Autism in the News

There are two articles in the New York Times about the new definition of autism. One is from a writer who was misdiagnosed with Asperger's Syndrome as a teenager. Another is from a pyschiatrist who also complains about the overdiagnosis of Asperger's. 

From a parent's perspective, check out my article in the Atlantic.

In terms of functionality, autism is a spectrum disorder. Some are eventually able to function in normal society. They'll hold down jobs and get married. They are able to function by learning how to compensate for their deficits and by finding employment that takes advantage of the unique strengths. There are others who are so severely affected that they will always need someone to care for them. 

However, autism isn't always a spectrum disorder. One kid can have a very high cognitive level, but struggle with speech acquisition. Another kid can be a fluent speaker at two, but be overwhelmed by stimulation and by a compulsion to stick to routine. One kid can have a photographic memory, and another may be especially good at building things. Sometimes it is incredibly difficult to find commonalities in these kids. 

As autism parents, we must all stick together, because all these kids need help from family, schools, and therapists to help with speech and social interactions or with overcoming OCD tics or with controlling their behavior. They need to have their gifts nurtured. 

For every one kid who is misdiagnosed with autism, there are hundreds of thousands of autistic kids who are undiagnosed. Sometimes, they are purposely misdiagnosed from school districts that do not want to pay for therapy. As any parent of an autistic child knows, that label is the key to getting the help. There is no therapy or special schools for kids who live in the grey area of No Label. 

The new definition of autism is a VERY BAD thing for parents of high functioning autism. While I know that the scientific community's motives in the creating the new definition of autism are pure and based on an interest in science, others are not so convinced. Some parents have whispered to me that this new definition is a plot by the insurance companies who don't want to pay for services any more. I don't believe that, but I do believe that autism parents are stretched to their limit and that these changes will make their lives much more difficult. 

39 thoughts on “Autism in the News

  1. I don’t think much of that psychiatrist.
    He’s probably not guilty of the headline “Asperger’s History of Over-Diagnosis,” but somebody screwed up in writing that. In the English speaking world, Asperger’s has really only been around as a diagnosis since the 90s, and it only came into vogue a few years ago. It may be over-diagnosed now, but there’s no history of over-diagnosis.
    Here are some quotes:
    “Currently, with the loosening of the diagnosis of Asperger, children and adults who are shy and timid, who have quirky interests like train schedules and baseball statistics, and who have trouble relating to their peers — but who have no language-acquisition problems — are placed on the autism spectrum.”
    It’s not clear what attitude the psychiatrist takes toward this, but I think there should be mention of the type of child who has perfect, unchildlike speech, unusual vocabulary, and speaks in paragraphs about their favorite interest, without regard for social conventions such as stopping to make sure that anybody is listening or interested. (In the excellent documentary Autism the Musical, there’s a little boy just like that who goes on and on about dinosaurs.) It’s possible to have perfect speech and yet have autistic affect and be unable to mobilize that speech for normal social interaction. One of the benefits of the Asperger diagnosis is that it covers that situation just about perfectly.
    “…but someone on the autism spectrum could probably never have become a police officer in Lower Burma, as Orwell did.”
    That is quite the non sequitur, right there. I don’t know enough about Orwell as a person to say that he was or wasn’t on the autism spectrum, but the Aspie who blends in by getting absorbed in foreign language or culture or by going abroad is a standard type.
    I think Dr. Steinberg doesn’t know nearly enough to write this article.
    “In addition, many of us clinicians have seen young adults denied job opportunities, for example in the Peace Corps, when inappropriately given a diagnosis of Asperger syndrome instead of a social disability.”
    Speaking as a Returned Peace Corps Volunteer, let me assure Dr. Steinberg that a “social disability” would be quite as likely to keep you out of the Peace Corps. Life as a Peace Corps Volunteer involves a tremendously demanding social environment and Peace Corps administration wants to be very sure that PCVs don’t crack up while living in yurts or mud huts a couple days’ journey from HQ.

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  2. I don’t know what the Peace Corps’ current intake procedures are like, but back in the mid-90s when I was applying, Peace Corps could be very finicky about getting all i’s dotted and t’s crossed, but a lot of times, it was just a question of paperwork rather than a flat denial. It’s largely a test of persistence. For instance, I needed to document that the foot problem and the allergy I mentioned in my forms were not a huge big deal. And even when it is a pretty big deal, as in the case of a PCV colleague who had to take a full allergy-attack kit, it’s mainly just a question of jumping through hoops. We also had a 70-something guy among our group–I can only imagine what his medical paperwork looked like. I don’t know specifically about Asperger’s and the Peace Corps today, but it would not surprise me if the same sort of hoop jumping would settle things.

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  3. I understand the sentiment of your Atlantic article, but wonder if the target is right. People are upset that the definition of Autism is being changed to match current scientific thought.
    To me, the clear culprit is the special school that is set up for Autism (whatever that means), but not for “Sensory Integration Disorder”, “Apraxia”, or “Speech Delay” — which all have clearer/ narrower meanings.
    It doesn’t make sense that there could be a autism “specialty” that would deal with a whole range of non-overlapping issues, from non-verbal to hyper-verbal and everything else on the Dim Sum menu, but no treatment available from the schools for a child with identical symptoms, but is not “autistic.” The treatment should be directed to treat the symptom, not determined solely by the label that the symptom is classified under.
    Then, the scientists can do the science without having to worry that they will ruin people’s lives by doing their jobs.

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  4. “The treatment should be directed to treat the symptom, not determined solely by the label that the symptom is classified under.”
    In some respects, I agree with that, but that’s unfortunately not the world we live in. Labels make life easier, in psychology, as at the grocery store.
    Also, autism is a big enough, complex enough place that I think it makes sense to specialize in it, rather than just breaking it up into separate symptoms and dealing with each in isolation.
    Also, are we quite sure that the new description really does reflect the science? What do actual specialists think about the new guidelines?

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  5. The new definition of autism doesn’t do a better job describing Ian than the other definition. I think they need to subdivide autism into at least three or four different types, based in part on their weaknesses, but also based on their strengths. The major characteristics of Ian’s disability was the speech delay and his ability to decode anything. Everything else – the OCD, sensory issues – are pretty mild.
    But truly I don’t give a rat’s ass what label is smacked on my kid’s forehead. All I care about is that he gets speech therapy. And the only way that he will get speech therapy is with the autism label. That’s it. Because the autism community is highly politicized, laws have been set up to protect those kids. There is no Apraxia lobby to force insurance companies to pay for services.

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  6. I agree with Ragtime that the problem isn’t the diagnoses necessarily, or fully at least, but the application of the diagnoses. We should identify the troubling symptoms or behaviors and then treat those rather than treating specific, identifiable disorders, at least for the kids don’t clearly fit into a category. I realize that there is benefit to a diagnosis as well, especially when it comes to advocacy, but I think the symptom approach would be particularly helpful for those on the boundary of a diagnosis.
    My eight year old neighbor is a kid who is just on the border of a diagnosis. He’s struggled with anger issues from a very young age but he doesn’t fit nicely into of the current disorder groups. Prior to starting school they basically said “eh, autism” so that he would be able to receive special services but now three years into his education it’s become clear that those services are not what he needs. He’s lost his, very casual at best, autism diagnosis and continues to receive services even though it’s generally agreed that he would benefit more from some other type of therapy. Probably he would do best with private therapy tailored to his specific issues but should his parents have to pay for that? I don’t think so but I realize a lot of people don’t agree.

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  7. Congratulations Laura.
    There are two new statistical analyses of the assignment of diagnosis using the DSM V definitions in Child and Adolescent Psychiatry (unfortunately both behind paywalls now — will become available on Pubmed at the 12 month mark).
    http://www.jaacap.com/article/S0890-8567%2811%2900890-2/abstract
    http://www.jaacap.com/article/S0890-8567%2811%2900951-8/abstract
    Neither are simple to read (they’re statistical analysis that look at whether the symptoms cluster in the dimensions used in the DSM V definitions (i.e. communication & repetitive/focused interests and behavior). Both models suggest that the definitions used in the new model have superior “sensitivity” (i.e. fewer false positives). The second study suggests that lower the threshold (i.e. the number of reported issues required for diagnosis) slightly would maintain most of the specificity and also catch more cases.
    I hope that these studies will be taken into account in further revisions (and there will be opportunities to comment on the new definitions) before the manual goes to print in the fall. So I am hopeful that the new definitions won’t be bad for the children. But, I also haven’t had to have become a cynic by years of dealing with diagnosis and services, so freely understand that I might be overly sanguine about the results.

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  8. Congratulations, Laura! You just slipped that accomplishment in so calmly. I would have been all–
    I’M SUCH A BADASS FOR GETTING AN ARTICLE IN THE ATLANTIC!
    Then again, I’m not one for subtlety.
    Great piece, great writing!

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  9. “My eight year old neighbor is a kid who is just on the border of a diagnosis. He’s struggled with anger issues from a very young age but he doesn’t fit nicely into of the current disorder groups. Prior to starting school they basically said “eh, autism” so that he would be able to receive special services but now three years into his education it’s become clear that those services are not what he needs.”
    I have the feeling that a number of psychological categories are kind of fake, as well as often stigmatizing. On the one hand, you have pretty clear-cut stuff like bipolar or depression, and on the other hand, you have more nebulous stuff like narcissistic anger, narcissistic personality disorder, oppositional defiant disorder, borderline personality disorder and so forth. I’m not saying that people in the latter category don’t have real problems, but when reading about these conditions, I get the feeling that the last word has yet to be written on them. The field looks like it is still gelling.

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  10. But this study found that many people would be cut off with the new definition.
    Thanks, Anjali. I am really, really happy about this. Believe me, I’m doing a very happy dance right now.

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  11. The Volkmar study isn’t published, so I can’t comment on it specifically. And, though I might make some arguments based on the NY Times report they’d just be blowing smoke, so not really contributing to understanding.
    The Huff Post has a decent summary of the two statistical analyses.
    http://www.huffingtonpost.com/2012/01/30/dsm-5-autism-spectrum-disorder-definition_n_1241495.html?utm_source=dlvr.it&utm_medium=twitter
    The Huff Post also describes a small study in Finland, in which 26 children who would have autism in the DSM IV definition (and who had IQs over 50) and would not under the new definition. Changing the DSM 5 requirement slightly (2/3 symptoms in Social interaction & communication) brought this number up to 25/26. The Frazier study also said that changing the requirement (5/7 v 4/7) kept specificity strong, while also broadening diagnosis.
    I think it’s possible that results like these will influence a change in the number of requirements for the autism diagnosis in the DSM.

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  12. That’s a funny New York Times article. I was sort of like that author, at least when it came to memorizing poetry. (I can still do, e.g., the Aeneid up to “tantae mollis erat Romanum condere gentum” and at least the silver bells stanza of Poe’s “The Bells.”) Fortunately, I grew up in a very hothouse environment (NYC private school, Exeter), so I didn’t lack for friends. But it might have been different in a typical American school.
    At a later age, I discovered that there are babelicious aspiring actresses who will actually be impressed by a guy who can recite the Richard III/Lady Anne dialogue.

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  13. What Ragtime and scantee said. Instead of freaking out that this particular diagnosis is changing which will deny people services, we should be freaking out that people are denied services if they can’t get a diagnosis. This is relevant to a whole lot of people with a whole lot of issues other than autism. By accepting the “if you don’t have a diagnosis according to this book then you don’t have a real problem that we should help” model, we’re throwing all of them under the bus if we agitate for keeping diagnostic criteria that will help our kids rather than for a system that helps people who need it.

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  14. “By accepting the “if you don’t have a diagnosis according to this book then you don’t have a real problem that we should help” model, we’re throwing all of them under the bus if we agitate for keeping diagnostic criteria that will help our kids rather than for a system that helps people who need it.”
    The school system is an immovable object. Within the school career of any child in the system today, there is practically no hope of getting the schools to switch over to a system where they study all children’s deficits and figure out how to fix them.
    Asking people not to worry about labels is like telling somebody not to worry about jumping off the trapeze, because you’ll be installing a safety net next year.
    That’s one of the reasons we need school choice.

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  15. The Nugent article is very interesting, and intersting from the parent’s point of view, too. I am dying to see the reciprocal article by his mother.
    I can so see a socially well-adjusted mom, who is worried about her weird kid who hides in his room and won’t play soccer (and doesn’t have girl friends) and wanting to find a cause for his behavior.
    The Catherine Lord quote basically is about this kid, the one who gets classified incorrectly, and in fact (“any slightly odd awkward teenager”) being classified with a disorder, in a away that impairs their development rather than helping it. And, one can believe that about the criterion, without believing that Asperger’s is a hoax (like some people do).

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  16. “However, autism isn’t always a spectrum disorder. One kid can have a very high cognitive level, but struggle with speech acquisition. Another kid can be a fluent speaker at two, but be overwhelmed by stimulation and by a compulsion to stick to routine. One kid can have a photographic memory, and another may be especially good at building things. Sometimes it is incredibly difficult to find commonalities in these kids. ”
    This is an idea captured in the line “If you know one kid with autism, you know one kid with autism.” But, the concept belies the whole purpose of the DSM, which is to develop a cluster of symptoms that go together. The hope is that detecting some of the symptoms in the cluster will help you address the behavior that is interfering with the person’s ability to live a satisfying and productive life. Although people with autism surely are a varied sample, as all human beings are, unless there’s some similarity among them, there’s no validity to a DSM classification at all.
    Now, some people may be responding to the change because they do believe that — that there’s no significant validity to the classification, but that right now it’s broad enough that a group of people who need a variety of services can gain access to them. That would actually give me some interesting insight — that the controversy lies in fundamentally disbelieving the common cluster of symptoms that the DSM uses to define autism.
    I’m interested in the topic from a brain development point of view. A current hypothesis about autism and brain development is that local connectivity is enhanced at the expense of long range connectivity in the brain ( to use the jargon, “bias[ed] connectivity towards shorter corticocortical fibers at the expense of longer association/commisural fibers” (Cassanova et al, 2009, J Autism Dev Disord; 39(5): 751-764), available at pubmed.
    Although such ideas are definitely still working hypotheses, the idea of clusters of symptoms that define a disorder in the DSM are driven by the idea that the cluster shares a common etiology and that an accurate description of the cluster will help find that etiology.
    If instead, one doesn’t believe that, that in fact there is no (or little) set of commonalities, and that changes will force people to have to fight the immovable mountains of policy and school systems, I understand the controversy a little bit better.

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  17. Oops, in that long comment (sorry I can’t help myself), I attribute at least two purposes for the DSM (to help a group of people with common symptoms get appropriate treatment and to define a syndrome with common symptoms so that an etiology can be found. I don’t actually know whether the purpose of the DSM is either of those things, or what its defined purpose actually is.

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  18. bj,
    Weren’t you at some point (or was it Laura?) mentioning that autism may be several different things that we are currently lumping together?
    I don’t know if the same is true of attention deficits, but it would not surprise me if that were the case. Foggy inattentiveness and hyperactivity do look very different.

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  19. “Weren’t you at some point (or was it Laura?) mentioning that autism may be several different things that we are currently lumping together?”
    I don’t think it was me, but the possibility that syndromes are actually mixes of syndromes is always a real concern (and it makes the etiology question different). I do think, though, that the people who think that there is a specific deficit of neurological connections in some subset of the DSM IV definition of autism like the new definition, because they think that it might be excluding the mistaken/epiphenomenal symptoms. A prime example of such a change is the old definition of Aspergers as autism without the language delay. People often speak of aspergers as “high functioning autism”, but it was defined in the DSM IV on the basis of the presence or absence of a language delay during development (which apparently also has a scientific hypothesis driven history).
    The task force thinks they are “cleaning up” the definition of autism, so that it is *less* likely to include a group of potentially unrelated (in cause, and potentially in appropriate treatment, though that would be more difficult to figure out — as I’ve said, stimulant medication may help everyone concentrate on repetitive tasks — it’s possible that the same treatment could help a variety of people) developmental issues.
    (BTW, the New York times article by the psychiatrist about over diagnosis of aspergers is weirdly off base for a clinician, because it seems to be redefining autism as a communication disorder, which the DSM V does not do)

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  20. “BTW, the New York times article by the psychiatrist about over diagnosis of aspergers is weirdly off base for a clinician, because it seems to be redefining autism as a communication disorder, which the DSM V does not do”
    What is the “it” referring to in the sentence “it seems to be redefining autism as a communication disorder”?

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  21. PS: Nugent grew up in Amherst, with professor parents, and a sister who is now a playwright. I would have thought that a poetry lover would have been appreciated at Amherst Regional High School as well as at Exeter. But, apparently not.
    Oh, and he and his sister use their father and mother’s last names, respectively.

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  22. “(BTW, the New York times article by the psychiatrist about over diagnosis of aspergers is weirdly off base for a clinician, because it seems to be redefining autism as a communication disorder, which the DSM V does not do)”
    Yeah, the more I think about that piece, the worse I think of it (of course, who knows what was left on the cutting room floor). I looked at Steinberg’s article again, and I don’t think he mentions sensory issues at all. He seems to think of autism as involving a combination of problems with social skills and communication, with the false positives being children who only have social skill problems.
    I didn’t read the Nugent piece in full, but it doesn’t look like he had any sensory issues, which should have been a tip-off.

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  23. Not to paint with too broad a brush, but aren’t psychiatrists generally pretty useless for any purpose except writing prescriptions?

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  24. I think you need to have one post where you talk seriously about autism and a separate post where you talk about how awesome you are to have an article in the Atlantic. It’s too hard to talk about them together.
    What a huge accomplishment as a writer – congratulations!

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  25. “separate post where you talk about how awesome you are to have an article in the Atlantic”
    I think she’s too modest to do this. But, yeah, it’s a big deal, and Laura is good at it, writing the kind of articles I think people want to read and think about.

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  26. This is really interesting:
    http://www.nytimes.com/2012/01/30/opinion/the-dsms-troubled-revision.html?scp=1&sq=suffering%20categories&st=cse
    “But as all those Diagnostic and Statistical Manuals have stated clearly in their introductions, while the book seems to name the mental illnesses found in nature, it actually makes “no assumption that each category of mental disorder is a completely discrete entity with absolute boundaries dividing it from other mental disorders or no mental disorder.” And as any psychiatrist involved in the making of the D.S.M. will freely tell you, the disorders listed in the book are not “real diseases,” at least not like measles or hepatitis. Instead, they are useful constructs that capture the ways that people commonly suffer. The manual, they go on, was primarily written to give physicians, schooled in the language of disease, a way to recognize similarities and differences among their patients and to talk to one another about them. And it has been fairly successful at that.
    “Still, “people take it literally,” one psychiatrist who worked on the manual told me. “That is its strength in a political sense.” And even if the A.P.A. benefits mightily from that misperception, the troubles on the front page are not the organization’s fault. They are what happens when we expect the D.S.M. to be what it is not. “The D.S.M. has been taken too seriously,” another expert told me. “It’s the victim of its success.”
    “Psychiatrists would like the book to deserve a more serious take, and thus to be less subject to these embarrassing diagnostic squabbles. But this is going to require them to have what the rest of medicine already possesses: the biochemical markers that allow doctors to sort the staph from the strep, the malignant from the benign. And they don’t have these yet. They aren’t even close.”
    Hmmm.

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  27. My thinking on this issue is largely informed by my HUGE respect for Thomas Szasz and his “antipsychiatry” work. He suggests that in our society after the Industrial Revolution, anyone who wasn’t productive in the ways that we typically understand productivity was likely to be labelled as mentally ill. There’s another author named Ivan Ilich (not the one from Dostoevsky) who writes about the addiction paradigm and asks whether addiction is real or constructed.
    I struggle with the labelling issue as two of my three kids have struggled with hyperlexia, had that fake canned speech where they basically strung together dialogue from movies and cartoons, had sensory integration issues, stimming, etc. However, I feel really strongly that my kids are not DAMAGED and I’m angry that society is not more accepting of the wide range of difference which comprises humanity. When I teach statistics, I always introduce the normal curve, and we talk about standard deviations — then segue into a discussion of Foucault and his ideas re: deviance. And I’m always reminded of a quote I read somewhere in the gifted community bulletin boards, where the poster suggested that if your kid’s IQ is higher than 145 there would be exactly 1 person in 1000 who was as bright as your child. In a situation like that, it’s not surprising if your kid doesn’t have a lot of friends in second grade. Unfortunately, being in the minority and being deviant look a lot alike.

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  28. “There’s another author named Ivan Ilich (not the one from Dostoevsky) who writes about the addiction paradigm and asks whether addiction is real or constructed.”
    Addiction real or constructed? That sounds worthy of a Sokal follow-up parody.
    http://en.wikipedia.org/wiki/Sokal_hoax
    (Ivan Ilich is a character in Tolstoy’s “The Death of Ivan Ilich.”)

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  29. I don’t see the understanding that many human characteristics are distributed on a continuum as driving anti-psychiatry sentiment on my part. The issue that the psychiatrists are being faced with is that they are trying to define when the deviation from the normal is significant enough that it requires treatment or accommodation. In some sense, one could argue that people could self-select into treatment or accommodation, without having their characteristics defined as being significantly different from the norm (i.e. deviant). But, some treatments have significant side effects and giving them to anyone who requested might be inappropriate treatment. Other accommodations have significant cost (one on one paraprofessionals for students, disability payments to those who can’t work, even speech therapy). Without defining differences that are significant enough to require intervention, who can we decide on treatment or allocate accommodations?
    I do agree, however, that the history is even uglier. In an uglier society, in which all differences were considered deviances, and where it was acceptable to consider some classes of human something different from human, the grayness of the definitions allowed the process to be used to further the racist/sexist/political agendas.

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  30. Topically, this morning, I had a psychologist tell me my son probably had Asperger’s but was very high functioning. She said you need to get enrolled in a medical aid program that pays for services regardless of need and that most providers won’t provide services to those with their own insurance/funds. And that her letter was sufficient to get enrolled. This struck me as odd. We’ll probably give that a pass and go for a second opinion or maybe denial.
    Based on the specifics that came with the diagnosis, I don’t see how those fit the actual criteria for AS. They did match what the school was asking about/reporting. My spouse has been discounting nearly everything the school says as indicative of a vendetta/failure on their part, so I’m a bit hopeful that we can be more deliberate about encouraging social behaviors and the like regardless of what the 2nd opinion says.

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