Gifted Issues Discussion homepage Forums Parenting and Advocacy need reference -- dangers of inappropriate treatme

We are continuing to receive pressure to treat in advance of a diagnosis.

Does anyone have any good references on hand to papers showing danger from inappropriate treatment? I would like to cite one or two in a letter detailing our wish to persue a referral, but only AFTER we complete DS's assessment.

Many thanks!
-Mich

What would the treatment entail? If it was some sort of language therapy, social skills training, OT exercises or providing an educational therapy...I would say sure couldn't hurt as long as it wasn't below his cognitive level and insulting. If it is drugs, no way.

My son was in a birth to age 3 program and an age 3 to 5 preschool program without a firm dx...just a "developmentally delayed" general label. At age 8 we got the ASD dx. Speech, OT, social skills, special preschool did not hurt him...and got him potty trained finally at age 4 and a half.

It is not drugs, however, suggestions so far have been somewhat terrifying (ie: like a low-stim group for a stimulus-seeking child)

We DO NOT WISH to pursue treatment before the diagnosis. I'm just looking for a good reference to include int eh email so that we appear informed (we feel that we ARE informed).

The best reference I have right now is specifically in regards to harm caused by extraneous SLP at early ages. I'd like something more general, but will use it if my current searching/this post don't turn up more in time.

Please note: I do actually have a strong reference for SLP causing harm when used inappropriately, so it's gonna be hard to convince me that it "sure couldn't hurt"

YMMV, and everyone's entitled to their opinions!

Depending upon who is doing the pressuring, can't you just use stalling and stonewalling techniques?

Thank you for your opinion.

We'll definitely be considering your thoughtful input.

We are pursuing those concerns with {expert diagnostician}

We will let you know what {expert} thinks as soon as s/he reaches a conclusion regarding {treatment/label/diagnosis}. We really appreciate your concern for our child.



Stuff like that?

Or is this a physician or something?

It's an incredibly paternalistic agency and they've declared they will close his file if we don't respond quickly. We want the referral, we just need more time to complete the asst.

ed to add: they will provide *any* services we might eventually need, and we only need another month.

It's honestly a bit more complex than that. They want to schedule a home visit. When we stalled before, they stalled the *assessment* until we agreed to the referral to the treatment agency going in simultaneously. We are also concerned about the agency's association with child services, so we want to be very clear about our reasons and intentions -- and especially about the fact that we are not crazy, we have real, documentable reasons. We do not want to appear neglectful or unwilling to treat, since that could raise red flags which could eliminate our ability to choose.

They have done several illegal things, but we are in an awkward position because of their powers and our probable eventual need for their funding. It's a dumb situation, and we are dealing with people who are used to a situation very different from ours.

I found a better ref, but if anyone has anything, please do let me know, I'd still like to find something yet better than this!

thanks!

Well I guess I don't know your child's problems and the therapy they want to provide. But my kid was completely silent and we had no diagnosis...so therapy couldn't hurt HIM...actually the speech therapy was pretty much useless when he wasn't talking.

I was thinking of programs that come to your house with an early intervention specialist and they bring books and toys and do an activity for a half hour or watch you interact for a half hour and then coach you.

What kind of harm? Now you've got me curious.

When mine wasn't talking, but would have whole conversations about space and trains and stuff using grunts and smiles they wanted us to reduce our speech to him to below the formally measured level of his comprehension. Basically they wanted us to withhold meaningful communication until he piped up. Exactly the kind of programme you describe. And there is some evidence that those programmes can cause longterm harm. I would guess by stressing the child by withholding meaningful conversation, and by eliminating opportunities to hear sentences.

The goal of therapy was to normalize his output without any regard for his special needs as a smart kid. His output was placed at 11 mos at the time. 6 months later, his output was placed at >4yrs (without intervention). If he'd heard no sentences from us would his first sentences have been, on average, 11 words long? I doubt it. But he heard us speaking to him at the level he understood, and so he kept learning, even while he was not producing speech.

But this is neither here nor there. I've sent my thing.