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Communication Breakdown: Hacking Autism Provides a Dose of Technology – Part III

October 24, 2011 23 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

Read Part I and Part II

“Communication Breakdown: Hacking Autism Provides a Dose of Technology” is a highly personal representation of an exciting event, and a rare and detailed glimpse into an autistic mind.  Holman’s account is unprecedented in autism journalism.  More than a simple, factual record, it is an artistic statement – one autistic interior on display.  The situations and dialogue within this story are colored by the author’s heightened self-awareness – reality becomes a mirror to reflect the isolated inner world of autism.  This world is rarely communicated to an audience.  Holman offers autistic journalism, seen through the narrow lens of a pop-culture soaked imagination.  This is journalism in technicolor.

Alex was growing frustrated.  “The lighting in here is awful!  I can’t work with this!  And why are all these people so noisy?  Can’t they see we’re filming?!”

It isn’t easy to be an obsessive autistic.  Our lives are often governed by a single, narrow pursuit, and anyone with a separate agenda is simply in our way.

“What are they doing that is so important?!” Alex fumed.  “We’re making a movie!  Who invited all these people?”

“Um, those are the developers,” I said.  “I think they are kind of important.”

Andy Shih sat before us, quietly observing our executive dysfunction.

“I have an idea!” I declared, climbing onto a nearby table.  I kicked aside a stack of brochures, and lifted an imaginary bullhorn to my lips.  “QUIET ON THE SET!” I bellowed.  My library voice can be heard by anyone within a mile radius.  You can imagine the thunderous volume of my announcement.

The room fell silent.  I hopped down from the table, quite pleased with myself.  “I’ve always wanted to say that!”

I took a seat before the camera, excited to begin the interview.

“Get a little closer to Andy,” Alex said, squinting into the viewfinder. I slid closer, bouncing and fidgeting.

“Closer…” Alex said.

“Closer?!  You want me to sit in his lap?”

“Please don’t…” Shih stammered.

I had never conducted an onscreen interview.  I felt like the dude from Inside the Actor’s Studio!  I waited for Alex’s cue.

“Alright, make it happen guys!  One… two… three… action!”

My first interview went rather well – I barely interrupted at all.  The footage will be available when Alex wraps up post-production.  Alright, Plank, stop reading this article – you’ve got a movie to edit!

I thanked Shih and wandered off to abduct someone important for our next interview.  Luckily, I was distracted by a group discussion in the dining area.  Marc Sirkin, Peter Bell, and Steve Silberman were gathered together in heated debate.

“Do I hear opinions?” I said, plopping into a nearby seat.  “I’m sure you’re all wrong.”

“Nice to see you again,” Steve said.  “We’ve been discussing autistic self-advocacy.”

“Uh oh,” I groaned.  “The last thing we need is a pitchfork wielding mob parading through Alex’s shots.”

Marc laughed.  “It is a controversial subject.”

“Has anyone seen my soapbox?” I said, looking about.

“Huh?”

“Oh, I’m already standing on it… Black and white thinking is a recognized symptom, and one which casts a troubling shadow over autism politics. We’re not characters in some autistic version of Star Wars.  This isn’t about heroes and villains… though I wouldn’t mind seeing Peter here cross light sabers with Ari Ne’eman.”

“Do I get to be in the movie?” Marc asked.

“You’re a storm trooper… but your scene was cut.”

“Autism Speaks has made mistakes.  We’re all learning.  Autism was poorly understood when I was a kid.  I lived 24 years without a diagnosis.  Awareness is spreading.  It is only natural to see more people being diagnosed.  We finally know what to look for.”

“Aren’t you offended by the notion of a cure?” Steve asked.

“I don’t know what that means, and I’ll give five bucks to anyone who can offer a simple explanation.”

No one made a sound.

“Anyone?  Mark?   Bueller…?  Bueller…?”

I’d have to remember this little challenge the next time Alex needed a quiet set.

“Good, I’m broke anyway. Autistic pride is great, but we need to remember those who can’t advocate for themselves, or communicate at all.  The promise of a cure brings hope to many devastated families.”

“False hope?” Steve asked.

“Maybe, but people need hope.  More importantly, they are willing to pay for it.  We may never find a cure, but there is no telling what will be discovered along the way.  Knowledge is a powerful asset.  I’m not opposed to genetic research, but I’d like to see a greater emphasis on services and support – that’s why I’m sitting here with you fine people!”

The conversation continued for some time, everyone offering valuable insights.  I realized, quite suddenly, that precedents were being broken all around me.  For far too long, the autistic community has been relegated to either side of a massive, ideological divide.  In that moment, we were unknowingly constructing a bridge.  This was truly an unlikely meeting of minds, and a rare dialogue.

Progress depends on the cooperation of many.  Communication is the first step. 

I thought of Kat.  “Has anyone seen my girlfriend?”

I found Kat doing homework in a corner of the lobby.  Her frustration was evident.

“You want to come get some more pictures?” I asked.

“I got some already,” she said, without looking up.

“Well, we could  always use more.”  I was trying my best to include her.

“I’m studying.”

“Kat, what’s wrong?”

She sighed and closed her book.  “You know,” she said, “you’re a lot like Alex.  I guess I never truly realized…”

“Realized what?”

“Never mind,” she said, reopening her book.

I stood awkwardly for a long, silent moment.  “Oh, there’s Phil,” I said.  “We have to interview Phil!”

It seemed the day would never end, and I didn’t want it to.  I sat down for many more interviews and conversations, all of them fun, fascinating, and fleeting…

I was living my dream, and feverishly taking notes, a longstanding outsider recording his moment on the inside, trying desperately to capture a dream and keep it forever.  I knew I would wake up soon enough.  Like Cinderella, I was afraid to enjoy an expiring spell.  The stroke of midnight would not reveal my elegant coach to be a pumpkin, but I knew my press pass would look an awful lot like a nametag when the day was over.

I wanted to share my happiness with Kat – it was too abundant for me to keep to myself – but she was nowhere to be found.

I ran into Marc, who told me the development teams had completed their applications.  “Have you seen Kat?” I asked.

“Didn’t she tell you?  She walked back to the hotel.”

I followed the crowd into the conference room and slumped into a chair.  The developers presented their applications, brilliant technological tools which would enable communication for countless autistics.  I tried to pay attention, but I was confused and exhausted, lost in my own communication breakdown.  One developer presented a bonus application, which he had created on his own while the rest of his team worked together.  That was me, always doing my own thing, lost in my own obsessions, while the rest of the world worked together.

I sat on the edge of Alex’s bed.  “You feeling alright?” he asked.

“People come and go,” I said.  “At first they like me.  They want to help me.  After awhile they realize that I’m not going to change.  They get angry… then they leave.”

“I’m glad you’re my friend,” he said.

“Thanks, Alex.  I’m glad you’re my friend too.”

What else could be said?  It had been a long day.

The San Francisco airport was nightmarishly crowded.  The line through security seemed to stretch on forever.  “Kat, I really don’t like lines.  I’m going to tell them that I’m autistic so we can go through the short line.”

“You’re going to play the autism card just because you’re impatient?” Kat scoffed.  “No one here likes lines any more than you do.”

Ashamed, I followed Kat to the end of a massive, slow moving crowd.  “This isn’t so bad,” I said, attempting to be cheerful.  But it was bad; the line never seemed to move and the swaying herd of travelers was closing in on me.  I began shaking my legs and flapping my hands.

“Stop it!” Kat hissed.  “You’re embarrassing me.”

“Sorry… I just… I really don’t like lines.”  I could feel the sweat on my forehead.  I couldn’t breathe.

I was on the verge of a meltdown by the time we reached security.  Kat went first, making it effortlessly to the other side.  I was alone.

“Sir!” a large, threatening security guard shouted at me.  “Your bag won’t fit.”

“What are you talking about?!  They said I could carry it on!”

“You can carry it on, but it won’t fit through the x-ray tunnel that way.  You have to turn it around.”

“Huh?” I was baffled.  I couldn’t make out the guard’s words.  I stood there stupidly, my heart beating out of my chest.

The guard grunted, and stormed past me.  He lifted my bag, rotated it, and set it back on the conveyor belt.

“I’ll need you to remove your hat,” he said, sternly.

“My hat?!”  I really hate taking my hat off.  Hats are a sensory comfort, and I feel vulnerable and anxious without one.

“Sir,” he thundered, “I need you to remove your hat!”

“I HEARD YOU!” I screamed.  The entire airport fell silent.  I’m surprised I wasn’t arrested on suspicion of terrorism.

I didn’t speak to Kat until we had boarded the plane.  We found our seats, and I regained my composure.  Finally, I turned to her.  “Kat?”

“Yeah.”

“A relationship, I think, is like a shark. You know?  It has to constantly move forward or it dies.  And I think what we got on our hands is a dead shark.”

“That is a quote from the movie Annie Hall,” Kat said.  The disdain in her voice made me shudder.

“It is…?”

“You know it is.  It’s from the scene where Alvy and Annie break up on the flight back from California.  Are you using stolen Woody Allen material to break up with me?”

“No, I’m not trying to break up with you.  I just don’t know what to say.  I’ve never fought with a girl on a flight back from California.”

“Life isn’t a movie!”

The plane’s air conditioner was on the fritz.  The heat was oppressive.  Passengers were fanning themselves with barf bags.  “This must be what the Amazon feels like,” I muttered.  I caught sight of a stern looking stewardess several rows ahead of me.  “I WANT MY MONEY BACK!” I shouted towards her.

Giggles erupted throughout the plane.  “You’re not nearly as funny as you think you are,” Kat scowled.  “Stop embarrassing me.”

Now I was mad.  I cleared my throat, and began singing at the top of my lungs, “I’m dreaming of white Christmas…”

The passengers howled with laughter.  “I hope you’re happy,” Kat said.

“One of us has to be, at least once in awhile.”

“You said you were afraid of living in a world that didn’t include me, but you never did!  You’re too wrapped up in your own world!”

“That isn’t fair.  I warned you about this.  I tried to make you understand.”

“Oh, so now it’s my fault?  I didn’t research autism enough?  I wear a puzzle piece around my neck every day!”

Kat was crying now.  I knew that I should comfort her, but I was too angry.

“No, you did plenty of research,” I said, sarcastically.  “You put on a necklace and now you understand me!”

Kat’s face went blank.  I couldn’t read the emotion in her eyes.  Was she sad?  Angry?  Scared?  Her hands trembled as she ripped off the necklace and threw it to the floor.  I watched a tiny silver puzzle piece dance down the aisle… as everything faded out around me.

My parents drove me to the emergency room.  Kat had left me at the airport.  My typically inaccessible emotions had built up over the trip.  They came erupting to the surface, all at once, in a meltdown to end all meltdowns.

I paced frantically, up and down the ER lobby, flapping my hands, gnashing my teeth, and breathing heavily.  I was finally sedated.

I spent the next five hours crying in a hospital bed.  My mother sat beside me, stroking my head.  “Don’t leave me here,” I begged.  “Don’t let them put me in a mental hospital again.  Don’t leave me…”

“I’m not going to leave you,” she said.  “I’m never going to leave you.”

“But Kat left me.”

“I’m sure she had her reasons,” my mother assured me.  “Relationships are tough.  She is young and confused.  She didn’t mean to hurt you.”

I thought of the closing line in Annie Hall, “After that it got pretty late, and we both had to go, but it was great seeing Annie again. I… I realized what a terrific person she was, and… and how much fun it was just knowing her; and I… I, I thought of that old joke, y’know, the, this… this guy goes to a psychiatrist and says, ‘Doc, uh, my brother’s crazy; he thinks he’s a chicken.’ And, uh, the doctor says, ‘Well, why don’t you turn him in?’ The guy says, ‘I would, but I need the eggs.’ Well, I guess that’s pretty much now how I feel about relationships; y’know, they’re totally irrational, and crazy, and absurd, and… but, uh, I guess we keep goin’ through it because, uh, most of us… need the eggs.”

Kat was right, life isn’t a movie.  It doesn’t always follow the script you’ve written in your head.

Life is difficult… but love is worth it.  I know that I am loved, and that I love in return.  I may have difficulty communicating my feelings, but I feel deeply nevertheless.  I have learned that no matter how irrational our emotions may be, they are always valid.  We must understand if we are to love, and we must communicate if we are to understand.

In an article called Where Have I Been All My Life, written shortly after I met Kat and received my diagnosis, I expressed the beauty and pain of living on the autism spectrum.  ‎”To have Asperger Syndrome is to feel as if you roam the world in an antique diving suit, cut off from everyone. Though something of what others say can be interpreted, their words are muffled by a devastatingly beautiful, frightening and complex symphony. This has been the source of both my lifelong joy and solitary despair, for as much as I would like to share this music, it seems no one else can hear it.”

I love who I am, and I will keep following the music.  I may be marching to the beat of my own tone deaf drummer, but the music makes me happy.  Perhaps, one day, I will find the words to share this music with someone else.

“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.

Love and Autism: My Progression in Relationships

August 25, 2010 9 comments

This guest post is by Autism Speaks staffer Kerry Magro.  Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started an Autism Speaks U Chapter: Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events, while supporting their local autism communities.

Ohhh relationships. At the age of 22, I’ve had several relationships throughout my life. I’ve also had several breakups. When I talk to families with children on the spectrum this is usually one of the big subjects, but also one of the most sensitive. How does a child on the spectrum even go about having a relationship while many neurotypicals today, cannot? It’s a difficult road with no clear answer.

Looking back at my experiences, some of my main problems in relationships have been due to “social awkwardness.” This social awkwardness could be attributed to many factors, but for me it was always based on “small talk” and “mind blindness.” With small talk, many times (especially when I was younger) I couldn’t hold a conversation, making any type of interaction awkward in the sense of the silence and long pauses involved. The only way I would be able to keep a conversation going was to change the subject randomly to something that was of interest to me (such as basketball).  This was hard because while I did have friends who play and like basketball, for instance, it’s not something you want to hear about 24/7. How do you make strides without having the capabilities of conversation?

Confidence, as well, became an underlying issue because of these tendencies. These moments, where I wouldn’t have anything to say made people think I was a shy person who wanted to be left by myself (which was never the case). Could you imagine a scenario where you wanted to be talked to, in many cases even loved, and you just didn’t know how to acknowledge it?

Mind blindness, which is typically known as the inability to develop an awareness of what another person is thinking, made for some difficult scenarios for me. The inability to do this, to “put myself in the shoes of another,” limited my understanding of others, and made it difficult to develop anything but basic friendships/relationships. People  in today’s society are are very complex and reading them, not only by a relationship standpoint but to advance in life, whether its through school, employment, etc. is a necessary skill.

At nine, my doctor recommended against mainstreaming me in a public school because she said I would have never understand social cues and worried about me getting beat up.  Granted, I survived those days, a testament to having developed coping mechanisms, splinter skills and/or growing up. The one thing I wish though, looking back, was that I found someone who understood what it was like. Whether it was an intimate relationship or just a friendship, someone who, on the spectrum knows exactly what I’m going through. It’s not the same case as others, where maybe you relate with someone because you both came out of the same background, for example. Being on the spectrum, no one case is the same. Every case is different which means that you would always find something close but not exactly to what you are looking for. Especially on the college level, many students on the spectrum don’t go to college. This is where some of the difficulties lie for those on the spectrum who are having trouble with relationships in college. How do you approach it when you are the minority filled by a majority that may or may not be accepting of who you are?

I leave these questions up for debate but my standpoint on relationships is pretty simple. Whether you are on the spectrum or not, all relationships are hard work. Whether it is within the relationship or not, the best thing you can do for yourself is be who you are and to negate all the negative energy that may come your way. Yes, there is definitely a need to branch out and find what interests you have which can expand the pool of who you may be interested in. Ultimately, we all know the expression; there are many fish in the sea (but not quite as many if you are not looking). This is where relationships begin.

(This is one of my Autism Speaks U related blog posts. If you would like to contact me directly about questions/comments related to to this post I can be reached at kerry.magro@autismspeaks.org. Thanks everyone!)

In Their Own Words – The Club that Saved My Son

August 23, 2010 7 comments

This “In Their Own Words” is by Ileana Morales, who has a teenage son with autism.

I have a 17-year-old boy named David who has autism. David, up until the age of 10, knew very few words such as mama, papa, and toy (I know, all kids’ favorite word). At the age of 11 he became high-functioning; he would not stop talking and we couldn’t be happier. He was no longer shy; he could actually look you straight in the eye and tell you what he wanted, which he never did before. He started doing great in school and at home, but when he turned 16 (and the hormones kicked in) everything changed dramatically and not for the better.

He was desperate for friends, he wanted a girlfriend and when he gets something in his head of what he wants, he will not drop the subject. He was growing more and more frustrated. He started trying harder to make friends at school, but little by little he came to realize that he was different. He was treated differently and that the girls just wouldn’t give him the same attention that they would to another teenager.

He started getting more aggressive every day; David went from my sweet little boy to an aggressive teenager. Things were getting out of hand; I didn’t know what to do or say because anything would cause an outburst. I didn’t know who to turn to, either. The treatments weren’t helping and I didn’t want to result to treatment with drugs. He even started hurting himself with any object he could find, biting himself really hard or smacking his head repeatedly, causing him a terrible migraine. He would kick and punch doors, and throw things all over the house. He would cry to me saying, “Mom, please help me. I have no friends. I’ll never have a girlfriend; I’m a disgrace.” That would just rip me apart inside – he was frustrated and so was I.

I enrolled him in the Best Buddies program at school, but after every outing, he would come home more depressed and tell me that the regular kids didn’t want to talk to him (which honestly defeats the whole purpose of the program). One day, I started talking to the mother of one of David’s classmates, Rosa, and we decided to start a club.

It all began when Rosa threw a Sweet Sixteen party for her daughter, and all the kids were so happy all week – planning on what to wear, how to dance which the teachers at school showed them how to do. David didn’t have one outburst all week, which was a miracle for us, and they ended up having a blast at the party. The following Friday, I picked up seven of David’s high-functioning friends in my van with the other mother, Rosa, and we went to “hang out” at the movies “like the regular kids”(in the words of my son). This was the first time they had ever gone to the movies with friends and they would not stop laughing and talking, just being the teenagers that they so desperately craved to be. Rosa and I came out of the theater bawling our eyes out; we just felt so relieved to be able to do that for them.

Now we go out every Friday. I have the kids calling me all week to see where we’re going and what time I’ll be there to pick them up. David and his friends are no longer the aggressive teenagers they once were, because they’re too busy planning their Friday night outings and it makes me proud to be a part of that.

There needs to be more programs like this out there. Yes, there’s physical and speech therapy for them when they’re adolescents, but what about their social skills, their happiness? Our teens with autism need help; they get lonely, they want attention and they want friends. It’s our human nature to want to be accepted in society. If they suffer, so do we.

I wanted to share this story with every mother going through what I went through. Our little club is working and all of us together can make it grow, where every teen with autism can be a part of it.

“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 – Be Still

July 29, 2010 27 comments

Photo by Susan Frank Lowe

This “In Their Own Words” is written by Cheairs Frank Graves, a Charlottesville, Va. mother of two. Her son has autism.

“Be still and know that I am with you.”

These are words that I have heard in church and at Vespers during my days at summer camp, but it is my son with autism who is teaching me the meaning of these nine words.

“With you” is not exactly how I would describe my ongoing relationship with my son. There are days when he is present, laughing and smiling, and there are days when rolling on the floor and dropping marbles in front of his eyes are his activities of choice.  Words cannot describe the sadness I have felt when my son turns his back to me when I try to play with him or when he does not respond to his name. It is an empty feeling – a feeling of failure – and feelings of why.

But along this journey my son is teaching me. If I listen hard enough, he is screaming, “Enter my world!” when he turns his back to me.  If I sit next to him while he drops the marbles in front of his eyes, he might just look at me and smile.

“Be still and know that I am with you.”

If I lie on the carpet when he is rolling on the floor, he moves next to me.

“Be still and know that I am with you.”

If I sit next to him in the front yard, listening and repeating words back to  him – words that he is saying, then I can see his beautiful, blue eyes light up and his crooked smile appear.

“Be still and know that I am with you.”

If I am very still as he comes down the stairs in the morning, I can begin to smile at his ritual of closing off the bedroom and bathroom doors that lead into our room.

“Be still and know that I am with you.”

If I am present when he crawls into the bed and folds himself into the warm comforter, I can celebrate the little life that is lying next to me.

“Be still and know that I am with you.”

If I wrap my arms around him as he puts his head on my chest, I can hear him breathe. My sweet little boy.  My precious little boy.

Mommy, “Be still and know that I am with you.”

“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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