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.

I wonder how much speech therapy is designed by/for people who are really not very good at noting or deciphering their child's pre-verbal communication? My kids, #2 & #3 in particular, could communicate extremely effectively before they could talk (which was early and well). But I sometimes wonder how much that was them, and how much that was me. Because I regularly get weird looks when I tell people what their babies are trying to say, or translate grunts and gestures into requests. I CANNOT ignore a pre-verbal child attempting to communicate and get so stressed when other adults try to keep having adult conversation while a budding little person is trying to be understood... I can't fathom how it's a good idea to stop talking to a child?

That makes sense (the way you've described that it could be harmful to withhold speech). Got it.

With our DD (non-verbal until about 25 months) we were referred to a SLP who introduced the Hanen "it takes two" program, which opened the verbal floodgates for DD. I used to chatter away endlessly to her and she'd listen. She was an extremely adept non-verbal communicator - she just didn't talk. She knew we wanted her to, and the more we tried to entice her, the more defiant her glares would become, so we finally left it alone.

The SLP told me to talk less to her, but it was more so that I could shift my attention to what she was attending to (ie let it be child-led rather than parent-led). Rather than talking constantly to her, I was instructed to sit on the floor next to her and say nothing other than a one word label for whatever she was focusing on, like "book" or "block." It worked like M.A.G.I.C. for DD because her particular issue was perfectionism, and when I simplified language for her she became brave enough to try. She went from nothing to full sentences in about 2-3 weeks. Without the SLP's help I wouldn't have known to try that approach.

Michaela I think the key difference between our SLP's approach and the one you describe is that we were never instructed to NOT talk, just to clear away the verbal clutter and talk a lot less. I don't think I could ever be on board with no speaking at all - how would you model language for your child? How can they learn it if they don't hear it?

What about using this comparison: Anxiety can present very much like ADHD, but if you give a child with anxiety stimulant medication you can exacerbate the condition rather than helping it. Since the medication can be harmful in conditions that aren't actually ADHD, a proper diagnosis is required before treatment.

Not sure if that helps, but it's an example of how treatment should start afterdiagnosis...

Good luck - I hope you figure something out.

Why not just nod and smile, allow them to tell you what to do, and to interact with your child...


and then politely ignore it when they leave?

Passive aggressive, yes... on the other hand, it really sounds as though you've been backed into that corner. I'm sorry about that.

THIS is what we've been doing the last couple of months with DS3 (three as of yesterday ... aka freshly aged out of Early Intervention). He enjoyed his deep pressure OT treatment, he most of the time enjoyed his sessions with Developmental therapist who GOT THE POINT as soon as she met him and started bringing him non-age appropriate but fun for him things to do ... but Speech therapist and our son (and US) just couldn't get on the same page. She was freshly out of school and didn't seem to understand that this is not a "one size fits all" kind of thing. He would completely shut down for her. So we skipped a lot of sessions lately (and we WERE hit with the flu and other viruses pretty bad so weren't really making up stories) We had our last EI speech therapy on Monday. At that point he knew couple phrases and could say and read couple hundred words but wouldn't use much for communication other than the very basic (milk, jump, etc.) ... as of Thursday ... he's talking in full grammatically correct sentences. Still isn't much interested in talking but when he does, he IS now talking! ... this coming 2 months after being diagnosed with High Functioning Autism and I was told that we should teach him to communicate with pictures, after I told them he has a huge vocabulary that he just isn't using yet and can read almost all the words he knows (and their conclusion after a 30 minute session was that they cognitively and verbally assessed him at 6-12 months level).

He was just two weeks ago evaluated for the local public special ed and was offered the special ed preschool but we declined and very carefully agreed to speech, OT and social skills through the school. But I only really agreed because I already know the ST and OT he'll be working with (DS4.5 had them for a little while) and I know they will treat him well. And if he doesn't like it, I'll pull him out. He seems to improve much faster WITHOUT therapy then he does with therapy. He's a very happy little guy WITHOUT therapy ... and he's mad, sad, angry, shut down with therapy. So for us it's sort of a no-brainer right now.

DS4.5 was very similar. Not talking one day and suddenly talking in full sentences the next day (very close to his 3rd birthday). Could NOT stand speech therapy, but had fun with OT. We have friends whose kids are in ST and do very well but our kids just aren't wired the same way. I came to realize that more than anything, it's their perfectionism that caused the speech delays.

Our ds13 also had a similar path to speech - no babbles or words for years, then suddenly at around 3.5 he started talking in complex, deep thought, adult-sounding sentences. We'd never thought to take him for an EI eval or ST when he was little - he was our first child and it didn't really occur to us that most other children were babbling a lot more at a young age and then speaking a lot more. When he did start talking, the complexity of it just reaffirmed to us that he was on his own developmental path and all was a-ok, and we too thought his early lack of speech was due to him being an observer and a perfectionist. FWIW, we found out a few years later it *wasn't* perfectionism at all, it really was related to an expressive language disorder.

It is so tricky trying to piece through what's up with our kids when they are so young - like Michaela, I wouldn't want to invest time and $ into a therapy that I didn't know my child needed, especially if I had concerns that it didn't feel like it would help and might hurt. I do honestly believe that the best thing to do when our children are young is to listen to our intuitions as parents - they may not lead us to the absolutely 100% guaranteed best plan or solution, but jmo, for most children who ultimately do have some type of challenge, there is no straightforward roadmap to follow, and there will be stops and turns and redirects along the journey no matter what the challenge or where you start or which direction you choose to follow in the early years.

polarbear

polarbear ... I agree. As much as I think my boys are on their own paths, I am not taking any chances and while the 3-year old has been through the school eval and Autism eval, they all were too hung up on the Autism part and didn't explore other options so I have a private Speech eval scheduled for next Wednesday to get another opinion. It's in a place where our older one goes for OT and they know our younger one little better than other people and they are aware of his gifted nature. More than anything I am worried about possible motor issues (connected to his fine motor skills that are really lacking) but for the most part, in his case the "normal" approach to speech therapy is not a way to go.

HK: The problem really is that we WANT them to do their thing... 1 month later. We actually need these people, we just want the assessment on the table at their visit.

We can't just nod and smile, because we need them to get it RIGHT... which we think will happen IF they have access to the full assessment.

(for what it's worth, we are not sure if DS is normal, just smart, spectrumy, anxious, or maybe even has some other thing we've never heard of... we want the assessment because we think he will crash and burn in school next sept without some accomodations, and we need this agency to have accomodations from teh public schools (it's all public here) but we really *don't know* what's going on, and the assessor is highly recommended)

Hi all,
I agree with Mana, not all therapists are as "capable" as others are... I do not know if it is their education, or if they've just forgotten the "why" bit of why they chose their field...(if they in fact chose it for the right reason(s).

And to add my 2cents~
My DS first SLP was terrific, and she DID suggest that instead of doing stuff for him, ie getting him more water, that I should have him ASK for it, make him use his words, or at least attempt to. I did not have a problem with this at all, and it really did get him talking more
*This isn't the same as being told to "withhold all speech" of course, and I was actually Encouraged to keep talking to him, with him, around him etc, as I was always doing. His receptive language was/is awesome.

When he did start speaking again, he also spoke very well! Also, he started reading words aloud before speaking them as much!

Good luck with everything and please let us know what happens! You are your childs #1 advocate

arg.. we were told to withhold all complex speech... speech at the level we knew from the assessment he understood, and from life that he craved. We were asked to reduce our output to "bubble... bubble... BUBle!" despite the fact that he was able to follow multistep commands like "put the cow next to the hey, and then put the horse in the paddock behind the barn" and answer questions like "do you think the ball is in the cup, or do you think it might be in the cup," by nodding, grunting, pointing, and the occasional single word (he may have actually answered the question "is the ball in the cup" with "maybe" rather than picking from two options, I don't quite remember, I remember the conditional made an appearance in lights in the report. (this was at 19 months).

And the type of intervention where you focus on single words like this, despite being the state of the art, correct treatment, has been shown experimentally to be ineffective, in some cases detrimental, by at least one study. Really. I can dig up the reference if you guys would like.

His reaction to the assessment, where they used such restricted language with him was to produce the bloody word they wanted, and then spend a week recovering from the stress of it all.

It's just NOT TRUE that treatment is universally beneficial.

Ok, I missed the update, and I guess I should find that ref (I missed a message earlier in the thread, and only saw it now by luck! Anyway, I will find the ref for you CNN)

The harm caused was lower language scores at school age in treated versus untreated kids.

The update is: The letter worked, we received only gentle pushback, and on the first reply they allowed the delay, until we get the results, not even with a firm cut-date like in the contact letter. This is HUGELY more pleasant than when our referral for testing was delayed until we agreed to the treatment referral.

BIG sigh of relief.

And, honestly, I still suspect an expressive language disorder, possibly an apraxia. But that can't be diagnosed for a long time yet, and I don't want to rush stuff. All in good time.

Oh, and completely apart from the study on toddlers, I used to work with adults with acquired aphasia, and encountered many situations where we felt the person committed suicide or "lost the will to live" as it is said, due to the practice of 'making' them produce words and ignoring clear gestures or neglecting supported communication methods. I can't really think of a worse harm than that. Luckily the tide is changing on that front, and people are much more willing to "build communication ramps" rather than forcing people with aphasia to haul themselves up on their elbows...

Developmental conditions _are_ different, admittedly, but I think the lesson is valid.

That is great news and also very interesting re the treatment.

We saw a speechie with DD#3 when she was maybe 12 months old, I felt she seemed to have some sort of issue getting going with talking. She did, she was deaf from dirty great lumps of wax in her ears, now every time her diction devolves I go see the ENT who hoicks a rock out of her ear. Back then speechie laughed at me because her speech was technically so advanced for her age, but did none the less give the simplification advice. And we used that advice a little bit, when we felt like she was trying to mimic us and getting overwhelmed by the length and complexity of what we were saying (she repeats everything she hears verbatim almost to the point I have worried about echolalia). That judicious simplification when parental instinct said "She's trying to mimic and it's too hard, simplify". That was helpful, but there was no way we could have or would have gone for simplified speech ALL the time or with pushing really hard with single words.

DS1yr does sometimes need us to simplify our speech... but mostly we do that naturally because we react to the light in his eyes when he likes the way we're talking to him. And there are studies to show that parents tend to be very good judges of their children's receptive language needs, too.

I guess the thing is that one needs to meet the kid _where they are_ and sometimes the advice really is too one-size fits all... DSnow3 had a huge difference between his expressive/receptive language scores. I suspect the SLP he saw hadn't seen quite that before, and had no clue it mattered (though it seems to me it would be fairly clear to a thoughtful Speech Path). FWIW, the difference was substantially more than his age at the time

I think this is the right ref, but can't get the full text right this minute:
Whitehurst, G. J., & Fischel, J. E. (1994). Early developmental language delay: What, if anything, should a clinician do about it? Journal of Child Psychology and Psychiatry, 35, 613-648.


Ok, hope I didn't miss anything this time!

EDIT: DH thinks I got the wrong ref and it's Whitehurst 1994, a solo paper, no second author. Like I said, I can't get the full texts right now.

Mana: I don't know what we want until I know what he'd got

And the treatments we were offered when he was 19mos are standard, and considered "play based!" not at all extreme. In fact, the same advice was offered ("have some E, looks like candy") on a regular basis everytime we took him to a government sponsored center, even before he was a year old. In fact a few times I ended up having to whisper to him because they were so offended by my use of full sentences containing "advanced" grammar.

Don't forget, the "bubble" thing was when he was 19mos, and had 1 regular word. If his receptive language had MATCHED his expressive, that really would have been his level of comprehension.

Do any children develop their expressive and receptive language synchronously though? Genuine question?

Surely the receptive language of a perfectly normally developing child of 12-14 months would be far, far in advance of the expressive language of that same perfectly normally developing 12-24 month old? And surely that is to be encouraged through constantly exposing them to normal, fluent use of grammatically sound language?