Reminder about the purpose of the Kids with Special Needs Forum

[Anonymous]

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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.

multiple people have said exactly that - read the thread.

I did.read thread, I am just reinforcing what the others already.said.

ok so we all agree there’s no problem with raising and dx or evaluation in a respectful and responsive manner. done.

[Anonymous]

omg.

[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.

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.

Actually, my child has a language disorder among other issues. So wildly off base in all regards. I have no idea what you are going on about, honestly, but you clearly are one of the posters I was talking about that derails with the tired old MERLD agenda.

This isn't very believable. If your child doesn't have autism, why do you insist on mentioning autism to everyone? Why do you disparage other parents with language disorders?

It is believable as children can have both a language disorder and ASD. It also may be pragmatics or stuttering and not receptive, expressive or apraxia. They were probably first diagnosed as a language disorder and the ASD was missed so this poster couldn't get therapies under insurance and then later they did a neuropsych or multiple evaluations and the ASD and other things finally got diagnosed.

guys let’s get back to the main point! it is ok to mention autism, language disorders, and your experience as long as it’s responsive, not fighty, and does not derail the thread.

[Anonymous]

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Anonymous wrote:Thanks Jeff for all that you do.

I've been personally frustrated by a few people with agendas who always want to deny that conditions like PANDAS or Lyme are even real. My kid has had both and they are all too real, and the denial of them can be dangerous. I always try to respond to parents asking questions about these conditions, having been through them and having learned so much. But when I do I am almost always met with someone who wants to state definitively that these aren't real, which is not just counterproductive but personally invalidating and hurtful after all that we've been through.

I think that's what really gets to me - the invalidation of my own lived and painful experience.

If you want to post about your personal experience, fine. But the way PANDAS and Lyme come up is that a parent says “is this PANDAS”? and people respond with the very real, very substantial questions about PANDAS and Lyme. Yes this could be done in a more or less derailing way. But it’s not invalidating to you when someone comments to *someone else* about the serious issues surrounding those diagnoses.

yup, here we do. I think we just found another one.

go not do

how so? if someone posts factual information about PANDAS and Lyme, that’s ok, as long as it’s responsive, not argumentative, and not derailing.

The problem is that someone or some people have an agenda to prove these conditions don't exist and they come out with that every time they come up. Every time.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Thanks Jeff for all that you do.

I've been personally frustrated by a few people with agendas who always want to deny that conditions like PANDAS or Lyme are even real. My kid has had both and they are all too real, and the denial of them can be dangerous. I always try to respond to parents asking questions about these conditions, having been through them and having learned so much. But when I do I am almost always met with someone who wants to state definitively that these aren't real, which is not just counterproductive but personally invalidating and hurtful after all that we've been through.

I think that's what really gets to me - the invalidation of my own lived and painful experience.

If you want to post about your personal experience, fine. But the way PANDAS and Lyme come up is that a parent says “is this PANDAS”? and people respond with the very real, very substantial questions about PANDAS and Lyme. Yes this could be done in a more or less derailing way. But it’s not invalidating to you when someone comments to *someone else* about the serious issues surrounding those diagnoses.

yup, here we do. I think we just found another one.

go not do

how so? if someone posts factual information about PANDAS and Lyme, that’s ok, as long as it’s responsive, not argumentative, and not derailing.

The problem is that someone or some people have an agenda to prove these conditions don't exist and they come out with that every time they come up. Every time.

I would hope everyone agrees that Lyme exists especially when there is a blood test to prove it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Thanks Jeff for all that you do.

I've been personally frustrated by a few people with agendas who always want to deny that conditions like PANDAS or Lyme are even real. My kid has had both and they are all too real, and the denial of them can be dangerous. I always try to respond to parents asking questions about these conditions, having been through them and having learned so much. But when I do I am almost always met with someone who wants to state definitively that these aren't real, which is not just counterproductive but personally invalidating and hurtful after all that we've been through.

I think that's what really gets to me - the invalidation of my own lived and painful experience.

If you want to post about your personal experience, fine. But the way PANDAS and Lyme come up is that a parent says “is this PANDAS”? and people respond with the very real, very substantial questions about PANDAS and Lyme. Yes this could be done in a more or less derailing way. But it’s not invalidating to you when someone comments to *someone else* about the serious issues surrounding those diagnoses.

yup, here we do. I think we just found another one.

go not do

how so? if someone posts factual information about PANDAS and Lyme, that’s ok, as long as it’s responsive, not argumentative, and not derailing.

The problem is that someone or some people have an agenda to prove these conditions don't exist and they come out with that every time they come up. Every time.

factual information that is not argumentative or derailing is ok. in some cases this could definitely include a variety of sources & research on PANDAS and Lyme.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Thanks Jeff for all that you do.

I've been personally frustrated by a few people with agendas who always want to deny that conditions like PANDAS or Lyme are even real. My kid has had both and they are all too real, and the denial of them can be dangerous. I always try to respond to parents asking questions about these conditions, having been through them and having learned so much. But when I do I am almost always met with someone who wants to state definitively that these aren't real, which is not just counterproductive but personally invalidating and hurtful after all that we've been through.

I think that's what really gets to me - the invalidation of my own lived and painful experience.

If you want to post about your personal experience, fine. But the way PANDAS and Lyme come up is that a parent says “is this PANDAS”? and people respond with the very real, very substantial questions about PANDAS and Lyme. Yes this could be done in a more or less derailing way. But it’s not invalidating to you when someone comments to *someone else* about the serious issues surrounding those diagnoses.

yup, here we do. I think we just found another one.

go not do

how so? if someone posts factual information about PANDAS and Lyme, that’s ok, as long as it’s responsive, not argumentative, and not derailing.

The problem is that someone or some people have an agenda to prove these conditions don't exist and they come out with that every time they come up. Every time.

I would hope everyone agrees that Lyme exists especially when there is a blood test to prove it.

right - so a reasonable thread could include information on legitimate lyme testing from the CDC.

[Anonymous]

Thank you, Jeff, for taking the time to provide special moderation for this forum.

[Anonymous]

Jeff and Maria, you all have changed my life in a wonderful way, by allowing a forum exchange with relevent info, unique and specific to this area. Even though I do not post much in this forum, I am a SN parent, and I have felt so much support from the tone and information shared here by other parents.

Thank you for having a backbone, setting boundaries, making them clear, and allowing for a respectful exchange. You two are awesome moderators.

Thank you!

[Anonymous]

Can we please, please, please sticky this thread?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Thanks Jeff for all that you do.

I've been personally frustrated by a few people with agendas who always want to deny that conditions like PANDAS or Lyme are even real. My kid has had both and they are all too real, and the denial of them can be dangerous. I always try to respond to parents asking questions about these conditions, having been through them and having learned so much. But when I do I am almost always met with someone who wants to state definitively that these aren't real, which is not just counterproductive but personally invalidating and hurtful after all that we've been through.

I think that's what really gets to me - the invalidation of my own lived and painful experience.

If you want to post about your personal experience, fine. But the way PANDAS and Lyme come up is that a parent says “is this PANDAS”? and people respond with the very real, very substantial questions about PANDAS and Lyme. Yes this could be done in a more or less derailing way. But it’s not invalidating to you when someone comments to *someone else* about the serious issues surrounding those diagnoses.

yup, here we do. I think we just found another one.

go not do

how so? if someone posts factual information about PANDAS and Lyme, that’s ok, as long as it’s responsive, not argumentative, and not derailing.

The problem is that someone or some people have an agenda to prove these conditions don't exist and they come out with that every time they come up. Every time.

I would hope everyone agrees that Lyme exists especially when there is a blood test to prove it.

right - so a reasonable thread could include information on legitimate lyme testing from the CDC.

If someone asks specifically. Not a random post about it when the topic is completely different.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Thanks Jeff for all that you do.

I've been personally frustrated by a few people with agendas who always want to deny that conditions like PANDAS or Lyme are even real. My kid has had both and they are all too real, and the denial of them can be dangerous. I always try to respond to parents asking questions about these conditions, having been through them and having learned so much. But when I do I am almost always met with someone who wants to state definitively that these aren't real, which is not just counterproductive but personally invalidating and hurtful after all that we've been through.

I think that's what really gets to me - the invalidation of my own lived and painful experience.

If you want to post about your personal experience, fine. But the way PANDAS and Lyme come up is that a parent says “is this PANDAS”? and people respond with the very real, very substantial questions about PANDAS and Lyme. Yes this could be done in a more or less derailing way. But it’s not invalidating to you when someone comments to *someone else* about the serious issues surrounding those diagnoses.

yup, here we do. I think we just found another one.

go not do

how so? if someone posts factual information about PANDAS and Lyme, that’s ok, as long as it’s responsive, not argumentative, and not derailing.

The problem is that someone or some people have an agenda to prove these conditions don't exist and they come out with that every time they come up. Every time.

I would hope everyone agrees that Lyme exists especially when there is a blood test to prove it.

right - so a reasonable thread could include information on legitimate lyme testing from the CDC.

If someone asks specifically. Not a random post about it when the topic is completely different.

I would say the standard is "factual, non-derailing, non-fighty is ok." there's no clear delineation about people asking specifically. if people knew what to specifically ask for, they likely wouldn't be here. Yes, sometimes there are very specific questions, but it's usually not that clear-cut. We ALL need to drop agendas (I admit I have mine) and focus on factual, non-derailing, and non-fighty. Special pleading or special rules for special conditions are going to make this forum much harder to use .. although I wouldn't blame Jeff for going there if people can't reign it in. Factual, non-derailing, non-fighty. I think we can all do that.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Thanks Jeff for all that you do.

I've been personally frustrated by a few people with agendas who always want to deny that conditions like PANDAS or Lyme are even real. My kid has had both and they are all too real, and the denial of them can be dangerous. I always try to respond to parents asking questions about these conditions, having been through them and having learned so much. But when I do I am almost always met with someone who wants to state definitively that these aren't real, which is not just counterproductive but personally invalidating and hurtful after all that we've been through.

I think that's what really gets to me - the invalidation of my own lived and painful experience.

If you want to post about your personal experience, fine. But the way PANDAS and Lyme come up is that a parent says “is this PANDAS”? and people respond with the very real, very substantial questions about PANDAS and Lyme. Yes this could be done in a more or less derailing way. But it’s not invalidating to you when someone comments to *someone else* about the serious issues surrounding those diagnoses.

yup, here we do. I think we just found another one.

go not do

how so? if someone posts factual information about PANDAS and Lyme, that’s ok, as long as it’s responsive, not argumentative, and not derailing.

The problem is that someone or some people have an agenda to prove these conditions don't exist and they come out with that every time they come up. Every time.

I would hope everyone agrees that Lyme exists especially when there is a blood test to prove it.

right - so a reasonable thread could include information on legitimate lyme testing from the CDC.

If someone asks specifically. Not a random post about it when the topic is completely different.

I would say the standard is "factual, non-derailing, non-fighty is ok." there's no clear delineation about people asking specifically. if people knew what to specifically ask for, they likely wouldn't be here. Yes, sometimes there are very specific questions, but it's usually not that clear-cut. We ALL need to drop agendas (I admit I have mine) and focus on factual, non-derailing, and non-fighty. Special pleading or special rules for special conditions are going to make this forum much harder to use .. although I wouldn't blame Jeff for going there if people can't reign it in. Factual, non-derailing, non-fighty. I think we can all do that.

A doctor should be making diagnosis and working with a family and if the family is concerned they should go for a second opinion. Diagnosis should not be made over the internet. Any good evaluation beyond all the data testing and observations (neuropsych, developmental, speech, psycho-educaitonal and any others I'm forgetting) should include a physical exam, blood tests, genetic testing, hearing exam (if language or other concerns) and an eye exam (especially for LD's). Most of us have done that. The appropriate thing would suggest these as options for diagnosis.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Thanks Jeff for all that you do.

I've been personally frustrated by a few people with agendas who always want to deny that conditions like PANDAS or Lyme are even real. My kid has had both and they are all too real, and the denial of them can be dangerous. I always try to respond to parents asking questions about these conditions, having been through them and having learned so much. But when I do I am almost always met with someone who wants to state definitively that these aren't real, which is not just counterproductive but personally invalidating and hurtful after all that we've been through.

I think that's what really gets to me - the invalidation of my own lived and painful experience.

If you want to post about your personal experience, fine. But the way PANDAS and Lyme come up is that a parent says “is this PANDAS”? and people respond with the very real, very substantial questions about PANDAS and Lyme. Yes this could be done in a more or less derailing way. But it’s not invalidating to you when someone comments to *someone else* about the serious issues surrounding those diagnoses.

yup, here we do. I think we just found another one.

go not do

how so? if someone posts factual information about PANDAS and Lyme, that’s ok, as long as it’s responsive, not argumentative, and not derailing.

The problem is that someone or some people have an agenda to prove these conditions don't exist and they come out with that every time they come up. Every time.

I would hope everyone agrees that Lyme exists especially when there is a blood test to prove it.

right - so a reasonable thread could include information on legitimate lyme testing from the CDC.

See -- you very clearly have an agenda. Why, I have no idea.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Thanks Jeff for all that you do.

I've been personally frustrated by a few people with agendas who always want to deny that conditions like PANDAS or Lyme are even real. My kid has had both and they are all too real, and the denial of them can be dangerous. I always try to respond to parents asking questions about these conditions, having been through them and having learned so much. But when I do I am almost always met with someone who wants to state definitively that these aren't real, which is not just counterproductive but personally invalidating and hurtful after all that we've been through.

I think that's what really gets to me - the invalidation of my own lived and painful experience.

If you want to post about your personal experience, fine. But the way PANDAS and Lyme come up is that a parent says “is this PANDAS”? and people respond with the very real, very substantial questions about PANDAS and Lyme. Yes this could be done in a more or less derailing way. But it’s not invalidating to you when someone comments to *someone else* about the serious issues surrounding those diagnoses.

yup, here we do. I think we just found another one.

go not do

how so? if someone posts factual information about PANDAS and Lyme, that’s ok, as long as it’s responsive, not argumentative, and not derailing.

The problem is that someone or some people have an agenda to prove these conditions don't exist and they come out with that every time they come up. Every time.

I would hope everyone agrees that Lyme exists especially when there is a blood test to prove it.

right - so a reasonable thread could include information on legitimate lyme testing from the CDC.

See -- you very clearly have an agenda. Why, I have no idea.

They probably have been personally impacted by it and its a very hard to treat, diagnose and can be pretty serious but that's not what is going on with most kids. That should be in the regular medical forum. Maybe we can start them a PANDAS and Lyme thread and just keep bumping it to the top to keep them happy.