Picky or ASD?

This Time Health article asks: Is picky eating an early sign of autism?

Pickiness about food is one of those early signs that is just as easily interpreted as normal toddler behavior, especially if one factors out the intensity of the behavior.

C has always been more than just a picky eater: the mere sight of an unexpected food item on his plate would send him into an apoplectic state. The rejection of different foods wasn't based on taste or texture: it was the mere presence of something unexpected—something out of the normal routine—that would cause the breakdown.

This caused a lot of anxiety because many kids with his lung disease end up on feeding tubes (their bodies burn extra calories trying to keep their oxygen levels up), and he was already in the fifth percentile for weight. Fortunately, the staples of C's diet were hearty.

When we started to suspect autism, we learned that many other parents of ASD kids were experiencing the same thing. (By contrast, C's twin M will eat—or at least try—almost anything, a trait that probably puts him at the opposite extreme!)

The good news is that with a lot of ABA therapy, C is becoming more tolerant of a wider variety of foods: we started by simply placing different food items on his plate, and telling him that if he didn't want them, he could remove them himself. Getting him to touch the food—and therefore to interact with it—was the first small step toward ultimately getting him to try it.

While C would still be defined as a picky eater, the meltdowns occur far less frequently, and he now eats, or at least tries, a wider variety of foods.

A Major Setback for Autism Research

"A freezer malfunction at a Harvard-affiliated hospital has damaged a third of the world's largest donated brain tissue for autism research."

In addition to the apparently senseless loss of invaluable donated research material, scientists estimate this could set autism research back a decade.

Read the entire article here.

My thoughts: I have a hard time accepting this may have been an accident; with so many safety measure in place, it seems difficult to believe they could have all failed simultaneously. Nonetheless, if it's not foul play then it's surely gross negligence.

Time is our enemy in the autism battle, and we've already wasted a decade on the debunked (and fraudulent) vaccination link. While none of us wants to think about our own mortality, this story reinforces the dire need for organ donations. Learn more here.

Dear France: It's Neurological

This morning a friend sent me a story from the BBC ; to say that I am shocked and appalled would be putting it mildly. In short, France still views — and therefore treats — autism as a psychological disorder, rather than a neurological one.

The French system relies on Freudian psychoanalysis and psychotherapy, and rejects the much more widely-adopted — and effective — ABA therapy. The result, as one might expect, is that French children do far more poorly than children elsewhere who live in countries where ABA therapy is the primary basis of the treatment regimen.

"In the UK there are 17 times more university students with autism than in France. It is unacceptable." — Daniel Fasquelle, Member of French Parliament

This reliance on psychotherapy rather than behavior therapy points to an underlying perception that autism is some form of character defect on the part of parents and child alike. It means treating the personality, rather than modifying the behaviors that so dramatically affect the lives of those with autism.

At present, there are no therapies to treat the neurological manifestations of autism, though I do believe those will come in time. Until then, ABA and a few other accepted, proven therapies (e.g., Greenspan's Floortime) represent the best chance for children with autism to lead better lives. It is devastating to think that in a modern country like France, ASD children would not be able to get the help they need because of such a fundamental misperception.

My Autism App: A Setback

Unfortuantely, my plans to develop a simple Web- and app-based autism evaluation tool for concerned parents has hit a snag: the American Psychiatric Association denied my request to use their DSM criteria for autism as the basis for the tool. However, hope is not lost: I have some ideas about how I might incorporate other diagnostic criteria into the tool, and in the process make it an even more robust and interesting experience. It's not back to the drawing board, but onward and upward.

Visualizing the Autism Spectrum

What do you envision when someone says, "autism spectrum"?

Like most people, you probably imagine a line going from mild to severe, or good to bad, or something similar. At one end would be neurotypical (non-ASD), at the other severely autistic.

The problem is that's not how the spectrum works. I learned this when C was diagnosed and I, like any parent, wanted to find out where he was on this so-called spectrum. Was he in the middle? Toward the more severe end?

It wasn't that the experts couldn't or wouldn't answer me. It's that I was asking the wrong question. I wanted to be able to plot his autism on a linear scale, but the autism spectrum isn't linear at all.

So I did my own research to figure out what C's autism looked like. I felt like visualizing it would help me understand where his strengths and weaknesses were. However, several trips to Google left me more befuddled than ever: there wasn't any agreed-upon visualization of the autism spectrum.

Since I earn my living trying to make complex things simple and easy to understand, I decided to create my own autism spectrum diagram, something that would provide a more accurate representation of the condition.

I based my visualization on the fact that there are three generally accepted axes for ASD: social, communication, and behavioral.

On each axis, the range goes from typical — what we'd expect to see in a non-ASD individual — to severely impaired. Here are the generally accepted criteria for each axis:

Social Impairment

Problematic nonverbal behaviors; failure to interact appropriately with peers or make friends; playing alone while other children the same age approach each other, cooperate and imitate each other; problems sharing interests, achievements or pleasure with others; problems responding to social and emotional cues.

Communication Impairment

Delay or absence of speech with no attempt to compensate by using gestures; an inability to carry on a conversation even when speech is adequate; stereotyped and repetitive language; lack of imaginative play.

Repetitive Behaviors or Interests

An interest of intense or abnormal focus; rigid adherence to a routine or ritual that has no purpose; repetition of particular movements or gestures; persistent preoccupation with parts of objects.

My Visualization of the Spectrum

My diagram helps visually distinguish the three primary forms of ASD — Autistic Disorder, Asperger Synrdome, and PDD-NOS — from one another. (C has Autistic Disorder.)

Plotting the level of impairment is subjective, of course, and one's point on each axis may change over time, with therapy and other treatments. Nonetheless, what my diagram shows is that the so-called autism spectrum doesn't result in a single point plotted on a line, but several points that create a shape, a map of each individual's unique ASD landscape.

Of course, the diagrams above are hypothetical, not based on any particular individual. In reality, each individual would map differently based on their own levels of impairment.

What Do You Think?

My diagram is a work in progress. I'm not formally educated in ASD, obviously, but I felt this format was helpful. What do you think? Let me know.