How common is it? For many years autism was rare – occurring in just five children out of 10,000. However, since the early 1990s, the rate of autism has increased dramatically around the world, with figures as high as 60 per 10,000. In March, 2012, the US Federal Centers for Disease Control that 1 in 88 children in the US is diagnosed with an ASD.

What is Autism? Autism is a severe developmental disorder that begins within the first three years after conception. Most autistic children look like other kids, but do puzzling and disturbing things which are markedly different behaviors from those of typical children. In less severe cases on the spectrum (Pervasive Developmental Disorder (PDD) or Asperger’s Syndrome), children usually have speech and might even be intellectually gifted, but they have one or more “autistic” social and behavioral problems. People used to think that autism was irreversible. The good news is that there are now a range of treatments that can be really helpful.

Too few pediatricians screen for autism. A 2006 study from Johns Hopkins found that only 8% of primary care pediatricians routinely screened for autism. Lack of familiarity with the screening tools was the primary reason. If your pediatrician isn’t seeing what you see, don’t wait for him/her to come around. If your child is under three, contact your state’s early childhood intervention program and ask for an evaluation. You can also visit a developmental pediatrician or a clinical psychologist trained in diagnosing ASD.

The video is brutal: a young man, pinned face down in four-point restraints, receiving 31 electric shocks over the course of several hours that convulse his body with pain. But this is not Guantánamo or Syria. The electric shocks were delivered in Massachusetts, at the Judge Rotenberg Center (JRC) for autistic, emotionally disturbed and developmentally disabled youth. JRC is currently the only place in the U.S. that is legally permitted to provide this so-called aversive therapy.

Although the Rotenberg Center fought for years to suppress the video, it recently became public as part of a lawsuit filed against the center by the parents of the victim, 18-year-old Andre McCollins. Closing arguments in the case are expected on Monday.

If the plaintiffs’ attorneys did their job, a large settlement against JRC should be forthcoming: res ipsa loquitur (the thing speaks for itself) would seem obviously to be the relevant principle here. But, unfortunately, unless the judgment is big enough to bankrupt the program and shut it down for good, the torture of troubled teens will continue, as it did after other similar cases were settled.

But while the video is horrifying, I find other facts about JRC to be even more disturbing. Together, these facts make an airtight case for shuttering the program, which is opposed by all of the major autism and disability rights organizations and has been called torture by the United Nations special rapporteur on torture.

The first problem is that JRC has been allowed to conduct its skin shock “therapy” for more than four decades, with little more than anecdotes to support its effectiveness.

The center claims that using skin shocks, which are comparable in pain intensity to a bee sting, can help control severe self-injurious behavior like head-banging and cutting, without use of medication. (A reporter who tried the device, however, compared the feeling to “a horde of wasps attacking me all at once.”) On its website, JRC also argues that its punitive approach is twice as effective as using rewards to change behavior, even for the most severe cases.

But over the 40-odd years that it has been operating, JRC has never published a single randomized controlled trial demonstrating the superiority — or even lack of inferiority — of its methods, compared with standard therapy, in a peer-reviewed journal. The research it has published in the scientific literature has all involved case studies: basically stories of less than a dozen patients in each paper who were not randomly selected and whose outcomes were not compared to those of similar patients receiving less torturous treatments.

The FDA would not approve any drug with this sparse a scientific record, let alone one that caused pain as its intended effect. Unfortunately, however, talk and behavioral therapies aren’t regulated and don’t have to meet any scientific standards before they are marketed, even if they are clearly risky.

Of course, many parents of children at JRC have become strong advocates for the program. They believe that the JRC’s approach — barbarous as it may look from the outside — is the only thing that has helped their children avoid self-injury and participate in school. They tell compelling stories about children who had been so dangerous to themselves that they’d caused brain damage, now being able to sit at a computer and learn.

I’d be much more convinced by these claims, however, if I hadn’t already heard similar stories told by dozens of parents of children in other abusive treatments and subjected to quack remedies — ones that are known to be either ineffective or outright harmful or both. The reason the FDA’s approval rules for drugs and other therapies it regulates exist at all is because such extraordinary anecdotal evidence can make useless or dangerous treatments appear to work miracles.

I’d also be less skeptical if JRC admitted only children with the most severe self-injurious behavior, rather than advertising the program broadly as a solution for any teen who is simply “failing in school or refusing to attend or stuck in psychiatric or correctional setting.”

However, I admit that even if JRC limited admissions and had 10 published peer-reviewed randomized controlled trials proving the superiority of its techniques to drugs and positive behavioral treatments, I’d still be loath to recommend it. The most insurmountable problem with JRC involves the corrupting influence of power — especially when that power is wielded in the context of infliction of pain as “helping.”

Virtually all situations in which vulnerable people are under the complete power of others — such as that which exists at JRC — are prone to cultivate abuse: we hear again and again about abuses in nursing homes, prisons, homes for the disabled and teen treatment centers. As Lord Acton once said, absolute power corrupts absolutely.

The principle was first made vivid by psychologist Phil Zimbardo in the notorious Stanford Prison experiment. Within days, healthy people who had been assigned to play the role of prison guards began abusing those who were assigned to be prisoners.

Basically, ordinary people placed in positions of authority without checks or balances will tend to drift towards abusive practices. And they will also tend to “just follow orders” even when those orders involve escalating abuse, as another famous social psychology experiment once showed. At Harvard, researcher Stanley Milgram got dozens of normal people to administer a series of increasingly painful shocks to another human being (actually an actor making pained noises in another room), simply by having a man in an authoritative white coat encourage them to continue. The shockers escalated the pain even though they were told that the shocks could be potentially deadly.

A 2007 incident at JRC illustrates the issue perfectly. A former resident placed a prank phone call in the middle of the night to one of the program’s sites, pretending to be a supervisor. He ordered the staff member who answered to phone to rouse two teens from their beds and deliver dozens of shocks to them, claiming that they’d misbehaved earlier.

For three hours, six staff restrained and shocked the innocent victims — even though the shocks weren’t in the treatment plan, even though they’d never talked to the so-called supervisor before and even though the other residents protested vigorously that no bad behavior had occurred.

When you train people to believe that painful punishments are an acceptable way to control the behavior of others, it’s hard to prevent this kind of harm. Despicable behavior comes to seem acceptable, not worth questioning.

This is especially the case when — as has also happened at JRC — when your staff is not as qualified as it should be. The less educated the staff is about effects like those seen in Zimbardo’s and Milgram’s research, the more likely they are to accidentally replicate it.

Indeed, there are now at least a half-dozen documented cases of programs that use aversive treatments becoming actual cults, in which the program director has gained so much power over the participants and their parents that he can even command bizarre behavior among them, like kidnapping and partner-swapping.

I covered one particularly stunning instance of this in my book Help At Any Cost: How The Troubled-Teen Industry Cons Parents and Hurts Kids. In that case, the director of the KIDS program in New Jersey ordered teens to beat each other, restrain people for hours without bathroom access and had parents and teens kidnap people over 18 who were legally allowed to leave if they fled. He even continued to run program meetings underground after it lost its license. This man wasn’t outside the mainstream either: he had previously directed the anti-drug program that First Lady Nancy Reagan had called her “favorite.”

Rotenberg’s founder and long-time head, Matthew Israel, was forced to step down last year after facing criminal charges for trying to destroy video evidence of the 2007 incident. Perhaps without his leadership, the center will wither naturally, or perhaps a combination of legal settlements and public outrage will finally end this sad story.

What I hope will bring an end to Rotenberg, however, is simple human compassion and the public’s demand that extraordinary claims should require extraordinary evidence — especially when the claims advocate using physical pain to control our most vulnerable children.

Maia Szalavitz is a health writer for TIME.com. Find her on Twitter at @maiasz.

Our mission is to provide life enhancing resources and experiences for kids and families dealing with Autism and Autism related spectrum disorders. All proceeds of this online auction benefit our current campaign, iPads for Autism, which is designed to place iPad communication technology into the hands of non-verbal autistic children.

Visit www.rsiauctionsonline.com or click on the picture to support our cause and place your final bids! Don’t wait till it’s too late…

This auction closes at 9pm tonight, April 19th.

It’s All About Giving – Please help us to give those without a voice the chance to be heard!

Gratefully,

Danny’s Wish

Crys Worley’s dedication to her son is remarkable, and her creativity lends it self to the uniqueness of the disorder. Some find success in art therapy, others in music therapy. For 9 year old Sasha Worley, it’s skateboarding.

The struggles a parent of an autistic child experiences are unique, and unparallel to most caretakers. It is both difficult and trying emotionally mentally and physically– yet simultaneously rewarding. These wonderful people grapple with the everyday challenge of communicating with their child through alternative means each day, while also balancing health, medical, and educational needs. What’s most often overlooked in the mix of needs a parent juggles for their child is the need to provide fun life enhancing opportunities and activities, foster well being, and create social experiences, and memories. This is arguably the toughest, but most crucial part of a child’s life, and it requires one to think outside the box. For this reason, parents of autistic children are my heroes.

Crys Worley is a perfect example of all the above, and takes it one step further- she shares it with others. A.Skate helps her share with other children the experiences that helped her son grow and progress, in hopes that they too might find the same joys and successes. Today 1 in 88 children are affected by autism, and numbers are climbing at almost epidemic rates. As more and more become affected, it’s important we showcase these amazing superheroes, and tell the stories of their incredible journeys.

As a film enthusiast and documentary maker myself I find it righteous that these 2 young filmmakers set out to tell this inspiring tale. They have hit a bit of a lull and need some funds to finish what they started. Please support Ben Duffy and Michael Sassano and donate to the Heart Child film project! Details for donation are here–

http://www.kickstarter.com/projects/42311681/heartchild?ref=card
Also check out their website http://www.heartchildthemovie.com/#!home|mainPage
And join them on facebook! http://www.facebook.com/HeartChild

Thanks! – Dannys sister Kristina

April is National Autism Awareness Month, and it’s been marked by a steady stream of research about the causes of the disorder — including complex genetic factors and the risk from older fathers — and its characteristics, such as the finding that it now affects 1 in 88 children, but that 10% of affected children may outgrow their diagnosis by the time they hit their teens.

Now another study is raising a particularly intriguing theory, given the expanding girth of the U.S. population: that mothers who are obese or have diabetes during pregnancy — these conditions can often go hand in hand — see higher rates of autism in their children.

Researchers at the University of California, Davis, looked at 1,004 children aged 2 to 5 years enrolled in the CHARGE (Childhood Autism Risks from Genetics and the Environment) study from 2003 to 2010. The study included 517 children with autism spectrum disorders, 172 with other developmental disorders, and 315 who were typically developing.

Obese mothers were 67% more likely than mothers of normal weight and with no metabolic disorders to have a child with autism, and they were more than twice as likely to have a child with another developmental disorder — a delay in speech delay, perhaps, or a failure to reach developmental milestones at the appropriate age, according to the study published Monday in Pediatrics.

Moms of children who were not developing typically were more likely to be obese: 21.5% of mothers of children with autism and 23.8% of mothers of children with developmental delays were obese, versus 14.3% of moms of typically developing children.

Mothers with diabetes were 2.3 times more likely to have a child with developmental delays; they were also more likely to have a child with autism, although the difference was not considered statistically significant — 9.3% of mothers of children with autism had diabetes during pregnancy compared with 6.4% of mothers of typically developing children. Kids of mothers with diabetes also scored lower on language and communication tests compared with other children. As for children with developmental delays, 11.6% of their mothers had diabetes while pregnant.

Researchers also investigated the effective of hypertension, or high blood pressure, on developmental outcomes in children, finding that prevalence was low but still higher in moms of children with autism — 3.7% versus 3.5% of moms of children with developmental delays and 1.3% of moms of typical children.

“The prenatal period is a crucial time for the etiology of autism spectrum disorders,” says Alycia Halladay, director of research for environmental sciences for advocacy group Autism Speaks, which was not involved in the study. “This adds to the body of science that there are risk factors for autism spectrum disorders that are associated with maternal health during pregnancy.”

The common thread tying together the three conditions — diabetes, obesity and hypertension — is chronic inflammation and insulin resistance, says Paula Krakowiak, lead author of the study and a Ph.D. candidate in epidemiology at UC Davis.

Krakowiak first wondered about the possible connection between autism and inflammation several years ago. Several studies had reported irregularities in the immune systems of children with autism, including findings of elevated levels of certain immune markers that indicated greater inflammation in autistic children compared with typically developing children.

She decided to look at mothers who had some level of persistent inflammation and settled upon those with diabetes, obesity and hypertension, all of which are also characterized by insulin resistance. With diabetes, bodily tissues can’t absorb enough glucose, which results in high blood sugar and causes inflammation of the blood vessels. Insulin, a hormone produced by the pancreas, isn’t released as it should be to remove the sugar from a diabetic person’s bloodstream after mealtime. In regard to obesity, having excess fat tissue creates an inflammatory, insulin-resistant environment. And hypertension, like diabetes, is marked by inflammation of the interior of blood vessels.

When a woman is pregnant, her body — in order to increase fat deposits biologically necessary during and after pregnancy — naturally becomes more insulin-resistant. “Women who are already borderline insulin-resistant before pregnancy may be more likely to develop diabetes during pregnancy because the natural processes of pregnancy make you less sensitive to insulin as the pregnancy progresses,” says Krakowiak.

Krakowiak was hesitant to proclaim that her study proves that obesity actually causes autism, but she did acknowledge that her findings raise a public health flag and warrant further research. Other studies could focus more on immunological and environmental factors potentially impacting the rise in autism. “It’s possible this is just a correlation and there is some upstream environmental factor that’s causing a rise in both metabolic conditions and autism independently,” she says. “The question of what causes autism is still open.”

Regardless of the observational findings, Halladay said the study’s conclusions reinforce the message that all pregnant women should have access to prenatal care, eat well and exercise to protect the health of their developing baby. “We know there is not one thing that causes autism,” she says. “This is one of the associated risk factors of autism, and it’s one that women can do something about — see a doctor, eat healthy and check themselves for gestational diabetes.”

Diet is particularly critical, believes Krakowiak. “It’s just another reason to take good care of yourself during pregnancy, not just for yourself but for the health of your baby,” says Krakowiak, who is pregnant.

She passed her initial gestational diabetes screen and continues to eat plenty of fruits and vegetables and steer clear of sugar. “Every once in a while I will have dessert,” says Krakowiak, who’s in her second trimester. “I’m lucky I don’t have a sweet tooth.”

Bonnie Rochman is a reporter at TIME. Find her on Twitter at @brochman.

Read more: http://healthland.time.com/2012/04/09/moms-obesity-diabetes-linked-with-autism-and-developmental-delays/?xid=newsletter-healthland#ixzz1rkQtn7Nb

Over the years many parents have reached out to me for emotional support after their child was diagnosed with autism. I particularly remember getting Jenny McCarthy’s phone call shortly after her son’s diagnosis. Like most moms and dads, she needed to connect with somebody who knew first hand the swift gut-kick of this difficult diagnosis, somebody who had been in the trenches for 7 years already.

We cried. We cussed. We even managed to laugh. We spoke for eight hours. She was naturally frustrated with the lack of answers about autism. I was there for her as I’d be for any parent, and I told her she was blessed to get such an early diagnosis. Her passion was palpable and I could tell she was going to grab autism by the horns, making it her mission and focus. I knew she’d help spread autism awareness like nobody else could and the media would pay attention. Since that phone call, she has created a very successful platform with her powerful opinions, blogs and books on vaccine safety, diet and recovering her son among other things. It has been a courageous, controversial and fearless ride. Miss Jenny is not scared to get in the ring with the big boys!

Though I share many of same concerns, I feel compelled to shed light on the fact that families affected by autism are struggling on multiple levels. We need a shift of focus to share the spotlight with other often overshadowed issues that profoundly impact families daily.

To that end, below I highlight 8 things about autism the media is not covering enough. They are not hot-button, provocative or headline-grabbing, but with 1 in 110 children affected by autism (and rising), these issues desperately need more attention:

1. Autism Is Unaffordable

I’d love to see more media focus on how ridiculously expensive it is to treat a child with autism. You can counsel folks all day long to get early intervention, but who in the world can pay for it? Therapies can average over $100-$150 an hour – many require up to 14 or more hours a week. With insurance companies still not covering the vast amount of therapies needed, too many families are forced to pay out of pocket for much of these expenses. A 2006 Harvard study puts the average cost of services for an individual with autism is $3.2 million over his/her lifetime! A total of $35 billion a year is spent on services for individuals with autism in the U.S. The numbers have climbed since then…

Bottom line is treatment is completely and ridiculously unaffordable and can financially bring a family to its knees… even in good times.

Families live on pins and needles with hopes that they’re doing the right thing. But the fact is for too many, the things we want to do are simply out of reach financially. I can think of no worse scenario than not being able to afford to help your child.

2. Parental Guilt

So if you are blessed enough to afford it, in my experience it seems that some kids can improve tremendously with a mix of intensive behavioral, biomedical and other treatments. But the fact is so many likely will never be “recovered” and nothing, I mean nothing, makes a parent feel more guilty than thinking you could’ve “fixed” your kid but… well you didn’t or couldn’t afford to. If you have a child who is non-verbal and severely impacted by autism, for example, and all you want to hear is him speak or just use the word “no” appropriately, it can be maddening to hear that someone else did x, y or z and now their kid is no longer on the spectrum at all. So many parents have shared with me how badly they feel about this. And although I personally have broken my butt for my son and though he has overcome many challenges we were told he would not, he still has autism. What could I have done better? Oh the guilt! Don’t get me wrong, I am always elated for any child’s success in this journey, but it can be very hard to swallow at times-making you feel like a failure. Just one mom’s opinion, keeping it real…

Alas, accepting my son’s progress or lack thereof is the key to moving forward with my head up.

3. Puberty Plus Autism Can Be a Volatile Mix

Our son is almost 13 and has entered puberty. Oftentimes kids on the spectrum can start puberty prematurely, and it can be an extremely jarring experience.

A dear friend of mine and autism “Superdaddy” explains puberty’s effect on autism like this: “[Puberty is] an ‘oy vey’ for a normal child but it can send hormones racing in a child with autism that they don’t know how to deal with.”

The hormonal surge can cause violent and unpredictable behavior. Stress and depression can develop accompanied by social ostracism.

Our son has suddenly regressed recently after making so much progress, bringing us a new set of challenges we hadn’t anticipated. We always always remain extremely hopeful and have been blessed beyond our wildest dreams with what he has been able to overcome to this point. But puberty has been a challenge more parents need to be prepared for. It can be a completely different dynamic at this age. Let’s get that out there, please.

4. Minority Children are Diagnosed with Autism Years Later Than Other Children

There are a lot of mysteries about autism. But one thing we know, according to a study covered by CNN:

if a child is diagnosed with autism as early as 18 months of age, offering the toddler age-appropriate, effective therapy can lead to raised IQ levels and improved language skills and behavior.
That’s why the fact that African American, Asian and Hispanic children tend to be diagnosed much later than other children (sometimes 2-5 years later) is extremely concerning and needs more attention. One reason these children are diagnosed later is that there are more barriers for socio-economically challenged families to access information. Certain developmental milestones are ignored, unknown or overlooked. Another part of the reason is that there are some cultural and social stigmas about mental health and a fear of talking openly or seeking help for them. So the hope often is that the child will just grow out of it. We just need way more infiltration of autism information and support in minority communities, which will hopefully result in earlier diagnosis. I’ve visited black churches with this message letting them know they can be extremely helpful in this effort. We can’t allow the window for “age-appropriate, effective therapy” to close on these kids.

5. Autism Can Be Tough on A Marriage

Autism is not a divorce mandate. Often it can bond a family tighter. But too often the financial and/or emotional toll autism can take leaves some couples feeling distanced from each other. This was the case with our marriage. My husband and I narrowly survived statistic status. But over the last 10 years I have marveled at his ability to evolve as a father and husband during this bumpy ride that he chronicled in his new book Not My Boy! A Father, A Son, and One Family’s Journey with Autism (Hyperion).

I want to shamelessly plug my former NFL QB’s evolved, honest account of his pain of dealing with this diagnosis. His personal revelation was that he had to adjust his expectations of his son. Our hope is that Not My Boy! will help so many dads (and moms) confront these challenges without feeling so alone. Rodney has taught me that men process things so differently. I could have been more patient and empathetic with respect to that… a book like this might have offered me that insight earlier on.

Couples digging deep to find the strength and resources to take on this fight together may be rewarded by actually connecting more deeply through this journey instead of being fractured by it.
6. Autism’s Effect on Siblings

We don’t see too much coverage about what the siblings of autism endure.

Ruined play dates, family outings cut short due to a brother’s or sister’s public meltdown, feelings of neglect, life planned exclusively around the affected child, social stigma… the list goes on.

It can be devastating for a typical child to have to grow up in such an environment. Sibs are often overlooked and really need a bit of attention; parents need tips to help the siblings cope.

I’m so hopeful this will change a bit with the release of My Brother Charlie, a new children’s book co-written by my daughter and me. (We’ve been a busy family!) Told from a sister’s perspective, in My Brother Charlie Callie acknowledges that while it hasn’t always been easy for her to be Charlie’s twin, she advocates lovingly for her brother, letting people know about all the cool things he can do well. I pray this book will go a long way towards fostering autism acceptance among children and mainstream schools. We found it hard to believe that there wasn’t already such a book in children’s libraries, considering the rising number of children on the spectrum. We are thrilled that Scholastic stepped up enthusiastically to embrace this important effort.

7. Adults Living with Autism

The face of autism is changing. Our children grow up. Understandably, every parent stresses about what will become of their child with autism in adulthood. It’s my own personal recurring nightmare. We ask ourselves: How will he make it in this cruel world without me? Will he live on his own? Will he ever get married or have meaningful relationships? Who will protect his heart? Our fears in this area can consume us.

Here are a few sobering facts:

•More than 80% of adults with autism between 18 and 30 still live at home (Easter Seals)

•There is an 81% unemployment rate among adults with autism (CARD)

•78% of families are unfamiliar with agencies that could help them (CARD)

•At least 500,000 children with autism will become adults during the next decade, and they will need homes, jobs, friends and a future

The good news is many adults living with this disorder live very fulfilling lives, but too many face a variety of difficulties including anxiety, depression, anger and social isolation.

We must create meaningful respectful futures for adults with autism that include homes, jobs, recreation, friends and supportive communities. They are valuable citizens!

How glorious would it be to get more media attention on this particular issue.

And bravo to Fox Searchlight Pictures for their beautiful and enlightening film Adam, which gave great insight into what it is like for a young man with Asperger’s syndrome to live and thrive on his own.

8. Autism Advocates Who Actually Have Autism:

What a concept! Rarely do you hear any stories in the media about people actually affected by autism ever weighing in on the issues surrounding it. Because people on the spectrum may seem disengaged, they hear you talking about them and can develop frustration at not being able to respond to issues that affect them. We all need to remember that…

I have had some enlightening and profound conversations with folks on the spectrum who have made it very clear that they feel completely excluded from any national autism conversation. I’ve had some ask me to be very mindful about my language when speaking about autism. For example, several have said to me they cringe at the word “cure.” Many have expressed that they feel this was their destiny, that they were born this way so stop trying to “cure me.” Whatever our views or personal agendas, we have to respect that.

Others have been frustrated by the polarizing issues disproportionately covered in the media and would prefer for us neuro-typicals to focus that energy towards trying to understand their world, how they see things. “Come into my world!” one 25 year old young man with Asperger’s told me passionately.

My friend, 14-year-old Carly Fleischmann, has autism, and has taught me more about it through her expressive writings than I’ve learned in any book! You go, Carly!

I am also so grateful to HBO for recently airing the sensational Temple Grandin, finally giving us an image in the media of an adult with autism advocating beautifully and articulately for others like herself.

Bottom line: Their opinions should be heard, valued and included.
So here’s to breaking off 8 rays of the media spotlight towards some other important autism issues. Families affected by autism deserve more than just fiery headlines; we deserve a 360 degree, multi-faceted conversation. Spread the word!

Although the severity of autism can vary widely, many children with the neurological disorder — which typically appears in the first three years of life — have problems speaking, interacting with others, sharing affection, and learning. Thanks to the tireless efforts of parents and advocates, public awareness of autism has grown tremendously since it was first identified in 1943, but it is gaining even more attention today than ever before. Congress has held hearings on the condition. Public-health agencies are spending millions to study it. Researchers at countless universities are racing to find the causes and best treatments.

“There are many unanswered questions,” says Alice Kau, Ph.D., an autism expert at the National Institutes of Health, which funded more than $74 million in autism research in 2002, as compared with only $22 million in 1997. Still, researchers are beginning to make progress in unraveling this baffling disorder, and the number of resources available for families is increasing. Here, six facts about autism that every parent should know.

1. RATES ARE ON THE RISE
Autism is ten times more common today than it was in the 1980s, according to the Centers for Disease Control and Prevention. More than three in 1,000 children in this country have autism to some degree. In California, the number of kids with autism in the state’s social-services program nearly doubled between 1998 and 2002, surpassing cases of childhood cancer, juvenile diabetes, and Down syndrome. Nationwide, autism strikes three to four times more boys than girls; the rates are about the same for kids of all races.

Although there seems to be an autism epidemic, most experts attribute the increasing prevalence to improved diagnosis and reporting. The definition of autism has been expanded in the past decade to include a wider spectrum of problems with communication and social interaction. “Ten years ago, many children with mild autism were simply not diagnosed,” says Adrian Sandler, M.D., a developmental-behavioral pediatrician at Mission Children’s Hospital, in Asheville, North Carolina, and chair of the American Academy of Pediatrics’ committee on children with disabilities. Plus, there are more state and federal programs for autistic kids, giving doctors an incentive to diagnose and refer them. However, there may be additional, unknown reasons for the spike in autism rates, and researchers are investigating everything from environmental toxins to viruses to food allergies.

2. KIDS ARE GETTING DIAGNOSED SOONER
There’s no laboratory or medical test for detecting autism, so doctors must rely on behavioral signs. In the past, many were reluctant to label a child as autistic until symptoms became obvious. “The average age for diagnosis had been about 3 1/2, with many children diagnosed much later,” says Amy Wetherby, Ph.D., director of the Center for Autism and Related Disabilities at Florida State University, in Tallahassee. But that’s changing.
One reason is that pediatricians are becoming more aware of autism. At the same time, autism specialists are better at identifying early telltale signs such as a lack of babbling or pointing. “Most children with autism will show some signs of developmental disruption by their first birthday,” says Rebecca Landa, Ph.D., an autism researcher at Baltimore’s Kennedy Krieger Institute.

And while no one is yet diagnosing autism in children that young, doctors can now make a reliable assessment by 24 months — when a child’s brain is still rapidly developing. “If we can intervene while a child’s brain is very immature, it will be much easier to help change her behavior,” Dr. Wetherby says.

3. AUTISM IS A GENETIC DISORDER
Although autism was once believed to be the result of improper parenting, researchers now believe that genes — not psychological factors — are to blame. If a couple has one autistic child, there is a 5 to 10 percent chance that siblings will have some sort of autistic disorder. With identical twins, the likelihood is 60 percent. Even though profoundly autistic people rarely have children, researchers often find that a relative has mild autistic symptoms or a high-functioning autistic-spectrum disorder known as Asperger’s syndrome.

Experts believe that autism is the result of multiple genes — anywhere from three to 20 — interacting with each other. This may explain why the symptoms and severity of the disorder vary greatly. These genes may cause a baby’s brain to develop abnormally in utero or make him more susceptible to unknown triggers. “There is probably a combination of genetic and environmental influences,” says Catherine Lord, Ph.D., director of the Center for Autism and Communication Disorders at the University of Michigan, in Ann Arbor. Although the genes linked to autism have not yet been pinpointed, intense research is under way.

4. THERE IS NO KNOWN SCIENTIFIC LINK BETWEEN VACCINES AND AUTISM
There’s been widespread controversy about a possible connection between vaccines and the soaring autism rates. Some parents of children whose autistic symptoms first appeared shortly after their measles-mumps-rubella (MMR) immunization are convinced the shot was the cause, but repeated studies have failed to find scientific evidence. Although one small, heavily publicized British study published in 1998 suggested a link, 10 of the 13 authors publicly retracted the findings in March 2004, saying they were unreliable. The study, lead by Dr. Andrew Wakefield, only studied a small sample of 12 kids, eight of whom were diagnosed with autism. By early 2010, the same British journal, The Lancet, that published his findings retracted his study and in January 2011, the British Medical Journal publicly denounced Dr. Wakefield’s research as “fraudulent.” The British Medical Journal announced that Dr. Wakefield had “falsified data” and tampered with his research results to give the MMR vaccine bad publicity. At the time of his study, Dr. Wakefield had been involved in a lawsuit against the manufacturers of the MMR vaccine and would have gained money if he’d won, making his research an obvious conflict of interest.

Because the MMR vaccine is routinely given at 12 to 15 months — when the first symptoms of autism often become noticeable — the apparent association is a coincidence, says Parents adviser Neal Halsey, M.D., director of the Institute for Vaccine Safety at Johns Hopkins University, in Baltimore. Up to 40 percent of children with autism typically experience regression at 12 to 18 months; they start developing normally but then suddenly lose communication and social skills.

The possibility that mercury poisoning might cause autism is also a concern. Since the 1930s, a preservative called thimerosal, which contains small amounts of mercury, had been used in some childhood vaccines (not MMR). Although mercury is known to be harmful to the brains of infants and young children, most vaccine experts say the amounts used in the preservative were too tiny to cause neurological damage. Nevertheless, manufacturers voluntarily began removing thimerosal in 1999, and by the end of 2001, none of the routine vaccines given in early childhood contained the preservative. The preservative is now used only in flu shots and some vaccines given to adults and adolescents.

5. LARGE HEAD SIZE IS A RED FLAG
Recent findings published in the Journal of the American Medical Association suggest that the brains of children with autism develop differently from an early age. Researchers discovered that most infants who were later diagnosed with autism had small head circumferences at birth but had heads — and brains — much larger than normal by 6 to 14 months. “Some of them went all the way up to the 90th percentile in just a few months,” says study coauthor Natacha Akshoomoff, Ph.D., an assistant professor of psychiatry at the University of California, San Diego. Those who ended up with the most severe form of autism were found to have the most dramatic acceleration of brain growth during infancy.

Pediatricians don’t always measure head circumference at well-baby visits, so it’s wise to request it. However, don’t panic if your baby’s head size is above the norm. Some babies just have big heads. “Rapid head growth is not a way to diagnose autism,” Dr. Akshoomoff points out, “but it means that a child should be watched closely to be sure that she meets speech and behavioral milestones.”

6. EARLY TREATMENT IS CRUCIAL
There is no known cure for autism, but intensive therapy helps a child learn a wide range of skills — from making eye contact to hugging to having a conversation. And the sooner a child begins, the better. A panel of experts convened by the National Academy of Sciences in 2001 recommended that children should have 25 hours of therapy per week as soon as autism is suspected. Because children with autism have very different behaviors and abilities, the most effective approach takes into account a child’s unique challenges and encourages healthy development through play, rather than just trying to change specific symptoms. “Intervention can take many forms, from going to a regular preschool to a parent’s working with her child over the course of a normal day to direct therapies from well-trained teachers and professionals — all depending on the child,” Dr. Lord says.

Thanks to early intervention, some children — like Nancy Wiseman’s daughter, Sarah — make remarkable progress. “At the very least, we’re able to lessen the severity of symptoms,” says Dr. Lord, who chaired the expert panel. “The latest studies show that almost 80 percent of kids with autism now have some speech by age 9, whereas only 50 percent of these kids were talking 20 years ago.” And though past research suggests that most autistic children have below-average cognitive abilities, a recent study found that early treatment raised children’s IQ scores by about 20 points, to almost normal levels. Those who started therapy as toddlers were also more likely to attend regular kindergarten.

One of the biggest remaining challenges is the shortage of trained therapists and spots in special-education programs and schools for children with autism. To address this problem, the federal government recently announced a ten-year plan to provide adequate services.

While there’s still much about autism that remains a mystery, research scientists are making new discoveries every day. In fact, they say, it may be possible to cure autism one day — perhaps through gene therapy even before a child is born. But for now, early diagnosis and therapy offer the best hope. “There’s no doubt that today’s generation of autistic kids will be better off than previous generations, because they’re getting help sooner,” Dr. Wetherby says.

Eager to get his hands on a fruit snack Monday afternoon, 9-year-old Ssekabembe Miner had a difficult decision to make.

“Which one is green?” asked speech and language pathologist Jaymie Elkins while holding an iPad with a split screen showing two colored circles, one green and one orange.

Miner, diagnosed with a severe form of autism, knew he had to choose wisely to get his reward. With his therapists looking on, he straightened his finger and reached for the screen.

“Good job,” said Elkins, who works with children like Miner at Iowa City’s Children’s Center for Therapy.

Thanks to iPads and digital tablets spreading touch-screen technology, parents, teachers and therapists of children with autism and other mental disabilities can turn something as simple as snack time into a teaching moment.

“The social skill applications are unbelievable,” Monica Ryan-Rausch said of tablets’ teaching capabilities. She’s holistic program manager for the autism program at Four Oaks in Cedar Rapids.

Through the use of uniquely designed software on digital tablets, autistic children who typically avoid social interaction are talking with their peers, expressing emotions, asking appropriate questions and — in some of the more severe cases — communicating effectively for the first time.

“For these kids, it’s something they’re most comfortable with — technology,” Ryan-Rausch said. “They are getting to have social interaction in a non-threatening manner. It’s not a direct conversation, so it’s much more comfortable for them.”

Research is abundant, showing the benefits of touch-screen tablet technology for children with autism spectrum disorders and other mental and communicative disabilities. Studies from advocacy organizations, research centers and universities — including the University of Iowa — have found the technology can improve social interactions for the children and enable adults to learn more about them.

A diagnosis of autism is not the end of love and hope. But media stories thrive on the most overwhelming and horrifying circumstances. Here are just a few of the myths perpetuated by TV, magazines and movies — myths that, at least in my opinion, deserve to be blown away!

1. Autistic People Are All Alike
Myth: If I’ve met an autistic person (or seen the movie Rain Man), I have a good idea of what all autistic people are like.
Fact: Autistic people are as different from one another as they could be. The only elements that ALL autistic people seem to have in common are unusual difficulty with social communication.

2. Autistic People Don’t Have Feelings
Myth: Autistic people cannot feel or express love or empathy.
Fact: Many — in fact, most — autistic people are extremely capable of feeling and expressing love, though sometimes in idiosyncratic ways! What’s more, many autistic people are far more empathetic than the average person, though they may express their empathy in unusual ways.

3. Autistic People Don’t Build Relationships
Myth: Autistic people cannot build solid relationships with others.
Fact: While it’s unlikely that an autistic child will be a cheerleader, it is very likely that they will have solid relationships with, at the very least, their closest family members. And many autistic people do build strong friendships through shared passionate interests. There are also plenty of autistic people who marry and have satisfying romantic relationships.

4. Autistic People Are a Danger to Society
Myth: Autistic people are dangerous.
Fact: Recent news reports of an individual with Asperger Syndrome committing violent acts have led to fears about violence and autism. While there are many autistic individuals who exhibit violent behaviors, those behaviors are almost always caused by frustration, physical and/or sensory overload, and similar issues. It’s very rare for an autistic person to act violently out of malice.

5. All Autistic People Are Savants
Myth: Autistic people have amazing “savant” abilities, such as extraordinary math skills or musical skills.
Fact: It is true that a relatively few autistic people are “savants.” These individuals have what are called “splinter skills” which relate only to one or two areas of extraordinary ability. By far the majority of autistic people, though, have ordinary or even less-than-ordinary skill sets.

6. Autistic People Have No Language Skills
Myth: Most autistic people are non-verbal or close to non-verbal.
Fact: Individuals with a classic autism diagnosis are sometimes non-verbal or nearly non-verbal. But the autism spectrum also includes extremely verbal individuals with very high reading skills. Diagnoses at the higher end of the spectrum are increasing much faster than diagnoses at the lower end of the spectrum.

7. Autistic People Can’t Do Much of Anything
Myth: I shouldn’t expect much of an autistic person.
Fact: This is one myth that, in my opinion, truly injures our children. Autistic individuals can achieve great things — but only if they’re supported by people who believe in their potential. Autistic people are often the creative innovators in our midst. They see the world through a different lens — and when their perspective is respected, they can change the world.

• Most people with Asperger’s Syndrome are of average or above average intelligence.
• They have excellent thinking skills where things are concerned but are extremely poor at interpreting human relationships.
• Intense preoccupations often centre on certain toys or areas of interest. Common obsessions are dinosaurs and forms of transport and how they work.
• They will often seek out other people to talk to about their interests. The conversation is usually one-sided – more like a lecture where they talk about their knowledge and aren’t interested in feedback.
• Older children may enjoy a club that is focused on their interest – for example, coin or stamp collecting.
• Eye contact is not understood or made use of.
• The child may appear cold and uncaring but it is not deliberate. He does not think about others and cannot understand the social graces that keep society functioning.
• It is possible to teach social skills but it is a long slow process and often requires parental intervention to repair social damage when they act inappropriately.
• Short stories can be useful in teaching social skills. Use one page visual aids that teach about listening to others and keeping quiet and still while they talk.
• Children with Asperger’s Syndrome prefer routine and structure and can become irritable and distressed if the unexpected happens.
• Gross and fine motor skills are often underdeveloped, causing problems in sports and balance.
• Asperger’s Syndrome is often detected when a child starts preschool. He will generally interact better with his teacher than his peers and may display silly, loud, aggressive or socially withdrawn behaviour.
• Things are interpreted very literally, meaning that sarcasm, playful teasing and figures of speech are not understood.
• Rules are very important and a child may become angry if a game is not played fairly or his peers break school rules.
• On a positive note, this aversion to rule-breaking means the Asperger’s Syndrome child is less likely to experiment with smoking, drinking, drugs, and sex as he matures.
• Many children are perfectionists and struggle if they fail to produce perfect schoolwork. Encourage them to move on, and create distractions if necessary to get them to continue working.
• They find it hard to generalize. If taught that they shouldn’t hit a child at school, they do not automatically make the connection that they shouldn’t hit a child in the mall.
• Children with Asperger’s Syndrome express their feelings in unpredictable ways. Sometimes they may seem emotionless and other times they may display extreme emotion that is not appropriate to the situation.
• Interrupting conversations is a common problem as the child does not understand the social signals that allow conversation to move from one to another.
• A child can be helped if parents consistently work with him and highlight his strengths and work consistently on his weaknesses

There is hope for children who have Asperger’s Syndrome and with training and support from their family and health professionals, they can live meaningful, productive lives.

Read more at Suite101: 20 Facts about Asperger’s Syndrome in Children: Understanding the Signs that Accompany Asperger’s Syndrome | Suite101.com http://debbieroome.suite101.com/20-facts-about-aspergers-syndrome-in-children-a105421#ixzz1mZYpPxOY