All posts tagged: autism spectrum disorders

An Open Letter to Kelly Landrigan, Communications Executive

April 17, 2014

Kelly —

You emailed us 3 years ago asking to do a journalism class writing assignment on our Athletes 4 Autism (A4A) program. We bet you never expected that you would be sitting where you are today as Communications Executive for that same charity. Time has flown… (and, at so many times, so has our sanity).

Out of pure gratitude, we want to take a minute to jog down memory lane:

You wrote your assignment and you could have been on your merry way, but you chose to stay. You connected to our mission so strongly, that you gave Athletes 4 Autism a permanent place in your busy schedule and full heart.

We went to that assignment interview expecting to get a few others to look at our grassroots effort, but your interview went beyond that. You gave A4A a tool to share its vision with that assignment and you elected to be the lens through which others see that vision full-time. That was the greatest, most selfless gift we could have ever received and we know that we do not thank you enough for it.

Throughout these 3 years, you’ve worked for us in an internship capacity. That means you work for free: filling in to help wherever is needed, which usually ends up way beyond the scope of writing a press release. You are not incentivized by a paycheck, yet you donate every free minute of your time to us. You haul carts of basketballs, sing and dance at exhibit tables to get us attention, and hug and high-five every single kid that walks through our gym doors because their day isn’t complete until they’ve said bye to you.

Like a family member, you loved us and what we stood for, you defended us against all of the naysayers who called us dumb for not monetizing the program (capitalizing on the disgusting odds that 1 in every 68 kids will now have an autism diagnosis) and giving free lessons to everyone. And then you showed up to help us do just that — to help hundreds of kids in whatever capacity was needed with the hope of raising enough donations to just cover our overhead costs — no questions asked.

You are the definition of loyalty.

You see, the thing about internships is that you are supposed to learn from us, and in so many ways, we know that you have. But, due to your modesty, we are not so sure that you understand how much you have actually taught us.

For one, you have taught us about communications: that all of it — journalism, social media, public relations, etc. — is an exchange of information facilitated by listening and replying.

Listening can be done two ways. The way we understand it: you can either listen to hear, or you can listen to reply. Outstanding journalists — and people — listen to hear. You had no intention of replying with an opinion; you came to walk in our shoes — to understand as best as you could — by first listening to what we had to say and then translating it into an approachable medium for the public so that they could hear, too.

We believe you became a true journalist in that interview moment because you heard our mission and understood its value to the core: so much so, that you begged us until we took you on as an intern. We might have thought you were crazy then, but now we know you’re just crazy in love. (Beyonce would be so proud.)

Kelly, you are one of the most major parts of our program. Instead of coming in with opinions, you came in with work ethic. You showed up, shut up, and worked. With that silence, you have become the loudest voice for the charity. You are the reason people know who we are, you are the reason people know what we do, and you are the reason people know why we do what we do. That is the beginning and end to every charity and you complete us.

Thank you, from the bottom of our hearts, for giving so much of yourself to our autism cause. It hasn’t been easy, but it has been so worth it. We know we have found a forever friend in you and we hope you know you have found a forever home at Athletes 4 Autism.

We love you!

Kevin & Courtney

A Friendly’s Song

February 5, 2014

I feel like I have au-kward moments every other day, rather than every week. This makes sense, though, considering I have two twin sisters with autism that are very vocal, charismatic, and outgoing.

Luckily, this week was extra special. I went home from college for the weekend and went to Friendly’s with my mother, father, and sisters. We went at prime time: 12 o’clock noon when the restaurant was filled with children. Since most looked to be around age 12 and under, I assumed most of those children didn’t understand autism up-close — let alone from afar — so I was already preparing myself for their curious stares when one of my sisters was guaranteed to give them something to talk about! And she did: Emma gave them a fun-filled example!

My sister Emma has been on a YouTube-kick watching this particular Sesame Street clip with lots of high-pitched singing. Emma is the queen of repetition, and decided not only to sing just as the characters do, but extremely exaggerated. It was like Sesame Street Live!’s Broadway show without costumes. Needless to say, we all got the deer-in-the-headlights stares from the kids and perfectly practiced eye rolls that we were waiting for from the parents. But, oh, how my family laughed at her on-point spontaneity! For a moment, I wished I had the courage to entertain via restaurant cabaret, too.

And you’re welcome, parents. Your children got a free show with lunch. 🙂

— Diana Alessandrini

Poem: Acceptance of Autism

February 3, 2014

Acceptance of Autism

Wanting to be free

Wanting to be me

Trying to make people see

And accept the real me

Some people think my voice is too loud

And that my mannerisms strike them as being odd

This perception of me by others keeps me feeling blue

But there are plenty of struggles in life that I must get through

I am determined to show my critics my true personality

Hoping that people move away from their narrow-minded mentalities

I want them to know that I am a bright young man

Who is willing to take on as many challenges in life as I can

— Scott Lentine, a smart, poetic, and inspiring 26-year-old man who happens to have autism

Life Lessons from Emma and Olivia

January 30, 2014

I was sitting in my English class senior year of high school wondering what I could possibly write about. College essay? What does that even mean? What do they want me to talk about, myself? Everyone told me that I had it easy because I can write about my sisters because they have autism. I figured they were right, leading me to leaving my essay to the last minute (as per usual), thinking I was going to be able to breeze right through it because of course, I had so much to write about.

As I sat down that night to write the easiest essay of my life, I suddenly began to panic. I had absolutely nothing! How could it be that I had nothing to write about? When I say nothing, I mean less than what I thought was nothing when I went to write about Lord of the Flies. And that was a bad essay.

I sat there for what felt like hours trying to figure out what the heck was going on. I played around with many ideas; maybe I just didn’t want to go to college or maybe it was the fact that my teacher was so annoying she made me want to hide under my bed every morning. I even asked my parents why I couldn’t figure this out and they told me that I just needed to think about it, that I’ve learned so much from my sisters and that there is going to be plenty to write about. It would come to me. I figured this was true, and took a couple days to think on it and took the hit on the late deductions.

Well those days went by fast and I was still thinking. I had come up with a few ideas but they all felt forced, as if I had only read the Spark Notes on the book of my own life. I went on to write my essay about what I thought was what I had learned from Emma and Olivia. It hasn’t been until recent years that I realized that I wasn’t trying to avoid college or my teacher, having nothing to write about was absolutely the case. I hadn’t learned anything from Emma and Olivia, and I never have.

I can’t remember my life without my sisters since I was only two when they were born. Everything I am comes from them. All aspects of my life surround them. I’ve never directly learned anything because there isn’t anything I do that isn’t influenced by my sisters. I eat healthy because I want to be able to keep them healthy and be around for them into late life. I major in psychology because I want my life to have its purpose in finding ways to better theirs and many others lives. I stayed forty minutes from home to go to school because I can’t be away from them for too long without feeling like I’m missing something.

I know this isn’t the case for everyone. Some people haven’t always had his or her sibling around since birth, and there are many amazing things that come with that. Maybe I would have had some serious life lesson business to talk about in my college essay if that was my case. But for me, it’s not like that. For me, I almost feel like I have a sixth sense. Like I was born with something that most others aren’t. It’s not something I can describe, but if you have a similar situation, you know exactly what I mean.

Needless to say, my college essay wasn’t exactly as deep and thoughtful as my previous words. In high school, my brain just didn’t work that way. I didn’t know then that what I felt was my lack of motivation was the pure fact that I haven’t learned from my sisters, I’ve lived through them.

Moving Forward by Looking Back

January 27, 2014

As our inclusion program Athletes 4 Autism gears up for an exciting 2014, I decided to take a look back at one of the first A4A events that I myself experienced firsthand. I will never forget the feeling of overwhelming pride I had not only for my school, but also for this organization. As you will read, the power of a smile really does go a long way.

– Kelly

Looking Back: How the Power of a Smile Transformed “Spectators” to “Athletes”

On Sunday, April 15, 2012, the basketball court in Boston University’s Case Athletic Center buzzed with excitement, as smiles danced across the faces of student-athletes and children alike. Athletes 4 Autism (A4A), the flagship inclusion program of TARF, had teamed up with Boston University to participate in a school-wide community service initiative. This Global Day of service event was designed with multiple goals in mind: to introduce families to the organization and to give Boston University athletes a chance to participate in a fun-filled charitable event. At this family-friendly day, A4A was out to prove that “life isn’t a spectator sport.”

The afternoon featured skill stations run by volunteers and athletes from various Terrier teams. Families and volunteers witnessed what some people would consider a “disabled” child succeed at what a “neurotypical” child can struggle with on a daily basis: conquering uncomfortable social situations. With the goal of bringing everyone together in friendship through sport, areas including “soccer shots” and “ fastest pitch” allowed participants to meet potential “mentors” while learning about what sports were offered through the program. Participants could play at a challenge course with members of the women’s lacrosse team, shoot some hoops with the basketball team, or even score a few goals on the nationally ranked men’s ice hockey team.

Perhaps the most rewarding part of the afternoon was witnessing student-athletes connect with the children and their families. It was easy to find volunteers striving to make sure everyone felt comfortable at the event. I watched as Sydney Godett, a member of the women’s lacrosse team, reached out to an uneasy little boy named John who was desperately clinging to his father. Unlike the rest of the happy attendees, John was not smiling. In a matter of minutes, Sydney made him feel comfortable in this strange environment by offering a warm smile and a helping hand.

Soon enough, they were facing off in the challenge course, not a shred of anxiety apparent on John’s exuberant face. Suddenly John beat Sydney to the finish line, a moment so pure and so full of joy that it brought a smile to everyone watching the race. “We were told not to be alarmed or offended if the children didn’t respond right away,” said Godett. Luckily for both Sydney and John, a lack of connection did not exist; in fact, they seemed to be quite a team.

Because A4A is open to children both on and off the autistic spectrum, there was a strong mix of families with children both on and off the spectrum, showing that children of every capability can successfully coexist when it comes to athletics. Cathy Mealey, the mother of both a child with autism (Liam) and a child without autism (Grace), was thrilled when she learned about A4A’s open event. “We make an effort to take Liam into the community as much as possible, and we try to find ways to get both him and Grace involved together.” Mealey believes that the key to Liam’s success is “all about finding the right partnerships and the right niche.” She notes that her son “has always been drawn to sports,” so this event was a perfect match for Liam.

As A4A’s Global Day of Service event came to a close, John stood at half court, asking members of the Men’s Ice Hockey team to play some basketball with him. In his eyes, these boys were not the star athletes of the Boston University community. He simply saw Wade Megan, Sean Escobedo, and Ryan Ruikka as big friends for him to play with. In one afternoon, John transformed from a “spectator” to an “athlete.” Little did he know, he was not the only one smiling now.

When People Turn into Monsters

January 23, 2014

Since I first figured out that my sisters were different, I knew that there would be times when other, typical kids wouldn’t understand. I feel extremely lucky that my parents explained to me on multiple occasions how to deal with the hurt that comes from the teasing and bullying of Emma and Olivia from their peers, even strangers.

Even though I had this ingrained in my head, it still came as a shock to me when grown adults had the audacity to say something mean, not just rude, about or to my sisters. It would hurt to the point where I would cry to my parents because I didn’t say something, and felt like I wasn’t doing the right thing for my sisters. There was one particular situation that will always stick with me for the rest of my life.

When I was in high school, I drove my neighbor Hanna* to school when I got my license. She was much younger than me, so she enjoyed being able to talk about all sorts of things before we got to school. She was just out of middle school and loved my sisters. She had been in the same middle school with them for a few years after I was. One day (I don’t remember how), we got on the topic of how I felt when Emma and Olivia were teased.

She started telling me about one day when she was in Spanish class with Ms. Torres*. Ms. Torres was one of the meanest teachers I had ever had in my entire life. She not only told people in my class personal information about my life, but also made me cry when I told her about it in privacy.

Hanna began telling me that on this day, my sisters were being wheeled in their chairs down the hallway by their aids, and were repeating something they had heard in a movie or on YouTube. Whatever the girls were repeating, it called for them to be loud. Not ones to be shy, they were yelling whatever it was that they were repeating that day. Hanna was in Ms. Torres’ class down the hall, and when Ms. Torres heard the yells, she jumped, rolled her eyes, and laughed sarcastically with the kids in the class. Hanna also mentioned that she said something along the lines of “Well, that’s annoying.”

Now, maybe some would think, “Okay, she was just trying to avoid the situation or lighten the mood,” but I knew this teacher too well to kid myself. She truly thought that it was annoying, and was not about to explain to the class what the noise was or who it was coming from, because that wasn’t who she was. She was a mean lady, and I knew she didn’t “approve” of my sisters.

Later on that day, I told my mom the story. My mom knew about the times in middle school that this teacher caused me grief, and had to speak to her on multiple occasions. She didn’t have much of a reaction – she kind of just shook it off and that was that. I was so mad! I asked her why she didn’t go down to the school and say something, or even call or email this evil lady! What kind of example is that to all of the other kids in the class?

She told me it didn’t hurt her, and people like Ms. Torres would never hurt her, because she knew that these people probably have just has much hurt in their lives as I was feeling at that moment. How were we supposed to know if she was going through a rough time in her life? How was I to know that she didn’t feel this hurt on a daily basis?

My mom did end up saying something to the guidance counselors and the principal, but didn’t make it her job to go and get angry with Ms. Torres herself. To my mom, she wasn’t worth her time. Administration handled it.

Although not at that moment, I came to realize my mom’s point. Even though I’d still like to go tell off Ms. Torres, I see now that people like her can’t hurt me. I have so much happiness in my life because of Emma and Olivia that no one’s comments or opinions can take any of it away.

* denotes name change

Spotlight on Lumosity: Potential Benefits for Individuals with Disorders such as ASD

January 21, 2014

If you’ve checked out Apple iTunes Store’s educational gaming category, chances are you’ve heard of Lumosity. Lumosity’s mobile app, downloaded more than 10 million times, is often located at the very top of this educational gaming category. With over 40 million members joining Lumosity.com, this “brain training” program is gaining national popularity.

Lumosity was founded in 2005 by a neuroscience research company based in San Francisco, California. The company created a cognitive training program consisting of roughly 40 games and exercises focusing on the areas of memory, attention, flexibility, speed of processing, and problem solving. The games, designed to be both challenging and fun, aim to improve each player’s mental abilities. Creators believe the program’s popularity can be attributed to the fact that the games appeal to learners of all ages.

Games, such as Raindrops, test individual math skills, asking the player to solve a series of math problems before the raindrops hit the ground. Other games may focus on more abstract skills, such as speed or spatial skills. For example, Penguin Pursuit involves steering a penguin through a rotating iceberg maze in a race against other hungry penguin opponents in search of food.

Lumosity’s site features findings of several completed research studies, verifying the cognitive benefits of the program. Lumosity claims their program offers mental benefits by fostering neuroplasticity. Neuroplasticity refers to the brain’s ability to physically change when faced with new challenges. This occurs because different daily tasks require the use of different neural pathways. Neural pathways will grow stronger, or be pruned away, depending on frequency of use. Lumosity provides a variety of new exercises that encourage the brain to develop and strengthen neural pathways. Each game adapts to individual developmental levels to ensure the brain stays challenged.

When first signing up for Lumosity, members are asked to note the areas they wish to improve upon (such as avoiding distractions, multitasking, or precision). The program then determines your “brain profile” and provides you with a series of puzzles and exercises focused on your individualized training targets.

These priority areas vary based on your developmental level and personal needs. This allows individuals with a potential diagnosis of a disorder, such as autism, to focus on areas they may be experiencing deficits in. Individuals, both with disorders and without, can take advantage of this game by thoughtfully identifying cognitive areas needing improvement. For example, training targets for an individual with autism may include social cognition, theory of mind, executive functions, and central coherence.

Social cognition refers to the processing of social information (encoding, storing, retrieving, and applying information to social situations). One hallmark symptom of Autism Spectrum Disorder (ASD) is impairment in these social cognitive skills (Greene, et al., 2011). For example, Johnny has high functioning autism and performs well academically, but avoids social situations. He struggles to follow and contribute appropriately during conversations with his peers. Lumosity’s research claims that program participation can improve recall and concentration. Improvements in these areas may benefit social cognitive functions in kids such as Johnny.

Theory of mind is the ability of an individual to reason about the beliefs or intentions of others. Many individuals with ASDs struggle to develop this mental state of understanding. For example, Sally, a young girl with Aspergers Syndrome, was shown a Crest Toothpaste box and asked to guess what was inside of the box. Sally guessed toothpaste. She then opened the box and saw she was incorrect. Instead of toothpaste, there was a bottle of shampoo inside the box. Next, Sally was told that her dad was going to come into the room. She was asked what her father would say was in the box. Unable to separate what was in her mind (based on her experience), Sally said that her dad would think there was a bottle of shampoo in the box. Two of Lumosity’s potential target areas include mental flexibility and thinking outside the box. Practice in these areas and increased mental flexibility may better allow individuals such as Sally to understand and attribute mental states to others.

Executive function refers to a set of mental processes involving goal directed activity. An individual’s executive function includes the ability to plan strategically, control impulses, and think abstractly. Studies investigating the brain systems of individuals with ASDs reveal executive function is affected in autism (O’Hearn, et al., 2008). For example, it is common for children with ASDs to exhibit difficulty controlling impulses. Lumosity claims that data from their program reveal “[…] It is possible to train the cognitive skills that underlie function no matter what your current level of cognitive ability.” Improvements in executive function may lead affected children to exhibit greater impulse control. To read more about this specific study conducted at Stanford University, click here.

The “brain profile” is an essential feature for this program’s success. However, in surveying new members, Lumosity does not ask specific questions regarding existing disorders. Therefore it is important that the participant is able to offer honest and objective answers in assessing personal areas of strengths and weaknesses. This may be a potential challenge for individuals with ASDs. It may also be difficult for a parent or caregiver to offer an objective evaluation. Thus, consulting a neurologist, or other clinician, may be a helpful step in helping you and your child put together an accurate “brain profile.”

There is no shortage of research on Lumosity, the largest and fastest growing database on human cognition. To learn more about the completed studies supporting the exciting claims behind this “brain training” program, visit the Lumosity homepage. This program is a fun, addictive way to keep your mind sharp. You may find yourself so glued to the penguin on your screen that you forget you’re doing “cognitive homework” at the same time. Not only that, but this may be the only workout you can get in without actually leaving your couch!

Happy “exercising!”

Citations:

Greene DJ, Colich N, Iacoboni M, Zaidel E, Bookheimer SY, & Dapretto M (2011). Atypical neural networks for social orienting in autism spectrum disorders. NeuroImage, 56 (1), 354-62 PMID: 21334443

Kesler et al (2013). Cognitive Training for Improving Executive Function in Chemotherapy-Treated Breast Cancer Survivors. Clinical Breast Cancer – 06 May 2013. http://www.clinical-breast-cancer.com/article/S1526-8209(13)00049-9/abstract

O’Hearn K, Asato M, Ordaz S, Luna B. Neurodevelopment and executive function in autism. Dev Psychopathol. 2008;5:1103–1132. doi: 10.1017/S0954579408000527.

Poem: Fall in New England

January 20, 2014

Fall in New England

Fall is such a beautiful time of year

There are plenty of sites to see here

Leaves with bright colors orange, yellow, and red

Signaling a change that the year is near the end

But fall is also a time of new beginnings

It is a time to start to learn new things

A time to look at the world in a different way

A time to learn new strategies to handle each day

Let’s take this time of change

And focus on new ways to think

Let’s give individuals with challenges a new look and rearrange

And find a common link

Fall reminds us to turn over new leaves

To think about starting new goals to achieve

I call on the world to change perceptions

And give all of us a new reception

I want to make new friends and create a new start

I like to develop new relationships with an open heart

I hope to be accepted for the person that I am

So people can understand a true autistic man

— Scott Lentine, a smart, poetic and inspiring 26-year-old man who happens to have autism.

Grandfather’s Age May Play a Role in Autism

January 17, 2014

Research findings suggest that a grandfather’s age may increase their grandchildren’s risk for developing autism. There has been an established correlation between paternal age and increased risk, yet this study — Autism Risk Across Generations: A Population-Based Study of Advancing Grandpaternal and Paternal Age– implies that the effect can accumulate if both father and grandfather wait to have children at an older age.

This study examined data from Sweden’s patient registries, dating back to 1932. Data included the ages of 37,000 children’s maternal and paternal grandparents at the time of birth. Roughly 6,000 of these children were diagnosed with autism.

Results showed that men who had fathered daughters at age 50 or older were 1.79 times more likely to have autistic grandchildren than men who had done so in their twenties. These older men who had fathered a son were also 1.67 times more likely to have an autistic grandchild than their younger counterparts.

Fathers play an important role in autism development because male reproductive cells are more prone to mutation. Reproductive cells reproduce continuously throughout a man’s life, as compared to female reproductive cells that only replicate 24 times. Every time a cell reproduces, or divides, there is a risk of something going wrong. Therefore, the increased cell reproduction associated with paternal age leads to an increased chance of cell mutation.

Although this study does find a correlation between increased risk and paternal age, it should not be interpreted as direct evidence of increased paternal age causing autism. Researchers also note the role of maternal age, as well as environmental and genetic factors in contributing to increased risk. There are many factors that should be taken into account when planning a pregnancy, including nutrition, genetic counseling, medications, environment, psychological stress, and now parental age. Findings such as these lead to increased awareness in the autism community and provide exciting ideas for future research by organizations such as The Autism Research Foundation.

To learn more about this study, read the full article.

Citations:

Frans EM, Sandin S, Reichenberg A, et al. Autism Risk Across Generations: A Population-Based Study of Advancing Grandpaternal and Paternal Age. JAMA Psychiatry. 2013;70(5):516-521. doi:10.1001/jamapsychiatry.2013.1180.

Lupkin, Sydney. “Grandfather’s Age Plays Role in Autism Development.” ABC News. ABC News Network, n.d. Web. 20 Mar. 2013.

Packing Craziness: Not So Happily Ever After

January 16, 2014

Getting ready to travel with my sisters is like preparing to go on a pilgrimage across Europe for five months. I mean how much stuff can two nineteen-year-old-girls possibly need? A lot is the answer to that question!

The main trip my family and I take is to Disney World every few years. My sisters have always loved it, and surprisingly it’s a place we’ve all grown to love and enjoy as a family. When it’s time to leave for the airport, everyone is excited and ready to go right when the car arrives to drive us to the airport.

HA-HA! No, not so. My mom INSISTS on bringing our whole entire house on trips with us. It’s like an addiction that she can’t kick. No matter how many times my dad and I plead with her not to bring three full suitcases each for Emma and Olivia, the routine stays the same. To give you a better idea, let’s break it down by item:

Clothes: Obviously a necessity for anyone. For my sisters, this means 20 outfits for a seven-day trip, equipped with yoga pants, tank top, over shirt, zip-up jacket, and socks. Over-the-top? We haven’t even gotten to the best of it yet.
Shoes: All of the shoes my sisters own come with us wherever we go. Need I say more?
Diapers: Since my sisters aren’t fully potty trained, they wear adult diapers. In a pack, I’d say there are about 20 diapers. Mind you, they usually go in the bathroom, but once in a while they’ll have an accident and need to be changed. My mom prepares fully, and brings about 10 packs of diapers with us. She’ll check about 15, and bring about five on the plane.
Food: Emma and Olivia are the pickiest eaters of all time. Emma only eats pizza and a few snack items, and Olivia eats a few more things and is able to eat at restaurants, but also likes her snacks. So what do we bring? Frozen pizza and snacks. I would say five bags of chips, Smartfood Popcorn, fruit roll ups, etc. Each. Plus a few dozen boxes of frozen pizza.

Now, my dad has developed a new system where he ships some of this stuff over in advance, which has helped out very much. We arrive, and all the food and some of the other things are already there and put in the room. What hasn’t changed and probably never will, is the mad rush right before we get in the car to drive to the airport. Clothes are being shoved in suitcases; pizzas are being thrown across the room into freezer bags; sisters are being antsy and running out the door ahead of everyone else – it’s just a mad house.

When we finally get to where we’re going, and everything is settled and unpacked, we always appreciate my mom’s over-the-top packing strategies. No matter how frustrated and crazy we feel while she’s doing it, she knows the girls and knows what they need. Their needs are so much more than ours, and sometimes we forget how much extra attention and planning that needs to go into account when traveling with them. It’s a part of our lives that mom definitely knows best. Sometimes it’s just a matter of letting her do her thing, sitting back and just putting it all in the car.

Kelly —

You are the definition of loyalty.

We love you!

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