The Interagency Autism Coordinating Committee (IACC) recently released their annual report on the portfolio of autism research funding for 2009. The report reveals that over $314 million dollars was spent on autism research from both federal and private sources. This report comes at a crucial time when the Combating Autism Act of 2006 (CAA) is under consideration for renewal. The CAA instigated the formation of the IACC which helps guide the appropriate use of federal funds for autism research.
So what was funded in 2009? The IACC breaks down funding into seven categories that stem from the key questions in the IACC’s strategic plan. The questions are listed in the figure below. In 2009, almost one-third of the funding (32% of total) went toward identifying risk factors for autism spectrum disorders (ASD).This category also received the greatest funding in 2008. The second and third most funded categories were investigations of the underlying biology of ASD (20%) and the development of treatments or interventions (20%). The categories receiving the least funding were services research (3%) and studies on autism during adulthood (<1%). The IACC noted these categories as special targeted areas for increasing funded projects in future years.
2009 included significant funding from the American Recovery and Reinvestment Act (ARRA) that Congress authorized earlier in the year. The National Institutes of Health used Recovery Act money to fund autism research with $64 million dollars that supported 141 new projects, which accounted for 33% of NIH’s autism research in 2009. The ARRA grants were targeted to address the IACC’s strategic plan questions and an analysis of those grants separately looks similar to the overall portfolio of grants. The greatest percentage of funding was allocated for studies of risk and underlying biology and least for services studies and understanding adult outcomes. The ARRA infusion of federal funds significantly increased the dollar amount of federal funding for autism research over 2008.
Overall, funding for autism projects increased by 21% from 2008 to 2009, much of this due to the ARRA funding.
The analysis also included a breakdown of funding by federal and private organizations. By far NIH supported the greatest number of projects (516) and granted the most money ($197 million) overall. The second and third biggest supporters of autism research were private organizations. The Simons Foundation granted $51 million over 98 research projects in 2009. Autism Speaks supported 220 projects with $23 million dollars raised from generous donations of families and loved ones who want to see better lives for all who struggle with ASD.
These numbers show the impact that foundations such as Autism Speaks can have on the direction of autism research as they typically support ideas deemed too “risky” for NIH funding. Indeed, a recent analysis conducted on Autism Speaks’ grants showed that for each dollar invested in research, investigators leveraged $10 more in additional funding. Researchers were able to use our early investment to further their studies and advance our collective understanding of autism.
Autism Speaks’ Chief Science Officer, Geri Dawson, Ph.D., says “Although we are pleased that funding increased for ASD research, we are still in great need of increased funding so we can make faster progress. Notably, the current IACC report shows that more funding needs to be directed toward research on adults and services. Basic scientific discoveries need to be translated into real world solutions that impact the daily lives of people struggling with autism.”
The timing of this report is critical. As previously mentioned, the CAA is now up for renewal. Without this support we would not have the IACC , which brings together stakeholders from the federal government, private research organizations, and community leaders to consider the needs of the community as a whole so we can best invest research dollars to solve pressing questions that actually impact the lives of real people.
Last month, new reauthorization bills were introduced with strong bi-partisan backing in the Senate by Senators Robert Menendez (NJ-D) and Mike Enzi (WY-R), and in the House by Autism Caucus Co-chairs Rep. Chris Smith (NJ-R) and Rep. Mike Doyle (PA-D). President Obama has pledged to sign a CAA reauthorization into law this year. The Combating Autism Reauthorization Act of 2011 (CARA) would extend the CAA – which includes funding for critical research, services and treatment, and contains measures to ensure cost-efficient planning and coordination of these efforts – for three years at current funding levels.
As Autism Speaks co-Founder Bob Wright stated last month upon the introduction of CARA, “Bi-partisan support for any legislation today is rare, and reflects our elected leaders’ understanding of the severity of the challenges we face. It is imperative that CAA is reauthorized, so that the vital work in research, treatment and services can continue.”
The numbers in this report are just one way to quantify the investments that are being made in our understanding of autism spectrum disorders, from risk factors to the effective delivery of services. We will continue to keep watch and advocate for more research that is aimed at improving lives today and transforming lives tomorrow.
The entire report is available for download here.
This post reflects the remarks Lindsey Nebeker made at the April 11 meeting of the Interangency Autism Coordinating Committee (IACC). Lindsey and her brother both share an autism diagnosis.
Members of the Committee: I would like to thank you for providing the opportunity for me to share my testimony with you today.
My name is Lindsey Nebeker, and I am personally representing myself as an individual with autism.
Let us open an additional conversation into the topic of safety.
As I have shared in my past comments to the Committee, I have a younger brother, James, who also has autism. Although he and I share the same diagnosis, our experiences growing up and where we have ended up sets us far apart. Due to the severity of James’ condition, his needs for services have been far greater. In 2000, at the age of 16, James was placed in a group home under the care of full-time staff, due to my parents’ aging and limitations regarding their strength to care for him.
As of now, in his current residential placement, James appears in good physical health and my family trusts that he is being treated well by his caretakers.
So what would lead me to still be concerned?
When my parents die, I will become my brother’s legal guardian. I will be holding the responsibility of ensuring his care, his safety, and his well-being. As a woman in my 20s, I am already planning how he will be spending the rest of his life. I am anticipating the possibility of his government funding being cut, and the possibility of him being placed somewhere else.
James’ home is nearly 2000 miles away. This makes it extremely difficult for me to be able to monitor what goes on in his home or how his days are spent … and it goes beyond his tendencies to wander.
Safety does not just refer to protecting the adult while outside the home. Safety also refers to how an adult is treated inside the home.
The New York Times recently published an article on a yearlong investigation into more than 2,000 state-run homes in New York. During the investigation, The Times retrieved a long list of accounts of sexual abuse, physical abuse, discrimination, and other dehumanizing behavior: around 13,000 allegations of abuse in 2009 alone. Times that by 50 for each of the 50 states, and you have a possibility of 650,000 incidents (give or take) of abuse to adults with developmental disabilities (including autism) across the United States in 2009. Fewer than 5% of those incidents got reported to law enforcement.
In most of these cases, “Employees who sexually abused, beat or taunted residents were rarely fired, even after repeated offenses, and in many cases, were simply transferred to other group homes run by the state.” (New York Times)
It would not be surprising to hear if a high percentage of these incidents involved individuals who do not speak or has a difficulty in communicating. As one of the law enforcement officials admits during an interview: “It’s a hard road without a confession by the defendant.” (New York Times)
In spite of the incidents, there are many caretakers who have passionate hearts, perform the best that they can, and treat their adult clients with respect. They are often underpaid for their efforts and their service. However, many can still benefit from effective training protocols and learn better approaches to respecting the needs of adult clients with autism and other developmental disabilities.
How can research help this issue? Two ways:
First, research can help determine what training is most effective and what needs to be done to establish stricter requirements for the employees who work in state-run and private-run residential programs. Residential programs can also train employees on the importance of integrating community and inclusion-based activities as an essential tool in living a full productive life for individuals with disabilities. A list of specific areas of focus are provided in the written copy of my statement provided to the Committee.
Second, research can help the individuals with limited or no language skills communicate more effectively, so in the event they do run into a violation of their personal safety, they will know how to communicate it to loved ones, law enforcement or other authority. Effective communication is also a crucial component in building self-determination.
Until there are additional breakthroughs made in effective communication methods, James (who is still unable to speak or use a communication device) is not able to tell my parents nor myself what has occurred during his day, how his staff treats him, or if his rights are violated. While we have no reason to believe that James is in any kind of current danger, it is an issue that will always concern us as long as he lives.
I would like to close with the following thought:
If there is one thing that unites us as a community, it is this: providing the best for our individuals with autism, and ensuring their happiness.
Ideally, research that is dedicated to ensuring a successful transition for adults with autism into the community will replace the need for institutions and group homes. But for now, we must find a way to ensure the adults living in these residential programs their safety, their sense of purpose, and sense of belonging.
There is no reason, given the right accommodations and support, that every individual can’t participate in being a citizen: the thing that defines us as people who have a role in society. As an individual living with autism, I can testify to that.
What connects my brother, myself and all of us is that we are human. And as humans, we have the capability to recognize when we are of worth and when we feel belonged. The least we can ask is our basic human rights: to be treated with dignity and respect. But it is nearly impossible for a person to know their own self-worth when that person is not surrounded by others who can teach that person their rights to dignity, respect, and self-worth; to ensure the thousands of adults in residential placement a full quality of life.
So I encourage you, as we continue our conversation on many important issues, regardless of the issue, that you continue to remember your influence and your roles as members of the Committee, and the potential you hold for initiating and providing those who will become adults and those who are already adults one step closer to achieving what could very well be the most important basic human right: the right to have a voice … a voice which holds the key to full inclusion in the human race.
April 11, 2011
In honor of World Autism Awareness Day, the Interagency Autism Coordinating Committee (IACC) has released its Summary of Advances for 2010. Twenty articles that were published in 2010 were selected across each of the five areas of focus on the IACC strategic plan. Autism Speaks’ Chief Science Officer, Geri Dawson, Ph.D., is a member of the committee and was pleased to see advances across the range of autism research and said, “It is encouraging to see the diversity of scientific advances that were made in 2010.“ Dawson noted, “studies that were deemed especially noteworthy included environmental research, genetic discoveries, new early intervention approaches, and assessment of medical conditions such as GI problems and mitochondrial dysfunction.”
Autism Speaks’ supported research featured prominently in the list, with seven of the 20 papers identified as top advances receiving Autism Speaks support. These included advances in the diagnosis of autism with Dr. Sally Ozonoff’s prospective study of the earliest signs of autism. The committee recommended two reports that advance our understanding of the biology of ASD – the consensus statements on GI disorders and a report on mitochondrial function suggesting that it may be more common that previously suspected. Two papers advancing our understanding of risk factors of ASDs included a study of blood mercury concentrations in children and also the Autism Genome project’s phase II results. Finally, two papers reporting on treatment advances in ASD were included. A study by Dr. Dawson involving a randomized controlled trial of an early intervention method was highlighted, as was an intervention delivered by caregivers that focused on developing better joint attention skills.
The list of advances comes at a time of celebration and reminds us of how much has happened in 2010, yet we are well aware of how far we need to go. Dawson remarked, ”While it is encouraging to see the advances made in 2010, it is important that we continue to advocate for increased federal funding for autism research. This is a step in the right direction but important issues remain to be addressed regarding the causes of autism and, more importantly, more effective ways of treating autism throughout the lifespan.”
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.
The Interagency Autism Coordinating Committee (IACC) met on Tuesday, December 14, at the Bethesda Marriott in Bethesda, Md. This is the fifth time the Full Committee has met in 2010. The IACC has made significant progress in the past year in the following areas: 1) releasing the 2010 Strategic Plan for Autism Research (February 3); 2) publishing the 2008 Portfolio Analysis Report (January 19); 3) releasing the 2009 Summary of Advances in ASD Research; 4) hosting first annual IACC Services Workshop, Building a Seamless System of Quality Services & Supports Across the Lifespan (November 8); and 5) updating the 2011 Strategic Plan for Autism Research.
IACC Chair and NIMH Director Thomas Insel, M.D. opened the meeting with a presentation on research developments since the last IACC meeting. Dr. Insel reported that autism was a “hot topic” at the recent Society for Neuroscience meeting with a 30 percent increase in abstracts focused on autism. The meeting also included a Public Symposium, Autism: Progress and Prospects, chaired by Gerald Fischbach, M.D., Scientific Director, Simons Foundation Autism Research Initiative.
The IACC meeting agenda was devoted primarily to consideration of updates to the Strategic Plan for Autism Research. Members of the Strategic Planning Subcommittee presented the IACC with modifications to the existing plan with appendices of new research advances, funding gaps and new research opportunities for each section of the plan. The Committee approved most of the recommendations made by the Subcommittee.
The Subcommittee’s recommendations included objectives to better understand wandering and fever in persons with ASD to Question 2 of the plan.
The Committee voted to retain the title of Question 3, “What caused this to happen and how can it be prevented?” Updates to Question 3 include reference to a Workshop “Autism and the Environment: New Ideas for Advancing the Science,” held September 8, 2010, which was co-sponsored by Autism Speaks and NIEHS. The meeting involved environmental scientists who have successfully identified environmental risk factors for other conditions, such as Parkinson’s Disease, in an effort to develop better strategies for discovering environmental risk factors contributing to the etiology of ASD. The committee voted to accept new research objectives, including in the following areas: epidemiological studies that take advantage of special populations or expanded existing databases to inform our understanding of environmental risk factors for ASD, to include adverse events following immunization (such as fever and seizures), mitochondrial impairment, and siblings of children with regressive ASD; and the role of epigenetics in the etiology of ASD, including studies that include assays to measure DNA methylations and histone modifications and those exploring how exposures may act on maternal or paternal genomes.
Recommendations for Question 4 were also accepted. These included research objectives to assess the effectiveness of interventions and services in broader community settings by 2015; to study interventions for nonverbal individuals with ASD; and to focus on research on health promotion and prevention of secondary conditions in people with ASD. Secondary conditions of interest include overweight and obesity, injury, and co-occurring psychiatric and medical conditions.
The IACC’s review of the Subcommittee’s recommendations for Question 5 included extensive discussion about how the IACC should address issues related to mortality, safety, and health within the IACC. New research objectives were approved to support research on health and safety issues leading to mortality.
The Question 6 recommendations on future needs of adults highlighted the urgent need for additional scientific research specific to this group. In 2010, several national advocacy groups devoted private resources to initiatives on adult services that have been brought to the IACC’s attention.
Finally, Question 7 is focused on the infrastructure and surveillance needs. The committee noted concern in funding availability for these needs. New research objectives were added. These included objectives to establish a robust network of clinical research sites that can collect and coordinate standardized and comprehensive diagnostic, biological (e.g. DNA, plasma, fibroblasts, urine), medical, and treatment history data that would provide a platform for conducting comparative effectiveness research and clinical trials of novel autism treatments; and to create an information resource for ASD service providers, researchers, families, and people with an ASD which serves as a portal to obtain the most recent evidence-based reviews and plans for intervention, services, and support.
“Public input has been critically important to the Strategic Planning process,” says Geraldine Dawson, Autism Speaks’ chief science officer and IACC member. “Based on feedback received from both consumer and professional stakeholders during the Request for Information phase, the recommended Strategic Plan will include new objectives that enhance the focus on environmental factors and lifespan issues affecting adolescents and adults living with autism.”
The afternoon session began with the Public Comments portion of the meeting. Ms. Idil Abdull, parent advocate and co-founder of the Somali American Autism Foundation, thanked the IACC for its decisive action on exploring the Somali autism issue and urged it to sustain this effort. Also presenting during Public Comments was Mrs. JaLynn Prince, President and Founder of the Madison House Foundation, based in Montgomery County, Md. The mission of the Madison House Foundation is to identify the lifelong needs of adults with autism and fill those needs through education, awareness, and advocacy. Mrs. Prince encouraged the IACC to explore the expertise of organizations like the Madison House which have been dealing with adult service issues in local communities throughout the country.
The agenda also included several updates on issues raised during recent meetings. At the October meeting, the IACC asked Autism Speaks, NIEHS and CDC to investigate issues raised concerning the Somali population in Minnesota. Coleen Boyle, Ph.D., Acting Director, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention and IACC Member, Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences, and Autism Speaks’ chief science officer and IACC member Geraldine Dawson, Ph.D. provided an update on their efforts with respect to this issue. It was reported that collectively $350,000 has been committed to begin to study this issue, with Autism Speaks contributing $100,000 to this effort.
In response to a presentation on Wandering and Autism at the October meeting, the IACC created a subcommittee on safety issues the first task of which is to write the secretary of HHS on the recommendations that were made during the meeting. Lyn Redwood, R.N., M.S.N. Co-Founder and Vice President, Coalition for Safe Minds and Co-chair, Safety Subcommittee, and Alison Singer, President, Autism Science Foundation and Co-chair, Safety Subcommittee, reported on the Subcommittee’s recent meeting. The IACC authorized the Subcommittee to proceed with its information gathering in order to finalize the letter to the secretary. To inform this letter, the Subcommittee’s representatives will meet with the Departments of Education and Justice and will develop a Request for Information (RFI) on wandering. It was also announced that Autism Speaks and the Autism Science Foundation will fund a study utilizing the Interactive Autism Network (IAN) on this issue.
Services Subcommittee Co-chairs Ellen W. Blackwell, M.S.W., Centers for Medicare and Medicaid Services and Lee Grossman, President and CEO, Autism Society, reported on their Services Workshop on November 8 and subsequent subcommittee meeting. The goal of the workshop was to determine a set of recommendations to make for the Secretary of HHS. The Subcommittee is using slides from the workshop to inform the recommendations to be sent to the Secretary. The Subcommittee believes another workshop on services will be necessary next year.
Finally, the IACC solicited the input of IACC member Alan E. Guttmacher, M.D., Director Eunice Kennedy Shriver National Institute of Child Health and Human Development, on the implications of the proposed addition to Question 1 of the Strategic Plan to conduct five studies on the ethical, legal and social implications of autism screening research, including at least one study on the implications of potential future genetic testing. The committee agreed to look at what other diseases have done in this area and will convene a workshop next year.
The IACC is scheduled to meet again on January 18 and will finish its update of the Strategic Plan’s Introduction section at that meeting before approving the plan.
“Rest assured, you have the attention of the President and the White House”
My first meeting as a public member of the IACC
By Geri Dawson, Chief Science Officer
Last Friday was my first meeting as a public member of the Interagency Autism Coordinating Committee (IACC). It was a particularly momentous meeting for the IACC because, for the first time, Kathleen Sebelius, Secretary of the Department of Health and Human Services (DHHS), attended the meeting along with two colleagues from DHHS, Howard Koh, Assistant Secretary for Health, and Henry Claypool, Director, Office on Disability. In addition, two representatives from the White House, Michael Strautmanis, Chief of Staff to the Assistant to the President for Intergovernmental Relations and Public Engagement, and Kareem Dale, Special Assistant to the President for Disability Policy, attended the meeting. Moreover, Francis Collins, Director of the National Institutes of Health, addressed the IACC. It was an auspicious beginning to my experience on this committee, to be sure.
The Secretary began by welcoming five new members to the IACC, which included Gerald Fischbach from the Simons Foundation, Marjorie Solomon from the MIND Institute at UC Davis, Ari Ne’Eman from the Autism Self-Advocacy Network, Denise Resnik from the Southwest Autism Research and Resource Center, and me, representing Autism Speaks. Secretary Sebelius began by telling the committee members that we “need to leverage all of our assets” and “work together across all agencies” to address the “alarming increase in autism rates” as well the need for “top notch research and services.” She promised that she will be taking very seriously the recommendations that come from the IACC. She told the committee, “Rest assured, you have the attention of the President and the White House.” Kareem Dale reiterated these themes, remarking that the White House’s goal and mission are to give autism issues the “highest level of attention.”
These encouraging remarks were followed by those of Dr. Collins, who also previously served as the Director of the NIH Genome Institute and the Human Genome Project. He began by stressing the need to understand the causes of autism and ways of preventing and treating this challenging condition. “I get the sense of urgency,” Collins remarked, a point he said was especially made clear to him during an earlier meeting he held this year with parents and members of autism advocacy groups. “Parents are never happier than their saddest child,” he remarked, “and if we can help with our resources, that’s what we want to do.” He noted that the IACC is distinguished among other government committees by its membership and activism, a fact that reflects the passion and urgency of the autism community. Dr. Collins shared his enthusiasm for the important role of genetics in the discovery of causes and treatments for autism, noting in particular, the exciting results of the Novartis clinical trial that was featured on the front page of last Friday’s New York Times. He stated that he didn’t think that the whole story is DNA, however, and that environmental factors and their interaction with genetic factors play key roles in understanding the causes of autism. In this regard, he described the National Children’s Study, a huge NIH effort to follow 100,000 children from conception through adulthood to discover how environmental exposures are influencing children’s health outcomes. He explained that autism is one of the stronger reasons for investing in this expensive effort. He also noted that research on behavioral interventions for ASD continue to be important. The necessity to avoid conservatism in the types of grants NIH funds, especially during hard economic times, was highlighted. Collins encouraged “out of the box” ideas that can open new perspectives and directions for autism research. He ended by again expressing his awareness of the great suffering that is experienced by many people with autism spectrum disorders and their families, ending with a quote from Winston Churchill – “If you are going through hell, keep going.” “Let’s all keep going,” he urged the IACC members, “because on the other side, there will be more understanding and more hope.”
I had the pleasure of giving the first talk after Dr. Collins. I reported on the activities and achievements of Autism Speaks’ Autism Treatment Network (ATN). I described the goals of the ATN, which include improving access and quality of medical care for children with ASD, developing evidence-based treatment guidelines, providing clinician training in the medical treatment of ASD, and conducting research on medical treatments. I described the network of 14 academic centers that comprise the ATN, which provides care for over 5,000 children (with over 2,000 now part of the ATN patient registry). Based on data collected through the registry, I described the common kinds of medical issues that many children with ASD face, including GI problems, sleep disturbances, neurological conditions, among others. I also described the vision for the ATN, which is to increase the number of centers nationwide, improve quality of care through training and guideline development, and provide empirical support for novel and effective treatments for ASD. After my presentation, several people remarked that they were not previously aware of the extent to which medical conditions affect the quality of life for individuals with ASD. To read more about the other presentations at last Friday’s IACC meeting, click here.
It is an honor to serve people with autism and their families on the IACC. I will do my best to represent all those who are suffering because of autism. My first charge will be to do everything I can to persuade our government to keep the promises made at Friday’s meeting of the IACC.