Archive
In Their Own Words – I’m Moving Out
This is a guest blog post by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism.
You can download the Family Services Sibling Support Tool Kit here.
I am moving out. It is finally happening. Not like all of my other stints away. In this move, I will transition to the start of the rest of my life. Yikes. Don’t get me wrong, I have lived away before. But I always returned home, back to the nest.
I went away for college, but came home. I spent a period of time in Ireland, but came home. Oh yes and I lived down under in Australia, not once, but twice. Then I did the gypsy thing in New York City, bouncing from sublease to sublease. Again though, I came home.
Ever since Jeff moved into his group home, he has been on my oldest brother Tommy and me to move out as well. He moved, why haven’t we?
Believe me, the irony is not lost on us.
Growing up, the extent of our family’s travel was a 3-hour car ride out east. Professionals advised my parents against having my brother Jeff travel via airplane because of his sensory issues. So we just never did. It was fine. Our family vacations have always been wonderful, just different. It is the way it is.
My parents, bless them, have encouraged Tommy and I to go and see the world. They financed each and every trip and encouraged us to live each experience to the fullest. Believe me, I did, drinking in every moment, but something was always missing. Jeff.
Autism has always been a part of me. I don’t want to be dramatic, but I can literally trace every single decision back to autism in some way. I never thought anything of it. We come from a small town where everyone knows us and looks out for Jeff. During my times away, I wasn’t Jeff’s sister, I was just Alison. No amount of explaining Jeff can do him justice. He is so much more than just words, he is my heart. Majority of my post-high school friends have an unclear picture of my brother.
I have lived my life, often times to extremes. Nothing is ever really mundane and the pendulum swings. Returning home always brings me back to center, to a balance.
Osho (2006), a professor of philosophy and guru, takes the approach of Lao Tzu, “Balance is something that comes out of experiencing all the dimensions of life. Balance is something that happens […] Balance has tremendous beauty and grace.”Jeffrey navigates through life in a beautiful and graceful way. He is inspiring. Jeffrey shows me true beauty and he really is my grace.
But rather than get on my enlightened urbanite horse, I will quote Hoddington Carter that says more than any blog I can ever write. Carter says, “There are two lasting bequests we can give our children: one is roots, the other is wings.”
My parents have given me my wings. They have given me the tools to be successful, but more importantly the love and support to forge my own path. They have shown me how to treat people and how to live a full life through their stellar example. I hope they know that I carry them with me everywhere and just how grateful I am.
But it is Jeffrey that has given me roots. For I know every time I head home to visit, I will cater to his every need. He will continue to point out every imperfection on my face and I will continue to dance or sing to him on cue. No matter what I may deem important or value in a materialistic sense will all be left at the door.
Because if there is one thing I have learned about autism, is that it strips you down. Jeffrey doesn’t care about the fluff: what cool event I went to or fabulous article of clothing I just acquired. He just wants his sister. And his sister, I will always be.
Look out New York City!
Jeff posing with some custom artwork for my new place
Osho. (2006). The book of understanding. (p. 26). New York: Crown Publishing. Retrieved from http://ow.ly/7jbxm
Transcript of ‘Genetics of Autism: What It Means for You’ Webchat with Geri Dawson, PhD and Steve Scherer, PhD
On Thursday, October 27 our first “Office Hours” webchat was held with Autism Speaks Chief Science Officer Geri Dawson, PhD, and her guest host: University of Toronto’s Steve Scherer, PhD, a world pioneer in the discovery and understanding of the genes and genetic changes that predispose to autism. Drs. Dawson and Scherer welcomed questions about the emerging understanding of genetic predisposition to autism, related studies supported by Autism Speaks and how this research can lead to new therapies and insights of direct benefit to families and individuals affected by autism.
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Comment From Teresa
Hi :) Thanks for being here for us! My question: with so many children currently being diagnosed with autism – 1 in 110 – is it not equally important to research autism causes not only because of genetics but also caused by environmental issues?
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If environmental factors can lead to autism, why does only one of my twin boys have autism?
This week’s “Got Questions?” response comes from Alycia Halladay, PhD, Autism Speaks’ director of research for environmental science.
Today’s question came in response to my last blog post. In it, I explained that when scientists talk about the “environmental factors” that increase the risk of a disorder, they’re referring to pretty much any influence beyond genetics.
In the case of autism, the clearest evidence of environmental influence seems to surround very early events such as conception, pregnancy and birth. Those with the strongest link include parental age at time of conception (both mom and dad), maternal nutrition or illness during pregnancy, and certain birth complications.
The commenter’s question is a great one that scientists are actively exploring. The short answer is that inherited genes (DNA) and environmental factors seem to interact to influence whether an infant goes on to develop autism. So if the commenter’s twins are fraternal (meaning they share about half their DNA), the difference in their genetic makeup might explain why only one developed autism.
But what if the boys are identical twins–meaning they share exactly the same DNA? In this case, something beyond genes likely accounts for the different outcomes. Comparing the rates of autism among identical and fraternal twins provides clues.
In July, researchers used our Autism Genetic Resource Exchange (AGRE) to complete the largest autism twin study to date. They found a 70 percent overlap in autism among identical twins and a 35 percent overlap among fraternal twins. That overlap between fraternal twins is much higher than the estimated 19 percent overlap between different-age siblings.
These numbers tell us that it’s not always genes alone that determine whether a child develops autism. If it were, two identical twins would always share the same outcome, and the rate of a shared autism among fraternal twins would look more like that for different-age siblings. So we conclude that shared environmental influences are also at play.
Although twins share very similar pregnancy and birth environments, those environments aren’t exactly the same. For example, twins can have different positions in the womb or different placentas, and this can affect such environmental influences as blood and oxygen flow. Indeed, twins often have different birth weights, a known risk factor for autism.
It’s important to remember that “environmental” influences such as these don’t cause autism by themselves. Rather, if a child has a genetic predisposition for developing autism, these influences may further increase the risk.
Autism Speaks continues to fund and otherwise support research on both genetic and nongenetic risk factors for autism. EARLI is a network of researchers who follow mothers of children with autism beginning at the start of another pregnancy. IBIS is a study of early brain development in the younger siblings of children with autism. These studies depend on the participation and support of the autism community. Please visit our Participate in Research page to learn more.
Importantly, these studies provide insights into the underlying biology of different types of autism. This in turn becomes a basis for developing ways to treat and possibly prevent autism. As always, the goal of the research we support is to improve the lives of all on the autism spectrum.
And thanks for the question. Please keep them coming.
LIVE Chat with Dr. Ricki Robinson Transcript
On Monday September 26 Dr. Ricki Robinson, author of Autism Solutions: How To Create a Healthy And Meaningful Life For Your Child, hosted a LIVA Facebook Chat.
Having a child with ASD can and will have an impact on your immediate family and extended family. While it is easy to be distracted by your child’s often overwhelming needs, it is important to carve out time for your family and friends. Often they can be your best support. Additionally you may need help dealing with many concerns, including those that are emotionally charged, such as how to tell others about your child, whether to have more children, how to incorporate siblings into his program, and practical ones such as financing respite care and just organizing your life and family, as well as getting your own job at work done.
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In Their Own Words – Letter to Jaclyn
This short film is by Brad Dotson, a student at the University of the Arts in Philadelphia who also has Asperger’s Syndrome. Brad made a very personal film about his twin sister, Jaclyn, who has autism.
“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.
In Their Own Words – Today
This ‘In Their Own Words’ is by Cheairs Graves, who shares her life at Redefining Typical. It through writing and pictures that she shares her journey about Dawson, her son with autism. It is the marriage of the two that makes sharing her journey complete. You can find her on Facebook here.
She tries to play with him.
He walks away.
She tries to talk to him.
He does not answer.
She tries to calm him when he gets upset.
He pushes her away.
Then he looks at her.
He smiles.
He reaches for her hand.
She takes it.
She smiles.
And they walk.
And as I watch them.
I remember words.
Words that came from my father as he would send us off to school.
With a twinkle in his eye and a nod of his head my dad would say, ”Cheairs remember-Today is the first day of the rest of your life.”
So hand in hand my son and daughter walk off to school.
And with a twinkle in my eye and a nod of my head I whisper, ”Mae Mae and Dawson remember-Today is the first day of the rest of your life!”
I breathe.
Today-Yes- Today!
Copyright © cheairs graves August 25, 2011
“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.
In Their Own Words – Seeking a Connection
This is a guest blog post by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism.
As I read a diary of a mom’s ‘a pink sock sorry,’ I immediately fell back to my younger self trying to connect with my older brother Jeff. I understood what it was like expending endless amounts of energy just to have my brother see me. It seemed back then he just never did. Like my friend Katie, I just wanted to love my sibling.
For years, we worked to have Jeff let us in and for years he wasn’t ready. He used to watch the television with his face practically touching the screen. From the moment I could stand, I would try and wedge myself between him and his object of interest, always to be knocked over. My oldest brother Tom and I never stopped loving him – we actually became more fierce and protective.
My mother is a very talented photographer and so much of our life is captured on film. The photos over the years show us clinging to Jeff. He is either staring off into the distance or running away. I think they are beautiful. They are honest. That is how it was.
Eventually, he came around. Now he can’t get enough of us! But there are times when we go back to the old days, and I have to respect his need for space. He knows that I love him and I’ll be waiting when he is ready.
The photos look more like this now.
Jeff is twenty-six, which comes with a whole new set of challenges. We made it over the hump of him transitioning into a group home. It is more than a year later and we are still making adjustments. To be honest, I don’t know that we ever will fully adjust. Despite that, we will try and keep moving ahead giving Jeff the most productive and full life possible.
I know as time wears on Jeff will need me, but in truth, I will need him so much more.
“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.
Communicating Through Cupcakes
This is by Lena Rivkin, M.F.A., is an artist and graphologist living in Los Angeles.
Can you count the stars? Impossible! It’s just so comforting to look up and see that they are there, that you can count on them coming out every time. That pretty much describes the way I feel when I’m hanging out with Phillip at his house…when we’re baking cupcakes together. I look up at his face flushed with joy and watch as he adds the final touches – 
sprinkles, maybe – to the icing of his latest creation. In a fast-paced world, baking with Phillip is a quiet moment in time.
For those of you who read my previous article about him, you’ll remember that my older brother Phillip, who is severely autistic and nonverbal, loves to stitch needlepoint. I create the designs and Phillip is the craftsman. Our collaboration provides a special connection between our worlds – without words. He has been living for 29 years in a group home administered by New Horizons (a non-profit organization dedicated to helping adults with developmental disabilities) in North Hills, California, and attends a day program at Tierra del Sol in Sunland.
Since Phillip always exhibits a marked interest in repetitive behavior, for years we have engaged in needlepoint projects together at my house. And lately, we have been hanging out at the place where he lives to bake together. We particularly enjoy baking cupcakes. Historically, a recipe for a small cake first occurred in the U.S. in a cookbook appropriately titled American Cookery. It was written by Amelia Simms in 1796. However, the actual word cupcake (because it’s the size of a teacup) was first used in 1828 by Eliza Leslie inSeventy-five Receipts for Pastry, Cakes, and Sweetmeats. When Phillip and I bake cupcakes in 2011, we are entering into an innovative space where we can create an edible form of art.
First we line each section of the muffin pan with crinkly, colorful paper cups, a simple, repetitive process that Phillip
enjoys. Then we make a host of cupcakes, ranging from…oh, red velvet cupcakes with vanilla cream cheese frosting or pineapple-carrot, or dark chocolate with raspberry frosting. (Did you know that the height of the frosting should be about one-third the height of the cupcake? Sometimes, when we are feeling really daring, we make the frosting one half of the whole. It’s fun.) And we make strawberry and chocolate-almond, lemon-fudge, or orange-spice cupcakes too.
The ingredients for cupcakes are all pretty much the same: butter, sugar, egg, and flour just like a standard layer cake. Yet what we end up with is a creation. For my birthday, we felt really expansive and made a full-size chocolate cake. We design our cupcakes differently every week, even though we start with a very ordinary cake mix. Sometimes we dip dried or fresh fruit into chocolate. The visual effects are very important, just as they are when Phillip is keeping busy translating my designs into his meticulously crafted needlepoint. In fact, while the cupcakes are baking, he works on his needlepoint.
As with the needlepoint, there is a therapeutic process at work when we are baking. It involves eye and hand coordination as well as the joy of creation – and a sense of place. Although I still take Phillip to my house and other places (museums, parks, stores, and visits to friends), when we make cupcakes, we are enjoying being together in a consistent way in the place where he lives – his house. I feel that I am truly participating in his daily life with these home visits and learning about his activities, as well as the chores that are required of him. I particularly enjoy getting to know the outstanding staff – Samir Qureshi (the House Manager, who is also an excellent cook) and another member of the staff, Jamie Page, who are both an essential part of our weekly baking activity with their supportive and positive help with the baking. I am also becoming closer to Phillip’s friends. Everybody loves eating the cupcakes, so there is plenty of joy to pass around! Because the cupcakes bake quickly, while a tantalizing aroma fills the house, we don’t have to wait long to enjoy them.
Cupcakes have attracted wide interest today. In fact, cupcake-making has become a competitive “sport.” There are actually “cupcake wars” sponsored by food companies where people vie on television to win big prizes for the “best” cupcake recipe. But Phillip and I, his friends and the supportive staff don’t want to enter our cupcake recipes into showcase competition. We simply love the warmth of making them and sharing them in friendship together.
“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.
Camping, uh… sorta
Katie* is a ten-year old rising fifth grader who lives with her mom, dad, and eight year-old sister Brooke*, who has autism. Oh, and their awesome dog, Winston. When the spirit moves her, she writes at www.diaryofakatie.wordpress.com.
* Not their real names. (Except the dog.)
Last night Brooke and I went camping. Sort of. We kinda set up the camping gear in my room, cause Mama didn’t want us outside. It was fun anyway. I put up my tent and Brooke slept in my teepee. Yes, we did bring a couple of pillows, stuffed animals and two sleeping bags and a TON of books. I think I might have emptied out Brooke’s whole book shelf! For me, I just brought a few long chapter books.
She got kind of upset last night cause I was sniffling and it makes her ears hurt. She said she was scared. I’m not sure if she was really scared. She might have been, but I think it was more that she was hurt and maybe a little angry. I wouldn’t say scared, but I guess it’s possible.
She doesn’t really understand the names of emotions.They get mixed up in her head and then she doesn’t know what to say so she just says scared. Like when I asked her how she felt when she was crying, she screamed “HAPPY!” And of course I don’t think that was the right answer. We practice with her and it helps a little, but sometimes it’s really frustrating when she screams that she’s happy with tears streaming down her face.
She finally calmed down and we went into our tents. We took all of the books out of the teepee and put them next to it. I think I kinda went overboard with the books. She might have been buried in there! I also put in, in case she finished the books – which was doubtful – a soccer ball, a toy car that I built, and three Barbie dolls. I left about two books in the tent in case she wanted to read before going to sleep. I did the same. I turned on my flashlight and opened my book.
I could hear next to me “MmmmMmmmmMMMmmmmmMMMmm” … the little stimmy noises that she makes. Soon I heard her softly singing, “Row your boat” I just smiled. Sometimes her noises and songs are pretty annoying, but this time I liked it. It made me feel calm. I curled up and fell asleep.
Someday I hope I get to go camping outside, cause the inside version was fun, but I’ll bet the outside version would be even more fun!
“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.
Autism and Cops- When Two Worlds Meet
This ‘In Their Own Words’ is by Joshua Bongawil, a former intern at Autism Speaks. His 28 year old brother Andrew has autism. They live in American Canyon, Calif.
Andrew, their cousin, and Joshua
When Andrew takes Louie for a walk, he strolls as if both of them are in their own world. Andrew, in other words, is calm and focused, when he has command of our poodle. The solace found in a relationship with a pet is one of the traits sometimes associated with people with developmental special needs. This is a part of Andrew’s autism. I notice this, because I walk with them too.
One reason I describe Andrew’s style of walking the dog as “other worldly” is because his stride is unique. He often flails his arms mildly, turns his head around, or holds the dog’s leash over his shoulder like a heavy bag of footballs. He does not walk like this because something is wrong with him. These physical attributes are a part of who he is. The other reason Andrew’s world is unique has to do with an encounter with a stranger in a uniform on a spring afternoon.
Our neighborhood is at the foot of a hilly area which can be a very windy place, so residents must take caution when walking the streets. The caution also refers to the strong security placed in a new suburban development. I never thought Andrew’s movement or how he walked with Louie could be suspicious until a police officer asked if he could talk to Andrew.
I was taken aback, because Andrew is non-verbal. The ironic “conversation” went like this.
The police officer stepped out and asked, “Can I talk to you?”
I told him, “Are you talking to us?”
When he affirmed his interest in my brother and me, he asked, “Where do you live?”
I confirmed our street name, as he maintained his watchful eye over Andrew, who stood in his place, but kept turning his head around, as if to say in his mind, “What the heck is going on?” I decided to watch the officer’s next move.
He looked at my brother, raised his hands around his head but did not touch him and asked, “Is he…?”
“He has special needs,” I replied.
The officer smiled and walked away, but not without some extra courtesy.
I recalled that when Andrew is in his world with Louie, he moves as he sees his fit. Well, this polite cop entered that world. When Andrew meets new people, he doesn’t know how to say, “Hi!”, but he knows how to shake hands. That is exactly what he and the officer did before he went back to his car.
I admit my heart stopped when the cop car approached us from behind, but it started beating normally, when the officer drove off. My brother and I were literally frozen in moment of confusion, because unless this police offer knew what I meant by “special needs”, a completely different result may have taken place.
But it did not. I shook the officer’s hand and asked for his name. Officer Mark greeted us goodbye and left us alone.
Autism is a world. That is not just the name of a 2004 documentary, but perfectly describes this experience. In Officer Mark’s world, a young man wearing a baseball cap and casual workout gear, flailing his arms, shaking his head while pulling a dog leash raised some signals. In Andrew’s world, he was simply taking a walk. What happened, however, when their worlds came together, was not a clash, but an epiphany.
Andrew sensed he was not in trouble. Officer Mark knew Andrew was simply taking a walk. I knew that when there are more people like Mark who open their world to those like Andrew, a walk in the neighborhood is a bit easier for everybody.
“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.
