The spectrum of autism is very broad and I find that people with autism can be very different from each other, which makes it difficult for me to describe autism.
Professionally, I rely on the official diagnostic criteria of the DSM-V and IC-10 manuals, which can be broadly divided into difficulties in social communication and interaction, and restrictive and repetitive behaviours, interests and activities. The diagnostic criteria, however, only serve to better understand one’s own being in case of need and to eventually ask for support – but of course not all people with autism have this need and feel limited by their autism.
So in private I simply experience autistic people as they are and I don’t pay attention to the diagnosis. So I would say that autism is a condition that can influence the way you act, feel and think – it can lead to restrictions in everyday life, but not necessarily.
How has your understanding of autism spectrum disorders evolved in recent years?
Every day that I engage with autistic people and the diagnosis, I learn more and more. For example, at first I thought that people with autism tended to avoid physical contact or didn’t actively seek it out, but I soon found the opposite to be true with one boy who loves hugs for life. Similarly, I have met non-verbal autistic people, as well as autistic people who can express themselves verbally to a great extent. Some autistic people who hold on to a certain routine and others who are willingly open to spontaneous events. So I think I have a better understanding of the spectrum now and I’m even more open than I was before and let myself be surprised by people (with autism) every time.
In your experience, what do people with autism particularly need in order to have a good quality of life?
I think that a large part of quality of life comes from being able to enjoy life. Of course, existential factors such as access to housing, food and health preservation are important. But I think that non-existential factors such as personal fulfillment and social integration are also very important. In other words, a person should have the possibility to be active, to participate in decisions and to be involved in society (if they want to). Unfortunately, I think this is often more difficult for people with autism and many face stigma and inaccessibility.
How did you come up with the idea for this study?
The current project (Study: School Outcomes in Autism) actually consists of 2 sub-projects, each conducted by Dr Andreia Costa and myself together. Both projects are based on reports of personal experiences of people with autism and their families, own observations and research, and international scientific literature. For example, some studies show that children with autism, despite good cognitive abilities, can experience difficulties in their school career that can lead to exclusion from the regular school system. This phenomenon has been observed particularly in children with above average abilities. This is supported by parents who tell us that they have the impression that their children are not living up to their true potential in their school education.
There is also literature on how multilingualism is relevant for children with autism. Because in many countries, including here, families are often advised to use a single language with their child, but here in Luxembourg this is increasingly difficult to implement and is not directly supported scientifically.
That is why we are trying to analyse here in Luxembourg how multilingualism and complementary factors play out in autistic children and their families and how we can (even) better support children in our (multilingual) school system.