The Child Mind BlogBrainstorm
New Voices on Babble's Autism Bloggers List
April 16, 2013 Beth Arky
For the third April running, the parenting website Babble is doing its part to raise autism awareness—and acceptance—with its Top 30 Autism Spectrum Blogs of 2013. The bloggers run the gamut: neurotypical parents of autistic kids, autistic parents of autistic kids, and autistic adults who aren't parents but provide a window into what it's like to live in a world geared to the typically "wired." All offer insight, support and invaluable practical advice to parents of autistic kids and, increasingly, children, teens, and young adults on the spectrum.
About a third of the bloggers on this year's list are on the spectrum, about the same number as last year. However, Joslyn Gray, who wrote the Babble story and was one of the panelists who chose the list, says, "I think overall, we are seeing more neurotypical people reading blogs by autistic writers, which is great.
"For me as a parent of two children on the spectrum, I was definitely thrilled to see so many autistic writers included," adds Gray, who also blogs at stark. raving. mad. mommy. "I want autistic voices heard not just because that's what's right, and what's helpful for all of us, but because I want my children's voices heard, too." On that note, she is happy that the panel included Rachel Kenyon, an Army wife and autistic parent of an autistic daughter and a neurotypical (NT) son, who blogs at Welcome to Stim City.
Among the notable additions: three mom bloggers of autistic kids who are themselves autistic: Jennifer at Asperkids, who Gray deems "an amazing resource, especially for parents of girls on the spectrum and tweens and teens on the spectrum"; Jean Winegardner at Stimeyland, whose "funny, honest, and self-deprecating" style led her to write, "I am like Buzz Lightyear: I am falling with style"; and Aussie Bec at Snagglebox, who offers up a blog that's "chock-full of resources, support, and information" for parents and teachers, including free downloads like 45 Ideas for Classroom Friendly Fidget Toys.
Julia Bascom of Just Stimming is one of the better-known autistic bloggers who prove you don't have to have children to provide valuable parenting advice. The newest entry in this category: The Third Glance. Gray writes that while the blog is written by a young autistic woman without kids who is working on her doctorate in science, it offers "powerful insights into growing up autistic." Because of that, "it's still one of our favorite parenting blogs because it helps you be a better parent."
Also represented, of course, are the neurotypical parents writing about their special-needs kids. Among those joining returning bloggers like Sunday Stilwell (Adventures in Extreme Parenthood), the anonymous Autism Daddy, and Erica and Lisa at Laughing Through Tears comes Jim Walter, author of Just a Lil Blog. Gray describes Walter as a "self-deprecating" neurotypical dad who writes a "hilarious and poignant" blog about his daughters—one autistic, one typically developing—and wife, who is recovering from breast cancer treatments.
Marj, who has two boys at opposite ends of the spectrum, is behind the ironically titled Domestic Goddess, another of the list's newcomers. The panel loved the fact that the blog "isn't entirely about autism," Gray writes. "Blog posts are about the whole of family life. It's a great reminder that even when it feels like everything in life revolves around ASDs, ADHD, SPD, OCD, and IEPs, there's more to your family and your kids than a bunch of acronyms."View Comments | Add Comment
'Talk Therapy' Takes on New Meaning
April 12, 2013 Beth Arky
I come from a family of talkers, so it was only natural that I would be the mom who couldn't resist providing a running narrative as I wheeled my son around the neighborhood in his stroller: "Look at the daffodils, buddy. Hey, there's a Lab!"
I didn't take all that random (and often ridiculed) kind of talk too seriously, but more and more, policy makers are doing just that. In "The Power of Talking to Your Baby," Tina Rosenberg notes that there's a huge disparity as to how much language children hear, and studies show that it divides along socioeconomics lines, with parents in welfare families speaking to their children dramatically less than their working- and middle-class counterparts. The low-income children's language deficit is already apparent at 1; by 3, the gap has grown exponentially, creating lags in language, understanding and learning. By high school, Rosenberg writes, "it becomes a chasm."
Research shows, Rosenberg notes in her piece in the Opinionator section of the New York Times, that "the greater the number of words children heard from their parents or caregivers before they were 3, the higher their IQ and the better they did in school." TV talk did not help; it hurt.
Providence, R.I., will soon be launching the first major experiment to see if increasing language exposure at home helps poor kids succeed in the classroom. Last month, it beat out 300 other cities to win the $5 million grand prize in Bloomberg Philanthropies' Mayors Challenge. The Providence Talks program will train a network of nurses, mentors, therapists and social workers who regularly make home visits to pregnant women, new parents and children to provide a new service: creating family conversation.
While we know that wealthier, more educated parents talk to their children more, there was no clear reason why, at least until researcher Meredith Rowe arrived at a new theory in 2008: that poor women just didn't know it was important to talk to their babies. Rosenberg writes:
No one had told them about this piece of child development research. Poorer mothers tend to depend on friends and relatives for parenting advice, who may not be up on the latest data. Middle-class mothers, on the other hand, get at least some of their parenting information from books, the Internet and pediatricians. Talking to baby has become part of middle-class culture; it seems like instinct, but it's not.
Providence plans to begin enrolling families next January. If the effort to teach parents to speak more to their young children proves successful, it could provide an exciting model that could be implemented elsewhere comparatively easily, at a low cost. No one expects an even playing field in our society of ever-widening class differences, but we should be doing all we can to close the educational gap. So if it turns out that talking—not silence—is golden, I'm more than fine with that.View Comments | Add Comment
ADHD Affects Girls, Too
April 9, 2013 Rachel Ehmke
Stories about overdiagnosis and over-pathologizing are popular these days, in part because the new DSM is coming out next month. But very little ink is spilled on the people who don't get a diagnosis when they should, or only receive one later in life, after years of living with their symptoms. Maria Yagoda, who was diagnosed with ADHD in college, is one such person, and she writes in the Atlantic Wire that her story is a familiar one—especially if you're a girl.
ADHD is something of a guy's club. When we think of ADHD we tend to think of boys who are hyperactive and impulsive, but the disorder actually comes in several forms. Some kids are more hyperactive, others are more inattentive, and many have a combination of the two. In general girls are more likely to have the inattentive type of ADHD, which means that they are regularly overlooked because their symptoms don't match our idea of what ADHD "should" look like. Dr. Ellen Littman, who wrote Understanding Girls with ADHD and spoke to Yagoda for her piece, estimates that a shocking half to three-quarters of all women with ADHD are not diagnosed. Dr. Littman suggests that part of the reason girls are underrepresented now is because boys were so overrepresented in the early clinical studies of ADHD, which were based on the symptoms of "really hyperactive young white boys who were being taken to clinics." Girls' symptoms also tend to tend to peak in puberty, which means that symptoms that might not have been impairing functioning in grade school (when most boys are getting their diagnoses) suddenly become a problem.
Because the signs of ADHD are more self-contained in girls, their symptoms are often considered traits or personal failings, as Yagoda considered her own extreme disorganization, forgetfulness, and poor concentration. She managed to get by until college, when she went off the rails:
I was wrongfully allowed a room of my own, leaving me with no mother to check up on "that space between your bed and the wall," where moldy teacups, money, and important documents would lie dormant. I maintained a room so cluttered that fire inspectors not only threatened to fine me 200 dollars if I didn't clean, they insisted it was the messiest room they had ever seen (boys' included!) in their twenty years of service. Throughout college, I would lose my ID and keys about five times a semester. I'd consistently show up for work three hours early or three hours late. I once misplaced my cellphone only to find it, weeks later, in a shoe.
As Yagoda later learned, this is common theme. Sari Solden, author of Women and Attention Deficit Disorder, says:
Often, if girls are smart or in supportive homes, symptoms are masked. Because they're not hyperactive or causing trouble for other people, they're usually not diagnosed until they hit a wall, often at college, marriage, or pregnancy. A lot of the things that are simple and routine to other people—like buying groceries, making dinner, keeping track of possessions, and responding to emails—do not become automatic to these women, which can be embarrassing and exhausting.
Happily, Yagoda says that medication is now giving her a "more normal, settled life," which is another thing that makes her firsthand account so interesting. Not only is she a girl writing about her own experience with ADHD, she's also just plain writing about what it's like to have ADHD. We're used to hearing that ADHD isn't real, or that ADHD medications are academic steroids used for getting kids into the Ivy League and then law school. It's almost a novelty for the public to have a window into the disorder as it actually is, and see medication as it is actually prescribed and used. As a girl diagnosed with ADHD as an adult, Yagoda had to deal with a lot of preconceptions:
"Of course you don't have ADHD. You're smart," a friend told me, definitively, before switching to the far more compelling topic: medication. "So are you going to take Adderall and become super skinny?" "Are you going to sell it?" "Are you going to snort it?"
Yagoda, who was prescribed Concerta, was able to say no to all of the above. It's a refreshing counterpoint to the story you thought you knew.View Comments | Add Comment
A Sandy Hook Mom Talks About Stigma
April 8, 2013 Caroline Miller
Parents who lost children in the Sandy Hook shootings were, not surprisingly, a bit hard to watch on 60 Minutes last night, as they struggled with tears and tried to use their loss to achieve some meaningful change. Mostly they were there to support gun control legislation, including universal background checks and limits on the size of magazines for automatic weapons. But one mother, whose 6-year-old daughter Ana was gunned down, also zeroed in eloquently on the lapses in our mental health care system.
Nelba Marquez-Greene, who said she is a licensed marriage and family therapist, noted that the United States lags on the resources for psychiatric illness, compared to other countries where she has practiced. But then she added:
I think one of the barriers or one of the challenges is that there's a whole lotta stigma attached to getting help. The fact that you have to go to a therapist or a psychiatrist or a psychologist, and then get a diagnosis for your child, that can be very humbling and scary for parents. I can't speak specifically for what happened with Adam Lanza and his family. As a mother, my heart breaks for Adam Lanza's mother.
It's often lack of resources that keeps kids from getting care, but it's also often lack of connection and support. Nancy Lanza seems to have struggled for years to get her son into a setting that would enable him to thrive, but the two of them ended up appallingly isolated. And the consequences were tragic, for them and Lanza's victims.View Comments | Add Comment
Are there more child psychiatrists or taxidermists in the US?
April 8, 2013 Caroline Miller
Okay, it's probably not a question you contemplate every day (unless, that is, you live in Brooklyn, which is a hotbed of hipster taxidermy these days). But it's one way to put in perspective the dramatic barriers we face to getting all kids who are struggling with psychiatric disorders the care they need to reach their potential. And if you take our Children's Mental Health Quiz you'll find out the answer, along with some other rather surprising comparisons. Everyone who takes the quiz earns us $1, thanks to our friends at Hunter Boot, to help us help more families in need.View Comments | Add Comment
Cheers for White House BRAIN Initiative
April 3, 2013 Michael Milham, MD, PHD
Yesterday, the Obama administration announced plans for a landmark initiative dedicated to transforming our understanding of the human brain. Referred to as the BRAIN initiative (Brain Research through Advancing Innovative Neurotechnology), the overarching goal of this effort is to discover "new ways to treat, prevent, and cure brain disorders", such as autism, dyslexia, attention deficit hyperactivity disorder and depression. Yesterday's launch was marked by an initial White House pledge of $100 million in 2014 funding for research by the National Institutes of Health (NIH), the Defense Advanced Research Projects Agency (DARPA), and the National Science Foundation (NSF). This announcement comes as a breath of fresh air in a time when neuroscientific and technological breakthroughs are increasingly being tempered by budgetary realities and funding cuts.
The Child Mind Institute has championed the acceleration of scientific discovery through innovation and collaboration, and applauds the BRAIN initiative. It is our hope that investigators funded through the initiative will embrace the emerging open science philosophy in the neuroscience community, and freely share novel data and methodologies with the broader scientific community. For its part, the CMI will continue its efforts to generate and share large-scale brain imaging datasets through CMI-sponsored efforts such as the 1000 Functional Connectomes Project and International Neuroimaging Data-sharing Initiative (INDI), as well as the upcoming CMI Biobank. It is our hope that data generated through these efforts will help to facilitate and accelerate the efforts of BRAIN initiative investigators, as they speed towards the delivery of biologically-based solutions to mental illness.View Comments | Add Comment
April Autism Events Reflect Spectrum’s Diversity
April 2, 2013 Beth Arky
As the sixth Autism Awareness Month—and third Autism Acceptance Month—kicks off, it's clear once again that advocacy efforts are as diverse as the challenges faced by those on the spectrum. The children, teens and adults included in these campaigns range from autistics who are nonverbal and unable to care for themselves to Aspies who are not only loquacious but eager to speak out about autistic identity.
While parent-founded Autism Speaks launched its Awareness Month to increase visibility of the disorder, most literally through its Light It Up Blue campaign, autistic adult Paula C. Durbin-Westby started the Acceptance Month to "Take Back April!" from Autism Speaks and foster "complete acceptance," which she defines as "pro-neurodiversity, pro-supports and services, against 'cures.' "
Released just in time for both months comes Chicken Soup for the Soul: Raising Kids on the Autism Spectrum, which features 101 short essays by mothers and fathers with children of all ages and levels of disability. It offers support, advice and hope, along with the message to parents that they are not alone.
The book opens with "This Is What It's Like" by Leigh Merryday (Flappiness Is), who has two young children, a typically developing daughter and autistic son. She writes that when she first heard her son's ASD diagnosis, she experienced "a kind of death" as she mourned the loss of dreams for her child—a common sentiment among parents. But she now possesses "a love that you can't imagine if you don't have a child born with a bulls-eye in a big, bad world."
In "Lost," Jennifer Bush (Anybody Want a Peanut?) shares a story that underscores why family life on the spectrum is often described as an emotional roller coaster. When her nonverbal son doesn't emerge from school during pickup, she fears he is in danger and thinks she will "never take another moment for granted, no matter how challenging his behavior." (It turned out he had slipped into a classroom.) But an hour later, when he's running "maniacally around the house, screeching and crashing into walls" and hitting and scratching her, she finds herself "red-faced and bursting with rage." She writes, "We parents of special-needs kids face overwhelming joy and sadness, intense love and frustration, breathtaking wonder and fear, often in the course of a single day.... We are given so much reason to be hopeless, and yet, sometimes hope alone propels us forward."
Karen Krejcha offers her poem, "Autism Does Not Define Me," which she wrote in support of her two ASD sons, only to realize later that she was an undiagnosed Aspie herself. Given the genetic link, more parents are making this self-discovery. Krejcha blogs at Aspierations and is president and executive director of Autism Empowerment, the nonprofit advocacy group she founded.View Comments | Add Comment
Over at Thinking Person's Guide to Autism, the editors are soliciting posts and captioned photos that will help "spread the word and further acceptance and understanding of autistic experiences, happiness, and rights." Meanwhile, the Autistic Self-Advocacy Network is offering to help activists and community members nationwide organize local celebrations. The Autism Science Foundation is likewise looking to move beyond awareness, with a Pinterest board devoted to its Autism Action Month Activities, including recommended books, blogs and apps, as well as events like today's World Autism Awareness Day at the UN.
'Disconnect': More Communication, Less Intimacy
April 1, 2013 Alan Ravitz
Disconnect, a film directed by Henry Alex Rubin and written by Andrew Stern, is incredibly timely, focusing on the way contemporary lives intersect digitally but never quite connect in the real world. It's a film about interpersonal intimacy, or the lack thereof, in an age of deceptively easy communication, a world in which we can hide in the noise we create. This isn't an easy movie, but it's well worth watching. You're not going to walk away "feeling good," as they say, but you will walk away feeling something.
Disconnect tells three intersecting stories. It is an ensemble drama like Shortcuts, Magnolia or Crash, but to simply call it a movie about intersecting lives ignores its deeper ambitions. It's a film about attachment, about the strategies we use to connect with each other, about why we choose these strategies, and about why they succeed or, more often, fail. In its focus on these issues, Disconnect most reminded me of Francis Ford Coppola's 1974 masterpiece, The Conversation, another story about the how and why of intimacy. In that film each of the characters is intensely private. No one tells anyone anything because they all have something to hide. Forty years later, in Disconnect, the characters are intensely public. Everyone seems to tell everybody everything, but somehow no one finds a way to connect because — surprise—they all still have something to hide. The first movie is about the way we conceal who we are in silence, and the second is about the way we conceal ourselves in noise. Both address the lies we tell, to ourselves and others, to build and sustain relationships.
Each of the characters in Disconnect is lonely. Some are lonely because they're narcissistic, others because they're injured, or depressed, or rejected. The narcissists don't know they need anyone until it's too late; the rest just aren't strong enough to assert their needs. But it turns out that everyone wants to make a connection. This is an inherent human quality, something we take for granted. The film addresses how we communicate this need, the codes we use, the information we protect. It's about the relationship between communication, intimacy, and our desperation to make a connection.
People don't just want to be loved. They want to be loved for who they really are. They want real relationships, to be seen and loved. In Disconnect, relationships begin technologically, with words typed on a screen. The characters can be who they want to be; they don't have to worry about being seen, so they don't have to worry about being loved. The Internet provides them with a safe space to explore intimacy. And these relationships are gratifying, but only to a certain point. When the characters take the next step, a real face-to-face connection, more often than not the relationships turn out to be disappointing. They were perfect when each person could pretend to be what the other hoped for. It's easy to promise to fulfill another's needs, but in real life this is much harder to do. Every relationship is a compromise. Nothing is free. Nothing is perfect. We all have to settle for less than what we want.
Disconnect is an excellent film, serious in intent, original in its narrative exposition—and its subject, need and intimacy, is compelling because it is so universal. This movie is about all of us.View Comments | Add Comment
Teens Lose Weight, Gain Confidence on 'The Biggest Loser'
March 26, 2013 Jessica Kashiwabara
This season of The Biggest Loser, the NBC weight loss reality series, featured three teenage contestants, two 13-year-olds Biingo and Lindsay, and 16-year-old Sunny. Each had their own trainer from the show and a nutritionist to guide them through their weight loss journey. Unlike the adult contestants, there were no threats of elimination and they were not weighed in weekly. Instead, the focus was on getting healthy and becoming a positive influence in their schools, homes, and communities.
I was curious to see how the show would take on working with kids for the first time. While controversial whether it's even healthy to put teens on a weight loss show in front of millions of viewers, the producers and trainers on the show did seem to attempt to tackle the ongoing and growing problem of childhood obesity with sincerity and a sense of responsibility. In an interview with trainer Jillian Michaels she said, about working with the teens, "The producers of the show have been consulting some of the top experts—pediatricians, child psychologists—to help us deal with this in the most delicate and appropriate ways."
It's hard not to get emotionally involved in the show, watching the trainers guide contestants through physical and psychological challenges and seeing the result of their transformations week by week. In one of the most heartbreaking moments of the show Sunny confronted her mom about her mother's own weight issues and said her biggest fear was to watch her mom die. Her mother, initially defensive, then broke down telling Sunny that mothers are supposed to take children's fears away, not cause them. They vowed to work on getting healthy together.
While these teens will continue their struggles to maintain a healthy body, it did feel like by the end of the show they had a better understanding of how to do it. They focused on goals that gave them something positive to shoot for, and on the way they got stronger. For the finale, instead of dramatic numbers on a scale, the teens' had a final reveal—Lindsay makes the cheerleading squad, Biingo gets onto a baseball team, Sunny fits into her dream prom dress. Despite the producer influence, all the teens did have a genuine glow of pride in their healthier bodies and a newfound confidence beaming in front of the live studio audience. As Sunny put it, "I'm so happy. All it takes is a step in the right direction and some perseverance... It's the best feeling you can have."View Comments | Add Comment
Phones, Brains, Hearts, and Babies
March 25, 2013 Caroline Miller
The headline—"Your Phone Vs Your Heart"—makes it hard to resist, and, indeed, the piece is hovering at the top of the New York Times most emailed list. In the article a psychology prof from UNC named Barbara Fredrickson describes research she claims shows that if you spend less time interacting with people in person, even if you're busy communicating with them by phone or computer, you lose some of your capacity for connecting.
The study itself isn't quite that grand: it actually just purports to show that interacting with people improves what's called "vagal tone," the state of the vagus nerve, which connects the brain and the heart, and is linked to overall health. Neurobiologists have already shown the converse, she says, that "by increasing people's vagal tone, we increase their capacity for connection, friendship and empathy."
Her argument is that not only is the brain highly plastic, which we know it is, but so is your cardiovascular system, and the ability to empathize, for example, is actually dependent on face-to-face exercise.
Your heart's capacity for friendship also obeys the biological law of "use it or lose it." If you don't regularly exercise your ability to connect face to face, you'll eventually find yourself lacking some of the basic biological capacity to do so.
I can't evaluate the science here, but what's interesting is the implication for children: That the amount of time spent looking at a video screen rather than another face could, if it's large enough, have long-term implications for a child's social development. It's not what's happening on the screen that we're worrying about; it's what's not happening face-to-face. And, as Fredrickson notes aptly, we should also worry about the amount of time a baby spends looking at a parent or caregiver who is talking on the phone rather than interacting with her.View Comments | Add Comment