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Autism Spectrum Disorders

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  • T1DCarnivoreRunner
    T1DCarnivoreRunner Posts: 11,502 Member
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    kgeyser wrote: »
    I'm sure some people are going to jump all over me for this viewpoint, but I don't really care. If you think there is something that would actually change my view, I'm open to it. If you just want to tell me I'm a terrible person for having this viewpoint, or that I'm wrong because your cousin/sibling/kid/etc. doesn't fit either of the things I see; my viewpoint won't change based on that.

    Since they changed the DSM criteria several years ago, the number of ASD cases has drastically increased. If you read through the criteria, you might understand why... anybody could be diagnosed under one or more of the criteria. While I believe that many patients truly have a developmental issue, there are a lot diagnosed with ASD now that just have old-fashioned behavioral issues. Many of the latter are actually "bad parenting."

    That isn't to say all ASD patients fit that scenario, but it has become a trend where terrible parents have kids with awful behavior, so they take them to someone who diagnoses ASD based on vague DSM criteria. Terrible parents then just excuse their absent parenting with "I just can't help it... my kid has ASD."


    I can immediately tell from your post that you are not on the spectrum and have no clue how painful it is to know or be an adult with aspergers/autism.

    I have never been diagnosed, nor have I ever sought a diagnosis. If I did, I am certain I would be diagnosed with ASD. That is true for many, based on the DSM being so vague.

    https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

    In fact, I probably fit even more than most... all of A without question, and all of B to varying extents lesser than A.

    But once again, the criteria is so vague that it could apply to most people. It actually seems intentionally vague.

    It is clear that you are not familiar with the process of diagnosis, because that isn't how autism is diagnosed in children. For my daughter, she underwent a battery of tests and assessments (at least 6 hours worth) and there were assessments completed by family, teachers, and anyone else who has spent a significant amount of time with her and observed her behavior long term - not just in one session or based on someone seeing a child acting up in a store.

    Is there any actual evidence of a trend of over-diagnosis? The expanded criteria are allowing children who are in need of help and support to actually qualify to get it. It sounds like you are just assuming that people are getting their kids diagnosed so they don't have to deal with them.

    What you saw as a terrible parent might have actually been a parent who has a child with autism, desperately needs help and support services, and isn't able to get them thanks to another reality of autism - limited services available with long wait lists. ABA therapy is costly and time-consuming, and most therapists travel to your home or school for the therapy, which means they not only need to calculate the multi-hour session times with a client, but also travel time between clients. There are only so many hours in a day, and then they also have to do paperwork and reports. They generally can't take on a large number of clients. Some other forms of therapy aren't covered by insurance, making them out of reach.

    None of that contradicts my point that the DSM criteria is vague.

    Also yes, if I were a kid today and my parents wanted to go through that process, I am still convinced that I could get an ASD diagnosis. The assessments by others who spend time with me would strengthen that probability, not weaken it.

    Does that mean all diagnosed with ASD are just bratty kids? No, that isn't my point at all. Yet there are some in yhat mix. It is this century's version of ADHD. When I was a kid, a lot of kids were on Ritalin. Some of them just had terrible parents, while others had mental issues unrelated to their environments.
  • leanjogreen18
    leanjogreen18 Posts: 2,492 Member
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    I mentioned upthread only 7% "outgrow" the diagnosis so a small percentage are probably misdiagnosed.
  • kami3006
    kami3006 Posts: 4,978 Member
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    kgeyser wrote: »
    I'm sure some people are going to jump all over me for this viewpoint, but I don't really care. If you think there is something that would actually change my view, I'm open to it. If you just want to tell me I'm a terrible person for having this viewpoint, or that I'm wrong because your cousin/sibling/kid/etc. doesn't fit either of the things I see; my viewpoint won't change based on that.

    Since they changed the DSM criteria several years ago, the number of ASD cases has drastically increased. If you read through the criteria, you might understand why... anybody could be diagnosed under one or more of the criteria. While I believe that many patients truly have a developmental issue, there are a lot diagnosed with ASD now that just have old-fashioned behavioral issues. Many of the latter are actually "bad parenting."

    That isn't to say all ASD patients fit that scenario, but it has become a trend where terrible parents have kids with awful behavior, so they take them to someone who diagnoses ASD based on vague DSM criteria. Terrible parents then just excuse their absent parenting with "I just can't help it... my kid has ASD."


    I can immediately tell from your post that you are not on the spectrum and have no clue how painful it is to know or be an adult with aspergers/autism.

    I have never been diagnosed, nor have I ever sought a diagnosis. If I did, I am certain I would be diagnosed with ASD. That is true for many, based on the DSM being so vague.

    https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

    In fact, I probably fit even more than most... all of A without question, and all of B to varying extents lesser than A.

    But once again, the criteria is so vague that it could apply to most people. It actually seems intentionally vague.

    It is clear that you are not familiar with the process of diagnosis, because that isn't how autism is diagnosed in children. For my daughter, she underwent a battery of tests and assessments (at least 6 hours worth) and there were assessments completed by family, teachers, and anyone else who has spent a significant amount of time with her and observed her behavior long term - not just in one session or based on someone seeing a child acting up in a store.

    Is there any actual evidence of a trend of over-diagnosis? The expanded criteria are allowing children who are in need of help and support to actually qualify to get it. It sounds like you are just assuming that people are getting their kids diagnosed so they don't have to deal with them.

    What you saw as a terrible parent might have actually been a parent who has a child with autism, desperately needs help and support services, and isn't able to get them thanks to another reality of autism - limited services available with long wait lists. ABA therapy is costly and time-consuming, and most therapists travel to your home or school for the therapy, which means they not only need to calculate the multi-hour session times with a client, but also travel time between clients. There are only so many hours in a day, and then they also have to do paperwork and reports. They generally can't take on a large number of clients. Some other forms of therapy aren't covered by insurance, making them out of reach.

    None of that contradicts my point that the DSM criteria is vague.

    Also yes, if I were a kid today and my parents wanted to go through that process, I am still convinced that I could get an ASD diagnosis. The assessments by others who spend time with me would strengthen that probability, not weaken it.

    Does that mean all diagnosed with ASD are just bratty kids? No, that isn't my point at all. Yet there are some in yhat mix. It is this century's version of ADHD. When I was a kid, a lot of kids were on Ritalin. Some of them just had terrible parents, while others had mental issues unrelated to their environments.

    I think given the unknown cause(s) and the wide variety of symptoms that it just isn't feasible at this time to narrow the criteria. It's likely multiple conditions with multiple causes that are similar in presentation but until more conclusive research is achieved, the current broadness of the spectrum will remain. That means more people being diagnosed than necessary but IMO that means more people who need it getting help in spite of others misdiagnoses or abuse of the system. :/
  • Fuzzipeg
    Fuzzipeg Posts: 2,298 Member
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    For those with digestive issues, there are a wide range of enzymes which could make foods easier to deal with. I found phenol a difficult one to counteract but I got there in the end. I do not want to take anything from anyone, only thinking they could make problem foods less of an issue and make nutrition more easily available.
  • try2again
    try2again Posts: 3,562 Member
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    Since they changed the DSM criteria several years ago, the number of ASD cases has drastically increased. If you read through the criteria, you might understand why... anybody could be diagnosed under one or more of the criteria.

    I happen to be reading up on these criteria, as I have some concerns about my son. I don't find them to be particularly vague. The book A Parent's Guide to High-Functioning ASD (updated in 2015) describes 7 symptoms, 3 involving social behavior and 4 involving restricted or repetitive behaviors, and says children must display 5 of those 7 (all 3 social symptoms and at least 2 of the 4 restricted/repetitive behaviors) to qualify for an ASD diagnosis. I believe almost everybody might display one of those symptoms, but not 5 out of 7! In fact, to me, it made it sound like getting a diagnosis might be pretty tough.

  • T1DCarnivoreRunner
    T1DCarnivoreRunner Posts: 11,502 Member
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    kgeyser wrote: »
    kgeyser wrote: »
    I'm sure some people are going to jump all over me for this viewpoint, but I don't really care. If you think there is something that would actually change my view, I'm open to it. If you just want to tell me I'm a terrible person for having this viewpoint, or that I'm wrong because your cousin/sibling/kid/etc. doesn't fit either of the things I see; my viewpoint won't change based on that.

    Since they changed the DSM criteria several years ago, the number of ASD cases has drastically increased. If you read through the criteria, you might understand why... anybody could be diagnosed under one or more of the criteria. While I believe that many patients truly have a developmental issue, there are a lot diagnosed with ASD now that just have old-fashioned behavioral issues. Many of the latter are actually "bad parenting."

    That isn't to say all ASD patients fit that scenario, but it has become a trend where terrible parents have kids with awful behavior, so they take them to someone who diagnoses ASD based on vague DSM criteria. Terrible parents then just excuse their absent parenting with "I just can't help it... my kid has ASD."


    I can immediately tell from your post that you are not on the spectrum and have no clue how painful it is to know or be an adult with aspergers/autism.

    I have never been diagnosed, nor have I ever sought a diagnosis. If I did, I am certain I would be diagnosed with ASD. That is true for many, based on the DSM being so vague.

    https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

    In fact, I probably fit even more than most... all of A without question, and all of B to varying extents lesser than A.

    But once again, the criteria is so vague that it could apply to most people. It actually seems intentionally vague.

    It is clear that you are not familiar with the process of diagnosis, because that isn't how autism is diagnosed in children. For my daughter, she underwent a battery of tests and assessments (at least 6 hours worth) and there were assessments completed by family, teachers, and anyone else who has spent a significant amount of time with her and observed her behavior long term - not just in one session or based on someone seeing a child acting up in a store.

    Is there any actual evidence of a trend of over-diagnosis? The expanded criteria are allowing children who are in need of help and support to actually qualify to get it. It sounds like you are just assuming that people are getting their kids diagnosed so they don't have to deal with them.

    What you saw as a terrible parent might have actually been a parent who has a child with autism, desperately needs help and support services, and isn't able to get them thanks to another reality of autism - limited services available with long wait lists. ABA therapy is costly and time-consuming, and most therapists travel to your home or school for the therapy, which means they not only need to calculate the multi-hour session times with a client, but also travel time between clients. There are only so many hours in a day, and then they also have to do paperwork and reports. They generally can't take on a large number of clients. Some other forms of therapy aren't covered by insurance, making them out of reach.

    None of that contradicts my point that the DSM criteria is vague.

    Also yes, if I were a kid today and my parents wanted to go through that process, I am still convinced that I could get an ASD diagnosis. The assessments by others who spend time with me would strengthen that probability, not weaken it.

    Does that mean all diagnosed with ASD are just bratty kids? No, that isn't my point at all. Yet there are some in yhat mix. It is this century's version of ADHD. When I was a kid, a lot of kids were on Ritalin. Some of them just had terrible parents, while others had mental issues unrelated to their environments.

    As a child, you were able to review the medical records of all the other children around you to determine whether or not they had the appropriate diagnosis? And you managed to be around them 24/7 to know what their parents were like?

    If you did know about this topic, beyond the "This thing I read about sounds like me, I probably have it" stuff that happens every semester in every Abnormal Psychology class, you would know that autism can present co-morbidly with disorders like ADHD. Since the criteria for autism were so narrow, people would be treated for the ADHD without the autism diagnosis, meaning they got put on medication without the needed therapies to deal with the other issues, which again, you chalk up to "terrible parenting."

    If you really think you might be on the spectrum, then go speak to a professional about your concerns and see if you can get a diagnosis. But please do not try to co-opt the experiences of others or start ranting about "bad parents."

    Because again, if you did know about this topic, you would know that being called "bad parents" by people who know nothing about our struggles, but are convinced that this is all our fault or that we're "faking it," is something parents of children with autism have in common.

    I see no need to get a diagnosis as it isn't something I'm concerned about with myself, nor would it make any difference to me.

    It sounds like it upsets you more that I'm pointing out that there are truly bad parents using ASD as an excuse than the fact that they exist. As much as I try to keep an open mind, I won't forgive every parent whose kid is throwing a fit in the grocery store, restaurant, etc. just because they claim their kid is "on the spectrum." In fact, here is an article making that point: http://www.runningforautism.com/2014/08/11/autism-is-no-excuse/ Though I go a step further than the author by suggesting there are some convenience diagnosis. Though some of those cases may not have an official diagnosis; it may be that the parents just claim their brat kid is autistic. That would be even more convenient in most cases.
  • T1DCarnivoreRunner
    T1DCarnivoreRunner Posts: 11,502 Member
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    try2again wrote: »

    Since they changed the DSM criteria several years ago, the number of ASD cases has drastically increased. If you read through the criteria, you might understand why... anybody could be diagnosed under one or more of the criteria.

    I happen to be reading up on these criteria, as I have some concerns about my son. I don't find them to be particularly vague. The book A Parent's Guide to High-Functioning ASD (updated in 2015) describes 7 symptoms, 3 involving social behavior and 4 involving restricted or repetitive behaviors, and says children must display 5 of those 7 (all 3 social symptoms and at least 2 of the 4 restricted/repetitive behaviors) to qualify for an ASD diagnosis. I believe almost everybody might display one of those symptoms, but not 5 out of 7! In fact, to me, it made it sound like getting a diagnosis might be pretty tough.

    Are you sure you are not looking at the prior (DSM-4) criteria? Here is the DSM-5 criteria: https://www.cdc.gov/ncbddd/autism/hcp-dsm.html
  • T1DCarnivoreRunner
    T1DCarnivoreRunner Posts: 11,502 Member
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    kgeyser wrote: »
    kgeyser wrote: »
    kgeyser wrote: »
    I'm sure some people are going to jump all over me for this viewpoint, but I don't really care. If you think there is something that would actually change my view, I'm open to it. If you just want to tell me I'm a terrible person for having this viewpoint, or that I'm wrong because your cousin/sibling/kid/etc. doesn't fit either of the things I see; my viewpoint won't change based on that.

    Since they changed the DSM criteria several years ago, the number of ASD cases has drastically increased. If you read through the criteria, you might understand why... anybody could be diagnosed under one or more of the criteria. While I believe that many patients truly have a developmental issue, there are a lot diagnosed with ASD now that just have old-fashioned behavioral issues. Many of the latter are actually "bad parenting."

    That isn't to say all ASD patients fit that scenario, but it has become a trend where terrible parents have kids with awful behavior, so they take them to someone who diagnoses ASD based on vague DSM criteria. Terrible parents then just excuse their absent parenting with "I just can't help it... my kid has ASD."


    I can immediately tell from your post that you are not on the spectrum and have no clue how painful it is to know or be an adult with aspergers/autism.

    I have never been diagnosed, nor have I ever sought a diagnosis. If I did, I am certain I would be diagnosed with ASD. That is true for many, based on the DSM being so vague.

    https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

    In fact, I probably fit even more than most... all of A without question, and all of B to varying extents lesser than A.

    But once again, the criteria is so vague that it could apply to most people. It actually seems intentionally vague.

    It is clear that you are not familiar with the process of diagnosis, because that isn't how autism is diagnosed in children. For my daughter, she underwent a battery of tests and assessments (at least 6 hours worth) and there were assessments completed by family, teachers, and anyone else who has spent a significant amount of time with her and observed her behavior long term - not just in one session or based on someone seeing a child acting up in a store.

    Is there any actual evidence of a trend of over-diagnosis? The expanded criteria are allowing children who are in need of help and support to actually qualify to get it. It sounds like you are just assuming that people are getting their kids diagnosed so they don't have to deal with them.

    What you saw as a terrible parent might have actually been a parent who has a child with autism, desperately needs help and support services, and isn't able to get them thanks to another reality of autism - limited services available with long wait lists. ABA therapy is costly and time-consuming, and most therapists travel to your home or school for the therapy, which means they not only need to calculate the multi-hour session times with a client, but also travel time between clients. There are only so many hours in a day, and then they also have to do paperwork and reports. They generally can't take on a large number of clients. Some other forms of therapy aren't covered by insurance, making them out of reach.

    None of that contradicts my point that the DSM criteria is vague.

    Also yes, if I were a kid today and my parents wanted to go through that process, I am still convinced that I could get an ASD diagnosis. The assessments by others who spend time with me would strengthen that probability, not weaken it.

    Does that mean all diagnosed with ASD are just bratty kids? No, that isn't my point at all. Yet there are some in yhat mix. It is this century's version of ADHD. When I was a kid, a lot of kids were on Ritalin. Some of them just had terrible parents, while others had mental issues unrelated to their environments.

    As a child, you were able to review the medical records of all the other children around you to determine whether or not they had the appropriate diagnosis? And you managed to be around them 24/7 to know what their parents were like?

    If you did know about this topic, beyond the "This thing I read about sounds like me, I probably have it" stuff that happens every semester in every Abnormal Psychology class, you would know that autism can present co-morbidly with disorders like ADHD. Since the criteria for autism were so narrow, people would be treated for the ADHD without the autism diagnosis, meaning they got put on medication without the needed therapies to deal with the other issues, which again, you chalk up to "terrible parenting."

    If you really think you might be on the spectrum, then go speak to a professional about your concerns and see if you can get a diagnosis. But please do not try to co-opt the experiences of others or start ranting about "bad parents."

    Because again, if you did know about this topic, you would know that being called "bad parents" by people who know nothing about our struggles, but are convinced that this is all our fault or that we're "faking it," is something parents of children with autism have in common.

    I see no need to get a diagnosis as it isn't something I'm concerned about with myself, nor would it make any difference to me.

    It sounds like it upsets you more that I'm pointing out that there are truly bad parents using ASD as an excuse than the fact that they exist. As much as I try to keep an open mind, I won't forgive every parent whose kid is throwing a fit in the grocery store, restaurant, etc. just because they claim their kid is "on the spectrum." In fact, here is an article making that point: http://www.runningforautism.com/2014/08/11/autism-is-no-excuse/ Though I go a step further than the author by suggesting there are some convenience diagnosis. Though some of those cases may not have an official diagnosis; it may be that the parents just claim their brat kid is autistic. That would be even more convenient in most cases.

    So basically, you don't believe you have autism, you're just coming in to mock the criteria and the process,

    No, I believe that I do, based on current DSM criteria. I just don't care enough at this point in my life to seek a diagnosis because it really won't change anything. I'm not trying to "mock" anything, just pointing out what is there.
    and perpetuate rumors that people are gaming the system, making things even more difficult for parents with children with autism.

    Are you telling me that every single case where a parent claims a kid has autism is not only an actual diagnosis, but that the diagnosis is not simply because of the change in diagnosis? If that is your point, then we disagree.
    You haven't actually proven anything, you're just speculating that this "convenience diagnosis" (again, laughable when taken into consideration what really goes into a diagnosis) is happening at a significant rate. So let's see some data on actual numbers of cases where this is happening.

    Could you define "significant rate" for me? It sounds like you are putting my thoughts into your own words, except it is obvious to me that you don't really know my thoughts.

    I'm not saying it is every case. I'm not even saying it is "most" cases. I do know there was a research study (read in the Journal of Epidemiology in 2008, IIRC), based on cases in the State of California, that found approx. 25% increase in diagnosis as the DSM criteria changed. Some of that 25% increase may be simply a result of more ASD cases truly occurring. Some of that increase is due to a different DSM criteria, which I am suggesting both includes less severed cases that might not have qualified under previous DSM criteria and opens the criteria up to abuse. I don't believe it is every case. I don't even believe it is most cases where there is a true diagnosis. Yet I do believe it happens. It sounds to me like you don't think that has ever happened. Is that correct?
    "I won't forgive every parent whose kid is throwing a fit in the grocery store, restaurant, etc. just because they claim their kid is "on the spectrum."

    You won't "forgive" a parent for a child - a completely separate human being - having a fit? [/quote]

    I don't forgive the parent who is responsible for the child any more than I won't forgive a dog owner when the dog is allowed to run the neighborhood freely and then ends up biting someone. I don't forgive the dog or the child either, but I do expect that the adult in charge (not saying "adult responsible for" because they are not always actually a "responsible" adult) of the child or animal takes some responsibility.
    It's clear that you don't have the slightest concept of what actually happens to a person experiencing a fit. You have all kinds of sensory information coming in that you cannot process. You know you have to do something differently, but you physically and mentally can't get yourself to do it. Yes, it's frustrating for those around you, but to the person experiencing it, it's terrifying. You've basically lost control, you're aware that you aren't in control, and you can't even rationally express what you are feeling. The screaming and flailing isn't defiance or bad behavior, it's what they have available to them at the moment to express that something is wrong. Parents do the best that they can in those situations to handle the situation in a way that is safe for everyone.

    Depending on the program, sometimes that means ignoring, especially with high-functioning individuals. I have more trouble with fits being prolonged or escalated in public due to other adults thinking they are "helping" by trying to calm my daughter, or making snide remarks to try to "shame" her into better behavior than I would if everyone would just leave us alone and let me handle it.

    Exactly what I do when faced with that situation - leave them alone to handle it. Unfortunately, I can count on 1 hand the number of times the adult in charge made an attempt to do anything. In cases where a manager of the establishment tried to say something, I've almost always heard the "s/he's autistic and I just can't help it" point where the caretaker has obviously just given up and is not willing to try.
    But then they wouldn't be able to go online later and tell everyone they know on social media about how "victimized" they were by a screaming child in a public place and how they stood up to that horrible parent who doesn't know how to discipline their child. *cue Mariah Carey possibly remembering the words to "Hero"*

    Hmm.... the cases I'm thinking about in the media or even on social media are cases where the parent posted the story, not others who were inconvenienced. I've seen parents of allegedly autistic kids going to the press claiming they were victimized, but not the other way around. When others present tell a completely different side of the story, I've only ever seen it in rebuttal to a story told by parents. Often times, the story told by parents has been adjusted to gain sympathy. In one case I can think of in particular, the mom ran to the press about being discriminated against. Said her daughter was acting like an angel and was sitting quietly. Witnesses later told a different story. After a few days, someone came forward with video showing the mom was lying and that the witnesses had left off details (specifically details of violence - they had only mentioned screaming). In the video, the parents were acting out almost just as much when staff said something.
  • try2again
    try2again Posts: 3,562 Member
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    kgeyser wrote: »
    kgeyser wrote: »
    kgeyser wrote: »
    I'm sure some people are going to jump all over me for this viewpoint, but I don't really care. If you think there is something that would actually change my view, I'm open to it. If you just want to tell me I'm a terrible person for having this viewpoint, or that I'm wrong because your cousin/sibling/kid/etc. doesn't fit either of the things I see; my viewpoint won't change based on that.

    Since they changed the DSM criteria several years ago, the number of ASD cases has drastically increased. If you read through the criteria, you might understand why... anybody could be diagnosed under one or more of the criteria. While I believe that many patients truly have a developmental issue, there are a lot diagnosed with ASD now that just have old-fashioned behavioral issues. Many of the latter are actually "bad parenting."

    That isn't to say all ASD patients fit that scenario, but it has become a trend where terrible parents have kids with awful behavior, so they take them to someone who diagnoses ASD based on vague DSM criteria. Terrible parents then just excuse their absent parenting with "I just can't help it... my kid has ASD."


    I can immediately tell from your post that you are not on the spectrum and have no clue how painful it is to know or be an adult with aspergers/autism.

    I have never been diagnosed, nor have I ever sought a diagnosis. If I did, I am certain I would be diagnosed with ASD. That is true for many, based on the DSM being so vague.

    https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

    In fact, I probably fit even more than most... all of A without question, and all of B to varying extents lesser than A.

    But once again, the criteria is so vague that it could apply to most people. It actually seems intentionally vague.

    It is clear that you are not familiar with the process of diagnosis, because that isn't how autism is diagnosed in children. For my daughter, she underwent a battery of tests and assessments (at least 6 hours worth) and there were assessments completed by family, teachers, and anyone else who has spent a significant amount of time with her and observed her behavior long term - not just in one session or based on someone seeing a child acting up in a store.

    Is there any actual evidence of a trend of over-diagnosis? The expanded criteria are allowing children who are in need of help and support to actually qualify to get it. It sounds like you are just assuming that people are getting their kids diagnosed so they don't have to deal with them.

    What you saw as a terrible parent might have actually been a parent who has a child with autism, desperately needs help and support services, and isn't able to get them thanks to another reality of autism - limited services available with long wait lists. ABA therapy is costly and time-consuming, and most therapists travel to your home or school for the therapy, which means they not only need to calculate the multi-hour session times with a client, but also travel time between clients. There are only so many hours in a day, and then they also have to do paperwork and reports. They generally can't take on a large number of clients. Some other forms of therapy aren't covered by insurance, making them out of reach.

    None of that contradicts my point that the DSM criteria is vague.

    Also yes, if I were a kid today and my parents wanted to go through that process, I am still convinced that I could get an ASD diagnosis. The assessments by others who spend time with me would strengthen that probability, not weaken it.

    Does that mean all diagnosed with ASD are just bratty kids? No, that isn't my point at all. Yet there are some in yhat mix. It is this century's version of ADHD. When I was a kid, a lot of kids were on Ritalin. Some of them just had terrible parents, while others had mental issues unrelated to their environments.

    As a child, you were able to review the medical records of all the other children around you to determine whether or not they had the appropriate diagnosis? And you managed to be around them 24/7 to know what their parents were like?

    If you did know about this topic, beyond the "This thing I read about sounds like me, I probably have it" stuff that happens every semester in every Abnormal Psychology class, you would know that autism can present co-morbidly with disorders like ADHD. Since the criteria for autism were so narrow, people would be treated for the ADHD without the autism diagnosis, meaning they got put on medication without the needed therapies to deal with the other issues, which again, you chalk up to "terrible parenting."

    If you really think you might be on the spectrum, then go speak to a professional about your concerns and see if you can get a diagnosis. But please do not try to co-opt the experiences of others or start ranting about "bad parents."

    Because again, if you did know about this topic, you would know that being called "bad parents" by people who know nothing about our struggles, but are convinced that this is all our fault or that we're "faking it," is something parents of children with autism have in common.

    I see no need to get a diagnosis as it isn't something I'm concerned about with myself, nor would it make any difference to me.

    It sounds like it upsets you more that I'm pointing out that there are truly bad parents using ASD as an excuse than the fact that they exist. As much as I try to keep an open mind, I won't forgive every parent whose kid is throwing a fit in the grocery store, restaurant, etc. just because they claim their kid is "on the spectrum." In fact, here is an article making that point: http://www.runningforautism.com/2014/08/11/autism-is-no-excuse/ Though I go a step further than the author by suggesting there are some convenience diagnosis. Though some of those cases may not have an official diagnosis; it may be that the parents just claim their brat kid is autistic. That would be even more convenient in most cases.



    Exactly what I do when faced with that situation - leave them alone to handle it. Unfortunately, I can count on 1 hand the number of times the adult in charge made an attempt to do anything. In cases where a manager of the establishment tried to say something, I've almost always heard the "s/he's autistic and I just can't help it" point where the caretaker has obviously just given up and is not willing to try.

    Don't know if the quote will show correctly, as I was having trouble isolating it, but in regards to the apparent constant encounters you seem to be having with autistic children & their parents, I'm concerned about where you must live? I think I'm quite a bit older than you and can barely recall a child having a fit of any kind in my presence in a store or restaurant, let alone that parent subsequently blaming autism. ;)


    try2again wrote: »

    Since they changed the DSM criteria several years ago, the number of ASD cases has drastically increased. If you read through the criteria, you might understand why... anybody could be diagnosed under one or more of the criteria.

    I happen to be reading up on these criteria, as I have some concerns about my son. I don't find them to be particularly vague. The book A Parent's Guide to High-Functioning ASD (updated in 2015) describes 7 symptoms, 3 involving social behavior and 4 involving restricted or repetitive behaviors, and says children must display 5 of those 7 (all 3 social symptoms and at least 2 of the 4 restricted/repetitive behaviors) to qualify for an ASD diagnosis. I believe almost everybody might display one of those symptoms, but not 5 out of 7! In fact, to me, it made it sound like getting a diagnosis might be pretty tough.

    Are you sure you are not looking at the prior (DSM-4) criteria? Here is the DSM-5 criteria: https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

    Yes, that's the right one, quoted word for word in the book. Again, I don't find it particularly vague, especially given that 5 of the criteria need to be met. It was enough for me to look at and be able to say I'm not sure my son *does* qualify for an ASD diagnosis, even though many of his behaviors are textbook. It doesn't concern me that some of the symptoms may manifest themselves in different ways from child to child, as even diagnosable medical disorders can present in a variety of ways from person to person. In fairness, the book itself notes, "As clinicians switched from DSM-IV to DSM-5, they have been surprised that, contrary to their expectations, it is in many cases easier for a child to meet criteria for a diagnosis, not harder." However, it goes on to note that in some cases, reevaluation (if it were to take place) would cause a child to *lose* their diagnosis. I found this bit particularly interesting:
    "Unlike DSM-IV, which had a category called pervasive developmental disorders and five specific diagnoses within it, DSM-5 uses a single diagnosis, ASD. DSM-IV listed 12 symptoms and required different patterns to be met for the five different PDD diagnoses; this resulted in 2,688 different ways that individual could meet criteria! This meant that there was tremendous variability among children and it was possible for two individuals with the same diagnosis not to share a single symptom." That sounds more problematic to me.

    I am certainly no expert, as I am just beginning to educate myself about the whole matter, and it sounds like they will need to continue to tweak the DSM as they learn more (because, let's remember, there is still so much that needs to be known). In the meantime, it would seem prudent not to pass judgment (better not to do that anyway). Having had the opportunity to visit with many parents of ASD children while researching the whole matter, it sounds like evaluation is often a costly and time-consuming ordeal. If a parent was just too lazy to discipline their kids, I can't imagine they'd put themselves through *that*! I'm certain there must be a few that use it as a crutch or excuse, just as a few do with any health issue. But you seem to be painting many with that broad brush.

    BTW, it occurs to me I never actually weighed in on the original question. All of my layman's research has said genetic. I never knew there even was a "debate".
  • try2again
    try2again Posts: 3,562 Member
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    Yep, for some reason, I've been having all sorts of problems with the quote feature. It displays the entire conversation on my end and inserts my comments in the quote field! If someone can spot the problem, I'm open to suggestions ;)
  • T1DCarnivoreRunner
    T1DCarnivoreRunner Posts: 11,502 Member
    edited January 2017
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    try2again wrote: »
    kgeyser wrote: »
    kgeyser wrote: »
    kgeyser wrote: »
    I'm sure some people are going to jump all over me for this viewpoint, but I don't really care. If you think there is something that would actually change my view, I'm open to it. If you just want to tell me I'm a terrible person for having this viewpoint, or that I'm wrong because your cousin/sibling/kid/etc. doesn't fit either of the things I see; my viewpoint won't change based on that.

    Since they changed the DSM criteria several years ago, the number of ASD cases has drastically increased. If you read through the criteria, you might understand why... anybody could be diagnosed under one or more of the criteria. While I believe that many patients truly have a developmental issue, there are a lot diagnosed with ASD now that just have old-fashioned behavioral issues. Many of the latter are actually "bad parenting."

    That isn't to say all ASD patients fit that scenario, but it has become a trend where terrible parents have kids with awful behavior, so they take them to someone who diagnoses ASD based on vague DSM criteria. Terrible parents then just excuse their absent parenting with "I just can't help it... my kid has ASD."


    I can immediately tell from your post that you are not on the spectrum and have no clue how painful it is to know or be an adult with aspergers/autism.

    I have never been diagnosed, nor have I ever sought a diagnosis. If I did, I am certain I would be diagnosed with ASD. That is true for many, based on the DSM being so vague.

    https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

    In fact, I probably fit even more than most... all of A without question, and all of B to varying extents lesser than A.

    But once again, the criteria is so vague that it could apply to most people. It actually seems intentionally vague.

    It is clear that you are not familiar with the process of diagnosis, because that isn't how autism is diagnosed in children. For my daughter, she underwent a battery of tests and assessments (at least 6 hours worth) and there were assessments completed by family, teachers, and anyone else who has spent a significant amount of time with her and observed her behavior long term - not just in one session or based on someone seeing a child acting up in a store.

    Is there any actual evidence of a trend of over-diagnosis? The expanded criteria are allowing children who are in need of help and support to actually qualify to get it. It sounds like you are just assuming that people are getting their kids diagnosed so they don't have to deal with them.

    What you saw as a terrible parent might have actually been a parent who has a child with autism, desperately needs help and support services, and isn't able to get them thanks to another reality of autism - limited services available with long wait lists. ABA therapy is costly and time-consuming, and most therapists travel to your home or school for the therapy, which means they not only need to calculate the multi-hour session times with a client, but also travel time between clients. There are only so many hours in a day, and then they also have to do paperwork and reports. They generally can't take on a large number of clients. Some other forms of therapy aren't covered by insurance, making them out of reach.

    None of that contradicts my point that the DSM criteria is vague.

    Also yes, if I were a kid today and my parents wanted to go through that process, I am still convinced that I could get an ASD diagnosis. The assessments by others who spend time with me would strengthen that probability, not weaken it.

    Does that mean all diagnosed with ASD are just bratty kids? No, that isn't my point at all. Yet there are some in yhat mix. It is this century's version of ADHD. When I was a kid, a lot of kids were on Ritalin. Some of them just had terrible parents, while others had mental issues unrelated to their environments.

    As a child, you were able to review the medical records of all the other children around you to determine whether or not they had the appropriate diagnosis? And you managed to be around them 24/7 to know what their parents were like?

    If you did know about this topic, beyond the "This thing I read about sounds like me, I probably have it" stuff that happens every semester in every Abnormal Psychology class, you would know that autism can present co-morbidly with disorders like ADHD. Since the criteria for autism were so narrow, people would be treated for the ADHD without the autism diagnosis, meaning they got put on medication without the needed therapies to deal with the other issues, which again, you chalk up to "terrible parenting."

    If you really think you might be on the spectrum, then go speak to a professional about your concerns and see if you can get a diagnosis. But please do not try to co-opt the experiences of others or start ranting about "bad parents."

    Because again, if you did know about this topic, you would know that being called "bad parents" by people who know nothing about our struggles, but are convinced that this is all our fault or that we're "faking it," is something parents of children with autism have in common.

    I see no need to get a diagnosis as it isn't something I'm concerned about with myself, nor would it make any difference to me.

    It sounds like it upsets you more that I'm pointing out that there are truly bad parents using ASD as an excuse than the fact that they exist. As much as I try to keep an open mind, I won't forgive every parent whose kid is throwing a fit in the grocery store, restaurant, etc. just because they claim their kid is "on the spectrum." In fact, here is an article making that point: http://www.runningforautism.com/2014/08/11/autism-is-no-excuse/ Though I go a step further than the author by suggesting there are some convenience diagnosis. Though some of those cases may not have an official diagnosis; it may be that the parents just claim their brat kid is autistic. That would be even more convenient in most cases.



    Exactly what I do when faced with that situation - leave them alone to handle it. Unfortunately, I can count on 1 hand the number of times the adult in charge made an attempt to do anything. In cases where a manager of the establishment tried to say something, I've almost always heard the "s/he's autistic and I just can't help it" point where the caretaker has obviously just given up and is not willing to try.

    Don't know if the quote will show correctly, as I was having trouble isolating it, but in regards to the apparent constant encounters you seem to be having with autistic children & their parents, I'm concerned about where you must live? I think I'm quite a bit older than you and can barely recall a child having a fit of any kind in my presence in a store or restaurant, let alone that parent subsequently blaming autism. ;)


    try2again wrote: »

    Since they changed the DSM criteria several years ago, the number of ASD cases has drastically increased. If you read through the criteria, you might understand why... anybody could be diagnosed under one or more of the criteria.

    I happen to be reading up on these criteria, as I have some concerns about my son. I don't find them to be particularly vague. The book A Parent's Guide to High-Functioning ASD (updated in 2015) describes 7 symptoms, 3 involving social behavior and 4 involving restricted or repetitive behaviors, and says children must display 5 of those 7 (all 3 social symptoms and at least 2 of the 4 restricted/repetitive behaviors) to qualify for an ASD diagnosis. I believe almost everybody might display one of those symptoms, but not 5 out of 7! In fact, to me, it made it sound like getting a diagnosis might be pretty tough.

    Are you sure you are not looking at the prior (DSM-4) criteria? Here is the DSM-5 criteria: https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

    Yes, that's the right one, quoted word for word in the book. Again, I don't find it particularly vague, especially given that 5 of the criteria need to be met. It was enough for me to look at and be able to say I'm not sure my son *does* qualify for an ASD diagnosis, even though many of his behaviors are textbook. It doesn't concern me that some of the symptoms may manifest themselves in different ways from child to child, as even diagnosable medical disorders can present in a variety of ways from person to person. In fairness, the book itself notes, "As clinicians switched from DSM-IV to DSM-5, they have been surprised that, contrary to their expectations, it is in many cases easier for a child to meet criteria for a diagnosis, not harder." However, it goes on to note that in some cases, reevaluation (if it were to take place) would cause a child to *lose* their diagnosis. I found this bit particularly interesting:
    "Unlike DSM-IV, which had a category called pervasive developmental disorders and five specific diagnoses within it, DSM-5 uses a single diagnosis, ASD. DSM-IV listed 12 symptoms and required different patterns to be met for the five different PDD diagnoses; this resulted in 2,688 different ways that individual could meet criteria! This meant that there was tremendous variability among children and it was possible for two individuals with the same diagnosis not to share a single symptom." That sounds more problematic to me.

    I am certainly no expert, as I am just beginning to educate myself about the whole matter, and it sounds like they will need to continue to tweak the DSM as they learn more (because, let's remember, there is still so much that needs to be known). In the meantime, it would seem prudent not to pass judgment (better not to do that anyway). Having had the opportunity to visit with many parents of ASD children while researching the whole matter, it sounds like evaluation is often a costly and time-consuming ordeal. If a parent was just too lazy to discipline their kids, I can't imagine they'd put themselves through *that*! I'm certain there must be a few that use it as a crutch or excuse, just as a few do with any health issue. But you seem to be painting many with that broad brush.

    BTW, it occurs to me I never actually weighed in on the original question. All of my layman's research has said genetic. I never knew there even was a "debate".

    I fail to see where it indicates any minimum quantity of the DSM criteria must apply for a diagnosis. But that is only based on the CDC website (posted) and the Autism Speaks website listing that diagnostic criteria. Do you have the actual DSM-5 book?
    try2again wrote: »
    In fairness, the book itself notes, "As clinicians switched from DSM-IV to DSM-5, they have been surprised that, contrary to their expectations, it is in many cases easier for a child to meet criteria for a diagnosis, not harder."

    No kitten it's easier for a diagnosis. That's been my whole point all along, and it was obvious to me just looking at the criteria and noticing the increase in cases. If their expectations were for a diagnosis to be more difficult, I have to really question how they reached that expectation. Did they just not read it?! I'm not sure if I can find a rational reason for such an expectation. Then again, they are looking at it from a different perspective...

    As to where I live - it is in my profile. But, I also travel the U.S. extensively. I've visited 46 States and D.C. in the past 5 years.

    ETA's: Trying to fix quotes also - looks like a missing section, but not going to worry about it at this point. Close enough.
  • SideSteel
    SideSteel Posts: 11,068 Member
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    triandtry wrote: »
    I'm qualified in this area, as a Professor, a Physician (Neurologist), a neuroscientist and a geneticist, who actively works, is federally (NIH) funded, and publishes work on autism.

    I feel bad for the confusion on this thread, and I think it is understandable, given that we really didn't know the first thing about autism or what caused as recently as ~6 years ago. The hypothesis that it could be genetic has now been shown to be certainly true for an increasing number of individuals (I can provide top-tier references for those interested). That number is now up to ~25% of individuals--where a genetic diagnosis can be made. The importance of this is beyond "academic" -- this kind of information is pointing the way to rationale understanding if pathogenesis, which in turn points toward preventive measures, therapeutic options, and understanding of if and where genes x environmental challenges.

    My best advice would be to look into participating in studies aimed at finding such causes--both on an individual level, and an altruistic one. Perhaps the very best way to participate is through the Simons Foundation--their most recent, very large project, aims to talk to and try and understand 50,000 affected individuals.

    See https://www.simonsfoundation.org/features/foundation-news/sfari-launches-spark-online-research-initiative/

    I'd actually be interested in references if you don't mind. I only ask because my 5 year old son has autism and so this topic is close to me.

    Thanks for offering and for replying, I do appreciate it!
  • try2again
    try2again Posts: 3,562 Member
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    @midwesterner85 - Not going to quote because it's still a mess, but to answer your question: I don't have the DSM. This is from the book A Parent's Guide to High-Functioning ASD, which I believe is reputable and authored by 3 Drs with excellent credentials: "In DSM-5, the list of symptoms has been streamlined to seven and an individual must display at least five of them to receive an ASD diagnosis. In contrast to DSM-IV, there are only six different patterns a child may show." And also: "To meet criteria for ASD, your child must display at least five of the seven symptoms listed in DSM-5- all three of those in the social interaction area and at least two of the four in the restricted/repetitive behaviors area."
  • T1DCarnivoreRunner
    T1DCarnivoreRunner Posts: 11,502 Member
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    try2again wrote: »
    @midwesterner85 - Not going to quote because it's still a mess, but to answer your question: I don't have the DSM. This is from the book A Parent's Guide to High-Functioning ASD, which I believe is reputable and authored by 3 Drs with excellent credentials: "In DSM-5, the list of symptoms has been streamlined to seven and an individual must display at least five of them to receive an ASD diagnosis. In contrast to DSM-IV, there are only six different patterns a child may show." And also: "To meet criteria for ASD, your child must display at least five of the seven symptoms listed in DSM-5- all three of those in the social interaction area and at least two of the four in the restricted/repetitive behaviors area."

    Hmm... yet I'm not seeing that on the CDC's website or the AutistmSpeaks website. Your book is the only place where I'm hearing about the requirement to have 5 of those criteria.
  • sithiria
    sithiria Posts: 16 Member
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    I diagnosed my daughter myself at 18 mos when she wasn't meeting milestones. First they said pervasive developmental disorder and finally autism. She is an honor roll 6th grader now.
  • try2again
    try2again Posts: 3,562 Member
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    toolzz wrote: »
    I am in Canada, Ontario specifically, and they do not identify just to label difficult children....a diagnosis enables you to engage in programs for behavioural therapy and school supports that would otherwise not be available. These supports are a burden on the health care system so they do everything they can to NOT identify on the spectrum.

    I think this is a good point. In the US, much of the autism screening is performed through the schools, and then they have to make accommodations if a diagnosis is made. I know schools will refuse to test if they don't feel the child is being impacted academically. Plus, two posters mentioned they didn't even pursue the diagnosis because they home school and thus didn't require special accommodations. I am in the same situation. So if there is an issue of over-diagnosis, I wonder if the numbers are mitigated somewhat by those who may not be pursuing a diagnosis at all?
  • mommarnurse
    mommarnurse Posts: 515 Member
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    Going along with the probably accurate theory that it's genetic, how can we account for the obvious increasing number of diagnoses over the past 20 years or so? Yes, the broad diagnosis of ASD now in part accounts for 1.) many disorders (I.e. Intellectual disability, learning disability, add/adhd) are now encompassed into the ASD diagnosis and 2.) many people could have been diagnosed but the symptom set recognition and name wasn't there previously

    However, I still feel like aside from accounting for these circumstances, there's still probably an actual increase in cases. There's something there causing that, either directly or indirectly. It could be environmental causing gene damage, and I think it probably is. But, environmental doesn't just mean "chemicals" or "pesticides", etc. it's going to be very hard to narrow it down.