For some kids, "OK" is hard work

Two blog posts today hit home for me, and made me stop and think about kids on the autism spectrum and how adults sometimes perceive their quirks.

At Woulda Coulda Shoulda, Mir describes how her son reacts after a wonderful but non-typical weekend. "Maybe you don’t see it, but he’s working so hard to stay 'okay' while his slightly miswired brain is trying to tell him that this is HARD and WEIRD and DIFFERENT," Mir writes. "It’s not that he doesn’t love it, on many levels. It’s not that he didn’t have a blast, because he totally did. It’s just that it’s hard work for him."

At Squidalicious, Shannon details what goes on behind the scenes when you see her out and about with her son, and points out how many of his sucesses are hard to see. "My behavior probably appeared very odd and controlling -- a helicopter mom hand-feeding her chubby son -- yep, that family's got some food issues," she writes. "But there was actually a lot of work, progress, and practicing going on, for those who knew what to look for."

The bottom line? Shannon sums it up nicely: "Perhaps instead of thinking, 'Why is that kid behaving so strangely,' you could ask yourself, 'I wonder just how hard that kid is working.'"


Click through to read Mir's and Shannon's posts.

A matter of magnetisim? Not really.

Thanks to Squidalicious for the link, but after reading her reaction to my interview with Dr. Andrew Wakefield (and that of a commenter on Scienceblogs.com, who called my post "gushy") I feel like a bit of an explaination is in order.

Dr. Wakefield has been taken to task by plenty of bloggers and media outlets for his sketchy research practices, his opposition to the MMR vaccine, and his contribution to the anti-vaccine movement -- and rightly so. In interviewing him last week -- on the same day that he was interviewed live on the Today show by Matt Lauer, who played several minutes of background video before cramming a few predictable questions about his research into the last minute or so of the segment -- to me, the new information was the fact that Wakefield had lost his license to practice medicine and the fact that he was committed to continuing his research, albeit with animals instead of people. So that's what I wrote about.

Yes, I wrote that "our conversation about new areas of autism research was fascinating, and he had some interesting points to make about vaccines and autism in general." It was, and he did. But our conversation wasn't just about his research, and the points he made (most of which have been made before by many others -- I've written about it here) were surprising, given the general assumption -- mine included -- that he is completely anti-vaccine.

Is the man charistmatic? Of course he is. Is he defending himself? Obviously, yes. Did he deserve to lose his medical license? Given the many issues with his original research, I think so (though he told me he feels that it's an attempt to discredit him, I have to say that he did plenty to discredit himself). Is there more to the story than the questions everyone else has already asked? Always.

Wakefield: I will continue to study autism and vaccines

The British government stripped Dr. Andrew Wakefield of his license to practice medicine today, citing "serious professional misconduct" in research methods used in his 1998 study about the Measles-Mumps-Rubella vaccine and autism, the results of which led millions of parents to stop vaccinating their children. Dr. Wakefield calls the British ruling an effort to discredit his work, and said that he will continue with his research into vaccines and autism.

"My concern is for vaccine safety, for a safety-first vaccine policy," Dr. Wakefield told me in an interview today. "I have every intention of continuing to serve this population of children for as long as I can."

I expected to be up-in-arms while talking to this controversial scientist, whose research has come under attack for being impartial and unethical. Instead, our conversation about new areas of autism research was fascinating, and he had some interesting points to make about vaccines and autism in general.

According to the Associated Press, vaccination rates in the UK have never recovered after Wakefield's 1998 study linking the MMR vaccine to autism in children -- in spite of the fact that the study involved just 12 children, clearly stated that no causal connection between the two had been proven (though it did say that the possibility had been raised), and was officially retracted in February by the Lancet, the medical journal in which it was originally published. Some people have extrapolated the findings to include all vaccinations, not just the MMR.

Parenting a teenager with autism: An interview with author Claire LaZebnik

It's so much easier to think about playgrounds than the prom, and while showing your preschooler how to make and keep friends is tough, dealing with teens and dating is even more so.

Bookstores and the internet are overflowing with information about early intervention for kids on the autism spectrum, but there's precious little out there to guide parents who are navigating the teen years with a child who has autism. One wonderful resource is Growing Up on the Spectrum: A Guide to Life, Love, and Learning for Teens and Young Adults with Autism and Asperger's, written by Claire Scovell LaZebnik and Dr. Lynn Kern Koegel. (The duo also penned the 2005 book Overcoming Autism.)

A mother of four, the oldest of whom has autism, LaZebnik is a Newton, Massachusetts native who lives with her family in Los Angeles. In addition to the two books about autism that she's cowritten with Dr. Koegel, LaZebnik is the author of four novels, the latest of which is due out this September.

I interviewed LaZebnik for an In the Parenthood post that's live now on Boston.com (click here to read it), but of course there was so much more to the interview than what ended up in the article. Here's the full Q&A, a must-read for any parent with an autistic child of any age.

Autism Awareness: Frontline and "Moms against science"

Earlier this week, PBS broadcast its Frontline piece on "The Vaccine Wars," touching on the MMR vaccine-autism debate and the Thimerosal-autism debate, both of which are still ongoing in some communities in spite of the fact that the supposed links have been debunked. I watched the show online (you can do so here), and was disappointed by the way that the show pitted anecdotal evidence from parents against research and advice from medical professionals. As Dr. Jay Gordon put it in an open letter to one of Frontline's co-producers, the program created "a pseudo-documentary with a preconceived set of conclusions: 'Irresponsible moms against science' was an easy takeaway from the show." I agree completely, and we're discussing the show -- and what it means for parents who avoid vaccinating or who are proponents of an alternative vaccine schedule -- at my new parenting column for the Boston Globe, In the Parenthood.

An assistant professor of pediatrics at UCLA Medical School who has reservations about vaccinations, Dr. Gordon's multi-hourlong interview with Frontline ended up on the cutting room floor, he says, as did an interview with Dr. Robert W. Sears, author of The Vaccine Book: Making the Right Decision for Your Child, who advocates an alternative vaccination schedule. Evidence in favor of vaccination was provided by researchers including Dr. Paul Offit, who has earned millions of dollars as the co-creator of the RotaTeq vaccine, is a paid spokesman for Merck, and has said that he thinks infants' immune systems could theoretically handle as many as 10,000 vaccinations at one time, or perhaps "closer to 100,000."

Autism Awareness: The seven -- yes, seven -- senses

Sensory Processing Disorder, or SPD, is not technically an autism spectrum disorder -- making it difficult to address on an IEP -- but many children with autism also have some symptoms of SPD, which is why I wrote about it under the "Autism Awareness" heading over at In the Parenthood this month.

One of the things we learn early on in school is that we all have five senses: taste, touch, smell, hearing, and sight. But as Hartley Steiner, author of This is Gabriel Making Sense of School,
points out on her blog, Hartley's Life with 3 Boys, there are actually seven. In addition to the five we learn about as kids (sight, sound, taste, touch, and smell) there are two more -- vestibular
and proprioceptive. And those are the ones that pose a particular problem for some kids who have SPD and are on the autism spectrum.

Autism Awareness: Asperger's goes mainstream

Even if your child is neurotypical, chances are he or she knows someone -- a classmate, a neighbor, a relative -- on the spectrum. With this in mind, PBS's hit children's show Arthur introduced a new friend to the intelligent aardvark's class earlier this month: A sweet, brown-haired bunny named Carl, who has Asperger's Syndrome.

"Imagine you've crash-landed on an alien planet," explains The Brain, another one of Arthur's friends. "It looks like Earth, but there are lots of differences."

As a parent with a child on the spectrum (our oldest son has Asperger's), I have to say that The Brain's description really rings true to me. And I love the way the simple explaination is given -- without judgement, without fear, without question that some people are just different.

In the spotlight at SafetyNetSource.com

I'm honored to be in the Caregiver Spotlight at SafetyNetSource.com today, where they're focusing on autism awareness and caregiving. Here's an excerpt:

What advice would you give to caregivers of children with autism?

Breathe. Remember that each child is different, and that it’s called a spectrum for a reason. What treatments, exercises, and coping methods work for one child may not work for yours, so find the tools that you need to help your own child, and don’t worry about whether you’re doing it “right” or not. If it works for you, and your child is doing well, it’s right.

I found it very helpful to try to see things through our boy’s eyes. Ellen Notbohm wrote a great essay a few years ago, called “10 Things Every Child with Autism Wishes You Knew”; I interviewed her last year as part of my month-long Autism Awareness series. (You can read the interview and her essay here.)

Who is one of your idols? Why?

This may sound silly, but when I was a child, “Mighty Mouse” was my idol. I loved the idea that the tiniest of creatures could be the one who saved the day.

I’m not sure I have an idol now, as much as I just have ideals.

Click here to read the rest of the interview.

Proximity, location, and autism diagnoses: Is there a connection?

April is Autism Awareness month, and if you've been in Boston lately, you've probably seen the posters hanging in T and commuter rail stations -- photos and stories of children with autism, and a question: "What does autism look like?"

To answer the May Institute's question, a person with autism can look like anyone.

Late last year, the Department of Health and Human Services reported that autism was more widespread that previously believed, with about 1 in 100 children on the autism spectrum. The oft-cited link between the MMR vaccine and autism has been officially dismissed, and studies seem to show that now, more than ever, no one knows what really causes or triggers the disorders.

Two new studies by researchers at Columbia University offer new ideas about what causes autism, at least in California, where autism cases handled by the state's department of developmental services increased 636 percent from 1987 to 2003, according to Science Daily. One study points to a cluster near West Hollywood, where children were four times more likely to have autism than babies born in other parts of the state. The other asks whether proximity to a child with autism increases the chances of other children being diagnoses with the disorders.

In the first study, published recently in the Health & Place journal, researchers analyzed data from 11,683 autism cases out of the 4.1 million babies born in California from 1993 to 2001. They identified a 20-kilometer by 50-kilometer "cluster" or area where the autism rate seemed highest, and also noted 38 other "secondary clusters" with high rates. All of the secondary clusters were located in the greater Los Angeles region.

"The identification of robust spatial clusters indicates that autism does not arise from a global treatment and indicates that important drivers of increased autism prevalence are located at the local level," the researchers wrote. While their study did not attempt to pinpoint a single cause for autism, it does suggest that localized environmental toxins could play a part, as well as certain social influences, including "increased awareness of autism, decreased stigma associated with the disorder, or increased number of local advocacy groups," according to Soumya Mazumdar, a postdoctoral research scholar at Columbia’s Institute for Social and Economic Research and Policy who authored the study.

The other study, also by researchers from the Institute for Social and Economic Research and Policy at Columbia University but published in The American Journal of Sociology, shows that children who live near a child who has been diagnosed with autism are more likely to receive an autism diagnosis themselves. How could proximity play a part?

"From shared toxicants, through the diffusion of a virus, as a by-product of neighborhood selection, or through the diffusion of information about autism through social networks," the researchers wrote, adding that "meeting children with autism and having discussions with parents of children with autism could lead parents (of children not diagnosed with autism) to observe behavioral symptoms consistent with autism, to learn how to effectively identify and reach a physician, and to learn how to access and subsequently navigate services and service agencies."

The Columbia University team studied data from more than 300,000 children born in California between 1997 and 2003, and found that children who live within 250 meters of a child with autism have a 42 percent higher chance of being diagnosed with an autism spectrum disorder with the next 12 months. Children who live 250 to 500 meters away have a 22 percent higher chance of being diagnosed, and the greater the distance the less the likelihood of a diagnosis. The "social effect" was more prevalent in cases of mild (or "high functioning") autism diagnoses.

One of our children is on the spectrum (he has Asperger's Syndrome), and I absolutely agree that exposure to a child with autism builds awareness -- perhaps even overawareness -- of the signs of spectrum disorders in other children. It's easy to see how increased awareness could lead to an increase in diagnoses; a generation ago, a child with mild (or "high-functioning" autism would simply have been labeled "difficult" or "quirky," but now we have a better idea of what to look for (and how to help). Also: The autism spectrum itself has grown to include several things, including the all-encompassing PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) that would have been dismissed just a decade or so ago.

Lancet officially retracts study linking autism to MMR vaccine

There's been news on the autism front, and I'm over at Boston.com's Child Caring blog with the latest:

On Tuesday, editors at The Lancet officially retracted the British medical journal's 12-year-old study that they say incorrectly linked the combination Measles-Mumps-Rubella (MMR) vaccine to autism.

The retraction of the 1998 study comes less than a week after the General Medical Council of the United Kingdom chastised the Dr. Andrew Wakefield and his co-authors for acting "dishonestly and irresponsibly" in doing his research for the study, which claimed that eight out of 12 children who received the MMR vaccine began showing symptoms of autism within days of getting the shot.

New study links Autism and Schizophrenia

As the US Centers for Disease Control and Prevention came out with new data earlier this month, verifying that autism and autism spectrum disorders are much more prevalent among children than previously thought, researchers at Simon Fraser University in Vancouver have found that autism and schizophrenia may be genetic opposites, pointing to the possibility of new treatments for autism spectrum disorders.

According to evolutionary biologist Bernard Crespi and his co-authors, Philip Stead and Michael Elliot, autism and schizophrenia are each caused by anomalies in the same places in the human genome. People without either disorder usually have two copies of these genes; people with autism were found to have a single copy, while those with schizophrenia had extra copies.

"Autism and schizophrenia have always been regarded as being quite similar, but our data pretty much says the opposite," Crespi told The Vancouver Sun.

Why the increase in autism rates? More awareness? Or more misdiagnoses?

A Department of Health and Human Services report released Monday says that the autism rate in the U.S. is higher than previously believed -- about 1 in 100 children have an Autism Spectrum Disorder (ASD), the report says, up from the previous estimate of 1 in 150.

The details are even more troubling: The report, which appeared in the American Academy of Pediatrics' journal, Pediatrics, shows that while the 1 in 91 children are on the autism spectrum, the rate for boys is a startling 1 in 58.

Why the sudden uptick, especially given that the rate was just raised to 1 in 150 earlier this year? Over at Boston.com's Child Caring blog, I'm asking my readers what they think.

"Increased awareness" is the easy answer. A generation ago, a child with autism would simply have been labeled "difficult" or "quirky," but we have a better idea now of what to look for (and how to help). Another possibility: The autism spectrum itself has grown to include things like Attention Deficit Disorder, Attention Deficit Hyperactivity Disorder, Asperger's Syndrome, and the all-encompassing PDD-NOS, or Pervasive Developmental Disorder Not Otherwise Specified. Whatever the reason, the results of the study, culled from the responses of more than 78,000 parents, can't be ignored.

(Back in April, I wrote a four-part series on autism as part of Autism Awareness month -- you can read them all here. )

No one really knows what causes autism. A recent article in Science Direct indicates that children living near toxic waste seem more likely to have autism. Though the link between Thimerosal and autism has not been scientifically and definitively proven, many people still support the theory, citing anecdotal evidence that the mercury-laced preservative triggers a toxic tipping point, damaging the immune system. Others believe that a toxic synergy is to blame; many of the studies disproving the Thimerosal/autism issue do not explore the effect of multiple vaccines administered simultaneously, and many of the "harmless" chemicals and additives in everyday food and consumer products become toxic when heated or combined. (Randall Fitzgerald's book, The Hundred-Year Lie: How Food and Medicine are Destroying Your Health, does a great job of explaining the concept.)

Children who were extremely premature are thought to be at higher risk for autism. In 2008, some studies showed a possible link between autism and certain metabolic diseases. And of course, there's the genetic link: “Autism is probably caused by many, many things, most of them genetic, and this is one of them,” mitochondrial expert Salvatore DiMauro of Columbia University and the author of a study of autistic individuals with mitochondrial disease, tells the Simons Foundation Autism Research Initiative.

In spite of not knowing the cause, and in spite of not having a cure, a device has hit the market that claims to offer parents a way to detect autism in their child early on. The LENA Language and Autism Screen is raising red flags in the medical community. The device analyzes speech patterns in 2- to 4-year-olds, but not all children with speech problems are autistic. And, as Dr. Susan Anderson, director of the Autism Clinic at the University of Virginia Children's Hospital, told ABC, autism "is also a disorder of non-verbal communication, a disorder of social development (including play skills) and interactional skills, and a disorder which includes atypical behaviors. Any means of screening for autism needs to include all of these measures."

Our 11-year-old son is on the spectrum and I'll admit that, after his diagnosis with Asperger's Syndrome more than five years ago, there was a point where I felt like I was seeing signs of autistic behavior in nearly everyone I met. According to the study in Pediatrics, "Nearly 40 percent of those ever diagnosed with ASD did not currently have the condition." Does that mean that Autism Spectrum Disorders fade away with time? Or that maybe more kids are being misdiagnosed with ASD in an attempt to explain their not-quite-perfect behavior?

Jambalaya: A super-easy, gluten-free, economical, one-pot wonder

I love to cook. When I was in college, after a stressful day of juggling jobs and school I'd come home and cook, the same way other kids would go out and drink. My roommates used to say they could tell what type of day I'd had just by looking at what was on the stove at 1 a.m. (which is when I got home from work, and settled in to study).

I still love to cook, but now that I'm juggling jobs and a family I have less time -- not to mention way less energy -- than I had when I was in college. And right now, with the economy still tight and my budget even tighter, cooking at home isn't just therapy, it's necessary.

Back to school: Allergy-free lunchbox ideas

We had a great batch of back-to-school food and cooking ideas at Boston.com/Moms this week, but when it comes to kids who have food allergies, parents really have to think outside the lunchbox.

My family's back-to-school daze is complicated by the fact that three of our five kids can't eat gluten, and one of those three can't have any dairy, either. So, for them, nothing involving wheat in any way, shape, or form. No pasta salads (rice pasta can be nasty if it's not piping hot). No traditional sandwiches (gluten-free bread makes great toast, but crumbles into pasty bits after spending a few hours wrapped in plastic and stuck in a cubby or locker). It also rules out most pre-packaged lunchbox food, though there are some good gluten-free offerings out there.

Our youngest two kids have no known allergies or food intolerances, but their preschool is a nut-free zone -- which, compared to avoiding gluten and dairy, is easy. But, with preschoolers, it's also easy to get stuck in a baloney-sandwich or macaroni-and-cheese rut. ("What do you want in your lunchbox, Sweetie?" I asked my preschooler the other day. And, without even looking up from the picture she was coloring, she answered, "Something not boring.")

Here are five "main courses" that work for us. And by "work for us," I mean that I can whip them together easily, often in advance, and they'll actually eat it.

Chicken salad. I buy a family-size pack of bone-in chicken breasts on sale, roast them all at the same time, use some for dinner, and then chop up the leftovers with a little mayo or salad dressing to hold it all together. Try stirring in golden raisins or dried cranberries, adding crunch with chopped apples or celery, and changing the flavor profile with a bit of korma-style curry paste or some minced fresh herbs.

Fresh spring rolls. I'll send my big kids off with supermarket sushi in a pinch, but these fresh spring rolls are much more economical. Soak rice-paper wrappers in hot water for less than a minute, spread them out on a clean cutting board, and fill them with whatever strikes your fancy -- I use a combination of bean-thread noodles, thawed frozen shrimp or leftover pork, shredded lettuce, sliced radishes, and carrot shavings (made with a vegetable peeler). Here's a more detailed (but still easy!) recipe.

Roll ups. Corn torillas don't hold up well in a lunch box -- they delaminate and go all crumbly -- so I wrapped sticks of string cheese with slices of ham, turkey, and/or salami and called it good. (My non-dairy eating boy got salami spread with soy cream cheese and rolled up into little logs).

Crackers stackers. A pile of crackers (gluten-free ones for us), a heap of cheese squares, and a bunch of little rounds of ham or chunks of salami. Your kids might give you bonus points for putting it into a divided plastic container and pretending you bought it at the grocery store. Variation: Cut everything into large sticks and sub pretzel rods for the crackers; for some reason, food is more delicious if you can wave it around like a baton before consuming it, apparently.

BBQ steak non-sandwiches. Leftover London broil from dinner, cut into small, thin slices, and tossed with bottled BBQ sauce. Super easy. (Another favorite: False fajitas. Strips of leftover London broil, jumbled together with strips of bell pepper, with a corn tortilla on the side. If only we ate steak more often!)

Add a drink, something crunchy, something snacky, fruit, and a treat, et voila -- lunch is ready to go. (Keep your wallet in mind, and remember that brown-bagging it isn't just for the kids. Here are five more ideas for lunches adults can bring to work.)

What are you putting in kids' lunch boxes?

Treating autism: A primer on interventions

At Boston.com's Child Caring blog, I'm wrapping up my series for Autism Awareness Month with a primer on different treatments and therapies.

No one really knows what causes autism. A recent article in Science Direct indicates that children living near toxic waste seem more likely to have autism. Though the thimerosal/MMR vaccine theory has been debunked, many parents feel that the mercury-laced preservative is linked to their children's autism by triggering a toxic tipping point or otherwise damaging the immune system.

Last year, some studies showed a possible link between autism and certain metabolic dieases can be sensitive to vaccine toxicity, leading to some autism-like symptoms. And of course, there's the genetic link: “Autism is probably caused by many, many things, most of them genetic, and this is one of them,” mitochondrial expert Salvatore DiMauro of Columbia University and the author of a study of autistic individuals with mitochondrial disease, tells the Simons Foundation Autism Research Initiative.

With the autism rate on the rise, parents are turning to a number of different resources and interventions in the hope of finding a way to manage their children's autistic behaviors, improve their lives, and maybe find a way to help them heal. There's a great discussion about various methods going on in the comments section of the first post I wrote for Autism Awareness Month.
As with any medical condition, treating autism is not a do-it-yourself proposition, so please talk to your child's doctor(s) for more infomation and guidance. There are many options to look into when it comes to helping your child and alleviating some of the traditional symptoms.

Applied Behavior Analysis: ABA focuses on understanding how an individual's actions and skills are related to and affected by their environment, including social settings. The goal is to use various techniques, such as positive reinforcement, to encourage useful or desired behaviors while minizing harmful or negative behaviors. According to the Cambridge Center for Behavioral Studies, "ABA has been effective for teaching a vast range of skills to people with disabilities as well as to many other people in every setting in which people live, study and work."

There have been hundreds of published studies showing that certain ABA techniques can help individuals with autism learn specific skills, such as how to communicate, develop relationships, play, care for themselves, learn in school, succeed at work, and participate fully and productively in family and community activities, regardless of their age.

For more information on ABA, or on choosing a well-trained specialist, visit the New England Center for Children's resource page or the Cambridge Center for Behavioral Studies autism page.

The GFCF Diet and the SCD: Our 10-year-old son, who has Asperger's Syndrome, has been on a gluten-free and casein-free diet for about five years now (as recommended by several doctors, who still follow his treatment). It turns out he may have a genetic predisposition to gluten sensitivity, and instead of processing gluten properly, his gut leaks it out into his bloodstream, where it eventually acts like an opiate, plugging receptors in his brain and making him act loopy, spacy, and distant. Even now, five years later, it's easy to tell if he's ingested gluten -- the spaciness sets in within a day or two and he often ends up with stomach pain, which gradually disappears over the course of several weeks of being back on the diet.

Another option some doctors suggest is the Specific Carbohydrate Diet, or SCD. Based on chemistry, biology, and clinical studies, the diet allows or prohibits certain foods based on their molecular structure. Complex sugars and starches are not allowed, but simple ones -- think bananas, peas, and nuts -- are, because they do not need to be broken down by the digestive organs and, as such, do not tax the patient's already-damaged digestive system.

According to Pecanbread.com, a site devoted to the SCD: "The diet of early man is one of meat, fish, eggs, vegetables, nuts, low-sugar fruits, and certain oils. Starches, grains, pasta, legumes, and breads have only been consumed for a mere 10,000 years. Many people are not adapted to these types of foods yet."

There is a case to be made for a link between dietary intervention and a change in the severity of symptoms of autism. "If I were to put a gallon of milk in my car's gas tank, people would think that I was nuts," says nutritionist and autism advocate Mika Bradford, whose youngest son was diagnosed with autism about 10 years ago. "But when I suggested that what my son was eating affected his moods and behavior, I was belittled. We know that what we eat can affect our weight, blood-sugar levels, and how we feel. Dietary intake is directly related to medical conditions like Celiac disease and diabetes. Why would we diminish its role in other states of disease or behavioral diagnosis?"

Dr. Tim Buie, a pediatric gastroenterologist at Massachusetts General Hospital, has studied the connection between gastrointestinal issues and children with autism. On the Autism Network for Dietary Intervention website and at several conferences he's stated that he believes that many of the symptoms of autism are actually indicators that the child is in physical pain and unable to communicate about it. His study of more than 500 gastrointestinal endoscopies with biopsies on autistic children show that "more than half of these children had treatable gastrointestinal problems that ranged from moderate to severe including esophagitis, gastritis and enterocolitis along with the presence of lymphoid nodular hyperplasia."

Biomedical Invervention and Dietary Supplementation: There are a host of controversial interventions that hinge on removing toxins like heavy metals or supplementing the patient with things vitamins, minerals, or enzymes that the patient may not be producing on his own. The DAN (Defeat Autism Now) method combines biomedical, nutritional, and behavioral therapies to "recover" children with autism. The majority of mainstream doctors, however, do not recommend the DAN protocol, pointing out that "certain biomedical interventions, like chelation, are considered to be potentially dangerous," though the link between environmental factors, like toxins, and autism is becoming more accepted. Discover Magazine ran an article recently on biomedical intervention, in which Jill Neimark writes, "A vivid analogy is that the genes load the gun, but environment pulls the trigger," leading to an array of symptoms that need to be treated in the body as a whole, not just neurologically.

In Healing and Preventing Autism, Jenny McCarthy and Dr. Jerry Kartzinel detail several of the most popular supplements -- vitamin B12, digestive enzymes, fatty acids, Zinc, selenium, calcium, and probiotics, among many others -- in an easy-to-follow, conversational way (though the book seems more geared toward reassuring like-minded readers, rather than presenting the pros and cons of different interventions and theories).

I'm a mom and a journalist, not a doctor -- whatever methods people decide to explore in treating autism, it's imperative that treatment take place under the supervision of a qualified doctor or, in the case of ABA, a qualified, trained therapist. As with any medical condition, autism treatment is not a do-it-yourself project.

You can read the other posts in my series on Autism Awareness here

Inside the mind of a child with autism

Autism awareness: Resources that can help

Does my child have autism?

Autism Awareness: Resources and insight

With autism now more common than pediatric cancer, diabetes, and AIDS combined, if your child isn't on the autism spectrum, chances are good that he or she knows (or will eventually know) someone who is. The US Centers for Disease Control and Prevention estimates that 1 out of 150 kids have autism, an increase from previous estimates.

April is Autism Awareness Month, and at Boston.com's Child Caring blog and at The 36-Hour Day, I'm writing about ways you can better understand and help a child with autism.

Autism may be characterized by varying degrees of impaired social interaction or communication, but a little insight can go a long way toward making social situations easier. Start by shattering the Rainman myth, and take a moment to see what autism is like from the point of view of someone on the spectrum.

At Child Caring, I've reprinted (with permission) Ellen Notbohm's amazing essay, "Ten Things Every Child With Autism Wishes You Knew," adapted from her book of the same name. The mother of a child with autism and another with ADHD, Notbohm's books provide an enlightening glimpse into the minds of children on the spectrum, and have been an eye-opener for many people who are coping with a new ASD diagnosis or wondering how to interact with a child with autism. Go over and read it -- it provides eye-opening insight to what it's like to be a child on the spectrum.

At The 36-Hour Day, I've offered up a list of my top autism resources, including AutismWeb.com, Wrongplanet.net, The Autism Research Institute, Autism Network for Dietary Intervention, and AutismSpot.com.

Each week this month, I've devoted a Child Caring post to autism awareness. Stay tuned: This week, I'll tackle the controversal question of whether autism can really be cured.

Autism awareness: Understanding children on the spectrum

With autism now more common than pediatric cancer, diabetes, and AIDS combined, if your child isn't on the autism spectrum, chances are good that he or she knows (or will eventually know) someone who is. So, how do you help your child interact or socialize with someone on the spectrum?

Start by shattering the Rainman myth: Autism may be characterized by varying degrees of impaired social interaction or communication, but a little insight can go a long way toward making social situations easier. For example: "Birthday parties are an ideal way to introduce an autistic kid and his parents to your home," Paul Collins writes in Cookie magazine, where he offers tips on hosting an child with autism. "They're the stuff he finds logical: presents, cake, things to climb on. What's not to get?"

Ellen Notbohm is the author of Ten Things Every Child with Autism Wishes You Knew, Ten Things Your Student with Autism Wishes You Knew, and The Autism Trail Guide: Postcards from the Road Less Traveled, all ForeWord Book of the Year finalists. She is also co-author of the award-winning 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, a columnist for Autism Asperger’s Digest and Children’s Voice, and a contributor to numerous publications and websites around the world.

The mother of a child with autism and another with ADHD, Notbohm's books provide an enlightening glimpse into the minds of children on the spectrum, and have been an eye-opener for many people who are coping with a new ASD diagnosis or wondering how to interact with a child with autism. This excerpt is from Ten Things Every Child with Autism Wishes You Knew and is posted here with permission from the author (please contact her for permission to reproduce in any way, including re-posting on the Internet).

Ten Things Every Child with Autism Wishes You Knew

By Ellen Notbohm

Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute -- the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look “normal” but his behavior can be perplexing and downright difficult.

Autism was once thought an “incurable” disorder, but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics. Equipping those around our children with simple understanding of autism’s most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood.

Autism is an extremely complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front-of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly – every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.

Here are ten things every child with autism wishes you knew:

1.) I am first and foremost a child. My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.

As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be: Why try?

2.) My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for me:

My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out. I am dangerously nauseated.

Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.

3.) Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4.) I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “Jamie really burned up the track,” I see a kid playing with matches. Please just tell me “Jamie ran very fast.”

Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

5.) Please be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.

Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.

6.) Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.

A visual schedule is extremely helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations.

I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.

7.) Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one “right” way to do most things.

8.) Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included.

I do best in structured play activities that have a clear beginning and end. I don’t know how to “read” facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to say “Are you OK?”

9.) Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.

Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.

Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.

10.) Love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t she…..” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you -- I am worth it.

And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.

They may have had autism too.

The answer to Alzheimer’s, the enigma of extraterrestrial life -- what future achievements from today’s children with autism, children like me, lie ahead?

All that I might become won’t happen without you as my foundation. Be my advocate, be my friend, and we’ll see just how far I can go.

© 2005 Ellen Notbohm.To contact Ellen or explore her work, please visit http://www.ellennotbohm.com.

Back in April, I wrote a series of posts for Boston.com's Child Caring blog in honor of Autism Awareness month. You can find them all here at WriteEditRepeat.

Focus on: AutismSpot

April is Autism Awareness Month, and each week this month I'm focusing on issues about autism at Boston.com's Child Caring blog. This week, I profiled Kent Potter, a father of two and the founder of Autismspot.com.

Kent and Angie Potter's oldest son, Sam, was born prematurely, and from the very beginning they had a swirl of doctors and specialists around them, helping them navigate the world of preemie development. So when Sam started exhibiting severe developmental delays (above and beyond the ones most preemies have), they had people to turn to for advice.

An autism diagnosis quickly followed, and they began their search for ways to help Sam, who is now 8 years old (their younger son, Luke, 4, is neurotypical). "We were spending over $100K on medical care year after year," Kent Potter recalls. "My accountant said, 'You spent $500,000 in med care the last few years, what’s next? What are you going to do?' And I said, 'I’m going to do something about it'."

That something was AutismSpot.com, a website dedicated to inspiring, informing, and educating people about autism.

With a free online library of blogs, articles, and about 400 videos from parents, teachers, therapists, and medical professionals -- plus 120 or so more on their educator-training platform, SpotUniversity.com -- AutismSpot aims to make information from private providers accessible in a community environment. "You know the last five minutes of a therapy session, when the therapist tells you, 'This is what you should work on at home'?" Potter says. "Many people can't afford to meet with these providers." AutismSpot focuses on offering as much information as possible -- not just the popular ideas. "We don't have to agree on what works," Potter says, "just that there are many options... It's not just about talking. It's about communication."

April is National Autism Awareness month. Each week this month, I'll devote a post to issues that relate to life on the spectrum and the special parenting challenges that autism presents. After last week's post, many readers emailed or wrote comments asking for resources for parents of kids on the autism spectrum, and for information for adults with autism. Here are a few others:

AutismWeb.com: A parents' guide offering news, conference information, educational resources, and interactive message boards.

Wrongplanet.net:
The forums here are geared toward people of all ages on the Autism Spectrum, with threads for parents, school and college life, jobs, and social skills, as well as active forums on adult autism issues and discussions.

The Autism Research Institute: In addition to information for parents dealing with new autism diagnoses, Autism.com offers resources for those searching for a doctor affiliated with Defeat Autism Now! (DAN) and information about possible autism triggers and the controversial idea of autism recovery.

Parents, please weigh in: What resources have helped you the most?

Austism Awareness: Does my child have Autism?

April is Autism Awareness Month, so each week this month I'll be posting about issues related to Autism Spectrum Disorders and the parenting challenges they present. I'm kicking it off with an excerpt from a great interview with autism activist Mika Bradford and an overview of ASD over at Boston.com's Child Caring blog.

Most people hear the word "autism" and automatically think of Rainman, the 1988 film starring Dustin Hoffman as an autistic savant with an affinity for numbers and a painful need for routine. But as any parent with a child on the Autistic Spectrum knows, most forms of autism look nothing like that.

So, what are Autism Spectrum Disorders? According to the National Institute of Mental Health (NIMH), "Autism Spectrum Disorders (ASD), also known as Pervasive Developmental Disorders (PDDs), cause severe and pervasive impairment in thinking, feeling, language, and the ability to relate to others."

Our 10-year-old son was diagnosed with Asperger's Syndrome about five years ago. Asperger's is a very mild, or "High Functioning" form of autism, and it took time for family members to come to term with the diagnosis. "But he smiles and laughs and is affectionate! He can't be autistic!" one insisted. "That's can't be right," another declared. "He's just a quirky kid."

Some parents notice something different about their child from the beginning. Others see a change in a child who had been developing normally. Still others notice mild developmental issues that make them wonder if their child is just quirky, or if there's a larger problem looming. "Is it autism?" one mother asks herself. The answer: "Does it matter?"

Not in terms of how you love your child. But in terms of how to help your child navigate life? Absolutely.

April is National Autism Awareness month. Each week this month, I'll devote a post to issues that relate to life on the spectrum and the special parenting challenges that autism presents. This week, I'd like to introduce you to autism activist Mika Bradford.

Bradford became involved in the autism community nearly a decade ago, when her youngest son was diagnosed with autism as a toddler. A certified nutritionist, sales rep for nutritional supplement maker Kirkman, and a content specialist with AutismSpot, she has held a variety of positions with North Texas's Families for Effective Autism Treatment and is the founder of Natural Foods and Nutrition Consulting, Inc.

"My experience early on in my journey through autism was devastating and downright humiliating," Bradford says. "I am not alone when I say that many medical professionals belittled me and the questions I asked on behalf of my son. In the beginning, I had resentment but, over the years, I have come to realize that in many ways the physicians are just as much victims of the system as we have been."

For readers who don't have children on the spectrum, could you please share a couple of facts that surprise people when it comes to autism?

I think people are most surprised to learn that children with autism can get better, so much so that some children are considered to be recovered, losing their diagnosis. While this is not the outcome for every family, what we do know is that the quality of life for each child with autism can be improved.

Your readers may also be surprised to learn that many everyday things like what the children eat and drink can impact their moods and behaviors greatly. Research from major teaching universities are confirming what parents and a handful of professionals have known for over a decade -- that this condition is not only about the brain, but is affected by the other systems of the body.

Many people think that all children with autism are gifted, having special abilities. Only a handful of individuals with autism have "special skills." Most individuals with autism have difficulties in communicating, which can lead to inappropriate behaviors. The general public may see how parents handle these situations and not understand the reasoning of what is being done. Many parents, including myself, have spent thousands of hours and dollars learning how to parent using a positive approach, shaping the responses of the child (which ultimately hinges on our actions and behaviors as parents and caregivers). That may sound like common sense, but it is amazing how many parents of neuro-typical children never look at how their actions are impacting the responses of the child.

There are so many disorders that fall on the Autistic Spectrum -- Asperger's, ADD, SID, PDD-NOS, just to name a few. What are some of the "early warning signs" that a parent should watch out for?

Some of them are listed in Unraveling the Mystery of Autism and Pervasive Development Disorder: A Mother's Story of Research and Recovery by Karyn Seroussi. If a parent is concerned about their answers to some of these questions, then they need to speak to their physician about an autism screening.

Does your 18-month-old child's language development seem slow?
Has he lost words that he had once mastered?
Is he unable to follow simple commands such as "Bring me your shoes?"
When you speak to him, does he look away rather than meet your gaze?
Does he answer to his name?
Do you or others suspect hearing loss?
Does he have an unusually long attention span?
Does he often seem to be in his own world?

Autism is a developmental disability that impairs social and language development. It occurs in families from every class, culture, and ethnic background. It is not a mental illness, and it is not caused by trauma -- it is neurobiological and its symptoms can be greatly reduced by early diagnosis and treatment.

How has the autism community -- resources, research, treatment options -- changed in the 10 years since you first became involved with it?

Well I guess you could say it is completely different. When I started in the world of autism, very few people had even heard of dietary or nutritional support for autism. Families were told to just go home and love their children the way they were and instructed to look for long-term care and placement for the future. In just 10 years, the amount or resources has more than doubled. We now know that environment does affect autism and that this condition is not static as once believed. Researchers from prestigious universities like Harvard are confirming that this population has gastrointestinal and immune-mediated conditions that directly impact the behaviors and coping skills of these children. Treatments that are now available range from vitamin therapy to Applied Behavior Analysis to Hyperbaric Oxygen Therapy.

According to US Department of Education data, the number of autism diagnoses in children in the US has risen 644 percent from 1992-1993 to 2000-2001. Are doctors simply more aware of autism, and so are able to better diagnose it? Or are things previously dismissed as "quirks" now considered symptoms?

The diagnostic criteria have not changed that drastically in the past 10 to 15 years to account for the monumental increase in Autism Spectrum Disorders. If this was a condition that has risen due to better diagnoses, then where are all the adults with autism that should be accounted for? If the increase were due to children being reclassified, we would see the autism diagnosis increase and other disabilities decrease -- this has not been the case. The children who are now being diagnosed would never have "passed" as just being quirky. These children clearly have significant communication and social deficits that are debilitating.

What would you tell a parent whose child has been newly diagnosed with PDD-NOS?

I would encourage parents to leave no stone unturned when looking at what is the right therapy and intervention for their child. I would encourage them to give everything they have when trying to meet the educational and behavioral needs for their child. We have a saying in the world of autism, "You either pay now or pay later." This means that you ultimately have to find an effective way to deal with the challenges of autism. By providing the resources and support the child needs early on, you may bypass secondary consequences that would have arisen from those needs going unmet.

Parents must also give themselves grace. You must pace yourself to prevent burn out and, regardless of your financial resources, know that you can positively impact your child's life. Autism is an expensive condition to treat and live with, but resourceful families have found ways to work the system regardless of what funds are or are not available. You can do autism on a budget, it just may require a bit more planning.

Last, no matter what levels of functioning your child may be at, know that there is HOPE!

Click over to the entire interview with Mika Bradford right here at Write. Edit. Repeat. Coming up next week: A look at AutismSpot.com, a great free resource for parents and educators, and some insight into what it's like to parent a child on the spectrum.