Way back in the day, when I was a newbie at countering the mass of hysterical pseudoscience that is the antivaccine movement, particularly the myth that vaccines cause autism, a blogger by the 'nym of Prometheus taught me that autism and autism spectrum disorders (particularly by antivaccinationists and believers in the quackery known as "autism biomed") are conditions of developmental delay, not developmental stasis. Autistic children can and do exhibit improvement in their symptoms simply through growth and development. However, parents who subject their children to "autism biomed" quackery of the sort championed by Jenny McCarthy and others seem to view autism as a condition of developmental stasis. That's why they so easily and predictably attribute any improvement in their children to whatever quackery du jour they are using on them. It's also why, in order to determine whether a given intervention in autism has any real effect, randomized controlled trials are required. Indeed, it's not so difficult to see why, if you take into account the widespread belief that autistic children do not improve, along with parents' imperfect human memories riddled with confirmation bias, confusing correlation with causation, and other confounders like regression to the mean, so many parents believe that "autism biomed" treatments have actually helped their children. Moreover, improvements observed in autistic children tend to be uneven, with periods of little change interspersed with periods of rapid development. Should such a period of rapid development appear after a "biomed" intervention, guess what gets the credit for the improvement?
But how much improvement is possible? Do autistic children "recover," and, if they do, how much can they recover? The autism biomed movement is rife with stories of "recovered" children, but often, if you investigate these stories, they turn out to be less than convincing, not unlike the way that alternative medicine cancer "cure" testimonials tend not to be so impressive when examined closely by someone not directly involved in the case. However, in the case of autism, this isn't always the case. There are clearly children who lose their diagnosis of autism or ASD, with observations published as far back as 1970, when Rutter reported that 1.5% of adults who had been diagnosed with autism were functioning normally, while 30 years later Sigman et al reported that 17% of autistic children in their group lost their diagnosis and 10 years after that Kleinman et al reported that up to 19% of autistic children "lose their diagnosis." The reason for this observation is hotly debated, and until fairly recently it was often assumed that these children's recoveries were in fact not true recoveries but children who were either misdiagnosed or overdiagnosed. Such an assumption made intuitive sense because such an outcome is more likely with children diagnosed with Asperger's disorder or pervasive developmental disorder, not otherwise specified (PDD-NOS), both of which are categories that resulted from the expansion of the diagnostic criteria for autism. Be that as it may, when you boil it all down, it is estimated that between 3% and 25% of autistic children "lose their diagnosis." However, few of these studies explicitly address whether the social and communication abilities of these children are fully typical.
A recent study might help clarify what degree of recovery is and is not possible. Most of the previous studies before this have been small and did not look specifically at the outcomes people are curious about. Published in The Journal of Child Psychology and Psychiatry by Fein et al and entitled Optimal outcome in individuals with a history of autism, this study got some news coverage last week under titles such as Some With Autism Diagnosis Can Overcome Symptoms, Study Finds; Scientists seek clues in kids who outgrow autism symptoms; Some children outgrow autism: study; Health Buzz: Can Autism Fade Over Time?; and Children 'may grow out of autism'. The authors set the stage in their introduction after surveying the literature, some of which I've touched on above:
Several tentative conclusions thus seem warranted based on prior research: (a) losing the ASD diagnosis is a possibility for a minority of children and, at least for some children, is not due to misdiagnosis; (b) ‘optimal outcome’ is associated with higher cognitive functioning and somewhat milder initial symptoms; (c) residual difficulties with language, attention, executive or emotional functioning may persist and need to be characterized. Definitively documenting the existence and characteristics of individuals who lose the diagnosis of autism has important implications for understanding the neurobiology of autism, the impact of intervention on functioning, and the mechanisms underlying improvement. Structural and functional imaging of this group may shed light on whether brain anatomy and function have normalized, or whether normal behavior has been achieved through compensatory mechanisms. The current project aims to document a group of such OO individuals, explore possible persistent weaknesses in areas central to ASD, characterize the range of treatments they received, and look for biological characteristics through structural and functional MRI.
Basically, what the authors did was to characterize these children who would be referred to by antivaccinationists as "recovered." To do this, they identified a group of 34 children who had had a diagnosis of autism/ASD but no longer meet the criteria for the diagnosis, referred to as "optimal outcome" (OO) above. These children were compared with a group of 44 age- and nonverbal IQ-matched children with high functioning autism (HFA) and 34 children undergoing typical development (TD). What makes this study stand out is that the investigators did something very critical. They were very careful to accept only children whose diagnosis had been made by a physician or psychologist specializing in autism before the age of five verified with a written diagnostic report provided by the parents. Then, as a second step to confirm the diagnosis, the investigators took each report, removed language about the diagnosis, summary, and recommendations but leaving descriptions of the child's behavior. This redacted reporta were then reviewed in a blinded fashion by one of the co-investigators, along with a bunch of "foil" (a.k.a. control) reports from children with non-ASD diagnoses, such as global delay or language disorder. All foils were correctly rejected, and four OO children's reports were rejected for inadequate documentation of diagnosis. The second screen was to have the child's current status evaluated, with clinicians with at least 15 years of experience, who reviewed that the child's Autism Diagnostic Observation Schedule (ADOS) scores were below ASD thresholds and that in their clinical judgment an ASD was not present.
Other criteria included that the children in the OO group had to be fully included in regular education classes with no one-on-one assistance and no education services to address autism deficits (e.g., no social skills training) and that scores on another communication-related test had to be at or above a certain level.
So what next? Well, the authors interviewed the parents and tested the children using several measures, with, where knowledge of group could affect scoring, the tests scored by a researcher blinded to what experimental group the children. These measures included ADOS, Autism Diagnostic Interview-Revised (ADI-R); Social Communication Questionnaire (SCQ); Wechsler Abbreviated Scale of Intelligence (WASI); Vineland Adaptive Behavior Scales (VABS); Benton Facial Recognition Test; Clinical Evaluation of Language Fundamentals-IV (CELF-IV); and the Edinburgh Handedness Inventory. Sex, age, and handedness didn't differ between the three groups, but verbal IQ was 7 points lower in the HFA group, compared to the OO and TD groups, where it was in the high-average range.
The investigators reported a number of observations of their groups. First, communication and socialization ADOS scores didn't differ between the OO and TD groups, although the authors do note that "seven OO participants were judge to have social functioning mildly affected by nonautism conditions, such as anxiety, depression, or impulsivity" and that they will report a full exploration of the psychiatric functioning of all three groups in a separate study. They also noted that by early history the OO group demonstrated somewhat milder social symptoms than the HFA group but that they did not differ in communication or repetitive behavior symptoms. A small number of OO children demonstrated some weakness in the facial recognition test, but it was not statistically distinguishable from what would be expected in the population at large. Overall, by the measures used, the OO children were for the most part indistinguishable from TD children. It was also reported that the children who fell into the OO group also tended to have slightly milder autism upon diagnosis than the HFA group by the ADI-R and SCQ-Lifetime results. Basically, their social deficits seemed to be less marked. However, their language delay and repetitive behaviors were similar to those of the HFA group, at least within the limitations of recollections an documentation from a decade or more before (the mean ages of the groups ranged from 12.8 to 13.9 years).
Of coure, the biggest limitation of this study is that it says nothing about what percentage of autistic children can achieve the "optimal outcome" of losing their ASD diagnosis about what interventions are most likely to facilitate such improvements. The review article from Helt et al that I mentioned before estimated that between 3% and 25% of children diagnosed with an ASD "lose the diagnosis." However, the percentage who would have achieved this without intervention is unknown. Clearly, a lot more study is needed.
This most recent study (Fein et al) is in line with a study from last year by Fountain et al, which showed up in some media reports last spring. This study reported that approximately 10% of children diagnosed with autism/ASD by age 3 "bloomed"; i.e., they improved rapidly, to the point that by age eight they were high functioning. Similar to Fein et al, Fountain et al observed that repetitive behaviors don't seem to change as much and that it's mainly the social and communication dimensions where huge variability in outcomes is seen. Fountain et al also found these correlates with "blooming":
Bloomers differ from other children with respect to intellectual disability and socioeconomic characteristics. Among young children with severe autism, those most likely to “bloom” are those without intellectual disability and those with more educated, nonminority mothers. Although we are unable to identify the specific mechanisms through which socioeconomic status affects trajectory outcomes, the intervening variables likely include home and neighborhood environments, quality and intensity of treatment, quality of education, the efficacy with which parents are able to advocate for their children with institutions providing services, and many other factors in various permutations. If this heterogeneity in outcomes is associated with parental and community resources, then equal access to early intervention and treatment resources for less-advantaged children is vital. Although some trajectories may be associated with different etiologic drivers, if etiology alone were driving outcomes, we would be less likely to observe the strong socioeconomic effects unless socioeconomic status was associated with exposure to some biological risk factor for a particular autism subtype.
Not surprisingly (at least not to those of us who have followed the antivaccine movement), it is the autistic children born to the types of parents most likely to be antivaccine (more educated, non-minority, higher socioeconomic status) who are most likely to "bloom," no "biomed" intervention necessary. That's why, when evaluating whether an intervention of any kind, be it behavioral, medication, or even "biomed," "works" in autism, it is essential to have a prospective randomized controlled trial. To see what I mean, I'll refer you to a blog post that is six years old but still very relevant. It's by Prometheus and entitled, appropriately enough, Listening to Autism. He begins by pointing out that parents, because they observe their children every day, believe that they understand their autism better than anyone else, even experts. Of course, it's equally, if not more, likely that they are so close to their children that they can't be objective and that their lack of objectivity can profoundly color their observations and thus lead them astray (confusing correlation with causation, for instance, or mistaking regression to the mean for real improvement), but few of them ever seem to acknowledge, much less accept, this possibility. Prometheus then goes on to discuss the prototypical example of an autism "biomed" treatment: Secretin.
Secretin first hit the scene in 1998, when it was first reported that a single injection of secretin, used as a routine part of endoscopy, appeared to dramatically improve the language and functions of an autistic child. This reporte led to a lot of excitement, a lot of use of secretin, and a bunch of studies of many varieties, short-term, long-term, case series, and, eventually randomized trials. Many of these studies did not support the initial results. Finally, there was a randomized clinical trial done by Repligen, the company that sells Secretin, that was negative. Today, the scientific consensus, as described in a Cochrane Review and multiple other reviews of the scientific literature, is that secretin does nothing for ASD symptoms and that its use in ASD warrants no further study.
None of this stops the autism biomed crowd from advocating and using secretin. If you go to, for instance, the antivaccine crank blog Age of Autism, you will from time to time find commenters extolling the virtues of secretin long after the science has been settled. Other websites still tout it, as well. Indeed, the Florida branch of the Scientology front group Citizens Commission on Human Rights (CCHR) recently argued that the reason the scientific trials of secretin were negative was because the investigators used a "synthetic" version of secretin, while the "dramatic improvements" came from a "natural version" of the hormone from pigs. In other words, some parents and quacks still swear by secretin, even though the evidence is even clearer that secretin does nothing for autism than it is that vaccines do not cause autism.
To explain this, combined the results that I just discussed above with a tale that Prometheus tells, which he calls the Tale of the Lucky Stockbroker:
Long, long ago, a smart fellow decided that he would try to make a lot of money in the stock market. Having watched the market for some time, he realized that the best way to make money on stocks wasn’t to buy and sell them, but to sell expert advice.
Knowing that most people who invested in stocks were wary of advice, he set out to prove to people that he had a special power for knowing when stocks were about to go up or down. He got a list of a ten thousand people who were avid stock traders and sent each of them an e-mail describing his services (and fees) and giving them a “sample” stock pick.
Half of the prospective customers got an e-mail saying that the stock would go up in the next week, and half of them got an e-mail saying that the stock would go down. At the end of the week, the stock he picked had gone down, so he sent another e-mail to the five thousand people who had received the “correct” stock advice.
Half of the five thousand got an e-mail saying that another stock would go up in the next week; half got an e-mail saying it would go down. At the end of the week, he sent out another e-mail to the remaining 2500 would-be customers.
At the end of six weeks, he was down to a little over 150 potential customers, but those 150 has seen him make six correct stock predictions in a row! The last e-mail he sent them was to tell them that they could continue to get these predictions only if they bought a five-year subscription to his service.
There is no claim that autism "biomed" quacks are deliberately doing something like this, although perhaps a few are. However, in effect they are doing something like this. Parents who seem to see results, nearly always due to random chance alone and the human tendency to confuse correlation with causation, will convince themselves that whatever treatment they have chosen is "working." Given that the very parents who tend to gravitate towards autism biomed treatments tend to be the same parents who blame their children's autism on vaccines, this should not be surprising. They are already likely to easily confuse correlation with causation. Because children, autistic and non-autistic, develop in "spurts," it's very easy to think that a treatment that by chance alone happened to be started right before a period of rapid development, was the reason for the improvement in the autistic child's symptoms, even if it were homeopathy (i.e., water) that was used. Meanwhile, the parents who don't see any improvement will drift away from the "treatment," frustrated that it "didn't work." Others lash out at any suggestion that autistic children can "recover" spontaneously or with something other than quackery, for instance, Kim Stagliano of the antivaccine crank blog Age of Autism:
Oh! And did you hear some kids "outgrow" their autism. Yuppers. In the Catholic Church we call that a miracle. When Jenny McCarthy told the media her son had lost his diagnosis she was called a liar. Turns out that the only way to lose the diagnosis is by doing nothing. Jeez, I'm always the last to know... I could be driving that Camaro I'm constantly talking about on Facebook with the money we'd have saved.
I'm not sure why there is such hostility here. My guess is that it's the implicit conclusion that a significant but unknown percentage of children with autism/ASD can develop rapidly and ultimately fall into the neurotypical group. It doesn't even much matter, for purposes of the observation that "outgrowing" autism is possible what the mechanism is. The authors propose other possible explanations besides development resulting in brain function that is more neurotypical, for example:
A pressing theoretical question is to what extent brain structure and function have normalized in the OO children. It is possible that effective early intervention plus maturation have resulted in the normalization of pathways and functions or even anatomical structure. Dawson et al. (2012) were able to show EEG evidence of normalization of cortical activation in response to faces versus objects in children receiving Early Start Denver Model intervention for 2 years in early childhood, supporting this possibility. Alternatively, successful intervention may have resulted in compensatory functions, such that overt behavior is normal, but atypical pathways or levels of activation are needed to achieve these behavioral results, as has been shown, for example, in dyslexia by Eden et al. (2004). Structural and functional MRI data were obtained from a subset of each group in the present study and are being analyzed.
More likely, it is a combination of factors. Whatever the case, if anything, Fein et al should provide hope to parents of autistic children by emphasizing that autism is not static and that it should be possible, depending upon the mechanism at work in these children who "grew out of" their autism, to identify science-based personalized strategies to maximize the potential of each autistic children, not to mention the chances that they can eventually function as fully independent members of society living productive lives.
All of this brings me back to Prometheus. Years ago, back when I was but a pup of a skeptical blogger (or maybe when I was a mere TI-82 compared to the Tarial cell-fueled Plexiglass box of blinking lights and skepticism that I've become), Prometheus taught me a lot, which is why I wonder: Whatever happened to him? He hasn't commented here in a long time, and, although his Blogspot blog is still there (albeit not updated in well over five years), his personal blog that he moved to is no longer there. It saddens me, almost as much as antivaccinationists sadden me.
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Got ASD kid's IEP report last week.
He's done remarkably well this year, and made much more progress than in any year previous. He still clearly has deficits, but now they are smaller deficits.
Diagnosed at age 4, current age 9.
Interventions: Special education age 4 through the present with occupational therapy and speech therapy as provided by our public schools.
Medications: none
Supplements: children's multivitamin
Diet: self restricted, but growing slowly
Studies enrolled in: none
Primary deficits: language, social, behavioral, attention
He's in no danger of losing his diagnosis, but he may qualify for a less restrictive classroom next year.
I did look into some studies, but they were looking for participants with significant cognitive deficits.
@Orac
I, too, have wondered what happened to Prometheus. I always enjoyed his posts.
As to the anger, I can imagine that there is some frustration over spending loads of time, money and energy trying various things only to find out that patience was all that was needed. Or anger at seeing that other kids are progressing and losing their diagnosis, but yours aren't.
What worries me are the parents who see their children as "lost" or "no longer there" once a diagnosis of autism is made. It makes me worry that they then abandon their children or regard their children as less than a person and more of a nuisance.
Of course, not being a parent myself, I really can't gauge how that goes. But I have seen news reports and case studies of abandonment of children on the spectrum.
I 've also been wondering about Prometheus...
come out , come out, wherever you are, Mister! Please.
Some of the sites I watch advocate alt med "cures" that have no basis in reality or SBM.
I've read many parents who proclaim vistory over autism whilst trumpetting the latest woo ( today @ TMR, features chiropractic for autism) or speak about their diligence in follwing the myriad supplement prescriptions and dietary proscriptions, looking out desperately for any minute change in how the cbild behaves as proof positive that yes, the cure is finally arriving. They vow to soldier on if it hasn't arrived as of yet.
As Ren mentions, thinking your child isn't a real person or is deficient, might in some cases lead to abhorrent actions.Apparently, subjecting children to alt med voodoo isn't off the table either.
The loss of "five simple graphs" really hurts, it was the best demolition of the autism epidemic.
I should add that fortunately, some of their frustration and aggression is aimed in SBM's ( and our ) gneral direction instead of on the child.
I did not realize that Photon in the Darkness was gone. Hope "Let's Put on a Study!" is cached somewhere; it is an absolute classic. It was also a hoot watching him patiently dismember Dolchniak's flights of fancy.
Ren: By 'abandonment' do you mean physical abandonment or emotional abandonment? Just asking for clarity.
Personally, I wonder if some of the kids who are subject to rampant quackery just grow so terrified of their parents that they learn to mimic being 'normal.' I learned to do that with my peers- I still rarely talk about anything I'm actually interested in to my friends. It's easier just to pretend an interest in something they like.
I don't know if all autism kids can get "better", but I do know mine can, and did. Because he's been working at it, and he's got a good head on his shoulders (which he probably got from my wife.)
I believe some kids can and some can't, it's always about the people around them and how much time we spend with our autistic kids. How they are integrated into our society and how well they are received by our family and others at schools and other groups.
Did I miss some of the points made in the study? I know the children in this latest study were age-matched, but what were their age ranges? I think my interest in this is derived because older autistics state they have "adapted" (learned) how to be able to "read" social cues during their interactions with neurotypical folks. Along with my *theory*, is it too far a stretch to assume that younger autistics have not fully learned how to "adapt" and those who "lose" their ASD diagnosis have done so, because of maturation? I'm open to any opinions and I know you will all tell me if my *theory* is too far out there.
@ Anj: I'm quite interested in your child's "self restricted but growing diet". I have some friends with younger children who severely "self restrict" their diet. Could it be a texture of food "thing" and what would be some suggestions to have a child "try" different textures/tastes?
I remember Prometheus' brilliant 3-part review of the Latex allergy/autism book and I participated in that discussion. A short time after that he discussed ICD medical insurance codes for getting physical, occupational and speech therapies for children with ASDs. One of the posters was questioning why a "simple ASD" ICD code shouldn't suffice to have therapies covered. (There is no such thing as an ASD ICD code). Gee I miss him and his Photon in the Darkness blog.
Thanks for the shout-out, Orac! I'm still alive and well, but I had a change in jobs and now am too short of free time to 'blog. At the end of the year, when the bill for hosting arrived, I had to face the fact that I hadn't posted in months and decided to let the 'blog go dark. Maybe when things settle down (something I've been fruitlessly waiting for these past decades), I'll resume the 'blog.
As for the "recovery" from autism, this is something I've observed for nearly 15 years. When children are diagnosed with autism - usually between 3 and 6 years of age - there is ABSOLUTELY no correlation between the degree of disability seen at that time and their eventual functional level. I've seen a number of children who - with no "biomedical" treatment, no ABA, no swimming with dolphins, etc - went from non-verbal and no eye contact at age 5 to "indistinguishable from peers" at age 10. As I've mentioned before, There are also two children who were diagnosed at roughly the same time (and age) as mine who underwent the "full Monty" of "biomed" and are both still essentially non-verbal (at over 16 year old).
I expect that many of the "biomed" proponents will find these studies very upsetting, since they show that the stories of "recovery" attributed to "biomedical" (and other "alternative") treatments can be more readily attributed to spontaneous improvement.
Thanks,
Prometheus
@Prometheus
Glad to hear you're still around. If it would help, at all, I'd be willing to donate to bring Photon in the Darkness back online. There are a lot of really great posts there that deserve to be seen. I've referenced a few, myself.
Prometheus you made my day!
I hope that you find a way to reactivate your blog, but there is NO excuse for you to not come posting here or on other science blogs, in the meantime.
-lilady
because older autistics state they have “adapted” (learned) how to be able to “read” social cues during their interactions with neurotypical folks
One gap in this paper is that the authors "interviewed the parents and tested the children using several measures" -- but they don't seem to have asked the children themselves whether they felt their social function had improved, and if so, why.
herr doktor -- possibly, but since autism tends to be diagnosed based on testing and the observations of others, I think the way they did it makes sense. You want to compare not based on perceptions but based on whether or not they would receive the diagnosis.
Good to learn that you're still around, Prometheus. A well-crafted comment of yours features in a blog post I wrote in January 2011.
I have "forever" been meaning to write a post encouraging scientists that if they can't or are reluctant to blog, they can still comment! Comments can be useful, too, as I guess the one of yours I quoted in my post illustrates.
@ Politicalguineapig:
A few things:
in a way, everyone tolerates others' stuff - usually in order to realise a mutual exhange wherein the other eventually tolerates YOUR stuff: the abilities to do so- delaying gratiification, taking the role of the other, thinking recursively etc- are what develops over a long period of time, usually pre-university. At least I would hope so.
Although conformity and imitation can be useful in aculturation, learning and peace making still, I'd question why you should have to be the one who always gives without getting much back. Why? Are they better? Or is it because their interests are more commonplace ? Doesn't necessarily make them better. Perhaps you're cleverer than your friends are. If you have a wide variety of interests, it's easier: most of the people I hang around with aren't exactly mavens of pop culture- it's more about serious issues like politics, economics, culture...and non-stop sarcasm.
If I saw an imbalance happening myself, I would try to gently remind them that I am part of this equation as well: "Lookit, I stand your crappy ideas, 'bout time you listened to my stuff... etc."
And yeah, this is a women's issue.
@ Prometheus:
Glad you're here!
Grant: Mostly it's because all of my friends are younger than 30, and I have interests that are pretty far out of the mainstream. (They're also mostly suburban white girls)
I do have a few friends who like nerdy stuff, but my instinct is usually to just smile and nod and play along. I have no male friends, which makes it both easy and harder- guys are sometimes easier to read, but they're hard to communicate with. And I can't talk about politics with my friends- almost all of them go to church, and in America, God's a Republican.
Orac mentions Kim Stagliano's "hostility"-
I was surprised ** to read her description yesterday ( re-printed from an older post) about what it would be like if a public figure had a child with an ASD. It seems to me that she is terribly angry at a woman she doesn't know who has two NT daughters.
** not really.
@ Politicalguineapig:
It was me, not Grant ( although I'm flattered to be mistaken for him )
What we're discussing bears relevance to what Orac is writing about. How do people relate to others, fit in. learn social skills etc.?
AND I would add, learn how to represent ones' self truly amongst others. It's no easy task and we're all works-in-progress.
Did anybody think to ask autistics themselves whether they "get better"?
Autism is a condition of developmental *difference* which gives rise to delays in certain aspects of development. Autistic brains are like NT brains in that they can learn how to cope with stress, but coped-with stress is still stress; and the differences that cause an autistic person to be particularly stressed by something don't magically go away because the person has learned to cope.
Jeff -- That seems very apt. It certainly reflects my own personal experience with ADD. I still have it. It just isn't impairing my life. I think that's the only meaningful thing that "outgrowing" autism could mean. It's not like outgrowing an allergy, or a baby outgrowing colic. They just take a different road to get where they're going than other people. But as long as they do get there, folks don't notice so much anymore.
I'm late to comment but regarding outgrowing autism, I always ever thought that I was normal with nary an issue but in hindsight, I always had been different. For the moment, I pass as normal if I don't say I am autistic.
Alain
p.s. I received my diagnostic in 2004.
@ Jef:
@ Calli:
And there will always be differences amongst people ( NT or not ) on particular social and/ or communcation skills, including what we call social cognition. Not all NT people fare the same, either.
Just like there are differences in numerical or verbal ability or ability to draw, in music, etc.
Correction:
That should be @ JEFF and
communication TASKS
@PGP
Do you live where you can't get new friends?
(And no, I am not being snarky).
The Autistic Self-Advocacy Network has posted a response, which I will quote in full.
http://autisticadvocacy.org/2013/01/asan-statement-on-fein-study-on-aut…
ASAN Statement on Fein Study on Autism and “Recovery”
Emily Willingham has her usual nuanced and incisive take:
http://www.thinkingautismguide.com/2013/01/can-people-really-grow-out-o…
It reads in part:
So. What autistics think about this study.
I had been thinking about Prometheus and lo and behold. I'm so glad that your absence is for (hopefully) mundane reasons. The internets are a better place with you in them.
DW: LOL, sorry. My attention's been kinda gone over the last couple of days, and I'm not good at keeping track anyway. I tend to be quiet, and had manners pretty much drilled into me, so I *pass* as a polite, sociable person.
Calli: Another person with ADD. I didn't outgrow mine, either. Somedays, it's good, other days, I get so distracted I never do anything productive.
Shay: I don't drive and I don't really have time to cultivate new people, despite volunteering and the occasional concert. So, no. And I do like them, really, I just wish my circle wasn't so vanilla.
And for everyone's viewing and listening pleasure**, from AutismOne.org, a new video-
Dr Wakefield on Alex Jones Talks About the Recent Awards Given to Children with Autism as a Result of the MMR Vaccine
** it's a family tradition- we say exactly the reverse of what we mean sometimes
Politicalguineapig:
My youngest was just diagnosed with it. I told our pediatrician that I was unsurprised by the diagnosis, because so many people in my family have it, including me. Probably intending to be complimentary, she said that obviously I had outgrown it. I corrected her, saying that no, I have not outgrown it. I've just learned to get through life with it, so you wouldn't be able to tell easily. So I don't think there is widespread appreciation of how seeming normal on the outside doesn't mean you're normal inside.
(For clarity, the pediatrician didn't diagnose her. We went through the same pediatric psychologist who diagnosed her older sister as PDD-NOS, because we were impressed at the level of thoroughness in the testing.)
I too was very appreciative of posts from Prometheus. Especially the civility of his posts.
I've been missing Prometheus quite a bit lately too. His series deconstructing M. Dochniak's latex/autism woo is some of the best skeptical writing I've ever come across.
Luckily the WayBackMachine has preserved the series:
http://web.archive.org/web/20121019121802/http://photoninthedarkness.co…
What ever happened to - "nothing about us without us"
Coincidentally, I just came across "Let's Put On a Study!" yesterday and saved it in my files. My thoughts echoed Ian MacGregor's: I appreciated his civility, and that he was able to teach so skillfully when responding to crazy people.
I miss Mrs. Woo. Her stories about Mr. Woo were entertaining.
My take on "recovery" is that "once autistic" is, in a certain sense, "always autistic": The definition of autism and subtypes thereof is, to a large extend, one of pathways of development. In those terms, it is very defensible to say that someone who is "autistic" in one phase of development belongs on the "spectrum" of autism even if they ultimately "lose" those characteristics.
David N. Brown
Mesa, Arizona
1. Oh Prometheus, how I miss your wit and wisdom.
2. I have a long post from the Autist Self-Advocacy Network in moderation
Also, Kristina Chew on "recovery"
http://www.care2.com/causes/can-autism-really-be-cured.html
Emily and Kristina are setting up resonances in my mind with all the trans bloggers I've been reading this week, some people who are pushing back against narratives that define living a successful trans life as seeming to be cis, and which furthermore measure that "seeming" according to narrow criteria that by no means all cis people meet. Must think more about this...
???
Please translate into English.
Vasha - Same here. Sometimes "passing" is elevated to #1 priority ahead of health (mental and physical), happiness, and ability to function. It doesn't help that so many GID gatekeepers (psychs, surgeons, clinics etc) insist on strict gender essentialism and binarism in order to access medication and surgeries.
Stipulations that would be considered shockingly backward for cis people (ie. no jeans for women, no long hair or jewellery for men, compulsory heterosexuality across the board) are often routine for people wishing to access medical and/or surgical transition.
It fits in perfectly with expectations of non-NT people. Behaviours/attitudes considered "quirky" or "carefree" in NTs become pathologised in non-NTs. The reverse is also true. Sticking to predefined behaviours, absolute consistency with social norms, and using others as models for "appropriate" behaviour is "progress" and "optimisation" for non-NT people, and "inflexibility" and "uptight stuffiness" in NTs.
As with the treatment and judgement of any and every marginalised group, there are serious double standards at play.
@Chris - without knowing who you're addressing (you don't give any clues, it seems very out of character in that respect) I can only suggest Binging* googling key words.
FSM only knows what my history looks like with searches like "herxing", or "fictionkin", or "docking". Usually end up down the wiki rabbit hole, only to emerge two hours later wondering "Why?" and "Seriously?".
*Sorry Microsoft. It'll never catch on.
My son was diagnosed with dyspraxia at the age of 4 which is related to ADHD and autism affecting coordination, balance, speech etc.. It wasn't severe - he was very articulate and sociable but it affected his ability to draw, write, hold his balance and other things kids his age should be capable of. While he still exhibits some of the symptoms 3 years on, his scores for various abilities are now mostly crept up into the low normal range compared to where they used to be.
Whether that is down to all the occupational therapy, motor skills classes, swimming etc that we got him involved in or would have happened naturally I can't say. What I can say is he has improved and it does not seem implausible to me that related conditions could also exhibit signs of improvement too .
Self restricted used to mean mostly starches, bland and sweet preferred.
He's not a fan of veg or fruits, but will eat some occasionally.
He likes certain cheeses, but not others - bland mozarella, strong blues and aged goat cheeses.
He doesn't much like meat, but that's changing.
His health seems good. What suffers most is my cooking, since there's not a lot of profit in cooking a meat and potatoes meals where he won't eat the meat, won't eat the potatoes and picks at the veg and eats his applesauce. I don't plan on eating from his menu constantly either.
@ Chris:
'cis' and 'trans' as same and cross- as in Atlantic, gender etc
@ elburto:
I think that you make a very salient point.
Whenever a person is labelled as 'non-standard' - such as those you mention- their proclivities become a great concern - g-d forbid they deviate from the mean! Whereas those considered 'average' are permitted greater variability. So I'm straight and NT therefore liking to wear clothes that might be considered 'masculine' and fretting over patterns of numbers ( alright, alright, they are market averages and I do have money there- but you get my point) are considered
just fine.
There isn't just an autism spectrum but many spectrums of abilities and interests, not binary categories.
-btw- Freud made a related point about symptoms- sometimes an activity that might be considered a symptom is given societal sanction ( I think he compares obsessional actions with a nun using a rosary- I can't recall offhand where that is, perhaps in " Civilisation....").
Thanks, Ms. Walter. It still does not make me understand what Vasha is talking about. I guess I read the wrong blogs.
@ Anj: Thanks for replying to my questions about "self-restricted diet". Odd that he now favors mozzarella...and also pungent cheeses. I'm sure you are pleased that your guy has made some progress toward a more balanced diet.
@ Chris:
-btw- I'm not a Ms, I'm just D.
see what I say to elburto above.
There's a whole lot about 'rigid categories' that I can't go into because it would take weeks.
Sorry, Denice. It is an ingrained habit from growing up a military brat.
Everyone was addressed by their title and last name. All men had a rank, all mothers and teachers were "Mrs." (though rarely one was a "Miss"), and for a while I thought that "Mr." was the rank of the school principal (about the only civilian adult male I knew before the fourth grade).
By the way, I still read the wrong blogs. It may be due to my age, and not really caring about how someone dresses* (other than asking my older disabled son to put on a belt so he would stop mooning me when his pants slip down).
I understand that there are great differences in the abilities, personalities and issues with in developmental disabilities. My older son was diagnosed with oral motor dyspraxia before the DSM IV was released. I was assured he was not autistic, because he was a happy engaging little boy.
There was improvement, but things seemed to deteriorate after he was diagnosed with HCM. He was no longer able to do the one social activity he enjoyed, soccer. He became more withdrawn, and the high school psychologist said he seemed more "autistic." And then mentioned he got more services with his IEP (since it was based on his needs) than he would have had if he was in their official autism program.
There are other psychological issues going on that may or may not have anything to with the factors that prevented him from having any speech as a three year old.
* My two younger children are very snappy dressers. My daughter wore spike heels to take the SAT. My younger son wore vests and cravats in high school, while some of his marching band friends wore kilts.
Chris -- see here: http://freethoughtblogs.com/nataliereed/glossary-and-guide-to-terminolo…
Even with the definitions, the reference is lost on me: because I have no reason to read those blogs. Sorry.
Perhaps I should note that I have heard (and say) that if you have met one disabled person, you have met one person. Not all of them.
This is something I have had to tell parents of kids not getting special ed. services when they have made incorrect assumptions. More than once I had to tell someone that the program my son was is was not for violent tendencies but for lack of speech/language. Though they never assumed issues of violence for the program across the hallway: deaf and hard of hearing.
(the program my son was in was a direct off shoot of the impaired hearing program because after the first version of IDEA was enforced the school was now getting kids who could not speak, but who could hear... prior to the mid-1970s kids like mine were often assumed to be mentally disabled and denied access to public schools)
That would also mean that if you have met one person with autism, you have met just one, not all. That could also be said for anyone who trans, cross, cis, male, female, heterosexual, bi-sexual, homosexual, wearing a skirt, humanities major, scientist, military, civilian... and the list goes on.
Though I could be considered transgender, or transsexual (or ex-), the definitions in Vasha's link are a bit lost on me as well. Things have changed a lot in over 30 years. I'm a bit atypical I suppose.
... and feeling my age. It must be an age thing.
Though watching the attitudes on kids and disabilities change over the last twenty plus years has been interesting, and some things were not for the better.
Mark my words, spats are going to return someday.
@Narad
I'm just waiting for the return of tall boots for men.
And cummerbunds.
@ Narad:
@ Todd W:
@ herr doktor bimler;
Oh Lord
And I thought that I was bad!
Seriously I bought a lightweight tweed coat
the other day that looks like something a guy who worked in an office would wear on a 1940s noir film.
Looks different on me though.
It's true, I'm not even sure where I've put my cummerbund. Then again, dotted swiss in maroon isn't all that versatile in the first place.
Narad's cummerbund is moribund.
I'm not sure about either cumberbunds or maroon ( depends on which maroon) but dotted swiss is out.
Dotted swiss... it would be very difficult to get properly done pleats.
And, I wore the de rigueur teen outfit...a long time ago
http://www.ehow.com/info_7778015_1950s-circle-dresses-full-skirts.html
I've also got shoes in the back of my closet that are older than you are, Chris. :-)
My date for the junior prom wore a hoop skirt. Good time getting that through the bus door.
I was a gray felt skirt with a felt "poodle" glued on it.
Uh-oh, fashion. Not my long suit. My twin dresses well with suits from Goodwill. Defensive on account of poor clothes as kid, I continue to pretend that it don't matter as long as I'm in shape.
Good to read today's post & discussion. It's relevant to some of my family dynamics.
I did not go to the prom because my group of nerds was doing a group thing, and my stepmother insisted I had to have a "date." Instead I went to the ROTC ball. I wore a horrid Gunny Sax dress, and my date was in a Junior ROTC uniform. It was a horrible evening.
But I do love clothes, and have always dressed in things that are a bit off the beaten track.
I happen to think that something was lost when the waistcoat went out of style.
That said, lord, you people. I wear t-shirts and jeans, and that's it. A hoop skirt? the mind boggles.
Well, it was just one hoop, at the bottom, not a full production number.
For a moment I thought I walked into a fashionista blog. All this medical stuff has been fashion rants in disguise for all these years. How did I not know?
Here's my "poodle" skirt and crinolines.
http://www.youtube.com/watch?v=h3CHr6imxPk
@ Grant: Our late-at-night (daytime for you), "foodie" comments are always based in science.
On the off chance that I haven't done so already, I would like to mention that I really, really want a sword cane.
I love coming in late and discovering the end of the thread finishes with "I really, really want a sword cane".
LOL :)
@Grant
To quote the Scarlet Pimpernel, "a male's duty is to uphold the banner of beauty!"
And I second Narad's sentiment re: cane swords. Heck, I'd just accept walking sticks to come back in fashion.
@Narad and Todd W....I know where you can get them.... I loves me some swords - in sheathes or in canes (get your minds out of the gutter....). Yeah, I'm a Rennie.
Oh, and corsets, hoopskirts, bustles....all goood.....
@MI Dawn
Ex-Rennie, myself.
MI Dawn -- if you've ever worn a corset, you wouldn't say that.
(as for hoopskirts, don't ever try the Virginia Reel in one. Especially if your partner is a cavalry re-enactor and three sheets to the wind).
Eeek!
I'm away and look what I missed!
At any rate, my own fashionista-ism is much more mundane and non-anachronistic. Rather a blend of Trad and avant-garde minimalism. Some of which costs a small fortune and lots of which is black, grey or enticingly sombre shades of blue. No corsets , no Vivienne Westwood, I'm afraid.
-btw- a few family members have been/ are in the "business"- which had/has its perks.
I must be doing something right because I am often complimented by teenaged girls, twenty-something gay men and people older than me.
I went to a medical blog and "What Not To Wear" broke out...
Carry on. :-)
Very funny about the "What not To Wear" comment. We had a huge talk this morning about autism because someone on fb was claiming it was because of vaccination. I just dislike when people with little information spreading news like that.My other comments on this subject
Seoarcher, that is pretty nasty claiming that link was other comments when it was just blatant spam.
well, this *is* a departure from the late-night foodie chat :)
My one real 'fashion' item is a full-skirted black wool coat with gold, green & red embroidery & a sapphire-blue lining. I love the way it swirls!
It would look good with a cane!
Sword canes are in the "not to wear" category at the airport, but my martial arts cane passes muster with no problem. I'm not going to mention the orthopedic shoes.
@Shay...I own 3 and wear them...not daily though.
@ Shay:
@ MI Dawn:
I stand in awe of you both! That is wild!
Although I tend to be more subtle..I do own a black 2-piece evening frock which looks like something either an evil faery or Helena Bonham Carter** would wear: it has spaghetti straps, wafting tulle ribbons, black geometric beads on a plunging neckline and a hem that ranges from being at knee length on one side and ankle length on the other. I wear it with an bright blue and gold embroidered Chinese silk purse.
I would think a corset too much. Plus I have these things called "ribs".
** I look nothing like HBC.
MI Dawn -- after reading your earlier post, I realize that.
You're a better woman than I am, Gunga Din. Unless renaissance corsets are a lot more comfortable than mid-Victorian ones.
(They do promote an amazing superstructure, though).
@Shay..actually more Victorian, but I'm not into the tiny waist area, so for me, it's like a renfaire bodice...if unlacing isn't as good as....
Time to drag out the Kirsty MacColl song:
In These Shoes?!
@ Phoenix Woman:
That's funny.
Since I injured my foot - slamming on the brakes to avoid a careless driver- I don't wear the 90 or 100 mm heels as frequently as I did. BUT whenever I do, the ex is , uh, intrigued that I'm as tall as he is. Hasn't ask me to walk on him so far.
Wish I had found your blog years ago - as a mom of a child with autism and a person fighting breast cancer, I am overwhelmed by misinformation and "helpful" ... um ... advice. Actually, submerged in b.s. is a more accurate description. Your blog is refreshing!
Welcome aboard Kristan. I'm a (relatively) newbie here. I first found RI when I went on the internet to follow the Desiree Jennings *story* and her *vaccine-induced-dystonia*.
http://scienceblogs.com/insolence/2009/11/06/desiree-jennings-cured/
Denice Walter:
The movie Iron Sky has an interesting use of spike heels.
Welcome, Kristan. I understand what you mean. A decade ago I found what I mostly found was on the internet (and Usenet) was dreck.
@ Chris:
Unfortunately this machine refuses to play video. But I can imagine a few scenarios involving stilettos, scifi and n-zis.
At any rate, with 90-100 mm heels I am about 5'10" tall which makes it fairly easy to channel my inner valkyrie.
BUT I have NEVER walked on anyone..
well, not literally at least.
@ Kristan:
Hello and welcome aboard. We try to fight mis-information and make each other laugh when we can. Occasionally we talk about food.
Uh-oh, now I've gone and opened Pandora's box-
Denice, I checked out the movie DVD from the library. I am not keen on watching it through Amazon.
@ Chris:
Ohhhh, I thought it was a clip showing nefarious uses of shoes
I don't know if there is a clip, especially since it is near the climatic end of the movie as the Nazi's launch their attack on planet Earth after being on the far side of the moon for over sixty years. :-)
Shoes? Boots? Just so long as you don't go all Nancy Sinatra on us.
While everyone involved in the treatment of developemental disablities like autism try to sound so intelligent and create an aura of superiority for their endevor they leave the parent and child at a loss of influence and pride. It's as though only those treating the disability are allowed to have an ego and a say in their quality of life..
Nancy, what exactly are you saying?
I wouldn't call it recovery, but more adjustment.
Nancy, I am the parent. I have no idea what you are saying.
Nancy, I am not so sure that medical professionals are trying to sound superior or feed their egos. They often want what is most scientifically sensible and safest for the child. Why does ego need to be considered at all, unless the professionals are treating the PARENT?