New Autism Speaks video: pissing people off all over the place

Different people can see the same thing and get something very different.

Autism Speaks, an advocacy group promoting the research for a cure, released a video for a World Focus on Autism event that coincided with the opening of the U.N. General Assembly in September. The video is called "I am Autism" and has raised concerns in the autism community.

The video as written by Grammy-nominated songwriter Billy Mann and directed by Academy Award–winning director Alfonso Cuarón who both have children with autism. The video shows a series of images of children with autism, accompanied by an ominous voice-over: "I am Autism ... I know where you live ... I live there too ... I work faster than pediatric AIDS, cancer and diabetes combined ... And if you are happily married, I will make sure that your marriage fails."

The tone of the video has added strain to an already touchy relationship between many adult with high functioning autism and the largest autism advocacy group.

According to a recent Time article, some autistic "self advocates" are furious over the tone of the video. "We don't want to be portrayed as burdens or objects of fear and pity," insists Ari Ne'eman, president of the Autistic Self-Advocacy Network, a 15-chapter group he built while attending college at the University of Maryland, Baltimore County. "Apparently, should my parents divorce, it's all my fault," says Ne'eman, who received a diagnosis of Asperger's syndrome, a relatively mild form of autism, at age 12.

Ne'eman's group has organized protest rallies around the country. These advocates argue that if Autism Speaks had more people with ASD on its board, its messages would be more sensitive to the individuals it seeks to help, and it might also devote more resources to improving services to people with autism now — as opposed to basic research and genetic studies that may not pay off for years.

"Groups like Autism Speaks choose to use fear and stigma to raise money, but very little is going toward services, research into improved educational methodologies and things that have a practical impact on our lives," Ne'eman charges. He notes that other disability groups have moved away from using fear and pity in their media campaigns.

Peter Bell, executive vice president of Autism Speaks, said the video got plenty of positive responses from the autism community. "But we realized it did hurt a certain segment of the population, which is why we removed the video link from our website," he said.

The video, Bell said in an interview, is a personal expression by Mann and Cuarón, each of whom has a young child with autism. "They are at that stage of life where they are grieving and unsure what the future holds," he said.

Bell admitted that Autism Speaks does not have any individuals with autism currently serving on its board. "We are looking at adding individuals with autism to various advisory committees," he said. The group is also initiating a better outreach to adults with autism.

It is obvious that both sides are really working toward the same thing; working to raise awareness and assure help for all people with autism. In future let's hope their good efforts can be combined.

What do you think? Did the video go too far?

What about these spoofs? Did they go too far?

Alterntive autism treatment: pot?

Yet another warrior parent is bravely stepping out front to try new treatments for her son with autism.

Marie Myung-Ok Lee's 9-year-old son was so violent, aggressive and destructive that she describes it only as the "dark time". He would repeatedly scratch himself bloody and was continuously covered in scabs and wounds. The school was logging up to 300 aggressive episodes a day with teachers wearing protective padding on a regular basis just to deal with his violent tantrums. It had gotten so bad that the school was pushing hard for here to medicate him with a pharmaceutical, such as Risperdal, to calm him down.

Last year, Risperdal was prescribed for more than 389,000 children—240,000 of them under the age of 12—for bipolar disorder, ADHD, autism, and other disorders. Yet the drug has never been tested for long-term safety in children and carries a severe warning of side effects.

From 2000 to 2004, 45 pediatric deaths were attributed to Risperdal and five other popular drugs also classified as “atypical antipsychotics,” according to a review of FDA data by USA Today.

Disturbed by the reality of Risperdal, she decided to try something else. With the blessings of her doctor, she applied for and got a medical marijuana license and began to provide marijuana to her son and has been able to see and document the life changing difference.

She baked cookies and made a weak infused tea and has worked hard to find an appropriate dosage and way to administer that worked the best. But the direct evidence for her is how her son is reacting to the new treatment.

"Since we started him on his "special tea," J’s little face, which is sometimes a mask of pain, has softened. He smiles more. For the last year, his individual education plan at his special-needs school was full of blanks, recording “no progress” because he spent his whole day an irritated, frustrated mess. Now, April’s report shows real progress, including “two community outings with the absence of aggressions.”

An eloquent writer, Lee teaches at Brown University and is the author of the novel Somebody's Daughter, and is a winner of the Richard Margolis award for social justice reporting. She has been bravely writing about her first hand experience with this treatment and generously shares them here and here.

Her experience brings up some good questions for our "war on drugs" society. Why is it ok to pump pill after pill into our kids? And more pills to deal with side effects? We don't even really know what the long term side effects are going to be. Yet a mild natural herb is still taboo?

I am not saying every parent should try this for their child with autism but clearly Lee has found something that has helped her son. My hat goes off to her and to all warrior parents who try again and again to find something that will bring some relief for their child.

Neurofeedback: what is it?

I started looking into Neurofeedback after I heard the highly regarded and smart as a whip Thom Hartmann, talking about it on his radio show. Thom has written extensively on ADD/ADHD and had very good things to say about Neurofeedback.

Recently, I heard him interview Nora Gedgaudas from Northwest Neurofeedback about her new book, Primal Body-Primal Mind: Empower Your Total Health The Way Evolution Intended (...And Didn't) and just had to dig a little deeper.

"Neurofeedback is direct training of brain function, by which the brain learns to function more efficiently. We observe the brain in action from moment to moment. We show that information back to the person. And we reward the brain for changing its own activity to more appropriate patterns. This is a gradual learning process. It applies to any aspect of brain function that we can measure. Neurofeedback is also called EEG Biofeedback, because it is based on electrical brain activity, the electroencephalogram, or EEG. Neurofeedback is training in self-regulation. It is simply biofeedback applied to the brain directly. Self-regulation is a necessary part of good brain function. Self-regulation training allows the system (the central nervous system) to function better." As defined by EEGinfo.com

When I first began my research I was interested in autism treatments but found out quickly that Neurofeedback has been known to be helpful in treating many different issues as wide ranging as sleep problems to chronic pain, Post traumatic Stress Disorder to Menopause, anxiety to bi-polar disorders.

"Neurofeedback addresses problems of brain disregulation. These happen to be numerous. They include the anxiety-depression spectrum, attention deficits, behavior disorders, various sleep disorders, headaches and migraines, PMS and emotional disturbances. It is also useful for organic brain conditions such as seizures, the autism spectrum, and cerebral palsy."

I was surprised at how non-invasive this treatment is and the testimonials are riveting. After everything I have read, I am very intrigued.

Have you or a family member had a first hand experience with Neurofeedback? Let me know, I am really curious to hear what you have to say about it.

Treatment strategies for curing autism nutritionally

There are a lot of theories out there on how to treat autistic spectrum kids. Unfortunately, a lot of them sound a little too out there or the results are just not conclusive. There is a lot of snake oil out there and I recommend a good healthy dose of skepticism for parents. But don't let it shut out good, new studies, information and different strategies to try for your own child.

I recently ran across this article by Dr. Mark Hyman in The Huffington Post, titled Why Current Thinking About Autism is Completely Wrong.

His take on autism treatment is interesting.

"The real reason we are seeing increasing rates of autism is simply this: Autism is a systemic body disorder that affects the brain. A toxic environment triggers certain genes in people susceptible to this condition. And research supports this position."

"Dramatic scientific discoveries have taken place during the last 10 to 20 years that reveal the true causes of autism -- and turn conventional thinking on its head. For example, Martha Herbert, MD, a pediatric neurologist from Harvard Medical School has painted a picture of autism that shows how core abnormalities in body systems like immunity, gut function, and detoxification play a central role in causing the behavioral and mood symptoms of autism."

Food allergies, gluten intolerance, toxicity, vitamin and mineral deficiencies; these are the causes of autism according to Dr. Hyman and others. Strategies for treatment were predominantly nutritional; taking gluten out of the diet, reducing the toxins and inflammation in the gut or what he calls the 7 keys to wellness.

In brief, here is Dr. Hyman's strategy to treat autism: Improve nutrition, reduce inflammation, heal the gut, detoxify

Step 1: Fix the Gut and Cool the Inflammation There

This step included a number of different tactics including:

• Taking away gluten and other food allergens

• Getting rid of his yeast with anti-fungals

• Killing off the toxic bacteria in his small intestine with special antibiotics

• Replenishing healthy bacteria with probiotics

• Helping him digest his food with enzymes

Step 2: Replace the Missing Nutrients to Help the Genes Work Better

• Added back zinc, magnesium, folate, and vitamins A, B6, B12, and D

• Supported his brain with omega-3 fats

Step 3: Detoxify and Reduce Oxidative Stress

• Once biochemistry and nutrition is tuned up, we detoxify and reduce oxidative stress.

Autistic parent sues California Department of Managed Health Care

Could this be a sea change?

It seems more and more folks are stepping up and calling foul on not covering needed therapies for autistic kids.

Too loud to ignore, they won't be able to do it anymore.

From the Autismeducationsite.com:

The mother of an autistic child joined Consumer Watchdog and its attorneys today to announce a lawsuit against the California Department of Managed Health Care (”DMHC”), the Schwarzenegger Administration agency responsible for regulating many of California’s health insurers. The suit alleges that the DMHC has wrongfully allowed insurance companies to refuse to pay for autism treatments, resulting in the denial of critically needed, medically necessary treatment for autistic children.

The suit, filed by Consumer Watchdog and Strumwasser & Woocher LLP, alleges that the DMHC, and its Director Cindy Ehnes, recently changed the state agency’s policy to permit insurers to deny coverage for Applied Behavioral Analysis (”ABA”), an essential treatment for autism, in plain violation of the California Mental Health Parity Act. That law requires health insurers to cover and pay for all medically necessary treatments for autism, including ABA. If successful, the suit would require the DMHC to bar insurers from refusing to cover medically necessary ABA treatments. The suit also seeks to compel the DMHC to turn over records that would expose the full extent of the DMHC’s violations of the California Mental Health Parity Act and the Knox-Keene Act.

“Californians, including those stricken by autism, and their parents and caregivers, expect regulators to enforce the law, not to side with insurance companies seeking to boost their profits by denying patients the care they need,” said Harvey Rosenfield, founder of the non-profit advocacy group Consumer Watchdog and author of the landmark insurance reform initiative Proposition 103. “Governor Schwarzenegger, a longtime and vocal supporter of the Special Olympics and developmentally disabled children, will now have to explain in court why his administration is allowing health insurers to evade state mental health laws and shift health care costs to already beleaguered taxpayers.”

Blue Cross Settles $1 million autism suit

Over 100 families to recover autism therapy fees after Blue Cross refused claims.

From Justicenewsflash.com:

Detroit, MI(JusticeNewsFlash.com)–Blue Cross Blue Shield of Michigan settled with about 100 plaintiff’s for $1 million in Detroit’s U.S. District Court regarding unpaid autism therapy. According to the Attorney General, families paid $10,000 for behavioral therapy treatments at Beaumont Hospital for their young autistic children. The parents and families of the autistic kids paid $10,000 for the specialized, needed therapy. The settlement will help families who paid for the costly treatment at Beaumont Hospital, Royal Oak, since 2003.

Blue Cross Blue Shield of Michigan will now offer the behavioral treatment for young autistic children who are covered under their parent’s group mental health policies provided by employers. The insurance coverage will be available to children between the ages of 2 and 5 years old for up to 12 weeks of treatment. This is only applicable if the parent’s employer offers mental health coverage through Blue Cross.

JusticeNewsFlash.com news for Michigan insurance litigation lawyers.

Toxic chemicals: a serious suspect in the autism outbreak

Great article. Depressing as heck though.

I just excerpted a tiny bit for you in my post. Please read the whole thing. In fact, read all of Harvey Karp's articles on Autism here.

From the Huffingtonpost.com:

Are Children with Autism..."Male-adjusted"?

Our increasing exposure to EDCs lends support to a new hypothesis about the cause of autism, called the "extreme male theory." This theory, proposed by Dr. Simon Baron-Cohen and colleagues, speculates that autism is caused by something changing a fetus' hormonal balance that then leads to over-masculinization of the developing brain.

Could that "something" be the slurry of hormone-altering chemicals we're exposed to every day? Are EDCs the reason autism-type disorders are 4-9 times more common in boys? (Vaccine side effects never show such lopsided impact on boys versus girls...a glaring fact that is totally ignored by those promoting the vaccine theory of autism.)

The "extreme male theory" has been supported by two interesting bits of evidence: 1) fetuses with slightly elevated levels of testosterone grow up acting extra-male (more interested in things than people, slow language development, etc.); 2) children with autism -- boys and girls -- show extra-male characteristics (e.g. poor social ability, language delay).

Here is where the very interesting link to EDCs comes into play: EDCs often act as weak estrogens and estrogen feminizines the body, but in a fetus' developing brain estrogen actually has the opposite effect...it causes masculinization.

For now, these ideas are just interesting theories, but the evidence is concerning. We urgently need more research to discover whether EDCs, or other chemicals, are linked to the worldwide rise in autism. Fortunately, on that front, there is very good news to report. Thanks to a dedicated group of pediatricians -- members of groups like the AAP and CDC -- the National Children's Study (NCS) was launched in January 2009.

Prenatal Ultrasound and the alarming increase in Autism

Hat tip to a blog I regularly read, If I were in your shoes..., who made this link available a few days back.

I just couldn't stop thinking about it.

Could the increase in Autism have something to do with the mainstreaming and increase of Prenatal Ultrasound use?

Interesting article.

From Midwifery Today:

In May 2006, figures from the Centers for Disease Control (CDC) confirmed what too many parents and educators already knew: The incidence of autism is high, making it an "urgent public health issue," according to Dr. Jose Cordero, director of the CDC's National Center on Birth Defects and Developmental Disabilities. Only 12 years ago autism spectrum disorder (ASD) was so rare that it occurred in just one in 10,000 births.(1) Today ASD, which is characterized by a range of learning and social impairments, now occurs in one in 166 children (2)—with no sign of leveling off.

The steep increase in autism goes beyond the US: It is a global phenomenon, occurring in industrialized nations around the world. In the UK, teachers report one in 86 primary school children has special needs related to ASD.(3)

The cause of autism has been pinned on everything from "emotionally remote" mothers (since discredited) to vaccines, genetics, immunological disorders, environmental toxins and maternal infections. Today most researchers theorize that autism is caused by a complex interplay of genetics and environmental triggers. A far simpler possibility worthy of investigation is the pervasive use of prenatal ultrasound, which can cause potentially dangerous thermal effects.

Health practitioners involved in prenatal care have reason to be concerned about the use of ultrasound. Although proponents point out that ultrasound has been used in obstetrics for 50 years and early studies indicated it was safe for both mother and child, enough research has implicated it in neurodevelopmental disorders to warrant serious attention.

At a 1982 World Health Organization (WHO) meeting sponsored by the International Radiation Protection Association (IRPA) and other organizations, an international group of experts reported that "[t]here are several frequently quoted studies that claim to show that exposure to ultrasound in utero does not cause any significant abnormalities in the offspring. …However, these studies can be criticized on several grounds, including the lack of a control population and/or inadequate sample size, and exposure after the period of major organogenesis; this invalidates their conclusions…."(4)

Early studies showed that subtle effects of neurological damage linked to ultrasound were implicated by an increased incidence in left-handedness in boys (a marker for brain problems when not hereditary) and speech delays.(5) Then in August 2006, Pasko Rakic, chair of Yale School of Medicine's Department of Neurobiology, announced the results of a study in which pregnant mice underwent various durations of ultrasound.(6) The brains of the offspring showed damage consistent with that found in the brains of people with autism. The research, funded by the National Institute of Neurological Disorders and Stroke, also implicated ultrasound in neurodevelopmental problems in children, such as dyslexia, epilepsy, mental retardation and schizophrenia, and showed that damage to brain cells increased with longer exposures.(7)

Dr. Rakic's study, which expanded on prior research with similar results in 2004 (8), is just one of many animal experiments and human studies conducted over the years indicating that prenatal ultrasound can be harmful to babies. While some questions remain unanswered, based on available information, health practitioners must seriously consider the possible consequences of both routine and diagnostic use of ultrasound, as well as electronic fetal heart monitors, which may be neither non-invasive nor safe. If pregnant women knew all the facts, would they choose to expose their unborn children to a technology that—despite its increasingly entrenched position in modern obstetrics—has little or no proven benefit?

Tiny microphone brings autistic boy's abuse to the light of day

Ok. Prepare yourself folks; this story is a particularly ugly one.

As the mother of a child with severe speech delays, this is one of my personal horrors; your child is not being able to tell you if someone is hurting them or is not treating them well.

That is why I am so intrigued by this tiny microphone. Wouldn't it be interesting to hear what your kid hears at school each day?

From 11Alive.com:

ATLANTA -- Stefan is an 11-year-old boy with Autism. A judge ruled he was physically and verbally abused at school.

11Alive has learned from the Deputy Superintendent of Atlanta Public Schools that the teacher involved in this story is "no longer in the classroom."

Stefan cannot speak. He has Autism, and is non-verbal. He could not tell his parents -- couldn't tell anyone -- what happened to him. But he had a mother who believed, before this happened, that something was terribly wrong at his school.

Stefan went to Margaret Mitchell Elementary School, Buckhead, where he was doing well, but he was transferred to the Marshall School in DeKalb County in August 2008, due to renovations.

That's when the Ferraris say things started to fall apart. "I knew something was really wrong for the first time on September 8th," said Stefan's mother, Carolyn Ferrari.

That's when she said Stefan came home with bloody scratches, bruises and ripped shorts. His behavior over the next month deteriorated. "It was getting worse and worse," Carolyn said.

Marcelo and Carolyn Ferrari say they repeatedly told school officials they were concerned. So the mother of a boy without a voice found a way to give him one.

"It's about the size of a quarter," Carolyn said about a microphone she sewed into Stefan's shirt. She sent him to school with it on October 21.

It would be his last day at Marshall.

Research suggest Children can recover from Autism

From Newsnet5.com:

Leo Lytel was diagnosed with autism as a toddler. But by age 9 he had overcome the disorder.

His progress is part of a growing body of research that suggests at least 10 percent of children with autism can "recover" from it -- most of them after undergoing years of intensive behavioral therapy.

Skeptics question the phenomenon, but University of Connecticut psychology professor Deborah Fein is among those convinced it's real. She presented research this week at an autism conference in Chicago that included 20 children who, according to rigorous analysis, got a correct diagnosis but years later were no longer considered autistic.

Among them was Leo, a boy in Washington, D.C., who once made no eye contact, who echoed words said to him and often spun around in circles -- all classic autism symptoms. Now he is an articulate, social third-grader. His mother, Jayne Lytel, says his teachers call Leo a leader.

The study, funded by the National Institute of Mental Health, involves children ages 9 to 18. Autism researcher Geraldine Dawson, chief science officer of the advocacy group Autism Speaks, called Fein's research a breakthrough.

"Even though a number of us out in the clinical field have seen kids who appear to recover," it has never been documented as thoroughly as Fein's work, Dawson said. "We're at a very early stage in terms of understanding" the phenomenon, Dawson said. Previous studies have suggested between 3 percent and 25 percent of autistic kids recover. Fein says her studies have shown the range is 10 percent to 20 percent. But even after lots of therapy -- often carefully designed educational and social activities with rewards -- most autistic children remain autistic.

Recovery is "not a realistic expectation for the majority of kids," but parents should know it can happen, Fein said. Doubters say "either they really weren't autistic to begin with ... or they're still socially odd and obsessive, but they don't exactly meet criteria" for autism, she said.

Fein said the children in her study "really were" autistic and now they're "really not."

University of Michigan autism expert Catherine Lord said she also has seen autistic patients who recover. Most had parents who spent long hours working with them on behavior improvement. But, Lord added, "I don't think we can predict who this will happen for." And she does not think it's possible to make it happen.

The children in Fein's study, which is still ongoing, were diagnosed by an autism specialist before age 5 but no longer meet diagnostic criteria for autism. The initial diagnoses were verified through early medical records. Because the phenomenon is so rare, Fein is still seeking children to help bolster evidence on what traits formerly autistic kids may have in common. Her team is also comparing these children with autistic and non-autistic kids.

So far, the "recovered" kids "are turning out very normal" on neuropsychological exams and verbal and nonverbal tests, she said. The researchers are also doing imaging tests to see if the recovered kids' brains look more like those of autistic or nonautistic children. Autistic children's brains tend to be slightly larger than normal. Imaging scans also are being done to examine brain function in formerly autistic kids. Researchers want to know if their "normal" behavior is a result of "normal" brain activity, or if their brains process information in a non-typical way to compensate for any deficits. Results from those tests are still being analyzed.

Most of the formerly autistic kids got long-term behavior treatment soon after diagnosis, in some cases for 30 or 40 hours weekly. Many also have above-average IQs and had been diagnosed with relatively mild cases of autism. At age 2, many were within the normal range for motor development, able to walk, climb and hold a pencil. Significant improvement suggesting recovery was evident by around age 7 in most cases, Fein said. None of the children has shown any sign of relapse. But nearly three-fourths of the formerly autistic kids have had other disorders, including attention-deficit problems, tics and phobias; eight still are affected. Jayne Lytel says Leo sometimes still gets upset easily but is much more flexible than before.

Perspective on "special"

Not everything has changed since I was a kid.

When I was in 5th grade, the boys and the girls voluntarily sat separately during lunch time. Why? Just because.

Well, it isn't much different for my 5th grader but they are now getting pretty close to starting middle school and things start, only just a little bit at first, to look a little different between the boys and girls.

Yesterday for some unknown reason, a few boys came over to sit with Molly and the other girls. Something about getting away from a messy table or some other such excuse. They larked about, making jokes but one boy began being snarky about a 4th grade boy who was not around at the time and calling him a retard.

Molly piped right up and said, "He has autism, he is not retarded just a bit special."

The boys took that in but continued to snark, "He is so special with his specialness." Jokingly, probably not meaning real harm, maybe just intending to amateurishly flirt with the girls, just trying to get their attention in a ham handed pre-pubescent boy sort of way.

My Molly, my wonderful, intuitive, insightful, empathic big sister to Shea said, "You probably shouldn't say that kind of thing around me because my brother is special too and they can't help it."

That stopped them up short. "Is he retarded?", they soberly ask. "No." says Molly.

"Is he autistic?"

"No."

"What's wrong with him?"

"He has a real hard time speaking. He has to work really hard to make the words come out and still they sometimes sound different. He can't help it. He is special."

"How old is he?"

"Almost 5."

"Wow. That must be hard."

And, then they all moved onto other subjects with a bit more knowledge and hopefully a little bit more compassion.

There are times where I would give absolutely anything to be a fly on the wall or an ant on the lunch table. This was one of the those times.

Autistic man seeks NJ Assembly seat

From PolitickerNJ.com:

(Christopher) Gagliardi, a 28-year-old Englewood resident, was born with infantile (sic) autism. Doctors would eventually advise his mother, Lynda Grace Monahan, to put him in a group home and medicate him with Ritalin....

Gagliardi caught the political bug at an early age, attributing it to his mother's involvement in Robert F. Kennedy's presidential campaign in the 1960's. He wanted to run for governor, but didn't meet the minimum age requirements, and his letter to the Democratic Party expressing interest in being a delegate to the Democratic National Convention was ignored. So Gagliardi figured the legislature was in need of someone who will represent the mentally and physically challenged.

"During the time in the 80's and 90's, people who had challenges were either rejected in society or not recognized for their contributions to society," he said. "But with the recent breakthroughs in civil rights with the physically and mentally challenged, I thought it would be appropriate to stand up and take responsibility."

Gagliardi graduated from Ridgefield Memorial High School in 2002, where he was student council president – the first special education student to ever hold the position, he said.

The bit about the group home reminds me of a line I use when speaking on the subject: Dr. Leo Kanner, who first used the term "autism", told my mom when I was all of 4, "Mrs. KamaAina, your child is autistic. I recommend that you place him in an institution and get on with your life."

Years later, she would eventually heed the learned Dr. Kanner's advice -- but I'm not sure Yale was the sort of institution he had had in mind!

April is Autism awareness month: #1

Meet Rory. He has something to share with you.

Where do we find our answers?

I was thinking about good advise and where we get it. Usually one would take direction from those who have been there before. And, hopefully, we all have access to this. Maybe we are all blogging or reading blogs just for that one reason. Acquiring good advise is golden and worth the search.

Sometimes we are lucky enough to find direction from someone who has literally walked the road.

Therefore, tonight's post belongs to Cale, a profoundly eloquent young man from Spectrum Siblings, a blog written from the perspective of one who is on the Autism spectrum himself. He has a very valuable "1st hand" perspective to share and his wisdom is evident.

In this wonderful post, he advises parents:

• Remember that your child is the same person he was before the doctor said “I think it’s autism”. The diagnosis is not a death sentence, it’s a way for you to learn more about your child and find strategies which will help him be as successful as he can be.
• Don’t become disheartened by the gaps between your child and Nts or your child and some higher functioning autistics. The fact is that a prognosis cannot be made based upon a child’s behavior at two or three. Some will begin to blossom in a few years or even a few months. Some fully functional adults spent their first five years flapping in a corner.
• Autism should not squelch your dreams for your child. You may need to adjust some of your dreams, but there will also be new dreams. And you can wind up amazed at what your son/daughter can accomplish.
• It is important that you find therapies that will help your child. But it will do you or your child no good to beat yourself up over the “I should have seen this before; I should have gotten him into early intervention; I should have X Y Z” The whole notion of a window of opportunity after which the gate shuts closed simply isn’t true. Work with what you can now.
• Know that there is sooo much information out there when you know where to look for it. Connect with a blogger online and follow her links. There are moms with kids at all points on the spectrum blogging about what works for their kids, and there are autistic and asperger’s individuals blogging about themselves. There are books packed dense with information; more than you could read in a lifetime.
• Find support. Raising a kid with special needs is difficult, and going through it alone will only make it worse. Whether it’s through a local support group, on the phone with a caring relative, or on the internet, find someone you can vent to. You can only be a good resource for your child when your basic needs are taken care of.
• Remember your kid is still a kid. Yes, you’ll want to sign him up for every therapy out there, but don’t forget to schedule free time. Time when he can do what he wants without someone trying to teach him at every corner.

Service dog changes life for autistic boy

This is a wonderful story from my home town paper.

A lovely family and the mom is my accountant. Last summer, they came to the community for help with the cost of getting the dog, $13,500 was raised.

Now the dog has arrived! Very sweet story.

From the Vashon Beachcomber:

In the classroom Monday morning, James and Comet already seemed like a team. After the dog’s introduction to the class, James sat at his desk, with Comet lying on the floor by his feet. The dog looked up at Mark and Raven, who held back in the shadows, but mostly he just settled in, apparently clear that this was his new assignment.

James, meanwhile, with his teacher’s help, began to write.

“I brought Comet,” he wrote. “I love Comet.”

He drew a picture — a simple rendition of a dog — and then wrote “DOG” in big, blocky letters next to it.

“Are you happy today?” Wilson asked him.

“Yes. Dog,” he answered.

“Me, too,” Wilson said, smiling broadly. “Me, too.”

When is an Asperger's diagnosis a happy occasion?

When you always knew something was different about you and had never been able to put a name to it. When you wondered if you were the only one in the world who felt a certain way. When you want to help other people understand what life is like on the Autism Spectrum.

Meet Elyse; a 17 year old with a very inspiring story.
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Tri-Valley student triumphs against autism
From Newsminor.com, By Kris Capps

HEALY, AK — Elyse Lynn has a story to tell.

It’s a story that is uncomfortable for some, revealing for others and perhaps therapeutic for Elyse. It is the story of her life as a teenager who suffers from Asperger’s Syndrome, a form of autism.

Elyse, 17, shared her story this week with about 100 teachers at the State Special Education Conference in Anchorage. She told them what it’s like to be a senior at Tri-Valley School in Healy, trying to fit in with her classmates and the world around her.

That’s not as easy as it sounds, but with the help of her teachers and her community, she has found a way to make it work.

People who suffer from Asperger’s want to fit in, but they simply don’t know how to do it. They often are socially awkward and don’t understand conventional social behavior.
To the untrained eye, a child with Asperger’s Syndrome might seem like a normal child behaving differently.

That was the case with Elyse, who always was on a little different wavelength from her peers. It took years to identify her affliction.

Even as a youngster, Elyse knew she was different, but she didn’t know why.
“I guess I knew in elementary school,” she said. “I was always slower putting on my clothes to go outside for recess, and people were getting frustrated with me. They thought I was mentally slow.”

Elyse said she just kept thinking, “Why are these people getting mad at me? I’m not doing anything wrong. I’m just being me.”

It wasn’t until she was 13 years old that she was diagnosed. Elyse was the first to recognize it. She spotted a poster about autism on the bulletin board of the local post office and read the symptoms of Asperger’s Syndrome.

“I think this is what I have,” she told her mom. Her parents, Elwood and Beth, had struggled for years to diagnose Elyse’s condition. They instantly began investigating this new possibility. Soon thereafter, her mother came home with a big smile on her face.
Her mother announced, “Elyse, you have Asperger’s.”

It was Elyse’s a-ha moment. “There was a reason,” Elyse said, reliving that moment of grand relief. “I knew everything happened for a reason. That reason might not be clear at the present time, but it will be revealed eventually.” Finally, she had an explanation for her behavior.
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I encourage you to read the whole article. A very special look into this brave and intelligent young girl's life.

Kaiser sued for discimination against autistic children:"Sham excuses"

News Release:

OAKLAND, Calif. — A class action suit filed today in state court in Alameda County charges that health care organization Kaiser Permanente directs a “blatantly discriminatory” policy against children with autism.

The class action suit, seeking relief on behalf of children with autism and their families who are members of Kaiser, was filed by Disability Rights Advocates (DRA), a Berkeley-based non-profit law center, and Chavez & Gertler, a national class action litigation law firm. Other major counsel are Gerard V. Mantese and John J. Conway. The suit seeks to end discrimination against disabled children and does not request money damages.

Parents of disabled children charge that Kaiser, the largest integrated health care delivery system in the country, has as a matter of policy systematically refused to provide treatment for children with autism. Kaiser’s status as a health care service plan provider, federal and state anti-discrimination law, statutory requirements, and Kaiser’s contract with its enrollees all prohibit Kaiser from implementing blanket refusals to treat children with autism. According to the suit, Kaiser is required to treat autism as fully as it would a heart condition or diabetes, but Kaiser refuses to do so

Background

Autism is a neurobiological disorder that is estimated to occur in one out of every one hundred and fifty births nationwide, and most often appears by age two. People with autism spectrum disorders (ASD) display severely impaired language and communication skills, impaired social interaction, restricted interests, repetitive behavior, resistance to change, obsessive attachment to objects, decreased motor skills, and lack of emotional connection or comprehension. Without proper medical care and treatment, ASD can be a debilitating condition, leading people to grow into adulthood without the ability to perform the most basic functions. With early and proper treatment, however, children with autism can see significant gains in their ability to interact and function in society. Early and effective treatment can also save hundreds of thousands of dollars in future medical costs.

Kaiser’s “sham excuses”

Kaiser cites a variety of reasons for denying treatment to children with autism. These include the excuse that treatment for autism is not a “health care service” and labeling treatment as “educational”. The lawsuit states that each of these reasons is explicitly invalid according to health and anti-discrimination laws, as well as Kaiser’s own Evidence of Coverage. For example, Kaiser systematically denies occupational, physical, and speech therapy to children with autism, despite prevailing opinion in the medical community that these are basic and necessary health services for patients with ASD. Furthermore, Kaiser provides occupational, physical, and speech therapy treatment for other disorders, but not for autism

Negative Effects

The lawsuit alleges several ways in which Kaiser’s policy negatively affects the child, the child’s family, and the public. The complaint refers to a body of research showing that there is a critical window of opportunity for treatment in the development of a child with autism, and that serious damage can occur if the family is denied coverage by its health care provider during this critical window.

Secondly, the medical treatments that Kaiser denies to a child with autism can place significant financial stress on families, who must already bear the strain of caring for a child with autism. It forces parents to weigh the emotional and mental burden of watching their child deteriorate against the financial cost of securing necessary treatment. Many families do not even have the financial means to make this tragic trade off.

Thirdly, denial of treatment puts an unfair strain on the public. Although Kaiser provides speech therapy and occupational therapy to its members for other physical and mental conditions, it insists that children with autism seek those services from publicly-funded school districts and regional centers for people with developmental disabilities, thus directly making taxpayers pay for treatment for which Kaiser is responsible and for which Kaiser collects premiums.

Anna Levine, an attorney for Disability Rights Advocates, commented: “Kaiser claims to help people holistically “thrive,” but denies children with autism basic care. Kaiser’s flagrant neglect of its duties as a health care provider has caused fully-insured families emotional pain, financial hardship, and irreversible damage to their children’s health and development. It’s time we hold Kaiser accountable.”

Mark A. Chavez, co-counsel on the case, commented: “Kaiser’s policy to deny treatment for autism is shameful and unlawful. Kaiser should not be allowed to continue treating children with disabilities unfairly. These children are the most fragile victims of an uncaring corporation, and we can no longer allow Kaiser to let them slip through the cracks.”

Italian study: no connection between Autism and Thimerosal

I know there are many studies out there that seem to prove that vaccines or the mercury preservative "Thimerosal" does not cause Autism. But, I also know there is a literal ton of anecdotal evidence from real life moms and dads who noticed something change in their kids after a routine vaccine.

I am reserving judgment and my opinion for now. But, I would like to see more money and focus on treatment, support and therapies. Plus, if they really don't think it was the vaccines...WHAT THE HELL CAUSES IT THEN!!!!

1 out of every 150 babies is way too many.

From AP/The Seattle P-I:

A new study from Italy adds to a mountain of evidence that a mercury-based preservative once used in many vaccines doesn't hurt children, offering more reassurance to parents.

In the early 1990s, thousands of healthy Italian babies in a study of whooping cough vaccines got two different amounts of the preservative thimerosal from all their routine shots. Ten years later, 1,403 of those children took a battery of brain function tests. Researchers found small differences in only two of 24 measurements and those "might be attributable to chance," they wrote in the February issue of the journal Pediatrics, which was released Monday.

Autistic girl, 8, cuffed after school scuffle

For garsh sake! What is wrong with people? Who cares what she wears to a party? It's a PARTY!! And, she is 8!!! I just shake my head sometimes.

From ABCNews SARAH NETTER

The mother of an 8-year-old autistic girl who was arrested after a scuffle with her teachers said it was horrifying to watch her daughter be led away in handcuffs from her northern Idaho elementary school.

Police in Bonner County, Idaho, charged the girl, Evelyn Towry, with battery after the arrest Friday at Kootenai Elementary School.

Even though prosecutors dismissed the case Tuesday, the family is considering legal action against the school. They say their daughter was physically restrained to the point of causing bruises and is now tormented by memories of the incident.

Spring Towry said she got to the school Friday just in time to see 54-pound Evelyn -- who was diagnosed at age 5 with Asperger's Syndrome, a high functioning form of autism -- being walked to a police car with two officers at her side.

"She started screaming 'Mommy, I don't want to go! What are batteries? What are batteries?'" Towry said. "She didn't even know what she was arrested for."

Towry, who lives in Ponderay, said Evelyn told her that she had been refused entry into a school Christmas party that had been delayed until after the holidays because of a string of snow days, because she refused to take off her beloved "cow costume" -- a hoodie with cow ears and a tail.

Towry said Evelyn, who loves Spongebob Squarepants, told her she was put in a separate classroom away from the party, but when she tried to leave, the teachers told her to stay put. Evelyn did not listen, Towry said, and the adults physically restrained her.

Tukwila School District sued; did not protect autistic boy from bullies

My god.

I guess a few school districts will need to be sued for administrators to take protecting kids from bullies seriously.

From the Seattle Times,

"A discrimination suit has been filed on behalf of an autistic former student in the Tukwila School District, alleging district officials failed to protect him from bullying and tried to declare him a truant when his parents pulled him from classes.

The suit, filed Monday in King County Superior Court, contends the man was the victim of almost daily harassment when he was in the sixth and seventh grades by several boys at Showalter Middle School and now suffers from Anxiety Disorder and Post-Traumatic Stress Disorder.

The boys beat up J.B.M., shoved and pushed him, stole his books, slapped, punched and kicked him, hit him on the head with books, called him disparaging names, spit on him and poured liquids on him, the 17-page complaint alleges.

School officials told J.B.M. to stick up for himself and no action was taken against "the bullies," according to the suit.

Officials then took a recess away from J.B.M. when he yelled at other students and used "inappropriate language," the suit alleges.

They also ignored warnings from an education specialist and district psychologist that J.B.M. was the victim of bullying and that the problem needed to be addressed, the suit says.

At one point, the suit alleges, J.B.M. was told not to contact his mother at school."