6 ms·

Myths about autism

46 points by williamhpark 11y ago

ap22213 11y ago
I only had time to skim, but is the first myth really false? When I was a kid in the 70s - 80s, I had never met another child with autistic like behavior. Yet, of my son's friends, two of them are clearly autistic (and diagnosed), and several of them seem on the spectrum (including my son). I also have several friends with autistic children. How could it be that it was just under diagnosed previously? On the other hand, my parents recall me having 'autistic like' behavior until I was 5 or so. In fact, I didn't speak until I was 3. I asked my mom about this, and she said she wasn't worried because she figured that I'd speak eventually. Such a strange attitude to me as a modern parent.
- seiji 11y ago
  but is the first myth really true? Does anybody take into account more modern business practices of putting tens of thousands of smart people in a small geographic area? That leads to smart people breeding with smart people which seems to be a known catalyst for spectrum disorders. Before the mid 1900s, we didn't have mass service/technical employment (read: companies requiring "smart" employees instead of interchangeable factory labor) or ease of global relocation on a whim. You'd grow up on a farm, meet someone from your town, then settle down in your own town, and the cycle would repeat for generations.
  - jerf 11y ago
    The problem with figuring out what causes autism is not the shortage of viable theories, but the abundance. Yes, that is a well known theory that is taken into account but isn't any easier to tease out from the mass of data than anything else.
  - VLM 11y ago
    There does exist a mythology that we were all hunter gatherers until the first internet bubble, however, Harvard was founded in 1636, I have an ancestor who was an English prof there in the early 1800s, ancestors who were "in the area" for the last 400 years. We should have plenty of data from other ivies vs nearby similar sized towns without higher ed.
- ocschwar 11y ago
  Well, if you have autistic traits, then however good you are at assessing other people's demeanor nowadays, you would probably not have been good at it as a child. So maybe you DID meet other children with the same traits.
- ocschwar 11y ago
  Well, if you have autistic traits, then however good you are at assessing other people's demeanor nowadays, you would probably not have been good at it as a child. So maybe you DID meet other children with the same traits.
- gnur 11y ago
  Apparently, diagnoses of autism has become much more valuable for parents. (at least in the Netherlands). If you don't have a the label autism, you'll have to pay for everything yourself, but with a diagnosis the (local) government will help you out with certain things. (like schooling) Something somewhat related, the diagnosis a child gets is highly dependent on the educational level of the mother. Higher educated mothers are more likely to have a child with Aspergers then "regular" autism. The cause is probably not genetic but more likely that a "smarter" mother will try to get a better (Aspergers) diagnosis then a mother with less intellect.
silverlight 11y ago
I was surprised to see that the most prevalent "myth" about Autism -- that is is caused by early childhood vaccinations -- wasn't mentioned. Especially since that myth is making the rounds again after Donald Trump stated it as fact during the last Republican Presidential Debate. EDIT: I was mistaken, it was mentioned. Bad reading on my part :-)
- Kenji 11y ago
  Especially because it actually was mentioned in the article :) EDIT: Hehe, no problem. I lost count of how many times I overlooked things in articles that I skimmed.
  - silverlight 11y ago
    Ah! You're right. Totally missed it in the paragraph under that photo. My mistake :-)
Kenji 11y ago
Myth #4: We’re just over-diagnosing quirky kids with a trendy disorder. I'm sorry but this is true. I know plenty of (diagnosed) autistic people and they seem to cope okayish with their daily lives. The real deal - and I've read heartbreaking articles about it - is when the (even grown up) autist cannot take a shower on his own, and when he is asked a question he is merely capable of repeating fragments of things he heard before, over and over again. No normal communication is possible. A severe disability. Mental disorders are massively overdiagnosed these days, it's a business with little backing of solid science, and I ask anyone who claims the opposite to show me solid evidence and research papers.
- danharaj 11y ago
  You also probably know plenty of depressed people who cope with their daily lives; that there are people who suffer from catatonic depression does not invalidate their depression. I don't think you know what you're talking about, which is confusing because you have expressed a very strong opinion about the subject.
  - Kenji 11y ago
    All I'm saying is that we pathologize people who could lead a normal, happy life. By pathologizing them, we reinforce the perception in them that something is wrong with them. Which in turn reinforces worries and social paralysis. A vicious cycle. Please be aware that almost all diagnoses of psychological disorders are entirely symptom-based and thus extremely subjective. The trend of giving young kids strong psychoactive drugs during one of the most important periods of brain-development is disgusting me.
    - overgryphon 11y ago
      Many people lead normal happy lives with a mental health diagnosis. Something is wrong with everyone. Putting a name to the common class of struggles you struggle with most can be empowering. It makes it easier to find resources more tailored to you, and connect with others that have similar experiences.
fecak 11y ago
The issue with articles that try to discuss "autism" as a whole tend to ignore that the wide spectrum of people diagnosed makes it impossible to generalize. The child in class who is considered quirky and exhibits a few rather harmless traits shares the same diagnosis as my child who is entirely non-verbal and exhibits self-injurious behavior. The difference between someone considered "high-functioning" and "low-functioning" is often dramatic. Until we separate the spectrum into a more distinct subset of disabilities (as well as abilities), the autism community will continue to be fractured into those who consider their autism a gift that want to "keep" their autism pitting themselves against the families of the most severely impacted who are advocating for those who often can't speak for themselves.
- hoopism 11y ago
  I know it's the huffingtonpost but this article speaks to that pretty well. http://www.huffingtonpost.com/bonnie-zampino/is-autism-the-real-public_b_8191918.html http://www.huffingtonpost.com/bonnie-zampino/is-autism-the-r...
  - MattSteelblade 11y ago
    Part 2: http://www.huffingtonpost.com/bonnie-zampino/my-son-has-the-kind-of-autism-no-one-talks-about----part-2_b_8230544.html http://www.huffingtonpost.com/bonnie-zampino/my-son-has-the-...
  - fecak 11y ago
    That article and a recent social media debate prompted the comment. The debate was with a well-educated adult woman saying she'd "rather have autism than $CURABLEDISEASE", and she referenced the adorable children of her friends that had an autism diagnosis that were delightful to be around. She recounted a recent conversation via communication device where a little girl expressed how she felt (and liked) her own autism and being different. I explained that autism didn't look like that in all cases, and if she wanted autism she'd have to take the autism of my child who at 11 isn't capable of these types of interactions and generally has a rough go of it. I think most people now realize how different the ends of the spectrum can be, but the high-functioning end of the spectrum sometimes engage with those advocating for the low-functioning end. If you like your autism, keep it - but those of us impacted by the "other" autism will keep advocating for our children. Separate diagnoses would help this tremendously.
hoopism 11y ago
I have first hand experience of raising a child with Autism and with ABA therapy. The myth element dealing with ABA is a bit strange. The first statement seems focused on the prohibitive nature due to the commitment. Then it points out the implementation as being a form of abuse and lastly hints of discrediting the practice on the whole. Not sure what part is myth here... I am not an expert but I know how it's worked for my kid and several other families. It's my understanding that Lovaas and early practitioners of ABA were much more strict in their approach. Children were made to sit for long periods through repetition and there was an element of "correcting" that could include a slap or stern language. From my understanding and experience this is just not the case anymore. ABA has adopted a lot of the methodology of other treatments such as floortime where the session is a play environment. There are discrete trials and it's still very data driven but it's structured into activities that the child (or adult) are motivated by. If ever my child was not enjoying their time or was being "abused" in any fashion we would be the first to stop the therapy. We've encountered a number of older adults who work with children who are horrified that we chose to go with ABA as treatment. Their views are largely based on decades old information of the implementation. We've had those same people sit in on sessions and by the end they are taking notes and asking questions about ABA. We do 20+ hours a week. It's intense but the intensity level is governed by my child's enthusiasm and willingness. If you have an ABA provider who is punishing, pushing or not creating a fun and loving atmosphere for your child then please speak with someone else (though I know this is not the case for vast majority of people).
- Amorymeltzer 11y ago
  Thanks for sharing your experience! Genuinely curious (since I know a bit about them) why you went/stayed with ABA if the main positives and advances were adopted from DIR Floortime, etc. Why not go with Floortime?
  - hoopism 11y ago
    We actually did both. We felt that a lot of what floortime included were things we were doing (based on reading a number of books)... and I mean that as a positive. While I appreciate the child directed nature I felt like the structure and data driven model provided a better framework for our daughter. She's very young and a lot of what we work on are super fundamental skills. ABA (at least our provider) has been very thoughtful about creating a plan that identifies her struggles and implements strategies that are tailored to her to build skills. We tried a lot of things and could see positives in all of them... so we ultimately decided to cherry pick what we like and help structure her program. ABA provided us the framework to measure what works and what we need to change. I encourage parents to try a few things and see what works for them.
autismjohndoe 11y ago
There are indeed a lot of myths about autism in the press, and they should be dispelled. Unfortunately Silberman doesn't really know what he's talking about, despite what are surely his best intentions. (He's a journalist, not a scientist.) Many people with autism diagnoses do lack empathy for others; it's part of the condition. Labeling that a "myth" is simply incorrect. We need more coverage of scientific journal articles, such as the many papers that point to cerebellar involvement in autism, which Silberman does not discuss at all. The lack of hard science in the debate makes it too easy for myths and vague superstition--even among doctors--to fill the gap. See https://medium.com/p/we-don-t-do-autism-d6de9d4f8913 https://medium.com/p/we-don-t-do-autism-d6de9d4f8913.
UhUhUhUh 11y ago
My take as a psychologist. Myth #1: It is partly a diagnosis issue but that will not be solved by waving a spectrum wild-card. Strictly all mental-health disorders are present in a normal state in the general population. That goes for mania, depression, oscillations between the two, lack of empathy, anxiety, and even psychosis (e.g. it would be very unhealthy to not be somewhat paranoid these days, dreams are necessary hallucinations). The inability to fluidly shift among these many ways of dealing with reality, following the circumstances is, in my own personal book, the problem. Past a certain degree of rigidity, that itself fosters behaviors, we have a problem and often the person is aware of that. That ties in with Myth #2. In my experience, it's not lack of empathy but a deficit in the ability to intuitively project into an other. A very large proportion of our interactions and behaviors rests on intuition and subconscious processing. I often compare autism to flying instruments. Try it and you'll very quickly get a clue of what it feels like to lack this intuitive processing. The sad and hard thing is that autistic people do suffer from that and are often driven crazy not by the autistic thing but by the, secondary, suffering. For adolescents. it's even worse: they fly instruments in a storm. Myth #3: So it really isn't about normalizing but about increasing flexibility. And reducing suffering is pretty much a pre-requisite towards that. Even in Aspies, this suffering is sometimes so great that it reminds me of homosexuals before the invention of the "coming out".

46 points by williamhpark 11y ago

I only had time to skim, but is the first myth really false? When I was a kid in the 70s - 80s, I had never met another child with autistic like behavior. Yet, of my son's friends, two of them are clearly autistic (and diagnosed), and several of them seem on the spectrum (including my son). I also have several friends with autistic children. How could it be that it was just under diagnosed previously? On the other hand, my parents recall me having 'autistic like' behavior until I was 5 or so. In fact, I didn't speak until I was 3. I asked my mom about this, and she said she wasn't worried because she figured that I'd speak eventually. Such a strange attitude to me as a modern parent.

seiji 11y ago
but is the first myth really true? Does anybody take into account more modern business practices of putting tens of thousands of smart people in a small geographic area? That leads to smart people breeding with smart people which seems to be a known catalyst for spectrum disorders. Before the mid 1900s, we didn't have mass service/technical employment (read: companies requiring "smart" employees instead of interchangeable factory labor) or ease of global relocation on a whim. You'd grow up on a farm, meet someone from your town, then settle down in your own town, and the cycle would repeat for generations.
- jerf 11y ago
  The problem with figuring out what causes autism is not the shortage of viable theories, but the abundance. Yes, that is a well known theory that is taken into account but isn't any easier to tease out from the mass of data than anything else.
- VLM 11y ago
  There does exist a mythology that we were all hunter gatherers until the first internet bubble, however, Harvard was founded in 1636, I have an ancestor who was an English prof there in the early 1800s, ancestors who were "in the area" for the last 400 years. We should have plenty of data from other ivies vs nearby similar sized towns without higher ed.
ocschwar 11y ago
Well, if you have autistic traits, then however good you are at assessing other people's demeanor nowadays, you would probably not have been good at it as a child. So maybe you DID meet other children with the same traits.
ocschwar 11y ago
Well, if you have autistic traits, then however good you are at assessing other people's demeanor nowadays, you would probably not have been good at it as a child. So maybe you DID meet other children with the same traits.
gnur 11y ago
Apparently, diagnoses of autism has become much more valuable for parents. (at least in the Netherlands). If you don't have a the label autism, you'll have to pay for everything yourself, but with a diagnosis the (local) government will help you out with certain things. (like schooling) Something somewhat related, the diagnosis a child gets is highly dependent on the educational level of the mother. Higher educated mothers are more likely to have a child with Aspergers then "regular" autism. The cause is probably not genetic but more likely that a "smarter" mother will try to get a better (Aspergers) diagnosis then a mother with less intellect.

silverlight 11y ago

I was surprised to see that the most prevalent "myth" about Autism -- that is is caused by early childhood vaccinations -- wasn't mentioned. Especially since that myth is making the rounds again after Donald Trump stated it as fact during the last Republican Presidential Debate. EDIT: I was mistaken, it was mentioned. Bad reading on my part :-)

Kenji 11y ago
Especially because it actually was mentioned in the article :) EDIT: Hehe, no problem. I lost count of how many times I overlooked things in articles that I skimmed.
- silverlight 11y ago
  Ah! You're right. Totally missed it in the paragraph under that photo. My mistake :-)

Kenji 11y ago

Myth #4: We’re just over-diagnosing quirky kids with a trendy disorder. I'm sorry but this is true. I know plenty of (diagnosed) autistic people and they seem to cope okayish with their daily lives. The real deal - and I've read heartbreaking articles about it - is when the (even grown up) autist cannot take a shower on his own, and when he is asked a question he is merely capable of repeating fragments of things he heard before, over and over again. No normal communication is possible. A severe disability. Mental disorders are massively overdiagnosed these days, it's a business with little backing of solid science, and I ask anyone who claims the opposite to show me solid evidence and research papers.

danharaj 11y ago
You also probably know plenty of depressed people who cope with their daily lives; that there are people who suffer from catatonic depression does not invalidate their depression. I don't think you know what you're talking about, which is confusing because you have expressed a very strong opinion about the subject.
- Kenji 11y ago
  All I'm saying is that we pathologize people who could lead a normal, happy life. By pathologizing them, we reinforce the perception in them that something is wrong with them. Which in turn reinforces worries and social paralysis. A vicious cycle. Please be aware that almost all diagnoses of psychological disorders are entirely symptom-based and thus extremely subjective. The trend of giving young kids strong psychoactive drugs during one of the most important periods of brain-development is disgusting me.
  - overgryphon 11y ago
    Many people lead normal happy lives with a mental health diagnosis. Something is wrong with everyone. Putting a name to the common class of struggles you struggle with most can be empowering. It makes it easier to find resources more tailored to you, and connect with others that have similar experiences.

fecak 11y ago

The issue with articles that try to discuss "autism" as a whole tend to ignore that the wide spectrum of people diagnosed makes it impossible to generalize. The child in class who is considered quirky and exhibits a few rather harmless traits shares the same diagnosis as my child who is entirely non-verbal and exhibits self-injurious behavior. The difference between someone considered "high-functioning" and "low-functioning" is often dramatic. Until we separate the spectrum into a more distinct subset of disabilities (as well as abilities), the autism community will continue to be fractured into those who consider their autism a gift that want to "keep" their autism pitting themselves against the families of the most severely impacted who are advocating for those who often can't speak for themselves.

hoopism 11y ago
I know it's the huffingtonpost but this article speaks to that pretty well. http://www.huffingtonpost.com/bonnie-zampino/is-autism-the-real-public_b_8191918.html http://www.huffingtonpost.com/bonnie-zampino/is-autism-the-r...
- MattSteelblade 11y ago
  Part 2: http://www.huffingtonpost.com/bonnie-zampino/my-son-has-the-kind-of-autism-no-one-talks-about----part-2_b_8230544.html http://www.huffingtonpost.com/bonnie-zampino/my-son-has-the-...
- fecak 11y ago
  That article and a recent social media debate prompted the comment. The debate was with a well-educated adult woman saying she'd "rather have autism than $CURABLEDISEASE", and she referenced the adorable children of her friends that had an autism diagnosis that were delightful to be around. She recounted a recent conversation via communication device where a little girl expressed how she felt (and liked) her own autism and being different. I explained that autism didn't look like that in all cases, and if she wanted autism she'd have to take the autism of my child who at 11 isn't capable of these types of interactions and generally has a rough go of it. I think most people now realize how different the ends of the spectrum can be, but the high-functioning end of the spectrum sometimes engage with those advocating for the low-functioning end. If you like your autism, keep it - but those of us impacted by the "other" autism will keep advocating for our children. Separate diagnoses would help this tremendously.

hoopism 11y ago

I have first hand experience of raising a child with Autism and with ABA therapy. The myth element dealing with ABA is a bit strange. The first statement seems focused on the prohibitive nature due to the commitment. Then it points out the implementation as being a form of abuse and lastly hints of discrediting the practice on the whole. Not sure what part is myth here... I am not an expert but I know how it's worked for my kid and several other families. It's my understanding that Lovaas and early practitioners of ABA were much more strict in their approach. Children were made to sit for long periods through repetition and there was an element of "correcting" that could include a slap or stern language. From my understanding and experience this is just not the case anymore. ABA has adopted a lot of the methodology of other treatments such as floortime where the session is a play environment. There are discrete trials and it's still very data driven but it's structured into activities that the child (or adult) are motivated by. If ever my child was not enjoying their time or was being "abused" in any fashion we would be the first to stop the therapy. We've encountered a number of older adults who work with children who are horrified that we chose to go with ABA as treatment. Their views are largely based on decades old information of the implementation. We've had those same people sit in on sessions and by the end they are taking notes and asking questions about ABA. We do 20+ hours a week. It's intense but the intensity level is governed by my child's enthusiasm and willingness. If you have an ABA provider who is punishing, pushing or not creating a fun and loving atmosphere for your child then please speak with someone else (though I know this is not the case for vast majority of people).

Amorymeltzer 11y ago
Thanks for sharing your experience! Genuinely curious (since I know a bit about them) why you went/stayed with ABA if the main positives and advances were adopted from DIR Floortime, etc. Why not go with Floortime?
- hoopism 11y ago
  We actually did both. We felt that a lot of what floortime included were things we were doing (based on reading a number of books)... and I mean that as a positive. While I appreciate the child directed nature I felt like the structure and data driven model provided a better framework for our daughter. She's very young and a lot of what we work on are super fundamental skills. ABA (at least our provider) has been very thoughtful about creating a plan that identifies her struggles and implements strategies that are tailored to her to build skills. We tried a lot of things and could see positives in all of them... so we ultimately decided to cherry pick what we like and help structure her program. ABA provided us the framework to measure what works and what we need to change. I encourage parents to try a few things and see what works for them.

autismjohndoe 11y ago

There are indeed a lot of myths about autism in the press, and they should be dispelled. Unfortunately Silberman doesn't really know what he's talking about, despite what are surely his best intentions. (He's a journalist, not a scientist.) Many people with autism diagnoses do lack empathy for others; it's part of the condition. Labeling that a "myth" is simply incorrect. We need more coverage of scientific journal articles, such as the many papers that point to cerebellar involvement in autism, which Silberman does not discuss at all. The lack of hard science in the debate makes it too easy for myths and vague superstition--even among doctors--to fill the gap. See https://medium.com/p/we-don-t-do-autism-d6de9d4f8913 https://medium.com/p/we-don-t-do-autism-d6de9d4f8913.

UhUhUhUh 11y ago

My take as a psychologist. Myth #1: It is partly a diagnosis issue but that will not be solved by waving a spectrum wild-card. Strictly all mental-health disorders are present in a normal state in the general population. That goes for mania, depression, oscillations between the two, lack of empathy, anxiety, and even psychosis (e.g. it would be very unhealthy to not be somewhat paranoid these days, dreams are necessary hallucinations). The inability to fluidly shift among these many ways of dealing with reality, following the circumstances is, in my own personal book, the problem. Past a certain degree of rigidity, that itself fosters behaviors, we have a problem and often the person is aware of that. That ties in with Myth #2. In my experience, it's not lack of empathy but a deficit in the ability to intuitively project into an other. A very large proportion of our interactions and behaviors rests on intuition and subconscious processing. I often compare autism to flying instruments. Try it and you'll very quickly get a clue of what it feels like to lack this intuitive processing. The sad and hard thing is that autistic people do suffer from that and are often driven crazy not by the autistic thing but by the, secondary, suffering. For adolescents. it's even worse: they fly instruments in a storm. Myth #3: So it really isn't about normalizing but about increasing flexibility. And reducing suffering is pretty much a pre-requisite towards that. Even in Aspies, this suffering is sometimes so great that it reminds me of homosexuals before the invention of the "coming out".