Autism: What Parents See and Doctors Dismiss

Agenor Limón works at University of California at Irvine (UCI). He did his Masters and PhD in Physiologic Sciences at the Physiology Institute of Puebla, Mexico (BUAP). He is currently in his post PhD at UCI working on the properties of Neurotransmission Receptors in Neurological illnesses.

Agenor is a good family friend. His story is a fascinating dive into the world of parents struggling to help their autistic children, and getting unhelpful advice from doctors who don’t fully understand what they should be looking for or who dismiss them as paranoid. Here is his personal (and extremely well informed) story.

Autism, from the outside looks very different

It was a small room. The walls were light brown, and there was a desk. One side of the desk was against the wall. Adjacent to the desk was a small table with a gray typewriter sitting ready for use. It was an old fashioned typewriter with metal typebars and an ink band. Every time a key was struck it went: clack and stamped a letter; It’ll be difficult for me to forget the repetitive sounds of that machine. On the desk was an assortment of standard pediatric propaganda and other nick-nacks that were like magnets for my son’s hands. These “toys” were probably intended to sooth and relax patients; the wooden name plate on the desk read Dr. Enésima, Pedo-psychiatry. My wife was on the other side of the desk trying without success to control my son. Meanwhile, my mother and I were trying to listen to the scolding and the advice of Dr. Enésima.

We had already seen countless doctors. The speech was the same we had received from other doctors and was based in two theories: the first was that first time parents are prone to exaggerate any little problem they perceive with their child’s development, and the second was something like this: “You are a very young couple. You are inexperienced and immature, and you have a kid you don’t know how to raise yet. It’s so bad in fact that your own 1 year old son has noticed and is trying to control your lives and everything around him. He’s doing it with excessive tantrums, hitting himself on the head, not listening to you and basically having an excess of independence. To re-educate him you must attend parenting classes.”

Both theories always culminated in sending us to parenting classes for several months. However, what neither of these theories explained was why our son wouldn’t look at anybody in the eye for long periods of time, why he wasn’t afraid of anything, why he wasn’t interested in any sounds (sometimes it was as if he was deaf), and why sometimes he would spend hours doing the same repetitive movement. In retrospect, one of the most interesting questions was why he seemed terrified of the blender and the vacuum cleaner. So there we were in that room listening to Dr. Enésima for the hundredth time, but this time something different happened. That typewriter came to our aid! The moment the doctor started typing out our parenting class prescription, it became clear there was a relationship between the tap-tap of the machine and the screaming of my son. Every time Dr. Enésima used the machine my son would scream and cry as hard as his little lungs would let him, and he had very powerful lungs. Dr. Enésima noticed it and stopped writing. Almost immediately my son calmed down. Another tap from the machine produced another cry – wait and silence, two more taps and more crying. The machine was torturing my child! That’s when Dr. Enésima turned to look at us and finally believed what we’d been saying. Immediately she ordered an EGG (electroencephalogram), and a battery of other tests, for our son. She concluded our son had damages in the right hemisphere of his brain and that the electric activity in his brain was altered. Basically he had some type of epilepsy that can’t be seen but disorganizes the brain activity affecting his development.

Our lives drastically changed, and we started a series of battles that have not yet ended. We changed our priorities, dreams, wishes, and our perspective toward life in general. Some friendships made it through those days, others didn’t. As some friendships disappeared other grew stronger, they fortified us, and they endured. From that first day with the gray typewriter, 3 years passed before we finally learned that our son had a severe case of autism and that he probably would never speak or have an independent life. We also learned we were behind in a race against time to help our son reach his mental development potential. Throughout our trials we learned we weren’t alone. A few years back autism was considered a rare mental disorder seen only in movies; however the Center for Disease Control and Prevention (CDC) reports that its prevalence (the number of cases within the population), is high. The CDC says that in the US 1 of every 110 kids between the ages of 1 and 15 have it. It is important to note that the symptoms are so diverse that now doctors prefer to call them Disorders within the spectrum of autism. This new classification, being more inclusive, seems to have contributed to the increase of reported cases. The discovery that the presence of autism is so high has led to screening networks in many US states. Such screening is now compulsory for kids when visiting their pediatrician. The test is based on observations of the child’s behavior and questionnaires given to parents. It is called CHAT or M-CHAT and it’s given starting at 18 months. Generally there isn’t a biochemical or genetic test capable of detecting “autism.” The only exception is with Rett syndrome, a developmental disorder within the autism spectrum specific to girls. Treatment for the disorders within the autism spectrum is behavioral therapy and in certain cases the prescription of medication. It is most important to be alert and identify the first signs, because when autism is detected early, with interdisciplinary equipment and individualized training, there is a promising future.

A few years back, with the exception of cases where a person with autism showed high functioning, most autism patients ended up in psychiatric institutions. These days many live in “group homes.” However, recognizing the problem as part of society, providing treatment based on scientific evidence, and continued increased awareness (not just by affected families but also society in general) allows people with autism and their families to have better lives. Society keeps learning. The cause or causes of autism are not clear but the symptoms are the result of physical and chemical alterations within the brain; there is also a strong genetic component but it has not been clearly identified. As more scientists participate in the investigation of autism and development disorders, society will greatly benefit. By studying the mechanisms of normal and abnormal brain development we’ll also implicitly be studying the mechanisms of degeneration like the ones that cause Alzheimer’s disease and senile dementia. It is precisely that fight, the fight for retention of normal cognition, either at infancy or at old age, which makes society participatory at all levels. Thanks to that scientific investigation, my son can now speak and otherwise communicate. He even seems to be quite friendly. He still has a long way to go to reach independence. Perhaps he never will. But scientists and society are working hard and he is still young.