When my son was diagnosed with Autism Spectrum Disorder in May 2017, I knew that there would be an onset of questions from friends and family about what could have caused his Autism. In truth, it has never really mattered to me what caused the Autism. We have been a part of the special needs community since his birth, and I have learned that many diseases and disorders don’t have known causes. My son has a condition called Panhypopituitarism. PHP (what we call it in short) is a disease where the pituitary gland is can be completely absent from the brain at birth, removed due to tumor later in life, or the gland exists but has stopped working. My son was born with an absent pituitary gland. Despite all of our testing, scans, and specialists we have seen over the past 4.5 years, doctors have never been able to identify why it happened. The best assumption we got was from a genetics doctor that believes he may have a connective tissue disorder, but this is a speculative hypothesis at this point. I spent many years trying to tie all of his diagnosis together, but there has never been an umbrella diagnosis to explain the list of his physical abnormalities. I had finally come to a place where it didn’t matter to me what caused it as long as we could treat the diseases he had, and we could provide ways to improve his quality of life. When my thought process shifted from what the cause was to how I could help him, our whole life improved from one where I needed to blame something to one where I wanted to help him.
When psychologists told us that there was an explanation from many of his behaviors, developmental delays, and global motor processing issues, I felt this overwhelming sense of relief. I knew the Autism wasn’t the cause of the medical problems, but I knew it was the cause of so many of his difficulties in socializing, sensory processing and his rigid, repetitive behaviors. I remember tears falling down my cheeks, and it was because I was so incredibly relieved to have a name for our struggles. We went public with his diagnosis as soon as we received it, and I was prepared for a lot of questions. The number one question I get over and over is about vaccines. I have friends share articles, documentaries, and books on the topic pretty consistently. I can tell you with certainty that vaccines did not cause my son’s autism. If you have wondered if there is still a link between vaccines and autism, you can search the internet and find articles on both sides. The truth is the major publications, government and autism support networks all believe Autism and Vaccines do not correlate. Here are a few Articles for your pleasure:
The list above is from reputable sources. The government has done hundreds of studies and has looked at over 1.2 million children to try to see if this link exists. Everything that is found on their end and by private studies is there is no associated link between vaccines and autism. Before I had my son, I did watch a movie called Vaxxed. Yes, there are compelling anecdotes of parents in the documentary that are convinced the MMR caused the Autism. In fact, this documentary almost caused me not to vaccinate my child at birth. However, when he was born, we spent a lot of time in the hospitals, and I learned from doctors and nurses about the vaccines. These practitioners helped me understand from a public health standpoint the importance of vaccines and how it prevents the spread of diseases that can cause serious illness and death.
Due to my son’s health, our vaccination schedule was incredibly delayed. Our delays were not because my husband and I wanted to do it, but because he was so sick that he couldn’t get the vaccines on time. He spent the bulk of his first four months of life in the hospital, and by the time he was released, we were already behind schedule. Due to the severity of his diseases, his doctors developed a vaccine schedule that would reduce his overall risk of side effects. Fevers are a common side effect in most infants from vaccines, but a temperature for my son with Adrenal Insufficiency can kill him if we don’t manage it appropriately. Our pediatrician wrote out a schedule to spread out the vaccines so that he would come in more frequently, and so he would only get one or two at the most each time. The schedule meant he would not get his MMR until he was closer to age two and the pertussis vaccine was several months behind which increased our risk to contracting whooping cough.
I felt confident in our vaccine schedule, and I trusted our doctors. At home, my son remained delayed, and we thought it was from his health issues. He had spent a week on life support, and we believed he might have a brain injury. We associated most of his delays to that critical illness. However, when he was about a year old, he did start to talk. His speech, babbling, and communication were age appropriate and on pace with children his age. He was saying some words, looking at us, engaging with us, and we were hopeful the illness didn’t damage his brain. Then at about 15 months, all his development stalled. He lost all of his words and most of his communication became grunting or babbling we couldn’t understand. I noticed he would stare at fans, wanted to be in a swing constantly, lined up his toys, didn’t play with toys appropriately, didn’t show empathy to anyone, and didn’t understand basic instructions. We had him evaluated by Early Childhood Intervention through the school district. The team came to our house, and the speech therapist said the word Autism almost immediately. She watched him line up cars, ignore her instructions, and refuse to make eye contact. At the time, I was reluctant to see it or believe Autism was there. I shared the information with his doctors, and they also weren’t convinced. We tabled the information to give him additional time to catch up.
His speech completely disappeared for several years, and he was non-verbal until he was almost four years old. In the midst of all of this, he got his vaccines and was up to schedule. We were already in the thick of therapy by the time he got the vaccines. He got a mild fever, slept most of the day, but there were no marked changes to him by the vaccine. We continued in private therapy and the schools and eventually sought a diagnosis in 2017 after several years of going back and forth on if it was or wasn’t Autism. When we got the diagnosis, it was like this heavy load lifted off my mind. I had known something was causing his delays from infancy, but there has never been a name. Autism Spectrum Disorder sounded like music to my ears. I am sure that is a strange reaction to some, but I felt the diagnosis was going to help us be able to help him. It never occurred to me to think about what caused the Autism because I had been living with it for almost five years then. Knowing the cause wouldn’t change how to help him, and all I wanted to do was help him be able to communicate, learn how to cope, and obtain skills to manage the sensory stimuli in the world. I may be in the minority, I don’t know, but I don’t want to know, and I don’t care what caused his autism. The truth is for our family is that Vaccines did not cause his autism.
We knew well before any vaccines were given he was delayed, and we were dealing with all his regression before he ever received the MMR. A lot of parents say their children regress after the shots. I can’t speak for them, but regression is common in Autism. My son still regresses from time to time. He went from eating by mouth to refusing almost all food and being tube fed. It is a part of the disorder, and for my son, it seems to happen most commonly with change. When things change in our lives, I notice he loses skills. I also know the skills aren’t lost, but that he’s not accessing the skills. Often the skills will return with help from our therapists, or he will eventually get back to doing what he was doing. It’s an aspect of Autism that definitely can be frustrating for a parent because you feel like you make progress and then lose it just as fast. I have learned to realize our journey will be filled with milestones being met and lost. Regression is not an aspect of his development I enjoy, but I now understand through his therapy team it’s normal. For more on Regression click here: Researchers say regression in autism common, variable, maybe universal
This article is not to shame anyone that believe autism is caused by vaccines. This article is our story about how vaccines didn’t cause autism. We knew from a very early age he was different, and it was well before vaccines were a part of our lives. I don’t disagree the anti-vaccination movement puts out compelling material about the causes, but I am confident in our doctors and our journey that our son was born this way. He has so many medical issues, had a critical illness as an infant, and he continues to be medically fragile. I believe in my heart all of this was predetermined in the womb when his fetus developed into a human. He was Autistic before he was ever born. Now my energy is focused on improving his quality of life, helping him develop skills, and providing him an education that will enable him some level of independence in the future. In truth, all I want for my son is to have independence, and I have to focus on that as my long term goal. I refuse to spend any more time thinking about, reading about or analyzing what could have caused his autism.
I encourage any new parent of a diagnosed child to research autism and vaccines. Go to sources that are reputable like the CDC, National Institute of Health or autism organizations like Autism Speaks. You will find so much information that will help you understand Autism. Understanding the disorder is the true way to help your child, and the more you know, the better you can prepare your child for the future.
We want to know how you have been able to accept your child’s diagnosis. What challenges have you faced in managing the uncertainty of not knowing the cause? Tell us below