Autism Speaks Official Blog

This “In Their Own Words” post by Katelyn Jolley, whose brother Jon has autism. Katelyn is a homeschool graduate, musician, guitar teacher, and sister to a brother with autism. She is also the founder of the Facebook group Siblings of Autistic Kids.

“Ay-yoo,” Jon said.  His head was buried in my shoulder; I could hear the muffled sound of his helpless hiccuping.  In that moment, I felt my frustration dwindle and disappear as it was replaced by something else: tears.  Silent, warm tears to match my brother’s.  We cried together.

It had been another breakdown.  I hadn’t let him play outside, and he didn’t like that.  During these severe tantrums, I had learned, it was nearly impossible to comfort him; I had waited for the storm to blow over.

As I knelt there comforting my sobbing brother, I found myself reflecting on the past two years of our lives.

The very first time I saw my brother, Jon, he was nineteen months old.  It was a chilly February weekday.  As a family, we had made the decision to adopt him.  I remember giving Jon a hug for the first time; he just stood there, stiff.  “He’ll get used to you,” my parents encouraged.

Not long after Jon’s adoption, we started noticing unusual traits: head banging, toe walking, screaming, and lack of responsiveness, to name a few.  In the beginning, we simply equated these things with personality quirks.  But there was another mystery: Jon didn’t get hurt. He didn’t feel pain; at least, he didn’t show it outwardly.  We thought for awhile that he was simply “tough.”  He was a husky kid, after all.  Maybe he had some early-onset phobia of emotional showcases.  Who knew?

We soon realized, however, that something more was going on.  We took him to an Occupational Therapist, who diagnosed him with Sensory Processing Disorder (SPD).  But even then, armed with a fresh diagnosis, we had a feeling that wasn’t the full story.

Jon’s tantrums continued to worsen.  His second birthday came and went, and his communication skills were next to nada.  His younger brother began to catch up to him in developmental milestones.  With time passing and Jon not progressing, we decided to get a second opinion.  We now know that Jon (three and a half) has Autism Spectrum Disorder (ASD).

As anyone in my shoes will agree, being a sibling of an autistic kid is not always easy.  For siblings of kids with special needs, denial is often present.  But I have learned that love, unconditional love, is amazing at filling in the gaps caused by frustration and confusion. I’ve found truth in the sentiment, “(S)He who laughs, lasts.”  I’ve learned that acceptance is a mindset. Having an autistic sibling can be a beautiful journey.  It is a remarkably life changing, character building experience – if you let it be.  Along my journey as a sibling of an autistic kid, I’ve learned things I never knew, felt things I’ve never felt, and loved in ways I never knew I could.

If life hands you a lemon, don’t just make lemonade; make the best lemonade on earth and give everyone a straw.

As I knelt there holding my priceless, beautiful brother, the memories kept coming and I felt a sense of overwhelming love.  I wanted to help him; I wanted to keep him safe.

“Ay-yoo,” Jon said again, and tears filled my eyes, for I knew something: “Ay-yoo” was his own imperfect, wonderful way of saying, “I love you too.”

“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.

Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

This “In Their Own Words” is by Karen Weaver. Karen is the mother of three sons, two of which have Asperger Syndrome. To read more visit her blog, “Confessions of an Asperger’s Mom.”

I am throwing my hands up to this thing called Aspergers today.  I don’t know what else to do but pray for my children, especially my 15 year-old son Red.

Today I am praying for his mind to be opened to new possibilities.

I am praying for love, acceptance and understanding from his peers.

I am praying for the day when he will find a special friends or group of friends who will be there for him and accept him just as he is. I know they’re out there.

I am praying that he will listen and hear when others are trying to help him -that he won’t be so locked into his own thought process that he can’t let new insights seep through and actually help him to change his life for the better. I realize that I can not do this for him, as much as I want to.  He has to do this for himself.

I am praying for guidance to advocate for him, to put the right supports in place for him, to parent him in the most loving and honorable way.

I pray for PATIENCE.  I need a large dose of that.

I pray that those who are employed to support him will do their jobs to the best of their ability, that they will not let him fall through the cracks. That they will see the possibilities in him. That they will assist me in teaching him self-responsibility and that they will do so in a loving way.

I pray that he will not give in to depression and self-loathing.

I pray that he will make it through this day, this week, this year having grown, learned and matured.  That he will head into his future being everything that he can be.

I pray that he will grow up to be a positive contribution to society -that he will be confident and able to take care of himself and be a responsible adult.

I hope you will pray with me.  If you don’t believe in prayer -that you will meditate and send positive thoughts our way.

I have a tall order here -and we need all the help we can get.

“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.

This “In Their Own Words” is by Pranita Sookai, a junior at New York University, majoring in Journalism and Economics. She is a recipient of the JPMorgan Chase Smart Start Scholarship.

People sometimes look at the world as if they were staring through a view finder. They are disconnected. They step away from the lenses with a generalized and often inaccurate understanding of the community in the distance.  The people being observed here become ingrained in this broad picture, but their reality is not seen.

Greater awareness would help the public connect to these communities, such as to the community of families affected by autism.

Autism, one of the most prevalent childhood disorders, affects more children than juvenile diabetes, childhood cancer, and pediatric aids combined.¹ Yet, autism often goes unnoticed. It is hardly picked up by the mainstream media, and because of this, their group suffers from misrepresentation in the public eye.

Autism is a general name that groups together a complex set of brain disorders known as Pervasive Developmental Disorders, or PDD. This group includes Pervasive Developmental Disorder – Not Otherwise Specified, Asperger’s Syndrome, Rett Syndrome, and Childhood Disintegrative Disorder.

Autism usually appears during the first 18 to 36 months of a child’s life. Because the symptoms vary, the paths to confirming a diagnosis vary as well. The main signs of autism involve difficulties in communication, social development, and the development of routine behavioral patterns. Children with autism can be verbal or non-verbal. They have difficulty expressing emotions, understanding the emotions of others, and having a conversation. They also form behavioral patterns, which include repeating words, or obsessively following routines. In some cases, the children are identified as having developmental delays before obtaining a diagnosis. Although there is no cure, an early diagnosis often results in dramatically better outcomes for autistic individuals because they can begin therapy sooner. Unfortunately, sometimes a child’s diagnosis of autism is delayed.

Because there is no medical test for autism, diagnosis is based on the observation of a child’s behavior, as well as on educational and psychological examinations. There is also no know specific cause for autism. But, abnormalities can be seen in an autistic child’s brain structure when compared to the brain of a non-autistic child. Currently, researchers are investigating the suspected triggers of the disorder, which include genetic inheritance and environmental factors. ²

The stark severity of the disease can devastate families, and can be devastating to the individual’s lifelong development. Michael Giangregorio is the Chair of Autism Speaks Long Island Executive Committee, Chair of the Leadership Council, and a Board Member of The Elija School. He is also the father of a child who suffers from autism.³

When asked what his greatest concern is for his son, he said, “What will happen when I die?  Who will look out for my son’s needs? Who will ensure that he will remain safe when I am gone?  He is nonverbal, and needs help with everything, even the simplest tasks most of us take for granted.”

Families who are affected by autism are concerned with the future of their children. They want to know about the things that directly affect them. This includes information on medical developments, legislation on autism, and funding for autism treatment, research, and programs.

Yet, the intersection of the mainstream media and autism occurs in a way that does not really touch on the concerns of the autism community. Instead, journalism overlooks the important developments. To the general public, the concerns of these families are not conveyed, and the public therefore maintains an inaccurate image of these people. The stories published are subject to sensationalism and an emotional bias. Even more so, some families affected by autism don’t have access to the news they need about their group.

Looking through some of the main news outlets– The New York Times, The Wall Street Journal, The Washington Post, NBC, ABC, CBS, and Fox– there is little coverage that is relevant to the community itself.

According to Michael, the mainstream media misses the mark when covering autism. He said, “When many people think of autism they think of Dustin Hoffman’s character in Rain Man.  The media needs to help get the word out.  It needs to help break the stereotype. It needs to help educate the general public.”

Stereotypes about people with autism are not uncommon in society. In his work on stereotypes of autism, Douwe Draaisma acknowledged that most of the public’s understanding of autism comes from the way it is represented in novels and movies. In an example of autism stereotypes, he describes Sigourney Weaver’s character in Snow Cake. He says, “We understand why Linda is carefully aligning shoes in the hallway, for we all know that autistic people hate it when things are in disarray. We understand why she is fascinated by the spinning of a shiny coin. We understand why she throws a temper tantrum when people try to touch her.”⁴

An article published by USA Today does nothing to correct the inaccurate images that the public maintains about autistic children. It describes a new airport check in program, where autistic children can learn about flying.⁵ But, the article fails to acknowledge that autism can take many forms, and that some children diagnosed with autism have relatively mild symptoms. Instead, it assumes that autistic children generally are not capable of handling flying, and they need to be trained so that when they reach adulthood, they would have had the experience. The article belittles them.

It quotes Wendy Ross, a developmental pediatrician at Albert Einstein Medical Center. She says, “New or unexpected things that have lights, sounds, movement can make them more likely to get upset or have a tantrum.” She later continues, saying, “Many families with autistic children are reluctant to fly and often drive long distances for family vacations. It’s a large portion of the flying public to ignore.”

This piece of autism news does nothing to let the public truly connect to the community. It does not put the readers in touch with the autistic individual or his family. Instead, it gives a superficial account, and redistributes throughout the public the stereotype that autistic people are generally incapable and emotionally unstable.

When looking at other types of autism news, the coverage seems to linger along the side of soft, over-romantic, and nonetheless irrelevant. Although emotional stories are nice to hear, and can allow the public to see the great strides that autistic individuals make, the autistic community faces a lack of media coverage that is truly relevant to their needs. An example of this is the lack of reporting on changes in autism health care coverage. Instead, the media focuses on sensational stories. Here, there is an imbalance between what the community wants to see in the news, and how journalism portrays the community to the public.

A recent New York Times’ article⁶ on autistic children falls into this category of sensationally heart-warming stories. It focuses on the interaction of therapy dogs with autistic children. The article describes the positive effects that dogs can have on improving the communication skills of moderately to severely autistic children. However, the article only highlights two residential autistic centers, and acknowledges that success is found on a case-by-case basis.

In this instance, journalism is not serving the autistic community well because it focuses on the things that don’t apply to most autistic individuals and their family members. Individual success stories, although a testament to human dedication and progress, is relatively extraordinary. When the media focuses on these occurrences, it leads to sensationalized and biased coverage.

For Michael, the mainstream media does a poor job of reporting on things that are important to his community. He says, “ Knowing your rights as a parent of a child with autism or as an individual with autism is the keys to success.  For example, in New York State, the Department of Education just decreased services for speech and language from 5 times per week to 2 times per week. This happened without any hype. It just passed under the radar. This is so important to our community yet it was only picked up by one local television station.”

The television station that did cover this key piece of news is CBS.⁷ Because funding and legislation about autism heath care coverage affects the entire community, reporting on these events is critical to serving the group well. According to Michael, “Autism receives less funding per incidence than any other disorder. For example, juvenile diabetes affects 1 in 500 and receives $156mm in funding.  Autism affects 1 in 110 and receives $79mm in funding. With a NIH budget of $30 billion in 2008, $118mm went directly to autism research, which represents .3%. “

The lack of news about funding and legislation becomes a greater problem when autistic individuals depend on the mainstream media for updated information. If the media does not satisfy this demand, people in the community who do not have many other resources become disadvantaged.

Unlike most of the journalism about this community, stories on medical advancements are more widely covered and directly address the community’s concerns. Newsday, Business Week, and Time magazine are a few outlets that covered the recent development of a brain scan that can possibly detect autism.⁸ The researchers used a brain imaging test that shows the connections within the brain in order to distinguish between an autistic brain and a non-autistic brain. They successfully identified the autistic person more than 90 percent of the time.

A breakthrough like this is a critical piece of information for this community because it can lead to the early detection of autism. In this case, the mainstream media was the main component in passing along this information. Generally, journalism serves the autistic community well when covering these important medical advances.

With an increase in reporting news that is important to the autistic community, the public will have a greater understanding of who these people really are. Their concerns will be more widely acknowledged, and they will have more access to the information they need.

To better serve the community, mainstream journalists need to move away from sensationalist and stereotypical reporting. They need to fill the gap between the community and the rest of the public by digging deeper, and covering topics that appear in specialized publications such as Psychology Today and Scientific American. By doing this, the public and the autistic community will benefit from more meaningful and relevant journalism.

Instead of looking at the community from a distance, the public will be able to look inside and connect with its people. Journalism will no longer act as a view finder, but will allow the public to travel into the communities, and learn about their realities.

¹ What is Autism. Autism Speaks.

<http://www.autismspeaks.org/whatisit/index.php>

² What is Austism. Autism Society.

<http://www.autism-society.org/site/PageServer?pagename=about_whatcauses>

³ Michael Giangregorio. (516) 398-5721

⁴ Douwe Draaisma. Stereotypes of Autism. Heymans Institute, University of Groningen, 2009.

< http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677582/>

⁵ Yu, Roger. Airport Check-in: Autistic kids learn about flying. USA Today.

< http://www.usatoday.com/travel/flights/2010-11-29-airportcheckin29_ST_N.htm>

⁶ Jones, Karen. “For Autistic Children, Therapy on Four Legs.” 10 November 2010.

<http://www.nytimes.com/2010/11/11/giving/11DOGS.html>

⁷“Paterson Vetoes NY Autism Treatment Insurance Bill.” CBS New York, 21 October 2010.

< http://newyork.cbslocal.com/2010/10/21/paterson-vetoes-ny-autism-treatment-insurance-bill/>

⁸ Melnick, Meredith. “Study: More Hope for a Brain Scan for Autism”. Time Magazine, 3 December 2010.

< http://healthland.time.com/2010/12/03/study-more-hope-for-a-brain-scan-for-autism/>

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

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

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

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

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

*I’m grateful for Josh’s laugh.

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

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

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

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

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

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

This “In Their Own Words” is by Stuart Duncan. His son Cameron has autism and was diagnosed at two and a half. Stuart lives in Toronto, Canada. Check out his Facebook and Twitter.

Dear Future,

I have to be honest, I don’t know you very well.  I don’t know if I can count on you or how reliable you’ll be. I’d like to think that you have only good intentions and that you’ll only get better, but I’m not naive. I know that you’re just as uncertain as I am and quite frankly, that scares me.

You see, my child has autism and as such, the past has presented me with a lot of fears as well as challenges that I’ve had to learn to overcome. I’ve also had to learn how to teach my child to overcome them. The past tends to remind me of those that turned their backs on us, had nothing left to help us with, gave us a lot more questions than answers and basically dropped a bomb on us before leaving us to the cold. To put it mildly, the past has not been too kind to my family. I’d much rather forget the past and move on, which is where you come in.

Dear future, I’m coming to you with an open mind. I know you’re not perfect and that there is already a lot of demand being placed on you. But I have to make you understand that I have a lot riding on you as well. I need you to be kind and compassionate. More so, I need you to have a lot of understanding and to be very accepting.

You see, I don’t know how much longer I’ll be around to take care of my child. And my child needs me so very much. Autism has made my child and I feel very alone in this world. We are looking to you to pick up where I will eventually leave off. I will be depending on you to be there for my child when I no longer can be and I’ll be depending on you to be bright and loving.

I am doing the best that I can now to prepare my child for you, but that’s a daunting task for the best of us. Since my child has autism, it’s just so very much harder. My child needs more guidance, more support, more understanding and more acceptance. The present provides some of these things and it has been helpful. But if I wasn’t here, it wouldn’t be enough.

The present is very nice and friendly but to be honest, I feel like I’m in a dentist’s waiting room and the present is the receptionist. I’m asked a lot of questions to which I answer, but have no idea what any of it means. I’m made to feel welcome with some magazine articles to read and the present even makes some small talk that resembles information sharing. But again, gives me no real answers.

For what seems like forever, I sit and stare at the present while they are constantly writing things down, filing things and taking phone calls from everyone and no one, while I sit there trying to keep my child calm. We’re waiting for you… the future.

Dear future, I’m going to need for you to be prepared. I need for you to do more than just wait until I get to you. The past gave me an awful lot of questions for which the present had no answers to. I will be needing you to provide those answers.

I can’t imagine what life will be like for my child if you don’t have those answers. Answers such as where my child will live, and with whom. Will my child job have a job waiting? Will there be better medications and treatments available that offer more consistent results? Will there be love waiting for my child with the possibilities of a family as well?

I have no one else. You’re it. I’m sending you my child whether you like it or not… for better or worse. Dear future, if you’re not ready for that, please do whatever it is you have to do to be ready. My name will be called soon and my child will be needing you. So I’m needing you right now. Please be ready.

“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.

This is a loving tribute by  Jeanette Dakessian about her father. She is the mother of a 10-year-old son with autism, and her father was a huge part of her son’s life.

I have a 10 year old , mostly nonverbal, son who has autism. He was so attached to  my dad, who he called grampy for many years, until my dad passed away last November from lung cancer.

My dad would come to my house three times a week to meet Tyler’s van at  my house and bring him to daycare because I worked full time, and he was retired. He would get my daughter off the bus as well. Grampy gave Tyler cookies every day for snack and Tyler loved that! He was always very excited when grampy was waiting for him at the house.  He would say “Gampy!!!!” anytime he saw a red truck, which is what my dad drove.

My dad would stop at my house multiple times a week to see the kids. Tyler would run into his bedroom to get his small photo album, come back out into the living room, and grab grampys arm pulling him over to the couch. Then he would take his arm and pull it over his shoulders so grampy was hugging him!

Then he would point at pictures of our family and look at Grampy, in the eyes, which he often has a difficult time doing, and say who ever or whatever was in the picture. For example…tree, ball, bus, Dee Dee(my sister) Di Di(my other sister), and so forth.

My dad would take his baseball hat and put it on backwards because Tyler would look at him and say, “uh oh!!” Then he would take it off my dad and put it back on the right way. It was their special thing, and oh so cute!

Tyler would not take anyone else’s hand and pull them to the couch. Only his Grampy. He loved him a lot and my dad loved him right back.

I brought Tyler to the wake last year and Tyler looked at him and said “night night!”  He does not understand death and it was bittersweet.  It has been a year since my father passed, and to this day, he still says ” Gampy,” when he sees a red truck. He will jump up and down and look so excited thinking “Gampy is back to see me.” It is sad to see that Tyler is disappointed when its not him, but he is so blessed to have had Gampy in his life.

We would like to hear from you! Share your story about your experience as a grandparent of a child with autism. E-mail us at editors@autismspeaks.org. For more information about how grandparents make a difference, visit us here.

This “In Their Own Words” post is by Nicholas James DeTommaso. Nicholas recently earned the high distinction of Eagle Scout by creating a website to document and archive the photos,memorabilia and create oral histories of the local American Legion Post 1718 following the sale of their building. He now attends Cooper Union for the Advancement of Arts and Sciences in New York City on full scholarship. Nicholas’s hopes to develop video games and  programming as social learning tools for those who find normal socialization difficult.

At two years old I stopped crying and laughing out loud; I had lost my vocabulary word by word and, I no longer laughed or cried out loud. I had autism, specifically, high-functioning Asperger Syndrome. Communication skills were nonexistent. I had to relearn all of my vocabulary. Word by word, I gained it back, but as I got older, there were social ramifications—talking to new friends was tough. I had a few quirks, sure—I was frustrated at seemingly random times. One other thing—I never said, “Thank you.”

It seemed I could develop friendships and keep them by playing video games. How could something designed for mindless entertainment help an autistic child improve communication and social skills? As James Paul Gee has stated in his 2003 book What Video Games Have to Teach Us About Learning and Literacy, “The video game environment is an environment where everyone has equal access and is treated equitably.” That even starting field was the door through which I could now enter the social world of play.

The logic of computer programming and electrical engineering is fascinating to me. The art of creating programs and to see them work through—to me there is no feeling quite like it. It is a feeling of creation, of satisfaction. By building on these known basics, I’d like to create games, learning tools through fun, which could start autistic children to not only communicate, but also grow socially, in the way I did.

My gift from others, my ability to speak and act socially, is a gift I have never forgotten. I frequently remind myself how lucky I am to have received the help I have over the years, and to that end I always endeavor to give back. In doing so, I not only feel the satisfaction of helping those less fortunate than I, but I also feel happy to repay in part the gifts given to me. Service to others has always been a tenet of my family, and my participation in volunteer groups such as the Boy Scouts, the Red Cross, and my church gives me the opportunity to do just that. I suppose, in the end, that it’s my way of saying, “thank you.”

This “In Their Own Words” is by Jennifer. Her daughter Sienna is 3 years-old and was diagnosed at 20 months. To read more check out her blog, Fingerprints of Autism.

The dreams that I had for you were many when you were growing inside me.

When I finally saw your precious face my dreams were coming true.

Slowly my dreams faded away as you started to spiral downward into a dark world.

When I realized you had autism my dreams were torn from me!

When we were fighting our way through the confusion of therapy and treatment my dreams were of healing.

When you started preschool my dreams were of acceptance, friendship, and fun.

Now when I think about my dreams for you they are the same as they were in the beginning!

My dreams for you never left me!

“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.

Derrick is the father of two wonderful children, one of which, Lucas, as autism. He is a devoted member to the autism community, and has been involved in activity for years. He and his wife, Sandrine, created the South Carolina Autism Services Directory to help parents locate services available for autism, and The LUCAS Network (Loving Unconditionally Children with Autism Support). He is also the Family Services Liaison for Autism Speaks in South Carolina. Derrick succeeded in getting two buildings in South Carolina to “Light It Up Blue” this year, and has worked to light up the BMW Zentrum Museum2011  Campaign.

What does autism mean to you?

What would your answer be if someone asked you this question? I guess it would depend on how you have been personally affected by autism. But instead of focusing on all the different answers someone else would possibly give, let me answer the question from my point of view.

Autism means so many different things to me. It is at the same time my salvation and my tragedy.  Autism came into my world back in October of 2001 when my son was diagnosed.  At that time, it was the end of all the dreams I had in my head of what my son might become.  It was a time of entering into an unknown world full of alien language and signs I could not read or understand. I entered into a completely new culture in which I had to learn by trial and error. Living in France and Austria in my early 20’s did nothing to prepare me for this new world.  The movie Rainman was so far from my reality. Every parent I met that had a child with autism had a child that was so different from mine. My wife bought books to read and asked me to read them as well. I would pick them up and start and then put them down again. I could not wrap my head around what I was reading. It was as if it was written in Chinese. I just could not accept this world that I had been thrown into and was being forced to be a part of. For two years I fought and refused to accept this thing called autism. I could not accept being told that my son would never talk or get a job or drive a car or go to his high school prom. I was tired of being told what my son would never do. How dare they! How the Hell could they know what he would become! Then finally, depression set in and although I tried my best to hide it from my wife and family, I gave up for a few months. I think that Lucas could sense the despair because just when both his mother and I would think he would never do this or that, he would do it the next day to show us that he could.  After about a year of ABA we finally started seeing some signs of progress. Slowly at first but then he would have a burst, as we would call them, of progress. I could see the real Lucas struggling to come out from behind the veil of autism and I saw for the first time my son, his desire to be seen and heard by his father and to have his father fight for him as he was fighting for himself. From that moment on, my way of viewing autism changed. It went from being my worst nightmare to my saving grace.  As I have watched my son grow in all senses of the word, I have seen a child so full of love, so innocent, and so strong of will attract one person after the other into his life and the impact has been enormous for all of us who have been lucky enough to have him in our lives. To know Lucas is to love him. His strong will to succeed has transformed me into a father that will have the same will and determination to advocate for Lucas and others like him until the day I die. Now, although I still wish my son did not have autism, I cannot imagine my world without Lucas as he is. Autism to me is that one piece of the puzzle that you know is there but have not yet found; but you know when you do find it and complete that puzzle, you will have the most beautiful and complete picture you have ever seen. For me and Lucas, together we are putting those puzzle pieces in place one piece at a time and although we are currently only half way to finishing that picture, together we will continue to put the puzzle pieces into place.

“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.

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

“Counted to 100 by himself in front of the entire class during circle time!” That is what his school note said.  I looked at the note in disbelief―my little Margaret-Ann jumping up and down next to me- voice getting louder and louder that she needs a snack. I read the note again. I swell with pride and disbelief. “Mommy, mommy, I am hungry.” Snapped back to the present I take my daughter’s hand and we head to the kitchen to get something to eat.  I get my daughter her favorite snack― goldfish with apple juice and I smile.

If someone had ever told when my son was first diagnosed with autism at the age of two that he would one day stand in front of his kindergarten classroom and count to 100― I would have thought they were crazy.  My two year old could not make the first utterance of any words, could not play with any toy appropriately, and would not respond to his name when I called to him. What on earth would make me think that he would one day be able to count to that magical number of 100?

Well, let me tell you my son has been working!  And when I am feeling hopeless about the progress he is making -he shows me the fight and determination that he has in him to move forward.  I think a little part of him is grinning inside just saying, “Mommy just you wait-when I am ready I am going to show what I can do.” I think he is saying, “Mommy you need to be patient-you need to wait.  I can do so many things it just takes me longer, but just when you least expect it I am going to show you my stuff.”  Well, show me his stuff is exactly what he did on that sunny Monday at school.

I can just see him as his teacher asks him if he wants to count today. I can see him bright eyed say, “Yes, Catherine!” and jump to the front of the circle and  begin to count…..1,2,3,4,5  I can see the determination in his face as he pauses and thinks of the next number.  I can see his classmates looking wide eyed in pure amazement as he counts higher and higher. I can see his teachers holding their breath and feel their hearts pounding with unsure excitement not knowing how high he will count.  I can see everyone’s anticipation―getting ready to clap because he has made it to 50.  Then I can feel the whirl of energy as he continues 51, 52, 53, 54.  I can see his fellow kindergartners giving him the thumbs up as he reaches 71, 72, 73, 74, 75.  Then I can feel the confidence in his words the determination that my little guy is going to count all the way to 100. I can hear his little monotone voice grow strong with every number 91, 92, 93,94, 95, 96, 97―pure concentration 98,99―He is going to do it!!! With a huge smile and a look of unimaginable pride 100!!!!  I can feel the claps and cheers for my son in my bones. I can feel the love that surrounds him from his teachers and classmates in my heart. I can see the huge smile of pride on his face!

Now I was not there on this most special Monday morning at Hollymead Elementary School, but as my friend Catherine who is one of the teacher’s in the class recounts the event to me on the phone that night I can see it all―the amazing triumphant of it all!  I get off the phone and as I sit in bed with my husband and tell him the whole story.  He does not have to say anything. The tears that fill his eyes say it all.

And now my son sound asleep upstairs. I can hear the words coming from his sweet head-“Mommy you need to be patient you need to wait. Just give me a little time” I put my head on my pillow and I close my eyes. “Ok, Dawson I hear you.  I am trying. Patients and waiting―I got it. I am working on it I am working hard just like you……oh, how I love you my sweet boy―my sweet counting to 100 little boy!”

“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.