More Than Awareness: My Family’s Journey With Autism, by Lydia Cubbedge

It’s Autism Awareness Month, and every year I’m flabbergasted by how many people still don’t know what autism is. There are so many self-advocates, parent advocates, social media posts, and YouTube videos dedicated to explaining autism, or autism spectrum disorder (ASM). There are shows with autistic characters, and yet when we go out into the world and interact with our friends and family, it’s obvious most people are not online enough to come across these helpful resources. I wish there had been so many ways of learning about autism when I was younger. It would have saved a lot of time and heartache as my family began its journey. In the last six years we’ve gone from knowing nothing about autism to living intimately with it. It colors everything we do, and it all started with awareness.

Let’s begin with a simple definition of a condition that isn’t simple. According to Psychiatry.Org, 

Autism spectrum disorder (ASD) is a complex developmental condition involving persistent challenges with social communication, restricted interests and repetitive behavior. While autism is considered a lifelong condition, the need for services and supports because of these challenges varies among individuals with autism.

It isn’t caused by cold mothers, vaccines, or taking Tylenol while pregnant. In some cases it seems to be genetic, but there’s no known overarching cause. Autism is a spectrum, meaning symptoms differ wildly. What all autistic people have in common is a set of criteria, set out by the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5),  experienced in different ways. It affects every aspect of life, from how your body and brain process stimuli to how you relate to other people. This variety of experience, ranging from low support needs to high support needs, hyperverbal to non-speaking, intellectually gifted to intellectually disabled, confuses a lot of people; surely autism ought to look one way, like on The Good Doctor, or, on the other end of the spectrum, like the kid in a documentary about institutionalization, rocking in a corner, unable to speak or look at anybody, unable to live in the world. The fact is that there are autistic people similar to both stereotypes, but neither stereotype is a real representation of an autistic person. Some autistic people, able to speak and work independently, need less support than others, while others require round the clock care. Forty six percent of autistic people are non-speaking, and the families and caregivers of those who can’t advocate for themselves easily are responsible for providing them with means of communication, either through devices, cards, or simply understanding and translating idiosyncratic modes of communicating. There are so many false narratives regarding autism; awareness is the jumping off point for a lot of families learning about their children’s minds, and from there its a small step to loving acceptance and helping create a more inclusive world, if we are willing to take it.

When I was a child a family we knew had a teenage boy with what is usually called profound autism. He couldn’t talk and as he was a tall guy, he could be very intimidating to tiny five year old me. He was a good kid, and his family was fantastic, advocating for him and making sure he had all the support he needed, which, in the eighties, was no small feat. Still, as a little kid, I was scared of him, and my parents, God love them, did not have the vocabulary or the ability to explain what was happening. It was the eighties and nineties, and the stigma attached to disabilities was much stronger. People didn’t like to ask, for fear of being rude, and despite the best efforts of Mr. Rogers and Sesame Street, I had no idea growing up how to treat disabled people, beyond being vaguely kind. Schools kept autistic kids separate, and my family stopped visiting the family with the autistic boy when I was still little. I had no idea as a young person that I would end up with autism being such an intimate part of my life. I was totally unaware of what autism was, how it looked outside of that one boy, until my son was eighteen months old. 

William, my sweet, curly haired hobbit baby, couldn’t speak. He never crawled, instead getting around by barrel rolling. He loved to wag his head back and forth, in what I now know was an early sensory seeking stim. It was adorable, but something was wrong. He walked late and once he started walking he ran laps, everywhere. He watched fans, wiggled his fingers in front of his eyes, and when he woke up in the night he had tremendous meltdowns, screaming for up to an hour at a time. The usual baby skills my husband and I had honed with three older children did nothing to calm him. He didn’t want to be touched, he didn’t want to nurse or eat, he wanted to lie on his rug on his back, screaming, while we could just sit there next to him to keep him safe. I later found out that sitting calmly and safely, maybe saying soothing things, maybe rubbing his back if he wanted me to, was how to do co-regulation. He was dysregulated in his body, and it was more than his mind could handle. By staying calm ourselves he was able to calm down, and we could then address the problem. He needed help, and a Google search and a few audiobooks later, I made an appointment to get him assessed for autism. Six months went by, and, during a pandemic, we were finally able to see a psychologist who diagnosed him with ASD, with a level two support requirement. 

We set out to learn as much as we could, fighting against our own preconceived ideas and internalized attitudes about autism and autistic people. It was eye opening. My husband is Gen X, and I’m a millennial, and we did not grow up in a kind and gentle atmosphere of acceptance when it came to developmental issues. We worked hard to stay up to date, to explain to disbelieving friends and family everything we knew about autism, what it meant for our boy, and how to give him the best chance at living a happy life. I don’t think we were ready for the comments. Well meaning people just weren’t aware of what autism is. They had no idea of the variety, and everyone wanted to know what could have caused it. Friends asked me how could he be autistic if he’s good with eye contact and so affectionate? How could he have autism when he has a good imagination? How did that happen? Nobody was autistic when they were kids!

People try to say the kind thing, even when what they say is patronizing or insulting. Now my husband and I were on the receiving end of the clueless attitudes we’d probably demonstrated towards disabled people when we were young and dumb. We had to explain, patiently, what autism was, how it worked, why our son needed speech and occupational therapies and safe foods. We had to explain why we never went to mass as a family anymore, because he had a hard time with crowds, noise, or clothing. Kind people said “just bring him, we don’t mind” not realizing that we didn’t bring him because he minded. Putting him into an environment where he would meltdown was simply not okay. We had to make choices that didn’t look “right” to people outside our family, and sometimes our best explanations to raise awareness didn’t work, and we had to be okay with that. For two people who really, really need people to understand what we say, it has been a small, annoying cross. 

So that is where our autism journey began: with a little boy on the spectrum, who slowly but surely learns language, has no physical impairments, and is as sweet as pie, but who requires a lot of support in his day to day life and has some developmental delays. We learned about autism, we accepted it in our son, and now was time to live our family life in relationship with other autistic people, thanks to our son.

It didn’t end there. Apparently, becoming aware of what autism spectrum disorder looks like can lead to seeing it in others. We soon discovered that the bookend children, eldest and youngest, were both autistic.

My first born is a beautiful seventeen year old girl, and she’s always been clever and gifted. She walked early, spoke early, got amazing grades through elementary and middle school, and is wildly creative and imaginative. She’s not terribly athletic or coordinated (it’s okay–I spoke to her when I was writing this article to get some insights), and she’s always struggled to make and keep friends. She was sweet and kind to others, but unless other little kids were also sweet and kind she couldn’t understand them. Social cues became harder and harder to figure out as she got older.  She’s always had issues with loud noises, needing her head covered when she slept, and her love for adrenaline boosting activities gave way to a need to stay calm and quiet. As she entered highschool, she found the myriad social mores impossible to decipher. She began to realize she mirrored whoever she was with, but was never able to crack the code to join conversations or recognize context based statements. Well aware of the red flags used to diagnose toddlers, our daughter began to wonder about herself.  Autistic self advocates with sensible, easy to understand videos on YouTube became her special interest, and one day she asked if she could get tested for autism.

Her father and I were a little taken aback at first, but as she started listing her reasons we quickly realized she knew what she was talking about. We took her in to see a psychologist and, in my daughter’s words “she passed the test with flying colors.” The girl was autistic. In fact, the psychologist was so pleased with her ability to identify and explain her symptoms she encouraged Philomena to write about it in order to help out other teenage girls on the spectrum. With the number of books and videos we had access to, figuring out her supports was relatively easy. She went through several stages of acceptance herself, but arrived in a healthy place of peace. Her struggles are still real, just different from those of her brother. Low support isn’t no support, and being gifted doesn’t mean life is easy, but she knows herself better now, and, again, in her words, wants awareness and acceptance to lead to kindness and respect for all kinds of autistic people. 

Becoming aware of autism opened up a world we didn’t know existed. With two kids diagnosed we are always keeping an eye out for the other two children in our family, as well as beginning to take note of some of the traits we’ve learned about in ourselves. While we don’t want to see ASD everywhere, it’s pretty hard to ignore some of the eccentricities, sensitivities and family histories once you know how it can present. In our family’s case there really might be a genetic component. This realization has been difficult; it is hard to see that the traits in our son and daughter were traits we had as children and still have as adults, to one degree or another. We both powered through childhood, always feeling a bit odd, a bit out of step. Maybe we were just odd, over or under sensitive, with funny ways of speaking and boring with our interests in legal theory or stately homes. This remains an open question; we may never get diagnosed. What I do know is that our family’s long, slow process of moving from awareness and education to acceptance and love led us to see autistic people clearly. That first step of humbly acknowledging we didn’t know, of learning, opened up a world in which we can actively help our children and see Jesus in people who are different. Awareness is the beginning.