Autistic adults, invisible and forgotten?

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 he does not tolerate the noise and always wears headphones that he 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, they are unable to analyze the context and adapt their behavior accordingly. They don't understand jokes, metaphors, sarcasms… "And as 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 neurotypic people with anthropological rigor and watching soap operas, so my children sometimes tell me that I overreact.” Everything to try to dodge the stigma that has dragged: to be considered a rarita or a mentally ill.

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 at brain functioning, leading to a different way of understanding and processing information. “Today the expression autism spectrum disorder is used (TORCH) to group within the same category people 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's why it sticks to strict routines and unforeseen changes 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. Notes 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: become independent of the family, have an occupation to help them to realize themselves as people, maintain friendship and relationships, if possible, feel loved and respected… – says Ricardo Canal. There are also those that derive from their condition, which are different in intensity for each person; but all even the most capable adults need to overcome the limitations in social interaction, if they want to participate in society and carry out a 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 a totally 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 finds 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 the prejudices in relation to 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. It 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 the depression and took her to the edge of suicide (“The labor inspector told me that it was the most serious case of workplace harassment she had seen in her life,” he says) and that she suffered abuse at her first marriage.

Today she is relegated to a post without attributions that was located for a long time in a noisy hallway, where she needed protective construction helmets to withstand a noise for her maddening. "The labor field is hostile .for an autistic person. As we think differently, we also understand differently and that can lead to problems with colleagues or bosses, misunderstandings, abuses … ”, 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 truth is that Most autistic people, even if they have high abilities, 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 severe intellectual disability, the majority without language and with permanent support needs, which will never have an autonomous existence. At present, 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. “Many services of special education They reach 21, but what happens next? Adult life is the longest and in which there are less 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 Snowy, 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 personal 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.

The health odyssey

In the New Horizon homes, where the oldest of his tenants is 51 years old, they already have their eyes on old age. An uncertain territory. “It is a great uncertainty. There are no studies or references”, Explains the director, Carmen Muela. And the psychologist Ricardo Canal, agrees: “Information on aging in autism is very scarce. Older people have very complex needs, because to their own limitations due to their aging, they join communication and social interaction problems. So they have a double vulnerability. ”

These adults have higher rates of mental health problems (depression, anxiety …) and physical (gastrointestinal problems, obesity, hypertension …), and may suffer increased risk of developing diabetes or heart disease. That is why Manuel Nevado is proud that after an effort of about a decade, the creation of AMITEA was achieved, which is a unique unit in Spain and internationally recognized for comprehensive medical care for people with autism spectrum disorder at the Gregorio Marañón Hospital from Madrid, where you can get the tests you need throughout your life. One more step towards dignity and inclusion.

SUSANA BATALLER, MOTHER OF MARINA DE LA FUENTE (22 YEARS OLD)

Marina likes to go to the supermarket, watch Disney movies, classical music, ride a horse and walk. But what he likes most, like many children and adolescents with autism (and without it), are the new technologies. “They are very visual, so the use of computers, tablets, mobiles, is very interesting for them. Marina can use a computer, tablet, mobile phone on the same table… If it were for her, she would spend half the day walking and the other half with the iPad and the computer, ”says Susana, her mother.

Marine was diagnosed 20 years ago of generalized developmental disorder with autistic traits, associated with maturational delay and epilepsy. He has a very high degree of dependence, he needs help to get dressed, clean himself, go outside … He doesn't speak and only when something interests him very much It is understood through signs or pictograms.

Susana works in a hospital and the rest of her time (and all of her income) is dedicated to her daughter. He takes her on horseback, music therapy, extracurricular activities They cost twice as much as any other child. He also pays a caregiver so he can escape to Pilates one afternoon a week ("The caregiver must take care of himself," he says).

At 22, Marina claims parcels of freedom. Some weekends he goes to the camps organized by the PROTGD association. “It needs independence. Have you ever taken the walking pictogram and showed it to me with one hand, while with the other I was pushing out of your room, telling me: go for a walk, ”says his mother.

As for the future, Susana has taken many turns and is clear about what she wants for her. "In other European countries there are sheltered homes where, instead of being closed and isolated (like the current residences that are specific because families have contributed significant amounts of money), they would be in open spaces actively participating in the community. If you let them, they can contribute a lot. The biggest mistake is to isolate them. ”

REGINA CORTÉS (39 YEARS OLD)

He graduated in Humanities and Communication at the University of Deusto and now studies Art History and Criminology. Is Asperger, gifted and economically independent. She lives in San Sebastián, looking at the Cantabrian, is married and is the mother of a girl also with autism. "It's not something that worries me, because I have the means to make your life full," he says. I would worry if I was in the situation in which I found myself 39 years ago. Now I know what I did not know then: that I am autistic. Luckily I have the support of my family and professionals to ask. ”

To get to know her a little better or get an idea of ​​what life is like with Asperger, beyond topics and the sweetened vision that fictional characters draw (“I like them to exist because they make the group visible – Regina says – but to I don't like them at the same time because they are not realistic. They start from an autism profile that is a minority within the minority ”), just play play in the videos from your YouTube channel, The lonely Sagutxo (the lonely little mouse). There he talks about childhood and school, routines and obsessions, social phobia, about falling in love and starting a family. “It's what everyone wants, isn't it? At the beginning of your life you see it as something that will happen sooner or later, but year after year is an increasingly distant goal because the pieces do not fit. You try to do what others do, but it doesn't work out for you. So comes resignation and depression. Life as a couple is more a contract of coexistence and loyalty than what is understood as life as a couple. I am not looking for passion, details or eternal crush, but a travel companion, someone who complements my mind. And with an autistic mind it is not easy to find it. ”

Regina says she is happy now. Although most of his life has not been. "I think an autistic person can only be when he accepts who he is and works to maintain that acceptance."

CARMEN MOLINA (57 YEARS OLD)

Carmen has lived in first person the invisibility of autistic women. That is why it is part of CEPAMA, the only committee that exists in the world formed by women with autism self-represented. From that platform they want to draw attention to the gender bias that is also lived within the spectrum. “We try to have different diagnostic tools, because in men autism is of external manifestation, they pretend worse and are very disruptive, while women do not outsource it, so they frequently stay below the speed cameras. ”

Autistic women are also very vulnerable to abuse. “In your desire to be part of a group, you pass from hand to hand and think that this is socializing. As we do not know how to read the intentions of the other in the gestures or context, it is easier to be victim of predators. It happened to me: with 20 years I fell into the hands of a batterer, who was my first husband and was about to kill me. He said he hated me because I'm insensitive to everything. That is one of the topics about autism that most offend us. They say we have no empathy, but it's not like that. The lack of empathy is different from alextimia, which is the difficulty to recognize emotions in the other, not to feel them. ”

His children have also once thrown in his face the lack of affection. “They tell me that I have cared for them like a tamagochi, that little machine that you fed and cleaned in a very functional way. I hugged him for the first time at age 19. I don't like caresses or hugs, they are painful and that's why I never touched him" Carmen does not support to be touched and does not tolerate the rubbing of zippers or seams. An involuntary rub on the bus produces the same intense stinging as anyone skinning their knees when they fall. When the discomfort and anxiety overcome it, it swings back and forth. “These behaviors tend to be considered crazy or weird, but they are a matter of health. They are a very conscious act to release stress in the face of hyperstimulation of the environment that supposes true torture. ”