Autism Society of America HQ
Improving the Lives of All Affected by Autism
Programs and results
What we aim to solve
In the last half-century the prevalence of autism has grown exponentially. Over 50 years ago when the Autism Society of America was formed, the autism incidence rate exceeded 1 in 5,000. As of April 2020, nearly 1 in 54 Americans are on the autism spectrum, meaning it's likely you know someone who loves someone with autism. Individuals on the spectrum can live full lives and make profound contributions to society. But when a family first embarks on its journey with autism, it can feel uncertain and confusing. The right assistance can be hard to find. Information conflicts and services are often unaffordable or even non-existent. In fact, lifetime care can cost up to $3.2 million for one individual. This year, nearly 500,000 autistic individuals are transitioning to adulthood in the United States, while approximately 88,000 individuals are on state waiting lists, hoping to receive adult housing services.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Education and Awareness
The Autism Society provides easy-to-understand, practical information related to the autism spectrum for a broad audience on a wide range of educational topics to empower people to more effectively advocate and obtain supports. We work to educate autistic individuals, their loved ones, professionals from multiple disciplines, and the public at large about autism and issues within the autism community in order to foster acceptance and appreciation of individuals on the autism spectrum as the valued members of our community that they are. Key efforts in this area are outreach materials, programs, toolkits for National Autism Awareness Month in April, and a wide variety of published materials and website resources.
Advocacy and Public Policy
The Autism Society’s public policy and advocacy efforts have continually improved the lives of those affected by autism. At the national level, the Autism Society supports the needs of the millions of individuals impacted by autism in America and their family members. At the state level, the Autism Society helps its Affiliate Network advancing advocacy efforts at the state level to advance the wellbeing of individuals and families impacted by autism. Each year, volunteers and staff from around the nation come to Washington, DC to meet with their national elected officials and to promote a responsive and accountable national legislative agenda to advance the quality of life of all on the autism spectrum.
Autism Core Services
The Autism Society offers support to individuals and families affected by autism with information and referral services provided by trained professionals through its National Contact Center and Autism Source, a unique national database that aligns people with support and services in their local communities. The Autism Society has also developed standards of performance for its local community-based network of over 80 affiliates and provides oversight and support to those affiliates to advance the quality and efficacy of services people receive at the local level. The Autism Society also has specific initiatives to advance inclusiveness in the community for those affected by autism, including its Safe and Sound, Inclusive Faith and Sensory Friendly Films initiatives.
Where we work
External reviews

Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of Facebook followers
This metric is no longer tracked.Totals By Year
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Number of clients served
This metric is no longer tracked.Totals By Year
Population(s) Served
Age groups, Family relationships, People with intellectual disabilities, People with learning disabilities, People with other disabilities
Type of Metric
Output - describing our activities and reach
Direction of Success
Holding steady
Context Notes
In 2020, we served over 1,000,000 people on the autism spectrum and their families by providing autism information, resources, advocacy and support.
Number of community events or trainings held and attendance
This metric is no longer tracked.Totals By Year
Population(s) Served
Family relationships, Age groups, People with intellectual disabilities, People with learning disabilities, People with other disabilities
Related Program
Education and Awareness
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Attendance in 2020: approx. 125,000 Attendance in 2019: approx. 160,000 Attendance in 2018: approx. 157,000; Attendance in 2017: approx. 100,000+
Number of referrals to resources offered
This metric is no longer tracked.Totals By Year
Population(s) Served
Age groups, Family relationships, People with intellectual disabilities, People with learning disabilities, People with other disabilities
Related Program
Autism Core Services
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
In 2020 the COVID-19 pandemic had a significant impact on outreach capabalities.
Number of groups/individuals benefiting from tools/resources/education materials provided
This metric is no longer tracked.Totals By Year
Population(s) Served
Age groups, Family relationships, People with intellectual disabilities, People with learning disabilities, People with other disabilities
Related Program
Education and Awareness
Type of Metric
Outcome - describing the effects on people or issues
Direction of Success
Increasing
Context Notes
In 2020, there were approximately 275,000 people served through educational programs and service events, a 12% increase over 2019
Number of donations made by board members
This metric is no longer tracked.Totals By Year
Type of Metric
Other - describing something else
Direction of Success
Increasing
Number of meetings with policymakers or candidates
This metric is no longer tracked.Totals By Year
Related Program
Advocacy and Public Policy
Type of Metric
Outcome - describing the effects on people or issues
Direction of Success
Increasing
Context Notes
In 2020, the number of meetings was impacted by COVID-19 although virtual meetings were held over 3,000 National staff hours are still committed to public policy.
Number of clients participating in support groups
This metric is no longer tracked.Totals By Year
Population(s) Served
Caregivers, Families, People with disabilities
Related Program
Autism Core Services
Type of Metric
Output - describing our activities and reach
Direction of Success
Holding steady
Context Notes
Support group attendance in 2020 was significantly impacted by COVID-19.
Number of volunteers
This metric is no longer tracked.Totals By Year
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Number of phone calls/inquiries
This metric is no longer tracked.Totals By Year
Population(s) Served
Age groups, Family relationships, People with intellectual disabilities, People with learning disabilities, People with other disabilities
Related Program
Autism Core Services
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
The Autism Society vision identifies three keys to improving the lives of those affected by autism:
1. Maximize Quality of Life
2. Treated With Dignity
3. Talents Are Valued
All efforts by the Autism Society focus on these three keys to mission fulfillment. Through our strategic planning efforts, the Autism Society identified 15 outcomes that best indicate improvement to the lives of those affected by autism. Each of the 15 outcomes supports one of the three keys: maximizing quality of life, being treated with dignity and having talents valued.
This new outcomes-based model addresses basic human rights that allow people to interact with one another and the world on their own terms. Quality of life indicators such as the ability to communicate, the freedom to choose a career and opportunities for community involvement are essential aspects of the human experience, and we promote treatments, accommodations and acceptance with them in mind.
Through this new model, the Autism Society is able to provide consistency in outcomes and experiences nationwide, while maintaining autonomy among the Autism Society Affiliates to best serve their local communities through local programs.
The 15 Outcomes:
- Academic Success
- Autonomy and Self Sufficiency
- Communication
- Financial Stability
- Health and Well Being
- Inclusion
- Independent Living
- Meaningful Employment with Fair Wages
- Pursuit of Dreams
- Recreation and Leisure
- Respect and Dignity
- Self Identity and Acceptance
- Social Connections
For more information on the Autism Society's Strategic Plan, please visit our website at www.autism-society.org
What are the organization's key strategies for making this happen?
In 2015, the Autism Society of America embarked on a comprehensive, highly inclusive and transparent strategic planning process that examined how best to assure that each person with an autism diagnosis would be able to maximize his or her quality of life each and every day. Our goal was simply to define how best to advance the work of a national network of the Autism Society to utilize our volunteers and staff members to assure opportunity and measurable outcome success in life for each of the over 3.5 million individuals related to their quality of life.
The Autism Society’s 5-year strategy identifies five distinct strategic goals critical to our mission success:
1. Lifespan Programs & Services
2. Effective Advocacy & Public Policy
3. Expanded Education & Training
4. Integrated Information & Referral
5. Enabling Effective Operations
In addition, the strategic plan also details a number of cross-cutting factors to enable the Autism Society’s long-term success. To ensure that our intent becomes reality, the Autism Society implemented a comprehensive strategic management approach. We established numerous cross-functional teams with our affiliate, public, and industry partners; and engaged over 200 key stakeholders (including family members, professionals, affiliate leaders, and especially individuals on the autism spectrum) throughout the process. The results are a robust 5 year Strategic Plan supported by detailed implementation plans. Collectively, these drive our budget priorities to ensure our goals and objectives are translated into discrete actions, initiatives, and innovations for which the organization will be held accountable.
For more information on the Autism Society's Strategic Plan, please visit our website at www.autism-society.org
What are the organization's capabilities for doing this?
Our work is dependent on supportive donors who believe in our vision and ability to positively improve the quality of life for all affected by autism. We are proud that we have a rich diversity of funding including individuals, foundations, corporations, and volunteers from $1 to
$125,000.
The Autism Society generates over $40 million in annual revenue throughout its nationwide network of affiliates. With approximately 79 affiliates operating in 37 states, our grassroots structure focuses on meeting the unique needs of local communities while maintaining standards of practice that ensure quality and outcome-focused efforts within the guidelines of our national mission and objectives. With the help of staff and volunteers, our structure maximizes the value of each donor's contribution. This diversity has helped us maintain our operations successfully for over 50 years.
We value transparency, quality of support, advancement, and meaningful outcomes; we thank our supporters for consistently trusting us to collaborate, connect, and pave the road forward to a better future.
We understand that every contribution matters - big or small - and we are dedicated to being responsive as we work towards a more inclusive, accepting world.
What have they accomplished so far and what's next?
Implementation of our new strategic plan is in process, including the establishment of outcome-measurement mechanisms. While we don't have specific results focused on our new outcome measurements, these achievements within the past year are tied to our overall goals and objectives:
In 2018, the Autism Society and its network of 79 affiliates were able to serve and support over 620,000 people. Here are some highlights from this past year:
➢ Program Services:
*Our network received over 225,000 phone calls, emails, and support cases (around a 20% INCREASE in I&R support provided in 2018, compared to 2017)
*Our Autism Source™ online resource database contains over 35,000 listings of autism service providers throughout the nation.
About 5,000 autistic adults attended self-advocate support groups across the country.
➢ Education and Awareness:
* Our network hosted over 8,000 events to support our community; this includes fundraisers, conferences, walks, inclusion events, and more.
* 157,000+ people were served through educational programs and service events.
* Our network trained over 7,100 first responders to be better prepared and understand the proper protocol for interactions with autistic individuals.
* 22,000+ individuals attended sensory-friendly movies throughout local communities, with support from our national partner, AMC Theatres.
➢ Advocacy:
In 2018, we successfully worked on the following public policy activities...
*Took a leadership role in advocating for the reauthorization and improvement of the Autism Collaboration, Accountability, Research, Education, and Supports (CARES) Act, the Lifespan Respite Care Act, and an extension of Money Follows the Person Program. These laws are on the verge of becoming law.
*Supported the Coalition to Advance Competitive Integrated Employment through Hill briefings and the introduction of several bills.
*Maintained federal funding for programs important to people with autism, such as special education and employment services, and newly authorized money to protect children who wander.
*Continued to advocate to protect Medicaid funded long-term care and protection within the Affordable Care Act. Submitted comments on numerous proposed regulatory changes related to health care, education, employment, and civil rights.
*Supported affiliates to advocate at the state and local levels in the areas of restraints and seclusion in schools, school safety, and first responder training.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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Who are the people you serve with your mission?
People with autism, their families and caregivers
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How is your organization collecting feedback from the people you serve?
Electronic surveys (by email, tablet, etc.), Paper surveys, Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees, Suggestion box/email,
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How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, 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,
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What significant change resulted from feedback?
We realigned our processes to follow up on every information and referral contact to ensure satisfaction or to pursue the need for continued services
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With whom is the organization sharing feedback?
The people we serve, Our staff, Our board, Our funders, Our community partners,
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How has asking for feedback from the people you serve changed your relationship?
We believe we are better empowering our community to give them the tools they need to make life better for autistic people and their families/caregivers.
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Which of the following feedback practices does your organization routinely carry out?
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 people’s interactions with us (e.g., site, frequency of service, 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 tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,
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What challenges does the organization face when collecting feedback?
It is difficult to get the people we serve to respond to requests for feedback, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time, It is difficult to identify actionable feedback,
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- 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.
Connect with nonprofit leaders
SubscribeBuild 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 Society of America
Board of directorsas of 10/22/2021
Mrs Lori Ireland
Ireland Family Foundation
Term: 2021 - 2022
Lars Perner
University of Southern California
Joseph Joyce
Keystone Insurers Group
Tracey Staley
Volunteer
Lori Ireland
Ireland Family Foundation
Howard Miller
Autism Society Southeast Wisconsin
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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? Yes
Organizational demographics
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
Gender identity
Sexual orientation
Disability
No data
Equity strategies
Last updated: 10/22/2021GuideStar 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
- We review compensation data across the organization (and by staff levels) to identify disparities by race.
- We ask team members to identify racial disparities in their programs and / or portfolios.
- We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
- We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
- We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
- We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
- We use a vetting process to identify vendors and partners that share our commitment to race equity.
- We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
- 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.
- We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
- We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.