2014

Walking Across America for Autism

Would you believe it if your grandparents promised to walk across America to bring awareness to autism?

For Jackson, Elijah, Quinn, Grace, Nola, Addie and even baby Max, thinking Mema and Pappy were going to walk all that way — 2437.7 miles to be exact — seemed crazy. But it’s true!

Dan and Mary Beth Reardon, fondly known as Mema and Pappy, are taking off on a great adventure to meet families, therapists, doctors, teachers, mentors, and, most importantly, the individuals who experience autism in all its forms everyday.

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Their goal is to document their journey — backed by the idea that “you don’t know someone until you walk a mile in their shoes” — and share it with the rest of the “typical” population that needs to understand the growing and changing needs of the autism community so that they can be positive changemakers not just for people with autism, but with people with autism.

Their secondary goal is to promote inclusion programs, such as Athletes 4 Autism, by raising $50,000 along the way. These funds will be used to open up more free, seasonal sports clinics across the United States. How awesome!

You have to check this out for yourself. See the video and share their fundraising page here: www.gofundme.org/thewalk

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Just Like Your Favorite Song

The magical moments we have with our Lil become just like your favorite song: you can’t help but play on repeat. They become a precious gift we can share with Lilly’s ever growing team of family and friends, enthusiastically living through every victory.

If you are present (and, most of all, patient), the intrinsic rewards of these moments — these seemingly impossible achievements — are the best gift to watch unfold and bloom. By presuming competence and providing opportunities, our girl is shining brighter than ever.

Our dear and beloved friends — two of the sweetest and selfless teenage girls around — let Scarlett borrow the coolest, brightest hot pink nail polish around. She couldn’t have felt cooler as she clinched the bottle so tightly on our drive home.

photo 1After a Daddy-Daughter bonding nail party, Scarlett proudly displayed her glowing toes for us all to see. Hours later, completely out of the blue, Lilly spoke the most beautiful sentence we have ever heard.

“I want on my toes color.”

Lilly’s autism may create a delay in time — a pause button, per say. The pause button holds for minutes, hours, days, months or even years. But the truth is that the pause button is not permanent.

Our Autism Angel is present, aware, listening. I noticed her staring at Scarlett’s toes all day, but it still blew my mind hearing that specific desire flow out of her mouth.

photo 2Cue nail polish party: part two. The happy hands, dimple bearing grin and ear covering humming ensued, and we cheered with delight right along. When nighttime came, I pressed her weighted blanket over her in bed, she leaned over and presented her hands, dainty as can be.

“Paint the hands.”

Every part of my heart wanted to jump out of her bed and give in, but my head knew better… “Tomorrow, sweetheart.”

Fast forward to this morning… My angel runs out of bed, climbs up with me and proudly states,

“Paint my hands.”

Yes, the pause button is short this morning. Will it lengthen again – of course. The point is to join her in her mysterious and magical world of autism.

And isn’t it a refreshing thought for us to all use that pause button from time to time?

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A Most Precious Word

As a mother, you long for the day your baby can utter those three beautiful words: “I love you.”

It makes the sleepless nights and endless diaper changes seem like distant memories to most typical-raising mothers.

My path is different — changing and twisting — the end not always imaginable or clear. Lilly’s autism diagnosis led me and my husband on a journey of shifting visions and expectations that had been ingrained in our heads from the moment that ultrasound technician wrote “baby girl!”

The good, the bad, the ugly; it all shifts. I was a hands-on auntie and remember so vividly hearing my precious nephew call out for my sister when I babysat him. I would rub my belly gently, anticipating the day my baby girl would call out to me just the same.

But as unexpected as a scattered, quick-moving rain storm on a clear day, I had never imagined or prepared myself that this might not happen. And it didn’t. As a baby, and then a toddler in her crib, not even in pain or distress… Forget the happy babbling and beginning sounds of “Mama, Dadda” echoing from the bedside monitor… I just wanted that feeling of my Lilly being able to call out to her Mommy in time of need. But it never came.

When Lilly started therapy, her team took a close-up picture of me to include in her lessons. Every day, they would show her a picture of me until she could finally say “Mommy” by identifying my photo.

It may seem unnatural, but this is our world. We need to teach her in a way that she can understand. I still have that first picture and it still makes me tear up when I find her playing with it.

photo (2)Two years ago, my wonderful and caring husband made me a “Happy A Mommy’s Day” card. For about a year, Lilly called me “a mommy.” To her, I was a mommy; it makes sense. I should have been grateful, but every piece of my heart wanted her to know that I was HER mommy…

Today, I hear her soft, angelic voice say my name multiple times a day and it is the sweetest song to my ears. She has her share of pain — from GI problems to seizures — and I am forever grateful to the countless hours and years spent by her therapists teaching her the tools to begin to communicate her needs and pain to us.

My favorite line occurs in her midday therapy at home. She will ask her therapist to “go see Mommy.” My heart melts every time and I remind myself to tuck those warm and prideful emotions deep in my heart: to cherish and remember always.

On my ever-changing path of being a mom to the mom of an Autism Angel, I have learned to savor those moments as daily comforts: reminders to live in the present and celebrate her moments of joy and peace, triumph and accomplishment. Because they’re there, even if Lilly’s not saying them like we had always expected to hear them.

I put no agenda or pretense on holidays; waking up on Mother’s Day, I plan on reading this to myself and smiling, because, for the most part, it will be just another day in our autism house… Filled with highs and lows, smiles and tears, but I will be grateful and reminded of the long road it took for my precious babe to utter her first “Mommy.” And, for me, that will always be enough.

— Michelle Steiner, recurring contributor


happymothersdayWhen you’re doing your Mother’s Day shopping this year, consider a gift that gives back to the autism community and acknowledges that you see the challenges and successes of your loved one every day. Purchase jewelry from the “I See You” collection and 20% of your purchase goes to programming at The Autism Research Foundation.

Have stories like Michelle and Lilly? Share them with our autism community to inspire others as we inspire you. Email hello@theautismresearchfoundation.org to get the conversation started today.


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An Open Letter to Kelly Landrigan, Communications Executive

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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.

kelly3We 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.

kelly2Listening 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

theautismresearchfoundationAn Open Letter to Kelly Landrigan, Communications Executive
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A Friendly’s Song

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!

Sesame-StreetMy 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

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Recent Study Shows Children with Autism Viewed as Less Friendly by Peers

First impressions matter: whether you are looking at facial expressions, gestures, or just general appearance, people are quick to form judgments about others. Many researchers have studied nonverbal expressivity, or the human ability to express internal emotions or feelings without using verbal language. Facial expressions are a key form of nonverbal communication, especially in making a positive first impression.

flateffectA common symptom in individuals diagnosed with autism spectrum disorders (ASDs) is the inability to read facial expressions or pick up on subtle social cues, making it difficult to connect with others. Research studies examining expressivity in children with ASDs also find patterns of flat affect and bizarre facial expressivity. Flat affect refers to a lack of emotional reactivity, meaning any sort of facial animation or expressive gestures are very minimal.

While flat affect is well documented in the field of autism, a recent study conducted at the University of London examined the influence that this poor expressivity can have in terms of forming first impressions.

Published in the journal Autism, the study looked at the initial impressions that typically developing children form about other children featured in brief videos. Forty-four typically developing children watched a series of brief, silent videos. The videos featured a mix of typically developing children and children with ASDs, all of similar age. The children viewing the videos were unaware that any of the children in the videos were on the autism spectrum.

After watching, the viewers were asked to give friendship ratings of all the children in the videos. Results indicated that the children formed an impression of the video subjects with ASDs in as little as 30 seconds. Viewers rated children with ASDs lower on nearly all measures of the friendship scale in comparison to the typically developing peers. For example, viewers indicated they were less likely to want to be friends with these children, less likely to want to play with these children. Viewers also rated theses subjects as less trustworthy.

This study determined that even when exposure time is brief, impression formation is less positive towards children with ASDs. Unfortunately, the results of this study are not heartening. Children with ASDs struggle socially, and it is likely these negative first impressions are contributing this peer rejection. These findings should be considered and used to create thoughtful strategies to help remedy this problem.

Specialists should consider the importance of first impressions and focus on improving facial expressivity in individuals with ASDs at a young age. In addition, schools should make a dedicated effort to educate typically developing children about autism and associated symptoms. Educating these children and increasing awareness will hopefully encourage a more thoughtful first impression formation process.

This is one of many of The Autism Research Foundation’s goals. We provide many awareness programs in the community in hopes of improving the quality of relationships in individuals with autism. To learn more about some of these programs, click here.

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Poem: Acceptance of Autism

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

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Hopes for an Autism-Detecting Blood Test

Researchers at the JC Self Research Institute of the Greenwood Genetic Center (GGC) have reported an exciting new finding that may allow for earlier diagnosis of individuals with autism spectrum disorders (ASDs), as well as a clearer understanding of the disorder.

Their study found that individuals with ASDs showed significantly decreased metabolism of the amino acid L-tryptophan when compared to normally developing persons, as well as individuals with other neurodevelopmental disorders. Decreased metabolism suggests there is a delay in the processing of this amino acid.

L-tryptophan is an amino acid used by cells to make protein. The body cannot produce L-tryptophan, therefore it must be obtained from the diet. Common sources include chicken, tuna, and turkey. This amino acid plays a significant role in brain development and function. L-tryptophan serves as a critical precursor for several critical neurochemical reactions in the body. For example, L- trpotophan stimulates the release and production of serotonin and melatonin. Abnormalities in the production of serotonin and melatonin have been linked to behavioral and neurodevelopmental problems (Sandyk, 1992).

Researchers also measured the expression of genes known to be involved in metabolizing L-tryptophan. Patients with autism expressed some of these genes at lower levels as well.

Currently, ASD diagnosis depends upon a variety of assessments, including developmental evaluation and parental interviews. The average age of diagnosis is 4.5 years of age, yet symptoms may appear as early as 18 months. No diagnostic blood tests exist to accurately diagnose ASDs.

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Researchers at GGC are hopeful that their finding may lead to the development of an earlier blood-screening test for autism. A blood test that identifies low levels of L-tryptophan may allow doctors to identify metabolic deficits in the brain. In other words, the test would examine the gene’s expression in attempt to distinguish between children with and without ASDs.

SynapDx, a laboratory services company, is funding the study in hopes of developing and marketing the blood test. SynapDx completed a study in 2012 using an in-house developed blood test as a means of autism diagnosis. The study blindly compared 170 children with ASDs and 115 without. The blood test correctly identified the children two-thirds of the time. This trial’s success has led the company to continue conducting further studies in hopes of validating the development.

The release of a screening test could validate doctors’ clinical evaluations and diagnosis of ASDs. While a blood test may not offer sufficient evidence to diagnose ASD independently, it will certainly decrease the amount of time of needed to confirm a diagnosis. Using a clinically significant blood test in conjunction with patient evaluations will increase the validity and objective nature of a diagnosis.

An earlier diagnosis will allow for more effective and timely therapies for affected children and families. Speeding up the diagnostic process will grant families access to treatments earlier, allowing for better results. The National Institute of Health has granted additional funding to GGC’s autism research in hopes of turning this recent finding into a simple blood test for autism.

In addition, this information helps researchers to better understand a possible biochemical mechanism behind ASDs. These findings provide evidence that the disorder may be related to the metabolic pathways involving L-tryptophan. This finding allows will researchers to further focus on the exact point that the disruption is occurring.

Important discoveries such as these bring research organizations one step closer to improved ASD diagnosis and therapy. To read more about this study, click here.

Because clinical and neurobiological research is constantly advancing, staying up to speed with groundbreaking research can be extremely overwhelming for families. However, The Autism Research Foundation (TARF) believes staying informed is key to promoting awareness and a better understanding of autism. TARF hopes to assist you in keeping up with the latest research by updating this blog on a regular basis, as well as hosting the Current Trends in Autism Research Conference.

Citations:

Boccuto, Luigi, Chin-Fu Chen, Ayla Pittman, Cindy Skinner, Heather McCartney, Kelly Jones, Barry Bochner, Roger Stevenson, and Charles Schwartz. “Decreased Tryptophan Metabolism in Patients with Autism Spectrum Disorders.” Molecular Autism 16 (2013): 4-16.

Greenwood Genetic Center. Advancement Paves Way for Early Blood Test and Therapeutic OptionsGreenwood Genetics – GGC Reports Autism Discovery. 5 June 2013. Web.

Sandyk, R. “L-tryptophan in Neuropsychiatric Disorders: A Review.” International Journal of Neuroscience (1992): 127-44.

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Life Lessons from Emma and Olivia

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.

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Monkey Business

During my time as a summer camp counselor working with children on the spectrum, we took a field trip to the local zoo. I stepped away from the group to take one of the younger girls in the group to the restroom. Once we got there, this young girl noticed an older, African-American janitor cleaning outside the door. She pointed at the janitor and asked very loudly, “Why is she so dirty?”

I am not sure if my camper had never seen an African-American woman before, or if she simply forgot, but regardless it was very “au-kward” and the woman was blatantly offended.

I ushered my camper into the stall and rushed out to apologize and speak with this woman. Before she could start yelling at me about the comment, I quickly began explaining that the girl was on the autism spectrum. Since the woman was unfamiliar with autism, she claimed I was making up excuses for the girl’s lack of manners. I gave her a brief lesson on Autism 101 and explained that many children with autism often have a difficult time understanding what may or may not be socially appropriate. You can read more about this here.

Eventually, the woman softened and appreciated my explanation. My camper came out of the restroom and apologized. The situation may have been pretty “au-kward” at first, but it ended well and the woman from the zoo learned something new about autism that day.

— Lindsay Rosen

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