The behavior that wasn't

When your ASD kid starts prodding around his rear constantly while on the toilet, you — like us — might think it's a new tic or stim. You'll think, "Obsessive noodling back there might be a sign! We must fix this, and quick!" That's how we felt the past several weeks when C started his backyard explorations with great vigor and persistence. I mean, it was getting gross. And worrisome.

Then, the other night, my wife looked at the toilet paper and saw them. THEM! Tiny pinworms, a parasite so common that the first four pharmacies she called were sold out of the over-the-counter remedy.

No wonder he was constantly fiddling around with himself: he was scratching an insatiable itch. And what did we do? We did what you do when faced with a challenging new behavior: we offered quiet reminders and gentle redirection. No shame, no guilt, no punishment. But no real help, either.

And now we're kicking ourselves. We were pathologizing a behavior instead of looking for a much simpler, more logical explanation.

This is the trap you can fall into: thinking everything is an Issue, something to be fixed or corrected. (Of course, it would have helped if he could have told us what he was feeling, but that's another post).

Anyway, we have a new motto: not everything’s a behavior — sometimes it’s worms!

As for the the remedy: it works. One dose and the digging stopped.

What I’ve been reading — May 2015

Here are some things I’ve read this past month that I found helpful, informative, or inspiring. If you like this and find it helpful, please share with others. Thanks! C at the museum

Opinions and insights

#AutismAcceptance: Finding Freedom in Autistic Parenting "In learning to understand and accept the many differences that come with being an Autistic person and knowing what it was like trying to force myself into a mold I couldn’t possibly fit, I was able to be a better Mom." Read more

Feeling judged as a parent? "Canadian parenting expert Ann Douglas spoke with BLOOM about her new book Parenting Through the Storm—a collection of strategies for raising children with mental health, behaviour or learning challenges, and maintaining your own health and happiness in the process." Read more

Should You Worry about Video Game Addiction in a Child with Autism? "Children with autism are drawn to video games for their stunning visuals, predictable play expectations, user-controlled pace of the game, and opportunity to avoid social judgment." Read more

Running Around Outside Can Help Improve Executive Functions "Active play, defined as play that has physical movement as a core component, includes organized sports, a walk in the woods, playing tag, or body surfing in the ocean, and can improve skills like organization, planning and focus." Read more

What should define autism: deficits or abilities? A new approach to thinking about the diagnosis. Read more

Listening to parents can help docs see early autism signs "Children with autism are typically diagnosed at about age 4, when social deficits and other symptoms set them apart from their classmates. But some children show subtle signs of the disorder as early as 6 months of age. Recognizing these signs is important: Mounting evidence suggests that early intervention can improve social and communication skills in children with autism." Read more

Learn Why There is No Real Autism Epidemic More debunking of the myth of an "autism epidemic," with statistics. Read more

News

Feds Rethink Stance On Speech Devices "Speech may soon be federally recognized as more than just what happens in a face-to-face conversation after thousands of people with disabilities and their advocates said that communications by phone, text and email are also important." Read more

French country home designed and built for patients with autism. Read more

Chair that Blue Valley students helped create for kids with autism may be headed to market Read more

Adults with autism are at risk for host of health problems "Adults with autism are at an increased risk for diabetes, depression and a number of other health problems, according to a large survey of electronic health records published 24 April in Autism." Read more

UBC students develop wearable device that monitors anxiety in autistic children Very interested in this: "A wearable device developed by students at the University of British Columbia shows promise in preventing meltdowns in children with autism." Read more

Science

Questions for Eric London: Alternative diagnoses for autism There is so much in this article I like and agree with. Summarizing: "Listing detailed symptoms rather than assigning a single diagnostic label may be a better way to understand neurodevelopmental disorders." Read more

Questions for Miller, Kaplan: New neurons' role in autism "Protein production is known to go awry in some forms of autism, and researchers are beginning to home in on the molecular players involved." Read more

For adults with autism, few good choices for treatments "Only one type of intervention improves the quality of life of adults on the spectrum and helps them establish social relationships, concludes a sobering report released earlier this month by the National Autism Center, a Massachusetts-based nonprofit organization." Read more

Better behavioral tests may save trials of autism treatments "The sooner we merge the best of what biology and behavior can offer, the sooner we will achieve our ultimate goal of safe, effective treatments for the full spectrum of autism symptoms." Read more

Rare regressive disorder is not autism, new findings suggest Read more

Sue Doku

Sue Doku artwork  

Warning: shameless self-promotion ahead.

I love sudoku: the strategy is simple, but game play can be challenging. During stressful times (we know about those, right?), the focus sudoku requires helps take my mind off things.

Most sudoku apps, however, are ugly, with distracting graphics. So my friend Jamie and I recently launched Sue Doku for iPhone and iPad.

Sue Doku features:

  • Simple, minimal design
  • Thousands of beautiful game layouts
  • Four challenging levels
  • Light and dark modes
  • Helpful hints
  • Note mode
  • Stat tracker
  • Optional floating keypad (iPad)

Best of all, it's just $0.99 on the App Store. If you don't know how to play sudoku, check out the rules on our site.

I hope you'll give Sue Doku a shot. If you like it, please rate it and write a short review; better yet, tell a friend!

Get Sue Doku on the iTunes store

Thanks for reading.

What I've been reading — April 2015

I'm very excited about this month's installment: there are some provocative opinions and insights, helpful resources, a technology story, some informative science updates, news, and a few articles about ADHD.  If you like this and find it helpful, please share with others. Thanks!

Opinions and insights

The Best Way I Can Describe What It's Like to Have Autism "There is no doubt that autism makes my life difficult, but it also makes my life beautiful. When everything is more intense, then the everyday, the mundane, the typical, the normal… those things become outstanding." Read more

Normalised, no thanks. "Recently I had the experience of being kicked out of a Facebook biomedical page...Because I spoke up when a mother of an autistic child said that people are talking about Autism like its a gift, it's the new thing, when children with autism actually need to be normalised." Read more

If you are only raising neuro-typical children, you might not know what I’m about to share. "If we consciously leave behind the grass is greener gazing, we are free to be just as we are. If we remember that there are many different ways to do family life, we can let go of our expectations to do it the same as others do. If we are present enough to feel the joy in simplicity - in baking biscuits together, building with Lego as a family, staring at caterpillars and sitting next to each other while we all play with iPads - then we can accept our life as it is." Read more (Google cache)

Helpful resources

Tips for the Future Care of Disabled Family Members - NYTimes.com Extremely important — and useful. Read more

How to Explain Autism to People Helpful tips for sometimes awkward conversations. Read more

"my child has autism" "oh..." What not to say. "I’m always happy to tell people more about my sons autism...I appreciate it when people ask questions! Ask me anything and I’ll do my best to answer or point you in the right direction." Read more

When Aspergers Syndrome goes undiagnosed. "The populations that are most often misdiagnosed or undiagnosed are academically gifted children. Those who are gifted can fly under the radar because they may easily learn appropriate behaviors that can mask symptoms of autism." Read more

Technology

Autism researchers eager to use Apple's ResearchKit "A new software-development tool from Apple released to developers on Tuesday offers a shortcut to these apps. Called ResearchKit, it helps researchers create apps by providing templates for components such as mobile surveys and behavioral tests that harness the phone’s sensors." Read more

Science

Genes dwarf environment in autism's origins, study says "The genetic makeup of an individual plays much a bigger role than environmental factors in whether he or she develops autism, according to one of the largest twin studies to date. The findings, published 4 March in JAMA Psychiatry, suggest that genes confer up to 95 percent of the risk for autism — nearly double that of previous estimates." Read more

Standard tests underestimate nonverbal children with autism "Nonverbal doesn’t mean incapable. A pilot study of children with autism who have low or no verbal skills suggests that the right intelligence tests can reveal their hidden potential...when the scientists used a picture-based test called the Raven’s Colored Progressive Matrices, 65 percent of the children scored in the normal range. Ten percent ranked in the 90th percentile." Read more

Another large study shows no link between autism and the MMR vaccine. "...kids who got the MMR vaccine were not more likely to be autistic. It doesn’t matter if their older siblings were autistic or not. So, 'high risk' or not, the MMR vaccine doesn’t increase autism risk." Read more

News

(UN Secretary General) Ban launches ‘call to action’ inviting commitments from businesses to employ people with autism "At a special event at United Nations Headquarters to mark World Autism Awareness Day, Secretary-General Ban Ki-moon called today for greater access and work opportunities for persons with autism, saying that while much progress had been made, much more work was needed." Read more

A Swim Team for Teens With Autism Wonderful short documentary: "Team sports are a right of passage for many children, but kids with disabilities often can’t participate." Read more

ADHD

Love: The Most Powerful Medicine for ADHD "Now, let’s be clear. Treatment for ADHD matters a lot. Scientifically proven treatments can (and should) help your child. From behavior therapy to medication to counseling, there are many, many good options. But love is a key part of any treatment plan. Children who are loved, and who know they are loved, are getting the most powerful medicine for ADHD." Read more

ADHD Is Real Steven Novella takes on an op-ed piece in The Blaze that asserts ADHD is not real. "There is a clear consensus based upon robust scientific evidence accumulated over decades that ADHD is a real disorder. Denying the reality of ADHD, in my opinion, is just like any other science denial, and employs the same suite of methods and fallacies in order to do so." Read more