If you’ve watched IACC meetings, you know that a lot of time goes into word smithing. They work out the wording that will go into the document and convey the messages with the best balance of the various viewpoints represented by the committee. Not to belittle that effort, but when the rubber hits the road, what gets into the budget is what matters most to me.
With that in mind, I’ve summarized the new objectives (long-term and short-term) that were added in 2011.
I also went through and quickly summed up the new item budget amounts. Forgive me if I missed anything, but here is what I got. First as a brief summary:
Question 1: When Should I Be Concerned?
2 new objectives. $9,635,000
Question 2: How Can I Understand What Is Happening?
no new objectives. $0
Question 3: What Caused This To Happen And Can This Be Prevented?
6 new objectives. $90,570,000
Question 4: Which Treatments and Interventions will Help?
3 new objectives. $45,500,000
Question 5: Where Can I Turn for Services?: 3 new objectives.
Question 6: What Does the Future Hold, Particularly for Adults?
no new objectives. $0
Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?
3 new objectives. $4,950,000
Total: 17 new objectives. $154,455,000
And as a more detailed summary:
Question 1: When Should I Be Concerned? Aspirational Goal: Children at Risk for ASD Will Be Identified Through Reliable Methods Before ASD Behavioral Characteristics Fully Manifest.
New Short-Term Objectives:
2011 E. Conduct at least one study to determine the positive predictive value and clinical utility (e.g., prediction of co-occurring conditions, family planning) of chromosomal microarray genetic testing for detecting genetic diagnoses for ASD in a clinical setting by 2012. IACC Recommended Budget: $9,600,000 over 5 years.
2011 F. Convene a workshop to examine the ethical, legal, and social implications of ASD research by 2011. The workshop should define possible approaches for conducting future studies of ethical, legal, and social implications of ASD research, taking into consideration how these types of issues have been approached in related medical conditions.IACC Recommended Budget: $35,000 over 1 year.
New Long-Term Objectives: None.
Question 2: How Can I Understand What Is Happening? Aspirational Goal: Discover How ASD Affects Development, Which Will Lead To Targeted And Personalized Interventions.
New Short-Term Objectives: none.
New Long-Term Objectives: None.
Question 3: What Caused This To Happen And Can This Be Prevented? Aspirational Goal: Causes Of ASD Will Be Discovered That Inform Prognosis And Treatments And Lead To Prevention/Preemption Of The Challenges And Disabilities Of ASD.
New Short Term Objectives:
2011 F. Initiate studies on at least 10 environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” This link exits the Interagency Autism Coordinating Committee Web site as potential causes of ASD by 2012. IACC Recommended Budget: $56,000,000 over 2 years.
2011 G. Convene a workshop that explores the usefulness of bioinformatic approaches to identify environmental risks for ASD by 2011. IACC Recommended Budget: $35,000 over 1 year.
2011 H. Support at least three studies of special populations or use existing databases to inform our understanding of environmental risk factors for ASD in pregnancy and the early postnatal period by 2012. Such studies could include:
Comparisons of populations differing in geography, gender, ethnic background, exposure history (e.g., prematurity, maternal infection, nutritional deficiencies, toxins), and migration patterns; and
Comparisons of phenotype (e.g., cytokine profiles), in children with and without a history of autistic regression, adverse events following immunization (such as fever and seizures), and mitochondrial impairment. These studies may also include comparisons of phenotype between children with regressive ASD and their siblings.
Emphasis on environmental factors that influence prenatal and early postnatal development is particularly of high priority. Epidemiological studies should pay special attention to include racially and ethnically diverse populations. IACC Recommended Budget: $12,000,000 over 5 years.
2011 I. Support at least two studies that examine potential differences in the microbiome of individuals with ASD versus comparison groups by 2012. IACC Recommended Budget: $1,000,000 over 2 years.
2011 J. Support at least three studies that focus on 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 via epigenetic mechanisms to alter gene expression, by 2012. IACC Recommended Budget: $20,000,000 over 5 years.
2011 K. Support two studies and a workshop that facilitate the development of vertebrate and invertebrate model systems for the exploration of environmental risks and their interaction with gender and genetic susceptibilities for ASD by 2012. IACC Recommended Budget: $1,535,000 over 3 years.
New Long Term Objectives: None.
Question 4: Which Treatments and Interventions will Help? Aspirational Goal: Interventions Will Be Developed That Are Effective For Reducing Both Core And Associated Symptoms, For Building Adaptive Skills, And For Maximizing Quality Of Life And Health For People With ASD.
New Short Term Objectives
2011 G. Support at least five studies on interventions for nonverbal individuals with ASD by 2012. Such studies may include:
Projects examining service-provision models that enhance access to augmentative and alternative communication (AAC) supports in both classroom and adult service-provision settings, such as residential service-provision and the impact of such access on quality of life, communication, and behavior;
Studies of novel treatment approaches that facilitate communication skills in individuals who are nonverbal, including the components of effective AAC approaches for specific subpopulations of people with ASD; and
Studies assessing access and use of AAC for children and adults with ASD who have limited or partially limited speech and the impact on functional outcomes and quality of life.
IACC Recommended Budget: $3,000,000 over 2 years.
2011 H. Support at least two studies that focus on research on health promotion and prevention of secondary conditions in people with ASD by 2012. Secondary conditions of interest include weight issues and obesity, injury, and co-occurring psychiatric and medical conditions. IACC Recommended Budget: $5,000,000 over 3 years.
New Long Term Objectives
2011 D. Support at least five community-based studies that assess the effectiveness of interventions and services in broader community settings by 2015. Such studies may include comparative effectiveness research studies that assess the relative effectiveness of:
Different and/or combined medical, pharmacological, nutritional, behavioral, service-provision, and parent- or caregiver-implemented treatments;
Scalable early intervention programs for implementation in underserved, low-resource, and low-literacy populations; and
Studies of widely used community intervention models for which extensive published data are not available.
Outcome measures should include assessment of potential harm as a result of autism treatments, as well as positive outcomes. IACC Recommended Budget: $37,500,000 over 5 years.
Question 5: Where Can I Turn for Services? Aspirational Goal: Communities Will Access And Implement Necessary High-Quality, Evidence-Based Services And Supports That Maximize Quality Of Life And Health Across The Lifespan For All People With ASD.
New Short Term Objectives:
2011 D. Support two studies to examine health, safety, and mortality issues for people with ASD by 2012. IACC Recommended Budget: $4,500,000 over 3 years.
New Long Term Objectives:
2011 D. Evaluate at least two strategies or programs to increase the health and safety of people with ASD that simultaneously consider principles of self-determination and personal autonomy by 2015. IACC Recommended Budget: $2,000,000 over 2 years.
2011 E. Support three studies of dental health issues for people with ASD by 2015. This should include:
One study on the cost-benefit of providing comprehensive dental services, including routine, non-emergency medical and surgical dental services, denture coverage, and sedation dentistry to adults with ASD as compared to emergency and/or no treatment. IACC Recommended Budget: $900,000 over 3 years.
One study focusing on the provision of accessible, person-centered, equitable, effective, safe, and efficient dental services to people with ASD. IACC Recommended Budget: $900,000 over 3 years.
One study evaluating pre-service and in-service training program to increase skill levels in oral health professionals to benefit people with ASD and promote interdisciplinary practice. IACC Recommended Budget: $900,000 over 3 years.
Question 6: What Does the Future Hold, Particularly for Adults? Aspirational Goal: All People With ASD Will Have The Opportunity To Lead Self-Determined Lives In The Community Of Their Choice Through School, Work, Community Participation, Meaningful Relationships, And Access To Necessary And Individualized Services And Supports.
New Short-Term Objectives: none
New Long-Term Objectives: none
Question 7: What Other Infrastructure and Surveillance Needs Must Be Met? Aspirational Goal: Develop And Support Infrastructure And Surveillance Systems That Advance The Speed, Efficacy, And Dissemination Of Autism Research.
New Short- and Long-Term Objectives
2011 N. Enhance networks of clinical research sites offering clinical care in real-world settings 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 by 2012. IACC Recommended Budget: $1,850,000 over 1 year.
2011 O. Create an information resource for ASD researchers (e.g., PhenX Project This link exits the Interagency Autism Coordinating Committee Web site) to share information to facilitate data sharing and standardization of methods across projects by 2013.
This includes common protocols, instruments, designs, and other procedural documents and should include updates on new technology and links to information on how to acquire and utilize technology in development.
This can serve as a bidirectional information reference, with autism research driving the development of new resources and technologies, including new model systems, screening tools, and analytic techniques.
IACC Recommended Budget: $2,000,000 over 2 years.
2011 P. Provide resources to centers or facilities that develop promising vertebrate and invertebrate model systems, and make these models more easily available or expand the utility of current model systems, and support new approaches to develop high-throughput screening technologies to evaluate the validity of model systems by 2013. IACC Recommended Budget: $1,100,000 over 2 years.