Autistic Adults' Reading and
Who is LAVA?
As adults with autism, we do not fit into the stereotypical image that still exists today about autism. Just like lava, under the pressure of conditions, remains below the surface for a long time, our autism remained unnoticed and it only came to light in adulthood. That was usually at a time when compensating for and camouflaging our ‘otherness’ was no longer enough to keep functioning. After an often difficult period, we were diagnosed. A diagnosis that, for each of us, was the beginning of a new quest.
Our bewilderment at the perception of autism brought us together: adults with autism, who received our diagnosis after a life in which we achieved quite a lot: a university degree, a career, a family,….
Autistic Adults' Reading
and Advisory Group
We are committed to building a constructive dialogue with the scientific research of autism and the perception of autism.
We want to give another, additional, voice to autism and so help redraw its image.
As adults (students, employees, employers, entrepreneurs, partners, parents, …) with autism, we want to bring a positive message: instead of merely focusing on the tip of the iceberg (the challenges associated with autism) we want to show there is a vast sea of opportunities and refreshing ideas beneath the surface.
In order to achieve this, we want to:
proceed to a critical reading of autism research;
reflect and advise on priorities in autism research;
adjust opinions and perceptions of autism in the media;
participate as one of the voices of the autistic community.
In this way, we want to give autism a direct voice in both scientific and public debate and to show that our innate uniqueness is also an enrichment.
In the scientific debate, LAVA wants to shift the focus from the ‘causes’ of autism to ‘living with’ autism, free of stereotypes and stigma. In concrete terms, here are our proposals to give a direct voice to people with autism:
Always ask for an autistic opinion in articles on autism, this not as the ‘final’ word but as an opinion of the minority directly involved (an ‘autistic test’).
When setting priorities for research, both the autistic voice and the voice of those directly living with us need to be structurally included.
Structural involvement of people with autism in research itself, so that research is inspired by hands-on experience and needs of autistic people and avoids getting stuck in persistent prejudices (for instance – autistic people want to avoid all social contact).
Just as in the medical world, where patients (associations) have a say in setting the research priorities, so the participation of the directly involved is relevant as well in autism research . In our case, however, we hit a double barrier: on the one hand, we do not feel like patients and, on the other, we are not expected to speak for ourselves. Breaking through this double barrier is our goal. This implies being active in the public debate and active participation in research. We know quite a bit about autism as we have been living with it our whole lives. However, we don’t claim to have the last word in the matter.
Research in the following areas is a priority for LAVA:
Research on the long-term impact on our wellbeing of the continuous stress and suffering in order to appear as ‘normal’ as possible. So far there has been too little research on this suffering and on possibilities for a better balance between adapting and being oneself;
Longitudinal (socio-economic) research: current research focuses on specific problematic stages of life. We find it is imperative to look at both ‘what does not work’ and ‘what does work’, at both our strengths and limitations throughout the course of life;
Participation in research: we are in favor of more autism research, but this requires that research is more transparent and open to active contribution of autistics;
Inventory of relevant current autism research is one prerequisite for such transparency.
We discussed different scientific angles and set our priorities on autism research, see above. We presented these priorities to the researchers of Leuven Autism Research (LAuRes) where we participate in the interdisciplinary meetings. Together with the VVA, we were recognized as a member of the advice group for the Academic Autism Laboratory as was set up as part of the Flemish Autism Action Plan.
Since the spring of 2020, in addition to our semi-annual member meetings, we also organise (quasi-monthly) online article reviews for members. We strive to include autism researchers and try to formulate a conclusion that can inspire further research or that can weigh on the public debate around autism. As members of EUCAP (the European Council of Autistic People), we are also internationally active.