11/30/2010

The New Mito-Autism Study in JAMA

A new study was released today in JAMA which looked at, in part, mitochondrial DNA overreplication in a sample of ten autistic children between the ages of 2 and 5 and ten matched controls.  Giulivi et al. found that 5 of the 10 autistic children and 2 of the control children had mitchondrial DNA overreplication.


In a previous post here, the question was raised of how autism is diagnosed in the samples being studied. This new study allows an opportunity to look at how carefully the sample is selected and controls matched to the sample.


For example, "The recruited children were aged 2 to 5 years and resided with a biological parent in a well-defined catchment area of more than 22 counties in northern California and parts of Los Angeles County, California." The controls were "sampled from birth files with frequency matching to the projected distribution of sex, age, and geographic area among cases of autism. Environmental, lifestyle, reproductive, maternal medical, and detailed demographic information was collected through an extensive telephone interview with the primary caregiver. Participants’ mothers classified parents into race and ethnicity categories identical to those used in the US Census and these same categories were used to define child race and ethnicity."


What about the autism diagnosis and making sure the recruited children really were on the spectrum and what was known about their functional levels? The authors stipulate precisely the means through which diagnoses were made and the scorings used: "Diagnoses were confirmed through clinical examinations using the Autism Diagnostic Inventory-Revised (ADI-R)9 and the Autism Diagnostic Observation Schedule (ADOS)." The authors "selected 10 individuals who met criteria for full syndrome autism on both the ADI-R and ADOS and 10 typically developing control children." The authors even took into account the diversity of the spectrum: "Because ASD represents a fairly diverse phenotype, we studied children meeting criteria for full syndrome autism and neurotypically developing children (controls) without a clinical diagnosis of full syndrome autism, ASD, or developmental delays." The authors continue, "We also attempted to achieve comparable age, sex, and race/ethnicity across groups to minimize confounding sociodemographic factors that may be surrogates for genetic, epigenetic, or cultural background." In other words, the researchers took care to make the best selection they could for the controls so that their results would be as accurate as possible.


In part, the study revealed that "Defective or abnormal lymphocytic mitochondria in children with autism were observed in this exploratory study as determined by the following parameters:
(1) low PDHC activity accompanied by low lactate-to-pyruvate ratios,
(2) impaired complex I alone or in combination with other complexes (mainly complex V), 
(3) enhanced mitochondrial rate of hydrogen peroxide production, and
(4) mtDNA overreplication and/or deletions."




The authors (despite focus on press releases that don't always present an accurate portrait of a study) were careful to note the limitations of the study, as well: small sample size, potential of Type I errors, "cases in this substudy were somewhat higher functioning than those from the original study, lessening the difference with controls," "the differences observed between our cases and controls could represent confounding effects due to possible associations between mitochondrial dysfunction and race, which also differed by case-control status," and "none of the children in this study had been previously diagnosed with a genetic syndrome or had any indications of genetic syndromes as determined by developmental pediatricians at the Medical Investigations of Neurodevelopmental Disorders Institute."


Perhaps the most relevant limitation that the study authors themselves note is this: "inferences about a cause and effect association between mitochondrial dysfunction and typical autism cannot be made in a cross-sectional study. Several factors influence expression of mitochondrial respiratory insufficiencies in both the affected and general populations (ie, nuclear genetic
backgrounds,39 mtDNA heteroplasmy in different tissues,40 different energy thresholds within a given tissue or organ,41 and environmental factors42)."


People in the autism community have rejected studies with hundreds of thousands of children, crying foul. They have embraced case series with a dozen kids as proof of the MMR causing autism, all while insisting that the study doesn't say that at all. They have gone gaga over monkey studies (how many 14, 13, 12?). People in the autism community go beyond what the researchers themselves note are limitations in the study, ignore the caution, ignore the calls for more research ("More research is needed to understand the molecular causes of the mitochondrial dysfunction and how this and other neurometabolic defects may contribute to autism or related phenotypes.") and insist that answers are at hand.


We must be cautious. This is not the magic bullet. Half the sample did not have "mtDNA overreplication." Two of the controls did. Perhaps like epilepsy this is more likely to occur in the autistic population. With a sample of 10 and a control of 10, it would be inexcusable to speculate beyond this study and extrapolate its findings to all autistic individuals. Much more work remains to be done. The best that we can do, as members of this community, is to work to get the facts correct and not speculate wildly. We should recognize our limitations in understanding the details of the study, and we should never, ever leap to conclusions based upon a press release and an abstract.




Cecilia Giulivi; Yi-Fan Zhang; Alicja Omanska-Klusek; Catherine Ross-Inta; Sarah Wong; Irva Hertz-Picciotto; Flora Tassone; Isaac N. Pessah
Mitochondrial Dysfunction in Autism
JAMA. 2010;304(21):2389-2396.

The Tale of the Broken Smacker



There were indicators along the way that signaled Rosie's spectrum status. No so-big. No patty-cake. A refusal to say sorry. Peekaboo-fuggedabout it! But the one thing that bounced us all out of our complacency was when she was three and and the kisses went away and the lack of eye contact became overt. In other words, it was the broken smacker that did it for us.

You can see that the smacker remains broken despite our best attempts to help her learn to pucker. What we get for kisses are passive lip brushes. If we get that at all. Rosie's huge on hugs and when she gives one, it really is the present she calls it. She doesn't just give them to anyone, and a lip brush is a total treat.

The bright boy is like that; very hands off, not big on touching, but instead of a broken smacker, his kisses (only on the cheek and only I get them) are full-force, knock-you-on-your-ass kisses that we used to call whoa-baby kisses. It's why the loss of those smacks that Rosie used to give hit me (and my mother) like a ton of bricks to the forehead the summer the smacker went away.


Perhaps it's texture, perhaps it's that making that shape with her lips has become an overt, intentional one she cannot make herself make, but the times Rosie's smacker works are few and far between, and working on it only makes her more resistant to trying. She doesn't want that close of contact with anyone but me, her dad, and her grandma, and hugs for other people have always been given at direction. She is simultaneously a huggy, cuddly child with a few select people and highly resistant to touch by the rest of the world, just like Bobby was and still is, today.

Will the Rosie ever fix her smacker? I don't know. She's cute as all get-out practicing the pucker, though, even if she can't quite get it. And I feel special knowing that I am one of the few who get her lip brushes and occasional out and out smacks. I prize them, each and every one. Plus, I've almost got the boy and the amount of pressure he applies to my morning and nightly on-the-cheek-kisses worked out so that I don't get whiplash, so I reckon, given time, Rosie will get her smacker fixed, too.



*It should be noted that Lil has no pucker problems or hug issues. She tends to go the opposite, actually, and is overly physically affectionate, a reminder that autism isn't identical, even in siblings, and it's the lack of a middle ground (that we decide is normal) that is an indicator that the brain processes things differently.

11/29/2010

Monday Migraines: We Don't Do Well With Changes

Some days, the head, the belly, and the rest of the package don't align. I'm just saying, that's all. I used to hate the idea that stressors could contribute to migraines, that if only I made better appraisals I wouldn't suffer so many migraines. I felt it a personal flaw, a weakness.

I'm older, though, and either gained in wisdom or simply gotten more tired, but I no longer blame my appraisals of stressors for migraines occurring. No doubt, many of my migraines occur because situations demand more than my body can or wants to deliver, but that isn't weakness. I firmly believe I can face the challenges ahead, even when I don't want to face them. My body and my brain don't always agree with my mind's assessment, though.

My kids aren't the only ones who don't deal well with changes. Whether I was always as bad or not, I'd rather not admit. :-) Let's just say that five days off from school was not an easy transition for any of us. Rosie and I struggled with too many empty hours without clearly defined tasks and start and finish times.  We don't do at all well with empty times. And if you know me, the more full my schedule, the happier I am (as long as these things occur inside my comfort zone!).

Last night and this morning were really tough on Rosie in particular, and Lily to a lesser degree. People did not want to go to bed. People did not want to get up, and one little one in particular did not want to go to school and get homework (Rosie). After we said she could wear her "A Monster Ate My Homework" tee, she was much improved in mood, though still not inclined to go to sleep. After nine at night, my patience for 'I'm lonely, I can't sleep issues' decreases, suffice it to say. After cuddles at 9:30 and a strong admonition that her little bum best not be seen outside her room again for the night, Rosie finally went to bed.

The morning rituals went about as expected, with itty-bitty meltdowns interspersed through the morning, and that was just me (I kid; it was mostly Rosie), and the girls got off to school on time with their dad dropping them off while I got ready for work, my migraine already in full swing. I'm just glad it's not the horrendous in-bed, non-functional one I had a few weeks ago. Instead, it's the typical hug-the-commode, hope-the-classes-go-by-fast kind (and make the most of the breaks in between).

It's an expected migraine, in other words, brought  about by the change in schedule and demands. It's my Monday migraine. Fridays when the schedule shifts again, I'll almost certainly have one, too: my Friday migraine. Like clockwork, they signal to me that I, too, do not cope with change well, that my body, brain, and mind seek constancy, thrive on it, demand it. The migraines remind me that constancy is impossible: life, though rhythmic, can not be chained to a clock. We must adapt and learn to flow.

The irony that my autistic children with their need for constancy force me to loosen my need for constancy and be fully immersed in the moment is never lost on me. I wish, though, that I could deal with this looseness, this lack of constancy, with something other than migraines. Hah, perhaps that's my body's way of saying, here you go, here's your constancy: Monday and Friday migraines at your service!

11/28/2010

Wherein Lies Value? Perspective Is Everything

Over at the Autism Blogs Directory, we have over 400 blogs and websites representing a diversity of views and opinions. We have parents and autistic individuals who are firmly convinced that vaccines cause autism. We have staunchly pro-science bloggers. We have folks who believe in god, that everything happens for a reason, and that autistic individuals are sent by god to teach us; we also have atheists, agnostics, and lukewarm Baptists, I'm sure. We have parents who are deep into biomed, parents who medicate, parents who don't, and all the ranges in between. We have parents who appear to be mired in darker places and parents who choose to focus on the more positive aspects of their lives.


In my own personal pursuits and my graduate course work in psychology, I have had one overarching interest: adaptive coping, which has twinned out to two domains: what traits predict adaptive coping and well-being in chronic pain patients and what traits predict adaptive coping for families dealing with disabilities and adversity. 


I try to read as many of the blogs on the directory as possible, to offer comments as time permits, and to be supportive where I can. That often means I read folks with whom I may differ significantly on perspective. I think that's important; if we only read people we agree with, we remove the chance to learn and grow, to find new tools with which to connect with the world and those we interact with. I don't do this to go around and feel like I'm superior to others, but to chart the journeys we are all on and how our paths differ. 


Sometimes the blogs I read shatter my heart at the things some families endure; I don't pray, but I take the time to wish that if the accidental cosmos cares, if it is possible, that my concern and my caring for these families will ease their journey.  I am humbled by the difficult terrain far too many families must traverse. Often times, though, even as my heart shatters for their losses, I am amazed by the grace they demonstrate as they walk the rocky path, that they continue to move forward. Reading their blogs becomes a testament of my respect for them, my desire to honor them by walking a ways with them.


Sometimes, though, my heart shatters for other reasons. When I see parents who are on difficult journeys who are coping maladaptively and making their journeys harder than they need to be. And I wish that I could ease that. Reading their blogs remind me that while perspective is a choice, most people are not aware that it is. I walk alongside their journeys, hurting for them and wishing that virtual hugs and support would be enough to break that pattern of maladaptive coping.


Other times, I run across blogs where perhaps it's just a temporary blip, a need to vent, or even a differing in meaning of words, and I take the time to comment in more detail.


When my oldest was five and he'd already been through diagnoses of ODD, ADHD, bipolar, and PDD (none of which were given with an actual assessment or battery of tests but rather proclaimed on high by psychiatrists after short appointments where they simply talked to me and watched the boy climb all over me and pound on me), Rick and I were told he'd never live independently and the best we could hope for was a group home. After two years of fighting for a real diagnosis and meaningful help, we got ritalin, clonodine, and zoloft, and later the zoloft replaced with risperdal. It took another three years to get good assessments done and a thorough evaluation and the autism diagnosis firmly in place and accepted.  I suppose one could say they were grim times, to borrow an adjective from a blogger I read yesterday. My son's stroke at age nine moved into terrifying territory, though, and we became unfailingly grateful to have him, period, so that our perspective permanently altered.


I don't know what it is to have a "normal' child with no issues, so I cannot speak to how that impacts such children to be raised with siblings with disabilities, but I think, based on my experience as a sister to a brother with mental health issues and disabilities caused by a stroke, that this is a matter of perspective again.


I pondered the idea of perspective, of value, of the future yesterday, thinking of all the posts I've read in the last two years that have saddened me, of the difference that perspective could make, and I responded on that blog thusly:


I have three on the spectrum; over the years and the ups and downs, I have learned that the future is not writ; it does not have to be grim, regardless of the level of independence and functioning achieved. The fact that they have each other is a source of hope because they will never be alone and will always accept each other wholly and completely.

My bright boy turns 21 next month. No, he's not going to live on his own independently; he's going to live with his dad and me indefinitely, but this does not have to be a grim outcome. No, he's not going to work, most likely, but this, too, is not a grim outcome. He volunteers one morning a week at the animal shelter, and he attends the day center for the disabled three days a week. It, too, is not grim. He has a good life, one lived at his capability, one where he is loved and cared for and able to contribute to the degree he is possible. And he is close to his sisters, who understand him completely because they are also on the spectrum but without the accompanying intellectual disability. Perspective matters. If all we value is the idea of independence, then anything short of that can be seen as grim; however, normal functioning doesn't guarantee happy endings. One of my brothers, who was bright and had every opportunity, every chance at a successful life, threw it all away with bad life style choices culminating in a stroke and disability (some chemicals really don't mix). 

I don't know what the future holds for my three. Will it be easy? No, probably not (who gets an easy life?), but they have each other, and they have us. And it is not grim, no matter what the future holds because we value different things: are they happy, are they of service? :-) 

The future is unwrit and precarious for us all, no matter whether we are on the spectrum or not, and how we see the future is up to us.


...

I know intimately the lump that exists in one's throat when contemplating the future for our children. I endured the heartbreak of getting guardianship of my son when he turned 18 and we admitted that he would not achieve all that parents hope for their children. I suffered heartache as my students and my boy's ages overlapped, until enough time elapsed and he became older than my freshman, and it became a pain lived with, worn in, comfortable, the way things were. I will not deny that parenting special needs children can be heartbreaking. It is. It hurts so severely, so deeply, that the pain is physical, overt, and overwhelming. That is a reality that should not be dismissed, swept under the carpet, or ignored.

It should not be where all the focus is, though, because it is not even half the story. Because of that ache, that pain, I have known transcendent joys. My children shine brightly and I am overwhelmed by the love that pulses in tandem with my heart beat that I have for them. I feel fiercely, intensely, completely, and I do so because of them.

My son fought his way back from hemiplegia, from loss of speech, from loss of bladder and bowel control. He fought his way back while my husband and I and his dedicated speech, PT, and OT therapists worked with him to regain the ability to talk, walk, write, and all the other skills that had been so hardwon in the first place, all while we waited in worry that the blood clotting disorder that appeared to have caused the stroke in the first place lurked in the shadows, waiting to strike again. It lurks there, still, an ever-present reality that in the blink of an eye, lives change forever. And so I cannot, will not, allow it the ultimate victory over us by letting it take our perspective of the present and the future away from us. 

The stroke and the blood clotting disorder changed our perspective permanently and made us rethink wherein the value of a life lays. If, if, if one can die suddenly and without warning, where does one focus attention and perspective? How do you parent such a child? We decided several things over those initial months. One: he would not be subjected to a school system ill-equipped to keep him safe. We would not let him be bullied or harmed, nor let his psyche suffer from such abuses. Two: if our time with him could be so short, then we would work at giving him a life where he knew he was valued, where all eyes on him would reflect back that innate, inherent value. And three: we would teach him that meaning exists, that a life well lived is to be found in being of service, however and wherever that service might lay.

Perspective is, indeed, everything. As time passed (it's been eleven and a half years since his stroke), fear loosened its grip; we got used to this potentiality living over our shoulders, especially since his blood clotting disorder was inherited from his father. I got used to it, this twin fear for both husband and son, breathed it in and out, still do, each day, that it no longer robs me of breath. I can write with absolute conviction that the future is not writ, not for them, not for me, not for any of us. If the future can be taken so abruptly, changed so unequivocally, then our perspective now is the key, is what matters more, what determines how we handle the present, how we prepare ourselves for the future, whatever it may bring.

I accept the heartache that comes with loving others. I choose to breathe through it so that I can focus on the joy, the blessings, that come from having walked through the darkest nights and on into the dawn, knowing that I will walk through darker nights still.

11/26/2010

Moon and Boredom





I get bored without deadlines and work and lots of got-to-be-done stuff. Just saying.

Are All "Truths" Equally Valid? Comparing the AoAers to Kesey's Cuckoo

It seems a silly question to ask, given the self-evident answer: we know that all beliefs and opinions are not equally valid. Obviously, it's important to acknowledge that the person who believe something believes it to be true, but it doesn't mean it is.


The reason I raise this question is that most of us in the skeptical community patently reject the assumption that all "truths" are equally valid. What matters is evidence. Where there is no clear answer, rather than assuming a position of absolutism regarding "truth," we tend to adopt a "wait and see" approach or an honest "I don't know" approach.


This is not the case in most areas. Truthiness is often more important than truth.


Chantal Sicile-Kira has a Thanksgiving post up at Huffington Post that troubles me. The part, I suppose, that bothers me most is this idea of truths, as if everyone's version of reality is equally valid and true. She writes, "The autism community has it's differing opinions, because all of our perceptions and experiences are a part of the mystery that is autism: we share a similar label but our personal stories, perceptions, beliefs, and truths are different. And this needs to be respected" (punctuation intact). Had she left it at perception and beliefs being different and needing to be respected, I believe I could endorse that. In order to communicate with others on similar journeys but with radically differing perceptions, we'll have to respect that those perceptions are different or no communication can occur. 


It's this idea of truths, though, that pricks at me. Truth. I've used this line from Kesey's One Flew Over the Cuckoo's Nest several times over the last few months as I work my way through to understanding other people's realities: "It's still hard for me to have a clear mind thinking on it. But it’s the truth even if it didn't happen."


True. It's true to me if I believe it. This suggests that there is a wide gap between how scientifically and empirically based people would use the concept of truth and how the general public uses it. Indeed, there's a wide gap in the actual definitions of truth and how Sicile-Kira uses it here, and in how Kesey used it in his book. Theirs is a personal truth, not an empirical, grounded-in-objective reality truth. It is a subjective truth, one that can walk at complete odds with anyone else's subjective experiences. 
truth
"1. the true or actual state of a matter: He tried to find out the truth.
2. conformity with fact or reality; verity: the truth of a statement.
3. a verified or indisputable fact, proposition, principle, or the like: mathematical truths.
4. the state or character of being true.
5. actuality or actual existence.
6. an obvious or accepted fact; truism; platitude.
7. honesty; integrity; truthfulness.
8. ( often initial capital letter ) ideal or fundamental reality apart from and transcending perceived experience: the basic truths of life.
9. agreement with a standard or original.
10. accuracy, as of position or adjustment.
11.Archaic . fidelity or constancy.—Idiom
12. in truth, in reality; in fact; actually: In truth, moral decay hastened the decline of the Roman Empire."

The saying "and the truth shall set you free" decries this personal, subjective and independent-of-reality truth. Kesey's narrator, Chief Bromden, relates his truth, his subjective, hallucinatory and often delusional experiences, and throughout the story moves back towards sanity and reality by backing away from the self-imposed isolation of a separate reality; his quest towards liberation and reality setting him ultimately free from the self-imposed silence and fog and reconnecting him with the wider world. Sure, it's an ambiguous ending in that he leaves the institution and strikes out, his future and future truths unknown. At the very least, though, the reader has a sense that there will not be a return to his fog or self-imposed exile. He will see the world from a more objective perspective.

Not all people who create a reality distinct and separate from what mainstream society recognizes as close-to-objective reality will retreat from the fog, though, and it seems clear as time passes and more studies are done that show no link between vaccines and autism, that some parents and indeed, autistic individuals, as well, are retreating deeper into the fog. They, too, see the world in similar terms as Chief Bromden: there is a Combine out there attempting to coerce and force a rigidity of behavior and beliefs; for these individuals, it is not the institutional setting enforcing it, but the combined machinations of the pharmaceutical industry and the governmental complex working through the use of vaccinations to at best, damage an entire generation of youth, and at worst, engage in a eugenics program. It's their "truth" even if it really isn't happening.

The question becomes, then, for those who see this as foggy behavior, how do we interact with people divorced from objective reality? Do their beliefs deserve respect? I think not. Do the individuals themselves deserve respect? I think that depends on how we're using the term respect. They deserve compassion, certainly. But I don't think we need to elevate distorted thinking and conspiracy theories as equally valid to scientific and empirically validated truths.

11/25/2010

Strides and Gratitude




On this day, I am thankful.

I am thankful that my children are healthy and happy, that they are making progress.

I am thankful that I have a husband who cares enough that when I commented this afternoon that my feet were cold took the time to get up and cover them with a blanket.

I am thankful that my husband and I have jobs and, even better, that we find them immensely satisfying.

I am thankful that my parents are right next door and doing well (and that Mom is feeling better).

I am thankful for Kathleen, who's made my life richer and better for her unfailing presence in it (even if she still hasn't shared a picture of herself in the 18 months we've been constant email buddies!).

I am grateful for all the wonderful folks I've gotten to know in the autism and skeptic communities who have given me lots to read and often delightful exchanges. And to Matt at Dude, I'm an Aspie, thank you for making a cartoon me and having me to Thanksgiving dinner! :-)

Happy Turkey Day! (or whatever you're eating today!)











11/24/2010

AoA: Autism is NOT Mercury Poisoning

I have, believe it or not, a relatively high threshold for differences of opinions. Really. Quit laughing. I do. I don't think folks have to agree with me on everything. I respect my friends who have faith; I don't care what one's politics are, and I'll even put on my gameface when it comes to sports, although nothing holds a candle to sumo. I have friends who are heavy into the woo, who believe in ghosts, who think homeopathy and reiki are real. I wouldn't dream of berating them or giving them hell on any of this stuff. Really. I told you to quit laughing.


Look, I'm smart enough to know myself well enough to know to never, ever facebook friend certain people who are favorite fodder for blog posts (Mercola, Lanza, Ullman, Gordon, Wakefield, etc), and I even take a minute before accepting friendship offers on facebook because if they are into the woo and I friend them, sigh, I won't go snarky on them EVER. I'll be endlessly loyal even though I don't really know them in the real world and may not even interact with them much on facebook. I know, it's weird, but I take facebook friending seriously.  Sometimes, I think some folks are testing me, and upon occasion, I'm even led to wonder if there is a god with a delightful sense of humor when I see what some of the folks who offer friendship to me on facebook are into.


I hate it when I have to comment on AoA. I really do. I want to ignore them because, well, it's so hard to find something positive to say about them way too much of the time. Heck, I don't even look at them most days now; that way I don't feel like I have to respond to them. But come on, there's a level of outright flat out ignorance that I find beyond offensive. I get that not everyone's gonna dig into databases like I will. I get that. I do. I get that there are a whole lot of people a lot smarter than me out there, too, who know boatloads more than I do. I get that we generally do the best we can and that when we know better, we do better. What I cannot tolerate, what makes me pretty heated, is willful ignorance. Especially willful ignorance like Stagliano displays today at AoA:



How many times and in how many ways does it have to be stated, shown, proven that autism looks absolutely nothing like mercury poisoning? How impossibly ignorant can a person be? It's shameful. 

The question of whether autism and mercury poisoning look the same has been examined and answered. The answer is no. I know, I know, there are technicolor websites out there by folks who've created elaborate tables that demonstrate the similarities between autism, Alzheimer's, and mercury poisoning. 

Nelson and Bauman (2003) look at one of these tables and the allegations that autism is mercury poisoning caused by the thimerosal in pediatric vaccines.

Mercury poisoning:


"In mercury poisoning, the characteristic motor findings are ataxia and dysarthria (Table 1).5,6 These signs, along with tremor, muscle pains, and weakness, are noted on relatively high-dose exposure, acute or chronic."


Autism:


"In contrast, in autism, the only common motor manifestations are repetitive behaviors (stereotypies) such as flapping, circling, or rocking. Persons with Asperger syndrome may be clumsy, and hypotonia has been noted in some infants with autism; the frequency of clumsiness and hypotonia in autism spectrum disorders is not established."


Mercury poisoning:


"The most characteristic sensory finding of mercury poisoning is a highly specific bilateral constriction of visual fields. With lesser exposure there may be compromise of contrast sensitivity. In addition, there may be paresthesias or, in infants, erythema and pain in hands and feet because of peripheral neuropathy." (endnotes removed for clarity)


Autism:


"In autism, decreased responsiveness to pain is sometimes observed along with hypersensitivity to other sensory stimuli, including hyperacusis. The “sensory defensiveness” of autism seems to reflect altered sensory processing within the brain rather than peripheral nerve involvement."




The CDC also offers information regarding mercury poisoning symptoms:


"Repeated or continuous exposure to elemental mercury can result in accumulation of mercury in the body and permanent damage to the nervous system and kidneys. Classic symptoms of poisoning include neuropsychiatric effects, renal impairment, and oropharyngeal inflammation. The neuropsychiatric effects include tremor, anxiety, emotional lability, forgetfulness, insomnia, anorexia, erethism (abnormal irritation, sensitivity, or excitement), fatigue, and cognitive and motor dysfunction. 
Although less common, neuromuscular changes (weakness, muscle atrophy, and muscle twitching) and polyneuropathy (paresthesias, stocking-glove sensory loss, hyperactive tendon reflexes, slowed sensory and motor nerve conduction velocities) have also been reported.
A delayed idiosyncratic non-allergic hypersensitivity to mercury called acrodynia (pink disease) is sometimes seen in children chronically exposed to mercury vapor; in some cases, it occurs when exposure lasts for only a few days. Symptoms include irritability, sleeplessness, sweating, severe leg cramps, and a painful peeling rash.
Chronic exposure may be more serious for children because of their potential longer latency period."


Nelson and Bauman conclude: "Mercury poisoning and autism both affect the central nervous system but the specific sites of involvement in brain and the brain cell types affected are different in the two disorders as evidenced clinically and by neuropathology. Mercury also injures the peripheral nervous system and other organs that are not affected in autism. Nonspecific symptoms such as anxiety, depression, and irrational fears may occur both in mercury poisoning and in children with autism, but overall the clinical picture of mercurism—from any known form, dose, duration, or age of exposure—does not mimic that of autism. No case history has been encountered in which the differential diagnosis of these 2 disorders was a problem."


There is absolutely no excuse for willful, deliberate, intentional ignorance. None whatsoever.

D. S. Walker's Delightfully Different

Disclosure: D. S. Walker provided a pdf copy of her book for me to review it.

It's a day for reviews! Today, the kids and I are home together on this day before Thanksgiving, and it's warm outside, a balmy 80 degrees! It's really windy, though, so the walk I was hoping to take this morning with the kids is on the backburner. Instead, I decided to dig into the pdf file of a book a blogging buddy sent me. D.S. Walker, who writes the blog Delightfully Different Mia, had shared her book, Delightfully Different, with me last week, so I've been curled up in my recliner busily reading away while the kids play behind me.

It's an interesting short novel, told from both Mia and her mom's perspective and covers a span of more than two decades and ends on the happy note of Mia going to Julliard. It was an enjoyable way to spend the morning.

Many of us parents will be able to relate to the confusion in trying to understand things from our child's perspective and how they perceive the world differently compared to many. Some of us, I know, deal with the same kinds of sensory issues and will recognize ourselves in Mia! I know that I have the same sensitivity to sound and the same kinds of issues with clothing. All three of my kids have similar issues.

Perhaps the most important part of the book, though, deals with the confrontation of bullying when Mia is in fifth grade. All of us parents can relate to the fear we have for our children and the intense need to protect them from harm. Many of us, unfortunately, have had to deal with actual bullying, and I have no doubt that many of us personally experienced bullying as kids ourselves. This was an intense part of the book, but also a practical one as ways of handling the bullying and implementing programs to combat it are employed. We will all, if and when we face this with our children, make different decisions on how to handle it. Some of us will pull our children out of school and homeschool them. Some of us will keep our children in the school and work to stamp out the bullying. What's important is not* the personal decisions we make with our own children but that we support other families as they face and handle these kinds of situations. There is no one-size fits all solution for our children for any issue they face. *edit: Okay, the personal decisions are important, but I meant in the context of the group; the focus should not be on criticizing people for making the best decisions for their families--I hope that makes sense--as I know that many of us make different decisions for our children; I brought the bright boy home and homeschooled him, for example, in order to avoid bullying and an ineffective school system.

We can also all probably relate to the difficulties in communication that can occur between spouses as we try to get a handle on our children's issues and how best to address them. Walker writes openly about the difficulties that occur as one spouse doesn't understand the child and wants to be stricter, more forceful and one parent tries to understand and may inadvertently favor the child with issues over others in the family. Forgiveness plays a role in the novel, in that each family member must learn to let go and forgive. It's an important lesson.

Not every family will deal with autism in the same way; not every couple will be at odds with how to deal with it, and not every family will successfully resolve the conflicts. One family is just that, one family. But it's worth the glimpse in, it's worth the time to see how other families cope, so that we have the chance to contemplate how we might handle things differently.

Books: One to Throw Across the Room, Two to Shrug Over, and Two for Fun

On this Thanksgiving week, I'd like to pause from contemplations of yummy pecan and pumpkin pies and mashed potatoes and gravy and the drool that accompanies such delicious thoughts and look back at five of the books that I've spent time with in the last couple weeks and have finally finished and set aside. 


There are three books that I've been working on for awhile to review for Lisa Rudy's autism site at About.com: Something Different About Dad by Kristi Evans and illustrated by John Swogger, Neurodiversity by Thomas Armstrong, and Connecting with Your Asperger Partner by Louise Weston. Interspersed in my reading of these three are dozens more books (some fun, some not), but I've recently finished two novels that are worth sharing: Grave Sight by Charlaine Harris and You Suck by Christopher Moore.


Connecting With Your Asperger Partner: Negotiating the Maze of Intimacy


First up, in the order of the blog title, is Connecting with Your Asperger Partner by Louise Weston. If  you've read my other reviews, you already know that I can read parents who think autism is vaccine-induced and still be fair to them and talk about what I like about their books and recommend them to readers as being worth the investment of their time. It's a big deal when I can't find a way to be positive here. This book is not worth your time or your investment, and it makes me feel bad to say that when the publisher was kind enough to send me a copy to review. I'd decided not to review it over at About.com because with format demands and the need to offer a different sort of review rather than my often blunt rawness here, a lot of cursing would have been involved in the writing. And all to give it one star? I almost didn't write about it here, but I'm still seriously irked over it, and that says alot.


We have a huge problem in the autism community when it comes to the materials being published for our consumption. Okay, we've got several problems. One: there's no guarantee that the information being published is accurate or helpful (think Wakefield, Olmsted and Blaxill, Jenny McCarthy etc.), and, two, no guarantee that the authors are particularly qualified to offer advice books. Memoirs fall in a completely different category; it's sharing their story, and Stag and Peete both did a good job with that. Yes, some stuff bugged me. Aggggh, Wakefield and the lack of vaccine injury stories to back up the whole idea that vaccines are to blame, for example, but I digress. My point was that there was more good in their books than there was bad, and reading their books are journeys I'm glad I took.


My biggest beef with the Weston book is coupled in a lack of qualification to give marital advice to couples simply based on her marriage to someone on the spectrum and the fact that she uses Maxine Aston's work to do so. For those of you who haven't happened upon Aston, she's created a fictive syndrome, the Cassandra  Affective Deprivation Syndrome


Beware people who create their own disorders and then their own treatments for these made-up disorders. These two things, a lack of qualification coupled with basing her book in hooey, were, in all honesty, two strikes against Weston's book. I kept reading, though. If it were a memoir, these things wouldn't have been deal breakers; relating one's personal story to share what one has learned over the years, through time, is fine: it doesn't attempt to step beyond the narrative and purport to be an expert and qualified to give advice. This book does that: it attempts to be a handbook; indeed its subtitle is "Negotiating the Maze of Intimacy." In my opinion, it's not okay. We really need, really need, the folks offering assistance to be well qualified, well trained, and to back their information up on sound research, not some made-up disorder.


Even looking through this book now to write this post is enough to irritate the crap out of me and make me want to throw the book across the room, and again, that bothers me. Weston surely means well; she thinks she's found the way to deal with her marriage and make it more successful, and she wants to share those tools. However, if they're crap tools based on crap theory, you can see the problem.


It's the second book I've read in the last two weeks to outright equate Asperger's with verbally abusive behavior. And it's bullshit. It flat out is. If your partner with Asperger's is being verbally abusive to you, that is not Asperger's; it's abuse (see Bjørkly, 2009, for a study which found no evidence of a link between Asperger's and violence). And to then couple that conflation with the recommendation that you be the one to change, as Weston's book does, is frustrating at best. Yes, if you're in a relationship where you are being verbally abused, you'll need to make some changes to make that abuse stop. Oh, like getting counseling, or getting the frak out of the relationship, but to actually make as a step of advice that the NT partner have "no expectations" of the partner with Asperger's is complete bunk.  I can think of nothing more likely to cause problems than to explain away abusive behavior, insist that the abused person change, and to give the abuser a pass. We've got more than Asperger's going on here in this book. 


And that's why  I really have to stress that I can't recommend you buy this book. Weston and her spouse may have indeed found a way to make their marriage work (who really knows?), but it is not enough for you to hand over nearly twenty bucks and think a fix for your relationship is to be found. And before you do invest your money in a book to get advice on how to handle a relationship, do yourselves a favor and go see a licensed marriage and family counselor. It'll be money better spent. 




Something Different About Dad: How to Live With Your Asperger's Parent


The second such book to make the conflation between verbally abusive behavior and Asperger's is Kristi Evan's Something Different About Dad. This is a better book than Weston's, one at least authored by someone with qualifications, and one I was able to review for Rudy's site. It is, obviously, not without its share of problems, one of which is equating meltdowns with verbal abuse.

One of the more interesting things about parenting three on the spectrum is trying to determine when a behavior is predicated on an autistic way of thinking or arises from a disability and when one of my kids is just being a kid. Not every behavior is related to autism. And certainly not every bad or inappropriate behavior. If it's autism-related, time is taken to explain why an action was inappropriate and what a better way to handle a situation is and no punishment is given. There's a difference in abusive behavior. My kids get rules, revel in rules, follow them to the letter and make sure others do as well. You think abusive behavior arises out of that mentality?  No. An insistence that the rule needs to be followed does along with a tendency to perseverate on that, but screaming, cussing, berating another individual? Sometimes bad behavior is just bad behavior. 

I wrote last week about free passes and how none of us get them. Well, that goes for my kids on the spectrum. It goes for my husband and me, too. We screw up, we own it. There are no free passes. People are accountable for their actions: there are consequences. Saying someone is verbally abusive because he is on the spectrum is an attempt at a free pass. And it's not okay. We want our children to take their rightful places in mainstream society as fully integrated members with all the rights and privileges. We ask that people be empathetic to their challenges and to help them navigate. Meltdowns from too much stimulation are understandable and sometimes unavoidable, but screaming, hitting, and lashing out at others because they don't like something? No, not okay. So, when I see a grown man (who isn't diagnosed until adulthood) doing that in a book, with the explanation given to the child that he has Asperger's and he can't help it, I'm inclined to think that's less than helpful and license for the behavior to continue.

Okay, so that's my biggest beef with Evan and Swoggin's graphic work, and it's a small part of the overall work. There's some good stuff in there about trying to understand where someone with Asperger's is coming from, but it's surrounded by unfortunate stereotyping and really troubling text like the daughter saying she "still" loves her dad. What the? Really? No. There should be no "still" in there, as if he is less worthy of love because he has a diagnosis. It's very unfortunate and sends the wrong message. There should be no qualifier: my dad has Asperger's and I love him. Period.

 The other problem is that the power balance in the fictional family is weighted so that it's everyone against the dad, talking down to the dad. Perhaps it's time, when we're trying to explain what autism is like, to get the perspective of a person on the spectrum, rather than someone on the outside providing it. It's certainly time to quit talking about people on the spectrum like they are less than our equal partners.

The book, though, is an attempt, to help kids understand, and that's important, if they are NT children. I found myself reading it and thinking, well, hmm, one parent on the spectrum, but neither kid is? Okay, sure. Bound to happen, but just as likely that the children would have traits as well and have some measure of understanding once their parent's behaviors are connected to their own so that ah-hah moment can happen. Maybe that's just me, though, as I can relate a great deal to my kids and their traits as we have many in common.

I can recommend this book to families dealing with this situation providing it's read with an adult (hey, like the parent on the spectrum) so that some of these issues are addressed. It could be, with this supplementation, a good teaching tool.


The third book I've read in this latest batch to review is Neurodiversity. I've actually been reading this for months. I've certainly read harder things, but this was not the easiest book to read, and I'm still not quite sure why. It's not a bad book, and stylistically it is easy to read. Fortunately, Lisa's already gotten a review up of her own, so I won't reinvent the wheel.  

If you are interested in thinking about things, how different mental disorders might have evolutionarily advantageous traits, then this is the book for you. Personally, though, it's pretty darn hard to hold onto the thought that my anxiety issues are a bonus when I'm having a three in the morning panic attack, but that's just me.  

This isn't a book that will help parents looking for advice on how to deal with their children's issues and more effectively parent and help them. It's an intellectual exercise, so if you're interested in that, this is a good book for that. 

Shew, so that's three down: one I'd throw, two that overall I shrug over, and now to the fluff! You can't spend all your time dwelling in angry places; you can't spend all your time on the hard stuff. Do you want to end up like Jack in The Shining?


Grave Sight By Harris- Charlaine

I picked up Grave Sight Friday while doing my shopping with my bright boy, and   enjoyed it so much that I finished it yesterday. I've been working on a Kathy Reich's novel for six months now, so that should tell you something. Grave Sight is short, which is always nice, and it follows the mystery formula quite well, so there's not a lot of mental effort expended. It's fluff and it's good fluff. Like her Sookie books, Harris has a heroine with issues and extras. Harper, the heroine, feels a buzz when she's near a dead body. Hmm, not with dead critters, though, so... Okay, there's still stuff for me to analyze and nitpick, so it's a good romp for me. Enough so that I'm eyeing the second in the series and considering starting it today.

You Suck by Christopher Moore.jpg

Several months ago, the bright boy and I happened on Christopher Moore's works and picked them up. I don't do stuff half-arsed, that's for damn true, so I've got all but one of Moore's books waiting on me. And yeah, it's driving me crazy to realize that this is the second in a trilogy, so we all know what book I'm fixing to take off the shelf and start: the first one in the trilogy. 

I don't know what it is about vampires, werewolves, and lycans (oh my) that captivate our attention, but they're all the rage. Ah well, so are dwarves and elves and dragons. 

You Suck was a fun read and an interesting spin on vamp lore. The main characters manage to figure out that they can eat and drink regular food if they add blood to it. There you go, because you know the worst part of being undead is the loss of coffee. I had some slight issues; there's a young Goth character who uses variations on "r*t*rd" far too often for my comfort. Still, it was a good book and one I really enjoyed. 

In the midst of all the reading I do, from textbooks, journal articles, and the latest books in psychology and neuroscience, coupled with all things autism and all things related to teaching English, it's important to take fluff breaks, to read for pure pleasure and no real edification, to simply veg. Harris and Moore let you do that and for that, I am grateful.

Citation
Bjørkly, S. (2009). Risk and dynamics of violence in Asperger's syndrome: A systematic review of the literature. Aggression and Violent Behavior14(5), 306-312. doi:10.1016/j.avb.2009.04.003.


Disclosure: Review copies of Something Different About Dad by Kristi Evans and illustrated by John Swogger, Neurodiversity by Thomas Armstrong, and Connecting with Your Asperger Partner by Louise Weston were provided by the publishers. I appreciate the opportunity to read and comment on works for the autism community. I was not paid for these reviews. 

I bought my own copies of Harris and Moore's works. :-)