Profound Autism Alliance

Compassion | Clarity | Progress

Dover, MA   |
GuideStar Charity Check

Profound Autism Alliance

EIN: 92-0405006


The Profound Autism Alliance is committed to the recognition of the unique challenges that people with profound autism and intellectual disability experience. Our mission is to improve their health and connection through inclusive research and focused advocacy that will result in meaningful services and supports.

Ruling year info


Co-Founder & President

Judith Ursitti

Main address

5 Yorkshire Rd

Dover, MA 02030 USA

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Subject area info


Diseases and conditions

Population served info






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NTEE code info

Alliance/Advocacy Organizations (G01)

IRS subsection

501(c)(3) Private Nonoperating Foundation

IRS filing requirement

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

Tax forms

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Programs and results

What we aim to solve

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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?


Members of Congress routinely make decisions that affect the quality of life of people with profound autism and those who provide their care, it is imperative that legislators genuinely understand the realities of these constituents.

The Profound Autism Alliance is building a formidable grassroots network to engage in positive, effective, ongoing federal and state advocacy. Our consistent presence on Capitol Hill, ongoing education of our advocacy network, and continued engagement on relevant issues (including research, special education, home and community-based services, healthcare, residential services, safety, and quality of life) will establish our community as one that makes meaningful change occur.

Population(s) Served

People with profound autism are generally not included in clinical research. We work with the best and brightest researchers and clinicians to ensure their inclusion and that best practices are developed for them that are available across the lifespan and in all parts of the country.

Population(s) Served

Where we work

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.

1. Develop a robust training network of psychiatric physicians practicing in local communities to increase access to best-practice care and improve assessment and treatment to increase positive outcomes and yield a higher quality of life for people on the spectrum who experience severe behaviors.
2. Provide connection and resources to caregivers and professionals working with this marginalized population.
3. Advocate positively and effectively on the federal and state levels to ensure critical recognition of profound autism, resulting in meaningful supports and services.
4. Establish partnerships with other organizations to broaden our impact and reach.

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 shared information about our current feedback practices.
  • 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

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

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

    We don't have any major challenges to collecting feedback


Profound Autism Alliance
Fiscal year: Jan 01 - Dec 31

Financial data

SOURCE: IRS Form 990

Profound Autism Alliance

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

Profound Autism Alliance

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data


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

Letter of Determination is not available for this organization
Form 1023/1024 is not available for this organization

Co-Founder & President

Judith Ursitti

Profound Autism Alliance

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

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Compensation data
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There are no highest paid employees recorded for this organization.

Profound Autism Alliance

Board of directors
as of 02/22/2024
SOURCE: Self-reported by organization
Board of directors data
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Board chair

Judith Ursitti

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
  • 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? Not applicable