Empowering Autistic Voices:�The Development of Self-Advocacy at Autism Finland

Riga 12.12.2025

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Elina Havukainen                                                                           

Head of Volunteer Activities

Autismiliitto ry/Autism Finland

Development of Advocacy Training at Autism Finland

2016: Autism Finland began training experts by experience—autistic individuals and their family members.

2022: A specialized advocacy training was planned to deepen the skills of trained experts by experience.

2023: Advocacy training was integrated into the basic training program. Feedback: Due to the heavy workload, advocacy training was separated into its own program.

2024: Advocacy training became a 15-hour standalone course.

2025: Training expanded to 20 hours to allow more time for discussion, based on participant feedback.

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Basic Expert by Experience Training

Prerequisite: ASD diagnosis (self or family member)Admittance: 15 participants

Duration: 2–3 months | Total workload: 45 hours|9 meetings (24h)|Independent work: 4 mandatory tasks + 1 optional task, preparation of a practice speech (21h)

Program Includes:

• Welcome & Introduction (Zoom, 2h)
• Orientation & Discussion on Autism Spectrum (In-person, 5h)
• Orientation to Tasks & Small Group Meetings (Zoom, 2h) – What makes a good speech?
• Small Group Meetings (Zoom, 6h) – Preparation and discussion of speeches in groups of 5
• Optional Task: Video “Powerful Speaker and Writer” (2h)
• Being Experts by Experience at Autism Finland – Practices and instructions (Zoom, 2h)
• Practice Speeches – Part 1 (Zoom, 2h)
• Practice Speeches – Part 2 (In-person, 5h)
• Peer Feedback on Speeches

Autism Advocacy – Advocacy Training Program

Prerequisite: Completion of basic Expert by Experience training. Duration: 2–3 months | Total workload: 20 hours

• 6 meetings (12h)
• 8 hours of independent work (pre-tasks + final task)

Topics Covered:

Me as an Advocate/ Advocacy in Finland and in Europe/ Advocacy at Different Societal Levels/ Local and Regional Advocacy – Cooperation with Autism Finland’s local member associations/ My Strengths and Skills as an Advocate/ Working in Committees and Councils/ Introduction to Autism Advocacy Work and the KOVA Group at Autism Finland

Final Task (Choose One):

1. Write an opinion piece
2. Develop a social media campaign plan
3. Conduct an analysis of advocacy in a chosen community
4. Or propose another personally meaningful task

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Evolution of Autism Advocacy at Autism Finland

After the first advocacy training in 2023, new pathways for participation were needed because: Requests we received focused almost exclusively on speeches by experts by experience, leaving little demand for other forms of advocacy. Newly trained autism advocates wanted meaningful opportunities to make an impact.

What did we do? We asked them—and they answered!

• 2023: Advocacy workshops defined goals and explored potential ways to organize an autism advocacy group within Autism Finland.
• 2024: Piloting and testing began, including commenting on statements, updating autism training materials, and refining the operating model for the advocacy group.
• 2025: The model was finalized, and the autism advocacy group KOVA officially launched its work.
• 2026: KOVA becomes a permanent part of Autism Finland’s advocacy operations.

Autism Advocates at Autism Finland – who are they?

Autism Finland’s Experts by Experience: Individuals who have completed both basic and advocacy training, including self-advocates and parental advocates.

Commitment to Our Core Values:

Equality: We promote the realization of human and fundamental rights. Everyone has the right and opportunity to participate in and influence society as themselves. We strengthen accessibility and inclusion in all areas of society.

Community: We foster a sense of belonging through collaboration with member associations, stakeholders, and international partners. We support peer connections and open dialogue.

Expertise: We are a reliable, independent, and up-to-date expert organization. Our work is grounded in both research and lived experience.

Empowerment: We ensure that autistic individuals and their families lead decision-making processes that affect them and shape how autism is discussed. We strengthen agency and self-advocacy among autistic people.

Principles of Autism Advocacy work in 2025

• Information and discussion sessions on statements and related topics are open to all 123 experts by experience.
• When selecting an advocate for a specific task (e.g., representing Autism Finland in a local disability council), basic training is more important than extensive advocacy training.
• Autism Advocacy Group KOVA:
• The KOVA group (“Stipra Grupa“) meets ten times per year with additional meetings managed independently by autism advocates.
• Temporary or regional working groups can be established for preparing statements, campaigns, election advocacy, and similar tasks.
• Shared rules and practices guide all activities. Materials are hosted on VEKO-website.
• A dedicated Discord channel is available for the KOVA group, along with an additional channel for communication with other stakeholders.
• Initial campaign themes focus on employment and education.
• Training in Discord use is planned for all members of Autism Finland’s peer support and expert-by-experience network (VEKO).

Autism Advocacy group work guidelines

• Each group has a designated chair and secretary responsible for collecting information and keeping stakeholders informed.
• Responsibilities are agreed upon in advance to ensure participation without risk of work overload.
• Working methods are defined at the outset, including communication practices, meeting structure, and speaking turns.
• Participation is flexible, allowing individuals to contribute in ways that match their abilities and interests.
• Meeting options include both morning and evening sessions to accommodate different schedules.
• In-person meetings are arranged whenever possible.
• Participation is voluntary and based on individual strengths and resources.
• Guidelines are reviewed and refined as needed.

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Challenges & Considerations?

• Representing Autism Finland in committees and councils requires time, planning, and coordination with stakeholders.
• How can we ensure advocates’ well-being and prevent burnout or drop-offs?
• How can we promote short-term autism advocacy—initiatives that require limited time and effort but deliver meaningful impact—aligned with individual resources?
• How can we enable low-threshold participation to make advocacy accessible to all?
• How can we support and encourage diverse forms of advocacy to reflect different strengths and perspectives?
• Broad goals within the KOVA autism advocacy group require clear prioritization to maintain focus and effectiveness.

Supporting Autism Advocacy group KOVA

• Provide regular updates on Autism Finland’s advocacy work, with meetings held at least twice a year.
• Coordinate the KOVA group collaboratively between Peer & Expert by Experience Activities and Advocacy Work.
• Share advocacy-related information and requests with the group.
• Distribute advocacy materials to support unified messaging.
• Share official positions and statements with the group to ensure transparency and informed participation.
• Offer regular continuing education opportunities (e.g., Canva, social media, social services).
• Maintain strong and effective mutual communication.

Autism Finland's Expectations for the KOVA Group

• Establish clear practices and rules for cooperation.
• Ensure effective communication and collaboration with Autism Finland’s advocacy team.
• Maintain Autism Advocates’ commitment to Autism Finland’s values, strategy, and board policies.
• Enhance, complement, and strengthen Autism Finland’s advocacy efforts through autism advocacy work.
• Promote the inclusion of the target group in all advocacy activities.
• Strengthen regional and local advocacy initiatives.
• These expectations also require Autism Finland to act accordingly.

Our future goals

• Support and integrate KOVA-Group’s initiatives into Autism Finland’s advocacy efforts, including campaigns, public statements, and related activities.
• Support and promote autistic trainers—individuals who combine lived experience of autism with the ability to educate effectively in diverse settings.

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Paldies!

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"Experience is not learned, it’s lived."