What Parents Wish People Understood About Kids With Autism

Tuesday, April 2nd, 2013

In honor of World Autism Awareness Day (and month!), I asked the good people of MyAutismTeam—a social network of some 41,000 parents—to share the following question. Here’s what moms and dads had to say:

I wish people understood that children with autism…

“Just want to be accepted like everyone else.”—Rebecca W.

“Just because you know a child with autism doesn’t mean you know what autism is like for every child with it. There can be some similarities but they have different strengths, challenges, fears and requirements.”—Kathy R.

“Our kids cling to what makes them feel safe. Routine is key.”—Alicia K.

“My son is a child first. Please don’t ever refer to children as so-and-so’s ‘special needs kid.’ Start with his name first. Invite them to parties or a get-together once in a while. Be brave and show friendship. We will love you for the effort!”—Tonya C.

“Just because they process differently, or it takes a few more times for an explanation to sink in, they’re not stupid.”—Jill B.

“That they are not misbehaved kids. Their senses are different…. You don’t know how many times I’ve wanted to tell someone off for staring when Shophia has an episode in public.”—Tiffany C.

“Their disability is not always physically obvious, but they have special needs just the same.”–Jennifer R.

“They don’t ‘suffer’ from autism. They suffer from people’s ignorance, hate, intolerance and judgment.”—Jada W.

“Be literal with them, they don’t understand hints.”—Teresa T.

“It is not contagious.”—Sandi B.

“Our children are not spoiled! We do things differently to accommodate their needs because that’s what works for them to be able to function!”—Maria R.

“I don’t want my son to be treated differently, I want him to be accepted like everyone else—with the understanding that he is a little slower than other kids his age. And he doesn’t understand sarcasm.”—Rande L.T.

“They are not stubborn, willful or oppositional. They lack coping skills and are anxious, fearful and afraid.”—Linda O.

“Staring, bullying and isolating someone with this condition is a sin! My Aspie told me he doesn’t feel like going out in public because he feels as though he’s in the way! Try swallowing that when your firstborn, most beautiful child says this to you!”—Toni H.

“They are smart and creative people with much to offer this world.”—Traci D.

“They have hopes and aspirations for a full, useful and independent life…and they can achieve it with community support and acceptance.”—Nancy J.

“They go to college too! So proud of my 21-year-old son who is getting A’s in Japanese and loving it!”—Kim R.

“My autistic grandson is not ‘retarded.’ I hate that word. He is a handsome, very intelligent boy. He just handles some things differently.”—Nancy M.

“Not all kids or adults are like Rain Man.”—Dannie M.

“My son’s condition is not caused by bad parenting.”—Lisa A.

“They are capable of falling in love and even getting married when they grow up.”—Anna V.

“How much more capable than what you may realize. Don’t sell them short or count them out.”—Lisa C.

“They are a gift like any other child. And they are some of the strongest people in the world.”—Shayla A.

Image of Autism Awareness Day note via Shutterstock

Who World Autism Awareness Day Is Really For

Tuesday, April 2nd, 2013

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

It’s been almost five years since my son, Norrin, was diagnosed with autism. Before the diagnosis, I had no idea what autism was. What it really was. Growing up, I didn’t know anyone who had autism. And out of all my friends, I was the only one whose child had any kind of disability. I was scared and alone and no one could answer my questions. There was no one to offer any words of hope.

When Norrin was diagnosed in 2008, every 1 in 110 children had autism, a recent survey reveals that 1 in 50 school-age children have autism. In the last five years I’ve guided friends through the steps of having their children evaluated and diagnosed – giving them the insight I wish I had when we were going through the process.

I’ve learned that Autism Awareness goes beyond parents raising kids with autism. With autism becoming so prevalent – I don’t think anyone can afford to not be aware. This month is for you.

We live in a need to know society. I needed to know what autism was months before Norrin’s first evaluation.

If you’re the parent of a typical kid. You need to know what autism is because it can prevent bullying. Jill of Yeah. Good Times explains why in her recent post Everybody thinks it won’t be their kid.

Tell your kid that my kid likes to flap his hands, run back and forth, and talk to himself. Tell your kid that they might see this happening and feel uncomfortable because they don’t know what’s going on, and tell them that it’s okay to feel uncomfortable, and they can ask questions, but it’s not okay to make fun of him. It’s not okay to call him names, or point and laugh, even if their friends are doing it. Tell your kid that my kid does these things because it makes him feel good, and while that might seem weird, it’s totally okay.

If you’re in customer service, you need to know that some individuals need a little more understanding, patience and compassion – especially when they are on school outing. Because as Sunday of Adventures in Extreme Parenthood writes it is “during these instructional trips [that] our children are making strides to claim their rightful place among society.”

If you work in education – teachers, principals, psychologists or social workers, you especially need to understand autism because so many school-age children are undiagnosed and in general education classes. You need to know the signs so that you can help that child get the help he/she needs to be successful in the classroom.

If you’re in law enforcement, you need to know how individuals with autism communicate, you need to be able to read their body language.

Even if you’re not a parent of a typical kid, in customer service or law enforcement – you still need to know about autism. Leigh of Flappiness Is wants shoppers to stop staring at her son a because  ”every autistic child who has it, is different from the next.  Yet they do often share some similar traits – sensory overload and meltdowns are one of them.”

And if you’re a new parent – you especially need to know about autism. Because if you know the signs and have a concern. You can have your concerns addressed by a professional as soon you suspect your child has a delay.

Today is World Autism Awareness Day and April is Autism Awareness Month. Whoever you are, whatever you do – you need to know about autism. This is the day, the month to learn. And you can start by asking questions.

Join me – along with developmental-behavioral pediatrician Georgina Peacock, M.D., MPH, and board certified behavior analyst Patricia Wright, Ph.D., MPH - tomorrow for a Parents Magazine’s Facebook chat. We’ll talk about the early signs of autism, treatment options and services, and I’ll share my own personal experiences parenting an autistic child. Readers can participate in the chat by asking questions.

When: Wednesday, April 3

Time: 1 pm est

Where: Parents Facebook page

For more information please click HERE.

Check some of my other posts to raise Autism Awareness:

• What To Say to an Autism Parent
• “He Doesn’t Look Autistic” and Other Misconceptions
• How to be Friends with an Autism Parent
• 5 Things You Don’t Know About an Autism Parent
• No Need to be Sorry and Other Things You Shouldn’t Say to an Autism Parent

Let’s Chat About Autism

Wednesday, March 27th, 2013

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

When this photo was posted on Parents Magazine’s Facebook Page, some wondered why I would even mention that my son has autism.

From the moment my son Norrin was diagnosed, I’ve been very open. I remember my mom first telling me that I didn’t need to tell everyone about Norrin. And when he was younger, it probably wasn’t necessary. But the older he gets, the more obvious it becomes. Rather than have people wonder, I’d rather educate.

There are so many misconceptions about autism. So many things that other parents and kids don’t know. And autism is unique to every individual.

There have been times when I’ve told people Norrin has autism and they’ll say something like, “Oh, I never would have guessed. I know someone with autism and they’re like ______.”

I talk about Norrin’s autism because I want people to know what our autism looks like.

I never fault anyone for not knowing about autism. But autism seems to become more prevalent, and the more I talk about autism the more I hear, I know someone with autism. I think autism is something everyone should know about – whether they have a personal connection or not.

Next Wednesday, April 3, Parents and Easter Seals will host an autism-themed chat on the Parents Facebook page from 1 to 2 p.m ET.

Join the Facebook event for the chat and remember to visit the Parents Facebook page on Wednesday, April 3 at 1 p.m. ET. We look forward to hearing your questions!

For more information please click HERE.

Why Doesn’t The Government Care About Curing Cerebral Palsy?

Monday, March 25th, 2013

Today is National Cerebral Palsy Awareness Day, part of a month-long campaign. And there is a whole lot of awareness to be raised, because there is a shocking lack of funding for CP research. (Warning: If you have a kid with CP, the following might make your blood pressure rise.)

More than 800,000 Americans have cerebral palsy, notes the non-profit Reaching For The Stars (RFTS). It’s the most common motor disability in children, and has a higher rate of occurrence than muscular dystrophy, childhood cancer, hearing and vision loss, spina bifida, hemophilia, fetal alcohol syndrome and cystic fibrosis. There is no known cure, or means of preventing it. In more than 80 percent of cases of CP, the cause is unknown. As RFTS notes, “We still do not know much more about the underlying causes for prevention of CP than we did half a century ago.”

More troubling facts:

• Cerebral palsy receives no dedicated federal funding for research at the National Institutes of Health or the Centers for Disease Control. Data indicates that, in recent years, up to four times more NIH funding was dedicated toward research and surveillance of disorders that affect less than half as many people as those living with CP.

• Despite advances in prenatal and neonatal care, one study indicates the prevalence of CP is now as high as 3.7 per 1000 8-year-olds.

• CP is costly. Most children and adults who have it need long-term medical care. The average lifetime additional cost for the care of a person with CP versus one who doesn’t have it is $1.5 million.

What can you do?

Contact your U.S. Representative and Senators and urge them to support funding for cerebral palsy research. You can find your elected officials here.

What World Down Syndrome Day Means To Savannah Guthrie

Thursday, March 21st, 2013

In honor of World Down Syndrome Day 2013, TODAY co-anchor Savannah Guthrie has written a post about her Uncle Pierce. Please share it! It’s not just about a beautiful relationship—it’s about all the awesome people with Down syndrome bring to the world. 

On March 21, we mark World Down Syndrome Day — an opportunity to draw much deserved attention to a group of wonderful people that are contributing to their communities in exciting ways. For me, this day is personal; it’s a chance to remember and reflect on an individual who has had a huge impact on my life, my Uncle Pierce.

Pierce Franklin Long, Jr. was born on July 5, 1933. He was my mother’s older brother, my grandparents’ first child, their only son. Because he was born so close to the Fourth of July, my grandmother used to call him, “my little firecracker.” And it’s true that Pierce always sparkled with life and personality, with humor and charm.

Pierce was born with Down syndrome, but back then, the doctors didn’t really use that name for this condition. Attitudes were different, medical knowledge woefully incomplete. My grandparents were told he would never walk or talk, or be like any other little boy. They were told he likely would not live into adulthood. It was common practice then to put a child like Pierce in an institution.

My grandparents had a different idea.

Because of their vision and determination, Pierce grew up the center of love, attention and devotion in a warm and loving family. When his two little sisters came along (my mother one of them), they adored him, protected him, learned from him and taught him. He flourished. My mother says she can remember the elation the family felt when Pierce first learned to tie his shoes, to tell time, and later to read and write. These were milestones then. Today, I marvel at all that people with Down syndrome are able to achieve. I wish my grandparents were alive to see it.

When I was in high school and college, my grandparents and Pierce came to live with our family. I feel so lucky to have spent those years with him. He had many interests and passions. He was a devoted basketball fan – prone to wear his favorite basketball uniform day after day. He was affectionate, always ready for a hug and a kiss. Full of impish humor, he enjoyed teasing my sister and me, by asking us repeatedly how old we were, then guessing wildly inaccurate ages just to make us laugh. (“Are you 36?” he would ask us little girls with a mischievous smile.)

His nickname for me was “Vinny,” and he had a way of charming everyone around him. When I was a self-absorbed teenager, breezing past him or constantly on the phone, he would call out, “oh Vinny, your darling Uncle Pierce is talking to you!”

He was sensitive and emotionally wise. When my father died suddenly, our family was shattered. Sometimes, it was only Pierce’s simple kindness that could soften our grief. “I remember Charlie,” he would say. “I’ll say a prayer for him.”

Pierce reminded me every day what matters in life: goodness, gratitude, enthusiasm, warmth. He lived to a ripe old age with many friends and admirers. This day is close to my heart because he is close to my heart, and always will be. I hope people will take the opportunity to get to know those with Down syndrome who are living, working and like my uncle did, flourishing in their families and communities.

Photo courtesy of Savannah Guthrie