“You could miss-label (sic) a child,” said McMaster researcher Dr. Jan Willem Gorter. “We know that a child can be over diagnosed based on symptoms. For example, if a young child doesn’t respond to its name it could well be an early sign of autism.
“But it could also be something as simple as a hearing difficulty.”
Yes, he's right. Wouldn't you want to know either way? A screening is a screening. It's not tantamount to a diagnosis. Diagnosis comes, as many of us know, after hours and hours of forms and scales and evaluations by, in our case, developmental pediatricians, audiologists, speech-language pathologists, and occupational therapists. There's no way--NO WAY-- a screening in a pediatrician's office would do anything except potentially lead to a referral. Pediatrician's don't diagnose autism. And the referral would distinguish between autism and a hearing difficulty. This argument on his part is invalid.
The study author says that his review of the literature turns up no good screening tools for autism and no data indicating that the benefits of early screening outweigh the harm. I assume the harm is parental worry or unnecessary expenditures within the healthcare system. So...do we throw up our hands and say, "Oh, well. Never mind."?
The authors also argue that there are no effective treatments for autism. That argument carries an air of, "Why bother?" This entire paper baffles me. It's framed as as series of questions, including whether or not screening has been demonstrated as effective in a randomized trial. Given the urgency of early intervention--which has proved effective, despite the authors' argument--do we have time to wait for an RCT for a screening that, as the author quoted in the story himself says is "harmless"?
How do such children get referred now? It's not a clean system. It's hit-and-miss and largely driven by parental concern or pediatrician instinct or both. But screening in some way or another, as currently recommended by the American Academy of Pediatrics, lets the pediatrician, who only sees a child either in ear-infection crisis or during brief well checks, take the pulse, as it were, of the child's development in some sort of concerted, organized way. Whether screening is done with a validated screening tool or gut instinct, it needs to happen, and I find it rather questionable that a pediatrician would come out against it.
13 comments:
I'm shocked at this pediatrician's argument. For parents who may not be as aware of child development or the signs of autism, pediatricians may be the best chance for a child to receive early intervention.
and why on earth would anyone argue against the possibility of early intervention?? There is nothing that would HARM a child if done - speech therapy, ABA, extra attention - none of those would do anything but help a child, even if the dx was ultimately something else or nothing at all. Yet the cost of doing nothing if it truly was autism can be high. Sounds like one of those doctors that tells mothers they worry too much.
Reading through the report online, I found myself alternately muttering and swearing at the twisted reasoning put forth by the authors. My child is one of those for whome early screening would have been immensely helpful, but our (former) pediatrician was of the "let's wait and see" school of diagnostics. Here we are, years later, trying desperately to gain ground on some foundation skills which might have been taught so much earlier.
The authors border on hubris. I am disgusted and angered by this so-called study... and worried for so many children whose parents don't know what they don't know and won't until their child reaches school age.
We landed in the land of "luck" with ours.
Without the early speech delay the eldest probably to this day would not have a dx. Even so, the initial dx of mild PDD was overturned at 3 for "speech and language delayed with global delays" which the school system laughs at. It took 4 Dev Ped appts, and a new Dev Ped (which is nearly impossible to change Dr's in Ont - but I screamed - that too get's old after a while) and the last one was "a mild form of ASD" or as I was told verbally "NLD w/ a speech/language delay" at 6.5yrs. We've never removed it, even though now at nearly 12 it's mild NLD. The school system cannot dx autism, so they cannot force us to change it, nor are they pushing knowing that he'd lose those very accommodations - dealing with the claustrophobia at the top of the list and Ont PPM 140 which makes up his IEP. http://www.edu.gov.on.ca/extra/eng/ppm/140.html
The youngest had a speech delay but no autistic behaviour until 3. Ironically, he was the most "normal" of the 2 until age 3 and he's the severe one. Luckily we were in Tyke Talk already with the elder, jumped the queue at 18mths and at 3 he was dx'd.
As for the ABA (Lovaas style) hurts nobody. To this day my severe one and his Mother would say that's a lie. We are still dealing with it 5yrs later. I tried to go into the building where there offices were last spring and couldn't stop shaking and had to leave. I did manage to go for the ACS meeting and on all the paperwork for the ACS (augmentative communication service) paperwork it reads "do not communicate with the IBI program". My youngest is learning catagories at school and they are working to present it in an "non-ABA" fashion so that there isn't a behavioural fall-out since they spent unending hours sorting when they were here.
Just b/c you could follow the masses and do what therapies they tell you to do... doesn't mean you should.
This is an attitude that has offended me since my son was diagnosed. The idea that it is worse to have a lot of parents worried for nothing than it is to have parents OBLIVIOUS to serious red flags is offensive to the thousands of parents who have received a late diagnosis. I happened to figure out what was going on with my son, but mostly by fluke, but if I hadn't figured it out, the MCHAT would have caught it- 12 red flags, with 2 being enough to be referred to a developmental pediatrician. I am so happy with the progress my son has made with early intervention. How can someone say he's not worth it? That other children are not worth it? It's nonsense.
Aren't their illnesses that are challenging to diagnose and for which there isn't a screening that is extremely accurate? Do doctor's just throw up their hands and refuse to treat in those instances or do they use their best judgement to choose a treatment and look for signs the the illness is responding to the treatment? This seems like a bit of a double standard.
Wow, seems pretty simple to me. Niksmom said it right on, why have to gain ground later? Whether it is a hearing disorder, autism, or a neuro problem like epilepsy that could be caught before the age of 30 like mine was...what are they afraid of? Find out and work with it. A family must have a diagnosis to be prepared and educated; the sooner the better.
This is ridiculous. I think it all comes down to money...to test and to treat. And where did this guy get his info...what does he mean there are no successful treatments?
The strange "Not responding to one's name" example reveals his total ignorance. BESIDES hearing difficulty to the point of deafness, there is almost NO OTHER REASON a child will not respond to their name by 12 months other than ASD. That stands out as one of the most accurate of early signs.
There is a bunch of new evidence about the instability of an ASD diagnosis in very young children, but so what. The risks and costs of the screening and subsequent actions parents might take are NOTHING compared to the risks and costs of delaying useful early intervention. My son is preparing for mainstream preschool right now and while he is bright on his own and I cannot fairly say early intervention is the total cause of his progress, we would not be where we are now if it weren't for a dx at 18 months. When dealing with developmental DELAYS, how does it make ANY sense to PUT OFF treatment? My son is catching up to his peers... why wait till the gap gets further apart?
The authors’ own final recommendation (“At this time we recommend careful surveillance and assessment of all preschoolers who present with impairments in their development of language, social function, or cognitive skills that result in activity limitations”) fails to meet the very standards they use to attack routine screening (absence of randomized, controlled clinical trials proving outcome, etc).
In other words, routine screening lacks evidence, but they then suggest an alternative that is equally lacking in outcome data.
Of course a screening tool with poor sensitivity and poor specificity – in other words, that falsely labels kids with autism as normal, or that falsely labels kids with no developmental issues as autistic – may not get us closer to the goal of earlier recognition and intervention. To that extent, I don’t take issue with the authors.
The language skills of our youngest stalled at 12 months. We specifically made an appointment to express our concerns about this and were told, don’t worry, come back in 6 months. Not content with sitting and waiting, we had testing done and our daughter was diagnosed with moderately severe hearing impairment. This has since been corrected and her language skills, although still delayed, have resumed an upward developmental trajectory.
Our pediatrician flat-out dropped the ball on this issue. Ordering a hearing and/or developmental assessment should have happened reflexively, but unfortunately the field of pediatrics has yet to really consistently get its act together in this regard.
My experience is that it is better to wait, because diagnosis or even suspicion of diagnosis jeopardizes family-child relationship and because most types of early intervention proposed by "specialists" are not only wasteful but also plain harmful for the child. I have also the impression that even the good interventions have only marginal impact, compared with the natural developmental potential of the child.
I could not disagree more. In fact, information that consolidates a parent's possible bewilderment about their child's behavior into better understanding can benefit a family-child relationship. I'm interested in any data you have to support your other statements and your clarification of what the "natural development" of a child might be.
Glad you got this out there. At least in the States, kids only qualify for the Birth - 3 program based on areas of delay, not on labels, so the issue of mislabeling doesn't really apply, in my opinion.
I have seen so many organizations trying to get the word out to pediatricians to make sure they are doing routine screenings, and I think it would be a tragedy if ground were lost due to this paper.
Post a Comment