Is Autism an Invisible Illness?
Laura Shumaker recently wrote an article called, “Autism: Living with the Looks” for the San Francisco Chronicle.
I was at Barnes and Noble today and believe that I witnessed an autistic meltdown.
A father was in line with his teenage son when the woman in front of them sneezed loudly. The noise took the teenager by surprise, and he covered his ears and yelled “too loud, must leave, too loud” over and over again.
The father tried to soothe his son, but it was no use. I tried to make eye contact with the dad; I wanted to help, or at least show him some sign of support. But the two left as the eyes of curious shoppers followed them.
I remembered well the father’s desire to just disappear.
Although autism may be considered more of a “disease” or “condition” rather than an “illness” it truly falls into the area where frustrations about because the symptoms are invisible.
“I was always being told that if I just disciplined my son more he wouldn’t act so hyper,” says Sherry. “It had nothing to do with discipline. We could walk into a store and if the light above was flickering because it was going out, he would just freak out. Telling him to ‘stop’ or ‘be a big boy’ was not going to make a bit of difference. Too often people think we can talk our children out of a certain behavior, but when it comes to autism, it’s a long journey learning how to relearn how one responds to certain situations or environments.”
There are many resources and organizations where parents of children with autism can get not only tips, but also share some of the heart-ache that comes along with being a parent to a child who constantly seems to be struggling, but having the condition be invisible to most people. Autism Support Network , Autism Speaks and Autism Society of America are a few of the many organizations. Perhaps one of the greatest pats of these organizations it the support among parents. We found Hopeful Parents an inspiring web site too.
Michael E. Young, writer for The Dallas Morning News shares in his article “Parents of children with autism: We struggle alone“…
For families with children with autism spectrum disorders – a range of developmental disabilities that cause social, communication and behavioral problems – each day can be emotionally overwhelming, stress-filled and isolating.
Family and friends shy away. The child’s behavior can leave parents prisoners, trapped at home. If they venture out, passers-by stare, wondering why the child isn’t under control.
…day in, day out, many families with autistic children say they struggle on alone.”We don’t have other friends coming and offering to babysit our children,” said Clay Boatright of Plano, Texas, with wife Carole the parents of three daughters, including autistic 10-year-old twins. “They don’t have friends inviting them over for sleepovers. What we have is people saying, ‘Wow, that must be tough.’”
AUTISM NUMBERS
- Roughly 1 percent of children in the United States – 1 in 110 – have an autism spectrum disorder, with developmental disabilities running from slight to severe.
- ASDs occur in children of all racial, ethnic and socioeconomic groups, but disorders are four to five times more likely in boys than girls.
- Studies of identical twins show that if one has an ASD, the other will be affected 60 percent to 96 percent of the time. In nonidentical twins, if one has an ASD, the other is affected 0 percent to 24 percent of the time.
- Parents who have a child with an ASD have a 2 percent to 8 percent chance of having another affected child.
- A 2009 report showed that 41 percent of children with an ASD also had an Intellectual Disability – an IQ of 70 or below.
- About 40 percent of children with an ASD don’t talk at all, and an additional 25 percent to 30 percent have some words at 12 to 18 months of age and then lose them. Others may speak, but not until later in childhood.
- On average, medical expenses for someone with an ASD are about five times higher than for those without an ASD.
SOURCE: U.S. Centers for Disease Control and Prevention
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- Parents of Autistic Kids at Risk of Divorce? (webmd.com)
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Invisible Illness Week Outreach Described on Video By Founder
August 10, 2010 by admin
Filed under Today's News, Announcements
Okay, guys and gals. . . it’s time to grab your paper and pen and get busy. Watch this short video on how those 2 tools can transform a life. . . one note at a time!
If you do not see a video above, click here to visit our YouTube Channel for Invisible Illness Week.
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Can One Person Make A Difference? The Story Behind The Notes
August 8, 2010 by admin
Filed under Today's News, Announcements
When Lisa Copen had 4 joints replaced in her left hand during the winter of 2009 she wore a scary looking outrigger splint for four months, 24 hours a day, that caught the attention of many people wherever she went. While some people awkwardly looked the other way, many approached her and started to share their stories.
Lisa quickly realized just how many people are inwardly suffering silently and then when they saw someone who they thought could relate with their pain, they opened up and were willing to share. Many conversations ended with a hug and sometimes a few tears. She had also talked with friends about how, when she saw someone with an invisible illness getting out of a car parked in a handicapped spot, part of her wanted to go over and just say “I understand” but she was afraid how they may respond. She discovered other people with invisible illness felt the same way!
Most people are not looking for large support groups or 100 percent understanding when it comes to living with a chronic illness. People in pain often times just want ONE person who really “gets it.” And that one person can make a world of difference.
As the founder of National Invisible Chronic Illness Awareness Week, which she began in 2002, she chose 2010 to be the year of “Each One Can Reach One.” Thousands of people around the world are participating by leaving encouraging sticky notes anywhere they think of, from bathroom mirrors and community bulletin boards, to inside of envelopes when they pay their bills.
With nearly 1 in 2 people in the USA living with a chronic condition such as diabetes, arthritis, cancer, or fibromyalgia, about 96% of illnesses are invisible. The hope of the people involved at National Invisible Chronic Illness Awareness Week is to remind people that although they may feel like they are alone in their pain, there are people who do care and understand the unspoken language of invisible illness.
It is easy to get involved. Grab a pen and some paper and share some encouragement in just a sentence! Add invisibleillness.com at the bottom so those who find the notes nowhere to discover more encouragement and get involved too!
National Invisible Chronic Illness Awareness Week is September 13-19, 2010. We hope you will join us in spreading hope to those who are hurting!
This event is sponsored by Rest Ministries, the largest Christian organization that specifically serves those with chronic illness, which Lisa founded in 1996.
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You Can Make a Difference! Each One CAN Reach One!
August 7, 2010 by admin
Filed under Free Ways to Help
Upload your own photos!
You can send them to us but it may take a few days for them to get uploaded. You can also do it yourself at Photobucket. You will need to create a free account first, if you don’t have one and then you can upload as many as you want. Our account is http://photobucket.com/invisibleillness . We’d love to see them!.
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