“One day you discover that you have forty years being autistic without knowing it and, finally, you can put a name to what happens to you”. Sara Codin the first pages of Neurodivine and point (Lunwerg Publishing House, 2023), where he tells his story in the first person “to prevent more people from throwing in the towel by not being able to find those answers and, above all, to open many minds“.
In Spain, there is a case of Autism Spectrum Disorder (ASD) due to every 100 births. Autism is a neurodevelopmental condition, not a disease, but a peculiar or different way of seeing and experiencing the world. Although it is present from the early childhoodwhich is when it is usually diagnosed, and it evolves over the years, it can go unnoticed and be discovered late.
As you can imagine, the diagnosis As an adult it is an important milestone because at the same time that it alleviates the feeling of not belonging, of “strangeness”, of inadequacy and loneliness, it also means recognizing that one has suffered for so many years without knowing why. We will not know what Sara’s life would have been like if she had known earlier that she was part of the spectrumbut, as she herself says, the day of her diagnosis she no longer felt “broken or defective.”
What is autism?
“Imagine for a moment living for years with the feeling that you were born in the wrong world; in a world where it seems that there is no place for you, in which you practically always feel out of place”, Sara writes, and to explain it better, she makes a simile. “I work with a different operating system that of the majority, as if society had been created by and for the Android system and I was iOS. Android-developed apps don’t work on my system, no matter how hard I try to embed them.”
Some traits of autism
The Dr. Abigail Huertasa psychiatrist at the Gregorio Maran Hospital with experience and training in autism, and member of the Board of Directors of AEPNYA (Spanish Association of Childhood and Adolescent Psychiatry) points out that new diagnostic criteria establish that in autism, “difficulties in communication or social interaction must always be present (previously they must be both) and also interests, movements or repetitive behaviors or stereotyped”.
Sara was a quiet girl, introvert, observant, reserved, although every time she was in public she went on stage, trying to be equal to the rest, to belong to a group, to fit in, to hide what she was. she sits out of place and she got angry because while she saw that everyone was doing well in apparently easy moments like games, in the yard or at a birthday party, it was “horrible” for her.
Era extremely demanding with herself and was terrified of disappointing others. “I didn’t want to be a freak and I had this goal of being ‘normal,'” she says. “I had the feeling that everyone was born with a basic and integrated instruction manual, or with a road map that I had not been given.” Although she did not usually have tantrums like all children, when she did, she acknowledges that “they were intense, in a big way, giving everything. They also say that she had the gift of letting go inappropriate comments. In my defense I will say that if I said it it was because it was the truth, although probably without filters and at the most inappropriate time.
In this way, Sara describes the most characteristic features of people with autism, to which is added the hypersensitivity general. She herself annoysly remembers the school dining room, with all kinds of smells, the noise of children and the noise of household items and furniture. At first glance, as an adult, no one would say that Sara has these traits, but we already know that the procession goes down inside. And the spectrum is very broad. There is no single list of signals.
Girls and women camouflage the signs
Whenever we think of people with autism, we visualize children (boys), right? The psychiatrist clarifies that “autism is detected before in boys than in girls for many reasons. One is because of the image that has been transmitted in the cinema and in the media.” All we have to do is remember the series Atypical o The Good Doctor.
Without any intention of generalizing, the expert assures that, due to gender conditions, the girls do not stand out if they are calm, quiet or play alone, how do children with these characteristics attract attention, since traditionally “they are expected to be more social and play more physically”. The expert also tells us that women better mask the symptoms, which is known as social camouflage. “They notice others, watch romantic movies, and copy social responses to fit in and be accepted, albeit with great effort, wear and suffering.”
Why can it go unnoticed?
The psychotherapist Valeria Fiorenzza Perrisclinical director of Buencoco, an online psychology and psychotherapy service, maintains that “in adults, it is not easy to start a diagnostic investigation: often the features are different or less obvious, or the individual has developed masking skills that allow them to make the features less visible symptoms. In fact, it may be the case that the typical elements of the autistic condition are expressed exclusively in solitude and, therefore, are hardly visible for everyone else”.
For her part, Dr. Huertas analyzes that there are currently families who discover their diagnosis due to that of one of their children. “Receiving information from reliable sources and knowing that sometimes there is a genetic load, they look for a diagnosis and they reconstruct their biography with that look.” The psychiatrist says that in some cases, if they had been tested as children, the signals might not have been strong enough or affected their lives. Or maybe they were, but they have been attributed to another disorder.
“It is very common for autism to be confused with other neurodevelopmental disorders or learning (due to attention deficit, intellectual disability, high capacities, etc.), but also with anxiety or depression or personality disorders. It can happen that people with serious mental health problems present at some point in their life, difficulties of social interaction and communication or repetitive behaviors, which can confuse the professionals“. It’s not always about autism.
In addition, there are people with autism with developed language and good cognitive ability, which makes it difficult to arouse suspicion. “As children they have been able go unnoticed as there is no alert in their learning rhythm or attributing their peculiarities to other factors such as the environment or temperament”, affirms the doctor.
another reason for lack of diagnosis It is the little training and experience on the part of the professionals, although now, “fortunately, there are more and more; a greater offer for professionals to be trained; autism is already a Public Health service and adult psychiatrists are leaving, little by little, showing more receptiveness to listen and attend to these needs”, says the doctor.
Another piece of good news is that this is the first year in Spain that the child psychiatrist specialtywhich will improve diagnoses in children.
How can we detect it as adults?
These traits can be cara visible of autism in adults. However, they can also be from another condition or simply from a personality trait more. Therefore, although we tell you some clues here, it does not necessarily mean that you have autism. These are some seals that Sara has attributed to her condition and those that the experts have been explaining to us for our better understanding. “If you are suffering, you feel out of adjustment, you have gone through different diagnoses and you haven’t reached a clear one, you can ask your professional,” says Huertas. But remember: not everything is autism and, sometimes, it doesn’t even come close.
- Difficulties in communication or social interaction. They are, together with repetitive interests or behaviors, the nuclear criteria of autism. “From not knowing how to speak to using a robotized language, very formal or even musical. Or from not having friends, but wanting to have them, or not relate with anyone or look into their eyes, until they understand the social clues, the jokes, the nature of certain relationships, when something is appropriate or not… It is not because they are not empathetic, but because they do not know when it is convenient to do it”, says the psychiatrist.
- Interests or repetitive movements. “With mild symptoms, perhaps they are interested in singular topics and deepen a lot in them, they spend time researching and talking about a topic.” Make lists for everything, that everything is tidy by colors, to know everything about a single topic…
- Language and learning, overcome. “In general, autistic people who have not been diagnosed as children have not presented learning problems or have responded well to stimulation, speech therapy or school support, but there are other signs to check.” Regarding language, a habitual feature is also the literality and, hand in hand, the application of rules and lack of flexibility or cognitive rigidity.
- Emotional dysregulation. “Individuals with ASD have difficulty regulating their emotions, so social anxiety is often accompanied by ira. This further exposes the subject to loneliness and isolation. Among the false myths that need to be dispelled about autism is the misconception that autistic people only feel comfortable in solitude and are not interested in socializing. In reality, they often would like to create new relationships, but find it difficult to do so,” says Fiorenza Perris.
- From mild to severe. In the new diagnostic classifications, they contemplate autism in degrees of severity depending on the need for help or support: grade 1 (need help); 2 (needs noticeable help) and 3 (needs very noticeable help). People in grade 3 present minimal social communication, generally without oral language, with repetitive or restricted behaviors that greatly limit and interfere with their daily life, with very inflexible behaviorsdifficulties adapting to changes and fixing their attention on different topics.
- The invisible signs. In addition to these grades, medical guidelines include sublanic or subthreshold symptoms, with no detectable signs. “peculiar people or with a tendency to isolate, but whose behaviors and peculiarities do not interfere with their daily life or do not interfere significantly”. The expert indicates that these symptoms manifest in a limited context and perhaps many of these people are relatives of autistic people and understand themselves within what is beginning to be called the Autism Spectrum Condition (CEA) or neurodiversity, words that are not medical terminology, but are often used among professionals. and activists”.
- Intensity sensorial. Strong smells, lights and flashes, loud noises… are great enemies of people with ASD. Their threshold for all these stimuli is low, so they react to the least.
The impact of a late diagnosis
Dr. Huertas comments that “it is always better to have a late diagnosis that not have it There are people who, without a diagnosis, have achieved great achievements. This is more common in intelligent people with great family partner support, or in people with subthreshold symptoms. There are others who have suffered a lot from feeling out of step with their environment and who have developed mental illnesses or very limiting emotional symptoms, or who have not been able to access jobs or have a full life. There are those who have failed in sentimental relationships or do not have a social network; or who have suffered abuse, mistreatment or bullying”.
What professional do we have to go to?
There is a network of professionals health workers who can help you. In addition to the work of the psychiatrist, psychologist or psychotherapist, preferably trained in autism, that of the speech therapist it can be very useful. “The speech therapist can accompany you to improve communication and social skills,” says Soraya Valero, from the Professional College of Speech Therapists of the Community of Madrid (CPLCM), all of this, in the work, social and personal contexts.