Research Opportunities

1. Purpose
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As an organization representing families with confirmed autism diagnoses, we occasionally receive
requests from researchers seeking access to our community. This policy outlines the minimum criteria
and guiding principles we use to determine whether we will disseminate research opportunities or
collaborate on a study.
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2. Minimum Requirements (All Must Be Met)
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a) Ethical Approval
• The study must have approval from a recognized Research Ethics Board (REB/IRB), or clear
evidence that approval is being sought before recruitment begins.
• A transparent plan for privacy, data security, and voluntary withdrawal must be provided.
b) Mission & Values Alignment
• The study's aims, methods, and language must align with our organization’s mission and the
well-being of autistic individuals.
c) Non-Exploitation of Participants
• Participant burden must be reasonable relative to potential benefits.
• Participants must not incur costs to participate and should receive fair compensation where
appropriate.
d) Respectful & Accessible Practices
• Materials must be in plain language and available in accessible formats.
• The researcher must demonstrate awareness of autistic communication, sensory, and scheduling
needs.
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3. Priority Criteria (Used to Rank Eligible Proposals)

a) Community Partnership
• Evidence of autistic people and/or caregivers being involved in designing the research, interpreting
results, or advising the team.
b) Relevance to Community Priorities
• The research meaningfully addresses issues that autistic individuals and their families identify as high
priority.
c) Transparency & Independence
• Full disclosure of funding sources and any potential conflicts of interest.
d) Reciprocity & Knowledge Sharing
• A commitment to return results to participants and our community in accessible formats.
• A plausible pathway for findings to lead to real-world improvements.
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4. Process for Review

1. Researchers submit a short proposal including REB approval, project summary, recruitment needs,
accessibility measures, and compensation details.
2. Proposals are screened against Minimum Requirements.
3. Eligible proposals are evaluated using the Priority Criteria.
4. The board makes a final decision based on alignment, capacity, and anticipated benefit to families.
5. The organization communicates approval or decline using standard template responses.

5. Organizational Boundaries

• We will not share identifiable member information under any circumstances.
• Our support does not imply endorsement of specific treatments, clinicians, or institutions.
• We reserve the right to decline any study that places undue burden on our community or contradicts
our values.

6. Guiding Principles

• Community involvement
• Respect and autonomy
• Transparency
• Non-exploitation
• Meaningful benefit