In December 2010, Autism Speaks joined the Albanian Children Foundation and the Albanian Ministry of Health to develop a regional partnership that can advance autism services and research in South-East Europe. At that meeting, members of five ministries of health (Albania, Bosnia and Herzegovina, Croatia, Macedonia and Slovenia), the Albanian Children Foundation and Autism Speaks pledged to collaborate with support from the World Health Organization (WHO).
Specifically, the newly formed South-East European Autism Network (SEAN) pledged to:
- Raise public and professional awareness in the region
- Provide information resources for parents and professionals
- Collect public health data on the locations of individuals with autism
- Conduct professional training in the areas of diagnosis, clinical management and early intervention
- Provide evidence-based services for both children and adults
- Support the establishment of a regional committee to meet biannually with the goal of developing guidelines and recommendations on public health and autism
Over the last 12 months, Autism Speaks has been working with our partners in the region to ensure that the network is properly organized, identify national coordinators and grow the SEAN membership. Bulgaria, Kosovo and Montenegro recently signed the pledge; and Greece and Serbia may also soon join.
Last week, I and Andy Shih, Ph.D., Autism Speaks vice president for scientific affairs, attended the first official SEAN network meeting, held in Ljubljana, Slovenia with the support of the Slovenian Ministry of Health and the Institute of Autism Spectrum Disorder. Over 300 people attended this conference for national coordinators, local professionals, researchers and families.
Among the speakers was Antonio Persico, M.D., from Campus Bio-Medico University in Rome, who talked about the importance of multi-disciplinary approaches to help identify persons with autism. Connie Kasari, Ph.D., from University of California Los Angeles, presented on current models of early intervention and evidence for its delivery in schools. Lynn Brennan, Ph.D., an independent Applied Behavior Analysis (ABA) consultant, introduced a new video-based parent training ABA program she is developing in collaboration with Deborah Fein, Ph.D., from the University of Connecticut.
The conference was followed by a meeting for the national coordinators, the SEAN secretariat (Albanian Children Foundation) and technical advisors from WHO and Autism Speaks. Andy delivered the welcome alongside representatives from the Slovenian Ministry of Health and the Slovenian Ministry of Labour, Family and Social Affairs.
The national coordinators made short presentations on the state of autism care and research in their country. Though these countries vary greatly in the degree to which they’ve addressed autism, all face common challenges. In many cases, for example, diagnostic services are not available outside of a country’s capital city. Many countries simply lack the resources and manpower to diagnose the increasing number of children with autism who are being referred to their clinics. In addition, all the national coordinators spoke of the need to have more diagnostic, screening and awareness materials translated into their national languages. They also described a general lack of information on how many children are affected by autism within each country and a lack of public health infrastructure to identify undiagnosed children and adults.
In prioritizing SEAN’s first projects, we agreed to design a survey to assess baseline public health data from each country. This will help each country assess what it needs to improve clinical practice and measure future progress.
The network will also work together to translate Autism Speaks tool kits and other awareness materials and to increase national and regional awareness through World Autism Awareness Day and Light It Up Blue.
The network’s training priorities will revolve around diagnosis and early intervention. Autism Speaks will organize a training workshop at the Regional Centre for Autism in Albania later this year. The network also agreed to explore ways to work more closely with the WHO South-East European Health Network.
SEAN members plan to meet again in April 2013 in Sarajevo, Bosnia and Herzegovina. At that time, the national coordinators will report on the progress they have made in improving awareness and services for families within the region since these first crucial meetings.
Our efforts in South-East Europe are an important part of our Global Autism Public Health Initiative (GAPH). GAPH embodies Autism Speaks’ commitment to the global mission of improving the lives of all individuals with autism. Our international partners include families, researchers, institutes, advocacy groups and governments in over 30 countries. By working together, our partners contribute significantly and collectively to a greater understanding of autism.
Today’s “Got Questions?” answer comes from clinical psychologist Jeffrey Wood, Ph.D., of the Center for Autism Research and Treatment at the University of California, Los Angeles. The recipient of three Autism Speaks grants, Wood has extensively studied anxiety in elementary school and adolescent children with autism.
Anxiety is common among children and adults with autism spectrum disorder (ASD). Research suggests that at least 30 percent of children withASDalso have an anxiety disorder such as social phobia, separation anxiety, excessive worry/rumination, obsessive compulsive disorder or a phobia such as extreme fear of spiders or loud noise. Indeed, many of the children involved in our ASD research suffer multiple anxiety disorders.
It’s important to remember that anxiety can range from fluctuating, mild and completely understandable to unremitting, severe and irrational. Most people experience some form of anxiety on a regular basis, and this generally involves some degree of physical discomfort as well as negative mood.
Moderate levels of anxiety can actually be a positive, motivating force to increase one’s level of effort and attention when working or socializing. However, research on how children adapt to different settings (academic, athletic, social, etc.) suggests that high levels of anxiety can interfere with academic and social success.
Several types of cognitive behavioral therapy (CBT) have been developed to address anxiety in children with ASD, with promising results from several clinical research centers. Techniques include challenging negative thoughts with logic, role-play and modeling courageous behavior, and hierarchical (step by step) exposure to feared situations.
We and others have developed programs using modified versions of CBT that was originally developed for typically developing youth. These directly address problematic levels of anxiety in children with ASD. Several of these programs incorporate “special interests” to motivate children to engage in treatment activities during weekly sessions. For example, the therapist may use favorite cartoon characters to model coping skills, or intersperse conversations about a child’s special interests throughout the treatment sessions to promote motivation and engagement.
Depending on the program, these treatment sessions usually last 60 to 90 minutes each and extend over a course of 6 to 16 weeks. Most treatment plans also require parent involvement and weekly homework assignments.
Results from our randomized clinical trial, case studies and related reports indicate that most children with ASD who complete such programs experience significant improvements in anxiety as well as some improvement in social communication skills and other daily living skills. 1-9
We and others continue to conduct research on these and related behavioral interventions for relieving anxiety. At present these intensive and scientifically studied treatment programs are available primarily at a small number of autism treatment centers. We hope that further research and dissemination efforts will make them become more accessible to families throughout North America and elsewhere.
1. Wood JJ, Gadow KD. Exploring the nature and function of anxiety in youth with autism spectrum disorders. Clinical Psychology: Research and Practice. (In press)
2. Wood JJ, Drahota A, Sze K, Har K, Chiu A, Langer DA. Cognitive behavioral therapy for anxiety in children with autism spectrum disorders: a randomized, controlled trial. Journal of Child Psychology and Psychiatry. 2009;50(3):224-34.
3. Sze KM, Wood JJ. Enhancing CBT for the treatment of autism spectrum disorders and concurrent anxiety: a case study. Behavioral and Cognitive Psychotherapy. 2008;36:403-9.
4. Chalfant AM, Rapee R, Carroll L. Treating anxiety disorders in children with high functioning autism spectrum disorders: a controlled trial. Journal of Autism and Developmental Disorders. 2007;37(10):1842-57.
5. Lang R, Regester A, Lauderdale S, Ashbaugh K, Haring S. Treatment of anxiety in autism spectrum disorders using cognitive behaviour therapy: A systematic review. Developmental Neurorehabilitation. 2010;13(1):53-63.
6. Reaven JA, Hepburn SL, Ross RG. Use of the ADOS and ADI-R in children with psychosis: importance of clinical judgment. Clinical Child Psychology and Psychiatry. 2008;13(1):81-94.
7. Scarpa A, Reyes NM. Improving emotion regulation with CBT in young children with high functioning autism spectrum disorders: a pilot study. Behavioural and Cognitive Psychotherapy. 2011;39(4):495-500.
8. White SW, Albano AM, Johnson CR, et al. Development of a cognitive-behavioral intervention program to treat anxiety and social deficits in teens with high-functioning autism. Clinical Child and Family Psychology Review. 2010;13(1):77-90.
9. Sofronoff K, Attwood T, Hinton S. A randomized controlled trial of a CBT intervention for anxiety in children with Asperger syndrome. Journal of Child Psychology and Psychiatiry. 2005;46(11):1152-60.
Read more autism research news and perspective on the science page.
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.
The mission of Roses for Autism is to grow independence in the business world through a replicable Autism training and employment program integrated in a successful and sustainable rose business. The vision is to demonstrate a replicable working model for inclusive transitional employment for youth and adults on the Autism Spectrum. In 2011, Autism Speaks awarded $25,000 to Roses for Autism through its Family Services Community Grants program.
Roses for Autism is a unique venture, combining training and employment of people on the autism spectrum with the growth and sale of flowers. This is a business that not only employs people; it employs people who have an unacceptably high level of unemployment. The project location is Pinchbeck’s Rose Farm in Guilford, CT.
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Roses for Autism is unique, integrating three businesses in a single enterprise:
- Employment and training for people with Autism Spectrum Disorders
- Agricultural – Raising flowers in the country’s largest free-standing glass greenhouse
- Sales – Rooted in autism cause-based marketing
Over the course of the grant period, we have learned:
- It is not only the lack of job skills, but also the lack of social skills that hamper success in the workplace.
- It takes time to successfully develop individual strategies for participants and transfer them to general work environments.
- It is essential to offer other resources to participants outside of employment strategies.
- Participants gained confidence, school grades improved and participation in the program is having a positive impact on people’s lives.
Incidental reports from families, schools and program staff noted that some participants are reporting and/or exhibiting increased confidence, better grades in school and motivation to be more social. In some instances, participants are forming friendships with peers, staff and/or customers. One unexpected and extremely exciting success is the young man who after being driven back and forth to the program by his mother, learned to navigate public transportation to get to work independently. Desiring still more independence, he recently secured his driver’s license – a goal that was beyond his wildest expectations. He is now working toward saving his money from his job at the rose farm to buy a car.
Roses for Autism currently employs eight individuals on the spectrum that are working in an integrated environment for competitive wages. During 2011, 290,500 roses were sold.
For more information, please visit www.rosesforautism.com!
The grant cycle is officially open on February 17.
To learn about our newly announced RFA for Family Services Community Grants, please visit http://www.autismspeaks.org/family-services/grants/community-grants
In 2003, I moved to California from my native Hawaii. I’d just graduated from college, and I immediately accepted a job with Autism Genetic Resource Exchange (AGRE) with one goal in mind: Start building my career in research!
I didn’t know that this job would become so much more.
Autism quickly became my passion. As I learned more about the complexities of autism, I knew I wanted to make a difference in the lives of affected families. My interactions with AGRE parents and grandparents have been amazing. They have remarkable stories about their children and how each is wonderfully unique.
At the same time, I find it a great challenge to address some of their greatest concerns. I understand their urgent need for answers. But as someone trained in science, I also know that real answers sometimes take years to deliver. I remind our parents to never give up hope.
One of my most memorable interactions occurred at a Defeat Autism Now (DAN) conference several years ago. Autism Speaks had just started to become a prominent player within the autism community, and there was still apprehension about us. Unfortunately, I was not well equipped to answer some of the challenging political questions people asked me that day! I felt like a moving target and was left confused because I had thought we were all working towards the same goal: helping people with autism!
Just as I was packing up for the day, a man came over to the Autism Speaks table to talk with me. “I’ve been meaning to come over here all day,” he said. “I just want to thank you for being here. It means so much to us that you’re here to support us. Thank you.” To this day, whenever I feel lost in the politics and paperwork, I remember that moment and am reminded by why I’m here at AGRE.
Ultimately, I think the future of autism research lies in collaboration with scientists and families around the world. So it is very exciting to see AGRE’s mission begin to expand outside of North America. We know that autism is a global issue, and I think diversity is the glue that autism research needs to put all the pieces together.
In closing I want to thank all our supporters – those who Walk, those who participate in research, and everyone who cares about our mission to improve the lives of all who struggle with autism. Thank you so much. I love being part of this community.
Recently, someone posed a question that made me think hard about the immediate relevance of our research to those affected by autism. I had been explaining Autism Speaks’ new focus on developing medicines that, one day, will target autism’s core symptoms in ways that reduce disabilities and improve learning abilities. Someone commented that this would likely take years to accomplish. I had to agree. His follow-up question: So, how does research help families today?
For the answer, I found myself thinking about how the Cystic Fibrosis Foundation faced this same question decades ago. Like Autism Speaks, the Cystic Fibrosis Foundation was grappling with a disorder in its medical infancy. Cystic fibrosis was defined as a medical condition in 1938. The Foundation followed in 1955. At that time, the median age of survival for those affected by the disorder was just ten years.
The leadership of the Cystic Fibrosis Foundation knew they were grappling with a complex disorder that would take years to fully understand. So they developed parallel research efforts. One focused on the immediate development of improved diagnosis and treatments that could ease symptoms. The other focused on basic science with the goal of ultimately revolutionizing treatment with therapies that target the disorder’s root causes.
Their short-term efforts included support for a network of clinical care and research centers, a patient registry and studies that focused on improving treatment of chronic symptoms and associated medical conditions. Within a relatively short time, diagnostic methods improved and physicians began adopting new gold-standard practices, including new methods for fighting lung infections and improving lung function – all made possible through research that the Cystic Fibrosis Foundation helped support. The median age of survival jumped from 10 years to 37 years!
Meanwhile, long-term research efforts focused on understanding the causes and biology of cystic fibrosis. In 1989, scientists made major breakthroughs in genetic understanding. This, in turn, led to tremendous insights into the disorder’s underlying biology. Then, just last week, the FDA approved the first drug to treat the underlying cause of cystic fibrosis, rather than its symptoms. One doctor described how his patient was able to “shovel snow for the first time.” Not coincidentally, the Cystic Fibrosis Foundation had contributed millions of dollars to the development of this drug (Kalydeco). Its early funding had been essential to convince drug companies to make the larger financial investment needed to bring any successful drug to market. In the process, the foundation negotiated a deal to earn drug royalties, which will now be reinvested in further research advancements. Just as exciting, other “disease-modifying” cystic fibrosis drugs are moving through the research pipeline.
This is the same strategy that Autism Speaks is taking with investments in both research that improves quality of life in the short term and longer-term research that promises to transform how autism is treated.
Here are just a few examples of funded research projects with the potential to improve quality of life in the near future:
- Identification of preventable environmental risk factors for autism spectrum disorder (ASD)
- Validation of questionnaires that pediatricians can use to screen babies for ASD and, so, offer earlier intervention that will improve outcomes
- Biomarkers (e.g. immune alterations) that could identify infants at risk for ASD
- Development of effective early interventions for babies before the full syndrome develops
- Support of technological inventions to enhance communication in nonverbal persons
- Development of physician guidelines for assessment and treatment of medical conditions associated with ASD
- Development of more effective treatments for associated conditions, including sleep disturbances, GI disorders, seizures and anxiety
- Development of interventions to improve employment success and relationship skills in adults
- Development of cognitive rehabilitation interventions for adults
Even as we support the development of these improved services, we are also investing in research that can identify the most effective ways to broadly implement new gold-standard practices to produce positive changes in community healthcare, education and support services for all persons who struggle with autism. This type of “dissemination research” also tells us how to best target limited resources.
Meanwhile, our long-term investments are advancing the understanding of autism’s underlying biology and the genetic and environmental factors that contribute to its development. These investments are exploring the role of the immune system, brain signaling pathways and the GI system, among other topics. Over the last five years, tremendous progress in these areas has advanced research to the point where we are now collaborating with industry to develop novel drugs with the potential to ease severe and disabling core symptoms – in adults as well as children. Fortunately, the tools we have available today will make drug discovery and development much faster than before.
Connecting the dots
At Autism Speaks, the research we fund interconnects with all parts of our mission, including awareness, advocacy and family services. Our awareness campaign, for example, is shaped by research that has revealed great disparities in access to services by communities such as ethnic-minority and low-income families.
Our advocacy of insurance reform, in turn, critically depends on research that demonstrates how early intervention improves outcomes. Research also plays a critical role in bolstering our advocacy for adolescents and adults. For example, a recent study demonstrated that adults with ASD face greater challenges in employment and social participation than do adults with other common disabilities. More importantly, this same study suggests that providing transition services immediately after high school is the most cost effective way to improve outcomes. We can use this information to advocate for improved services during the transition from high school to adulthood. Other currently funded studies promise to help us advance insurance reform to assure coverage of other interventions with proven benefits for school-age children and adults.
Similarly, Autism Speaks is funding research aimed at determining the real-world effects of proposed changes in the diagnostic criteria for autism. Will these new criteria exclude people previously diagnosed with ASD? Will they affect access to vital services? These answers will be crucial to our ability to advocate for any necessary changes in the proposed criteria.
While we see our research improving lives now, we remain committed to our long-term goals of revolutionizing treatment of ASD. I know in my heart that someday we will be making the kind of breathtaking announcement that we heard from the Cystic Fibrosis Foundation last week. The day is coming. In the meantime, we will ensure that our scientific mission remains relevant to our families today.
Chief Science Officer, Autism Speaks
Vitamin and mineral deficiencies are common among those with autism, and in many cases, they relate to overly restricted eating habits. This is understandable as autism spectrum disorders (ASD) are commonly associated with gastrointestinal problems and sensory issues with food textures and smells. It is also possible that the underlying biology of autism may cause deficiencies in the digestion of certain foods, which could affect vitamin intake. For example, a recent study documented that some children with autism and gastrointestinal disturbances have impaired carbohydrate digestion.
Normal growth and good health depend on the body absorbing and metabolizing the vitamins and minerals that are part of a well-rounded diet. In addition, studies have identified several examples of nutrient deficiencies affecting thinking and behavior – for example, the ability to focus or stay alert in school. Also, nutrient deficiencies such as those involving omega 3 fatty acids may worsen behavioral symptoms such as irritability and hyperactivity. As such, it’s entirely possible that taking supplements may improve such symptoms in some individuals with ASD – especially if the individual has clinical or laboratory evidence of low levels of crucial vitamins, minerals or other nutrients.
In recent years, researchers have looked deeper into how well particular vitamins, minerals and nutritional supplements lessen the severity or intensity of core autism symptoms – namely communication difficulties, social challenges and repetitive behavior. The results of these clinical studies have been mixed.
One recent large study examined the effect of an over-the-counter supplement called Syndion on 141 children and adults with autism, as compared to the effects of a placebo pill. The researchers reported that the product effectively raised levels of vitamins and minerals in the blood. They also showed that it produced no significant side effects during the 12-week study. The study did not demonstrate meaningful improvements in autism symptoms according to three out of the four assessment tools used. It did, however, show modest but statistically significant improvements on a fourth measure (the Parental Global Impressions-Revised questionnaire) in terms of hyperactivity, tantrums and receptive language.
When interpreting the meaningfulness of these results, readers may take note that the two lead authors were also the developers of the commercial product being tested.
Despite the limitations of this study, it raises important questions as to whether vitamins may be helpful in addressing the core symptoms of autism. It is important to continue supporting research that will provide parents and individuals with clear answers about the value of vitamins, minerals and other nutritional supplements in ASD. Autism Speaks is currently funding several projects to this end, including a new study investigating the possible role of carnitine deficiency in some individuals with ASD. (Carnitine is a nutrient used by cells to process fats and produce energy. It is abundant in red meat and dairy products, but some individuals appear to have difficulties absorbing and/or metabolizing it.)
If you are worried that you or your child may have a nutritional deficiency, supplements may be a good option to consider. It is important that you consult with your doctor about brands and dosages. Supplements vary in quality and potency, and some may have harmfully excessive levels of certain vitamins, minerals or other ingredients.