

The 36-Hour Day
with Lylah M. Alphonse
I'm a full-time editor, a part-time writer, and a mom and stepmom to five amazing kids, ages 1 to 14. For me it's not about finding balance, it's about the daily juggle-- my career, my commute, freelance work, homework, housework, married life, social life, and parenting-- and finding the time to get it all done.
To learn more about Lylah, check out her Work It, Mom! profile and read her blog at writeeditrepeat.blogspot.com.
Autism awareness: Understanding and helping a child on the spectrum
Categories: Hacking Life, Parenting
April is Autism Awareness Month, and I’m a parent of a child on the spectrum. With autism now more common than pediatric cancer, diabetes, and AIDS combined — The US Centers for Disease Control and Prevention estimates that 1 out of 150 kids have autism, an increase from previous estimates — if your child isn’t on the autism spectrum, chances are good that he or she knows (or will eventually know) someone who is.
Most people hear the word “autism” and automatically think of Rainman, the 1988 film starring Dustin Hoffman as an autistic savant with an affinity for numbers and a painful need for routine. But as any parent of a child with an Autism Spectrum Disorder knows, most forms of autism look nothing like that.
Our 10-year-old son was diagnosed with Asperger’s Syndrome about five years ago. Asperger’s is a “High Functioning” form of autism, and it took time for family members to come to term with the diagnosis. “But he smiles and laughs and is affectionate! He can’t be autistic!” one insisted. “That’s can’t be right,” another declared. “He’s just a quirky kid.”
According to the National Institute of Mental Health (NIMH), “Autism Spectrum Disorders (ASD), also known as Pervasive Developmental Disorders (PDDs), cause severe and pervasive impairment in thinking, feeling, language, and the ability to relate to others.”
Autism may be characterized by varying degrees of impaired social interaction or communication, but a little insight can go a long way toward making social situations easier. Start by shattering the Rainman myth, and take a moment to see what autism is like from the point of view of someone on the spectrum.
That public tantrum you’re witnessing, for instance, may be sensory overload. The silent child who doesn’t want to make eye contact — or who is chattering away incessantly, without regard to the conversation — may just be overwhelmed or unsure of what else to do.
“The general public may see how parents handle these situations and not understand the reasoning of what is being done,” points out Mika Bradford, a nutritionist and autism activist. “Many parents, including myself, have spent thousands of hours and dollars learning how to parent using a positive approach, shaping the responses of the child (which ultimately hinges on our actions and behaviors as parents and caregivers). That may sound like common sense, but it is amazing how many parents of neuro-typical children never look at how their actions are impacting the responses of the child.” (Read the rest of Work It, Mom!’s profile on Mika here.)
Looking for more information on helping — or helping someone else help — a person with autism? Here are a few of my favorite resources:
Ellen Notbohm, the author of Ten Things Every Child with Autism Wishes You Knew, Ten Things Your Student with Autism Wishes You Knew, and The Autism Trail Guide: Postcards from the Road Less Traveled, all ForeWord Book of the Year finalists, is the mother of a child with autism and another with ADHD. She is also co-author of the award-winning 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, a columnist for Autism Asperger’s Digest and Children’s Voice, and a contributor to numerous publications and websites around the world. Her excellent essay, “Ten Things Every Child with Autism Wishes Your Knew,” is adapted from the book of the same name and provides an enlightening glimpse into the minds of children on the spectrum.
AutismWeb.com: A parents’ guide offering news, conference information, educational resources, and interactive message boards.
Wrongplanet.net: The forums here are geared toward people of all ages on the Autism Spectrum, with threads for parents, school and college life, jobs, and social skills, as well as active forums on adult autism issues and discussions.
The Autism Research Institute: In addition to information for parents dealing with new autism diagnoses, Autism.com offers resources for those searching for a doctor affiliated with Defeat Autism Now! (DAN) and information about possible autism triggers and the controversial idea of autism recovery.
Autism Network for Dietary Intervention: Research show that many people on the Autism Spectrum also suffer from treatable gastrointestinal problems, such as “moderate to severe including esophagitis, gastritis and enterocolitis along with the presence of lymphoid nodular hyperplasia,” according to research by Dr. Timothy Buie of Harvard University and Massachusetts General Hospital. Removing certain proteins like gluten and casein can make a difference for some people on the spectrum; though some mainstream doctors feel that dietary intervention is neither harmful nor helpful, many parents with children with autism find that it’s an easy first step to take toward treatment. “If I were to put a gallon of milk in my car’s gas tank, people would think that I was nuts. But when I suggested that what my son was eating affected his moods and behavior, I was belittled,” nutritionist Mika Bradford says in an interview. “We know that what we eat can affect our weight, blood-sugar levels, and how we feel. Dietary intake is directly related to medical conditions like Celiac disease and diabetes. Why would we diminish its role in other states of disease or behavioral diagnosis?”
AutismSpot.com: With a free online library of blogs, articles, and about 400 videos from parents, teachers, therapists, and medical professionals — plus 120 or so more on their educator-training platform, SpotUniversity.com — AutismSpot aims to make information from private providers accessible in a community environment. “You know the last five minutes of a therapy session, when the therapist tells you, ‘This is what you should work on at home’?” founder Kent Potter says. “Many people can’t afford to meet with these providers,” so that’s the type of information his site aims to offer — and as much of it as possible, not just the popular ideas. “We don’t have to agree on what works,” Potter says, “just that there are many options… It’s not just about talking. It’s about communication.”
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I have lots of pet peeves about the current “autism” discussions, statistics, approaches, etc. I have close relatives who range from more severe than “Rainman” (what I consider true autism) to “high” functioning Aspergers. I feel it’s counterproductive to lump them all under the same term. I expect that after a lot of money has been thrown toward the “spectrum” theory, someone will come to the conclusion that they are actually two different “conditions.
Popular wisdom suggests finding / making an excuse for just about every non-ideal behavior or ability. If we could just understand! I do not deny that Aspergers is real. But I will say that the thing these kids need more of is limits, not excuses. Their need for consistent limits (aka strict discipline) is greater than that of “typical” kids (if any such exist any more). My nephew with Aspergers’ greatest need is to have someone look ahead at his future and think: what would he want it to look like? Would he want to have a few normal friends and to get along with people at work? Then to be truly compassionate, we need to tell him today how to adjust his thinking and behavior so that can be a possibility.
In addition, why do we always need a label to be understanding of individual differences? Some people are shy - it’s not a disorder, it’s a personality trait. Shy people have been responsible for some of the greatest advances in human history. And the same can be said of outgoing people. It takes all kinds to make a world!
SKL | April 20th, 2009 at 11:26 am
I actually think it will come out to more of a spectrum. After all, SKL knows autistic children more severe than the “Rainman” stereotype, why then are there not children much less severe?
My daughter’s therapy center had classes in social interaction and Asperger’s kids were placed in with autistic kids (used loosely, whoever has 299 diagnostic code vs 299.8). Watching that, If they are the model for Asperger, then she is most certainly autistic; yet she picked up the modeled behavior and language more quickly than some of the other children, so does that not indicate some level of a spectrum?
Whatever the outcome of the spectrum debate, the good outcome is that research is finally being put toward it. SKL noted helping her nephew find ways to help break through will help his future, and the study on the spectrum has the possibility to start those breakthroughs for all our children.
Mich | April 20th, 2009 at 4:47 pm