"Baby's gaze May Signal Autism, a Study Finds" - Page 2 - Mothering Forums

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Old 03-05-2014, 06:51 AM
 
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Originally Posted by Mirzam View Post
 

 

Yeah right, must be a bad photo. Never mind that the family witnessed their baby boy slowing change from a normally developing toddler to one that was far from normal. 

Parents lie or are grossly incompetent…snort


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Old 03-05-2014, 08:06 AM - Thread Starter
 
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There is a study or two where the following has happened:

parents claim their child regressed into autism at a certain age

researchers looked at early videos of the child and said, no, subtle signs were already there. 

 

My google-fu skills are failing me, so I do not have the study to post.  

 

 

I think you are talking about this study http://www.ncbi.nlm.nih.gov/pubmed/8050980

 

Basically, a developmental pediatrician was asked to look at 22 videos of children at their one year birthday party.  10 boys and 1 girl in both groups.  Eleven were diagnosed with autism, 11 were developmentally normal.  She was able to correctly identify 10 out of the 11 autistic children.  

 

I always thought this quote from Ari Brown (a fairly well known pediatrician) was interesting.  Mainly because it was virtually identical to what my own pediatrician said to me when I was asking questions about autism. 

 

"I follow the developmental milestones of all my patients carefully. I have concerns for autism and mental retardation long before a patient turns a year of age.  But I keep these concerns to myself because many of these worrisome children ultimately catch up developmentally.  I have never had a developmentally normal patient come in for his one year well check, get his MMR vaccine, and come back at his 15-month checkup as an autistic child. The 15 month old who is autistic is a child I was worried about long before the one-year well check." 

 

I thought it was interesting and reassuring for most parents.  There are very rare cases where children have late onset autism, but most pediatricians have probably never seen it.  Anecdotally, I specifically asked my pediatrician about it and she said she has never had a patient (nor have any of her colleagues) that was diagnosed with late-onset autism.  


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Old 03-05-2014, 08:07 AM
 
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My first reaction was the first photo looked like a bright young child, and the second photo looked like an infant.

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Old 03-05-2014, 08:15 AM
 
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Originally Posted by teacozy View Post

 

I think you are talking about this study http://www.ncbi.nlm.nih.gov/pubmed/8050980

 

Basically, a developmental pediatrician was asked to look at 22 videos of children at their one year birthday party.  10 boys and 1 girl in both groups.  Eleven were diagnosed with autism, 11 were developmentally normal.  She was able to correctly identify 10 out of the 11 autistic children.  

 

I always thought this quote from Ari Brown (a fairly well known pediatrician) was interesting.  Mainly because it was virtually identical to what my own pediatrician said to me when I was asking questions about autism. 

 

"I follow the developmental milestones of all my patients carefully. I have concerns for autism and mental retardation long before a patient turns a year of age.  But I keep these concerns to myself because many of these worrisome children ultimately catch up developmentally.  I have never had a developmentally normal patient come in for his one year well check, get his MMR vaccine, and come back at his 15-month checkup as an autistic child. The 15 month old who is autistic is a child I was worried about long before the one-year well check." 

 

I thought it was interesting and reassuring for most parents.  There are very rare cases where children have late onset autism, but most pediatricians have probably never seen it.  Anecdotally, I specifically asked my pediatrician about it and she said she has never had a patient (nor have any of her colleagues) that was diagnosed with late-onset autism.  

 

This in no way exonerates vaccines or specifically the MMR. You pediatrician demands full vaccine compliance from her patients, correct?

 

I wonder if your pediatrician and her colleagues would recognize a vaccine injury, and I wonder how many VAERS reports she has submitted.  


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Old 03-05-2014, 08:21 AM
 
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I don't know exactly what people are trying to point out when they use the before and after videos to show vaccine injury, which is why I asked. 

 

 

 

 

The autistic kids from the families I know most closely are in their teens now.  With the ones who have before-and-after video footage, you can see a child who is clearly engaged, with good eye contact, appropriate developmentally, with clear and appropriate speech. They have all have video footage from the day before the vaccine visit. This isn't unusual; many parents of babies and toddlers take some video footage every week or even every day.

They all have disturbingly similar footage from the day after the vaccine visit.  One could brush it off as just a sick child; in each case, the child has a puffy, red face, the eyes aren't all the way open, and have a dulled expression, and you could make a case that any sick child is going to be less responsive.

But what these videos offer is a timeline: the child was healthy the day before vaccines, and unhealthy the day after, AND THE SYMPTOMS OF ILLNESS NEVER WENT AWAY.  

What many parents of autistic children are saying is that the vaccines caused a reaction that made their child sick, and that their illness affected brain function.

 

I think that's an over-simplification.  I think there is more than just the vaccine at play here.  There is likely a genetic predisposition that is linked with celiac disease, there is the possibility of other environmental factors, and there is always the possibility that the children affected were already in the very early stages of fighting off some virus (remember, symptoms often don't show until a day or two--or more--AFTER infection).  Vaccines are the straw that breaks that camel's back for these children.

 

But the "science" is not set up to identify causal cofactors.  More problematically, these days, it is purposely set up to look AWAY from vaccines as a causal factor, and there is no effort whatsoever to screen for risk factors.  

 

Combine that with the fact that some vaccines (like flu shot and hepatitis B) are very aggressively marketed and/or mandated without regard to necessity, efficacy, and safety.

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Old 03-05-2014, 09:26 AM
 
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Originally Posted by teacozy View Post
 

 

I think you are talking about this study http://www.ncbi.nlm.nih.gov/pubmed/8050980

 

Basically, a developmental pediatrician was asked to look at 22 videos of children at their one year birthday party.  10 boys and 1 girl in both groups.  Eleven were diagnosed with autism, 11 were developmentally normal.  She was able to correctly identify 10 out of the 11 autistic children.  

 

 

I thought it was interesting and reassuring for most parents.  There are very rare cases where children have late onset autism, but most pediatricians have probably never seen it.  Anecdotally, I specifically asked my pediatrician about it and she said she has never had a patient (nor have any of her colleagues) that was diagnosed with late-onset autism.  

Thanks for the link.

 

Concerning the bolded, about 1/3 of autism cases are described as regressive.  I would be quite shocked if pediatricians had never seen it.

 

https://sfari.org/news-and-opinion/news/2012/regression-may-mark-one-third-of-autism-cases

 

"About one in three children with autism abruptly lose language, social or other developmental skills in their second year of life, according to a meta-analysis published 2 August in the Journal of Autism and Developmental Disorders1.

In contrast to most children with autism, who either develop normally and then plateau or display signs of the disorder from birth, this subset of children appears to develop normally early on and then suddenly regress.

The results come from the synthesis of 85 studies published between 1980 and 2010 that examined regression, and include nearly 30,000 participants diagnosed with an autism spectrum disorder."

It is possible your pediatrician is equating late onset autism to childhood disintegrative disorder - which is rare.  Just for kicks, I would ask the pediatrician if he has ever known a child who appeared to be developing normally, but then regressed into autism between 15 and 30 months. It might be a terminology issue around "late onset" and "regressive." Alternately,  your pediatrician might belong to the autism is purely genetics camp.  Those who belong to this camp tend to dismiss regressive autism, as it does not fit with the paradigm of "they were just born different."  Pediatricians are humans too, and to a degree we see what we want to see (which is why synthesized studies are so important) 

 


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Old 03-05-2014, 09:59 AM
 
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More points to ponder:  If a child is apparently developing normally, but
1) retrospective analysis of photos/videos does show possible subtle indications of developmental concerns

and

2) these same children had obvious major deterioration/medical events immediately following vaccination

 

that is surely cause to suspect that vaccination accelerated, triggered, or contributed to their autism.

What if those children would have only had subtle indications of autistic spectrum disorder, as opposed to full-blown autism, had they not received the 12-15-month set of vaccines at that particular time?  Ask ANY parent of a severely autistic child, and they will say that they would take mild Asperger's over profound autism any day, even if their child's risk of catching vaccine-available diseases was increased.  In fact, most (if not all) such parents have already gone on record saying that they would have preferred the risks of measles to the risk of autism.  


What if the subtle indications of autistic spectrum disorder, seen retrospectively in photos and videos, were actually caused by the earlier vaccines the child had received?  We don't know, because the studies used were not set up to catch this kind of relationship--except for the later-altered Vaerstraten study,which DID show a 7-fold increase for neurodevelopment disorders linked with vaccines given in the first month of life.  It is entirely plausible that the later vaccines might have an exponentially disastrous effect on those kids who were already showing subtle indications.

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Old 03-05-2014, 10:09 AM - Thread Starter
 
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Thanks for the link.

 

Concerning the bolded, about 1/3 of autism cases are described as regressive.  I would be quite shocked if pediatricians had never seen it.

 

https://sfari.org/news-and-opinion/news/2012/regression-may-mark-one-third-of-autism-cases

 

"About one in three children with autism abruptly lose language, social or other developmental skills in their second year of life, according to a meta-analysis published 2 August in the Journal of Autism and Developmental Disorders1.

In contrast to most children with autism, who either develop normally and then plateau or display signs of the disorder from birth, this subset of children appears to develop normally early on and then suddenly regress.

The results come from the synthesis of 85 studies published between 1980 and 2010 that examined regression, and include nearly 30,000 participants diagnosed with an autism spectrum disorder."

It is possible your pediatrician is equating late onset autism to childhood disintegrative disorder - which is rare.  Just for kicks, I would ask the pediatrician if he has ever known a child who appeared to be developing normally, but then regressed into autism between 15 and 30 months. It might be a terminology issue around "late onset" and "regressive." Alternately,  your pediatrician might belong to the autism is purely genetics camp.  Those who belong to this camp tend to dismiss regressive autism, as it does not fit with the paradigm of "they were just born different."  Pediatricians are humans too, and to a degree we see what we want to see (which is why synthesized studies are so important) 

 

 

Interestingly, I've actually read that study before.  

 

One of the biggest problems with it, which even your link addresses, is that they relied on parental reports.   A study sourced in your link demonstrated that most parents don't pick up on their child's regression.  

 

From your link 

 

"One of the major challenges in studying regression is that researchers often rely on parents’ memories to establish whether a child experienced a loss of skills years earlier. Many developmental changes are subtle and gradual, making it difficult for professionals, let alone parents, to notice and pinpoint them in time.  

A more recent approach to studying regression is prospective, which involves following children who are at high risk for autism to see whether and when they lose skills. Those studies are time-consuming and expensive, however, and only 2 of the 85 studies in the meta-analysis used this approach.

One of the two studies, led by Ozonoff and published in 2010, provides strong evidence that parents underestimate regression. Compared with the 17 percent regression rate as reported by parents, Ozonoff’s team found that 86 percent of the children showed a decline in social skills.

What’s more, the study found that children begin to lose their social skills as early as 6 months of age — more than a year before the average age reported in the meta-analysis.

“Parent report is probably catching the tip of the iceberg,” says Ozonoff. “When we use other research techniques, we realize that a lot more children have regression.”

This link also goes into the study a bit more (http://sfari.org/news-and-opinion/workshop-reports/2012/workshop-report-regression-in-autism)  and says "According to Ozonoff, 19 of 22 young children who went on to develop autism showed a decline in gaze directed toward faces between 6 and 36 months of age. However, only three parents reported any regression in their child’s behavior, suggesting that parents are not necessarily sensitive to regression in their children." 

If you click on the blue link in the link your provided it says "

At 6 months of age, babies who will later develop autism begin to lose some of their social skills and continue to regress until age 3, according to a study published in March in the Journal of the American Academy of Child & Adolescent Psychiatry1.

Unexpectedly, most parents do not notice this decline, suggesting that it happens gradually and without easily detectable dramatic changes.

"The results really, really surprised us," says lead investigator Sally Ozonoff, professor of psychiatry at the University of California, Davis M.I.N.D. Institute.

The study highlights the need for better screening methods to identify children at risk for the disorder as early as possible, the researchers note." 

 

https://sfari.org/news-and-opinion/news/2010/autism-symptoms-emerge-in-infancy-sibling-study-finds

 

Interesting stuff. 

As far as my pediatrician goes,  I don't know for sure whether she was talking about childhood disintegrative disorder or late-onset autism but she essentially stated the same thing that the other pediatrician I quoted said.   As a first time mom of course it's something I worred about (especially having a boy) and she helped reassure me that she saw absolutely zero symptoms or warning signs in my son. She said that she often notices things but doesn't necessarily worry parents by mentioning them because children all develop differently and many of them turn out completely normal.  She said she has never been surprised by an autism diagnoses in all her years of being a pediatrician, and had noticed warning signs well before the diagnosis.  I think her exact words were along the lines of "I've never had a completely normal child that I had no concerns about leave my office at their 12 month well visit and come back with an autism diagnosis at the next one. Thats never happened to me or any of my colleagues." 

 


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Old 03-05-2014, 11:37 AM
 
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More points to ponder:  If a child is apparently developing normally, but
1) retrospective analysis of photos/videos does show possible subtle indications of developmental concerns

and

2) these same children had obvious major deterioration/medical events immediately following vaccination

 

that is surely cause to suspect that vaccination accelerated, triggered, or contributed to their autism.

What if those children would have only had subtle indications of autistic spectrum disorder, as opposed to full-blown autism, had they not received the 12-15-month set of vaccines at that particular time?  Ask ANY parent of a severely autistic child, and they will say that they would take mild Asperger's over profound autism any day, even if their child's risk of catching vaccine-available diseases was increased.  In fact, most (if not all) such parents have already gone on record saying that they would have preferred the risks of measles to the risk of autism.  


What if the subtle indications of autistic spectrum disorder, seen retrospectively in photos and videos, were actually caused by the earlier vaccines the child had received?  We don't know, because the studies used were not set up to catch this kind of relationship--except for the later-altered Vaerstraten study,which DID show a 7-fold increase for neurodevelopment disorders linked with vaccines given in the first month of life.  It is entirely plausible that the later vaccines might have an exponentially disastrous effect on those kids who were already showing subtle indications.

 

These are some of the things that I have always wondered. In the study that started this thread, I saw some other media reports saying that the study of a child's gaze could only be done to detect signs of autism using sophisticated equipment-- that it was not something parents or pediatricians could easily detect on their own in the first few months of life. They went on to label some children "high risk" because of relatives who have autism. I suppose this means that only those children who are considered high risk from the beginning might actually be screened with this equipment that follows the baby's gaze. http://thechart.blogs.cnn.com/2013/11/06/study-signs-of-autism-may-show-up-as-early-as-first-month/

 

For those kids, maybe at some point it would be possible to look specifically at kids who are labelled high risk and then screened for a decline in eye gazing according to the techniques used in the study. Then perhaps over the course of a few years, someone could actually look at those who were vaccinated and unvaccinated to try to answer some of your suspicions about whether kids who are predisposed to autism are more vulnerable to vaccines. That's one way I think this study can be useful-- and it can be used to test a number of post-birth exposures that might contribute to developing more severe autism. Unfortunately it looks like this kind of capability is still a long way off.

 

Quote:
Originally Posted by kathymuggle
 
In any event, either photos and videos are helpful evidence or they are not.  We cannot say they are useful when they support our POV and useless when they don't.  

 

I agree. I think the case study of the pediatrician who looked at first birthday videos is an interesting case study that suggests that perhaps there is a way to see autism on video before an actual diagnosis is made. It's interesting to me and that's about it. Whether or not its useful in the future of autism science, I don't know. 

 

I also think that the cases that Taximom mentions sound like they could be convincing. I can't see them so I don't know how they compare to the videos the pediatrician watched. In both situations, these are just case studies, which makes them little more than anecdotal. One physician watching 22 videos and reporting  with correct answers isn't, to me, "helpful evidence" that videos are good for diagnosing problems either before or after vaccines. The most that study offers is a starting point for possibly developing indicator of autism that could consistently be seen on video.

 

So I'm not saying one type of video is useless and another is useful. I'm saying that it's pretty clear that videos alone aren't used to diagnose children with autism, and certainly don't establish causes. They may or may not be good evidence from case to case, depending on how clearly a before and after video demonstrates the actual loss of a skill. I haven't seen videos uploaded by parents on the web demonstrate this clearly, so I have no judgement about whether or not the parent's story is correct. I just don't know.

 

Obviously, there are situations where photos and videos can show very obvious changes so I am not saying all photos and videos are useless all the time. In fact, that's exactly why I wanted to see examples. 

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Old 03-05-2014, 02:30 PM
 
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Interestingly, I've actually read that study before.  

 

One of the biggest problems with it, which even your link addresses, is that they relied on parental reports.   A study sourced in your link demonstrated that most parents don't pick up on their child's regression.  

 

From your link 

 

"One of the major challenges in studying regression is that researchers often rely on parents’ memories to establish whether a child experienced a loss of skills years earlier. Many developmental changes are subtle and gradual, making it difficult for professionals, let alone parents, to notice and pinpoint them in time.  

A more recent approach to studying regression is prospective, which involves following children who are at high risk for autism to see whether and when they lose skills. Those studies are time-consuming and expensive, however, and only 2 of the 85 studies in the meta-analysis used this approach.

One of the two studies, led by Ozonoff and published in 2010, provides strong evidence that parents underestimate regression. Compared with the 17 percent regression rate as reported by parents, Ozonoff’s team found that 86 percent of the children showed a decline in social skills.

What’s more, the study found that children begin to lose their social skills as early as 6 months of age — more than a year before the average age reported in the meta-analysis.

“Parent report is probably catching the tip of the iceberg,” says Ozonoff. “When we use other research techniques, we realize that a lot more children have regression.”

This link also goes into the study a bit more (http://sfari.org/news-and-opinion/workshop-reports/2012/workshop-report-regression-in-autism)  and says "According to Ozonoff, 19 of 22 young children who went on to develop autism showed a decline in gaze directed toward faces between 6 and 36 months of age. However, only three parents reported any regression in their child’s behavior, suggesting that parents are not necessarily sensitive to regression in their children." 

If you click on the blue link in the link your provided it says "

At 6 months of age, babies who will later develop autism begin to lose some of their social skills and continue to regress until age 3, according to a study published in March in the Journal of the American Academy of Child & Adolescent Psychiatry1.

Unexpectedly, most parents do not notice this decline, suggesting that it happens gradually and without easily detectable dramatic changes.

"The results really, really surprised us," says lead investigator Sally Ozonoff, professor of psychiatry at the University of California, Davis M.I.N.D. Institute.

The study highlights the need for better screening methods to identify children at risk for the disorder as early as possible, the researchers note." 

 

https://sfari.org/news-and-opinion/news/2010/autism-symptoms-emerge-in-infancy-sibling-study-finds

 

Interesting stuff. 

As far as my pediatrician goes,  I don't know for sure whether she was talking about childhood disintegrative disorder or late-onset autism but she essentially stated the same thing that the other pediatrician I quoted said.   As a first time mom of course it's something I worred about (especially having a boy) and she helped reassure me that she saw absolutely zero symptoms or warning signs in my son. She said that she often notices things but doesn't necessarily worry parents by mentioning them because children all develop differently and many of them turn out completely normal.  She said she has never been surprised by an autism diagnoses in all her years of being a pediatrician, and had noticed warning signs well before the diagnosis.  I think her exact words were along the lines of "I've never had a completely normal child that I had no concerns about leave my office at their 12 month well visit and come back with an autism diagnosis at the next one. Thats never happened to me or any of my colleagues." physician who is experienced given the prevalence of autism, is really who should be dealing with children, frankly there are many of them, far too many in fact! Older knowledgable ones know what they are seeing. 

ETA- I simply have NO idea why a first time parent given the prevalence of autism not go to a physician that has experience dealing with regressive autism. I would want the most experience I could find and trust to evaluate my child, regardless of what type of developmental type my child is. Experienced ones KNOW when and DO send their patients to specialists and at much sooner rates. Speak with a local special ed teacher, know how many regressive autistic children they have, you would see this is very prevalent. My ped even said, parents are coming in asking how much experience based on the prevalence when they interview. We are not just talking a few with it either!

 https://sfari.org/news-and-opinion/news/2012/regression-may-mark-one-third-of-autism-cases

I would never think to have my child (or even a pet for that matter) treated by ANY physician that keeps ANY information from parent/patient. I find it inexcusable for a physician to without information regardless of the outcome - that is simply deplorable!

 

The mere fact that a physician even alludes to doing so would make me RUN from that office, that frankly is a conversation that never should have occurred. IF they choose to do so regarding developmental issues, they can be doing it for other issues.

 

Respectable physician do not conduct themselves like that. 


 

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Old 03-05-2014, 05:29 PM - Thread Starter
 
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I would never think to have my child (or even a pet for that matter) treated by ANY physician that keeps ANY information from parent/patient. I find it inexcusable for a physician to without information regardless of the outcome - that is simply deplorable!

 

The mere fact that a physician even alludes to doing so would make me RUN from that office, that frankly is a conversation that never should have occurred. IF they choose to do so regarding developmental issues, they can be doing it for other issues.

 

Respectable physician do not conduct themselves like that. 

 

I don't think what she does is unusual at all.  It would be extraordinarily rare to diagnose a 12 month old with autism, even if she did voice her concern.  The cutoff is usually 18 months due in large part to the fact that children are so variable.  Many symptoms that were a little worrying at 12 months end up going away.  The only thing mentioning it would do is cause unnecessary worrying for the parents.  Most of the time it's nothing and the child is completely normal. 

 

I remember this very topic being addressed on SBM.  They made the point that you don't tell every patient that comes in with a headache that they could have brain cancer.  It would serve no purpose.  Is it true that they could maybe have it? of course.  Headache is a vague symptom that could mean any number of things.  They just order a scan to rule it out instead of worrying a patient over a very unlikely diagnosis. 


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Old 03-05-2014, 05:57 PM
 
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I don't think what she does is unusual at all. Sorry but you are sooooooooooo WRONG about this!!!!!!!!!!!!  It would be extraordinarily rare to diagnose a 12 month old with autism, even if she did voice her concern.  The cutoff is usually 18 months due in large part to the fact that children are so variable.  Many symptoms that were a little worrying at 12 months end up going away.  The only thing mentioning it would do is cause unnecessary worrying for the parents.  Most of the time it's nothing and the child is completely normal. 

 

I remember this very topic being addressed on SBM.  They made the point that you don't tell every patient that comes in with a headache that they could have brain cancer.  It would serve no purpose.  Is it true that they could maybe have it? of course.  Headache is a vague symptom that could mean any number of things.  They just order a scan to rule it out instead of worrying a patient over a very unlikely diagnosis. 

NO WAY! It is not a good relationship between a parent/patient and a physician.

 

and it is not a conversation ANY respectable physician has with parents/patients, they do not even allude to doing it! NO 

 

It is one thing to feel that way (that things might change) and clearly the medical community doesn't feel this is even right, but it is another thing to tell you as a parent/patient that the physician does this!!! That is ethically wrong!  

 

A good test of this is if the doctor would like it done to themselves by another doctor, those in the medical field I know would never respect someone who would do this.

 

 

there is plenty out there that says the same thing - it is not view as a positive!

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2673833/

 

This position paper will show that withholding information from a competent patient is a violation of the doctor's role as a fiduciary and is not ever justified.

 

Even though there is legal recognition of therapeutic privilege, it is not applicable on ethical grounds. In addition to disrespecting autonomy, withholding information from competent patients does not benefit them in the long run and can actually cause more harm than good. Consequently, a doctor who withholds information from a competent patient unless in the exceptional case of patient waiver violates the ethical principles of autonomy, beneficence and nonmaleficence.

 

The ethical principle of autonomy which protects patient self determination goes hand in hand with truth telling. Lying to and deceiving patients breach the autonomy of individuals and interferes with the doctrine of informed consent.


 

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I remember this very topic being addressed on SBM.  They made the point that you don't tell every patient that comes in with a headache that they could have brain cancer.  It would serve no purpose.  Is it true that they could maybe have it? of course.  Headache is a vague symptom that could mean any number of things.  They just order a scan to rule it out instead of worrying a patient over a very unlikely diagnosis. 

 

you are very, very wrong if you compare ordering  a scan to not telling a parent that they see ANY signs that a developmental issue "may or may not be occurring" - you are stating your physician is not ordering nor telling the parent, that is not a physician you should be seeing with a child, NO ONE should be!!!!!!! 

 

                                              a physician that TELLS you they don't tell the parents is someone you should RUN FROM! 

 

 

from the link I posted in the previous post - You really should understand the difference here, unless your DR feels you or the parents she spoke of are not able to handle it (it really has to justified!), still that is not a doctor who should see a child or even be treating humans.

 

You sign / are aware of informed consent when you child gets vaccinated yet this physician doesn't feel parents can handle that something might be going on developmentally????!!! - that Dr should not practicing!!!!!!!!! :angry 

Therapeutic privilege

“The therapeutic privilege permits physicians to tailor (and even withhold) information when, but only when, its disclosure would so upset a patient that he or she could not rationally engage in a conversation about therapeutic options and consequences”.10 The moral basis of invoking the therapeutic privilege is for doctors to do what is beneficial for the patients and to avoid inflicting harm on them. If disclosure of certain information is deemed harmful to patients, the doctor may be justified in withholding such information. This enables doctors to uphold rather than violate the ethical principles of beneficence and nonmaleficence.

This argument is, however, not acceptable. There is evidence to support the notion that informing patients truthfully about life threatening diseases does not result in a greater incidence of anxiety, despair, sadness, depression, insomnia or fear.11 On the contrary, informed patients have better communication with relatives and staff and greater trust in the care provided. Because truth telling is at the core of fiduciary relationships, withholding information from patients erodes trust and isolates patients.


 

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NO WAY! It is not a good relationship between a parent/patient and a physician.

 

and it is not a conversation ANY respectable physician has with parents/patients, they do not even allude to doing it! NO 

 

It is one thing to feel that way (that things might change) and clearly the medical community doesn't feel this is even right, but it is another thing to tell you as a parent/patient that the physician does this!!! That is ethically wrong!  

 

A good test of this is if the doctor would like it done to themselves by another doctor, those in the medical field I know would never respect someone who would do this.

 

 

there is plenty out there that says the same thing - it is not view as a positive!

 

 

 

This position paper will show that withholding information from a competent patient is a violation of the doctor's role as a fiduciary and is not ever justified.

 

Even though there is legal recognition of therapeutic privilege, it is not applicable on ethical grounds. In addition to disrespecting autonomy, withholding information from competent patients does not benefit them in the long run and can actually cause more harm than good. Consequently, a doctor who withholds information from a competent patient unless in the exceptional case of patient waiver violates the ethical principles of autonomy, beneficence and nonmaleficence.

 

The ethical principle of autonomy which protects patient self determination goes hand in hand with truth telling. Lying to and deceiving patients breach the autonomy of individuals and interferes with the doctrine of informed consent.

 

That's a position paper. One person's opinion.  He even says that courts have "recognized the therapeutic privilege as a way of promoting patient wellbeing and respecting the Hippocratic dictum of “primum non nocere” {or first do no harm}" 

 

Again, this is common practice.  A doctor generally does not tell a patient every single possible reaction to a medication.  That's not considered unethical, either.   A doctor doesn't have to tell a parent that there is an incredibly rare chance that their child's skin will peel off if they take a dose of tylenol for teething pain or fever.  

 

The question is does it do more harm than good to tell parents that she sees possible signs of autism at 12 months.  What could a parent do with this information? A child would have be incredibly severe to ever get a diagnosis that young.  A parent that brought their 12 month old to get evaluated for autism would likely be told to come back in 6 months to a year to be evaluated.   Nothing has changed, nothing can really be done.  Again, all it does it cause unnecessary parental anxiety. 

 

Now if a parent specifically asked her if she saw any possible signs and she lied, that would be unethical.  


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That's a position paper. One person's opinion.  He even says that courts have "recognized the therapeutic privilege as a way of promoting patient wellbeing and respecting the Hippocratic dictum of “primum non nocere” {or first do no harm}" 

 

Again, this is common practice.  A doctor generally does not tell a patient every single possible reaction to a medication.  That's not considered unethical, either.   A doctor doesn't have to tell a parent that there is an incredibly rare chance that their child's skin will peel off if they take a dose of tylenol for teething pain or fever.  

 

The question is does it do more harm than good to tell parents that she sees possible signs of autism at 12 months.  What could a parent do with this information? A child would have be incredibly severe to ever get a diagnosis that young.  A parent that brought their 12 month old to get evaluated for autism would likely be told to come back in 6 months to a year to be evaluated.   Nothing has changed, nothing can really be done.  Again, all it does it cause unnecessary parental anxiety. 

 

Now if a parent specifically asked her if she saw any possible signs and she lied, that would be unethical.  

no you are missing it!

 

A respectable doctor DOES say something, it is all in how they say it! They tell you about a concern and how they feel about it, if it is something to watch or something that needs to be seen by someone else. A respectable doctor does not withhold and they DO NOT tell others they do it! 

 

What is the point? If you want a doctor to lie to you I guess you are getting it - why go??? 


 

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Now if a parent specifically asked her if she saw any possible signs and she lied, that would be unethical.  

You do understand about the "wrongful birth bills" and that physicians don't support  those bills or what you are saying? 

 

Not only is it unethical but if she even wrote anything down in a chart and that was seen by another physicians that later told the parents she could be sued.

 

Regardless, why see a doctor for a baby/child well visit to be kept in the dark! That is simply crazy!

 

What happens down the road, IF something is wrong - oh you are just happy you didn't know sooner??? I know of NO parent  that feels that way - quite the opposite, you hear over and over agains, they wish they knew SOONER! Especially with a child with autism!! 


 

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I find that odd and incorrect as well. Our doctors always told us what to look for and said she observed no concerns with our baby. I'd be livid to find chart notes early on that weren't shared with me only to learn later my child is autistic. You can start therapies very early and I'd react to any concern and pay out of pocket immediately. The doctor not sharing his or her concern is a missed early intervention opportunity.

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I find that odd and incorrect as well. Our doctors always told us what to look for and said she observed no concerns with our baby. I'd be livid to find chart notes early on that weren't shared with me only to learn later my child is autistic. You can start therapies very early and I'd react to any concern and pay out of pocket immediately. The doctor not sharing his or her concern is a missed early intervention opportunity.

 

I agree.  I think, particularly given the rate of autism, that any early warning signs need to be taken seriously.  


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Old 03-06-2014, 07:29 AM
 
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I find that odd and incorrect as well. Our doctors always told us what to look for and said she observed no concerns with our baby. I'd be livid to find chart notes early on that weren't shared with me only to learn later my child is autistic. You can start therapies very early and I'd react to any concern and pay out of pocket immediately. The doctor not sharing his or her concern is a missed early intervention opportunity.

I was under the impression that WAS the point about noticing signs early! 

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I agree.  I think, particularly given the rate of autism, that any early warning signs need to be taken seriously.  

How one keeps quite is just beyond ethics and comprehension to me! 


 

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I agree.  I think, particularly given the rate of autism, that any early warning signs need to be taken seriously.  

 

I disagree. 

 

If, from my pediatrician's experience, the vast vast majority of 12 month olds who may have a couple warning signs turn out to be completely fine and normal, why would I want to be consumed with anxiety for the next 6 months- year?  There are so many things that are both normal toddler behavior and possible signs of autism.  Like being picky about table food.  Is that a possible warning sign of autism? yes.  But it can also just be normal toddler behavior.   I do not agree that a doctor should worry every parent that comes in with questions about their picky toddler with the statement that their child may have autism.   Toe walking is another example.  It's actually pretty normal for a toddler that is just learning to walk/cruise to occasionally walk on their tippy toes.  Should she tell every parent whose toddler occasionally walks on their toes that their child may have autism? When in her experience it means absolutely nothing for the vast majority of children? 

 

This, to me, would be like arguing that you think a doctor should tell every parent that brings their child in with fever/fatigue that their child may have neuroblastoma (deadly childhood cancer).  Those are generally the first signs of neuroblastoma, but the vast vast majority of the time a child has those symptoms they simply have a cold or virus.  They do not test a child for cancer every time they come into the doctor's office with fever and fatigue

 

Now if a 12 month old came to her office and their parents had *severe* concerns that would be different. A 12 month old that spends hours every day spinning in circles and shows zero signs of wanting to interact with people/parents would be a different story entirely.  That would be way beyond the scope of just normal toddler behavior and it should be addressed. 


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Double post. Weird. 


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Old 03-06-2014, 08:36 AM
 
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I disagree. 

 

If, from my pediatrician's experience, the vast vast majority of 12 month olds who may have a couple warning signs turn out to be completely fine and normal, why would I want to be consumed with anxiety for the next 6 months- year?  There are so many things that are both normal toddler behavior and possible signs of autism.  Like being picky about table food.  Is that a possible warning sign of autism? yes.  But it can also just be normal toddler behavior.   I do not agree that a doctor should worry every parent that comes in with questions about their picky toddler with the statement that their child may have autism.   Toe walking is another example.  It's actually pretty normal for a toddler that is just learning to walk/cruise to occasionally walk on their tippy toes.  Should she tell every parent whose toddler occasionally walks on their toes that their child may have autism? When in her experience it means absolutely nothing for the vast majority of children? 

 

This, to me, would be like arguing that you think a doctor should tell every parent that brings their child in with fever/fatigue that their child may have neuroblastoma (deadly childhood cancer).  Those are generally the first signs of neuroblastoma, but the vast vast majority of the time a child has those symptoms they simply have a cold or virus.  They do not test a child for cancer every time they come into the doctor's office with fever and fatigue

 

Now if a 12 month old came to her office and their parents had *severe* concerns that would be different. A 12 month old that spends hours every day spinning in circles and shows zero signs of wanting to interact with people/parents would be a different story entirely.  That would be way beyond the scope of just normal toddler behavior and it should be addressed. 

AAP tends to feel differently on the subject, perhaps your ped doesn't follow the AAP ? certainly appears that she does not - most would find that very worrisome! 

 

 

http://pediatrics.aappublications.org/content/120/5/1183.full

 

ASDs are not rare; many primary care pediatricians (PCPs) care for several children with ASDs. In fact, a survey completed in 2004 revealed that 44% of PCPs reported that they care for at least 10 children with ASDs; however, only 8% stated that they routinely screened for ASDs.5

 

Early identification of ASDs is important, because it allows early intervention, etiologic investigation, and counseling regarding recurrence risk.

 

Studies of home videos at earlier ages have provided additional retrospective information that reveals subtle abnormalities in infants who were thought to be typically developing and later diagnosed as having regressive autism.205

 

The comprehensive evaluation will progress more efficiently if the parents are more knowledgeable about the characteristic clinical symptoms of ASDs and can report them more accurately. Some PCPs are reticent to share their concerns with parents, fearful that premature “labeling,” although it is tentative, might cause undo stress and anxiety on the part of the family. However, sincerity, honesty, and admitting uncertainty is appreciated by most parents. On the other hand, concealing a concern and taking a “wait-and-see” approach rarely is appreciated; in fact, this strategy often breeds parental discontent and, worse, resentment and anger. With the recent high visibility in the media, most parents (unlike before the 1990s) now are aware of ASDs and may suspect it and search the Internet for information. It is important that they receive peer-reviewed and consensus-driven information that is evidence based and that they understand how to interpret Web-site information that is not peer reviewed.

 

http://www.sciencedaily.com/releases/2007/10/071029120427.htm

 

The report advises pediatricians to be cognizant of signs of ASD, as well as other developmental concerns, at every well-child visit by simply asking the parents if they or their child’s other caregivers have any concerns about their child’s development or behavior. If concerns are present that may relate to ASD, the clinician is advised to use a standardized screening tool.

 

“Red Flags” that are absolute indications for immediate evaluation include: no babbling or pointing or other gesture by 12 months; no single words by 16 months; no two-word spontaneous phrases by 24 months; and loss of language or social skills at any age. Early intervention can make a huge difference in the child’s prognosis. “Autism doesn’t go away, but therapy can help the child cope in regular environments,” said Chris Plauche Johnson, MD, MEd, FAAP, and co-author of the reports. “It helps children want to learn and communicate.”


 

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Old 03-06-2014, 09:23 AM - Thread Starter
 
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AAP tends to feel differently on the subject, perhaps your ped doesn't follow the AAP ? certainly appears that she does not - most would find that very worrisome! 

 

 

http://pediatrics.aappublications.org/content/120/5/1183.full

 

ASDs are not rare; many primary care pediatricians (PCPs) care for several children with ASDs. In fact, a survey completed in 2004 revealed that 44% of PCPs reported that they care for at least 10 children with ASDs; however, only 8% stated that they routinely screened for ASDs.5

 

Early identification of ASDs is important, because it allows early intervention, etiologic investigation, and counseling regarding recurrence risk.

 

Studies of home videos at earlier ages have provided additional retrospective information that reveals subtle abnormalities in infants who were thought to be typically developing and later diagnosed as having regressive autism.205

 

The comprehensive evaluation will progress more efficiently if the parents are more knowledgeable about the characteristic clinical symptoms of ASDs and can report them more accurately. Some PCPs are reticent to share their concerns with parents, fearful that premature “labeling,” although it is tentative, might cause undo stress and anxiety on the part of the family. However, sincerity, honesty, and admitting uncertainty is appreciated by most parents. On the other hand, concealing a concern and taking a “wait-and-see” approach rarely is appreciated; in fact, this strategy often breeds parental discontent and, worse, resentment and anger. With the recent high visibility in the media, most parents (unlike before the 1990s) now are aware of ASDs and may suspect it and search the Internet for information. It is important that they receive peer-reviewed and consensus-driven information that is evidence based and that they understand how to interpret Web-site information that is not peer reviewed.

 

http://www.sciencedaily.com/releases/2007/10/071029120427.htm

 

The report advises pediatricians to be cognizant of signs of ASD, as well as other developmental concerns, at every well-child visit by simply asking the parents if they or their child’s other caregivers have any concerns about their child’s development or behavior. If concerns are present that may relate to ASD, the clinician is advised to use a standardized screening tool.

 

“Red Flags” that are absolute indications for immediate evaluation include: no babbling or pointing or other gesture by 12 months; no single words by 16 months; no two-word spontaneous phrases by 24 months; and loss of language or social skills at any age. Early intervention can make a huge difference in the child’s prognosis. “Autism doesn’t go away, but therapy can help the child cope in regular environments,” said Chris Plauche Johnson, MD, MEd, FAAP, and co-author of the reports. “It helps children want to learn and communicate.”

 

First of all, your quote "However, sincerity, honesty, and admitting uncertainty is appreciated by most parents. On the other hand, concealing a concern and taking a “wait-and-see” approach rarely is appreciated; in fact, this strategy often breeds parental discontent and, worse, resentment and anger. "  Was from a section called "Provide Parental Education" and the LEADING sentence is "If the PCP feels fairly certain that the child has a developmental disorder that falls somewhere in the autism spectrum, it will be helpful to give the parents reading materials. "  Not "If a pediatrician sees a couple possible warning signs that in her experience mean nothing it will be helpful to give parents reading materials" about autism. 

 

The only "red flags" that are absolute indications for immediate evaluation at 12 months are listed as "no babbling or pointing or other gesture" per your quote.   And that is my point.  A sincere concern is different from any number of smaller things that could also point to an autism diagnosis.   There are a lot more possible "concerns" other than no babbling or pointing that could be signs of autism in a 12 month old.  Not liking to be held is one for example.  But that could also just be the child's personality.  A child being really picky about foods is another one I gave.  Toe walking is yet another.  A friend of mine had a toddler that liked to line up blocks.  She was concerned. Her pediatrician wasn't.  Lining toys up is something that is completely normal for most toddlers, but can also a sign of autism for others.  Her son is now a completely normal 4 year old. 

 

Again, a pediatrician not throwing out that autism is a possibility for every little thing that  a child does that could conceivably point to autism is not unethical in my opinion.  

 

Big "red flags" like absolutely no babbling should be addressed, however, as that generally goes beyond the scope of normal toddler personality/behavior. 


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As far as my pediatrician goes,  I don't know for sure whether she was talking about childhood disintegrative disorder or late-onset autism but she essentially stated the same thing that the other pediatrician I quoted said.   As a first time mom of course it's something I worred about (especially having a boy) and she helped reassure me that she saw absolutely zero symptoms or warning signs in my son. She said that she often notices things but doesn't necessarily worry parents by mentioning them because children all develop differently and many of them turn out completely normal.  She said she has never been surprised by an autism diagnoses in all her years of being a pediatrician, and had noticed warning signs well before the diagnosis.  I think her exact words were along the lines of "I've never had a completely normal child that I had no concerns about leave my office at their 12 month well visit and come back with an autism diagnosis at the next one. Thats never happened to me or any of my colleagues." again, it is happening to others, regressive autism is REAL and account to up to 1/3 % - seems so weird your Ped is not familiar or knowns of no colleagues either even the AAP acknowledges it    headscratch.gif

 

 

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The only "red flags" that are absolute indications for immediate evaluation at 12 months are listed as "no babbling or pointing or other gesture" per your quote.   And that is my point.  A sincere concern is different from any number of smaller things that could also point to an autism diagnosis.   There are a lot more possible "concerns" other than no babbling or pointing that could be signs of autism in a 12 month old.  Not liking to be held is one for example.  But that could also just be the child's personality.  A child being really picky about foods is another one I gave.  Toe walking is yet another. 

 

Again, a pediatrician not mentioning every single little thing that could possibly point to autism is not unethical in my opinion.  

 

Big "red flags" like absolutely no babbling by 12 months etc should be addressed. 

cherry-picking a bit here?

 

Obviously I did not list EVERY sign that is looked for at 12 months! I was not posting the entire paper, that first of all is past the word quota, but it clearly indicate what you are stating about your Ped is not what they (AAP) advises for a PCP to be doing-you many not be concerned or find it unethical but others parents seem to be - so very odd!  

 

The comprehensive evaluation will progress more efficiently if the parents are more knowledgeable about the characteristic clinical symptoms of ASDs and can report them more accuratelySome PCPs are reticent to share their concerns with parents, fearful that premature “labeling,” although it is tentative, might cause undo stress and anxiety on the part of the family. However, sincerity, honesty, and admitting uncertainty is appreciated by most parents. On the other hand, concealing a concern and taking a “wait-and-see” approach rarely is appreciated; in fact, this strategy often breeds parental discontent and, worse, resentment and anger. With the recent high visibility in the media, most parents (unlike before the 1990s) now are aware of ASDs and may suspect it and search the Internet for information. It is important that they receive peer-reviewed and consensus-driven information that is evidence based and that they understand how to interpret Web-site information that is not peer reviewed.


 

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The comprehensive evaluation will progress more efficiently if the parents are more knowledgeable about the characteristic clinical symptoms of ASDs and can report them more accuratelySome PCPs are reticent to share their concerns with parents, fearful that premature “labeling,” although it is tentative, might cause undo stress and anxiety on the part of the family. However, sincerity, honesty, and admitting uncertainty is appreciated by most parents. On the other hand, concealing a concern and taking a “wait-and-see” approach rarely is appreciated; in fact, this strategy often breeds parental discontent and, worse, resentment and anger. With the recent high visibility in the media, most parents (unlike before the 1990s) now are aware of ASDs and may suspect it and search the Internet for information. It is important that they receive peer-reviewed and consensus-driven information that is evidence based and that they understand how to interpret Web-site information that is not peer reviewed.

 

Again, you are using that quote out of context.  It's all in one paragraph whose first sentence is "If the PCP feels fairly certain that the child has a developmental disorder that falls somewhere in the autism spectrum..." and then follows with those recommendations. 

 

"Fairly certain" is not the same thing as a hunch or a suspicion. 


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Old 03-07-2014, 10:41 AM
 
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Interesting stuff. 

As far as my pediatrician goes,  I don't know for sure whether she was talking about childhood disintegrative disorder or late-onset autism but she essentially stated the same thing that the other pediatrician I quoted said.   As a first time mom of course it's something I worred about (especially having a boy) and she helped reassure me that she saw absolutely zero symptoms or warning signs in my son. She said that she often notices things but doesn't necessarily worry parents by mentioning them because children all develop differently and many of them turn out completely normal.  She said she has never been surprised by an autism diagnoses in all her years of being a pediatrician, and had noticed warning signs well before the diagnosis.  I think her exact words were along the lines of "I've never had a completely normal child that I had no concerns about leave my office at their 12 month well visit and come back with an autism diagnosis at the next one. Thats never happened to me or any of my colleagues." 

 

 

 

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Again, you are using that quote out of context.  It's all in one paragraph whose first sentence is "If the PCP feels fairly certain that the child has a developmental disorder that falls somewhere in the autism spectrum..." and then follows with those recommendations. 

 

It would be extremely unusual for anyone, even an autism expert, to be "fairly certain" that a child at 12 months has autism.  How many 12 month old babies do you know with an autism diagnosis? 

 

The thing is…it seems like your pediatrician does notice fairly firm warning signs and then does not share those concern with parents.  Your words - bolded above. 

 

I think a case can be made for always telling patients the possibilities or likeliness of xyz - even if the likelihood is remote. Correct information should be given about the likelihood of  disease or disorder based on symptoms; it should not just be kept from them to prevent them from worrying.  

 

I will say that if I had a child that was diagnosed with ADS and I learned my doctor had suspicions for some time that they did not share with me I would be devastated.  I may even sue, although I am far from sue-happy.  


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Old 03-07-2014, 10:50 AM
 
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I think there is a big difference between withholding concerns about milestones and introducing a premature diagnosis into the discussion.

 

When we visit our pediatrician, they have a milestone checklist where they ask questions and record parents answers and/or their own observations. This is usually done by a nurse, the same way that hearing and vision tests are. I imagine if there were serious and obvious concerns in any one of these areas, there would be some sort of follow-up based on that.

 

If a doc is watchfully following up on missed milestones, and the parent is aware that these milestones are important, then I don't see the problem with not suggesting autism at the first visit where a milestone is missed.

 

On the other hand, withholding even the observation of missed milestones or any concerns about normal development does seem to be problematic.

 

To compare it to the headache screening, the doc should not say "your headache might be a brain tumor" without noticing other symptoms. However, if the doc does notice that the patient has different sized pupils, or that she seems to be slurring her words, this is obviously not something the doc should withhold from the patient to avoid alarming her. These symptoms are important. Still might not be brain cancer, but the patient needs to know that these may be associated with the cause of her headache.

 

A personal situation I can think of is when I went to the doc for an enlarged lymph node. She felt it, agreed that it was a bit swollen but not an issue, and then told me what size would alarm her, as well as other symptoms to look out for. This information reassured me that the current problem was not alarming, but gave me something to watch for. She didn't have to tell me "your swollen lymph node might be cancerous, especially if it gets bigger" in order for me to know that the worsening of the symptoms would call for a prompt follow up visit.

 

I would think missed milestones should be approached in the same way, at least by giving parents something to watch for if development does not pick up.

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Old 03-07-2014, 10:58 AM - Thread Starter
 
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Quote:
Originally Posted by kathymuggle View Post
 

 

 

 

 

The thing is…it seems like your pediatrician does notice fairly firm warning signs and then does not share those concern with parents.  Your words - bolded above. 

 

I think a case can be made for always telling patients the possibilities or likeliness of xyz - even if the liklihood is remote. Correct inforamtion should be given about the likelihood of  disease or disorder based on syptoms; it should not just be kept from them to prevent them from worrying.  

 

Possible warning signs doesn't mean they were firm or she was certain. This was almost a year ago that we had this conversation, he turns 2 in May, but as I said, the gist of the conversation was that she often notices some flags or warning signs that most of the time turn out to mean nothing, as I stated in subsequent posts.  Most of the time it was just a matter of the child needing to catch up which is why she doesn't worry parents by mentioning them, unless they are extremely severe.   

 

That has been her experience.   

 

I'm not sure how that can be taken to mean "Usually, I am fairly certain that a 12 month old child has autism and I just choose not to tell parents."  Thats essentially the opposite of what she said.  She usually *cannot* be certain at 12 months, because so many children end up catching up. 

 

Even autism experts are reluctant to give an autism diagnosis until at least 18 months and it's usually closer to 2 years that one is made. 


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Old 03-07-2014, 10:59 AM
 
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This is a blog, but I thought it had some interesting points on patient/doctor communication.

 

http://www.hospitalimpact.org/index.php/2012/10/17/title_70

 

"Physicians underestimate the patient's desire for health information in 65 percent of the time"


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Old 03-07-2014, 11:13 AM - Thread Starter
 
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Quote:
Originally Posted by ss834 View Post
 

I think there is a big difference between withholding concerns about milestones and introducing a premature diagnosis into the discussion.

 

When we visit our pediatrician, they have a milestone checklist where they ask questions and record parents answers and/or their own observations. 

 

If a doc is watchfully following up on missed milestones, and the parent is aware that these milestones are important, then I don't see the problem with not suggesting autism at the first visit where a milestone is missed.

 

 

Yes, this is exactly what I meant.  We have an "ages and stages" questionnaire that we fill out before each visit.  She looks over is, asks us if we have any questions etc.  

 

There was one area where I was concerned for my son and she just said something along the lines of "It's usually nothing to worry about. If he still isn't doing these things by the next visit we can address it then, but as of right now I am not concerned."  In the next 2-3 weeks it was no longer an issue as he had completely caught up.   I do not think she should have said "This is a warning sign of autism, and it's possible that your son may have it" at that visit yet, unless there were other symptoms that were extremely alarming that went along with it. 

 

That is all I'm saying here, not every little sign has to mean autism, kids just develop differently and I disagree that a doctor should throw out the autism word for any and every possible symptom or "warning sign".

 

The examples I gave earlier like toe walking, being picky about food etc are the headache in the brain tumor analogy.   Now those things combined with other very alarming symptoms like absolutely no babbling, spinning in circles for hours on end, not being interested in any human interaction etc would be like the different size pupils in your  brain tumor analogy. 


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