What no one will tell you about autism
Marisa Angulo Riedner
ABOUT THE AUTHOR
Marisa Angulo Riedner, born in Lima, Peru in 1968, is happily married and has two sons and a daughter. She has a bachelor’s degree in early childhood education, Postgraduate studies in Special Educational Needs (SEN), Inclusion and Autism Spectrum, Postgraduate Studies in Sensory Integration, Postgraduate Studies in Dyslexia and Learning and a Master’s Degree in Psychopedagogy. She splits her time between in-school accompaniment for children with SEN, the development of curricular adaptations and therapies, and her great passion for writing. She is the author of the Blog "Lo que nadie te dirá ..." (“What no one will tell you”) in which she provides easy-to-read articles to guide parents and teachers on strategies for children with learning difficulties. "What no one will tell you about autism" is inspired by the author's experience, both as a mother of a child on the autism spectrum, as well as in her work as a specialist in special educational needs, in which she has worked for the last 12 years with more than 140 children individually, helping them to understand the world, to know how to navigate and live in it, reaffirming their self-esteem, recognizing that they are neither better nor worse than anyone else, just different!
SOME WORDS FROM THE AUTHOR
When we plant a sapling and it’s still tiny and frail, we often find ourselves needing to prop it up so that it can grow in the right direction. Our children on the autism spectrum (ASD) develop unlike regular children, however, and if we try to guide them in the conventional ways we know—the way we think we should direct them—we won’t get the results we’re looking for, nor the results they need. They are not like that sapling, which can be held up to make it grow into a straight tree; we cannot direct them as we please. What they need is that we guide them through paths that in most cases seem long and winding, but through which we will help them become autonomous and happy adults, integrated into a world that's confusing for them. In general, parenting can be complicated since there's no manual to guide you, and this is even more so the case with autistic children. They need us to help them understand the world; to know how to read, navigate and live in it—reaffirming their self-esteem and recognizing that they are no better or worse than anyone else, just different!
SHARING MY STORY
My autistic son is a gift from heaven
It seems incredible that receiving such a diagnosis could be considered a gift. "How could it be? Are you crazy?" "This was not in my plans,” many people will say. I knew that it happened to others and even worse so to some, but it was not supposed to happen to us! I felt the very earth was crumbling beneath us and that all my dreams, my expectations, my projects had simply been pushed aside. I felt that from one moment to the next I was living a reality that was not mine!
The truth is that it happened to you, as it happened to us, as like it’s probably the case for you, it certainly wasn’t part of the plan either. I knew that my son was different—I've known it since he was very little—but I didn't know just how different he was! He was my third child, so I had two others to compare him to, but in our supposedly open-minded way of thinking, we accepted that every child is different, with different tastes, interests and ways of being, but we don't stop to think what it really means to be different. I wasn't aware of how far these differences could go. You always convince yourself of what you want to see and find explanations for everything. Years later, watching childhood videos of him, we realized that the same situation kept occurring: He was called by his name several times but he never paid attention or looked at us in the eyes, and I, at the time filming this, would comment: "Surely he is sleepy or does not feel like it right now." Always an excuse, but with the knowledge I have today, I can watch those videos and clearly notice these telltale characteristics from a very young age.
With him, everything was different from even before he was conceived. We had two children and I wanted to have the third right away, but my husband didn't. I insisted for 6 years and we always ended up in the same situation. Every time someone gave birth, I would get depressed, and I knew deep in my heart that I would have one more child. However, to me, having a child is a decision for the both of us to make, and if he didn't want one, I was in trouble, so I decided that I would do like when something in a store isn't quite working: I would look for the manager! I started asking God to help me change his way of thinking, because I had all the love in the world to give to another child. After two weeks of asking, one night I was in bed reading and my husband called me through the window. "Mari, come outside and see something!" to which I answered to myself "Oh, what a pain, I'm already warm in bed, what does he want?" So I got up and went to see what was so important. I walked to the garden that bordered our children's rooms and he asked me "What do you think about building a bedroom here?" to which I sincerely answered that I didn't see the need. "I was thinking that it would be nice to have another child, but they would be so far apart in age from each other that each one would need their own space," he replied. I froze in place as the hairs on my arms stood up. I couldn't believe what he was telling me. I recounted to him that I had sent my "emissary" to change his mind, and apparently it worked, as within a month we were expecting the arrival of a baby. It was funny; it seems that inspiration flooded our house: Our little dog had puppies, our peach tree was brimming with fruit, our fish had laid eggs, and even some pigeons had nested in our shed.
It seems like in heaven they said "You want a child? Well, there goes the whole package!" Everything about this pregnancy was different; everything I had come to expect was turned on its head. My previous pregnancies had been wonderful—I even drove until a few days before giving birth—but, well, this one was full of infections, kidney stones, and finally, at 6 months, I went into labor, which they artificially delayed for weeks, keeping me in bed until it was safe to give birth. During my previous pregnancies, a month after giving birth I was back at my normal weight again. This time around, 20 additional kilos accompanied me for a whole year, and so, everything I had come to expect was wrong—with this pregnancy I was blindsided every step of the way.
When he was a baby, although he was the most cheerful and joyous child I have ever known, on the other hand, when he cried there was no one in heaven or earth that could stop him. Following the same techniques we had learned when raising our older children, if it were their bedtime, they had already eaten and everything was in order, we would let them cry and within ten minutes they were asleep. With him, however, this simply never happened. Once he cried for an hour and a half by the clock and didn't stop until I picked him up in my arms. He needed to feel the touch and be caressed to be calm. During his first two weeks he couldn't stand the light, so we had to keep him in a dark room.
During his first year, he was a relatively easy child to manage; very giggly and he went along with me everywhere I went, but when he started going to kindergarten at the age of two, that's when the difficulties really started. He began talking and expressing himself with words after the age of two. It's not that there hadn't been some demanding situations before, but you adjust and make up excuses for it. At two years of age, however, there was no way to control him—the tantrums were intense and frequent and what had worked with his siblings did not work with him. He had certain behaviors that were quite peculiar for a child of that age. He showed no interest in paying attention or listening to anyone. He complained daily of leg pain and wanted to be carried. Among his peculiarities, he could not go up to the second floor of the house without first passing through the guest bathroom, closing the toilet lid and shutting the door. If his siblings had left items lying on the stairs, he would bring them up and leave them on their beds. "What luck, he turned out neat and tidy," they would say to me, but more than neat and tidy, he was obsessive, and that's too young to be so obsessive! When he wanted to tell me something, he would say, "Mommy!" and I had to answer "What?" for the conversation to continue. “Nothing’s the matter with him,” people would say—even suggesting that I was exaggerating—but if I answered "Tell me!" or "Yes?" or in any way other than “What?" he would burst into screams and would not stop until he was told "What?" Then his screams would stop dead in their tracks, and he would say what he wanted to say. Now I'm able to put it into words, but at the time we couldn't figure out why he was having sudden tantrums if nothing had apparently happened to provoke them. The tantrums could erupt at any moment, and we had no clue what had caused them. It was really exhausting, and it wore us down heavily.
Every day when he woke up, he would say he was a baby animal. For example, a baby giraffe, and he would look at me and say, "Hi giraffe mom!" which meant that for that day and until the next morning I would have to be a giraffe too. We would give each other giraffe hugs; we would have to eat like a giraffe. Everything that day had to be done in giraffe mode, down to the last detail. I went through every animal you can think of, I even got to be mama platypus! And him, of course, the baby platypus. Eating like a penguin here and bathing like an elephant there. It really was all very overwhelming, and if I ever failed to play along, it was sudden cries and outbursts.
There were times when we would go to the supermarket and he would happily walk in, but then suddenly he would throw himself down on the floor screaming, pull up his shirt and rub his tummy against the tiles. Of course there was always some impertinent lady who would jump in, give her opinion on whether I was raising my son right and loudly offer her unrequested two cents. They had no idea what we went through on a day-to-day basis. Mealtimes were no simpler; if there was a broccoli on his plate, it would eventually be flung towards somewhere in the dining room, and on the other hand, he would want to eat every portion of meat or chicken in the pot. The repertoire of foods he would accept was very limited—a lot of dairies, a lot of flours and meats. And don't even get me started on trying to get him to eat peaches because chewing just wasn't his thing; it would spill all over him, so we opted to give him his fruit chopped up. Without even realizing it we avoided his problems instead of dealing with them head on.
In his world, he was the only important thing, and the rest of us were but a necessary evil; slaves who had to be ready to satisfy his every need on the spot. The boy was extremely demanding, and utterly unable—though at the time it felt like he was just unwilling—to listen to me and understand what I told him. When he was given a simple direction, he would say, "Okay" with a big smile and go off to do something else. He was a very disobedient and defiant child, but at the same time giggly and upbeat.
Preschool was a very difficult time. Once I arrived to pick him up and heard the poor teacher screaming his name; a mixture of frustration and exhaustion on her voice, which was in a sense comforting—made me feel that I was not the only one who experienced it. Surely, some other mom would have found it all an unpleasant ordeal, but to me it was relatable. I could see myself in her.
We decided to have him evaluated by specialists because there was "something peculiar" about him. For him, rules didn’t exist, and he didn’t understand authority or hierarchies. When faced with a rule, he would simply burst into a tantrum.
The first psychologist who evaluated him told us that he was a highly intelligent and charming child and that he was manipulating us—which was true to a degree, but I knew there was more than that going on. She told us that we were the ones in the wrong; that we didn't know how to educate our child and that we needed to go to therapy. That's what we did but we couldn't get past the second session. We knew what we were doing with our child. After all, our first two children, at that time eleven and thirteen years old, with all their personal differences were still both well behaved kids. It wasn't us who didn't know how to educate a child. In fact, he always was, and still is, very intelligent and charming. His natural charm wind everyone over without fail—a formidable tool that is sure to open doors for him, but one needs more than that to survive in the world.
At that moment he had just entered kindergarten and his teacher, an excellent and committed tutor, told us right away that our son had a problem. She did not know what it was, but she was sure that something was not working as it should, and together we began the great search that led us through almost eighteen different specialists until we knew what was going on. In just one week we had five different diagnoses, and from the beginning they wanted to medicate him. I didn't know which of the diagnoses to cry about! They were all terrifying, but at that moment, more than about a diagnosis, I was terrified of not knowing what was wrong with him, and if there would ever be a clear path to follow. I felt that no one besides his teacher could understand what I was going through.
After receiving so many different diagnoses we finally encountered one that fit his characteristics, and that was sensory processing disorder. We had never heard of it, but after some research we discovered a whole new world, which we will discuss in more detail later. We felt reassured, believing that we had finally cracked it and that with therapy everything would be solved.
I had heard about a Korean doctor who lived in Costa Rica, who helped and cured children with difficulties with a treatment of diets and acupuncture, and in my naivety and desire to "fix it quickly" we decided to take him there. In fact it was very beneficial, as I learned a lot about nutrition and indeed it was one of the many steps that helped him to move forward and me to learn about what his body needed. We can't expect these kids to get “fixed” easily, however, and in great part because they just aren't broken. We must understand that all they need are unconventional pathways to lead full lives. It's a bit like when we plant a tree and while it’s still small, we decide to prop it up with a stick so that it can be directed to grow straight. If these children were those little trees, there would be no way to prop them in the direction we consider "right" simply by demanding it. Instead, what they need is for us to guide them along different paths, many times longer and winding, but ones that will help them reach the goal, integrated in a world that to them is very confusing.
When we returned home, he was still a difficult child. He improved when we took him off dairy on this doctor's orders. We learned that for him it acted like a drug. He had to go through a withdrawal process in which he spent two weeks with all his characteristics sharpened to eleven. He was also extremely hyperactive until he was properly detoxed, point in which he became calmer and less aggressive. I learned that casein is the protein in milk, and that it’s generally difficult to digest and leads to a series of gastric imbalances, which I will discuss in detail later.
The months of this decisive and difficult year went by, because not only were we living a complicated situation at home on a daily basis, but for the rest—extended family and friends—we were exaggerating (mainly me), because he was a very nice boy who according to them had nothing wrong with him and that he would eventually just mature out of any quirk. Even his pediatrician told me to leave him alone, that nothing was up with him. They pictured him as a well-adjusted boy, but that was because they saw him during his free time and for short periods, when there were no rules, and we were careful not to trigger tantrums. They didn't see him interacting with his peers, having to deal with boundaries, getting up in the mornings and demanding that we be a pack of leopards, or having to always do things just the way he wanted to. His teachers, too, were very clear on the fact that he was a different child; a child they did not know how to educate and who made their day difficult indeed.
In the classroom, his teacher did not know how to handle him. He would stand up in the middle of the class while the teacher was giving her lecture and he would start licking the glass, or maybe he would go to the back of the classroom and start playing with whatever he felt like playing with at that moment. He would always wander around smiling, because yes, from the day he was born until today, he is smiling and happy all day long. Everything is fun and jokes for him. The only subject that interested him at that time were animals, which although it was an obsessive interest, it became a great ally to get his attention; if there were animals involved everything was easier. Like the artist he is, he would crawl under the teacher's desk and paint all over it. Since they didn't know what to do with him, they would let him, but when the teacher asked the class questions about what they had been revising, he would pop his little head out from under the desk and answer correctly.
Once I invited home a group of mothers with their children to play in the garden. Everything was going great until it started to rain so we decided to come inside. That's when all the kids, about 5 of them, went into my son's playroom and as expected, started grabbing his toys and moving them around, making noise and disturbing everything as kids usually do. Suddenly, he got undressed, got his pajamas and in between sobs said that he had to go to bed and that everyone should leave. As you can imagine, it was an awkward situation in which the moms quickly got their children and left. He was very upset, and it was not easy to calm him down.
At that time I still didn't understand what had triggered the situation and why it had happened, but I realized more and more that he was different. So different, in fact, that I remember considering writing down his peculiarities, like the time when I entered his room and saw that he had cut a hole in the comforter with his scissors at the level of his feet. He had made "a little window" and of course the stuffing was all over the room. I took a deep breath, thought about my new pedagogical knowledge, and calmly asked him why he had done what he had done, and he replied, not a hint of shame on his face, that at night his feet were hot and that this way he would have better ventilation.
I forgot to mention one detail. When I had my older children, I discovered that my favorite thing to do in life was to raise kids and that I could spend the entire day playing with them and teaching them things. The year my third child was born, I decided to follow my dream of going to college to study Early Childhood Education. During his naps I would study, sometimes pulling all-nighters because he afforded me no time during the day. Just at that time, which turned out to be our breakthrough year, I took a special education course and I saw my son reflected in every other disorder we reviewed; every day I was more shocked and frightened. A school psychologist presented the notion to me that my son might have Asperger's syndrome, and when I did my research on it, it fit perfectly! I remember telling my husband, full of anguish, "What do we do now?" and him calmly replying, "We deal with it together as best we can!" This answer shocked me, but it made me realize that even though this possibility had never even crossed our minds and I would never have believed that something so extreme could happen to us, at that moment we had no choice but to face it as best we could.
The end of the year came, and by that time I was already working as a teacher at the very school where my kids all studied. I attended a talk given to the teachers as part of our training. It was a lecture by a great psychologist, who, to my utter surprise, was to discuss Asperger's syndrome, and again to my astonishment, my son matched perfectly, so I decided to look her up and ask her to evaluate my son so she could suggest whether he should retake the school year or not. I kept on being so naïve. For the second time here, I was looking for the quick and easy way out that would bring back peace to my daily life, because I was truly going insane by that point. This psychologist was not just another specialist—she understood the subject unlike anyone. She inspired great confidence, and so, we would continue working with her for years to come. For so long that we became very good friends and today, many years later, we work some cases together and never miss the chance to go for a coffee on the weekends.
It was the last week of classes in 2008. She evaluated my son for three days and gave us the diagnosis: He was on the Autism Spectrum, with Asperger's syndrome. Later he was evaluated by a neurologist who confirmed the diagnosis.
At that time these disorders were all called Pervasive Developmental Disorder (PDD). We felt like the earth itself was falling apart at our feet, but at the same time we were immensely relieved to know that we finally had a path to follow. She suggested that we should switch him to a smaller school, where they knew how to work with children with these issues, so without a second thought we enrolled him at a particularly good school for children with learning disabilities. I don't know whether it was our intuition, the confidence that she inspired, or whether The Great Gazoo himself was whispering in our ears, saying "She's the one! Listen to her!" but while we had ignored the previous seventeen experts, for some reason we did what she told us, feeling it to be the right thing for our son. Luckily, we were not wrong; our intuition guided us well!
The interview at this new school was a frustrating experience. My husband couldn't get a single word in during the entire meeting with the principal. It was so frustrating to see and feel our hopes, our expectations and our dreams dashed so easily. Now we had to move our son from his great school, the same one his siblings went to, to one where there were many children with difficulties, a situation that was never within our expectations; it was like relegating him to the basement! But nevertheless, if it was best for him, that's where we would enroll him. So, I took him a few times to be evaluated. I remember driving around crying for at least four or five months. When I didn't get depressed, my husband did; we were encouraging each other in turns, it seemed, because no one else could. The rest, those who did not live what we did, were not able to understand—to imagine even a little bit what we felt. Even though we were family, they could not put themselves in our shoes. Only our eleven- and thirteen-year-old children could understand us, and of course his teacher, who was always supportive.
Two months passed since our meeting with the principal. It was February and classes were to start in March. However, they were yet to let us know whether he had been admitted or not. The anxiety was immense and when they finally called us to give us an answer, my husband was away for work, so I had to attend alone. The answer was that his difficulties communicating were such that he had to go to a special education school. Can you imagine? If the basement wasn't bad enough, he was now being sent to a “coal mine” miles underground. "But how could he have communication problems, if he spoke very well?" I was again letting my ignorance take the wheel. It was later that I learned what it really means to communicate, and we will definitely go deeper into that further down the line because I have encountered this faulty logic many times among other parents whom I have gone on to help over the years.
I returned home, shedding tears and snot as I went, where my older children comforted me, always so supportive. They grew up knowing that people are sometimes different, but that they can be great people nonetheless. They have learned to deal with different people, to control themselves, to be tolerant, to know that their mom can fall apart and that it is just a part of life. However, it wasn't easy for them either because the sheer time investment demanded by their little brother didn't leave much time for them to get the attention they deserved. So you may again say "So, you're crazy if you still think that a child with autism is a gift from heaven." Well, you see, there's still more to the story.
Moving on, they suggested a special education school to me; one that I would've never even considered for my son. If the previous one had caused a knot to form in our hearts, well this one shook it to pieces.
We made an appointment with the principal and after two hours of conversation, we discovered how professional and profoundly human this school was—so different from what we were used to that we struggled to believe it was even real. We were sure that it was the perfect place for him, even though it was not the school of our dreams. Pleasing everyone is impossible, so there were those who criticized us for deciding to switch him to that school, maybe because its infrastructure was not as impressive as others, but it was the best decision we made, and I would make it again in a heartbeat. The whole team at Santa Magdalena Sofía Barat was just wonderful. Thanks to their excellent work, their commitment and their great affection and dedication, my son was able to return to his same regular education school only two years later. I met incredible moms that I could’ve never met in regular schools; moms who were willing to do everything to help their children succeed; moms who valued even the tiniest details; moms who helped me know that I was not alone and with whom I could share my experiences. I learned that the children who are said to have "learning disabilities" do not have a disability because they cannot learn, but rather because they learn differently; different from how schools normally teach—at other rhythms and through other routes—and different from how society has decided teaching should be done; within a system that has no room for those who function differently and yet have much to contribute to the world. So the problem is not only in them, but also in the education system. That means that it's not only up to their teachers to ensure that they learn, but mainly up to their parents. At that time, I was told that for the time being we should suspend learning English because he should first be able to communicate in his native language (Spanish), and that's what we did for the first year.
During his second year at Santa Magdalena, we hired an in-home English tutor, but she really struggled to get through to him, which frustrated her greatly. I would tell her not to worry because he had his own pace and that he needed lots of pictures, as by that time I knew that his mind worked in pictures. Sometime before, one of the many specialists who evaluated him had told us that he would never be able to speak English. I was certain that he would learn English though, since when we played games, I would speak to him in English and he very blatantly understood everything, so this was further indication that if I did not teach him myself, he would not make progress as I wanted him to.
During this time, he attended emotional and pragmatic therapy, as well as sensory integration therapy, painting classes and taekwondo lessons. We hurried every day from therapy to therapy, from class to class. On Saturdays, his dad took him; he started coming home from work earlier every day so that he could run him through his exercises, such as wheelbarrows, mock wrestling, etc. I spent my afternoons, like all mothers, picking up and dropping off children, making time for myself during his therapy sessions; moments that I took advantage of to further my studies.
When I finished my degree, as you can imagine, I was very excited to continue teaching, but that very year my son was set to begin at his new school, and he would need me to be calm; to accompany him throughout this new path of learning without undue haste, so I decided to stop working for the time being and dedicate all of my time to him. I would drop him off at school and spend all the time he was away reading everything I could about his condition on the internet and on every book, I had ever been suggested. I got into contact with mothers from all over the world who were going through similar situations, accumulating as much knowledge and experience as I could and putting everything into practice as I deepened my understanding of sensory integration, pragmatic communication, and everything there was to be known about what my son was going through. Throughout that year, I read about 120 books. I was obsessed, and as a passionate person, I could not stop. I realized that my only ally was the special education school, but I also knew that it was not an option for him to stay there for his entire schooling, as the school only offered up to elementary education. It became clear to me that I had to learn how to help him myself, otherwise he would remain stagnant and fail to succeed the way I wanted him to, and most importantly, the way I wholeheartedly knew he could. I was lucky to have the support of my husband the whole way through. Every crazy idea I came up with, there he was, ready to provide the unconditional support I required, even when I altered our eating habits, our environment and our very way of living. His support—and that of my children—gave me the strength and confidence I needed to keep moving forward. I also counted with the support of a psychologist and a psychiatrist, as I alone couldn't pull off such a task, even with the ever-present support of my family. Only together were we able to achieve what we have. Today my son, now sixteen, is a boy who doesn't give even the slightest impression of being on the spectrum. People sometimes insist that there's nothing going on with him; that he's but a normal boy. I prefer to take that as a compliment. This all means that he has managed to learn what is necessary to make his way through the world and interact adequately with people by his own means, since unfortunately, we will not always be there to help him. Last year we got a call from the school congratulating us on his incredible all-around performance, knowing how difficult a road he had traveled.
Among the many books I read during this time, I found Temple Grandin's books to be especially inspiring. It's just different hearing a firsthand account from an autistic person rather than the cold analysis from a professional. It gave me greater insight on how to aid my son as he struggled along and allowed me to really understand the importance of sensory integration, despite how little is known about it. What impressed me the most was the thought that her mother—living in the 50's without internet—was able to pull her through her hardships. I had no excuses for not doing my part, having the internet as my ally. She would hammer home in her books that we as outsiders tend to focus too much on odd behaviors in a vacuum as just "things autistic people do" rather than getting to understand them as reactions to their way of processing environmental stimuli.
First step was to take full control of the team that worked with my son instead of leaving it in the hands of someone else. I put his psychologist in contact with his occupational therapist, for instance. Little by little, helpful angels appeared along the way, aiding him forward. I shouldn't neglect to also mention that I went to church regularly to pray. There, I felt at peace; I felt welcome. It was incredible to feel so clearly how my doubts vanished before me when I had a chance for a moment of peace.
I would go in not knowing how to solve a situation, handle a behavior, teach something, or simply desperate because my patience had run out, and I would leave recharged with newfound wisdom, tolerance and with the desire to keep pushing forward. I really felt that God was placing answers in my mind. And so, I learned to ask for wisdom more than for anything else, and little by little I was able to be more creative, to handle certain situations better and to be more patient with myself. Later I dabbled in meditation as an evolution of this, connecting with myself, with God, and with the universe, and realizing that the answers to everything are there for you, you just have to decide to look for them.
Ever since his younger days, we knew my son to be a skilled artist, specifically with his drawing, and we were lucky to have gotten another angelic envoy in our life; an artist who gave classes to special needs children, who also lived nearby. So, he started working with Angelica, whom I also put in contact with our psychologist. She was a great ally, as it was through painting, which he loved so much, that he would work on following rules, keeping his tantrums in check, and executive functions—those abilities that allow him to start something and be able to finish it. Besides, it was a real boom for his self-esteem—he himself felt how skilled he was! It wasn't all negative! Self-esteem is essential, and sometimes we think it's about telling kids how good they are at something, when in reality it's about them being able to feel by themselves how skilled they truly are. For me, helping them develop their skills—allowing them to work on what they excel at—is as important as therapy. This is how their self-esteem is nurtured. During their teenage years, social relationships will be a point of struggle for them. Despite having worked with them and having given them every tool in the arsenal, it won't ever become an area they'll navigate with comfort, but if they have developed their skills and worked on what they're good at, their self-confidence will become key in compensating for their innate difficulties.
One aspect we still needed to put some work into was socializing and specially the concepts of authority and hierarchies. A friend of mine recommended what would become the next great step of his development; we signed him up for taekwondo lessons. Little by little we assembled our own taskforce dedicated to helping my son move forward. I would organize breakfast meetings with all of them where they could discuss their progress and give each other feedback so that they could keep on being motivated about their work.
Among my many searches and chats with moms from all over, I came across Defeat Autism Now! or just DAN!, a biomedical protocol for tackling autism which, after reading it from start to finish, reminded me of the work we had done with Dr. Kim in Costa Rica. I contacted a specialized laboratory in the States, and they put me in contact with a specialist who, to my surprise, was Peruvian, lived in Peru and had gotten into the issue because he had an autistic child. With him I learned that these children are born with abnormal metabolisms. Their gastric and immunological systems are weak, and when exposed to foodstuffs they can't digest, they develop allergies, their intestines become permeable, their gut flora becomes unbalanced, and they fail to produce certain necessary enzymes and amino acids, intoxicating themselves with the candida albicans fungus and various bacteria, and causing issues at a neurological level.
A couple of years later the time came when he had to leave the special education school to attend regular school because, as you know, you only learn to socialize by socializing! However, it’s essential to have acquired the necessary tools. He also proved to be an extremely intelligent boy and we did not want to set his sights low. Even though in our Latin American societies there are no schools suitable for children with ASD—at least not 10 years ago—now we're making some progress. However, there is still a long way to go.
It is often believed that Asperger syndrome and autism are two separate things. Until 2013, the DSM-IV, within the pervasive developmental disorders (autism spectrum), divided an array of different disorders depending on certain characteristics such as IQ, among others. Asperger syndrome was a PDD where people had a very high IQ, no language difficulties, and very marked obsessions. They lack any particular difficulties developing their vocabularies; however, they do not know how to apply this code properly to communicate with others. The name "pervasive developmental disorder" denotes a set of disorders characterized by delays and qualitative alterations in the development of social, cognitive and communicational abilities of the subject, as well as a repetitive, stereotyped and restrictive repertoire of behaviors, interests and activities. In most cases, their development is atypical from the earliest ages and its evolution is chronic. The word "disorder" implies that they don't function the same as the rest of people and entails several altered characteristics that make up a distinct life experience, but don't constitute an actual disease. "Generalized" refers to the fact that it affects all areas of the person's performance and "developmental" refers to the fact that it's present from birth and will continue to generate differences in their way of being that may or may not become more acute over time, depending on the way in which the person is taught what they need to learn to survive in the real world.
Nowadays, since 2013, the DSM-V no longer divides these phenomena and simply calls them Autism Spectrum Disorder (ASD), because, really, the characteristics are the same; what varies is their intellectual acuity and the intensity or frequency of appearance of these telltale characteristics, but in the end they are one in the same and are all handled with the same protocols and procedures.
It was a rainy Friday morning. I didn't want to get out of bed because I felt depressed, and without realizing it, I began to write on my laptop what would later become an educational project of inclusion. That is to say, the way I thought that these children and in general all those who have any special educational needs should be integrated. I asked two psychologists to read it and give their opinion on it, and they both thought it was very good, but it did not stop there. Now I had to see what I could do with these sheets of paper, which up to now were nothing more than an idea without execution.
My plan was to enroll my son at the school where I had worked and where my older children were still studying, as it would be the only place where I would have a chance to be heard. Once again, life put in my way a great person who believed and trusted me and gave me the opportunity to implement my ideas in that school. In addition to helping many other children and their families, it gave my son the opportunity to return to his school and continue to progress along the regular path. I had the opportunity to pave the road for him the way he needed.
And so, I decided to pursue my graduate studies and specialized in Special Educational Needs, Educational Inclusion, and the Autism Spectrum, then in Sensory Integration and Learning and finally I did a postgraduate degree in dyslexia. I wanted what I had learned to help not only my son; I wanted many more children to benefit from it as well. This all being said, I think it's fair to state that most of my important skills were learned on the field, through hands-on work on a daily basis, with my own blood, sweat and tears.
As I went on working with various children, I noticed that many of them wouldn't progress as I expected them to; as I knew they could. Often, it all went down to the parents. As long as parents fail to acknowledge that making sure their children succeed is their responsibility, their kids will remain stagnant. Whatever their particular struggles are, they won't be able to harness their true potential without their parents by their side. It's them—their parents—who will be with them all the way to adulthood. Teachers, therapists, and professionals are important, but transitory. It’s us, the parents, who should become experts on what ails our children, as it is us who will accompany them throughout their hard road to adulthood. Children learn every hour of the day, and therapists aren't going to move in with you to be there every one of those hours.
Tantrums and crises are our guides. They tell us where we should intervene, prepare plans of action, and picture where we want to be when our children grow up. That's when my husband's help becomes invaluable. His pragmatic mindset helped us plan out a route. For instance, our son wouldn't accept "no" for an answer. One day my husband told me “What will he do when he's twenty and a girl says no to him? Will he hit her?" I'm his mom and once I had to go to the emergency room because he threw out my back in a tantrum when he was five. What would happen when he's fifteen and I'm unable to hold him back? So we knew that self-control—being able to take "no" for an answer—was a priority.
When faced with extreme situations, we tend to believe that outsiders will be able to come up with better solutions than ours, so we over-rely on therapists—we get scared, believing ourselves to be insufficiently patient, capable or prepared, or maybe we don't think we have the time to deal with the problem ourselves. This is all normal, but it's become clear to me that there's nothing that commitment and love are incapable of achieving. This is a process in which we as parents must make radical changes in our lives, and even though it might not be readily apparent, it's a process that presents an array of opportunities for personal growth.
Several years ago, I started working with parents of children on the autism spectrum, as well as children with pragmatic language disorder and sensory integration, as both disorders share many of the same key characteristics, and so, also share many of the same treatment processes. The results were outstanding! It was clear that children began a speedy growth down the right path once their parents got over their own fears and emotions and started to learn how their children's brains operated and the reasons behind their every peculiarity, as well their needs and coping strategies. They must learn that they're capable of guiding their children through the world, as confusing as that world is for them. Parents became able to set limits adequately and began dealing with their children differently, figuring out the internal logic behind their attitudes and actions, and realizing that their children, with all their difficulties, truly are a gift. They make us value life differently; face our fears and develop new skills we didn't know we had inside us. With them, we become better people.
Today I work not only with children on the spectrum, but also those with other difficulties such as dyslexia and learning disabilities in general, and pragmatic language disorder. Each one of those kids teaches me a lot. I believe that if life puts them in my way, it is for a reason, and often the most complicated cases are the ones that bring me the most satisfaction. It's fantastic when you're able to lay out a path for each child to move forward, but it’s clear to me that those whose parents are committed, involved and willing to make the necessary changes, always move faster and with better results.
I decided to write this book sixteen years after embarking on this adventure; one that I never sought out. My intention is to have the opportunity to reach people who could benefit from what I learned and make the road a little easier for them, although the road is long and each stage comes with its own hardships, as each child and each family is different. I am convinced that acquiring knowledge is the best tool we can have to face such situations correctly and objectively. My plan is to present throughout the chapters of this book all the pieces of knowledge that I believe are necessary to understand to face each challenge in a holistic way. There are several steps that our children need to overcome: each with their own difficulties, and each equally important.
In my search I've come across all kinds of approaches to autism. There are those who defend the idea that neurodiverse children should be accepted as they are and not forced to be different—that in order to prevent them from feeling isolated, the best thing to do is to keep them with other autistic people, where they would feel comfortable with each other, which is certainly valid.
I totally agree that every human being should be accepted as they are, but I do not agree with the rest. I believe that, since us parents can't be by their side forever, we need to raise these children to become fully autonomous adults, capable of living in the real world, because that is where they will have to live their future lives. Undoubtedly, they will always have their peculiarities—their essence is their essence, after all—and most likely they will look for friends who are similar to them, but our task is to teach them to survive in a complicated world; to love and accept themselves as they are; to know themselves, because they will be happy as long as they are at peace with who they are; to have a high self-esteem; to develop their skills and obsessions, because it's most likely than not that their future profession will lie in them; and to develop from childhood the social and communication skills necessary to perform that profession.
We must get used to the idea that the meaning of happiness for them may not necessarily be the same as for us, and if we want them to be happy, we must accompany them in their search, as after all, happiness is within each one of us.
• • •
HOW SO "DIFFERENT"?
Although no two human beings are alike, there is a group of people who coincide in presenting a set of similar abnormal characteristics. Psychology and/or psychiatry has placed these people within the autistic spectrum, which could be understood as a parallel continuum where—without considering factors like their skills and intelligence—they are grouped together because of certain criteria they share that radically affect the way they understand and interact with the world; a new way of approaching life as a whole that differs from that of people outside of the spectrum. Although these characteristics may manifest themselves with different frequencies and intensities, or in response to different triggers, they in the end are the same, and the way these people need to be helped to better engage with a confusing world is also the same. These differences manifest in all aspects of their lives, and are often evident in social skills, pragmatic communication difficulties, sensory integration disorders, and restricted interests and obsessions. Just how no two human beings are alike, no two autistic people are alike either.
Imagine a cloud, inside of which various disorders are floating around, each manifesting in an unusual way and each with different intensities. Any given autistic person has a unique set of difficulties and intensities, but in the end, they all share the same core characteristics. Additionally, they tend to display comorbidity with other disorders, such as attention deficit disorder (ADD), learning disabilities, dyslexia, Tourette's syndrome, and many others, making it often difficult to reliably diagnose them. I've heard of diagnoses that've been entirely erroneous solely because of a lack of knowledge and experience from the evaluator, who diagnosed the patient with a different disorder, leading them to being unable to properly tackle their real condition for years until their symptoms get properly assessed later in life, costing them those crucial years of their youth when it's critical for them to learn many skills relating to their condition. I've, for instance, encountered many cases of young autistic people whose parents had always been convinced they suffered from ADD. They spent years getting that treated to underwhelming results, as, even though autistic people do experience difficulties paying attention, it's not necessarily a case of an attention deficit disorder.
There's a group of people who—although not within the spectrum—showcase a range of diminished communicative skills due to a social/pragmatic communication disorder. Kids with this disorder, while not autistic, share many similarities with autistic children, which is why I consider this book to also be a valuable tool for parents and teachers seeking to learn how to assertively help these children. Although these kids showcase no inherent difficulties developing their social skills, their struggles communicating with others may lead them down very similar paths.
The mind of autistic people works differently to the "normal" mind. Although "normal" may be a misleading term. I prefer to say, "the majority" rather than "normal". If we happened to be in an auditorium full of autistic people, with a few neurotypicals here and there, the "normal" way of thinking would be the hyper-logical, literal, rigid, strictly visual one that autistic people tend to have.
We could explain their thoughts as being those of a mind with entirely different wiring, and that if we sought to rewire them—assuming this were possible—it would end up being neither what it is now nor what we would have liked it to be. Their mind being wired in such a unique way, it needs to be understood and taught according to its own figurative user's manual. The best way to help these people survive in the world is, on the one hand by us learning to be sensitive to their needs, and on the other hand by teaching them useful ways for them to learn. For both things we require an extremely high level of commitment as well as a high degree of knowledge about how their thinking works.
To better understand people with autism spectrum disorder, we need to know how differences in thinking can affect their daily life, and for this, it's necessary to break down how human beings process information and how cognitive activity occurs in any person. In neurotypical people, information processing occurs in 3 stages: Input, processing, and output. When all these stages flow correctly, the person's response is filtered by the context and what their environment demands. In people with ASD, this processing occurs differently.
The best way to understand the differences in information processing that cause the many of the struggles that autistic people go through is to divide them in two categories:
1. Issues with information management
2. Issues with information interpretation
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