By Natalie Palumbo

I will never forget the very first time I spoke on the phone with Dan Olmsted. It was spring of 2013, and I was 19 years old. I was already writing for Age of Autism as their youngest contributor, and sibling advocate. Dan wanted me to assist him in creating a video on research that he, Teresa Conrick, and Mark Blaxill had collected for a presentation.

I was honored and excited to contribute to this. I was just beginning my journey into the world of animation and film, and it was before receiving formal instruction from the Motion Design department at Ringling College. The fact that this presentation was going to be shown at AutismOne absolutely thrilled me as a young advocate still finishing my senior year of high school.

Dan sent me newspaper clippings. Articles. Photographs. Everything that supported his research. It was both fascinating and eerie because one of the first children to be diagnosed with autism was born in Baltimore, Maryland just outside of my hometown. I remember distinctly having to re-record Dan saying the word “two” with three different inflections in order to properly time the visuals to the audio. Dan was so nice about it, and we both couldn't help but laugh. I will miss Dan's gentle voice. It had a nurturing quality, much like a parent reading a storybook to a child. I couldn’t help but smile whenever I heard him speak.

By Natalie Palumbo

I'm 22, a rising Motion Design senior at Ringling College of Art and Design, and my older brother Anthony has low-verbal autism.

My test animation for Concept Development class made it into "Best Of Ringling 2016", as well as being included in Ringling's Motion Design demo reel shown at PromaxBDA in New York.

https://www.youtube.com/watch?v=hCTqufjAdBw

My final project for Animation class was an analysis of "MadMapper" projection mapping software, which I'm using for senior thesis. My teacher loved it, and suggested I send it to the developers at MadMapper. They were so pleased by it, they requested that I do an analysis of their new beta features. They promoted both of my projects, and so did the Motion Design department at Ringling. 

By Natalie Palumbo

I’m 21, a junior Motion Design major at Ringling College of Art and Design, and the only sister to an older brother with low-verbal autism.

I am just finishing the long winter break with my cousins, and had an especially good time with Anthony. Over Thanksgiving, he had seen my cousin Savanna star in a school play, and sat riveted while he listened to her sing. My parents were very nervous to bring him, fearing he would not sit quietly for the performance. They made their usual deal to take turns walking him in the lobby if Anthony got restless. He did so well, when I came home for winter break, we saw two movies in the theater. One was “The Polar Express” in 4D, and “Star Wars: The Force Awakens” in 3D. He sat quietly for both, and it made me so happy.

During October, I was asked to paint a mural for the Education Foundation of Sarasota County. This was to promote a fundraising event for all the Special Education students, and I was honored to help. It was a very rewarding experience I will remember for the rest of my life. The event organizer Matt Bruback was so supportive of my schedule as a student, and very appreciative of my work. He developed a sensory belt known as the “Miracle Belt” to cope with an athletic injury, but found that it had calming benefits for people with special needs. The mural was only up for ten days, but a time lapse film was made to preserve the mural forever. Anthony calls it “Natalie Painting Fast”.

My entire fall semester had been tremendously busy, but well worth the effort. My faculty review was remarkable. They said that I was excelling in everything important to motion design, and the whole department was proud of me. That made up for so many hardships during the semester. I was overjoyed. One piece very important to me that the faculty loved was done for Experimental Animation.

We were to emulate the work of an experimental artist. I chose for inspiration a film by Chris Landreth about experimental animator Ryan Larkin. The visuals, while dark, were compelling and raw. They illustrated inner thoughts and feelings during conversations about Larkin’s career as well as the intentions of the interviewer. I could not get the images out of my head, and wanted to use that technique to talk about a defining moment in my life as a sibling. I wanted the project to be an honest reflection of me and meet my teachers’ expectations. I was very happy my teacher loved my execution of these ideas. The wonderful faculty review was a perfect way to start winter break.

By Natalie Palumbo

I’m 21, a junior Motion Design major at Ringling College of Art and Design, and the only sister to an older brother with low-verbal autism.

It was a busy summer. I spent most of it working on freelance animation for musician Jim Hossick, known affectionately in the D.C. Metropolitan area as "Kidsinger Jim". I first met "Mr. Jim" when I was in preschool with Anthony. Jim performed at our school, which was a center for special education with an integrated pre-kindergarten. During one performance, one of the special needs kids reached for Jim's guitar. Jim leaned in so he could hold the tuning keys, and just kept playing. True tolerance is so hard to come by. My mom still can't recall that moment without tears. I wanted Jim to be proud of my abilities and surpass his expectations. He was overcome. I presented “Daddy Longlegs” to my animation teacher, and he was overjoyed with the production value.  Surpassing his expectations, too, meant everything to me.

 

When I was working, Anthony would repeatedly say, "play it", and attempt to sing along. I’d never seen him do that before. The fact he was invested in my animation weighed very heavily with me. Only a select few things make it to his "over and over" list. Whenever I make art, I try to show it to Anthony. He’s a good bellwether for what is visually appealing. Anthony is the one person in my life who remains consistently kindhearted and sincere. I think of him for comfort when I'm overwhelmed by the world exploiting conflict.

There is a part of me that always feels scrutinized for caring so much about my family, especially my brother. Despite attempts to explain Anthony's situation, someone will misconstrue my concern as preoccupation and try to "wean" me off of being "so sensitive". Most making that assumption barely know me, let alone Anthony. They aren't interested in hearing any details from me, but want to persuade me to conform to their idea of what is important. They don't want to be bothered with the details of what makes my concerns so different.

By Natalie Palumbo

I’m 21, a rising junior Motion Design major at Ringling College of Art and Design, and the younger sister to a brother with low-verbal autism.

I’m facing the future with uncertainty. Wherever I look, stories regarding SB277, which severely limits vaccine exemptions in California, are being reported. People are screaming, and now a referendum to overturn it is being sought. Things are out of control, and many families like mine feel helpless. Now it seems that despite any family history of medicine or vaccine sensitivity, doctors are being compelled to dismiss reports as a coincidence, even if parental concerns are valid.  Adding to the drama are the suspicious deaths of three doctors involved in alternative medicine, including autism researcher, Dr. Jeff Bradstreet. 

As a sibling, I watch the discourse with disbelief and dread. The attacks against parents with concerns are vile. They aim to be so cruel that parents will retreat in silence. I’ve read comments where they will accuse parents of preferring their children be dead to having autism. These same people will say that we must be “genetically inferior” and yet reject a delayed or lighter schedule for medically fragile individuals. How can you claim one and deny the other?

I hear people my age repeating the same vile discourse towards parents without once researching what lies beneath their apprehension. Many began vaccinating only to have a child suffer regression or other debilitating conditions, and are fearful for their additional children. Some have a genuine concern about a vaccine schedule that has sometimes more than tripled since they were children. It does not help to have people shout at them that “vaccines don’t cause autism” when they can’t say what does. You can’t legislate belief. If a parent witnessed a startling change following a medical procedure including high fevers, screaming, hives, swollen joints, and loss of skills, you can’t convince them that they didn’t see it.

By Natalie Palumbo

I’m 20, a sophomore Motion Design major at Ringling College of Art and Design, and the younger sister to a brother with low verbal Autism. As I’m writing this, we are in the middle of Autism Awareness month. I’m choosing to acknowledge Anthony and his kindhearted nature for the time being.

I was working late on a project for class, and a big realization hit me. Anthony being blissfully unaware of the impact of his autism can be a relief to me as his only sibling. He goes about his life uninhibited by hostile debates, tragic stories, and the deliberate degradation aimed at our community daily. If you asked Anthony what autism is, he couldn’t answer. To Anthony, the word autism is a “puzzle piece” or a “ribbon” design. He cannot comprehend it as a neurological disorder because that is a concept beyond his ability to understand.

Back in high school, I was working on my senior project entitled “Autism In Society: Media Portrayal Versus Reality”. For the project, we had to assemble a book with the research information, and make a front cover with the project title. Anthony looked at my book cover and read it as “Anacin In Society”. My mom and I giggled. It was a typical Anthonyism.

For those of you unaware, a 1964 Anacin commercial appeared during the sponsor break of the Ed Sullivan Show when the Beatles performed. We both love the Beatles, and watch that DVD often. Anthony loves to quote the Anacin narrator, “Pain. Depression. Anxiety. Pain. Pain. Pain.” It makes me laugh to hear Anthony’s pseudo serious imitation of the announcer. However, his non-reaction to my project was a reminder that he has no meaningful association with the word “autism”. It was just me making “art” for school again. Anthony seems to be unaware that his communication is even “low verbal”.

Recently, there have been controversial debates, hostile language, protesting, and even talk of forced medical practices that seem outrageous to me. There is no mental break for me as a sibling. What privately devastated families like mine is being constantly paraded and dissected in the news. People are being questioned and targeted for harassment and humiliation.

There are plenty of moments during my week where I will overhear something callous on the topic of autism. It’s gotten to the point where I can’t even respond anymore. I just sigh because I’m so disheartened and exhausted by the attitude. People have developed such a mob mentality on the subject. They don’t understand, and they don’t want to understand. I stick to speaking my own truth as a sibling. 

By Natalie Palumbo

I am 20 years old, a sophomore Motion Designer at Ringling College of Art and Design, and the only sibling to an older brother with low-verbal autism. I was asked me to share my sibling perspective on the theatrical production of “The Curious Incident of the Dog in the Night-Time”. This play is based on a book by Mark Haddon, and I was treated to this theatrical production during my stay in New York.

When I first was told about this play, I was apprehensive because the main character has verbal autism. My older brother, Anthony, has low-verbal autism with persistent echolalia and severe obsessive-compulsive disorder. I was uneasy thinking about how autism is usually portrayed in the media. I was expecting a lighthearted portrayal of social quirkiness with savant skills that does not reflect what most autism families go through every day. Many on the spectrum are unable to communicate fluently, and can't live independently. I asked my mother what she thought. She said I should go view the production as an art student, and not to limit myself because of my upbringing.

We saw the production on January 6, 2015. It lasted two hours. My initial reaction during the first interval was, “Oh my God. Where do I even begin?” I had been sobbing.

This story revolves around a 15-year-old boy named Christopher who has verbal autism, and savant skills in mathematics. What surprised me about this production is that they don’t glamorize the disorder. They actually address difficult aspects, and it personally affected me. For instance, the story touched on food sensitivity, sensory overload, eye contact, understanding of concepts and metaphors, and most of all, physical contact.

Some of these I have witnessed first hand. Anthony has severe allergies to wheat, eggs, dairy, rye, as well as several environmental allergies that were not addressed until just recently. So, for all those years when Anthony was having behavioral issues, he was actually reacting to foods that were causing him pain.

The way the production addressed sensory overload was through motion design and the usage of sound. The images ranged from overlapping signs at Paddington Station all juxtaposing in a random manner accompanied with amplified sounds of advertisements and people shouting. It was disturbing for me to watch Christopher writhe in pain from all of the competing sounds.

The part that made me break down?

By Natalie Palumbo

Happy Holidays. I am 20, a sophomore motion designer at Ringling College of Art and Design, and the only sister to an older brother with low verbal autism. My brother Anthony is 23 years old (almost 24), and he aged out of school at 21. I was recently asked how Anthony was doing being home full time with me away at college. I phone home regularly to make sure my brother is alright. My mother always responds the same way, “He prefers you, but he settles for me.”

Anthony misses me. In his mind, we haven’t aged at all. We’re still little kids. Time is irrelevant. Even though we moved ten years ago to the southeast, he still idealizes our old house in Maryland. He thinks if we go back, the house will still be ours, and all of our stuff will still be there.  In addition to being very echolalic, Anthony has persistent Obsessive Compulsive Disorder. He obsesses over going back to Maryland, and requests to go several times a day, every day. I call home so Anthony can hear my voice. Anthony is low verbal, and not conversational. Mainly, he’ll just recite his always revised Christmas list, which gets longer with every passing year, or chatter about the movie he is planning in his head. Anthony will read me his casting list, which consists of everyone we know playing themselves. I just listen, and tell him it’s great. It makes Anthony happy for me to acknowledge his lists.

With my being away, Anthony has gotten very attached to my mother. He wants her to sit in his room while he plays games, even if she’s not interacting. My mom theorizes that he misses me being in the house, and settles for her being there instead. He marks on the calendar when I’ll be home again, and reminds my mother constantly when I will be, “home from Ringling”.  Under the circumstances, he has dealt with my being away very well. Anthony has visited the campus, so he knows where I am. I’ve been drawing and pursuing art since I was 10 years old. Anthony associates art with me. He seems to innately understand that I belong in art school, and so he tolerates this major change. Anthony and I have always been close, and he inspired me to draw when we couldn’t share words.  

By Natalie Palumbo

I’m 20, a sophomore Motion Designer at Ringling College of Art and Design, and the only sibling to an older brother with low-verbal autism. I had been following the controversy surrounding vaccines, the CDC Whistleblower, and Elizabeth Cohen of CNN’s subsequent ‘vaccines don’t cause autism’ comments. Cohen emphasized that, “Some people don’t hear this well,” which insulted many parents that observed regression in their children following vaccination.

This prompted a video movement of parents telling their stories of vaccination injury with the hashtags: #HearThisWell and #CDCWhistleblower. Seeing so many people tearfully share their stories compelled me to speak my piece about this issue. I had always tried to keep my focus on my sibling experience and leave the vaccine debate to others. After what happened to my older brother, I face my future fearfully and on my guard. Here is Anthony’s and my story. Hear us well.

https://www.youtube.com/watch?v=LIHHUtB4GXI

Make Them Fear, Make Them Silent: Shaming In The Age Of Autism

By Natalie Palumbo

I’m 20, a rising sophomore in Motion Design at Ringling College of Art and Design, and the only sibling to an older brother with low-verbal autism.

Whether I’m away at school, or travelling far from home, I always stay in touch with my family and monitor the news. I’ve noticed an alarming pattern that seems to be forming. There appears to be a considerable attempt to shame parents for their concerns regarding medicines, and what is safe for their children to receive in terms of vaccinations and prescriptions.

I find it disheartening as a sibling that there isn’t more compassion coming from the medical professionals. Shouldn’t the parents feel comfortable asking if the recommended medicine is safe for their children to take? Why is there this attempt to make parents refrain from asking any questions, and why is there such an effort to shame them? I’ve noticed there are more stories being unearthed about doctors disregarding previous diagnosis, and children being held hostage by hospitals as in the Justina Pelletier case.

The Justina Pelletier case involves a 14 year old girl who was suffering with mitochondrial disease. After a setback, she was taken to Children’s Hospital in Boston. Despite what the parents reported to the medical professionals, the doctors believed that the child’s problems were psychiatric and not gastrointestinal. They ordered a complete change of protocol in spite of parent objections. The parents wanted Justina discharged from the hospital so they could seek care elsewhere.

According to reports in the Boston Globe, this resulted in “A medical collision with a child in the middle”. Journalist Niel Swidey wrote that doctors at Children’s Hospital, “contacted the state’s Child Protection Agency to discuss filing ‘medical child abuse’ suspecting that Justina’s parents were interfering with her medical care and pushing for unnecessary treatments.” These allegations led to Justina being taken from her parents and placed in emergency custody by the state. After a 16 month battle, the case was resolved in favor of the parents, but there are many more stories like Justina’s.

By Natalie Palumbo

I’m 20, a rising sophomore in Motion Design at Ringling College of Art and Design, and the younger sibling of an older brother with low-verbal autism. I recently finished my first year at Ringling with all A’s and B’s, and one of my demo reels was included in the Best of Ringling gallery for 2014.

Adjusting to being away at school often made me reflect on my life at home. I thought about how different my life was compared to my peers, and how that reality made me withdraw from social groups. It made me remember the moment I realized my brother would not recover from his autism. That realization changed my life forever.

I was 14, and dealing with a few hardships. We were living in a new state away from all extended family, and my father was traveling for his job three weeks out of four. Anthony needed supervision at all times because of his language deficits, and I had to help my mom at home. At this point, I knew I wanted to pursue media arts as a career, and was making art constantly to cope with my pain. I was participating in competitive art programs, and won several regional and state competitions. Because I kept to myself, several students harassed me for being an art student, and resented my getting attention for it. It seemed to get worse when I won a billboard competition for a ‘No Smoking’ campaign. It was a dream come true for me to see my art on a billboard. It was validation that I could really make this my career. Even though it brought me more rejection from my peers, the thrill of seeing my art on a billboard meant more to me than their acceptance.

By Natalie Palumbo

I’m 19 years old, a freshman at Ringling College of Art & Design, and the only sibling to an older brother with low-verbal autism. Over my spring break, I came across two distressing articles one right after the other. Both outlined tragedies involving a child with autism, and both involved people acting in horrific ways towards these children. Disturbing to me as well was the locations where these incidents took place. Both are places I have frequented at one time or another.

According to the Herald-Tribune, a Sarasota County newspaper in Florida, “Court documents detailed how Melissa was ostracized from her half-siblings and allegedly abused. She was deprived of food and removed from Oak Park School. To control her, the Stoddards allegedly tied her to a board and duct-taped her mouth to keep from crying out. Melissa, who had autism, and was known for her tantrums, died Dec. 17, 2012.”

When I first came across this article, I was struck by the fact that it happened in Sarasota County close to where I attend college. This is a sobering reminder of why I will need to protect my brother in the future. Anthony could never imagine such cruelty, and I could never explain it to him.

If we are to understand the broad scope of individuals on the autism spectrum, we have to be made aware of all the possible outcomes, and not just an optimistic few. If autism is portrayed as a novelty for inspiration, then the public will believe that autism is nothing to worry about. Who wouldn’t want an exceptional child?

While I was still sick over the brutal details of Melissa Stoddard’s tortured life and death, another horrifying article surfaced from WJLA ABC 7 by Jay Korff. The headline read, “Two Maryland Teens Admit to Assaulting Boy with Autism”, and this excerpt stated the following:

“MECHANICSVILLE, Md. (WJLA) - St. Mary’s County authorities allege that 17-year-old Lauren Bush and another 15-year-old unnamed female – both students at Chopticon High School – videotaped multiple assaults they unleashed on a 16-year-old boy with autism.

Sheriff Tim Cameron says the allegations leveled against these girls are among the most disturbing he has dealt with in his career. He says that several times between December and February, the suspects preyed on the victim – assaulting him with a knife, kicking him in the groin, dragging him by the hair, coercing him to engage in a sex act too disturbing to broadcast, and even forcing him to walk on a partially frozen pond.”

By Natalie Palumbo

I am 19, a freshman in college, and the only sibling to an older brother with low verbal autism. For months, I had been following the heartbreaking story of Avonte Oquendo, a 14-year-old boy with non-verbal autism who went missing on October 4th, 2013. Avonte was wandering unattended in the halls of his school in Queens, New York, and went out a side door and vanished into the city. The idea that a child could be so vulnerable while in the “care” of his school is horrifying. Avonte was lost, non-verbal, and no one could find him. I could only imagine his family’s anguish when weeks of searching turned into months. I felt their agony that this could and should have been prevented. Avonte should not have been alone.

When I first heard about Avonte Oquendo, I immediately thought of my older brother, Anthony. He is 23 and has low verbal autism. He cannot live independently. I will be his caregiver when my parents are no longer able. I think about my future all the time, and my promise to care for Anthony. My concerns about keeping Anthony safe can overwhelm me. For families like mine, the thought of your loved one wandering alone and unable to communicate is our worst nightmare. That fear makes me reluctant to trust Anthony’s care to anyone outside my family.

Wandering behavior is the impulsive running or walking away from social and physical boundaries to aimlessly explore. It is a common trait for people with low and non-verbal autism, and a crippling fear for families. The escape risk is so great for some, they prefer to remain at home. Some children with autism will even wander away from trusted adults or guardians. Many of these stories end in tragedy. People with autism can be fascinated by water, and drowning is a terrifying possibility. Even those that can swim may be overwhelmed by fatigue, the elements, or unable to cry for help. It’s even worse to think that because these individuals are unable to report crimes or abuse, they are easy prey.

For months, I followed the story of Avonte’s disappearance with my heart in my throat. Every passing day, I became more afraid and heartbroken for his family. My sadness got worse when I learned Avonte had an older brother, Daniel. I put myself in his place. I can’t even imagine the terror his brother must have felt worrying about Avonte. The thought of Anthony missing filled me with unimaginable pain. In December, I shared my sibling perspective in an article hoping to spread awareness and help for Avonte. I thought about what Avonte’s family was going through over the holidays, and it humbled me. I was grateful to spend time with Anthony, and it made me hope to see Avonte home with his family soon. So many volunteers and autism families spent the holidays wishing the same thing.

On January 17, 2014, I saw an article entitled, “Police Investigate Whether Human Remains Found in Queens are Missing Autistic Teen Avonte Oquendo”. I tried not to cry in class. Human remains and clothes matching Avonte’s were found near the East River. It had been three months since Avonte had disappeared. The police continued searching for evidence for several more days. I felt heartbroken for this family as they awaited DNA tests. When they proved the remains were Avonte, I was devastated. I could only imagine their grief.

So many people volunteered hoping to bring Avonte’s family good news. After DNA results brought a tragic end to Avonte’s story, the tremendous outpouring of grief began. Web pages devoted to organizing volunteers became memorial pages. People from everywhere wrote poems, created art pieces, and sent notes of consolation to Avonte’s family. I mixed one of my sky photographs with an image of Avonte, and wrote words of concern for all the people that came together to help. This easily could have been a story about my brother, and that reality frightened me.

Managing Editor's Note: Please join us in congratulating Natalie Palumbo on her honor as an Autism Hero from the Autism Light site. Here is the entry below - please leave comments at their site.

Natalie Palumbo is 19 years old, and a college student at Ringling College of Art and Design in Florida. Her home is in Columbia, South Carolina. Her older brother Anthony has low-verbal autism. As a sibling of an individual with autism, Natalie takes very seriously a responsibility to care for her brother over his lifespan and she is a natural advocate for autism. Natalie currently serves as the sibling voice for the Age of Autism web newspaper. Her relationship with Anthony is an inspiration to other autism siblings and families. Natalie Palumbo is an Autism Light for the difference she is making in the life of her brother who has autism and how her creative art and writing encourages the greater autism community.

Artist: Natalie just successfully completed her first semester at Ringling College of Art and Design in Sarasota, Florida with an A average. She hopes to work in visual effects in film and animation. Natalie became interested in art at an early age, because drawing helped her cope with the isolation imposed by autism and was the only way she could communicate with her brother. Some of her artistic achievements already include:

• In 5th grade she was recommended to competitive fine arts programs.
• Natalie won several regional, state, and national awards for traditional, digital, and mixed media pieces.
• In 9th grade, she won the Nevitt award for “Most Outstanding Art Student” after completing all four years of Tri-District Arts Consortium in Lexington County.
• In 11th grade, she created an art piece called “NOT Born This Way”, which featured her brother Anthony in a significant way. She expressed her concern for the growing numbers of people diagnosed with autism, and how society is unprepared to deal with this increase. This concern was the subject of her senior thesis.
• Her PSA for Age of Autism took 1st Place in the PSA Category at the Notre Dame High School National Film Festival in the Spring of 2013.

Here is the Public Service Announcement that Natalie Palumbo created on autism awareness for Age of Autism in the Notre Dame High School National Film Festival.

Read the full post at Autism Light Honors Natalie Palumbo.

By Natalie Palumbo

I am 19, a freshman Motion Designer at Ringling College of Art and Design, and I have an older brother with low-verbal autism. Currently, I am enjoying a long winter break after a successful first semester. My projects for 4D were among the featured, and I am excited for next semester because I will be learning traditional animation techniques, and learning stop motion.

 Anthony is never far from my mind, even when I’m away at college. When I heard about 14-year-old Avonte Oquendo being missing, my heart sank. The feeling got worse as time grew along with my anxiousness after two months of him being missing. Personally, these kinds of stories where children end up missing, especially when they are unable to communicate, are the stories that upset me the most. I think of Anthony, and how vulnerable he is because he’s low verbal. These stories are the reason that I try to strive for success for both of us, because I want to avoid the possibility of danger and heartbreak. Some of the students do not understand why I am so driven.  I consider attending Ringling a privilege, and nothing is more important to me than the work.

About two weeks into being at Ringling, I broke my left foot while working. My camera was raised on a tripod, and I had to step on a chair to look through the viewfinder. I suffered a metatarsal fracture stepping down off the chair. For two months, I was in a medical scooter, restricted from walking. Despite the injury, I loved my classes, and my teachers were pleased with my work. I was happiest when I was working, and called home frequently to let my parents know I was okay and enjoying college. My mother was concerned that my broken foot would interfere with my adjusting to college life, and I wanted her to know that I was really all right. My teachers were so encouraging that the phone calls were to share good news more than anything else.

Despite the fact I was happy, getting all my work done, and coping on a medical scooter, a couple of freshmen felt the need to impose their opinion on me. My mother has told stories of strangers approaching her with judgments and opinions about Anthony. Anthony is physically beautiful, so many questioned his level of disability. She often said she had to endure thoughtless comments from people that didn’t understand her situation. Little did I know I was about to get a taste of those thoughtless judgments.

A couple of students (who incidentally offered me no help and showed no desire to socialize with me) took it upon themselves to question why I called home so much. I attempted to explain that I was happy, our family dynamic is different, and that we have always worked together to manage Anthony and his autism. Because we’ve always worked as a team, we do not have an adversarial parent-child dynamic. Those concepts do not apply in our house because the autism doesn’t care. I had hoped for understanding, and received judgment instead. They did not want to consider my special circumstances, and insisted I wasn’t coping. One person actually said, “But your brother isn’t here,” and insisted that she read in a book that my behavior was unhealthy. Dumbfounded and annoyed, I responded with, “Most general books do not address families with issues like mine.”

Managing Editor's Note:  Below is a research paper written by our Contributing Editor Natalie Palumbo, who is a freshman at Ringling  College of Art and Design in Florida, and sister to an older brother with autism.

By Natalie Palumbo

The Safety of Low and Non-Verbal People in the Autism Community

 The definition of Autism has evolved since the early 1990s. Symptoms and severity vary, so Autism is referred to as a 'spectrum' disorder (ASD). For many families, the diagnosis raises many fears as well as questions. Keeping their children with autism safe is the concern most agonizing.

The specific needs of people with low-verbal and non-verbal autism can be extremely challenging to manage in a public setting. Professionals in public service need to be educated on autism so they understand these challenges, and decrease the likelihood of misunderstandings that can lead to tragedy. 

There is an ongoing issue of safety among those with low-verbal and non-verbal autism. Many parents share similar concerns about proper care, and high instances of reported abuse makes parents more apprehensive to trust. After conducting an informal survey, most parents reported being fearful of wandering, and drowning, which are common occurrences in the autism community. People with autism tend to wander impulsively when not restricted by walls or barriers.  Adding to that fear is the common tendency for ASD children to be fascinated by water. 

Unless the child with autism can swim, the results can be fatal.

Pamela Mikes, whose youngest child has autism, stated that, “The multiple children found dead in, or by, new water sources just this summer, it almost seemed like weekly! This is the biggest fear ever being the parent of a child with autism by far.” Many in the autism community are also prominent advocates, and took the time to share their perspectives. Mark Blaxill is a Harvard educated business consultant, published author, autism advocate, and Editor at the daily Web magazine ‘Age of Autism’. According to Blaxill, a significant safety issue for people with autism is abuse from caregivers, and neglect in medical facilities.

Surveillance videos of children with autism being abused in school settings can be easily accessed by web news and social media. David Baier, teacher at the Alternative Education Foundation in Fort Lauderdale, Florida was convicted of physically abusing a twelve-year-old student with autism, which was captured by surveillance video recorded in July 2012. According to the police report, this child was misbehaving on a school field trip, and Baier was put in charge of managing the student. The child was taken to Baier’s classroom, and instructed to stand for five minutes. The child crouched down, and Baier scolded him to stand back up, then grabbed the child by the hair to force him to stand. The child was then told to sit so Baier could address his behavior. Baier threatened to throw the boy to the ground, then pulled the student from his chair, threw him to the floor, and pinned him down. According to police, the child did not seem physical or violent (WLPG Local 10 Miami News). 

Jennifer Larson, who has a son with autism, says she is fearful for the future when she is, “not there to protect [her son] from abuse”. Many autism parents fear for the safety of their children when they can no longer care for them. Baier was charged with two counts of child abuse. In April 2013, Baier was arrested again following additional accusations of abuse by other parents (WLPG Local 10 Miami News). Parents hope abuses never happen to their children, especially if they are vulnerable with a disability. Pam Preschlack has a fourteen year old son with autism. Preschlack is very concerned about, “cruel people who could take advantage of [her son] Will”. Preschlack tries not to let her, “mind wander there”, which is a sentiment shared by many autism parents.

By Natalie Palumbo

I am 19, a first year Motion Design major at Ringling College of Art and Design, and my older brother has low-verbal autism.  A little over a week ago, I moved into my college dorm, and so far I am fairing very well with my heavy schedule. I’m always downstairs in the colorful lobby working – so much so, that people see me as a “workaholic”. I’m not. I’ve just been waiting for this moment most of my life, and I don’t want to fail.

As usual, with every moment, there is always autism.

When my family was helping me move in, we had some complications with Anthony. He was restless, and at times echoing very loudly. Some of the echoing was “yelling dialogue” from TV or movies. We think he was trying to match the energy of everything going on. Anthony cannot be left alone, so we had to take turns watching him and try to keep up with the schedule for new students and parents. My parents had to tag-team their events so one of them could stay with Anthony. They couldn’t go to the evening celebrations for parents, but they said they were happy enough I was there. Luckily, Anthony really liked the campus, and the kids were really nice to him. I’ve met students that want to meet him now because of all the cute things I’ve said about him. Like the night before we traveled to Sarasota, I had to take a break from packing because Anthony wanted to make a spontaneous video with me. He wanted us to do the opening dance from his favorite British TV show “It Ain’t Half Hot Mum.” Anthony already had it memorized. I didn’t know it, so I had to learn fast!




At orientation, we had to visit several registration tables. There were freebies for new students at nearly all the booths. One booth had bracelets, so I chose a pink one for me, and asked if I could have a blue one for my brother. The people working the booth were very nice, but said they couldn’t because they had a limited quantity. I understood, and continued on. Shortly after that, my friend Jenette approached me with a blue bracelet for Anthony. She overheard me, and wanted Anthony to have her bracelet. I was so touched – I couldn’t believe she did that for me. Jenette is truly a kind and caring person. She reminds me so much of my best friend from back home.

By Natalie Palumbo

I am 19 years old, about to start college out of state, and I am the younger sister to a 22 year old brother with low verbal autism.  I consider this my summer of freedom. I graduated high school completing two majors -- Visual Arts, and Graphic Technology & Animation.  I am excited to be going off to college in August to study my dream career at my dream school – Motion Design at Ringling College of Art and Design.

As excited as I am about going to college, I am worried about leaving my family. I have to keep safe and watch out for myself. If anything happens to me, their lives will be altered forever. I cannot let Anthony’s future be vulnerable to danger and uncertainty. I know I will miss my brother terribly. I am going to wake up to silence, and it will be unsettling to me. I am so used to the echolalia and background noise that it almost comes as a comfort. Hearing Anthony down the hall lets me know he’s okay. Now, I will have to call to check on him. Luckily, Anthony knows where I am going. He saw the college during Precollege 2012 and on Accepted Students’ Day 2013. Even though I know I will miss him, I am ready to submerge myself in my major, and make the most of this experience. I will be able to take this knowledge anywhere to use anytime -- even to advocate for Anthony and people like him.

My college roommate is very understanding about my concerns for my brother, and really hopes

to spend time with him. This kind of genuine compassion makes me want to cry. I am always looking for people willing to just let Anthony be Anthony, and not silently judge our family or tense up. They have been very hard to find. She reached out to me after I shared the link to the WLTX feature on Anthony and me from October 2012, and how I used art to communicate with him. I was nervous about posting the feature to the Ringling Precollege 2012 group – and even more nervous about posting the link to my Age of Autism PSA which placed 1st nationally in the Notre Dame High School National Film competition for spring 2013. I was really proud. Sharing the truth about my life is hard because I can never predict the reaction. I have faced more insensitivity than sensitivity. Anthony’s autism is such a big part of my life, it’s easier to share the truth than to try and hide it. Masking myself, or hiding behind a fantasy version of myself doesn’t help. The problems I face still exist, so hiding behind a lie is of no use to me. I would rather be honest and pursue something real that will make my life better. If the truth makes people want to pull away, I would rather know sooner than later. I want people in my life that are willing to accept Anthony and exercise patience. I have met a precious handful of people, and they know who they are. 

There is a candlelight vigil for Alex Spourdalakis at 7pm CDT at St. Cyprian Catholic Church, 2601 Clinton Street, River Grove, IL 60171.  The vigil will be held outside in the garden. For those unable to attend and yet who want to honor and remember Alex's life, we invite you to share this video from our Contributing Editor Natalie Palumbo and her older brother Anthony, who has low verbal autism. 

By Natalie Palumbo



Alex Spourdalakis Video Candlelight Vigil

Tragedy in the Age of Autism

My name is Natalie. I just turned 19, and I am the younger sibling of a 22 year old brother with low verbal autism. I just graduated high school, and will be studying Motion Design at Ringling College of Art and Design in the fall.  It’s my dream major at my dream college. 

When I first heard about the stabbing death of Alex Spourdalakis, I was horrified. The thought that someone would brutally murder 14 year old Alex after he suffered a life of autism, pain, and medical apathy had me at a loss for words. However, my head was filled with overwhelming thoughts.

The questions haunting me most were, "How could this happen? Why was there no compassion for his suffering? Why did his life end so brutally?" 

I have read many tragic stories about mothers taking their lives along with the lives of their children with autism rather than be separated, or continue to live with constant, overwhelming struggle. I weep at the thought that the remaining moments of Alex’s life were filled with such agonizing pain.

I tried to focus on other things, but I could not get the violent images out of my mind. I agonized with the thought that Alex didn’t go peacefully. As Anthony’s only sibling, these stories make me reluctant to trust anybody. I feel Anthony’s vulnerability for him – he is blissfully unaware, so I hurt for both of us. 

By Dan Olmsted and Mark Blaxill. Motion design by Natalie Palumbo. With Special Thanks to Teresa Conrick. View YouTube Link How Mercury Triggered The Age of Autism here.  We will be discussing this video and more this morning at 8:30 at Autism One in the Louvre Room.

Natalie's PSA took FIRST PLACE  in the Notre Dame High School National Film competition. Congratulations, Natalie. You're an inspiration and you represent autism siblings and Age of Autism in an artistic and professional manner that will take you far.  Kim

By Natalie Palumbo

I am 18, a senior in High School, and the younger sibling of a 22 year old brother with low verbal autism.  I am busy preparing for graduation, and have good news to share.  I was accepted into the Motion Design major at Ringling College of Art and Design, which is my first choice for college.  I am currently taking a media arts class at a neighboring high school, and it has been an amazing experience. 

The Public Service Announcement that I made for class called “Age Of Autism” was submitted into the Notre Dame High School National Film competition by my teacher Ms. Esposito.  I received word last week that my PSA will be among the films being screened in Los Angeles this April.  Only runner ups and winners are screened.  Ironically, it is the same day as accepted students’ day at Ringling College.  Due to the cross country distance, they are sending me my award certificate in the mail.  I am thrilled and very grateful to be part of the screening, and am very excited to see if it won.  The support I’ve received for my PSA has been wonderful, and I’ve received many lovely notes and letters from families that told me they finally felt represented.  I worry about my future, and work very hard to do well.  I know my brother will need me, and I want us to have a good life together. 

By Natalie Palumbo

I’m 18, a senior in high school, an art student, and the younger sister of a 22 year old brother with low-verbal autism. I am a finalist in the South Carolina Young Filmmaker’s competition for 2013. We were to create a 2 minute film showcasing the beauty of one of South Carolina’s state parks.
Starting April 29th, the SCYoungFilmmakers launched a YouTube page to post the finalist’s films for people to view and “LIKE” for approximately two weeks.  You can "like" a video using a Gmail account if you don't have a YouTube account. Google owns YouTube.

Click the thumbs up LIKE button to place a vote on my film.

The top 3 winners will be chosen based on the Judge’s scores and YouTube ‘LIKES’.  Please go see my film!   I was accepted into Ringling College of Art and Design as a Motion Design major for the fall, and I hope to create visual effects in film and animation.  As much as I love my art, I love my brother more.  Anthony is my inspiration to tell stories visually, and I strive to succeed for both of us.  

I hope you enjoy my film…and if you do, please please please LIKE and SHARE! 

http://www.youtube.com/watch?v=KI6Kn8WJKXQ

Managing Editor's Note: Natalie Palumbo provides more awareness in her public service announcement than lighting the seven wonders of the world neon blue. Thank you and congratulations, Natalie.

By Natalie Palumbo

I am 18, a senior in High School, and the younger sibling of a 22 year old brother with low verbal autism.  I am busy preparing for graduation, and have good news to share.  I was accepted into the Motion Design major at Ringling College of Art and Design, which is my first choice for college.  I am currently taking a media arts class at a neighboring high school, and it has been an amazing experience. 

The Public Service Announcement that I made for class called “Age Of Autism” was submitted into the Notre Dame High School National Film competition by my teacher Ms. Esposito.  I received word last week that my PSA will be among the films being screened in Los Angeles this April.  Only runner ups and winners are screened.  Ironically, it is the same day as accepted students’ day at Ringling College.  Due to the cross country distance, they are sending me my award certificate in the mail.  I am thrilled and very grateful to be part of the screening, and am very excited to see if it won.  The support I’ve received for my PSA has been wonderful, and I’ve received many lovely notes and letters from families that told me they finally felt represented.  I worry about my future, and work very hard to do well.  I know my brother will need me, and I want us to have a good life together. 

For competition purposes, the music for my PSA had to be changed.  The winning version has been posted to YouTube, and can be found here: 

Thank you all for supporting my PSA Age of Autism.  I created it for all of us. 

Natalie Palumbo is a senior in high school and  younger sister to Anthony, who has autism. 

Managing Editor's Note: "I am the 88, my brother is the 1."  A powerful Public Service Announcement by Natalie Palumbo that should run on every TV channel, FB page and Twitter account in the country. It serves as a reminder of why we get out of bed every day and put on our game faces. For our "1" - even if we have 3.  Please share this post widely.

By Natalie Palumbo

I am 18, a senior in high school, and the sibling of an older brother with low verbal autism.  I am a visual arts student planning a career in visual effects and computer animation.  This Public Service Announcement was made as an assignment for my Media Arts class.  We were allowed to choose our subject, so I chose the one most personal to me.   My teacher loved it, and encouraged me to share it here.  I am grateful to Age of Autism for the information they share, and the opportunity to share my sibling voice on behalf of my brother. 

By Natalie Palumbo

I am 18, a senior in high school, and the only sibling of an older brother with low-verbal autism.  I recently read an article in which Dr. Hyla Class discussed certain neurological drugs, their troubling side effects, and their relationship to violent behavior. Dr. Class also discussed the disturbing trend of individuals committing violent and homicidal acts while taking these medications.  Some had even received dose increases shortly before their acts of violence were carried out.  More troubling is the reluctance to acknowledge or study this alarming trend. 

Throughout my life, I watched my parents try many different medicines for my brother.  They were trying to reduce his OCD, echolalia, or restless behavior and hoping to increase his focus and language development.  The medications either failed immediately, or had no effect.  Only one partially helped, but eventually failed.  Most meds were a horrible disaster that made Anthony’s problems worse.  We nicknamed Anthony Mr. 1%....if there was a 1% chance of experiencing an opposite reaction, that’s what we would see.  For example, if we gave Anthony a medicine to help his obsessive compulsive disorder, he would become even more OCD to the point that it was unbearable.  My parents tried each of the following at one time or another…Cylert, Ritalin, Dexedrine, Adderal, Prozac, Paxil, Anafranil, Depakote, Zoloft, Wellbutrin, Strattera, and Seroquel …all failed.  Many of the meds increased the problems they were hoping to make better.  My mom gave up on meds for six years because they made Anthony extremely difficult to handle.  Although Anthony was loud and somewhat restless, he was always sweet and gentle.  The meds made Anthony irritable, oppositional, overstimulated, and aggressive.  I could tell when a med was failing by my mother’s reaction.  She was naturally patient and had no problem remaining calm…unless Anthony was being difficult on purpose.  In that case, I would hear her struggling to keep a sweet voice while managing him. 

By Natalie Palumbo

I am 18, a senior in high school, and the younger sister of a 21 year old brother with low verbal autism. 

I recently suffered a terrible heartbreak.  My relationship of four years came to an abrupt end.  This person was very important to me, and was my closest friend.  He had gotten very close to my family, and was amazing to Anthony.  They say life is a cycle and is always changing.  For me, one thing always remains the same -- Anthony’s autism. 

I was sobbing while my mother attempted to comfort me when Anthony came thumping down the stairs.  I rarely cry, so this got his attention right away.  Anthony immediately stated, “Natalie…what’s wrong?” followed by the command, “Natalie, stop crying.”  This prompted both my mother and me to laugh through our tears.  To Anthony, it was as simple as that.  Crying is bad, so just stop doing it.  I couldn’t imagine how I would explain things to him.  For a moment, I wondered how Anthony would handle this person’s absence from my life.  Before I could give it another thought, Anthony commanded, “Natalie, come upstairs and see iPad Christmas Special.”  With tears in my eyes and an exhausted smile, I looked at my mom and said, “Even when my heart is breaking, Anthony is still Anthony.”  She stroked my hair and said, “You’ll be a wonderful mom some day. “  With that, I followed Anthony up the stairs and did my best to act cheery for him. 

Anthony’s “iPad Christmas Special” consists of opening credits with a cast of various, unrelated TV and movie characters set to the tune of “Hip To Be Square” by Huey Lewis and The News -- or as Anthony puts it, “Heavy Lewis and The News.”  I have seen this a million times.  First, it was the iPad Halloween Special, then the iPad Thanksgiving Special, and now it is the iPad Christmas Special.  I guess the iPad New Years Special and iPad Groundhog Day Special are next.  Just hearing the first few chords of “Hip To Be Square” makes me cringe.  For Anthony, it never gets old.  For us, it’s mind numbing.  In order to be kind, we all suffer through it.  Anthony typed up the whole thing himself using an iPad app, and added the music.  He is very proud of it.  I did my best to hide my heartbreak and cheer for Anthony as I always did.  As I faked my smile, it occurred to me that absolutely nothing happens in my life without autism being a part of it.  

I live in two worlds – the real world of obligations, deadlines, and expectations, and the time suspended world I share with Anthony.  On one hand, Anthony’s world can be a distraction from pain.  I must subdue my misery so I can appease Anthony.   Placating my brother with games and movies allows me to escape my frustrations.  The down side is internalizing everything just to cope.  When I try to share my feelings at home, I must deal with the jarring effects of Anthony’s multiple interruptions.  Anthony’s needs are always “now” even though the past and present exist simultaneously for him.  He can’t fathom what I am going through, so he’ll make the same demands on my time regardless of what I am suffering.  This is a constant reminder that I can’t lament too long.  Anthony’s persistence won’t let me.  I have to keep moving forward because Anthony needs me no matter what I am doing, or how I am feeling.  Reality compelled me to throw myself into my portfolio work, and just keep going.  I may mourn, but my work is still there. 

By Natalie Palumbo

... People that cry over inspirational videos that show no concern in real life.  I am 18, a senior in high school, and the younger sibling of a 21 year old brother with low verbal autism.

First, the good news…   

My school district honored me on the last day of summer vacation for my entry for the National Career Development Poster Contest.  My visual arts in media poster placed first in state, and third place nationally in spring of 2012.  I was surprised to find out I was also being recognized for my senior project work (done in junior year), which led to my becoming a contributing editor for Age of Autism.  My subject for senior project was “Autism in Society:  Media Portrayal Versus Reality”.  District recognition was a very joyous moment for my family. 

Shortly after that, my school district informed me I was selected as student of the month for my accomplishments.  Typically, they send out a press release across the district, but they felt this accomplishment was important enough to notify the local media.  I was thrilled!  On Friday, October 19, I was interviewed by Jennifer Wirtzberger, a reporter for WLTX 19 in Columbia, SC.  We spent about 2 hours together for the interview, as well as trying to get Anthony to overcome his reluctance and interact with me.  The big camera made him shy.  At 7 PM that evening, our story aired.   

Jennifer’s interpretation was beautiful and heartfelt, and showcased what my family and I struggle with every single day.  I am grateful for the support from my school district, close friends, and everyone who encouraged me throughout my life.   I am profoundly touched, and I thank everyone who was there to support me.  

This morning, October 20, I came across an article written by Dan Olmsted.  The line that shocked me the most stated that, “The morning shows were agog Friday over the duet between Katy Perry and a tween girl with autism, to be broadcast on tomorrow’s “Night of Too Many Stars” benefit on Comedy Central.  On the Today show, Al Roker said he teared up, and trotted out the old “it must be my allergies” joke as a way of calling even more attention to it.”

I watched the video in which Jodi DiPiazza performs a duet with Katy Perry, and my emotions were extremely mixed.  I was so happy to see that Jodi emerged from the depths of autism with such amazing skills in music, and could perform in a professional manner in front of such a vast audience.  I can only imagine her family’s joy.  However, this video did not make me cry.  I was overcome with dread.  My concern watching it was that more people I know would focus on Katy Perry’s contribution than the young girl emerging from autism.  As a sibling, this just seems like another video that will inspire tears from the same people that show no compassion for individuals like my brother. 

Case in point…

She's not my daughter, but I will brag about our newest Contributing Editor, Natalie Palumbo. Not only does she write for us while attending high school, and create beautiful art, she has published a book! Ant and Nat and the Snow Dance is available in the following outlets:

It was almost Anthony's 9th birthday, and snow was coming. His sister, Natalie, taught him the snow dance. After that, Anthony got a very special birthday present.

 

Createspace:

Amazon:

DeviantArt:

First Wish Books Page:

By Natalie Palumbo

One of my mother’s friends sent me an article from the Washington Post entitled “Autism Can Have Large Effects, Good And Bad, On A Disabled Child’s Siblings” written by Ranit Mishori.  I am 18, a senior in high school, and the younger sibling of a 21 year old brother with low verbal autism.  In the article, Ranit Mishori shares her life experiences growing up with a younger brother with autism.  Mishori ‘s recollections are mostly negative, and she is now a family physician and faculty member in the Department of Family Medicine at Georgetown University School of Medicine.  I was struck by her acknowledgement that children are more intensely affected when their siblings have more severe autism.  What spoke to me the most was her statement that, “Normal sibling rivalry doesn’t work, because it can never be a fair fight.”  This is a fact that isn’t usually stated, and a truth I live with everyday.  Even with my parent’s help, it is a constant struggle to maintain my emotions.  I am still learning to think clearly so I can manage the autism and relate to my brother in all situations. 

In the article, Mishori defined the challenges growing up alongside severe autism.  I was stunned to see someone articulate the problems we face every day.  For most of my life, autism was defined as hyper-verbal, socially quirky, genius level academic skills, or someone exceptionally talented in art or music.  This perception was so common, friends of mine saying they ‘knew people with autism’ were shocked to see my brother’s low communication, echolalia, and OCD.  However, unlike Mishori, I have many happy memories to reflect on along with the hardships.  I couldn’t help but compare my circumstances as I read her words. 

Mishori talked about “missing out on typical family outings, such as movies, restaurants and vacations”.  Our mobility as a family has dwindled because of Anthony’s severe echolalia which is very loud, constant, and uncontrollable.  It is easier to stay home than deal with the outside world.  Not everyone has been patient with Anthony.  The stress of trying to keep Anthony’s vocalizations down in order to avoid disturbing anyone outweighs any enjoyment.  Loud places work best.  My favorite family memories are amusement parks, especially Hershey Park in Hershey, Pennsylvania.  Anthony loves thrill rides.  The bigger and scarier, the better.  My mother taught Anthony to wait in line by forcibly holding him in place for an entire summer when he was 9.  She used words they used at school over and over again like “wait your turn” and “stay in line” until Anthony got it.  We wait in line to ride like any other family, so it feels normal.  It’s also noisy, so we feel more invisible.  From far away, no one can tell Anthony is echoing.  We have to watch him every second to keep him safe in a crowd.  However, the fun outweighs the stress.  Knowing there is someplace to relax and connect with my brother makes me feel good. 

Mishori spoke about “being embarrassed to bring friends home”.  While I was never embarrassed about Anthony, I was wary of letting people into my life.  I don’t know how people are going to react to my brother’s autism.   Will they be tolerant?  Will they be judgmental?  Is their perception of autism different from how my brother presents?  I am always afraid that I will let someone into my life that on the surface seems understanding, but will mistreat my brother when my back is turned.  This fear can be so consuming, that it’s preferable to avoid acquaintances and just be alone.  There are only a handful of people I trust will be understanding of my brother and me. 

By Natalie Palumbo

Early in the summer, I received a letter notifying me that my school district was honoring me for ‘My Career Dreams’ poster during the June district meeting.  My entry for the National Career Development Poster Contest had placed first in state, and third place nationally.  The June meeting date, as well as the July date, fell during my Precollege session at Ringling College of Art and Design.  Thankfully, the district rescheduled me for August on the last day of summer vacation.

I spent that day organizing my supplies for the first day of school, and finally getting my learner’s permit.  This is my senior year.  My older brother Anthony has low verbal autism, and aged out of special education services June 2012, and is now home full time with my mom.  Anthony is prone to very loud echolalia which he can’t control.  Family events requiring a respectful silence are handled by one parent staying home with Anthony, and the other parent attending the event.  My father’s work schedule had interfered with many of my art recognitions over the years.  My mother did not want him to miss another opportunity, so my dad accompanied me and my mother stayed home with Anthony.

When my father and I arrived at the district auditorium, we were told that I was also being recognized for my senior project work, which led to my becoming a contributing editor for Age of Autism.  This came as a complete surprise.  We were prepared for my art acknowledgment, but had no idea there would be any recognition for Age of Autism.  My father was very proud they wanted to extend dual recognition.  However, it was emotionally bittersweet to have one child being recognized for accomplishments inspired by the other more vulnerable one.  We both couldn’t help but wonder what Anthony’s accomplishments might have been if autism hadn’t come to call.  Even our happy moments have a little pain underneath.

In attendance was Melissa Rawl, principal of Lexington High School, and Ken Lake, the principal of Lexington Technology Center.  The Board of Trustees welcomed everyone, and said the meeting would be brief because the school year was starting the next day.  They handed out a newsletter entitled “Proof Positive” which honors students and teachers receiving state, national, and international awards.  I was categorized under “Visual Arts Awards”.

By Natalie Palumbo

Recently, I spent nearly four hours discussing autism with someone functioning at the high end of the spectrum.  This person could not grasp how my older brother Anthony, 21, could have “low verbal” autism with no conversational skills.  I am 18, a rising senior in high school, and Anthony’s only sibling.  While this person’s verbal skills seemed impressive, I could not make myself understood.   To this individual, merely being verbal implied conversational skills.  I did my best to explain Anthony’s limited ability to formulate spontaneous speech citing many examples, but I could not sway their opinion.  This was a sobering experience that left me in tears.  Many times in my life, I had been asked to explain my brother’s condition, usually with scrutiny.  This lack of understanding makes me afraid for Anthony, and the societal expectations placed upon him. 

I was asked to respond to a news article from the Washington Post dated March 13, 2011: In VA. Assault Case, Anxious Parents Recognize 'Dark Side of Autism' by Theresa Vargas.   In this article, Reginald “Neli” Latson, 19 with Asperger’s syndrome, was found guilty of assaulting a law enforcement officer, and it was recommended that he spend 10 ½ years in jail.  This article described the concerns of parents who have aging children with autism, and described the aggressive tendencies many families suffer through.  Parents were fearful that their adult children with autism would fall victim to a justice system that they do not fully comprehend. 

The article described an unfortunate scenario where some elementary school children saw Latson waiting alone outside a public library, which was closed.  They thought he looked suspicious and might have a gun, and alerted a crossing guard.  The school went into lockdown, and School Resource Officer Deputy Thomas Calverley approached Latson.  There was no gun, and the children later reported they never saw one.   Calverley testified that Latson refused to give his name several times, and became aggressive when the deputy grabbed him and said he was under arrest.  Calverley bent Latson over the hood of a car, and the two began wrestling and fell to the ground.  During the struggle, Latson flipped Calverley hard on his back hitting his head on the pavement.  According to reports, Latson hit the deputy several times, took his pepper spray, and shattered his ankle.  Latson's attorneys offered an insanity defense stating that Latson was diagnosed with explosive disorder, and attention deficit hyperactivity disorder, and could not control his behavior because of an "irresistible impulse."  The jury found Latson guilty of four charges including assault of a law enforcement officer, and wounding in the commission of a felony.  According the official blog for Autism Speaks, the judge accepted the plan proposed by the defense for hospitalization at a Virginia psychiatric facility for several months followed by intensive services at the residential school.   The jury’s sentence of more than 10 years was set aside in favor of an imposed two year period of incarceration, with the remaining eight years “suspended.”   That meant that the remaining 8 years could be imposed if Neli did not cooperate with the terms of his probation.   

Reading this story made me horrified to think that people with autism could be locked away for as much as 10 years and may or may not understand what they had done.  As more people with autism are aging into adulthood, this scenario will become more common.  With autism numbers rising, law enforcement needs to be knowledgeable about the spectrum of autism, sensory and communication challenges, and not be so quick to arrest someone that resists giving their name.  Law enforcement officers need to identify a person with autism more readily, and approach the situation more delicately.  Many people with autism suffer sensory issues, and would resist being grabbed.  My brother Anthony is mild mannered and not especially aggressive, but I could imagine him fighting to escape an officer if suddenly grabbed.  While Anthony has a young child’s view of what a police officer does, he does not understand the concept of being arrested, and the consequences of resisting.  Even if not normally aggressive, a person with autism could become agitated and physical in an overwhelming situation.  While simply trying to escape something unpleasant, they might be perceived as resisting arrest.   

By Natalie Palumbo

I am 18 years old, and a rising senior in high school.  I am the younger sister of a 21 year old brother with low verbal autism.  Anthony just aged out of special education in June, and is now home full-time with my mother.  I just spent a wonderful four weeks away attending precollege at the Ringling College of Art and Design.  I want to make visual effects and animation my career and Ringling is my first choice for college.  This experience meant the world to me and helped me prepare for my future, which includes caring for Anthony in our later years as brother and sister. 

As with every experience in my life, Anthony’s autism is never far from my mind.  During my free time at precollege, I stumbled across an article in which the rap artist ‘50 Cent’ used the term “autistic” to insult a follower of his on Twitter.  To add to the degradation, he posted, “I don't want no special ed kids on my time line follow some body else.”  Shortly after that, there was an MSNBC report on the theatre shootings in Aurora, Colorado at the midnight showing of Batman.  Joe Scarborough of MSNBC, while discussing the young suburban gunman, stated that, "these people  are somewhere, I believe, on the autism scale."  Reading these statements made me cringe to think that these influential people reach a large audience, and used their status to further this kind of ignorant chatter.  Even though both men publicly apologized, the damage was already done. 

I have noticed a trend among younger entertainers to use the term “autistic” as the new R-word.  As it  has become socially unfashionable to use the term “retarded” as a negative descriptive, the term “autistic” seems to be taking its place.  I have heard internet personalities refer to someone as “autistic” when they want to insult their intelligence or mock their behavior.  I live in a world where it is close to impossible to get proper help for my brother, and now his condition is being trivialized to being nothing more than a term used to insult.  I fear the word autism will become as meaningless as current slang.  With the epidemic growing, this is especially troubling to think no one will take it seriously.  I face a lifetime of being a caregiver for my brother and therefore social attitudes and trends affect my life. 

Celebrities have more impact than ever with the 24 hour power of the internet and social media.  The trivialization of autism is impacting my generation.  I have noticed it in the terminology of my peers.  Shocking, thoughtless, and insensitive comments about special needs are masquerading as edgy and bold.  I hear commentary that imitates trendy social attitudes, and it feels fake, harsh and irresponsible to me.  Witnessing this trend makes me feel isolated.  Twice at precollege, I was faced with the choice of holding in my feelings when I heard thoughtless chatter or expressing my concerns and risk ridicule.  Both instances occurred during mealtimes when precollege students were expected to bond and socialize. 

By Natalie Palumbo

I am 18, a rising High School senior, and the younger sister of a 21 year old brother with low verbal autism.  I am under a tremendous deadline.  I am attending an out of state summer pre-college program at Ringling College of Art & Design, and must complete several AP summer art projects for my high school before I leave.  Anthony interrupts me every few minutes to show me the cat, the same movie he watches every day, and to play video games with him.  I don’t have time to stop, and Anthony does not understand.  I struggle to stay calm and give Anthony a little time while I keep on schedule and hope to meet my deadline. 

 I just saw the story about Jake Brasch and his mother Dawn from the Twin Cities Pioneer Press.  In the video with the article Jake was speaking about the challenges of living with autism and his mother shared her perspective on coping while also being supportive. 

Jake’s story gave me bittersweet emotions – first, the sweet.  It was nice to hear feelings articulated so clearly.  Most often, the autism coverage I’ve seen is overwhelmed with conflicting data, references to “early diagnosis”, latest thoughts on treatments, and debates over possible causes.  Basically, articles that talk about autism while telling us nothing substantial. It was refreshing to hear from people who live in the real world of autism, and can speak to it.  Hearing Jake, I could almost channel what Anthony must be thinking and unable to say – his feelings being over-stimulated, his senses painfully heightened, and everyday being new and unfamiliar.  It certainly explains Anthony’s repetitive behavior, which for us is maddening, and for him it seems endlessly fresh.  He can enjoy the same things over and over again for years and never tire of them.  He will constantly listen to songs and movies of the moment, and obsess over certain video games.  Anthony’s OCD allows him to expand his knowledge of something, learn new techniques, find glitches, and discover hidden loopholes because his interest never fatigues.  Endless repetition without exhausting his interest allows Anthony to totally connect and learn.  We just have to cope with the endlessly endless repetition. 

By Natalie Palumbo

My older brother Anthony is a senior this year.  In our world, this means he's 21 years old, and aging out of the moderately functioning self contained special education classroom at Lexington High School.  Anthony has low-verbal autism.  I'm 18 years old, and just completed my junior year of high school.  I'm Anthony's little "big" sister, and now a rising 12th grader.

As the end of the school year approached, my overwhelming feeling was dread.  It felt like a dead end for us as a family. Graduation meant my brother would be home fulltime and my mother would have to manage him without any breaks. The school setting gave Anthony a world connection and the rest of us leeway to maneuver obligations without managing autism.

It was nice to see Anthony dressed in his cap and gown. In many ways though, it felt less like a ceremony and more like a forced exit. For my brother, time is not a passing concept nor something to be measured; it is a place. I am forever baby sister.  In his mind, places we’ve lived are still ours and everything is static.  Nothing changes. Even though Anthony pleaded to stay home every day this year, he does not understand school for him has ended.  He thinks he has graduated from his class and will now go to “art class with Natalie” where he thinks I spend my entire day. 

I couldn’t really think straight at Anthony’s graduation. For everyone else, graduation is a victory and an opportunity to advance in the world. For us, it felt like an abrupt end to a way of life. I was comforted by the love and enthusiasm that surrounded Anthony by the many teachers and administrators.  For many students, these staff members are to be revered and feared.  For us, they are playful adults that nurture and protect our vulnerable family member. It was hard choking back tears. The ceremony was dignified and thoughtfully planned for the students. Anthony’s graduation ceremony was in the school’s performing arts center.  It was so much more peaceful and intimate than trying to manage autism in a large arena filled with the entire graduating class. We were more relaxed knowing that my brother would not be subject to intolerance and misunderstanding. Even though it was lovely, I couldn’t help but wish for more for my brother. I imagined my life if everything had been typical.  I wished he could communicate with me like other kids. I wished Anthony could give me advice and vow to protect me. I felt sad that there were no opportunities left for Anthony except what we must invent for him.  All guidance ends now.   

I anticipate my parent’s lives being even more restricted now. My brother will need fulltime supervision since he will not go to school anymore. I anticipate my mobility will be restricted as well. I will need to stay with my brother when my parents are unable. I will definitely miss having Anthony at school with me.  I will miss seeing him in the hallways, and volunteering as his buddy on school trips with his class. We’ve been going to school together since I was three.  I’m not sure how I will cope with my loneliness, but I am relieved to know my brother will be home safe from intolerant strangers and insensitive students. 

I could not get excited about other people’s graduation and college plans wholeheartedly. I kept my heartache to myself. It was nice to hear their plans, but it upset me to know my brother’s life was not headed in the same direction as my peers. I haven’t shared this with anyone because I don’t want them to take my upset the wrong way. Some of my peers might read my sadness as a lack of support for their accomplishments. Honestly, I hate that my brother is not going to be in school with me anymore. Everyday life has just become more difficult to handle and work around. 

By Natalie Palumbo

As a younger sibling of a 21 year old young man with autism, I was recently asked to give my perspective on a story about services for people with autism beyond high school in Vermont, as shown in this story from April 27, 2012.

First of all, I think it’s wonderful that programs are being developed beyond high school to further train and improve quality of life. But, my family lives in South Carolina and I can tell you that unless more states adopt this philosophy, the rest of the country remains at a standstill. People with low and non-verbal autism, like my brother, will age out of high school without any services available to them. In addition, the increased occurrence of autism will place an exceptional burden on those states with services as more and more families seeking support move where they can access them.

It bothered me that in the article, the increase in autism is mentioned with no concern. The writers at the Brattleboro (VT) Reformer talked about the expectation that services will increase along with the numbers, but there are no guarantees. 

I would have liked to know more about Ben Davis and his mother, Lora Barrows, who were talked about in the article.  It seemed that the piece was too brief for me to make a personal connection. I wanted to identify with their story, but I didn’t get enough information to relate my life to their experience.

I was struck by the inference that an autism diagnosis brought relief. “Before Lora Barrows' son received his diagnosis of autism spectrum disorder, the family's life was filled with confusion, frustration and uncertainty.”

My brother was diagnosed with "severe communicative disorder with autistic tendencies" at age three and officially given an autism diagnosis at age five.  When my mother first heard the word “autism,” only three references came to mind, the Who’s Rock Opera “Tommy,” the little boy Tommy from St. Elsewhere, and Rain Man. My brother Anthony didn’t resemble any of these characters. I witnessed doctors being blasé about their lack of knowledge, some weren’t interested in helping, and only an exceptional few let my parents bring them research. We never felt like we had any real understanding of what the future held. 

We’re happy to announce a really terrific addition to the list of contributing editors on Age of Autism.  Joining us is Natalie Palumbo, 17, from Lexington SC, the sister of a 21 year old young man, Anthony, who has autism.  Natalie was recently interviewed about her life with Anthony for Age of Autism.  She is a tremendous advocate for her brother and acknowledged the responsibility she's chosen to embrace when she and her brother are adults.  This is an increasingly important perspective for us to highlight at Age of Autism.  Natalie is the face of the future when countless thousands of siblings will have to be there for family members who can’t speak for themselves. Please welcome Natalie! -- Dan Olmsted