Reminder about the purpose of the Kids with Special Needs Forum

[jsteele]

Anonymous wrote: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.

Yes, that is correct. I would leave such a post. I would also leave a response to such a post from a parent saying that their child had received an APD diagnosis. But, if someone then replied, "you are just trying to avoid an ASD diagnosis" I would delete it. It's not the provision of information that I am against, but the repetitive arguments that I constantly see that provide no value.

[Anonymous]

Anonymous wrote:

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.

NP. I think the point is that, depending on the thread, it’s actually NOT important that every poster meet your criteria for being “an informed consumer.” I think most posters welcome polite cautions, particularly when accompanied by helpful articles or other objective information, but nobody likes to be insulted or accused of purposefully withholding relevant diagnoses from their child because they have chosen a different path than you would choose.

[Anonymous]

Jeff, this is clearly a hopeless cause with some posters. Many of us really appreciate you having this board as like others have said we and our kids have greatly benefitted from the advice, provider recommendations and been there, done that. However, maybe it is time to consider shutting the SN board down as the negativity outweighs the benefits. Its pretty discouraging that you are trying to make this a better place for all of us who need it and can be of help to others and the same negative posters are arguing with you insisting they are right.

Thanks again for everything you do.

[Anonymous]

Jeff, I complete agree. Thank you for addressing this issue.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

NP. I think the point is that, depending on the thread, it’s actually NOT important that every poster meet your criteria for being “an informed consumer.” I think most posters welcome polite cautions, particularly when accompanied by helpful articles or other objective information, but nobody likes to be insulted or accused of purposefully withholding relevant diagnoses from their child because they have chosen a different path than you would choose.

And if you have a differing point of view and you’ve expressed it, no need to keep coming back and arguing with every poster. It just undermines what might have been a helpful post.

[Anonymous]

another poster who supports this move. I've been coming here for six years for my son and have gotten a lot of valuable information over the years.

But more frequently, I post a question and can predict the inevitable torrent of insults, angry questioning, etc etc that comes. For every 3 good answers, you get a horrid awful answer. And guess what? i feel horrible enough every minute of every day that I'm not able to do enough for my son. I spend most of my waking non-work hours worrying about, researching and following up with experts for my son. I easily spend $30k a year on therapies and doctors. I don't need anonymous strangers telling me how I'm doing everything wrong. I might spend a few months gathering information from here, and then the flood of negativity is so oppressive that I have to leave. I often stay away for months at a time, losing out on good advice. But i just can't take the hatefulness towards me. Because it starts to feel personal - even from anonymous strangers.

Finally, i have no idea what these defensive posters hope to achieve. Do you think, when a poster comes on and starts with 'My kid has X diagnosis" and you say 'that diagnosis doesn't exist so you're crackers' -- do you think you change that person's mind? worst case, if the person is totally nuts and has a bonkers diagnosis, do you think you'll convert them? What's the point of your never ending harping on these points?

[Anonymous]

Thanks for maintaining the forum, Jeff. My SN dc is 14 and I have been coming here since he was a toddler, and have received so much great information.

[Anonymous]

Thank you!

[Anonymous]

Anonymous wrote:another poster who supports this move. I've been coming here for six years for my son and have gotten a lot of valuable information over the years.

But more frequently, I post a question and can predict the inevitable torrent of insults, angry questioning, etc etc that comes. For every 3 good answers, you get a horrid awful answer. And guess what? i feel horrible enough every minute of every day that I'm not able to do enough for my son. I spend most of my waking non-work hours worrying about, researching and following up with experts for my son. I easily spend $30k a year on therapies and doctors. I don't need anonymous strangers telling me how I'm doing everything wrong. I might spend a few months gathering information from here, and then the flood of negativity is so oppressive that I have to leave. I often stay away for months at a time, losing out on good advice. But i just can't take the hatefulness towards me. Because it starts to feel personal - even from anonymous strangers.

Finally, i have no idea what these defensive posters hope to achieve. Do you think, when a poster comes on and starts with 'My kid has X diagnosis" and you say 'that diagnosis doesn't exist so you're crackers' -- do you think you change that person's mind? worst case, if the person is totally nuts and has a bonkers diagnosis, do you think you'll convert them? What's the point of your never ending harping on these points?

+ 1

[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.

Yes sure.. if you want your child restricted to what “insurance will pay 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.

Yes sure.. if you want your child restricted to what “insurance will pay for”.

I pay well over $50 k out-of-pocket for therapies for my two ASD kids. But I do want to know that the interventions I pursue are grounded in science and medical research and not a waste of limited time or money. So I consult regularly with a developmental pediatrician and get my kids periodic neurological exams.

With regard to APD, my youngest absolutely meets every criteria for it that one reads on-line, so I queried the developmental pediatrician about it several years ago, insisting that it described my youngest child, and asking whether I should pursue a formal APD diagnosis.

I was told that it wasn’t a recognized diagnosis, wouldn’t change what I already knew and that treatments were a waste of time and money because they didn’t address the underlying conditions.

So we stick with OT, PT, speech, reading tutors, social skills camps, and incredibly strong IEPs and school placements (thanks to the excellent neuropsych exams we’ve gotten plus an amazing developmental pediatrician who will come to IEP mtgs and engage the school when needed).

[Anonymous]

^^ neuropsych exam

[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.

As someone with a child diagnosed with apd and language based LDs, the thread got hijacked by an undisclosed merld mom. Apd is only diagnosed by audiologists. It’s not in the dsm. It’s used as a descriptor by kids on the spectrum and with kids with learning based LDs.

Then you get a poster claiming not sticking to topic by bringing up either LDs or ASD or adhd, but that is reality. These are linked to apd symptoms.
https://www.nidcd.nih.gov/health/auditory-processing-disorder
https://www.ncbi.nlm.nih.gov/pubmed/1866407e1
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6158468/

Jeff, you don’t understand merld or special needs. You don’t know how to be objective. I will happily provide you with the mountains of testing my kid has gone through, plugs medical, plus academic.

If someone insists their kid isn’t on the spectrum, doesn’t have language based LDs or adhd, but they have ‘“language issues” they belong on the merld Facebook group and not here, because we in the dissent respect the science and evidence based interventions. We also vaccinate and understand that the brain and it’s lovely neural networks are complicated and related and there’s no shame in autism.

Language based LDs and autism and adhd have more similarities than differences. Some of us are trying to breakthrough the bs that some people try to pull on here.

[Anonymous]

Thanks for posting the above links!

[jsteele]

Anonymous wrote:
As someone with a child diagnosed with apd and language based LDs, the thread got hijacked by an undisclosed merld mom. Apd is only diagnosed by audiologists. It’s not in the dsm. It’s used as a descriptor by kids on the spectrum and with kids with learning based LDs.

Then you get a poster claiming not sticking to topic by bringing up either LDs or ASD or adhd, but that is reality. These are linked to apd symptoms.
https://www.nidcd.nih.gov/health/auditory-processing-disorder
https://www.ncbi.nlm.nih.gov/pubmed/1866407e1
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6158468/

Jeff, you don’t understand merld or special needs. You don’t know how to be objective. I will happily provide you with the mountains of testing my kid has gone through, plugs medical, plus academic.

If someone insists their kid isn’t on the spectrum, doesn’t have language based LDs or adhd, but they have ‘“language issues” they belong on the merld Facebook group and not here, because we in the dissent respect the science and evidence based interventions. We also vaccinate and understand that the brain and it’s lovely neural networks are complicated and related and there’s no shame in autism.

Language based LDs and autism and adhd have more similarities than differences. Some of us are trying to breakthrough the bs that some people try to pull on here.

I am not sure what you are trying to say because several of your points seem to be completely consistent with what I have been saying. But, since you think I am such a doofus and you are such an expert, I suggest that you start your own forum which will clearly be much better than this one. Whether you do that or not, if you continue to display the attitude that posters whose children have been diagnosed with specific issues don't belong here, you will probably find yourself removed before long. The "MERLD" vs "ASD" debate is the single most frustrating thing I have encountered in this forum and I am ready to be done with those on both sides of the debate since neither group seems capable of controlling themselves.