Reminder about the purpose of the Kids with Special Needs Forum

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:^This is exactly the problem. ^

Can you be more specific?

Sure - here is a summary of the last page:

"When people post asking for help and describing autism symptoms ... people are going to ask or suggest an autism diagnosis"

"It's great you are trying to help others not make the mistakes you made but it would be helpful if you did it in a more positive, helpful and supportive way."

"I raise my story as an example of why it is appropriate to mention autism when a parent asks a question here, in certain cases. Do you think autism should never be suggested?"

"Nobody said you can't mention autism. Nobody. So why do you ask that?"

"I agree with a lot of what you wrote, except for the idea that there needs to be some cone of silence around suggesting autism."

"I see you're more interested in attacking me (and have apparently turned me into an amalgam of all the posters you find offensive) than you are in actually developing useful moderation standards."

"I see you are more interested in muddying the waters than in following the moderation standards from the moderator."

"There is no cone of silence around autism."

Here is an example of a post that would be helpful:

"My DS presented similarly at this age. It took some time to get good advice, but what ended up happening was we went to KKI when he was 5 and had an ADOS and he was diagnosed with autism." No need to get into a battle about anything and you don't need to tell every detail of your story because it becomes less likely that it will resonate with the OP. If the OP wants more info from you, they will ask.

?? you're confusing the discussion on this thread (which is about when/how autism or other specific diagnoses should be raised) with responses to an OP. I don't disagree at all with what you suggest as a model of a helpful post. But the fight here seems to have devolved into one "side" believing that Jeff's moderation decision is that autism should never be mention in response to an OP raising what PPs consider to be potential signs of autism. I believe that is incorrect. Some PPs are trying to portray a situation where autism can't be raised, which would obviously be absurd (given the 1:59 prevalence of autism! it's going to come up very frequently in this forum.)

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Jeff, a big part of the problem that you don’t and shouldn’t have to frankly understand in the underlying ongoing issues between the “MERLD” parents and their seeming foes, usually parents of children with autism, is that there are longstanding and popular Facebook groups dedicated to avoiding an autism diagnosis and that autism is overdoagnosed. Many of these parents have sought specific labels other than autism. They are very restrictive in the views that are allowed to be presented in the Facebook groups. No mention can be made of ABA or suggestions that something may in fact be autism. Those groups are dedicated to the idea that children grow out of these MERLD issues and that autism is far more serious and debilitating.

Perhaps that may give you some insight as to how this plays out here. The real problem many of the MERLD parents have is with the DSM. They wouldn’t even agree that many of the kids who have been diagnosed with autism by professionals have autism. They dispute the legitimacy of the diagnosis other than in rare cases. This is the crux of the real dispute playing out here but it only gets represented in agenda driven posts like, see an slp rather than get a full neuropsychology, etc. it’s subtle - not to us, but to an outside observer - but it’s the pushing of an agenda and it’s often hugely and horribly inappropriate and unhelpful for individual parents because it’s a red herring. I understand you can’t regulate this but I’m sick of every post being dominated hey these posters who are frankly on a crusade, so I’m not going to use this forum anymore.

This isn't the problem at all. i'm not sure why you're focusing on the MERLD vs ASD issue. The problem is that some posters (now i'm thinking it is just one poster?) are obsessed with looking at every kid from the lens of ASD -- even when those kids have very clear diagnoses that aren't ASD *or* MERLD. I am not an ASD denier nor a MERLD pusher (I don't even know what MERLD is). I rarely see anyone on this forum denying ASD. I *do* see posters suggest ASD and neuropsych evaluations all the time -- to the point where it is comical.

Please - if you are the poster that is having to defend themselves to Jeff on this thread -- please know that YOU are the problem. No one else on this forum. It is YOU. We are asking YOU to dial it down. If you STILL feel the need to defend this position to Jeff and me and others on this thread, despite EVERYTHING we've told you in this thread, then that is a very clear sign: Please leave this forum. You are far, far, far more hurtful than you are helpful. I'm not sure why you are fighting this so much and not getting it.

Because Jeff said that was the issue. Go back to the beginning. And no, I am not that poster. But if you have a child older than 6 with major life disrupting issues, the standard of care is a neurophsycological exam. That's not debatable. Parents suggesting that are in multitudes because it is simply what is recommended. Also, as I just said, my kid doesn't have autism. It certainly isn't always ASD. I don't think anyone has said that. I was, however, personally sucked into the rabbit hole of the MERLD facebook groups and wasted time on that line so I do have personal experience on how it can be harmful.

I think the overall point here PPs, is that in a thread with a 6+ kid exhibiting major, undiagnosed issues, saying "get a neuropsych" one time is ok; engaging in a debate about it after that is not. Even better,say exactly what you mean by a neuropsych (because that's not always clear from context). I'm guilty of being the one person in those threads who always pushes back on the "neuropsych" as a generic, but I vow to do better next time! Similarly if someone posts an OP asking about MERLD in a way that's open for discussion, then it's valuable to post your experience with the facebook group, but then move on. I share your frustration with the "go to Tennessee" thing, but it's important not to derail.

[Anonymous]

Anonymous wrote:Jeff, a big part of the problem that you don’t and shouldn’t have to frankly understand in the underlying ongoing issues between the “MERLD” parents and their seeming foes, usually parents of children with autism, is that there are longstanding and popular Facebook groups dedicated to avoiding an autism diagnosis and that autism is overdoagnosed. Many of these parents have sought specific labels other than autism. They are very restrictive in the views that are allowed to be presented in the Facebook groups. No mention can be made of ABA or suggestions that something may in fact be autism. Those groups are dedicated to the idea that children grow out of these MERLD issues and that autism is far more serious and debilitating.

Perhaps that may give you some insight as to how this plays out here. The real problem many of the MERLD parents have is with the DSM. They wouldn’t even agree that many of the kids who have been diagnosed with autism by professionals have autism. They dispute the legitimacy of the diagnosis other than in rare cases. This is the crux of the real dispute playing out here but it only gets represented in agenda driven posts like, see an slp rather than get a full neuropsychology, etc. it’s subtle - not to us, but to an outside observer - but it’s the pushing of an agenda and it’s often hugely and horribly inappropriate and unhelpful for individual parents because it’s a red herring. I understand you can’t regulate this but I’m sick of every post being dominated hey these posters who are frankly on a crusade, so I’m not going to use this forum anymore.

TBH I think this is just too much insider-baseball for Jeff to be able to handle & create a moderation standard around. He's a generalist. It does make me wonder, though, how a forum like this would have fared, say, when the whole anti-vax/vaccines cause autism fraud was being perpetrated. At the end of the day, all you and I and other evidence-minded parents can do is ensure that our comments are made in a way that doesn't derail the discussion.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Jeff, a big part of the problem that you don’t and shouldn’t have to frankly understand in the underlying ongoing issues between the “MERLD” parents and their seeming foes, usually parents of children with autism, is that there are longstanding and popular Facebook groups dedicated to avoiding an autism diagnosis and that autism is overdoagnosed. Many of these parents have sought specific labels other than autism. They are very restrictive in the views that are allowed to be presented in the Facebook groups. No mention can be made of ABA or suggestions that something may in fact be autism. Those groups are dedicated to the idea that children grow out of these MERLD issues and that autism is far more serious and debilitating.

Perhaps that may give you some insight as to how this plays out here. The real problem many of the MERLD parents have is with the DSM. They wouldn’t even agree that many of the kids who have been diagnosed with autism by professionals have autism. They dispute the legitimacy of the diagnosis other than in rare cases. This is the crux of the real dispute playing out here but it only gets represented in agenda driven posts like, see an slp rather than get a full neuropsychology, etc. it’s subtle - not to us, but to an outside observer - but it’s the pushing of an agenda and it’s often hugely and horribly inappropriate and unhelpful for individual parents because it’s a red herring. I understand you can’t regulate this but I’m sick of every post being dominated hey these posters who are frankly on a crusade, so I’m not going to use this forum anymore.

TBH I think this is just too much insider-baseball for Jeff to be able to handle & create a moderation standard around. He's a generalist. It does make me wonder, though, how a forum like this would have fared, say, when the whole anti-vax/vaccines cause autism fraud was being perpetrated. At the end of the day, all you and I and other evidence-minded parents can do is ensure that our comments are made in a way that doesn't derail the discussion.

Or, you could just give the person the help that they ask for, rather than deciding what help they need?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Jeff, a big part of the problem that you don’t and shouldn’t have to frankly understand in the underlying ongoing issues between the “MERLD” parents and their seeming foes, usually parents of children with autism, is that there are longstanding and popular Facebook groups dedicated to avoiding an autism diagnosis and that autism is overdoagnosed. Many of these parents have sought specific labels other than autism. They are very restrictive in the views that are allowed to be presented in the Facebook groups. No mention can be made of ABA or suggestions that something may in fact be autism. Those groups are dedicated to the idea that children grow out of these MERLD issues and that autism is far more serious and debilitating.

Perhaps that may give you some insight as to how this plays out here. The real problem many of the MERLD parents have is with the DSM. They wouldn’t even agree that many of the kids who have been diagnosed with autism by professionals have autism. They dispute the legitimacy of the diagnosis other than in rare cases. This is the crux of the real dispute playing out here but it only gets represented in agenda driven posts like, see an slp rather than get a full neuropsychology, etc. it’s subtle - not to us, but to an outside observer - but it’s the pushing of an agenda and it’s often hugely and horribly inappropriate and unhelpful for individual parents because it’s a red herring. I understand you can’t regulate this but I’m sick of every post being dominated hey these posters who are frankly on a crusade, so I’m not going to use this forum anymore.

TBH I think this is just too much insider-baseball for Jeff to be able to handle & create a moderation standard around. He's a generalist. It does make me wonder, though, how a forum like this would have fared, say, when the whole anti-vax/vaccines cause autism fraud was being perpetrated. At the end of the day, all you and I and other evidence-minded parents can do is ensure that our comments are made in a way that doesn't derail the discussion.

Or, you could just give the person the help that they ask for, rather than deciding what help they need?

As you well know, many people post here with open-ended questions prior to diagnosis. Given the prevalence of autism, many of those OPs will have autistic kids. It's perfectly appropriate to note that the OP's description warrants and autism evaluation. If someone posts in a way that makes clear that that's not relevant, then yes, nobody should be arguing with them. Likewise, it's on you not to respond to suggestions of ASD evaluations with eyeroll emojies, "not everything is autism", "autism is just a checklist diagnosis", etc.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Jeff, a big part of the problem that you don’t and shouldn’t have to frankly understand in the underlying ongoing issues between the “MERLD” parents and their seeming foes, usually parents of children with autism, is that there are longstanding and popular Facebook groups dedicated to avoiding an autism diagnosis and that autism is overdoagnosed. Many of these parents have sought specific labels other than autism. They are very restrictive in the views that are allowed to be presented in the Facebook groups. No mention can be made of ABA or suggestions that something may in fact be autism. Those groups are dedicated to the idea that children grow out of these MERLD issues and that autism is far more serious and debilitating.

Perhaps that may give you some insight as to how this plays out here. The real problem many of the MERLD parents have is with the DSM. They wouldn’t even agree that many of the kids who have been diagnosed with autism by professionals have autism. They dispute the legitimacy of the diagnosis other than in rare cases. This is the crux of the real dispute playing out here but it only gets represented in agenda driven posts like, see an slp rather than get a full neuropsychology, etc. it’s subtle - not to us, but to an outside observer - but it’s the pushing of an agenda and it’s often hugely and horribly inappropriate and unhelpful for individual parents because it’s a red herring. I understand you can’t regulate this but I’m sick of every post being dominated hey these posters who are frankly on a crusade, so I’m not going to use this forum anymore.

TBH I think this is just too much insider-baseball for Jeff to be able to handle & create a moderation standard around. He's a generalist. It does make me wonder, though, how a forum like this would have fared, say, when the whole anti-vax/vaccines cause autism fraud was being perpetrated. At the end of the day, all you and I and other evidence-minded parents can do is ensure that our comments are made in a way that doesn't derail the discussion.

Or, you could just give the person the help that they ask for, rather than deciding what help they need?

As you well know, many people post here with open-ended questions prior to diagnosis. Given the prevalence of autism, many of those OPs will have autistic kids. It's perfectly appropriate to note that the OP's description warrants and autism evaluation. If someone posts in a way that makes clear that that's not relevant, then yes, nobody should be arguing with them. Likewise, it's on you not to respond to suggestions of ASD evaluations with eyeroll emojies, "not everything is autism", "autism is just a checklist diagnosis", etc.

Also, it would be helpful for the sake of this discussion if you clarify what you mean, because I don't think you have. Is your view that nobody should ever suggest an autism evaluation? Or say that behaviors described by an OP may be autism red flags? Do you think an autism evaluation should only be raised when the OP says "should I get an autism evaluation"? Is your position the same for suggesting any kind of evaluation or diagnosis? Do you believe that no diagnosis should ever be mentioned unless expressly asked about by name, and that all responses should just be "ask your pediatrician"?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Jeff, a big part of the problem that you don’t and shouldn’t have to frankly understand in the underlying ongoing issues between the “MERLD” parents and their seeming foes, usually parents of children with autism, is that there are longstanding and popular Facebook groups dedicated to avoiding an autism diagnosis and that autism is overdoagnosed. Many of these parents have sought specific labels other than autism. They are very restrictive in the views that are allowed to be presented in the Facebook groups. No mention can be made of ABA or suggestions that something may in fact be autism. Those groups are dedicated to the idea that children grow out of these MERLD issues and that autism is far more serious and debilitating.

Perhaps that may give you some insight as to how this plays out here. The real problem many of the MERLD parents have is with the DSM. They wouldn’t even agree that many of the kids who have been diagnosed with autism by professionals have autism. They dispute the legitimacy of the diagnosis other than in rare cases. This is the crux of the real dispute playing out here but it only gets represented in agenda driven posts like, see an slp rather than get a full neuropsychology, etc. it’s subtle - not to us, but to an outside observer - but it’s the pushing of an agenda and it’s often hugely and horribly inappropriate and unhelpful for individual parents because it’s a red herring. I understand you can’t regulate this but I’m sick of every post being dominated hey these posters who are frankly on a crusade, so I’m not going to use this forum anymore.

TBH I think this is just too much insider-baseball for Jeff to be able to handle & create a moderation standard around. He's a generalist. It does make me wonder, though, how a forum like this would have fared, say, when the whole anti-vax/vaccines cause autism fraud was being perpetrated. At the end of the day, all you and I and other evidence-minded parents can do is ensure that our comments are made in a way that doesn't derail the discussion.

Or, you could just give the person the help that they ask for, rather than deciding what help they need?

As you well know, many people post here with open-ended questions prior to diagnosis. Given the prevalence of autism, many of those OPs will have autistic kids. It's perfectly appropriate to note that the OP's description warrants and autism evaluation. If someone posts in a way that makes clear that that's not relevant, then yes, nobody should be arguing with them. Likewise, it's on you not to respond to suggestions of ASD evaluations with eyeroll emojies, "not everything is autism", "autism is just a checklist diagnosis", etc.

Also, it would be helpful for the sake of this discussion if you clarify what you mean, because I don't think you have. Is your view that nobody should ever suggest an autism evaluation? Or say that behaviors described by an OP may be autism red flags? Do you think an autism evaluation should only be raised when the OP says "should I get an autism evaluation"? Is your position the same for suggesting any kind of evaluation or diagnosis? Do you believe that no diagnosis should ever be mentioned unless expressly asked about by name, and that all responses should just be "ask your pediatrician"?

DP, but you are deliberately misrepresenting and being argumentative. Everyone is tired of this. (Except you, I suppose.)

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Jeff, a big part of the problem that you don’t and shouldn’t have to frankly understand in the underlying ongoing issues between the “MERLD” parents and their seeming foes, usually parents of children with autism, is that there are longstanding and popular Facebook groups dedicated to avoiding an autism diagnosis and that autism is overdoagnosed. Many of these parents have sought specific labels other than autism. They are very restrictive in the views that are allowed to be presented in the Facebook groups. No mention can be made of ABA or suggestions that something may in fact be autism. Those groups are dedicated to the idea that children grow out of these MERLD issues and that autism is far more serious and debilitating.

Perhaps that may give you some insight as to how this plays out here. The real problem many of the MERLD parents have is with the DSM. They wouldn’t even agree that many of the kids who have been diagnosed with autism by professionals have autism. They dispute the legitimacy of the diagnosis other than in rare cases. This is the crux of the real dispute playing out here but it only gets represented in agenda driven posts like, see an slp rather than get a full neuropsychology, etc. it’s subtle - not to us, but to an outside observer - but it’s the pushing of an agenda and it’s often hugely and horribly inappropriate and unhelpful for individual parents because it’s a red herring. I understand you can’t regulate this but I’m sick of every post being dominated hey these posters who are frankly on a crusade, so I’m not going to use this forum anymore.

TBH I think this is just too much insider-baseball for Jeff to be able to handle & create a moderation standard around. He's a generalist. It does make me wonder, though, how a forum like this would have fared, say, when the whole anti-vax/vaccines cause autism fraud was being perpetrated. At the end of the day, all you and I and other evidence-minded parents can do is ensure that our comments are made in a way that doesn't derail the discussion.

Or, you could just give the person the help that they ask for, rather than deciding what help they need?

As you well know, many people post here with open-ended questions prior to diagnosis. Given the prevalence of autism, many of those OPs will have autistic kids. It's perfectly appropriate to note that the OP's description warrants and autism evaluation. If someone posts in a way that makes clear that that's not relevant, then yes, nobody should be arguing with them. Likewise, it's on you not to respond to suggestions of ASD evaluations with eyeroll emojies, "not everything is autism", "autism is just a checklist diagnosis", etc.

Also, it would be helpful for the sake of this discussion if you clarify what you mean, because I don't think you have. Is your view that nobody should ever suggest an autism evaluation? Or say that behaviors described by an OP may be autism red flags? Do you think an autism evaluation should only be raised when the OP says "should I get an autism evaluation"? Is your position the same for suggesting any kind of evaluation or diagnosis? Do you believe that no diagnosis should ever be mentioned unless expressly asked about by name, and that all responses should just be "ask your pediatrician"?

DP, but you are deliberately misrepresenting and being argumentative. Everyone is tired of this. (Except you, I suppose.)

+1 Nobody has said that, and certainly not Jeff. You are misrepresenting.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Jeff, a big part of the problem that you don’t and shouldn’t have to frankly understand in the underlying ongoing issues between the “MERLD” parents and their seeming foes, usually parents of children with autism, is that there are longstanding and popular Facebook groups dedicated to avoiding an autism diagnosis and that autism is overdoagnosed. Many of these parents have sought specific labels other than autism. They are very restrictive in the views that are allowed to be presented in the Facebook groups. No mention can be made of ABA or suggestions that something may in fact be autism. Those groups are dedicated to the idea that children grow out of these MERLD issues and that autism is far more serious and debilitating.

Perhaps that may give you some insight as to how this plays out here. The real problem many of the MERLD parents have is with the DSM. They wouldn’t even agree that many of the kids who have been diagnosed with autism by professionals have autism. They dispute the legitimacy of the diagnosis other than in rare cases. This is the crux of the real dispute playing out here but it only gets represented in agenda driven posts like, see an slp rather than get a full neuropsychology, etc. it’s subtle - not to us, but to an outside observer - but it’s the pushing of an agenda and it’s often hugely and horribly inappropriate and unhelpful for individual parents because it’s a red herring. I understand you can’t regulate this but I’m sick of every post being dominated hey these posters who are frankly on a crusade, so I’m not going to use this forum anymore.

TBH I think this is just too much insider-baseball for Jeff to be able to handle & create a moderation standard around. He's a generalist. It does make me wonder, though, how a forum like this would have fared, say, when the whole anti-vax/vaccines cause autism fraud was being perpetrated. At the end of the day, all you and I and other evidence-minded parents can do is ensure that our comments are made in a way that doesn't derail the discussion.

Or, you could just give the person the help that they ask for, rather than deciding what help they need?

As you well know, many people post here with open-ended questions prior to diagnosis. Given the prevalence of autism, many of those OPs will have autistic kids. It's perfectly appropriate to note that the OP's description warrants and autism evaluation. If someone posts in a way that makes clear that that's not relevant, then yes, nobody should be arguing with them. Likewise, it's on you not to respond to suggestions of ASD evaluations with eyeroll emojies, "not everything is autism", "autism is just a checklist diagnosis", etc.

Also, it would be helpful for the sake of this discussion if you clarify what you mean, because I don't think you have. Is your view that nobody should ever suggest an autism evaluation? Or say that behaviors described by an OP may be autism red flags? Do you think an autism evaluation should only be raised when the OP says "should I get an autism evaluation"? Is your position the same for suggesting any kind of evaluation or diagnosis? Do you believe that no diagnosis should ever be mentioned unless expressly asked about by name, and that all responses should just be "ask your pediatrician"?

DP, but you are deliberately misrepresenting and being argumentative. Everyone is tired of this. (Except you, I suppose.)

Which, again, proves the point of the original message.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Jeff, a big part of the problem that you don’t and shouldn’t have to frankly understand in the underlying ongoing issues between the “MERLD” parents and their seeming foes, usually parents of children with autism, is that there are longstanding and popular Facebook groups dedicated to avoiding an autism diagnosis and that autism is overdoagnosed. Many of these parents have sought specific labels other than autism. They are very restrictive in the views that are allowed to be presented in the Facebook groups. No mention can be made of ABA or suggestions that something may in fact be autism. Those groups are dedicated to the idea that children grow out of these MERLD issues and that autism is far more serious and debilitating.

Perhaps that may give you some insight as to how this plays out here. The real problem many of the MERLD parents have is with the DSM. They wouldn’t even agree that many of the kids who have been diagnosed with autism by professionals have autism. They dispute the legitimacy of the diagnosis other than in rare cases. This is the crux of the real dispute playing out here but it only gets represented in agenda driven posts like, see an slp rather than get a full neuropsychology, etc. it’s subtle - not to us, but to an outside observer - but it’s the pushing of an agenda and it’s often hugely and horribly inappropriate and unhelpful for individual parents because it’s a red herring. I understand you can’t regulate this but I’m sick of every post being dominated hey these posters who are frankly on a crusade, so I’m not going to use this forum anymore.

And I can assure you that the most frequent MERLD posters on here are very active in those facebook groups, where discussion of autism is verboten. Limiting it here also - which is what they are interpreting this to mean - is not a good idea. This is a lot like the anti-vax posters. I believe in free speech, but pushing agendas om vulnerable and scared parents - you must go the Tennesse! ABA will ruin your child! - ugh. It is really upsetting. And BTW, my kid doesn't even have autism.

How can you assure that? You clearly don't understand language disorders and no, we aren't all on the facebook groups. I am not. I was on for a few months, met and talked to some of the posters here who were really helpful when I needed the support and then left years ago. You are welcome to check my facebook group, my computer, etc. and see what i am active on or not.

What is you real hostility to language disorders?

Your description of everything you listed is completely wrong with many of us. You are too busy pushing your agenda.

You don't believe in free speech for everyone, just your free speech.

Most providers don't recommend a neuropsych until age six or seven as kids can catch up, progress or have completely different needs. The focus is on therapies and early intervention. We were told by our providers that insurance would pay at age 7, if they determined it was necessary. They key is if they determined it necessary.

For some kids, they outgrow language disorders. For some kids, it becomes pretty mild and they learn to adapt and cope with it. For some kids, its a life long issue. There is no one size fits all for language disorders or ASD but to lump them together makes no sense as the needs are very different. But, if it makes you feel better, sure, all our kids have ASD.

You choose to get a neuropsych for your child as that was the best evaluation for your child's needs. That makes sense. We choose the evaluations and therapies that make most sense for our kids and often recommended by our providers. It also makes sense for some of us to get second opinions for a variety of reasons, including rule in or rule out of ASD. Clearly you got a second opinion, if not multiple opinions. Why is it ok for you to do it, but not the rest of us?

Since you love to advocate your opinions, why don't you become a advocate and not charge families? Many are tapped out financially paying for services so having someone to go to to get a proper IEP and school placements would be great. Lots of ways to use your talent and knowledge without being a bully, abusive or demeaning to other families.

[Anonymous]

I think we’ve reached a point of deliberate obtuseness on the part of certain posters.

[Anonymous]

How is Jeff to blame when he probably doesn't even know what MERLD is and probably knows ASD but nothing specific let alone the differences or different therapies, evaluations and schools? Jeff is offering a forum for everyone to come together and learn from each other. He is not a facilitator or subject matter expert. Its pretty sad that posters go from attacking others to attacking him.

I'm sorry if some people here are having difficulties with their kids, families and getting the help they need. But, instead of attacking each other, lets all try to help and share our resource and knowledge to benefit everyone, including people who read but are too scared to post.

I don't get why people feel the need to treat others how they do. Your kids learn from the behaviors you model. Do you want your kids to be mean kids and bullies? That is exactly what they are learning from you.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Jeff, a big part of the problem that you don’t and shouldn’t have to frankly understand in the underlying ongoing issues between the “MERLD” parents and their seeming foes, usually parents of children with autism, is that there are longstanding and popular Facebook groups dedicated to avoiding an autism diagnosis and that autism is overdoagnosed. Many of these parents have sought specific labels other than autism. They are very restrictive in the views that are allowed to be presented in the Facebook groups. No mention can be made of ABA or suggestions that something may in fact be autism. Those groups are dedicated to the idea that children grow out of these MERLD issues and that autism is far more serious and debilitating.

Perhaps that may give you some insight as to how this plays out here. The real problem many of the MERLD parents have is with the DSM. They wouldn’t even agree that many of the kids who have been diagnosed with autism by professionals have autism. They dispute the legitimacy of the diagnosis other than in rare cases. This is the crux of the real dispute playing out here but it only gets represented in agenda driven posts like, see an slp rather than get a full neuropsychology, etc. it’s subtle - not to us, but to an outside observer - but it’s the pushing of an agenda and it’s often hugely and horribly inappropriate and unhelpful for individual parents because it’s a red herring. I understand you can’t regulate this but I’m sick of every post being dominated hey these posters who are frankly on a crusade, so I’m not going to use this forum anymore.

TBH I think this is just too much insider-baseball for Jeff to be able to handle & create a moderation standard around. He's a generalist. It does make me wonder, though, how a forum like this would have fared, say, when the whole anti-vax/vaccines cause autism fraud was being perpetrated. At the end of the day, all you and I and other evidence-minded parents can do is ensure that our comments are made in a way that doesn't derail the discussion.

Or, you could just give the person the help that they ask for, rather than deciding what help they need?

As you well know, many people post here with open-ended questions prior to diagnosis. Given the prevalence of autism, many of those OPs will have autistic kids. It's perfectly appropriate to note that the OP's description warrants and autism evaluation. If someone posts in a way that makes clear that that's not relevant, then yes, nobody should be arguing with them. Likewise, it's on you not to respond to suggestions of ASD evaluations with eyeroll emojies, "not everything is autism", "autism is just a checklist diagnosis", etc.

Also, it would be helpful for the sake of this discussion if you clarify what you mean, because I don't think you have. Is your view that nobody should ever suggest an autism evaluation? Or say that behaviors described by an OP may be autism red flags? Do you think an autism evaluation should only be raised when the OP says "should I get an autism evaluation"? Is your position the same for suggesting any kind of evaluation or diagnosis? Do you believe that no diagnosis should ever be mentioned unless expressly asked about by name, and that all responses should just be "ask your pediatrician"?

No you should not be recommending a specific evaluation. You should be recommending a thorough evaluation with a skilled doctor who excels at differential diagnosis.


What is hard about that?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Jeff, a big part of the problem that you don’t and shouldn’t have to frankly understand in the underlying ongoing issues between the “MERLD” parents and their seeming foes, usually parents of children with autism, is that there are longstanding and popular Facebook groups dedicated to avoiding an autism diagnosis and that autism is overdoagnosed. Many of these parents have sought specific labels other than autism. They are very restrictive in the views that are allowed to be presented in the Facebook groups. No mention can be made of ABA or suggestions that something may in fact be autism. Those groups are dedicated to the idea that children grow out of these MERLD issues and that autism is far more serious and debilitating.

Perhaps that may give you some insight as to how this plays out here. The real problem many of the MERLD parents have is with the DSM. They wouldn’t even agree that many of the kids who have been diagnosed with autism by professionals have autism. They dispute the legitimacy of the diagnosis other than in rare cases. This is the crux of the real dispute playing out here but it only gets represented in agenda driven posts like, see an slp rather than get a full neuropsychology, etc. it’s subtle - not to us, but to an outside observer - but it’s the pushing of an agenda and it’s often hugely and horribly inappropriate and unhelpful for individual parents because it’s a red herring. I understand you can’t regulate this but I’m sick of every post being dominated hey these posters who are frankly on a crusade, so I’m not going to use this forum anymore.

TBH I think this is just too much insider-baseball for Jeff to be able to handle & create a moderation standard around. He's a generalist. It does make me wonder, though, how a forum like this would have fared, say, when the whole anti-vax/vaccines cause autism fraud was being perpetrated. At the end of the day, all you and I and other evidence-minded parents can do is ensure that our comments are made in a way that doesn't derail the discussion.

Or, you could just give the person the help that they ask for, rather than deciding what help they need?

As you well know, many people post here with open-ended questions prior to diagnosis. Given the prevalence of autism, many of those OPs will have autistic kids. It's perfectly appropriate to note that the OP's description warrants and autism evaluation. If someone posts in a way that makes clear that that's not relevant, then yes, nobody should be arguing with them. Likewise, it's on you not to respond to suggestions of ASD evaluations with eyeroll emojies, "not everything is autism", "autism is just a checklist diagnosis", etc.

Also, it would be helpful for the sake of this discussion if you clarify what you mean, because I don't think you have. Is your view that nobody should ever suggest an autism evaluation? Or say that behaviors described by an OP may be autism red flags? Do you think an autism evaluation should only be raised when the OP says "should I get an autism evaluation"? Is your position the same for suggesting any kind of evaluation or diagnosis? Do you believe that no diagnosis should ever be mentioned unless expressly asked about by name, and that all responses should just be "ask your pediatrician"?

DP, but you are deliberately misrepresenting and being argumentative. Everyone is tired of this. (Except you, I suppose.)

+1 Nobody has said that, and certainly not Jeff. You are misrepresenting.

+2. I think we've identified the source of the problem.

[Anonymous]

I think it would be helpful if people posted what their experience has been with their kid, or why they are giving the advice (teacher, researcher, etc,.). Giving context doesn't take that long.