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In Their Own Words – That Day

February 26, 2011 44 comments

This ‘In Their Own Words’ post is by Tracy Miranda.

I will never forget that day – December 7, 2010. After months of speculation, questions and wonder, it was official. My son was being placed on the Autism Spectrum. There were tears of course; immediately. Not that I have ever experienced it myself, but it reminded me of when people talk about a near-death experience. In an instant, my son’s whole life passed through my head and there were so many unanswered questions. Will he be okay? Will he be bullied? Will he get married? Will people think he’s stupid?  I don’t know. I won’t know until he gets there. I allowed myself to cry for a couple of days and that was it. Tears weren’t going to change anything. I wasn’t crying because of the diagnosis. I was crying because as a mother you want to do everything to ensure that life will be great for your child, and I just couldn’t guarantee that. I couldn’t fix it.

My next priority was to learn.  Boy was that a bit overwhelming. Like others, I was “aware” of autism, but didn’t totally understand it. In his evaluation, the psychologist report had mentioned that he had the potential to be extremely smart, but may be socially awkward. We are huge fans of “The Big Bang Theory” and after reading that my first thought was “oh my gosh we’re raising Sheldon!”

It was nice to be able to laugh at the situation, but research was obviously necessary. After doing an internet search for autism, I felt lost. There were so many websites, books, and blogs I didn’t know where to start. Who was I supposed to believe when the websites contradict each other? I remembered that teachers at my son’s school had done the Autism Speaks Walk that we had donated to, so that’s where I started. I came across a blog submission that brought me to tears. It was a letter entitled “Dear Future,” by Stuart Duncan. It was amazing; exactly what I was feeling. I didn’t know what the future would hold, but I wanted to be in it for my son.

I went to his website and immediately emailed him. I had to tell him how much that letter affected me and what I was going through. I needed someone to hear me that could relate to my situation. It was only the first week and I already found a friend. He answered my questions, put my mind at ease and introduced me to the amazing community of autism parents on Twitter. Just like a lot of people, I thought that Twitter was for useless facts about your favorite celebrities. I could not have been more wrong. I found parents just like me who were there to support each other and stick together. When you think that nobody else is going to understand you, someone will. Every time I sent a tweet with a question, I got answers from people who had been there. If I sent an update on something cool that my son did, I received cheers from people who had lived it. They got me. They were me.

My husband and I were taking the news a little different. He kept a lot of his feelings inside to process them while I wanted to share with everyone and start building my support network immediately. Mind you, some of them weren’t sure what to say, but I’m not sure I knew what I needed to hear either.  I did get a lot of people telling me that they knew “so and so” who had a child/grandchild/cousin etc who had autism and they were doing great, so I shouldn’t worry at all. Um, no offense, but that’s just not true. One of the biggest misconceptions about autism is remembering that it is a spectrum and everyone is different. Right now we have no idea what the future will bring.  At that time, I was still trying to process that it was my son; I didn’t care who else was dealing with it. I’m not that insensitive now, mind you, but in the beginning all that mattered was him.

After a couple of weeks when things were starting to get settled it was time for Christmas. I was learning a lot about what to do and what to expect for my son. However, I wanted to know how I could help others. It was shortly after Christmas when I found the answer. My son had received more presents than he actually needed and his birthday was only a few weeks away. Already family and friends were asking “what does he need?” Ummm, nothing. Am I a bad mother for saying that? Am I going to deprive him of presents from loved ones? No, but I wanted to do something better.

We decided to make his birthday have purpose, help others, and allow those that cared about him to do something meaningful. Give a gift that helps lots of kids. Bottom line, my son didn’t need any more “stuff.” I went back to the Autism Speaks website and found the Puzzle Builder fundraiser. I thought it would be perfect! I uploaded pictures of my son and we were ready to go. When I sent out the invitations for his birthday party, I sent a letter to everyone explaining what we were doing and why we were doing it. I got some very positive feedback about our choice. Of course I had to brag about how great our family and friends are and what we did, so I went back to my support system on Twitter.

Imagine my surprise when Autism Speaks answered me back and asked if I wanted to share my story. What??? Me??? Absolutely! So here I am. Our amazing family and friends raised approximately $800 with his puzzles!! That is a LOT of money for my little man’s birthday.  That was far beyond what I would have expected and fills my heart with joy and pride. We made a difference. My son still had a fun party and of course still got some gifts.

I know that the road ahead is still a journey of unanswered questions. However, my son is making great progress. He is very high functioning and doing great in school. I know how lucky I am that he loves affection because many parents of children with autism don’t get to experience that. My heart breaks for them. No matter what lies ahead, my son is the biggest blessing in my life and he makes me laugh everyday.  When people want to feel sorry for me, I remind them how blessed we are. Things could certainly be a lot worse. Autism is what my son has, not who he is.

We will be just fine.

To check out Tracy’s puzzle click here!

For more information about Puzzlebuilder visit here!

“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 – Experience Breeds Ability

February 17, 2011 22 comments

This ‘In Their Own Words’ post is by Susan Senator, a writer, activist, and the mother of three boys. Susan is the author of “Making Peace With Autism,” and “The Autism Mom’s Survival Guide.” Please visit Susan’s website for more of her blog and other resources.

I was looking for a place to toss a shovelful of snow that I’d just dug up next to the car when I thought about Nat.  Nat was still at the group home, but we had told him that as soon as the snow stopped and we were dug out, we’d come get him.  I threw the snow right or maybe left — we are really running out of space and the drifts bordering the driveway are about five feet high by now — and I imagined Nat and his brothers shoveling.

We are all really good at shoveling these days.  I pictured handing the shovel to Nat and seeing him push it down and push the snow aside.  No problem. But it used to be.  Such tantrums!  He couldn’t be outside with us.  And if we left him inside, he’d freak out in there, watching us working outside.  The horrible feelings I had, knowing I couldn’t be inside or outside.  There was no place to go, no place to be on this earth because my child was so unhappy and he could not understand what was going on.

Now he shovels snow willingly and competently.  Yet another skill, another feather in Nat’s cap.  How did this come to be?

We made him do it anyway.  We lived through tantrums.  We had shoveling (shopping days, movie outings, parties, holidays, vacations, meals, sleepless nights) days that ended badly.  Nat has been exposed to a lot of activities.  It’s as simple — and difficult — as that.  The more Nat experiences, the more he is able to do.  As soon as we realized that we needed to familiarize Nat with as many things as possible, we started to take him out, make him be around people and go to new places.  It was almost always really, really hard.  We tried a Cape Cod vacation:  terrible.  Each year, not as much.  Stayed with my parents:  it got better.  Switched to the ocean, rather than the bay side and brought boogie boards:  success.  Still difficult, because he walks in circuits and ends up too close to others’ blankets. But still, we enjoy ourselves for a lot of it.  Not all of it, but enough.

Challenger T-ball; failed.  A year later we tried Special Olympics gymnastics: success.  But bumpy success.  Nat sometimes slapped people or had tantrums or spaced out.  We stuck with it.  Or rather, Ned did.  I’m the coward of the two of us.  I find out about stuff and dream things up, but Ned very often ends up following them through. You gotta have at least one parent who doesn’t mind people staring, or an occasional pinch.  I think that even if you are a single parent, you should find a way to have a second person around sometimes.

Vacuuming.  Food shopping.  Parties.  Shoveling.  We took Nat places.  Even for abbreviated visits and outings.  Because even if he had tantrums during the event or activity, it was becoming a part of his repetoire.  Stored data.  Information he could draw on for the next time.  If there was a tiny seed of it already there in his mind, no matter how sharp and horrible that experience had been, it was now lodged there, resting in his gray matter.  And that is the most fertile ground there is.

“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 – It’s For Me

February 3, 2011 21 comments

This ‘In Their Own Words’ author is Jess, who can be found at Diary of a Mom. There she writes about life with her husband Luau* and their beautiful daughters – nine and-a-half year-old Katie*, an utterly fabulous typically a-typical fourth grader, and seven and-a-half year-old, Brooke*, a loving, talented, hilarious second grader who has autism.

It had been a long, full, long day. Yeah, I know I said long twice.

We had walked (or in Mama’s case, more accurately hobbled) around the track at the Autism Walk. We – or at least the smaller half of the we - had jumped in the bouncy house until Mama finally had to send Miss N in on a retrieval mission. We’d played in the ball pit. We’d eaten pizza at ten a.m. We’d visited with Grammy and Grandpa DD. We’d gone out to lunch. We’d had a grand old time with Miss N and Yo, B! Hell, we’d even lost a tooth for good measure.

We – or the bigger of us at least - were ready for sleep.

We were lying on Brooke’s bed, snuggling together in the dark.

After a day spent immersed in capital ‘A’ Autism – as opposed to a day immersed in little ‘a’ autism which would simply be, well, ya know .. a day – I wondered what she’d taken in.

Did she hear the speaker at the Walk that called autism a ‘disease’? Though it causes much dis-ease in our world, it is actually a disorder.

Did she hear the young adult standing in front of us repeating over and over – and over – again, “Were at the Autism Walk. That’s for me. We’re at the Autism Walk. That’s for me.”?

Did she hear the mom explaining to her grumbling son that he needed to suck it up ‘because we are walking to help the sick kids’?

Did she see the bracelet that her big sister insisted on buying that said, “I love someone with autism”?

Does she remember me talking to her about it before? On other nights, snuggled in the dark, just like this.

Did the word sink in?

Did she connect it to herself? To us? To our family? To who we are?

Does it have any meaning for her at all?

Did she notice it that day? Over and over and over again?

“Hey, Brooke,” I asked into the darkness, trying to sound casual.

“Yes, Mom?” God, how I love that clipped little version of ‘Mom’ – somewhere between Mum and Mom – the word so wonderfully hers.

“Do you know that we go to the Autism Walk because you have autism?”

I was trying hard to sound cheerful – to keep the words light.

It is so desperately important to me that she not grow up internalizing our demonization of autism. Someday she will understand these words. She will know that it is a part of her. Then what? I can’t let her hate such a huge part of her life.

She didn’t answer. She was too busy fiddling with my hair.

I know better than to think that because she isn’t ‘paying attention’ she doesn’t hear me. She may process it three days, three months or three years from now, but I’ll be damned if she’s not taking it all in.

“Baby, do you know that you have autism?”

I’ve asked this question before. I’ll ask it again.

It’s so important to me that she hears it from us and doesn’t take her understanding of autism from a man at a podium shouting for its eradication. It’s far too easy for the lines to get muddled, for the leap to take her where I dread that she might go. Where does my autism end and I begin? If I have autism does that mean that I AM autism? If autism is evil then I must be too.

Add that internal monologue to the list of my greatest fears.

“Do you know what that means, Brooke – when Mama says that you have autism?”

“Nope.”

She answered. On some level, I was getting through.

I measured my words carefully. I knew I didn’t have the luxury of paragraphs. Our world demands that a sentence – maybe two – suffice.

“Well, autism is what makes some things hard for you, baby. But it’s also part of what makes you special and wonderful and well, Brooke.”

“Yup.”

“A lot of kids at the Walk today had autism too. There are LOTS of other children just like you who have it too.”

She has the right to a community. If I can help it, my girl will know she is not alone.

“So when I wake up, the tooth fairy will bring me Blue from Blue’s Clues just like my Periwinkle. And then I will have Blue. Blue will be just like my Periwinkle.”

I smiled at her, though she couldn’t see me.

“Right baby girl, I’m sure she will.”

She’ll be ready someday. In the meantime, we lay the foundation. We demystify the words. We own them. It’s a place to start.

I stole a kiss before her head disappeared under the covers. She popped back out with a giggle and threw her little arms around my neck as we went through the charade of choosing a number for the nightly countdown. In Prairie Dawn voice, we counted to thirteen. By odds. As always.

We’ve got a long time to wade through this stuff together. One sentence, one bedtime, one Walk at a time. We’ll get through it.

And wouldn’t you know it? In the morning, under her pillow, there was Blue.


“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.

The Best Lemonade: Sentiments from a Sibling of an Autistic Kid

January 20, 2011 30 comments

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.

In Their Own Words – My Prayer

January 6, 2011 35 comments

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.

In Their Own Words – Autism in the News

January 3, 2011 5 comments

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/>


In Their Own Words – Tis the Season…

December 31, 2010 13 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.

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.

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