Reply to Loaded question: MERLD and autism

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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]

and OP, here's a more recent interview with Dr. Camrata on language, where he even talks about his own son, who was misdiagnosed:

https://mitpress.mit.edu/blog/five-minutes-stephen-camarata

Many clinicians conduct what I call a “confirmatory” diagnosis. They start out looking for “signs” or “symptoms” of autism and simply confirm a preordained label without completing a differential diagnosis. That is, they start off with the idea that the late talking is a symptom of autism and confirm that hypothesis if any other signs or symptoms of autism are observed. But this happens even if these “red flag” behaviors are actually relatively common in typically developing children. For example, many two-year-olds throw tantrums, ignore their parents, are shy of strangers, are picky eaters, have large heads and/or toe walk.  No one would pay attention to these “signs” or “red flags” unless a child is also late talking. These traits are then used to justify the autism diagnosis. Evidently, some clinics and some clinicians label all, or nearly all late-talking children as being on the autism spectrum even though we know from population studies that only a small fraction of late-talking children actually have autism.

In order to guard against inaccurate labels, parents should ask the clinician how they arrived on a particular label. More importantly, they should also ask whether this label would be applied if the child were not late talking. Intellectual disability and ASD are both conditions that have severe symptoms above and beyond talking late so that no child should be diagnosed with either of these conditions solely on the basis of their verbal abilities.

I also wish to provide an important caveat. Some late-talking children do indeed have autism or intellectual disability and I have encountered parents who disagree with this label even when my testing shows that a child’s late talking is actually a symptom of one (or both) of these lifelong difficult conditions. These parents are understandably upset and may attempt to argue with the diagnosis. A clinician should always welcome questions and be prepared to explain how and why a label was generated. Even when parents disagree with my diagnosis, I would never berate them or accuse them of being in denial. After all, if the label is accurate, than the symptoms of autism and/or intellectual disability will persist far after the child has learned to talk and the parents will ultimately realize that the original diagnosis was correct. Also, neither I nor any other clinician is infallible so it is possible that the initial label will subsequently be proven incorrect.

Moreover, parents should trust their common sense and instincts and it is a clinician’s job to make sure  that they thoroughly explain a label, what it means and how they arrived at the diagnosis.

As you explain in the book, even though early diagnosis of late-talking children and early intervention are very important, there can be pitfalls of early diagnoses. Can you elaborate on what these pitfalls could be?

The primary pitfall is evident when the early intervention is based upon an inaccurate diagnosis. In medicine, this simple truth is well understood. It makes no sense to deliver a treatment unless an accurate diagnosis has been made. For example, being thirsty is a symptom of diabetes. But no doctor would treat thirst with insulin (which is often used to treat diabetes) unless a differential and positive diagnosis for diabetes was made. Of course, the thirst could also mean that a person was dehydrated or could arise from any number of conditions other than diabetes. And the thirst may not be a symptom of diabetes or any other medical condition. The treatment must be appropriate for the diagnosis!

....

The overwhelming majority of children with autism or autism spectrum disorder are late talking. But, the overwhelming majority of children who talk late do not have autism. Simple epidemiology tells us this must be so. The incidence of late talking is about one in nine or 10 children in the general population whereas even the most generous estimate of autism indicates that only about one in 50 or 60 children have even one symptom of ASD. It is anyone’s guess whether this one in 50 or 60 includes late talking children who actually have been a misidentified as having an ASD. Regardless, taking these figures at face value indicates that less than 1 in 5 late talking children has autism or ASD.

An accurate diagnosis of autism includes not only late talking but also a reduced or absent motivation for social communication. Most talking children are socially motivated and do not display with this key feature of autism. However, because the child is not talking, a clinician must be attentive to nonverbal social engagement when completing a differential diagnosis. There are quite a number of excellent clinician-scientists studying the causes of autism, but currently a specific cause is not known. We do know that genetics play a role, and that the neurological development of people with autism is different in some ways than in other children. Moreover, it is very important that parents and clinicians understand that late talking does not necessarily mean the child has autism or autism spectrum disorders. It is also important that when a late talking child does indeed have autism, that the family get the proper help and begin treatment as soon as possible.

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This is helpful, but I'm not sure that Dr. Camarata's description of ASD diagnostics really reflects the clinicians in this area (DC).  I doubt that anyone at Childrens, KKI, etc, are focusing solely on language development to diagnose autism, but rather on the instruments developed (like ADOS) and a multidisciplinary approach that includes language.  And for me personally, if my child were a borderline case, I'd fine the statistic "1 in 5 late talking children has ASD" to actually be a very strong motivator to seek out early intervention for ASD even in the absence of an iron clad diagnosis.  [/quote]

He is reflective of the language disorder community.  He is not focused on ASD except to rule in/out.  You are picking up on the wrong aspects and only those that meet your agenda.  He does do significant testing looking at all aspects on kids and strongly recommends early intervention.   One thing he does do is look at autism.  There is more to autism than a simple ADOS and you also need to look at a child in a more holistic approach.  Dr. Camarata not only does hours of testing, but takes the time to build a relationship with a child down to playing with them on the floor if necessary to see their social interactions as well as lengthy interviews with parents and looks at medical records.   You keep talking as if you've been to him and had your child evaluated and you clearly haven't so instead you misinterpret things.[/quote]

?? I have no agenda. I do tend to question things when there is only one single doctor in the entire country with supposedly the right answer.  My point, that you have not disputed, is that I think diagnostics in the DC area are pretty sophisticated, so I wanted to engage more about how say KKI or Childrens misdiagnoses ASD. 
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