For Family Members

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

Hopes for an Autism-Detecting Blood Test

January 31, 2014

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.

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 Options. Greenwood 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.

Fundraising That Helps Your Autism Programs, Too!

January 28, 2014

Beads for a Cause™ designs quality, cause-conscious jewelry that represent charities that are most meaningful to you. Beads like this “I See You” design symbolize a person’s commitment to autism awareness, research, education and inclusion, while a percentage of sales goes directly toward those efforts by The Autism Research Foundation. Use this bead to fundraise for your autism programming, too!

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My button

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.

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.

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.

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