The rise of autism and how we understand it

Most readers, even those who spend little time with children, cannot have been immune to the increased presence of autism in everyday life.

Data taken from around the world consistently shows dramatic increases in diagnosis in both children and adults. For instance, US studies performed from 2011 to 2022 found a 450% increase of diagnosis between the ages of 25 and 35. And, as disclosed in Part 1 – Children and Autism in Luxembourg, the condition affects roughly 6,500 people in Luxembourg.

Along with this, it is hard to miss a new willingness to discuss and accept autism, in addition to other forms of neurodivergence. Not to mention greater representation in culture: celebrities emboldened to disclose their diagnoses, sitcom characters and their unsubtle hints, even dating shows starring individuals on the spectrum. 
 
Autism has cemented itself in the public gaze, implying positive strides in terms of awareness and surrounding conversations. However, the public's gaze is often accompanied by misinformed imagination. As the condition becomes more normalised – even glamorised – the risk of diminishing its impact on affected families rears its ugly head.

Cassie and Alfie 

Cassie, who is English, works in the capital and has lived all of her life in Luxembourg. She is a single mother to Alfie, 10, who was diagnosed with Level 3 autism at an early age.
 
"It was his nine-month checkup… I'd noticed a few things… he wasn't smiling the same way as other children…. We went to a paediatrician, who then referred us to an autism specialist. [The specialist] then worked with a psychometrician… together they officially diagnosed him at 18 months old", Cassie explains. "He needed one-on-one attention and supervision. With young kids, there can be a lot of violent symptoms... aggression, biting, self-harm, so he needed that help when he was young as well."

Cassie and Alfie, after recognising signs of autism and consulting medical professionals, experienced little difficulty in obtaining an early diagnosis. Alfie now attends the Centre pour enfants et jeunes présentant un Trouble du Spectre de l’Autisme (Centre for children and youths on the autism spectrum, CTSA), in Weimerskirch.

Cassie continues: "We've been lucky to get a spot, and there are only limited classes across the country…I know for a fact that if he wasn’t in this environment he wouldn't be where he is now. The safe and understanding environment has allowed him to grow in confidence and feel secure in himself all the while providing him with tools and coping mechanisms to deal with the more difficult and overwhelming moments.

"He is so authentically himself; a very happy, loving, intelligent, and affectionate boy, who is surrounded by people who believe in his full potential. But that's our journey, to be able to follow that path."
 
Although it has not always been the simplest of routes to get him to this point.

Following Alfie's diagnosis, he attended several crèches, at times with Cassie finding herself having to pay for extra one-on-one care. After preschool age, he attended a Luxembourgish school, at which point Cassie and education staff "realised that Alfie needed more and different types of support and help than the mainstream school system could offer...."  
 
Cassie found that information on available options was hard to come by, especially with important choices that had to be made quickly for Alfie: "They were very much pushing this strong stance on integration – 'we try and keep kids in mainstream school'. As a parent, this was my first time doing all of this. When they're saying that he should be staying in a certain school as long as possible, you just believe the professionals… at the same time you’re reading horror stories online about specialised schools for autism."
 
At first, finding consolidated information on autism and the services and support available to parents and their children was an ongoing issue for Cassie and Alfie.  
 
“If you don't dig, you can't find [services for autism]. I've come across things and thought, 'Why has no one told me about this?' Even with financial support. There were things that I wasn't aware of that I was entitled to as a single parent", she notes. 
 
Putting certain fears aside, at the age of six, after it was suggested that Alfie try the CTSA, he started a two-week trial at one of their centres.  
 
Created in 2018, CTSA consists of 18 government-run sites across the country that advise and support children and their families in public schools and provide education specifically created for those on the spectrum. 
 
"We gave [CTSA] a try and straight away I knew this was the place for Alfie. He's got such a good bond with his teachers, and we have been very lucky. But every year it's kind of like, 'is he going to stay here or is he going to be moved to a site further away where his commute could go from 15 minutes to over an hour?' [The centres] all seem to be quite out of the way for us, except for this one."
 
As part of the services provided to Alfie, he has a bus monitor assigned to him who arrives at his house 15 minutes before the centre's bus comes to collect him. "We have someone who is very kind and sweet and understands Alfie – they get on really well. He comes up, they play a little bit, they chat a little bit. It's to ease that transition from home-to-bus-to-school, that can be quite difficult for people on the spectrum… leaving the home without their reference person. Who, for Alfie, is me."
 
The presence of personnel like this also creates a reciprocal channel for Cassie, the Centre and afterschool care team to relay information to one another about how Alfie is doing. "Obviously a big part of this is that Alfie can't speak. He can't just tell me how his day's gone. He can't tell his teachers how his evening went."
 
In Alfie's case, the Luxembourgish government has eventually provided him with care that works for his specific needs. Aided by an early diagnosis, Cassie, albeit with some bumps along the way in getting the right information – and a lot of determination – is currently provided with support that is invaluable for Alfie’s continued development.

Nevertheless, after all the hard work to achieve that, the fear of him being transferred elsewhere and disrupting Alfie and Cassie's lives still lingers: "I'm very much someone who will fight for every bit of help. I'm not going to be ashamed of him needing help or asking for the help – it's what he's entitled. I've always pushed for as much support as he can get."

Awareness and inclusion outside of education 

The education system in Luxembourg seems to be well aware of the prevalence of autism and is trying to respond and tailor its schools accordingly.

Formal education, however, is just one part of life.

All children deserve the right to access and experience all that life here has to offer. A lack of awareness within the public continues to create further barriers to families trying to provide this for their children and perform what for the majority of us are the most common and stress-free of everyday tasks.

"I think the authorities and the ministries are much more aware of the importance to be inclusive and really they want that", says Corrine Wuidwar of the Luxembourg Autism Foundation (ASL), "from the point of view of the Foundation, that has always been there."

When it comes to outside of the government's response, Wuidar adds: "I think there are a lot of things that need to be done to sensitise the public over the inclusion possibilities and why inclusion is necessary, about autism and other conditions. I think the greater public needs still to do much more effort to be inclusive… People with autism have a lot to give to the society."

Cassie also spoke of being confronted by a lack of understanding when in public with Alfie: "You know? People do stare... don't understand. If I compare that with when I take him out in the UK – you'll always have some people who don't get it. But a lot more people are kinder and understanding – just aware. I feel there's so much more available in everyday life for people with autism in the UK. Whereas in Luxembourg I feel there just isn't.

"I just think it's crap that I can't take my kid to the cinema! I once tried to take Alfie to see Frozen 2, it was a disaster… he was just terrified… it ended up in three days of deregulation of his body and it was just a horrible week for us all. Just because we tried to go to the cinema… you feel like a bad parent.

"Whereas in the UK, we attended an adapted screening for people on the autism spectrum, allowing for a more sensory-friendly environment and a general understanding that the audience will likely not be able to sit in silence for the duration of the film… providing a safe and judgemental free environment. Alfie adored it. This type of accessibility in Luxembourg would make a huge impact on our daily life."

How to improve awareness and inclusion 

Positive strides have been made to accommodate people with different sensory needs by the likes of Kirchberg shopping centre introducing 'Quiet Hour' between certain hours on Tuesdays and Thursdays. Small steps like this go a long way to include individuals living with autism in everyday spaces, also spreading knowledge and understanding of their specific needs.

When it comes to increasing knowledge of autism, president of the Autism Awareness Association Luxembourg (3AL), Annalisa Destefanis, puts it down to "information, awareness, explaining the difference… how with a little bit of effort from both sides we can be more open and include children."
 
Cassie suggests increasing inclusion by the government putting pressure on companies through "corporate social responsibility initiatives – especially locations that are centred around kids, like trampoline parks or swimming pools. Just a push to make these more accessible and explain why."
 
Even if there were to be an increase in awareness, leading to more inclusion, it does raise the question as to whether current services and available personnel would be in place to handle the demand.  
 
Already autism-friendly activities and events organised by FAL are overwhelmed with applicants. 
 
"There is still a lack of services. I don't know, maybe we have 100 families that want a child to do a specific sport activity, but you have few places where they can find that…The will is there, but the practical new services or new places aren't", says Wuidar.

What we can do 

As the visibility of autism continues to grow across Luxembourg and the world, it is necessary that public awareness and understanding accompany that growth.

Currently, there is a long way to go.

This also resembles the landscape that Cassie sees: "I think a lot of people have heard the word autism and maybe have seen one or two extreme cases or not so extreme cases and think they know what it's about. But, they don't! There's just so much in between."

Similar to how obsessive-compulsive disorder was hijacked to describe any obsessive trait, autism, accelerated by its growing online memeification and other referential depictions (à la Love on the Spectrum and Rainman), has been rendered as shorthand to describe nearly any traits that don't fit the strictures of what we see as 'neurotypical'.

'That was a bit of autistic of me', 'They must be somewhere on the spectrum', or 'My autism is showing' and the like are increasingly slipping into our vernacular. And, of course, there is the curious phenomenon of self-diagnosis. Both trends that reinforce flawed beliefs and belittle the everyday pressures families managing the diagnosis of a child face in Luxembourg.

Autism affects every child differently; it is less visible with some and requires considerably more care with others. The effects on parents and surrounding families in trying to provide a respected place in society, an education for their child, the simple pleasure of watching a movie, however, are often shared. And, commonly, just as hidden.

Awareness and inclusion start with small changes. The government is set on inclusionary policies and associations play vital roles too; World Autism Awareness Day and the Light It Up Blue campaign help visibility, but more is needed from the general public.

Just by being conscious to the fact the world is perceived differently by others – how people react to noise, a bright room, people, touch – takes little effort.

When you think about it, being appropriate in asking questions, allowing yourself to be a little bit late if a parent is struggling with their child, wanting to understand and not exclude are also all pretty minor adjustments in a world designed for the 'neurotypical'.

If more people were to make these choices, it would certainly go a long way towards making autism's inclusion in Luxembourg a lot easier.