"When I was eleven I got sick. I fell into depression. I stopped talking. And I stopped eating. Within two months, I lost about ten kilos. I was later diagnosed with the Asperger's syndrome, obsessive-compulsive disorder and selective mutism. In practice it means that I only speak when it seems really necessary. "
"For those who, like me, fall back into autism spectrum, things are always black or white. We're not very good at lying, and we usually don't really care much about participating in the social game that seems to thrill the rest of you so much. I think, from many points of view, we autistics are the normal ones, and the strange ones are you".
"There are those who say that, having Asperger's, I would never have been able to put myself in this position. But that's exactly why I did it. Because if I had been 'normal' and sociable I would have signed up for a ' association, or I would have founded one. But not being very good at socializing I did what I did. "
Thus in some of his speeches on the climate and the climate strike, Greta Thunberg talked about herself and her neurodiversity condition: the Asperger's syndrome. He also talked about it several times on twitter, with the hashtag #aspiepower, for example on the occasion of the world day of autism, last April 2, claiming to be "proud to be on the autism spectrum". On August 31, however, she tweeted like this:
"I have Asperger's and that means I'm a bit different than the 'norm' at times. But, in the right circumstances, being different becomes a superpower. "
Of course, not all people with Asperger's syndrome experience their condition this way. There is a wide personal variability in how neurodiversity is experienced and welcomed, and the right circumstances and adjustments that Thunberg talks about do not always occur. Another famous person with the syndrome, the writer Susanna Tamaro, he used less enthusiastic words in his book Your Gaze Illuminates the World, defining the syndrome as his own "invisible wheelchair" or even his prigione.
What, then, is this condition? What does it consist of and what does it involve? What does this have to do with autism? On the occasion of the World Asperger's Syndrome Day, which is celebrated as every year on February 18, we take stock with the psychologist Giovanni Magoni, one of the founders of the CulturAutismo non-profit association and supervisor of the rehabilitation center for autism La casa di Michele, in L'Aquila.
Read also: Autism: what it is. Symptoms, causes, signs and strategies for parents
Although the term syndrome can be misleading it is not a disease, a disability or a handicap. "The most correct expression to use is condition of neurodiversity"Magoni explains. Specifying:" Neurotypical are the people who share the same way of organizing thought, while neurodiverse are the people who have a different way of thinking. Which certainly does not mean inferior. "
Basically, Asperger's syndrome is a condition characterized by a different cognitive style (a different way of thinking) than the more common one, which manifests itself with particular behaviors.
"Until a few years ago, Asperger's syndrome was considered a condition in its own right - therefore detached from autism - in the context of the great container of generalized developmental disorders"says Magoni.
Now, however, this is no longer the case: in the latest DSM, the manual for psychiatric disorders often called "the psychiatric bible", Asperger's syndrome as a separate diagnostic label is no longer there. The condition remains, of course, that it has been inserted within the broader category of autism spectrum disorders. "More exactly, it is a level 1 autism spectrum disorder, without intellectual and language impairment"Clarifies the psychologist. Basically, a mild form of autism." But outside the diagnostic field the term Asperger's syndrome continues to be commonly used and that's okay, because so everyone understands what one is getting at. reports ".
People with Asperger's syndrome share some characteristics with all people who fall on the autism spectrum. In particular:
"The fact - explains Magoni - is that the social world built by and for neurotypical people remains difficult to understand and 'manage' for people with autism and also with Asperger's".
How these difficulties manifest themselves can however vary greatly from person to person: "There are Aspergers who, finding the social world really too complex, try to avoid it as much as possible and others who, despite the complexity, continue to try to relate to others. and, while remaining neurodiverse, they manage to learn to manage some aspects of social behavior ".
People with Asperger's syndrome generally do not have significant language impairment, but they may still have some difficulties in this area as well, for example with respect to integration between verbal and non-verbal sphere. "Some people can speak without gesticulating, without looking the other person in the eye or showing a poor modulation of facial expressions."
And yet: language understanding is often literal (irony and metaphors can be very difficult to grasp) and it can be linguistic reciprocity is difficult, that is, the ability to conduct a conversation. "Usually conversations with a person with Asperger's syndrome risk being more like monologues," concludes Magoni.Read also: Asperger's Syndrome: How to relate to an Asperger's child?
Another typical aspect of the autism spectrum is the fact of having particular, very specific interests, which does not necessarily mean bizarre. "Specialists speak of 'narrow' interests, even if this term is disrespectful and seems to indicate something that is necessarily a limitation, while it can turn out to be a resource".
A bit of the superpower he talks about Greta Thunberg: "His interest in the environmental issue it is an example of very specific interest, but there is more "comments the psychologist." Very typical of Asperger's is also the perseverance with which Thunberg is carrying on his battle. Let's think about yours strike for the climate: to all the times she went to protest (initially alone) in front of the Swedish parliament: a non-autistic sixteen-year-old Greta Thunberg would get bored after a while and quit. Instead she continued and the fact of do not get tired of doing repetitive things too it may actually prove to be one of the winning aspects of Asperger's syndrome. "
People with an autism spectrum disorder prefer predictable events, situations, environments: this is the reason why they tend to prefer the world of objects to that of people, which are more unpredictable.
Even very pronounced sensitivity to certain sensory stimuli - light, or sounds, smells, colors, physical contact - can be quite common.
It is considered a possible manifestation of Asperger's syndrome but even in this there is a wide individual variability.
There is a common belief that Asperger's people, like people with autism in general, are "cold", unable to empathize with others. "In reality this is not exactly the case, but we have to distinguish between emotional empathy ed cognitive empathy"Magoni points out.
"People with Asperger's Syndrome may have no difficulty with emotional empathy: an Aspie child probably notices if mom is sad, although it may not behave as a neurotypical child would in the same situation. For example, it is not said that he is going to hug her to console her. On the other hand, it may be more difficult to actually succeed put yourself in the shoes of others, experiencing the so-called cognitive empathy ".Read also: On good terms: 4 tips to promote social relationships in children with the theory of mind
"As we have said, it is the difficulties with social relations or with communication, the 'narrow' interests, the preference for predictable situations, any sensorial peculiarities" sums up Magoni. Specifying that these are not easy signals to grasp: "This is why many people are diagnosed in late childhood, adolescence or even adulthood." And when the diagnosis arrives, you can re-read some situations from your past in this light.
"Let's take a very dictatorial child: this characteristic may simply depend on the temperament, but it can also be the typical manifestation of a person who, not understanding social skills well, creates a situation that he manages better, because he decides everything".
To "complicate" things is the fact that some people with Asperger's syndrome manage to adapt well to social dynamics after all, while not understanding them. In practice, they disguise themselves and this happens above all with girls, for whom in fact the diagnosis often comes later. It is no coincidence that the syndrome is given as more frequent in males than in females. "At the moment the official ratio is 3-4 males for each female, but it is possible that the difference is destined to decrease."
"Generally, parents who become aware of some anomaly - on their own or on the advice of teachers - bring it to the attention of the pediatrician, who sends them to the neuropsychiatrist. After the age of 18, the reference figure is that of the psychiatrist".Also read: 5 things to avoid with an Asperger's baby
"The diagnosis is made through specific tests, such as the ADOS and ADI-R tests, which evaluate the characteristics of behavior, even comparing them with those of the past if it is a teenager or an adult "says Magoni. But be careful:" The results of the tests are not enough: the clinical opinion of the specialist is also needed who formulates the diagnosis also on the basis of the behavior that he directly observes ".
There is still no certain and definitive answer to this question. However, we know that it is the combination of genetic factors that predispose to the condition, and environmental factors that trigger it. Environmental factors may include particular complications during pregnancy or birth or in utero exposure to certain toxic substances.Read also: Vaccines and autism: the answers to a mother's doubts
Magoni, who is not very fond of the term "intervention" applied to Asperger's syndrome, remembers that it is one neurodiversity and not a disease, so there is no need for cures or therapies understood in the classical sense. "It is as if the person with these characteristics had a different culture than that of neurotypicals, so the intervention to be done is more like a sort of cultural mediation between the culture of neurotypicality and that of neurodiversity".
According to Magoni there are two fundamental aspects of this mediation. First: it must start from the needs of the Asperger person. "With children it is a bit more difficult, but it could be the person himself who communicates what is bothering him, indicating specific aspects to work on. The intervention could therefore serve to teaching social skills or broadening interests to improve relationships with peers"In this sense, such interventions can be useful cognitive-behavioral, but it is also teachers, educators and parents themselves who teach skills. And for adults, the figure of the adult companion, which helps to enter the social world by teaching a wealth of social skills and autonomy. If the difficulties concern communication, however, the intervention of the speech therapist, for example to teach the reciprocity of language.
Second: it is not only the neurodiverse who have to approach and adapt to the neurotypical world, but also the neurotypicals who have to do the opposite movement. "Doing cultural mediation means building bridges and in this case it means raise awareness of autism and neurodiversity. In practice, it means not only explaining to the Asperger boy in middle school how to approach the behaviors of his neurotypical classmates, but also explaining to his classmates why he behaves differently. "
It is therefore a work that must be done with individuals, but also with families, with schools, with society as a whole and with respect to which figures like that of Greta Thunberg are very important. "Figures like this help to understand that we are not all the same, that each is different from the others, that no one should be forced to become something other than what they are, but he simply has to find the way that makes him feel good in his shoes ".
That said, Aspergers may have other conditions or disorders, like everyone in the population, and need specific therapies to resolve or manage them. In the book Our house is on fire, for example, Greta Thunberg's mother (opera singer Malena Ernman) mentions that she must remember to buy the melatonin for the daughter, who takes it to sleep better. "But it doesn't mean that all Aspergers have to take melatonin. They can do it if they have difficulty sleeping and melatonin helps them, just as they can take antidepressants if they're depressed and so on. However, they can. It makes no sense to think that they have to take drugs just because they are Asperger's".Read also: I, the mother of an Asperger's child, fight against discrimination every day
As we said at the beginning, for Thunberg it may be a superpower, for Tamaro it was a prison. "These are the two extremes in which the great variety of individual experiences is placed: some feel great suffering for their neurodiversity, others speak of it as a positive aspect of their being, still others initially experience it badly but learn to make up with it" says the psychologist.
Sometimes, when the diagnosis comes in adulthood, receiving it is a relief, because finally it is possible to "square the circle", to make sense of difficult situations experienced as children, to understand that the lack of friends, the 'restricted' interest or other were not manifestations of "stupidity" or inferiority but simply characteristics of the condition.
Also in this there is a great variability, also based on the personal characteristics of the individuals, their history, their beliefs and convictions with respect to Asperger's syndrome. "If you think neurodiversity is a misfortune, you think your child has been hit by a misfortune. If you think it is a different way of thinking, you receive confirmation that your child thinks, and therefore behaves, differently. which may involve difficulties, but it is not a disgrace ".
Here, according to Magoni, the role of the specialist is inserted, who should be able to explain clearly and sensitively what it means to be neurodiverse, making it clear that in this condition there are weaknesses, but also strengths.
"Of course, the daily life of parents of children with Asperger's syndrome can be very tiring, because they are the first to have to learn to know and recognize their differences, to manage unusual and unexpected behaviors, to become cultural mediators with respect to the outside world, for example the school ".Read also: How to help an asperger's brother: advice and guidance for parents
Also in the book Our house is on fire, Greta's mother tells of a disastrous situation at school, with no teacher or manager who really bothered to put Greta in the best conditions to be there in a peaceful and profitable way. Effectively school can be a sore point for many children with Asperger's syndrome. "Mind you - explains Magoni - there are situations in which things go well. Teachers are able to realize the behavioral and learning diversity of Asperger's children and to adapt accordingly, for example by adopting more visual methods of explanation, or giving more details on the duration of the activities to be carried out. In these contexts the children 'function' well and manage to have excellent school careers ".
"The biggest difficulty for teachers is realizing that Aspergers 'work' differently, as if they had a different operating system, so you have to work with them differently. The problem is that it is often all left to the individual teacher, to his sensitivity, his desire and ability to update himself and get involved. Not everyone does it and if we just propose the same things to everyone, in the same way, Asperger's children will suffer ".
Even outside of school, and as the child grows, much of his quality of life depends on the context, from family to society. "Contexts that are attentive and welcoming to neurodiversity can allow Aspergers to lead a full and satisfying life, even by marrying and having children (if they wish). Negative contexts, on the other hand, can cause a lot of suffering and lead to depression".
- asperger's syndrome
- autism spectrum
- 6-14 children years