Archive
Launching ‘Move the Needle’ – A conference to advance early detection and intervention
Posted by Autism Speaks Chief Science Officer Geri Dawson, Ph.D.
I want to share with you the excitement I felt at this week’s strategic planning meeting for our new Move the Needle Initiative. Autism Speaks brought together experts in the field of early detection and intervention for autism spectrum disorder (ASD), with representatives of federal agencies such as the U.S. Health Resources and Services Administration, the Centers for Disease Control and Prevention and the National Institutes of Health to create a national plan for lowering the age of diagnosis for ASD and improve access to high-quality early intervention services for all children with autism.
While researchers have made great progress in developing screening and diagnostic tools, the average age of diagnosis remains stubbornly close to 5 years, even higher among some ethnic minorities. Even after their children are diagnosed, many families lack access to the best early intervention therapies.
Our meeting was a great opportunity for exchanging ideas between disciplines. We heard from family members, pediatricians, policy makers, clinicians and researchers who are evaluating the best ways to put effective strategies and tools into pediatrician offices and the broader community. Representatives from all part of Autism Speaks attended to help us identify ways to harness our powers together to “Move the Needle.”
Experts from outside of autism, including one from the field of breast cancer, shared their knowledge of effective ways to improve early detection and access to services. On the first day of the meeting, we heard about the latest findings on screening, diagnosis, early interventions, access to services in underserved communities and innovative technologies that have the potential to improve access among underserved children and their families.
On day two, we split into working groups to develop solutions to the barriers that have interfered with the delivery of earlier diagnosis and treatment in our communities. This included taking the first steps toward creating a new agenda for collaboration between public and private organizations. We brainstormed ideas on how this could be done as soon as possible by building on the tremendous progress of recent years.
Though I have only begun to pull together our thoughts and ideas, I want to share a few important issues that floated to the top of the conversation:
- Family empowerment was a common theme. Studies clearly show that greater engagement and empowerment on the part of families decreases parental stress and increases satisfaction with services. Likewise, we know that children who have the best outcomes tend to be those whose parents are actively engaged in treatment. We discussed several strategies to empower families.
- We explored a concept we call task shifting, to help address service shortages in many communities. We recognize that, through training, we can tap professionals such as nurses, “birth-to-three” service providers and community volunteers to provide services such as screening and family follow up. This approach can provide families with more professionally delivered services than, say, the typical pediatrician can offer.
- We agreed that we must harness the potential of technology. Smart phones, iPads and video conferencing are all ready to be developed as tools for improving access to services – especially important for underserved populations such as children in rural areas.
- Recognizing that pediatricians play a central role in autism screening, we discussed many ideas for enhancing pediatrician awareness and skills, including their ability to connect families with the services they need.
These are just a few ideas that came out of this inspiring meeting. It provided a great start to realizing our long-term vision of creating a national agenda through private-public partnerships that focus our investments in research and services in ways that will lower the age of diagnosis and improve access to quality early interventions for all children.
Your feedback means the world to us. Please leave a comment and send us an email to ScienceChat@autismspeaks.org.
New Findings Hold Promise for Revolutionary Pre-Symptom Screening
Posted by Autism Speaks Chief Science Officer Geri Dawson, Ph.D.
I want to share my perspective on an important new research finding released today. The study is headed up by Joe Piven, at the University of North Carolina, Chapel Hill. I am a co-author. The study followed the early brain development of 92 infant siblings, 28 of whom went on to develop autism spectrum disorder (ASD). Infants were imaged using MRI at 6, 12 and 24 months. Those who later developed ASD showed abnormal development of white matter fiber tracts by 6 months. White matter is the part of the brain cell, or neuron, that connects one part of the brain to another. (See our related news item here.)
This finding tells us that, very early and before the emergence of behavioral symptoms, the neural networks that connect different brain regions are not developing normally in infant siblings who go on to develop autism. Previous studies of both children and adults have repeatedly shown that autism involves abnormal connectivity between different brain regions. In fact, my colleagues at the University of Washington and I did one of the first studies to show this.
Now we are seeing that these changes are evident by 6 months of age. Future research is needed to help us understand what is causing these early brain changes.
Why is this finding important? First, it helps us understand why people with autism have trouble with complex behaviors such as social interactions. Even simple social behaviors involve coordination of many brain systems. For instance, when something catches a baby’s interest, the normal response is a combination of gestures, babbling and eye contact. This requires several brain regions to communicate efficiently with one another.
Even more important, these results offer promise of using imaging results or other “biomarkers” to flag risk of ASD before symptoms become evident. In other conditions such as Alzheimer’s disease and Parkinson’s disease, such early biomarkers are being used to identify those at risk and allow treatment to start before symptoms appear – to maximize benefits.
We can imagine the day when noninvasive brain imaging is available for babies at high risk for autism (such as infant siblings of affected children). When the imaging reveals tell-tale abnormalities, these babies can receive medical or behavioral treatments that stimulate normal brain development. For example, a recent study by Marcel Just demonstrates that certain reading interventions for children with reading disabilities produce positive changes in the children’s brain white matter, or neural connectivity.
So, it’s reasonable to consider that some of the changes we are seeing in 6-month-old infants might likewise be improved through early intervention. Just’s study suggests that such “rewiring” may possible even later in life with interventions that support the connectivity between different brain regions.
Parents who are concerned that their baby might be at risk for autism may be wondering whether they should ask their doctor to order an MRI. The results published today are too preliminary for that. We are not recommending MRI screening for autism at this point. The best way to screen for autism at this time is to look for early behavioral signs (see Learn the Signs) and use screening tools such as the M-CHAT.
The research published today was funded in part by Autism Speaks and would not be possible without our community’s passionate and continuing support. Thank you.
Webchat on Promoting Language, Learning and Engagement in Toddlers and Preschoolers
Thanks to all who joined us for today’s “Office Hour” webchat with our Chief Science Officer, clinical psychologist Geri Dawson, PhD. Here’s the full transcript.
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How does research help my child today?
Today’s “Got Questions?” reply comes from Rebecca Fehlig, Autism Speaks national director of field and chapter development
I still remember the day in 2009 when I was sitting in the committee hearing room of our state capitol. We were waiting for the next parent to testify in favor of our Autism Insurance Reform bill—in its second year of battle here in Missouri. Many moms and dads sat in the back with me, clutching their note cards, printed testimonials and handwritten pages. Though we were all nervous, we were eager to tell our stories to the legislators whose decision could make such a huge difference in our children’s lives.
Megan was a local volunteer, autism advocate and parent of two children, one of whom (Henry) has autism. Her hands were shaking a little, but she delivered her message in a calm and confident voice. She was confident the legislators would respond to her personal testimony. Megan explained that she was in extreme debt, had declared bankruptcy and had to sell her home—all to pay for Henry’s autism behavioral treatment. But Megan was not there to complain. She wanted to share Henry’s progress and positive outcomes. Thanks to more than 20 hours a week of early behavioral intervention, Henry had uttered his first words. She told the legislators that her financial sacrifices were well worth that precious reward. But she asked that other families not have to sell their homes and declare bankruptcy for their children to receive treatment for autism. I was not the only one wiping tears at the end of her story.
But the next individual who testified opposed our Autism Insurance Bill. He represented an insurance provider, and he used the same argument that insurance lobbyists were feeding the legislators across the country. “Although we empathize with Megan’s struggle,” he said, “the simple fact is that behavioral therapy is an experimental treatment for autism.” He said it was reckless for insurance providers to pay for experimental therapies and that despite Henry’s improvement, there was no predicting whether other children would benefit.
His words produced gasps around the room. My heart sank.
But wait, this is where the story gets good. Next, Lorri Unumb, Autism Speaks vice president for state government affairs, took the stand. She too shared the progress of her son from intensive applied behavioral analysis (ABA). But it was the next part of her testimonial that every legislator in the room heard loud and clear.
Countering the insurance industry testimony head-on, Lorri stated unequivocally, “ABA is not experimental!” And she had the published research studies to back up her statement.
It didn’t matter whether the studies were done in Missouri or another state. Each study had been vetted and published by a leading scientific journal. The evidence made clear that ABA is far from experimental, and it demonstrated the importance of early intervention in producing the most successful outcomes.
The Missouri House of Representatives voted our bill out of committee that day. It went on to our governor’s desk to be signed into law—all because we had the scientific research to back up our efforts.
Never before had the importance of funding research become so clear to me!
Currently Autism Speaks is funding additional studies that can provide a firm foundation for our advocating that insurers cover additional types of behavioral therapy–such as social skills training, infant-toddler interventions and cognitive behavioral therapies focused on social and communication skills.
And that’s crucial because the downside to our story was that the Missouri bill mandated coverage for some but not all autism treatments. Many more treatment options need to be further investigated to ensure they are safe and produce tangible benefits for those who struggle with autism.
The great news is that Autism Speaks just funded $1.8 million in treatment grants that will further our understanding of the most promising new interventions—not only for children but for all those on the spectrum—from early intervention therapies in underserved communities to job interview training for adults.
We look to these studies to give us the ammunition we’ll need the next time we are sitting in front of a room full of government decision makers. And they would not be possible without your support at our Walks and other fundraisers.
When it comes to helping our children and all those with autism, scientific evidence of benefit puts us on the road to affordable access to therapy. And that means better outcomes. This is what our families deserve and our mission supports.
Autism Speaks continues to work for state-mandated medical coverage for autism interventions. To date, its advocacy efforts have helped secure autism insurance reform laws in 29 states. To learn more about Autism Speaks advocacy efforts, please visit http://www.autismvotes.org.
For more news and perspective, please visit the Autism Speaks science page.
Exciting Times in Early Diagnosis and Treatment
Posted by Brooke Ingersoll, PhD, clinical psychologist, Michigan State University, East Lansing, and the recipient of an Autism Speaks 2011 Treatment Research Grant
We now diagnose autism spectrum disorders (ASDs) between the ages of 2 and 3 years, when symptoms become obvious. But over the last five years, we’ve been actively studying how to identify ASD symptoms in younger children, with the hope that earlier intervention can produce greater improvements in outcomes.
I was recently invited to write a review of these research efforts for the scientific journal Current Directions in Psychological Science. I’m excited to relate these findings to our families and friends as well:
In essence, the evidence is strong that many children who go on to a clear diagnosis of autism are already showing fewer early social and nonverbal communication skills at 12 months than do typically developing babies. These “missing” behaviors including imitating, showing objects to others and pointing to objects or events in the room.
My review of the research also showed clear evidence that targeted therapies can improve these early skills in young children with ASD —and might also produce improvements in other, later-emerging skills such as language and more mature social interactions. Despite these advances, much remains unknown about the early presentation of ASDs and the best way to intervene to improve these children’s outcomes.
While it is wonderful to see that we can identify and help very young children, I feel strongly that we must also increase research and improve therapies for older children with ASD. My current work, recently funded by an Autism Speaks treatment research grant, is evaluating the benefits of an intervention called reciprocal imitation training, designed to increase social engagement in adolescents with ASD and limited language.
With this intervention, we encourage non-verbal social behaviors such as imitation, gestures and eye contact. The intervention is adapted from social communication therapies that have shown success with young children with ASD who have not yet learned language. The early results have been encouraging, and we are very excited to continue this work in an effort to identify appropriate social interventions for older, nonverbal individuals with ASD.
Read more news and perspective on the Autism Speaks Science page.
Floortime and a Spiritual Discovery
Ben G. of Michigan received floortime therapy through The PLAY Project Intervention for Autism, one of Autism Speaks’ first community grant recipients. His mother, Lisa, reports how his progress has led to his writing a sermon that he read at his Bar Mitzvah to his friends and family.
My husband and I have a 13-year-old son, Ben, whose symptoms appeared when he was very, very young. Ben started getting occupational therapy, physical therapy, speech therapy and sensory integrative therapy at 14 months of age, then at 30 months came under the care of Dr. Rick Solomon in 2001. Still, Ben didn’t speak. In fact, he was a mess.
We were family #19 in the PLAY Project. Thanks to the PLAY Project and excellent speech therapists, Ben is doing well today. He is a seventh grader in a regular classroom, although he gets support through extra study hall and help with his reading comprehension. His grades are good (nothing below a B). He seems to be having a normal childhood.
Ben’s Bar Mitzvah was on October 22nd, and his friends (73 of them, to be exact) were coming. (Better yet, he is getting invited to the Bar Mitzvahs of other kids that he knows.) Ben’s Bar Mitzvah fell on the day when Jews read the creation story in synagogues around the world. Because Ben is really interested in weather and space, we were delighted that he was assigned a Torah portion that he could identify with.
But, Ben had to write a sermon.
Here is a copy of Ben’s sermon for you to read. It’s a real testament to the way his brain works (e.g. I told him we would read how God created the universe, and he expected there to be a recipe!) But, it also shows that autistic children can recover to the point of being spiritual.
Dr. Solomon, his wife, the PLAY Project consultant who worked with Ben for three years, and the speech therapist who worked with Ben for five years will all be at his Bar Mitzvah—with bells on! (You should have seen Ben’s face when I used that expression to describe their excitement!) We are looking forward to a great celebration—made possible by the great work that folks do to help autistic children get well and reach their true potential.
If you ever need a child as “living proof” that early intervention works, Ben is Exhibit A. I shudder to think what would have happened without the PLAY Project.
Autism Speaks awarded Dr. Solomon’s institute a $15,000 grant in 2007 for a project called Training Respite Care Providers in The PLAY Project Intervention for Autism.
The PLAY Project is a practical application of DIR (Developmental, Individual-differences and Relationship). Dr. Solomon and his group have trained nearly 200 therapists and teachers in 70 agencies across 22 states to train parents to implement The PLAY Project with children. This project was a collaboration with Lansing Area Parents Respite Center to train its staff of respite care providers in The PLAY Project techniques. By training respite care providers, they improved engagement and interaction with the children that they work with.
This was a pilot project to develop a new model for respite care for children with autism spectrum disorder.
In Their Own Words – My Son
Ana Arroyo, Scentsy Independent Consultant, grew up in New York City and resides in Westchester County, New York with her family. Ana was one of the many Scentsy consultants across North America who enthusiastically embraced the company’s campaign to raise funds for Autism Speaks through the sale of the Piece-by-Piece warmer.
My son was diagnosed with having mild-autism tendencies at the age of two. At first I did not understand what “autism” was and my husband explained it to me. That day we both cried (so did my husband’s mother, who we were living with at the time). The hardest part was telling our family (they were always asking “when is he going to speak?”), as we did not know how they would react to this. It turned out that our family members and friends were very supportive and understanding (and again, we all cried).
We enrolled our son in an Early Intervention Program, where slowly he was making some progress. He still played by himself and was set in doing things a certain way. He was use to a routine, so there was times when he would not understand when he did not have school or see his bus come for him.
Every night I would read to him because I wanted him to be able to keep up with other children so that they would see that he was not so different. In doing so, he learned how to read very quickly. One thing that he was fascinated with was the subway trains. He surprised me by remembering exactly where we stopped one day because he had to use the bathroom (he was only five at the time), I was shocked that he remembered. I brought home a train map and every night he would sit in a corner, open the map and just look at it for about an hour and then very carefully fold it back the way it was and put it away. This became a routine for him for several years and always at the same time.
The hardest time for him was high school. We had just moved to Cortlandt Manor from the Bronx and it was hard for him to make friends. He would come home and get upset and cry. I would tell him that everything will work out fine and when you feel this way to take out your Bible and read a passage, which he did every day. I put him in a bowling team in the hope that he would make friends. He enjoyed bowling and taught himself how to curve the ball. He would practice with his brother (who by the way is nine years younger).
My family and friends are so proud of my son, for he has come a long way from what we were told. They told us that he would never graduate with a diploma, might not get a “real” job, etc. Well, my son prove them wrong. My son graduated from both the 8th and 12th grade with diplomas. He served his country by joining the United States Navy (two weeks before 9/11) for five years and was honorably discharged. He became a New York City Police Officer (his dream since he was 14 years old). He is married, has a three year old son and is a Correctional Officer in Mobile, Alabama.
On Thursday, September 29, Autism Speaks received a visit from two special guests who travelled all the way from Idaho. Heidi and Orville Thompson, Co-owners of Scentsy, a rapidly growing party plan company offering a variety of home fragrance products, stopped by to present a check from sales of its Autism Speaks themed ‘Piece by Piece’ Charitable Cause Warmer for an amazing $533,880! Click here for full coverage!
Reflections from our First Weatherstone Grad
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.
New findings on risk of autism in siblings – What do they mean for parents?
A message from Autism Speaks Chief Science Officer Geri Dawson, PhD
Parents of a child with autism are understandably concerned about the likelihood that their subsequent children will be affected. Autism Speaks and its legacy organization, the National Alliance for Autism Research, have been funding research on younger siblings for nearly 15 years– to help us better understand their development.
In 2003, we began organizing and co-funding a very special collaboration—the High Risk Baby Siblings Research Consortium—in partnership with Eunice Kennedy Shriver National Institute for Child Health Development.
This week, we announced the results of the consortium’s largest ever siblings study. The researchers followed younger brothers and sisters from infancy through the preschool period, when autism diagnosis becomes possible. The study revealed a markedly higher risk among younger siblings than had been previously reported.
As the autism community absorbs the news, let me give you some background on the quality and importance of this research—and what it means for parents.
Our “Baby Sibs” researchers are an international network of clinical researchers who have been pooling information from studies of affected families in 21 sites in the US, Canada, Israel and the UK. Alycia Halladay, Autism Speaks director of research for environmental sciences, and Andy Shih, vice president of scientific affairs, have led the consortium from the start and continue to coordinate its activities.
In the study making headlines this week, the consortium researchers assessed 664 infants. Each had at least one older sibling diagnosed with an autism spectrum disorder (ASD). They found that 1 in 5 babies with an older sibling on the spectrum will likewise be affected—more than double previous estimates. The rate was higher among younger brothers—1 in 4, versus 1 in 9 for younger sisters. And autism affected nearly 1 in 3 infants with more than one older sibling on the spectrum. (Previous estimates came out of much smaller and sometimes less reliably conducted studies.)
So what does this mean for parents?
If you have an older child on the spectrum and you are concerned about your infant, talk to your pediatrician about your baby’s risk and your desire for close monitoring. And if you have any concerns about your child’s development, don’t wait. Speak with your doctor about screening.
Here are links to a number of helpful resources:
* Recent research funded by Autism Speaks shows that a one-page baby-toddler checklist can be used effectively as early as 12 months as an initial screen for autism and other developmental disorders. The screener is available here.
* The American Academy of Pediatrics has long recommended that all children be screened for autism at their 18 month well baby checkups, using the M-CHAT toddler screener, available here.
* As a parent or caregiver, one of the most important things you can do is learn the early signs of autism and understand the developmental milestones your child should be reaching. You can see the Learn the Signs guidelines on our website, here.
* Finally, families with one or more children on the spectrum can contact their nearest “Baby Sibs” consortium researcher if they would like to participate in this important research. The list is on our website, here.
By monitoring your infant closely and promptly beginning intervention if signs of autism appear, you can ensure that your child will have the best possible outcome.
Autism risk ‘high’ for kids with older sibling with the disorder. Autism Speaks’ Alycia Halladay, Ph.D., provides perspective of NPR’s All Things Considered. To listen to the segment, visit here.
Screen All Children for Autism
By Geri Dawson, Chief Science Officer, Autism Speaks
Last week, a paper was published in Pediatrics that argued against the routine screening for autism by pediatricians. Three investigators who are part of the Autism Speaks Baby Siblings Research Consortium and I submitted a letter to the editor in response to this paper, which has now been published. The link to the original article and the letter are provided below. Our letter provides a strong rationale and empirical evidence to support the American Academy of Pediatrics recommendations that all children be screened for autism at their 18 and 24 month checkups.
This exchange highlights the important role of the scientific research in directly influencing policy and clinical practice. We were able to cite research, much of which was conducted by Autism Speaks Baby Siblings Research Consortium investigators, to counter the inaccurate statements by the authors of the Pediatrics paper.
Read the letter, Why it is important that screening for autism be provided in routine pediatric care, here. The original paper is available here.
