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‘Tis the Season, 2011

December 26, 2011 6 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.

It’s that time of year again.  Time to reflect on the past twelve months and count my blessings. 2011 was a strange ride, full of jarring twists and turns. I’ve lost a few marbles but added a dress size. My son, Josh, a low-functioning but charming fifteen-year-old, is still in the throes of puberty. (Geez, will it ever end?) Despite some cognitive regression, his social skills have improved greatly. He knows more restaurant managers than I do. Good thing, because I’m a lousy cook. So, I will give thanks for my son’s growing sociability, his love of school and family, and recognize a few more of the year’s blessings:

*I’m grateful that Josh likes the cafeteria as much as I do. We try to arrive around 4:00 to miss the dinner rush.

*I’m grateful that Josh’s limited vocabulary is becoming more age-appropriate.  Gus, one of his longtime aides, has taught him how to say, “I want to drink beer at Hooters.” It doesn’t matter that Josh doesn’t understand what he’s saying. Gus is still delighted.

*I’m grateful that only chemicals give me headaches instead of the pubescent odors that assault my nose every day.

*I’m grateful for Josh’s laugh.

*I’m grateful–thrilled actually—that my son and his twin sister, Jordan, are going to the same school for the first time in their lives. Schlepping them to and fro every day is a pleasure. Really.  I tear up sometimes when I watch them walk in together.  Jordan hugs her brother goodbye and shakes hands with his classmates before beating the bell to her own class.

*I’m grateful that I don’t pull my hair out over Josh’s seizures.  It falls out painlessly.

*I’m grateful that we haven’t given up on Josh’s speech.

*I’m grateful that Josh is obsessed with “sook.”  With school.  Every morning he shouts the word deliriously in the shower, and at the table, and from the rooftops. “SOOK!  SOOK!!”  It’s only a problem on weekends and holidays.

*I’m grateful that the thickening hair on Josh’s legs is finally covering his bug bites.

*I’m grateful that homecoming weekend was more sweet than bitter.  I allowed myself to cry only for a minute when nobody was around.  I always thought my twins would be double-dating in high school. But I was thrilled for my daughter, who looked radiant, thrilled about her very sweet boyfriend, and thrilled that my son didn’t care one bit about what he was supposedly missing.

“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 in the Family – More Common Than We Thought

August 16, 2011 43 comments

This is a guest blog post from Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventures of a Free-Range Aspergian.

This morning I read a striking a new study which addressed the question of autism in siblings – how common is it?  The findings will be of vital interest to many; most especially young families with an autistic infant.
Earlier studies and “conventional wisdom” suggested the incidence of autism in siblings was in the 3-10% range.  This new study shows those numbers to be very far from the mark.
Scientists in this new study found autism in 19 percent of the younger siblings.  High as that seems the incidence is even higher in families with two or more autistic kids.  In that case, a new sibling’s chances of being autistic rose to more than 32 percent.
Being a boy makes a difference too.  “Only” 9% of girl siblings were autistic, as compared to 26% of boys.  I found this difference quite interesting because I often wonder if autism is under-diagnosed in females.  In this study, all the kids were screened with the gold-standard ADOS or ADIR tests prior to age three.  So even with top-notch screening, we still have more autistic boys.
Those are some strikingly high percentages.  As high as they are, and knowing autism is a spectrum condition, I have to wonder how many non-diagnosed siblings will eventually turn out to have less severe but still noticeable “differences.”
There were a few more points I found interesting.  First of all, the IQ of the child did not predict anything.  Neither did severity of autism, as defined by the ADOS diagnostic scales.  So your odds of having a second autistic kid are higher, but those odds and knowledge of the first kid don’t combine to give any insight into how a second kid might end up.
The conclusion is inescapable:  autism does run in families.  According to these findings, the more autistic kids you have, the more you are likely to keep having.
We talk about autism having both genetic and environmental components.  This study, with 664 infants distributed all over the country, shows a very powerful genetic component.  That certainly does not diminish the role of environment, but it’s sobering.
I predict the results of this study will have a profound impact on family planning, because it casts parents’ chances of having a second or third child with autism in a strikingly different light that any previous study.
We already know (from other studies) that many parents stop having children when their first child receives an ASD diagnosis.  This new finding may significantly reinforce that tendency.
Read the study yourself at this link.
The study involved 664 infants from 12 U.S. and Canadian sites, evaluated as early as 6 months of age and followed until age 36 months.  Kids with previously identified autism-related genetic factors such as Fragile X were excluded from the study group.
“It’s important to recognize that these are estimates that are averaged across all of the families. So, for some families, the risk will be greater than 18.7 percent, and for other families it would be less than 18.7 percent,” said Sally Ozonoff, Ph.D., professor of psychiatry and behavioral sciences at the MIND Institute and the study’s lead author. “At the present time, unfortunately, we do not know how to estimate an individual family’s actual risk.”
This study was based on data from the Autism Speaks High Risk Baby Siblings Research Consortium (BSRC) and led by investigators from the UC Davis MIND Institute.
Your correspondent (John Elder Robison) is a member of the Science Board of Autism Speaks, one of the organizations who funded the work.

In Their Own Words – Life is Weird

October 15, 2010 27 comments

This “In Their Own Words” is by Mallory Johnston, who has an older brother with autism. She graduated from Tennessee Technological University in May 2010 with a degree in mechanical engineering and two minors, biology and chemistry. Mallory now works full-time with NASA-Marshall Space Flight Center in Huntsville, AL and has applied for medical school for the 2011 year.

I entered college with about 8 months of very limited driving experience.  I was 18 when I earned my license. My mother wouldn’t let me drive, and I didn’t push the subject. We had bigger things going on when I turned 15. Not long after moving to Bethpage, Tennessee, my brother got sick.  My brother was born about three months premature. Some people hear this and think “Oh, that is terrible. I’m sorry to hear that.” I’m not. My brother was born three months premature with hydrocephalus. Basically spinal fluid doesn’t drain properly, and excess spinal fluid from the brain isn’t removed.  Typically if a baby is born with hydrocephalus after a nine month gestation period, the baby is either a stillborn or in a vegetative state.  Severe mental disabilities begin to develop around six months of gestation.  Once again, Clay was three months premature. Who’s to say what is good and what is bad?

Twice a year we would make the three and a half hour drive to LeBonheur Children’s Hospital in Memphis, Tennessee. CT scans were performed on “Mr. Joseph Johnston, please follow me” a couple of times a year. Because a neurological condition wasn’t enough, he also has cerebral palsy on his right side, and when he was in the first grade, he had to have his Achilles tendon severed. He spent 3 years in casts and a leg brace.  I remember doctor after doctor asking “what type of special school does Clay attend?” “None. He goes to public school,” my mother would be quick to respond. My parents never once let Clay think he wasn’t capable of anything. No matter how much time he needed, no matter how much attention he needed, neither one ever doubted him of any ability. He didn’t have disabilities; he had “different abilities”.  And when he graduated from high school with an Honors diploma, my mother cried.   My brother cried when he was told he was going to have to have neurosurgery. With a strip of dark brown hair shaved off his head and a tube coming out of his skull, we all could have cried but couldn’t.

We all thought we were in the clear. We were told that there was a “good chance” Clay would need surgery after a major growth spurt, to replace his shunt and/or the tubing that drained the excess fluid to the abdominal cavity. When he was sixteen, he threw up on his desk in Mr. Vincent’s algebra class. What should have been a routine procedure turned into three years of Percocet and Lortab; waiting room chairs turned into single person couches. On my fifteenth birthday, my brother had brain surgery.  On his seventeenth birthday, he had brain surgery.  On Easter, near Christmas, in the middle of the summer—my brother had brain surgery. If he wasn’t in the hospital, most of the time he spent on the couch with a cold cloth on his head covering his eyes. I’d get off the bus, come through the door, and when I saw that all the lights were off, I knew what that meant: Clay had another headache.  The I-can-only-imagine-to-be-the-worst-headache-ever pain would build and build. Then he would vomit until he was dry heaving, sometimes for hours.  One There were so many surgeries and nothing seemed to work. What a quality of life- taking medicine that makes you sleep 20 hours of the day, and when you’re awake for the other four you’re either too drowsy or in too much pain to do anything.  A simple, routine procedure for a condition that affects one in every 500 live births lasted three years. We all discovered that some things were more important than splitting up Christmas ornaments or getting a learner’s permit. My mother never left the hospital when Clay was admitted. My father and step-father alternated who picked me up from school every day, followed by an hour drive to Nashville to visit at the hospital. My two dads—what can I say? After her husband, my father may be my mother’s best friend.  Clay hasn’t had to have surgery since late 2002, but we all hold our breath when he says his head hurts.

After graduating from high school in 2003, Clay had been taking some classes at the local community college. My brother couldn’t drive or tie his shoes or a number of things.  He, however, was very bright with dates and facts.  My mother was constantly at the school reminding teachers and administrators of the Americans with Disabilities Act.  Due to Clay’s cerebral palsy, his motor skills were hindered. This greatly affected his hand writing and his typing speed. Even after being told before school started about this, some teachers still found it to be their right to make public comments to the class about how they “couldn’t read Clay’s writing” and “can’t you just” write better.  My brother’s accommodations were time and a half on tests.  That’s all. He was legally blind without glasses, had hydrocephalus, cerebral palsy, and spent time in a leg brace.  All he wanted was time and a half on tests so he could type out the answers on a computer to make the teacher’s job easier.  About two weeks before finals week for the fall 2005 term, the college sent a letter saying his accommodations were being taken away. How convenient that it fell right before finals week.   During one of the many visits, the President of the school actually had the nerve to say to my mother “If Momma wants to go to college, why don’t Momma sign up for classes.”  She signed up for something.

At the beginning of the spring 2006 semester, my mother set up for Clay to have an extensive neuropsychological examination that would encompass two days and about 24 hours. She was going to have documentation that Clay needed accommodations, and she was going to get every single one she could for him.  Her plan was to get vengeance.  Clay was reluctant and unwilling. He eventually went inside. After about fifteen minutes the lady came out and said to my mother “I am very surprised at how well he has done considering how autistic your son is.” She said it positively.  “Wait. What? My son is what?”  I have known all my life that Clay was “different,” and more than likely Clay would need someone to live with him or at least very near him for his entire life.  But there was always hope he would “catch up”.  That single word, that diagnosis, caused abstract ideas to plummet and become real and concrete.  How could nationally recognized neurologist miss this? How could doctor after doctor never notice how he avoids eye contact, slaps his left hand into his right hand repeatedly, and just parrots what you want him to say when asked a question?  Why couldn’t his family that lived with him not recognize sooner that his destructive behavior wasn’t him “lacking discipline”? His actions were less his choices and more his reactions from the world as he perceived it.  How were we supposed to know that he didn’t see the world like the rest of us?

The diagnosis of Autism has helped all of us especially my mother.  For many years I believe she wondered “What am I doing wrong? Have I failed as a mother?”  Clay’s behavior would become more than disruptive to the point of violent over things such as a change of dinner plans. These “episodes” would almost always be followed with him bursting into tears. It is difficult to say if finding out sooner about his condition would have been better for all of us or not.  Because my parents refused to let Clay fall into the “special needs” category, he excelled further than average concerning academics.  My mother dived head first into books about autistic adults, books written by adults with Asperger’s, and books written by parents of autistic children. She read articles and watched videos.  Many of these she passed on to me.  We soon discovered that we couldn’t change his behavior, but we could only modify ours.  And on my brother’s 22nd birthday, my mother quit smoking.  “I have to live forever for him…”  We laughed because sometimes that’s all we really can do.

I remember being protective of my older brother when we were in elementary school.  If anyone picked on him, I took care of them. I have always been preparing to take care of my older brother. To be a starving artist who travels just snapping photos and writing journal entries hoping to be published sounds so incredibly desirable to me. To make mistakes, to be selfish, to run without a direction telling myself “I’ll figure it out later” are things I have tried my best to avoid.  I chose engineering because it is a stable field. It is a challenge, but it isn’t a risk. Everyone will have their responsibilities; some just embrace their responsibilities sooner than others.

When I was offered an engineering co-op position with NASA Marshall Space Flight Center in the spring of 2007, I never thought in a million years I would actually work for NASA. Who does that?! The co-op experience has been amazing.  I have seen two space shuttle main engine (SSME) tests.  I have watched one of the last night-time shuttle launches ever.  I have talked with astronauts over appetizers and drinks. I get to tell people “I work for NASA”.  Sitting on my book case is an autographed picture signed “Dream big” by STS-118 Pilot Charles O. Hobaugh.

When I tell people what I want to do, they say I’m crazy.  “Well, I’m hoping to go to medical school for Fall 2011, become an astronaut, write an award winning book, and then work on becoming President…” But I’d rather be the “crazy one” aiming for the moon than the person who has grown satisfied. I only partially understand the hard work and sacrifice a woman with her GED  performed to raise a gifted daughter and challenged son. I have witnessed my brother’s struggle with beginner’s algebra and putting on shoes with laces or pants that have a zipper. I am the age my aunt was when we believe she contracted HIV/AIDS from her husband.  I would rather be the “crazy one” to everyone else, so that I can be someone who didn’t waste her talents and the sacrifices of others.

Some could say I am pursuing medical school “a little late in the game” and that I am not approaching this in an orthodox manner.  I didn’t enter college as a pre-health major knowing “I want to be a doctor”. I didn’t start moving down a list someone said was the standard way of doing things to get into medical school. I am attempting to make my path because of a passion I have always felt.  My diploma says I graduated “cum laude” (with honors),  something I didn’t think was possible even a year ago.  I’m still not sure if I have expressed how much I want this. From the many things I have observed in my life and the many things I have accomplished, there is no doubt in my mind given the chance and the preparation that I can become an amazing medical student.

I chose engineering because it is a stable field. It isn’t a risk. Applying to medical school, that’s a risk. My life has been anything but standard. It has been a rollercoaster. It has been a movie. It has been drizzled with sweet moments and sprinkled with sour flashes.  Just as Clay continues to work towards his bachelor’s degree, I am working towards being more myself. Whether I continue to work for NASA or become a doctor or an astronaut or an award winning writer, my life will continue to be my life— peculiar and complete.

“Life is weird.”

Life is what you make it.  Dream big.

“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 – Matthew’s Talking Dream

September 1, 2010 19 comments

This “In Their Own Words” is by Debbie Simon Pacholder. She and her husband, Tom, have three children. Their six-year-old son, Matthew, has autism and is non-verbal.

I am home on a Saturday, in the kitchen, with all three kids buzzing about.  Allison and Shannon, our two-year-old twins, are teasing each other with their favorite bunnies.  Tom, my husband, watches them and laughs.  Matthew, our six-year-old, is at the refrigerator.  He touches the water dispenser with his finger, then suddenly turns to face me.  “Mom, can I please have a glass of water,” he asks, slowly and distinctly, carefully looking me in the eye.

Instinctively, I head toward the cabinet to get a cup.  Then, it hits me.  My son has spoken – and not just “no”or “yeahhh.”  My son has uttered a full sentence!  MY SON HAS UTTERED A FULL SENTENCE!

“YAY, Matthew!” I shout, flooded with happiness and relief.  He smiles sheepishly and accepts my hug. “Did you hear Matthew; DID YOU HEAR HIM?” I shriek.  “He just asked me for a glass of water!”  His voice is so full and beautiful. I think, this is what winning the lottery must feel like.

Tom is too surprised to form words, but the girls circle around Matthew and touch him, like he’s a rock star.  “Yay, Boy!” Allison sings.  “Matthew, talking!  Matthew, talking!” Shannon says, and flings her arms around him.  He smiles only slightly, but his deep blue eyes are alight with excitement.

Fast forward to the next day.  I’m at school, with all three kids.  I’m afraid.  Afraid Matthew will stop talking, that the day before was just an anomaly.  Yet, he’s speaking.  Words.  Phrases.  Sentences.  He’s had a breakthrough; he’s come out of it. I hold my breath.

“I strongly recommend you send all three kids here next year,” the director tells me, while they play nearby. She nods her head toward the twins.  “They’re doing incredibly well – and I see how much they have been able to help their brother.” She glances at Matthew, who’s playing with a toy truck, appropriately.

I’m about to answer, but something stops me.  A sound.  Click!  The safety gate to Matthew’s  room.  He’s up, and it’s 6:00 a.m.  Rudely, I’m jolted back to reality:  I’d been dreaming all along.

Not that I should have been surprised.  I’ve had this dream before, the Matthew’s Talking Dream. In the last one, we’re in a room with only a TV, and he tells me he wants to watch Frasier. Totally random. But this one is different; it mimics reality.

Matthew has put words together in real life three times. First, when he was two, at the Noah’s Ark pool – a water Disneyland for toddlers.  We’re at a birthday party. Matthew’s playing in the water, which churns like a hot tub, when it suddenly becomes still.  We whisk him out and head toward the pizza and birthday cake.  “Go back!” he shouts quickly.  We’re stunned.

Next,  Matthew’s four, and swimming.   His instructor, Gina, shows him how to dive in the water for the toy fish she leaves at the bottom of the pool.  She’s talking, and Matthew shifts his feet from one side to the other, impatiently.  “I got it!” he exclaims. Did I hear right?  I look at Gina for confirmation. “He said it,” she laughs.  Matthew looks in my direction, then focuses on the water, like it’s no big deal.

The next week, more instructions from Gina.  “I’ll do it!” Matthew says.  “I can’t believe it,” I shake my head.  “Clearly, he can talk.”  “Yep,” Gina smiles.  “He can.”

I look at Matthew.  “I’m on to you, buddy,” I tell him.  “Your secret is out.”  He pretends not to hear.

That was two years ago.  No phrases or sentences since.  Not even in the pool. I try not to be upset, but I just don’t get it. Hours and hours of swimming, ABA, OT, hippotherapy, oral motor therapy, reflex integration therapy, and still no more speech.  He’s way, way overdue, and I’ve told him as much.

Last week, we’re playing on his bed. He’s laughing and hugging me, like a typical six-year-old.  I remember what one of his therapists told us.  He knows how to do so, so many things.  He’s just choosing not to.

“Matthew, I know you can do it,” I whisper.  “You can talk to us.  I want you to talk to us. You know Allison and Shannon won’t let you stay quiet for much longer.  You’re going to have to make the decision to talk.  I hope it’s soon.”  He stares into my eyes, surprised. I stare back. He laughs – a deep giggle from his belly – then covers my mouth with both of his hands.  I move them away and hold them in mine. “Think about what I said,” I tell him.  “Goodnight … I love you.”

The next morning, he’s the first to wake up, and runs into our bedroom.  “Good morning sunshine,” I say, melodiously.  He looks at me and comes to my side of the bed.  “Mommm!”

It’s not a sentence, but it’s a start.

“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 – Imagination

August 27, 2010 21 comments

This “In Their Own Words” is by Robin Alvarado, who has two children; her younger son has autism.

My three-year-old son was diagnosed with autism in November, 2009. Since then, he has been enrolled in special education preschool, therapies, etc., He was also classified as high-functioning. I must say my son has really come a long way these past eight months.

Although my six-year-old daughter is still young, and knows that her little brother is different than she is, she still views him as just that – her little brother. She is so compassionate with him, as if she is a little mommy. She loves to take care of him and is such a big helper to me.

She will also force him to play with her and interact with her. Not in a mean way, but in a way where he really has no other choice but to pay attention to her. I’m not sure that she understands why it is so difficult, but she still pushes him. Sometimes it will be overwhelming for him and I have to tell her to give him a minute to calm down, or that he needs a break. But she is so persistent. I’m not certain that she even realizes what she’s doing but I believe it is really good for him.

Last week, I was sitting in the living room watching TV and both my son and daughter came in the living room, dressed up in play clothes I have for her. She then introduced them as a prince and princess. I noticed that my son face looked as if he was having fun. He was smiling ear-to-ear. They then went back to her room. A few minutes later, they both walked in pretending they were ninjas. Believe it or not, my son was punching kicking the air, and making sound effects to go with the punches and kicks. He was doing imaginary play. That was huge for me to see. He has never done anything of the sort. EVER!!

I really believe that my daughter forcing him out of his comfort zone is doing him a world of good. If she can get him to participate in imaginary play, what else will she be able to get him to do? Thank God for my daughter.

“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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“A Regular Guy: Growing Up With Autism” – A Sister’s Take

August 4, 2010 20 comments

Two Autism Speaks employees, Ali Dyer and Kerry Magro, recently read Laura Shumaker’s book, “A Regular Guy: Growing up with Autism.” Each wrote a response to the book, unique to his/her relationship with autism. Ali has an adult brother with autism; Kerry is an adult with autism. Below is Ali’s response to the book – stay tuned for Kerry’s blog post tomorrow.

Ali and her brother, Jeff

When I was approached to read “A Regular Guy: Growing Up With Autism” and write a blog post from a sibling’s perspective, I was game. Shumaker shares her “family’s story of love and acceptance” in raising her son Matthew. I thought about the last book I read based on this subject. It was a children’s book and I was probably seven. My family always joked that we should write a book about our journey, and pick from the arsenal of stories from over the years. Oh well, I figured; let’s get reading.

I couldn’t put the book down. I got it. I found myself scribbling in the margins, highlighting and starring paragraphs and phrases, while I flipped through the tear-stained pages. My big brother Jeff is 25 years old and has been the focal point of my family’s life. He is inspiring to me and I adore him. Laura Shumaker’s honest portrayal of her life with autism resonates so much with my own.

She breaks up her story into three sections: “Beginnings,” “Navigating Childhood” and the “Road to the Future.” When Shumaker recalls her bout in finding some sort of diagnosis, I see my parents. After jumping from specialist to specialist, all weighing in with different viewpoints and recommendations, a young doctor wearing acid-wash jeans confidently diagnosed autism; as if it was a no-brainer. Having no idea, in 1987, what autism was, and nervous about the unknown life that lay ahead, my parents marched on. They vowed to do everything in their power to give our family the best life possible. As a courtesy to them, I don’t wear acid-wash.

I respect Laura Shumaker for sharing both good and bad experiences of her other two sons. I too, have experienced painful comments and taunts about my brother, even to this day. Just recently, in an upscale Hamptons restaurant I fielded remarks from two grown women in the ladies room. It hurts as much today as it did during recess in middle school. I can share with her two sons the conflicted emotions of having a brother with autism. Always, though my love, respect, and admiration win out for Jeff. I have another “normal” brother, and we have an understanding of one another and I will be forever thankful to have someone to share this with.

Shumaker also tells some embarrassing experiences that you just can’t help but laugh about. Matthew was honest – painfully honest. She tells a story, which was featured on the Autism Speaks Blog, about bringing in a babysitter who also happened to be overweight. Matthew couldn’t drop it, and so that story goes. My brother Jeff is always good for pointing out if you need to dye you hair to cover your roots, as well as unsightly scars, and wrinkles. He has expressed his desire for me to get Botox at the ripe age of 23. How rude.

Daily activities, for a family with autism, can be a great and strenuous adventure. While recalling a trip to church for a Family Worship Sunday, they had a share of surprises; I can’t help but laugh and remember. Our family never dared bringing Jeff to church unless we were prepared with the essentials – a pad and paper or his trusty Magnadoodle. Our lovely church always had a candlelight vigil the night of Christmas Eve. We always strategically planned to sit in a pew near the firefighters in case we had an “issue.” On one particular Christmas Eve, we had run out of paper (rookie mistake) and Jeff began to connect the dots on the polka-dot dress of a woman in front of us. She took it well. ‘Tis the season to be jolly, I guess!

Recently, our family moved Jeffery into a group home. My parents had prepared for awhile, but we just kept procrastinating. It seemed that the move-in date really snuck up on us. The agency Jeff has been with his entire life set up the most beautiful home. They really didn’t miss a trick and we will be eternally grateful. It is literally five minutes from our house, but we felt that it may as well be in Egypt.

Almost 20 years ago, we found three other families in our same boat. We call ourselves “The Lucky Ones,” and it is really true. How lucky we are, to have found an instant support group, that we can weather the storm together. Through the years, we have laughed and cried, and met many angels along the way that made life a little brighter, in times of darkness. I don’t know how we would have made it through without each other. On moving day, the men who have autism, who we will forever refer to as “the boys,” followed each other around like little ducklings. As hard as it was, leaving their home, we knew it was the best thing for everyone. Jeff has been there for about a month and is thriving.

When speaking of her two other sons, she says they, “came together in laughter and in sorrow, and they were left feeling the weight of their family’s bittersweet burden.” My brother Tom and I recently took Jeff out to dinner while my parents were away, and I couldn’t help but get emotional. I was thinking about our future together. How could I ever really move far away? Will we be able to hold everything together, as my parents have all these years? Shumaker put my own emotions so eloquently. The future will always be unsure, but I don’t for a second think Jeff is a burden. He is the purest and greatest blessing in my life. My brother made me who I am.

“A Regular Guy: Growing Up With Autism” sent me in a time machine, one that I would travel through again and again. I would like to thank Laura Shumaker for her honesty and for sharing her family with the world.

To check out Kerry Magro’s post on “A Regular Guy : Growing Up With Autism” read here.

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In Their Own Words – What Not to Wear, Autism Style

July 20, 2010 45 comments

This “In Their Own Words” essay is by Laura Shumaker. Laura is the author of “A REGULAR GUY: GROWING UP WITH AUTISM.” Join the discussion about her book on Facebook.

It was 103 degrees, the hottest July 3 on record for our community in Northern California. My son Matthew, who is 24 years old and has autism, was getting ready to go the local saloon with his younger brother Andy to sing karaoke, one of his favorite activities.

“I’m ready,” he said, and as I turned to say goodbye, Matthew stood before me in a long sleeve winter wool plaid shirt, khaki pants and dress shoes.

To top off the look, he had cut his bangs too short and tried to hide the botch job with a comb over. He had patches of toilet paper soaked in blood all over his face from shaving.

He was beaming.

“Matthew,” I said, “you really should change into something cooler. It’s really hot … ”

“I look good!” he argued.  “”I’ve been planning on wearing these clothes all week!”

He did look pretty good, at least better than his standard shorts, t-shirt, dark socks and sandals.

Andy shrugged with resignation in the back ground, but insisted that Matthew clean up the shaving cuts before they left.

I asked parents on my  Facebook page to tell me which battles they’ve given up fighting. Most, as you can imagine, had a hard time picking just one.

I have struggled for years over Matthew’s clothing choices and grooming routine. Thankfully, he’s embraced the idea of the importance of physical hygiene (though a little obsessed with a close shave) but the clothing battle is one I’d given up on. As Matthew walked out the door that night, it occurred to me that it was time to help him work on his image. He was, after all, looking to meet some nice girls. He was going to need all the help he could get. The challenge would be finding a way to get the message across without lecturing him.

An idea came to me.

I got the Halloween box out of the attic and fished out some cheap wigs that we’d collected over the years. I convinced Andy to help me put together some “regular” outfits and some oddball outfits enhanced by a Sony Bono mullet and the Morticia wig.

“We’ll make it a game!” I told Andy, “We’ll ask him to pick the outfit that looks the craziest and the one that looks the most regular. “

“You realize this is going to backfire,” said Andy, “and that he’ll want to start wearing the wigs around.”

And of course that is exactly what happened.

So I’m backing off again. You have to hand it to me for trying. The good news is that Matthew and his social skills counselor are going people watching today at the mall. (Her idea, not mine)

Maybe he’ll get some fashion tips there.

“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 – A Sister’s Love

July 12, 2010 10 comments

This “In Their Own Words” essay is written by Miranda Specht,  from East Islip, N.Y. This was originally written as a college admissions essay.

When I was three years old my baby brother was born. I remember the car ride to the hospital on the day we were finally able take him home. I was so excited. I had no idea then, how much of an influence he would be.

Richie was born weighing only one pound, thirteen ounces and spent the  first 95 days of his life in the intensive care unit struggling  to survive. On a daily basis there were teachers and therapists that would come work with my brother. At this time our family thought this would be the biggest obstacle he would have to overcome in his life.

Eighteen months later my brother Richie was diagnosed with autism. He would cry all the time and didn’t like being around other people. As he grew, his inability to communicate would cause him great frustration. When people don’t understand him, Richie hits his head. Although his disability has been a tremendous challenge for my family, it has also turned out to be a great blessing. I have learned a lot from Richie about tolerance, patience, and compassion.

Having an autistic brother has changed my perspective on life and shaped the way I relate to and communicate with others.  When I was younger it used to make me angry when people would stare at my brother in public. As I got older I realized that people were afraid of what they didn’t understand. Now I try to educate people about autism every chance I get.

It is hard work  living with a disabled child, and at times it can be very stressful, but for me it has also been an extremely rewarding experience. I learned at a very early age how to put someone else’s needs in front of my own. At times it frustrated me to make these sacrifices because it didn’t seem fair. When I  played sports I sometimes resented the fact that all the other kids’ parents were at the games. My parents would watch from the car, because my brother couldn’t handle the noise and being around so many people. But as I grew up I realized Richie was the one who had been cheated. I began to feel less sorry for myself and more grateful for him. If it wasn’t for him my heart wouldn’t be as big as it is. He has made me a more open minded and tolerant person.

I have come to realize that everyone is different, and that you cannot judge someone simply because they are not the same as you; you should give them a chance, because you never know what might have happened in their lives or how they might end up affecting yours. Richie has helped make me a more loving, compassionate, and generally a happier person.  Living with my brother has also made me understand what life is really about. We take for granted having a voice and being able to interact with each other. It’s hard to understand how important these things are until you’re forced to view life without them.

When you live with someone who is disabled you have a greater respect for the things you and others are capable  of doing. My brother is unable to do daily tasks on his own. So many wonderful teachers and aides have helped my brother get to where he is today. Seeing these people work with my brother has  inspired me to consider a career in elementary education and/or special education. Not every step in this journey has been easy, but I know my brother has made me a better person. So, now  when it’s five  thirty in the morning and I could really use more sleep and  Richie is running up and down the hall in front of my room  saying “Bye, Bye, Bye” and laughing, I can smile because I know  today is going to be a good day.

“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 – The Voice Unheard

June 4, 2010 40 comments

The Voice Unheard

I scream
I cry
I bang
You still don’t understand
The words won’t form for me to speak
But alas I have much to say
If only there was a way
A way for you to hear me
From behind the prison bars

The children on the streets stare
Like illuminating eyes in the night
I appear not to care
As they ponder over the sight
Of me walking on my toes
And screaming without no cause
To them I’m an alien
If only they could understand

There’s more than meets the eye with me
I’m not just some freak
If they could only see
I can’t help what I am or how I act
There’s much more under the surface
A truth waiting to be found
I’m not going to die
But that doesn’t make things alright

My mind, my body
Don’t work like they should
I’m trapped
A prisoner
No one’s knows how it happens
Why I can’t talk to you
It’s something in my brain
That went askew

There are others like me that can talk
But their case is different than mine
See we are all very different
Even with the same infected mind

In my case, I’m severe
I can’t talk
Only scream and yell
I bang walls and slam doors
And windows in cars
My senses aren’t like yours
My sense of feeling is off
I bang my head down on a table
Just to be sure it’s still there

Autism isn’t like cancer
There’s no cure
Or solution found
Only drugs and medication
To try and calm us down
But I am lucky to have a family
That loves me so much
They make sure I’m taken care of
And do everything they must

So next time you see me on the street
Or others of the same fate
Think of all we go through
Just to get through each day
Autism has a voice
If you take time to listen
You will hear

This “In Their Own Words” essay is by 15-year-old Emily Church. Emily’s 12-year-old brother has autism and she wrote this poem for a high school English class. “The Voice Unheard” is written from the point of view of her brother explaining his actions.

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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