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May. 25th, 2014 06:32 pm
The one absolute thing about autism
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nightengaleskndOK, listen up. I’m going to tell you the one absolute thing about autism and autistic people. This is true of all people accurately diagnosed with autism and all other autistic people who may not be diagnosed with autism or with anything, for that matter.
You ready?
Here it is.
All autistic people have some difficulty with social communication compared to what is expected for non-autistic people in their society. And all autistic people have some combination of strong interests, difficulty with transitions and routine changes, repetitive language or mannerisms and different sensory responses than expected of people in general. And these traits cause some impairment for the person when confronted with general expectations of people in their society.
An astute reader will note the above is essentially the diagnostic criteria for autism. And although I’ve social-modeled it a bit, it essentially is.
That’s because the only thing that can be definitely said about autistic people is that they meet the diagnostic criteria for autism.
This is true of autistic people who are immediately read as autistic, or at least, disabled, by most casual acquaintances, and of autistic people who are typically read as quirky or eccentric or different but not reliably read as autistic or disabled, even by people who know them reasonably well. It is true of autistic people who are college graduates and true of autistic people who need support for all activities of daily living. It’s true of the toddlers and it’s true of the grandmothers. It’s true of the ones who need formal supports and accommodations, and it’s true of those who have mostly found ways to support and modify for themselves. It’s true of people who meet every criteria with many examples under each, and people who only just meet the criteria and have only a few examples under the ones they meet. But it’s all that’s true.
Anything else is a generalization at best, a myth, a stereotype or an outright lie at worst.
That includes anything else said by autistic people, non-autistic parents of autistic people, and non-autistic “experts.” Anything.
And yes, there are things which often go along with autism, sometimes very often. Difficulty with verbal language, while not an absolute, is definitely common. And so informed conversations about autism should feel free to reference this, as a common thing. But not as a defining thing. Difficulty making eye contact is another common thing. But it isn’t, taken alone, a defining thing. Failure to recognize this can lead to failure to recognize autism in a person who makes typical eye contact but who absolutely meets autism criteria. And so on.
I’m reminded of a professional journal article I read once, not about autism but about cerebral palsy. The people doing the study had a group of children with cerebral palsy, and they needed to divide the group into sub-groups for analysis. So they decided to define a sub-group of children who had “severe cerebral palsy,” and they did so using the criteria of “IQ <50 and the inability to walk.” I read the article and then I threw the journal across the room and then the next day I came into work and started to tell people about what I had read, and one person said, “but they often go together.”
Well, they sure do. Of course, there are some other things in medicine that often go together. A fever often goes with a cough. It goes with a cough in pneumonia, and it goes with a cough in influenza, and it can go with a cough in sinusitis and RSV and lots of other conditions. Recognizing the association of fever and cough is a good, useful, medical pattern recognition thing to do. However, that does not mean that the authors of a study can redefine fever as “a temperature above 100.4 degrees Fahrenheit and the presence of a cough.” That’s what the authors were doing when they threw IQ into the definition of cerebral palsy.
That’s what often happens in conversations about autism.
I read and attend a lot of conversations about autism. Whether presentations as professional conferences, newspaper articles or posts on support message boards, I find many would greatly benefit from the use of qualifiers. Qualifiers are words such as “some,” “many” “may,” “can,” “often,” “in general.” When one is writing a telegram or otherwise paying by the character, space is of an essence, but in general, most people can find a way to fit qualifiers into things they are saying or writing. (See what I did there?)
And a few qualifiers can make all the difference between a true statement and a stereotype.
Consider, “people with autism think in pictures.”
I’ve seen it written. I’ve heard it said. I’ve encountered it from all sides of the trifecta, the autistics, parents and professionals. People with autism think in pictures. Pictures are better than words. Visual supports and schedules are the way to go.
And so it’s not inconceivable that a person who doesn’t know a lot about autism, but who knows they will soon encounter, or have encountered an autistic person, will read this or perhaps learn this in a training situation, and nod their head and say, “OK, good to know. I can use this” and then go on to apply it to the autistic person in their life. Perhaps they are a teacher or paraprofessional and perhaps the autistic person is a student.
And perhaps the student is a child with a learning profile similar to mine, where pictures are often very difficult to decipher. And the well-meaning person gives them a picture schedule and feels very good about the whole affair.
If everyone is very fortunate, the child has both the language skills and the self-advocacy skills to raise their hand, point to the picture and ask for help decoding it. If they are extremely lucky, the adult they ask doesn’t ridicule them for not being able to understand a simple picture and gives them a verbal explanation. Anyone who thinks this scenario is the likely one hasn’t spent a lot of time in a classroom setting.
Now let’s back the workshop up. Instead, the trainer says something like, “many people with autism are visual learners and do better with pictures than with language. However, some people have difficulty with pictures and do better with information presented verbally or in writing. It’s important to know the preferred learning style and interaction style of an individual autistic person when supporting them”
Admittedly, this takes more words, which means more space in print or more time in a lecture. But the return on investment, when the hypothetical teacher gives the student a schedule in a preferred format, or even verbally explains a schedule that outlines the day in both words and pictures, is quite high.
Let’s take another example, that of medical things associated with autism. I’m not talking about the vaccine theory, but other things that are within the realm of scientific reason based on current available evidence. We are increasingly finding genetic differences that are linked to a higher chance of having autism, and also increasingly aware of developmental and behavioral differences which run in families whether or not a specific single gene has been identified. 16p11.2 is an example of the latter. It is often called an “autism gene,” and has been found in autistic people at a much higher rate than found in the general population. About 1/100 autistic people had a deletion in this gene, in one study. However, a deeper look at people who have changes in the 16p11.2 gene, shows that while many have learning, behavioral or mental health challenges, the majority do not have autism. The majority of my patients who have a 16p11.2 deletion, and their relatives who have the same deletion, do not have autism. Studies suggest that between 2/3 and 4/5 of people with a 16p11.2 deletion do not have autism. So the genetics are complicated, even when there are identified genetic susceptibilities.
And there are a lot of people claiming that all autism is all genetic all the time. Often I see them stating this on message boards in response to people proposing vaccines or mercury or other non-causes. But there are definitely a subset of autistic people for whom genetics is probably not the answer or the primary answer. I’m probably one of these people (although I’m not discounting the BAP traits in my family from anxiety to baseball stat memorization) because I have another known brain-based thing. Former preemies are more likely to be autistic than babies born at term. In the smallest, earliest preemies, the chance is around 5%, and drops down to about 1% in the “late pre-term” group. These smallest, earliest preemies are more likely than the later ones to have brain-based differences, and probably not much more likely than the later ones to have genetic differences. Prenatal viruses that are known for changing brain structures, such as rubella and CMV, can be associated with a higher chance of having autism as well. The higher rate of seizures among autistics argues for some brain differences in some circumstances, and not all these circumstances are genetic.
In their great zeal to counter dangerous “cause” rhetoric, autistic CP clubbers, such as myself, and those whose autism comes with structural brain differences, are being advocated out of existence.
Finally, sadly, I draw our attention yet again to the conversations which inevitably follow a violent tragedy. Recently, a major media article has come out asserting a link between autism and aggression (although in fact, the study was more linking media suggestion of autism and aggression) and another tragedy has occurred where the perpetrator has been reported as being autistic. In the necessary zeal to counter such dangerous claims, I start reading comments that autistic only lash out when provoked, or that “my child is an angel.”
Again, while studies show autistic people are much more likely to be the victims of aggression than the perpetrators, and while autism is likely not the cause of committing a violent crime, autism is not an automatic shield against becoming a violent criminal. The assertion that autistics are not capable of such acts is less harmful than the assertion that autistics are at high risk of violence, but is harmful none-the-less.
Autism is not automatically demonizing, but neither is it universally angelifying. Autistics are more complicated than that. People are more complicated than that
I might add, the truth is more complicated than that.
Please, let’s start using qualifiers. Let’s start differentiating between things which are absolutely true, the small minority, and things which are true often enough for a mention. Let’s accept the fact that the truth is complicated, and so our message must often be complicated as well.
There are an awful lot of autistics, parents and professionals out there talking about autism, writing about autism, posting about autism. Many of us call ourselves advocates.
Let’s start advocating with the absolute truth, which is often not quite so absolute.
You ready?
Here it is.
All autistic people have some difficulty with social communication compared to what is expected for non-autistic people in their society. And all autistic people have some combination of strong interests, difficulty with transitions and routine changes, repetitive language or mannerisms and different sensory responses than expected of people in general. And these traits cause some impairment for the person when confronted with general expectations of people in their society.
An astute reader will note the above is essentially the diagnostic criteria for autism. And although I’ve social-modeled it a bit, it essentially is.
That’s because the only thing that can be definitely said about autistic people is that they meet the diagnostic criteria for autism.
This is true of autistic people who are immediately read as autistic, or at least, disabled, by most casual acquaintances, and of autistic people who are typically read as quirky or eccentric or different but not reliably read as autistic or disabled, even by people who know them reasonably well. It is true of autistic people who are college graduates and true of autistic people who need support for all activities of daily living. It’s true of the toddlers and it’s true of the grandmothers. It’s true of the ones who need formal supports and accommodations, and it’s true of those who have mostly found ways to support and modify for themselves. It’s true of people who meet every criteria with many examples under each, and people who only just meet the criteria and have only a few examples under the ones they meet. But it’s all that’s true.
Anything else is a generalization at best, a myth, a stereotype or an outright lie at worst.
That includes anything else said by autistic people, non-autistic parents of autistic people, and non-autistic “experts.” Anything.
And yes, there are things which often go along with autism, sometimes very often. Difficulty with verbal language, while not an absolute, is definitely common. And so informed conversations about autism should feel free to reference this, as a common thing. But not as a defining thing. Difficulty making eye contact is another common thing. But it isn’t, taken alone, a defining thing. Failure to recognize this can lead to failure to recognize autism in a person who makes typical eye contact but who absolutely meets autism criteria. And so on.
I’m reminded of a professional journal article I read once, not about autism but about cerebral palsy. The people doing the study had a group of children with cerebral palsy, and they needed to divide the group into sub-groups for analysis. So they decided to define a sub-group of children who had “severe cerebral palsy,” and they did so using the criteria of “IQ <50 and the inability to walk.” I read the article and then I threw the journal across the room and then the next day I came into work and started to tell people about what I had read, and one person said, “but they often go together.”
Well, they sure do. Of course, there are some other things in medicine that often go together. A fever often goes with a cough. It goes with a cough in pneumonia, and it goes with a cough in influenza, and it can go with a cough in sinusitis and RSV and lots of other conditions. Recognizing the association of fever and cough is a good, useful, medical pattern recognition thing to do. However, that does not mean that the authors of a study can redefine fever as “a temperature above 100.4 degrees Fahrenheit and the presence of a cough.” That’s what the authors were doing when they threw IQ into the definition of cerebral palsy.
That’s what often happens in conversations about autism.
I read and attend a lot of conversations about autism. Whether presentations as professional conferences, newspaper articles or posts on support message boards, I find many would greatly benefit from the use of qualifiers. Qualifiers are words such as “some,” “many” “may,” “can,” “often,” “in general.” When one is writing a telegram or otherwise paying by the character, space is of an essence, but in general, most people can find a way to fit qualifiers into things they are saying or writing. (See what I did there?)
And a few qualifiers can make all the difference between a true statement and a stereotype.
Consider, “people with autism think in pictures.”
I’ve seen it written. I’ve heard it said. I’ve encountered it from all sides of the trifecta, the autistics, parents and professionals. People with autism think in pictures. Pictures are better than words. Visual supports and schedules are the way to go.
And so it’s not inconceivable that a person who doesn’t know a lot about autism, but who knows they will soon encounter, or have encountered an autistic person, will read this or perhaps learn this in a training situation, and nod their head and say, “OK, good to know. I can use this” and then go on to apply it to the autistic person in their life. Perhaps they are a teacher or paraprofessional and perhaps the autistic person is a student.
And perhaps the student is a child with a learning profile similar to mine, where pictures are often very difficult to decipher. And the well-meaning person gives them a picture schedule and feels very good about the whole affair.
If everyone is very fortunate, the child has both the language skills and the self-advocacy skills to raise their hand, point to the picture and ask for help decoding it. If they are extremely lucky, the adult they ask doesn’t ridicule them for not being able to understand a simple picture and gives them a verbal explanation. Anyone who thinks this scenario is the likely one hasn’t spent a lot of time in a classroom setting.
Now let’s back the workshop up. Instead, the trainer says something like, “many people with autism are visual learners and do better with pictures than with language. However, some people have difficulty with pictures and do better with information presented verbally or in writing. It’s important to know the preferred learning style and interaction style of an individual autistic person when supporting them”
Admittedly, this takes more words, which means more space in print or more time in a lecture. But the return on investment, when the hypothetical teacher gives the student a schedule in a preferred format, or even verbally explains a schedule that outlines the day in both words and pictures, is quite high.
Let’s take another example, that of medical things associated with autism. I’m not talking about the vaccine theory, but other things that are within the realm of scientific reason based on current available evidence. We are increasingly finding genetic differences that are linked to a higher chance of having autism, and also increasingly aware of developmental and behavioral differences which run in families whether or not a specific single gene has been identified. 16p11.2 is an example of the latter. It is often called an “autism gene,” and has been found in autistic people at a much higher rate than found in the general population. About 1/100 autistic people had a deletion in this gene, in one study. However, a deeper look at people who have changes in the 16p11.2 gene, shows that while many have learning, behavioral or mental health challenges, the majority do not have autism. The majority of my patients who have a 16p11.2 deletion, and their relatives who have the same deletion, do not have autism. Studies suggest that between 2/3 and 4/5 of people with a 16p11.2 deletion do not have autism. So the genetics are complicated, even when there are identified genetic susceptibilities.
And there are a lot of people claiming that all autism is all genetic all the time. Often I see them stating this on message boards in response to people proposing vaccines or mercury or other non-causes. But there are definitely a subset of autistic people for whom genetics is probably not the answer or the primary answer. I’m probably one of these people (although I’m not discounting the BAP traits in my family from anxiety to baseball stat memorization) because I have another known brain-based thing. Former preemies are more likely to be autistic than babies born at term. In the smallest, earliest preemies, the chance is around 5%, and drops down to about 1% in the “late pre-term” group. These smallest, earliest preemies are more likely than the later ones to have brain-based differences, and probably not much more likely than the later ones to have genetic differences. Prenatal viruses that are known for changing brain structures, such as rubella and CMV, can be associated with a higher chance of having autism as well. The higher rate of seizures among autistics argues for some brain differences in some circumstances, and not all these circumstances are genetic.
In their great zeal to counter dangerous “cause” rhetoric, autistic CP clubbers, such as myself, and those whose autism comes with structural brain differences, are being advocated out of existence.
Finally, sadly, I draw our attention yet again to the conversations which inevitably follow a violent tragedy. Recently, a major media article has come out asserting a link between autism and aggression (although in fact, the study was more linking media suggestion of autism and aggression) and another tragedy has occurred where the perpetrator has been reported as being autistic. In the necessary zeal to counter such dangerous claims, I start reading comments that autistic only lash out when provoked, or that “my child is an angel.”
Again, while studies show autistic people are much more likely to be the victims of aggression than the perpetrators, and while autism is likely not the cause of committing a violent crime, autism is not an automatic shield against becoming a violent criminal. The assertion that autistics are not capable of such acts is less harmful than the assertion that autistics are at high risk of violence, but is harmful none-the-less.
Autism is not automatically demonizing, but neither is it universally angelifying. Autistics are more complicated than that. People are more complicated than that
I might add, the truth is more complicated than that.
Please, let’s start using qualifiers. Let’s start differentiating between things which are absolutely true, the small minority, and things which are true often enough for a mention. Let’s accept the fact that the truth is complicated, and so our message must often be complicated as well.
There are an awful lot of autistics, parents and professionals out there talking about autism, writing about autism, posting about autism. Many of us call ourselves advocates.
Let’s start advocating with the absolute truth, which is often not quite so absolute.
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Yeah. So lately I've been noticing how many parents comments fall roughly into either "my [autistic] child is an aggressive soulless demon who is aggressive without reason and who is ruining our life" or "my [autistic] child is a peaceful loving angel how dare they associate aggression with autism and by extension my angelic child." What I haven't done is cross-checked to see if these are the same parents. I actually suspect they aren't.
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