Reminder about the purpose of the Kids with Special Needs Forum

[Anonymous]

Anonymous wrote:^This is exactly the problem. ^

Can you be more specific?

[Anonymous]

Summary of what I understand to be the new rules:

- When a poster makes clear that they are not interested in debating the diagnosis, don't debate it
- Never berate a poster insisting that they are wrong about the diagnosis
- Don't engage in repetitive, aggressive argumentation - this includes insisting that people are in denial about autism, or insisting that nothing is autism
- Don't derail the OP by getting on your hobby horse
- It's still ok to suggest possible diagnoses/assessments, as long as all the above are observed
- If you try, it's actually not hard to know when you're being helpful to the OP, and when you're derailing.
- Start your own thread to discuss your hobby horse.


My observation is that there are more than one kind of OP here. Many OPs have very open-ended situations and questions. That may be the time to suggest screenings for autism, ADHD, dyslexia, etc. Other OPs are asking much more specific questions and have moved past the need to talk about assessment & diagnoses.

[Anonymous]

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.

[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.

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.

[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.

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.

[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.

No, the problem is that some posters keep questioning the motives of other posters rather than respond directly with facts. I'm glad you are leaving because I am sick of having my motives questioned.

[Anonymous]

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.

[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.

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.

[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.

No, the problem is that some posters keep questioning the motives of other posters rather than respond directly with facts. I'm glad you are leaving because I am sick of having my motives questioned.

Yes, its much easier to hoodwink people if they don't understand where you are coming from.

[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.

No, the problem is that some posters keep questioning the motives of other posters rather than respond directly with facts. I'm glad you are leaving because I am sick of having my motives questioned.

Yes, its much easier to hoodwink people if they don't understand where you are coming from.

This is what I mean. You don't know anything about me. But you assumed you know where I am coming from and that I am trying to hoodwink people.

[Anonymous]

DP. It's also not just MERLD / autism. The same pattern plays out with dyslexia. And it's annoying.

[Anonymous]

I don't frequent this forum, and don't even know what MERLD means. I'm just bored at work and clicked on a long thread that started with a scold from Jeff.

But if you frequent posters, on both sides, don't see that your conduct *here* is demonstrating the point of Jeff's original post better than any example ever could, you're just not paying attention. Endlessly relitigating what should be acceptable and what shouldn't, when all that is required is accepting the clear and simple guidelines provided . . . sheesh.

If I were Jeff, there's about a dozen of you I'd just preemptively block based on this thread alone.

[Anonymous]

Anonymous wrote:I don't frequent this forum, and don't even know what MERLD means. I'm just bored at work and clicked on a long thread that started with a scold from Jeff.

But if you frequent posters, on both sides, don't see that your conduct *here* is demonstrating the point of Jeff's original post better than any example ever could, you're just not paying attention. Endlessly relitigating what should be acceptable and what shouldn't, when all that is required is accepting the clear and simple guidelines provided . . . sheesh.

If I were Jeff, there's about a dozen of you I'd just preemptively block based on this thread alone.

I accept the guidelines and am saying things here that I would not say on other threads because this is in fact a topic for argumentative insiders. Any post on this thread Jeff doesn't like, he can delete. He has already done that here.

If he wants to ban me based on this thread alone, he can do that too. Or he can lock this thread. But he hasn't done either.of those, so I conclude that this argument on this thread is okay, even if it would not be okay elsewhere.

[Anonymous]

Anonymous wrote:I don't frequent this forum, and don't even know what MERLD means. I'm just bored at work and clicked on a long thread that started with a scold from Jeff.

But if you frequent posters, on both sides, don't see that your conduct *here* is demonstrating the point of Jeff's original post better than any example ever could, you're just not paying attention. Endlessly relitigating what should be acceptable and what shouldn't, when all that is required is accepting the clear and simple guidelines provided . . . sheesh.

If I were Jeff, there's about a dozen of you I'd just preemptively block based on this thread alone.

+1 At least he's been able to identify who the posters are for future block-consideration! I can't believe this has gone on for 10 pages - actually, as a long time user of this forum and witness to how it's changed, I CAN believe it!

[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.

I don't disagree with anything you wrote ... yet, we all have to avoid massive derailing in these threads, in order to keep them useful. That means that the MERLD moms should not be posting "autism is just a checklist, they have no idea how to deal with "language kids"" and that if they do post that, we just need to flag and move on, instead of engaging in the fight.