The Child Mind BlogBrainstorm
Seinfeld’s Autism Announcement Creates a Stir
Nov. 7, 2014 Beth Arky
Jerry Seinfeld's surprising revelation to Brian Williams last week—that he thinks he's on the autism spectrum—immediately became a hot topic in the autism community, drawing both praise and criticism.
"I think, on a very drawn out scale, I think I'm on the spectrum," Seinfeld, 60, told Williams. "You're never paying attention to the right things. Basic social engagement is really a struggle. I'm very literal. When people talk to me and they use expressions, sometimes I don't know what they're saying. But I don't see it as dysfunctional. I just think of it as an alternate mindset."
While Seinfeld lacks a formal diagnosis, there are many adults who have gotten diagnosed later in life because Asperger's syndrome wasn't a diagnosis when they were kids. (While the DSM-5 did away with the Asperger's diagnosis, instead placing people on a wide spectrum from more to less challenged, many in the community continue to use the term.) In fact, celebrities including Daryl Hannah, Dan Aykroyd and Susan Boyle were only diagnosed as adults. And some adults only seek out a diagnosis after their child receives an autism diagnosis, leading them to recognize the traits in themselves.
Seinfeld's announcement angered a vocal contingent. While some commenting on Facebook wondered if the spectrum had become "too wide" under the DSM-5, others felt he had done a disservice to more impaired kids—and their parents—by presenting autism as something less impairing than it can be on other points of the spectrum. Blogger Autism Daddy, who has a severely autistic, nonverbal 11-year-old son, wrote, "I am not thrilled about Jerry's autism self diagnosis. I think it's stuff like this that puts an even bigger divide between the low functioning community & the high functioning community, between the parents of severe kids, and the parents of aspie kids."
But there were many high-profile autistic adults who chose to embrace Seinfeld, with or without a diagnosis. As Jean Winegardner wrote on her blog Stimeyland, "It is very scary as an adult who has 'passed' for your whole life to come out as autistic. It is hard to tell people who might not believe you that you are autistic. I am absolutely positive that people have doubted my diagnosis, have said that I'm not autistic or not autistic enough. I am not willing to do that to another person."
Plenty of parents also applauded Seinfeld. Joel Manzer, who has an 11-year-old autistic son and is lead editor at Autisable.com, notes that whether the comedian is on the spectrum or not, "the fact that he thinks he is could actually benefit the community at large. Also, if having this self-diagnosis helps him address certain things about himself, all the better as well."
Christina Kotouc, whose 9-year-old son was diagnosed with autism spectrum disorder last year, writes that "the more high-profile people who say, 'hey, that's me,' or 'that's my kid,'" the better. She thinks it will help validate kids who are diagnosed with less severe autism. "Yes, it's a true struggle, not just made up," she writes. "And if they are positive about it, even better."View Comments | Add Comment
Lorraine Bracco at the Katz Memorial Lecture
Nov. 7, 2014 Harry Kimball
Yesterday the Child Mind Institute hosted a boisterous and at times somber discussion with actress Lorraine Bracco about living with dyslexia and, later in her life, with depression. The conversation with Dr. Harold Koplewicz was part of the 12th Annual Katz Memorial Lecture. Bracco talked about everything from growing up feeling "dumb" in school to how her experience with depression and treatment informed one of her most famous roles. In between, Bracco was remarkably candid about how, despite all her success, she wonders what would have turned out differently if her dyslexia had been recognized and treated at an early age.
"Social promotion—I think they invented that for me," Bracco joked about her poor showing in academic subjects as a child. "I was a jokester, I was humorous, but when it came to reading, writing spelling, I was a disaster. " She vividly described her angst about the written word. "When I was called upon to read, I was so anxiety ridden the words would just pop up and hit me," she said.
Thanks to a middle school English teacher who took an interest in her, she went on to become a model, a successful TV producer in France, and an actress on both sides of the Atlantic. But still that anxiety was hard to shake. She "couldn't go to an audition cold," she said—she "needed to see the pages beforehand, learn them by reading out loud." She was unsure about her future as an actress until that particular problem brought things to a head.
After a reading of a play by David Rabe, surrounded by an A-list group of actors, Bracco was mortified by her performance. Humiliated, she rushed out of the room with "tears popping out of my eyeballs like darts." The playwright caught up with her and wouldn't accept her poor opinion of her skills as an actress. "Lorraine, I enjoyed your reading," she recalls him saying. She screamed, "You're a liar! I can't read!" But Rabe was calm. "If I ever do this play, I want you to play this part," he said. And he did, and she did.
"I don't believe I would have tried any more to be an actor if it hadn't been for him," Bracco told Dr. Koplewicz.
The pain of growing up with an unidentified learning disability is still with her, despite the humor. "My daughter went to a Montessori in Tribeca, and they had what do you call it, 'creative spelling'?" Bracco said. "I would have been so good at that!" However, "even today I find myself wanting to use a word and I can't spell it so I have to dumb myself down. I think 'This is pathetic! I am pathetic, still!'"
That's why spotting problems early is so important to Bracco. "If I'd met you as a kid, wow," she told Dr. Koplewicz. "Where could I have gone? What would I have been instead of feeling like I'm always climbing out of a hole? I mean, you know, I could have been solid. I think I would have been challenged in a way that would have been intellectually stimulating. Instead of using humor to hide behind."
One issue where Bracco isn't left wondering what could have been is her depression and the successful therapy and medication treatment she (eventually) received. She went through a painful divorce, a long custody battle, a bankruptcy. "When I was going through all the bad stuff, people would say, 'Of course you were depressed after going through all that,' " she recalled. "But when I was on the upswing, I thought, 'Why am I not doing the happy dance? Something is really wrong. Let's figure this out!'"
Her positive experience with depression treatment encouraged her to seek the role of Dr. Melfi in The Sopranos—with a caveat. She wanted to make sure the part wasn't designed to be a negative stereotype. Bracco recalled telling creator David Chase, "I've been in therapy now for awhile, I've been on medication, and it's been incredibly helpful. And I don't want to make a mockery of it—I don't think that's fair."
That instinct, to present the truth of mental illness and treatment, continues. "What shocks me the most is how many people come up to me and can't believe that I've been in therapy and have been on medication," Bracco said. "They whisper, 'You take medication? I take medication!' All right! Why are we whispering? It's the big secret, the big stigma. It's a terrible thing. When I think how many people suffer with depression it's heartbreaking to me."
Dr. Koplewicz Honored as a WebMD Health Hero
Nov. 7, 2014 Caroline Miller
WebMD hosted its first live event to celebrate its annual Health Heroes awards last night, and Dr. Harold S. Koplewicz was among the winners, accepting a 2014 Health Hero award for his activism on behalf of children with psychiatric and learning disorders.
The evening was hosted by an ebullient Robin Roberts, the Good Morning America co-host, who responded to a standing ovation by saying, "You make it worth staying up past my bedtime!" The Health Heroes winners included Michael J. Fox, Martha Stewart, the Cleveland Clinic's Frank Papay, Zarin Rahman, and Carson Daly.
In accepting his statuette, which was presented by TV personality Beth Stern, Dr. Koplewicz quipped, "How awesome! It looks like an Oscar and it's from Howard Stern's wife."
Getting serious, Dr. Koplewicz noted that the people he perceives as real heroes in his work are the children themselves. "When I think about the children and adolescents who struggle with psychiatric or learning disorders, it's hard to feel like a hero," he said. "Kids with depression or social anxiety or dyslexia or ADHD often have to fight so hard every day to do things the rest of us take for granted. That's courage—that's heroism."
Dr. Koplewicz challenged the notion that mental illness is a character flaw. "Psychiatric and learning disorders aren't caused by weakness, but they are overcome by strength," he said. He thanked WebMD for the award, which comes with a $10,000 donation to the Child Mind Institute. "Together we can get more kids the help that can literally change lives." (Click here to see the video WebMD presented about Dr. Koplewicz and the Child Mind Insititute.)
Michael J. Fox was given the Hall of Fame award for his work on Parkinson's research and advocacy. Martha Stewart was recognized for opening the Martha Stewart Center for Living at Mount Sinai Hospital, to provide holistic heath care for seniors. Frank Papay was cited for pioneering a new surgical approach to treat cluster and migraine headaches. Zarin Rahman, a Harvard student, was recognized for her study, as a high schooler, of the effects of computer and cellphone use on teens' sleep, mood, and academic performance. And Carson Daly was cited for the Shine a Light program that involves school children in Crown Heights, Brooklyn, in gardening.
In a video interview with Robin Roberts, Fox said he doesn't see himself as a hero.
"At a time when people are putting their lives on the line particularly for country and for freedom—those are heroes," Fox said. He said he shared the award "with my fellow patients, and with the countless researchers who've jumped on board and are dedicating their careers to that mission."View Comments | Add Comment
Not So Modern Family
Nov. 4, 2014 Rachel Ehmke
The era of asylums is long gone—they started closing in the US in the late 60s and 70s—but One Flew Over the Cuckoo's Nest-style psychiatric hospitals were alive and well in a recent episode of Modern Family. It was the Halloween episode, and mom Claire Dunphy decorated her yard as a "haunted insane asylum" with her kids playing "deranged mental patients." One was chained to a hospital bed and another was wearing a straitjacket. She was dressed as a "sadistic nurse" and wanted her husband to be a "demented doctor."
Claire was thrilled with her decorations until she learned she upset a new neighbor who "spent six months in a cuckoo farm in Nevada." Later it's revealed the neighbors are just joking:
- "She's never been to a nut house!"
- "Yeah, I ain't crazy!"
(By the way the neighbors are supposed to be ignorant Southern trailer trash-another worn out trope.)
It's all played for a joke, of course, but we're not finding it very funny. Mental illness really is scary to a lot of people in this country. A large part of that fear is rooted in how our culture talks about mental health, and that certainly includes prime time television shows like this one. It's all the more frustrating because Modern Family has been widely lauded for its updated take on a traditional American family. Clearly their commitment to diversity only extends so far.
After watching the episode Liza Long, writer and mother who learned first-hand the cost of stigmatizing mental illness when her son developed bipolar disorder, wrote, "We talk a lot about the word 'stigma' when we talk about mental illness. But what we really mean is 'discrimination.' " Blogger Pete Earley has written an open letter to Disney/ABC protesting the episode, and Janine Francolini, founder of the Flawless Foundation, called it "a misguided, ignorant and prejudiced piece about people living with mental illness" in a blog on the Huffington Post.
In her blog Long also points out that one in five kids in the US will have a serious psychiatric disorder at some point before age 18. A real modern family should acknowledge how common mental illness is-not use it as a tired punch line.View Comments | Add Comment
A 'Natural Fix for ADHD'
Nov. 3, 2014 Caroline Miller
There's an interesting and nuanced piece about ADHD in the New York Times that's worth reading—nuanced, that is, except for the headline, A Natural Fix for ADHD, which is quite misleading. It promises something the author, Richard Friedman, doesn't deliver, unless you consider a "natural fix" for kids who have ADHD to time-travel back to the Paleolithic era
Dr. Friedman speculates that the behaviors associated with ADHD would have been advantageous in a nomadic, pre-agricultural society, when having a brain hardwired for seeking novelty and excitement could make you a highly successful hunter. Fast forward to the 21st Century and you have an environment in which succeeding in life requires sitting still in elementary school, passing exams in high school, taking in lectures in college, and (for many people) doing a job in an office.
Dr. Friedman's piece is good because it explores the research about what's going on in the brain that generates restlessness and the need people with ADHD have for a higher level of stimulation than other people need to stay engaged. But it also recognizes the huge cultural changes—especially in school and work—hat are contributing to the sharp rise in ADHD diagnoses.
Dr. Friedman mentions one patient who found that a desk job at an ad agency was intolerable, so he "threw himself into a start-up company, which has him on the road in constantly changing environments. He is much happier and—little surprise—has lost his symptoms of ADHD."
He suggests that, similarly, some school environments are better for kids with ADHD. "In school, these curious, experience-seeking kids would most likely do better in small classes that emphasize hands-on-learning, self-paced computer assignments and tasks that build specific skills," he writes. Would that more kids with ADHD have access to that kind of school.
Still, there's no "natural fix." Dr. Friedman, who is the director of the psychopharmacology clinic at the Weill Cornell Medical College, recognizes that stimulant medication is a huge help to some, citing one patient, a student, who finds that it enables her to focus in lectures—something that she isn't able to do without it—and avoid resorting to alcohol to relieve boredom.
For kids with ADHD the real "fix" is a combination that's tailored to each child, and it might include support for staying organized, more exercise, medication, and, as ADHD activist David Flink writes in Thinking Differently, helping each child figure out what his strengths are, as well as his weaknesses. As Dr. Friedman concludes:
This will not eliminate the need for many kids with ADHD to take psychostimulants. But let's not rush to medicalize their curiosity, energy and novelty-seeking; in the right environment, these traits are not a disability, and can be a real asset.View Comments | Add Comment
'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