A gap in services and support for autistic people in Portugal led Raquel Tavares Lebre and Sara Rocha to co-found Associação Portuguesa Voz do Autista in 2020. APVA aims to create opportunities for meaningful autistic participation in decisions impacting autistic lives and communities.
Interview material collected and edited by Maya Parson
Tell us about Associação Portuguesa Voz do Autista (APVA).
Our mission is to amplify the voices of autistic people in Portugal, promote their recognition, and meaningful inclusion within the communities where they live, and defend our human, social, and civil rights.
We work towards a society that understands autism not as a disease or deficit, but as part of human diversity — neurodiversity. Our approach is neuroaffirmative, and grounded in the social model of disability and a human rights perspective. We reject pathologising and normalising frameworks that attempt to erase autistic ways of being.
APVA Objectives
- Promoting awareness, understanding and acceptance of autism
- Supporting autistic inclusion in education and employment
- Sharing accurate information and lived experiences to counter misinformation
- Strengthening autistic mental health, wellbeing and access to diagnosis
- Building partnerships that support autistic participation and rights in society
What was the motivation for founding APVA?
APVA was founded in 2020 by two autistic women — Sara Rocha and me — who identified a significant gap in services and support available to autistic people in Portugal, particularly for autistic adults.
At the time, most existing responses were centred on children and framed primarily through clinical or deficit-based approaches. There were very few spaces where autistic adults could participate meaningfully in decisions affecting their lives and communities or engage in collective self-advocacy.
Since its creation, APVA has developed into a platform for autistic self-advocacy, knowledge production and civic engagement. Our work is grounded in autistic lived experience, informed by current research — including scholarship produced by autistic researchers — and developed through social practice and community collaboration.
What are your main activities and projects?
APVA works across advocacy, research, training, consultancy and community-based initiatives developed in co-creation with autistic people. We deliver training sessions, workshops, lectures and conferences for schools, universities, companies and public institutions, and collaborate with families, professionals and organisations to promote environments where autistic people can thrive.
Our work combines community support, awareness-raising, policy advocacy, and capacity-building. We challenge misinformation about autism and promote narratives produced by autistic people themselves. We also engage in policy dialogue, contribute to public consultations, and participate in national and European networks to ensure autistic perspectives are represented in decision-making processes.
An example of our advocacy work is our campaign for the criminalisation of forced sterilisation in Portugal. Forced sterilisation of disabled people remains legally permitted in several EU Member States. Currently, 12 countries allow forced sterilisation, and only nine criminalise it as a distinct offence; three countries, including Portugal, still allow it for minors.
At the national level, APVA develops several co-funded projects addressing autistic rights, wellbeing, education, and inclusion. These include AutisticUni (higher education inclusion), Auticorpos / Auticorpos 2.0 (mental health and professional training), AutiRenascer (domestic violence and specialised support for autistic victims), DIN+ Direitos de Inclusão (rights literacy and access to rights), AutiSex (inclusive sexual education) and AutiVisibilidade (intersectionality and autistic people from socially marginalised communities).
At the European level, APVA participates in several European cooperation projects that strengthen autistic participation, accessibility, and employment. These include Aut of the Box (autistic participation, awareness-raising, and sharing autistic perspectives), Points of Connection (improving accessibility of services and supporting autistic youth participation, including the implementation of the Autism Friendly Spaces accreditation across 6 countries), ACTIVATE – Autistic Community through Advocacy, Learning and Empowerment, which is developing the first Autistic Advocacy Academy, and Same Chance Employment, which focuses on inclusive employment and employer training.
Alongside project work, APVA maintains ongoing community support services, including an electronic rights support service that helps autistic people and their families navigate access to rights, including guidance on education rights, how to obtain a formal diagnosis, referrals to allied health professionals, understanding available social and tax benefits, and how to access support measures, reasonable accommodations and assistive products. and structured peer-support groups for autistic adults, including AutiMulheres 40+ (a dedicated group for autistic women and people who identify as women, including trans and gender-diverse people, aged 40 and over).
APVA also organises the annual Autistic Pride Day in Portugal, an annual event that brings together autistic people and allies to celebrate autistic identity, visibility, and community.
Through these activities, APVA translates autistic-led knowledge into practical guidance for education providers, employers, services and community organisations, strengthening autistic participation, wellbeing and access to rights in Portugal and across Europe.
What specific achievements or impacts are you most proud of? Are there any “best practices” or examples of successes that you would like to share with other organizations?
One of the achievements I am most proud of is contributing to the strengthening of autistic self-advocacy in Portugal. When APVA was founded, there were no autistic-led organisations in the country.
As pioneers of autistic self-advocacy in Portugal, we have helped create space for autistic people to participate actively in decisions that shape our lives, our communities and the policies that affect us.
I am particularly proud of our projects that combine lived experience, research, and participatory approaches to identify barriers and develop practical solutions. Our work spans several areas affecting autistic people’s lives, including mental health, protection from violence, inclusive education, employment, and community participation. These initiatives bring together autistic people, researchers, professionals, and organisations to generate knowledge, improve services, and promote more inclusive practices and policies.
One example is the DIN+ project, which led to the creation of an electronic support service that has since become a permanent free service provided by APVA. This service helps autistic people and their families access clear, reliable and centralised information about their rights, addressing a longstanding gap in Portugal where such information was often difficult to find or scattered across different sources. The project also resulted in the development of the Practical Guide to Inclusion Rights for Autistic People, a reference resource designed to support autistic people and their families in identifying, understanding, and exercising their rights.
I’m also proud of our advocacy work, including campaigns against forced sterilisation of people with disabilities. Raising awareness about this issue is essential to ensuring that the bodily autonomy and human rights of disabled people are respected. A few years ago, this issue was rarely discussed in Portugal; today it has entered the legislative agenda, with growing research and public awareness.
Another area of impact that I am particularly proud of is the creation of both online peer-support groups. These groups provide safe spaces where autistic people can share experiences, connect with others, and build community. Participation has grown steadily over time, and the feedback we receive is deeply positive. Many participants tell us that these spaces offer a sense of belonging, visibility, and acceptance that they had not previously experienced. In several cases, people who first met through these groups have developed lasting friendships and strong mutual support networks. Creating and sustaining spaces where autistic people can meet, support one another, and feel genuinely welcomed has been one of the most meaningful aspects of our work.
I am also proud of the creation of the annual Autistic Pride Day in Portugal. This event has become an important space for visibility, celebration, and community-building, bringing together autistic people and allies in a safe and welcoming environment. As the only event of its kind in the country, it plays a meaningful role in affirming autistic identity and strengthening connections within the autistic community.
Across all these initiatives, one best practice I would highlight is the importance of co-creation with autistic people. Projects designed and implemented with autistic participation tend to produce more relevant, accessible, and sustainable outcomes.
How does participation in EUCAP contribute to your mission?
Participation in EUCAP is extremely important for APVA because it strengthens autistic self-advocacy at European level and creates opportunities for collaboration between autistic-led organisations across different countries. Through EUCAP, we are able to exchange knowledge, build relationships with other autistic advocates and organisations, and coordinate advocacy efforts while contributing autistic perspectives to European policy discussions.
For example, APVA participated in the AIRA project (Artificial Intelligence and the Rights of Autistic People), which examines how artificial intelligence technologies affect autistic people and strengthens autistic capacity for digital rights advocacy. We also collaborate with EUCAP in the ACTIVATE project, which benefits from EUCAP’s experience in strengthening autistic self-advocacy at the European level and in ensuring the inclusion of diverse autistic voices.
We have also supported EUCAP initiatives aimed at raising awareness about the experiences and concerns of autistic people, including discussions around the use of Applied Behaviour Analysis (ABA). APVA shared EUCAP’s statement on ABA and later developed our own organisational position reflecting the concerns expressed by autistic people.
APVA has also contributed to EUCAP work addressing violence against autistic people, as well as initiatives supporting autistic refugees and humanitarian responses, including guidance materials for supporting autistic people in crisis situations.
Participation in the EUCAP network has also created opportunities for international collaboration. Through connections developed within this network, APVA organised the international conference “Autism by Autistic People” in Portugal, bringing together autistic advocates working at the European and international level. Autistic people are still too often excluded from the development of social and equality policies in Europe, and the conference aimed to demonstrate how policy discussions can meaningfully include autistic voices and lived experience.
Through these collaborations, EUCAP helps amplify autistic voices within European policy debates and ensures that autistic perspectives are represented in discussions that shape legislation and public policy.
What difficulties or challenges does APVA face?
Like many organisations of people with disabilities (OPDs), APVA faces structural challenges related to funding, bureaucracy, and accessibility.
In Portugal, much of the available funding continues to be directed towards organisations that maintain institutional care models. While these organisations often provide important services, such models do not always promote autonomy, community participation, and independent living.
Organisations that promote independent living and self-advocacy frequently face significant difficulties in securing sustainable funding. Without adequate financial support, it becomes extremely challenging to hire staff, develop long-term projects, or maintain stable organisational structures.
Administrative procedures are also highly bureaucratic and complex. For small organisations with limited staff, these requirements can place a significant burden on teams and contribute to high levels of stress and burnout.
For autistic-led organisations, these challenges can be compounded by the lack of accessible administrative processes and the absence of reasonable adjustments in funding mechanisms.
We believe that meaningful inclusion requires funding structures that recognise the value of self-advocacy organisations and support their sustainability. Simplifying administrative procedures and providing dedicated funding streams for organisations of people with disabilities would significantly strengthen their capacity to contribute to social change.
What are your main goals for the coming years? Are there new initiatives in development?
In the coming years, APVA aims to strengthen its organisational capacity while continuing to expand its work in autistic self-advocacy, research, policy engagement, and community support.
Internally, we hope to increase our team, improve organisational processes and strengthen our ability to respond to the needs of the autistic community in Portugal.
One of our priorities is the development of new projects addressing under-explored areas affecting autistic people. For example, the NeuroMater project focuses on neurodivergence and motherhood, aiming to better understand and address the barriers faced by neurodivergent women during pregnancy, childbirth, and the postpartum period.
Another important priority for the coming years is to increase the visibility of autistic people from underrepresented communities and to raise awareness of intersectionality within autism. We aim to challenge stereotypes that have historically centred autistic experiences around white, male narratives, which do not reflect the diversity of our community.
Our work will continue to highlight and amplify the lived experiences of autistic people who face multiple layers of discrimination, including Black autistic people, Latin autistic people, migrants, Roma communities and other underrepresented groups. Through research, advocacy and community initiatives, we seek to promote a more inclusive understanding of autism that recognises the diversity of autistic identities and experiences.
We also aim to expand our participation in European collaboration projects, particularly those that strengthen autistic advocacy, rights, and community empowerment.
Another important goal is to continue advocating for the criminalisation of forced sterilisation of people with disabilities in Portugal. APVA will continue working to ensure that the bodily autonomy and human rights of people with disabilities are fully protected under Portuguese law.
Ultimately, our goal is to contribute to a society in which autistic people can participate fully, exercise their rights, and live independently within their communities.
Is there anything else you would like to share with the other member organizations of EUCAP?
Across Europe, autistic-led organisations are playing an increasingly important role in advancing disability rights and strengthening self-advocacy.
Working together through networks such as EUCAP allows us to share knowledge, support each other’s work and collectively advocate for policies that promote independent living, accessibility and full participation for autistic people and other disabled communities across Europe.
It is encouraging to see a growing number of autistic people, disabled people, and self-advocacy organisations actively shaping our communities, societies and futures. At the same time, it is essential that we continue to diversify the voices represented in these spaces, ensuring that autistic people from different backgrounds, cultures, and life experiences are heard and included.
This collective work is essential to building societies where diversity is recognised, respected, and valued.
Thank you, Raquel!
APVA at a glance
Name: Associação Portuguesa Voz do Autista
Country: Portugal
Year established: 2020
Staff: Board members, Paid staff (four)
Membership: 100 associates plus volunteer network
Target group: Autistic people, families, educators, professionals, stakeholders
Core values: Self advocacy, Neurodiversity and neuroaffirmation, Inclusion and accessibility, Intersectionality, Human rights, Anti-discrimination, Community and care, Ethical and rights-based support, Global solidarity and disability justice
Communication: Website, social media, newsletters
Funding: National grants, European programmes, partnerships, community support (membership fees, donations)
Previous EUCAP Member Interviews
Robert van der Gun – PAS Netherlands
Daniel Grahn, Johannes Sandqvist, and Johan Sveno – Organiserade Autister Sweden Kosjenka Petek & Zrinka Sinkovic — ASK Croatia
Maria Ivănescu — suntAutist Romania
Viera Hincová – A-Centrum Slovakia
Kabie Brook – ARGH Scotland
Carmen Molina – CEPAMA Spain
Thibault Corneloup & Hélène Queyras — CLE France
Frederik Boven Stichting — Autisme Digitaal Netherlands
