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Child Development ’ Category
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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Friday, April 11th, 2014
On Monday, April 14, HBO will air a 40-minute documentary called “One Last Hug: Three Days at Grief Camp.” Even if you don’t have a grieving child in your life, it’s so worth watching. I came away with a much better understanding of what a child goes through when a loved one dies, and how crucial it is that every child has the chance to speak openly about his feelings.
In the movie, we watch as kids ages 6 to 17 attend Camp Erin Los Angeles. Camp Erin is a program started by baseball player Jamie Moyer and his wife Karen, in honor of a teenage fan named Erin Metcalf, who died of cancer when she was 17. Camp Erin Los Angeles is run by the amazing staff of Our House Grief Support Center, led by Lauren Schneider, LCSW, the clinical director of child and adolescent programs. Schneider explained the important goal the movie accomplished: “It conveyed the fact that children are completely capable of processing grief–cognitively and emotionally–and so they need opportunities to do that. A lot of people think that kids need to be sheltered and even excluded from important deaths in the family. But children benefit from the process of saying goodbye and engaging in mourning rituals.” And that’s exactly what the 43 Camp Erins located all over the country–which children attend for free–set out to do.
The film opens with a beautiful ceremony where each child walks up on a stage, announces her name and the name of her loved one who died, and places a photo of that person on a giant “memory board.” (When one young boy sobs while trying to say his father’s name, you will too.) We see other important activities, such as a grief hike where children look for rocks painted with key words such as “confused” and “angry,” and then discuss how that emotion may apply to them. On the last night, the powerful Luminary Ceremony allows children to say goodbye to their person by writing a message or drawing on a lantern that’s lit and set adrift across the pool. (That’s what’s depicted in the photo above.) This is a crucial exercise, because of the 150 children at the camp, only a very few actually got to say that goodbye in person.
But it’s not all tears; the program is designed to include many lighter moments and even has an entertaining closing ceremony for the families that arrive on the final day. And when the children leave, they seem to feel lighter, too. They’ve finally had a chance to meet children who are feeling the same kind of pain they do. They don’t feel so alone, so different from their peers. They now have the words to express their grief. And as we see during the closing credits, when some of the campers’ parents describe the difference in their children after attending Camp Erin, they are truly on a path to healing.
Click here to find a Camp Erin near you or learn more about The Moyer Foundation.
Photo credit: Courtesy of HBO.
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Wednesday, April 2nd, 2014
There are so many important issues surrounding autism: early detection. Proper diagnosis. Early intervention. Research-proven treatment. Bullying. Nutritional complications. Safety. At Parents, we’ve covered them all. But there was one angle we hadn’t addressed, and it was the impact the diagnosis has on friendships between parents. Writer Jamie Pacton (at right in photo) pitched us a moving essay about her own story: Ever since eighth grade, she and her best friend Ashleigh (at left) had been on parallel tracks, and even ended up living in their hometown after marriage and getting pregnant at precisely the same time. They each gave birth to a son within four days of one another. But that’s where the similarities ended, because Jamie’s son, Liam, would go on to be diagnosed with autism, and Ashleigh’s would not.
The strain this put on their relationship was immense. It took Jamie quite some time to come to terms with Liam’s diagnosis and all it entailed, and she found herself increasingly jealous of the kind of mothering experience Ashleigh was having. Ashleigh, meanwhile, was often at a loss for words–or the right words–when trying to discuss Liam’s challenges. If you read her touching, honest essay, you’ll learn how she and Ashleigh handled it.
It obviously resonated with parents, because Jamie has heard from many who are in a similar situation. One mom tracked down Jamie’s email to thank her for the article and let her know how much she could relate. She described how, when trying to get out of a reunion with college friends, she tearfully burst out, “I don’t want to see how well your kids are doing and resent you! I’m sorry!”
Thankfully, Liam, who is nearly 6 and nonverbal, is making huge strides of late. He went to the zoo last week and for the first time, he didn’t need a stroller–he was able to walk through the whole zoo, he rode a pony and a train, and was engaged with the animals. And in another first, in January he used his Yes/No board to answer two questions he’d never answered before: “Do you love your Mommy?” “Do you love your Daddy?” I think you know what the answers were, and what it meant to Jamie and her husband.
For ways to help friends understand Autism, download Autism Speaks Family Support Took Kit.
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Tuesday, April 1st, 2014
Editor’s Note: In an ongoing series, Dr. Harley A. Rotbart, a Parents advisor, will be guest blogging once a month with advice, tips, and personal stories on how parents can “savor the moment” and maximize the time they spend with kids. Read more posts by Harley Rotbart on Goodyblog and on Parents Perspective.
Have you ever wondered what our pre-verbal infants and young toddlers are really thinking when we bundle them up, strap them in, and drag them along with us as we go about performing our adult to-do lists? As kids get older, of course, we can explain our plans for their day. Although they may not always agree, at least they know what’s in store for them: “We’re going to the mall,” “We’re dropping your sister at a friend’s,” “We’re visiting Grandma.” And they may answer, in adorable toddler Tarzan-speak, “Want ice cream!” “Need potty!” “More ice cream!” Or, simply, and not so adorably, “NO!!” Some days they might end up on the supermarket floor throwing a tantrum: “DON’T WANT TO!!” For better or worse, when they can speak, at least we know their opinions on the matter at hand.
But in the more tranquil months before they communicate with words, it’s only their gestures, body language, and the tone of their whimpering (or shrieking) that give us clues to their innermost feelings about…well, about everything! In particular, my wife and I were always curious about what our little ones thought we were doing when we packed them into a baby carrier, backpack, or car seat and set them in motion. It must have been especially weird for them when they were facing backward, looking at our chests or at the car seatback. What was it like for them to be helpless hostages to our adult whims, never knowing when each journey would begin, how long it would last, or where it would end?
I’ve come to believe that kids store up their responses to the ways we manipulate their lives until the day they have just enough vocabulary to burst forth with a revelation. Case in point: our youngest son’s first sentence, uttered into a plastic toy telephone while strapped into his car seat in the back of the minivan, was, “Driving-car-pool-be-little-late.” Or perhaps it wasn’t a sentence at all. It actually came out sounding like he thought it was one really long word, a “word” he’d undoubtedly heard his parents use far too often. He had accompanied his older siblings and their friends on the ride to school with us so many times that he learned to associate the term “car pool” with turning right-left-right-right-left after leaving the driveway. As it turns out, he knew where he was headed long before he could speak. And when he finally could speak, it all came out at once: “Driving-car-pool-be-little-late.”
Not long after that, he surprised us again with his growing car seat lexicon when, as we pulled into the hardware store’s parking lot, he shrieked, “NO MORE ERRANDS!!”
Dr. Harley A. Rotbart is Professor and Vice Chairman Emeritus of Pediatrics at the University of Colorado School of Medicine and Children’s Hospital Colorado. He is the author of three books for parents and families, including the recent No Regrets Parenting, a Parents advisor, and a contributor to The New York Times Motherlode blog. Visit his blog at noregretsparenting.com and follow him on Facebook and Twitter (@NoRegretsParent).
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child development, harley rotbart, harley rotbart series, no regrets parenting, parenting, parenting style, talking, thinking, vocabulary | Categories:
Big Kids, Child Development, The Parents Perspective, Toddlers