Thursday, November 19, 2015

Re: Autistic boy, 11, kills himself

Kit Mead


Re: Autistic boy, 11, kills himself

I phrase it that way. I don't phrase it the way the article did. Blaming the autism and ADHD for suicide. This was a boy who befriended a locust in a tree. His mother said he felt like the adults at his school didn't care and could not make connections in his class. Had a gift with animals.


Isolated and miserable, I managed to find refuge in certain places. The art room, where the art teacher encouraged me to explore with sharpies and gel pens and acrylic paints. The debate room. My 10th grade English teacher's classroom. The scene shop, where I would frenetically sweep and clean the entire area after school.

Unlike Shane Laycock, I had supportive adults in my high school. I don't know how, considering the story told by so many of us of being shunned by even the adults who are supposed to care. I don't know what would have happened without them.


It was never autism's fault.

In middle school, I arrived with a set of liberal opinions from one of my parental units at a private school and set the school upside down. At a certain point, curiosity about the new student turned into vitriol. It was never autism's fault. The way they treated me created a small, scared, desperate teenager by the time I hit high school. Failure to understand difference is at fault.


I spent most of my time in trees, befriending neighborhood cats, playing with my gerbils, reading, or lost in my head. I once climbed a 40-foot-tree. I lived in fantasy worlds.

Biking is still my outlet, speeding up and down hills, feeling the wind in my face.


He said he felt like the adults at his school they didn't care. This is the experience of so many like us, shoved aside and written off and turned away. Not me (in terms of adults), but so many of us.

How can we make sure that people start to care? That people care about people like us? It was never autism's fault. It is a society that teaches difference is failure, that autism is tragedy, perpetuating the constant isolation of autistic people and other people with disabilities.

And when talking about this...

When talking about this...

Talk about a boy who walked barefoot and befriended locusts...

Talk about a society which chose to isolate him, talk about a society that failed to accept him. Do not blame him or disability.

Yes, in a perfect, non-ableist world, there would still be forms of disability. Certain things are disabling. But to turn away from the role society plays in perpetuating isolation would be negligence.


This post was previously published at

Monday, November 16, 2015

Why The New 1 in 45 Autism Numbers Shouldn't Surprise You

Shannon Des Roches Rosa

We've said it before, we'll say it again: There Is No Autism Epidemic. Not even after US estimates for autism prevalence recently rose to 1 in 45.

How do we know there's no autism epidemic? Two reasons:
  1. A comprehensive survey of autism prevalence in Korea estimated a rate of 1 in 39, as reported in 2011. There's no reason US rates should be much different, so the new numbers are likely portraying reality more accurately, rather than indicating reality is changing.
  2. Researchers have been saying for years that autism's prevalence has mostly risen in response to changes in diagnostic criteria, rather than due to environmental triggers or other causation ideas.
The role of changing diagnostic criteria in rising autism rates is particularly relevant right now, given that theme's prominence in Steve Silberman's award-winning, current bestseller NeuroTribes. Silberman devotes a sizable section of the book to describing how British researcher Lorna Wing helped revamp autism diagnostic criteria in the 1980s. When Dr. Wing widened those criteria to include the full spectrum of autistic experiences, she fully expected autism prevalence to rise dramatically as a reuslt. As Silberman writes in a related article at BBC Future:
"In fact, the primary contributor to the dramatic spike in autism prevalence in recent decades is the fact that a broad range of children, teenagers, and adults on the spectrum are able to get diagnosed at all. Until the 1980s, there was no “autism spectrum” as a diagnostic category."
So what lies behind the current uptick in estimated US autism prevalence? As science writer Emily Willingham reports, it has to do with a tweak in the way interviewers questioned parents about their children. That's it. Once again, there's a simple explanation, rather than a concealed smoking gun. Per Willingham:
"Not even the most die-hard causation theorist could argue that in a single year or handful of years, something environmental, like vaccines, caused a near-doubling of autism prevalence in children ages 3 to 17 years."
Autism prevalence rates will hopefully continue to rise, because -- ideally -- higher rates would indicate better estimates within populations considered chronically underdiagnosed: girls, children of color, and children from low socioeconomic backgrounds. (While autistic adults are also underdiagnosed for a variety of reasons, the 1 in 45 rate is from a parent survey about autistic children.)

All this evidence refuting an autism "epidemic" is (or should be) common knowledge, to those who follow mainstream autism research even casually. But that hasn't stopped some people and organizations from publicly complaining that these numbers are irrefutable proof of a "catastrophe."

A charitable perspective on such denialism is that the doomsayers in question are concerned about the increase in actual numbers of autistic kids and adults who need and aren't (or won't be) getting enough support, due to population increase combined with prevalence, and divided by insufficient funding. If their motives are indeed humanitarian, then I'd like to remind those folks that is it possible to lobby for needed funding and supports without worsening the negative public perception of the very people those organizations and their leaders are supposed to be championing.

As Silberman said to Terry Gross on NPR's Fresh Air, regarding the harm of an "epidemic" mindset and cure-focused approach to autism, and how that negative misinformation disproportionately affects how autism funding is directed:
"What I say is that at least some of that money should be redirected to things like helping autistic adults live more satisfying, healthier and safer lives, or helping families get the services they need or helping families get a quicker diagnosis for their kids."
Refuting the idea of an autism "epidemic" and fighting like hell to help get autistic people the supports they need and deserve shouldn't be mutually exclusive efforts. Now that you know what the new 1 in 45 numbers represent, please do speak up when anyone uses those new numbers for misguided or hurtful purposes.


[Edit: A previous version of this article attributed the 1 in 45 numbers to a CDC survey. They are in fact from a National Health Interview Survey (NHIS).]