Posts Tagged ‘ Asperger’s Syndrome ’

Parenting a Child With Asperger’s (When You Have It, Too)

Tuesday, March 12th, 2013

This post comes from writer Jamie Pacton, a professor and writer in Milwaukee. She’s also the mom of two sons, 4-year-old Liam, who has severe autism, and 2-year-old Eliot. She was quite moved by a new book about what it’s like for a father who has Asperger’s syndrome to raise a son who also has the diagnosis, and wants you to know about it, too.

New York Times-bestselling writers John Elder Robison and his younger brother, Augusten Burroughs, had a rough childhood. Their challenges with an abusive father and mentally ill mother are detailed in Burroughs’ famous book Running with Scissors. In Robison’s first memoir, Look Me in the Eye, and its companion book, be different, Robison discussed some of the hardships of his childhood, but his real focus was to explain how having Asperger’s syndrome helped him achieve amazing things (like designing the rocket-launching guitars for the band KISS, to name one example from his very interesting life). In his latest memoir, Raising Cubby: A Father and Son’s Adventures with Asperger’s, Trains, Tractors and High Explosives, Robison turns away from his rock-and-roll past and sheds some light on how having Asperger’s helped him cultivate an outlaw style of parenting.

Raising Cubby is, as Robison told me during an interview, simply the story of “how I went down to the kid store, picked out my kid, Jack (Cubby), and got him to the age of 17, when Cubby was almost thrown into a maximum-security prison for being a Boy Scout-genius with a chemistry set who earned the ire of the local prosecutor.”

This father-and-son story is by turns hilarious, poignant, weird, shocking, and inspiring. It’s full of unlikely parenting adventures: taking a preschooler to power plants, coal mines, and train yards (Cubby piloted his first diesel engine before most kids ride a bike); driving Chairman Mao’s refurbished Mercedes to a car show; inventing an alternate history for Santa Claus; raising a genius who taught himself to read using just the the Harry Potter books, but who later dropped out of high school; and, also fighting an epic legal battle to prove that Cubby was just a harmless geek, not a nefarious criminal.

This book will make you laugh, and make you think about how to parent a child who doesn’t fit into the neat categories we expect our children to occupy.

There are also practical reasons to read and share this book. You’ll learn the recipe for an infallible “monster spray” to soothe toddler night terrors. You’ll put the book down convinced that your kid needs to sign up for off-road Land Rover Driving School before he or she gets their license. And, perhaps most importantly, you’ll learn the secret to getting your kids to call you by the best title ever: “wondrous dada” (or, as I’m teaching my sons, “wondrous mama”).

Image courtesy of Crown Publishing Group.

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Is Autism Being Diagnosed Too Late?

Thursday, March 29th, 2012

That’s the question you can’t help but ask when you read the latest news from the Centers for Disease Control about the prevalence of autism. The alarming figure so many of us are familiar with–1 in 110 children have autism–is actually rising. The number is now 1 in 88. (And when you look at the number of boys who are found to have autism, it’s frighteningly higher: 1 in 54.)

The CDC’s data reports that the median (not average) age at which children are diagnosed with autism is 48 months. It’s 53 months for autism spectrum disorder/pervasive developmental disorder, and 75 months for Asperger disorder. Considering how greatly kids can benefit from early intervention, those ages are worrisome. Our friends at Easter Seals raise concerns: “We are completely missing the mark on early diagnosis, given that autism can be accurately identified at 24 months,” says national director of autism services Patricia Wright, Ph.D., MPH. “We have a lot of work to do in the area of early identification.”

To that end, Easter Seals’ Make the First Five Count initiative, with help from CVS Caremark, has launched a free online screening tool that gives all parents of children up to 5 years old access to Brookes Publishing’s Ages & Stages Questionnaires. This tool does not diagnose (that’s important to note), but it allows you to figure out whether your child is developing appropriately and help you pinpoint concerns you may want to discuss with your child’s doctor. It only takes between 10 and 20 minutes for you to answer the questionnaire and you’ll have results emailed to you within two weeks. Please share the link with other parents of the 5-and-under set, and we can help lower that too-old age of diagnosis.

Photo via Shutterstock.

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Voices of Autism: ‘Really Grateful She Is Mine’

Sunday, April 10th, 2011

Every day throughout April–Autism Awareness Month–we will be featuring a different reader-submitted story about living with autism. Today’s story was written by the mother of a 4-year-old who asked that their names not be used. She is the author of the blog Spectrummy Mummy’s Blog:

The most important thing you need to know about my kid with autism, is that she is just a kid. Like many 4-year-old girls living in the U.S., she loves Sesame Street, Disney Princesses, dressing up, and anything pink. More than anything in the world, I just want her to have the full experience of being a kid. She deserves that.

Like any ordinary girl, she wants friends, but she has some challenges that sometimes impact that. She is diagnosed with Asperger’s Syndrome, which means that her language and cognitive abilities are less impaired than other children on the autism spectrum. However, she still has huge gaps in her abilities. She finds it difficult to maintain the back-and-forth of a conversation. Taking turns and waiting her turn are also challenging for her. Of course, these are the very skills a child needs to make friends.

As with many others on the autism spectrum, she also has some differences in her sensory processing. All her senses are a little off, and this makes her behavior confusing to interpret. Often she will bounce up and down, spin around, or flap her hands to get extra input to her body. She has difficulty processing sounds, and sometimes noises are too loud, or speech is jumbled up and impossible for her to understand. Sometimes she is overwhelmed by all this input, and it causes her to lose control and have a meltdown. She isn’t throwing a tantrum, or being disobedient. She is a child who just can’t take any more.

I’ve been humbled by my daughter’s determination to learn things that don’t come naturally to her. Tiny milestones that would have been ignored are celebrated for the small miracles that they are. I don’t take anything for granted. She inspires me to make the world a better place for her to live in.

When she was first diagnosed, I felt too ordinary to raise such an extraordinary child. I began reading blog posts written by other parents about their amazing children, and I found solace in knowing that I wasn’t alone. Eventually I began a blog myself to tell the world about my daughter and about the joys and challenges of raising a child on the spectrum. Writing has not only helped me to advocate for her and those like her, but it has also introduced me to an incredible community of dedicated families just like ours.

She is just a kid, but an extraordinary kid. A kid like 1 in 110. She could be your daughter, your niece, your child’s friend or classmate. But I’m really grateful that she is mine.

To read previous stories in this series, click here. For instructions on how to submit your story, click here.

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Do You Know a Family Affected By Autism?

Saturday, April 2nd, 2011

With 1 in every 110 children diagnosed, chances are high that you do. And though today is World Autism Awareness Day, it’s a good time to remember that these families can use our support and understanding all year long. That can come in many forms: It might mean attending a walk, such as the ones sponsored by Autism Speaks that are taking place all spring. It might mean simply inviting a child with autism over to play, or including him or her in your own child’s birthday party. Or it might mean supporting a company that promotes the cause. Lindt USA, the chocolate makers, is one such company. Among their initiatives: For every free e-card you send from, Lindt will donate $1 to Autism Speaks.

Earlier this week, two of us here attended an awards luncheon sponsored by Lindt. Every year Lindt recognizes three Unsung Heroes—people who are making a positive, unique, and lasting impact in the lives of families affected by autism—with a trip to New York City and a $5,000 prize. (They’re pictured above, along with Lindt USA president and CEO Thomas Linemayr.) Deputy Editor Diane Debrovner and I were honored to be on the judging panel, and to meet the winners in person:

Connie Erbert (left), who lives in Wichita, Kansas, has long been a champion for families with autism. She directs the Community of Autism Resources and Education program at Heartspring, she founded a camp for children with Asperger’s Syndrome and high-functioning autism, and started autism awareness walks that have so far raised more than $120,000.

Kerri Duncan (second from left), of Springfield, Missouri, realized more than a decade ago that her community needed a school to serve children with autism—so she started one herself, opening the Rivendale Center for Autism and Institute for Learning. She recently partnered with Specialized Education Services Inc. and plans to open schools all over the country.

Bonnie Gillman (far right) lives in Tustin, California, and in 2006 started the Grandparent Autism Network after her grandson was diagnosed with autism. GAN’s mission is to help grandparents better interact with and understand their grandchildren, as well as help grandparents support their own children. Bonnie has planned 42 free events for GAN’s 800 members and serves 34 communities in California.

It was so touching to hear how these women have improved the lives of families affected by autism. To learn more about the condition, including signs and treatment, and real parents’ stories, check out our extensive coverage.

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