Reply to Reminder about the purpose of the Kids with Special Needs Forum

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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]Jeff, a big part of the problem that you don’t and shouldn’t have to frankly understand in the underlying ongoing issues between the “MERLD” parents and their seeming foes, usually parents of children with autism, is that there are longstanding and popular Facebook groups dedicated to avoiding an autism diagnosis and that autism is overdoagnosed. Many of these parents have sought specific labels other than autism. They are very restrictive in the views that are allowed to be presented in the Facebook groups. No mention can be made of ABA or suggestions that something may in fact be autism. Those groups are dedicated to the idea that children grow out of these MERLD issues and that autism is far more serious and debilitating.

Perhaps that may give you some insight as to how this plays out here. The real problem many of the MERLD parents have is with the DSM. They wouldn’t even agree that many of the kids who have been diagnosed with autism by professionals have autism. They dispute the legitimacy of the diagnosis other than in rare cases. This is the crux of the real dispute playing out here but it only gets represented in agenda driven posts like, see an slp rather than get a full neuropsychology, etc. it’s subtle - not to us, but to an outside observer - but it’s the pushing of an agenda and it’s often hugely and horribly inappropriate and unhelpful for individual parents because it’s a red herring. I understand you can’t regulate this but I’m sick of every post being dominated hey these posters who are frankly on a crusade, so I’m not going to use this forum anymore. [/quote]

This isn't the problem at all.  [b]i'm not sure why you're focusing on the MERLD vs ASD issue[/b].  The problem is that some posters (now i'm thinking it is just one poster?) are obsessed with looking at every kid from the lens of ASD -- even when those kids have very clear diagnoses that aren't ASD *or* MERLD.  I am not an ASD denier nor a MERLD pusher (I don't even know what MERLD is).  I rarely see anyone on this forum denying ASD.  I *do* see posters suggest ASD and neuropsych evaluations all the time -- to the point where it is comical.

Please - [b]if you are the poster that is having to defend themselves to Jeff on this thread -- [/b]please know that YOU are the problem. No one else on this forum.  It is YOU.  We are asking YOU to dial it down. If you STILL feel the need to defend this position to Jeff and me and others on this thread, despite EVERYTHING we've told you in this thread, then that is a very clear sign: Please leave this forum. You are far, far, far more hurtful than you are helpful.  I'm not sure why you are fighting this so much and not getting it.  [/quote]

Because Jeff said that was the issue. Go back to the beginning. And no, I am not that poster. But if you have a child older than 6 with major life disrupting issues, the standard of care is a neurophsycological exam. That's not debatable. Parents suggesting that are in multitudes because it is simply what is recommended. Also, as I just said, my kid doesn't have autism. It certainly isn't always ASD. I don't think anyone has said that. I was, however, personally sucked into the rabbit hole of the MERLD facebook groups and wasted time on that line so I do have personal experience on how it can be harmful.[/quote]

I think the overall point here PPs, is that in a thread with a 6+ kid exhibiting major, undiagnosed  issues, saying "get a neuropsych" one time is ok; engaging in a debate about it after that is not. Even better,say exactly what you mean by a neuropsych (because that's not always clear from context). I'm guilty of being the one person in those threads who always pushes back on the "neuropsych" as a generic, but I vow to do better next time!  Similarly if someone posts an OP asking about MERLD in a way that's open for discussion, then it's valuable to post your experience with the facebook group, but then move on. I share your frustration with the "go to Tennessee" thing, but it's important not to derail.[/quote]

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