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In Their Own Words – Tis the Season…

December 31, 2010 13 comments

This “In Their Own Words” is by Shelley Stolaroff Segal. Segal is a playwright, performer, and essayist living in Greensboro, North Carolina.  Her latest play focused on autism and race and was performed at the Manhattan Repertory Theater and TEDxEast.  Her fourteen-year-old autistic son, Josh, is her divine inspiration, as is his equally divine twin sister, Jordan.

This is the time of the season when I summon my gratitude, reflect on the past year, and count my blessings.  I do this even though my son is going through puberty and I am going through my chocolate.  Josh is low-functioning and non-verbal, but ridiculously cute.  (Except when he’s practicing his latest obsession, snapping plastic items into shards.  Cutlery, C.D.s, DVDs, hangers, you name it.  His favorite two words now are “Bake it.”)

However, he’s still charming, and I want to recognize my blessings.  So in the spirit of the holidays I have listed a few of my favorites:

*I’m grateful the cats pretend to enjoy it when Josh “plays” with them.  They have as much fun as they can stand before fleeing.

*I’m grateful that when Josh drives me to drink I can grab a petite café mocha and it still packs enough punch to hold me until bedtime.

*I’m grateful for Josh’s laugh.

*I’m grateful that when Josh breaks a C.D.  it’s usually one of my carefully planted decoys.  I’d rather him snap a blank CDR into pieces than one of my Led Zeppelin albums.  Most of our sacred, recorded material now lies in the safe. Including the wedding video he targeted three months ago.

*I’m grateful my son likes to hang out with me in coffee shops. And yes, I do cheat on the gluten thing sometimes.

*I’m grateful that Josh’s childlike, high-pitched shriek has been supplanted by a low, pubescent growl.  However, that yucky in-between voice can be ear-itating as well.

*I’m grateful that Josh’s twin sister, Jordan, still loves to show him off even when he struggles to embarrass her.  Her friends might not get the plastic fixation but they enjoy his sense of humor and his quirky new devil voice.  The growl is even better.

*I’m grateful my family’s still happy, and that we’re learning to enjoy the holidays a bit more every year. We’re not half as dysfunctional as most families I know during this season.   That’s the biggest blessing of all.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Tune in to NBC Nightly News, Saturday, January 1

December 30, 2010 3 comments

NBC Nightly News will air an interview Saturday with Peter Bell, Autism Speaks’ executive vice president for programs and services, as part of a segment on new laws that are going into effect on January 1, 2011. Bell will address autism insurance legislation that will become effective in eight states: Iowa, Kansas, Kentucky, Maine, Massachusetts, Missouri, Nevada and New Hampshire. These vital new laws, which affect state-regulated plans, will require health insurance policies to cover the diagnosis and treatment of autism spectrum disorders. To date, 23 states have passed autism insurance legislation. Autism Speaks is actively working to introduce new bills in an additional 15 states during the upcoming 2011 legislative sessions.

For more information on federal and state autism initiatives and to contact your legislators about much needed autism insurance reform, visit www.autismvotes.org

Check your local listings for NBC Nightly News.

Advice for Asking Questions and Advocating for Your Child

December 30, 2010 4 comments

We are so thankful for the outpouring of advice that has flooded in for us to share with the Autism Speaks Community. Who better to give advice than you all, the people that know best! We have heard from people on the autism spectrum, parents, siblings, teachers, therapists, and beyond. Your advice has been broken down into categories, and we will post accordingly!

YOU are your child’s best advocate. YOU are their voice when they need it. YOU know your child best. It’s not about them; it’s about your child. –Marisa

The best advocator and educator for your child is you. So educate yourself on different forms of therapy and treatments. Find a great pediatrician. And learn to laugh and enjoy the journey, that little person needs you. And love them for who they are…an awesome child who just happens to have Autism. –Deanna

Believe – in yourself, in your child, and most of all in the bond you share. –Keith

Early Intervention is Key.  The sooner your child receives therapy, the better chances the child has to grow. Check out the public schools to find out which has the best special education program and do everything in your power to go to that school. –Caroline

People with Autism do not plateau in their learning abilities.  They will keep growing and learning with time, patience, and consistency. That is what I have found in my son. –Doreen

Know your school system and the services that are available for you and your child.  Fight for your child; do not let the school system bully you or your child.  Insist that your child be allowed to become the best that they can be. -Linda

Do NOT assume that school personnel know more than you do about your child or autism.  I am a special education teacher whose certification program only briefly covered children with autism.  There is no state teaching license, in Wisconsin, for the area of autism.  Visit your child’s school, unannounced, and observe the programming and interaction between students and staff, students and students.  Many times special education aides are the staff members responsible for your child’s day-to-day functioning.  Do not overlook them – they are a vital piece to your child’s success. –Sheryl

Remember, you’re not alone.  There are many untapped resources to help fund your child’s road to recovery.  Know your rights, and the rights of your child when looking for these State, Federal and School District funded programs. -Ian

Have lots of mirrors and practice social situations BEFORE you go.  One step beyond social stories…don’t script them…’improv’ any new situations and talk about possible feelings and reactions.  Practice making your body match your feelings AND practice hiding your feelings when necessary. –Mary

I got the best advice to embrace my son’s autism.  Never give up, and embrace it along the way. –Kristi

Stop trying to fix them, they aren’t broke. –Ruth

You will hear so many theories and receive so many suggestions about therapies that you MUST try. Proceed with an open mind. Proceed with caution. Look for objective evidence (data, proof) of claims that treatments are effective. But above all, do what works for your child and your family. –Kelley

I wish I’d known colic is not “normal.”  Although food intolerances are not the source of our son’s problems, having stomach aches and headaches certainly made it much more difficult for him to focus on our world.  If your baby/toddler has stomach problems or cries for “no reason”, have him/her checked for food intolerances, and if you are breast feeding, eliminate the major problem foods from your diet (milk and gluten are a good starting point) to see if it helps.  It may have a major effect on your child’s behavior. -Deniz

Be patient, go with the flow, seek the best therapy you can find, and love them through it all. –Sharon

Following the GF/CF diet has cleared up my son’s cloudiness….he became much more interactive with his environment and family.  It is important to be 100% all day every day to get results!  Set a time frame and gently ease into the diet so your child does not feel penalized, there are a lot of great recipes available and people to support you! Remember to keep carbohydrate intake low if you are GF/CF! –Dens

Don’t blame yourself. –Jon

Autism in the News – 12.29.10

December 29, 2010 Leave a comment

Beal City: Small school, big on education (The Morning Sun)
Beal City Public School may be small, but historically, small forces have been known to surprise people.David conquered Goliath, Appalachian State beat the University of Michigan in football in 2007, and Beal City gave away more than $500,000 in scholarships to 40 students last year. Read More.

Expert on behavior coming to Virginia (Culpeper, Va.)
Temple Grandin is the featured speaker at Virginia Forage and Grassland Council and Virginia Cooperative Extension beef programs in January. Known as an international expert in animal behavior, Dr Grandin designs livestock handling facilities and is a Professor of Animal Science atColorado State.   She is scheduled as the keynote speaker at three regional beef meetings Jan. 18, 19 and 20 addressing the theme: “Essential Topics in Animal Agriculture: What Farmers Need to Know”. Read more.

Stating New Year’s intentions (Adalusia Star News)
My daughter likes calendars. She has one hanging in her room to keep track of the days I suppose. Since autism limits her ability to communicate, I can only guess why calendars are important to her. Read more.

Kindness toward needy family a Christmas miracle (Pocono Record)
This year I experienced the true meaning of Christmas. After discovering one of my students with autism was coming to school with no jacket, that Mom was struggling financially, and they were not going to be celebrating Christmas, I quickly jumped into action. Read more.

Friend to Friend: Students Help Their Special Ed Peers Learn to Fit In (Plainfield, Ill.)
Juniors Myles Walters and Deontre’ Brown stand before the class and demonstrate the proper way to greet another student. Read more.

Why is international research on the prevalence of autism important?

December 28, 2010 5 comments

“Got Questions?” is a new weekly feature on our blog to address the desire for scientific understanding in our community.  We received over 3000 responses when we asked what science questions were on your mind. We answered a few here and the Autism Speaks Science staff will address the other themes we received in this weekly post.

Evidence suggests that autism knows no cultural, ethnic, or geographic boundaries.  It affects 1 in every 110 children (or about 1% of children) in the United States and converging research findings from around the world suggest that autism may affect 1% of the global population.  However, most autism epidemiology studies to date have taken place in select areas of relatively developed nations and communities and have used strikingly different study designs that complicate comparison across studies.  Further, very little is known about the occurrence of autism in low-resource territories with limited to no public health capacity and infrastructure.  By working to address these barriers and to facilitate well-designed epidemiology research around the world, investigators can begin to answer questions surrounding the occurrence of autism globally.

International research can help address questions regarding the causes of autism and changes in its occurrence rates over time.  Specifically, by comparing autism prevalence across nations, researchers can generate clues about the involvement of genetic risk factors or environmental exposures. International studies create opportunities to study autism in different ethnic groups, in special populations (e.g., those that are genetically closely related), and among populations with specific or uncommon environmental exposures (e.g., certain pollutants) not found elsewhere.

Additionally, some nations have special resources, such as health registries and surveillance systems that can generate large datasets and make previously impossible studies on the causes of autism possible. Autism Speaks is currently supporting the iCARE project which combines data from Norway, Sweden, Denmark, Finland, Israel, and Australia to investigate pre- and peri-natal risk factors for autism.

Just as autism’s high prevalence rate drove its emergence as a public health priority in the United States, children in nations around the world will benefit when their governments recognize that autism is not a rare disorder.  Epidemiology research can help increase awareness about autism and help government agencies develop informed policies regarding care of individuals and families with autism and other developmental disorders within their country.

In addition to epidemiology, it is vitally important to investigate additional areas relevant to public health research and dissemination.  Specifically, understanding the economic impact of autism can help researchers and advocates gauge the impact of autism on societies, including the quality of life of affected individuals and families.  Equally important, this information can serve as a means to promote increased access to low-cost and widely available services, such as through healthcare insurance reform in the United States.  Additionally, the impact of early diagnosis and early intervention on the economic burden of autism can be assessed to further make the case for increased service support to both general and underserved populations in the U.S. and aboard.

International autism research will not only shed light on the scope of the autism challenge around the world but will also serve to raise global awareness of autism. As this increased awareness can help galvanize communities, epidemiologic findings have the potential to influence government, public health agency, and medical organization policies and practices, thus benefiting previously underserved communities. In low-resource countries in particular, these efforts will function to enhance the infrastructure and capacity necessary for ongoing autism research as well as for services. International research may also help uncover previously undiscovered genetic and environmental factors that contribute to the development of autism spectrum disorders, thereby further benefiting the scientific community and ultimately, affected individuals and their families.

Autism in the News – 12.28.10

December 28, 2010 1 comment

Family autism night gives support to Edmonton parents and siblings (Canada)
Sultan Armoush pinches, hits and shrieks. He jumps up and down on the couch, flails his hands, claps loudly, and paces back and forth around the room. The eight-year-old settles down momentarily when he is promised a chance to go swimming, but before long he is up again. Read more.

Autism and Holiday Bonding (EmpowHer)
These days I work with children who have autism or are on the autistic spectrum. Many of the students I work with are non-verbal, meaning they literally do not speak. During the weeks leading up to the holidays, a tremendous number of holiday-themed activities took place at our school; everything from stories to field trips about the holidays, plays and movies, art projects and discussions and even helping out at a food donation center. Read more.

Autism and stress: 5 excuses NOT to get your own therapist debunked (SF Gate)
I was a part time pharmaceutical rep with a one and a half year old at home the first time I got really sick, sicker than I had ever been. I remember walking up a flight of stairs carrying my detail bag full of Advil and The Today Sponge (yes, I know this dates me) and feeling so weak that I had to sit down until I felt strong enough to go down the stairs in search of a pay phone so I could call my husband. Read more.

Early Intervention critical for Autism Care (Monmouth, N.J.)
John Mattan is a child like many others. He enjoys playing with his little sister, Molly. He even drew a picture of the two of them holding hands with a caption that read, “John and Molly BFFs.” But John also has a disease that is becoming increasingly diagnosed — autism. Read more.

The 61-Marathon Man (NBC Los Angeles)
Sam Felsenfeld came a long way in 2010 — about 26 miles at a time. He ran 61 marathons as part of “Operation Jack,” an effort to raise autism awareness. Read more.

Take the icy plunge for a good cause (Staten Island, N.Y.)
It’s the cool thing to do. Keith Gill of Willowbrook will be starting the year off with a good deed and he is encouraging others to join him. It does, however, involve braving the elements. Read more.

Advice for Maintaining Relationships and Staying Connected

December 28, 2010 2 comments

We are so thankful for the outpouring of advice that has flooded in for us to share with the Autism Speaks Community. Who better to give advice than you all, the people that know best! We have heard from people on the autism spectrum, parents, siblings, teachers, therapists, and beyond. Your advice has been broken down into categories, and we will post accordingly!

Having a child on the spectrum can feel isolating enough.  Don’t be afraid to tell people about your child.  Everybody knows someone touched by Autism or Asperger’s! You never know how you might help someone else by simply opening the door. -Heather

As a sibling of someone with autism, the best advice that I could give is to teach the other children or child in your family what autism is and how to be the best support and role model for their sibling with the diagnosis. Ultimately, they can be a wonderful teacher, peer model and friend to your child as they grow up into adulthood and contribute to keeping the family strong through this journey. – Elif

Being a sibling to an Autistic child, especially being the only and oldest (such as myself) I recognize the importance of family relationships. Be honest and involve siblings with all decisions. Offer lots of private time because they do lose out on experiences when bringing an Autistic child to places such as Disney or even having friends over are too stressful. Be upfront about the responsibilities we will someday face but be cautious. I realized at 12 that someday my parents will be gone but small steps ease this realization. An open dialogue and allowing siblings to have a passion or hobby they can be immersed in is helpful. You may sense resentment at times and things may be said but never doubt that we love our siblings and will do anything for them. –Natalie

When our grandson comes to us after school feeling fried and close to a meltdown, I take him aside in a peaceful spot and just hug and hold him and let him know how much I love him. He comes around quickly and is happy again. –Donna

These children require a lot of attention every day but with the help of their parents, schools and professionals they can have a successful life. We are all in it together. –Rebecca

Remember to take time for yourself. A happy, healthy mom or dad is so important for any child, especially one on the spectrum. It’s usually you and your kids against the world, so take care of yourself, so you can take care of them. –Sarah

Don’t treat it like the end of the world, because it is not! It will always get better and easier with the help of family and friends. –Erin

It is not the end of the world. As our world was turned upside down I remember asking myself “why” “why us” where did we go wrong, what could we have done different. The truth of the matter is there is nothing that we could have done different; there is nothing we could have done to prevent this from happening to our daughter. Get together with parents in your community with ASD children and talk, cry, laugh share stores find someone on line that you can connect with DO NOT TRY TO DO IT ALL ALONE!!! –Katie

E Street Care’s Benefit Concert and Silent Auction

December 27, 2010 4 comments

This guest post is by Dana Morris, the Events Director of the Chicagoland Chapter at Autism Speaks.

E Street’s owners Tom and Kathy George don’t have kids of their own. But you wouldn’t know it by meeting them and seeing their genuinely warm spirits and caring personalities. Tom and Kathy have been dressing the North Shore of Chicago in top premium denim since 1990 and have made their place in the community. On Friday, November 12th they hosted their second annual Care Concert, which benefitted Autism Speaks and Syd Rocks, another local charity. It was a cold and rainy night but you wouldn’t know it by entering the festively tent complete with holiday lights. Over 200 guests enjoyed fantastic food and beverages while rocking out to the sounds of Danny Chaimson and the Gold Coast All Stars, who kept the dance floor filled all night. A fantastic silent auction featuring local businesses rounded out the evening with offerings from E Street, a signed guitar and a photo portrait sitting.

We came to know Tom and Kathy through Spencer Savitz and the Savitz family, whose walk team, Team Tyler, over the years has raised over $500,000 for the Chicago walk. Spencer’s friends sold raffle tickets as well as custom Autism Speaks bracelets all night and pretty much didn’t take no for an answer. The E Street family has been a wonderful partner to the Chicagoland Chapter and continues to help raise from for Autism Speaks year round –complete with our logo on the doors of their locations in Chicago and Wisconsin. We cannot thank E Street Denim and the Savitz Family for their outstanding commitment to Autism Speaks.

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He Ain’t Heavy, He’s My Brother

December 26, 2010 4 comments

This “In Their Own Words” is by Alysia Butler. She is the mother of three, and her middle son Howie was diagnosed with an autism spectrum disorder at age 3 and a half. You can read more from Alysia at Try Defying Gravity.

It started with paper snowflakes.

We were over at our friend’s house for a pizza party, and my oldest Gerry and his friend were creating paper snowflakes.  They made them in all shapes and colors and pretended to sell them to us from their “artificial snowflake store.”

On our way home, Gerry was working on one of his money making schemes, trying to figure out how to make $400 – enough to buy the Lego Death Star.

“If I sold one paper snowflake for a penny, how many would I need to sell?”

We started to do the math with him in the car when he interrupted us.

“Could I sell them for charity?”

Of course, we answered, knowing that there would be very few people who would buy an eight-year-old’s artwork, but we were going with it.  I started to explain what a charity was to give him some ideas.  People donated to charities for causes that they believed in.  There were charities to help people who didn’t have enough money to eat, charities to help the environment, and charities to help find cures for diseases.

“Is there a charity to find a cure for autism?”

I exchanged sideways glances with my husband.  “Of course,” I said.

“Then I want to do that one…”

(my eyes are getting teary at this point)

“…because I want them to find a cure since Howie’s been getting a little wild lately.”

We quickly ended the conversation in the car and I told him we’d talk about it more when we were home.

A few hours later we were getting the boys ready for their showers.  Gerry was sitting with me in the baby’s room while Howie was with my husband.  I told Gerry why we needed to end the conversation in the car.

“Howie doesn’t know he has autism, so I didn’t want him to get confused or upset by what we were saying in the car.  At four, he’s too young to understand.”

“Well, when will he know?”

“I’m not sure,” I told him, “Maybe when he’s older like you he’ll know.  But right now we don’t want him thinking that he’s any different than anyone else.”

As soon as it came out, I knew those words were a mistake.

“What’s wrong with being different?” Gerry asked.

I started to backpedal.  All the “there’s nothing wrong with being different” phrases started stumbling out of my mouth.

“I feel different because I’m Jewish.  Everyone else in this town celebrates Christmas.  And you tell me there’s nothing wrong with that.”

“I chose the wrong word when I said I didn’t want Howie to think he was different.  You’re right, it’s good to be different and we should celebrate those differences.”

He looked at me thoughtfully.  “Yeah, being different is good. You wouldn’t want to dress the same and act the same way as your best friend, because then no one would want to be your friend because they would all think you were just copying him.”

He continued with, “There’s good different and bad different.  Good different would be if someone had a hard time paying attention in class and they needed something like a pencil to fidget with to help them, that would be ok.  But if someone wasn’t paying attention just to be annoying, that wouldn’t be ok.”

“Right,” I said.  “People learn in different ways and sometimes need things to help them.  But if someone was disturbing the class just to be funny, that wouldn’t be good.”

Gerry paused for a minute to think about this.

“Is Howie in a special class for kids with autism?  Is there a group for kids like him to get together like I do for SibShop?”

I explained that Howie was in an inclusion class at his preschool with kids of all different abilities and he meets with his teachers and other kids to learn special skills to help him pay attention in class and at home.  Different from SibShop, I said, but still learning important coping skills, just like Gerry was in his group.

“Are they helping Howie to stop making all his noises?”

Big sigh. “Yes,” I said.  “He makes those noises when his body doesn’t feel right and they are helping him understand what to do with his body when he feels that way.  We’re working on that at home too.  So when we see his body moving really fast or he’s making a lot of noises, we let him run laps in the house, or get his weighted blanket.  Or have a pillow fight with him.  Those things make his body feel better.”

Gerry looked at me quizzically.  “Pillow fights help him feel better?”

“They do.  So if you see him moving really fast in his chair or making a lot of noises, you can always ask him if he wants to have a pillow fight.  Not a really rough one, but a gentle one.  It might help him.”

He was quiet for a few minutes.

“What if I invented a machine that was a big circle loop and pillows hung from it?  It would go around in a circle and Howie could stand in it and get hit by the pillows. That would help him, right?  I would make sure it was 2 feet off the ground so if he fell he wouldn’t keep getting hit by the pillows.”

(getting teary again)

“I think that’s a great invention.  I’m sure he’d love it.”

“Probably pretty expensive to make, though,” he said, pulling the covers up to his neck.  “I’ll have to think about it more.”

The next morning, I came downstairs to find blue paper snowflakes all over the kitchen table.  And as I sat in the chair, rocking Howie and giving him squeezy hugs with all my strength, Gerry worked furiously with the scissors making all different patterns of snowflakes.

“You know, Mom.  No two snowflakes are alike.  They are all different.”

That is something to celebrate.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Advice to Help Planning for the Future

December 24, 2010 5 comments

We are so thankful for the outpouring of advice that has flooded in for us to share with the Autism Speaks Community. Who better to give advice than you all, the people that know best! We have heard from people on the autism spectrum, parents, siblings, teachers, therapists, and beyond. Your advice has been broken down into categories, and we will post accordingly!

It gets better! Take one day at a time and remember that there can be a wonderful future for these kids. Love them and support them as much as possible. –Leann

The best advice I can give a newly diagnosed family is to have a plan, be consistent, and take it one day at a time. And always remember, everyday is progress! –Whitney

Although you need to plan for the future, don’t get unnecessarily “worked up” worrying about all the various “what ifs.”  Narrow your worries to immediate concerns. The “what ifs” may never materialize. Trust in yourself that you will never accept the way someone tells you to do something as being the “only way”! I have found the best result in everyday life has come from “thinking outside the box”. You must put yourself in their shoes and feel, smell, see, hear what they do and then you can address the situation. – Kimery

Be ready to deal with what comes in the future. –Joy

We rode the train to our local zoo and when I corrected my son as to which side to get off the train he had a huge tantrum, lots of people staring it was horrible.  I told his teacher about the incident and she said, “Lora, you can’t let what other people think EVER bother you, they have no idea what you are going through so just forget them!”  The next time we went to the Zoo my girlfriends asked if I wanted to “avoid” the train and after a moment I said, “No.  I want to go straight to the train”.  I am not putting him in a bubble.”  He never had a problem with the train since.  Live your life and don’t let other’s stares or commentary get you down.  Their judgment, their problem. –Lora

Be patient, go with the flow, seek the best therapy you can find, and love them through it all. –Sharon

Sometimes you just need treat them like they are normal… they act up discipline them, they do something great give them a kiss and show them all the time they are loved… –Marlene

I am not a parent but I do work with kids with autism. Just remember treat them with respect and treat them as you would any kid. –Debbie

Be your child’s own “job developer”! When it comes to your son/daughter, who knows them better than you do?  Think expansively when considering an workplace area that may best suit their needs, and then network, network, network! Never give up! –Ian

It isn’t a sprint. It’s a marathon.  Think about the big picture. -Robin


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