A mother from TEAdir-Euskadi
The symptoms are the first sign of alarm.
The nervous tic, the strange way of slurring words, the formal speech that is almost academic and pedantic, the solitary and extravagant game in the park …
Symptoms strike fear into our heart and alert us. And when we go to the doctor’s surgery they are what we refer: he plays alone, speaks to strange characters, moves his head constantly, freezes, seems not to hear, is immersed in his own world, slurs his words as if stuttering, his conversation is excessively formal …
At school, his teacher also speaks of these symptoms: he does not get along with the rest of his class, goes his own way, does not seem to pay attention, becomes agitated when there is a lot of noise, doesn’t stop painting in the margins of his books or making little paper balls with his notebooks …
And at the park, the symptoms single him out: that boy is “weird”, “extravagant”, “different” …
Would it that the symptoms disappeared. Would it that he behaved like all the others. Because without those damn symptoms, my son would be like all the others. Without symptoms, there would not be a “problem”.
And then we ask ourselves: maybe if we force him to keep his head still, maybe if we sign him up for the football team, maybe if we take away the game console so he is “obliged” to play in the park, maybe if we reprimand him constantly for drawing in the margins of the book so he stops doing it, maybe if all those symptoms disappear … maybe …
But in the day-to-day, we soon appreciate that fighting these manifestations is remaining on the surface, in the ostensible and that our son rapidly substitutes one repressed symptom for another to fulfill its function.
At our home this was very evident: we repressed his “fixation” with painting in the margins of books during classes because he seemed not to pay attention. And he substituted this “fixation” with that of making little paper balls with pages from his notebooks.
And this made us understand him.
His drawings were his support, his refuge, his anchor.
Focusing on his symptom (his apparent disconnection in class), had made us forget what was important: he was already attentive even if it was not apparent and he had found a less aggressive or invasive resource to do so. And we began to learn to trust in him, in his logic, in his way of presenting himself in the world and to the world.
It is still a great mystery why in certain circumstances our son freezes. But accepting his logic does not necessarily mean understanding it. It means giving valuing and acknowledging that it is his and that he will builds upon it. And that it is for us to adapt to it.
Autists are people that we must listen to and who what is more, have a difficulty in expressing what they want to tell us.
The problem is that we come to think this difficulty in communicating represents an absence of things to say and with the “authority” of “what is normal”, we stop listening to them firstly because they are minors, secondly because they seem to have nothing to say and thirdly because their positioning (that which they have to say) “is wrong and must be corrected”.
Nevertheless, we especially need to listen to them because we cannot resort to our own experience to understand them, nor to what is commonly admitted by everyone else.
As the years go by, I believe the key to our son’s evolution has been his curiosity. And through it he has spoken and we have been obliged to listen to it.
His curiosity about volcanoes made him lose his fear of flying, because to see the Teide he had to take a plane.
His curiosity about comics made him understand Mortadelo and Filemón (a popular Spanish comic series) and from then on to establish a closer relationship with irony, which helped him to not feel constantly aggressed by his surroundings and to perceive them as less burdensome.
His curiosity about cartoons made him discover a world with which to express his feelings, desires and worries. We learned to understand that what he told us about these characters was his way of talking to us about his interests.
His curiosity about his classmates’ excitement with football made him take the step of presenting himself at the league final with his classmates. It was not football that interested him but bonding with his classmates.
His curiosity about Harry Potter made him meet a substantial group of fans of the saga and led him to other interests and groups.
With time, I notice that he has always been ahead of us. That our job has been to pay attention to what he demanded. But we had to respect his interests, which were not ours, nor that of the people around him and could not be forced. They were his doors to the world.
Because he would only say it once: I want a comic book, I want to see the Teide, I want to go to football, I want WiFi, I want a smartphone, I want to go to Valencia to meet with a group of people I met on the Web. Yes … he would only say it once. His father and I were in charge of valuing that request, of not letting it pass, seizing it, understanding its possible function, of helping him open that door, of losing our fear of the unknown (it is not easy to just go to Valencia …), of renouncing to control everything. And above all … of trusting him.
When our sons and daughters (particularly those with ASD) are young, it is sometimes difficult to distinguish between what is training and what is education.
That is why with boys and girls like our son, it is as they grow older that we appreciate better if what we have been offering them are only tricks to avoid some of the symptoms and adapt to a hostile environment or if we have also provided a more solid base as much autonomy as possible to interpret life and take decisions.
In the case of our sons and daughters with ASD, our experience tells us that it is fundamental to listen to them, give them our trust, believe and respect them. That we cannot force them to follow the standard way because they are not standard children and because their ways are different.
Our son will soon be 20 years old. He still lives in another galaxy, in a parallel world, but he is likable, ingenious, fun, loving, brave, stable and seems happy.
And, what happened to the symptoms?
The truth is I couldn’t say. Some disappeared gently. I cannot remember when the stopped being present. Other are still there but the truth is we do not pay them much heed because we have discovered the person behind them.
Translation: Soledad Székely Schlaepfer