The topic of autism is sensitive and I hope that through my illustrations people can feel and understand the challenges that Julia goes through and hence support her and all the others through this journey.
May 27, 2022
‘Minimum inclusion gives huge joy’, says Sylwia, mother to a 14-year-old with autism
Julia is fourteen and a half, diagnosed with autism. She speaks Polish, English, and has recently picked up Ukrainian with the help of her parents.
In the future, she plans to be a hairdresser, a ‘vaccine maker’, or teach at a kindergarten for those with special needs. Because of her developmental disability, she cannot write freely and her mathematical and reading skills are very low for a 14-year-old.
I learned about Julia from her mother, Sylwia, a 47-year-old from Warsaw, Poland. She was the person who had taken Julia, a 3-month-old baby at the time, to a hearing test, where Julia had very poor results. It was Sylwia who noticed that Julia had asymmetries in the functioning of her body. It was her who alerted the doctors.
Ultimately, it was because of Sylwia’s motherly instincts and persistence, that Julia was finally diagnosed with severe autistic disorder.
Sylwia is a self-aware, very confident blonde who displays a mischievous smile. Her eyes sparkle when she recalls how she forced ‘the system’ to diagnose Julia. “I received some indications from my doctor, the paediatrician,” she says. “But it was like seeking in the blind to find the right places. I did it mostly through personal references from people who had the same problems.”
She enumerates the needs she had to address – logopedics, physical rehabilitation, psychological support – before stating it was not only the issue of finding these services but also of discovering what her daughter might need.
Autism is a condition with a very broad spectrum. Since 2013, the American Psychiatric Organisation’s DSM-5 classification has grouped the range of mild, moderate and severe symptoms under one definition, namely Autism Spectrum Disorder (ASD for short).
There is a great variety of symptoms which include auditory, sensory, and communication issues; reciprocity deficits in social and emotional dimensions; difficulties in developing, maintaining and understanding relationships.
This list is by no means exhaustive – there are numerous other symptoms related to autism that can be diagnosed by a professional in the field. In all cases, however, intensity varies from mild to severe.
The first thing I realised while discussing this issue with Sylwia is how the Polish healthcare system lacks standards and does not provide even the most basic consistency across maternity wards. In some hospitals (predominantly private ones) scans could take a mere few weeks, in other units the same, arguably basic procedures take painfully long, or are not completed at all.
Undoubtedly, it should not be only up to the parent’s perseverance whether their child is going to get appropriate care. Moreover, diagnosis is an opportunity for the healthcare system to provide the parents with reliable information, sources, the next steps, and support groups.
What is even more surprising, is that the above-mentioned standards have been practised in many European countries for the last several decades- including Germany, which neighbours Poland.
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Sylwia’s experiences allowed her to formulate what she perceives as the minimum standard that needs to be set and enforced by the government of Poland in order to achieve a goal of “no child being forgotten” – and by that, she means children with disabilities and those in foster homes.
The issue of financial support is paramount, as she estimates that without the state providing required services, it may require about 10,000 zlotys (about £1,800) a month to provide one child with needed services, including physical and speech and language therapy.
“I cannot imagine how people deal with this. I cannot imagine maintaining a regular job at those times when my daughter would be in hospital most of the time. If it had not been for my husband, who provides for the entire family, I am sure that no company would have accepted the level of engagement in Julia’s life. So it would drive me to poverty. People have to choose between work life or your child, as they cannot have both”.
I decided to use an animated style because I want to lighten the seriousness and emphasise the motivating message embedded in the passage. The background designs aim at conveying innocence and hopefulness.
Despite the fact that the access to resources allows Sylwia to provide for her child, no amount of money would remove the stigma faced by children with disabilities. It is there, in all circles of society, haunting both rich and poor.
“In the wealthy part of the society, where everyone is blonde and beautiful, and healthy, it is really hard to fit in,” she explained, adding that she knows of children with Down Syndrome who are “kept within the family” – a euphemism which means isolation and being kept hidden from the outside world as not to “damage family’s image”.
It is impossible to chart your friends, not to divide them friends between those who would either understand or at least try to understand, and try to cooperate and those who would not. It is just impossible to lead a regular life, for the entire family.
Autism alters one’s cognitive functions. Therefore a little sarcastic comment, a slightly unfriendly look, and – more often than not – straightforward bullying are extremely difficult to handle. Alone it could deeply affect the mental health of any person, but neuroatypical people have more difficulty in processing these and are targeted more often. In many cases, they report the feeling of being bullied daily for the entirety of their lives.
The illustrations are based on my interpretation of their close-knit relationship and Julia’s inner thoughts during daily events.
I am not ashamed when my daughter turns to people and asks them odd questions. At the same time, it is for some reason, very difficult for my son and my parents.
Without guidance, it is also not possible for Julia to socialise with her peers, as there is significant dissonance between how young she is mentally and the physical development related to puberty. Being very childlike, Julia does not understand social cues well – as she increasingly turns her attention to boys, it is very difficult for her to understand that her feelings are not reciprocated. “You cannot really blame other children for not being welcoming, given that they were not raised in such a manner. So if it is not encouraged or organised it would simply not happen”, Sylwia explains.
In the case of Julia, being discriminated against is a daily occurrence – she was refused additional classes as the school scheduled those during her same time slots for physical training, or during the tutor’s hour. It may not seem like much, but physical exercise is extremely important for Julia’s development while the tutor’s hour is the only time when she could be with her peers since most of her classes are individual. “She is kept totally isolated,” Sylwia sums up the previous school.
The school repeatedly attempted to exclude Julia from academic activities. Sylwia recalls the instances when she was simply not informed about additional history and language classes. Julia had been excluded from music, art, Spanish and physical training classes. “This is their approach: why to give a kid extra when they struggle with the minimum?”, Sylwia says. “The teachers had the nerve to approach me and tell me that my daughter is behind the rest of the group. I told them: what do you expect?”
Julia’s isolation was exacerbated by the COVID-19 pandemic to a degree when it was impossible for her to attain a social life. In reality of online schooling, it was only possible for Julia to retain attention if Sylwia was with her at all times, and it was impossible for Julia to go for longer than three hours. “I cannot blame that on the school. It was just very unfortunate”, Sylwia sighs.
By comparison to extracurricular activities, school seems to be almost mild. Mobbing in scouting organisations was very severe: three weeks before summer camp, Sylwia was informed how Julia would not be able to go as the organisation did not want to take anyone with a special disability.
Despite Sylwia’s offer to provide a professional assistant, the scouting organisation refused, claiming that Julia’s “participation would just make obvious to those scouts that she is being treated extra and they are not being treated equally”.
Sylwia also heard that her daughter is ‘slowing people down’ and parents of other children argued she could pose a danger to other participants because she is ‘larger’.