Loaded question: MERLD and autism
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Anonymous
Nope, toots, it's school age when it's a disorder. Seriously, Ask Dr. C. BTW, you're saying basically saying that Dr. Camarata specializes in out-of-date diagnoses and doesn't follow the DSM. I'm sure he'd love that characterization. Also, please stop with the sweeping generalization about "MERLD" kids. |
Anonymous
You completely discredit yourself when you are consenting. Dr. Camarata does not use the term MERLD for diagnosis but to discuss kids needs. School age is 4-5. |
Anonymous
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This is several years old, but here's a comment from Dr. Camarata on delayed vs. disordered: "In general, a delay means that the child is behind, but will, without treatment, normalize (catch up). So for example, assume two children are not walking at 18 months of age. Child 1 has no medical condition to prevent walking and, by 20 months of age is tearing around just fine making his mother long for the good old days when he was less mobile. Child 1 would be said to have "delayed walking." Child 2 has a form of ataxia, which affects balance and also walks at 20 months, but is unsteady and requires assistance from a physical therapist to learn how to avoid falling. Child 2 has would have 'disordered walking.' If only life were so simple! What if the parents of Child 1 panicked, received a diagnosis of Sensory Integration deficit and received brushing as a 'treatment.' The actual status of walking would be unaffected by the 'diagnosis' and the 'treatment,' but the parents and clinicians may mistakenly believe that the child was 'walking disordered' rather than delayed and may incorrectly believe that sensory integration deficit was a valid diagnosis and that brushing somehow relates to facilitating walking. Substitute the word 'talking' for 'walking' and you can see what sometimes happens with our late-talking children. There is nothing more certain than 'curing' children who would normalize anyway, as long as the 'treatment' doesn't harm the child! So, language delay and phonological delay are simply variations on the developmental timing of the acquisition of these abilities. Language Disorder and Phonological Disorder are DSM-IV diagnostic categories used to describe disruptions in the acquisition of language (or pronunciation for phonology) that are persistent beyond typical development and that require some intervention support to develop." - Dr. Stephen Camarata |
Anonymous
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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. |
Anonymous
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. |
Anonymous
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. |
Anonymous
?? 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. |
Anonymous
Have you done an MRI? You should with delays and an irregular EEG, so I am assuming yes? |
Anonymous
Commenting about categories from DSM IV now 4 years old. Get with the times, PP. |
Anonymous
Most docs will not do an MRI for young kids because they have to be sedated. We asked several times. (not that poster) We did an EEG too. |
Anonymous
He is the leading expert on language disorders. You don't go to through an ASD evaluation for a language disorder. You go to someone who specializes in your child's concerns. We went to Children's speech clinic and they were terrible. They told me my child was fine when I knew better. Luckily his doctor agreed and gave me a referral for a second opinion. A trip out to Dr. Camarata is not very expensive. Its far less than any private pay evaluation here. The trip costs were minimal and a fun trip. And, there are more experts than just Children's or KKI. |
Anonymous
That's begging the question. The topic here is why OP's child is being flagged for ASD; and Camarata's excerpt itself suggests there is a very high co-occurance of language delay and ASD. So screening and evaluating a child with a mixed expressive-receptive language delay for ASD seems prudent, and Camarata makes some pretty specific criticisms about how that is done. My question is whether people have specific experience in the DC area ASD clinics of being misdiagnosed solely on the basis of language. |
Anonymous
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My DS came close to being misdiagnosed as ASD based solely on language. This was in the dark ages before ASD was as common a diagnosis as it is today. He was verbal, but had a long standing MERLD diagnosis (then in the DSM) made in kindergarten. His receptive language scores were pretty much rock bottom; expressive were low normal. He had auditory processing testing at GW and was diagnosed with a central auditory processing disorder. He learned to read. perhaps against all odds and by the grace of a gifted teacher, in first grade.
In second grade he experienced a sudden explosion of tics and weird behaviors. We ended up at Stixrud to do a complete neuropsych evaluation just shy of his 8th birthday and they gave him a PDD NOS diagnosis (again in DSM at the time) based on his language impairment and "stereotypical behaviors." The psychologist seemed not to listen or care when I insisted all these behaviors had just recently suddenly come on, and he reprimanded me for calling them tics. Nor did he seem to care about the auditory processing results. Very little about an ASD diagnosis rang true to me about my DS, particularly the late onset of all this. A friend referred us to CT Gordon, a psychiatrist who deals with a lot of ASD kids and has an ASD kid himself. He quickly came to the conclusion DS did not have ASD, but tic related OCD. As I learned about PANDAS, only very recently written about at that time, I found a doctor who helped tease this out, and we ended with a firm PANDAS diagnosis from NIH. I have learned to question everything experts conclude. Even though I am not an expert, I firmly believe what they say should pass a basic smell test. |
Anonymous
OP said the child was screened and ruled out. Teachers are not trained in diagnosis nor do psychologists, especially school ones have the expertise to tease out the different disorders. So, you are solely using ASD to derail the conversation and discredit MERLD or receptive/expressive language issues. Yes, of course, people have gotten misdiagnosis at the specific ASD as well as developmental ped's. But, that is not why you go see someone like Dr. Camarata. Same thing if our kids did have ASD or another medical condition. I would take my child anywhere in the world if it meant proper diagnosis and treatment. If your child had a specific illness, would you take them to a generalist or someone who specializes in it? You'd travel and get your child the best treatment possible. |
Anonymous
OP said the child was screened and ruled out. Teachers are not trained in diagnosis nor do psychologists, especially school ones have the expertise to tease out the different disorders. So, you are solely using ASD to derail the conversation and discredit MERLD or receptive/expressive language issues. Yes, of course, people have gotten misdiagnosis at the specific ASD as well as developmental ped's. But, that is not why you go see someone like Dr. Camarata. Same thing if our kids did have ASD or another medical condition. I would take my child anywhere in the world if it meant proper diagnosis and treatment. If your child had a specific illness, would you take them to a generalist or someone who specializes in it? You'd travel and get your child the best treatment possible. |