Last week, I asked whether readers felt the diagnoses Asperger syndrome and PDD-NOS (pervasive developmental disorder not otherwise specified) should be removed from the diagnostic manual. If they were removed, people with those diagnoses would presumably be reclassified as simply "on the autism spectrum."

A signficant majority of you (65%) felt that those diagnoses were useful and meaningful enough to continue to be listed in the DSM-V (the new version of the manual used by mental health diagnosticians).

Now for the big question: Is Asperger syndrome appropriately included under the autism spectrum umbrella? Or should it, perhaps, be a separate diagnosis of its own, unconnected to autism?

People with autism often have special gifts and talents.

Some are autistic savants - uniquely gifted prodigies in areas like math, music and language. Others surprise their parents, therapists and teachers with abilities that no one ever asked about - perfect pitch, an impressive talent for drafting and rendering, an amazing eye for morphological detail in plants and animals, or a terrific ability to learn and speak foreign languages.

In recent days, I've read about autistic artist Stephen Wiltshire, and received a gorgeous, full-color coffee table book called Drawing Autism, which is stuffed with outstanding artistic expressions by autistic artists of all ages. And just this morning, I received an email from my cousin with a link to a series of videos about a blind, autistic musician with impressive talents.

Two days ago, for the first time, I heard my son singing in the shower. And - who knew? - he has a lovely soprano voice, and can imitate the voices of professional vocalists he's heard on TV and radio!

If you're an adult with autism, what are your gifts? If you're a parent, what are your child's?

Follow me on Twitter

Could two major autism diagnoses vanish into the mist?

According to an article in the New York Times, it's quite possible.  Both Asperger syndrome and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) are edging closer to the chopping block.  The  fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) may eliminate the terms:

...[if some] experts have their way, Asperger's syndrome and another mild form of autism, pervasive developmental disorder not otherwise specified (P.D.D.-N.O.S. for short), will be folded into a single broad diagnosis, autism spectrum disorder -- a category that encompasses autism's entire range, or spectrum, from high-functioning to profoundly disabling.

"Nobody has been able to show consistent differences between what clinicians diagnose as Asperger's syndrome and what they diagnose as mild autistic disorder," said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual.

"Asperger's means a lot of different things to different people," Dr. Lord said. "It's confusing and not terribly useful."

Of course, this is a hugely controversial idea.  Personally, I feel there's far too little distinction among "autisms" as it is.  I'd like to see autisms split into disorders that do and don't, for example, include physical, sensory or psychological symptoms - not further homogenized into a collection of people with every level of function, every type of symptom and every type of ability.

Where do you stand on this complex issue?

The burning questions surrounding autism are huge: what causes the disorder?  what treats it?  what cures it?  While lay people want answers to these questions NOW, science is a slow and painstaking process.  And while parents and caregivers may feel they already know the answers, researchers are more skeptical.

These differences are appropriate.  After all, researchers are following the scientific method in a (hopefully) objective manner, while parents and caregivers are raising kids and supporting adults who need help - right now.

But while scientists are certainly right to take the slow, methodical, step-by-step approach to finding answers, they may need to look to parents and families to formulate the questions.

All too often, researchers conduct research that they feel should be convincing and authoritative, only to find that parents and lay individuals are far from impressed.  In particular, studies which intend to reassure parents regarding the safety of vaccines or the non-association between autism and various environmental factors, are often disregarded.

There's a reason for this.  And it's not simply that non-scientists "don't get it."  For example, when a researcher says "epidemiological studies show that any risks associated with vaccines are far less than the risk posed by the disease against which the vaccine operates," parents may believe him.

But that doesn't settle the question: "how can I tell whether a vaccine is likely to injure my individual child?"  Nor does it explain "what happened when my child was vaccinated and appeared to regress almost immediately?"  The answer, all too often given, is "it was a coincidence," or "perhaps your memory failed you."  While coincidence is certainly a strong possibility, it's tremendously frustrating to parents to have their observations summarily dismissed.

When a study states that no connection has been found between gastrointestinal issues and autism, parents may point to other studies which seem to suggest that there IS such a connection.  They may also point to dozens of autistic children whom they know of personally who seem to have GI issues.  Their question: "is there a subgroup of children with autism who also do have GI issues, and if so - why?  and what do we do about it?"

When findings suggest that "children with autism" have certain qualities, or that certain treatments are effective or ineffective, it's helpful in forming policy.  But since individual children with autism may have radically different symptoms, abilities and histories, those findings are not particularly helpful for individual families.  In fact, so far, there's no evidence that one treatment approach or another is a better choice based on a child's symptoms or challenges.

Clearly, researchers can't focus on the needs of individual children or families.  But as we move forward to better understand what autism is (or what autisms are), what causes the disorder in its various forms, and so forth, it's important for physicians and researchers to understand what families need to know.

In the long run, it's the decisions of individual families, schools, insurance companies and program providers that will make the difference for people with autism.  If science can't respond to their question and concerns, they will find their own answers - and act on them.

This morning, I read a NewsWise press release from Rochester General Research Institute which was clearly intended to alleviate parents concerns about the H1N1 vaccine.  Here is a portion of the release:

The injectable, multi-dose H1N1 vaccine contains the mercury-based preservative thimerosol to reduce risks of bacterial contamination. The presence of thimerosol has once again raised concerns whether there are risks posed to children when the tiny amount of mercury contained in thimerosol is included in a vaccine.  In a recent issue of the Journal of Pediatrics, however, a team of scientists supported by the National Institutes of Health reported findings that should alleviate those concerns. The researchers, led by author Michael E. Pichichero, MD, Director of the Rochester General Research Institute, Rochester General Hospital, Rochester, NY evaluated levels of mercury in the blood of the smallest children - prematurely born and low birth weight infants after they received a dose of a childhood vaccine containing thimerosol. They found the levels of mercury were exceedingly low.

The press release notes that children are exposed to mercury in utero because of the mother's exposure to airborne and food-borne mercury. It also explains that the type of mercury used in vaccines does not stay in the body, but is "cleared" within just a few days:

...the researchers also found the mercury levels in the vaccinated children were very low and quickly returned to pre-vaccine levels, usually within three to seven days. In 1999, when the first concerns about thimerosol in vaccines was raised, it was presumed that the ethyl mercury in thimerosol would behave in the same manner as methyl mercury in fish after ingested. The three NIH-supported studies clearly refuted that idea.

Finally, "Dr. Pichichero and colleagues concluded that with this latest data, it is time to recognize that the risk of exposure to thimerosol in vaccines is minimal to non-existent."

As a part of the autism community, I clearly recognize that this research will NOT put the mercury/autism debate to rest.

On the one hand, it seems clear that the quantity and duration of mercury present in a vaccinated child is very slight indeed; on the other hand, some parents will continue to worry about the impact of even that small quantity of mercury on their individual child. And it seems clear that the debate over vaccines, right now, is in part a conflict between those who are most concerned about public health and those who are most concerned about risks as they affect just one or a few individuals.

To find out how or whether it's possible to determine a child's individual susceptibility to injury, I've written to the researchers.  If and when I hear back, I'll post their responses here.

Follow me on Twitter!

I just finished reading a comment from a reader who notes:

I do not believe that homeschooling these [autistic] children is the best option as they need interaction with other children to aid their development.

I simply had to respond.

Those of us who homeschool their children - with or without autism - are accustomed to hearing others complain that homeschooling is isolating and therefore harmful to the child.  But we homeschoolers know that homeschooling - done even reasonably well - is far less isolating for a child with autism than is a typical school setting.

Sure, kids with autism may be in physical proximity with lots of same-age peers in a school setting.  But outside of physical proximity, there is rarely much in the way of real, contentful interaction.

Certainly my child "talked" with other children - when prompted.  And other kids responded - when prompted.  These staged interactions were essentially meaningless to both participants, but they did happen.  As often as possible, though, he tuned out the noise and chaos, and drifted away into his own world.  Even with a small class and a 1:1 aide, he found the entire experience of school so anxiety producing that he did his best to shut down, avoid challenges and confrontations, and be as non-existent as he could.

This worked out well for Tom: no one expected him to interact, learn, speak for himself, take on new tasks, or exceed expectations in any way.  And so... he didn't.  He drifted along.  Teachers said "he's doing great," which, translated, meant "he was quiet and didn't make waves."

As a homeschooler, Tom is challenged to exceed his own expectations of himself almost every day - and he does.  Not only that, but he interacts with a huge range of people in all sorts of settings, making real connections all throughout the community.  He is NOT lonely, or alone.

For example:

• He takes classes at a homeschool resource center with just a few kids who are within three years of his age.  Most of his work is hands-on, and it builds on his actual interests.  He's talks with, plays with, and even makes presentations to his few classmates and the teacher-turned-homeschooler who runs the classes.
• He takes clarinet lessons, practices, and rehearses and performs with the middle school jazz band.
• He's part of a youth bowling league, and his team is winning.
• He attends a weekly homeschool gym program, where he runs, jumps, climbs and actually plays with other kids.
• He receives math tutoring weekly from an expert in dyscalculia who, beyond all expectations, has Tom actually grasping number theory.
• He explores the natural wonders of our neighborhood, goes to the library, goes grocery shopping, cooks, builds, and attends homeschool fairs and field trips.
• He reads, writes, studies Spanish and learns to type, Google, take notes, and try out hands-on science projects with Mom and Dad.

Homeschooling may once have meant "be at home alone all day."  Today, it just ... doesn't.  For us, and for many families raising a child with autism, it's by far the most effective way to craft and provide our children with the education that works for him.

Thought you'd like to know!

Wherever you go in the autism world, there are autism moms.  There are warrior moms, advocate moms, hero moms and harried moms.  They congregate at conferences, meet up in waiting rooms during therapy sessions, and put together plans of action at special needs parent groups at school.

Some autism moms are all about nurturing; some are political; some are entrepreneurs; some are bloggers.  All, of course, are intensely involved in the lives of their children on the autism spectrum.

And then there are the autism dads.  There are the wholly invested, full throttle autism dads for whom their children and their children's autism are everything.  There are the supportive dads who do their best to be available whenever they're not bringing home the bacon.  There are the confused dads, who wish they could do more.  And there are those few dads who just can't handle the whole autism issue...

Whether you're an autism dad or a fellow traveler, tell us something about it.  Vote in the poll, leave a comment, or offer a tip to those autism dads who'd like to do more... but aren't quite sure how to make it happen.

Follow me on Twitter!

Time online's health blog weighed in on the vaccine-autism-H1N1 issue yesterday with a startlingly logical and reasonable perspective:

If we are to have a rational conversation about the best way to fight flu, infectious disease and autism, we need to recognize that these are scientific questions and use the best research--not the data that supports our preconceived views--to answer them.

With this very sane statement ringing in my ears, I'd like to share a few similarly straightfoward pieces on the subject of the H1N1 vaccine posted right here on  About.com by Trisha Torrey, our Guide to Patient Empowerment :

• How to Confirm or Debunk Pandemic Swine Flu Conspiracy Theories
• A Review of Pandemic H1N1 Swine Flu Rumors and Conspiracy Theories: Finding the Truth Among Fiction and Lies

Logic and reason, of course, have their limits... and where our kids' health is concerned, many of us succumb to emotional appeals.

Where do you stand on the H1N1 vaccine issue?

Typically, an excellent source for unbiased information about scientific research is the United States government.

When I want to know about geology, I go to the USGS.  When I'm researching oceans or climate issues, I go to NOAA.  When I'm curious about what's up with space exploration, NASA's a great resource.

When it comes to autism, though, many people doubt the legitimacy of the research findings supported and/or published by the CDC, the NIH or NIMH.  Not only that, but many doubt the findings presented by university-based researchers funded by the CDC or NIH.

Where else to look?  Pharmaceutical firms do fund and publish research.  But parents are even more skeptical of findings underwritten by the likes of Merck or Pfizer.

Then there are the privately funded researchers.  The folks who get their money through organizations like Autism Speaks...  or even from organizations with a biomedical slant, like Generation Rescue.  But plenty of people doubt the accuracy of findings that are funded by groups with a particular hypothesis to prove (e.g., vaccines or specific environmental elements are responsible for autism).

You could, of course, rely on the Internet and the broadcast media to keep you up to date on autism research and findings.  But that would mean counting on bloggers, talk show hosts and sound bites to provide reliable, balanced information...  not something I'd do on a bet.

Or you could ask friends and neighbors for their opinions, experiences, anecdotes and memories.  Unfortunately, though, these are notoriously unreliable: individual people are likely to forget details, make guesses based on partial information, or repeat what they heard from other friends who heard it from their mothers who picked it up from a report on the local TV morning show...

So who DO you believe on issues related to autism and science?  And how do you decide whose opinion counts?

Recently, Disney offered parents refunds for their purchases of Baby Einstein videos. The reason: the parents' babies weren't getting smarter after watching the videos, which had been the claim.

Today Stanton Peele, a blogger for Psychology Today, picked up on this story, and took it a huge step farther, asking - do videos cause autism? Here's how he puts it:

The play in schoolyards and preschools has slid toward more scripted acting. . . . An important determinant of a child's empathy and flexibility in play is how much TV and video programming he is exposed to. [emphasis in original]. . . .The TV or video experience tends to isolate the child. As he plays, his attention is on the images in his mind, not on the child next to him. ... Does acting in terms of an internal script - as opposed to reacting and being sensitive to others - sound familiar? It certainly has tones reminiscent of autism.

In other words, if your child watches too much TV, could he "go autistic?"

Interesting theory. I suspect it's based on an incorrect understanding of what autism really is - and what it isn't.

A child who plays "Hannah Montana" or "Jimmy Neutron" with his friends on the playground may be using a script. A child with autism may use a similar script. But he's not playing "Jimmy Neutron" with his friends. He's repeating the script over and over, to himself. Very often, he's repeating the words, not as ideas or as dialog, but as sounds.

If you were to ask the child who's playing "Jimmy Neutron" with his friends (using a memorized script) to tell you about Jimmy, he'd explain that Jimmy's the science whiz who can invent anything. If you were to ask the child with autism to tell you about Jimmy, chances are he wouldn't be able to do so - because his language and social communication skills are compromised.

As with so much else in the world of autism, opinions are as tied to appearances as they are to cause and effect. It LOOKS like autism could be caused by a thousand things - because a thousand things have changed since the rates of autism diagnosis started to rise.

Yes, kids started watching more TV. But at the same time... the Internet was invented, along with backpacks-on-wheels, cell phones, recycling bins and yogurt-in-a-tube. We've seen an increase in the amount of stir-frying and the use of jicama in American cuisine. Statistically, all of these things can be tied to an increase in autism diagnoses (along with a very real increase in asthma and allergies).

Meanwhile, my personal opinion is that video and TV, properly selected and used (as opposed to simply droning in the background) has tremendous potential to help kids with autism build social skills, connect with new ideas and interests, and become more aware of the culture around them.

For more on my take on TV and autism, you might want to read my article Good Reasons for Allowing Autistic Children to watch TV and Videos.

Follow me on Twitter!