What I’ve been reading — June 2015

Opinions and Insights

Why Do Friendships Fade for So Many Autism Spectrum Parents? This one really hit home. Read more

Father’s Days. A cartoonist’s journey into first-time (and special needs) fatherhood. Beautiful. Watch it

Parents New to Autism: Don't Fall for Pseudoscience like DAN! or MAPS. The title says it all. Read more

Questions for Ari Ne'eman: Partnering with participants "We have an opportunity to re-envision the quality of our autism conversation. It’s a chance for us to build a more inclusive vision, one that acknowledges that autistic children will grow into autistic adults. If we do our jobs right, that doesn’t have to be a bad thing." Read more

We Are All Part of One Spectrum. (HT to Emily Brooks.) "...if the Autism Rights Movement’s history will be told as a successful one, it will be because all voices were heard, including mine, including the voices of the ones you don’t believe have a lot to say." Read more

Science

Large Swedish study casts doubt on autism 'epidemic' "'The authors present probably the best data available on whether [autism] symptoms have increased over time,' says David Mandell, associate professor of psychiatry and pediatrics at the University of Pennsylvania, who was not involved in the study. 'Their findings suggest that they have not.'” Read more

Body clock genes may set pace for sleep issues in autism. "People with autism are twice as likely to carry alterations in genes that regulate the circadian clock, or the body’s sleep-wake cycle, as those without the disorder. The findings, published 6 May in Brain and Development, may help to explain why most children with autism have troubled sleep." Read more

News

When 2 Teens Found a Friendship No One Believed They Could Have "I don’t care that’s its taken 17 years for Kreed to find a friend because this friendship was worth the wait." Inspiring. Read more

Daniel Smith, proprietor of an MMS company, convicted " If this weren’t being used on disabled children, I would consider hiding behind a church ( a fake church in my opinion) as being reprehensible. But that act pales in comparison to the harm caused to individuals." Read more

Young man with autism is now a world renowned artist Read more

Who Decides Where Autistic Adults Live? Sometimes the best of intentions can lead to disastrous results. Read more

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!

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

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

What I’ve been reading – December 2014

Note: Because of the holidays, my December "What I've been reading" post is a little earlier than usuual. 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!

Opinions and insights

Ability is more than the sum of savant skills "Autism is commonly conceived of only as a set of serious deficits, except for when it confers spectacular, miraculous-seeming, but isolated savant abilities or splinter skills. This is a problem." Read more

We’re Doing Autism Research All Wrong | MIT Technology Review "We’re sinking millions into the search for a 'cure,' even though we now know that autism is not a disease but rather a neurological difference, one that cripples some of us while bringing a few others extraordinary gifts." Read more

When I Slowed Down and Actually Listened to My Brother With Autism "I’m betting you have a loved one who you rush. Whether it’s yourself, your child, your sibling, your spouse…maybe you’re rushing language, skills, getting out the door on time. Don’t beat yourself up over it, but do go ahead and slow down." Read more

What’s MSSNG in Autism? "...this effort won’t help any of the autistic children today. Benefits may flow from the research one day, but the beneficiaries will be tomorrow’s children. Today’s children will be long grown up, for better of for worse." Read more

The Letter I Would Have Written for My Parents When I Was Still Nonverbal "I hope for any parent who reads this letter — coming from a now 26-year-old adult on the autism spectrum — that you never give up on your loved ones. The autism spectrum is wide and everyone’s journey is going to be slightly different. Become an advocate because by doing what you’re doing now, you not only give hope to your loved ones but you give hope to the autism community." Read more

The Hardest Part of Autism "And that is now the hardest thing about autism – my inability to shield him forever from judgment, ridicule and mean children and adults." Read more

On Autism Speaks' Suzanne Wright, the frustrated savior From the always excellent Emily Willingham: "If you admit that others can understand the people for whom you claim to speak, then you cannot position yourself as the savior. The Wrights founded Autism Speaks to save their grandson. When others build a bridge to understanding and acceptance, a savior is no longer needed. The raison d'être of their entire organization crumbles if people start building bridges past and through and around them between non-autistics and autistics." Read more

Science and news

SD (San Diego) Man With Autism Defies Odds, Graduates Law School. A lovely, hopeful story. Read more

Google Teams Up With A Controversial Research Group To Figure Out Autism "Google and an autism research group have launched a new program to help scientists study autism and come up with new treatment options." Read more

Gauging intelligence in autism over time "Ultimately, however, we should aim to be less reliant on tests designed for young children, as the activities used to measure IQ in toddlers and preschoolers are less relevant for adolescents and adults, and may fail to capture their true cognitive abilities." Read more

Risperidone has no effect on core symptoms of autism "Results from a ten-year study, published 19 November in the Journal of Child and Adolescent Psychopharmacology, bolster the idea that risperidone has no effect on the core symptoms of autism." Read more

New method helps resolve conflicting autism diagnoses "To diagnose autism, clinicians often rely on two standardized diagnostic tests: the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R). But the results of these two tests do not always jibe...A new method, described 28 October in the Journal of Autism and Developmental Disorders, aims to fill this void." Read more

What I’ve been reading – November 2014

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!

Divisions in the autism community. The tragic murder of little London McCabe this month has sparked a lot of discussion about how autism is represented in the media and elsewhere. In a Facebook post which argues that divisiveness in the autism community might actually be a good thing, the always excellent Invisible Strings writes, "Today, thanks in large part to the internet and social media, autistics are contributing their own perspectives. Turns out: we have a slightly different view of things. We don't want to be hidden away or eradicated. We want respect.” He goes on to write, "Negative views about autism are the norm...and for too long, they were the only view. Division means that new voices are being heard. This is good.” Read more.

Ido in Autismland: My Speech at the Autism Society Self Determination Conference. Ido shares a recent speech he gave. "I warn you about one thing though. A consequence of teaching autistic people to type is that we have opinions and we have determination. Once we can express them we will demand a voice in our own futures.” Read more

Jerry Seinfeld and Autism. This month, Jerry Seinfeld said he has come to believe he is somewhere on the autism spectrum. Reactions to his comments ranged from supportive to outraged. John Elder Robinson, author of Look Me in the Eye, offered an interesting point of view, including this: "The 'my autism is worse than yours' is a counterproductive and destructive way of thinking. Look at depression and Robin Williams. He looked pretty successful and functional a few month back, didn’t he? But now he’s dead. None of us can know the struggles of another. There is no better and worse in autism’s affect.” Read more

Therapy for autism may alter brain activity, behavior. A preliminary study shows promise for Pivotal Response Therapy. "Following the treatment, seven children with autism showed enhanced activity in the medial prefrontal cortex — a brain region known to be involved in social cognition. By contrast, six untreated children with autism showed a slight decrease in brain activity in this region.” We’ve had positive experiences with this form of therapy for C. Note: this study is preliminary and small, and should be taken with a grain of salt until more studies and reviews can support its thesis. Read more

Rise in autism fueled mainly by diagnostic changes. Yet another study, this time out of Denmark, which suggests there is not really an “epidemic” of autism. This particular study, "published 3 November in JAMA Pediatrics suggests that up to 60 percent of the increase in autism prevalence in Denmark between 1980 and 2011 stemmed from diagnostic changes in that country.” The other 40% was attributed to greater general autism awareness. As for that so-called epidemic, the article notes that “…most people who talk about an ‘epidemic’ of autism in the U.S. are referring to a chart that maps the disorder’s dramatic rise after 1985. But many of them may not know that autism didn’t exist as a diagnosis until 1980. Before that, it was called childhood schizophrenia.” Read more

JRC Survivor Speaks Out (Part 1 of 4) "Hi, my name is Jennifer. I am diagnosed on the Autism Spectrum. Like so many of us, I have endured restraint, seclusion and aversives throughout my life, including seven years at the Judge Rotenberg Center. This is some of my story.” A four-part essay on the horrors inflicted to this date upon autistic individuals at the JRC. Start reading (part 1)

Naturopathy vs. Science: Autism Naturopaths are hopping on the "cure autism" bandwagon, supporting all manner of unproven, often dangerous and painful treatments. Read more