colleagues and employees, from every part of the autism spectrum and of all ages. Verbal, non-verbal, male, female, LGBT+, from different cultures and faiths. Every one is like a precious and beautiful jewel, much loved and valued. All deserve a life where we can be safe, enabled and contributing. Let's work towards that future together.