It's so tempting to read those blaring headlines and leap onto those gleaming bandwagons.

Today's headline on the BBC reads Problem pregnancy 'autism risk' -- suggesting to the offhand reader that a difficult pregnancy somehow causes autism.

Dig just slightly deeper -- to the blurb -- and you read something a bit different: "Complications during pregnancy and giving birth later in life may increase the risk of having a child with autism, a review of dozens of studies suggests." What this says is that someone reviewed existing research and found that we already have some information about correlations between certain prenatal issues and autism. Most significantly, we know (and have known for a long time) that there is a correlation between older parents and autism. We don't know, however, whether these correlations can be interpreted as cause and effect.

Dig a bit deeper -- into the article itself -- and you learn that:

The cause of the condition [autism] is unclear, and the review team from the Harvard School of Public Health said there was "insufficient evidence" to point to any one prenatal factor as being significant.

In other words, there are apparent connections between certain prenatal factors and autism -- but we don't know whether these apparent connections are causal or not. In fact, we don't even know whether these factors are significant or not.

Given the limpness of these findings, perhaps the headline should read "Review of Studies Shows We Still Don't Know What Causes Autism (Though It's Best to Have Babies Younger and to Stay Healthy During Pregnancy)."

But lack of evidence doesn't stop authors, bloggers and product salesmen from offering you advice on "how to prevent autism during pregnancy." Google the term, and you'll find plenty of information about how changing your diet during pregnancy and avoiding exposure to everything from pesticides to antibiotics will prevent autism. Of course, you can't possibly hurt your unborn child (and you could improve his overall health) by eating healthy foods or avoiding toxins. Avoiding treatment for maternal disorders, though, could cause far more problems than it prevents.

July Fourth is one of those lose-lose holidays for folks on the autism spectrum. If the noise doesn't make you nuts, the crowds will. If the crowds don't bother you, the gluten-and-dairy-filled desserts are likely to do you in. Meanwhile, it's almost impossible to avoid SOME celebration of our national holiday: even if you're safely tucked in bed, you'll wind up having to cope with the noise of "rockets' red glare!"

If you're a family about to cope with July Fourth on the autism spectrum, you'll want to explore Terri Mauro's fabulous collection of resources, ranging from ideas for managing noise to recipes for gluten free cookies! In fact, if you're a parent raising a child with autism, you can't do better than to explore Terri's entire Special Needs Parenting site here at About.com.

By the way - our own "secret" to managing fireworks: buy a pair of the earphones used by jackhammer operators. They do a great job of muffling the sound, and they're terrific in the dentist's office too (the sound of the dentist's toothbrush can make my son nuts!).

Summer Travel and Autism

Summer Programs for Kids with Autism

The Interactive Autism Network (IAN) is a research project of the Kennedy Krieger Institute in Maryland. Through focus groups and surveys of families living with autism, they've built an impressive collection of reports and findings -- and both the network and the findings are growing fast.

A few months ago, IAN produced Part One of a report on family stress and autism. Today, Part Two came out. Of course, one of the greatest stressors on families living with autism is money -- and the lack of it. Many families feel they've sacrificed a great deal on behalf of their child with autism. One father is quoted as saying:

“We are financially crumbling. We put most of our money towards supporting our son’s therapies and biomedical interventions. His behaviors change and his health suffers when we deviate, so we simply do not. Still, we will cap out soon on our home equity line of credit and then we will run up the rest of the credit cards to their limits in pursuit of helping him. The creditors will come after us, and we will press on -- we will never stop helping him…. I am his voice. He is my heart.”

With such heartbreaking stories to read, I was surprised by the graph showing how much families actually spend out-of-pocket on autism treatments. The graph is broken down by diagnosis (autism, PDD-NOS, Asperger Sydnrome, "Other ASD").

Not surprisingly, parents of children with classic autism have spent the most money, while parents of children with Asperger syndrome have spent the least.

Much more surprising is the amount: an average of $6,100 per year for classic autism - and less than $4,000 per year for Asperger syndrome. Given that behavioral therapy for autism can easily cost tens of thousands per year, and private schools for children with autism average around $50,000, how is it that most families spend so much less?

Assuming that families like the one cited above are actually spending top dollar, is it possible that many other families are spending far less than $6,000 per year on treatments and programs for their child with autism? If so, are they providing the treatments and programs through public school, insurance and medicaid? I find it hard to believe that parents who have actively sought out, joined, and taken part in IAN surveys are providing their children with no treatment at all!

What are you spending out of pocket on autism treatments? Does the IAN survey reflect your reality? Vote in the poll!

I received a press release yesterday, signaling the resignation of a second major player at the huge non-profit Autism Speaks. Last time, the resignation letter came from Alison Singer, Executive Director of Autism Speaks. This time, the letter of resignation (published in Singer's new Autism Science Foundation blog) comes from Dr. Eric London, co-founder of the National Alliance for Autism Research (NAAR). NAAR, along with Cure Autism Now, merged with Autism Speaks several years ago.

Both Singer and London resigned over the same basic issue: vaccines. For a long time, the scientific and administrative leadership at Autism Speaks kept clear of vaccine-related research, based on existing epidemiological research showing no connection between vaccines and autism. But pressure from celebrities and advocacy groups, supported by Katie Wright (daughter of Autism Speaks' founders Bob and Suzanne Wright) have pushed the organization to take up vaccine-related research as a "biologically plausible" cause of some cases of autism.

According to Dr. London's letter:

...the pivotal issue compelling my decision is the position which Autism Speaks is taking concerning vaccinations. The arguments which Dr. Dawson and others assert– that the parents need even further assurances and there might be rare cases of “biologically plausible” vaccine involvement –are misleading and disingenuous. Through its website and other communications, Autism Speaks has been influential and contributory in encouraging parents’ doubts. By preferentially investing and advocating for the use of limited financial resources on the “biological plausibility” argument, the organization is adversely impacting the advancement of autism research.

Recent reports have documented significant outbreaks of measles and other infectious diseases which could have been controlled and even eradicated. The lowering of the vaccination rate has already led to deaths. If Autism Speaks’ misguided stance continues, there will be more deaths and potentially the loss of herd immunity which would result in serious outbreaks of otherwise preventable disease. I further fear that if and when herd immunity is lost, there may be a societal backlash against the autism community.

If I read Dr. London's words correctly, his concerns are not just political but also practical. What he's suggesting is that, by encouraging fears of vaccines, Autism Speaks may actually be condemning some children to illness and even death as a result of diseases now considered preventable.

What do you think of Dr. London's letter? Are you in agreement with his concerns? Share your thoughts!

Autism Yesterday is a half-hour documentary produced by J.B. and Lisa Handley and Generation Rescue. The Handleys, for those who don't know them, are the parents of a child with autism and the founders of Generation Rescue, a non-profit dedicated to the biomedical treatment and cure of children with autism.

Early on, the Handleys were "the" spokepeople for the biomedical movement. Today, Generation Rescue is described as "Jenny McCarthy and Jim Carrey's Autism Organization," and the website is covered with images of the stars. A photo of Jenny with a shopping bag carries the slogan "let's go shopping," and ads for various site sponsors cover the right-hand side of the front page.

In a sense, "Autism Yesterday" represents a return to the early, non-commercial days of autism activism. It's a beautifully-produced half-hour documentary featuring families facing autism and -- at least according to the film -- curing their children. The website for the film is absolutely simple: no jargon, no marketing message, no links, no images of big-eyed children.

The message of "Autism Yesterday" is that autism is caused by ingredients in vaccines and can be cured through a variety of biomedical interventions including but not limited to supplements, special diets, chelation (removal of heavy metals from the body), etc. The theory presented is that government agencies, conspiring with large pharmaceutical companies, know the dangers posed by vaccines but have chosen to bury their knowledge.

Interestingly to me, virtually all of the families presented in the film (and in most materials supporting biomedical treatment) are described as perfectly normal until they received their vaccines. According to the anecdotes, the children immediately became seriously ill, and never recovered either physically or developmentally until they were treated according to the DAN! (Defeat Autism Now) approach to autism intervention.

Fever, stomach upset, bowel problems, and other gastrointestinal illnesses are not a part of the definition of autism. Some studies suggest that children with autism are more likely to develop these problems -- but many studies suggest just the opposite. Why do these particular children have significant medical issues? So far as I'm aware, no one knows.

The medical mainstream is adamant that there is no connection between vaccines and a huge rise in autism diagnoses -- while the biomedical community is equally adamant that there's a conspiracy to harm our children. What that means is that while some will see the Handley's, their video and their support of the biomedical movement as a boondoggle -- and potentially harmful to children and their parents -- others will see them as crusaders, speaking truth to power.

Have you seen the video? What do you think of it? Share your thoughts!

Last week a new autism-related website launched with the name "RethinkAutism." While the name is similar to the sexy site I blogged about last week, the content is radically different. In essence, Rethink Autism is an online tutorial for parents interested in providing their children with behavioral lessons with or without without the involvement of an Applied Behavior Analysis (ABA) therapist. The site offers videos and lessons plans for a fee, and you can see sample lessons on their site. Here's their mission:

The mission of rethink autism is offering parents and professionals immediate access to effective and affordable Applied Behavior Analysis-based treatment tools for the growing population affected by autism spectrum disorders. Our web-based platform includes a comprehensive curriculum, hundreds of dynamic instructional videos of teaching interactions, step-by-step training modules, and progress tracking features.

After visiting the site and viewing the sample, I have to say I wasn't quite sure how to react. Yes, the video was clear and the interaction between therapist and child was positive. But the demo lesson -- "Appropriate Hands While Sitting" -- confused me.

The program is really designed for home use (as opposed to classroom use), and I've never heard the term "appropriate hands" used in a home setting. Truth is,so far as I know there is no special reason why a child should be taught to put his hands on a table in front of him (rather than at his sides, on his knees, etc.). I can only assume that the hidden agenda for the lesson was to either halt masturbation or limit "stimming" (self-stimulation through hand flapping or positioning). Since "stimming" is a self-calming activity for many children on the spectrum, I have to wonder whether "extinguishing" the behavior at home is really necessary or even a good thing.

As I looked through additional lessons, I found that the demos included some that seemed more like speech therapy than like behavior therapy (teaching the use of prepositions), some that were academic in content, and some that were very generally focused on social skills ("Helping Others"). There was no general table of contents, so I was unable to determine whether any of the lessons were really appropriate for parent/child home use -- that is, focused on ordinary daily life skills that parents typically teach to children. I found, for example, no lessons on tooth brushing, table skills, managing trips to the grocery store, and so forth.

I invite you to visit the Rethink Autism site, and let us know what you think. Would you use these lessons with your child? Do you approve of a tool that allows parents to provide behavioral therapy without the involvement of a therapist? Share your thoughts!

In response to an earlier blog, a commenter writes:

This remark bothers me: “The limits of autistics should constantly be pushed and their educational materials should never be simplified.” While this sounds great in theory, since my 2 year old son was diagnosed a few months ago I have grown increasingly skeptical of the conventional approach of many I have learned about. if your child was deaf, you wouldn’t try to force him to act as if he could hear or refuse to teach him sign language in an effort to force him to develop the ability to hear. I agree that we need to help our children develop all of the skills they can, but I think you have to hold them back in some areas if you spend all your energy and their time forcing them to do things that are incredibly difficult for them. It rather reminds me of these places where they take immigrant children who can’t speak english and stick them in a classroom where only english is spoken. meantime, how do they learn math and science? I want my son to learn how to talk, but if he naturally solves problems better visually, or if he learns more about the world using his tactile functions, or if he does not have adequate working memory to simultaneously have a complex thought and look me in the eye, how can it POSSIBLY be good for him to try to force him to (a) look me in the eye; and (b) say: “more food please” for every single bite of food? I was recently given this advice and I think it is obviously bad. This doctor’s quote smacks of this attitude which I think is extremely ill-conceived.

The idea of "challenging" a child with autism is, in my opinion, quite different from the idea of "insisting upon certain styles of learning or communication." And I believe that the researcher cited was thinking of "challenge" in terms of playing to strengths. The researcher was, after all, commenting the finding that people with autism can do very well indeed, when the test looks at visual as opposed to verbal abilities.

Like everyone else, people with autism have strengths and weaknesses. And, like everyone else, people with autism prefer to play to their strengths. Few people with autism are strongest in the areas of social communication! Many, though, are strong in areas of math, music, memory, and so forth. We've found that our son becomes anxious when challenged in areas of social communication, and shuts down when pushed too hard. But in the area of music, with the right teacher, he can excel -- and thrives when pushed beyond his areas of comfort. The issue raised by the researcher is that most teachers assume incompetence when a child with autism does poorly on a verbal test -- when we know that children with autism are verbally challenged. Rather than continuing to challenge the child verbally, then, doesn't it make sense to also raise the bar in other areas? In my experience, most children can and do rise to a challenge, assuming that the challenge is well-conceived and that the teacher or coach truly grasps the child's learning style.

Autism can come between fathers and sons.

Here in the US, role models for father-son bonding usually revolve around sports, camping, or projects involving power tools - rarely ideal options for boys on the autism spectrum.

All too often, Dads are in the dark about their children with autism. They're off at the office while mom sits in on IEP meetings, therapist's sessions and doctors appointments, and have few opportunities to learn about their child's disorder or how to be a part of the treatment.

Yet despite frustrations, confusion, anxiety and even fear, autism dads figure out how to make those connections, and how to be there for their child with autism.

Some Dads start up special sports leagues, just so their child can play - and others help to coach. Some Dads find an area of shared interest with their child, and build a hobby together. Some Dads become dedicated advocates for better autism programs, treatments or education. Some Dads literally build communities so that their child with autism will have a terrific place to live when he or she grows up.

Here's to all those dads - and thanks for all you do.

RethinkingAutism.com is a new website, conceived and created by Dana Commandatore. According to the website Terra Sigillata:

Dana is a former NYC advertising guru and the mother of Michaelangelo, a child with autism. His story inspired her to write the children's book, Michaelangelo the Diver.

Dana has now taken her creativity and contacts in her new home of Los Angeles to produce a series of controversial public service announcements to combat misinformation about the causes and treatment of autism and the acceptance and celebration of neurodiversity.

As I understand it, Dana has determined that since sexy Jenny McCarthy seems to be using her charms to "sell" her biomedical perspective on autism, why not use a sexy model to "sell" a different point of view? With that idea in mind - and tongue presumably planted firmly in cheek - she has made five short videos.

The videos, which star family friend and model, Leanne Tweeden, are basically highly-produced peep shows accompanied by stripper music. Behind the sexy, nearly-naked model are panels proclaiming messages about autism (she favors educational inclusion, feels that there's no link between autism and vaccines, supports a neurodiversity perspective, etc.).

In theory, these videos - and the website, which includes a page of information about autism and Commandatore's perspective on autism - are intended as a way to raise awareness and educate the public. So far as I can see, however, the public is far more likely to respond to the medium (sex) than to the message (let's be sensible about autism).

In my opinion, Commandatore may get a good deal of personal publicity for her arty and provocative style. She's also likely to get a lot of flack for her anti-feminist, disrespectful approach to autism education. She's unlikely, however, to make much impact as an educator.

What's your take on RethinkingAutism.com? Comment here, or take the poll (you can click on more than one opinion).

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Bonny Albo, the About.com Guide to Dating, just alerted me a review she's written about a book called 22 Things a Woman Should Know if She Loves a Man with Asperger Syndrome.

Bonny gave the book four stars, though she notes that it's written entirely from the point of view of just one woman (author Rudy Simone).

Not having seen the book myself, I can't venture an opinion (except to agree with Bonny that a few words from an actual man with Asperger Syndrome would be a plus!).

Have you read the book? What's your opinion?