Reply to Is ASD a useful label or is it we don’t know we will lump it under an umbrella term?

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Reply to "Is ASD a useful label or is it we don’t know we will lump it under an umbrella term?"

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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]

[b]I am saying they are calling everything ASD these days.[/b] You do know that many (most) ASD children have an intellectual disability, right. Not all ASD is high functioning.[/quote]
Umm, no. One in 59 of kids are diagnosed with ASD, but 1 in 6 have some kind of developmental disability, 
https://www.cdc.gov/ncbddd/autism/data.html

So 90% of kids diagnosed with a developmental disability don't have autism.  How is that "everything."[/quote]

1 in 6 kids total or 1 in 6 with ASD?[/quote]
1 in 6 of all children have a developmental disability.  1 in 59 of all children have ASD.[/quote]

Where are they getting these numbers from?  Actual parents and doctors or the schools who very loosely use educational diagnosis?[/quote]
The CDC has a complex methodology that reviews case files.  It's explained at one the links at the URL above.  And on developmental disabilities generally, you can see more here
https://www.cdc.gov/ncbddd/developmentaldisabilities/research.html

[/quote]

I didn't read it that carefully but it looked like these are targeted studies looking for specific data and outcomes and not inclusive of entire populations.  It wasn't clear in less I missed it where they got the case files from.[/quote]
I am not sure why targeted studies bother you, but here's autism data from a general parent survey.  It gives a higher prevalence of 1 in 40, but I think that may not be so accurate, since it asks parents if any doctor or health professional ever said your kid has autism.  There are cases where autism was suspected, but later ruled out, but parents still could say yes to the question.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5833544/

[/quote]

The studies are fine but reality is most studies are looking to confirm their topic/hypothesis and usually do so.  I'm on a new medication, as a good example and most of us were told its safe, few side effects and well studied and many of us (via online) are having serious side effects.  Studies don't always tell the entire story as for these drugs they didn't check using them with other medical conditions and other things.

Given the ASD diagnosis has broadened and become more inclusive, we are going to have a higher percentage.  Reality is kids who have severe issues, it doesn't really matter what you call it as they need services and their families need supports and if calling it ASD gets them the help they need, I fully support it.  [b]Where it gets hard is kids who are very minimally impacted or grow out of it, who are the kids most people see as they are not in the special education classes and can participate in regular activities, are also called ASD so its very deceiving to many and confusing to those not having a SN child as many don't understand the "spectrum" and the broad term really isn't useful to anyone.[/b]  When doctors see an ASD label, which we cannot get removed, they walk in with automatic assumptions about my child then in front of my child have a discussion about getting it removed (which I've tried but only the original doctor can and they are no longer there) and it really freaks out my child (talk to me privately about it).  There are a lot of unintended consequences for misdiagnosis and those are the ones most of us are talking about at both ends of the spectrum - the minimally impacted and the severely impacted. Most parents on here have kids in the middle where it is clear its ASD and its a non-issue and the question is how best can they help their child be the most successful person they can be.[/quote]
How do other people know what your kid's diagnosis is unless you tell them?[/quote]

Agree.  I have a kid who has ASD/ADHD-c, most people never think he has any diagnosis and are usually surprised when told.  Never encountered any doctors who assume anything about DS.[/quote]

The difference is we have electronic records and only the original doctor can do a rule out and the original doctor initially refused to continue to get services paid for and then retired so there is no way to change it.  With the electronic records, diagnosis and medications pop up at each appointment.  So, they see when they open the record to make a new record.  That is the impact of one 30 minute appointment/diagnosis when a child is a toddler.  All of us have very different insurances and each work differently so you may never have experienced it but we do every time we go to the doctor and that is what some of us are trying to sometimes explain.   Our insurance is very ASD friendly so the doctor was trying to help in his own way.[/quote]

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