Children and autism in Luxembourg: The current response

It's hard to find conclusive data on how many children are currently living with an autism diagnosis in Luxembourg. What we do know for certain is that diagnoses have rapidly increased over the last 30 years, as well as our understanding of the condition's prevalence.

Available statistics echo this sentiment. At the turn of the nineties, it was estimated that autism affected five in every 10,000 people. Fast forward to 2025, studies have consistently found that this estimate, if ever true, is far removed from the current reality. Globally, one in 100 children now receive a diagnosis, marking a prevalence increase of 178% since the year 2000.

Going by these figures, autism affects roughly 6,500 people in the Grand Duchy, placing pressure on a system that has a lot to offer but is still stuck trying to iron out the creases in its response.

Early diagnosis and preschool care

Early diagnosis and intervention for a child with autism drastically improve the chances of positive outcomes and mitigating effects of the condition. Before entering formal education, identifying signs of autism and obtaining a diagnosis fall on parents and the advice of their respective health professionals. At the preschool age, signs of autism are often undetectable or mistaken as other behavioural traits.

Equally, most parents are not medical professionals or have firsthand knowledge of autism. Without training or information on what to look for, the majority of children remain undiagnosed until reaching the age of three.

When a child has been diagnosed before entering primary school, the Maison Relais, overseen by the Luxembourg Red Cross, provide crèches that accommodate a wide range of specific educational needs. They are therefore supported by the Ministry of Justice as non-profit foundations (ASBL).

As an ASBL, they can provide extra personnel equipped with tailored tools, resources, and training to help children recently diagnosed with autism.

However, the system does not guarantee that every child can secure a place, with waiting lists being long and resources and available personnel varying from one municipality to another. Thankfully, there are initiatives, such as Incluso, that help fill some of these gaps by providing consultancy and training to preschool education staff.

But, depending on where you live in the country, it remains luck of the draw.

Primary and secondary school

When children affected by autism reach the age of entering formal education, the government, by assessment of each child's needs, offers the ability to adapt how content is taught, provide in-class support and, if the option of attending school is not the best course of action, educational alternatives.

To their credit, the commitment of the Ministry of Education, Children, and Youth (MEN) towards inclusion and diversity should be commended. The objective to tailor schools to the specific educational needs of each pupil, albeit ambitious, is the type of forward-thinking policy that should be welcomed.

And, according to MEN, their approach seems to be working: "Less than 1% of pupils in Luxembourg are educated in specialised educational institutions, indicating a high inclusion rate."

At the primary school level, MEN commits to placing specialised teachers on site, supported by teams that work directly with students to ascertain the best educational responses, looking to further this support with future additions of in-class assistants to aid specialised teachers where necessary.

Upon reaching secondary school, inclusion commissions for each school act to inform pupils and parents about available support and to define appropriate measures to be adopted for pupils. These commissions are aided in their decision-making by the National Inclusion Commission and the Reasonable Adjustments Commission.

How this works with autism

On paper, there is robust support in place and there are plenty of children and families who benefit from this system. However, when it comes to catering for the educational requirements of autism, there are certain needs that are persistently hard to meet.

"It's difficult to find enough personnel… you have to [additionally] find people to train them because autism is so specific. And you have to learn to understand how people with autism think… their brain works differently. They think differently", explains Corrine Wuidar, psychopedagogy manager at the Luxembourg Autism Foundation.

"If you want to work with them correctly, you have to take their point of view but also to understand their way of thinking", she adds.

A lack of personnel specialised in working with children and young adults with autism remains an issue, not helped by the level of training required. "It's [necessary] to find people and to train them… it takes time. It's not, for example, [like when] you need a secretary… you find one… you take one… and in two months you see if they can work… you need between one and two years to really understand", says Wuidar.

Autism can also manifest in behaviour that not only disrupts the learning experiences of a diagnosed individual but of their peers too. Some children require specialised care that often entails attention to a level that far exceeds those of others.

The difficulty of finding professionals to fill these supportive roles limits the choices of some parents, often resulting in children being frequently moved from one education facility to another and decisions to be made in other areas of life, such as where to live and work. Coupled with an asymmetrical distribution of funding, families are consistently confronted with tough choices to find the best results for their children.

Funding and information

"Sometimes the financial possibilities or the possibilities to engage professionals enough to get to the right point of real and good inclusion are lacking", says Wuidar, who agreed that the problem is not the intent of MEN; the will to help is present, but resources are not always adequate to meet these ambitions.

Relevant information on available resources for families can also be hard to access, repeating a common trait of life in Luxembourg: state support is available, the necessary information to obtain it, however, is often not.

In positive news, last month saw the introduction of Dalza, an innovative platform that looks to streamline care for neurodivergent children by linking together parents, therapists, educators, and the state – all while providing relevant information in one place.

But this does raise the question, why is information not more readily accessible and consolidated on government platforms?

Associations

The state's response to autism, for all its good intentions of educational inclusion and support, does fall short in some areas. Parents are often overwhelmed not only by obtaining a diagnosis and the realities of a positive diagnosis but also by evaluating which of the many options would work best for their families.

To help fill some of these gaps, predominantly parent-initiated associations offer information, guidance, and support to those navigating the system.

Two associations at the forefront of autism are the Luxembourg Autism Foundation (FAL) and the Autism Awareness Association Luxembourg (3AL), with the former founded in 1996 and the latter in 2019.

FAL, the more established of the two, in addition to awareness campaigns and providing training services for both families and people working with autism, has multiple sites across the country, with residential and activity services in Munshausen, Rambrouch, Belvaux, and Steinsel.

"[The parents behind FAL] wanted to create everything that their children need here in the country. And that's why we began", explains Wuidwar. Speaking of when the FAL was formed, she recalls that "everything was missing… the possibility to get a proper diagnosis. It was impossible in the country."

3AL, much newer in its conception, concentrates on spreading awareness, normalising autism in Luxembourg and promoting early intervention and "tailored and advanced" treatments. Also, like FAL, 3AL provides training and support to families and organises autism-friendly activities and events.

"The two main objectives of the association are to create a network of parents and therapists and to promote applied behaviour analysis – a very well recognised therapy that is not recognised in Luxembourg", explains Annalisa Destefanis, applied behaviour analyst and president of 3AL.

Both associations hold inclusion close to their missions and, when asked, highlighted the challenge of public awareness and misconceptions of autism as pressing issues.

"With the public, there are still some attitudes that need to be addressed and there are some attitudes that need to be changed in terms of inclusion", stated Wuidwar.

When asked what could be done to help with the inclusion of autism, Destefanis added: "I think to share awareness, to make others understand the issue of an autistic child. How, with a little bit of effort from both sides, we can be more open and include children… Not to put just the label, you are a person with autism, but you are what you are, with your interests, your passions, your talents… that is what the people need to understand."

What's next?

The ambitions and provisions of the response to autism in Luxembourg have clearly come along away and represent a desire of the government to listen and react to parents. There is the overriding sense that things are moving in the right direction.

But what is currently in practice sometimes veers from the self-proclaimed successes of inclusion and the somewhat premature boasting of less than 1% of children in Luxembourg requiring specialised educational institutions.

A need for more trained personnel, spreading of financial resources, access to information, and public awareness persistently hinder families seeking support.

If the majority of children are not receiving early diagnoses or adequate assessment until later in life, perhaps more than 1% with specific educational needs do require closer care outside of mainstream schooling, it's just the resources have not stretched that far yet.

As with many causes, raising awareness and educating the public are central to ensuring understanding and support for holistic policies that enable families living with autism to fully participate in society.

In terms of awareness, there is a lot that still needs to be done.

Part 2 looks closer at the lived realities of those in the system, life with autism in Luxembourg, and what more we all can do to include this community.