What I’ve been reading — June 2015

Walking in the rain

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! 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

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 — March 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

Respectfully Connected: Don't Say Rainbows. Fantastic. "There are few misconceptions about autism acceptance and neurodiversity that consistently get repeated by parents of autistic children, to the point that people take them as fact. What follows are some myths I've been trying to deconstruct in the recent past..." Read more

My Speech at the Profectum Conference "The autism I have is not a language processing problem or a lack of understanding anything. I want this point crystal clear. My mind is fully, totally intact. In fact, my experience is that most nonverbal autistic people have intact minds too...Here is your challenge. Stop looking at our weird movements, blank faces, lack of speech, trouble handwriting, poor self control, and on and on, as proof of intellectual delay." Read more

Autism Discussion: building self-acceptance for spectrum teens "... I asked a few autistic adults what helped or would have helped them navigate those notoriously challenging teen years. I also requested input from parents who write frequently about radical self-acceptance for their spectrum children. Here are their responses." Read more

An insider’s view of ‘Special Interests’ "Through Special Interests, you might find a way in to your child’s internal world. A way to share their enthusiasm and a safe harbor to gently lead them to when the world gets too much." Read more

a friend illegible (stories from the autism spectrum) "Early in life, I noticed that playing alone seemed to meet all of my recreational needs. It was engaging, it made sense. I could invent characters to take the place of friends. And yet, at the same time, I felt an intense need to be with people." Read more

Was autism ever a first advocacy priority for those promoting the idea that vaccines cause autism? Basically, no. Read more

News

The Parents Who Give Their Children Bleach Enemas to 'Cure' Them of Autism "O'Leary (autism advocate) has no sympathy for anyone giving their children chlorine dioxide and painted a bleak portrait of life in an MMS household, one that sifting though the CDautism.org forums at length only reinforced: a life of tightly restricted diets, constant oral dosing with chlorine dioxide, and regular, invasive, chlorine dioxide enemas. A life of pain." Read more

Soldiers with autism give army rare view into intel, and disorder How the IDF (Israel Defense Forces) is integrating "...autistic teens and young adults into one of the IDF Military Intelligence Directorate’s more crucial functions: aerial photography interpretation." Read more

Keeping autistic readers interested. “'Interest-based reading' — or providing autistic students with reading material based on their particular interests — allows children from fourth to eighth grades with ASD improve their reading comprehension.' Read more

Science

Sign language study solves autism's pronoun mystery. "Instead, the researchers say, the misuse or avoidance of personal pronouns stems from an inability to distinguish between oneself and others — a fundamental confusion in the children's sense of 'self.'" Read more

You and I — "A new fMRI study published in Brain in July reports that connectivity between two brain regions involved in self-awareness is greatly reduced in people with autism when they engage in deictic shifting." Read more

Flair for faces forecasts future autism severity A recent but small study suggests that "...problems with facial recognition in childhood predict autism severity. They also raise the intriguing possibility that impaired facial recognition contributes to the social deficits seen in autism. If this theory pans out, it may be possible to improve social skills in people with the disorder by giving them tools to better recognize faces." Read more

Symptoms in children with autism follow diverse paths "Within months of being diagnosed with autism, preschoolers with the disorder may already be on distinct trajectories, according to a study published 28 January in JAMA Psychiatry. The findings suggest that the severity of autism symptoms does not track with the ability to function in daily life...For example, a child whose social deficits worsen over time may at the same time show improvements in intelligence." Read more

Wearable sensors aim to capture autism in action As we see health trackers become more ubiquitous, it's fascinating to see how they're being used, adapted, or completely re-imagined to help people with autism. Read more

Questions for Deborah Fein: Defining 'optimal outcome.' "A substantial proportion of children with autism who later lost their diagnoses received a one-on-one intervention called Applied Behavior Analysis." Read more

What I’ve been reading — February 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, insights and news

We aren’t your scapegoats. End of story. One of the very best pieces I’ve read against those who use autism as a scare tactic in their war against vaccines. "Which to me was actually far more offensive on its face than the persistence of fear that vaccines have anything to do with autism. Because that’s not just an irrational fear; that statement expresses a conviction that it’s okay to choose a group of people and use our existence as a scare tactic for your own ends. That if a group of people is presumed sufficiently voiceless, you can strip them of agency and the right to self-representation and use them to promulgate a falsehood that’s convenient to your own beliefs just because it’s easy." Read more

We Are Like Your Child: Do You Believe In Your Children? "If you think I am not like your child, I ask you: do you believe in your child? Do you leave the possibilities open? Do you nurture your child so that he feels safe to grow into the adult he is germinating inside himself?" Read more

5 New Year’s Resolutions for Autism Speaks. An excellent rundown of how AutismSpeaks can do things differently — and better — in 2015. Read more

Non Verbal Autism. "Especially damning are the assumptions that my intelligence is low because of my thwarted attempts to respond the way others expect; with verbal words. I can remember a time when a person said to Mom that I have a very low IQ of 40, and I wanted to scream, NO! But I couldn’t. It was horrible not to be able to defend myself.” Read more

Questions for David Mandell: Curbing autism's costs. "Last year, Mandell laid out the costs of having autism, from lost productivity to pricey hospital stays1. He found that it is the fourth most expensive condition in the U.S., trailing behind only trauma, cancer and cardiovascular disease. What’s more, data from Medicaid claims suggest that available autism therapies do little to lower these costs." Read more

Autism’s First Child. I first read this story in the Atlantic before C had an autism diagnosis, and I found it then, as now, touching and (surprisingly) reassuring. Read more

Waukesha police officer helps calm woman with autism with kindness. When a police officer got a call about an unruly customer at a Target, officer "Bukouras quickly realized that the woman just wanted to buy a doll. He also learned she has severe autism and did not understand the concept of money. He calmed her down, and when he found out the caregiver didn't have money to pay for the doll, he bought it himself and gave it to her.” More stories like this, please. Read more

Mom starts scout troop for kids with autism. Great story. Read more

When Children With Autism Grow Up. This was very, very hard to read (emotionally), but I’m glad I did. “...it’s not Scooter’s disability that isolates him; society does." Read more

Movie review: Who Killed Alex Spourdalakis. "Alex deserved better in life. He deserved medical care, be it psychiatric, standard medical or both, to bring him back to the happy person he was before his crisis. But Alex also deserves better in death. He deserves that his life and death not be used as a tool to promote Andrew Wakefield’s poorly supported one-size-fits-all approach to autism." Read more

A curious experience. A review of the theatrical adaptation of The Curious Incident of the Dog in the Night-Time, which I was fortunate enough to see last month. Read more

Science

Multiple diagnoses. “In fact, 95 percent of these children (with autism) have at least three other psychiatric disorders, and 74 percent have five or more, according to a study in the Journal of Autism and Developmental Disorders." Read more

The connections in autistic brains are idiosyncratic and individualized. Research has been contradictory: are autistic brains over- or under-connected? New research may have reconciled the discrepancy: "Researchers at the Weizmann Institute of Science in Israel determined that brain regions with high interconnectivity in controls have reduced connectivity in ASD, and regions with lower connectivity in controls have elevated connectivity in people with ASD.” Read more

Adults with autism feel frequent, lingering anxiety. "Previous studies have linked a high intelligence quotient to anxiety in children with autism. But little is known about anxiety in adults with the disorder.” A new study of 20 adults considers just that. Read more

Autism can mask anxiety symptoms. "Anxiety appears to be common in individuals with autism. In fact, a study of our inpatient unit published in Decemberfound that 63 percent met criteria for an anxiety disorder, such as social phobia or obsessive compulsive disorder. This is in line with results from previous studies.” Read more

Research: Autistic Savants | Autism Research Institute. "The estimated prevalence of savant abilities in autism is 10%, whereas the prevalence in the non-autistic population, including those with mental retardation, is less than 1%.” Read more

Noisy patterns of connectivity mark autism brains. Fascinating, and makes a lot of sense (IMHO). "A new study may have solved a decade-old debate about whether the brains of people with autism are more or less connected than those of controls: They’re both, depending on where in the brain you look." Read more

The research linking autism to vaccines is even more bogus than you think. "Here are five reasons — and many links to further reading — that should remind you just how terrible his (Andrew Wakefield's) research was." Read more

Study downgrades autism gene's effects to rare glitches. "Some earlier studies suggested a strong link to a group of Amish children who inherited mutations in both copies of the CNTNAP2 gene have severe epilepsy and autism.” New research suggests that link may not be as strong as once thought. Read more

Examination of the Safety of Pediatric Vaccine Schedules in a Non-Human Primate Model: Assessments of Neurodevelopment, Learning, and Social Behavior. A previous, small study by funded by an antivaccine consortium suggested a link between MMR and autism-like symptoms in certain monkey species. A larger study, funded by the same group and conducted by the same reserachers, suggests there is, in fact, no such link. Will the antivax groups retract? Doubtful. Read more