Autism Speaks Official Blog

This summer brought the completion of the first round of Dennis Weatherstone Pre-Doctoral Fellowships, funded by the Stavros Niarchos Foundation in memory of Sir Dennis Weatherstone, the former chair and CEO of J.P. Morgan, to encourage promising young scientists to chose autism research as their career.

 In this blog post, Meaghan Parlade, the first Weatherstone grad to complete her fellowship, reflects on her experience and the program’s importance to future autism research.

The life of a pre-doctoral student can be intense and taxing, to say the least. However, the training and experiences I have garnered during the past (dare I say it?) seven years have been invaluable in positioning me to achieve my ultimate goal: to further the scientific understanding of autism in a way that improves the lives of affected children and families. Families affected by autism are some of the most steadfast, passionate, and deeply devoted people I have ever encountered.  No doubt, they will continue to inspire my work.

Looking back at my training, one experience stands out above the rest as the most formidable in shaping my development as a clinician and scientist: The Dennis Weatherstone Predoctoral Fellowship awarded by Autism Speaks. I am honored to be the first to complete the program.

With the support of Autism Speaks and in collaboration with my graduate advisor Jana Iverson, PhD, at the University of Pittsburgh, I have been investigating the development of communication skills in infants who have an older sibling on the autism spectrum. These skills include gestures, smiles, eye contact and sounds.

In conducting this research, our hope is to identify behavioral indicators of autism at a much earlier point than is currently possible. This, we further hope, will allow earlier diagnosis and treatment and lead to improved outcomes. In addition, by studying the development of social difficulties during infancy, we hope to improve our understanding of social communication difficulties in older children on the spectrum—and, in turn, hasten the development of tailored interventions.

Fellowships such as mine are highly coveted by my classmates because the financial support allows us to focus intensely on our research instead of taking on such time-consuming jobs such as teaching and working in faculty labs. The Weatherstone Fellowship allowed me to devote the majority of the past two years to my scientific research, clinical goals, and professional development. It also allowed me to meet regularly with other Weatherstone fellows and their advisors (all of whom are leading scientists in autism research) and to participate in national autism scientific meetings—opportunities that will enable me to develop future collaborations.

Finally, I believe this experience played an instrumental role in helping me secure a predoctoral internship in clinical psychology, the final step in my training to become a child psychologist and practice independently in clinical and research positions. Starting Sept. 1st, I will begin my internship at the Mailman Center for Child Development at the University of Miami’s Miller School of Medicine—as the program’s first autism intern.

As I look forward to this new exciting step in my career, I continue to reflect on my experience as a Weatherstone fellow. I appreciate how it has helped prepare me for a career dedicated to excellence in both research endeavors and clinical work, ultimately allowing me to better serve the unique needs of children and families affected by autism.

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a recent graduate of Seton Hall University. He started the club Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events, while supporting their local autism communities.

A big part of our autism movement is surrounded by the numbers. No matter the organization, a standard that seems to be advertised is in regards to the prevalence of autism in today’s society. It seems like any brochure you open these days will tell you that….

• 1 in 110 will be diagnosed with autism.
• 1 in 70 boys will be diagnosed with autism.
• A new case is diagnosed almost every 15 minutes.

Over the past couple of months I have transitioned to focusing more on the numbers for adults with autism. The problem is we still have a great deal to decode. I have looked through countless websites to try to find a standard but it’s been very challenging. I then decided to just focus on one area which was how many individuals with autism go to college/receive a college degree.

Parents often ask me how someone with autism can prepare for college and how many individuals with autism actually attend college. The number I usually tell them is that 1 in 1040 students was the norm of how many individuals on the autism spectrum attended my alma mater, Seton Hall University (5 autistic individuals out of 5200) because that’s all I know. My hope is that the more we learn about these numbers the more we will be able to assess how much funding should be provided for adult support in the schools. We already have estimates for unemployment (autism spectrum disorder ranges anywhere from 75-98% per diagnosis on the spectrum) adults still living at home (about 80%) or adults who will be on the spectrum in the next decade (estimated around 500,000).

Do you think numbers for “Autism in College” should be addressed more? What are your thoughts on the steps needed to see this become a reality?

This is one of my Autism Speaks U related blog posts. If you would like to contact me directly about questions/comments related to this post I can be reached at kerry.magro@autismspeaks.org or through my Fan Page here.

It can be a challenge for parents to make sure your child with autism is getting the right nutrition and diet while at school. How do parents make sure their child’s is continuing the eating habits and they get the nutrition they need?

Are you looking for more tips? Check out our Community Connections!

You can also check out our LIVE Chat with Gary Mayerson and our Family Services ‘Back to School‘ themed Office Hours!

Family Services offers a School Community Tool Kit that assists members of the school community in understanding and supporting students with autism. You can download it for free!

Suzanne and Bob Wright at the Don Allen Ford Event

On Saturday, August 20, 2011 nearly 1000 people turned out at Jetties Beach for the fifth annual Nantucket Walk Now for Autism Speaks. The walkers raised over $330,000 in support of Autism Speaks’ initiatives.

John Shea, creative director of the Theatre Work Shop of Nantucket and Walk day emcee, welcomed walkers to the fifth annual event. The Walk day festivities kicked off with a wonderful musical performance from the Nantucket Dreamland Foundation Campers and Olivia Esposito who sang songs, and remarks were given by Paul Borneman, a parent and first time Walk participant, and Melissa Murphy, Representative of Nantucket School Committee. Massachusetts State Representative Tim Madden (D-Barnstable, Dukes and Nantucket District) addressed the crowd and introduced Rep. William Keating (US Rep 10^th Congressional District, Mass.). The Theatre Workshop of Nantucket performed one song from The Fantasticks and encouraged the crowd to attend a free performance for those with disabilities on August 24.

Autism Speaks Co-founders Suzanne and Bob Wright took to the stage, where they spoke about the importance of continued awareness and the crucial Combating Autism Reauthorization Act which will sunset on September 30, 2011 without sufficient support. Over the past week leading up to the Walk, the Wrights have spoken to Plum TV and the Nantucket Inquirer and Mirror (Inky) about their organization and their particular role as grandparents of a child with autism. Read the Inky story on grandparents. Read another story on autism research here.

Following the Co-founders’ remarks, Bill Tornovish, NBC’s David Gregory and his wife Beth Wilkinson, along with the Walk Committee joined the Wrights for the Walk ribbon cutting. Other special guests attending included three Autism Speaks board members: Phil Geier, James Broder and Kevin Murray. U.S. Ambassador to the United Kingdom Louis B. Sussman and Elizabeth Frawley Bagley, former U.S. Ambassador to Portugal.

The Wrights started the Nantucket Walk Now for Autism Speaks back in 2007 to raise awareness in a place they call home for part of the year. Since its inception, the Walk has raised over $1.5 million. This year the whole town stepped up to shine a spotlight on autism when over 80 restaurants and businesses helped Light it Up Blue over the past week. See pictures from the Light It Up Blue Nantucket initiative on Facebook. In addition. Don Allen Ford played host to the Autism Speaks NASCAR car #11 from Joe Gibbs Racing. Bill Tornovish welcomed the hundreds of guests at Friday evening’s fundraiser saying that this was the first annual event in support of Autism Speaks. Guests not only got to see the great puzzle piece covered car, but also checked out nearly 50 antique and amazing cars. Even the Nantucket Choppers showed up! Read a story in the Inky.

The Walk organizers would like to extend heartfelt thanks to the Chairs Suzanne and Bob Wright, and the Co-Chairs: Sydney Fee Barsanti, Stephen and Jill Karp, Maureen Orth and Susan and Bill Vareschi for their dedication to the success of the Nantucket Walk. Special thanks to Diamond Sponsors Suzanne and Bob Wright, The Cranberry Cup Nantucket, Don Allen Auto Service, Inc., Stephen and Jill Karp, Susan and Bill Vareschi and Platinum Sponsors Maureen Orth, Bob and Laura Reynolds, Wendy and Eric Schmidt, Mimi and Barry Sternlicht, and The Inquirer and Mirror.

Fundraising totals are “to-date” – teams are still raising money and the site is still accepting donations at www.walknowforautismspeaks.org/nantucket. For information, please call (646) 843-6675 or email nantucket@autismspeaks.org.

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Will My Second Baby Have Autism, Too? (The Huffington Post)
A new study in Pediatrics says the recurrence risk of autism in younger siblings is higher than previously thought. Hardly comforting to autism families who want a second or third child and not surprising to me, mom of three daughters with autism. Read more.

Police take autistic boy to hospital in handcuffs (Denver, Colo.)
Seeing her 8-year-old son in handcuffs and being escorted by Denver Police into Children’s Hospital was a sight a mother wasn’t prepared to watch.  Read more.

Mothers with infants invited to participate in autism studies (Wilton Bulletin)
Researchers at the University of Connecticut are looking for pregnant mothers and mothers with infants to participate in two research initiatives that will follow the development of infant siblings of children with autism over the first two years of life. These studies are being conducted by Deborah Fein, a UConn Board of Trustees distinguished professor of psychology and nationally recognized leader in autism research, and Anjana Bhat, an assistant professor in UConn’s Neag School of Education who studies developmental disorders in infants and children. Read more.

Slawik: Task Force Seeking to Improve Care for Children with Autism (Oakdale Patch)
Autism has quickly become a fast-growing serious developmental disability for children in the U.S. Autism now affects 1 in 110 children and 1 in 70 boys, and in Minnesota, the rate is even higher. A recent study showed that in our state, one out of every 65 8-year olds is autistic, the highest in the nation. Read more.

Autistic Maple Grove boy wins battle for treatment coverage (Star Tribune)
A 4-year-old boy from Maple Grove has won his legal battle to force the state of Minnesota to cover his family’s expenses for an intensive form of autism treatment known as Applied Behavior Analysis (ABA). Read more.

Back by popular demand: The “Got Questions?” feature of the Autism Speaks Science blog. Today’s answer comes from… 

Simon Wallace, PhD, Autism Speaks director of scientific development for Europe

I can remember starting college and how anxious I felt facing the new and challenging environment. I had to meet such a range of new people, deal with academic pressures, organise my day and get to appointments on time, manage my finances (I still struggle!) and generally look after myself. Such an upheaval tests any young person—all the more so for a young adult on the autism spectrum.

So what can help? First, remember that US and international legislation supports the right to a college education for individuals with disabilities. Educational institutions are required under the Individuals with Disabilities Education Act and the Americans with Disabilities Act to provide services for students with an autism spectrum disorder (ASD).  The college are required to make all reasonable adjustments to accommodate the needs of students on the autism spectrum and to avoid discrimination based on their disability. (See Ralph Savarese’s blog post on Oberlin’s acceptance of his son, DJ, possibly the first nonspeaking student with autism to live in a US college dorm and be accepted to such a highly selective US college.)

In addition, there are many steps that parents can take to help their son or daughter have a rewarding college experience. Transition planning is key. I encourage you to work with your child’s high-school and college advisors to draw up a transition plan that extends from before the freshman year to post-graduation. Consider such issues as the appropriateness of a college’s location, available facilities and course content. It helps to visit the college, meet with at least some of the teaching staff and tour classrooms and dorms with an eye for how well they accommodate your student’s needs.

As part of the transition plan, work closely with the college’s disability services. Of course, this requires that your son or daughter discloses his or her ASD and, if necessary, provides the necessary documentation of disability and needs. Armed with this information, the disability office can organize an assessment of need and provide learning supports. These can include both psychological and behavioral services, assistive technologies (e.g. a recording device for a lecture) and academic aids such as note-takers and extra time in exams. It is important to have assessments of need conducted early so that learning supports are in place when the student starts coursework. Then, once a year, ensure that college staff review the effectiveness of the support program.

Having a social mentor can be particularly useful. Autism Speaks’ college program–Autism Speaks U–promotes awareness and advocacy for students with ASD and may be one source of social mentoring during college. Sometimes just a friendly ear is needed, particularly at times of increased pressure (e.g. first week of college and exams).

Before the start of classes, see if you can get an advanced class schedule. Consider the timing and distance between classes—again from the point of view of the demands placed on your student.

Finally at least a year before your son or daughter graduates, begin planning an “exit strategy” in consultation with the school’s careers office and other college staff familiar with your now-adult child.

With the right planning and support, college can be a great environment for young adults on the autism spectrum. I hope your son or daughter has as much fun as I did.

Here are some additional resources:

1. The Autism Speaks’ Transition Toolkit, particularly the section on Post-Secondary Educational Opportunities.
2. The TEACCH Autism Program of the University of North Carolina-Chapel Hill.
3. Preparing Students with Autism for College, and Preparing Colleges for Students with Autism, Hurewitz and Berger (2008).
4. Supporting More Able Students on the Autism Spectrum: College and Beyond Journal of Autism and Developmental Disorders VanBergeijk, Klin and Volkmar (2008).
5. The [UK] National Autism Society’s Guidelines for Student Mentors.

Got more Questions? Please email us at gotquestions@autismspeaks.org.

With the release of the first major report of the Autism Speaks Baby Siblings Research Consortium, the world learned that the autism recurs in families at a much higher rate than previously estimated. For perspective and guidance, the national media turned to our director of research for environmental sciences, Alycia Halladay, PhD.

Autism Speaks’ Alycia Halladay, Ph.D., provides perspective on NPR’s All Things Considered. To listen to the segment, visit here.

The CBS Early Show aired, ‘Study suggests link between Autism, siblings’ that can be viewed here.

For Siblings of Autistic Kids, Risk Is Far Higher Than Thought (TIME)
Autism runs in families to a much greater degree than previously thought, according to new research that has tracked the younger siblings of children with the developmental disorder. Read more.

Chance of having more than one autistic child higher than thought (MSNBC)
Siblings of kids with autism have a higher risk of being diagnosed with the disorder than previously believed, suggests a new study. Read more.

Autism Risk for Siblings Higher Than Expected (The New York Times)
Parents who have a child with autism have about a 1 in 5 chance of having a second child with autism, a far greater risk than previously believed, new research shows. Read more.

Sometimes words that aren’t actually spoken out loud are the most powerful of all. Lou is the married father of three. His eldest daughter has autism. You can read more at blog, Lou’s Land.

A message from Lou:

Sometimes anger can really inspire you. Sometimes it is the simple ideas that are the most effective. When the two come together, it can lead to something really special. That has been the experience I have had with my “Fixing” Autism video.

I don’t think anybody would ever describe me as a braggart, but this time I am not going to shy away from being proud of something I created. Probably because this time it is personal. Have you ever reached your limit? On August 13^th, I had reached mine.

I had a simple plan. Share my story and back up my frustration with facts. The numbers had been driving me mad for months. While doing some research on autism statistics, I had come across a page on the Autism Speaks website entitled; “Facts about Autism” and the numbers were dizzying. The disparity in funding made me sick to my stomach. Most people of child bearing age know the basic statistic that 1 in 110 children in the US will be diagnosed with Autism Spectrum Disorder, what most people don’t know is the frustration that comes from the parents of autistic kids when they see the complete lack of equal funding for something that appears epidemic in nature, particularly to those involved.

I must have visited that page 10 times. Each time I looked at the numbers my frustration increased. As I stared at my computer screen, I felt like more people needed to understand these statistics. They were absolutely vital to the war that parents dealing with ASD are fighting every day. Those numbers are why these parents have to struggle. But while I found the numbers important and interesting, I really felt like they were dead on the page. Reading statistics is not exactly exciting. It isn’t “sexy” as the Hollywood types say. That is when the light bulb turned on.

I had to give the numbers meaning. I had to personalize them. I had to add a human element to what those statistics meant to the parents of an autistic child. To do that, I knew that I would have to make myself a little vulnerable. I had to tell our story and why I felt those numbers had to be shared. What I realized as I made my notes was that it really wasn’t MY story. It was OUR story. The autism community has a shared experience of embarrassment, shame, anger and helplessness. Often times, all of these chips stacked against us result in us being quiet and shutting down. We become discouraged and for fear of being denied yet another service we view as vital but the insurance companies see as “experimental”… we do nothing, paralyzed by fear.

Powered by a lack of sleep from staying up with Bianca most of the night, I opened up some notes I had emailed to myself and started to transfer those thoughts to index cards. I knew exactly what song I wanted to use because a few months earlier I broke down in the car when it came on the radio. It made me think about my daughter. As a man, I could certainly relate to the idea of desperately wanting to “fix” something. That feeling tends to be instinctual to us men folk when we see that something is wrong. We want to fix it. Sometimes we make it worse, other times we may just confuse the situation, but when we are really fortunate we can set things right.

That is what I hoped to do… make things right. Affect change. Change the dialogue. Make other parents that are in my situation feel like they can scream from the mountaintops about the injustice and the frustration that comes wrapped up in a red-tape bow every time you have to talk to the insurance company, or go over an IEP. I wanted to make it so that others knew that it was OK to be mad as hell that they have filled out yet ANOTHER form asking what your child’s limitations are, while seeming to care less about what they excel at. I wanted to affect a person with neuro-typical kids in such a way that when they see a child acting up in public, they glance over not with disdain but with compassion.

So I had a webcam, index cards, an MP3 and most importantly the raw, honest truth. After I edited the piece together I clicked play to review my work. I felt like I was watching it for the first time. As if I wasn’t even the one in the video… and I knew it was right. Sure there are some technical things I would like to change… but the message was dead on.

I debated just putting the video up on my Facebook page, but that was safe. I really wanted this message to be heard. I was proud, and I was still angry. I uploaded it to YouTube, told some friends about it, and shared it on the Autism Speaks Facebook page. The reaction was immediate and incredibly humbling. It gave me the motivation to promote it with a little more gusto. An old co-worker of mine believed in the message so much that she started to promote the video all over the Twitterverse. That gave me even more energy to feed off of, and before you knew it the video was being seen by important people in the autism community. Imagine my surprise when I took Bianca to therapy with the intention of telling the therapists about the video only to have them tell me that they saw and loved it before I could bring it up. I was stunned.

So I encourage my fellow parents out there in Autismland… don’t just talk to others about your experience… SCREAM it. It doesn’t have to be a video. All you need is to own the truth. It is OK. It isn’t whining if there is injustice. When insurance companies will pay for people’s allergy shots because their new girlfriend has a kitty, but not for my daughter’s speech therapy… and she CAN’T COMMUNICATE… it is OK to be mad. Let’s end the shame and the silence and start holding people accountable.

The Combating Autism Reauthorization Act (CARA) of 2011 would reauthorize the landmark Combating Autism Act of 2006, securing the federal response to the national and public health emergency posed by autism spectrum disorders.

For more information on autism legislation and advocacy, please visit Autism Votes.

Autistic kids invited to special Broadway show (New York, N.Y.)
Families of autistic children have a new place to engage their sons and daughters — Broadway. Read more.

UConn Continues Search for Mothers of Infants to Participate in Autism Study (Mansfield-Storrs Patch)
Researchers at the University of Connecticut are looking for pregnant mothers and mothers with infants to participate in an autism study. The study will evaluate the development of infant siblings of children with autism over the first two years of life. Read more.

Autistic Maple Grove boy wins battle for treatment coverage (Star Tribune)
A 4-year-old boy from Maple Grove has won his legal battle to force the state of Minnesota to cover his family’s expenses for an intensive form of autism treatment known as Applied Behavior Analysis (ABA). Read more.

Progress slow but sure in fight against autism (Nantucket, Massachusetts)
Autism knows no boundaries. A complex neurobiological disorder that limits social interaction across a spectrum of degrees, autism-spectrum disorders are diagnosed in one in 110 children in the United States, and one in 70 boys. Labeled a national public-health crisis by the federal Centers for Disease Control and Prevention, autism rates have increased 600 percent in the past two decades, and the disorder remains largely mysterious and complicated. Read more.

Dream Comes True For Autistic Girl’s Family (Greensboro, N.C.)
It’s a dream come true for a Triad family. Tuesday, we told you how the Kassay family is trying to raise more than $7,000 needed to buy a critical device that will give 11-year-old Emily a voice. Read more.

The Rogers Cup presented by National Bank women’s WTA tennis tournament (a US Open Series Event) is used by many top players as a lead-in to the US Open in early September. Women’s and Men’s draws alter between Montreal and Toronto with 2011 being the first year that both events were held simultaneously during the same week. This year, Toronto played host to the Women’s event and Autism Speaks Canada was selected as the profile charity – only the second, non-tennis related charity to have this opportunity in the history of the event.

The Aces for Autism competition ran all week with $50 being donated to Autism Speaks Canada every time one of the players hit an ace. Stats are still being tallied but we hope to hit our goal of $20,000! Luckily, Serena Williams was on her game and hitting her serves hard all the way through the final!

The fun started on qualifying weekend August 6/7 with the Free Family Weekend sponsored by Spin Master – one of Autism Speaks Canada’s incredible corporate partners.  Spin Master provided tons of free samples and prize packs at various skills competitions. Fans had free entrance to the grounds and were treated to some impressive tennis and a plethora of on-site festivities. Activities on both days included a scavenger hunt, roving entertainment, including jugglers, face painters, unicyclists, air guitar contests – and tennis too – with target practice for all those wanting to pick up a racquet and win great prizes courtesy of Spin Master.

At the Autism Speaks Canada interactive display area on-site all week, BDO-Ad Council eye contact installation was activated, allowing visitors to see how difficult it is to communicate, and make eye contact, with children with autism. Additionally, Autism Speaks hosted a Spin Master Moon Dough play area, and ran a contest to win 1 of 20 autographed pictures of Maria Sharapova. Spin Master provided an incredible basket of toys valued at over $500 that was used to encourage fans to sign up for information on Autism Speaks and the early warning signs of autism.

The highlight of the week was Autism Speaks Canada Awareness Day on Tuesday August 9th. The monsoon-like rain that fell that morning did not dampen the spirits of the over 500 women in attendance at the Ladies Day breakfast where Suzanne Lanthier addressed the crowd about the growing national health crisis of autism.

Throughout the matinee and evening sessions, as visitors entered the grounds, they were greeted by Autism Speaks Super Heroes who handed out Autism Speaks backpacks. Video PSA’s and announcements were made throughout the day. Nina and Larry Andrade along with their 4 year old son, Luke and Grandpa Nino – one of our top walk teams from the Toronto Walk –  participated in the official coin toss before the evening centre court match-up between Serena Williams and Alona Bondarenko match on Centre Court.

“The tennis community is really a fantastic one to spread the word about autism and the issues that families face,” Suzanne Lanthier said. “From grassroots clubs across Canada to the high performing athletes, like Maria Sharapova, who have lent their names to further awareness about autism – we know that step by step, ace by ace, game by game and set by set, we will find the missing pieces of the autism puzzle.”

Sincere gratitude to Tennis Canada and the volunteers at the Rogers Cup, Spin Master and Autism Speaks Canada Board member Anton Rabie, and Maria Sharapova for their support.

More photos can be seen on our Facebook!

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