The Child Mind BlogBrainstorm
'Parenthood' Tackles Romance on the Spectrum
Oct. 27, 2014 Beth Arky
While raging hormones and first attempts at dating can make adolescence daunting for anyone, the journey is that much harder for teens who struggle with social skills, including those on the autism spectrum. The latest Parenthood examined just how hard that experience can be with a story line in which Max Braverman tried to act on a crush.
Upon learning of his son's interest in Dylan—a brusque girl who calls Max "Asperger's"—Adam encouraged him, advising that "the foundation of relationships is based on common interests." Little did Adam realize that Max would take this to mean he should "study" Dylan by following her around with a notepad, going so far as to retrieve her crumpled sketch from the wastepaper basket.
Mom Kristina—and many viewers—were concerned that it looked like Max was stalking. In fact, one mom, Angelique, who has a 14-year-old son on the spectrum, says he may have been perseverating on Dylan. Perseveration is usually thought of as being "stuck" on stereotypical topics like trains, but it's also possible to perseverate on a person.
Kristina and Adam tried to explain feelings and relationships in a very analytical way to help Max understand. They told him that people can like each other on different levels on a "scale of affection," with 1 being the lowest and 5 being the highest; if both are at a 5, they're in love. But the numbers can change, which encouraged Max, who noted "the scale of affection is fluid."
Angelique says such a scale "relates to how we try to teach our kids something to give them 'guidelines' and they take it to the extreme, like it is concrete and they can control it." Adds another mom, Dixie Sargent Redmond, who has a 21-year-old autistic son, "It's interesting that the rules-oriented guide to relationships can be mined for much comedy in the Sheldon character on The Big Bang Theory, but Parenthood shows the reality of it."
While Kristina didn't want Max to even try with Dylan, fearing he'd be rejected, Adam said he has to believe a girl could like his son "that way." This really hit home with the mother of a 14-year-old autistic boy who was falsely accused of stalking a girl in school. "This is exactly how our situation played out," she says. "I was very guarded, not encouraging him. I even said the same thing: 'She won't like him.' Hubby was floored, excited and a little overzealous. I got on board and we encouraged. Then he hit a devastating wall of emotion when it didn't play out how he had imagined."
I'm sure many Parenthood fans watching this Thursday will be hoping things play out better for the lovestruck Max.View Comments | Add Comment
Kelli Stapleton: Can We Prevent Mom Meltdown?
Oct. 24, 2014 Caroline Miller
The very painful story of Kelli Stapleton, the mother who attempted to kill herself and her 14-year-old autistic daughter Issy last year, has created a highly emotional rift among autism parents and advocates. Some feel very strongly that examining what might have led a mother to attempt murder is tantamount to condoning it. Others feel that not trying to understand her emotional situation is tantamount to turning your back on how traumatizing caring for a violent child can be to a parent. The cover story on New York magazine this week isn't likely to change that. But it does point to several important realities that I think cut through the debate.
In the wake of Kelli's guilty plea in September and sentencing earlier this month, Hannah Rosin reconstructs radically different perceptions of the sequence of events leading up to the attempted murder and Kelli's mental state during that time. On the one hand is a portrait of a woman emotionally undone by the strain of managing a violent autistic teenager—one who had assaulted her, knocked her unconscious, and put her in the hospital repeatedly. On the other is a vision of a calculating attention-seeker who was tired of being stuck with a high-maintenance autistic child whose rights she failed to respect.
Whether or not you buy either of these views, the first inescapable conclusion is that respite and emotional support for caregivers is critical—both for the caregivers themselves and for their kids. When parents get emotionally isolated and desperate, it's not safe for either parent or child. This doesn't excuse Kelli Stapleton's apparent decision, described as an elaborate murder-suicide fantasy, that her teenaged daughter's life was hers to take. But if we want to avoid children being harmed by parents, we should try to prevent parents from becoming trapped and overwhelmed.
And the second inescapable reality is that parents, like everyone, can have emotional problems. You can argue that it's not useful to diagnose mental illness—did Kelli have PTSD, was she delusional?—in retrospect, after a murder has been attempted or committed. But if the goal is not to excuse but to prevent more such killing, it's useful to try to understand the path that led her to that moment.
One person who disagrees with me about this is Shannon Des Roches Rosa, mother of an autistic boy, who argues that this discussion creates too much sympathy for Kelli, when it's Issy who is the victim. "I want us to be more careful and compassionate when we talk about cases like Issy's, to remember who the victims are," she writes on BlogHer. "And if we parents find ourselves empathizing with Kelli, I want us to think long and hard about why."
Des Roches Rosa acknowledges how important support from a community is for parents who are struggling, but it's important to find the right kind of support. "You need to prioritize your safety and that of your child by finding parents who will."
Flannery Sullivan, the autistic parent of an autistic son who blogs at Life on the Spectrum: The Connor Chronicles, argues that discussing the strain of caring for aggressive kids and lack of services for them is critical to preventing future crimes, and that it does not equal justification for a crime.
"My hope is that someday there will be a set of protocols in place to address families living with chronic aggression and violence," she writes. "It is simply not possible to live with chronic aggression and not be negatively affected by it. I have no idea what that would look like, whether it was mandatory, ongoing involvement of CPS with families living under these conditions, or something else in its place, but I fear that we will not see an end to tragedies unless we do something to help these families."
The one thing both Des Roches Rosa and Sullivan point out is that it's tragic that Kelli Stapleton didn't reach out for help.
"Parents—like me, like you—need to hear that it's not a failure or shameful to ask for help, and we need to feel safe about doing so," writes Des Roches Rosa. "For our own sake, of course, and also because reaching out protects our kids as well as ourselves."
Adds Sullivan: "Kelli has been a friend to many in the community, and has helped many struggling families. I wish she could have helped herself. I wish she would have let someone else help her."View Comments | Add Comment
How Siri Connects With One Autistic Boy
Oct. 21, 2014 Caroline Miller
All over town this week, we suspect, there are people thinking of more interesting, more personal questions to ask Siri than "Where is the nearest pizza place?" Among other things, Apple's personal assistant is likely to be getting a lot of marriage proposals. That's because of an irresistible piece in the New York Times by Judith Newman, the mother of a 13-year-old with autism, about her son's budding relationship with Siri. If you haven't read it, do.
In the piece, Newman explains that Siri's inexhaustible patience for her son's questions about weather, trains, planes, buses and escalators—topics that tend to wear out non-virtual people—led him to talk to her as a friend. And her thoughtful, non-judgmental responses are encouraging enough to keep him engaged.
Gus: "You're a really nice computer."
Siri: "It's nice to be appreciated."
Gus: "You are always asking if you can help me. Is there anything you want?"
Siri: "Thank you, but I have very few wants."
Newman points out that plenty of people who don't have autism get a kick out of the kind of social reasoning built into Siri, but it's especially moving for a kid who has challenges communicating with (or even wanting to communicate with) peers. As she said on Good Morning America, "Siri will never be mean to him, she will never make fun of him, and she will give him a lot of information."
And if you haven't read it, do check out how she delicately declines Gus's marriage proposal.View Comments | Add Comment
A Much-Needed Consensus on PANS, or Acute-Onset OCD
Oct. 21, 2014 Caroline Miller
There's good news today for parents who've been extremely frustrated by the inability of experts to agree on what causes acute-onset OCD—first called PANDAS, and now PANS—and even whether it exists or not.
This is an often very serious syndrome that includes severe OCD along with a host of other disturbing symptoms and behaviors: tics, emotional instability, irritability, aggression, developmental regression, motor abnormalities, incontinence, and eating problems. Parents say it comes on virtually overnight, and it does not respond predictably to standard OCD treatments.
PANS (pediatric acute neuropsychiatric syndrome) is thought by many to be an autoimmune response to an infection—often, but not always, strep—that can be treated with some success with antibiotics and IVIG, a treatment used for autoimmune illnesses. But for decades, others have questioned whether the condition is real, is really linked to infection, or whether treatment with antibiotics has been proven effective.
Now an interdisciplinary group of PANDAS and PANS clinicians and researchers have developed a consensus report, published in the Journal of Child and Adolescent Psychopharmacology, that spells out what is known about the condition and how it should be diagnosed. The group met in May of 2013 for what they called the First PANS Consensus Conference to try to hammer out diagnostic boundaries and specific criteria for PANS, as well as a very detailed evaluation process, including medical testing. While it's aimed at clinicians and researchers, this could also be helpful for parents who still have a hard time persuading doctors to do the tests that are needed to rule out alternatives and confirm a diagnosis of PANS.
"Many children with PANS are extremely ill, with extreme compulsions (licking shoes, barking), motor and phonic tics (whooping, wringing hands), behavioral regression, and terrifying episodes of extreme anxiety or aggression," writes Dr. Kiki Chang, a professor of psychiatry at the Stanford University School of Medicine, and one of the coauthors of the report. "The behavioral manifestations often prompt rapid referral to psychological or psychiatric services, but all patients should receive a full medical evaluation."
The consensus report is part of a special issue of the journal devoted to PANDAS and PANS that will be published in January. You can download the report here.View Comments | Add Comment
Teenagers and the Right Kind of Sleep
Oct. 19, 2014 Caroline Miller
In the battle to get teenagers to get a decent amount of sleep, here's a valuable weapon: In the New York Times, Benedict Carey explains the role of sleep not just in resting but in learning. He explains that the different parts of a night's sleep have different roles in consolidating learning. So if a student's goal is to perform well in the morning, the kind of test or task on the agenda determines whether it makes more sense to stay up late, or get to bed at a regular hour and get up earlier in the morning.
Research shows, Carey writes, that deep sleep—the knocked-out cold kind that happens in the first half of the night—is when the brain consolidates facts and figures. REM sleep, the dream-filled kind that comes nearer the end, is for deciphering patterns and comprehension. So if the challenge in the morning is mostly about remembering facts and figures, it doesn't make sense to stay up 'til 2am, missing all that good deep sleep. Better to go to sleep earlier and get up earlier, if necessary, for a refresher. And if it's comprehension/problem-solving kind of test, stay up a little later and sleep until the normal time in the morning.
Who knows how much difference these distinctions make, but for kids who tend to see going to sleep as a waste of time, or even a cop out, it could be useful in persuading them that it deserves more respect.
For more on why teenagers get so little sleep, and why it matters, see Why Are Teenagers So Sleep Deprived?View Comments | Add Comment
Dr. Pasko Rakic on the Map to the Human Brain
Oct. 13, 2014 Harry Kimball
Last week the Child Mind Institute hosted a fascinating group of scientists for our annual On the Shoulders of Giants symposium, and I have to admit it was a little mind-blowing. Dr. Pasko Rakic, our 2014 Distinguished Scientists Award recipient, began the program by reviewing his 50 years of research into the basic development of the cerebral cortex—the center of our higher-level brain function. Unlike other areas of the brain, he said, all of the neurons the cortex will ever have are produced and "migrate" to their assigned locations early in development. Backed up by his innovative experiments, the picture he painted of this process verged on the fantastic: brain cell after brain cell climbing a rope-like filament to a precise location encoded in our DNA. And if they don't find their spot correctly, the result can be a psychiatric or developmental disorder.
That code is the "map" of the brain, Dr. Rakic said, and it has been his life's work to discover its intricacies. At the Roosevelt House at Hunter College, he pointed to a photograph displayed on the wall. "These three people here tried to change the map of the world," he said, referring to the image of FDR, Churchill, and Stalin. "And why did they fail? None of them were neuroscientists."
Dr. Rakic's contributions to our understanding of the human brain have been revolutionary—but he's even more optimistic about the future, represented in the room by this year's Child Mind Institute Rising Scientists, high school students in the New York area with an exceptional dedication to scientific inquiry. "Looking at these young people, I must say I envy you," he told them. "What you are going to be able to discover with the new methods coming your way—you are the giants that are coming."
Dr. Nenad Sestan echoed Dr. Rakic's sentiments in his presentation on the specific genetic signaling involved in the development of a single type of cortical neuron; and Dr. Matthew State spoke about how that genetic knowledge may soon lead to improved understanding and treatment of disorders like autism. Dr. State hoped the Rising Scientists would leave the presentation thinking, "Wow, it is an amazing time to be doing this," and he had this prediction: "Within your lifetimes you are going to be present at a profound transformation of our understanding of mental illness, our ability to treat it, and what it means in society to have a brain disorder."
With the amazing foundation provided by Drs. Rakic, Sestan, and State, there's no reason this cannot be true.View Comments | Add Comment
Kids vs Phones
Oct. 9, 2014 Caroline Miller
Highlights magazine does an annual "State of the Kid" survey of readers, and it gives us a chance to see things from the 6- to 12-year-old point of view. In addition to their favorite TV shows (SpongeBob SquarePants), bands (One Direction), and books (Diary of a Wimpy Kid), we get a snapshot of family life. And what looms large in this snapshot? Parental cell phones.
Some 62% of the kids said they found their parents distracted when they were trying to talk to them, and cell phones were the largest source of distraction—more than siblings or work. "I know my parents are really listening to me when they are sitting down and not on their phones," a 10-year-old wrote.
And to underscore how much emotion is attached to the cell phone, Highlights asked kids what they thought their parents would do if they lost their phones for a day. "I think my mom would go crazy and then have a heart attack. And then faint," one 8-year-old wrote. Said another: "Freak out, but I'd be happy."View Comments | Add Comment
Ask Lena Dunham About OCD
Oct. 6, 2014 Jessica Kashiwabara
Lena Dunham has shared her personal struggles with obsessive-compulsive disorder publicly before (including a recent New Yorker essay entitled "Difficult Girl: Growing Up, With Help"). On her HBO show Girls, she gives a sensitive and realistic portrayal of what it's like for a young person dealing with OCD through her character, Hannah Horvath. Now in a video series called "Ask Lena" Dunham continues to speak out. In our favorite video a young woman with OCD, who admits to self-medicating and a dislike of doctors, writes in to ask Dunham's advice. In her response Dunham speaks like an advocate who really knows what it's like:
There's so much stigma around mental illness in our society, and you probably feel like you're supposed to muscle through this or tough it out. But if you had diabetes, you wouldn't say, "I don't think I should be allowed to have insulin." In order to tame the beast enough that you can analyze it, you need to go and talk to someone who can help you in that department. And you need to be talking to a therapist because it sounds like it's really affecting you on a day-to-day basis, and that there's something within you that feels like you don't deserve help, and you do.
Dunham is using the videos to promote her first book, Not That Kind of Girl: A Young Woman Tells You What She's "Learned." No quibble with that: It's a pragmatic and powerful message from Dunham, who reminds us that we all deserve help and shouldn't feel bad about asking for it. For more resources on OCD, feel free to visit our landing page.View Comments | Add Comment
'Friday Night Lights' Creators Tackle Football Violence
Sept. 30, 2014 Jessica Kashiwabara
Both the author of Friday Night Lights and the director of the film version turned heads recently by criticizing football for its violence and the health consequences its players face. Director Peter Berg wrote that his son is no longer allowed to play football and author Buzz Bissinger said that helmets should have warning labels like cigarettes, suggesting:
WARNING: MEDICAL STUDIES HAVE DETERMINED THAT FOOTBALL CAN RESULT IN EARLY ALZHEIMER'S, DEPRESSION AND DANGEROUS MOOD SWINGS FAR BEYOND THOSE OF THE GENERAL POPULATION.
Both of their pieces were on Time magazine's website, which also ran a cover story about a high school football player who died after sustaining a traumatic brain injury. The headline read "He Died Playing This Game. Is Football Worth It?" They were tough, provocative pieces, that not all parents would endorse, but they expressed the difficulty parents face in responding to the information that's coming out about football and brain injury.
The pieces come on the heels of a court filing made public this month from the NFL stating that retired players do incur brain damage at a higher rate than the general public. According to the documents, nearly one-third of former players will develop at least moderate neurocognitive problems and these impairments surface at a much younger age than the general population. Actuaries found that former players are at higher risk for Alzheimer's, dementia, Parkinson's, and ALS.
With these findings, the NFL has publicly acknowledged a link between football and long-term neurological impairment-a big step after years of denying any connection. But the announcement also leaves us with questions. Chief in parents' minds are the risks of allowing their kids to play football. With people like Bissinger and Berg speaking out, the tide might be starting to turn against one of America's favorite pastimes.
In response to safety concerns, this season the NFL has already made changes including banning hits with the crown of the helmet and placing neurological experts on the sidelines during games. College conferences like the Pac-12 and Ivy League have set weekly caps on full-contact hours for practices. Heads Up Football, a program launched in 2012 by the non-profit USA Football, aims to have all youth league coaches nationwide go through certification courses-teaching proper tackle techniques to reduce helmet contact, among other safety guidelines. Hopefully awareness is going to be a game changer.View Comments | Add Comment