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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.

Confused Cheerleader: A Lesson in Miscommunication

January 15, 2014

As Communications Executive of both The Autism Research Foundation (TARF) and Athletes 4 Autism (A4A), I helped coordinate A4A’s filming with the NESN sports channel last February. The filming featured Sean Escobedo, a defenseman for the BU men’s ice hockey team at the time, and his A4A buddy Derek. Although Derek was one of A4A’s first participants, this was the first time that I had met him and his mom. When we were introduced, Derek barely acknowledge me, something I had expected would happen as it is a behavior I have experienced with other children who are on the autism spectrum.

Throughout the beginning of the filming, every time Derek did something well, he would look to the hockey bench for approval and praise. As an observer, I would cheer Derek on to show my support and to prove that I was a friendly face he could count on. I loved that he was already looking for me; that quick bond is unusual for kids with autism, but we had made it! It was the greatest compliment anyone could have ever given me, until I realized that Derek was actually eagerly waiting for his mother’s approval, not mine. Talk about au-kward!

But I continued to encourage him anyways — I was so genuinely proud of the progress he was making even though I had just been reminded how insignificant I was to Derek.

Derek (left) and Sean (right) prepare to face off.

Later on during the filming, Derek’s mom was being interviewed by the NESN staff. Derek was aware of this, yet he still continued to look to the bench for approval. There I was, cheering on Derek like I was his personal fan. When Derek’s mom was able to resume her duties as head cheerleader, I noticed that Derek would still stop and wait to continue his lesson, even after his mom praised his play.

I then realized that my constant encouragement had finally stuck in Derek’s mind and now he was waiting for my approval. Turned out, I wasn’t insignificant like his initial reaction had made me feel. It was the opposite; I was significant, but just reminded so on Derek’s terms, not when I tried to pull it from him with eye contact.

Needless to say, I made a lifelong friend that afternoon and learned a lifelong lesson. Now, when Derek walks into an A4A lesson, I am proud to say that I am one of the first people he looks for and greets with a big hug. And I will always be — less obviously — waiting for it.

— Kelly Landrigan

Gaze Shifting Testing for Earlier ASD Diagnosis

January 14, 2014

As mentioned in a previous blog post, the U.S. Department of Health and Human Services now estimates roughly 1 in 50 school-aged children are diagnosed with Autism Spectrum Disorder (ASD). This estimated increase in ASD prevalence suggests that steps are being taken to improve diagnosis of the disorder. ASD is not generally diagnosed until after three years of age, yet a recent study published in the American Journal Psychiatry examined the possibility of diagnosing ASD in children as young as seven months old.

This study included fifty-seven “high-risk” infants with an older sibling diagnosed with ASD and forty “low-risk” infants with typically developing older siblings. The infants participated in the study at seven months old and returned for a clinical assessment after their second birthday. This assessment determined which of these children should be diagnosed with ASD. Knowledge of their diagnosis was then used to analyze the study’s data.

The study measured the brain activity and amount of time required for a seven month old infant to shift their gaze during a visual attention task. Researchers compared the eye movements and visual attention of infants later diagnosed with ASDs, to those of a typically developing infant of the same age.

To do so, researchers engaged infants in the Gap/Overlap Task. During the Gap Task, infants sat on their parent’s laps and watched images appear on a monitor. The first image appeared in the center of the screen, attracted the infant’s gaze, and then disappeared. A gap of time passed before a second image appeared on the edge of the screen. Advanced eye tracking equipment captured the infant’s eye movements. These measurements provided researchers with the exact timing of the shift in gaze.

The Overlap Task measured eye-movements as well, but also included a measure of brain activity. During this portion, the image remained in the center of the screen, while a second image appeared at the edge. Eye tracking equipment measured the time it took infants to shift their gaze to the peripheral image. Using functional Magnetic Resonance Imaging (fMRI), the researchers also measured the amount of processing occurring in different regions, in the infant’s brain to determine if there were patterns that distinguished the two groups.

Results showed a difference of 25 to 50 milliseconds on average between infants later diagnosed with ASD and their typically developing counterparts. Researchers believe this delay can be accounted for by differences in the developing neurological circuits of a child’s brain. During this period of early infancy, the brain’s pathways for communication are forming quickly. These pathways influence how the infant interprets and responds to the environment.

Researchers identified the splenium of the corpus callosum as one such pathway that may be related to the difference in gaze shifting. This structure is an important neural connection between the brain’s left and right hemisphere. Results revealed a correlation between large splenium size and the speed with which infants shift their gaze. The ability of an infant to rapidly switch gazes improved with increased size of the splenium in typically developing infants.

However, researchers found no similar correlation in infants later diagnosed with ASD.

Although 25 milliseconds seems brief, this delayed reaction time implies a possible overall difference in the way the infant’s brain is developing. A small delay at this early stage may hint at larger differences in cognitive and social development. Thus, this attention shifting delay may well serve as a precursor to other well-known symptoms of autism. Such symptoms including difficulty making eye contact and coordinating gaze. Research consistently suggests an association between autism and deficits in pursuit eye movement. Further gaze testing research may allow professionals the opportunity to predict the development of these symptoms as opposed for waiting for them to occur.

By detecting neurological differences through research on subtle delays at the infant stage of development, researchers hope to improve ASD diagnosis at an earlier age. Earlier diagnosis will help parents to recognize their infant’s needs and begin working to help their child reach his or her full potential. These potential diagnostic tools such as fMRI might be useful longitudinally as well to chart an individual’s progress during early intervention therapies.

To read more about this study, check out the full article.

Citations:

NIH/National Institute of Child Health and Human D. “Gaze Shifting Delay Has Potential To Diagnose Autism At 7 Months.” Medical News Today. MediLexicon, Intl., 27 Mar. 2013. Web. <http://www.medicalnewstoday.com/releases/258189.php>

Takarae, Y., Minshew, N., Luna, B., Krisky, C. & Sweeney, J. Pursuit Eye Movement Deficits in Autism. Brain: A Journal of Neurology 127, 2584–2594 (2004).

10 Reasons to Donate

January 13, 2014

Hi Friends,

Our online community has asked our staff to provide ten (10) reasons for why people should donate to The Autism Research Foundation this holiday season. Is it cliche to say that the hardest part of this challenge was narrowing down our reasons to such a short list? Well, it was!

Here is our cheat sheet for why you should consider giving a gift to a charity that gives all year-round:

The Autism Research Foundation is the first medically-accredited autism research charity in the world. Our longevity proves we have stood the test of time as a trusted authority in the field.
Dr. Margaret Bauman spearheads our research. She is the recipient of the Lifetime Achievement Award of the International Society for Autism Research among an impressive 92-page curriculum vitae. It’s single-spaced! (And you can read it here.)
We believe donations should pass through us, not to us. Whether you donate to research or a conference — or anything in between — your donation makes an immediate impact on the community we serve.
Our charity operates entirely on volunteers. Between internships and returning helpers, our community donates their time and talent repeatedly each year — even as they move onto full-time careers elsewhere. That’s a testament to our mission and its why we can keep our overhead costs so low.
We admit that we do not know it all, but we are so motivated to try! An autism diagnosis lasts a lifetime, and with it comes a lifetime of experiences that really do make the day-to-day tasks harder. We research to help you make better sense of the autism experience, and we aren’t too proud to say that there’s a long way to go, but you’ve got a friend in us and we are happy to help you along the way.
Every staff member of The Autism Research Foundation is required to spend time in an autism clinic and an autism inclusion program: speaking with the people who live with autism everyday and building relationships with the parents/caregivers who help them navigate that different life. When you speak to a TARF staff member, you can be sure that they have a closer understanding of what you’re going through first-hand.
You can make donations in tribute to someone you value — check a gift (or ten!) off your list! We will send anyone — your best friend, child’s teacher, neighbor, therapist, or the President — a card letting him/her know you were thinking of them.
We believe in a whole-person, whole-body understanding of autism: that you need to invest time in getting to know the person who happens to have autism first, before getting to know their autism characteristics.
Every year, we host The Autism Research Consortium to encourage collaborative work across all healthcare and science disciplines. We share our information with an exclusive, small, and trusted network of professionals who are genuinely committed to helping families over raising illegitimate dollars from big corporate sponsors. Truthfully, we’d rather be poor and be able to sleep at night with a free conscience.
Our doors are open to you. Anytime. We never turn families away from services for an inability to pay and we encourage supporters to walk-through our lab and learn what their donations, volunteer hours, and passion contribute to every day.

Follow The Autism Research Foundation on Facebook, Twitter, Instagram, and Pinterest to learn all of the ways our charity gives you reasons to give. Thank you for considering us!

Love,

Courtney and the TARF staff

Theory of Mind in Autism

January 10, 2014

A few months ago our staff attended The Annual Meeting of the Society for Neuroscience in Washington, DC. While there, a speaker named Diana Tamir presented her research on theory of mind in children with autism spectrum disorders (ASDs).

Tamir says, “theory of mind — the capacity to infer others’ mental states — is crucial for the development of social communication.” She showed that when reading fiction, people can experience what others are feeling beyond their own emotional state. Research done by Atsushi Senju supported her idea, demonstrating that the lack of theory of mind in children with ASDs may “relate to impairment in social interaction and communication found in ASD.” [1]

So what does this mean?

Individuals who may not have strong theory of mind (capacity to understand or predict another’s emotions or actions) may be more apt to have an autism diagnosis.

Tamir points out that reading fiction has been shown to increase a child’s theory of mind because it can draw out emotions from the reader through characters and events. Picking up a great book is an indirect way to stimulate social interaction: it can help develop larger imaginations and, over time, teach individuals how to predict social cues without immersing them in what could be an uncomfortable face-to-face situation.

Tamir’s research focused on two things: the extent to which vivid physical scenes are pictured while reading, and the mental content of the reader. Her results showed that the participants who read the most fiction demonstrated the most enhanced theory of mind. So, if reading can stimulate emotions and help improve the ability to understand another’s perspective, this is a great tool for children and adults with ASD to improve their social perception.

Just watching a narrative on television or at the movies won’t cut it: videos allow the audience to focus their attention on whatever he or she likes, but books require the audience to focus on precisely what the author is trying to convey.

Luckily for parents and educators, books are available on intermediate tools like iPads and Kindles. We don’t have to pry our kids from the stimulating TV screen; we can transition them to another media app. (Did you catch my last blog post on apps?)

While there isn’t a ton of completed research out there about reading and theory of mind, we can say this: it is important to read for any child, more than many may have ever thought before.

We will keep you updated on Tamir’s fascinating reading research as it develops. In the meantime, start turning some pages!

Not sure what books to pick up? Here are a few great links to other blogs and websites that describe books their children enjoyed reading and were a fun and exciting read.

Happy reading!

– Taylor Platt

_____________________

For Kids: http://www.beagooddad.com/237/good-books-for-children-with-autism/

For Kids:http://www.autismreads.com/2011/01/reading-for-children-with-autism-links.html

For Special Needs: http://www.bookskidslove.com/specialneeds.htm

For Adults and Young Adults: http://www.libraryjournal.com/article/CA6642883.html

Find anything at Amazon: http://tinyurl.com/6wczzdh

1. Senju A. Spontaneous Theory of Mind and Its Absence in Autism Spectrum Disorders [Internet]. The Neuroscientist: A Review Journal Bringing Neurobiology, Neurology and Psychiatry 2011 May;[cited 2011 Dec 2] Available from: http://www.ncbi.nlm.nih.gov/pubmed/21609942

2. Mar RA, Oatley K, Djikic M, Mullin J. Emotion and narrative fiction: Interactive influences before, during, and after reading. Cogn Emot 2011 Aug;25(5):818-833.[cited 2011 Dec 2 ]

3. D.I Tamir, A.B Bricker, J.P Mitchell. Reading fiction improves reading minds: The role of the default network .Program No. 430.05 2011 Neuroscience Meeting Planner. Washington, DC: Society for Neuroscience, 2011. Online.

How “Typical” Siblings Can Support Each Other

January 9, 2014

I am a sister to two amazing and wonderful twin sisters, both of whom have autism. I am their only other sibling, and our extended family is scattered. Looking back on our life together thus far, I’ve realized that I dealt with a lot of tough, emotionally draining times without anyone who fully understood what I was going through as support. My parents of course were an amazing support system on their own, but there was no one that was in my shoes that I could reach out to for advice.

I want you to know, I NEED you to know, that I was so wrong. You are NOT, and never will be, alone. There are so many other typical “sibs” out there that are feeling the way I did and it pains me because all I want to do is be able to help and tell them that I AM HERE! We all are here. I hope this post gets to as many of you as possible.

I’ve come up with some ways we can all support one another and feel a little less lost:

Get involved. This is the most important thing you can do. Everyone else won’t know you’re there unless you make the effort to join us in conversations. Resources like The Autism Research Foundation’s sibling blog is a GREAT way to find support and familiarity through posts, comments, and even events. The number one way to support one another is by being there to listen, being there to offer advice to a fellow sib during a tough time, and being there for life.
Speak up. We want to hear your stories! We may even NEED to hear your stories. It feels so good to know that you are not alone, even if it means writing the most embarrassing au-kward story on this site. All us other typical sibs appreciate your courage in sharing. It gives us the comfort of knowing that that curdling scream our sib let out at the movies last night happens to the best of us.
Create awareness. I think I can say with a pretty good amount of certainty that all of us would like autism to be a little better understood. A little fewer stares, a little less tension when navigating au-kward situations would bring the anxiety levels down a notch. Fundraise with your friends, organize an autism-related event at your school, make some informational boards at local hangouts, get involved with Best Buddies – there are endless possibilities.
Ask your friends for help. This can be daunting to do all on your own. Friends are great back up for events, fundraisers, and creating awareness. Ask them to listen if you need to have a vent session in the bathroom at Chili’s. If they can listen to your love life problems, they can listen to your sib life problems too.
Be a role model. If you see something, say something. Never let bullying go unnoticed. I speak for the entire typical sib family when I say a world without bullying of our au-tastic sibs is possible when we are there to create it. Bullying is unacceptable and sticking up for what you believe in can really make a positive impact on those around you.
Join a support group. (insert link to group sites here?). There is nothing wrong with admitting that having a sibling with autism can be mind-blowingly stressful, and sometimes we need some serious support. Being able to talk is key, while also lending an ear to those who need someone to listen to them. Support groups can be found anywhere locally with a quick Google search. Ask your doctor or even your sibling’s doctor for advice on how to find them, because he or she may have a referral.

What you can do right now is comment on this post and tell me ways that you think we can support each other. Ask questions, give advice, and offer an ear – let us know. Typical sibs, unite!

How to Navigate Au-kward Social Moments

January 8, 2014

Au-kward situations come in all shapes and sizes. They can be big or small, loud or silent, seen or unseen. Sometimes there is no predicting an au-kward moment making them more challenging than most. The most important thing to keep in mind is that these moments are unavoidable. Even typical awkward moments are impossible to avoid! What matters is your approach when dealing with combating the situation and the mindset you keep.

Consider this scenario: my sister Emma is a flinger. She flings anything she can get her hands on – the problem is we never know WHEN it’s going to happen. One day when we were much younger, we went out to lunch at a restaurant that had outdoor seating. Emma must have felt that this gave her some kind of permission to fling things, because right when she got her fries, she took one, wound up, and flung it as hard as she could over her head, backwards. All of us paused in shock not knowing where the fry landed, waiting to see the outcome. Turns out it landed smack in the middle of the salad belonging to the man sitting behind us. He turned around and we braced ourselves for the looks of disapproval and frustrated comments, but he BURST out laughing! He couldn’t contain himself –he thought it was the funniest thing that had happened to him all summer. We exchanged some laughs and short explanations and went on with our lunch.

Moral of the story: don’t sweat it. Au-kward situations happen to the best of us. For times that you need a little navigating, here are some of my tips:

Laugh it off. Sometimes if you’re the one trying to hide whatever is happening, people will automatically feel tense and irritated. If you laugh and keep it light, most likely it will roll off their shoulders.
Keep distractions handy. For those times when the au-kward situation seems never ending, YouTube on an iPad is your BEST FRIEND.
Have a short and sweet “explanation” thought out in your head. My go-to line for my sisters is usually something like, “Hi guys, sorry to interrupt, she has autism and is easily overwhelmed. This is just her way of coping.” You don’t need to get into detail, just enough to define the situation.
If someone is really irritated by what’s happening, start with your “explanation”. If that’s not enough and they’re still on your case, don’t go into attack mode (although it can VERY be tempting at times). It’s ok to come to terms with the fact that some on-lookers just won’t accept au-kward situations for what they are. At that point, that’s their problem. I like to smile, nod, and move on.

Au-kward moments make life interesting. Whoever can’t handle it must just be boring.

If you have an au-kward moment, learn how to share your personal story with us.

Children with ASD more attracted to screen-based media

January 7, 2014

It is not uncommon for parents to worry about their child/teen’s excessive fascination with technology. To be honest, the amount of time I spend glued to my computer on a weekly basis is probably a bit worrisome to anyone who walks by me in the study lounge. However, a recent study at the University of Missouri (MU) led to the conclusion that children and teens with autism spectrum disorders (ASDs) use screen-based media, such as television or video games, more often than their peers and are more likely to develop problematic video game habits.

MU researchers studied screen-based media use among 202 children and adolescents with ASDs, as well as 127 of their typically developing siblings. Those with ASDs spent more time playing exclusive video games and less time on interactive social media websites, such as Facebook or Twitter. They also spent more time watching TV and playing video games than participating in physical or social activities. The typically developing siblings spent more time engaged in non-screen activities.

A further study examined 169 adolescent boys with ASD. Findings showed a correlation between problematic video game addiction, and oppositional behaviors, such as refusing directions and engaging in arguments. This study does not imply causation; therefore results do not prove that video games are the cause of oppositional behavior. It may just be that video games provide a distraction from stresses these individuals experience.

Researchers questioned why children with ASD experience increased attraction to video games. Possible explanations include the idea that video games offer visually engaging experiences, which do not require face-to-face communication or social interaction, which can be more stressful or uncertain. Figuring out why these children are so attracted to screen-based technology may allow researchers to develop therapies that are similarly engaging. Some researchers have begun to investigate how to incorporate therapy in a virtual environment to teach skills that could translate into actual social reactions. An example of one such study is taking place at UC Davis Medical Center. By creating a virtual reality for participants, researchers are able to track gazing and eye movements, as well as create mock situations with faces appearing on the computer screen. These virtual reality methods provide participants with practice making appropriate eye contact in a more comfortable situation. For more information on the virtual reality studies at UC Davis, visit the full article.

Until further research determines a way to translate this visual attraction into a more beneficial screen-based experience, researchers at MU warn parents against allowing children with ASD to spend too much time glued to the screen. Parents should encourage their children to participate in more social or physical activities (which can be easier said than done). This article by Autism Digest offers helpful tips in considering what sport may be most appropriate for your child. The Autism Research Foundation offers several programs, such as Athletes 4 Autism andArt 4 Autism, to provide opportunities for children to get off the couch and explore their talents!

Check out the full article to learn more about this study.

Citations:

University of Missouri-Columbia. “Children and Teens With Autism More Likely to Become Preoccupied With Video Games.” ScienceDaily. 17 Apr. 2013. Web.

Virtual Reality: An Intervention for Autism. (2010). <http://www.ucdmc.ucdavis.edu/medicalcenter/features/2010-2011/09/20100916_MIND_virtual-autism.html>

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