Breathe
By Luz Romano
Does your child have autism? Don't tell me, I'm sure he's very intelligent. They say they're geniuses, great at math. Your child has autism? Many celebrities have autism, don't they, and they do incredible things? Why don't you take him to speech therapy? There he will surely learn to speak. Give him a lot of effort, you will see that he will succeed, because these kids are very bright.
Emilio, my 17-year-old teenage son, was diagnosed with autism when he was three and we lived in England. At the time, we still thought his condition might not be so severe, but over time we confirmed that his autism is nonverbal and severe in magnitude. For years now, as a family we have heard so many times comments - let's say well-intentioned - that echo the false perception that people with autism are something like quirky people and misunderstood geniuses who don't quite fit into society, but who are functional and at heart endearing, and not people with disabilities who, in many cases, require ongoing support. To us, such comments are hardly less hurtful than the equally recurrent "god knows why he does things" comments.
Fortunately, autism is more talked about today than it was 10 years ago. Some of us are fans of television series that introduce us to characters like Sheldon Cooper, a physics genius incapable of social interaction. Others of us know the story of Temple Grandin, who despite having been diagnosed with autism managed to complete a doctorate and is an advocate for people with this condition. In networks, the case of Stephen Wiltshire, a young man capable of drawing in detail every building and city street he has just flown over, recently went viral. There are more and more stories of those to whom doctors gave no hope and today they integrate naturally into the world, study, work and have friends.
According to this fashion, autism has even become "cool", so much so that some media dare to suggest that this or that character is autistic at heart, for example, Lionel Messi.
It would seem that this disorder is not so serious. Sadly, the reality is different. That romanticized view does not reflect the reality of tens of thousands of people living with severe nonverbal autism. My son Emilio is not a genius like Sheldon Cooper. He has never said a single word and that is the least of his problems. Emilio has no friends, doesn't go to a "regular" school like any other boy his age, self-harms when he is stressed or in physical pain, doesn't understand contexts, much less dangers. If I leave him alone on a park bench, he will simply get up and walk away. My son does not express surprise or pain (not because he doesn't feel it) and has limited interests. My intuition is that in Mexico there are more Emilios than Temple Grandin.
I am writing this text from the hospital where Emilio has been hospitalized for 18 days. He suffered from an intestinal ailment and appendicitis. Another boy of his age would have recovered more quickly. He would be in his room eating ice cream and watching television. Because of his condition, which prevents him from remaining cooperative and still, Emilio was sedated and intubated for several days. When he woke up, he had to be restrained to the bed. Fortunately, he learned to swallow his pills, but there is no way to give him suspended medication.
Although the doctors have been up to the task, no one really knows how to take care of a kid who doesn't appear in tiktok videos, a young man who tries to get out of bed and leave even with the effects of anesthesia, who staggers from one place to another and tries to escape again and again.
These days my husband and I have had to stay in intensive care without rest, being nurses, medical assistants, therapists and constant caregivers of our son who is 1.82 centimeters. Even we, his parents, don't know for sure how he will react once all this is over and seeing him in this situation is very painful. Whatever you write is an understatement.
Each person with autism is different, Emilio does not belong to that group of those who manage to integrate despite their autism, of those who in the eyes of others are willing; he is almost of age and our concern is not whether he will be able to vote, but that he needs support to bathe, go to the bathroom, get dressed, wash his hands or teeth; in any carelessness he eats soap, shampoo, bites wires and any other strange thing that comes his way. Emilio is a being of love, his look and his smile could bewitch anyone, he is handsome, he is affectionate, strong and very tender; I wish his autism did not define him, I wish no one would label him, but for that to happen, there should first be an understanding that in Autism Spectrum Disorder there are many possibilities.
ASD is a condition that affects communication and social interaction, and flexibility of behavior and thinking. People with ASD have restrictive or repetitive behaviors or interests. And this condition ranges from grade 1, or high-functioning autism, to grade 3 where people need constant support.
The world around Emilio has been the real challenge, because again, romanticism and ignorance make educational and medical inclusion or the recognition of his disability barriers to overcome every day. Trying to go to school and being rejected over and over again, not being able to go to the movies, the theater or an amusement park, a hotel on the beach? Not a chance.
In terms of health and recognition of their disability, the State is not an ally; an example is that in the DIF to get a disability credential (which is useless) you must take the child to the Ministry of Health to obtain a letter of diagnosis and also to the DIF to be measured, weighed and explain two, three, four, five times in the same morning that he/she does not speak, read or write when it is more than evident, go to at least three check-ups after long waits and the questions are always the same. Finally you get the credential and it turns out that it is valid for 5 years (lest he gets cured); and then when he turns 18 you must take him to the IMSS to be diagnosed again (the DIF credential is not valid) and he can continue to be a beneficiary.
Even though educational inclusion is a right, finding an elementary school was a real challenge. The only year that Emilio attended a public school (fourth grade), he ended up in a corner with his therapeutic companion (paid by his parents, not by the State), ignored by his teacher; the worst was when parents complained that Emilio made noise and distracted their neurotypical children.
I have too many examples like this because society does not know, or does not want to see, this very complicated part of autism. I have lost count of the number of times I have been asked: "Haven't you taken him to speech therapy, don't you teach him to eat with a spoon, why don't you have him draw, why does he scream out of nowhere? I patiently explain that we frequently visit the neurologist, we are in constant therapies, he has a therapeutic monitor and attends a center specialized in autism. Every time I make it clear that with my son it hasn't been enough to give him a good night's sleep, I get the feeling that "I haven't done enough" and that is very painful for parents who haven't known what it's like to get a full night's sleep for 17 years. We are a middle class family who work and strive for the welfare of our children, but we are a minority, most of the patients with autism do not have the possibility of paying for a therapeutic companion or a specialized institution.
Let us see autism for what it is: a disability that in some cases can be handled with some level of "normality" but in many others it is a severe condition that affects the day-to-day life of those who suffer from it to unsuspected degrees. Our children with autism become adults and continue to live with autism and, what do you think, trying hard is not enough. We need them to be recognized, understood and supported, because they are also part of our society. They are ours and no, they are not geniuses.
*Luz is the mother of Emilio, Pablo and Daniel. She is also director of communications at Mexicanos Primero.
The opinions expressed are the responsibility of the authors and are absolutely independent of the position and editorial line of the company. Opinion 51.
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