I am embarrassed to say that I was unaware of Autistic Pride Day (planned for June 18, 2008) until an About.com editor asked me about it. Needless to say, I scurried around the web to find out more. From what I can see, it's a celebratory day created by Aspies for Freedom, and in the past (again, based on what I'm reading), it looks like it's mostly been celebrated in the UK.

Here's how it's described in Wikipedia:

Autistic Pride Day is a celebration of the neurodiversity of people on the autism spectrum on June 18 each year. Autistic pride is pride in autism, about shifting views of autism from "disease" to "difference". Autistic pride emphasises the innate potential in all human phenotypic expressions and celebrates the diversity various neurological types express.

Autistic pride asserts that autistic people are not sick; rather, they have a unique set of characteristics that provide them many rewards and challenges, not unlike their non-autistic peers. Researchers and people with high-functioning autism have contributed to a shift in attitudes away from the notion that autism is a deviation from the norm that must be treated or cured, and towards the view that AS is a difference rather than a disability.

New Scientist magazine released an article entitled "Autistic and proud" on the first Autistic Pride Day that discussed the idea.

Autistic Pride day is an Aspies for Freedom initiative, an autism rights group that aims to educate the general public with initiatives to end ignorance of the issues involving the autistic community.

So... for those readers out there who have participated in Autistic Pride Day - or who plan to take part this year - did Wikipedia get it right? And... are there plans in place for 2008? Anything you'd care to announce here and now?

Thanks so much for your help!

What causes autism?

There are a few theories.

In addition to the more prominent possibilities - genetics, vaccines, and environmental heavy metals - there seem to be an incredible range of potential culprits. In the past two years I've heard and/or read that autism could be caused by... Prenatal ultrasound. Pitocin. Tuna. Food dyes. Wifi. Cable television. Cell phones. Plastic baby bottles. Pesticides. Alcohol. Sleep apnea. Airplane exhaust. And that's just a start.

Today, a major news story appears to associate autism with... pet shampoo. According to this story on the ABC News website:

A preliminary study out of California might have uncovered at least one chemical worthy of investigation: pyrenthrin, a type of pesticide found in common products, from pet shampoos to household bug killers.

Mothers of more than 500 young children (some autistic, some not) participated in the study, reporting long lists of products they remembered using from a few months before conception until their child turned 1.

Mothers of the 138 children with autism were twice as likely to report using pet shampoos and other household products containing pyrenthrins than other mothers.

But while the findings in the study seem strong, lead author Irva Hertz-Picciotto, professor in the Department of Public Health Sciences at University of California, Davis, and other autism experts agree that there is a lot of work left to make sure pyrenthrin isn't a red herring [bold mine].

Just to clarify: this is a preliminary study. This preliminary study has not been replicated. This preliminary study shows an ASSOCIATION between pyrenthrin and autism - not a causal connection. That means that people who shampooed their dogs with pyrenthrin may be at higher risk for reasons completely unrelated to the pyrenthrin. Or it may be that they really aren't at higher risk at all, but just appear to be because of an oddity related to this particular study.

Does that mean parents should stop shampooing their dogs? If I had a choice, I'd select a less chemically potent option for my pup's pelt... and I'd certainly avoid using pesticides on objects likely to be handled by my toddler. But surely most parents are aware that pesticides are, in fact, poison - and that the warnings on the back of the spray can mean what they say!

Meanwhile, though, let's hope that we don't have to add yet another item to the list of "could cause autism" possibles. At a certain point, I worry that we'll wind up having to live on nothing but roots, berries and pure spring water ... and communicate with cans and string!

Dr. Bernadine Healy is an important person. The first woman to head the NIH, her word carries some weight. For the past few days, blogs have been buzzing about her apparent support for the process of digging into a possible connection between vaccines and autism. To be honest, I really thought her comments must have been taken out of context or somehow misconstrued. This morning, though, I saw Dr. Sanjay Gupta's blog on CNN.com - and its bemused tone (and accompanying video) made me realize that Dr. Healy is very much for real. It also seems clear from the tone of the blog that Dr. Gupta is as surprised as anyone at this turn of events:

Healy went on to say that many in the scientific world have been quick to dismiss the concerns of parents and have not conducted the necessary studies of causation to definitively rule out a vaccine/autism link. Healy’s comments have become a lightning rod in the medical community - with an infectious disease expert with the American Academy of Pediatrics calling CNN twice yesterday to express concern parents will misconstrue Healy’s comments and stop get their kids vaccinated - and that vaccines save lives.

Wow. We had to take a moment at the summit, where I reminded the doctor that her comments seemed to fly in the face of most of her former colleagues at the NIH, and the CDC, FDA, and AAP for that matter. She is sticking to her guns, as is the neurologist father of Hannah Poling, who believes when the vaccine court awarded his daughter Hannah compensation, it was a milestone in this debate. Neither are anti-vaccine, and both are arguably legitimate scientists

In the video, Healy argues that even a relatively tiny number of cases - maybe 1,000 in 1,000,000,000 - of vaccine injury leading to autism certainly merits investigation.

What's your take on Healy's stand? Is she muddying the waters further? Or providing some much-needed clarity in a world of uncertainty?

The diagnostic criteria for autism don't include physical symptoms. Yet in reading through comments and blogs on the web, it seemed to me that an awful lot of parents are spending an awful lot of time dealing with symptoms ranging from bowel issues to seizures.

Last week, I created a poll to learn a little more about this issue. In it, I asked parents whether their children with autism have physical symptoms related to their autism. I also asked whether children had "regressive" autism (that is, developed normally and then lost skills) - and did my best to separate sleep, anxiety and behavior-based issues from physical illness.

So far (as of 2:00 EST on Tuesday, May 12), there are 218 responses. Surprisingly, to me, only 8% of those who responded said their child with autism had physical symptoms apparently caused by or directly related to their autism. Only 5% said their child with regressive autism had physical symptoms.

63% of parents said their children with autism are generally healthy - though 31% note that their healthy children do have problems with sleeping.

Perhaps less surprising, 26% of parents said their children have developed health and anxiety problems as a result of behaviors related to their autism. For example, as some parents have noted, people with autism may be more likely to mouth dirty objects, engage in self-injurious behaviors, or take unnecessary physical risks (e.g., running out into traffic). People with autism are also, of course, more likely to be anxious in typical social situations, or to feel anxious as a result of ordinary sensory input.

Of course, I repeat, this is NOT a scientific study. Responders are self-selected, and have the option of responding with more than one answer - and of responding more than once. Still, it seems worth noting that the vast majority of responders feel their kids with autism are basically health, if sleep-deprived.

Do these findings correspond with your experience? What's your experience with autism and illness?

Last year, the Vaccine Court (a part of the Federal Court of Appeals specifically set up to manage cases of vaccine damage) began hearing a series of what will be nine test cases focused on the question "do vaccines cause autism?" These nine test cases will provide a basis for handling nearly 5,000 similar cases brought by parents who claim that their child's autism developed as a result of one or more vaccines.

The court heard three such cases last year - but still has made no decisions. Meanwhile, the high profile case of Hannah Poling was settled out of court - on the basis that a very large number of vaccines (9) administered in one day set off an underlying mitchondrial disorder, resulting in "autism-like" symptoms.

According to today's Associated Press story:

Two 10-year-old boys from Portland, Ore., will serve as test cases to determine whether many of the children and their families should be compensated. Attorneys for the boys will attempt to show the boys were happy, healthy and developing normally — but, after being exposed to vaccines with thimerosal, they began to regress.

Thimerosal has been removed in recent years from standard childhood vaccines, except flu vaccines that are not packaged in single-doses. The CDC says single-dose flu shots currently are available only in limited quantities. In 2004, a committee with the Institute of Medicine concluded there was no credible evidence that vaccines containing thimerosal caused autism.

Overall, nearly 4,900 families have filed claims with the U.S. Court of Claims alleging that vaccines caused autism and other neurological problems in their children. Lawyers for the families are presenting three different theories of how vaccines caused autism.

The Office of Special Masters of the claims court has instructed the plaintiffs to designate three test cases for each of the three theories — nine cases in all — and has assigned three special masters to handle the cases. Three cases in the first category were heard last year, but no decisions have been reached.

The two cases beginning Monday are among the three that focus on the second theory of causation: that thimerosal-containing vaccines alone cause autism. The plaintiff in the third case originally scheduled for hearing this month has withdrawn and lawyers and court officials are working to agree on substitute case.

Hearings in the test cases for the third theory of causation are scheduled in mid-September.

Lawyers for the petitioning families in the cases being heard this month say they will present evidence that injections with thimerosal deposit a form of mercury in the brain. That mercury excites certain brain cells that stay chronically activated trying to get rid of the intrusion.

"In some kids, there's enough of it that it sets off this chronic neuroinflammatory pattern that can lead to regressive autism," said attorney Mike Williams.

In the end, the families' attorneys hope to convince the special master hearing their case that thimerosal belongs on the list of causes for the inflammation that leads to regressive autism.

To win, the attorneys for the two boys, William Mead and Jordan King, will have to show that it's more likely than not that the vaccine actually caused the injury.

The question of whether vaccines are responsible for an autism diagnosis has created huge controversy and strong feelings on both sides. While activist groups like Generation Rescue are dedicated to proving a connection between vaccines and autism, the medical establishment is absolutely certain that no such connection exists.

How fierce is the controversy? The AP article goes on to cite one of the most sarcastically nasty comments I've ever seen in an article from the mainstream press: "I think that what's so endearing to me about the anti-vaccine people, is they're perfectly willing to go from one hypothesis to the next without a backward glance," said Dr. Paul Offit, director of the Vaccine Education Center at the Children's Hospital of Philadelphia."

Note: Interested readers may want to read through a very informative FAQ about the legal aspects of the vaccine trials, available at the Age of Autism website.

What's it like to be the mom of a child with autism? It can be more than stressful; beyond frustrating. But there are also those amazing moments that make us moms realize just how important our role really is.

In 2006, I asked families to tell me what's best about their child with autism. Here are just a few of their responses. None of these families sees autism through rose-colored glasses -- yet each feels that autism has added greatly to their lives.

As you read these notes, you may be surprised that families use words like "joy," "affection," and humor to describe their autistic loved ones. These are qualities some experts claim are lacking in people with autism. Maybe some experts are wrong!

1. Jalen's Smile

Everyone loves Jalen’s smile. It is so beautiful, and it can make you temporarily forget all that’s wrong in the world! He also is very earnest in his art projects — he’s now 13, and they are pretty much preschool/young elementary school type projects — but I appreciate how good he feels about doing them. I also like the way he’s developed — over the years, he’s becoming much more caring.

by Cynthia Whitfield — December 7, 2006

2. Noah's Joy

We love how Noah (4) wakes up every single morning with a smile on his face, ready to play and learn. He is a happy and sweet soul with a laugh that comes from his toes. It is a joy to hear his voice as he learns to speak. He has **always” been a joy to us– our baby, youngest of 4, special– as they all are!

by Ali and Pete — December 8, 2006

3. Julian's Christmas Show

Julian is just 4 years old. Yesterday, we attended his second Christmas program at his preschool for special needs. The gym was dark and it was time for his class to enter the stage. In the middle of all the fake snow being thrown, the singing and room full of parents -- he panned the room and found my face. At that moment, I wasn’t paying attention to any other cute thing going on but that beautiful smile that emerged when he focused only on me. I guess if there was an emergency evacuation, we would still be sitting there in both of our spots! I walked out of that building being the luckiest mom in the whole world!

by Donna Keith — December 8, 2006

4. Finding the Joy in Every Moment

When our kiddo rode his tricycle for the first time, we went nuts. His first words at 2 and a half were the best sounds ever. When my youngest pointed for the first time at 14 months, I went out of my mind! See, for me, all those little “normal” things, things other parents take for granted every single day, are the highlights of my life. ... That’s what I love about my autistic kids, they make me realize the joy in every single little moment, in every single little action in their life… and mine.

by Kari — December 8, 2006

5. A Brother's Loving Heart

My brother Matthew is 9 years old. What I love the most about my brother is that he is different and unique but has the biggest heart. He is not shy, he loves to hug people and he always has a smile. When he comes home, the first thing that comes to his mind is ‘Meagan, where are you??’ and that makes me feel like he will never forget his big sister. The smile on his face reminds me that he is no different and I just love him the way he is!

by Meagan McIntosh

6. Jeffrey Brings Down the House

14-year-old Jeffrey wanted to do the school talent show; he had been taking piano lessons for almost 2 years. He had to audition and was accepted. He attended the rehearsals and did a wonderful job at the actual talent show - he played “Edelweiss”. When he finished playing, he was grinning ear to ear, the audience gave a grand round of applause and you could just see how proud Jeffrey was of himself! People say he is doing so well because he has such loving parents who help him so much. But I believe Jeffrey is showing us the way! I think of him as my shining star -- leading me through the confusing maze of autism!

by Nancy West — December 10, 2006

7. Taylor's Faith

Taylor is 10 and is moderately autistic. At 10, he is past the age of being just “cute” and growing into such a beautiful young man. He NEVER lies (says he’s no good at it, why try), is honest and forthright in everything he does and has a close, personal relationship with God. He does not have faith. He has something so much more. He KNOWS and finds comfort in his relationship with God. God sits in the room with him. Jesus is by his side when he sleeps. He has strengthened my faith by his own.

by Lesa Crowe — December 12, 2006

8. John's Commitment to Justice

My son, John is 15 and has a PDD. He is honest and funny and a true automotive expert! He is very intelligent in an IQ-test sort of way, but struggles with the mechanics of even the most basic social interactions. One of the things I love best about him is his passionate commitment to justice. He has so much to offer the world, including the realization that opening our hearts to those who seem “different” can enlarge and expand all of us.

by Denise Gribbin — December 14, 2006

9. What Sam Has Taught Us

Sam, my 11-year-old grandson, has opened so many eyes and hearts with his quick smile and insatiable desire to know more….more about his ever expanding world. He has taught us about snakes, trains, airplanes, sit-coms, Avatar, and what a family is. To Sam a family is always a breath away from planning another celebration…no holiday or event needed…just celebrate being!

As Sam's ‘Granny Person’ (his name for me) I treasure every hug, every visit, every time he says ”I need to more about that” and I know I can actually tell him more or direct him to sources. Sam uses different eyes to see this world and has made me a better Granny person for it! Amazement fills my world filtered thru Sam’s eyes.

by Janet Hoover — December 15, 2006

10. Darbie's Surprising Strengths

My 12-year-old daughter Darbie never ceases to amaze us. When we watched her become a Black Belt at TaeKwonDo, then teach a group of 100 Girl Scouts aged 5-14 basic self-defense as part of a Bronze Award (the highest for her age group), it was, to us, a miracle. She sees the good in everyone, and yet is totally aware that there are times when others are not so nice. We worry that when she finally grows up she won’t be able to take care of herself, but then she goes and proves us wrong by showing incredible clarity and maturity! It’s that ability to surprise us with her unique, and often unusually clear, insights that we love the most. That and her ability to show her love for you when you least expect it, but most need it.

by DarBecca

HAPPY MOTHER'S DAY!

As the UK plans to embark on its epic count of adults with autism, bloggers like David Kirby ask "97% of All Autism Cases Went Undected - Until Now?" Kirby, of course, takes the perspective that there is, indeed an autism epidemic. Changes in diagnostic criteria and a major media blitz to increase autism awareness, he says, can't possibly explain the huge surge in diagnoses over the past ten - twelve years.

But Kirby and those who agree with him have their detractors. Take anthropologist Richard Grinker, whose book Unstrange Minds makes the case that the apparent epidemic is - in essence - a boondoggle. Grinker is joined by a number of adults with autism (bloggers Alex Plank and Rich Schull to name two) who make the case that people with autistic qualities have been a part of our culture since culture began. While their differences were not diagnosed as "autism," some argue, luminaries like Mozart and Einstein would receive autism spectrum diagnoses today.

So... where do you stand on this question? IS there an autism epidemic? Take the poll!

Do you know a mom who deserves a special tribute for mother's day? Perhaps she's worked tirelessly to ensure that her child with autism gets the therapy and support he needs. Maybe she's overcome tremendous odds to help her child succeed. Or it could be that she's just a loving, caring mom of a child wtih autism.

If you know such a mom - I hope you'll take a moment to write about her right here. That way, others will have a chance to know her - and she'll have a chance to know how you feel.

It's a national disaster. Buildings are burning - or an epidemic is raging. Medical and food supplies are dwindling. Patients are lined up at the doors of the hospital. One is 85, with dementia. One is a 35 year old mother. Who gets treated? The answer seems obvious: the younger person with responsibilities of her own should surely get priority, right?

Take it a step further. The two patients are both 35. They're both mothers. One has advanced cancer. The other is healthy. Who gets treated? Even in this case, the answer may be relatively obvious.

What if they're both 35. Both healthy. Neither have children. One has a mental illness. The other doesn't. Not so easy now, perhaps? What if they're both children - and one has autism?

Shannon Johnson, the creator of the Foggy Rock online autism community pointed me in the direction of an article on CNN.com which outlines who should get treatment in the event of a pandemic or national disaster. Here's the gist:

To prepare, hospitals should designate a triage team with the Godlike task of deciding who will and who won't get lifesaving care, the task force wrote. Those out of luck are the people at high risk of death and a slim chance of long-term survival. But the recommendations get much more specific, and include:

• People older than 85.
• Those with severe trauma, which could include critical injuries from car crashes and shootings.
• Severely burned patients older than 60.
• Those with severe mental impairment, which could include advanced Alzheimer's disease.
• Those with a severe chronic disease, such as advanced heart failure, lung disease or poorly controlled diabetes.

Dr. Kevin Yeskey, director of the preparedness and emergency operations office at the Department of Health and Human Services, was on the task force. He said the report would be among many the agency reviews as part of preparedness efforts.

Public health law expert Lawrence Gostin of Georgetown University called the report an important initiative but also "a political minefield and a legal minefield."

The recommendations would probably violate federal laws against age discrimination and disability discrimination, said Gostin, who was not on the task force.

If followed to a tee, such rules could exclude care for the poorest, most disadvantaged citizens who suffer disproportionately from chronic disease and disability, he said. While health care rationing will be necessary in a mass disaster, "there are some real ethical concerns here."

James Bentley, a senior vice president at American Hospital Association, said the report will give guidance to hospitals in shaping their own preparedness plans even if they don't follow all the suggestions.

Shannon, reading this article, asks:

As a mother, thinking that my impaired child with autism would be denied treatment because of his disability is just appalling. I understand the need for public health discussions, but am still left feeling like I just been hit with a fist in the gut.....What percentage of our population would this affect? How many are children? What happens to those not treated or allowed medical care? Where do they go? Are they then banned from school and public places?......Are they quarantined away from others? Will families be forced to choose between caring for their disabled child, or seeking treatment for their other children or family members? I could be over-reacting, but I think a discussion regarding the value of the disabled to society is long overdue.

So I'm inviting you to join in this discussion. In the best of all worlds, every individual is supported and valued - regardless of age, ability, intelligence or other defining characteristic. But in the worst of all worlds, when basic medical treatment, food, and shelter are limited - is it ethical to exclude the old, sick or disabled in order to provide for the young, well, and able? Where do you stand on this complex issue?

How many adults in the UK are diagnosable on the autism spectrum? A reliable answer to this question would be extraordinarily useful. It would put to rest the question "is there really an autism epidemic?" It could even provide important insights into exactly when the numbers of people with autism really started to rise - and help us to understand whether there is a direct connection between a "true" rise in autism and various environmental and medical changes.

In short, this is certainly a question worth answering. But information available so far begs the question "how the heck will researchers manage to get the answer?" According to BBC News:

For the first time the government is to calculate the number of adults with autism in England.

Announcing the £500,000 project, Care Services Minister Ivan Lewis said autistic adults are too often abandoned by health and social services.

The National Autistic Society welcomed the move, saying it hopes it will mark a turning point in the way the needs of adults with autism are met.

The statistics will be used to form a national strategy.

The challenge for the researchers will be to make sure people whose autism has not yet been diagnosed are not overlooked.

Apparently, the plan is to focus on a sample of the population, and extrapolate statistics based on what's found. But - will every adult in the sample be tested for autism? What kinds of tests will be used? How will so many adults be convinced to TAKE such tests (unless they're already concerned that they are diagnosable)? Will the outcomes provide information on various subtypes of autism (e.g., X number have Asperger syndrome; Y number have PDD-NOS, and so forth)?

What's your feeling about this project? Does it seem doable? Is it worthwhile? Will it make a significant difference in our understanding of autism?