When my son was diagnosed with Autism this past spring, I was open and honest with all of our friends and family about the diagnosis. We have been very open with everyone about the life we lead, and you can read this blog filled with content about our journey in raising him. It felt like it was my obligation to share with others what we had discovered. When we received the diagnosis, I felt this huge weight of uncertainty lift off my heart. For the first time in my entire parenting experience, I could explain so many of the nuances and quirks of his behavior and his personality. The day of the diagnosis I cried, but I didn’t cry for our future, but the tears that fell were because I finally understood my son.
Since our journey has always been open to all that have cared to follow our journey, I was prepared that there would be an outpouring of support for our family. I also realized there would likely be some questions, and perhaps there would be others that weren’t believers of the disorder to step forward. All of these things did happen, in fact, one person even told me back in the 50s and 60s Autism didn’t exist because parents beat it out of them. It seemed that people’s filters almost turned off when my son was given a diagnosis that impacted his brain. We were never given unsolicited advice on any of his medical conditions, and I wasn’t prepared for the onset of all the articles from unreputable sources of what caused Autism.
After several years of trying to figure out what was happening in my son’s development, the last thing that mattered to me was what caused the Autism. Frankly, if I looked back autism was a part of our lives from the time he was an infant, but I didn’t know what the name of it then. We had been living with the disorder for so long, that it honestly no longer mattered to me what caused any of it from happening. We knew from doctors, therapists, social workers and nurses that nothing was going to change his development at this point. He was neurologically who he was going to be, and his brain was going to process the world in a different way than the masses in society. Instead of focusing on the why of how it happened, I focused on how can I help him.
Once we received the diagnosis, I felt hope in my heart. There are therapeutic strategies that are used to help children and adults develop skills and independence. We learned via our team at a top Autism Clinic that for many Autistic people the sky is the limit for what they can accomplish. His staff told us about articles and research to be skeptical about and warned us about all of the sites and articles that push for a cure. Shortly, after we got the diagnosis, my timeline on Social Media started to explode with articles from various blogs, holistic and natural living pages about all the causes of Autism. There were articles on herbicides, GMO’s, birth trauma, vaccines, premature birth, medications taken during pregnancy, complications during pregnancy and birth, and heavy-metal poisoning plastered all over my feed by well-meaning friends. I received endless messages from friends about what they knew about the causes of Autism. Several wanted to put me in touch with other parents of autistic children so I could learn more about what caused the disorder.
Outwardly, I have been more than polite to everyone that has wanted to help or provide me information about Autism. Inwardly, I was screaming and fighting to not lose my cool. I realize some parents do want to know what could have led to their child’s diagnosis. If that is you, I respect that choice and your desire to uncover more on the disorder. For my husband and I, it has never mattered to us what caused his autism. Our only focus has ever been on how we can help him, how we can support him, and what we can do now to build acceptance of a disorder that is misunderstood. I want to tell people that share articles like this that there are so many faulty sources on the internet. Anyone can write an article on what they believe caused their child’s autism. However, our opinions or theories on what causes Autism for most are just that – views and ideas – because at this point science still hasn’t uncovered the reason. Furthermore, it is very likely that there isn’t one single cause because so many things happen in development that can impact the brain and how it processes.
Knowing what causes Autism also doesn’t help me figure out how to help my son. Many of the articles that I am tagged in describe Autism as a monster that swallows children and adults whole. The pieces seem to highlight the negative aspects of Autism often, and there is very little to help society help build awareness. Knowing a cause of Autism doesn’t help us create any awareness or acceptance. Tagging me in articles that negatively depict Autism also don’t help me feel positive about my son’s future. It reminds me how far we are from true acceptance of neurodiversity. What I need to know about is not the cause, but what I can do as his parent to help him and how I can best educate others about Autism. My fight is not to eradicate autism from this world or to help families from ever having a child with Autism. My fight is to help people realize that just because Autistic people process the world differently, it does not mean they are monsters or horrible people.
These articles also don’t help me to help my child have a high self-esteem. Could you imagine if I told you all the reasons why your child was born the way they were born? Could you imagine if in every article the disorder your child had was listed as a burden, a problem to society, and a disability that should be every parent’s greatest fear? Now imagine how that would make the parent feel. Then think of the child or adult autistic reading that same article, and seeing the hateful and harmful depictions of how they process the world. Autistic adults and children already have a hard time handling the social constructs of the world around them, and then they are constantly bombarded with reasons why they are a problem to our society, to our families, to our schools, and to our workplaces. These articles are not only detrimental to my ability to help my child, but they are harmful to the long-term self-esteem of my son.
By no means do I think people are sharing this content with me because they are trying to hurt my family. In fact, I believe that it all comes from a good heart and a desire to help my family. Unfortunately, we can sometimes hurt people by trying to help them. Instead of providing me or any other family with ideas, articles or reasons why things happen, it’s better to offer support. When I tell you my child is Autistic, I also don’t need to hear that someone is sorry. I am not sorry for the diagnosis. I am GRATEFUL we have a name, and we have a way to move forward in our lives.
There is so much known about what can help people with Autism, and truthfully what I need to know is how to help my son. Here is how you can help me and support me. I need suggestions for what therapy balls you use, what activities your child has had success with, where your child goes to school, how to fight the IEP process, and how to prepare my son for the world that doesn’t understand the beauty of his neurodiversity. If you can provide me with any of that content, I will gladly tell you to thank you. I will bookmark the link, and I will add it to my list of topics I need to research. These are the articles that will help me be a better parent and advocate for my child. Knowing why Autism happened doesn’t change our lives. The articles me feel worse about our journey. If you want to help, please respect the fact that I need support, not answers.