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(Luxembourg) Families wait 4 yrs for ASD dx; "society in general is not ready'

May 15, 2024, RTL Today: Luxembourg families face four-year wait for autism diagnoses

Luxembourg's Autism Foundation is grappling with a staggering four-year waiting list for autism diagnoses, reflecting a critical shortage of resources amid rising demand, which has left many families in a distressing limbo.


One of the two institutions that diagnoses autism in Luxembourg has said it is currently struggling with a four-year waiting list. The Foundation Autisme de Luxembourg (FAL) told RTL Today that last year 398 individuals contacted them in relation to a diagnosis. Of this number they were able to process 123, less than a third.


A spokesperson for the FAL said that the organisation is doing its best to reduce this backlog, which is due to limited resources to deal with an ever-growing demand for their services. It is continuously in contact with the Ministry of Education in relation to the need for more resources in order to tackle the significant waiting list, it said. . . .


According to their 2023 figures, a total of 23 children under the age of 6 received an autism diagnosis. Within the age group 7–12 there were 22 diagnoses given. Between the ages of 13–19, a total of 25 diagnosis were carried out. There were a further 53 diagnoses in the 20+ years category.


The Unité Autisme at the Centre Hospitalier du Luxembourg (CHL) also carries out autism diagnoses. Information on their wait time and the breakdown between adults and children, was not provided when contacted by RTL Today. "Our department does not wish to comment," said the spokesperson. . . .

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This four-year waiting list has a knock-on effect for children with autism who need to secure appropriate schooling as they must first have an autism diagnosis.


Julianna*, the mother of a young child with autism, is facing a worrying wait to see if there will be a place available in a special class this coming September.


Currently, there are 32 children on a waiting list for only two available places at this particular school, she told RTL Today. This information, she confirmed, was relayed to her by the CTSA (Centre pour enfants et jeunes présentant un trouble du spectre de l'autisme). . . .


"It will be impossible to stay in the current school because of the challenges. The routine has to be very set and predictable. There are a lot of challenges for teachers," she acknowledged. Her child, she said, is moderately autistic and non-verbal, but to the casual observer resembles an average, healthy and active child.


With such a lengthy waiting list for a diagnosis this is creating an intolerable situation for any parent who needs a school place for their child, she pointed out.


When this information was put to Mr Laurent Dura, Head of the Inclusive Education Department at the Education Ministry, he said he could not confirm there was such a waiting list for schooling: "The idea is that when a child needs some special arrangements then the arrangements should start as soon as possible. So, there is no waiting list. I think that there is some misunderstanding of the idea of a waiting list. Of course, it [the schooling] doesn't always start immediately, the next day or the next week, but sometimes it takes some time to put in place. There is no such thing as a waiting list in Luxembourg."


In terms of school options, Mr Dura added that there are various arrangements that can be put in place and it is always related to the child's needs and the evaluation of the situation. The inclusive education policy in Luxembourg means that children with special needs should go to regular school "if it makes sense and everybody agrees, especially the parents," he explained.


"Of course, sometimes regular school is not the right setting then there is the option to go to a class of a competence centre like CTSA, which is the competence centre for autistic spectrum disorders. Also, there is the option in between to go to regular school and then go for one or two days to a special educational setting. In the end it's the parents who decide to agree or not to what is proposed," he emphasised.


On the edge of the system


Concerning the overall awareness around autism in Luxembourg, the parent said she feels that children and adults alike need to be educated about the condition, as she witnesses a lack of empathy towards her child on a regular basis. . . .


According to the parent, there are inadequate facilities for children with autism in this country and the stress of managing the day-to-day is only compounded by the precarity around future adequate schooling opportunities for her child.


"Luxembourg is amazing for people coming to live here but schooling is difficult. The teachers are not trained correctly. There is a lack of educators. There are more and more children and adults on the spectrum, about one in 60, which is a huge number, and society in general is not ready. They are on the edge of the system even in a rich and well-developed country like Luxembourg. Education should start at an early stage for children's parents and educators. We are many and our lives are completely different from other people's. Society only shows empathy when they see someone in a wheelchair for example."


In terms of what the options will be in September, the parent is hoping that a school place will become available. Otherwise, she said, she is not sure where she will turn.



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