Ben's father, Ron Miles, has published a memoir of his life with Ben, in which he narrates his journey as the father of a child with a profound mental disability, his love affair with Disney parks, and Ben's development through the extraordinary adults in his life (including some very special and caring Disney cast-members). It's an unflinching -- and sometimes unflattering -- account of the challenges of parenting and the special challenges of parenting a child with autism.

I read it very quickly, and often had to dab at my eyes, but it's not a weeper, really -- there's plenty of hilarity and thoughtful wonder and appreciation of the sweetness of parenting as well as the difficulties. Here's the blurb I sent to Ron for the book: "Brimming with heart and tragedy overcome, this is a book that captures the tribulations of parenthood, the magic of Disney World, and the wonderful online communities that allow us to lend aid and comfort to strangers around the world."

It's called 3500: An Autistic Boy's Ten-Year Romance with Snow White, and it's just out, and I heartily recommend it to you.

3500: An Autistic Boy's Ten-Year Romance with Snow White ]]> http://boingboing.net/2013/02/16/memoir-of-raising-a-child-with.html/feed 1 http://boingboing.net/2013/01/05/pedagogyofthedepressed.html http://boingboing.net/2013/01/05/pedagogyofthedepressed.html#comments Sat, 05 Jan 2013 14:00:06 +0000 Anonymous http://boingboing.net/?p=203936

In May 2013, "Asperger's Syndrome" will be removed as a diagnosis from the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), leaving "high functioning autism" in its place. I agree with this change. Given the importance of the manual, however, it's caused a lot of consternation and caused me to reflect upon my experiences.

To his father, Lars seemed less defined by deficits than by his unusual skills. And those skills, like intense focus and careful execution, were exactly the ones that Sonne, who was the technical director at a spinoff of TDC, Denmark’s largest telecommunications company, often looked for in his own employees. Sonne did not consider himself an entrepreneurial type, but watching Lars — and hearing similar stories from parents he met volunteering with an autism organization — he slowly conceived a business plan: many companies struggle to find workers who can perform specific, often tedious tasks, like data entry or software testing; some autistic people would be exceptionally good at those tasks. So in 2003, Sonne quit his job, mortgaged the family’s home, took a two-day accounting course and started a company called Specialisterne, Danish for “the specialists,” on the theory that, given the right environment, an autistic adult could not just hold down a job but also be the best person for it.

The Autism Advantage [NYT] (via Kottke) ]]> http://boingboing.net/2012/11/30/danish-entrepreneur-helps-peop.html/feed 23 http://boingboing.net/2012/11/15/how-experimental-design-can-cr.html http://boingboing.net/2012/11/15/how-experimental-design-can-cr.html#comments Thu, 15 Nov 2012 15:20:02 +0000 Maggie Koerth-Baker http://boingboing.net/?p=194146

Is coffee bad for you or good for you? Does acupuncture actually work, or does it produce a placebo effect? Do kids with autism have different microbes living in their intestines, or are their gut flora largely the same as neurotypical children? These are all good examples of topics that have produced wildly conflicting results from one study to another. (Side-note: This is why knowing what a single study says about something doesn't actually tell you much. And, frankly, when you have a lot of conflicting results on anything, it's really easy for somebody to pick the five that support a given hypothesis and not tell you about the 10 that don't.)

But why do conflicting results happen? One big factor is experimental design. Turns out, there's more than one way to study the same thing. How you set up an experiment can have a big effect on the outcome. And if lots of people are using different experimental designs, it becomes difficult to accurately compare their results. At the Wonderland blog, Emily Anthes has an excellent piece about this problem, using the aforementioned research on gut flora in kids with autism as an example.

For instance, in studies of autism and microbes, investigators must decide what kind of control group they want to use. Some scientists have chosen to compare the guts of autistic kids to those of their neurotypical siblings while others have used unrelated children as controls. This choice of control group can influence the strength of the effect that researchers find–or whether they find one at all.

Scientists also know that antibiotics can have profound and long-lasting effects on our microbiomes, so they agree on the need to exclude children from these studies who have taken antibiotics recently. But what’s recently? Within the last week? Month? Three months? Each investigator has to make his or her own call when designing a study.

Then there’s the matter of how researchers collect their bacterial samples. Are they studying fecal samples? Or taking samples from inside the intestines themselves? The bacterial communities may differ in samples taken from different places.

Read the full story at The Wonderland blog

This is kind of neat. Scientists conducted several psychological and neuro-imaging tests on Temple Grandin — the woman who has used her own autism as a model for designing better livestock control systems. What they found is that Grandin's brain looks different, structurally, from that of a neuro-typical person.

Grandin’s brain volume is significantly larger than that of three neurotypical controls matched on age, sex and handedness. Grandin’s lateral ventricles, the chambers that hold cerebrospinal fluid, are skewed in size so that the left one is much larger than the right. “It’s quite striking,” Cooperrider says. On both sides of her brain, Grandin has an abnormally large amygdala, a deep brain region that processes emotion. Her brain also shows differences in white matter, the bundles of nerve fibers that connect one region to another. The volume of white matter on the left side of her brain is higher than that in controls, the study found.

Grandin isn't the only person with autism to have had their brain scanned. But the differences that have been found aren't always consistent from one study to another. That, of course, makes some sense, given the fact that the word "autism" encompasses a whole spectrum of differences and disabilities which may or may not represent one single thing. But there have been several studies that did find differences similar to the ones found in Temple Grandin.

And here's the really interesting thing. Some scientists think that the common differences we do keep seeing — especially the bit about the larger brain volume — might be a clue that what eventually becomes autism actually begins in the womb. Here's a quick excerpt from a story that Carl Zimmer wrote about this stuff last spring:

When autistic children are born, Courchesne’s research suggests, they have an abundance of neurons jammed into an average-size brain. Over the first few years, the neurons get bigger and sprout thousands of branches to join other neurons. The extra neurons in the autistic brain probably send out a vast number of extra connections to other neurons. This overwiring may interfere with normal development of language and social behavior in young children. It would also explain the excess brain size seen in the MRI scans.

Read the story about Temple Grandin's brain

Read Carl Zimmer's story on structural differences in brains of people with autism

The New York Times Sunday Review had an article this week linking autism with the hygiene hypothesis. Written by Moises Velasquez-Manoff, the piece is part of the Times' opinion coverage, not reported news. It was also one of those sort of stories that comes across as highly persuasive ... until you start looking at the details. About halfway through reading it yesterday, it occurred to me that Velasquez-Manoff was making a lot of big statements—"perhaps 1/3 of autism, and very likely more, looks like a type of inflammatory disease", for example—without citing the sources to back those statements up.

That's easy to do when you're writing a relatively short article summarizing the contents of a much bigger book, as Velasquez-Manoff seems to be doing here. But the problems go deeper than that, according to biologist and science writer Emily Willingham. In a must-read blog post, she goes through the NYT piece and points out many flaws in argument and detail. The main problem, though, is a pretty simple one: Moises Velasquez-Manoff presents what seems to be a largely speculative hypothesis as sure-fire truth. To make that case as persuasive as it is, he leaves out lots of evidence that doesn't match up with his thesis.

First, he appears to describe autism as a “parallel epidemic” with autoimmune diseases, even though a careful review of the literature shows that there likely isn’t an “epidemic” of autism. I'm also having trouble finding any data to confirm an epidemic of autoimmune diseases (he provides no sourcing), although I find that incidence rates in general seem to go up with improvements in diagnostic tools, a scenario that is common with application of new technologies in many diseases and disorders. Without that parallel or even confirmation of either "epidemic," his carefully constructed, fragile “if that, then this” scenario suffers from that point on.

...Velasquez-Manoff then asks, “What has happened to the modern immune system?” and goes on to assert that the concepts underlying the “hygiene hypothesis” also underlie autism and correlations between autism and maternal autoimmune disorders or asthma. An “evolutionary answer,” he says, is that we are no longer sufficiently riddled with parasites and microbes (we actually still have our microbes), so our immune system, twiddling its presumably heroic thumbs, casts its roving eye elsewhere--i.e., on ourselves. See, people who still live with parasites, he says, “don’t suffer from inflammatory diseases as much as we do” (italics mine). “We,” I assume, being the clean people of the western world. No sources given, and that assertion does not dovetail with, for example, what we know about asthma rates in Latin America (really high) versus Western Europe (not so high), although in places where things like leprosy, parasitic worm infections that include river blindness, and nasty bacterial eye infections are high, type 1 diabetes is low. Raise your hand if you're willing to make that tradeoff. And then he says, “Autism also follows this pattern” and “seems to be less prevalent in the developing world.”

... when you’re dealing with intestinal parasites and their friends, you and your government may not really have the time to go around carefully diagnosing developmental disorders. I suffered through his unsourced dismissal of epidemiologists who say as much, and I just about had a coronary when he cited “at least one (unnamed) Western doctor” (the best kind, you know) who had found autism was “nearly nonexistent” in a Cambodian population “rife with parasites and acute infections.” Um… if, as Velasquez-Manoff seems to argue, maternal infection sets the stage for maternal immune dysfunction and presumably autism, how is it that a population rife with acute infections evades autism? He doesn’t ever name the “Western doctor,” but autism does exist in Cambodia, and while we’re at it, here are a few other things Cambodian children must endure because they’ve got this great “evolutionary”-based existence that 'protects' them against autism.

Willingham's basic point: There is an atmosphere of desperation and panic surrounding autism, which has lead some parents to try a range of risky interventions in the hopes of "curing" it. Given that, maybe it's irresponsible to claim that a hypothetical factor in autism is the absolute cause. Especially when the proposed treatment—intentional infection with parasitic whipworms—comes with its own downsides, including growth retardation in children, anemia, and even rectal prolapse.

Read the New York Times op-ed

Read the rest of Emily Willingham's response

At Discover's big-idea blog The Crux, Emily Willingham has a really interesting post about the prevalence of autism—is it actually increasing, or is this really about medical definitions and increased attention?

This is a topic we've talked about here on BoingBoing before, most recently back in March, when Steve Silberman offered some scientific evidence that suggests the ostensible increases in autism prevalence are "caused" by more accurate diagnosis.

But Willingham's piece adds a couple of new, interesting details to that still-emerging story. Being more aware of neurodiversity makes it look like there's more neurodiversity than there was before we were aware of it. And that was true even for the guy who invented the diagnosis of autism.

Leo Kanner first described autism almost 70 years ago, in 1944. Before that, autism didn’t exist as far as clinicians were concerned, and its official prevalence was, therefore, zero. There were, obviously, people with autism, but they were simply considered insane. Kanner himself noted in a 1965 paper that after he identified this entity, “almost overnight, the country seemed to be populated by a multitude of autistic children,” a trend that became noticeable in other countries, too, he said.

...by 1953, one autism expert was warning about the “abuse of the diagnosis of autism” because it “threatens to become a fashion.”

Read the rest of Willingham's piece, which includes a detailed look at several different studies that back up this view of autism with evidence. It looks like the majority of the "increase" in diagnoses can really be attributed to the process of diagnosis itself.

Science writer Steve Silberman does an amazing job covering neurodiversity and the Autism community, so I've been waiting to get his take on the recent Centers for Disease Control data that found the rate of autism prevalence in the United States to be 1 in 88.

That prevalence rate has been on an upward trend for a while, and whenever the new stats come out (these are based on data from 2008), it triggers a shockwave of hand-wringing coverage that treats these figures as if they must be based on an increase in actual incidence of autism, as opposed to changes in diagnostic criteria and methods. This matters, Silberman writes, because the science seems to back up the idea that what we're actually seeing is better diagnosis.

That theory is bolstered by two recent studies in South Korea and the United Kingdom, which suggest that autism prevalence has always been much higher than the estimated 1-in-10,000 when the diagnostic criteria were much more narrow and exclusionary. What’s changed now is that — in addition to the radical broadening of the spectrum following the introduction of diagnostic subcategories like Asperger’s syndrome and PDD-NOS – clinicians, teachers, and parents have gotten much better at recognizing autism, particularly in very young children. That’s actually good news, because by identifying a child early, parents can engage the supports, therapies, modes of learning, and assistive technology that can help a kid express the fullest potential of their unique atypical mind.

The real problem, according to Silberman, isn't a mysterious increase in the number of children with autism. Instead, the problem is how we, as a society, treat those children once they are no longer children.

Once that 1-in-88 kid grows to adulthood, our society offers little to enable him or her to live a healthy, secure, independent, and productive life in their own community. When kids on the spectrum graduate from high school, they and their families are often cut adrift — left to fend for themselves in the face of dwindling social services and even less than the meager level of accommodations available to those with other disabilities.

Meanwhile, the lion’s share of the money raised by star-studded “awareness” campaigns goes into researching potential genetic and environmental risk factors — not to improving the quality of life for the millions of autistic adults who are already here, struggling to get by.

Instead, what people with autism really need is to be a part of their communities. That means acceptance of difference is more important than awareness of difference. It also means that respect, support, and inclusion are more important than frantic attempts to "cure" children who might not have anything really wrong with them.

Read the rest of Steve Silberman's story on autism awareness, autism acceptance, and what people with autism say they really want.

From the beginning, their physical relationship was governed by the peculiar ways their respective brains processed sensory messages. Like many people with autism, each had uncomfortable sensitivities to types of touch or texture, and they came in different combinations.

Jack recoiled when Kirsten tried to give him a back massage, pushing deeply with her palms.

“Pet me,” he said, showing her, his fingers grazing her skin. But Kirsten, who had always hated the feeling of light touch, shrank from his caress.

“Only deep pressure,” she showed him, hugging herself.

He tried to kiss her, but it was hard for her to enjoy it, so obvious was his aversion. To him, kissing felt like what it was, he told her: mashing your face against someone else’s. Neither did he like the sweaty feeling of hand-holding, a sensation that seemed to dominate all others whenever they tried it.

“I’m sorry,” he said helplessly.

Navigating Love and Autism (Thanks, Scott!) ]]> http://boingboing.net/2011/12/26/romance-and-autistic-spectrum.html/feed 16 http://boingboing.net/2011/11/14/how-autistic-adults-can-contri.html http://boingboing.net/2011/11/14/how-autistic-adults-can-contri.html#comments Mon, 14 Nov 2011 19:19:21 +0000 Maggie Koerth-Baker http://boingboing.net/?p=129069 The downside to having a brain disorder: Your brain works differently than the majority of humans'. That can make it difficult to participate in society. It puts people at risk for poverty, abuse, and exclusion.

The benefit to having a brain disorder: Your brain works differently than the majority of humans'. That means that you could have something really valuable to contribute to society, if society will make a space for you.

Back in September, Amy Harmon wrote a great long feature for the New York Times Magazine about efforts to integrate autistic adults into the larger community. Now, the journal Nature has published an interesting commentary about how autistic adults can aide the cause of science as researchers. A commentary is basically like an editorial. In this case, a scientist combined several published research papers and his own experience to make a point. The Canadian Globe and Mail had this to say:

Over the past seven years, eight people with autism have been associated with Laurent Mottron’s research group, including Michelle Dawson, who has become a close collaborator. Some of the team members have exceptional memories, while others have an ability to see patterns in data, or other skills, and contribute because of their autism, not despite it, Dr. Mottron said.

... Individuals with autism tend to fare poorly on a standard IQ tests that require verbal instructions, but can do much better on non-verbal tests that measure reasoning and creative problem-solving. They are faster on these kinds of tests than normal volunteers and use a different part of the brain to solve the problems.

Other studies suggest people with autism are also better in a wide range of perception tasks, such as spotting a pattern in a distracting environment or mentally manipulating complex three-dimensional shapes.

...He said that people with autism in the workplace may need mediators to help settle situations that trigger anxiety, giving occasions when Ms. Dawson’s computer crashes as an example.

The new Nature paper is locked, unfortunately. But you can read a 2006 research paper by Laurent Mottron on the same subject.

Via Annie Murphy Paul

Some advocates of “neurodiversity” call this the next civil rights frontier: society, they say, stands to benefit from accepting people whose brains work differently. Opening the workplace to people with autism could harness their sometimes-unusual talents, advocates say, while decreasing costs to families and taxpayers for daytime aides and health care and housing subsidies, estimated at more than $1 million over an adult lifetime.

But such efforts carry their own costs. In this New York City suburb, the school district considered scrapping Ms. Stanton-Paule’s program almost as soon as it began, to save money on the extra teaching assistants who accompanied students to internships, the bank, the gym, the grocery store. Businesses weighed the risks of hiring autistic students who might not automatically grasp standard rules of workplace behavior.

Oblivious to such debates, many autistic high school students are facing the adult world with elevated expectations of their own. Justin, who relied on a one-on-one aide in school, had by age 17 declared his intention to be a “famous animator-illustrator.” He also dreamed of living in his own apartment, a goal he seemed especially devoted to when, say, his mother asked him to walk the dog.

(Image: A job at a bakery, Fred R. Conrad/The New York Times, used with permission) ]]> http://boingboing.net/2011/09/18/integrating-autistic-people-into-the-community.html/feed 58