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Autism's Biggest Scandal

Is it possible for public health authorities to re-examine their rigid assumptions about autism disorders and if so how long does it take?  Autism research funding has been absolutely dominated for decades by the assumption that autism is 100% genetic. The "its gotta be genetic" model of autism research funding was exposed over a decade ago by Teresa Binstock. At the same time public health authorities knew, or should have known, that autism is not 100% genetic; that environmental factors are involved.
The twin studies in fact pointed to the genetic environmental model of interaction as the best model for examining autism disorders in the 1990's, as the  following 1998 published abstract illustrates,  and yet purely genetic research continues to be funded at approximately 19 or 20 to 1 over environmentally focused autism research. This imbalance is a scandal.


Early environmental factors in autism Patricia M. Rodier1,*, Susan L. Hyman2
Article first published online: 7 DEC 1998

DOI: 10.1002/(SICI)1098-2779(1998)4:2<121::AID-MRDD9>3.0.CO;2-S

Abstract

Genetic and environmental influences are not mutually exclusive as causes of birth defects. Rather, both contribute to the etiology of many congenital anomalies. Recent results from studies of autism in twins argue that this is the case for autism spectrum disorders. Thus, even after the genetic causes of autism are known, it will be necessary to identify environmental factors that contribute to the expression of the symptoms. The first half of this review describes what has been learned from research on exogenous influences in autism, discussing studies of infections, inoculations, general pre- and perinatal factors, family histories, and drug and chemical exposures. The second discusses gene-environment interactions in other birth defects and the methods by which teratogens have been discovered. The role of known genetic syndromes in the etiology of autism is discussed with attention to whether their associations with the disorder are genetic or teratologic in nature. MRDD Research Reviews 1998;4:121–128. © 1998 Wiley-Liss, Inc.


This autism research imbalance in the face of certain knowledge that autism is not 100% genetic is the biggest autism scandal of all and points, at best,  to incompetent, rigid thinking by those who determine what autism research projects get which funding and which do not. At worst, this research imbalance has been part of  a deliberate attempt to direct attention away from all potential environmental causes of autism disorders whether those causes are found in vaccines, paints, plastic products including toys and jewelry or power plant emissions, all lucrative profit generating products and activities.

At least 2 decades of almost exclusive funding of genetic autism research has provided very very few tangible results. Environmental autism  research that might have uncovered causes and led to treatments and cures has not happened. It is time, it is long past time to listen to Teresa Binstock, researchers Patricia M. Rodier  and Susan L. Hyman  and others who cried out in the autism research wilderness and start seriously funding and exploring environment based autism research. It is time to listen to Dr. Irva Hertz-Picciotto of UC Davis M.I.N.D. who stated in 2009:

"Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones. We need to even out the funding."

It is time to even out the funding and start seriously researching environmental causes of autism disorders.

It is time to end autism's biggest scandal.

Garlic Naan

Garlic. If there's one ingredient I cannot live without, it's garlic. In fact, without really giving it a second thought, I almost always start savory recipes with sauteed garlic and onions. But for the recent Indian cooking class I hosted, we used garlic in a different way. For this Garlic Naan recipe, minced garlic is mixed with olive oil and herbs which was then brushed on freshly baked naan for additional flavor. Boy, was it good!...



An Indian meal is often accompanied with these soft, pillowy breads called naan. Believe it or not, naan bread is already lurking in your pantry. Considering that this specific bread calls for all purpose flour, salt, sugar (or honey), yeast, water and oil, there really isn't an excuse to not give this recipe a chance! The dough comes together rather easily. Once the dough has risen once, it's punched down and rolled into balls, then left to rest for a few more minutes. Each ball of dough is rolled out to a circular or free form shape then baked. After it's baked for a few minutes, the tops of the naan is brushed with garlic oil and baked once again. The garlic oil is a combination of minced garlic, olive oil and minced parsley. Delish!



If you're craving more carbs, check out YeastSpotting, where I submitted this recipe!



Garlic Naan

recipe adapted from The Fresh Loaf



3 cups flour

1 1/2 teaspoons salt

1 Tablespoon sugar or honey

1 packet yeast (or, if from bulk, 2 teaspoons yeast)

1 1/4 to 1 1/2 cups water, roughly at room temperature

2 tablespoons olive oil, vegetable oil, butter, or shortening



In the bowl of a stand mixer fitted with the paddle attachment, combine the yeast with the flour, salt, and sugar. (If you are using active dry yeast, follow the instructions on the packet to activate it before combining with the rest of the ingredients.) Add the olive oil and 1 1/4 cup water and stir together with a wooden spoon until you form a ball. Add water if needed to get all the flour mixed into the ball of dough.

Once all of the ingredients form a ball, remove the paddle attachment and replace with the dough hook attachment. Knead the dough at low speed for approximately 10 minutes. After kneading, place the ball of dough in a lightly oiled bowl and roll the dough inside the bowl around to coat. Cover with plastic wrap and set aside to rise until it doubles in size (roughly 1 1/2 hours - 2 hours).

When the doubled in size, punch the dough down to release some of the trapped gases and divide it into 8 pieces. Roll each piece into a ball, cover the balls with a damp kitchen towel, and let them rest for 20 minutes. This step allows the dough to relax so that it'll be easier to shape.

While the dough is resting, preheat the oven to 400 degrees. If you have a baking stone, put it in the oven to preheat as well. If you do not have a baking stone, turn a cookie sheet upside down and place it on the middle rack of the oven while you are preheating the oven. This will be the surface on which you bake your pitas.

After the dough has relaxed for 20 minutes, spread a light coating of flour on a work surface. Set a ball of dough on the floured surface. Flour the top of the dough, as well as your rolling pin or hands. Stretch and flatten the dough with your rolling pin/hands and roll out the dough to a 1/8 - 1/4 inch thickness. If the dough is too touch to stretch, cover it with the damp towel and let it rest 5 to 10 minutes before trying again.

Open the oven and place as many pitas as you can fit on the hot baking surface. Bake in the preheated oven for 5 minutes. Remove from the oven and brush with the garlic oil. Return to the oven and bake for another 2-3 minutes, enough to warm the garlic oil.

Is Autism Epidemic Denialism Starting to Crack?

Kev Leitch has reluctantly, very reluctantly, begun to acknowledge that maybe there are environmental factors involved in causing autism. For reasons that just aren't clear he calls his LBRB comment on a New Scientist article on autism increases  The autism ‘epidemic’ no more  even though the article does not provide any evidence to support the conclusion asserted in that title.  In the New Scientist article  Autism explosion half explained, half still a mystery Jim Giles reports that Dr. Peter Bearman and colleagues  at Columbia Unviersity conducted a three year study and found that only approximately half of the startling increases in autism diagnoses can be explained by diagnostic change, increased awareness and increased parental age.

Giles  references two primary sources to comment on the implications of the unexplained half of the autism increases, Dr. Tom Insel, director of the National Institute of Mental Health in Rockville, Maryland and  Roy Grinker, anthropologist at George Washington University. Dr. Tom Insel:

 But now a series of a studies have shown that diagnostic changes alone cannot account for the increase. They suggest that other causes, perhaps environmental factors, are also contributing to the rise in cases.

"These studies give me the feeling that there must be a true increase in the number of children affected," says Tom Insel, director of the National Institute of Mental Health in Rockville, Maryland.
...
Insel says that environmental factors are most likely to be behind the rise, although research to pin down which are to blame will take years.

For a contrary view Giles referred to Roy Grinker of George Washington University who trotted out his pet theory, the "stigma" theory,  to question the existence of a real increase in autism:




"Autism used to be highly stigmatised, in part because it was thought to be due to poor parenting. The removal of that stigma has made doctors and parents more willing to recognise the disease, which will have contributed to [some of] the extra cases, says Roy Grinker, an anthropologist at George Washington University in Washington DC.

This and other social causes, together with uncertainty in the number of cases that can be attributed to the factors already studied by Bearman, could account for much or all of the unexplained half, says Grinker."

The article does not explain what Professor Grinker meant by the "uncertainty" in the number of cases that can be attributed to the factors already studied by Bearman and his colleagues who studied these cases over a three year period and explained roughly half of the increase on diagnostic change and awareness. To my knowledge Grinker has not conducted a similar lengthy or extensive study to substantiate his "stigma" theory that autism is not really increasing. 

Kev Leitch, a Neurodiversity blogger,  who has long denied the existence of an autism epidemic grapples with the Bearman study implications with even more confusing and convoluted logic than Professor Grinker:

"So what can we take from Bearman’s work? In my opinion we can take the fact that as soon as the questions regarding non-environmental causes were actually looked at and studied, there were numerical values that could be applied to their contribution. There are other non-environmental causes which Bearman didn’t look at which would probably be found to contribute to the other half.

What about the alleged environmental causes? It would not surprise me in the least if it were found that there were some."

From that observation we then go back to the title of Leitch's comment "The Autism Epidemic No More" which makes absolutely no sense at all in light of the Bearman study, the New Scientist article or Leitch's own painful acknowledgement that environmental factors might be involved in explaining the increases in autism diagnoses.  Autism epidemic denialism is beginning to crack but it is a painful process for those, like Roy Grinker and Kev Leitch,  who have been loath to admit that environmental factors are involved in causing or triggering autism disorders. 

Perhaps Professor Grinker and Blogger Leitch will have less difficulty accepting the role of environmental factors in causing autism if and when the grotesque imbalance which favors genetic autism research over environmental autism research by 19 or 20  to 1 is eliminated in favor of more balanced distribution between genetics and environment.  Perhaps then they will see the Autism Epidemic that has been staring at us in recent years.

Potato & Pea Samosas

One thing I love about cooking is how a faux pas can still turn into something pretty great. While teaching an Indian cooking class, the samosa dough didn't make quite enough for the entire class so we improvised and made mini Potato & Pea Samosas instead... which really ended up looking like mini empanadas after they were filled. Regardless, they were quite delicious and easy to prepare. So there's no need to hit up your usual Indian restaurant for some samosas since you can make them at home!...

The star of this recipe is definitely the filling. A savory mixture of spices combined with onions, ginger and garlic coats tender pieces of potato with a few sweet peas tossed in. For some brightness, a splash of lemon juice and chopped fresh cilantro is added just before filling the dough.

The spices used include ground fennel, ground cumin, ground fenugreek, tumeric and red pepper flakes. Most likely, some of these spices may not be in your pantry. That's not to say they're difficult to find or even expensive to purchase. I purchase my spices in bulk at The Spice House, allowing me to get small amounts (usually 1 ounce). You can order spices online and have them shipped directly from their website. Another spice company I highly recommend is Penzey's.

As for the dough, this recipe is made in your food processor or can be done by hand in a large mixing bowl/stand mixer. Using flour, salt, yogurt, oil and water, this dough is easy to put together and uses ingredients you may already have on hand. Once made, they're easy to fill and fry up to a golden brown. I served these samosas with store bought mint chutney and a sweet & sour chutney, however feel free to make your own if you wish!

Potato & Pea Samosas
recipe adapted from Cook's Illustrated

Dough:
2 cups unbleached all purpose flour (10 ounces) + extra for work surface
1/2 teaspoon salt
2 tablespoons plain whole milk yogurt
3 tablespoons vegetable oil
1 tablespoon cold water

Pulse the flour and salt together in a food processor until combined, about 4 pulses. Drizzle teh yogurt and 3 tablespoons of oil over the flour mixture and process until the mixture resembles coarse cornmeal, about 5 seconds.

With the machine running, slowly add 4 tablespoons of the water through the feed tube untl the dough forms a ball. If the dough doesn't come together, add the remaining 2 tablespoons water, 1 tablespoon at a time, with the processor running, until a dough ball forms. The dough should feel very soft and malleable.

Transfer the dough to a floured work surface and knead by hand until it firms slightly, about 2 minutes. Wrap the dough in plastic wrap and let rest for at least 20 minutes, or refrigerate for up to 1 day.

Filling:
1 teaspoon ground fennel seeds
1 teaspoon ground cumin seeds
1/4 teaspoon ground fenugreek
1/4 teaspoon ground turmeric
1/8 teaspoon red pepper flakes
2 pounds russet potatoes (about 4 medium), peeled and cut into 1-inch chunks
salt
3 tablespoons vegetable oil
1 medium onion , minced
3 medium garlic cloves , minced or pressed through a garlic press (about 1 tablespoon)
1 1/2 teaspoons minced fresh ginger or grated fresh ginger
1/2 cup frozen peas, thawed
1/4 cup minced fresh cilantro leaves
juice from 1 lemon
Ground black pepper

Combine the spices in a small bowl and set aside. Cover the potatoes by 1 inch of water in a large saucepan and add 1 tablespoon salt. Bring to a boil, then reduce to a simmer and cook until the potatoes are tender and a fork can be slipped easily into the center, 12 to 15 minutes. Drain the potatoes and set aside to cool slightly.

Heat the oil in a 12-inch nonstick skillet over medium-high heat until shimmering. Add the spices and sauté until fragrant, about 10 seconds. Stir in the onion and 1 teaspoon salt and cook until softened, 5 to 7 minutes. Stir in the garlic and ginger and cook until fragrant, about 30 seconds. Stir in the cooled potatoes and cook until they begin to brown around the edges, 5 to 7 minutes. Stir in the peas to combine.

Transfer the mixture to a medium bowl, cover with plastic wrap, and refrigerate until completely cool, about 1 hour. Stir in the cilantro and lemon juice and season with salt and pepper to taste before using. (The filling can be refrigerated for up to 2 days.)

To Assemble:
Cut the dough into 12 equal pieces, and keep the pieces covered with a sheet of plastic wrap coated with vegetable oil spray to prevent them from drying out. Working with 1 piece of dough at a time, roll the dough into a 5-inch round using a rolling pin. Cut each dough round in half to form 24 half moons. Shape the samosas into a cone shape, fill, and seal the samosas, using 2 tablespoons of filling per samosa.

Adjust an oven rack to the middle position and heat the oven to 200 degrees. Line a baking sheet with several layers of paper towels and set aside. Heat 3 quarts oil in a large Dutch oven over medium-high heat to 375 degrees. Add 8 of the samosas and fry until golden brown and bubbly, 2 1/2 to 3 minutes, adjusting the heat as needed to maintain 375 degrees. Using a wire spider or slotted spoon, transfer the samosas to the prepared baking sheet and keep warm in the oven. Return the oil to 375 degrees and repeat with the remaining samosas in two batches. Serve.

Indian Favorites all this week!

It's been several months since I've hosted my usual culinary events for What's Cookin, Chicago due to my maternity hiatus. But now that I've gotten the hang of motherhood for the past three months, I'm ready to get back into the kitchen! This past weekend was quite a culinary adventure to say the least. I hosted two cooking classes with my group and had a delicious blast. One class I taught and hosted this past Saturday was on Indian Favorites, where folks got to learn how to make Indian cuisine more approachable at home. Everyone got hands-on in the kitchen while we cooked up quite a menu...

An intimidating cuisine to prepare is Indian cuisine. With such bold and exotic mixture of spices, the often long list of ingredients in recipes can seem daunting. But preparing Indian cuisine doesn't have to be tedious and scary... you can make wonderful Indian dishes with common everyday ingredients. Folks joined me in the kitchen as we tackled Indian cuisine and cooked up some favorite Indian dishes. Here's the menu we prepared, which I'll be featuring the recipes all this week so stay tuned!...


Mini Vegetable Samosas

Chicken Tikka Masala

Garlic Naan Bread

Curried Vegetables

Mango Lassi



Before we indulged in all the dishes we prepared, we had a great time in the kitchen. Here are some pics of us working away to prepare our Indian menu...

Brian S. v. Delgadillo: California Appeal Court Discusses Autism, Aspergers and the DSM5

In BRIAN S. v. DELGADILLO, the Court of Appeals of California, Sixth District, in a decision filed July 28, 2010, and  reported on line at LEAGLE, dismissed an appeal by a claimant with an Aspergers Disorder diagnosis  who had been denied services by a regional center. The appeal involved a number of  evidential and procedural issues and the weighing of contrary professional psychiatric opinions.  Amongst other findings by the court was the conclusion that "autism" as used, but not defined,  in the applicable statute did not include Aspergers Disorder. The court also concluded that "autism" as used clinically refers to the diagnosis of "Autistic Disorder" in the DSM-IV-TR  but not to Aspergers Disorder.

" Finally, our interpretation of the statutory language in section 4512, subdivision (a), is consistent with that of the trial court, the ALJ, the Regional Center, and the Department of Developmental Services (DDS). We understand the concerns expressed by Claimant and the amici curiae. However, our review is defined by the record of the proceedings before the ALJ and the superior court. This record does not support a conclusion that the term autism in section 4512, subdivision (a), must encompass a spectrum of developmental disorders that includes Asperger's Disorder, nor does the pertinent legislative history of the statute compel such an interpretation. Questions concerning whether the language of the statute should be amended or expanded to reflect changing diagnostic practices, or to include a broader array of developmental disorders, should be addressed to the Legislature. (Richardson v. City of San Diego (1961) 193 Cal.App.2d 648, 650-651; Strickland v. Foster (1985) 165 Cal.App.3d 114, 119.)" ( Bold empahsis added - HLD)

The court noted that the statute did not define the term "autism" and referred to the DSM as the authoritative clinical guide in order to determine whether the "autism" in the DSM included Aspergers Disorder. After reviewing the record and the testimony of the professionals in the record the Court concluded that autism in the DSM currently refers to Autistic Disorder and does not include Aspergers Disorder:


"Claimant argues that these publications reflect recent trends showing that the DDS, through its regional center system, provides services to individuals with Autistic Spectrum Disorder, including those with Asperger's Disorder, on a case-by-case basis, provided that the individual is substantially disabled by the condition, as that term is defined in section 4512, subdivision (l). The amici curiae also rely on these studies and guidelines in pressing their claim that the current use of the term autism in the mental health community describes a range of disorders known as Autistic Spectrum Disorder, which includes both Autistic Disorder and Asperger's Disorder.

It appears from these materials that increasing numbers of people seeking services in the regional center system are presenting with various forms of Autistic Spectrum Disorder, as described in the Best Practice Guidelines, and that there is an emerging need to clarify the eligibility requirements under the statute. However, while claimant and the amici curiae have impressed upon us the importance of these issues, we must reject their arguments, for several reasons.

First, contrary to what the amici curiae argue, the materials before us by no means reflect a settled consensus in the scientific community regarding the use of the term Autistic Spectrum Disorder. We note that the authors of the Best Practice Guidelines point out that Autistic Spectrum Disorder, as used in the Guidelines, is a descriptive term, and is not meant to be a diagnosis. The authors defer to the authority of the DSM-IV-TR as the current standard, which classifies Autistic Disorder and Asperger's Disorder as two separate disorders. The amici contend that the newest edition of the DSM will reject any distinction between the two disorders and has formally recognized autism as a spectrum disorder. However, this new edition of the DSM (DSM-V) is in the preliminary draft stages only and will not be published in final form until 2013. 

Furthermore, even among those professionals who advocate using the descriptive term Autistic Spectrum Disorder, there is disagreement as to which pervasive developmental disorders should be included in the term. (See Caseload Update, p. 6, ["[b]oth nationally and within California, there is not total agreement on which diagnoses should be included as part of the spectrum."].) And there is controversy around the spectrum concept itself. (See Best Practice Guidelines, p. 147 ["the assumption that all of the conditions on the so-called `spectrum' represent some variant of autism remains a hypothesis and is not an established fact."].) In sum, resolution of what appears to be an unsettled debate in the psychiatric community as to whether autism should be re-classified as a broader Autistic Spectrum Disorder involves clinical, rather than legal, determinations.

Second, Claimant's argument that the DDS has endorsed a definition of autism to mean Autistic Spectrum Disorder, thus including Asperger's Disorder, is directly contradicted by the DDS itself, which has filed a brief in this appeal in response to our granting of Claimant's request for judicial notice. The DDS has clarified that it has "not issued any formal interpretations of `autism' under section 4512, subdivision (a)." The Best Practice Guidelines itself cautions that it offers only recommendations, and "cannot be interpreted as policy or regulation." The DDS, and the authors of the Best Practice Guidelines, continue to accept the definitions in the DSM-IV-TR as current authority. The Caseload Update, prepared by the DDS, equates autism with Autistic Disorder and does not include in its data "people with other disorders on the spectrum," such as Asperger's Disorder. It provides that "[f]or the purpose of this report, the term `autism' refers only to the condition characterized by the [DDS] as `autistic disorder' [as defined in the DSM-IV-TR]." The position of the DDS is clearly stated in its brief: "`[A]utism' under the Lanterman Act should be interpreted to mean `Autistic Disorder' as defined under the DSM-IV-TR, and accordingly should not include Asperger's."[ 6 ]"

The court while acknowledging the disabling challenges faced by many with Aspergers Disorder also offered the opinion that  the deficits afflicting those with Autistic Disorder are more severe:

"It is argued that individuals who have been diagnosed with Autistic Disorder and those with Asperger's Disorder may be equally disabled and similarly in need of services. Thus, there is no reasonable basis to find some individuals eligible for services and to exclude others, except on a case-by-case assessment of their level of disability. We understand, and are sympathetic with, the argument that services should be available to all individuals with substantial disabilities. However, the Legislature has specifically limited the categories eligible for services under the Lanterman Act. And Autistic Disorder and Asperger's Disorder, although they have characteristics in common, are presently distinguished by the diagnostic criteria set forth in the DSM-IV-TR. With Austistic Disorder there are more severe communication deficits not found in people with Asperger's Disorder. With Autistic Disorder diagnostic symptoms are obvious in early years, and may include mental retardation. Those with Asperger's Disorder exhibit no cognitive or language delays. These differences describe a greater severity of deficits in people with Autistic Disorder and provide a reasonable basis for the regional center system serving that population. And, as the record shows, people with Asperger's Disorder are served through the mental health system."
As noted above, the court noted some important distinctions between Autistic Disorder and Aspergers Disorder including diagnostic differences related to severe communication deficits in persons with Aspergers Disorder which are not present in Aspergers, the fact that Autistic Disorder symptoms are obvious in early years, the fact that mental retardation may be present in Autistic Disorder  and the fact that those with Aspergers Disorder do not show cognitive or language delays.

The California appeal court in this case expressly stated that persons with Aspergers can also suffer from deficits but they are different in kind and severity from those which accompany Autistic Disorder. I have made this observation many times on this site.  Given that the DSM is the primary clinical tool in North America for assisting in the diagnosis of what are described as mental disorders which impact on the functioning abilities of those with various DSM diagnoses why on earth are the DSM5 committees combining the two together into one New Autism Spectrum Disorder? How does this obscuring of important differences in functioning  areas and severity levels in the authoritative diagnostic manual  help persons with either disorder?

TIME and the Autism Crisis

I have often written of the major mainstream media institutions  glossing over the harsher realities of autism disorders as experienced by those with severe Autistic Disorder.

One of my friends, a determined autism dad/advocate  from British Columbia, re-posted on Facebook an exception to this tendency and I thought it appropriate to mention again this realistic coverage of the challenges faced by a severely autistic adult. 

In  Growing Old With Autism TIME  published an article by Karl Taro Greenfeld about his brother  Noah Greenfeld, 42 when the article was originally published, in May 2009:

"Noah, my younger brother, does not talk. Nor can he dress himself, prepare a meal for himself or wipe himself. He is a 42-year-old man, balding, gaunt, angry and, literally, crazy. And having spent 15 years at the Fairview Developmental Center in Costa Mesa, Calif., a state facility, Noah has picked up the con's trick of lashing out before anyone could take a shot at him.

Noah's autism has been marked by "three identified high priority maladaptive behaviors that interfere with his adaptive programming. These include banging his head against solid surfaces, pinching himself and grabbing others," according to his 2004 California Department of Developmental Services individual program plan (IPP). Remarkably, that clinical language actually portrays Noah more favorably than the impression one would get from a face-to-face meeting. (See six tips for traveling with an autistic child.)

Despite the successful marketing of the affliction by activists and interest groups, autism is not a childhood condition. It is nondegenerative and nonterminal: the boys and girls grow up. For all the interventions and therapies and the restrictive diets and innovative treatments, the majority of very low-functioning autistics like Noah will require intensive support throughout their lives. If recent estimates of prevalence by the Centers for Disease Control and Prevention are accurate, then 1 in 150 of today's children is autistic. That means we are in for a vast number of adult autistics — most better adjusted than Noah, some as bad off — who will be a burden to parents, siblings and, eventually, society.

We are largely unprepared to deal with this crisis.  ..."

There are some who can flippantly ask ... autism crisis ... what crisis? Karl Taro Greenfeld is not one of them.  Nor am I as the father of a 14 year old  boy severely affected by his Autistic Disorder. In our house the Autism Crisis is very real and never out of mind.

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