PLATINUM2023

AUTISM RESEARCH INSTITUTE

Autism is Treatable

San Diego, CA   |  https://www.autism.org

Mission

The mission of the Autism Research Institute is to support the health and well-being of people affected by autism through innovative, impactful research and education.

Notes from the nonprofit

The Autism Research Institute exists to compel the autism community to foster research and evidence-based treatments with the potential to improve the health and well-being of people with autism. Ultimate Impact: Increased awareness of medical and sensory symptoms will familiarize caregivers, providers, and people with autism and related disabilities about the benefits of a higher standard of care resulting in improved health and well-being while fostering demand for better research that demonstrates consistent, measurable improvements in physical health of people with autism.

Ruling year info

1968

Executive Director

Stephen M. Edelson PhD

Main address

4182 Adams Ave

San Diego, CA 92116 USA

Show more contact info

EIN

95-2548452

NTEE code info

Autism (G84)

Autism (H84)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Despite research to the contrary, autism is still widely viewed as a strictly psychological disorder. Public policies and planning decisions should be guided with complete information about the complex medical needs of people on the autism spectrum as well as the sensory symptoms be left untreated or may be masked by psychopharmacological medications that complicate assessment and diagnosis.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Scientific Autism Research Grant Program

The Autism Research Institute conducts, sponsors, and supports autism research on the underlying causes of, and treatments for, Autism Spectrum Disorders.

Population(s) Served
Family relationships
Health
Researchers

These autism presentations, focused on behavioral improvement that can be achieved when underlying comorbid medical and neurological issues associated with autism spectrum disorders and related developmental disabilities are addressed, are available to professionals and the public free of charge.

Population(s) Served
People with disabilities
People with diseases and illnesses
Researchers

For more than 25 years, the Autism Research Institute has worked to connect scientists and clinicians investigating the causes of and potential treatments for autism at our think tanks. The Autism Research Institute also funds and sponsors autism consensus meetings to facilitate an ongoing conversation about the latest findings and promising treatments to address medical symptoms associated with autism spectrum disorders and related neurodevelopmental disabilities.

Population(s) Served
Researchers
Families
Parents
People with disabilities

The Autism Research Institute offers free online webinars featuring highly qualified presenters on evidence-based treatment and emerging research about autism and related developmental disabilities. Attendees may view the autism presentations live or watch the playback at a future date.

Population(s) Served
Family relationships
Health

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of list subscribers

This metric is no longer tracked.
Totals By Year
Population(s) Served

Family relationships, People with disabilities, People with diseases and illnesses

Related Program

Free Online Autism Webinars

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Subscribers to the Autism Research Institute's monthly enewsletter.

Number of new organizations signing on as collaborators

This metric is no longer tracked.
Totals By Year
Population(s) Served

Family relationships

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

ARI started a new international outreach program in 2020 reaching 110 parent support groups in 52 countries.

Number of community events or trainings held and attendance

This metric is no longer tracked.
Totals By Year
Population(s) Served

Family relationships, Health

Related Program

Free Online Autism Webinars

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Total online learning hours through our online webinars and continuing medical education lectures in 2022.

Number of evaluations conducted

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Annual submissions of ARI's free, online Autism Treatment Evaluation Checklist. On average we receive nearly 200 per day. The checklist is available in 24 languages.

Average number of years of formal education for teachers/instructors

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with disabilities, Caregivers, Families, Adults, Children and youth

Related Program

Continuing Medical Education for Autism

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our mission at The Autism Research Institute is to support innovative autism research while providing the latest science-based information for autistic people of all ages. We do this through our annual and regional think tanks, in-person and online educational events and courses, free webinars, and by funding the studies that hold the most promise for making a difference in the lives of people with autism.

While the causes of autism remain unclear, recent scientific advances challenge the traditional view of autism as an untreatable disease — as one that is genetically hardwired. These developments support the position that the Autism Research Institute has always maintained: autism is treatable. ARI continues to pioneer research, outreach, and cooperative efforts with other organizations worldwide.

Provide Funding for Cutting-Edge Research: In 2022, ARI awarded more than $450,000 in grants to scientists whose work will have a direct impact on the lives of individuals diagnosed with ASD. Funds supported research in immune, gastrointestinal, metabolic, neurologic, and sensory issues.

Convene Scientists and Clinicians Face-to-Face: Since 1995, the Autism Research Institute has brought together experts at its annual scientific think tank meetings to address novel questions and discuss issues related to promising interventions. ARI also funds and sponsors consensus meetings to facilitate ongoing discussion about the latest findings and approaches to understand and treat medical and behavioral symptoms.

Create Free Online Continuing Education on Autism for Physicians and Other Healthcare Providers: Informing physicians about appropriate standards of care is crucial to our mission — we continue to offer complimentary CME-certified online education to amplify understanding of the medical nature of the disorder. Learn more at ARI-CME.org

Collaborate to Support Tissue Donation: Research on brain tissue is needed to understand the underlying causes of autism. ARI supports the University of Maryland’s Brain Tissue Bank and the gastrointestinal depository at Massachusetts General in Boston.

Compile Precious Data: Since the mid-1960s, ARI has been collecting data regarding developmental history and symptoms. ARI is involved in data collection for several major research projects.

Facilitate Expert Consensus Reports: ARI is facilitating the collaboration among distinguished researchers and clinicians to write summary reports on known findings as well as areas requiring further investigation regarding diverse aspects of autism, including, gastrointestinal, genetic issues, immunology, metabolism, nutrition, neurology, neuropathology, and sleep.

International Outreach; Translating Resources: ARI is a Non-Governmental Organization (NGO) of the United Nations providing educational resources and tools for users around the globe. International outreach includes targeted efforts in Eastern Europe and South America.

Democratize Learning Through Online Webinars: ARI makes an effort to provide presentations that are unbiased and broad-reaching, and to assist families and professionals in making informed treatment decisions.

Publish Articles and Books on Critical Topics: ARI has published a quarterly science newsletter, Autism Research Review International since 1987. Our latest book, "Understanding and Treating Sleep Disturbances in Autism" (2022), is a comprehensive analysis of summarizes the current perspectives and research on sleep in autism including neurology, medical, immunology, gastrointestinal, nutrition, sensory, and behavioral. The first book in the series, "Understanding and Treating Self-Injurious Behavior in ASD," was published in 2016.

Autism Treatment Evaluation Checklist (ATEC): the ATEC is offered for free, online, in 25 languages.

We work to connect research professionals, members of the medical community, and fellow autism organizations while educating individuals and families about the latest research on autism. Activities include free online education, scientific think tanks, and facilitation of publications and consensus reports focused on advancing evidence-based care emphasizing the benefits to core symptoms that can be realized when underlying illness is addressed.

Established in 1967 by psychologist and renowned father of modern autism research Dr. Bernard Rimland, ARI was founded to pioneer in research, outreach, and cooperative efforts with other organizations worldwide. For its first 40 years, ARI devoted its work to conducting research, and to disseminating the results of research, on the triggers of autism and on methods of diagnosing and treating autism.

Over the past decade, ARI has made new inroads toward encouraging, integrating, and supporting medical/biomedical, sensory, and behavioral research. We began funding more cutting-edge exploratory research and began to offer online webinars for parents and professionals, which led to producing continuing medical education webcasts specifically developed for physicians. Today, we continue publish "The Autism Research Review International," our quarterly scientific journal which has been in print since 1986, and to organize an expanding program of national and regional scientific think tanks. In addition, we have written numerous articles and editorials, edited books, and lectured on all three areas of research worldwide.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

AUTISM RESEARCH INSTITUTE
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

AUTISM RESEARCH INSTITUTE

Board of directors
as of 08/25/2023
SOURCE: Self-reported by organization
Board chair

Marvin Natowicz, MD, PhD

Cleveland Clinic

Term: 2018 - 2024

Harland Winter, MD

Massachusetts General Hospital, Harvard Medical School

James Walker

Adams Street Partners

Kenneth Sassower, M.D.

Massachusetts General Hospital, Harvard Medical School

S. Jill James, Ph.D.

University of Arkansas for Medical Sciences

Robert Hendren, D.O.

University of California, San Francisco Medical Center

Kelly Barnhill, MBA, CN, CCN

Johnson Center for Child Health & Development

Wenn Lawson, PhD

Teaching Fellow, Birmingham University, UK; Research Officer MaQuarrie University, NSW. Australia; and University of Western Australia, and Curtin University, WA | Member of the Australian Autism Research Council, the Australian Association of Social Work (AASW), and the Australian Psych. Society

Margaret Bauman, MD

Boston University School of Medicine

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 5/16/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

 

Sexual orientation

Disability

Equity strategies

Last updated: 07/29/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.