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Five Benefits of Growing Up With an Autistic Sibling

December 15, 2011 4 comments

Dana Fialco collaborated with her sister Tara, who has autism, and their parents to create the “Starabella” three-book audio series. Visit her online at www.starabella.com.

Every sibling relationship is unique, but having an autistic child in a family can impact the entire family dynamic. While much attention is paid to the challenges and difficulties faced by parents and siblings of autistic children, growing up with an autistic sibling also offers many advantages and hidden treasures that can help shape an individual’s life and character. Here are five benefits of growing up with an autistic sibling:

1. Perception. Having an autistic sibling means growing up alongside someone who sees the world in a unique, individual way – a way that is often different from the mainstream population. It also means living day-to-day with someone who behaves somewhat-to-very differently than the general population. The sibling without autism learns very early on that the world we live in is not black and white; there is not necessarily a right and wrong way to do all things. With solid parental guidance, siblings come to learn that individuality is not scary or wrong, but valued and beneficial to society. The neuro-typical siblings go into adult life with open minds and the ability to see the world from many views. Not only does this shape an individual with compassion, empathy, and acceptance of differences, but it also inspires innovation and creativity. The siblings can become real thinkers who see beyond face value, as well as diplomats who can navigate and reconcile conflicting points of view.

2. Perspective. Growing up with an autistic sibling means watching your sibling face each day with more courage and strength than most of us can fathom. Whether facing ridicule and cruelty from others or simply trying to get by in a world that was not built to accommodate their needs and way of thinking, kids with autism experience constant challenges. It’s difficult to witness this on a daily basis and not grow up with great perspective about what actually constitutes a problem. Granted, a pitfall of some siblings is to decide that their own real problems or feelings do not warrant attention or concern. However, with maturity and proper guidance from caring adults, the siblings can grow into adults who can balance experiencing their feelings with not overreacting to trivialities or falling prey to self-pity. This perspective allows them to remain calm during difficult situations, and to be thoughtful rather than reactionary.

3. Leadership. Siblings of autistic children often have to mature very early – arguably, earlier than should be required. By necessity, siblings often must assist their parents in helping, providing care, and teaching. These households can be chaotic, and siblings must develop a real inner strength to deal with the chaos, emotions, and frequent uncertainty. In families, siblings often collaborate – working on projects, carrying out chores, or playing together. Siblings often see each other’s capabilities and way of thinking from a different perspective than their parents or teachers. Whether older or younger, the non-autistic siblings naturally gravitate to leadership roles in the sibling relationship. They learn to stand up for their sibling to others, and advocate for their sibling’s potential to be seen and met with proper challenges for growth and success. Whereas this can present difficulty for some, in the end, it shapes strong adults with tremendous potential for leadership. They can grow into leaders who are comfortable navigating uncertainty and still delivering results; they become comfortable leading and motivating others, and they learn to see and foster the potential in those they lead. They see differences in working styles and ways of thinking as welcome attributes rather than frightening, difficult to manage, or unacceptable. The siblings become strong, compassionate leaders who are natural innovators, protectors, and advocates.

4. Courage. By necessity, growing up with an autistic sibling teaches a child to have the courage to stand out. Venturing into society with someone who does not necessarily conform or can have unfiltered reactions means there will be moments when the entire family stands out, whether they like it or not. For children and teenagers this can sometimes cause embarrassment. However, it is an important part of their development that will yield rewards their entire lives. It helps the siblings learn to be themselves and express their ideas, and not be swayed by the crowd. It helps them see public perception for what it is, and to know when to take or leave an outside judgment or opinion. A lifetime of developing strength and compassion provides the courage and pride to face the world head-on.

5. Creativity. Many of the other listed benefits have underlying tones of creativity, or produce creativity as a byproduct of the other attributes achieved. Siblings often have a unique way of communicating – sometimes even developing a shorthand or symbiotic relationship. Learning to communicate effectively with an autistic sibling takes a great deal of creativity. Autism manifests differently in each person, and there is a broad spectrum. However, communication and social awareness are almost always affected in some way. Siblings grow up learning how to organically communicate, reach, and connect with their sibling. Because those with autism often have unique and varied ways of thinking and seeing the world, their neuro-typical siblings often benefit from a very creative point of view. Simply being so intimately engaged with a person lacking the tools to benefit from a very creative point of view. Simply being so intimately engaged with a person lacking the tools to temper individuality through conformity stretches the mind and creativity of a sibling. Many people with autism also have some extraordinary abilities. Not all are creative, but some do have creative talent, be it visual arts, music, writing, or simply expressing a worldview that is unique and insightful. An added benefit to creativity is when a sibling grows up in a house filled with this art. Even a non-creative interest exposes the siblings to aspects of the world that they would not normally delve into, and can feed creativity. If the siblings happens to share a creative interest, both or all the siblings’ creativity and awareness grows together. Some siblings even apply their creativity to solving scientific and sociological puzzles, including the puzzle of autism.

Of course, all family dynamics and ways of growing up present their own challenges as well as benefits. Siblings of autistic children naturally develop the tools to see the challenges thrown their way in life for the gifts they can be. They develop the strength and creativity to use those gifts towards compassionate, collaborative, individualized success.

“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.

Why I Listen

August 12, 2011 3 comments

My name is Cola.  One year ago I became Auntie to an adorable 4-year old little drummer boy I met in a restaurant one evening.  His expressions of life beat to a rhythm apart from, yet inclusive of the majority. When we began to communicate he echoed my words and often released my hugs before I could inhale the fragrance of his beauty. Initially, I would find myself feeling overwhelmed and crying because I felt helpless in my ability to connect with him, but as we began to spend more time together, I began to learn that entire he said when he did things repeatedly. My heart began to  translate what he wanted, my mind began to seek all that he needed and my passion said we could have it all, by any means necessary; realizing that in order for us to have it all, we would have to employ the skills of everyone. So To start we organized playgroups with my nieces and nephews his age. We began reading very short stories during story-time, modeling expressive language and phonetics for him to speak and kept redefining transition techniques along with a host of other things, as because our little one’s actions of autism where loudly speaking, saying:  “I have all that I need to be a successful, independent, strong human being, but I need you to intervene and provide me with the resources to support my personal developmental needs.”  In that moment, autism spoke, and as we listened, and boy oh boy did our little drummer boy began to respond and change recognizably.

The echolalia diminished, his social skills increased, his transitions became age-appropriate and he began talking so much we had to ask him at bedtime to have quiet-time so we could go to sleep. I could go on and on talking about this budding little one, sprouting as if he were an oak tree but the pages of this blog would be overwhelmed and we would not be able to share with you some important chords to make beautiful music with your little ones who so anxiously wait to plant seeds of Oak Trees.

Autism is a voice of the adorable little ones with a unique way of communicating. There is no such thing as “average” when it comes to any child and there is no “norm” when it comes to any human being but what there is, is a majority. Yet, majority isn’t necessarily what’s right and minority isn’t necessarily what’s wrong; however, there are just defining characteristics of differences that make each individual a unique expression of love.

My profession as an Early Intervention Program Coordinator for children ages 2-5 with developmental delays and disabilities lends to me a world of discovery. A treasure of resources, I aspire to share with many. So, when I learned of [Grammy-nominated  R & B singer] Bilal‘s mission to use his platform of music to raise awareness about a subject dear to his heart, I could not pass up the opportunity  to partner my knowledge, passion and energy to expand, neither could I ignore the synchronized happenstance fact that the name of Bilal’s tour is the nickname we call our child. [For more information on Bilal's LITTLE ONE SUMMER TOUR for Autism Awareness, click here.]

On this tour we will share the developmental milestone check list and local resources. We will link you to appropriate services for your little ones to experience his or her civil right to a “Free Appropriate Public Education”. We will also share contact information of proven advocates and tie your heart strings to strong connections with other families who share your passion and vision of a beautiful landscape for your little one’s budding oak tree to grow into a landmark that will outlast generations and endure the phases of growing into a strong, healthy, independent human being.  So, when you find yourself pondering the question of why you pour out your heart, continue to lend your tireless efforts and do what you do in support of these unique little ones, the answer will always exist in the silent voice that whispers, “AUTISM SPEAKS!”

This entry is dedicated to Dominic, Our Little One and his Mother Marta.

Cola

Cola is also a children’s author and motivational speaker. Email her at: phylliscola@gmail.com www.childrenmeanttheworld.org .

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“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.

A Loving Aunt Includes Autism Speaks in her Will

May 3, 2011 1 comment

This blog post is written by Sharon of Rochester, NY.  Her nephew’s son has autism and she has decided to honor him and his parents by including Autism Speaks in her will.

I am an Aunt of several nieces and nephews, including one who has a child with autism.  I have such a love for children.  I can’t do enough for them.  Unfortunately at a very young age, I found out I couldn’t have children.  So when children come into my life, I am very touched by them and cherish our time together.

In September of 2008, I was diagnosed with Lymphoma.  Never in a million years did I ever expect this news on a sunny Sunday afternoon.  Not knowing what my future held for me, I decided to get my things in order, meaning my will and what my wishes would be if I were ever to pass.  I feel everyone should have something in place for the future no matter what, so that your wishes are met.

Given that I do not have children of my own, I put some serious thought into who to leave my inheritance to in my will.  Finally, I decided, let me contribute a percentage of it to Autism Speaks.  I have been touched by several children with autism and was always amazed at how gifted they can be.  A young gentleman from my church congregation is a senior in high school this year and will be going on to a local elite music school for college.  It just totally amazes me.  My nephew’s son who just turned 7 was diagnosed with autism at an early age.  I was so moved in how my nephew jumped in and got involved with Autism Speaks.  They started doing the yearly walks and they came up with a team name called “Sage’s Unit.”  They rally a huge team to do the walk every year.  Sage loves to draw and my nephew says that one of the things he is best at currently is golf.  AMAZING!   Sage’s parents try to keep his life as normal as possible.  He is involved in lots of activities outside of the home.   He is doing really well in school and loves it.  I am very moved by all of their accomplishments and the support they receive from other families who have children with autism.

I realized that one way I can make a difference for Sage and my nephew is by adding Autism Speaks into my will in their honor.  This way, I know there will continue to be research on autism to help Sage as he gets older.

My favorite saying for my nieces and nephews is:

 Nieces and Nephew are the Children that we Borrow,

Intending not to raise but merely love,

Ever watchful from our open window,

Caring deeply at a slight remove.

Everywhere you go, my love will follow,

Still part of you wherever you may live.

I know whether I am fortunate enough to live out my life or become an angel in heaven, they will always be cared for by my donations.

If you have put Autism Speaks in your will or would like to learn more about doing so, we hope to hear from you.  Please contact Christine Pecorella at 646-843-6676 or Christine.pecorella@autismspeaks.org.

Parenthood – “A House Divided”

February 2, 2011 28 comments

On this week’s episode, “A House Divided,” of Parenthood, Zeek takes Max on a camping trip; it’s a Braverman family tradition.While Adam and Kristina are nervous that Max being outside of his normal environment will lead to an unsuccessful trip. They provide a manual for Zeek, but he is extremely offended; he can camp with his own grandson.

Out in the wild, Zeek and Max arrive at the campsite. Zeek asks for Max’s help setting up the tent, but can’t get his attention or help. Zeek tells Max stories about his camping trips with the other Braverman men. When Max asks if they have done everything they were suppose to do, why can’t they go home? When Max doesn’t like Zeek’s answer, he has a full meltdown and Zeek doesn’t know what to do.

While at Julia’s, Zeek calls Adam for help with Max. Adam asks to talk to Max immediately. Zeek confesses to not reading the instruction manual that Kristina provided. Adam lays it on Max and gives him a choice. He can come home, but if he does he’ll miss out on something really special. Ultimately the decision is Max’s to make. When Max tells Zeek they can stay, Zeek is amazed. Adam and Kristina wait at Zeek and Camille’s for their arrival the following morning to welcome them home with open arms. Zeek has a touching moment with Adam tells him what a wonderful boy Max is.

How do you cope when your family doesn’t understand you or your child’s struggles?


Watch the full episode of Parenthood here

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.

How can families participate in research studies?

December 21, 2010 Leave a comment

“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.

Great question! We hope more families wish to get involved in research. One easy way to get started is through an online portal called the Interactive Autism Network (IAN) at ianproject.org. This site allows you to participate in research from your home. You can also find studies and participate in programs supported by Autism Speaks. If you are interested in a clinical trial (which is not just about treatment, but also diagnosis, identifying subtypes, etc.) you can find more information at clinicaltrials.gov.

In Their Own Words – One New Message

August 28, 2010 27 comments


This “In Their Own Words” is by Laura Traw, who has a son with autism.

Sometimes I have a hard time watching shows regarding autism. No matter how I prepare myself, I find myself either turning off or walking away for awhile, then always coming back. My thought process always seems to be, “I am living this life. It’s too painful to watch someone else go through it as well.”

When HBO aired “Temple Grandin” (great job, by the way), my husband and I (on the west coast) watched the east coast feed while my best friend, who is in Tampa, watched at the same time.  Periodically, we would text one another, something like this, “how r u holding up” Me: “so far so good”. Then, there is a point in the movie when the doctors told Temple’s mother that Temple needed to be institutionalized. I don’t remember the exact correspondence between the two but the message was all too clear. There was no cure, no hope.

Another text came through, “are you ok” No, I’m not.

I looked at my husband, tears streaming down my face. I felt like someone was standing on my chest; I couldn’t breathe and I could not stop this waterfall. What was happening to me?

“I can’t watch this,” I said, as I got up and started walking out the room.

He stood up and came over to me. I could barely make his face out, because my eyes were covered with tears. He hugged me, really hugged me – which was good because I felt like I was going to collapse.

I put my head in his chest and sobbed, “I just can’t.” Without hesitation he stopped the DVR, and said “It’s okay.”

It wasn’t “okay” – this is our life!

Maybe I’ll learn or see something that will help, that I can do, I’m thinking. Why was I feeling like this? I have to pull it together, I have to be strong for my son. How can I fight this battle if I can’t sit through a movie or a show about autism?

My phone vibrates, another text, “this is so good, what an amazing movie.”

Amazing? This isn’t amazing – nothing about any of this is amazing. I text back, “had to turn off, can’t watch.”

Does no one understand this? I know this is a great story and I know she has made such strides and is a voice of hope, reason and even understanding to this disorder.

What is wrong with me?

I am strong. I have been strong. I will, and have fought for my little guy and I dare anyone to tell me we can’t or he won’t be able to do something because of autism.

Why can’t I watch this movie?

I leave the room, utterly and completely defenseless of my own thoughts. I start doing laundry, anything to keep me busy. My husband comes in. I keep my head down, because I know I am going to start crying; I am weak.

I can’t be weak.

“I love you,” he says, standing in the doorway. I pour the laundry soap into the washing machine; I still can’t look up. “I love you, too,” I say, my voice quivering.

He sets my phone on the counter and there it is, telling me, “one new message.” I read it – “you are an amazing mom.”

That’s it, just that.

How is it that when I am so weak, my husband is so strong or although miles and miles apart, a best friend still knows just what to say?

I don’t know, but with that and about an hour to pull myself together, I sit on the couch with my husband holding hands. Sometimes I’m clinching.

We laughed, we cried and WE made it through the whole movie. It’s still hard for me to watch some things, but I am so thankful for these amazing people who open themselves and their lives up for the rest of us to see, hear, read and learn from. We are not alone, I am not alone.

It is because of such courageous people, my family, my husband and, yes, my best friend that I, too, have opened up about this journey.

These are raw emotions, me, us, our son. There are some moments when I feel like I just can’t make it one more minute. Then there are moments like the other day when I pointed to the color red and my son said, “RED.” Or last week when we were at the beach and he could not get dirty enough. We didn’t have to spend hours wiping every piece of sand off of him, or wash his hands numerous times to make sure there was no more dirt. A big day for us!

My heart hurts. I get angry and yes, sad. I am strong, but sometimes I feel defeated. I cry alone, because I don’t want anyone to see my tears. But, I open myself up because I know that I have a great family, wonderful friends, a husband that I adore, a son that is the love of my life; and yes, I am an amazing mom!

“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.


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In Their Own Words – Doing the Odd Job

July 8, 2010 12 comments

This “In Their Own Words” essay was written by Rose Wade. Rose has two children, including a teenage son with autism. She is a military wife and the founder of The Robin Hood Lego Campaign Advocating Autism Awareness and Lego Therapy.

Summer is here. Officially, as the last day of school for my kids was on Thursday. I know a few moms whose kids have been out for two weeks already. And to think that our school district didn’t even have snow days to make up. Otherwise, I’d be poised at the door until July 1st, waiting for the first opportunity to toss the kids into the pool.

Ah, the pool. We have a new one. One of those ready-to-pop plastic deals with three colorful rings that have to be blown up. By mom. That pretty green of the plastic doesn’t make the job any more fun. But, we have to go with the temporary pool for now. We’re moving soon and I like to pack light. Given my husband’s propensity for shopping, I’m always recalculating the household capacity for storage. “No, hubby. Don’t buy something new until you get rid of something old first. And quit looking at me that way or I’ll start charging you for storage.”

Thankfully, my dear son, Matthew, managed to traverse our very full garage to find the pump we use on our camping gear. Matthew has yet again saved me a bit of work. “Mom, why is your face so red.” “All of my breath is inside the pool, dear. No, don’t…*sighs…step on it.”

A few minutes of the pump to the rescue and Matthew gets the biggest smile of satisfaction when he’s able to be helpful to someone. He’s also sure to make sure you know it. Matthew won’t hesitate to ask if I want to thank him for helping me. “Yes, darling. I always do. Thank you.”

The day is saved! Almost. The lawn needs to be cut before the pool can be filled with water, children, toys, and begin its rapid approach to untimely holes and quick patch jobs. “Pass the duct tape, please.”

Matthew has decided that he wants to learn to do ‘odd jobs’ so he can earn extra money during the summer. The older he gets, of course, the more he wants to be like his dad. Well, his dad is often away from us for deployments. Yes, it’s just me and the kids. And my son who has autism wants to be man of the house.

So, still flying high from ‘saving the day’, Matthew is confident and ready to tackle learning to use the lawn mower.

Well, my backyard is currently more of a jungle, thanks to frequent rainstorms and an uncooperative mower that allowed the grass free reign to grow to two feet high. And Matthew wants to mow it. It’s like me at 14 nagging my dad to teach me to drive. I didn’t care that there was a foot of Chicago snow on the ground. Not the best conditions, but try rationalizing that to a determined child.

But, I’m not one to squash my son’s enthusiasm. Especially when so few activities light up his eyes and hold his interest. Anything that involves actually venturing outside of the house is usually rock-bottom on his list.

With Matthew looking on eagerly, I went through the finer points of how the lawn mower works. Step-by-step. Fill the gas, check the oil, prime it, etc. It’s somewhat difficult to do since Matthew will ask a question while I’m in the middle of an explanation. I’ll have to redirect him and start over.

I found it takes a lot of thought to explain how and why the lawn mower works, what not to do, how to be cautious. All the while making certain he understands and without overloading him with information.

Nearing 13 years old, Matthew is almost a teenager. But autism renders his behavior and actions immature. I know how old Matthew is in years, but I see him approach a gas-guzzling, loud, bladed machine, and I see the innocence of a five-year-old child.

It’s funny to me that Matthew seems confident with the lawn mower itself. He’s a big kid. He gave the pull a half-hearted yank. “Matthew, you have to do it in one pull or it won’t start.” “But mom, I don’t want to break it.”

So, he’s not afraid of the mower. But he hates touching the grass. He thinks it’s gross. Instead of touching the grass, grabbing it and helping empty the bag into the bin, he tried to use the end of the rake. “No, Matthew. That won’t really work. It’s just grass. You can touch it.” I had to repeat and demonstrate five times before he would attempt it himself.

Matthew is in an odd stage, for me, I realize as I watch him tentatively push the mower over the grass. I have to applaud, encourage, and teach him, feed his enthusiasm. And I have to balance my caution of teaching a child to use a lawn mower with teaching a child with autism to use a lawn mower. All of this has to be done to nurture his firsts and his accomplishments, without reverting to the over-protective hovering mommy that I often have the urge to be.

Matthew has managed to mow a small section of the lawn. He’s excited to tell his dad about it during the next phone call. While writing this post, Matthew knows it’s about him. He reads over my shoulder. I asked him to hold off questions until after I’ve finished or else it’ll break my concentration. He began to pace back and forth. Then stopped. “Mom, can I go finish mowing the lawn?”

I know, a lot of parents would jump for joy to have their kids volunteer for the task. I’m sure once the novelty wears off and he’s had to mow the lawn a few times, he’ll start disappearing when it needs to be done. Or bemoan in full teenaged fashion and ask for a raise in his allowance.

We’re not there yet. I have a child with autism who needs a touch more guidance through his accomplishments. I’ll enjoy his enthusiasm while I can. For now, he’s actually outside, raking grass. As long as he doesn’t have to touch it.

The next accomplishments are already on the horizon.

“Mom, when I’m 14 are you going to teach me to drive your car?”

“Um, yes, but maybe not my car.”

“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.

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Grandparents: Near or Far, Still Amazing

June 1, 2010 7 comments

This is a guest post by Cheryl Cohen, who is the Online Community Director of IAN Project at Kennedy Krieger Institute.

Here’s an interesting family photo from 1934. In it is my mother at age four, my grandmother, my great-grandmother (who was partially paralyzed by polio), and my great-great grandmother. It was the Depression. These four generations lived together in a small row house in Philadelphia. Like many other multi-generational households, they cooked and ate meals together, shared economic resources, and raised the children. Though the percent of the population living in multi-generation households has declined since then (although it is now on the rise), grandparents and other members of the extended family still play a large role in helping raise children – especially when a child has special needs.

With the help of grandparents, who wanted to share their experiences and learn about the role of other grandparents, the researchers at the Interactive Autism Network (IAN) developed the Grandparents of Children with Autism Spectrum Disorders Survey. We knew that grandparents played a major role in helping their adult children and their grandchildren. But, we wanted to learn (using scientific methods) how grandparents support the emotional and economic needs of their adult children and their affected grandchildren. We also wanted to know how having a grandchild with ASD had changed their lives.

More than 2,600 grandfathers and grandmothers of grandchildren with ASD participated in this survey, which we administered on the Internet.  They came from all 50 U.S. states and the District of Columbia, and every kind of locale, with 17% from cities, 23% from rural areas, and 60% living in the suburbs. They represented a wide age range, from people in their 40s to people in their 80s, and had varied educational backgrounds.  Though the goal of the survey was to gain knowledge about the nature and extent of the role of grandparents, we also wanted to find out the support, services, and information needs of grandparents.

Participating grandparents told us some very interesting things:

  • So that the grandparent could help his/her grandchild, 20% of the families had moved closer to each other. Nearly 8% had combined households.
  • About 30% were the first to notice that there was a problem in their grandchild’s development.
  • Nearly 90% felt that the experience of facing their grandchild’s situation together had brought them and their adult child closer.
  • About 6% of the grandparents told us that a family situation had become so untenable they had taken on the role of parent.
  • While 86% of the respondents were coping very well or fairly well, 14% reported that they were coping poorly.

Find out more IAN’s two-part series, Grandparents of Children with ASD.

Learn about the Interactive Autism Network (IAN) and how you can participate.

Interested in statistics on the multi-generational household in the United States? Visit the Pew Research Center’s The Return of the Multi-Generational Family Household.

Families and Friends Network at IMFAR

May 24, 2010 7 comments

Peter Bell is executive vice president for programs & services at Autism Speaks. He is also a founding member of the Diversity Committee for INSAR and will serve as the co-chair in 2010-2011.

From its inception, IMFAR was a meeting that attracted hundreds of scientists, researchers, clinicians and even students who were interested in advancing the knowledge base of what autism is and how they can help improve the quality of life for those who live with the condition. And though the idea of IMFAR was originally conceived and funded by the two leading national advocacy organizations at the time (Cure Autism Now and the National Alliance for Autism Research, both of whom merged with Autism Speaks) and the M.I.N.D. Institute at UC Davis, the annual meeting quickly became the most popular venue for autism researchers to present their findings, exchange ideas and develop new collaborations to advance the field. Autism Speaks is a major sponsor of the conference.

Eventually a membership organization was formed called the International Society for Autism Research (INSAR) to help advance the quality, size and scope of the annual meeting. In 2008 INSAR created a new peer-reviewed scientific journal, Autism Research, to expedite the publication of key findings specific to the autism community. Without a doubt, IMFAR and INSAR have both been instrumental in developing the field autism research during the past decade as evidenced by the 1,700 participants who attended this year’s meeting in Philadelphia.

As one would expect, many families and individuals who are affected by autism are deeply concerned and interested in staying on top of the latest advances in autism research. It’s also important for researchers to get input from the patient population they serve. Each year, IMFAR attracts a contingency of stakeholders who want to stay abreast of these developments. Last year, INSAR formed a Diversity Committee to increase membership diversity for INSAR as a whole and to increase the participation of family members and individuals with autism as well as those visiting from other countries at its annual meeting.

This year, the Diversity Committee hosted a special luncheon during IMFAR called “Family & Friends Networking Luncheon.” The event was sponsored by Autism Speaks and I helped moderate the discussion. The Diversity Committee selected a panel of researchers from this year’s Invited Educational Symposia who included: Daniel Coury, M.D. (Nationwide Children’s Hospital), Craig Newschaffer, Ph.D. (Drexel Univ.), and Sarah Spence, M.D., Ph.D. (NIMH). In addition, INSAR President David Amaral, Ph.D. (UC Davis) was on hand to provide an overview of autism research in general as well as the history of IMFAR. He welcomed the involvement of families and individuals affected by autism and reinforced their importance in the planning of future meetings.

Dr. Coury, who is also the Medical Director of Autism Speaks’ Autism Treatment Network (ATN), shared details about the ATN and some of the exciting research findings that were presented at this year’s meeting. Many of the attendees were pleased to hear about the focus on GI and nutritional issues, sleep abnormalities and metabolic disorders that are present with many people living with autism. Dr. Newschaffer shared his enthusiasm about the future direction of epidemiology as a means of identifying risk factors associated with autism, in particular the increased focus on the role the environment plays. He highlighted his EARLI Study which is tracking the pregnancies of mothers who already have a child with autism from as close to conception as possible through the first three years of the newborn child’s life. And Dr. Spence discussed several autism-related clinical research projects that are taking place within the NIMH Intramural program including drug trials for immune disorders, sleep issues and epilepsy. Many of these trials are in response to parents’ concerns and will hopefully give future direction for the use and development of autism treatments.

The second half of the luncheon was devoted to questions from the almost 60 family members and individuals with autism spectrum disorders (ASD) who were in attendance. The dialogue was rich, honest and respectful. Some parents got a chance to express their concerns about the lack of treatment options and the need for a larger number of well-informed and trained clinicians in the community. On a final note, each panelist was asked what autism advancement (besides something they were working on) excited them the most. Two responded with the development of drugs for other neurodevelopmental disorders that could be relevant for autism with particular emphasis on older individuals; another was excited about the development of non-pharmacological treatments that have the potential to improve outcomes without drugs and the final panelist was encouraged by the developing consensus on potential risk factors associated with autism.

On a personal level, I was excited to witness the exchange of perspectives among these two important groups, families/ASD individuals and scientists. For us to find the answers we need to help those we love living with autism, it’s going to take strong collaboration between these two and this luncheon served this purpose nicely.

To read complete coverage from IMFAR, please visit http://www.autismspeaks.org/science/science_news/imfar_2010.php

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