Autism Research Institute
Medical Research | EIN: 95-2548452 | San Diego CA
Mission: The Autism Research Institute (ARI) is the hub of a worldwide network of parents and professionals concerned with autism. ARI was founded in 1967 to conduct and foster scientific research designed to improve the methods of diagnosing, treating, and preventing autism. ARI also disseminates research findings to parents and others worldwide seeking help. The ARI data bank, the world's largest, contains over 42,000 detailed case histories of autistic children from over 60 countries. ARI publishes the Autism Research Review International, a quarterly newsletter covering biomedical and educational advances in autism research.
Our Mission: To support the health and well-being of people affected by autism through innovative, impactful research and education.
Autism Research Institute is a 501(c)(3) organization, with an IRS ruling year of 1968, and donations are tax-deductible.
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Star Rating System by Charity Navigator
Charity Navigator evaluates a nonprofit organization’s financial health including measures of stability, efficiency and sustainability. We also track accountability and transparency policies to ensure the good governance and integrity of the organization.
Exceptional
This charity's score is 92.92, earning it a 4-Star rating. Donors can "Give with Confidence" to this charity.
This score is calculated from two sub-scores:
Finance: 90.00 View details
Accountability & Transparency: 100.00 View details
This score represents Form 990 data from 2017, the latest year published by the IRS.
View this organization’s historical ratings.
Star Rated Report
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Program Expense Ratio
85.3%
The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three 990s).
This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver. Dividing a charity's average program expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
Administrative Expenses
11.2%
As reported by charities on their IRS Form 990, this measure reflects what percent of its total budget a charity spends on overhead, administrative staff and associated costs, and organizational meetings. Dividing a charity's average administrative expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
Fundraising Expenses
3.3%
This measure reflects what a charity spends to raise money. Fundraising expenses can include campaign printing, publicity, mailing, and staffing and costs incurred in soliciting donations, memberships, and grants. Dividing a charity's average fundraising expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
Liabilities to Assets Ratio
1.0%
The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990).
Part of our goal in rating the financial performance of charities is to help donors assess the financial capacity and sustainability of a charity. As do organizations in other sectors, charities must be mindful of their management of total liabilites in relation to their total assets. This ratio is an indicator of an organization’s solvency and or long term sustainability. Dividing a charity's total liabilities by its total assets yields this percentage.
Source: IRS Form 990
Fundraising Efficiency
$0.05
The amount spent to raise $1 in charitable contributions. To calculate a charity's fundraising efficiency, we divide its average fundraising expenses by the average total contributions it receives. We calculate the charity's average expenses and average contributions over its three most recent fiscal years.
Source: IRS Form 990
Working Capital Ratio
2.80 years
Determines how long a charity could sustain its level of spending using its net available assets, or working capital, as reported on its most recently filed Form 990. We include in a charity's working capital unrestricted and temporarily restricted net assets, and exclude permanently restricted net assets. Dividing these net available assets in the most recent year by a charity's average total expenses, yields the working capital ratio. We calculate the charity's average total expenses over its three most recent fiscal years.
Source: IRS Form 990
Program Expense Growth
-15.93%
We compute the average annual growth of program expenses using the following formula: [(Yn/Y0)(1/n)]-1, where Y0 is a charity's program expenses in the first year of the interval analyzed, Yn is the charity's program expenses in the most recent year, and n is the interval of years passed between Y0 and Yn.
Source: IRS Form 990
Governance
Charity Navigator looks to confirm on the Form 990 that the organization has these governance practices in place.
Sources Include: IRS Form 990
| Governance: | |
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| Independent Voting Board Members ... (More) | |
| No Material Diversion of Assets ... (More) A diversion of assets – any unauthorized conversion or use of the organization's assets other than for the organization's authorized purposes, including but not limited to embezzlement or theft – can seriously call into question a charity's financial integrity. We check the charity's last two Forms 990 to see if the charity has reported any diversion of assets. If the charity does report a diversion, then we check to see if it complied with the Form 990 instructions by describing what happened and its corrective action. This metric will be assigned to one of the following categories:
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| Audited Financials Prepared by Independent Accountant ... (More) Audited financial statements provide important information about financial accountability and accuracy. They should be prepared by an independent accountant with oversight from an audit committee. (It is not necessary that the audit committee be a separate committee. Often at smaller charities, it falls within the responsibilities of the finance committee or the executive committee.) The committee provides an important oversight layer between the management of the organization, which is responsible for the financial information reported, and the independent accountant, who reviews the financials and issues an opinion based on its findings. We check the charity's Form 990 reporting to see if it meets this criteria.
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| Does Not Provide Loan(s) to or Receive Loan(s) From Related Parties ... (More) | |
| Documents Board Meeting Minutes ... (More) | |
| Distributes 990 to Board Before Filing ... (More) | |
| Compensates Board ... (More) |
Policies
Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization has these policies in place.
Sources Include: IRS Form 990 and organization's website
| Policies: | |
|---|---|
| Conflict of Interest ... (More) | |
| Whistleblower ... (More) | |
| Records Retention and Destruction ... (More) | |
| CEO Compensation Process ... (More) | |
| Donor Privacy ... (More) Donors have expressed extreme concern about the use of their personal information by charities and the desire to have this information kept confidential. The exchanging and sale of lists for telemarketing and the mass distribution of "junk mail," among other things, can be minimized if the charity assures the privacy of its donors. Privacy policies are assigned to one of the following categories:
The privacy policy must be specific to donor information. A general website policy which references "visitor" or "user" personal information will not suffice. A policy that refers to donor information collected on the website is also not sufficient as the policy must be comprehensive and applicable to both online and offline donors. The existence of a privacy policy of any type does not prohibit the charity itself from contacting the donor for informational, educational, or solicitation purposes. (Less) |
Transparency
Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization makes this information easily accessible.
Sources Include: IRS Form 990 and organization's website
| Transparency: | |
|---|---|
| CEO Salary Listed on 990 ... (More) | |
| Board of Directors Listed on Website ... (More) | |
| Key Staff Listed on Website ... (More) | |
| Audited Financial Statements on Website ... (More) | |
| Form 990 Available on Website ... (More) |
Additional Information
Unscored
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Total Revenue and Expenses
This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.
Salary of Key Persons
Presented here are this organizations key compensated staff members as identified by our analysts. This compensation data includes salary, cash bonuses and expense accounts and is displayed exactly how it is reported to the IRS. The amounts do not include nontaxable benefits, deferred compensation, or other amounts not reported on Form W-2. In some cases, these amounts may include compensation from related organizations. Read the IRS policies for compensation reporting
Stephen M. Edelson, Executive Director
$170,834 (18.61% of Total Expenses)
Current CEO and Board Chair can be found in the Leadership & Adaptability report below.
Source: IRS Form 990 (page 7), filing year 2019
Business Master File Data
Below are some key data points from the Exempt Organization IRS Business Master File (BMF) for this organization. Learn more about the BMF on the IRS website
Activities:
Scientific research (diseases) (BMF activity code: 161)
Contact or sponsored scientific research for industry (BMF activity code: 180)
Other school related activities (BMF activity code: 059)
Foundation Status:
Organization that normally receives no more than one-third of its support from gross investment income and unrelated business income and at the same time more than one-third of its support from contributions, fees, and gross receipts related to exempt purposes. 509(a)(2) (BMF foundation code: 16)
Affiliation:
Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations). (BMF affiliation code: 3)
Data Sources: IRS Forms 990
The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage finance and accountability data from it to form Encompass ratings. Click here to view this organization's Forms 990 on the IRS website (if any are available).
Pandemic Response
Due to the unprecedented nature of the pandemic, we give charities such as this one the opportunity to share the story of COVID's impact on them. Charities may submit their own pandemic responses through their nonprofit portal.
Autism Research Institute reported being impacted by COVID-19 in the following ways:
Program Delivery
Fundraising Capacity
How COVID-19 impacted the organization's operations financially:
Donations to our organization declined by 27% in 2020. We applied for and received the Payroll Protection Program loan and thus were able to employ a full staff.
How COVID-19 impacted the organization's delivery of programs:
We leveraged technology at the onset of the Covid-19 pandemic to step up the frequency of our webinars — we offered more free, online presentations in 2020 than in any past year. Due to social distancing we had to cancel our in-person think tank. We plan to resume in-person meetings in October of 2021. Meetings with government officials were canceled and participation in international conferences was either postponed or canceled.
How this organization adapted to changing conditions caused by COVID-19:
As the situation with Covid-19 became urgent worldwide, ARI responded immediately to provide resources online. Staff facilitating our free webinar program pivoted quickly to offer new presentations focused on strategies individuals with autism and their families could use while coping at home during the pandemic. At the same time, we continued offering our regularly scheduled research updates, appropriate medical care, behavioral support, assessment, educational therapies, and adult issues. As researchers have shared their challenges in securing adequate funding to keep their investigations at a high scientific level of integrity, we awarded more than $300,000 in 2020 to fund innovative research that holds realistic promise for impacting the lives of those on the autism spectrum.
Innovations the organization intends to continue permanently after the pandemic:
New processes and initiatives initiated during the pandemic included: • Adding new members to our scientific advisory board; advisory board members provide invaluable guidance in ARI’s rigorous grant review process to assess submissions and participate in a juried review of finalists • Offering new presentations featuring highly qualified behavioral and educational professionals offering evidence-based strategies for individuals with autism and their families managing at home during extended school closures • Providing free, printable social stories and short videos on hygiene, masks, Covid-19 symptoms, online learning, and medical procedures in English and Spanish
Historical Ratings
| Date Published | Form 990 FYE | Overall Score | Overall Rating |
| Rating Version: 2.1 | |||
| 7/1/2019 | 2017 | 92.92 | |
| 6/1/2018 | 2016 | 92.92 | |
| 6/1/2017 | 2015 | 92.74 | |
| 6/1/2016 | 2014 | 92.92 | |
| Rating Version: 2.0 | |||
| 4/1/2016 | 2014 | 84.95 |  |
| 8/1/2015 | 2013 | 86.07 | |
| 7/1/2015 | 2013 | 85.22 | |
This organization received multiple star ratings within this fiscal year, due to an update to it's Accountability and Transparency data and/or the receipt of an amended Form 990. | |||
| 5/1/2014 | 2012 | 92.18 | |
| 6/1/2013 | 2011 | 99.13 | |
| 8/1/2012 | 2010 | 99.17 | |
| 5/1/2012 | 2010 | 89.36 | |
| 12/23/2011 | 2009 | 75.79 |  |
| 9/20/2011 | 2009 | 63.12 |  |
| Rating Version: 1.0 | |||
| 5/1/2011 | 2009 | 94.16 | |
| 7/1/2010 | 2008 | 98.40 | |
| 4/1/2009 | 2007 | 98.32 | |
| 11/1/2007 | 2006 | 98.04 | |
| 4/1/2007 | 2005 | 97.74 | |
| 11/1/2005 | 2004 | 98.18 | |
| 5/1/2005 | 2003 | 95.14 | |
Impact & Results
This score estimates the actual impact a nonprofit has on the lives of those it serves, and determines whether it is making good use of donor resources to achieve that impact.
Impact & Results Score
Not Currently Scored
Autism Research Institute cannot currently be evaluated by our Encompass Rating Impact & Results methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.
Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.
Do you work at Autism Research Institute? Join the waitlist for an updated Impact & Results score.
Additional Information
Unscored
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Largest Programs
Autism Research Institute reported its three largest programs on its FY 2019 Form 990 as:
$536,014
Spent in most recent FY
62%
Percent of program expenses
To support the health and well-being of people affected by autism through innovative, impactful research and education of professionals. This includes 1 conducting research, 2 organizing national and ... (More)
$300,000
Spent in most recent FY
35%
Percent of program expenses
The Autism Research Institute ARI has awarded research grants to scientific investgators worldwide. ARI prides itself in funding research that makes a difference. The funded research is aimed at inves ... (More)
$17,062
Spent in most recent FY
2%
Percent of program expenses
The autism research institute ARI is an ngo member of the United Nations. ARI collaborates with researchers, organizes conferences and think tanks, and actively consults with autism organizations worl ... (More)
Leadership & Adaptability
This score provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.
Leadership & Adaptability Score
100
out of 100
The score earned by Autism Research Institute is a passing score. This score has no effect on the organization's Star Rating.
Encompass Rating V4 provides an evaluation of the organization's Leadership & Adaptability through the nonprofit organization submitting a survey response directly to Charity Navigator.
Leadership & Adaptability Report
100
of 100 points
Mission
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s mission
ARI's mission: To support the health and well-being of people affected by autism through innovative, impactful research and education. ARI is a leading advocate for autism research and a unique resource for individuals with autism, their families, healthcare professionals, and investigators working to identify key symptoms and signs for early diagnosis and appropriate treatment. We host 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.
Source: Nonprofit submitted responses
Vision
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
ARI's vision is to reach a standard of care that supports people with autism throughout their entire lifespan. Despite research to the contrary, autism is still widely viewed as a strictly psychological disorder. Public policies and planning decisions should be guided with evidence-based information about the complex medical needs of people on the autism spectrum as well as their sensory symptoms. These conditions are often left untreated or are masked by psychopharmacological medications that complicate assessment and diagnosis. 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. Decades of research support the position that ARI has always maintained: autism is treatable. ARI continues to pioneer research, outreach, and collaborative efforts with other organizations worldwide.
Source: Nonprofit submitted responses
Strategic Goals
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: Provide funding for innovative medical research and conduct scientific meetings focused on research that holds real potential for impacting the lives of people with autism.
Goal Type: Focus on core programs to achieve mission and scale back on programs not seen as core.
Goal Two: Network with support groups around the world. Currently, ARI works with more than 200 support groups located in more than 75 countries, with the goal of improving access to evidence-based treatments.
Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.
Goal Three: Leverage technology to democratize learning about autism through free online webinars and continuing education talks. Amplifying understanding of the medical nature of autism should improve care.
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Source: Nonprofit submitted responses
Leadership Development
The nonprofit provides evidence of investment in leadership development
Describe an investment in leadership
ARI's leadership encourages a culture that provides staff and volunteers opportunities to learn and understand the complexities of autism, community considerations, and the guidance to make careful financial decisions while balancing needs. Board and staff work closely to incorporate learning opportunities in meetings and programs to develop the competencies required to sustain the organization. Formal training is highly encouraged: funding is provided continually for staff to provide professional training focused on communication, fundraising, governance, financial management, strategic planning, and program knowledge. The executive director has received certification for conducting research in compliance with institutional review board (IRB) requirements and is certified in nonprofit management. Starting in the fall of 2021, ARI's managing director will participate in the nonprofit management certificate program at a major university.
Source: Nonprofit submitted responses
Mobilizing for Mission
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
This organization mobilizes for mission in the following ways:
Strategic Partnerships
Networks of Collective Impact Efforts
Thought Leadership
Raising Awareness
Community Building
What are this organization’s external mobilizaton efforts?
Actively engaging with the autism community is at the heart of our work. Because autism affects people worldwide in every culture, reaching out to different sectors of our community and creating partnerships focused on improving the health and well-being of individuals with autism is key to facilitating change. ARI's engagement strategies include: forging community connections, understanding challenges faced in other cultures, impactfully disseminating information in a meaningful and measurable way, connecting researchers and clinicians, and fostering acceptance across all sectors of the community. We work to engage a wide range of community members to create and implement a shared vision to improve the lives of people with autism as soon as possible. Over the past five decades, we have been fortunate to connect with partners around the world. Today we are focused on working toward a community action plan that democratically pools knowledge and resources.
Source: Nonprofit submitted responses
Story of Adaptability
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
With so much happening in 2020, many may have missed the Centers for Disease Control's announcement early last year that autism now affects 1 in 54 individuals under 21 living in the U.S. This announcement again underscored the urgent need to fund biological research on the cause(s) of autism and an appropriate standard of care. The pandemic did not impede ARI's ability to sustain autism research and education support. We continued our work through the many months of lockdowns by leveraging technology with the full support of our board leadership. In 2020, we funded more than $300,000 of autism research projects with generous donor support and continued our efforts to network researchers and support groups worldwide. We expanded our online presence with free webinars, social stories, and continuing medical education webcasts by leveraging technology. We also published a book on anxiety in addition to a quarterly science newsletter, and provided Covid-19 resources for individuals and families affected by autism. Not surprisingly, we received more research applications than ever during 2020. Despite the pandemic, we engaged in a careful, rigorous process to assure we awarded funds to studies that experts determined would potentially make a difference in the health and well-being of individuals diagnosed with autism and their families. As the situation with Covid-19 became urgent worldwide in early 2020, ARI's staff worked to provide impactful resources online. Online resources during the pandemic included free online presentations offering evidence-based strategies to manage activities at home during extended school closures, free printable visual supports, videos on hygiene and medical procedures, and physician resources. Throughout 2020, we were grateful for the funding and support that allowed us to sustain innovative research while providing the latest science-based information. ARI's 2020 annual report and impact report are online at Autism.org/impact_2020/
Source: Nonprofit submitted responses
Additional Information
Unscored
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Organization Leadership
Stephen M. Edelson
Executive Director
Marvin Natowicz, M.D., Ph.D.
Chairman
Culture & Community
This score provides an assessment of the organization's engagement with the constituents it serves, a practice we term Constituent Feedback. When organizations listen to constituents, they are able to better deliver on programs and meet the needs of stakeholders. A future version of this Beacon will also assess an organization's people operations and its Diversity, Equity and Inclusion (DEI) metrics.
Culture & Community Score
100
out of 100
The score earned by Autism Research Institute is a passing score. This score has no effect on the organization's Star Rating.
Encompass Rating V4 provides an evaluation of an organization's Culture and Community by measuring its Constituent Feedback practices (see report below). Constituent Feedback data provides 100% of the basis for the initial evaluation of the Culture & Community Beacon.
Culture & Community Report
100
of 100 points
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Constituent Feedback
Full Credit
This organization reported that it is collecting feedback.
Here's how this organization is listening and learning from the people they serve:
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
With whom does your organization share the feedback you got from the people you serve?
Our staff, Our board, Our funders, Our community partners
What challenges does your organization face in collecting feedback from the people you serve?
We don't have any major challenges to collecting feedback
Briefly describe a recent change that your organization made in response to feedback from the people you serve.
In 2018, we worked with Suffolk University students and summer interns to gather information about our constituents in order to develop our theory of change and identify key barriers to establishing a standard of care for individuals diagnosed with autism. This informed our online education program for the subsequent 18 months, leading up to the Covid-19 pandemic. We continually survey our webinar attendees to collect information about topics and presenters they would like to see. Throughout the pandemic, this has been crucial to providing content that is useful to families and individuals with ASD navigating this unusually challenging time.
Methodology
Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people and communities they serve, may be more effective. We've partnered with GuideStar by Candid to survey organizations about their feedback practices. Nonprofit organizations can fill out the How We Listen section of their Candid profile to receive a rating.
Charity Navigator awards full credit for this Beacon to every nonprofit that is eligible for an Encompass Rating that completes the survey, in recognition of their willingness to publicly share this information with the nonprofit and philanthropic communities. This data is not evaluated for quality at this time. Validation will be added in future iterations of this Beacon.
Analysis and Research
Like the overall Encompass Rating System, the Culture & Community Beacon is designed to evolve as metrics are developed and ready for integration. Our partnership with Feedback Labs and Guidestar by Candid, and other partners including Fund for Shared Insight, GlobalGiving, and Keystone Accountability, enables us to launch the first version of this beacon with Constituent Feedback information collected on Candid's site.
Feedback practices have been shown to support better Diversity, Equity, and Inclusion outcomes, an essential area of assessment that we intend to further expand and develop in the future. Feedback Labs has documented several studies which indicate that beyond achieving organizational goals, nonprofits that are attentive and responsive to concerns and ideas raised by beneficiaries establish stronger relationships with the people they serve, promote greater equity, and empower constituents in ways that can help to ensure better long-term outcomes. You can find resources to help nonprofits improve their feedback practices here.
