by Maria Elena Sini*
Lucia looks younger than her age: she doesn’t apply makeup as her classmates do, she doesn’t experiment new strange hairstyles or hair colours like other girls of her age, she isn’t a fashion victim but she always wears jeans and a black hooded sweatshirt. Only the image is sufficient to describe her “uniqueness”. Lucia has Asperger’s syndrome, a pervasive developmental disorder related to autism that doesn’t present in all people who suffer from the same set of symptoms. Lucia has limited social relations and often expresses her discomfort zoning out from the class. When Lucia breaks the connection with the rest of the world she covers her head with the sweatshirt’s hood and isolates herself in another reality through drawing or typing furiously on the keyboard of her computer game. She is thus able to implement some sort of “escape” from reality unsatisfactory, boring and anonymous, finding refuge in a virtual environment. She has an unusual self-centeredness with a lack of concern for others and their different points of view. Sometimes her voice has an unusually high volume and she looks awkward and clumsy. Lucia lacks the natural ability to understand what isn’t said explicitly in social relations and in the same way shows it difficult to communicate accurately her feelings or her own emotional state. She is not able to read facial expressions, therefore she often doesn’t understand a joke.
Even small changes are upsetting and cause real panic attacks which aren’t a mere transient discomfort, but an abnormal reaction which limits the ability to perform usual activities, due to the altered function of certain brain circuits. This response severely interferes with psycho-intellectual performances, preventing her from fixing the mind on specific situations and problems and not allowing her to process them.
Lucia has a good language property but often her way of speaking is pompous and pedantic. Her circumscribed interests, such as Japan, drawing and fairy tales, are pursued obsessively, but she is really an expert in these fields. A few days before the end of the school year Lucia gave me a beautiful drawing that shows how in the future she could be a children’s book illustrator, a career that would allow her to combine the passion for drawing and that one for fairy tales.
Hans Asperger called his patients “little professors” because he noticed that children or teenagers could have a wealth of knowledge in their fields of interest equal, if not superior, to that of university professors. This is because individuals with Asperger’s syndrome have normal intelligence if not higher, but at the expense of a much lower capacity for social interaction.
Lucia has been one of my students in the last three years of high school and the description of her symptoms can make people understand the difficulties that have arisen in the course of time to be able to offer her a peaceful situation in which she could make progress in learning.
The teachers have always scheduled tests well in advance and have also avoided concentrating them in a short period of time so that the workload wasn’t so heavy as to create the anxiety that bordered in self harm.
But despite the efforts made our education system is still not adequate to accommodate the needs of students with her problems and then we had to find another way for Lucia ended the school in the least traumatic way possible so that she could, after graduation, focus on her interests and her passions. The search for a solution involved her family, however, contrary to what happens in general, were not simply agreed methodologies and appropriate strategies with teachers
Lucia’s mother in fact made a much more radical choice that has revolutionized her life: last year she faced the examination for the admission to the last class of the course and this year, taking a leave from her job, she attended her daughter’s class and prepared the High School Graduation Exam with her.
Someone might argue that this solution has powered Lucia’s dependence from her mother and she hasn’t been accustomed to face the world alone but rather the need for a person driving, typical of people with her syndrome, has been consolidated.
As a teacher of the class, who has dealt with this new situation, I would rather say that it was a positive experience that has enabled the class to better understand the classmate’s problems and has favoured the learning of Lucia who shared with her mother load of commitments without carrying everything on her shoulders.
During the period in which this situation occurred, by chance I came across an article by Temple Grandin, a designer of livestock handling facilities and a Professor of Animal Science at Colorado State University who says that her current success depends on her being autistic because this condition allows her to dwell on tiny details mentally experiencing the different solutions to be adopted. Even though she was considered “weird” in her young school years, she eventually found a mentor, who recognized her interests and abilities. Later she developed her talents into a successful career as a livestock-handling equipment designer, one of very few in the world.
Now she holds conferences around the world to explain how, with time and with the right support, has gone from embarrassment to pride for her situation. Today she has a brilliant career and invokes the intervention and support of the teachings that can solve the problems of autistic children, fighting unfit behaviour and instead favouring those activities that enhance the characteristics of people who have a specialistic mind, like her and Lucia, because they can excel in their field of interest. The heart of her message is this: “Rigid academic and social expectations could wind up stifling a mind that – while it might struggle to conjugate a verb – could one day take us to distant stars.”
Considering that there aren’t many successful experiences to refer, I think that Temple Grandin’s biography doesn’t condemn our way that has allowed Lucia to bring out her peculiarities without experiencing a too strong discomfort.
I suggested that Mara, Lucia’s mother (in this story only their names are fictional, nrd), read a few articles of Temple Grandin and within her pages she found encouragement and hope to fuel her day-to-day journey through her daughter’s autism.
During the High School Graduation Exam Mara, having poured a few tears to break the tension, told the teachers what is Asperger’s syndrome and how it feels to be the mother of a girl with this problem.
Lucia instead explained in her examination the role of fairy tales in the child’s growth. These fantastic stories indeed provide symbolically tips on how to deal with existential issues and thus arrive without damage to maturity. At the end of her talk she received the congratulations of teachers for the wideness and richness of her vocabulary.
Problems of course are not over, but meanwhile mother and daughter have overcome this hurdle and have shown that understanding for the difficulties, searching for solutions even unorthodox, the synergy of a caring and courageous mother with open minded teachers can help children as Lucia in overcoming highly traumatic situations.
* Temple Grandin’s TED talks was an exciting discovery that has allowed me to better understand the dynamics of Asperger’s syndrome. I’d like Professor Temple Grandin knew that her story full of difficulties, but also of achievements and successes, has offered a new perspective to Lucy and her mother. For all these reasons, we thank her from the bottom of our hearts. (M.E.S.)
** In considerazione dell’importanza di questa storia, e del grande interesse che ha suscitato anche all’estero, ripubblichiamo in inglese il post di Maria Elena Sini, che ne ha curato personalmente anche la traduzione. (P.C.)