Autistic adults, invisible and forgotten?

They are among us, although we don’t always see them and, above all, we don’t understand them. Adult women with autism process information differently. Many live pretending or imitating normality to avoid stigma; others suffer severe disability. Is society and administration up to your needs?

Carmen Molina greets you kindly, without kisses or handshakes. He sits on the other side of the table in an almost empty cafeteria. It’s a peaceful place. A glazed oasis. Carmen is autistic. Although many parents and some associations recommend saying “people with autism, ” she claims the term: “This is how self-represented adults refer to themselves throughout the world because it is not something alien to our personality,” he argues. If we were not autistic we would not be the people we are. ” She, like many autistic, has sensory hypersensitivity, so she does not tolerate the noise and always wears headphones that she uses as earplugs when needed.

The first thing that attracts attention is that it is talkative, expressive and has a great sense of humor. It is what he calls “the chameleon effect”, which he has been practicing all his life. People like her have difficulty reading gestures or facial expressions, are unable to analyze the context and adapt their behavior accordingly. They do not understand the jokes, the metaphors, the sarcasm… “And since society does not forgive those who do not follow the pattern, you live pretending and imitating. It’s the only thing you can do if you don’t want to face the consequences: rejection, discrimination, loneliness”. So Carmen learned to modulate a new tone of voice, disguising his own, of a natural monocorde and that is interpreted as robotic and edge. He also did his best to camouflage the brutal honesty of the autistic. “I learned by studying neurotypical people with anthropological rigor and watching soap operas, so my children sometimes tell me that I overreact.” Everything to try to avoid the stigma that has dragged: that of being considered a rarity or a mentally ill person.

Carmen is one of the 450,000 people in Spain diagnosed with autism spectrum disorder (approximately one for every 100 births). It is a disorder that affects the configuration of the nervous system and brain functioning, resulting in a different way of understanding and processing information. “Today the expression autism spectrum disorder ( ASD ) is used to group people in the same category very different from each other, but who share two basic characteristics: difficulties for social communication and repetitive and restrictive behavior”, Explains Ricardo Canal, professor at the Faculty of Education of the University of Salamanca, expert in spectrum disorders and director of the Center for Comprehensive Autism Care at the same university. The brain of a person with ASD is configured from before birth to be rigid and literal; That is why it adheres to strict routines and changes and unforeseen events generate great anxiety. That is why, above all, he is unable to understand social language. All this, within a range so wide, that goes from people with a serious intellectual disability to others like Einstein and Steve Jobs, who are said to be included among people with Asperger syndrome(those that do not affect their intellectual capacity) and also have high capacities. No two people with autism are the same or have identical needs.

ASD is not a disease and therefore cannot be cured. There is nothing to cure. This means that it is a condition that will be present throughout life, although scientific studies, attention, and support are diluted as they turn years. “When they are little, they are very cute and produce a certain tenderness, but when they grow up and sometimes their problems get worse, they are more annoying. Note that there is a greater rejection towards them. They are ignored, precisely, when they need more help, ”laments Susana, Marina’s mother, a 22-year-old girl with ASD and a very high degree of dependence. Susana avoids going around the future too much to save her anguish, but she lives her day-to-day life with the same uncertainty as all parents of children within the spectrum: “What will happen when I am gone?”

Obstacle race

Far from disappearing, once childhood is over, its difficulties increase. “On the one hand, there are the needs that everyone has: becoming independent from the family, having an occupation that helps them to realize themselves as people, maintaining friendship and relationships, if possible, feeling loved and respected … – Ricardo says Channel-. Some derive from their condition, which is different in intensity for each person; but everyone, even the most capable adults, needs to overcome the limitations in social interaction if they want to participate in society and carry out work or occupational activity ”. Today, thanks to early detection, early intervention and educational projects that enhance the development of adaptive skills in standardized environments, significant improvements are achieved in many children with ASD that are consolidated in adulthood. The expectations of a satisfactory life are much higher than 20 years agoHowever, the figures in this regard suggest that only around 15% achieve an independent life … Or almost. People within the spectrum are at the tail of labor inclusion. According to Autismo Europa figures, between 76 and 90% are not employed. Although many are very motivated, it is one of the groups that find the most barriers. “Many of them relate to the absence of specific support programs. But also, and in a very significant way, with the absence of opportunities in the business fabric and with prejudices about this type of disorder, ”conclude the authors of the study Employment and Autism Spectrum Disorder. A potential to discover.

Carmen Molina is in the small percentage remaining. He was able to devote himself to his vocation for cultural management and work in a museum. She became deputy director of the Railway Museum. He got a good salary and a nice house has been married twice and has two children. She could be considered a successful woman, but face B of those successes is that she had a terrible time at work, which plunged her into depression and led her to the brink of suicide (“The labor inspector told me it was the most serious case of workplace harassment that he had seen in his life ”, he says) and that he suffered abuse in his first marriage.

Today she is relegated to a post without attributions that were located for a long time in a noisy hallway, where she needed protective work helmets to withstand a noise for her maddening. “ The labor field is hostile .to an autistic person. As we think differently, we also understand differently and that can lead to problems with classmates or bosses, misunderstandings, abuse … ”, says Regina Cortés, who graduated in Humanities and Communication in Deusto and worked for a few years before becoming a mother. Success stories such as film director Tim Burton or Satoshi Tajiri, the creator of Pokemon, are the exception. “The reality is that most autistic people, even if they have high capacities, will not succeed even a happy life,” concludes Carmen Molina.

Grow … and grow old

At the opposite end of the spectrum that Carmen and Regina occupy, there are people with serious intellectual disabilities, most of them without language and with permanent support needs, who will never have an autonomous existence. Currently, there are not many adequate services to meet the needs of older people with autism. “There are some models that are based on the idea of ​​creating a quiet and safe environment, as if it were an extension of the family, without having an institutional aspect, with planned activities, promoting an active and healthy lifestyle, and taking care of health ”, Says the psychologist at the University of Salamanca. The majority have been born from the associative ecosystem driven by families. “Much special education services they reach 21, but what happens next? Adult life is the longest and in which there are fewer supports and resources. ” The question is launched by Carmen Muela, director of the Nuevo Horizonte Association (in Las Rozas, Madrid), founded by a group of fathers and mothers in the late 70s. 44 people live there. All have high affectation ASD and require 24-hour attention.

Nuevo Horizonte is a pioneer in the attention of severe autism. It started as an educational center for children, but now in its facilities, all aspects of life are addressed in a multidisciplinary way: education, work, leisure, community, physical exercise … And there are homes, which are six independent floors where they live together in small groups under the permanent supervision of qualified personnel.

“This is designed so that, when they are very old, they are still here, to be their home until the end of their days. In short, to respond to the parents’ concern about what will be theirs. ” Who speaks is Manuel Nevado, president of the association and also of the Autism Federation Madrid. His son Luis lives in one of these homes and he, since he retired, is dedicated to the fight for the quality of life of people with this disorder.

A home, a life, a neighborhood

On the sunny porch of a chalet on the other side of Madrid, there is a blue chair. There Carlos likes to sit and watch the comings and goings of the neighborhood people and the airport planes. Carlos lives in one of the few sheltered homes that exist in Spain, promoted by the PAUTA association and with places arranged with the Community of Madrid. One afternoon in September, its six inhabitants (Xhulia, Alberto, Carlos, Miguel, Dani, and José Luis) arrive at this vest, after their day at the Day Center.

Touch rest. Carlos sits in his chair if it is good; if not, go down to the basement where you have another favorite corner to listen to music and isolate yourself if there is much fuss. Alberto runs to a small sandpit in the backyard, which is his oasis, Miguel climbs into his room, lies down for a while in bed and at six o’clock (obsessively consults his watch) he will play the keyboard for a while. Then, before dinner all together, they spend some time at home, although the real cleaning jars (put washing machines, vacuuming, tidying up …) do it every weekend, like any family. “They also go out for a walk in the neighborhood, to buy, to work in an urban garden with other neighbors … Some have hourly jobs. Here they lead a life as similar to anyone’s, normalized ”, explains Laura Sacristán, head of Housing of the PAUTA Association and Marina’s mother, a girl with autism who has not yet become independent.