7/30/2010

The End of a Week: Looking Back at Heartaches and Reasons to Celebrate

This has been a full week in the autism community, a rough month, really, for autistic individuals. Two mothers chose to end their children's lives, an autistic boy drowned, and an autistic man my son's age died from hyperthermia after being locked in a hot van, forgotten about by the staff in charge of his care. A lovely family whose blog I only discovered last month while looking for blogs to add to the directory lost their young daughter this week and will spend tomorrow celebrating her short life. 

It has been a heartbreaking month. And these are just the losses we know about, the ones within our community of autism and the broader disability community. Each day, families are faced with these kinds of tragedies as we live our often insular lives, protected from feeling the enormity of loss that so many people deal with on a daily basis.

Blogging, facebooking, tweeting, and other social media allow us to be a part of a larger community, to be connected to other families in similar situations, facing similar challenges. We are, in so many ways, so very blessed to be able to reach out to others through a keyboard, connect intimately with others, and in doing so find our journey a little easier, the path a little straighter, a little smoother. 

We are not alone. It is a wondrous thing. For all that the internet and these new social media are used to argue, create divides, harass, torment, and bully (and they are), they are also used to create communities whose members support and lift each other, who celebrate our victories, small and large, and who mourn with  us when we suffer inevitable losses.

It is a tremendous thing to be able to connect with people from all over the world, from so many cultures, and so many different kinds of lives, and to see the humanity within each other, to care for each other.

We make choices each and every day when we log onto the internet and cast about for information, for conversation, about how we will conduct ourselves. Some days, well, the snark has to come out. But most days, it doesn't even raise its head. Not even a little. Most of us, I honestly believe, go about our lives trying to do the best we can for our children and our families. Most of us try to make the world a little brighter in our corner of it.

Most of us don't think there's a global conspiracy to depopulate the earth and that they're doing it one young man on a hot van at a time. Most of us don't think that the senseless death of an autistic man by a staff member is anyone's fault other than the staff member's. And most of us don't sit at our computer and read these kinds of comments and think, yes, these are the comments I'll approve. Most of us don't intentionally, deliberately, set out to create sites that foster the kind of rhetoric that has left that site with its credibility in tatters. Most of us don't sic our readers on well-intentioned bloggers who write compassionate heartfelt essays about how they have learned and grown because of their interaction with disabled patients.

Most of us. And aren't we grateful for that? On any given day, I know that I can post a comment on facebook and I will have friends ready to talk, chat, laugh, support, whatever I need. I can write here or at another of my blogs, and I know that support can be found. I can go to any of my friends' blogs, read their posts, celebrate with them or offer support and empathy, whatever is needed and find the companionship and support I need.

Most of us, I think, do that. We look for support, for friendship, for community. We reach out to others because we wish to be of help. We want to make the world a better place. We don't expect easy answers. We're not looking for cures (although we'd do anything we could to make our children's lives better, easier, happier, more successful). We're not looking for pat answers. We have learned to live without certainty. We have learned to breathe, to move, to roll with what life throws at us because we have built our life rafts with each other.

And we work each day to widen our nets, to draw new friends in, to be that port in any storm, that soft and welcoming shoulder. We have been alone. We have known fear and doubt, and we know we will face it again. Some of us face it each day. But having our net, here on blogs, in forums, on twitter, on facebook, in emails, we know we'll still be upright at the end of the day. We may be upright on our knees, praying, hoping, wishing for the strength to wage the battles we must the next day, but we are not alone in this journey, and we know we can go on, one day at a time, with our friends and families beside us.

There is tremendous power in that. We have the ability to reach out and make other people's lives a little bit easier, a little better, by showing that we care about them, that we support them. We can make people smile, we can make them cry in joy at knowing others are with them. And we can receive that back tenfold. 

I am enriched by the community I have found online, made better for it, even if it means that my heart breaks all the more often when my friends are hurting. It also means my joy is increased when things go well, when a child speaks a first word, when an award is won, when a new skill learned. 

I am optimistic, despite the tragedies, because these tragedies no longer occur in a vacuum, because we hear, we listen, we support, and we work for change, real change that will make lives better.







7/29/2010

What Most Parents Should Want

"My comfort zones have widened, not getting rattled by “abnormal” as I once did.  I used to feel uncomfortable with the mentally and emotionally disabled, now I am not."  -Dr. Rob

We've all had that experience, I'm sure, of taking our child with a disability out, either to an appointment or to an event, only to have someone, the doctor or a bystander, give our child a look, pull back, or begin to talk to our child differently once the person realizes our child has a disability or an issue. My oldest hates it when a doctor, once aware of his autism, either starts to talk loudly to him (he's not hard of hearing) or over him as if he weren't there.

So, one would have thought that this post by Dr. Rob would have many in the autism community glad to see a health care professional who gets it, who sees our children for who they are, who values them as they are. One would have thought. But no. AoA can't do that, and for some reason that completely escapes me, Stagliano had to take this positive piece by the doctor and link it to the alleged murder-suicide by a mother of her 12 year old autistic son, replete with a picture of a pink handgun, I guess, all the more to match her book cover which appears below the short, twisted post. In fact, Stag's new bio is one half the length of the short article she posted, all with information on when her book will be available.

Dr. Rob's post is an important post, one that we should encourage. Angry parents need to take a minute, pull their heads out of their backsides and really read the words on the screen. I am continually dismayed at how anger and desperation can so badly pollute the dialogue and twist the meaning of others' words.

Acceptance doesn't mean not assisting, not helping, not working to improve. It means accepting the inherent value and worth in each and every individual. It means not shrinking away from those who are different, not treating them like the other, as if they are less than human.

Here is a doctor who writes about what he has learned, who shares how he has comes to see autistic individuals as worthwhile, valuable individuals to be treated and interacted with in the same respectful, accepting way you would treat a "normal" patient. It is absolutely what any parent of a child with a disability should want.

How the hell do you miss that? How?

My son attends a center for the physically and neurologically disabled. The individuals there are diverse and represent a wide swath of the potential developmental and physical disabilities that are possible. When I go to an event at the center, I watch the interaction of the staff with the clients and with outsiders, like the reporter who came to the last event, to see how the clients are treated. The staff treats my son and his friends with respect and acceptance. As I watched the local female anchor from one of the stations interact with the clients, looking them in the eyes, shaking their hands, interacting with them casually and naturally, I was deeply impressed. That doesn't happen in the wider world far too much of the time. As I listened to one of the clients speak about what the center meant to her because there at the center she was treated like she was normal, I had, as my daughter calls them, leaky eyes.

What I work for, what I believe in, what I want more than anything is for people like my children, like your children, like you, like my son's friends at the center, like my mother's patients at the supported living center, to be treated with respect and acceptance. Genuine, heartfelt acceptance. The kind of acceptance and appreciation that Dr. Rob displayed with his post.

The kind of acceptance and appreciation that the readers (and managing editor) of AoA have decided to crap all over.

7/28/2010

Putting quotes around something doesn't make it not so

It must be a slow week over at aoa that they run a short, nasty bit on Brian Deer by "Jake Crosby" -- see the quotes around your name don't really do much, do they, kinda like your quotes around journalist don't really make Brian Deer not a journalist. There's no doubt, no question, that Deer is journalist. And Deer placing pictures of himself on a page called Brian Deer's pictures doesn't fit the definition of narcissism.

I do begin to see the problem, though. The folks over at AoA must not have access to a dictionary or a good grammar book, either. And rather than dealing with OSR#1 going off the market, they decide to attack Deer.

How about the daily newspaper of the autism epidemic cover some of the horrific stories on autism? You know, like Neli Latson still sitting in jail? Or the story about the 8 year old girl who was handcuffed and arrested at her school? What about the young autistic man who was left in the van and died?

Nope. None of that matters, not like attacking Deer and then letting the readers see who can offer a more offensive response.

I mean, really, of all the things that face those in the autism community, the daily newspaper of the autism epidemic had nothing better to do than to train Jake Crosby in hate? That's how they reach out and help adult autistics? Nice.

7/27/2010

Frakking Awesome Shot


Hah! Sometimes I manage to nail a shot. :-)

When A Look Says it All, and in case it didn't....


Some days, it's just best to steer clear, you know? No drama today, at least none that I haven't made on my own, and I don't intend to make any.

Everyone needs drama-free days. Everyone has the right to have a day off from the incessant internet autism wars. And every now and then, perhaps folks ought to check themselves to make sure they aren't part of the problem.

I'm not saying you don't fight the woo. I'm not saying you don't point out faulty reasoning. But maybe you don't do it with something approaching glee?

And when you run across someone who's obviously off the deep end, well, maybe instead of engaging the person directly, you back up and move on? Because that ain't a fight you're gonna win. Maybe asking why you fight it directly head on with said crazy person when you know the person will only escalate the rhetoric is something to be considered.

Not all battles have to be fought. Not all battles should be.

Instead, take a moment and relax. Breathe. Find the joy and the beauty in the world and for a moment contemplate how uniformly awful that other person's life must be to live within that vortex of foaming-at-the-mouth rage, how the need to lash out and strike others must well up in the person until it is a compulsion. Feel pity, if you must, compassion if you can, but learn to back up and away from those people.



Take a day off from the drama and find something beautiful!

7/26/2010

Enzyme Woo Woo and Press Releases: Buyer Beware

Have you noticed that press releases stand in for news? I bet that a fair number of folks miss this and think that these "news" reports are genuine. Both Medical News Today and Science Daily provide the press releases, usually with no commentary and no fact checking, as seen in this snafu last month with the IVF and autism rates in Israel.

There's a problem with press releases replacing journalistic investigation, and it's no wonder that journalists do such a bad job, on average, with science reporting. It's no wonder that bloggers pick up on the press releases and run uncritically with them. Some of them already believe the sky is falling and that big pharma is to blame for that. These websites masquerading as news sites really don't help folks exercise critical thinking skills.

Medical News Today passes on  Enzymedica's press release and lets people think, if they choose to simply accept press releases at face value, that good science has been done. What's the harm in the uncritical passing  along of press releases on sites like Science Daily and Medical News Today? People confuse these press releases with peer reviewed substantiated science.

That's not what they are, though, most times. If you go to Enzymedica's site, you can take a test to see what enzymes you are deficient in. Don't let it bother you one little bit that this little test can't do that. Enzymedica will give you your results and their product recommendations, too. Hey, do you like carbs or sweets? You have a deficiency in amylase. Seriously, it's what the results say, and they can't be wrong:

"
Amylase Deficiency:
Breads, pastas, or desserts might be your favorite foods; they may be taxing for your body to digest. Inconsistent energy levels, blood sugar irregularities, inability to concentrate, and allergies or sensitivities are all trademarks of an amylase deficiency. Amylase is the name for a family of enzymes that is responsible for breaking down sugars, carbohydrates, and fiber. Our bodies also produce amylases that help to support healthy amounts of histamine and keep our blood sugar balanced."

Oh, well, there you go. How can I fix that?

"Focus on whole grains, vegetables, and protein based snacks. Many amylase deficient types are vegetarian; emphasize nuts and seeds, soy and beans to get the protein you need to support stable blood sugar levels. Replace refined carbohydrates such as white flour, white rice, and white sugar with whole, unrefined grains. Fruits and natural sweeteners such as agave, brown rice syrup, and stevia are healthy choices to satisfy your sweet tooth. If you are one of the many amylase deficient types who craves sugar you are not alone! You will notice that as you move toward a less refined, more whole foods diet you will crave sweets less and less. It is a process, so be patient with yourself and have fun exploring alternative ways to satisfy your desire for sweets!"
 Hey, this company should get with Mercola, don't you think? Now, what products do they sell that they think will heal me?

I need Digest. A month's worth will run me about 30 bucks. What else do I need? According to my test results, I need Pro-Bio, Allerase, and Virastop. Pro-Bio runs 24 dollars a month; Allerase will set me back 24 bucks a month. Virastop will run me 29 bucks a month. Shew. Enzymedica recommends four different products all ranging 24 to 30 bucks a month a piece, but I can get free shipping for orders over 75 dollars.

Gosh, can you imagine me actually buying this stuff? Well, how many parents read that press release on Medical News Today, took the 143 parents surveyed and misconstrued that as good science, and then got down to ordering products for their kids? After all, Enzymedica covers this in their faq:

"34. My child is autistic, what products do you recommend?
First we recommend researching other parents similar results through the website www.enzymestuff.com and the book Enzymes for Autism by Karen DeFelice. Product recommendations begin with the “low and slow” dosing method. Lacto digestively with meals and Virastop therapeutically between meals. Slowly building up tolerance to enzymes, increasing potency, ultimately to Digest Gold with meals and large mounts of Virastop if necessary between meals. If there is gluten intolerance – ½ GlutenEase and ½ Digest Gold."
 Consumers of scientific literature are faced with what seems like an insurmountable amount of information on a daily basis. Failing to realize that a fair amount of that "news" are in fact press releases designed to sell products can cause unsuspecting individuals to spend money on woo, all in the misguided belief that the information in those press releases is legitimate scientific information.

Buyer beware, indeed. The internet is a dangerous place for desperate individuals looking for cures.

Before You Step Out, Take a Look Around

But before you step out, have a friend check, too.
If it doesn't check out, then go back in and chill:

7/25/2010

Frogs, Fishes, and Flowers: Another Weekend in the Garden

Before the rain came this afternoon, Rick and I managed to get a fair amount of work done in the garden. With the front garden for the most part under control, we turned our attention to the jungle that our back has become.

You can see the pond again! And in the far right corner, there are the frogs.


The fish are thriving!
I've begun clearing pathways again, as well.
It's a start anyway! We burned some of the mess I made pulling the spent flowers and weeds. And Rick managed to get a bit carried away when he was burning, singeing our peach tree:
I even made a friend:
And got a picture of a frog with one eye missing:
Didn't seem to bother him too much, though. He got up on the shelf of the table, at any rate. Another view of the frog showing the damaged eye. I like to think he's thinking deep thoughts while wishing the lady with the camera would leave him alone.
Just thought I'd point out again that we've got a lot of fish. A lot.
How can sunflowers not make you smile?



Hope everyone had a good weekend and that this week will be wonderful for each of you. :-)

7/24/2010

Seeking Clarity


It was a week, you know? In the real world, it was a good week. The kids are happy and well and enjoying the heck out of themselves. Sure, it's loud here, and we've got issues to attend to. My oldest garden girlie has some temper issues that we're working on. Bless her heart, last weekend after a blazing temper display over a simple question, I sat down with her and went over some questions she should ask herself. She, every inch my child, took notes, I kid you not.

What were the rules, which are now sing-sung to anyone having a bit of a hissy and for which I await having thrown back in my face?

1. Is this emotion appropriate?
2. Am I overreacting?
3. Is there a better way to handle it?

Well, at least she, and anyone in hearing distance, is internalizing these rules. Yesterday, she, along with her sister and cousin, turned it around and made a song about her brother, "Bobby's overreacting" to the tune of for he's a jolly good fellow.

So the real world here is busy, it's bright like those lovely yellow chairs in the picture above, and it is by and large, good. Complex, interesting, busy, but good.

The wider world, though, that's not so good, is it? The autism internet community finds more and more ways to make sure the divides become chasms and they do so over the graves of two innocent children.

I generally don't like what I read over at AoA, and the comments are exceptionally poor, but that's come to be expected. What really comes as a surprise at times is what I read of folks I expected better of. Vengeance, threats, the desire for violence to come to others are all things I don't understand.

I really don't. Rushes to judgment, the need to engage in all-out warfare, in a scorched-earth policy, I don't get. You know, I like details, lots and lots of details and as many facts as I can get my hands on. Well, if one doesn't have them, then it would be better to back up some, acknowledge that and temper one's reaction.

You know, ask is my emotion appropriate, am I overreacting, is there a better way to handle it. Seems to me that there's a great many of us who could stand to ask those questions of ourselves before we fly off the handle.

I'm going to work in my garden, sit in one of my new chairs with my husband next to me in the other, and I think we shall drink a beer and watch the buddha fountain and take a moment to be grateful for what we have.

7/22/2010

When Parents Kill: Filicide Usually Accompanied by mental illness

ResearchBlogging.org

There are some commonalities that almost everyone in the autism community can get solidly behind and that is the issue of filicide. Too many children in this country are killed by their parents. One such murder alone is too many. Of course, our attention is brought to bear when we hear autism in conjunction with a child murder.


A Dallas woman murdered her two young children because, according to her 911 call, they were autistic. While our attention is focused on this case, as parents in the online community argue that media attention is on this case because of autism, and speculation amongst some parents runs to the paranoid ("Make autism parents look crazy and that's why they have autistic children. This all feels like one big CIA human experiment."), it's important to consider larger societal issues regarding filicide.


What kind of people kill their children? Is this really about the autism, the disability, and an inability to cope because of the situation? Or is there something else at work here?


Farooque and Ernst (2003) examined filicide and some of the conditions that appear to be involved in cases. They note that the US Justice Department reported that in 1999 there were over "1000 children died as a result of maltreatment where the alleged perpetrator was the child's parent."


The literature on filicide actually goes back a ways; Farooque and Ernst point out that Resnick in 1969 set out a classification system for why parents kill their children and note that intellectual impairment of the perpetrator was not part of the classification system. Indeed, they note "Nearly forty years later, it is apparent that
these constructs have added little to the understanding of the etiology of filicide and, more importantly, have often distracted investigators from more mundane and practical factors such as intellectual capacity and/or substance abuse of the perpetrator." If categorizing why parents say they do despicable acts isn't adequate as explanation, examining the mental health of the perpetrators can at least provide a window into the act.


According to  Farooque and Ernst, "Maternal mental illness has been found to be especially important in the incidence of filicide." Faroouque and Ernst summarize the current state of knowledge on filicide thusly: "mental illnesses, including psychotic symptomatology and affective illnesses, were frequently found in both male and female perpetrators of filicide."


Farooque and Ernst expanded their study to also examine the intellectual capacity of individuals who committed filicide during an eight year period. Their findings are interesting:


 Only one of the 19 cases revealed an Antisocial Personality Disorder while 10 of the 19 cases satisfied the diagnostic criteria for substance abuse/dependence. Two of these were intoxicated at the time of the crime. Only five subjects were psychotic at the time of the crime. On the other hand, eight of the 19 had some level of mental retardation. Of these, four scored in the borderline range (70-84) and four were in the range of mild mental retardation (55-70) based on DSM-IV criteria (American Psychiatric Association, 2001).1 We also found a positive relationship between borderline or mild mental retardation and evidence of child neglect by the perpetrator prior to the filicide event. Eight subjects revealed evidence of having perpetrated child neglect/abuse and, of these, seven satisfied the criteria for borderline or mild mental retardation. These subjects were significantly younger than those with normal intelligence.
Hatters Friedman et al. (2005) found that "Over three-fourths of our filicide-suicide offenders had evidence of mental illness. Less than two-thirds of those with mental illness had been in mental health treatment." 


It would be convenient to twist this most recent filicide as an indictment of particular ideologies within the autistic community (indeed, this has already begun). The blame for these two children's murders does not rest in the autism community or in one particular faction of it. It does not rest with the public service announcements created by Autism Speaks (as some at Age of Autism would like to suggest). It doesn't rest with neurodiversity advocates. It doesn't rest with those who would cure autism at any cost. The blame rests squarely on the mother's shoulders.


There isn't enough information about this mother, her exposure to the autism community, her mental health, her level of support, period to answer why she did this act, what led her to that monstrous act. Is it more than likely, based on the research that has been done on filicide, that she is mentally ill? Yes. Does her lack of affect in the 911 call suggest mental illness? Yes. Can you be mentally ill and intentionally premeditate the murder of your children? Yes. Should she be held legally responsible? Yes, one way or another, she should be held accountable for her actions. They are reprehensible and without defense. Looking for other people to blame to further one's own ideology is irresponsible.


We do, as a society, need to do a better job of providing support to families, at providing education, and appropriate mediations. Was this a family in need of better support? What access to services were there? Was there a history of mental health issues? Speculation is pointless. Waiting for the facts in the case make sense here. What does seem clear is that the mother did do this. What is clear is that this is an unacceptable act. 


So, leaving that aside, what do we know about parents of autistic children, coping-wise? Pottie and Ingram (2008) found that the severity of autistic symptoms was not correlated with parental daily mood. They found that in "terms of significant predictors of daily positive mood, on average, 10 coping responses were found to predict daily positive mood." Pottie and Ingram found that "higher levels of daily positive mood were predicted by" the following type of coping: "Seeking Support coping," "Problem-Focused coping," "Positive Reframing coping," "Emotional Regulation coping,"  and "Compromise coping" while "lower levels of daily positive mood were associated with "Escape coping," "Blaming coping," "Withdrawal coping,"  and "Helplessness coping." 


In other words, how parents choose to cope is more important than the severity of the situation they are dealing with. If you're feeling overwhelmed, if you're feeling under-supported, then you need to reach out, you need to let people know. And we need to be there, be ready and willing to offer our shoulders and our time to those who are struggling.

Farooque R, & Ernst FA (2003). Filicide: a review of eight years of clinical experience. Journal of the National Medical Association, 95 (1), 90-4 PMID: 12656455

Hatters Friedman S, Hrouda DR, Holden CE, Noffsinger SG, & Resnick PJ (2005). Filicide-suicide: common factors in parents who kill their children and themselves. The journal of the American Academy of Psychiatry and the Law, 33 (4), 496-504 PMID: 16394226

Pottie, C., & Ingram, K. (2008). Daily stress, coping, and well-being in parents of children with autism: A multilevel modeling approach. Journal of Family Psychology, 22 (6), 855-864 DOI: 10.1037/a0013604

7/21/2010

A Midweek Pause for Flowers

Roses by George Eliot
You love the roses - so do I. I wish
The sky would rain down roses, as they rain
From off the shaken bush. Why will it not?
Then all the valley would be pink and white
And soft to tread on. They would fall as light
As feathers, smelling sweet; and it would be
Like sleeping and like waking, all at once! 

7/20/2010

The Value of Ideas and the Willingness to Let go of Certainty

I've been thinking about the value of ideas today. I've been thinking about how we parse language, how we see the world in ways that confirm our belief systems.

We look for connections, for explanations, for why. We really don't like not having the why of things. Without the why, we lose our illusion of control, our belief that if we just know the cause, we can keep it from happening to us.

We'll take fake causes because they act as balms. They soothe us, allow us to relax, believe the myth that everything is under control.

It's had me thinking, as I've read the comments over at AoA's credibility post, as the day's progressed, wondering if one of the key differences in some parents is that whole control issue. Maybe some of us are okay with not knowing all the whys. Maybe some of us get that there aren't finite, neat answers for everything, and that most folks do the best they can. Maybe some of us get that doctors aren't infallible and don't have quick fixes for all of the mysteries and messes of life.

Is that part of it? Would the die-hard AoAers, those who leapfrog from why to why, from vaccines to monkey viruses to lyme disease to retroviruses to mito damage to all of them in some weird-ass combination, have still been like this if their child(ren) hadn't been diagnosed with autism? Are they wired to see conspiracies everywhere or does that add an element of drama and flare that they just have to have?

We root for the underdogs, you know? We like David and we want him to defeat Goliath. We cast ourselves as the heroes in our own great adventures, and we need bad guys, right? It provides a narrative, a structure, a meaning to our lives. It gives us our why.

I think that stepping away from that need to cast ourselves as David, I think that accepting a nebulousness about reality in that we acknowledge our lack of control is really, really hard to do. No solid ground, right? No rock. No ready answers.

I'm willing to balance, hopefully with some level of grace, but admitting freely more often than not with a great deal of bumbling, like Nataraja, Lord of the Dance, and hope that I can keep all my balls in the air with a little bit of help from my friends and family. And a lot of reliance on the scientific method.

I don't know all the answers, and I love the mystery that's inherent in admitting there's so very much to be learned. I hold my beliefs loosely, like balls being juggled in the air. I hope to find balance. I hope to maintain a humility in the realization that there are more non-answers than answers and that sometimes I'll drop a ball or two, or see a ball transform.

It's okay not to know all the answers, to not have all the whys.
It doesn't mean I can't build a good life for my children, my husband, and myself.
It doesn't mean I can't work to make the world a better place.
It doesn't mean I can't find reasons to laugh, to delight in the world.
It just means I have to let go of illusions, of certainty.
I have to be willing to dance, even if it means I sometimes stumble.

I choose this path. I choose it with intention.
Do they? Do they choose their paths with an openness of mind, with a willingness to be proven wrong?
Do they? Do they work to make the world a better place? Or do they work to foment drama?

Ideas matter. Indeed, credibility does as well. How do they spend their credibility?

Anne Dachel may think this is a battle, a war, to be won: "It's going to be a fight till the end---but we will win."  And she keeps it cast as a battle concerning vaccines and pharma and government as the enemies, with vaccines as the weapon.

Does that even make sense to anyone? Can rational people read AoA and not see the illogic? It isn't, as Dachel and others there would have people believe, a battle about vaccines and a vast conspiracy. It's about ideas. About certainty. And the illusion of control.

Perhaps people nod and offer them no argument for reasons other than credibility? After all, when your work online is to attack and attempt to destroy the career of any government official or medical expert who takes you on, perhaps it's more about going along with the bully in order to avoid being a target.

Autism Blogs Directory

Kathleen and I have close to 300 listings over at the Autism Blogs Directory now. If you haven't given the directory a look, I hope you will click the link and look through the listings to see if you can't find some new friends to read and maybe suggest some of your favorite blogs to add. :-)

7/19/2010

Joy and Laughter


I hope you all had both joy and laughter today. I did, an overflowing bounty of it.

On a laughing Buddha side note, Deepak Chopra shares his monk photos on Huffington today. Interesting. Already back in New York, though, so I guess he was taking his version of a Dude Ranch vacation. There's a comedy film in there, I'm pretty sure.

Could it Happen to My Child? Why Neli's story and Zakh's story could be yours, too

If you’re a parent of a child with a disability, you undoubtedly have your ears perked up for news about autistic individuals. And it seems like there’s always another story in the news about an autistic child or young adult being arrested at school or around town.

We’re horrified when we read a story about an eight year old handcuffed and arrested at her school. We rally around families like Zakh Price’s when he’s arrested and charged with assault and dismayed when justice is delayed.

We tweet and do our best to spread the word when a young man with Asperger’s is considered suspicious because he also happens to be black and sitting patiently outside a library waiting for it to open. Finally, a story gets national attention, and yet still he sits in jail. Fortunately, the other young man detailed in the Newsweek story who was tasered and arrested by police while waiting for his brother outside a bar and grill was released. Neli Latson has not been as fortunate, and we parents with children around the same age watch from the wings, concerned because we know all too well how easily it could be our children.

We do the best we can for our kids, we work tirelessly to help our children learn coping skills in order to avoid meltdowns, how to moderate their stims so they don’t attract suspicion, and we work to help the schools they attend understand our children and their triggers. It feels like an unbelievable betrayal when we read that a principal has called the police on an eight year old and even worse when we read that the principal did it “to ‘get their point across to (the girl) and her parents.’” That is a violation of our trust. We send our children to school with the hope, the faith, the belief that the staff and teachers will protect our children and keep them safe.

We have work to do. A lot of it. We must better educate the public to recognize disabilities and differences and to have more compassion (it isn’t just about autism, and if we’re working to change the world, it better be for everyone) for those who are disabled. We have to work with our school systems to make sure that common sense and practical solutions are found so that police aren’t called when a child has a meltdown and strikes out at a teacher or staff member who isn’t handling the situation well. We need to have a zero tolerance policy for school employees who abuse students or intentionally set up a situation so that a child will meltdown. We need, as parents, to be willing to volunteer in our children’s schools, to work to educate the staff. If a school is overburdened with special needs children and doesn’t have the finances for adequate aide staffing, then we need to work with the school to set up a volunteer program (with training) so that individuals interested in helping can.
We need to do better at training first responders. Autism Speaks has an Autism Safety Project to train first responders. Don’t wait for someone else to do it, though. Check with your local first responders and see if they’ve received training. Arrange a tour for your children of the police department, fire station, and work to train your child to know how to respond to questions from first responders. Teach your children how to show a card or an ID bracelet identifying their autism to first responders.

It would be all too easy to sit on the sidelines and blame the parents for the situations their children have found themselves in. In fact, we’re hard-wired to do so, to find a way to blame them so that we can rest comfortably in the notion of “not us.” Well, if you think that, you’re wrong. It could be us. We could do everything right. Our child could do nothing wrong. And it could still happen to us.

After Neli’s story came to my attention, I started to watch my son when we were out at stores; he’s nearly 21, and he’s got a cell phone, so he’ll go to the card aisle or the electronics section without us. He should be able to do that; he’s not going to get lost; he knows where we are in the store, and we can always reach him through his cell phone. I no longer feel comfortable, though, in letting him do this. Why? Not because he can’t navigate this, but because I worry what others will do. My son doesn’t make eye contact much. He wears a ballcap. As he’s walking in a store, if we’re not right by him, his eyes dart rapidly back and forth and he mutters to himself, a nonstop stream of muttering. He looks suspicious. And Neli Latson and Clifford Grevemberg’s stories make it clear that I cannot count on bystander’s common sense and willingness to consider hidden disabilities.

So, while I wait for society to catch up, I keep my son close to my side and I redouble my efforts to help him learn not to dart his eyes back and forth so rapidly, to raise his head, to stop muttering. I work harder with my girls to help them learn control of their emotions so that I can send them to school, confident not so much in the common sense of the school’s employees (and I love their school and the teachers and employees who’ve been nothing but wonderful) as I must learn to be in my daughters’ ability to not lose control.

What else will I do? I’ll ask the first responders in my town how well trained are they to deal with the disabled.  I’ll ask the school resource officer how he’d handle a hypothetical situation involving a special needs student. I’ll ask the principals in my daughter’s schools how they would handle meltdowns. If there aren’t any training programs in place, then I intend to work with the appropriate organizations to make that happen.

It’s time to stand up and to work actively in our own communities. It isn’t enough to read about these stories and tsk-tsk over the tragic stories and then think “not me.”


**I apologize for the awkwardness of the parentheticals.** Ain't changing them, but at least I said sorry. :-)


See this Autism Speaks page for information on how to help your autistic family member interact with first responders.

7/18/2010

A Good Weekend of Work

The weekend began with the gardens in disarray (although looking better than last week).



The front garden is much improved.


That's a lot of seeds to be spread around!


The front garden doesn't look half-bad!


There are pockets of bloom still to be found and the roses are gorgeous.


It's easy to breathe deeply and feel refreshed when surrounded by the beauty of flowers and the satisfaction of work well done.


Walking inside to take a break, it's nice to be greeted by the cool of air conditioning and the sounds of three children happily engaged in their favorite activities.


It's a joy to leave lunch in the hands of your oldest, although it was a fortunate catch that I checked the hot dog buns before he put the hot dogs in them (had to explain moldy to him!). He did great, all in all, and we enjoyed the lunch tremendously.



But the garden work is never done, and there's always time to stop and smell the roses.


Occasionally, though, you sit for a well-deserved spell. If I'd been thinking, I would have brought him a beer instead of a diet sprite. My husband makes my gardens possible. Thank you, dear, for your mostly complaint free and always tireless efforts (and for not making me stick my hands in the dirty pond water to clean the filter, most of all!).


The back garden is still very much a mess, although we did eat some sweet grapes right off the vine.


We admired the frogs, who have grown fat and complacent.


And the miracle fish:


It's good to take a break from your worries. It's good to find work that allows you to be in the flow. It's great to stop and just enjoy your family and the lives you've worked so hard to create. When things are good, you should do what Vonnegut suggests, look around, and say, "If this isn’t nice, what is?"

7/17/2010

Hah-HAH!

Where I was at mid-morning.

Same vantage point this evening.

Woo-hoo! Progress!

Tomorrow, the ritual stripping and spreading of the seed will commence.

Hee!

Working, Working...In Which I Make Progress

See that gap between the second and third mulberries? That right there, my friends, is progress. It better be progress as it took a couple hours yesterday to do.

I am currently fortifying myself with my second cup of coffee while my back massager hums against my back working at the various kinks and stiffness, and I will shortly be back out there, hacking away at dead hollyhocks, piling them into huge piles so that we may engage in the ritual stripping and spreading of seeds so that I might do this all again in one year.

You ask me, why? Why do this? The hollyhocks make me break out in a rash and itch like crazy, they take weeks to clean up after they've gone to seed and I hurt worse than usual while doing this. Ah, this is why:


If we're good enough parents, we do the hard, back-breaking work whether we wish to or not so that we can have a chance at the rewards. Not for ourselves, but for our children. It's our job, and perhaps if more people went into parenting with that awareness and acceptance that it's years of hard, often seemingly thankless work, well, they'd handle that work a bit better.

My recommendation when you're tired of all the work, when you think there's no hope it will ever amount to anything, is to find something like gardening, so that you will have a reminder that it does all work out; that your efforts matter, that your children will grow and blossom in ways you could never have imagined. It won't be the way you expected it to; I have flowers that have now spread throughout a half acre that originated eight years ago from one tiny packet of seeds. Tending, caring, nurturing matters.

And with that though, I shall go tend, care, and nurture those hollyhocks.

Oh, and one last thing: Laugh and laugh alot. It makes a hell of a difference.

7/15/2010

Age of Autism: Reporting Like its 2008 UPDATED

Dan Olmsted and Mark Blaxill are right on top of the science in their reporting of a brand new monkey study showing that monkey brains on vaccines look like autism brains! Except it's not a brand new study. And Wakefield's name may have been taken off of it, but when it was first presented in May 2008, his name was on it. Oh yeah, and it's a sample of 13 monkeys with a control of 3.

What is it exactly with the AoAers that samples of 12 and 13 are absolutely the hard hitting science they'll buy, but huge studies with thousands and hundreds of thousands of PEOPLE are bad science? Okay, I know confirmation and disconfirmation biases are a large part of it, but still? It's really amazing how they all don't even read the studies, they go off of what people say at AoA and it's good enough for them.

The presentation of this Wakefield study is provided by a Heather over at Science-Based Medicine. I'm copying and pasting it here (I figure she copied and pasted, so why not?):

Pediatric Vaccines Influence Primate Behavior, and Amygdala Growth and Opioid Ligand Binding
Friday, May 16, 2008: 5:30 PM
Avize-Morangis (Novotel London West)
L. Hewitson , Obstetrics, Gynecology and Reproductive Sciences, University of Pittsburgh, Pittsburgh, PA
B. Lopresti , Radiology, University of Pittsburgh, Pittsburgh, PA
C. Stott , Thoughtful House Center for Children, Austin, TX
J. Tomko , Pittsburgh Development Center, University of Pittsburgh, Pittsburgh, PA
L. Houser , Pittsburgh Development Center, University of Pittsburgh, Pittsburgh, PA
E. Klein , Division of Laboratory Animal Resources, University of Pittsburgh, Pittsburgh, PA
C. Castro , Obstetrics, Gynecology and Reproductive Sciences, University of Pittsburgh, Pittsburgh, PA
G. Sackett , Psychology, Washington National Primate Research Center, Seattle, WA
S. Gupta , Medicine, Pathology & Laboratory Medicine, University of California – Irvine, Irvine, CA
D. Atwood , Chemistry, University of Kentucky, Lexington, KY
L. Blue , Chemistry, University of Kentucky, Lexington, KY
E. R. White , Chemistry, University of Kentucky, Lexington, KY
A. Wakefield , Thoughtful House Center for Children, Austin, TX
Background: Macaques are commonly used in pre-clinical vaccine safety testing, but the combined childhood vaccine regimen, rather than individual vaccines, has not been studied. Childhood vaccines are a possible causal factor in autism, and abnormal behaviors and anomalous amygdala growth are potentially inter-related features of this condition.
Objectives: The objective of this study was to compare early infant cognition and behavior with amygdala size and opioid binding in rhesus macaques receiving the recommended childhood vaccines (1994-1999), the majority of which contained the bactericidal preservative ethylmercurithiosalicylic acid (thimerosal).
Methods: Macaques were administered the recommended infant vaccines, adjusted for age and thimerosal dose (exposed; N=13), or saline (unexposed; N=3). Primate development, cognition and social behavior were assessed for both vaccinated and unvaccinated infants using standardized tests developed at the Washington National Primate Research Center. Amygdala growth and binding were measured serially by MRI and by the binding of the non-selective opioid antagonist [11C]diprenorphine, measured by PET, respectively, before (T1) and after (T2) the administration of the measles-mumps-rubella vaccine (MMR).
Results: Compared with unexposed animals, significant neurodevelopmental deficits were evident for exposed animals in survival reflexes, tests of color discrimination and reversal, and learning sets. Differences in behaviors were observed between exposed and unexposed animals and within the exposed group before and after MMR vaccination. Compared with unexposed animals, exposed animals showed attenuation of amygdala growth and differences in the amygdala binding of [11C]diprenorphine. Interaction models identified significant associations between specific aberrant social and non-social behaviors, isotope binding, and vaccine exposure.
Conclusions: This animal model, which examines for the first time, behavioral, functional, and neuromorphometric consequences of the childhood vaccine regimen, mimics certain neurological abnormalities of autism. The findings raise important safety issues while providing a potential model for examining aspects of causation and disease pathogenesis in acquired disorders of behavior and development.
Pediatric Vaccines Influence Primate Behavior, and Brain Stem Volume and Opioid Ligand Binding
Saturday, May 17, 2008
Champagne Terrace/Bordeaux (Novotel London West)
A. Wakefield , Thoughtful House Center for Children, Austin, TX
C. Stott , Thoughtful House Center for Children, Austin, TX
B. Lopresti , Radiology, University of Pittsburgh, Pittsburgh, PA
J. Tomko , Pittsburgh Development Center, University of Pittsburgh, Pittsburgh, PA
L. Houser , Pittsburgh Development Center, University of Pittsburgh, Pittsburgh, PA
G. Sackett , Psychology, Washington National Primate Research Center, Seattle, WA
L. Hewitson , Obstetrics, Gynecology and Reproductive Sciences, University of Pittsburgh, Pittsburgh, PA
Background:
Abnormal brainstem structure and function have been reported in children with autism. Opioid receptors play key roles in neuro-ontogeny, are present in brainstem nuclei, and may influence aspects of autism. Childhood vaccines are a possible causal factor in autism and while primates are used in pre-clinical vaccine safety testing, the recommended infant regimen (1994-1999) has not been tested.
Objectives:
The objective of this study was to compare brain stem volume and opioid binding in rhesus infants receiving the recommended infant vaccine regimen.
Methods:
Rhesus macaques were administered vaccines adjusted for age and thimerosal dose (exposed; N=13), or placebo (unexposed; N=3) from birth onwards. Brainstem volume was measured by quantitative MRI, and binding of the non-selective opioid antagonist [11C]diprenorphine (DPN) was measured by PET, at 2 (T1) and 4 (T2) months of age. Neonatal reflexes and sensorimotor responses were measured in standardized tests for 30 days.
Results:
Kaplan-Meier survival analyses revealed significant differences between exposed and unexposed animals, with delayed acquisition of root, suck, clasp hand, and clasp foot reflexes. Interaction models examined possible relationships between time-to-acquisition of reflexes, exposure, [3C]DPN binding, and volume. Statistically significant interactions between exposure and time-to–acquisition of reflex on overall levels of binding at T1 and T2 were observed for all 18 reflexes. For all but one (snout), this involved a mean increase in time-to-acquisition of the reflex for exposed animals. In each model there was also a significant interaction between exposure and MRI volume on overall binding.
Conclusions:
This animal model examines the neurological consequences of the childhood vaccine regimen. Functional and neuromorphometric brainstem anomalies were evident in vaccinated animals that may be relevant to some aspects of autism. The findings raise important safety issues while providing a potential animal model for examining aspects of causation and disease pathogenesis in acquired neurodevelopmental disorders.
Microarray Analysis of GI Tissue in a Macaque Model of the Effects of Infant Vaccination
Saturday, May 17, 2008
Champagne Terrace/Bordeaux (Novotel London West)
S. J. Walker , Institute for Regenerative Medicine, Wake Forest University Health Sciences, Winston-Salem, NC
E. K. Lobenhofer , Cogenics, a Division of Clinical Data
E. Klein , Division of Laboratory Animal Resources, University of Pittsburgh, Pittsburgh, PA
A. Wakefield , Thoughtful House Center for Children, Austin, TX
L. Hewitson , Obstetrics, Gynecology and Reproductive Sciences, University of Pittsburgh, Pittsburgh, PA
Background: There has been considerable debate regarding the question of an interaction between childhood vaccinations and adverse sequelae in the gastrointestinal tract, immune system, and central nervous system of some recipients. These systems, either singly or in combination, appear to be adversely affected in many ASD children. Although pre-clinical tests of individual vaccines routinely find the risk/benefit ratio to be low, previously there has not been a study to examine the effects of the comprehensive vaccination regime currently in use for infants.
Objectives: This study was designed to evaluate potential alterations in normal growth and development resulting from the vaccine regimen that was in use from 1994-1999. Specifically, this portion of the study was to compare the gene expression profiles obtained from gastrointestinal tissue from vaccinated and unvaccinated infants.
Methods: Infant male macaques were vaccinated (or given saline placebo) using the human vaccination schedule. Dosages and times of administration were adjusted for differences between macaques and humans. Biopsy tissue was collected from the animals at three time points: (1) 10 weeks [pre-MMR1], (2) 14 weeks [post-MMR1] and, (3) 12-15 months [at necropsy]. Whole genome microarray analysis was performed on RNA extracted from the GI tissue from 7 vaccinated and 2 unvaccinated animals at each of these 3 time points (27 samples total).
Results: Histopathological examination revealed that vaccinated animals exhibited progressively severe chronic active inflammation, whereas unexposed animals did not. Gene expression comparisons between the groups (vaccinated versus unvaccinated) revealed only 120 genes differentially expressed (fc >1.5; log ratio p<0.001) at 10 weeks, whereas there were 450 genes differentially expressed at 14 weeks, and 324 differentially expressed genes between the 2 groups at necropsy.
Conclusions: We have found many significant differences in the GI tissue gene expression profiles between vaccinated and unvaccinated animals. These differences will be presented and discussed.

David Gorski already dissected this stuff, way back in May 2008.  It's not new. What's interesting is that Wakefield's name was ditched. What's interesting is that Olmsted and Blaxill undoubtedly knew it wasn't new but packaged it that way.

Addendum:

And as Emily points out in the comments, she wrote about it nearly two years ago, as well.  Hmmm. I wonder what could be causing collective amnesia on the part of the AoAers? Did they cover it? It was in a newsletter from Thoughtful House around that time, too.

Full published article is here. (thanks Sullivan)

Safeminds 2008 abstract is here. (thanks Emily)

And lookie lookie: Age of Autism covered this NEW study back in 2008!

And the comments are about the same. I guess there's collective amnesia going on over there:


Absolutely extraordinary and stunning research - great job Andy and colleagues!!!
Posted by: Theresa Cedillo | May 17, 2008 at 09:15 AM

In the Garden




July in West Texas is a rough month in the garden. It's hotter than hell outside, even as early as eight in the morning, and it's one of the months that needs the most work done outside as the early summer flowers have gone to seed and are getting ugly as they brown up and die. The mosquitoes are miserable, too, especially in the evening dusk, right when it's finally cool enough to get out there and start pulling and cutting like mad.

It's just about a no-win situation. Some pockets of pretty still remain, like in the above picture, and other parts of the garden definitely show future promise, but huge swaths of the garden are in shambles and just not easy on the eyes.




(at least it's still got some flowers in the front of the mess)

It's a lot like parenting, in some ways. A lot. There are things about our children's behaviors that are breathtaking, absolutely gorgeous in a way that gets your heart right up there in your throat. There are things about your children where you can see the future promise lurking on the horizon, just waiting for the right amount of tending and coaxing. And then there are those areas where, my gods, there's just a ton of work to be done and the environmental conditions make it awfully hard to see progress.


Sometimes it's those messy patches that draw our attention and have our hearts in our stomachs, have us worried, have us thinking about how to handle it right now without getting overheated or eaten alive. Unfortunately, there are times where we have no choice but to wade in, despite the heat and the critters waiting to feast on us (in this case the negative emotions like fear, worry, anger, doubt), and do our best to clean up the garden of promise and potential that our children are. We know that if we don't, no one else will bother. Not their garden. Not their problem.


We work, most of us, incredibly long and hard hours to help our children function to the best of their ability while also working to make the world an easier place for them to be in. We wade in where others will not. And some days we end the day knowing our actions made a difference, made things a little better. Other days we're just glad we made it to the end of the day still standing.




7/13/2010

Well There You Go: Handley Reveals All

"We don't trust the FDA or the CDC. We don't trust you. We don't trust most doctors. We only trust each other," he said. --  JB Handley in Trine Tsouderos's article on Boyd Haley
God help the kids of these parents then. I've read the yahoo groups that think autism is mercury poisoning. They may love their children completely, but their desperation often gets in the way of rational decisions. They use their children as guinea pigs and are morally outraged that anyone would question their use of mining chelators, nicotine patches, oxytocin spray, HBOT, and the rest of the list we all know now too well.

Love and devotion are absolutely no guarantee that parents will make smart decisions when it comes to their children's care, especially if there are quacks out there promising to heal and recover their children. Doctors far too often don't have neat, tidy answers that will resolve the very real and serious issues many of our children on the spectrum face. And just as often, they don't handle communicating with parents very well. DAN! doctors and quacks, on the other hand, have a string of ready to try supplements and therapies, often for sale in their office or on their website, with a string of scientific jargon, acronyms, and complicated cellular functions that their special supplements are designed to act on. If only you, the parent, are willing to spend the money, and then the time, to give the child these supplements at specific times. If your child doesn't respond, it's because you weren't devoted enough, didn't follow it precisely or for long enough, or didn't intervene soon enough. 

There is no place for emotionalism and the gut in the medical decisions we make for our children. And there is absolutely no room for thinking we have all the answers or that any doctor out there does. What we have are reason and logic to guide us in making the best possible decisions we can for our children based on real information, not the magical claims by con artists.

There should be no room for conspiracy theories, either, and the belief that the pharmaceutical companies are out to get people, while never considering that the nutraceutical companies and small start ups offering powerful antioxidants that haven't been investigated or approved by the FDA are every bit as much out to make a buck, but with far less oversight. 

Yes, pharmaceutical companies screw up, and they even cover up or attempt to, but the reality is that the weight of evidence accumulates and it comes out that Phen-Fen, Vioxx, and Avandia have real problems. Because the scientific method and dedicated scientists accumulate the data. 

Parents are looking for a sure thing, and while it's understandable to want certainty and the hope that is offered when someone out there on the internet promises recovery, it's no excuse for running with one's gut instead of asking the hard questions.

Rational people would look at Haley's claims and ask: how does he know? What proof has he offered? Oh, he's a nice man and he wants to help. Well, maybe he is a nice man. Maybe he does want to help. But the reality is he's offering a pricy product that has not undergone rigorous safety testing, does not have any demonstrated efficacy at reducing autistic symptoms, and has no logical mechanism for suggesting it would.

To sprinkle it on  your children's breakfast cereal for years just because you've met him and he's nice? That's complete gut. And flat out risky. 

We have an obligation to our children to do the best we can for THEM. To me, that means asking hard questions, being willing to accept uncertainty, and to make the most informed decisions we can about their care and the treatment and therapies they receive. It means that we shunt our fear, our emotions, and our wants aside and make decisions based on the facts at hand. We don't subject them to untested treatments by startup companies and we admit when it comes out that we've been using a MINING CHELATOR on our children that we may have made a mistake and we STOP using it. We don't post that, damn, all these news articles and the FDA investigating proves it must be great shit and we'd better buy it up before it's gone. After all, the FDA wouldn't be trying to shut Haley down if it wasn't working! There's a reason I've written that AoA is bizarro world, and I'll admit I find it fascinating to know that the powers that be over there are aware of that so that they turned the phrase around on Countering (not that they mentioned this site by name).

Tested, proven safe, proven effective. Those are the treatments we have a moral obligation to provide for our children. We abuse our role as our children's guardians and protectors when we somehow believe that vaccines haven't undergone enough testing and aren't safe, and yet somehow think that all the supplements, powders, pills, and creams that have undergone no testing and are not regulated are the absolute right thing to do for our children.

People who rally to Haley's support have lost their way. Handley showed us today in Tsouderos's column just how lost they are.






Addendum: Other articles on OSR#1


Neurodiversity:
Recently:
OSR: Fuel For Thought · 2010-07-07 16:00
OSR: A Bevy Of Adverse Events · 2010-07-12 07:15
OSR: The Littlest Consumers · 2010-07-14 07:15
From the beginning:
Haley’s Chelator: For Cats Or For Kids? (April 26, 2008)
A Fine White Powder (August 1, 2008)
The Industrial Treatment (August 8, 2008)
An Inquiry Emerges (August 14, 2008)
FDA To Haley: OSR#1 A Misbranded, Mislabeled, Unsafe Drug (June 24, 2010)