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Monday, April 14th, 2014
As part of Autism Awareness Month, Parents and Easter Seals teamed up to bring our Facebook fans expert answers to their biggest questions about autism spectrum disorders during our Facebook chat. Dr. Patricia Wright, a board certified behavior analyst and Easter Seals’ National Director of Autism Services, and 2014 Parents Social Media Award Winner Autism Daddy, a 44-year-old blogger and dad to a 10-year-old son with severe/classic autism, shared their expert opinions on all things autism.
Note: Some responses have been edited for clarity.
“What do you wish more people knew about autism spectrum disorders?”
Dr. Wright: I wish that all parents knew how important it is for EVERY child to be screened for autism and other developmental disabilities as recommended by the American Academy of Pediatric Guidelines. For autism, that is at 18 months and again at 24 or 30 months. For society as a whole, I wish that people could meet the many adults living with autism who are happy, contributing members of society. I think this would leave to greater acceptance of people living with autism and increase the opportunities for children and adults with autism to have greater success in life.
“What are your thoughts on the rising numbers in children with autism? What do YOU believe is a factor?”
Dr. Wright: “There is certainly lots of discussion about the rising prevalence. I have focused my career on supporting people who have already been diagnosed. I do look to the Centers for Disease Control and Prevention for information and there is some great research being done at places like UC Davis that are trying to answer this important question.”
“My son was diagnosed with an autism spectrum disorder at 22 months. He is now 25 months and with the help of speech and Applied Behavioral Analysis therapies, he went from completely nonverbal to speaking more than 40 words appropriately (as well as better eye contact and interaction). I’ve heard of, ‘falling off the spectrum.’ Have you seen this happen? Is it really possible?”
Dr. Wright: “The most recent data reports that approximately 13-17 percent of children who are accurately diagnosed with autism lose their diagnosis.”
“Is there a guide of the actual spectrum, from severe to non-severe?”
Dr. Wright: “Autism is diagnosed via observation and interview. Autism diagnostics are typically conducted by a team of professionals which might include a physician, psychologist, speech-language pathologist, occupational therapist, and others as appropriate. There are two ‘gold-standard’ tools: the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R). These are the best tools we have. The ADOS is an activity based assessment that involves interaction between the parent and the assessor. The ADI is an interview conducted with the parent. It is important to have professionals engaged in the assessment that are trained in autism diagnosis and using good assessment tools like the ADOS and ADI-R. A diagnosis is often a multi-step process and based upon the unique needs of the child there may be other assessments that need to be conducted such as a hearing test, genetic testing and others. Your healthcare provider should lead you through the diagnostic process.”
“Different doctors tell us different things about where our son is on the spectrum. I’ve been told he can’t be because he speaks and is too social. He has a very low IQ. So is he what some would say high functioning?”
Dr. Wright: “Speaking and being social aren’t necessarily rule-outs for an autism diagnosis. An autism diagnosis is conducted through behavioral observation of the child and interview with parents. Autism diagnostics are typically conducted by a team of professionals which might include a physician, psychologist, speech-language pathologist, occupational therapist, and others as appropriate. There are two ‘gold-standard’ tools the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R). These are the best tools we have. The ADOS is an activity based assessment that involves interaction between the parent and the assessor. The ADI is an interview conducted with the parent. It is important to have professionals engaged in the assessment that are trained in autism diagnosis and using good assessment tools like the ADOS and ADI-R. A diagnosis is often a multi-step process and based upon the unique needs of the child there may be other assessments that need to be conducted such as a hearing test, genetic testing and others. Your healthcare provider should lead you through the diagnostic process.”
“What has been the most helpful resource for you as a parent of a child with autism?”
Autism Daddy: “Facebook! Seriously when my son first was diagnosed, it was pre-Facebook and I went to a few support group meetings in person. The parents were all at different parts of their autism journey, and most were higher functioning than my son. I found the support group meetings frustrating and uninformative. The great thing about Facebook is that you can find the specific support group that fits your needs. Low-functioning, Aspie’s, non-verbal, autism and epilepsy, etc.”
“What do you wish more people knew about what it’s like to raise a child with autism?”
Autism Daddy: “That it can be very hard, exhausting, and isolating. That’s not easy to hear, I know, but it’s the truth. Though the autism parents you know may be putting on a brave face and saying they’re fine and don’t need help, offer to help them anyway. And all you autism parents out there: stop acting so damn strong. I don’t want pity as much as the next guy, but there’s no shame in saying you are overwhelmed and need help.”
“What do you find is the most effective way to encourage your child to communicate with you—and others?”
Autism Daddy: “My son is a tough customer when it comes to communicating, but the iPad is starting to work its magic. He’s able to navigate the iPad like a champ, which is great since he doesn’t have fine motor skills. He likes a lot of the toddler apps like Monkey Preschool Lunchbox and Elmo’s Numbers & Letters.”
“My 3 ½-year-old daughter was evaluated a few months ago. They told me she’s not autistic, yet she’s on the spectrum scale. She tells me what she needs and wants, knows how to count to 20, is familiar with her colors, etc. How do I explain or make people aware when they wonder why she doesn’t talk as well as other kids her age?”
Autism Daddy: “Don’t get bogged down in the labels. Maybe she’s autistic, maybe she’s not. The key is that she’s young, and she needs a little extra help. When people ask, just say she’s a bit speech delayed. If the experts tell you she’s on the spectrum, don’t freak out. Use that diagnosis to get extra services like speech and occupational therapy.”
“Do they always flap their hands and walk on their tiptoes? Can they be on the lower end of the spectrum if they don’t do this but have other signs?”
Autism Daddy: Flapping and toe walking are just a few of the “stims” that a lot of kids with autism do, but not all. Just because they do or don’t doesn’t indicate their severity.”
Dr. Wright: “Autism is a spectrum disorder, so every child presents symptoms in their own unique way. Not every child with autism has toe-walking or hand-flapping and these behaviors in isolation would not indicate a severity level.”
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Monday, April 14th, 2014
Last week, I attended the 5th Anniversary Celebration of the Autism Science Foundation (ASF), which provides funding for scientists who are doing cutting-edge research. To mark the occasion, ASF held a Ted-Style symposium, at which leading experts shared insights on the causes, diagnosis, and treatment of autism. Here’s what I found to be most interesting.
Autism organizations that fund research need our support because the government can’t foot the bill. “We love you, but we have no money,” Congress recently told Dr. Thomas Insel, director of the National Institute of Mental Health (in so many words). His response: “Research is an investment, not a cost.”
Although children who are diagnosed with autism at a young age are most likely to benefit from early intervention, only 20% of children are diagnosed before age 3. A study by Dr. Ami Klin, director of the Marcus Autism Center at Children’s Healthcare of Atlanta, found that babies and toddlers who don’t make eye contact with adults (and instead look at an adult’s mouth) are more likely to develop autism. This finding could pave the way for a simple and cost-effective way to screen all young children for the risk of autism—so that treatment can begin before 24 months of age.
Girls need a greater “genetic hit” than boys in order to develop autism. Dr. Joseph Buxbaum, head of the Laboratory of Molecular Neuropsychiatry at Mount Sinai School of Medicine, in New York City, explained that autism may be an X-linked disorder, which would help explain why it is more common in boys. Girls have two X chromosomes, so if the mutated genes that cause autism are on the X chromosome, a girl could also have a “healthy X chromosome” that counters the influence of the X chromosome with mutations, said Dr. Buxbaum. Boys, on the other hand, have one X chromosome and one Y chromosome. Based on the latest genetic discoveries, researchers think it’s possible to use animal studies to develop new drugs that can affect the underlying physiology of autism.
Parents should come together to fight for evidence-based interventions in schools, not just more hours of therapy and 1:1 support for students. Dr. David Mandell, associate professor of psychiatry and pediatrics at the University of Pennsylvania’s Perelman School of Medicine, has studied how well public-school teachers implement the most effective treatments for children with autism. He said that it’s crucial for school administrators to provide ongoing support for classroom teachers who are using these well-studied interventions and that teachers need to be rewarded for adhering to them.
It takes brains to solve autism. This is a difficult topic to discuss, but researchers need to study the abnormalities in the brains of people with autism in order to speed us along to a cure, said Dr. David Amaral, a research director of the MIND Institute at University of California, Davis. Scientists made major advances in the understanding of Alzheimer’s disease by studying the brains of patients who had died of the condition, and those findings led to the development of all the current drugs that are helping patients. Autism BrainNet is a new initiative that will collect brain tissue to collaborate on groundbreaking brain research, and “It Takes Brains” is an outreach program that will encourage parents to register to donate their child’s brain to help scientific research.
Studies have not shown that any alternative medicine is beneficial for autism. Supplements are not regulated by the FDA, and a recent study found that close to 9 percent of parents are giving their child treatments that are considered potentially unsafe, invasive or unproven. Dr. Paul Offit, a professor of pediatrics at the University of Pennsylvania, summed up the bottom line: “If an alternative medicine works, then it’s a medicine, and if it doesn’t, it is not an alternative.”
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Photo of DNA via Shutterstock
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Thursday, April 10th, 2014
The number of mothers in the United States who stay at home is rising after decades of declining, according to a study released on Tuesday. In 2012, 29% of moms did not work outside the home, compared to 23% who did so in 1999. This news might seem surprising considering the can’t-miss-it “Lean In” campaign from Sheryl Sandberg, COO of Facebook, and the fact that women made up 46.9% of the workforce in 2012. Are more working moms deciding to take a step back? Not so fast.
This upward trend is not necessarily the result of society reverting back to the old-fashioned view of traditional parental roles, but rather it’s the result of the current economy and growing minority populations in the U.S. As NYTimes.com reports:
The report found that, in 2012, 6 percent of stay-at-home mothers said they stayed at home because they could not find a job, compared with just 1 percent who gave that answer in 2000. And it found that a third of stay-at-home mothers live in poverty, while 12 percent of working mothers live in poverty.
America’s changing demographics might also play a role in the study’s results. Asian and Latino mothers, two rapidly growing populations in the U.S., were more likely to stay at home with their children than white and black mothers.
Education level is also a factor, says the NYTimes:
The report found that less educated women were more likely to be stay-at-home mothers; 51 percent of mothers who had not completed high school did not work outside the home, while 21 percent of mothers who are college graduates stayed at home with their children. Just 5 percent of married stay-at-home mothers with working husbands have at least master’s degrees and family incomes exceeding $75,000.
Whether choosing to stay home with your children is based on your financial situation, parenting philosophy, employment status, or heritage traditions, it’s a personal decision. Ultimately, you know what’s the best choice for you, your family, and your career path.
Are you thinking of staying at home? Use Parents.com’s Stay At Home Calculator to find out if you can afford not to work. You could also find a happy medium and work part-time. Know that whatever decision you make will be the best choice for your family; and don’t forget to consult your partner before making the final verdict.
Image courtesy of Shutterstock.
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Thursday, April 3rd, 2014
The New York Mets are—and I say this with all the love and frustration of a lifelong fan—a woeful team that even the most optimistic among us expect to have a lousy year. So, of all the players on the team, why is second baseman Daniel Murphy taking heat from sports commentators? Because he missed the first two games of the new season, taking a paternity leave to be there for the birth of his son.
Yes, you read that right. Two games. To be at the birth of his son. And here’s what that oh-so-lengthy absence left some well-known sports-radio personalities saying, according to the New York Daily News:
“Assuming the birth went well, the wife is fine, the baby is fine, 24 hours and then you get your ass back to your team and you play baseball.”
And from another: “One day [off] I understand. And in the old days they didn’t do that. But one day, go see the baby be born and come back. You’re a Major League Baseball player. You can hire a nurse to take care of the baby if your wife needs help.”
For dads, how long to take off after baby’s birth can be a tough call. Despite the fact that the Family and Medical Leave Act guarantees up to 12 unpaid weeks of leave for men and women alike, not many fathers take more than a few days off when their little one arrives. There’s pressure from employers to contend with, and the self-imposed pressure (real or imagined) of wanting to be seen in the best light at work, not to mention cultural forces about men’s roles to content with. And, of course, unpaid leave is an economic pressure for nearly everyone and an impossibility for many—major-league ballplayers excluded.
To slam Murphy’s two-game leave as treasonous is absurd. Here’s what he had to say to ESPN about the brouhaha, referring to his wife and his desire to be there for her:
“It’s going to be tough for her to get up to New York for a month. I can only speak from my experience — a father seeing his wife – she was completely finished. I mean, she was done. She had surgery and she was wiped. Having me there helped a lot, and vice versa, to take some of the load off…. It felt, for us, like the right decision to make.”
While he was away, I am sure Murphy was thinking of his team often and even missing them, just as he will be thinking of his newborn back home as he dedicates himself to his team for the remainder of the season. Finding the right work-life balance is no easier for a multimillionaire baseball player than it is for you and me, and we all feel torn between our commitments to our families, our jobs, and ourselves.
I struggled with these issues as well. Taking two weeks off when each of my daughters was born was a no-brainer. But now, as my wife heads back to work after her own five-month maternity leave, I am on the threshold of a longer paternity leave—five weeks, starting Monday. Making the decision to take the time off involved a lot of intense discussions with my wife and internal soul-searching about what is most important to me and how I want to spend and remember this time in my life. Stepping back, even for a few weeks, from a job that is busy and that means a lot to me, is scary, and it remains something that is never easy.
Far from criticizing Murphy’s leave, we should be celebrating it. The more of us who take time to be with our families, the better it is—for ourselves, our kids, and our wives or partners. And the more men who take paternity leave, the better it will be for all new fathers, because over time, it will become normal and expected, not something to criticize or even remark on. Especially seeing athletes do it, those most manly of professionals, will hopefully encourage others to do the same. Yes, there are occasionally things that are more important than supporting the team. Instead of criticizing, let’s look to a future in which taking time to be with our kids is the norm, not the exception, and in which a mere two days is laughably short.
See you in May. Until then, I’m off daddying.
Murphy and his wife named their newborn Noah. Try our Baby Name Finder to discover the perfect name for your newest addition!
Image: New York Mets Daniel Murphy and wife Victoria Tori Ahern attend the Aces, Inc. All Star party at Marquee on July 14, 2013 in New York City via Shutterstock.
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Wednesday, March 26th, 2014
About a year ago, many of my friends, along with a certain segment of the Jewish world, were excited about the publication of a new children’s book, an event that is usually so routine it rarely elicits notice, let alone comment. This book, however, was different: The Purim Superhero features a brother and sister who live with their two dads. It is billed as the first Jewish kids’ book to feature same-sex parents or any type of LGBT characters, and was on Parents.com’s recently published list of great children’s books with same-sex parents. (The title refers to a Jewish holiday that, coincidentally, was celebrated earlier this month.)
I recently thought of the book and the enthusiasm it provoked when I read about a study showing just how few newly published children’s books portray characters from racial and ethnic minorities: Of 3,200 books published in 2013 and studied by researchers at the Cooperative Children’s Book Center School of Education, University of Wisconsin-Madison, they found only 93 about black characters; 57 about Latinos; 69 about Asian; and 34 about American Indians.
That amounts to… not a lot.
This is a shame on so many levels. Most obviously, for kids who themselves belong to any of these terribly underrepresented groups—but also for all of us. The problem with these stats is the flip side of the excitement my friends and I felt for The Purim Superhero. The stories that we tell ourselves—and certainly the stories we read to our children—matter. Deeply. They help us understand and make sense of our world, they help us define ourselves and our values, they help us appreciate how others feel and how to put words to our own feelings. It is not just a matter of seeing myself in these stories, it is a matter of seeing my world—and the world I want to live in.
The American family is changing, fundamentally, rapidly. Whatever the world of our parents and grandparents and great-grandparents looked like, today’s world, and certainly tomorrow’s world, will look very different. I want to be able to help my children understand, value, and cherish other people and other families, regardless of what they look like, where they come from, how they worship, or who they love. If the kids’ book world cannot capture in any adequate way the range of racial and ethnic diversity among American families, what hope is there for depictions of newer and less traditional family arrangements?
Books are a big way to help us accomplish that. Without them to aid us, the task is that much harder.
As our values and the realities of our world change over time, so should our books, which can help our kids feel comfortable with and accepting of ideas–and people and family arrangements–that are new, different, and perhaps at first unusual to them. In addition to its two-daddy household, The Purim Superhero features a woman rabbi as the spiritual leader of their synagogue. Depicting a woman in the historically male role of rabbi would have been remarkable a couple of generations ago, and virtually unthinkable before then. Today it is hardly mentioned, if at all, in coverage of and discussions about the book. My kids shrug at it, just as they shrug at the idea of a family with two daddies, and that’s in part thanks to the book they’re asking me to read again and again.
It’s important to note that The Purim Superhero wasn’t created in a vacuum and it wasn’t a happy accident of writer meets publisher. It was the product of a writing contest held by Keshet, an advocacy group for LGBT Jews (the name means “rainbow” in Hebrew)–which saw the contest a great way to find, publish, and publicize an engaging book with the character, themes, and message of so important to the organization.
Perhaps it’s time for others to follow that model. Strangely, the University of Wisconsin-Madison study found that the number of children’s books featuring characters from the groups it studied dropped over the past decade.
We’re going the wrong way. It’s time for our kids’ books to look like America.
Plus: What career will your child have? Find out!
Image of girl reading book via Shutterstock.
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