Autism Society of America HQ

Improving the Lives of All Affected by Autism

aka Autism Society   |   Rockville, MD   |  https://www.autism-society.org

Mission

The Autism Society envisions a world in which individuals and families living with autism are able to maximize their quality of life, are treated with the highest level of dignity and live in a society in which their talents and skills are appreciated and valued. The development of five “core competencies” as a means to implement the Autism Society’s Mission and Vision is proposed in the Autism Society’s strategic plan. Those areas include: Advocacy, Education, Information and Referral, Support, and Community.

Ruling year info

1992

President and Chief Executive Officer

Mr. Christopher S. Banks

Main address

6110 Executive Blvd Suite 305

Rockville, MD 20852 USA

Show more contact info

Formerly known as

The National Society for Autistic Children

EIN

52-1020149

NTEE code info

Autism (G84)

Developmentally Disabled Services/Centers (P82)

Disabled Persons' Rights (R23)

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 2019, 2018 and 2017.
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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

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.

Population(s) Served
People with disabilities
People with intellectual disabilities

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.

Population(s) Served
People with disabilities
People with intellectual disabilities

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.

Population(s) Served
People with disabilities
People with intellectual disabilities

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 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

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.

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

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

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.

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

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?

    People with autism, their families and caregivers

  • 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,

  • 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,

  • 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

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • 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.

  • 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,

  • 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

Autism Society of America
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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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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 Society of America

Board of directors
as of 10/22/2021
SOURCE: Self-reported by organization
Board chair

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

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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 10/22/2021

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)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

No data

Equity strategies

Last updated: 10/22/2021

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 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.
Policies and processes
  • 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.