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18th Current Trends in Autism Conference

March 10-11, 2017

Boston Marriott Burlington, in Burlington, MA

A program of TARF since 1994, the Current Trends in Autism® Conference (CTIA) strives to present the most up-to-date, scientifically sound information in the field of autism research to people with autism, parents and professionals who care for individuals of all ages living with ASD. CTIA encourages and facilitates parent-to-professional relationships through panel discussions, an ongoing vendor and information room, and group dinners that accessorize two days of interactive autism learning.

Neurobiological and clinical research, as well as strategies for autism diagnosis and therapy, have advanced dramatically over the past several years. Our distinguished faculty from some of the leading autism centers and service providers, will present what is now known, how what we know can be applied to the education and care of those with autism, and what direction future research needs to take in order to advance our knowledge and understanding of autism disorders.

Visit ctiaconference.org for more information. Hope to see you there!

theautismresearchfoundation18th Current Trends in Autism Conference
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A big thank you to Dan Dugan!

The Autism Research Foundation would like to extend a big big thank you to Dan Dugan!  Thank you so much for supporting the work of The Autism Research Foundation, and thanks to those who supported Dan in his 2016 Boston Marathon run. TARF is grateful for all contributions to its effort to unravel the complexity of autism and to help those with this disorder.  Dan is the one in red!

theautismresearchfoundationA big thank you to Dan Dugan!
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The Autism Research Consortium 2016

On February 20-21, 2016, TARF hosted 21 researchers and clinicians from all over the United States and Canada.  In attendance were geneticists, immunologists, gastroenterologists, neuroanatomists, neuropathologists, pediatricians, psychiatrists, neuroscientists, and various other researchers.  General themes that were discussed were the heterogeneity of autism, the challenges of integrating the findings of all the different disciplines, and the difficulty of interpreting the flood of data that autism research faces.

theautismresearchfoundationThe Autism Research Consortium 2016
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Appreciating Autism Can Change Your Life

Autism changed my life.

Not because I have autism (I don’t), but because my outlook on my own life changed when I chose to pay attention to the autism community around me.

Awareness of your own life is a choice.

Awareness of autism is a choice.

There is so much to learn from this growing community, like how people with autism and their families celebrate life daily:

  • Trying new foods
  • Learning new words
  • Making genuine eye contact with people
  • Initiating social activities, like playing a game or eating a meal with company
  • Working at a meaningful job
  • Hugging or high-fiving friends

These may seem like everyday occurrences to you, but when was the last time you stepped back to appreciate the “little things” that make life your so big and beautiful?

You should know that what the typical population calls “little things” are really “big things” to someone with autism. Autism makes socializing challenging. It makes change and newness uncomfortable. It makes learning difficult. When we live in a world that demands we socialize, change, and learn everyday, that makes life with autism pretty darn hard.

Today, and everyday, I hope you might pause and be grateful all of your “little things” a little more: thinking about how hard enjoying life can truly be for someone on the spectrum, but appreciating that they and their families can still find the time to celebrate a beautiful moment.

When you choose to acknowledge how great, often easy, and enjoyable your life is, you are choosing to acknowledge there are people who may not have it as great, easy or enjoyable at times.

It’s uncomfortable, but it’s the truth that we all can help families experiencing autism by acknowledging that we know they get the shorter end of the stick. Don’t avoid families with autism because you think you’ll make them feel bad about their lives; instead, support them by saying “I See You” and I see how different this is for you and celebrate their family’s successes wholeheartedly.

When you choose to be aware, you enjoy your life even more, and you see the opportunities you are gifted everyday to make someone else’s life that much more enjoyable, too. Remember, the little things really are the big things.

Please join in the mission of our 2 great friends, Dan and Mary Beth, as they Walk Across America for Autism Awareness.

There’s a whole lot of goodness to appreciate and celebrate out there. Will you be aware and share?

Start with sharing this post on Facebook: it might seem like a little thing to you, but it can lead to big things for someone else.

theautismresearchfoundationAppreciating Autism Can Change Your Life
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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.

danmarybeth

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

theautismresearchfoundationWalking Across America for Autism
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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?

theautismresearchfoundationJust Like Your Favorite Song
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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.


theautismresearchfoundationA Most Precious Word
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An Open Letter to Kelly Landrigan, Communications Executive

Kelly1

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

theautismresearchfoundationA Friendly’s Song
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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.

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