Reminder about the purpose of the Kids with Special Needs Forum

[Anonymous]

Anonymous wrote: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.

I've done that and been attacked anyway. "Your experience is only with ASD, you know nothing about language disorders..." Another version, "You only saw one neuropsychologist who was wrong, here's the truth..."

[Anonymous]

Anonymous wrote:If somebody is shopping around for a formal diagnosis that does not exist in the DSM-V, why is it offensive and inappropriate to point that?

There will someday be a DSM-VI.

[Anonymous]

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

There's a good chance the same poster or posters are ruining both types of theeads.

[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.

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.

[Anonymous]

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.

[Anonymous]

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

[Anonymous]

Anonymous wrote:

Anonymous wrote: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.

I've done that and been attacked anyway. "Your experience is only with ASD, you know nothing about language disorders..." Another version, "You only saw one neuropsychologist who was wrong, here's the truth..."

You may know ASD but your posts show a lack of understanding about language disorders and your comments are always that it is not a language disorder but a social communication disorder or ASD. If you understood language disorders, your posts would be a very different focus. Neruopsych's are good for older kids, especially with complex concerns but depending on the concern, sometimes targeted evaluations are more beneficial.

[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.

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?

[Anonymous]

Anonymous wrote:

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.

multiple people have said exactly that - read the thread.

[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.

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.

Then, you would understand that there is a host of language disorders and MERLD is only one that identifies a child with both expressive and receptive language concerns. Kids are usually more impacted with MERLD than with an expressive language disorder, who generally catch up eventually. You would also understand that not all kids with language disorders have other issues and some do not. I don't have a MERLD agenda. I don't even use the term anymore. I think its a relevant term as I also think Aspergers is but its not the correct use anymore. .

If the discussion is about MERLD and you have nothing to offer, stay out of it. If you know the resources or can address the concern, then answer it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

I've done that and been attacked anyway. "Your experience is only with ASD, you know nothing about language disorders..." Another version, "You only saw one neuropsychologist who was wrong, here's the truth..."

You may know ASD but your posts show a lack of understanding about language disorders and your comments are always that it is not a language disorder but a social communication disorder or ASD. If you understood language disorders, your posts would be a very different focus. Neruopsych's are good for older kids, especially with complex concerns but depending on the concern, sometimes targeted evaluations are more beneficial.

Another example of a poster making wild assumptions about someone they do not know. I have NEVER said something is not a language disorder. If you knew who you were responding to, you wouldn't confuse them with someone else.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

multiple people have said exactly that - read the thread.

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

[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.

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.

[Anonymous]

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.

Its derailing if its a post about something different. If someone is asking about either, then its an appropriate response. If I asked about my child possibly having a fracture in her arm and you come back with PANDAS or Lyme it makes no sense. If a child was out hiking, camping or playing in the yard and might have gotten a tick, sure, it makes sense.