(by Els Van Beneden)
Introduction
In this interview, we speak with Carmen Molina, chair of CEPAMA, the Spanish Committee for the Promotion and Support of Autistic Girls and Women. Carmen shares insights into the realities faced by autistic women and girls in Spain and explains how the organisation works to improve the situation of this minority within a minority.
Hello Carmen, could you briefly present what CEPAMA is?
Carmen: Yes, of course. CEPAMA is the Committee for the Promotion and Support of Autistic Girls and Women. We are mainly active in Spain, but we also keep many contacts in Latin America. Our project is unique because it is 100% based on self-representation: all the content, positions and activities stem from the voices of autistic women themselves.
Since when does the association exist?
Carmen: It was founded in 2017, initially as an autonomous working group within an already existing organisation. Two years later, in 2019, we took the step of becoming an independent non-profit association with its own legal personality. The initiative came from seven autistic women, led by one of the first activists in Spain who specifically raised awareness about the situation of autistic women.
Autism and Gender: the driving force behind CEPAMA
Why was it so important to create a specific organisation for autistic girls and women?
Carmen: Because in Spain we saw that women on the spectrum often remained invisible. Diagnoses were either not carried out or came far too late, knowledge and research were practically non-existent, and many of our experiences found no place in the dominant debate on autism, which was heavily medical and male centred. From that awareness we decided: there needs to be an organisation that brings together and strengthens these voices.
You stress the idea of “double discrimination”. Could you explain this?
Carmen: Of course. Autistic women face both gender discrimination and the difficulties of achieving full social inclusion.
Structure and Internal Functioning
How is CEPAMA organised?
Carmen: We have a Board of Directors composed of seven women, renewed every four years. We have no paid staff; all the work is carried out voluntarily. At present we have 156 members, all autistic women, with a single exception: the mother of a non-verbal autistic girl with an intellectual disability, who represents this part of the community in our board.
Does this mean that anyone within the organisation can play an active role?
Carmen: Absolutely. We operate by projects. This means that members can propose projects or join existing initiatives. Some participate very intensively, others only occasionally, depending on their energy, interests or life circumstances. That flexibility is essential: it gives autonomy and allows contributions at one’s own pace.
Mission, Values and Vision
What would you say is the core of your mission?
Carmen: We want to increase the visibility of autistic girls and women, defend their rights and contribute to their wellbeing and social inclusion. Empowerment is central: autistic women must be able to tell their own story, take part in decision-making, and guide research, policy and social relations.
That sounds very rights oriented. How do you position yourselves in relation to the dominant medical model?
Carmen: We are very clear: we move away from the traditional medical-rehabilitation approach. We do not see autism as something that has to be “fixed” but as a form of human diversity. This does not mean we do not value support and resources – which are often essential – but our priority is inclusion and equality.
And how do intersectional issues fit in here, such as migrant background or poverty?
Carmen: This is a key point. We are intersectional by definition because we work with a minority within another minority. Many of our members have multiple identities, with additional layers of discrimination. This makes defending their rights even more urgent.
Activities, Projects and Research
What does your daily work look like? What exactly do you do?
Carmen: Our activities usually fall into three categories:
- Peer support: organising dialogue spaces, monthly meetings for members, and debate forums.
- Rights advocacy: developing campaigns and engaging in public policy.
- Research and dissemination: through congresses, conferences, our own online school, and participatory research.
Could you give some examples of your public events?
Carmen: We organise our own conferences, such as “Autistic Women from Within the Spectrum”(2018) and “Autistic Women: the Right to Health and Wellbeing as a Social Challenge” (2019).
We also participate in events such as “Healthcare for Autistic People” (Hospital 12 de Octubre, Madrid), “Camouflage and Invisibility” (Autonomous University of Seville), and AETAPI (Autism professionals) congresses in 2017, 2019 and 2024; at Autism Europe in 2019 and 2025; and “Invisible Autism in First Person” in 2023, 2024 and 2025.
We also teach in the Postgraduate in Autism (Autonomous University of Barcelona), in the Autism Specialist Course (Fundación Quinta de Madrid), and in the Collaborative Diploma in Autism of the Red para Crecer in Latin America.
In addition, we give talks at secondary schools, for both teachers and pupils.
You mentioned you work by projects. Could you give examples?
Carmen: Yes, in projects related to violence against women, inclusive education, access to the labour market, the right to motherhood, or diagnosis in women. These projects resulted in thematic meetings or publications.
Have you also carried out participatory research?
Carmen: Yes, we are very proud of the project “Research is a Matter of Rights”, developed between 2020 and 2022. It was the first time in Spain that autistic women participated as researchers. The results were published in a book and are now also available as a training course. We presented the results of this research at the Autism Europe congress in Dublin last September (note: the English version of this presentation will later be available on request at CEPAMA).
Political Impact and Activism
Could you also tell me about your campaigns and political influence?
Carmen: In 2022, we signed a collaboration agreement with the Royal Board on Disability. We have also carried out actions and campaigns in defence of the rights of our community.
How do you manage to bring about political change?
Carmen: An important step was the approval in the Spanish Parliament in 2017 of the motion “Autistic Women, Double Discrimination”, drafted directly by our members.
Our campaigns also had international impact, partly thanks to EUCAP. For example, we campaigned against the pseudo-therapy promoted as a “cure” for autism using sodium chlorite (chlorine dioxide) (MMS – Miracle Mineral Solution), a toxic substance that endangers the lives of many autistic children whose families fall into sectarian networks. We also launched a campaign against hate crimes after the murder of an autistic young man in Madrid.
Being a relatively small organisation, isn’t it difficult to be heard?
Carmen: Yes, in Spain small and critical organisations hardly have access to public funding, as subsidies go mainly to the large traditional autism organisations with a focus on autistic people with intellectual disability. That makes our activism something carried out “from the margins”, but we notice that our voice does manage to make its way where it is needed.
Funding: Possibilities and Limits
How do you finance all this work?
Carmen: Almost exclusively through membership fees. Only one project has received public funding so far.
We have also tried crowdfunding, with mixed results.
At present, we only carry out what we can finance ourselves, and other proposals are kept for the future.
Communication and Visibility
How do you make your work known?
Carmen: We have a website and publish annual reports. We also run an online school, organise members’ assemblies, and occasionally appear in the media. Overall, our relations with the press have been positive, although access to large platforms is not easy.
Could you tell us more about the online school?
Carmen: We have a dedicated website (escuela.cepama.es). We offer courses for professionals as well as autistic people and their support networks.
Our courses are based on scientific research and lived experience, which makes them unique. Our trainers are autistic women with knowledge of research and teaching, who integrate this expertise with their lived experience to provide up-to-date information, aiming for equal opportunities and improved quality of life for autistic people. (Note: if you are a EUCAP member, you can also request a discount for the courses in Spanish).
Collaboration and Networks
Who do you collaborate with?
Carmen: At national level we are in contact with many Spanish organisations: CERMI Mujeres, AETAPI, Asperger España, Cambia el Cuento, Asociación New Life and Asociación ProTGD.
At international level, above all with Mujeres CEA and the Red para Crecer in Latin America.
In addition, one of our board members also is a member of the EUCAP Board.
What does EUCAP bring you in concrete terms?
Carmen: We believe it allows us to broaden our alliance network at European level and share experiences with other self-advocacy entities, to be present in working groups, research and dissemination events on autism in general and autistic women in particular.
Obstacles, Stigma and the Future
What are the obstacles you most frequently encounter?
Carmen: Above all, being a minority within a minority. Traditional institutions maintain an ableist, medical-rehabilitation model, which does not represent us. Because of this, we barely receive public support and risk remaining invisible.
How do you address stigma and misunderstandings about autism?
Carmen: With information and activism. We make it clear that we are the experts on our own experience and that our voices are indispensable.
And how do you see the future?
Carmen: In our Strategic Plan 2024–2028, we have set out that we will continue to focus on self-representation, rights advocacy and empowerment. We also hope to further shape participatory research.
If you could realise one dream, what would it be?
Carmen: That autistic women cease to be “the invisible ones” of the spectrum and are naturally present in policy, research and society.
To Conclude, what focus would you like EUCAP to take, now and in the future?
Carmen: On rights advocacy and participatory research.
Thank you, Carmen, for this interview.
