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Anne Dachel

Dachel Media Review: False "Undiagnosis" To Mimic Drop?

Online newsBy Anne Dachel

Read Anne's commentary and view the links after the jump.

Jan 23, 2014, Worcester (MA) Telegram: Autistic students affecting Worcester school budget

Jan 23, 2014, Forbes: Big Data Crushes Anti-Vaccination Movement

Jan 23, 2014, Philly.com: New Diagnosis Rules Could Lead to Drop in Autism Numbers

Jan 23, 2014, Fox News: Number of kids with autism may drop under new criteria

Continue reading "Dachel Media Review: False "Undiagnosis" To Mimic Drop?" »

Current Affairs, Nightmares

Autism Action Network Avonte Found: Call for Independent Investigations

Avonte memorial

From our friends at the Autism Action Network.
 
The worst fears of many were confirmed with the positive identification of remains found washed up on the Queens’ waterfront as those of Avonte Oquendo, a 14-year old boy with autism who was allowed to wander away from the Riverview School in Long Island City on October 4, 2013.

 Avonte was non-verbal and assigned to a classroom of six students with one teacher and an aide, which In New York would indicate it is a self-contained class for the most impacted students. According to published accounts, Avonte wandered away from his classmates and aide or aides in the school cafeteria, he then was challenged but not stopped by a school security worker as he left the school. School personnel did not determine that Avonte was missing for at least an hour and then they waited another hour before contacting the police department.
 
We are calling for a full investigation by independent entities into the multiple failures of the New York City Schools that lead to Avonte’s death. If Avonte’s mother had allowed Avonte to wander away from home she would at the very least be the subject of a child endangerment investigation. Therefore, we are calling upon Queens County District Attorney Richard Brown to launch an investigation into the possibility of criminal negligence on the part of New York City employees responsible for Avonte’s safety.
 
 Richard Brown
 Queens County District Attorney
 12501 Queens Blvd.
 Jamaica, NY 11415
 (718) 286-6300
 
The New York City Council does not have much power but it can launch oversight hearings.

Continue reading "Autism Action Network Avonte Found: Call for Independent Investigations" »

Anne Dachel

Dachel Media Review: Comics Book, Autoimmune, DSM V

Online newsBy Anne Dachel

Read Anne's commentary and view the links after the jump.

Jan 22, 2014, GreaterGoodMovie.org: Vaccinations: The Smoking Gun in Autoimmune Disease and Autism?

Jan 22, 2014, KPIC CBS 4 Roseburg, OR: Children need immunizations by Feb. 19 to stay in school

Jan 22, 2014, San Jose Mercury News: What happens when autistic children become adults

Jan 22, 2014, York (PA) Dispatch: First issue of autism comic book released in York stores

Jan 22, 2014, WPTV Boca Raton, FL: Boca Raton facility provides safety net for adults on autism spectrum

Jan 22, 2014, Philly.com:  New Diagnosis Rules Could Lead to Drop in Autism Numbers

Jan 22, 2014, Los Angeles Times: More on the unsavory history of the vaccine-autism 'link'

Jan 21, 2014, AutismDailyNewscast.com: Emma Nicholson talks about her autistic son Ben and how she taught him to swear

Continue reading "Dachel Media Review: Comics Book, Autoimmune, DSM V" »

Current Affairs

Take Time To Dream and Live

James FryeBy Wendy Frye

We were well into our parenting years the first time we took a real break from our "unique" routine. Our way of life, with autism in the home....well, lets just say it was a rarity to move in a group LET alone consider just WHAT it would take to achieve one of America's finest family pastimes - taking a vacation.

Our eldest son, diagnosed on the autism spectrum at the age of 3 1/2 years old, was making measurable progress. He found his voice in his 8th year - and was being released from physical and occupational therapies at school. Now, I don't think I need to detail the herculean efforts poured into this young man to get to this place - or feel bad about the $90,000 outlay. We took personal debt (aka credit cards) to a whole different level. But Man! Oh! Man! we had finally made it to a positive, measurable milestone. What a perfect time to pause, take a honeymoon from all the therapies per se, and quickly celebrate a little bit of progress.


It was our last purchase made on the last line of credit we had available - a trip for four to Disneyland. And was it ever worth every single penny PLUS interest, fees and the stamps to mail in payments! Well before Mickey Mouse got pissed and quit handing out VIP passes to families who could use the extra time and assistance, we were able to secure that very golden ticket to fast-tracking the park attractions. While I had to physically force my eldest son to stay with me on the first ride (yep, that was me manhandling my son - don't judge unless you live the life, friend) soon after that, he was hooked. We finished 16 attractions that first day, going on to have a delightful dinner in the French Quarter of the park and ultimately enjoying the best vacation of our lives.

Continue reading "Take Time To Dream and Live" »

Anne Dachel

Dachel Media Review: Older Dads, New Clinic

Online newsBy Anne Dachel

Read Anne's comments and view the links after the jump.

Jan 22, 2014, MLive.com: New autism clinic gives parents fresh, closer treatment option in Genesee County

Jan 22, 2014, Courier-Mail (Australia): Men in their 40s more likely to have children with mental disorders as biological clocks are ticking

Jan 21, 2014, Fusion.net:  Bill Gates on Developing a Better (and Thinner) Condom

Continue reading "Dachel Media Review: Older Dads, New Clinic" »

Cathy Jameson, Nightmares

Rest In Peace Avonte Oquendo

Avonte memorial
Managing Editor's Note: Yesterday a news alert came in - the remains found in NY had been positively identified as Avonte Oquendo, missing 14 year old with autism who ran out of his school unsupervised (but not unseen) by staff.  We've been praying for his return since October 4, when he vanished into thin air - not an easy feat in congested Queens, NY.  Most of us whispered under our breath, "Water, go to the water, he went to the water."  Well, today we have his return - not what we wanted - but as a Mother, I think there must be some comfort in being able to bury your child and know you can still watch over him, even in death. To the Oquendo family, our heartfelt condolences. There but for the grace of God and a stroke of luck go most of us and our precious children.  RIP, Avonte.  Love, Kim  Send condolence cards to:

The Perecman Firm
Attn: The Oquendo Family
250 West 57th Street
4th Floor
New York, NY 10107

By Cathy Jameson

Last week, worry gripped my heart as I read that body parts discovered off the shore of the East River appeared to match that of a missing NYC teenager.  Missing since October 4, 2013, Avonte Oquendo wandered from his school.  Accusations and assumptions about how he was able to leave unsupervised are still being investigated.  Answers from that investigation may take time, but after months of wondering where Avonte wandered can finally be answered.  Several days after the grim discovery of bones and some clothing items, DNA positively identified the remains as 14-year old Avonte.  Words cannot express how sad I am for his family.

As the mother of a child with autism who is prone to wander, the possibility of a fatal outcome because of wandering is never far from my mind.  Ronan has gotten away from us before, but has been recovered quickly and with a far less search and rescue endeavor as Avonte’s search required.  Because I know the fear that comes with this sort of situation, each time I hear stories of children with autism wandering, I try to pray.  For month, I prayed for Avonte and his family as did many of us.  My prayers changed Wednesday.  Tears and sadness accompanied them.  The more overcome I was, I stopped praying.  I just couldn’t say any.  The reality of autism and of this devastating situation has become far too common and more than I could bear.

Autism affects a great many.  Autism can change a life, and sometimes in a way that is anything but positive.  Autism and wandering is not uncommon.  Autism is difficult, costly and consuming.  Autism can bring a family to its knees in a moment’s notice.  And what was confirmed again this week, autism can be deadly.

Continue reading "Rest In Peace Avonte Oquendo" »

Anne Dachel

Dachel Media Review: Attacking Vaccine Safety Advocates (Again)

Online newsBy Anne Dachel

Read Anne's comments and view the links after the jump.

Jan 20, 2014, Kennewick, WA Tri-City Herald:  Top 5 fears about vaccines (and how to rest easier)

Jan 20, 2014, Journal News Westchester County NY: Autism cause brings out area's best

Jan 20, 2014, Los Angeles Times: The toll of the anti-vaccination movement, in one devastating graphic

Continue reading "Dachel Media Review: Attacking Vaccine Safety Advocates (Again)" »

Teresa Conrick

Dear Autism and PANDAS/PANS Researchers - Listen To The Parents

Listen_to_me_by_rachellove147-d34d13dBy Teresa Conrick

My daughter, Megan, born in 1993, has had a diagnosis of autism since 1995.  Throughout the years, Megan has suffered from perpetual infections. As a young child, she had chronic ear infections.  She was put on antibiotics but never probiotics and back then, I was not aware of that very important connection.  She also was bedridden numerous times, for days with mysterious viral infections and fevers, rashes, and also gastrointestinal distress.  Diarrhea and constipation then took over with blowout enuretic episodes.  In 2000, her behavior began to escalate. Biting, screaming, breaking glass on the hard floors and pouring liquids out on any carpet she could find.  Odd, perseverative and destructive behaviors became the norm. Doctors constantly told me, “it was her autism” causing the behaviors but they were wrong. Stool testing, done by a doctor who was seeing other children then with similar issues and an autism diagnosis, revealed that Meg had a painful, protozoan parasite, Giardia lamblia, which colonizes and reproduces in the small intestine.  She also had another persistent parasite, Blatocystis hominis, as well as chronic fungal infections from Candida albicans.  It was also discovered that Meg tested intolerant to gluten and casein.

It took eighteen months to clear these infections – and those behaviors. Tears, prayers and hope were my sanity as I watched often helplessly as Meg led a life of suffering. I even remember getting a call from the Department of Public Health, inquiring how and when Meg began to have symptoms of this long-lasting Giardia, as if I had somehow ignored her plight. She was on prescriptions -Nystatin for the yeast and Flagyl (Metronidazole) for months to kill those microbial infections. I put her on a gluten and casein free diet, too.  As the years marched by, we would be revisiting Flagyl for her numerous Clostridium infections.  As soon as one infection seemed to be finally dissipating, another would take its place.

In 2007, Megan began to flush all kinds of things down the toilet – toothbrushes, shampoo caps, toys – whatever would make its way into that curious hole.  Calling the plumber and doling out cash seemed to be happening more and more, the worst being for a small rubber ball that perfectly made its way through the toilet odyssey only to be lodged in the pipe in the hallway wall.  The plumbers took mercy on me by finally introducing me to my very own “snake” thereby saving me hundreds of precious dollars that were needed more for biomedical treatments. Yes, this behavior was also related to infections.  It seemed that each time Meg would begin this ritual of obsessive flushing, she would test positive for Streptococcus infection.  Then began the odd, body tics; dilated pupils; urinary accidents; vocal tics and not wanting to walk through the doorway of her bedroom.  Eating became less and less and she wanted to wear sunglasses all day and night.  What stopped this – antibiotics AND probiotics– but, permanent removal of these devilish bugs and parasites would prove to be the journey we continue to travel. As puberty hit, hormones began to ramp up these behaviors and then grand mal seizures began. 

Since first writing about Megan and PANDAS, I have had so many parents contact me about their children.  Example, a good friend who cares for her grandson, also with an autism diagnosis, began to see new and increasing behaviors that were concerning.  Some of those behaviors were beginning to happen at school and in places where people do not understand the connections between microbial infections and negative behaviors.  Obsessive questioning about rabbis; church bells; long rages; dilated pupils; some talk of “what if” harm to others; wandering behaviors and frequent body tics in his sleep. Armed with a list of labs that I emailed to her, she was able to get some testing done and the evidence was clear – infections were running rampant in this teen:

Continue reading "Dear Autism and PANDAS/PANS Researchers - Listen To The Parents" »

Current Affairs

Part 3--Regressive Autism---a New Hypothesis to End an Enigma?

Hypothesis
Read Part 1 and Part 2 of this series.                                                          

By Bill Welsh

“First of all they ignore you,
 then they ridicule you
 then they fight you
and then you win"

Ghandi.

It is important to remind readers that this series of articles is based on a ‘hypothesis’---a theory. It was made clear in the first episode that this is not a criticism of any earlier hypotheses. So please read the 3 episodes in as neutral a manner as you can, then discuss.

I will summarise the two previous articles and respond to some of the interesting points raised.

It is proposed that the role of auditory processing disruption should be given closer consideration as a material factor in the development of autistic symptoms. It is also proposed that a vaccine contaminant, namely Mycoplasma fermentans, an undesirable by- product of the cell-line technology used in some vaccine manufacturing processes, may be directly responsible for many of the symptoms commonly seen in regressive autistic children. This would include not only auditory processing problems but also chronic gastritis.  (It has been claimed elsewhere that 6% of commercial vaccines are contaminated). Mycoplasma’s opportunistic nature and affinity to the cilia, the hair like structures that extend from nearly all mammalian cells including the cilia containing areas of the inner ear, G.I tract, the eyes’ photoreceptors, and central nervous system would explain a great deal of what is articulated by parents when describing their child’s regression.

 Mycoplasma fermentans is a bacterial pathogen and if it were proved to be in the cells of regressive autistic children the source of the contamination would be difficult to disprove, in my (naive?) view.

In response:

To answer ‘Not an MD’: I mentioned herbal treatments and I can recommend the book “Healing Lyme Disease Co-infections” by Stephen Harrod Buhner. It contains comprehensive (but somewhat harrowing) information on mycoplasmas and includes a rather complex herbal treatment protocol. I have discussed my theory with the author and he says “This makes a lot of sense to me”.

Continue reading "Part 3--Regressive Autism---a New Hypothesis to End an Enigma? " »

Anne Dachel

Dachel Media Review: Self Advocating, Sound Sensitivity

Online newsBy Anne Dachel

Read Anne's commentary and view the links after the jump.

Jan 19, 2014, SILive.com: At one Staten Island middle school autistic students are speaking out for themselves

Jan 19, 2014, Scottsbluff (NE) Star Herald: The importance of child vaccines 

Jan 18, 2014, Akron (OH) Beacon Journal: Story time for Xavier: New monthly program aimed at kids with disabilities opens at library

Jan 18, 2014, CBS News: Why do some autistic children strongly react to noise?

Jan 17, 2014, TheStir.CafeMom: Still Think Vaccines Cause Autism? Watch This (VIDEO)

Continue reading "Dachel Media Review: Self Advocating, Sound Sensitivity" »

Kim Stagliano

The Unique Discipline of Martial Arts for Autism

 

Hanko ryu Kim Shirley
Update - Mom is now a Karate student herself!
Kyoshi and Dan kicking
Look at that proud smile!

By Kim Stagliano

My Facebook friends know that I train in Karate and  Kobudo (weapons) five or six days a week. On Saturday  I had completed a one hour kickboxing class in the morning and a ninety minute weapons class in the afternoon. Feeling tired, and ready to go home, I was chit chatting with a few other students and the dojo owner when I heard a keening cry outside. A sound all too recognizable having heard my own daughters cry out the same way. An "autism cry."  "That's my next student, my private lesson," said Kyoshi Danilo Torri, a 6th Dan black belt instructor who has trained since the age of seven and owns Hanko Ryu Martial Arts in Trumbull, CT. 

I had met an autism Mom at a meeting with our mutual Department of Disability Services case Kyoshi with Mia manager last Fall.   We had much in common.  She is a writer, and is looking at all options to help her son. She's a Warrior Mom.  I told her about the dojo's private classes for children with special needs. My own daughters train every week in simple exercises suitable to their abilities.

Sure enough, a few moments later, the beautiful blonde woman I had met opened the door and cajoled her crying son to enter the dojo.  She gently guided him to a seat to take off his shoes. He was crying out, as if in pain. "It's his gut," Mom said in her elegant Israeli accent. "He is often in pain."  Ah, called that one.  Wish I hadn't. She did her best to ease his discomfort as he squatted on the bench, posturing and holding his head. We greeted each other and I continued to gather my belongings before leaving.

As she was explaining to Kyoshi about her son's needs and behaviors, the child lashed out as quick as Bruce Lee himself, smashing his mother in the face.  Kyoshi instantly stopped the attack with very firm but resp----  well, I could explain what happened, but I think Mom can do a better job. This is what she wrote on her FB wall later in the day.  And what I wrote as well.

Please meet attorney and author of Autism Mom Shirley Blaier-Stein.

Kyoshi and Dan 2
Dan listening to Kyoshi.

Today at karate class I had a very special surprise.

Dan has been crying and whining all day today. Abdominal pain, as usual. When it was time to go to his new karate class (we’ve only been to one – absolutely amazing – class), he was whining, but still managed to get ready and come with me to the car. When we got there, even though he was in pain, when I gave him the option to go in or go home, he chose to come inside with me. Just after I helped him take off his shoes and explain to Kyoshi, the teacher, and Kim Rossi Stagliano, a fellow autism mom and a phenomenal writer, who also recommended this teacher to us, about what’s going on with my boy, Dan smacked me in the face really hard.

It was his way of saying ‘I feel terrible and I don’t want you to talk about me with these people while I’m present,’ and he had a point, but it really hurt.

What happened seconds after that smack, was so surprising and touching. Kyoshi grabbed Dan’s arm and told him to never hit his mother again and to say sorry (which Dan did!), and soon after that he took Dan inside the studio to start karate practice. Within seconds Dan started to cooperate with him.

Kim wrapped her arms around me and let me cry in her hug. When I felt a little better she ran to grab tissue paper and sat really close to me until I was OK. She did not leave until Dan’s practice was over and until she convinced me to join her and a group of other autism moms in karate practice and kickboxing, which I’m going to do starting next week.

I felt so lucky that Dan and I got to be supported by these two wonderful people today. Kim’s wonderful book is called All I Can Handle: I’m no Mother Teresa. Kim, I’ll never forget this day.

Today you were a mother to me.

Concurrently I had written on the Age of Autism FB page:

Continue reading "The Unique Discipline of Martial Arts for Autism" »

Cathy Jameson

Dream for Tomorrow

By  Dream Cathy Jameson

Today autism affects 1 in 50.  Odds are that more families will find themselves closer to an autism diagnosis today than yesterday.  Today doesn’t sound too promising, does it? 

Several times in his now famous speech, Martin Luther King, Jr. used the word today:

“I am happy to join with you today in what will go down in history…

…a great American, in whose symbolic shadow we stand today…

…we have come here today to dramatize a shameful condition…

It is obvious today that America has defaulted on this promissory note …

…as evidenced by their presence here today, have come to realize that their destiny is tied up with our destiny…

I say to you today, my friends, so even though we face the difficulties of today and tomorrow, I still have a dream.

I have a dream today.

I have a dream today.”

I have a dream too.  But my dream is for tomorrow. 

As far as autism is concerned and how it affects my son, today breeds dread and frustration.  It capitalizes on my fears.  The worry I have about autism and for my son keeps a tight grip on me.  It strangulates my thoughts and shrouds my thinking. 

Afraid of what isn’t being done for Ronan and for a great many other children, today brings no solace, just more anxiety.  Looking outside of my own home, today doesn’t look so good in other places either.  Newspaper headlines in America promote ineffective flu shots as our best defense against a temporary sickness.  They sing praises for immature celebrities’ behavior while neglecting to address a growing national crisis.  Headlines scream Look here! Look there! But just don’t look at autism.  Look the other way instead.

Continue reading "Dream for Tomorrow" »

Current Affairs

NY Authorities Find Remains: #FindAvonte

Avonte FindHuman remains are undergoing DNA analysis to see if they might solve the heartbreaking mystery of 14 year old Avonte Oquendo's disappearance after being allowed to elope from school last October 4th.  We wil bring you updates as available.

From CBS New York.

By Crimesider Staff

COLLEGE POINT, N.Y. - The attorney for the family of Avonte Oquendo gave a news conference Friday addressing reports of human remains found along the shoreline in Queens, N.Y. possibly belonging to the autistic boy who has been missing since Oct. 4, reports CBS New York.

 

Police boats, helicopters, detectives and water units are searching for additional evidence Friday after the remains were discovered around 7:15 p.m. Thursday.

David Perecman, attorney for Avonte's family, said he spoke to the boy's mother, Vanessa Fontaine, about the new developments 2 a.m. Friday.

Officers responding to a 911 call found a possible arm and legs on the rocks in College Point, police said.

Police also found a torso, some clothing and a dark-colored sneaker in the water, sources told CBS New York.

"It's a size five-and-a-half Nike Jordan sneakers and a size 16 jeans, which are both what Avonte was wearing on the day he left, which are troubling things to hear," Perecman told reporters Friday at the scene in College Point.... Read the full article HERE.

Dr. Andrew Wakefield

Dr. Andrew Wakefield Responds on Inside Charlottesville with Coy Barefooot

Coy logo

Here we have another great interview with Coy Barefoot. Earlier this week we brought you his interview with AofA's Mark Blaxill. Great to see Dr. Wakefield here. Enjoy.

GUEST:
Dr. Andy Wakefield, physician, medical researcher, and author of Callous Disregard and Waging War on the Autistic Child.

TOPIC:  Coy Barefoot talks to the British physician who was vilified, demonized and attacked from all sides, and who sparked a firestorm of controversy over vaccines, autism and public health.

ORIGINAL BROADCAST DATE:  Tuesday, January 14, 2014.

LISTEN HERE

Anne Dachel

Dachel Media Review: Future Care

Online newsBy Anne Dachel

Read Anne's commentary and view the links after the jump.

Jan 16, 2014, CBS 19, Charlottesville, VA: Planning for Future Care of Special Needs Children

Jan 13, 2014, Del Mar (CA) Times: Carmel Valley author releases new edition of award-winning book on autism

Continue reading "Dachel Media Review: Future Care" »

Tim Welsh

Lessons Learned from Failure.

Autism Friendly BusinessBy Tim Welsh

One of the most difficult things I think for people to do is analyze and come clean publicly when it comes to failure. I had two major failures that I will be putting to bed in 2014. I had great intentions, great plans, and most of the people involved were angels. Although there  was one major of devil. I am not sure if it is because I am so passionate to move mountains that sometimes I trust the wrong people. In this blog I will review the two projects and hopefully we can learn some lessons together.

The first project was Autism Friendly Business. This for profit venture was put together to teach businesses how to deal with the many new customer service situations arising from the aging of the population dealing with Autism. We provided an assessment of a businesses knowledge about ASD, provided recognition, tools and marketing to raise their level of service for those on the spectrum, those with special needs and all customers. We tried numerous levels of membership but ultimately the business climate was such that very few progressive forward looking entities took advantage of our services.

We actively supported with social media those businesses that expressed  a desire to learn and Autism Aidgrow with us. We were able to get a number of sign ups from very small to mega corporations. Of course, doing a start up with next to no operating capital and a team spread coast to coast is a little crazy. All of us dealing with loved ones on the spectrum, loss of jobs, injuries to spouses, elderly parents and much more. Bottom line this model was ahead of its time and it's time may never come. I would love to visit with anybody thinking that they can set up a for profit in this sector. Attacks came from many naysayers and individuals who I assumed would be supportive. You learn a lot about the psychology of your peers when you try to make a living here.

Continue reading "Lessons Learned from Failure." »

The Crippling Cost of Autism: When Will People Notice?

Money pileOur Anne Dachel has been hollering at the top of her lungs for YEARS that the autism epidemic has and will continue to ravage families.   The story below is from Canada, but in America, it takes a hand in the pocket to make citizens take notice.   Remember the gas prices of a few years ago, when electric cars ruled the highways and Hummers looked like dinosaurs? Today? Prices dropped a fraction and the H2s roared back to life. We have really short memories in America.  Autism will hit social security, Medicaid and many other government and private sector programs with a vengeance in the next 5+ years as the epidemic of kids "ages out" of school into........ 

My fear is that once America grows angry at the "sudden" explosion of people  handicapped by autism - from kids like my own to people with Asperger's on disablity or other government programs, the green light will shine to consider eugenics and post-birth eugenics a viable option. It scares the crap out of me.   KS

From Canada's Calgary Sun:

The lifelong cost to families with a severely autistic child is $5.5 million in a province lacking in adult care for the condition, says a University of Calgary think tank.

While the province is a leader in dealing with childhood autism, its public system of care for adults with the neurological disability is exclusionary and poorly-developed, states a report prepared by The School of Public Policy.

And its controversial decision last year to close the Michener Centre will only worsen the situation, say the study's authors.

That often places the burden to provide care on the shoulders of families, at an equivalent cost for supports at nearly $160,000 a year, said report co-author Carolyn Dudley. Read the full article here.

Anne Dachel

Dachel Media Review: Financial Burden

Online newsBy Anne Dachel

Read Anne's commentary and view the links after the jump.

Jan 16, 2014: WVEC Norfolk, VA: Parenting: Children and autism: 

Jan 15, San Jose Mercury News: Conference on autistic teens transitioning into adulthood set for Feb. 27

Jan 15, 2014, Calgary Sun (Canada) Costs of caring for autistic children crippling for families, says University of Calgary think tank

Jan 15, 2014, GlobalNews.ca: Families dealing with autism face heavy financial burden

Continue reading "Dachel Media Review: Financial Burden" »

Current Affairs, Vaccine Safety

Teri Arranga Has a Conversation of Hope with Dr. Brian Hooker

Conversation of hope


Prof. Brian Hooker, PhD, joins Teri in the debut of this new season of AutismOne: A Conversation of Hope. Dr. Hooker will be talking about documents that have been recently obtained via the Freedom of Information Act (FOIA) regarding the CDC cover-up of the relationship between autism and vaccines. In addition, he will discuss his research in the CDC's Vaccine Safety Datalink (VSD) database, where strong, statistically significant relationships have been found between vaccines and autism. Tune in for this vital information.

Autism One: A Conversation of Hope LISTEN HERE.

Tuesdays at 9 AM Pacific Time on VoiceAmerica Health and Wellness Channel

Approximately 1 child in 50 is diagnosed with autism, which gives autism the undesired ranking as the most prevalent childhood developmental disorder in the United States. 67 children will be diagnosed today - that is nearly 1 child every 20 minutes. Autism is treatable and children are significantly improving or recovering following appropriate therapies. “Autism One: A Conversation of Hope” hosted by Teri Arranga, includes discussions with the most experienced doctors, researchers, and therapists in the field, parents of recovered children, and advocates for the children and families. Learn more at the AutismOne site.

Current Affairs

Part 2 Regressive Autism - New Hypothesis to End an Enigma?

FrustratedRead Bill's post from last week HERE.

By Bill Welsh                                                

If you are the parent of a regressive autistic child in the UK and have been following the controversy re vaccination’s role in what has occurred you may have to take a deep breath and adopt a seated position before reading this article.

Something is not quite right!

From the very beginning something has not been quite right!

Those of us who witnessed a precious child gradually withdraw following MMR vaccination ‘know’ that MMR is deeply implicated. We do not need an epidemiologist in Finland to tell us we are wrong. We know!

But something is not quite right!

I concede we were up against incredibly powerful forces when we challenged the safety of the vaccination programme but, notwithstanding, we should have won our case by now. Instead we are no further forward. Where did we go wrong?

My appraisal will no doubt be regarded as controversial and perhaps disloyal but for what it is worth here is my opinion of where we went wrong:

From the very beginning parents in the UK were in the hands of ‘experts’, legal and scientific. Decisions were taken before many of us had grasped what had actually happened and as a result a runaway train went hurtling down the track, careering hither and thither, across continents, into court rooms, and along the way galvanizing parents to form action groups. But a decision, central to the entire dispute had already been taken and it was that decision on which our grounds for compensation may have foundered.

I recall reading a statement by Brian Deer (I told you to take a deep breath) where he said something along the lines of ‘If I wanted to prove that MMR caused autism I wouldn’t have gone through the gut’. Interesting, because in my Edinburgh clinic we saw about 500 regressive autistic children and about 20% did not appear to have bowel issues! And some had received single vaccines rather than the MMR!

Why then did we go “through the gut”? Quite simply it was the only show in town at the time. There was only one doctor, highly qualified and compassionate, who supported the parent’s view that MMR was implicated in what had happened and not only that but he could articulate a mechanism, his hypothesis, as to what had happened.

I believe he was correct about the measles virus in the gut, but perhaps not for all the children, only for a sub-set of the sub-set. Was he only partly correct?

Andy Wakefield once said ‘my hypothesis is only one hypothesis’ which is true but at the very beginning there were we assumed no other options. The lawyers went with this suggested explanation and that was before our imaginary train had even left the station.

Continue reading "Part 2 Regressive Autism - New Hypothesis to End an Enigma? " »

Anne Dachel

Dachel Media Review: Kumbaya, Speech & Vision, Vitamin Wars

Online newsBy Anne Dachel

Read Anne's comments and view the live links after the jump.

Jan 15, 2014, NPR Boston: Autism Is Hard Enough - Let's Not Make It Harder With A Fight

Jan 14, 2014, OregonLive.com: Drs. Oz and Roizen: Don't stop taking your multivitamin

Jan 14, 2014, CBS: Speech out of sync for many kids with autism, study finds

Jan 14, 2014, CNN: Vision, sound don't sync for some kids with autism, study suggests

Continue reading "Dachel Media Review: Kumbaya, Speech & Vision, Vitamin Wars" »

Current Affairs, Mark Blaxill

Coy Barefoot Interviews Mark Blaxill on Industry Capture, Autism's Rise

Coy logo
GUEST:
Mark Blaxill, co-founder of the Age of Autism news site and co-author with Dan Olmsted of the book by the same name.

TOPIC:  Mark discusses the latest we know about the autism epidemic and reviews the year 2013 in autism.

ORIGINAL BROADCAST DATE:  Wednesday, January 8, 2014.

Click here to listen.

Current Affairs, Vaccine Safety

Babies Respond To Tom Insel and IACC's Decision To Abandon Them

Tom InselIf you listened to or participated in yesterday's IACC full committee conference, please share your POV/analysis in the comments here at AofA.   IACC voted AGAINST including the words immunizations or vaccines in the strategic plan despite the link to immune response in ASD. Many of us have already had our children. Elvis has left the building. And wella, wella, wella now we have a lifetime to try to help our vaccine injured kids. But our kids have siblings, younger parents are still having babies and there are generations to come - babies who have been damned by Dr. Tom Insel.

Thank you to those who participated and did their best on behalf of our kids.  Katie Wright has summarized previous IACC meetings for us.  Her write up from the November 2013 meeting is below.  We'll have further review of yesterday's meetings soon.



By Katie Wright

Thank you to Lisa Ackerman for her recent post on the last IACC meeting, she inspired me to get my act together and finish this.

I have fallen behind because my son Christian has started developing grand mal seizures and must now be watched every minute of the day. I also have to stay on top of his twice-monthly IVIG sessions. We are waging a battle royale for insurance coverage, but it is infinitely worth it because Christian’s autism is thoroughly and completely immune mediated. That is why I found this meeting particularly infuriating, but more on that later.

OK, so our story begins at the NIH, in a jam-packed committee room filled with about 30 people, maybe 1 or 2 actual parents of someone with autism. There are 3 IACC members with very, very, very HF aspergers. The rest of the special committee are comprised of geneticists, brain imagers, psychologists and a few odds and ends.  So there you go: the autism research Stone Age. Am I giving away the whole story already?

The group was to first discuss question #1 of the Strategic Report, “When Should I be Concerned?” Frankly, I have no idea why they even need to ask this question in 2014! We really, really, really know the signs of autism now. There are over 11,000 studies on the signs of autism and probably just as many on the importance of early intervention.

Continue reading "Babies Respond To Tom Insel and IACC's Decision To Abandon Them" »

Current Affairs

Vaccine Injury: Tip of the Iceberg

IcebergBy Wayne Rohde

The Tip of the Iceberg.  A small evident part or aspect of something largely hidden.

How often have you heard the phrase, it is just the tip of the iceberg? How relevant is it today regarding the discussion of vaccines, vaccine injury, autism, and disease?

Over a century ago, Captain Edward Smith was at the control of the mightiest transcontinental passenger ship liner, the Titanic.  As he and his crew confidently sailed the North Atlantic from England to the United States, little did he know that he was about to succumb to the worst ocean disaster man has ever known.  We all have heard the stories, watched the movies and documentaries about that fateful journey.

But have we been paying attention to the iceberg that we, in current times, have encountered?

Our government, the pharmaceutical industry, and the modern medical establishment have us believe that what we see as vaccine injury is very rare.  Just a blip on the horizon, a very small speed bump.

Do you know how many vaccine injured persons filed petitions in the National Vaccine Injury Compensation Program (NVICP)?  Only 501 petitions for the fiscal year 2013 ending September 30, 2013.  How many have been filed for this current fiscal year?  89.  And if you project that figure out as to estimate the entire fiscal year 2014, the number will be approximately 534.  In 2012, the number of petitions filed was 400, in 2011 it was 386.  We see a trend increasing each year.  The largest number of petitions filed in the history of the NVICP was 2,592 for the year 2003. 

But we really do not know how many petitions “could be” filed if the NVICP was promoted by the Secretary of the Health and Human Services (HHS) as mandated by law.  The Tip of the Iceberg can be defined as the part that is evident of something largely hidden.  So what is the hidden number of injuries that could be filed as petitions?

There have been discussions to create public awareness campaigns, only to be squelched by HHS officials.  In 2010, a public awareness campaign was shelved.  Banyan Communications received a $ 300,000.00 contract to develop a public awareness campaign.  Discussions held in meetings of the Advisory Commission on Childhood Vaccines (ACCV) centered on determining who will be the primary targets of the campaigns.  Should the focus should be on the general public or a specific group such as pediatric doctors? 

And the details of the Banyan contract which determined goals and actions plans for the Secretary of HHS Kathleen Sebelius to implement were never put in place.  My FOIA’s (Freedom of Information Act) to examine the Banyan contract, to determine which budget paid for the contract, why was the proposed awareness campaign stopped, and who said no, have gone unanswered?

So the question of how many petitions could be filed is very difficult to determine.  Several factors artificially keep the level of petitions to a minimum are a lack of public awareness, difficulty in finding an attorney and medical experts, medical practitioners that deny vaccine injury can happen, the aggressive screening of potential clients by attorneys, and parents who are too emotionally drained just trying to find and maintain medical care services for their children. 

It has been argued that the number of vaccine injuries report to VAERS each year only represents a small percentage of the total number of vaccine injuries that are incurred by children and adults.  Some figures have been placed forward stating that 1%, 5% or even 10% of vaccine injuries actually get reported to VAERS.

Continue reading "Vaccine Injury: Tip of the Iceberg" »

Anne Dachel

Dachel Media Review: Funding, Insurance, More Schools

Online newsBy Anne Dachel

Read Anne's commentary and view the links after the jump.Jan 13, 2014, Vancouver (WA) Columbian: Measles cases on rise in U.S

Jan 12, 2014, Sioux City (IA) Journal: LETTER: Physician writes in support of vaccinations for children

Jan 11, 2014, Durham (NC) News Observer: Geri Dawson has devoted a career to autism treatment and research

Jan 11, 2014, TIME Magazine: Autism and alternative medicine: getting real about the benefits and risks

Jan 10, 2014, KIMA-TV Yakima, WA: Funding options for children with autism

Jan 10, 2014, WTAJ-TV Altoona, PA: MRI's, Special Glasses Used to Study Autism

Jan 10, 2014, Medford OR Mail Tribune: Vaccination law 'is really unfair'

Jan 10, 2014, Fox 13, Salt Lake City: Officials break ground on school for those with autism spectrum disorders

Jan 10, 2014, Syracuse Post Standard: Cuomo signs law that will pave the way for health insurance coverage of autism treatment 

Continue reading "Dachel Media Review: Funding, Insurance, More Schools" »

Sponsor News

SafeMinds 2013 Reseach That Focuses On Need To Know Science

FutureManaging Editor's Note: Last week Katie Wright wrote about the paltry assortment of research conducted by Autism Speaks. Here, SafeMinds shares their research from 2013.  Thank you, Safeminds.

A look back at Safe Minds Research in 2013 – “Research that focuses on need to know science.”

It is now widely accepted that environmental factors play a huge role in the etiology of autism. Yet, even with this fact, most autism research continues to be diverted into less fruitful areas. To date, the autism community has very little government-funded research that helps us to understand why some children are more vulnerable to environmental exposures and what those exposures might be so they can be avoided and individuals with autism successfully treated. That is why SafeMinds has been laser focused on environmental research and the gaps that exist in our knowledge of causes, treatments, recovery and ultimately, prevention.

Over the past decade, SafeMinds has funded approximately $1.5 million in research with the help of supporters like you. This research has lead to the publication of over 20 research articles / and a greater understanding of the mechanisms that underlie autism spectrum disorders. Below is a list of projects that SafeMinds funded in 2013, so be on the lookout for several new publications soon. We are proud of our research accomplishments but there is so much more we need to know to help those suffering with autism now. If you would like to help us fund more of these kinds of studies please visit www.safeminds.org and click on the “donate now” button to support our research efforts.  All donations are tax-deductible.

Lyn Redwood, RN, MSN and Laura Bono

SafeMinds Research

1. There is emerging evidence supporting the hypothesis that autism may result from a combination of genetic susceptibility and exposure to environmental toxins at critical moments in development. Recent research identified a much higher prevalence rate of autism among grandchildren of Acrodynia (pink disease) survivors, which supports the hypothesis that mercury susceptibility may be a risk factor for autism.  SafeMinds is currently funding additional research in an effort to identify genetic idiosyncratic sensitivity to mercury in an effort to be able to identify infants who are more vulnerable to mercury exposure so preventive treatments can be started early and efforts made to avoid unnecessary exposures. 

2. Vaccination is inherently an immune activating process and many parents of children with ASD report episodes of regression after vaccination. While vaccines have been tested for efficacy in protecting against pathogenic infection, there have been no studies investigating whether immune challenge through vaccination in early infancy could negatively affect neurodevelopment. Therefore, SafeMinds is funding studies in an animal model to determine if immune challenge through vaccination can affect the various cell populations in the developing brain, including purkinje cell number, hippocampal cell size and microglia.

Continue reading "SafeMinds 2013 Reseach That Focuses On Need To Know Science" »

Current Affairs

Regressive Autism---A New Hypothesis to End an Enigma?

Question markBy Bill Welsh.

It is difficult to imagine a worse scenario than the one experienced by the many parents I have met.

To witness a perfect child gradually lose all his or her skills, regress, and develop distressing behavioural difficulties, often including self injury, should never be visited on any family, but the sad reality is it has been occurring increasingly for over twenty or more years. And as if observing the deterioration of the child is not enough- even worse eventually follows, sometimes years later,—an official diagnosis of autism (ASD)! Parents soon discover that ‘lifelong’, ‘incurable’ and ‘genetic’ are the three words most associated with the condition. ‘Regressive autism’ is a diagnosis wrapped in bleak negativity.

The latest figures for the UK inform us that over 100,000 schoolchildren have an autism diagnosis. Medical officialdom is quick to re-assure society that there are valid reasons for this significant increase in ASD, including for example ‘better recognition’ and ‘widening diagnostic criteria’.

They are mistaken.

Over 70 years ago autism was identified as a new condition, and was regarded as ‘rare’, that is until about 1990 when its diagnosis began to increase markedly. It is now common. No one in medical science has offered a plausible (one that has survived close scrutiny) explanation for the mystery known as the ‘autism enigma’. This is surprising as there are plenty of clues:

Most, but not all, parents have no hesitation in identifying a vaccination event as the forerunner to their child’s gradual withdrawal. With over 1,500 parents taking legal action, in the usually non-litigious UK, during the MMR vaccine episode one would have thought the role of vaccination would have received very close scientific examination. Inexplicably this did not happen. Official focus remained on the need to maintain public confidence in MMR in order to prevent communicable diseases rather than on a thorough examination of parental testimony. Vaccination as a precursor to a child’s descent into regressive autism became a neglected vital clue.

Another disregarded clue was the consistent reporting by parents of auditory processing disorders in their child. Much of what is seen and described as autistic symptoms (sound sensitivity, communication problems, language development etc) have a clear auditory component while it is highly likely that other symptoms (behavioural difficulties, social functioning etc) might have too. Auditory processing disorders are common in these children. Is this another neglected clue?

 A scientific team in the USA carried out a large and important study of twins and concluded that 65% of autism is caused by an environmental factor, leaving only 35% of autism as genetic in origin. This game-changing news, contradicting a long held belief structure, was seemingly ignored!

A, later retracted, gastro-intestinal study of 12 autistic children in the UK apparently identified “a novel form of bowel disease”. The retraction of the study did not dispel the fact that many autistic children experience bowel problems.

In a landmark decision in the USA a child (Hannah Poling) was granted compensation for having developed ASD following multiple vaccinations including MMR.  The court’s decision was complicated by the discovery that Hannah had a mitochondrial disorder which we were told may have contributed to her withdrawal into autism. (It has since been established that many autistic children have mitochondrial disorder). Was this another overlooked lead?

Continue reading "Regressive Autism---A New Hypothesis to End an Enigma? " »

Cathy Jameson

Vaccines: "A Necessary Evil?"

Flu wolf

By Cathy Jameson

I’ve mentioned before that several times throughout the year people contact me.  They either want to find out more of Ronan’s story or they have some questions about vaccines. I’m usually quite happy to share what’s happened to Ronan as well as offer my thoughts on the current vaccine schedule.  I’m not so happy anymore.

Hey! Glad I caught you. I’m going to talk to my doctor about getting some of the shots. Don’t worry, not all of them, just the ones he says Jackie needs which means out of the four for today’s visit, so he’ll only get three.  I’ll let you know how it goes!

Please don’t.  I beg you.

I hate to bug you because of all that you have going on, but can you tell me again what it means when you get a fever and a full-body rash after a vaccine?  I can send you a picture of it.  Lily’s been misssserable since her two-year old check-up. Oh, do you know how much Tylenol I should give? I can’t remember what the doc told me to give her.

Ohmygosh, no. And wait. They’re still saying to give Tylenol?  Are you kidding me? 

Hey, Cathy, I have been on the fence about vaccines.  I spoke to my doctor about them and she says vaccines are a necessary evil and I shouldn’t think too much about them…

A necessary evil?!  You’re gonna buy that?

Come on, moms.  Have you forgotten what’s necessary – food, clothing, shelter? As parents we obviously take those basics a step further.  We strive to provide proper nutrition and a clean, caring, positive environment.  We create a bond with our children.  We help stimulate their minds and foster their growth.  When those basic necessities are in place, baring major medical issues, moms have most of what they need at their fingertips.  Kids grow.  They thrive.  They hit their milestones. Life, as nature intended, has a chance.  Why complicate things by adding ‘necessary evils’, and why so many at once over such a short period of time?

I agree that ‘necessary evils’ are evil, but I refuse to think that they are necessary.  Necessarey doesn’t leave a destructive trail contributing to the annihilation of children’s health over several generations like vaccines have.  The fragility of our children’s health today is a reflection of that destruction.  Look at the national rates of childhood obesity, allergies, asthma and autism and how they’ve drastically risen as more necessary evils among other “preventative measures” have been added to our food and our environment.  Instead of preventing illnesses, necessary evils have made once healthy children turn into sick kids, and has turned sick kids into chronically ill adults.  Sadly, the wave of neurologically sensitive individuals isn’t going to end any time soon.  It can’t when necessary evils are still being glamorized, promoted and forced upon the most fragile of our population and when ill-informed moms run to parents like me for guidance. 

Children today are being harmed in the name of ‘healthcare’.  Some parents unknowingly submit to that.  Other parents find out long after it’s happened.  By then, though, it’s too little too late.  Their children’s health already jeopardize and their future compromised.  Influenced by necessary evils instead of common sense, life becomes more difficult than it had to be.  Necessary evils are the greed, the manipulation and the lies of the industry.  They add to the manipulation of the situation.  They cover up the fabrications that trickle down from the top.  They attempt to water down the truth.  Necessary evils can do something more sinister; they can make moms feel like they have no right to doubt, to question or to think. 

When did it become okay for moms, and parents in general, to stop thinking?  Our nation’s founders prided themselves on forward thinking, on fighting to protect their rights and on revolutionizing the way they wanted and needed things to be done.  They knew it was going to take work.  They knew it wasn’t going to be easy.  They were committed to see things through, and they acted on what was important to them to help preserve their future—their children.  Our children’s futures are important and worthy of being protected too. 

Continue reading "Vaccines: "A Necessary Evil?"" »

Dan Olmsted, Dan Olmsted

Weekly Wrap: A Glimpse of our Readers in 100,000 comments

AofA Red Logo Ayumi YamadaBy Dan Olmsted

Every day, four of us at Age of Autism -- Kim, John Stone, Teresa Conrick and to a lesser extent myself -- "moderate" the comments that are posted in response to articles on AOA. Unlike readers, we see them in one long string as they pop up as feedback to many stories at once.

The most current and hot-button stories, as you will imagine, get the most response, but great comments and updates are added all the time on stories from our archive -- now totaling 6,133 over six years (comment total: precisely 99,500 and counting as of 10:17 a.m. Friday). And even straightforward news updates can generate passionate and personal essays.

We call attention to these wonderful additions by highlighting the most recent on the right hand side of our home page. But something I've often wanted to do is simply run a week's worth as an article in itself to share with you what we are seeing, learning from -- and being so impressed by -- on a daily basis.

So here goes. As an FYI, and as we clearly state, we do "moderate," which means we make a decision whether to post each comment. No apologies for that -- AOA would become troll heaven if we gave the autism epidemic and vaccine injury deniers carte blanche. And we watch for personal cruelty, wishing anyone harm, invasive comments about other people's children, destructive infighting and of course libel. We run the overwhelming majority (only three were deleted in the past week, compared to all those printed below); our choices reflect what is called editing, not censorship.

To start off, here's a comment by David Thrower in Great Britain, the kind of thing that, repeated hundreds of times, has deeply shaped my understanding of the Age of Autism:

"My son was perfectly healthy until vaccinated against measles in the UK. We watched him disintegrate into profound autism in the weeks following his immunisation. No one else has put forward any, let alone a remotely credible, alternative explanation for this. I remain 100 per cent convinced that his immunisations caused his dramatic regression. David Thrower Warrington, UK"

Now for the rest, in most recent order but not sorted by the articles they are responding to -- you'll see them as we do. In most cases the theme is clear, or will become so. I've dropped only a few that either don't stand alone well or were multiple comments by the same person, in some cases making the same point on different posts.

Enjoy -- and, as always, thanks for immeasurably enriching AOA.

--

Alison MacNeil said:

Thank you Lou, This is so powerful and my response is very emotional.

Reply | Edit | View | 1 hour ago on Autism and The Echo…

Melissa said:

Interesting and enlightening article.

Reply | Edit | View | 1 hour ago on Voices for Vaccine…

Teresa Conrick said:

Thank you, Lou for writing this haunting expose. The tragedy of Minamata has always stayed with me. Those words ring so true in the epidemic of autism: “We shall pursue you to justice, and we shall not forget.”

Reply | Edit | View | 2 hours ago on Autism and The Echo…

Adriana said:

Thank you, Jenny. I remember someone pointing out that the key thing and the common ground between all these various toxic substances and sources is the "route" by which the damage is done to cellular pathways. Different substances can cause virtually the same types of injuries. So I think 2014 should be the year that the specifics of Carson's and JFK's campaign should be resurrected and the year the public stops viewing cellular science as the "forbidden texts." The science feeds policy and policy is everyone's business.

Reply | Edit | View | 7 hours ago on Soylent Greenwashin…

Linda said:

The person or persons known as "Voices for Vaccines" at the Facebook page reminds me of the Wizard of Oz. Reading the conversation, I imagine VfV to have a loud booming voice. 'THE WISE AND POWERFUL VOICES FOR VACCINES HAS SPOKEN!' Since Reiss has been called out on the ridiculous number of posts she produces, maybe it is she who is hiding behind the curtain, so she can spout all she wants (or is paid to do) posing as a different mysterious person. No matter who VfV is, the tone of the whole thing is just really weird. I wonder how much they pay people to like them. Maybe they give students extra credit to like their Facebook page.

Reply | Edit | View | Yesterday on Voices for Vaccine…

Continue reading "Weekly Wrap: A Glimpse of our Readers in 100,000 comments" »

Anne Dachel

Dachel Media Review: Anti-Vaccine Free Loaders?

Online newsBy Anne Dachel

Jan 10, 2014, Our View: Anti-vaccination Freeloaders Endanger Us All

Idaho ranks second-to-last in the nation for vaccination levels among its kindergarteners, behind Oregon. Less than 60 percent of Idaho's 2-year-olds are vaccinated, reports the Annie E. Casey Foundation, 11 percentage points below the national average.

It's a cultural epidemic in the American West - Alaska, Washington state, Colorado and Arizona also top the list. It's a trend founded not in science but in fear.

Six percent of Idaho's youngest public school students haven't been through the standard vaccination regime before entering school, says the U.S. Centers for Disease Control. Just 52 percent of incoming students in Filer's district have been inoculated. . .

Continue reading "Dachel Media Review: Anti-Vaccine Free Loaders?" »

Current Affairs

Autism and The Echo of Minamata's Mercury Tragedy

Minamata
By Lou Conte

It began with dead fish floating on the surface of Minamata Bay in the 1950’s and ended with over two thousand certified human victims and a devastated city. In 1973, Judge Jirp Saito directed the Chisso Corporation to compensate victims of Minamata Disease, a form of mercury poisoning. Chisso’s factory had poisoned the bay and the people of Minamata. The death-bed confession of Dr. Hajime Hasokowa, a doctor, researcher and Chisso employee who uncovered the company’s role in the poisoning, was critical to the court’s decision. 

Many have heard about the infamous Minamata mercury poisoning incident but few have really considered the ordeal of the victims. Minamata’s tragedy is not just about mercury poisoning. It is about what can happen to and between people when the truth is not told.

We can learn from their tragedy. I believe that they would want us to.

Minamata was an agricultural and fishing village on the western shore of Kyusho, in southern Japan. In 1907, the Chisso Corporation opened a factory that produced plastics and other industrial products. Minamata prospered and became a thriving “one company” city. Chisso brought economic growth and improved the standard of living of the residents.

Mercury, a by-product of the manufacturing process, was dumped into the bay where it ultimately entered the food chain. Sea food from the bay was the primary source of protein for the city’s residents who celebrated their love of the sea in a yearly harbor festival.

The first signs of mercury poisoning were cats “dancing” – suffering mercury induced spasms actually - in the streets. Some of the cats appeared to commit suicide by throwing themselves into the bay.

Then people began to get sick. Some would suddenly shout uncontrollably and suffer slurred speech. Skills such as writing, holding chop sticks or buttoning shirts were lost. Victims trembled and had trouble walking. Some would tear at their clothes, writhing in agony. The residents had no idea what was happening and called it the “strange disease.” Many suffered a type of paralysis that contorted their limbs. Some died quickly, within weeks. Some lingered for years. Their suffering was appalling.

Then it got even worse. Children were born with horrible birth defects.

Continue reading "Autism and The Echo of Minamata's Mercury Tragedy" »

Anne Dachel

Dachel Media Review: Doctors' Autism Predictions

Online newsBy Anne Dachel

MedPageToday.com: HOT TOPICS 2014: Autism

What do you anticipate will be the most important clinical development in autism in 2014? We asked four specialists from around the country for their views: Susan L. Hyman, MD, of the University of Rochester, Robin L. Hansen, MD, of the University of California Davis, Max Wiznitzer, MD, of UH Rainbow Babies and Children's Hospital, and Joseph Piven, MD, of the University of North Carolina. Their answers touched on gene-environment interactions in early life, technologies for diagnosis and treatment, and the importance of lifelong attention to patients' needs.

Top experts make predictions about what the medical community will do about autism in 2014.

Dr. Hyman: "There's so much exciting neuro-biological research going on. We know so much more about how the brain works. . . but what's going to make a difference in 2014 is the evidence that we have for rolling up your sleeves and doing the hard work of evidence-based intervention that involves early screening, early diagnosis, and intense treatment that's generalized to the home. We also know from neuro-biologic research that treatment continues to be effective throughout the lifespan. So continuing intervention through adulthood is incredibly important. There is no magic. It's rolling up your sleeves and doing the hard work and that's going to be helped by the autism insurance legislation that's state by state working its way across the country. . . . "

Continue reading "Dachel Media Review: Doctors' Autism Predictions" »

Anne Dachel

Dachel Media Review: Low Vax Rates, Adult Services

Online newsBy Anne Dachel

Read Anne's commentary and view the links after the jump.

Jan 8, 2014, Twin Falls (ID) Times-News: Idaho Vaccination Rates Among Lowest in the Nation

Jan 7, 2013, WPTV West Palm Beach, FL: Palm Beach Gardens mother says more services needed for adults with autism

Continue reading "Dachel Media Review: Low Vax Rates, Adult Services" »

Katie Wright

Katie Wright on Autism Speaks' Science Department: A Year in Review

GroundhogdayBy Katie Wright

 Part 1

Almost a year ago Dr. Rob Ring became Autism Speaks new Chief Scientific Officer. I was told that this would be a new era at AS science. Dr. Ring would be introducing more innovative, original research, reducing the amount of learn the signs studies and prioritizing underserved, severely affected people, biomedical interventions and meaningful here and now treatment for all. Sounds good right?

Well first the good news. AS funded an excellent  $120,000 study on wandering prevention and another really terrific study on vocational training for young ASD adults. Earlier this year, thanks the very dedicated work of an AS board member, AS also funded a highly innovative study on  $100,000 study on PANDAS. .

I allowed the entire year of 2013 to pass without any public comment because I wanted to give Dr. Ring the opportunity to follow through with his proposed reforms. However, we are now eight months into Dr. Ring’s tenure, looking at the most recent slate of grants, the third grant cycle under Dr. Ring’s authority. These grants are largely disappointing and so painfully conservative in nature that I cannot remain silent. I have tried, very hard, behind the scenes, for years, to lobby for better research. No one at AS science is listening. Our ASD children and young adults deserve so much better.

In 2013 virtually ALL the Weatherstone Predoctoral Fellowships were either genetic, early intervention or brain imaging in nature. It is my understanding that Weatherstone was intended to draw innovative young investigators into the field of autism, with special emphasis on the GAP areas in ASD research.  AS has saturated the field early intervention and learn the signs research with money. There is absolutely no need to continue to subsidize growth in this area. To a large degree the same problem applies towards the fields of genetics and brain imaging.

Imagine if the NIH were to subsidize more research into the dangers of smoking cigarettes, which is what is happening here.

There are already 1,295 studies on autism and brain imaging/ fMRI and at least 1,000 more in the pipeline. Simons, Cold Springs Harbor and the NIH are MORE than happy to fund this area of research, AS needs to move on.  Brain imaging is all about looking at brain inflammation, we need to know what environmental triggers are CAUSING this to happen. There are over 5,000 published studies on autism and genetics. Naturally some genetics research is indeed valuable but why are most AS grants still genetic in nature? Dr Ring knows this is NOT what AS families want.  There are 11,000 published studies on the signs of autism. That is e-n-o-u-g-h; there are over 6,000 studies on early intervention. Additionally there are p-l-e-n-t-y of geneticists and brain imagers in the field or autism research. Weatherstone should be subsidizing predoctoral students in the biomedical and environmental sciences fields, neglected by AS and the NIH. Weatherstone could also be supporting researchers to study the biological functions of autism via GI, autoimmune and food allergies.  How refreshing that would be!

Let’s take a look a the biggest Autism Speaks grants of 2013:

1) Preclinical Autism Consortium for Therapeutics (CA)                         $715,000

These consortiums appear to be a Two MILLION DOLLAR check to geneticists towards mystery drug development. Typically these studies research “core issues” (behavioral aspects- not total body autism) of autism. We cannot afford to go down the same avenues over and over again. We already tried this. AS spent 5 MILLION DOLLARS on the Fragile X /Seaside Therapeutics drug. The drug certainly helped those with Fragile X but not that the other 95% of people with autism. These rare chromosomal disorders are such a different animal; they do not translate to typical autism. Dr. Crawley mainly does genetic and behavioral research.

2) Preclinical Autism Consortium for Therapeutics (TX)                         $615,000

Dr. Paylor, the fundee is a genetics researcher and specializes in, you guessed it, Fragile X. There are 837 published studies on autism and Fragile X and probably 500 more in the pipeline.

3) Preclinical Autism Consortium for Therapeutics (MA)                        $600,000

Dr. Sahin is a genetics researcher and specializes in, naturally, Retts Syndrome and Tuberous Sclerosis research. FYI there are a total 1,070 published studies on autism / TS and Retts.

The idea that these 2 million dollar (and that is just phase 1!) genetics consortiums will lead to the creation of AS drugs is a great idea in theory, but in practice this project is a huge luxury we cannot afford.   Hasn’t the Alzehimers community spent billions doing this, with no success? Too many people with ASD are suffering terribly today and we cannot and should not ask them to wait a dozen years for potential treatment drug when we have so many unstudied autism treatment options are ready to be researched right NOW.

AS could be testing the dozen or so drugs/ medicines currently in off label use in the ASD community right now! Do a clinical study into Pentasa an anti-inflammatory for GI disease- today! Do a TSO study on people with severe GI problems- today! Do a decent dietary intervention diet research towards the reduction of hyperactivity, project today! Do an IVIG project on severely immunocomprised ASD people- today! Do a TMS study on those with HF autism now!

4) Which placement for which child in urban early intervention?         $447,000

Ok, I think we all know the answer to this one: the best available early intervention. There is no mystery here. The problem is $ and resources. There are 6,000 studies on the importance of early intervention. Children in urban areas need the same early intervention as children elsewhere. There is not an “urban autism.” Urban ASD children are indeed an underserved but the problem is political will and resources, not a lack of early intervention research.

5) Risk Evaluations for Latinos                                                                   300,000

On the face of this grant looks good but the fundee is: Dr. Eric Fombonne. OK, my immediate thought is, again: “Is AS science out of their mind?” In the not too distant past, Fombonne was charged with unethically acquiring AGRE parent data for an unauthorized study. Yet, Fombonne is rewarded with a huge $300,000 research project? Dr. Fombonne has long been on the record that there is no autism epidemic, no real rise at all. Additionally, Fombonne testifies, for money, against disabled children in vaccine court.  What a guy, right?

Continue reading "Katie Wright on Autism Speaks' Science Department: A Year in Review" »

Anne Dachel

Dachel Media Review: Shot of Reason, Vaccines Vital?

Online newsBy Anne Dachel

Read Anne's commentary and view the links after the jump.

Jan 7, 2014, UC Santa Barbara Daily Nexus: Get Your Shot of Reason

Jan 7, 2014, The Columbian (Vancouver, WA): In Our View: Vaccinations a Vital Defense

Jan 5, 2014, Wall Street Journal: A Booster Shot for Vaccines

Continue reading "Dachel Media Review: Shot of Reason, Vaccines Vital?" »

Adriana Gamondes

Soylent Greenwashing: The Compact Fluorescent Mandate, Mito-Epidemics and the Brave New Mercury Apologism

SG 1
By Adriana Gamondes

You tell everybody. Listen to me, Hatcher. You've gotta tell them! Soylent Green is people! We've gotta stop them somehow!    

~ Detective Robert Thorn, Soylent Green, 1973 (From imbd: In an overpopulated futuristic Earth, a New York police detective finds himself marked for murder by government agents when he gets too close to a bizarre state secret involving the origins of a revolutionary and needed new foodstuff.)                                                           

Given the fact that the U.S. joined the “Minamata Convention on Mercury,” an international environmental agreement which supposedly addresses “specific human activities that contribute to widespread mercury pollution,”was anyone recently surprised to discover that regular incandescent bulbs are being phased out and were off the shelves by January 1st, 2014, and that mercury-containing compact fluorescent bulbs will mostly be sold in their place? Wasn’t the incandescent ban overturned a few years ago?

Good news first: some incandescent manufacturers are using the “rough service bulb” loophole to keep regular 40, 60, 75 and 100 watt bulbs available to consumers, sometimes at twice the cost, though typically they last longer and are less prone to breakage than the low-pressure mercury bulbs. The bad news is that most people are going to give in and buy CFL and most will not be properly disposed of,  potentially dumping more mercury into an environment that is not only dangerously overburdened with mercury itself but with toxicants that compound the effects of mercury. 

It’s known that mercury is both acutely and chronically toxic: it can outright kill or gradually poison at remarkably low levels, but little is commonly understood about the mechanisms by which mercury impacts health.  Aside from mercury’s effects as a metalloestrogen that can alter the sexual characteristics and behavior of various species, one of mercury’s primary routes of damage is its targeting of mitochondria, leading to an array of seemingly unassociated conditions from cancer to autoimmune disease to cognitive decline and birth defects. This is why Rachel Carson focused on the mito-targeting properties of an increasing number of industrial chemical compounds in her 1962 book, The Silent Spring, which summarized that mitochondrial damage would be the downfall of many species of plants and animals, including humans: “Some of the defects and malformations in tomorrow’s children, grimly anticipated by the Office of Vital Statistics, will almost certainly be caused by these chemicals which permeate our outer and inner worlds.”

You know the expression “cut to the quick”? If mitochondria, as the organelle-engines which produce energy in every living cell in every living organism on earth, represent the “quick,” mercury would be the obsidian knife of the modern toxic arsenal. But part of the problem is that it’s not alone.   In Mitochondria as a Target of Environmental Toxicants, Meyers et al. argue that,

The high lipid content of mitochondrial membranes facilitates accumulation of lipophilic compounds such as polycyclic aromatic hydrocarbons (PAHs) (Backer and Weinstein, 1982) and some alkylating agents (Wunderlich et al., 1972). Cationic metals, such as lead, cadmium, mercury, and manganese, have also been shown to accumulate in mitochondria preferentially (Atchison and Hare, 1994; Bucio et al., 1999; Castellino and Aloj, 1969; Gavin et al., 1992; Sokolova et al., 2005a). These metals may accumulate in mitochondria due to both entry via calcium transporters (i.e., molecular mimicry) and chemical behavior resulting from their interactions with mitochondrial pH and charge.

The authors provide a short list of environmental mitochondrial toxins and drugs which cause mitochondrial damage and are suspected of proliferating an epidemic of mitochondrial-related diseases:

Adriamycin (Wallace, 2007; Mustonen and Kinnunen, 1993)

Nucleoside reverse transcriptase inhibitors or NRTIs and analogs (Benhammou et al., 2007; Blanche et al., 1999; Chan, 2007; Claessens et al., 2003; Divi et al., 2010; Kohler and Lewis, 2007; McKenzie et al., 1995)

Continue reading "Soylent Greenwashing: The Compact Fluorescent Mandate, Mito-Epidemics and the Brave New Mercury Apologism" »

Anne Dachel

Dachel Media Review: Early Detection in China, Shooting in OH

  Online newsBy Anne Dachel

Read Anne's commentary after the jump.

Jan 6, 2014, Australia Network News: Researchers implement program in China that allows for early detection of autism

Jan 5, 2014, Pittsburgh Post Gazette: Encountering autism: Goal of DVD is to sensitize police to those with disorder

Jan 4, 2014, Sioux City (IA) Journal: Vaccination exemptions on the rise in Woodbury County

Jan 4, 2014, Us Magazine: Jenny McCarthy Slams Rumor That Her Son Doesn't Have Autism

Jan 4, 2014, Denver Post: A right to recognize the risks of vaccines

Jan 3, 2014, Columbus (OH) Dispatch: One dead after police shooting at home for disabled

Jan 3, 2014, Livingston Daily (Howell, MI): Severe H1N1 flu cases reported at Michigan hospitals; doctors urge people to get vaccine

Continue reading "Dachel Media Review: Early Detection in China, Shooting in OH" »

Tim Welsh

Welcome Tim Welsh "Tanner's Dad" To Age of Autism

Tanners Dad Logo
Managing Editor's Note: We are pleased to announce that Tim Welsh, whom you know as Tanner's Dad is now a contributing editor.   Please follow him on Twitter @TannersDad.

Welcome.....  KS

By Tim Welsh

We are advocating during a time of great stress and strain on our families. Some advocates are stepping away to refuel, retool and reset their priorities. I have chosen to dig  deeper, push harder and go back to my roots of blogging the issues that face families, fathers and folks who are dealing with individuals with the greatest deficits due to Autism. It is not an easy road but I believe Age of Autism is the vehicle that is blazing a trail that history will show is the right one to follow.

Writing an introduction to the community is difficult. I have been an advocate for the community for over a decade now. I know that I have been blessed to be surrounded by amazing teams and witnessed a few miracles. I hate to sound boastful at the rehashing of the accomplishments. Suffice it to say, if you want to revisit history Google: TannersDad Autism Tim Welsh. I have over 1000 bylines and more than 120,000 tweets to my credit. I believe in general twitter can be a waste of time but for our families it has produced many grants, a few vehicles, money, and a movie. Even a rock anthem "Vaccine Epidemic" thanks to The Refusers written about Tanner and I.

I approached Mark, Kim and Dan with a request to join the team. I have taken two years off from blogging. During the last two years I was active on twitter and helping promote and coordinate showings of the documentary "The United States of Autism". This film features many of the Age of Autism family. I believe our message and story will reach the masses in this travel log visiting many individuals with different points of view of Autism. Even though I requested that I join this spring they graciously welcomed me with open arms and asked me to join in a New Years announcement.

I hope I can research and present stories you are interested in. Tanner is now 16 still non verbal and level 3 needing care around the clock. We have had a year of dealing with seizures and epilepsy. We are still trying to understand and address gut issues in the wilderness of downstate Illinois. I have always tried to stay above the fray of community politics but I am not afraid to confront, question and demand respect and services for our loved ones. I am married to Cheri approaching 30 years. She keeps me grounded and always points out there is so much more to do for Tanner and our loved ones.

Finally I just want to praise you in how ever you have chosen to fight. I pray daily for your family and the community. I hope that 2014 is a year of growth, results and action. I believe we have seen enough of the color blue and puzzle pieces. It is time to see action and results. Please feel free to call, tweet or email me with any concerns, questions or story ideas or feedback. Happy New Year and God Bless - TannersDad Tim Welsh Autism and Health Advocate.


Tim Welsher TannerTim Welsh, is one of the most active and influential Parent Advocates for Autism. Avid Speaker, blogger, and Tweeter (@TannersDad). Tim works to build unity within the Autism community, Gain Insurance coverage reform, End Restraint & Seclusion, Advocate for services, prevent wandering and much more. Tim & his wife Cheri have one son Tanner (16).

Favorite tweet…
“I have a son he has autism, but, I also have dream. I dare dream of a world where profound regressive autism is not only treatable, but is also preventable”



Current Affairs, Jenny McCarthy

Media Bullies Can Suck It

Troll sparyBy Zack Gonzales

The rumor mill goes round and round - autism is just being diagnosed more; recovery isn't real; nothing but quack treatments; Jenny McCarthy's son never had autism. It's exhausting. Autism is an epidemic. Recovery IS real. There's nothing quack about the treatments for it, other than the people spreading the rumor. And Jenny McCarthy's son WAS diagnosed with autism. She herself has even come out and shot down the rumor with an official statement through Generation Rescue.

I don't understand why there has to be constant negative media about the REAL HOPE that dedicated activists and organizations are trying to provide for people with autism? It's simply ignorance. If you want to be miserable in your life, go be miserable, but don't take hope away from a family in need. Sometimes, hope is all we got! 

As a sibling of a boy with autism, I know what it's like to have hope and I know what it's like to not have hope. And guess what? I'm choosing to go with the hope. And despite what anybody says, autism is treatable. I have seen my brother on biomed improve. And I have seen my brother regress when it was taken away. 

I, myself, have received a lot of shit from trolls online about my brother and about myself. I don't care. I stand by what I say and I support the people that continue to get the message across. I will also do everything in my power to make sure my brother gets to live the best life he possibly can. And no greasy, mid-aged man with a keyboard that has nothing better to do than trash a message of hope is going to stop me. 

Don't get caught up in the senseless nonsense that floats around the internet. Educate yourself and make informed decisions. Does that mean listen to me and everything I say? No. It means READ and pay attention to what you're reading. Get the facts, not the troll Facebook comments. And from there, listen to your gut. And don't lose hope. Without it, what do you have? 

Tweet me @JustPlainZack - let's keep each other motivated. Let's keep the media bullies down. 

Zack

Current Affairs

HealthImpactNews on Nurses Saying No to Flu Vaccines

Mandatory-flu-shot-259x300From HealthImpactNews:

As 2014 begins to unfold, it is becoming clear that the medical care industry is facing a crisis.

We have already reported about how many doctors are refusing to participate in the new Obamacare health insurance exchanges (See: Seven out of every 10 Physicians in California are Rebelling against Obamacare). But another unintended consequence of new medical care legislation is the refusal of nurses to comply with new mandatory flu vaccination requirements. With a nation-wide shortage in nurses already problematic long before Obamacare was implemented, things are only going to get worse.

Experienced nurses across the United States are choosing to lose their jobs rather than submit to forced mandatory flu vaccinations. This began last flu season, in 2012, and we reported many stories of brave nurses standing up for their rights and refusing to submit to mandatory flu vaccinations as a requirement to keeping their jobs. (See: Brave Nurses Lose Jobs to Stand on Principle and Refuse Forced Vaccinations)

Unfortunately, many of our nation’s best nurses were already lost at the beginning of the 2012-2013 flu season as new mandates in Obamacare kicked in, requiring medical care facilities to have a 90% compliance to the flu vaccine as a requirement to receive full reimbursements for Medicare and Medicaid. (See: Are Mandatory Flu Vaccines for Healthcare Workers part of Obamacare and Linked to Financial Reimbursement to Healthcare Facilities?)

The trend towards losing nurses over the mandatory flu vaccine has continued this flu season, in 2013-2014.

 

Jenny McCarthy, John Stone

Best of AoA: Voices for Vaccines and Jenny McCarthy

Karen ErnstBy John Stone

Originally published 5 August 2013 this article showed that the organization which had mounted a petition against Jenny McCarthy appearing on 'The View' had government and pharmaceutical industry ties. It may be helpful to re-visit it in relation revived and completely unfounded allegations against McCarthy that her son did not have autism diagnosis...

Despite Karen Ernst’s repeated insistence that Voices for Vaccines - who recently got up a petition against Jenny McCarthy on Change.com - is an independent parent-led organization speaking up for the vaccine program, the evidence that it was started by the Atlanta based non-profit partner of the Centers for Disease Control, Task Force for Global Health, to promote their joint policies is overwhelming. John Stone (UK editor of Age of Autism) reports:

A few days ago I wrote about vaccine program advocate Prof Dorit Reiss, her unconventional views about agency capture, and her links with Voices for Vaccines “an administrative project” of Task Force for Global Health a partner organization to the Centers for Disease Control and Emory University in Atlanta. The first response to my article was from Karen Ernst a Minnesota based officer of Voices for Vaccines : Reiss

“Voices for Vaccines has as its fiscal agent The Task Force for Global Health. They take in our donations and cut checks for us. Many non-profits who are too small to handle their own 501(c)3 status use fiscal agents in this way; it's quite common. We have absolutely no access to their money, nor do we benefit from their money. Voices for Vaccines is not tied to any pharmaceutical corporation or to any government organization. Thus far, all of our donations have been small and have come from individuals. Thus, the dots you have connected paint an incorrect picture.”

Ernst was again engaged the other day with Steve Schneider's article Big Pharma's faking a "grass-roots" campaign to keep Jenny McCarthy off "The View" in Mark Crispin Miller's News from the Underground blog noticed that a Change.com petition against McCarthy was being promoted by ‘Voices for Vaccines, St Paul, Minnesota’. Ernst was first to respond once more :

“I’m one of the two moms who runs VFV. Your blog post is curious to me, seeing that you are an academic. It seems you consulted Barbara Loe Fisher for her anti-vaccine conspiracy theories about who we are, but you never bothered to actually consult us.

 “I am the person who started the petition. I have been in contact with exactly zero people who work for pharmaceutical companies or who work in the government about the petition. At best, your headline is misleading. The rest of your blog post is inaccurate. You’ve misrepresented our relationship with our Scientific Advisory Board and our fiscal agent.”

For the record the current Voices for Vaccine website states: Troll doc

Voices for Vaccines was re-launched in early 2013 after two young parents, Karen Ernst and Ashley Shelby, volunteered to lead the organization in rallying parents of immunized children to combat vaccine misinformation and increase immunization rates. In 2010, Shelby and Ernst founded the blog Moms Who Vax, which offers resources on vaccine information, commentary, and first-person stories from parents who immunize. They are currently working to develop a new organization, the Minnesota Childhood Immunization Coalition.”

The name ‘Voices for Vaccines’ rang a bell but I could not immediately find any pre-2013 references on Google. The web archive was rather more helpful, however, with the earliest page holding any text dating from 13 May 2008 (passages in bold are my emphasis):

Continue reading "Best of AoA: Voices for Vaccines and Jenny McCarthy" »

Cathy Jameson

My Autism Theme Song

Retro pink radioBy Cathy Jameson

I listen to quite a bit of music.  It accompanies me in the car and while I’m home.  It’s almost always on when I write.  Music gets me motivated, inspires me and relieves some of the anguish and anger I sometimes feel.  Studies have shown that music can help lower stress, improve memory and reduce physical pain and lowering anxiety.  It also has had a positive effect for those who suffer with depression, seizures and attention issues.  I’ve always appreciated music, and I’m glad to hear that it offers solace to those who have a difficult medical diagnosis. 

What does this have to do with autism?  I’m sure some of the conditions our children have can benefit from music including through Music Therapy.  I know that my son is calmer when he’s got his favorite songs playing in the background.  Ronan enjoys it when I sing to him too.  Sometimes I sing his favorite nursery rhymes while other times I make up silly lyrics as I go.  He stays engaged with me longer when I’m singing, and I relish every moment we have together. 

When I’ve got my own music on, I find the lyrics of the songs I tune into very suiting for where I am in life.  Songs I particularly like, and could easily refer to as my theme songs, are Journey’s Don’t Stop Believing and Muse’s Uprising.  I’ve been known to crank either one of those songs and lose myself in the words (while dancing in my kitchen).  My kids love to hear these particular songs, Ronan included.  When they hear them, they know that Mommy’s gearing up to get some important things done. 

My kids have a bit of the music bug in them, but I never realized how much music has touched Ronan’s siblings until just a few weeks ago.  That’s when my typical son said he wanted to sing the song Sara Bareilles’ Brave to Ronan.      How we’d love it if words would simply just fall out of Ronan’s mouth. 

Ronan has a song he chooses to listen to every now and then, too.  He plays Twenty One by the Cranberries on his iPad.  He listens to this line of the song, “Leave me alone, leave me alone, leave me alone,” over and over again several times and for a few days in a row.  It makes me sad to hear him replay that part of the song.  Not every day is an easy day for that kid, though, so I give him the space and time he needs knowing when he’s ready he’ll invite me back in.  When he invites me back in, the music choices we both pick have more upbeat and encouraging lyrics.

The songs I’ve been playing these last few weeks aren’t my usual get-up-and-dance tunes.  They have more of a dark undertone.  Like Ronan, I go through phases wishing I could tell people to leave me alone.  Part of it is because someone told me recently that I sounded kind of angry about how things have gone for Ronan.  Well, I am kind of angry.  He’s had to endure a heck of a lot for a long time now.  The kid works his butt off making gains at a fraction of the pace that typical kids.  I don’t like the position he’s in nor how he got there.  I don’t like how hard this is for him or for me for that matter.  I hate that Ronan’s childhood has been destroyed and how his future doesn’t look so bright at the pace we’re going.  I’m allowed to feel upset and would expect to be given the chance to say so even if I’ve said it once or twice already.  I don’t spout anger without reason.  I offer it as a hard lesson learned and as a warning.  Call it righteous anger or just spitting mad; I say what needs to be said.  And then I play some music hoping to let go of the negative energy.

Continue reading "My Autism Theme Song" »

Dan Olmsted, Dan Olmsted

Weekly Wrap: Autoimmunity and Autism -- Twin Epidemics But a Common Cause

AofA Red Logo Ayumi YamadaBy Dan Olmsted

It's a useful coincidence that autism and autoimmunity start with the same three letters, in both cases because they derive from the Greek word for self, as in aut-obiography. The self of autism is trapped by developmental mayhem; the one in autoimmunity is turned against itself, mistaking its own physical home for an enemy invader.

Autoimmunity, of course, may be at the heart of autism, when the infant's immune system is goaded by the stimulation of excessive vaccination, organic mercury exposure, and other environmental triggers into launching damaging attacks. That, at least, is what we believe at Age of Autism.

So it's fascinating to watch more and more observers notice that -- autism completely aside -- we are in the midst of a tidal wave of autoimmune illnesses that young adults find themselves coping with, as if they were nursing home patients  whose defenses were going haywire in the inevitable decline into senescence and death.

The common theme: something is happening here, and we need to know what it is.

AOA's Anne Dachel drew my attention this week to an article in The Atlantic titled "Living Sick And Dying Young in Rich America"

by Leah Sottile, in which she describes her youngish husband Joe's battle with something called Ankylosing Spondylitis, which Wikipedia tells us "is a chronic inflammatory disease of the axial skeleton with variable involvement of peripheral joints and nonarticular structures. AS is a form of spondyloarthritis, a chronic, inflammatory arthritis where immune mechanisms are thought to have a key role."

Sottile realizes she and her husband are not alone: "Almost all of our friends are sick, too. When we met our friend Missy Narrance, Joe found solace in talking to her about his health. She’s 29 and has been battling lupus and fibromyalgia for the past 10 years."

And on and on. "In our close group of friends—who range from 25 to 35 years old—we know people with everything from tumors to chronic pain. Sometimes our conversations over beers on a Friday night turn to discussions of long-term care and miscommunication between doctors."

This is a valuable -- incredibly valuable -- observation. We need a widespread recognition that too many people are sick in disturbing new ways. So Sottile can be forgiven a conventional and not-so-valuable discussion of possible causes, from supposedly dangerous biofuels to the widespread but nonetheless wackadoodle hygiene hypothesis to the facts that people don't exercise and eat a lot of crap -- processed macaroni and cheese comes in for special scorn (in which case, I'm a dead man!). There's also this:

"Despite the fact that America shells out more money on healthcare than any other country in the world, according to a report by the Centers for Disease Control and Prevention—and a hefty 75 percent of those dollars are going toward aiding people with chronic conditions—almost half of American adults had at least one chronic condition in 2005."

You, dear AOA reader, will recognize the anomaly there -- it is probably not "despite" all this healthcare, aka toxic medical interventions, but in large measure because of them that this "emergency" of chronic illness, as Sottile properly labels it, is occurring. (Quoting the CDC on this, ground zero for the bloated vaccine schedule, is especially rich.)

Continue reading "Weekly Wrap: Autoimmunity and Autism -- Twin Epidemics But a Common Cause" »

Did Dr. Ben Goldacre's Bad Science Forum Attacks Lead to Suicide?

 Excerpted ChildHealthSafety in the UK (HERE).

A patient committed suicide after an anonymous malicious complaint was made by Dr Stuart Jones to the UK’s General Medical Council about the patient’s treating physician, a disciplinary tribunal was told. Dr Stuart Jones was at the time a member of Dr Ben Goldacre’s BadScience Forum. The physician concerned sometimes employed treatment methods which were not those conventionally employed by others but which apparently reaped benefits for patients.

 After making the complaint to the GMC about the patient’s doctor, Dr Stuart Jones wrote on May 19th 2010 on Dr Ben Goldacre’s BadScience Forum to other forum members:

" Yup, that’s exactly why I complained actually, to give SM a bucket load of administration to wade through and increase anxiety levels in her patients, very pleasurable in deed!”

 The patient, who was suffering with chronic fatigue syndrome at the time [also known as ME] killed himself, according to evidence from his doctor, because he mistakenly believed his doctor was no longer allowed to treat him.

 Members of Dr Ben Goldacre’s Badscience Forum are encouraged by Dr Ben Goldacre to take direct action and get involved.  This has included some members launching online attacks on medical professionals who employ treatment modalities others in mainstream medicine do not. BadScience Forum members are also encouraged to make complaints to a large number of regulatory bodies all the time.

 In fact Dr Goldacre encourages his BadScience Forum members to get very, very involved:

"The time for talking has passed. I draw the line at kidnapping, incidentally.”

 Dr Ben Goldacre is a psychiatrist and columnist for the UK’s Guardian newspaper where his column is devoted to what he calls BadScience.

Dr Stuart Jones’ complaint resulted in the temporary suspension by the GMC of the patient’s doctor.

 The GMC prosecution of the deceased patient’s treating doctor was dropped abruptly by the GMC.  Dr Stuart Jones was in turn prosecuted by the Health and Care Professions Council.  He was subjected to a very minor punishment of merely a two-year Caution Order.  That two year caution order expired two weeks ago on 20th December last.

 Between 1st March 2009 and 26th October 2010 Dr Stuart Jones, posting anonymously on Dr Ben Goldacre’s BadScience Forum as “Jonas“, made numerous disparaging remarks about the patient’s treating physician.

 The career of the patient’s doctor was nearly destroyed in addition to the patient losing his life after Dr Stuart Jones described the doctor as a ‘deluded, pill-peddling quack’ the disciplinary tribunal hearing was told. Dr Stuart Jones also wrote on the BadScience website that the patient’s doctor, who specialises in treating chronic fatigue syndrome, “lulled patients into a dangerous world of make-believe pseudo-science”.  The Health Professions Council heard evidence that Dr Jones’ messages were “defamatory, derogatory and disparaging” and had a detrimental effect on the doctor’s professional and personal life.

Continue reading "Did Dr. Ben Goldacre's Bad Science Forum Attacks Lead to Suicide?" »

Anne Dachel

Dachel Media Review: Adults with Autism

Online newsBy Anne Dachel

Jan 31, 2013, San Jose Mercury News: Long-term needs of adults with autism is focus of Jan. 10 meeting

 

Morgan Autism Center is hosting a "coffee klatch" on Jan. 10 that will look at "Adult Housing and Lifespan Care Solutions Initiative."

Scott Badesch, president of the Autism Society of America, will be on hand for the informal discussion about the adult housing and services shortage crisis in California and across the United Sates.

Continue reading "Dachel Media Review: Adults with Autism" »

Current Affairs

American Military Families Autism Support Salutes Sarah Stockwell As Person of the Year

Military ribbonsPlease join us in wishing Age of Autism contributor Sarah Stockwell (Military Kids with Autism Face Special Challenges and Tricare Going AWOL on Military Autism Families?) congratulations on being named the AMFAS Person of the Year for 2013.  From the AMFAS site:

About

American Military Families Autism Support is a grassroots effort started in 2008 by military families, for military families, providing news, information, contacts and options for military families dealing with autism spectrum disorder. Due to the nature of military life and the challenges of autism, these families often experience additional stressors over non-military families.

As many of you may have encountered during your autism journey, your attempts to find information and support is often difficult. This site is about one thing: your family.

The Navy, Army, Air Force, Marines, and Coast Guard have many things in common, but also many things that differ including care and services for special needs families. AMFAS was created because of the challenges families had making sense of what really applies to them.

AMFAS is not a corporation, a fund-raising machine or a site created using money or outsourcing to interns. We are miltiary families who have experienced the intricacies of care, both on and off installations. We do not look to raise money, just support for military families. AMFAS serves as a starting point for a military family with a newly diagnosed child.




Mission

Continue reading "American Military Families Autism Support Salutes Sarah Stockwell As Person of the Year" »

Julie Obradovic

Best of: White Suburban Moms Public Enemy #1

White picket fence my ideal home.jpg1
We ran this post in early November, but really? It needs it needs a permanent spot on the site.  We are not going away - Warrior Moms.   Ever.  Happy 2014 - let's roll our sleeves up one more turn and get busy.

By Julie Obradovic
 
There’s a theme playing out in our society, and it’s not a good one: white suburban moms are the enemy.
 
It started a few months ago with a tweet from Dr. Nancy Snyderman. She was addressing the fact that studies have shown the parent most likely to refuse or question vaccinations for her children is a highly-educated white mom.
 
She wanted everyone to know that we are a well-meaning bunch, but that we are wrong.
 
It was ridiculously condescending and reeked of racism. Are we seriously to believe mothers of color don’t have questions about vaccines either?
 
But for the most part the tweet and what it implied…that we stereotypical silly little college-educated white moms are seriously misguided and endangering our children and society…went unnoticed outside of the vaccine-safety movement.
 
But it has happened again, and this time, not in the form of a tweet most people will never see or pay attention to. This time, it came from the federal government; specifically from the mouth of Department of Education head, Arne Duncan.
 
While addressing criticism of the Common Core, he speculated what was behind it:

 “It’s fascinating to me that some of the pushback is coming from, sort of, white suburban moms who — all of a sudden — their child isn’t as brilliant as they thought they were and their school isn’t quite as good as they thought they were, and that’s pretty scary,” Duncan said.
 
Now I’ve been an outspoken advocate in perhaps one of the nastiest controversies out there for almost ten years. I’ve heard and read an awful lot of insults during that time, Dr. Nancy’s not withstanding. Anything from being a “flat-earther” to being so stupid it’s no wonder my special-needs child has problems.
 
I try not to pay attention to those things anymore, but every once in a while something catches me off guard. Mr. Duncan’s comments did just that.
 
It wasn’t just that as a teacher with 17 years experience and two master’s degrees in education that I know first hand what the real concerns are from both sides of the desk, and that it has absolutely nothing to do with worrying about the perceived brilliance of a child or value of a school. It was that his comment is so far off from reality that it’s not just insulting, it’s frightening: he’s apparently completely disconnected from what teachers and parents are actually worried about.

Continue reading "Best of: White Suburban Moms Public Enemy #1" »

Early Autism Diagnosis No Substitute for Prevention

NewbornDec 30, 2013, CDC study says children with autism could be diagnosed earlier

The Centers for Disease Control and Prevention (CDC) recently released new project findings on the prevalence rate of 1 in 32 Somali children with autism spectrum disorder (ASD) in Minneapolis. While the report says that Somali children with ASD are more likely to have cognitive disabilities and more significant disabilities than all other racial groups, the data say that the rate of autism in the Somali population is about the same as in the white population (1 in 32 vs. 1 in 36). The report also states that children who have autism aren't identified as early as they could be.

"This new data from the CDC indicate potentially higher rates of autism spectrum disorders in distinct populations than the national numbers, clearly show that more research is needed to better understand autism, and again makes the case that additional funds must be made available for services and supports for children with autism and their families.

"The CDC continues to do important work in this area, shining a bright light on what families associated with The Arc and our chapters experience everyday - autism spectrum disorders touch so many people, of all cultures and backgrounds, and we must do more to support them to achieve their goals and to foster an inclusive society. The Arc is committed to families of all backgrounds in our efforts to serve and support people with disabilities, through our network of 700 chapters across the country," said Peter Berns, CEO of The Arc.

"About a third of individuals and families using advocacy services from The Arc Greater Twin Cities are from multicultural families," said Kim Keprios, The Arc Greater Twin Cities' chief executive officer. "We have been working hard to make connections in the Somali community because
we know Somali children who have autism are not being diagnosed as early as they could be and therefore not getting critical services. Anyone who might benefit from The Arc's assistance in getting a diagnosis, receiving help with special education issues and more, is encouraged to call us at 952-920-0855 or visit www.arcgreatertwincities.org."

Continue reading "Early Autism Diagnosis No Substitute for Prevention " »

Anne Dachel

Dachel Media Review: Communication Breakdown

Online newsBy Anne Dachel

Read Anne's commentary after the jump.

Dec 31, 2013, Forbes: Autism 2013: Communication Breakdown

Dec 30, 2013, InsightNews.com: CDC study says children with autism could be diagnosed earlier

Continue reading "Dachel Media Review: Communication Breakdown" »

Anne Dachel

The Tragically Hip, Chronically Sick: America's Young

America's Young
On Dec 19, 2013, The Atlantic published the story, Living Sick and Dying Young in Rich America--Chronic illness is the new first-world problem, by Leah Sottile.   It wasn’t about autism specifically, but everything about it related to what the autism epidemic is doing to our kids.
 
The writer started by telling us about her husband, Joe Preston, 30, and his struggle with having Ankylosing Spondylitis, a serious inflammatory condition.  From there she expanded into the broader picture.  “But here’s the thing: We recently realized we weren’t alone. Almost all of our friends are sick, too. When we met our friend Missy Narrance, Joe found solace in talking to her about his health. She’s 29 and has been battling lupus and fibromyalgia for the past 10 years.”
 
Sottile asked the question, “Do we know so many people who are dealing with pain because people are just getting sicker in general?” And, as she discovered, the answer is, YES, THEY ARE.   Chronically ill people, like her husband are “one of America’s biggest health emergencies. And it’s one that many people say we’re not prepared to deal with.” (That last line reminded me of what we often say about the impact of autism.)  
 
Sottile cited a grim statistic from the Centers for Disease Control and Prevention: “Almost half of American adults had at least one chronic condition in 2005.”  I’m sure that number has only gotten worse in the last nine years.  We’re talking about everything from autoimmune diseases like arthritis and lupus, to obesity, fibromyalgia, heart disease, and diabetes.  Incredibly, one in five Americans now has arthritis, according to the CDC and the numbers are increasing.  Officials project that today’s 46 million arthritis suffers will be 67 million by 2030.  (No wonder we’re seeing all those Humira ads on TV.)
 
If this situation isn’t bad enough, Sottile went on to tell us, “It’s not just that Americans are getting sicker—it’s that young Americans are getting sicker. A 2013 report by the National Research Council and Institute of Medicine echoes the shock of that fact. ‘The panel was struck by the gravity of its findings,’ it reads. ‘For many years, Americans have been dying at younger ages than people in almost all other high income countries.’”
 
The story noted that the state of America’s health was the subject of a US Senate hearing last month.    At the hearing, as shown on the video link, Senator Bernie Sanders stated, “When we found that female mortality rose in 43 percent of US counties between 1992 and 2006 that is a profound reality that has got to be dealt with right here in the nation’s capital, Washington DC.”  The hearing strongly linked Americans' poor health to poverty.     
 
The bleak reality that America is now the land of the chronically ill and disabled can no longer be denied and it doesn’t involve just poor people. Sottile pointed out, “Women are less likely to live to age 50 if they’re born in the United States than other high income countries.”
 
Sottile quoted Dr. Steven Woolf, director of the Center on Society and Health at Virginia Commonwealth University, who helped prepare the NAC/IOM report:

We analyzed the data by a variety of social classes and have found that the problem is pervasive. Rich Americans die earlier than rich people in other countries. College-educated people die earlier than college-educated people in other countries. It’s misguided for people who are better off and doing well to think that this is someone else’s problem.

‘It’s very concerning.  We are living shorter lives than people in other countries. We’re sicker than people in other countries.’

Sick Americans also affect our economy.  Experts are worried that sicker workers mean less production.  

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