The Child Mind BlogBrainstorm
Daryl Hannah Reveals Her Autism
Sept. 26, 2013 Beth Arky
The autism community can claim a new high-profile member: Daryl Hannah, who first came on the Hollywood scene in the early '80s with iconic roles in Splash and Blade Runner. In the new issue of People, Hannah opens up about her autism and its impact on her career. The 52-year-old, who was diagnosed as a child, hid the disorder from movie executives. But her "debilitating shyness" prevented her from doing talk shows and attending her own premieres "not because I was above it," she says, "but because I was terrified."
So why pursue a movie career, something she did at 17? Hannah says that as a girl, "acting for me was about going to the Land of Oz and meeting the Tin Man. It still is." But it also meant being the center of attention, which "always freaked me out." Hannah was pushed even further into the spotlight by dating the likes of John F. Kennedy Jr. and Jackson Brown, navigating the possibly even-bumpier experience of love on the spectrum. More recently, she's been linked to Wallflowers keyboardist Rami Jaffee.
While Hannah was diagnosed, it's not uncommon for girls on the spectrum to fly under the diagnostic and/or societal radar, unless they also have cognitive or behavioral challenges like ADHD. Even though they have the same issues with social interactions, intense interests, and sensory integration problems as boys, either clinicians miss autism in girls because the latter present differently or because girls are "better able to cope with any social or communication difficulties." This may at least in part account for the disproportionate number of boys who receive autism diagnoses.
"Girls can be overlooked because it is considered more socially acceptable to be shy," says autistic advocate and education professor Elizabeth (Ibby) Grace, who blogs at tinygracenotes. Grace, who serves on the board of Special Gifts Theatre, a youth company in Chicago, says she's "delighted" that Hannah found acting, which also "changed my life. Acting teaches you safe ways to connect with yourself and others and to express [yourself]. For me as an autistic young woman, it was a wealth of information, like a key to the world. It is almost like I learned to play myself, to transmit my authentic being in ways others can understand, and not be afraid to take risks understanding others."
While Hannah continues to rock and "stim" incessantly, common autistic traits (see video of an interview she did in 1989), she says she has learned to navigate the disorder that had her childhood doctors recommending medication and institutionalization. (Her mother refused.) "I'm a grown-up now," says the actress and environmental activist, who will speak out for causes she's passionate about. "I've learned a couple of things that would've really made my life easier if I'd only known them 20 years ago."
Her possible strategies? She has created a quiet life out of the public eye, acting sporadically (Kill Bill) and living off the grid, surrounded by a menagerie of animals, including two llamas and a rescue pig named Molly.View Comments | Add Comment
ADHD or Narcissism?
Sept. 26, 2013 Rachel Ehmke
"ADHD, or Childhood Narcissism" is the title of an article that has been attracting attention—and double-takes—on The Atlantic's website. It was written by Enrico Gnaulati, a clinical psychologist concerned by what he sees as our increasing tendency to blame ADHD for typical childhood behavior—or what he calls "childhood narcissism." For the record he doesn't mean narcissism, the personality disorder, he means the "overconfident self-appraisals, craving recognition from others, expressions of personal entitlement, and underdeveloped empathy" that all kids share at some point as part of normal development. But some kids take longer to grow out of their childhood narcissism, and those kids, Dr. Gnaulti writes, often get mislabeled as having ADHD.
Part of the problem, he says, is our familiarity with the symptoms of ADHD. More than any other disorder, it's the one that comes to mind when kids are acting out or having trouble concentrating in school. We are all overly susceptible, he argues. Even parents:
Today's parents are well versed in ADHD terminology. They can easily be pressured into bypassing richer descriptions of their kid's problems and are often primed to cut to the chase, narrowly listing behaviors along the lines of the following:
Yes, Amanda is very distractible.
To say that Billy is hyperactive is an understatement.
Frank is impulsive beyond belief.
Jumping to conclusions about a child's symptoms is, indeed, dangerous, because many behaviors we associate with ADHD could also indicate anxiety, a learning disorder, or even, as Dr. Gnaulati points out, a lack of maturity. "Does Ernesto have impulse-control problems or are his emotional boundaries underdeveloped?" he asks. A poor evaluation from a harried pediatrician won't investigate the other possibilities.
Right now Dr. Gnaulati also has an essay on Salon called "That's not autism: It's simply a brainy, introverted boy" and a new book out called Back to Normal: The Overlooked, Ordinary Explanations for Kids. We support his campaign for more careful diagnosis, but we can't help thinking about how parents of the kids he's calling "normal" feel. If your child is having problems severe enough that the school is complaining, your family is suffering, and you decide to consult a doctor, ADHD or not, you need and deserve help. Telling parents that kids will "just grow out of it" if they are really impaired at school is a recipe for frustration, failure, and negative consequences as they get older.
Another recent story about the rise of "emotional intelligence" programs at schools might have the answer. The story, which was in the New York Times Magazine, discussed how some people believe that teaching students "noncognitive skills" like self-restraint, persistence, self-awareness, and emotional regulation might improve their academic ability and future lives. For kids who are less emotionally mature, getting extra help in these areas could certainly be significant. If successful, these programs could also potentially avert the kind of misdiagnosis that Dr. Gnaulti is writing about and function as an early intervention that prevents a child's anxiety from ever reaching a clinical level. The emotional intelligence movement is in its early days yet, but we're looking forward to hearing more about it.View Comments | Add Comment
How Trauma Changes Genes (and How We Can Change Them Back)
Sept. 23, 2013 Caroline Miller
We know that children who experience abuse or neglect are "off the charts at risk," as Dr. Joan Kaufman puts it, for psychiatric disorders like depression, anxiety and substance abuse. What's more, they're less likely to respond favorably to the treatments that evidence shows work well for other people. And research has shown that children who have been maltreated are also more at risk for a host of physical ailments, including heart disease, respiratory illness, diabetes, and cancer.
What's going on here? Dr. Kaufman, a trauma and resilience expert at Yale University School of Medicine, gave a talk at the Child Mind Institute Friday, explaining our current understanding of how adverse experiences affect childhood development. It was a stunning demonstration of the way insights from animal research, human genetics, and clinical studies can complement and further each other.
We know that some kids are genetically predisposed to be more resilient than others. But we now have evidence that risk for psychiatric illness can be increased by environmental factors that change not what genes you are born with but how those genes function—as Dr. Kaufman put it, "chemical modifications to the DNA that can silence certain genes." Children who have adverse early experiences have been shown to have more of these changes, which are called epigenetic, than other kids do in several sites on the genome that are involved in modulating stress responses. These epigenetic changes make them less able to absorb stress in a healthy way; essentially, the genes that work together to turn off the stress response at an appropriate time are not functioning normally.
This reflects what we know from animal studies. Dr. Kaufman cites research that looked at rats who have been denied important maternal nurturing in their first few days, either because they were removed from their mothers or because the mothers were abnormally low on "licking and grooming"—seriously, that's what they call it. Those rats who experienced low L&G as pups had significantly higher stress reactivity—aka less resilience—as adults. Brain scans of the rats show corroborating decreases in the brain activity in regions that involve processing and modulating the stress response.
Most recently Dr. Kaufman and her team were able to do DNA analysis of a group of 96 children who been removed from their parents due to abuse or neglect and 96 control children. That analysis showed significantly greater epigenetic changes in the abused children than the other kids at almost 3,000 sites, on all 23 chromosomes. While three sites have been identified that predict depression and other psychiatric problems, others may help explain the association between adverse childhood experiences and various medical problems, from heart disease to cancer.
The good news in all this is that the right combination of nurturing and treatment has been shown to reverse those epigenetic changes that affect stress reactions and make kids more prone to psychiatric and other illnesses. As Dr. Kaufman put it in her talk, "Epigenetic modifications are often long-lasting, but they are not necessarily permanent."
We'll have more from Dr. Kaufman on childmind.org about treatment that effectively helps children who have been abused recover their resilience.View Comments | Add Comment
Louis CK on 'Conan': Phones 'Toxic' for Kids
Sept. 20, 2013 Harry Kimball
Personally, my favorite part of comedian Louis C.K.'s appearance on Conan last night was his story of being overcome with emotion while driving and listening to Bruce Springsteen's "Jungleland" and pulling over by the side of the road and crying it out. I can relate to that.
But this was all in the context of a bigger discourse on preserving essential parts of our humanity in the digital age that has inspired kudos across the internet. He started with a reliably hot-button issue: kids and technology, particularly mobile devices. And he sounds like an expert in development—or at least an engaged father:
I think these things are toxic, especially for kids...they don't look at people when they talk to them and they don't build empathy. You know, kids are mean, and it's 'cause they're trying it out. They look at a kid and they go, "You're fat," and then they see the kid's face scrunch up and they go, "Oh, that doesn't feel good to make a person do that." But they got to start with doing the mean thing. But when they write "You're fat," then they just go, "Mmm, that was fun, I like that."
C.K. is spot on concerning the apparent lack of consequences and social reciprocity that comes with digital communication and leads to things like cyberbullying or the unwise sharing of delicate photos. But he also goes further, putting forward an argument for fully engaging not only with other people but with your own feelings—hence the "Jungleland" anecdote. With all the stimulus available to us from smartphones and the society that produces them, he says, "you never feel completely sad or completely happy, you just feel kinda satisfied with your product, and then you die."
That's pretty bleak, but then Louis C.K. is a pretty bleak thinker. His conclusion at least looks towards the future while being practical in a sort of metaphysical way: "So that's why I don't want to get a phone for my kids."View Comments | Add Comment
Disney Guts Special-Needs Passes
Sept. 19, 2013 Beth Arky
For the past decade, Disney has played good fairy to special-needs families with its theme parks' Guest Assistance Card program, which provides accommodations for children and teens with physical as well as cognitive, developmental, or behavioral challenges. Those have included autism, ADHD, and sensory processing issues, which make it impossible for children to endure long waits, especially in noisy and crowded places. But this week it has been reported that Disney is ending the GAC program, and substituting a system that special-needs parents see as untenable for their families.
According to the reports, GAC will be replaced next month with something called the Disabled Assistance System. While the current program offers a variety of benefits, including shorter wait times at some of the rides, DAS will require special-needs families to visit kiosks around the parks for passes for each ride, and then wait a period of time commensurate to the wait time on line before going on the ride. (For detailed information on what a GAC card can and cannot do, see Aunesty Janssen's Temporary Tourist blog.)
The changes were incited by reports of wealthy parents hiring disabled tour guides to bypass long lines. While special-needs parents recognize the need to change the system if there is substantial fraud, they protest that the new system won't work for their kids. Today, a petition appeared calling for Disney's top executives to hear the concerns of autism families over the new plan.
Jo Ashline, who wrote a heated blog about the changes for Special Needs Orange County, has two sons; Ian, 10, is neurotypical, while Andrew, 11, is severely autistic with global and cognitive delays and epilepsy.
"Maybe the Disabled Assistance Pass will benefit some people, and for them, I say hooray," she wrote. "But for families like mine, where the special needs of our loved ones are varied and require specific accommodations, this new system will be nothing short of a nightmare. Our son Andrew wouldn't last more than an hour or two and that means I can't see our family ever returning to The Happiest Place on Earth."
The possibility for meltdowns is rife under DAS, says Janssen. Now, to get her 3-year-old autistic, sensory-challenged son out of the house and on the way to Disney, "we have to discuss the plan, like shopping, rides, and the Little Mermaid. But if we veer from the pattern, we have a meltdown." Under the new system, families couldn't create such a routine since they would have to travel between kiosks to obtain passes as shorter wait times become available.
Jennifer Fortwengler, whose 13-year-old son was diagnosed with Asperger's and anxiety, commented on Facebook that she was "disappointed but not surprised" about the changes. GAC, she notes, "makes Disney World doable for us but it's easy for unscrupulous people to abuse. This new system though sounds confusing and complicated and not at all like a workable long term solution."
But Janssen, the mother of six, also sees the potential for even greater fraud. Now, special-needs families must know to go to guest services to get their GAC; there have been times she's seen distressed families who clearly weren't aware of the program. But once the general public realizes they can get special passes simply by going to a kiosk and declaring a family member has a disability, there's nothing to stop people from doing so, or even having family members split up to get passes from different kiosks. If Disney doesn't "see how that can be flagrantly abused, I don't see that they've thought this through," she says.
Janssen says that when it comes to special-needs accommodations, Disney could borrow a page from Universal and Sea World. Universal's red pass allows families to either enter a ride's express lane or receive a return card, depending on the wait. Even better, the theme park provides "Child Swap Rooms," air-conditioned waiting rooms placed at the end of the ride. "A child can see daddy go on the ride, get off, and now it's mommy and my turn," she says. At Sea World, her son can go underground to view the dolphins, getting a break from the sun, heat, and noise. "There's no reprieve at Disney," she says. "You're walking in the hot park."
Fortwengler, whose family has visited a Disney park on a nearly annual basis for years, says she isn't sure they can continue to do so. This would be a shame, given that she feels the parks have benefitted her son: "We have seen some amazing leaps in terms of language, social skills, and even physical abilities at Disney World. I hope Disney is able to work this all out so that all more families can experience the magic we've been able to."
Fortwengler isn't the only mom to feel Disney has helped her son progress. Janssen says she believes her son allowed his grandmother to finally hold him because "he got to practice the hugs with the princesses. He would choose to see Princess Aurora. Slowly, it was OK for us to touch him. Even the doctor can get more touches."
A Massachusetts mother of two boys—a 10-year-old neurotypical son and a 9-year-old diagnosed with autism, anxiety, and ADHD plus sensory issues—says she's "horrified" by the news. "There are very few typical trips or even local activities that we can do as a whole family. We joined the Disney Vacation Club because the GAC made us feel almost like a typical family for one week each year. My husband is calling Disney today to find out how to sell our shares."
She offers a picture of her son with Stitch, lamenting:,"I will probably never see this smile again."
Update, 9/20/13 Disney has released the following statement:
"Disney has long been at the forefront of making our parks accessible to all guests. At this time, we are reviewing a number of considerations and remain committed to providing accommodations for guests with disabilities."View Comments | Add Comment
-Kathleen Prihoda Manager, External Communications Walt Disney World Resort
Resources for Autism Parents in Crisis
Sept. 17, 2013 Beth Arky
An Arizona mother is charged with the murder of her two children, at least one of whom was autistic. A Michigan mother's failed murder-suicide has led to charges of attempted murder of her autistic daughter. These and other tragic cases make it clear to us that both parents and autistics are in need of supports when they are in crisis.
It's important for a parent who feels she can't handle a dangerous situation with a child—or who is so distraught that she is thinking of harming her children—to know that there are other options for getting help beyond involving the police with a 911 call. These are resources you might want to investigate when you are not in a crisis situation; sometimes, just knowing you're prepared with a back-up plan is enough to make you feel in control during difficult situations
Mobile crisis units
A mobile crisis team is made up of mental health professionals such as psychiatrists, psychologists, nurses, and social workers who can come to the home to provide a range of services to anyone who is experiencing, or is at risk of, a psychological crisis. What can they do? Emergency mental health assessment, crisis intervention, supportive counseling, information and referrals, links to community-based mental health services for ongoing treatment, and follow-up. Run by voluntary agencies and municipal hospitals, the teams may arrange transportation to an emergency room if it's deemed necessary. They will also call the police if the individual in crisis will not go to the hospital willingly and meets specified legal criteria. New York City residents can learn more about this program here; crisis units in other areas may be found via a search engine.
Medicaid waiver providers
If children and teens are covered under a Medicaid waiver, a parent in crisis may check with her service coordinator to see if temporary emergency shelter is available for the children until she can get the support she needs and the home stabilizes.
Private ambulance companies
If parents feel the crisis merits calling 911 but don't believe the police need to be involved, there is another option: a private ambulance company. This also allows parents to specify the emergency room they wish to go to, which is not the case when EMS is called. Parents may want to ask treating clinicians and other parents which pediatric mental health ER in their area has the best record in dealing with crises situations.
Autistic advocate Paula Durbin-Westby has also compiled Emergency Information: Autism Resources for both parents who feel they may harm their child and autistics who feel endangered. It includes information on such organizations as the National Domestic Violence Hotline, the National Suicide Prevention Lifeline, and the Autism Women's Network.View Comments | Add Comment
Max Finds New Passion in 'Parenthood' Premiere
Sept. 13, 2013 Beth Arky
The wait is almost over, Parenthood fans. When season five premieres September 26, Kristina is cancer-free and, as this clip shows, Max is brimming with familiar spectrum-y qualities, from his precise time calculations to a singular new "hobby"/passion/obsession—photography—taking over his life (and the lives of all around him). Reaction to news of the return of Hank, Sarah's former love interest, has been decidedly mixed. Based on this episode—in which he tells the boy that people "may be a pain in the ass," but he needs to shoot 10,000 pictures of them to make something of himself as a photographer—he's going to have to win us over. Still, we're excited to see Max excited.View Comments | Add Comment
Celebs Share Their Bullying Stories on Video
Sept. 10, 2013 Beth Arky
What do Taylor Swift, Justin Timberlake, and Kate Winslet have in common? All talented, successful bold-faced names? True. It's also true that they were all were bullied as kids and teens, and all are featured in You Are Not Alone, a powerful anti-bullying video made to be used during school assemblies.
The video features photos of the stars during their awkward years and then again, as we recognize them, along with their memories of being tormented as far back as grade school.
"If you didn't play football, you were a sissy," Timberlake is quoted as saying. "I got slurs all the time because I was into music and art." Rihanna recalls that while having lighter skin wasn't a problem it home, the harassment over it "continued to my very last day of elementary school." Eminem, a shaggy-haired redhead in his class photo, shares, "I was beat up in the bathrooms, in the hallways, shoved in the lockers—for the most part for being the new kid."
The photo of a round-faced girl is accompanied by the caption, "I was bullied for being chubby. Girls told me nobody would ever fancy me." This from the actress who grew up to be wooed by Leonardo DiCaprio in Titanic. Even Kate Middleton wasn't spared—when she'd sit down at the lunch table, the other kids would get up, she has said.
The video also highlights how some countered the bullying. When Michael Phelps was picked on for his "sticky-out ears," being gangly, shaving his legs and wearing a Speedo, the adversity "made him stronger and work harder." And as for the blonde, blue-eyed girl in cornrows who would grow up to be pop sensation Swift? "If I hadn't come home from school miserable every day, maybe I wouldn't have been so motivated to write songs."
Hall shows the video in schools. "I've had girls come up and thank me for showing them the pictures of Rihanna and Taylor Swift and Megan Fox and Princess Kate," she says. "It helps them to feel a little better about themselves to see the celebs in their awkward stages and to know that 'totally cool' people were bullied, too."
In other words, they are not alone. And it's more than possible to beat the bullies.View Comments | Add Comment
What Drives Teenagers to Suicide?
Sept. 9, 2013 Caroline Miller
Months after a brutally bullied gay teenager named Jadin Bell hanged himself in a small town in eastern Oregon, a Portland novelist named Pauls Toutonghi was moved to investigate. The father of 3-year-old twins, Toutonghi found that he couldn't stop wondering what Jadin had been feeling and how his parents were dealing with his death.
He was moved by the sheer number of young people who commit suicide—4,600 of them a year, according to the CDC—but also by the fact that he, too, had tried to commit suicide as a teenager. Toutonghi isn't gay, but he was teased in school for being overweight. That, coupled with stress at home, contributed to what he calls "a toxic cocktail of self-loathing."
Toutonghi writes in Salon that he doesn't remember climbing out the window of his bedroom with the intention to jump, but he does remember vividly his inability to manage his emotional anguish, though the reasons for it, in retrospect, seem insignificant. "I could not calm it, could not control it, could not find relief," he writes. While he panicked at the last minute and changed his mind about jumping, he slipped and fell the 20 feet to the concrete driveway, and was lucky to be alive. In the emergency room, he was able to cover his suicidal intentions with a flimsy story, and he believes no one in his family was the wiser.
I recommend the story for the details about Jadin's life and death, and his parents' efforts to come to terms with their loss, but also for Toutonghi's awareness of how vulnerable teenagers are to emotional pain, despite loving and supportive parents. Jadin's father, Joe Bell, accepted his son's sexuality and admired him for coming out. "What Jadin did took enormous courage," he told Toutonghi. "But it destroyed him."
And Joe Bell, too, was no stranger to the suicidal feelings of teenagers-he tells Toutonghi of his own close brush at 17. "In the middle of the night, he'd taken his dad's .22 caliber pistol to his bedroom," Toutonghi writes. "He'd held the gun in his hands, willing himself to raise it to his temple and pull the trigger. He'd cocked the hammer. But then his determination had faltered. He'd slipped the gun beneath his pillow—and gone to sleep."
The piece is moving on all counts—not only about the teenager who died, and the thousands like him who take their own lives ever year, but about those who come painfully, frighteningly close.View Comments | Add Comment
A Sandy Hook Mother Thanks Teachers
Sept. 9, 2013 Beth Arky
With New York City students returning to public school today, we can't think of a timelier, or more touching, tribute to those who work with our children than this letter by Nelba Marquez-Greene, one of the parents who lost a child in the Sandy Hook Elementary School rampage. Marquez-Greene's 6-year-old daughter, Ana Grace, died on December 14, 2012, in the mass shooting; her son survived.
In the letter that appears in Education Week, Marquez-Greene writes eloquently of her admiration for the courage, faith, and love with which teachers and other school employees returned to Sandy Hook after the shooting. "When I asked my son's teacher why she returned," she writes, "she responded, 'Because they are my kids. And my students need me now more than ever.' "
Marquez-Greene notes that it's courageous teachers who support children like her son, who have "lived through traumas no child should have to," as well as "students who are left out and overlooked, like the isolated young man who killed my daughter."
She would like to see teachers get more credit for the work they do. "Real heroes don't wear capes," she writes. "They work in America's schools."
She encourages teachers to "have faith that your hard work is having a profound impact on your students." At a time when teachers are often demoralized, we hope educators and parents alike will take in this mother's message to heart.
Marquez-Greene writes that sending their son back to the school where their daughter died was excruciating: "We sent him because we didn't want him to be afraid. We sent him because we wanted him to understand that while our lives would never be the same, our lives still needed to move forward."
His teacher sent daily updates on their son's progress, from his behavior to what he'd eaten for lunch. "And four months later, when my son finally smiled one day after school, I asked him about it," Marquez-Greene writes. "His response? 'Mom. My teacher is so funny. I had an epic day.'"
We wish all students, teachers, and parents equally epic days.View Comments | Add Comment