This week’s blog post is about a 16-year-old Danish para swimmer Maria Kjer Rasmussen. Due to Maria’s age and the language barrier, we interviewed Maria’s mother for this post, but Maria was both informed and involved in the editing process!
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Context is important, so I’m going to dedicate a few paragraphs to this topic before moving on to Maria’s story...
Maria’s mother Lene Kjer Rasmussen and I first connected in December 2022 when we met as members of the Virtus Sport ii3 Autism working group. For those of you who haven’t seen the announcement of this new category; the ii3 category is for athletes who are Autistic, but unlike all existing categories – who are not affected by intellectual impairment. This is the first category of its kind in sport and marks a pivotal step towards recognition of and support for neurodivergent athletes.
As well as seeing the introduction of this category as overwhelmingly good, I have some caveats to its continued positivity:
1️⃣ Neurodiversity refers to everyone’s unique neurology and behaviour traits and is EVERYONE’S responsibility to understand (and support).
Neurodivergent athletes and staff exist in, and belong in, all teams, clubs, and organisations.
Therefore, the introduction of this category SHOULD NOT be an opportunity for able bodied sports teams, clubs, and organisations to neglect their responsibility to understand and support Autistic and other neurodivergent athletes, because they “belong elsewhere”.
2️⃣ Autism and neurodiversity are spectrums, and every individual occupies a different space.
Autistic athletes (or athletes with Autism – depending on the language they prefer) belong wherever THEY choose to be. If they prove themselves to be capable of training and competing amongst their ‘neurotypical’ peers, then they should be supported to do so.
3️⃣ Finally, and this a broader comment regarding the separation of every other category besides able bodied, neurotypical, mainstream…
The separation of able-bodied sport and ‘everyone else’ suggests not only difference, but abnormality, a lack of comparative capability, and a lack of comparative worth. This is wrong.
Wouldn’t it make a pretty epic statement – wouldn’t it inspire many more people to see more integration of events?
What would true equity in sport look like?
What is clear is that while equity does not exist in sport, the introduction of categories such as Autism without intellectual impairment, have allowed athletes such as Maria Kjer Rasmussen to receive the understanding and support they need to continue participating and competing in the sport they love – the sport that is in some ways their lifeline.
Maria is a great example of someone who fits into the “misunderstood and neglected to date” bracket – someone who both has Autism without intellectual impairment and requires extra understanding and support that is currently unavailable within most ‘mainstream’ sports teams and organisations. Therefore, for Maria, the introduction of the ii3 category was essential in allowing her to continue training and competing at the highest level in Denmark.
It was interesting to hear about Maria’s childhood from the perspective of her mother; because where Maria may have felt the negative impact of people’s assumptions and limiting expectations, her mother heard them first hand. Marias parents were told in no uncertain terms that they “should not expect Maria to receive a normal education, to graduate, or to live like other children” due to her difficulties and differences. This determination was made very early on.
Lene described Maria as a “quiet and smiling child” when at kindergarten, school, or anywhere outside the home, but this is because she had learnt to mask her difficulties from a very early age, as many neurodivergent individuals do. Whenever Maria arrived home to her “safe space”, the mass of emotions she had held in would inevitably ‘explode’ or implode, and she would be utterly exhausted.
The difficulties and ‘meltdowns’ at home led to Maria being diagnosed with Infantile Autism at the age of 7. Maria’s parents were told that 80% of children diagnosed with Infantile Autism, regardless of their IQ, would never be able take care of themselves. Whilst advocating for her young daughter, Kjer was told by one health professional: “you’re lucky she’s so young and pretty…” It’s hard to know who to trust and what advice to take when professionals display such assumptive and antiquated opinions. For this reason, Maria’s parents took matters into their own hands.
After introducing Maria to swimming, her parents quickly realised how fundamental the activity was to her mental health and wellbeing – far more than expected. When Maria began swimming on regular basis (from 2 times a week to most days), her mood lifted, and there was a marked behaviour shift when at home. She found relaxing easier. She found sleeping easier. In Kjer’s words, she was “soft like butter” every time she returned home from training.
That was the result that those around her saw, but what did it feel like for Maria? What was it that swimming provided that helped so much?
For Maria, being under water gave her that time she desperately needed to decompress and destress: a break from the barrage of overwhelming sensory input that most others didn’t perceive – let alone understand. She could learn without listening and communicate without talking. Maria would often wait underwater before pushing off for a lap, just so she could watch how the other swimmers moved. Having a coach tell her how to swim would never be as impactful as watching and copying; swimming allowed Maria to figure this out for herself. Having the opportunity to learn in and grow in a sensorially safe environment, that suited her learning style, allowed Maria to excel very quickly. Almost immediately she was defying the expectations (or limits) imposed by others.
While swimming provided temporary respite, a place to feel capable, and to feel safe, Maria still struggled to navigate public school – to fit in and to feel understood, and so by the time she was in 5th grade, she was experiencing numerous significant mental health difficulties… In response to this, her parents enrolled her into a special needs school, but again, Maria didn’t fit into this space either. For over 3 years Maria struggled with the social aspect of SEN school due to her functioning differences, with Maria being socially ostracised due to her higher intellect. During this time swimming became even more important to Maria, as it was the one place she could truly connect with likeminded people in a safe and structured environment – she loved it. Although SEN school was difficult for Maria in social terms, it did provide her with academic support. She was able to learn in her own way and in her own time, and she grew in confidence. This allowed her to pass her 9th grade exams, which in turn allowed her to progress alongside her teammates from swimming, and to continue feeling socially included.
Although Maria was able to maintain contact with swimming throughout these years, the difficulties she faced at school inevitably bled into her athletic performance. For Maria, her negative self-image pervaded every aspect of her life, and it made progression almost impossible. At an early age, Maria had been one of the best age group swimmers in Denmark, seemingly on the path towards success, but once she became aware of others’ perceptions of her, her performance stalled. Where she had very early on excelled far beyond others’ expectations of her, she now struggled under the weight of their limitations.
This is a story I see far too often in regard to neurodivergent athletes…
Neurodivergent characteristics lend themselves very well to sport; neurodivergent athletes become highly successful, very quickly; in seeking betterment from a misinformed lens, others question why a neurodivergent athlete thinks or behaves differently; the athlete becomes hyper-aware of their condition – they’re made to feel different or wrong; this impacts their mental health, and it impacts their performance… It looks like they struggle because of their neurodivergence, but in fact they struggle because of a negative self-image imposed upon them by others.
Fortunately for Maria, her parents were prepared to advocate for their daughter, regardless of the barriers they all faced. Lene saw how Maria struggled to fit into the education system, and she saw the difference swimming made to Maria when she felt able to access it. Lene therefore made two very bold decisions for the sake of her daughter. She took time out from her work to educate Maria – to teach her, not so much academics, but the life lessons that many Autistic people need to learn explicitly (and so often miss out on).
Lene also hired a swimming coach to work with Maria one-to-one, and the combination of these actions allowed Maria the ‘headspace’ she needed to recover, learn, and begin to regain her confidence. According to Lene and her husband, the financial implications of these decisions were significant, but they saw it as the only way to keep their family together, and to support both of their children most effectively.
Perhaps if more sports clubs, teams, organisations, and schools were better equipped to support neurodivergent individuals, families like Maria’s wouldn’t have to take such drastic action just to provide their child with a safe and structured environment to learn, to self-manage, and to progress…
Maria’s recovery hasn’t been easy, but it has been steady and continued...
For a long time, she struggled to come to terms with no longer being the best swimmer in her age group... It was hard for Maria to be different, to see her teammates progressing whilst she was struggling to simply understand where she fit into an equation that seemingly didn’t account for her.
She also felt incredibly isolated. Although swimming provided social inclusion, she still felt different to her peers. Once she became aware of her diagnosis, she became aware of the distinct lack of role models. This only added to her negative self-image and self-doubt. If no one else has made it in sport – why would she?
As someone who has Autism without intellectual impairment, she is hyper-aware of how people around her view her and treat her. She’s also hyper-aware of how they treat others with physical and intellectual disabilities, because when people meet Maria, they most often don’t see or sense her Autism straight away, and on many occasions, she’s heard first-hand the stigmatising opinions people harbour regarding Autism and other disabilities. It’s both confusing and distressing for Maria. She doesn’t completely understand why people think this way, but in knowing they do, she feels far less inclined to talk about her own challenges, or to advocate for her needs.
If she ever discloses her condition, people assume that she is either very bright or very stupid… not that she is a human being who is as unique and complex as the next.
The introduction of the Autism ii3 category allowed Maria a pathway to continue participating and competing as an elite swimmer, but she is currently the only female ii3 swimmer in Denmark, and there’s still a lot of progress to be made before she feels fully included in the Danish National Para Swimming Team.
Lene talks wistfully about the moment Maria met a fellow ii3 swimmer at a competition in Poland last year: “all of a sudden, she came out of her shell. She seemed like the old Maria again – the Maria we knew before she realised she was different…” As heart breaking as this is to hear, it serves to highlight two important topics:
➡️ Autistic people (or people with Autism), contrary to misinformation, do have social needs!
They just process information differently and therefore think and communicate slightly differently…
➡️ Role models and representation are so important if we are going to inspire people to break the mould and push forwards.
Too many Autistic and neurodivergent people feel they’re not capable because someone said they’re not; not because they actually aren’t capable. There’s always a way to achieve something, and we need to encourage innovation and celebrate difference to ensure those who don’t fit the mould do have opportunities to achieve and inspire.
So where is Maria now?
🏫 She’s in 10th grade and is back in public school!!
🏊 She’s training and competing as an ii3 athlete under the Danish National Para Swimming Team, and she is also training and competing in non-para competitions.
⏳ Her status as a national team athlete has allowed her to extend her education by one year, which is crucial for Maria considering the journey she has been on to date. The extra year of study will give her the time and space she needs to complete her education, to experience integrated education, and to train and compete as an elite athlete alongside.
🚴♀️She cycles to school and training – anywhere from 15-40k a day on top of swimming training!
👊 She likes to be independent, to try new things, and grow.
💗She has friends that she has disclosed her Autism to, and who accept her as she is. According to Maria, she “couldn’t be happier” with this.
💪 She has far fewer meltdowns and according to Kjer, has “strength to meet the world”.
What does Lene do for Maria now?
She asks her questions to help her mentally prepare for any environment she is going to tackle alone.
She talks through A, B, C scenarios with Maria. Usually, she will only ever have to follow through with plan A but talking through B and C – accounting for the ‘what ifs’ – is fundamental to Maria feeling calm and capable. It enables Maria to be independent.
She helps Maria see the grey scale in her black and white or binary thinking.
She’s there if Maria needs her – and that’s all really.
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🔗 Find out more about the Virtus ii3 category here