Reminder about the purpose of the Kids with Special Needs Forum

[Anonymous]

Anonymous wrote:

jsteele wrote:

Anonymous wrote:

Anonymous wrote:

jsteele wrote:

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?

You are making assumptions that I am not sure you are in a position to make. In any case, such posts have disrupted many threads without yielding any observable benefit. Please refrain from posting them.

Whether or not something exists (or does not exist) as a diagnosis in the DSM-5 is not an assumption. It’s a fact.

I’m a long-time consumer of this board as a source of information. If you censor factual information I’m not sure that does a great service.

But it’s your board and you set the rules.

+1.

People need to be constructive in tone. But this board is most valuable when people with knowledge and experience are able to share it. I have seen threads where people get upset that some posters are pushing back on OP’s expectations or views of what someone (such as a school) has done. But OP’s expectations (about the chance of a private placement, for example) were not remotely realistic.

It does OP little good for people to just cheer her on and agree that the school system is wrong. Maybe it makes her fee better, but I think it is much more valuable to provide a reasoned, POLITE explanation of why her expectations are off and what might be more realistic or what steps she would need to take to get where what she wants might be possible.

I also worry that if the countervailing view is not allowed, other posters reading the thread may develop unreasonable or unrealistic expectations. I don’t think that serves the community well and defeats much of the purpose of this board.

Well, since you find push back to be helpful, allow me to push back and say that your post is almost entirely irrelevant to this discussion. In no way have I implied that a "POLITE explanation" would not be allowed. What I am not going to allow any longer is the constant hijacking of threads by posters who repeat the same arguments that have already been repeated multiple times -- generally about whether or not something is ASD (though there are other cases).

Except I have seen such posts deleted. And if you are now going to monitor the board with greater diligence, it is reasonable to assume more such posts will be deleted. So I disagree it is off topic.

More fundamentally, I am really disappointed in your tone to me and the other PP. We have each offered constructive insights into what we believe will make this board more valuable. You have responded with snark and hostility -- on a topic that was started for the express purpose of fostering civility no less.

Of course, you are free to disagree a with us, both generally, and because (as you love to point out) it is your board. But there seems to be no reason for your attitude here.

DP. I have been on this forum longer and more often than I care to admit, and I can say that Jeff does a generally very good job at moderation. I believe that he will able to identify the posts that are truly derailing the conversation. I also believe that if you take care to frame your comment appropriately, you can probably post whatever you want. Because what derails a conversation is not so much the content, but the tone.

[Anonymous]

Anonymous wrote:

jsteele wrote:

Anonymous wrote:

jsteele wrote:

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?

You are making assumptions that I am not sure you are in a position to make. In any case, such posts have disrupted many threads without yielding any observable benefit. Please refrain from posting them.

Whether or not something exists (or does not exist) as a diagnosis in the DSM-5 is not an assumption. It’s a fact.

I’m a long-time consumer of this board as a source of information. If you censor factual information I’m not sure that does a great service.

But it’s your board and you set the rules.

Whether someone is "shopping around for a diagnosis" could only be an assumption unless the poster specifically told you that's what they are doing. I think parents deserve the benefit of the doubt that they are trying to do the best for their children. Similarly, forum moderators who have long track records of maintaining popular forums should not cavalierly be accused of censorship. You may want to give a bit more thought to your language choices.

Case in point. Somebody recently began a thread titled “auditory processing disorder,” and in the very first line of her thread she said she was seeking somebody who could test/diagnose auditory processing disorder.

Fact one: That person was seeking somebody who could test for/diagnose auditory processing disorder. She said so explicitly in the beginning of the post.

Fact two: Auditory Processing Disorder is NOT a diagnosis in the DSM-V.

Fact three: You removed my posting that noted APD is not a diagnosis.

but how did you "note" that? aggressively, or in a helpful way?

[jsteele]

Anonymous wrote:

jsteele wrote:

Anonymous wrote:

jsteele wrote:

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?

You are making assumptions that I am not sure you are in a position to make. In any case, such posts have disrupted many threads without yielding any observable benefit. Please refrain from posting them.

Whether or not something exists (or does not exist) as a diagnosis in the DSM-5 is not an assumption. It’s a fact.

I’m a long-time consumer of this board as a source of information. If you censor factual information I’m not sure that does a great service.

But it’s your board and you set the rules.

Whether someone is "shopping around for a diagnosis" could only be an assumption unless the poster specifically told you that's what they are doing. I think parents deserve the benefit of the doubt that they are trying to do the best for their children. Similarly, forum moderators who have long track records of maintaining popular forums should not cavalierly be accused of censorship. You may want to give a bit more thought to your language choices.

Case in point. Somebody recently began a thread titled “auditory processing disorder,” and in the very first line of her thread she said she was seeking somebody who could test/diagnose auditory processing disorder.

Fact one: That person was seeking somebody who could test for/diagnose auditory processing disorder. She said so explicitly in the beginning of the post.

Fact two: Auditory Processing Disorder is NOT a diagnosis in the DSM-V.

Fact three: You removed my posting that noted APD is not a diagnosis.

Yep, and I hope that you have learned from the experience or you will find a lot more of your posts getting deleted.

In response to the OP you could recommend someone to do the evaluation or you could shut the hell up. Starting an off-topic hijack was not among the appropriate responses. It was exactly that thread that triggered this post.

[Anonymous]

Anonymous wrote:

jsteele wrote:

Anonymous wrote:

jsteele wrote:

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?

You are making assumptions that I am not sure you are in a position to make. In any case, such posts have disrupted many threads without yielding any observable benefit. Please refrain from posting them.

Whether or not something exists (or does not exist) as a diagnosis in the DSM-5 is not an assumption. It’s a fact.

I’m a long-time consumer of this board as a source of information. If you censor factual information I’m not sure that does a great service.

But it’s your board and you set the rules.

Whether someone is "shopping around for a diagnosis" could only be an assumption unless the poster specifically told you that's what they are doing. I think parents deserve the benefit of the doubt that they are trying to do the best for their children. Similarly, forum moderators who have long track records of maintaining popular forums should not cavalierly be accused of censorship. You may want to give a bit more thought to your language choices.

Case in point. Somebody recently began a thread titled “auditory processing disorder,” and in the very first line of her thread she said she was seeking somebody who could test/diagnose auditory processing disorder.

Fact one: That person was seeking somebody who could test for/diagnose auditory processing disorder. She said so explicitly in the beginning of the post.

Fact two: Auditory Processing Disorder is NOT a diagnosis in the DSM-V.

Fact three: You removed my posting that noted APD is not a diagnosis.

Some of my posts saying the same thing were removed too, but I see that other similar posts remained. There were a lot of good and bad posts mixed together, so at worst he was a bit overzealous in cleaning up the thread.

[Anonymous]

Fact four: many don’t GAF if Auditory Processing Disorder is a diagnosis in the DSM-V.

[Anonymous]

I am the SN teacher/mom. I have directly benefitted from the tough love posters at various parts of my journey. It is part of the reason I come to this board. I know where to go for an echo chamber & I come here for the range of ideas.
I hope we can tolerate that range. Sometimes speaking the truth does change outcomes. I’ve benefitted from posters on this board breaking through my denial

[Anonymous]

jsteele wrote:

Anonymous wrote:

jsteele wrote:

Anonymous wrote:

jsteele wrote:

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?

You are making assumptions that I am not sure you are in a position to make. In any case, such posts have disrupted many threads without yielding any observable benefit. Please refrain from posting them.

Whether or not something exists (or does not exist) as a diagnosis in the DSM-5 is not an assumption. It’s a fact.

I’m a long-time consumer of this board as a source of information. If you censor factual information I’m not sure that does a great service.

But it’s your board and you set the rules.

Whether someone is "shopping around for a diagnosis" could only be an assumption unless the poster specifically told you that's what they are doing. I think parents deserve the benefit of the doubt that they are trying to do the best for their children. Similarly, forum moderators who have long track records of maintaining popular forums should not cavalierly be accused of censorship. You may want to give a bit more thought to your language choices.

Case in point. Somebody recently began a thread titled “auditory processing disorder,” and in the very first line of her thread she said she was seeking somebody who could test/diagnose auditory processing disorder.

Fact one: That person was seeking somebody who could test for/diagnose auditory processing disorder. She said so explicitly in the beginning of the post.

Fact two: Auditory Processing Disorder is NOT a diagnosis in the DSM-V.

Fact three: You removed my posting that noted APD is not a diagnosis.

Yep, and I hope that you have learned from the experience or you will find a lot more of your posts getting deleted.

In response to the OP you could recommend someone to do the evaluation or you could shut the hell up. Starting an off-topic hijack was not among the appropriate responses. It was exactly that thread that triggered this post.

DP. I do think it's important to be able to raise that a condition is not in the DSM. That's pretty basic. People often wander in here saying that their child has been diagnosed with SPD, which is a big indicator that something else is going on.

[Anonymous]

Anonymous wrote:I am the SN teacher/mom. I have directly benefitted from the tough love posters at various parts of my journey. It is part of the reason I come to this board. I know where to go for an echo chamber & I come here for the range of ideas.
I hope we can tolerate that range. Sometimes speaking the truth does change outcomes. I’ve benefitted from posters on this board breaking through my denial

true. my first posts here were describing my 3 year old's adjustment issues in preschool and posters tried to tell me it was autism ... but didn't get the diagnosis until a full 3 years later.

[Anonymous]

Anonymous wrote:Fact four: many don’t GAF if Auditory Processing Disorder is a diagnosis in the DSM-V.

Perhaps. But insurance companies and school systems care, as they won’t recognize and provide services for conditions that aren’t in the DSM-V.

I don’t personally think that noting this is hijacking a thread or unhelpful.

[Anonymous]

Some of the autism moms on here go ballistic if anyone dares to say they don’t think certain issues sound like autism. Disagreement is fine. Name calling is totally unacceptable.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Fact four: many don’t GAF if Auditory Processing Disorder is a diagnosis in the DSM-V.

Perhaps. But insurance companies and school systems care, as they won’t recognize and provide services for conditions that aren’t in the DSM-V.

I don’t personally think that noting this is hijacking a thread or unhelpful.

The reason the DSM is on version V is because it is continually being revised based on greater research and experience. If the OP is not asking about insurance coverage, it doesn’t matter what the diagnosis code ends up being.

[jsteele]

I am not going to respond to every post, but I will use the example of the Auditory Processing Disorder thread to help clarify my position. The OP of that thread very specifically requested a recommendation for an audiologist who could test or diagnose for APD. Posters jumped into tell her that there is no such thing as APD while others said that their children had such a diagnosis. Some posters suggested that a neuropsych exam should be done instead, while others argued this was a waste of money. Then posters who apparently recognized each other from previous threads engaged in what appear to be long-running arguments with each other. The OP was essentially forgotten. At some point I am pretty sure the entire thread turned to discussion of someone else's kid. This sort of thing has happened repeatedly and I will no longer tolerate it. If it means removing posts and blocking posters, that's what will happen.

You can sit around trying to think of the worse case scenario involving what I am saying or you can simply try to be helpful to future posters and avoid more threads going off-topic in this manner. I would prefer the second alternative, though I have plenty of experience with the first.

[Anonymous]

jsteele wrote:I am not going to respond to every post, but I will use the example of the Auditory Processing Disorder thread to help clarify my position. The OP of that thread very specifically requested a recommendation for an audiologist who could test or diagnose for APD. Posters jumped into tell her that there is no such thing as APD while others said that their children had such a diagnosis. Some posters suggested that a neuropsych exam should be done instead, while others argued this was a waste of money. Then posters who apparently recognized each other from previous threads engaged in what appear to be long-running arguments with each other. The OP was essentially forgotten. At some point I am pretty sure the entire thread turned to discussion of someone else's kid. This sort of thing has happened repeatedly and I will no longer tolerate it. If it means removing posts and blocking posters, that's what will happen.

You can sit around trying to think of the worse case scenario involving what I am saying or you can simply try to be helpful to future posters and avoid more threads going off-topic in this manner. I would prefer the second alternative, though I have plenty of experience with the first.

I don't disagree about the derail in that thread but please don't take discussion/disagreement about evaluations to be inappropriate. APD not being in the DSM and also generally seen as part of another syndrome is actually important information for OP to know. The reason it's hard to find people to test for APD is precisely because it is not in the DSM and it's a fringe diagnosis. There are a LOT of practitioners out there willing to take SN parents' money for little benefit, so I truly don't think you should delete any answers that don't directly provide what the poster thinks they are asking for.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Fact four: many don’t GAF if Auditory Processing Disorder is a diagnosis in the DSM-V.

Perhaps. But insurance companies and school systems care, as they won’t recognize and provide services for conditions that aren’t in the DSM-V.

I don’t personally think that noting this is hijacking a thread or unhelpful.

The reason the DSM is on version V is because it is continually being revised based on greater research and experience. If the OP is not asking about insurance coverage, it doesn’t matter what the diagnosis code ends up being.

It does matter if you want to be an informed consumer. If there's a practitioner who is going to diagnose your child with something not in the DSM, that departs from the current consensus, so you need to be asking why that is. Yes the DSM is a line-drawing exercise, but it's very important to be an informed consumer here.

[Anonymous]

DP, and maybe I am wrong, but I seriously doubt that Jeff would delete a post that said: Hey, just a heads up from my experience, you might have a hard time getting insurance coverage for a visit because APD isn't in the DSM-V.

That was not the tone of the posts in that thread, through.