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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]Pretty much everyone has electronic records these days.

None of my kid's doctors treat him differently because he has ASD.

perhaps you should switch doctors. [/quote]

We have an HMO style insurance so its not as simple as switching doctors.  We no longer need any of the SN services so its a non-issue but the point is the diagnosis is in the electronic medical system and cannot be easily removed.  We'd have to change insurances, which we cannot do without a huge financial impact.  They do a superficial look at the medical records before our appointments (including ER visits) and see it.

Your electronic records are probably by each doctor, not an entire system, where every doctor, every specialist and even the ER can see everything (which is great in many ways and a problem in other ways).  [/quote]
Lot's of people have HMOs, and now states have databases that let 
every doctor in the state see your medical records, so your situation is not unique.  But if you talk to doctors the way you sound here, it's  no wonder both they and you are confused.[/quote]

What's confusing?  We got a ASD diagnosis with a quick appointment when child was a toddler.  Now it cannot be removed.  So, yes, its confusing and causes issues.  I think its interesting how ASD parents want to dismiss what others are going through but then get upset if they are dismissed.  That's like me saying, per my DCUM ASD diagnosis, given how my child is doing, your child should be doing the same, so why are you arguing with schools about IEP/504's as your child's diagnosis is exactly the same as my child's so there is absolutely no reason why you need accommodations (when reality is your child very much needs them).  ASD is a very broad term, which is what people are having an issue with as it doesn't do any of our kids much justice.  If someone sees my kid who is doing great in all aspects, then should someone hear high functioning and assume my HF kid is the same as yours when they are very different kids and have very different needs.  Just like getting rid of Aspergers was a poor choice as it had a specific set of criteria that explained those children well.  Same as getting rid of MERLD, which explains kids with receptive and expressive concerns well as its very hard to explain to someone about receptive langue as must don't get it. [/quote]

I totally get what you are saying. And you are right.

The DCUM mindset is that ASD is this small difference -- most people don't even know their kids have a Dx! Which is highly suspect.

In the trenches, ASD looks a lot difference when the police are being called because of your teen's behavior. THAT is the reality of ASD for many (most) people.  So no wonder that doctors approach your child differently. To them, ASD means severely impacted.[/quote]
Not at all.  The problem is that PP is saying her kid had a misdiagnosis at age 2 and currently doesn't act like ASD at all, but doctors all act like he's severely impacted and get him upset.  But my kid does have HFA and I've never seen a doctor treat her like she is severely impacted or even talk about the ASD diagnosis at all unless it was somehow relevant to the problem we're there for.

And it isn't like my kid never had a meltdown at a doctor or I haven't been called to school for bizarre or violent behavior, so your "in the trenches" comment is really out of place.  I am in the trenches now.  No the difference is not "small."  But I've also seen more severe cases than mine, and it definitely isn't what you and PP think it is.  You both make a lot of assumptions about ASD, and that's really the one thing you can't do.

So I don't understand why she can't find a doctor to just, you know, examine the patient without making unwarranted assumptions while every doctor I go to just acts like a normal doctor treating a child.  Whatever the reason, it surely isn't because these ALL these doctors, hers and mine, don't know what real, fake, mild, severe, misdiagnosed, or undiagnosed ASD looks like.  Because I am sure they've seen all of that if they've been around long enough.

The only thing I can think of is that they are telling her something she doesn't want to hear.  
[/quote]

Because we don't get doctor choice.  They are not telling me anything I don't want to hear.  They are asking why we have a diagnosis that doesn't fit and what happened and telling me they don't agree with the diagnosis but there is nothing I can do about it.  We've gotten multiple other evaluations from a variety of people and submitted them to that doctor and he refused them.  Our regular doctor makes no mention but we cannot always see the regular doctor.  Why are you so desperate to have all kids be ASD and like yours?    So, its ok you can make assumptions about someone's kid but they cannot make it about yours.

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