Science + Autism Reading

When C first got his lung disease diagnosis, and then his autism diagnosis, I scoured the web looking for reliable sources of information and insight. Below are a few of my favorite science + autism websites, blogs and tweeps. What are yours?

  • Emily Willingham is a scientist and writer who has a son on the spectrum. She explores — and often rips apart — the latest in autism pseudoscience on her blog, her Forbes column, and on Twitter.
  • Cracking the Enigma, a blog by research fellow Dr. Jon Brock, focuses on "cognitive and neural mechanisms involved in developmental disorders including autism, Williams syndrome, and Down syndrome." He also has a Twitter feed.
  • Left Brain / Right Brain is an excellent autism-focused science website.
  • Autism News Beat is a blog by the father of a 16-year-old boy with autism. The writer's goal is to help journalists write about science, and autism in particular.
  • The Autism Science Foundation is a non-profit organization dedicated to helping researchers and scientists fund and publicize their work. It's a great place to keep up with the latest in science-based autism research.
  • And, on a lighter and non-science-related note, my favorite Dad blogger.

October 2012 Links

I'd hoped to post these before October was over, but Hurricane Sandy slowed me down a bit. Nonetheless, here are some interesting links I've run across in the past month.

In other news, we've received final legal approval for our autism app designed to help parents understand signs and symptoms. Hopefully it will be available in the iTunes store later this month (for free, of course).

Concerns About the DSM-V

dsm As always, Emily Willingham does a great job illuminating concerns about proposed changes to the DSM's criteria for diagnosing autism. With the goal of reducing false positives (people diagnosed with autism who don't actually have autism), the new criteria might actually exclude a not-insignificant number of people who actually do have autism. This begs the question, which is worse: false positives or false negatives?

I've read conflicting accounts as to the potential impact the new criteria might have on diagnosing autism, but one thing is clear: there's a lot of confusion. And where there is confusion, there are bound to be problems.

Wouldn't it be better to treat someone who has issues that may or may not add up to autism, rather than deny treatment to someone simply because the new criteria are vague and open to broad interpretation?

In her conclusion, Willingham makes a fascinating proposition: perhaps the goal of trying to affix a label or specific diagnosis is in itself problematic.

In her words, "We all have gaps that need mitigating. If we addressed specific gaps instead of wholesale labels, we’d all overlap with each other in some way, for anxiety, attention deficits, compulsive or obsessive or impulsive behaviors, depression, mania, intellectual disability or learning differences in specific areas, or addiction–and it would be a lot harder to stigmatize what we have in common, regardless of our overall neurobiology. Furthermore, we wouldn’t have to worry about applying lists of criteria that result in the wrong labels or therapies for the wrong people, or–worse in my mind–overlooking entirely the people who need help and support."

Well put. Read her full post here.

Are You Ready for Children?

In an excellent and provocative post entitled, "Wondering if you should have children or not?" Emily Willingham attempts to help prospective parents — primarily prospective mothers — answer that question by asking them a question in return.

I'll summarize what I think is the thrust of her post: While the chances are your child will be fine, a not insignificant number of parents will have a child with a lifelong disability, and there is no way you can control that. If you're not ready to commit every last bit of energy and time to that endeavor on the off-chance that this will be your future, don't have children.

In her words: "Parents are an accident or a developmental milestone or a virus away from having their lives change in ways no one can predict." She continues, "It's not a question of 'If I become a parent, will I still be able to work?' It's a question of, 'If I become a parent, am I prepared to be nothing but a parent all day, every day, if a sudden change, infinitely unpredictable, requires it?'"

Blunt, uncompromising, perhaps unpleasant, but true.

I don't know how I would have answered her question before becoming a parent. I think I knew it would be hard, largely because of my own experiences growing up (e.g., losing two brothers, etc.). All I know is that now that I'm in this life — like most parents in the same situation — I'm doing my level best.

That said, the fact is that the majority of this burden falls to my wife. I try to be the best, most engaged father I can. And still…her shoulders carry more of this weight.