Due to COVID-19, there was no physical meeting for presenting our fourth Passwerk Lifetime Achievement Award. Due to the situation and Ilse's extremely busy schedule, we mutually agreed not to write a biography about Ilse. Instead, Ilse was asked to choose a charity for us to donate the equivalent of the cost of the book. Extraordinary circumstances require extraordinary decisions, but we hope that in 2021 the Lifetime Achievement Award can again be presented in the traditional manner.
Though there is no biography, we were able to interview Ilse, so everyone can get a better idea of who Ilse Noens is and what she stands for.
Ilse, congratulations with your Passwerk Lifetime Achievement Award. You won the award in the year of COVID-19. What consequences has COVID-19 had for your professional activities?
Gosh, it's been a challenge in various areas. University classes had to switch quickly, from (pretty much) entirely in-person to entirely online, then ‘blended’ (a combination of in-person and online) and now entirely online again. Teaching large groups of students interactively and keeping them engaged while distance learning is really not self-evident. Our adaptability was also put to the test in our clinical work with children, youths, adults and families. We had to continually adapt the activities of our practice centre PraxisP to the changing and sometimes contradictory regulations regarding health and well-being, while at the same time guaranteeing our clients' care continuity. And the face-to-face data collection for our scientific research had to be completely delayed for a while. Luckily, most of the research has started up again. In this corona era, we also started doing research into the consequences of the COVID-19 pandemic on the mental health of adults with and without autism. It was and is a difficult period, but I've learned a lot in a very short time and am even somewhat happy with the forced, fast learning curve in e-learning and e-care.
How do you feel about winning this award?
I'm surprised, honoured and very grateful. It's not my first award, but it is the first awarded by a practical organisation and not a university. I think it is really important that the university serves the general public and that makes this recognition – from the practical world – very valuable to me. I did have to get used to the idea of a 'lifetime achievement award'. I feel like I'm too young (in spirit at least) for such an award. I hope to move more barriers in my ‘lifetime’ to make it possible for people with autism to participate equally in our society. In that sense, I reformulated the award in my head to an ‘encouragement award’.
You have been Chairperson of the ‘ICT Community for ASD’ since it was established. What does the fund mean to you?
I enjoy working with the other members of the board committee on supporting good initiatives in both Dutch- and French-speaking Belgium. The fund provides a bit of ‘seed money’ for innovative projects with and for people on the autism spectrum. Via the fund, Passwerk plays a unique role in forming a more positive image and inclusion of people with autism.
Who in the autism world have been a real inspiration to you?
Many people have inspired me, both close and far away, but if I really have to choose, then it has to be my supervisor at Leiden University, Prof. Ina van Berckelaer-Onnes. She helped shape me as a teacher, scientist, care provider and as a person. Ina taught me to be aware of the support needs and talents of people with autism as well as those of their parents, siblings and others close to them. Ina has placed autism in an orthopedagogical perspective. Before that, ‘autism’ was mainly the ‘child’ of doctors and psychologists. Ina did that in an exceptionally involved, positive and enthusiastic manner, with the autism community as an ally.
This year, due to the extraordinary circumstances, we decided together with you that you would choose a charity and Passwerk would donate the cost price of the usual biography. What charity did you choose and why?
There are a lot of great initiatives that I'd like to support, but I finally chose LAVA, Lees- en Adviesgroep Volwassenen met Autisme (Reading and Advice Group for Adults with Autism). LAVA consists of adults with autism who do not fit today's stereotypical image of autism. They are involved in giving autism a different, additional voice when it comes to scientific research and social imaging, and in helping to reshape the typical image of autism. This is absolutely not instead of, but together with, other voices in the autism field, in a positive, constructive-critical manner. In close collaboration with the Vlaamse Vereniging Autisme, they interpret the NOOZO principle: ‘Niets Over Ons Zonder Ons’ (Nothing About Us Without Us).
Your name will be immortalised on the plaque in our office, in the hall named after you. How does that feel?
It makes me feel really humble. My name is on it, but our work is true teamwork. In that sense, the PLAA is not just for me but also for the people I work with on a daily basis in the context of autism: the post docs, PhD researchers and other employees in our group who give the research concrete form and content every day, the colleagues from Leuven Autism Research (LAuRes), the colleagues from the Academische Werkplaats Autisme (AWA), the partners in the Taskforce Autisme and many more.
Are there things in your field of work that you still want to achieve?
There is quite a lot of fundamental research on autism being done in Flanders. That is needed and useful, but I would like research to be more in line with the priorities of the autism community and make it more participative. So I'm very happy that we received financing from the Flemish Government for the Academische Werkplaats Autisme (AWA). In AWA, we work in dialogue with people with autism, those closest to them and policy makers as well as in close collaboration with the research centres and out in the field to further develop, evaluate and improve good practices for people with autism (and those around them). What types of raising awareness, prevention, support, guidance and treatment are really effective? What makes something work? We want to spread the knowledge that we gain, as broadly as possible and free to access. The first projects will end in 2021 and we hope that the Flemish Government will give us a chance to continue our work. And hopefully we can inspire other researchers to work (more) participative.
What are the biggest challenges for a person with autism in our society?
People with autism experience a lot of hindrances. For example, in education, employment, living situation, health, relationships, sexuality, etc. They seem to be especially vulnerable during life's transition phases (going to school for the first time, transition to secondary or higher education, independent living, losing someone from their personal network, having children, being terminated from a job, retirement, etc.). In particular, a lack of adapted daily tasks leads to extra problems, for example, regarding mental health. An important challenge is also changing the stereotype regarding autism in our society.
What are the biggest clichés about autism?
I can't explain that as well as illustrator Stephanie Dehennin and author Elise Cordaro. These experts debunked eight clichés in a six-minute long film for Charlie Magazine. Watch it at: Voorbij het vooroordeel: 8 clichés over autisme ontkracht: Charlie magazine (https://www.charliemag.be/ mensen/cliches-autisme)
What do you consider the highest priorities in the framework of autism?
Taskforce Autisme formulated a whole series of policy recommendations in 2016 upon the request of Minister Vandeurzen. These recommendations include actions at various levels with autism-friendliness as the starting point, expertise and knowledge as the basis for a professional approach, early recognition and high-quality diagnostics, support in a life cycle perspective, adapted education, work, etc. Policy wise, progress has certainly been made, including via the Vlaams Strategisch Plan Autisme and the Vlaams Actieplan Autisme, but there is still a lot of work to do. Political bravery is required, as well as collaborations across policy domains and party lines to make the necessary budgets.
Is there anyone in particular you would like to thank for what you have achieved?
As I said before: so many of my colleagues, both former and current. My parents, who brought me up to be socially involved. My family and friends for their interest and support. My partner and children who give me the space to be so passionate about my work, but who also yell ‘stop’ from time to time. And the many people with autism who have accompanied, inspired, touched me.
Do you have a final message for the reader?
Embrace diversity. It enriches society.