AUTISM RESEARCH INSTITUTE

Autism is Treatable

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

Mission

To support the health and well-being of people affected by autism through innovative, impactful research and education.

Notes from the nonprofit

ARI 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 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.

Sign in or create an account to view Form(s) 990 for 2020, 2020 and 2019.
Register now

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 Research Grant Program

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

Population(s) Served
Family relationships
Health

View the Autism Spectrum Disorders: Research and Medical Treatment Implications webcast series. Learn how behavioral improvement can be achieved when underlying comorbid medical and neurological issues associated with autism spectrum disorders are addressed.

Population(s) Served
Health

For more than 25 years, ARI has worked to connect scientists and clinicians investigating the causes of and potential treatments for autism at our think tanks. ARI also funds and sponsors consensus meetings to facilitate an ongoing conversation about the latest findings and promising treatments to address medical symptoms associated with autism spectrum disorders. Thank you for all the ways you support people with autism every day, and for preserving ARI’s independent legacy through generous donor support.

Population(s) Served
Researchers

ARI offers free online webinars featuring highly qualified presenters on treatment and emerging research. Attendees may view the 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 Webinars

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Subscribers to ARI'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

Increasing

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 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 2021.

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 150 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

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 focus at ARI is to support innovative autism research while providing the latest science-based information for people of all ages on the autism spectrum. 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 ASD 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 ARI 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 2019, ARI awarded more than $287,000 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 Anxiety in Autism (2020), is a comprehensive analysis of summarizes the current perspectives and research on anxiety 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): ARI's ATEC is offered for free, online, in 23 languages.

ARI works to connect research professionals, members of the medical community, and fellow autism organizations while educating individuals and families about the latest research on ASD. 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.
  • Who are the people you serve with your mission?

    ARI is a leading advocate for autism research and a unique resource for individuals with autism, their families, healthcare professionals and investigators working to find key symptoms and signs for early diagnosis and appropriate treatment. We provide webinars and continuing medical education lectures online for free to facilitate access to evidence-based information presented by highly qualified, expert presenters. We support the research community by facilitating networking, hosting scientific meetings, and providing funding for university and center-based faculty and post-doctoral students conducting autism research through our annual grant program.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Suggestion box/email,

  • 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,

  • What significant change resulted from feedback?

    As the situation with Covid-19 became urgent worldwide, the pandemic did not impede ARI's ability to support the support the autism community. We expanded our efforts to network with researchers and support groups worldwide. We also increased our online presence with biweekly webinars for parents and professionals and continued providing continuing medical education webcasts for healthcare providers. We continually survey our webinar attendees to collect information about topics and presenters they would like to see. As the pandemic ends, we are working to continue providing new, relevant content to healthcare providers, families, and individuals with autism as they emerge from mask-wearing and social distancing and return to in-person learning and events.

  • With whom is the organization sharing feedback?

    Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    ARI has worked for more than 50 years to empower individuals with autism by democratizing access to information from highly qualified experts. In the early days, information was disseminated through printed materials, eventually evolving to in-person conferences. While there were many benefits to face-to-face events, they naturally excluded those unable to attend for financial reasons or, as is often the case for individuals and their families affected by autism, limitations on the ability to travel. In 2013, based on collected feedback, we moved our educational programs online--for free. ARI's programs now reach exponentially more people; surveys are collected immediately after every webinar, and we use that feedback to invite qualified presenters on topics the community selects.

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

    We collect feedback from the people we serve at least annually, 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,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

AUTISM RESEARCH INSTITUTE
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our 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.

Operations

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

lock

Connect with nonprofit leaders

Subscribe

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.

lock

Connect with nonprofit leaders

Subscribe

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 07/29/2022
SOURCE: Self-reported by organization
Board chair

Marvin Natowicz, MD

Cleveland Clinic

Term: 2018 - 2021

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

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 7/29/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

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.