5 ms·

What does "autism" even mean today? I've heard it used to describe everything from awkward introverts with technical interests, to kids who are nearly mute with

by nether 12y ago

What does "autism" even mean today? I've heard it used to describe everything from awkward introverts with technical interests, to kids who are nearly mute with speech disabilities. Do anti-vaxers think they're saving their kids from becoming software engineers?

DanBC 12y ago
http://www.cdc.gov/ncbddd/autism/hcp-dsm.html http://www.cdc.gov/ncbddd/autism/hcp-dsm.html http://www.autism.org.uk/labels http://www.autism.org.uk/labels
- cubano 12y ago
  Diagnostic Criteria for 299.00 Autism Spectrum Disorder Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text): !.Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions. 2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication. 3. Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers I am 50yo, am a struggling recovering addict, and I totally suffer deeply from all 3 of these criteria and have for most of my life... No one ever mentioned the word autism to me, and I've been to two high quality, long-term impatient treatment centers in my life. I suffer from these to this day, and can't help but wonder how much of my addiction issues are directly related to them. It feels to me, looking at the list through tear-clouded eyes, that almost all of them are.
  - jat850 12y ago
    Your last sentence was heart-breaking. Whether or not the list applies to you - whatever you've gone through - and whether you are somewhere along that autistic spectrum - none of them define you on their own. You are not the sum of checkboxes on a list. You're a person who has survived a series of challenges. Keep surviving and keep being a person, not a count of checkboxes.
  - falcolas 12y ago
    It's autism by that definition when those symptoms interfere with your daily life. Otherwise it's called being human. That said, not all psychiatrists are created equal, and some of them suffer from the same biases as the rest of us. Try talking to an autism specialist.
    - mgkimsal 12y ago
      > interfere with your daily life If it's all you've ever known, it just is your daily life. How would you know any different?
      - falcolas 12y ago
        That's where you get an impartial third party involved. They can tell if you are indeed outside the standard deviation for the population, and help you identify if and how to get back up to par.
    - gizmo686 12y ago
      It is autism regardless of it interferes with your daily life. The decision if you want to treat it or not (should) depend on if it interferes with your daily life.
      - falcolas 12y ago
        Not necessarily. If you ask 100 people if they have ever encountered these issues, all 100 will say yes. It's those whose lives are negatively impacted by these issues outside the norm who get the diagnosis and need outside help.
bshimmin 12y ago
I share your frustration. Autism, Asperger's Syndrome, "on the spectrum" - these words and phrases all seem to mean precisely whatever the person saying them wishes them to mean, from a pseudo-sympathetic acknowledgement of someone's problems to a cutting dismissal of behaviour they find unpalatable or challenging; and all delivered, of course, without any clinical frame of reference. I miss the days when people could just be shy or awkward or irritable or even narcissistic without it eliciting an armchair diagnosis.
- laumars 12y ago
  I think you're missing the point of what "the spectrum" is. Let's take another example, dyslexia. Some people suffer considerably worse than others; and some people's dyslexia is so mild that it might never be formally diagnosed. The same is true for autism. It's not a simple black-and-white case like someone having a broken leg. There's a gradual curve of disability that ranges from the "has to work a little harder to get along in every day life" to the extreme cases were 24/7 care is required. As to why it might appear that different people refer to different things when using these terms: that might just be because their reference points are from different points along the scale. Or in some cases, they might just be ignorant but vocal bloggers; but sadly this happens in all aspects of science (eg the anti-vaccination campaigners spouting shit doesn't mean that doctors don't know what they're talking about when they promote the use of vaccinations).
  - maratd 12y ago
    You're missing his point. At what point does a personality trait become a disorder?
    - DanBC 12y ago
      When it interferes (negatively) with your day to day life.
    - wvenable 12y ago
      When that trait interferes with your daily life. It's pretty common for people to be afraid of heights but if that fear interferes with getting a job, having relationships, enjoying everyday activities, then that's a disorder. The problem is lay people think of "autism" the way that creationists say evolution is a "theory". An awkward introvert with technical interests isn't going to be professionally diagnosed as autistic unless they have some pretty serious and defined symptoms. But that doesn't stop misinformed lay-person usage in everyday conversation.
Retric 12y ago
"Autism" is a 'spectrum disorder' so at the low end you have Asperger's which does not involve linguistic or cognitive development. Unfortunately, at the other end you get significant impairments in social communication and interaction across multiple contexts as well as significant cognitive impairments. Much confusion stems from the sliding scale definition as it can be difficult to separate (no vs mild), (mild vs moderate) , or (moderate vs significant) impairment.
doomrobo 12y ago
To just expand on some of the comments below, here is the relevant section from the DSM-V: http://docdroid.net/v7s2 http://docdroid.net/v7s2
wvenable 12y ago
Based on my experience with the system, most psychologists and doctors have a pretty firm idea of what is an is not autism even if it's a bit fuzzier for the rest of us.
- stared 12y ago
  They do have a firm idea, but not for a good reason. Doctors want to diagnose with yes or no (and it has its legal consequences). Yet, all current evidence shows that most likely there is no sharp transition between having autism and not. For some readings, look at papers at https://www.mendeley.com/groups/519371/asperger-syndrome-and-nerds/ https://www.mendeley.com/groups/519371/asperger-syndrome-and....
dbbolton 12y ago
To medical professionals, it does have a narrower definition, although it may seem vague. Here is the current ICD-10 description for childhood autism (F84.0): A type of pervasive developmental disorder that is defined by: (a) the presence of abnormal or impaired development that is manifest before the age of three years, and (b) the characteristic type of abnormal functioning in all the three areas of psychopathology: reciprocal social interaction, communication, and restricted, stereotyped, repetitive behaviour. In addition to these specific diagnostic features, a range of other nonspecific problems are common, such as phobias, sleeping and eating disturbances, temper tantrums, and (self-directed) aggression. http://apps.who.int/classifications/icd10/browse/2015/en#/F84.0 http://apps.who.int/classifications/icd10/browse/2015/en#/F8... More clinical info: * A disorder beginning in childhood. It is marked by the presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interest. Manifestations of the disorder vary greatly depending on the developmental level and chronological age of the individual. (dsm-iv) * A disorder characterized by marked impairments in social interaction and communication accompanied by a pattern of repetitive, stereotyped behaviors and activities. Developmental delays in social interaction and language surface prior to age 3 years. * Autism is a disorder that is usually diagnosed in early childhood. The main signs and symptoms of autism involve communication, social interactions and repetitive behaviors. Children with autism might have problems talking with you, or they might not look you in the eye when you talk to them. They may spend a lot of time putting things in order before they can pay attention, or they may say the same sentence again and again to calm themselves down. They often seem to be in their "own world."because people with autism can have very different features or symptoms, health care providers think of autism as a "spectrum" disorder. asperger syndrome is a milder version of the disorder.the cause of autism is not known. Autism lasts throughout a person's lifetime. There is no cure, but treatment can help. Treatments include behavior and communication therapies and medicines to control symptoms. Starting treatment as early as possible is important. nih: national institute of child health and human development * Disorder beginning in childhood marked by the presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interest; manifestations of the disorder vary greatly depending on the developmental level and chronological age of the individual. * Type of autism characterized by very early detection (< 30 months), social coldness, grossly impaired communication, and bizarre motor responses .http://www.icd10data.com/ICD10CM/Codes/F01-F99/F80-F89/F84-/F84.0 http://www.icd10data.com/ICD10CM/Codes/F01-F99/F80-F89/F84-/...
frozenport 12y ago
>>What does "autism" even mean today? Twelve years ago I volunteered to run summer camp activities with autistic kids. These kids had speech problems, and were constantly shaking, arms curled, their thoughts were aloof and obsessive. Yes there was a spectrum, but there was no doubt who was autistic. Newly found, or self diagnosed persons have clarity of mind that was completely absent from traditionally autistic persons. Frankly, if you can think straight you shouldn't be let off the hook. To speculate, perhaps our society is getting bad at instilling social behavior, as kids are increasingly isolated.
- Qantourisc 12y ago
  >> Frankly, if you can think straight you shouldn't be let off the hook. "Off the hook" as in not being labelled autistic, or ?
i14ng 12y ago
If you want to understand what the current research says it means, a great book is Rethinking Autism by Lynn Waterhouse; see my review of it at http://intellectualizing.net/2013/12/17/book-rethinking-autism-variation-and-complexity/ http://intellectualizing.net/2013/12/17/book-rethinking-auti... and the book on Amazon http://www.amazon.com/Rethinking-Autism-Complexity-Lynn-Waterhouse/dp/0124159613 http://www.amazon.com/Rethinking-Autism-Complexity-Lynn-Wate... The "disease" analogy is grossly misleading because it makes you think it's a single "thing" with a single cause; the right analogy is to a dimensional trait (such as intelligence), or traits perhaps (such as both social/communication skills on the one hand, and repetitive behaviors on the other). Then think about many different conditions resulting in this trait, much as many different conditions result in intellectual disability (or intellectual superiority). As with intellectual disability, autism diagnosis is more of a semi-arbitrary cutoff on the scale, rather than a binary yes-or-no. I say "semi-" arbitrary because diagnosis is an attempt to locate "where on this scale people start to really need extra help," but "arbitrary" because there isn't a strong scientific reason to put it at say 99.1 percentile vs 89.9 percentile. As with variation in intelligence, autism appears to be mostly genetic, with some impact from environment. The underlying condition resulting in autistic traits varies a lot. Sometimes, the condition may have other consequences, such as seizures or intellectual disability. Other times, the condition is best thought of as simply an extreme personality type, or something like that. Think about how various conditions resulting in ID can have accompanying issues (such as heart problems with Down syndrome). When someone says seizures or gut problems or whatever are "autism," that's like saying heart problems are intellectual disability. It doesn't make any sense. Autism is just the social/communication part, not everything that's up with someone. If you work in tech, you know a lot of autistic people, you just maybe don't know it, and they often do not know it themselves. Some of them are quite successful and not "obvious"; others are extremely clear to anyone who knows what to look for. But most of them probably do have some level of real disability, or if nothing else did have some level of it as children. For many of us the disability is primarily in personal life (friends, etc.), or historical childhood difficulty, and we are highly competent at work. I did not imagine that the diagnostic label applied to me until my son was diagnosed; but now I realize that it does apply or very nearly apply to me and several people I know (but I have no idea how to bring it up). Especially when they are having kids, I wish I'd known earlier that autism can be kind of the way my family is and many people I know are, and that it isn't always this big scary thing. The tech industry should be much better informed about autism given its prevalence in our coworkers and ourselves. Even the many who aren't diagnosable may be closer to autistic than to average. When those of us who are around 40 were kids, the diagnostic rate for autism was about 1/1000 and it's now a bit above 1/100, higher for boys. So the delta between those is the number of undiagnosed adults walking around today, who would have been diagnosed by modern criteria. It's a lot of people. Some number of those got a different dx in the past (such as intellectual disability), but the kinds who are now in tech probably got no diagnosis at all most of the time, other than "weird kid."
Dewie 12y ago
People have co-opted actual, real diagnosis and started to use them to describe things that are vaguely related/associated with that thing. People who are adamant about being tidy and organized "have OCD". People who are bummed out that their gf just broke up with them "have depression". People that are socially awkward "are autistic".

by nether 12y ago

DanBC 12y ago

http://www.cdc.gov/ncbddd/autism/hcp-dsm.html http://www.cdc.gov/ncbddd/autism/hcp-dsm.html http://www.autism.org.uk/labels http://www.autism.org.uk/labels

cubano 12y ago
Diagnostic Criteria for 299.00 Autism Spectrum Disorder Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text): !.Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions. 2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication. 3. Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers I am 50yo, am a struggling recovering addict, and I totally suffer deeply from all 3 of these criteria and have for most of my life... No one ever mentioned the word autism to me, and I've been to two high quality, long-term impatient treatment centers in my life. I suffer from these to this day, and can't help but wonder how much of my addiction issues are directly related to them. It feels to me, looking at the list through tear-clouded eyes, that almost all of them are.
- jat850 12y ago
  Your last sentence was heart-breaking. Whether or not the list applies to you - whatever you've gone through - and whether you are somewhere along that autistic spectrum - none of them define you on their own. You are not the sum of checkboxes on a list. You're a person who has survived a series of challenges. Keep surviving and keep being a person, not a count of checkboxes.
- falcolas 12y ago
  It's autism by that definition when those symptoms interfere with your daily life. Otherwise it's called being human. That said, not all psychiatrists are created equal, and some of them suffer from the same biases as the rest of us. Try talking to an autism specialist.
  - mgkimsal 12y ago
    > interfere with your daily life If it's all you've ever known, it just is your daily life. How would you know any different?
    - falcolas 12y ago
      That's where you get an impartial third party involved. They can tell if you are indeed outside the standard deviation for the population, and help you identify if and how to get back up to par.
  - gizmo686 12y ago
    It is autism regardless of it interferes with your daily life. The decision if you want to treat it or not (should) depend on if it interferes with your daily life.
    - falcolas 12y ago
      Not necessarily. If you ask 100 people if they have ever encountered these issues, all 100 will say yes. It's those whose lives are negatively impacted by these issues outside the norm who get the diagnosis and need outside help.

bshimmin 12y ago

I share your frustration. Autism, Asperger's Syndrome, "on the spectrum" - these words and phrases all seem to mean precisely whatever the person saying them wishes them to mean, from a pseudo-sympathetic acknowledgement of someone's problems to a cutting dismissal of behaviour they find unpalatable or challenging; and all delivered, of course, without any clinical frame of reference. I miss the days when people could just be shy or awkward or irritable or even narcissistic without it eliciting an armchair diagnosis.

laumars 12y ago
I think you're missing the point of what "the spectrum" is. Let's take another example, dyslexia. Some people suffer considerably worse than others; and some people's dyslexia is so mild that it might never be formally diagnosed. The same is true for autism. It's not a simple black-and-white case like someone having a broken leg. There's a gradual curve of disability that ranges from the "has to work a little harder to get along in every day life" to the extreme cases were 24/7 care is required. As to why it might appear that different people refer to different things when using these terms: that might just be because their reference points are from different points along the scale. Or in some cases, they might just be ignorant but vocal bloggers; but sadly this happens in all aspects of science (eg the anti-vaccination campaigners spouting shit doesn't mean that doctors don't know what they're talking about when they promote the use of vaccinations).
- maratd 12y ago
  You're missing his point. At what point does a personality trait become a disorder?
  - DanBC 12y ago
    When it interferes (negatively) with your day to day life.
  - wvenable 12y ago
    When that trait interferes with your daily life. It's pretty common for people to be afraid of heights but if that fear interferes with getting a job, having relationships, enjoying everyday activities, then that's a disorder. The problem is lay people think of "autism" the way that creationists say evolution is a "theory". An awkward introvert with technical interests isn't going to be professionally diagnosed as autistic unless they have some pretty serious and defined symptoms. But that doesn't stop misinformed lay-person usage in everyday conversation.

Retric 12y ago

"Autism" is a 'spectrum disorder' so at the low end you have Asperger's which does not involve linguistic or cognitive development. Unfortunately, at the other end you get significant impairments in social communication and interaction across multiple contexts as well as significant cognitive impairments. Much confusion stems from the sliding scale definition as it can be difficult to separate (no vs mild), (mild vs moderate) , or (moderate vs significant) impairment.

doomrobo 12y ago

To just expand on some of the comments below, here is the relevant section from the DSM-V: http://docdroid.net/v7s2 http://docdroid.net/v7s2

wvenable 12y ago

Based on my experience with the system, most psychologists and doctors have a pretty firm idea of what is an is not autism even if it's a bit fuzzier for the rest of us.

stared 12y ago
They do have a firm idea, but not for a good reason. Doctors want to diagnose with yes or no (and it has its legal consequences). Yet, all current evidence shows that most likely there is no sharp transition between having autism and not. For some readings, look at papers at https://www.mendeley.com/groups/519371/asperger-syndrome-and-nerds/ https://www.mendeley.com/groups/519371/asperger-syndrome-and....

dbbolton 12y ago

To medical professionals, it does have a narrower definition, although it may seem vague. Here is the current ICD-10 description for childhood autism (F84.0): A type of pervasive developmental disorder that is defined by: (a) the presence of abnormal or impaired development that is manifest before the age of three years, and (b) the characteristic type of abnormal functioning in all the three areas of psychopathology: reciprocal social interaction, communication, and restricted, stereotyped, repetitive behaviour. In addition to these specific diagnostic features, a range of other nonspecific problems are common, such as phobias, sleeping and eating disturbances, temper tantrums, and (self-directed) aggression. http://apps.who.int/classifications/icd10/browse/2015/en#/F84.0 http://apps.who.int/classifications/icd10/browse/2015/en#/F8... More clinical info: * A disorder beginning in childhood. It is marked by the presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interest. Manifestations of the disorder vary greatly depending on the developmental level and chronological age of the individual. (dsm-iv) * A disorder characterized by marked impairments in social interaction and communication accompanied by a pattern of repetitive, stereotyped behaviors and activities. Developmental delays in social interaction and language surface prior to age 3 years. * Autism is a disorder that is usually diagnosed in early childhood. The main signs and symptoms of autism involve communication, social interactions and repetitive behaviors. Children with autism might have problems talking with you, or they might not look you in the eye when you talk to them. They may spend a lot of time putting things in order before they can pay attention, or they may say the same sentence again and again to calm themselves down. They often seem to be in their "own world."because people with autism can have very different features or symptoms, health care providers think of autism as a "spectrum" disorder. asperger syndrome is a milder version of the disorder.the cause of autism is not known. Autism lasts throughout a person's lifetime. There is no cure, but treatment can help. Treatments include behavior and communication therapies and medicines to control symptoms. Starting treatment as early as possible is important. nih: national institute of child health and human development * Disorder beginning in childhood marked by the presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interest; manifestations of the disorder vary greatly depending on the developmental level and chronological age of the individual. * Type of autism characterized by very early detection (< 30 months), social coldness, grossly impaired communication, and bizarre motor responses .http://www.icd10data.com/ICD10CM/Codes/F01-F99/F80-F89/F84-/F84.0 http://www.icd10data.com/ICD10CM/Codes/F01-F99/F80-F89/F84-/...

frozenport 12y ago

>>What does "autism" even mean today? Twelve years ago I volunteered to run summer camp activities with autistic kids. These kids had speech problems, and were constantly shaking, arms curled, their thoughts were aloof and obsessive. Yes there was a spectrum, but there was no doubt who was autistic. Newly found, or self diagnosed persons have clarity of mind that was completely absent from traditionally autistic persons. Frankly, if you can think straight you shouldn't be let off the hook. To speculate, perhaps our society is getting bad at instilling social behavior, as kids are increasingly isolated.

Qantourisc 12y ago
>> Frankly, if you can think straight you shouldn't be let off the hook. "Off the hook" as in not being labelled autistic, or ?

i14ng 12y ago

If you want to understand what the current research says it means, a great book is Rethinking Autism by Lynn Waterhouse; see my review of it at http://intellectualizing.net/2013/12/17/book-rethinking-autism-variation-and-complexity/ http://intellectualizing.net/2013/12/17/book-rethinking-auti... and the book on Amazon http://www.amazon.com/Rethinking-Autism-Complexity-Lynn-Waterhouse/dp/0124159613 http://www.amazon.com/Rethinking-Autism-Complexity-Lynn-Wate... The "disease" analogy is grossly misleading because it makes you think it's a single "thing" with a single cause; the right analogy is to a dimensional trait (such as intelligence), or traits perhaps (such as both social/communication skills on the one hand, and repetitive behaviors on the other). Then think about many different conditions resulting in this trait, much as many different conditions result in intellectual disability (or intellectual superiority). As with intellectual disability, autism diagnosis is more of a semi-arbitrary cutoff on the scale, rather than a binary yes-or-no. I say "semi-" arbitrary because diagnosis is an attempt to locate "where on this scale people start to really need extra help," but "arbitrary" because there isn't a strong scientific reason to put it at say 99.1 percentile vs 89.9 percentile. As with variation in intelligence, autism appears to be mostly genetic, with some impact from environment. The underlying condition resulting in autistic traits varies a lot. Sometimes, the condition may have other consequences, such as seizures or intellectual disability. Other times, the condition is best thought of as simply an extreme personality type, or something like that. Think about how various conditions resulting in ID can have accompanying issues (such as heart problems with Down syndrome). When someone says seizures or gut problems or whatever are "autism," that's like saying heart problems are intellectual disability. It doesn't make any sense. Autism is just the social/communication part, not everything that's up with someone. If you work in tech, you know a lot of autistic people, you just maybe don't know it, and they often do not know it themselves. Some of them are quite successful and not "obvious"; others are extremely clear to anyone who knows what to look for. But most of them probably do have some level of real disability, or if nothing else did have some level of it as children. For many of us the disability is primarily in personal life (friends, etc.), or historical childhood difficulty, and we are highly competent at work. I did not imagine that the diagnostic label applied to me until my son was diagnosed; but now I realize that it does apply or very nearly apply to me and several people I know (but I have no idea how to bring it up). Especially when they are having kids, I wish I'd known earlier that autism can be kind of the way my family is and many people I know are, and that it isn't always this big scary thing. The tech industry should be much better informed about autism given its prevalence in our coworkers and ourselves. Even the many who aren't diagnosable may be closer to autistic than to average. When those of us who are around 40 were kids, the diagnostic rate for autism was about 1/1000 and it's now a bit above 1/100, higher for boys. So the delta between those is the number of undiagnosed adults walking around today, who would have been diagnosed by modern criteria. It's a lot of people. Some number of those got a different dx in the past (such as intellectual disability), but the kinds who are now in tech probably got no diagnosis at all most of the time, other than "weird kid."

Dewie 12y ago

People have co-opted actual, real diagnosis and started to use them to describe things that are vaguely related/associated with that thing. People who are adamant about being tidy and organized "have OCD". People who are bummed out that their gf just broke up with them "have depression". People that are socially awkward "are autistic".