Archive
The Trouble with Circle Time
June 15, 2011
By Shonda Schilling
You most likely recognize Curt Schilling as a Major League Baseball All-Star, a former player of the Boston Red Sox and a World Series championship pitcher. But did you know his son has Asperger’s Syndrome?
New York Times best-selling author Shonda Schilling shares an excerpt from her book The Best Kind of Different, which chronicles the story of her son Grant’s struggle with Asperger’s Syndrome and the heartbreaking and ultimately blissful journey she and her husband took to understanding this often misunderstood syndrome. Shonda spends much time and energy speaking publicly about Asperger’s Syndrome and generating awareness for children with autism spectrum disorders. Interested in hearing more? Then join us at the 42nd annual Autism Society National Conference this July 6-9 in Orlando. Read more about the presentation here:
In this excerpt from Chapter 5: The Trouble with ‘Circle Time,’ Schilling describes coming to terms with Grant’s erratic behavior, and facing and appreciating his differences:
“Grant,” I said, trying to hold his gaze, “until you are willing to sit in circle time every day, we’re taking away your Littlest Pet Shop toys.” At the time, he collected these little magnetic toys. He had buckets full of them. He was always collecting tiny little things. Without hesitation, Grant burst into tears. He cried and cried – to the point that you’d think he’d just lost his best friend. It seemed as if he was overreacting, which he did, often. But he was so affected by the loss of those toys that he finally went to circle time.
And yet, at the same time that he struggled with listening to adults at school, he displayed a level of caring and understanding that was far beyond his years. That year in kindergarten, Grant started removing my purse from my shoulder and carrying it for me. He would also open doors for me. I couldn’t understand how this child – who would constantly rebuff me in public – had learned to be so chivalrous. It didn’t make sense. Curt and I had always tried to teach our children good manners, but this was a bit extreme. Finally, I learned that it was because of William.
In kindergarten, Grant palled around with a child named William who had spinal muscular atrophy (SMA) and had been in a wheelchair since the age of one. According to his teacher, Grant insisted upon carrying William’s bag and opening doors for William and his wheelchair. That practice had carried over to me.
One day I overhead Grant talking to his aunt Allison while we were dropping him off at school. He pointed at William and told her, “Aunt Allison, that’s my best friend, William. God made him not to walk.’” After Grant got out of the car, Allison was choked up just talking about Grant’s statement.
These moments, as wonderful as they are in retrospect, were the moments that confused me the most as a parent who was trying to understand her child. Before I knew about Asperger’s, before I knew exactly what it was that made Grant different, the thing I kept coming back to was that he seemed like one big youthful, energetic contradiction. He would do something that would make you angry, and in the same breath he would tell you he loved you. This tendency made me refer to Grant as a child who would pinch you while he was hugging you.
School was a perfect example of this. He would struggle listening to adults, and he would fight us every step of the way as we tried to convince him to be more respectful, but then he’d turn around and display a thoughtfulness and caring that no one else his age was able to. Yet for some reason, one never seemed to carry over to the other. He just never knew when to say when, and that obliviousness shifted his behavior from good to bad.
For years before Grant was diagnosed, this never-ending sea of contradictions was a constant source of confusion. The contradictions were what make you think this is just a phase, that somehow the “bad” part or the “odd” part of the contradiction will one day just stop, leaving only the “good” part behind. Isn’t it funny how willing we are to assume that bad behavior is somehow different, but good behavior is normal? When I think back to what things were like before I knew about Asperger’s, my mind goes to those parking lots and airports where I almost lost it. The tears and the screaming, the nights when I couldn’t sleep because of what he’d done in school that day, or what I worried he might do the next. I also think about how often Grant would do something good, something that other kids just didn’t do. The times when he would say a word or a phrase that would show a level of understanding and complexity that exceeded what I myself thought.
In those moments, I was always caught speechless, trying to understand how the same child who just uttered those words could have had a meltdown in the grocery store over pork chops two nights before. It didn’t make sense.
For a limited time, Harper Collins Publishers’ Bookperk.com is offering signed copies of The Best Kind of Different by both Shonda and Curt Schilling. Click here for more information: http://www.bookperk.com/offer/schilling-the-best-kind-of-different-01
Join Shonda and the Autism Society at the 42nd annual Autism Society National Conference! Register here. The Autism Society will have copies of The Best Kind of Different on sale and there will be a book signing!
Topics:Living with Autism, Resources
The Bond Between Father and Son is Even More than I Expected
Joel, editor of the blog network Autisable, shares his thoughts on fatherhood.
June 14, 2011
By Joel
Being a dad of a child with autism has its own set of blessings.
Like many fathers, when the diagnosis was confirmed that our son was on the spectrum, there was a sense of relief – and then a sense of loss. Lost dreams, lost moments that may or may not ever be.
Often, I’ve found myself in a state of wanting to have a basic conversation with my son or even play catch – teaching him sports. You know -- what dads often do with their kids.
But there’s something else I’ve found that overrides the sense of loss I once had, and it’s those moments of joy when we experience that connection. The smiles and the hugs I receive when I get home from work. The wrestling, the tickle fights, the reading of books, the watching of videos.
The bond between father and son is still there, and it’s even more than what I expected.
I remember one day trying to explain to someone that my son does understand, but he has his own set of challenges expressing himself. While I was explaining, my son held my hand – and squeezed tightly whenever he wanted to say that he heard me and appreciated me for speaking for him.
I’ve found that the role of a father is more than I ever imagined, and this is due to learning so much from my son, who, even with so few words, has taught me so much.
May you enjoy Father’s Day, and find those moments of joy.
- Joel manages the blog network Autisable, an online community that connects people who want to tackle the puzzle of autism. The mission of Autisable is to be of service to the autism community by providing an open platform where anything autism related can be shared and discussed.
Start blogging and join the Autism Society group here!
To read more about the Autism Society’s partnership with Autisable, click here!
Topics:Living with Autism
Being Michael’s Teacher
In celebration of Father’s Day this Sunday, the Autism Society is featuring guest blog posts from great dads all this week. Happy Father’s Day!
June 13, 2011
By Jim, a member of the Autism Society of Ohio
Although I don’t have a degree in education, it is clear that I am – and will always be – a teacher for Michael, my 22-year-old son with autism. Class is in session during all waking hours when we are together.
If we are watching sports together, I like to ask him “Do you know what the announcer means when he says (fill in the blank)?” This type of question helps me know what part of the language Michael understands, or doesn’t understand. He passed a recent “quiz” when he reported during a basketball game that, “There is a 10-second difference between the shot clock and the game clock.”
A more important class involves social skills. “Remember to look at the person you are talking to” or “Wait for your turn in conversation” are examples of lessons that must be taught and re-taught with some frequency. Other skills, like saying hello and being polite, have been mastered.
On Father’s Day, Michael and went to the golf course together. As we talked about the safe driving of a golf cart, how to “mark” your ball with a coin on the putting green or how to rake a sand trap, I realized that these ongoing life lessons are a huge part of our relationship. All parents teach and model behavior, but the parents of children on the spectrum have the challenge of not letting a teachable moment go by. The rewards of that extra “class time” are well worth the effort.
Looking for more information and resources? Don’t miss our Family Issues webpage.
Autism Society free resource ocument: Next Steps: A Guide for Families New to Autism (must sign in to access). This 8-page document is geared toward families who have just had a child diagnosed with an autism spectrum disorder. It provides a general understanding of the autism spectrum, an overview of the various treatment options and brief information about education, services and supports that are helpful to children and adults on the autism spectrum.
Visit the Autism Society of Ohio. The ASO includes persons with autism, families, and professionals working together to improve services and support at the state level.
Topics:Living with Autism
Why We Need Chemical Reform
June 10, 2011
By Donna Ferullo, Autism Society Director of Programs Research
Autism is the fastest growing developmental disability in the United States: It has increased 600% in the last two decades.1 This epidemic within one generation cannot be solely accounted for by genetic causes or wider diagnostic criteria or even increased awareness. Both past twin studies, in which twins have the same genes, but different environments2, and current research efforts3 implicate environmental exposures and gene- environment interactions in the development of autism. Researchers are focused on the effects of environmental exposures both on parents and on their unborn child. There is much more work to do to uncover the mechanisms, but the concept is this: developing fetuses, young children and their parents are exposed to many more chemicals than in the 1970s, when the Toxic Substances Control Act of 1976 became law.
Today, to a mother carrying BPA, mercury, phlatates, and brominated flame retardants, is born a baby with 200 contaminants already in cord blood.4 The developing brain is exquisitely sensitive to environmental exposures from conception through childhood, and infants and toddlers are often more highly exposed to toxic chemicals by virtue of their small body weight, faster metabolism, and tendency to mouth objects and proximity to the ground where some chemicals reside in dust. Toys, baby care products, crib mattresses, baby bottles and even nursing pillows are imbued with toxic substances unregulated and untested for human safety as well as for their effect on the developing brain. For example, lead, methyl-mercury, arsenic, and toluene have been identified as known causes of neurodevelopmental disorders, yet are poorly regulated, widely available in the manufacturing channels, and not tested in small constant doses or in combination.
During the years following TSCA, we have learned that lead, mercury and other neurotoxic chemicals have a profound effect on the developing brain at levels that were once thought to be safe.5 Exposure to these chemicals at even minute doses during development can cause lifelong effects. Add to this early life constellation more polluted air and water, more viruses, more processed foods, and weakened links in the immune system if one is vulnerable to autism. In some complex combination of insults, little brains reach a tipping point.
Researchers continue to tease out the aspects of this multifactorial breakdown. Meanwhile, we live, breathe and start our families in the presence of toxic chemical mixtures and constant low level toxic exposures, in stark contrast to the way chemicals are tested for safety. In Mind Disrupted6, a 2010 biomonitoring study from the Learning and Developmental Disabilities Initiative, we tested 12 Americans living near nothing unusual (www.mindisrupted.org). All 12 showed evidence of toxic chemicals in their blood and tissues: mercury, arsenic, triclosan, BPA, phthalates and more. No one is exempt. Some are more vulnerable.
We need chemical policy that protects our most vulnerable citizens. We need to cradle the unborn in an environment safe for brain development and welcome them to a world which removes threats to their healthy continued growth. Because autism is a whole body condition, removing toxic chemicals from the environment of a person with autism also means their persistent medical problems like gut disease, allergies, rashes and seizures may settle to a better quality of life.
1 Hertz-Picciotto and Delwiche, “ The Rise in Autism and The Age at Diagnosis,” Epidemiology: 20:1, Jan 2009
2 Hallmayer et al, “Population Based Study of Twins in California,” presented at INSAR 5/21/2010
3 Hertz-Picciotto and Delwiche, “ The Rise in Autism and The Age at Diagnosis,” Epidemiology: 20:1, Jan 2009 and Herbert, “Autism and Environmental Genomics,” Neurotoxicology. 2006 Sep;27(5):671-84
4 www.ewg.org
5 Learning and Developmental Disabilities Initiative, “The Health Report,” 2011
6 www.mindisrupted.org
Additional information:
Autism Society Applauds the Introduction of the "Safe Chemicals Act of 2011"
The Autism Society Environmental Health Initiative
The Autism Society is the only autism-specific organization in the coalition Safer Chemicals, Healthy Families, a coalition of diverse groups united by their common concern about
toxic chemicals in our homes, places of work, and products we use every
day.
Topics:Advocacy, Environmental Health, Research
Autism Society of Washington Board Member Advocates for Safe Chemicals on Capitol Hill
June 8, 2011
By Autism Society
Julie Strandquist (on right in photo), a mother, pediatric registered nurse and board member of the Autism Society of Washington (Spokane Chapter), traveled to Washington, D.C., in late May to show her support for the “Safe Chemicals Act of 2011” (S. 847), legislation that would regulate chemicals put on the market for consumer safety.
“You can monitor your child’s diet, take them to and from therapy, and give them supplements, which is all good. What few parents realize is that what we cook on, clean with, drink from, sleep on, walk on, wash with, etc., is not stringently regulated or tested. There are several hundred toxins in these components that we are exposed to and not informed of the dangers,” Strandquist said.
Resources:
Jessica Alba and America's Moms Call on Congress to Pass Safe Chemicals Act
Autism Society Environmental Health Initiative
Safer Chemicals, Healthy Families
The Autism Society of Washington
Related Autism Society press releases:
New Study Finds Toxic Chemicals Pervasive in Baby Products
Autism Society Applauds the Introduction of the "Safe Chemicals Act of 2011"
Environmental Health in the News Today:
Scientists Warn of Chemical-Autism Link
CNN Health
"We live, breathe and start our families in the presence of toxic
chemical mixtures and constant low-level toxic exposures, in stark
contrast to the way chemicals are tested for safety," said Donna
Ferullo*, Director of Program Research at the Autism Society. Read more...
* Donna Ferullo will be blogging about this topic this Friday! Check back here.
Topics:Advocacy, Environmental Health, Events, News
Summer Travel Tips for Families Living with Autism
May 31, 2011
By Autism Society
The Autism Society is committed to providing information that will help you live your best journey with autism. In celebration of the unofficial start of summer, we would like to share with you this helpful list of vacation tips. Read on and please share in the Comment box your own experiences and lessons learned while traveling. And don’t forget the sunscreen!
If you’re traveling with an individual with autism this summer, check out the following tips from experts to make the trip more enjoyable for all.
Plan in advance. Call ahead and inform the airline, hotel, resort or cruise line of the individual’s situation, and inquire what special accommodations (for example, fridge inside room) are available.
- Prepare the individual before and during the trip on what to expect. Use pictures, the web or objects, as appropriate, to communicate.
- Don’t hesitate to explain and share information about autism to others you may encounter, including flight attendants, hotel staff, employees at the amusements you visit and other vacationers.
- Bring familiar items that you think will make him or her more comfortable.
- Select vacation destinations with environments you believe the individual can handle.
- Book a cruise or resort vacation during “low season“ so there will be fewer guests and the staff will have more time to devote to your needs.
- Travel by car if flying or other public transportation seems too difficult.
- Choose hotels/motels with kitchen suites or room service so you have the option to eat in your room.
- MP3 players with headphones, loaded with favorite music, can soothe individuals who are disturbed by noises. Personal DVD players can also help make a long trip more enjoyable.
- Adhere as closely as you can to aspects of the individual’s normal routine.
- Whatever happens, stay calm and remember tomorrow you can always try again.
Many thanks to the Indiana Resource Center for Autism and Dr. Cathy Pratt of the Autism Society Board of Directors for their work on these tips.
Topics:Living with Autism
Ask an Autism Society Expert
May 26, 2011
By Lars Perner
Q: It seems that I'll read one book about autism that says one thing, then read the exact opposite in another. About half of the things I read don't seem to apply to my son at all. About half seem to apply but, of course, not completely. Am I missing something?
A: There are large variations among people on the autism spectrum. Ironically, there may be larger variations among those on the spectrum than within the general population. This means that you will probably find some books that are very much “on target” and many more that seem very far off. Many books are written by—or about—specific individuals on the spectrum. In some of these books, you may be able to find some good “models” who match your son relatively well in many ways. Not only can these be helpful in dealing with problems that you are currently facing, they may also help you realize issues that you have not yet thought of and help you prepare for things that may come up in the future.
Q: My daughter’s teacher says that she doubts that Jenny’s “meltdowns” have anything to do with sensory overload. On some days, Jenny does well throughout the day. On other days, with no more noise or distractions, she acts out. I know that Jenny is trying hard to behave and she often comes home from school crying. What can I tell the teacher?
A: Persons on the autism spectrum often have “good” and “bad” days to a much greater extent than ordinary people do. On some days, it is going to take a lot less to trigger frustration than it will on others. Surprises and having to deal with changes can compound the exasperation of a bad day. It should also be noted that certain “sensory violations” may be much more evident to the person on the spectrum than to the detached observer; for example, other students nearby whispering to each other, a custodian handling noisy equipment in the hallway, a light flickering, or, on a rainy day, clothes giving off a vapor or making different sounds.
- Lars Perner, Ph.D., Assistant Professor, Marshall
School of Business, University of Southern California; Chair, Autism
Society Panel of People on the Spectrum of Autism Advisors
Topics:
Simple Checklist May Spot Signs of Autism by Age 1
April 28, 2011
By Autism Society
By Lauran Neergaard
AP Medical Writer
A simple checklist that parents fill out in the waiting room may help doctors someday screen for warning signs of autism as early as a baby's first birthday.
San Diego pediatricians tested the tool with more than 10,000 babies at their 1-year checkups, looking for such things as how the tots babble, gesture and interact with others.
The research, being published Thursday, is a first step in the quest for earlier autism screening. It's not ready for routine use, as more work is needed to verify its accuracy. But it also may prove valuable in finding more at-risk babies to study what causes the developmental disorder.
"There are subtle signs of autism at one year if you just look for them," said neuroscientist Karen Pierce of the University of California, San Diego, who led the study. "Let's just get these kids detected early and treated early."
Recent data suggest about 1 in 100 U.S. children has some form of autism, which ranges from mild to severe problems with behavior, communication and socialization. The American Academy of Pediatrics already urges autism screening during regular doctor visits at ages 18 months and 24 months. Yet a 2009 study found that on average, children aren't diagnosed until they're 5.
Experts say early therapy can lessen autism's severity, even if they don't know exactly what types will prove best. "The earlier you start, the better," said Dr. Lisa Gilotty of the National Institute of Mental Health, which helped fund the study.
Hence the interest in younger screening.
"This is very exciting work, to think we may be able to identify children with autism this early," said Dr. Susan Hyman of the University of Rochester and a pediatrics academy autism specialist, who wasn't involved in the new study.
But, she cautioned, it's not clear how best to do that: "I don't think screening for autism at 12 months is ready for prime time."
Thursday's study uses a 24-question checklist written in easy-to-understand terms that parents can answer in about five minutes. It was developed a few years ago to detect broader signs of language or developmental delays. Pierce signed up 137 pediatricians to use the questionnaire during every 1-year checkup and refer babies who failed for further testing. Those youngsters were re-evaluated every six months to age 3, when a diagnosis could be certain.
Of 10,479 babies screened, 184 who were sent for further testing followed through -- and 32 eventually were diagnosed with autism, Pierce reported Thursday in the Journal of Pediatrics.
That's consistent with expected rates of detection that young; Rochester's Hyman said some forms of autism don't become apparent until age 2 or even later.
Numerous other children were diagnosed with language delay or some other developmental problems, so that in the end, the screening accurately predicted some problem in 75 percent of those kids, Pierce calculated. But there were false alarms for 1 in 4, who had no problems.
The children began treatment at around 19 months. In addition, Pierce's program does MRI scans and other tests as part of broader research into autism's biological underpinnings, studies now limited by the few numbers of babies being identified as at risk when they're so young.
One big puzzle: Only a fraction of the total 1,318 babies who failed the initial screening were referred for follow-up. The study couldn't tell how much of that gap was recording error, or if doctors or parents weren't worried enough to follow up right away, or if families went elsewhere.
Still, the study shows early screening is feasible in the hectic everyday offices of regular pediatricians. That's important as scientists now develop various screening tests, said Geraldine Dawson, chief science officer of Autism Speaks, which co-funded the work.
Pierce says other cities should consider the screening -- but doctors first must know where to send families for follow-up testing. That can cost several thousand dollars, and state programs for free evaluation of at-risk children may have waiting lists.
For now, what should worry parents? Pierce's top concerns:
--Lack of what she calls "shared attention." Around age 1, babies should try to "pull your attention into their world," pointing to a bird and watching to see if you look, for example, or bringing you a toy, she said.
--Lack of shared enjoyment, where a baby may smile at mom but not engage if other people try peek-a-boo.
--Repetitive behaviors like spinning a car wheel rather than playing with the toy.
Language delays are worrisome if they accompany other problem signs, she said: "If they wave and they point, that's a good sign the brain is readying itself to be ready to speak."
Topics:News
Autism Society Applauds the Introduction of the “Safe Chemicals Act of 2011”
Legislation Would Protect American Families from Toxic Chemicals in Everyday Products
April 15, 2011
By Autism Society
FOR IMMEDIATE RELEASE
Media Contact:
Amanda Glensky
Media Specialist
Autism Society
301-657-0881 x 9015
aglensky@autism-society.org
(Bethesda, MD) April 15, 2011 -- Signaling their clear intention to protect families from toxic chemicals linked to serious health problems, Senators Frank Lautenberg, Barbara Boxer, Amy Klobuchar, Charles Schumer and others yesterday introduced the “Safe Chemicals Act” to upgrade America’s outdated system for managing chemical safety. (Click here to watch video of Sen. Lautenberg talking about the bill).
The Act responds to increasingly forceful warnings from scientific and medical experts -- including the President’s Cancer Panel -- that current policies have failed to curtail common chemicals linked to diseases such as cancer, learning disabilities, infertility, and more. The Senate’s Safe Chemicals Act builds on momentum from 18 states that have passed laws to address health hazards from chemicals, and numerous corporate policies of major American companies restricting toxic chemicals, including Staples, SC Johnson, Wal-Mart and Kaiser Permanente.
“Thousands of unchecked toxins in the American marketplace are highly detrimental to the 1.5 million Americans living with autism today because many have immune deficiencies that, when exposed to certain substances, complicate already existing health issues,” said Lee Grossman, Autism Society President & CEO. "As the leading autism organization exploring the link between environmental toxins and autism, the Autism Society thanks Senators Lautenberg, Boxer, Klobuchar and Schumer for standing up for American families.”
The Safe Chemicals Act would overhaul the 35-year-old Toxic Substances Control Act (TSCA), which is widely perceived to have failed to protect public health and the environment. Specifically the Act would:
- Require EPA to identify and restrict the “worst of the worst” chemicals, those that persist and build up in the food chain;
- Require basic health and safety information for all chemicals as a condition for entering or remaining on the market;
- Reduce the burden of toxic chemical exposures on people of color and low-income and indigenous communities;
- Upgrade scientific methods for testing and evaluating chemicals to reflect best practices called for by the National Academy of Sciences; and
- Generally provide EPA with the tools and resources it needs to identify and address chemicals posing health and environmental concerns.
“The whole world has woken up to the ragged holes in our federal safety net for chemicals,” said Andy Igrejas, Director of Safer Chemicals, Healthy Families, a coalition of 280 health, environmental and business groups, of which the Autism Society is the only autism-specific member. “We need a new law to put commonsense limits on toxic chemicals, both to protect American families and to give a leg up to American firms in a world market that increasingly demands safer products.”
Passed in 1976, TSCA’s presumption that chemicals should be considered innocent until proven guilty was a sharp departure from the approach taken with pharmaceuticals and pesticides. Since then, an overwhelming body of science has shown that presumption to be unfounded. Published studies in peer-reviewed journals have shown many common chemicals can cause chronic diseases and can be toxic even at low doses.
“It has been far too long since our nation's chemical substances policy has been reformed. This legislation is a critical first step in addressing the environmental health issues surrounding autism,” said Jeff Sell, Autism Society Vice President of Public Policy and General Counsel. “I am proud that the Autism Society is taking the lead in the autism community in efforts to educate and empower the public on the impact of the environment on their health and the health of future generations.”
About the Autism Society
The Autism Society, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. Together with more than 150 chapters nationwide, the Autism Society increases public awareness about the day-to-day issues faced by people on the spectrum, advocates for appropriate services for individuals across the lifespan, and provides the latest information regarding treatment, education, research and advocacy. For more information, visit www.autism-society.org.
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Topics:Environmental Health, News
Superman of Intelligence
April 14, 2011
By Tracy Thresher
I want my wonderful fans to know I love reading your inspirational letters. I would love to tell you the answers to your thought provoking questions. However, my process of communication takes much patience from all sides. My fan mail is the most important reassurance that I am doing the best work I possibly can. Knowing I am helping people consider the presumption of competence gives me the important feedback I crave. The people who have written me know the path to finding their own lives needs communication that is not limited by the choices presented by others. The most open communication happens when one has the mode to create their own language. Vocabulary is unique to individuals, just look at my friend Larry. To have our own expression gives us freedom to be engaging to others. Without having a full range of words we become mere shells of our intelligent minds unlike the supermen of intelligent thinking that we have become. My advice to my fans is: to continue questioning who you wish to become. Parents, please continue your search for the mode of communication your child needs to be open in their communication. It will be rough to get to the place you dream of. My path was tough too but it was worth the hard work to be in this place of being able to communicate. I hope to have more letters from my fans. Even if I do not answer your great letters it shows me you have the right thinking to find your path. Keep searching. I will see you in Ohio.
To read more from Tracy Thresher, check out his blog at http://www.wretchesandjabberers.org/tracy/. Don't forget to catch the Wretches & Jabberers tour this April: buy your tickets here.
Topics:Living with Autism
