Message from the Chief Science Officer regarding the Institute of Medicine’s report on Adverse Effects of Vaccines
Geraldine Dawson, Ph.D., Autism Speaks Chief Science Officer
On Thursday, August 25, the Institute of Medicine’s Committee to Review Adverse Effects of Vaccines Board on Population Health and Public Health Practice released its report on the scientific evidence related to adverse effects of vaccines. The Institute of Medicine (IOM) is a non-profit, non-governmental organization which is part of the National Academy of Sciences. IOM members are scientific and medical experts who serve as pro bono as advisors to the U.S. Congress and other policy-makers. They are periodically asked to provide a review of the evidence on matters of public concern and welfare.
Among several other topics, the IOM committee specifically reviewed the evidence regarding whether the MMR vaccine or the DTaP vaccine is causally linked to autism. In addition to reviewing epidemiological evidence, they reviewed case studies and research on biological mechanisms that might explain a connection between a vaccine and an adverse outcome, such as autism. They specifically assessed the evidence that vaccines could alter neuronal development resulting in autism symptoms, arising from chronic encephalopathy, mitochondrial disorders or other underlying disorders. The committee reviewed 22 epidemiological studies that evaluated the connection between risk for autism and the MMR vaccine and concluded that the evidence does not support a causal link between the MMR vaccine and autism. The committee only found one study on the relationship between the DTaP vaccine and autism and concluded that the data were insufficient to assess an association.
The committee noted that reports of case studies linking the onset of autism to infectious diseases such as encephalitis and malaria suggest that infection or inflammation may underlie some cases of autism. Furthermore, evidence from postmortem brain tissue suggests that autism may involve inflammatory processes affecting the brain. The authors argue that, at a minimum, prior to ascribing autism to vaccination it would be important to rule out chromosomal and single-gene defects, including a variety of metabolic (e.g. mitochondrial disorder) and inflammatory or infectious diseases that may exist prior to vaccination.
The IOM report is consistent with Autism Speaks’ policy statement on vaccines. Given the present state of the science, the proven benefits of vaccinating a child to protect them against serious diseases outweigh the hypothesized risk that vaccinations might cause autism. Autism Speaks continues to support research that explores the relationship between innate or acquired metabolic, inflammatory, or infectious diseases that may play a role in the etiology of autism.
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.
* 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.
I thought you might enjoy seeing a few highlights from Andy Shih and Michael Rosanoff’s recent efforts in Bangladesh. This is a country where resources are very low, and there is a great need to protect the rights and improve the treatment of people with autism. Yet despite few resources, this country is stepping up to improve services for all people with autism in their country. Saima Wazed Hossain from Bangladesh remarked at a recent United Nations meeting that, if Bangladesh can tackle the challenges of autism, any country can. Indeed, it was Bangladesh that co-sponsored the UN conference that brought together leaders from many countries, the WHO, and key White House staff to focus on the needs of people with autism.
Andy and Michael, with the help of several experts from the US, are providing technical assistance and helping galvanize the Bangladesh government and other leaders to improve the lives of people with ASD. What is noteworthy is that this effort requires very little in terms of money from Autism Speaks but can have a transformational effect on an entire country.
Geri Dawson, Chief Science Officer
Autism Conference Ends with High Hopes
The landmark autism conference ended in the city yesterday as its chief architect, Saima Wazed Hossain, hoped that the two-day meet would generate new hopes among the families in and outside the country. Read more …
Call for quality healthcare for persons with autism
An international conference on Autism Spectrum Disorders and Development Disabilities in Bangladesh and South Asia adopted the “7-point Dhaka Declaration,” with a call for promoting stronger coordinated actions in the region and globally. Read more …
Autism Meeting Ends with ‘Great Response’
The two-day international conference on autism concluded on Tuesday with pledges from the World Health Organization to support Bangladesh in autism care. Read more …
by Geraldine Dawson, Ph.D., Chief Science Officer, Autism Speaks
In San Diego last week, The International Meeting for Autism Research (IMFAR) celebrated its 10th anniversary. Only a decade ago, prompted by parents, a small group of scientists pulled together the first IMFAR meeting. As program chair of IMFAR’s second meeting in 2002, I recall spreading the submitted abstracts out on a large conference table in my lab; working with my graduate students, we created the conference schedule by moving pieces of paper around the table’s surface! In 2007, when my colleague, Elizabeth Aylward, and I hosted the meeting in Seattle, we were thrilled that 1,000 people attended the conference. This year, only four years later, nearly 2,000 people attended IMFAR inSan Diego, representing a 10-fold increase in attendance in only a decade. The conference not only has changed in size, it has also changed in a number of other significant ways:
Autism as a global challenge
The international scope and participation has grown tremendously. Whereas the first meetings included scientists from Europe and a few from Asia, today’s IMFAR includes scientists from virtually all continents on the globe. Autism Speaks sponsors an annual meeting at IMFAR of the International Autism Epidemiology Network (IAEN), a group now comprised of over 100 scientists from 30 counties! Topics of this year’s IAEN meeting focused on how to deliver services to low resource communities, both in the U.S.and in developing countries. Travel awards were given to 13 international scientists from countries that included Oman, Turkey, Nigeria, Palestine, China, India and Argentina, among others.
Attracting a new generation of scientists
I am especially encouraged by the fact that the number of bright young graduate students and postdocs involved in autism research is rapidly growing. Graduate students and postdocs from diverse fields ranging from neuroscience to education shared their research results and had an opportunity to hear and interact with scientists from a wide range of disciplines. Thirty-seven students received travel awards to IMFAR; they travelled not only from around theUS, but also from the UK, Germany, France, Spain, Canada, Japan, Mexico, Australia, and Israel. IMFAR provides a unique opportunity for graduate students to learn and be motivated to devote their careers to autism research. I was honored to participate in the “Meet the Experts” luncheon which provided an informal venue for students to talk in depth with senior scientists about their careers and areas of expertise.
People with autism and their families have a real presence in the IMFAR meeting
The inclusion of families and individuals on the spectrum as important and influential participants in the planning and conduct of IMFAR has steadily increased over the past decade. Community members are part of every IMFAR committee as well as the program planning. The committee I chaired this year that oversaw the INSAR board elections included a mother of a child with ASD and an adult with Asperger’s syndrome. At the meeting, parents and self-advocates with ASD attended lectures, gave presentations, and made opening remarks. Families with children on the spectrum could be seen throughout the meeting and especially enjoyed the technology demonstrations and booths. Video coverage was managed by Alex Plank, a person on the spectrum who hosts the website Wrong Planet.
Scientific progress provides hope for the future
Finally, I was struck by how both the breadth and depth of autism research has increased over the past 10 years. There are so many ways in which our thinking about autism has changed dramatically. To bring home this point, here are a few of the key themes and topics of research that emerged from this year’s conference:
- We now recognize that autism affects the whole body, not just the brain. Presentations reflecting this theme focused on studies of mitochondrial dysfunction, oxidative stress, sleep, gastrointestinal disorders and nutrition.
- The role of the environment and gene-environment interactions are now recognized as important etiological factors. Examples at this year’s meeting included studies on a variety of pregnancy and prenatal factors (fertility therapies, medication use, gestational diabetes, very low birth weight, maternal infection), neurotoxins (mercury, occupational exposures, air pollution), and specific gene-environment interactions.
- Autism can be recognized in infants less than one year of age, and interventions appropriate for infants and toddlers can alter the trajectory of children’s developmental outcomes. A wide range of new and innovative methods for detecting autism in infants were presented, along with several new methods for treating infants.
- There is an increasing interest in addressing the needs of two previously under-recognized populations of people with autism: adults and nonverbal individuals. I chaired a symposium on nonverbal autism in which scientists presented findings based on EEG that demonstrated that many children with autism who are unable to speak nevertheless have strong intellectual abilities and language comprehension. The same symposium illustrated how speech-generating devices can be effectively incorporated into early intervention to promote communication in children who have not developed speech. Studies on adults with autism were diverse, ranging from those focused on intervention strategies to improve quality of life, to how to promote independence and optimal health.
- The promise that technology holds for improving the quality of life for people with autism is more and more evident. This was especially clear in Autism Speaks’ Innovative Technologies Demonstration. The session was lively as adults and children with ASD and their families tried out the games and communication devices. We sponsored an international student technology design competition that attracted over 120 entries from around the world. I had the pleasure of giving the awards to the top three designs, all of which focused on the theme of helping people with autism connect to the world around them.
- Autism is no longer a “black box” – instead, the puzzle of autism’s underlying biology is being put together piece by piece. Using information gleaned from a decade of genetic research, neuroscientists presented papers that shed light on the role of the immune system in autism, identified several neural signaling pathways affected in autism, and described strategies for helping repair the brain’s synaptic function. One of the keynote lectures focused on the promise of a new technique called “induced pluripotent stem cells” which allows stem cells to be made from skin tissue. These cells are being coaxed into forming neurons and allow scientists to compare precisely the difference between neuronal functioning between persons with and without autism. These insights and technologies are providing clues to new autism drugs which are now being tested in animal models.
While I am happy to see the remarkable progress that has been made over the past decade, I am eagerly looking forward to the next 10 years, knowing that the pace of scientific discovery will only accelerate. I am hopeful that the science of the future will allow us to continue to make even more of a difference in the lives of people with autism of all ages.
Video Credit: Alex Plank
By Leanne Chukoskie, Autism Speaks
In 2008, Autism Speaks kick-started research in the area of non-verbal autism through its High-Risk High-Impact initiative. This year at IMFAR, Autism Speaks-funded research was featured in the Invited Educational Symposium titled Characterizing Cognition in Non-verbal Individuals with Autism: Innovation, Assessment and Treatment.
Geraldine Dawson, Ph.D., Autism Speaks’ Chief Science Officer, chaired the session and set the stage for the audience to appreciate the importance of this particular topic. An estimated 30% of individuals living with autism are functionally non-verbal, yet very little research effort was directed toward helping this group communicate their wants and needs. The inability to communicate leads caregivers and clinicians to the presumption that the cognitive skills in these individuals were low because the tests typically used to assess cognitive skill require verbal or behavioral responses that this group of individuals does not readily produce.
The first speaker was April Benasich, Ph.D. of Rutgers University, who received an Autism Speaks grant for her research. Dr. Benasich presented data on innovative new studies on 3-7 year old non-verbal children with autism. Using tasks that were designed to assess children’s capacity to identify mismatches between sights and sounds. For example, a picture of a frog might be presented with the spoken word “frog” or “cow.” The latter, obviously incorrect, pairing generates a spark of electrical activity in the brain called a mismatch negativity about 400 ms after the stimulus was presented. This sort of task can also be used to probe contextual understanding in non-verbal children by pairing, for example, the frog with “green” or “pink.” Even greater complexity can be tested by presenting sentences with errors in syntax. When heard by children who understand language, these syntax errors generate the same kind of brain potential.
Dr. Benasich and her colleagues developed a training protocol to get the children comfortable with the application and wearing of the EEG net as well as exposing them to all of the concepts presented in the experiment. The results revealed some similarities and some differences in the processing of sensory stimuli in the non-verbal children and this is not unexpected as they continue analyzing these data and also new data on older non-verbal children.
However the real power of using EEG techniques for assessing cognitive capacity is that it can tell us for an individual what we cannot get from standardized cognitive tests. Dr. Benasich presented results from individuals, some of whom were picking up the mismatches in the pictures and sounds, or sentence errors and some of whom did not.
This was the launching point for the next presentation from John Connolly, Ph.D., of Mc Master University. Dr. Connolly typically studies individuals who suffered traumatic brain injury and must be assessed to appropriately design rehabilitative therapy. He and his colleagues adapted a standard test for word comprehension called the Peabody Picture Vocabulary test (PPVT) into a tool that can be used by measuring brainwaves – no oral or manual response required. A grant from Autism Speaks allowed him to adapt his methods to work with non-verbal individuals with autism. By learning exactly what these non-responsive adolescents can and cannot understand, one can more appropriately design therapies to help them move to the next stage of learning.
Nicole Gage, Ph.D. of UC Irvine relayed her studies of both speech and sound processing in minimally-verbal children with autism using a different brain measurement tool called magnetoencephalography or MEG. One advantage of MEG for children is that nothing actually touches the child during the measurement. Although they must lie very still, there is no noise and the device resembles a fancy salon hair dryer. Using this technology, Dr. Gage and her colleagues are finding differences in very early in brain processing responses to tones and mature early in human development. These responses occur at the level of the auditory brainstem and may be at least partially responsible for the atypically responses measured to both tone and speech sounds observed by both Dr. Gage and other researchers at the later stages of brain processing in auditory cortex.
Lastly, but perhaps most importantly, Connie Kasari, Ph.D., of UCLA and the organizer of this special session presented her Autism Speaks-funded treatment research specially tailored for non-verbal children between the ages of 5 and 10 years old. Dr. Kasari uses structured play-based methods to build a scaffold and provide context for encouraging communication in these children. Her randomized controlled trial design encompasses treatment sites at UCLA, Vanderbilt, and Kennedy Krieger and involves the play based therapy especially designed for these children and also a treatment arm that includes an alternative and augmentative communication device. Dr. Kasari showed data from the group thus far – after three months of the six-month treatment trial. Not only are some individual children making incredible strides toward initiating functional communication, but overall 75% of the children in the study are responding to the therapy. Interestingly, looking back at the detailed assessments taken on the participating children upon their entry into the study no particular features distinguished the responders from the non-responders thus far.
These studies break new ground in reaching those with autism who cannot speak. However, the next steps will almost certainly be the most exciting. As more researchers and clinicians learn about these studies and are able to take advantage of the results presented, we will be better able to understand and assist individuals who are now non-verbal. These sentiments were perhaps captured best in the enthusiastic response the speakers received from the loved ones of those affected.
Autism Speaks Chief Science Officer Geraldine Dawson wrote a letter to the New York Times in response to an editorial entitled “Autism Fraud.”
To the Editor:
Re “Autism Fraud” (editorial, Jan. 13):
The latest British Medical Journal paper about autism and vaccines, which provides evidence that the initial report linking autism and vaccines was fraudulent, and the media coverage that ensued, miss an important point: Until science discovers the causes of autism and explains its dramatic increase, parents will continue to reach their own conclusions and desperately try a wide range of treatments, whether there is evidence to support them or not.
The answer is not to look to the past and look for blame, but rather to look to the future. We need increased research financing directed toward rigorous science that can provide the answers that parents are looking for and deserve. Until this happens, we will continue to wallow in controversy, and people with autism and families will continue to struggle with autism on their own.
Chief Science Officer, Autism Speaks
New York, Jan. 13, 2011
This guest post is by Geri Dawson, Ph.D., CSO, Autism Speaks.
The task of this week’s meeting of the Interagency Autism Coordinating Committee (IACC) in Rockville, Md. was to approve an update to the IACC’s Strategic Plan for Autism Research. Most of the updated sections had been approved at earlier meetings, but the committee still had to grapple with the introduction, which contained several sticky phrases. The committee is a diverse group of people ranging from a parent who believes that autism is the result of injury caused by toxins in our environment to an adult on the spectrum who views autism as a natural part of our human diversity. Given the wide range of perspectives, words matter a lot.
For example, the committee all agreed that the plan should convey a sense of urgency. Autism represents a serious public health crisis and immediate action is required. So far so good. But how should the plan convey that sense of urgency? As the discussion began, a lively debate ensued about a proposed revision to the plan’s opening paragraph, which was adapted from the Autism Speaks’ website:
Today, autism is more common than childhood cancer, juvenile diabetes and pediatric AIDS combined, and the increasing numbers of children being diagnosed with autism has created a national health emergency. In a September 30, 2009 speech at the National Institutes of Health, President Obama specifically cited autism, along with cancer and heart disease, as one of three health conditions targeted for major scientific research investment through the American Recovery and Reinvestment Act. The President expressed his hope that research into genetic and environmental factors would result in strides in early intervention, treatments and therapies to help people affected by autism achieve their fullest potential (hot button words bolded).
The words that some members were concerned about were “childhood cancer, juvenile diabetes and pediatric AIDS.” They objected to the notion of comparing autism to diseases such as these and felt such a comparison was disrespectful to people with autism. After all, autism is not a terminal disease like cancer, one person pointed out. Others noted that the comparison was meant only to convey the scale of the problem, not to imply that autism was a terminal disease. They said that the comparison was meant to convey the huge number of people who are affected by autism. The discussion continued until Tom Insel finally pointed out that the committee had spent 30 minutes discussing the first sentence of the plan, and we still had a lot of work to do. A vote was then taken and the revision was adopted.
Similar issues were raised about the following passage, which was part of last year’s document:
The cost of ASD to affected people, families, and society is enormous. A great majority of adults with ASD struggle with ongoing and mostly unmet needs for employment, housing, services, and supports. Compounding these stressors, families with a child with autism typically lose income, possibly as a result of one parent leaving the workforce in order to care for and meet the special health and educational needs of the child. The cost to society of ASD is currently estimated to be $35-$90 billion annually, the higher estimate being comparable to Alzheimer’s disease (hot button words bolded).
Again, some committee members asked whether we should we compare ASD to Alzheimer’s disease and asked what kind of message we send to people with autism when we characterize autism as a “burden to society?” This passage could be alienating to parts of the autism community, it was pointed out. Other committee members argued that people should be made aware that families do carry a substantial burden, both financially and emotionally, especially when these families don’t have adequate services and interventions. They noted that it is important to know how much autism costs society, as this helps justify the need to increase our investment in developing better interventions. By a slimmer margin, a committee vote kept this passage in.
Less controversial but still garnering substantial discussion was the proposal to add a cross-cutting theme on the ethical, legal and social implications of autism research. The proposed language was:
As more progress is made in the autism research arena, new ethical, legal and social implications of ASD research will need to be considered and taken into account by researchers and consumers of research findings. In particular, genetic research poses unique ethical risks that require consideration both within research projects focused on other questions and in efforts dedicated specifically to exploring these ethical challenges and the appropriate responses to them. As such efforts are undertaken, it is critically important to include the autistic adult community, family members of individuals on the autism spectrum and other stakeholder groups within the discussion (hot button words bolded).
The committee was in unanimous agreement that studying the ethical issues associated with autism research is very important. At an earlier IACC meeting, I had proposed adding a research objective to this effect. The committee decided, however, that virtually all research on autism poses ethical risks and benefits, whether that research is on genetics, early screening or interventions. Furthermore, it was decided that, whenever possible, all people with autism, not just adults, should be part of the discussion about the potential risks and benefits of research.
Finally, the committee struggled with whether to add another new cross-cutting theme, one focused on self-determination. Self-determination refers to the ability to consider options and make appropriate choices regarding where to live, work, and spend one’s leisure time. Although in theory and spirit most people on the committee agreed with this concept, some expressed the concern that it was unrealistic to expect a severely impaired person with autism to live a self-determined life. “Could we perhaps substitute the phrase ‘supported self-determination,’” one committee member asked. When consensus wasn’t easily reached, the committee entertained deferring the decision until they had more time to deliberate and understand the implications of adding such language to the strategic plan. Finally, however, a vote was taken and the proposal to include the cross-cutting theme of self-determination was adopted by a slim margin.
Unlike some other committee members, I felt confident that adding a cross-cutting theme on self-determination would strengthen the strategic plan and argued strongly for its inclusion. As a clinician who has worked for years with people with autism of all ages, including those who are severely affected, I have witnessed the power and success of empowering all people with ASD with self-determination. This begins early on with teaching young children with ASD how they can effectively express their needs, wants and preferences. By doing so, such a child will have stronger self-esteem and be happier, more motivated to learn, and more likely to succeed. A study of two types of applied behavior analysis, one in which the goal and reward was chosen by the therapist and another in which they were chosen by the child with ASD, found that allowing children to make choices and work with preferred materials resulted in more highly motivated children and faster learning rates. Similarly, I have worked with severely affected nonverbal adults whose only option for expressing their dissatisfaction with their lives was to become aggressive or noncompliant. Offering these adults appropriate choices and control over how they wanted to spend their work and leisure time allowed them to live happier, more productive lives with little need for disruptive behavior.
There is often the misperception that self-determination means that a person is entirely autonomous or independent. All of us are dependent on others, and none of us is entirely autonomous. However, expressing one’s preferences, making choices, and having a sense of control over one’s life is not only a human right, it is an inherent part of being a healthy, happy human being.
I left the meeting feeling that the IACC has come a long way. Although there was disagreement among its members and people felt passionately about their positions, people treated each other with respect. Unlike the stalemate we are witnessing in our federal government with parties strongly entrenched and unwilling to “reach across the aisle,” committee members were more flexible with different subgroups of people coalesced around different positions. It was clear that, although we each come from a different perspective, we are all working toward a common cause: improving the lives of people with autism and their families. Working together, rather than against, each other can only accelerate our efforts toward this common goal.
Many studies have been conducted on large samples to determine if a link exists between vaccination – specifically the measles-mumps-rubella (MMR) and thimerosal-containing vaccines – and increases in the prevalence of autism. These studies have not supported a link between either the MMR vaccine or thimerosal and the increased prevalence of autism. Scientific evidence indicates that the proven benefits of vaccinating a child to protect them against serious diseases outweigh the hypothesized risk that vaccinations might cause autism. It is possible that, in rare cases, an immunization might trigger the onset of autism symptoms due to an underlying medical or genetic condition. Autism Speaks is conducting studies on the underlying biology of autism, including studies to better understand medical and genetic conditions that are associated with autism.
Autism Speaks is funding research to develop effective treatments for individuals with autism spectrum disorders across the lifespan. We support a wide range of studies that are exploring behavioral, biomedical and pharmacological treatments. Parents need and deserve research to answer questions regarding what treatments are effective for their child.
The science team at Autism Speaks, and especially our Chief Science Officer, Geraldine Dawson wish you a Happy New Year! Please read Dr. Dawson’s letter describing autism science in 2010. In it, you’ll find descriptions of major breakthoughs, many of which were funded by grants and projects that you helped to support. We look forward to more advances to celebrate together in 2011.