Why Growing Up With an Autistic Mom was an Invaluable Gift
"She's intent on growing and learning as a person, while being true to who she is, and I can think of no better role model."
April 2nd is Autism Awareness Day.
Growing up I always knew my mom and I had a unique type of relationship. I've often referred to it as more of a friendship a la Gilmore Girls, which aligned to the psychic reading my mom received many years ago when she was told we were sisters (me older, her younger) in a previous life, living in an Italian vineyard. There were some undeniable truths in that reading, which carried over to the present. One being my passion for wine, and the second being how I've always felt like a protector and guide for my mom, who I later found out had Asperger's (now known as Autism Spectrum Disorder).
I was often the more responsible and even-keeled one, which naturally parlayed into my taking on the role of my mother's confidante and sage counselor at times. I was always hyperaware of my mom's behavior. It was normal for me to school my mom on certain social etiquette norms by reminding her that there was a time and place for certain topics of conversations, and not everything that came out of her mouth, especially the blunt truth bombs she would throw, deserved to be said. I also quickly recognized that my mom had to eat her dinner in a precise manner each night because it gave her a sense of comfort and safety and that excessive loud noises greatly annoyed her.
While I knew since I was a young child that my relationship with my mom was unlike those around me, I didn't know the reason why until I was 22, when my mom called to tell me she was diagnosed with Asperger's. My mom had struggled for decades with feeling misunderstood and out of place. Finally, at 45 years of age, she sought answers.
Brittany Ferri PhD, OTR/L, CPRP, occupational therapist, tells HelloGiggles this is often the case for the estimated 5,437,988 (2.21%) adults in the United States who have Autism Spectrum Disorder (ASD). "Adults are usually diagnosed later in life as a result of other issues that may come along with Autism, such as persistent depression or anxiety," says Dr. Ferri, who adds that psychiatrists, psychologists, or neuropsychologists can diagnose Autism in adults. After my conversation with my mom, there were two things that stood out clearly: The sound of relief in my mom's voice for finally knowing why she was the way she was, and, then, my wondering, "What the heck is Asperger's?"
"The term Asperger's is no longer used, as it is now recognized as being part of the larger umbrella that is an Autism diagnosis," she says. "Level 1 is considered high-functioning/Asperger's, with the two remaining levels categorizing those with moderate or severe symptoms. Symptoms may include difficulty picking up on social cues; heightened emotional sensitivity; a strong preference for structure, routine, preferred hobbies; difficulty adjusting to change; and unique ways of speaking."
Today, we have a number of popular pop cultural references of those on the autism spectrum, like Sheldon Cooper on the Big Bang Theory or Julia on Sesame Street. But back in the early aughts when I first learned about Asperger's, there weren't a lot of examples—or even a meaningful dialogue—of what it looked like or meant to be autistic.
Then, thanks to some internet searching, I discovered the symptoms of Asperger's that Dr. Ferri described above. Suddenly, my childhood, and my relationship with my mom, made sense.
We were like Rory and Lorelai not because she was simply a "cool mom" but because my mom didn't know how to create or maintain boundaries, and because she struggled with the difference between intimacy and codependency.
Since then, both my mom and I have realized the whys behind the intricacies of our relationship, including why she relied on our connection because it was difficult for her to maintain friendships. And why it was up to me, her only child, to remind her when someone was making a joke or being sarcastic. And why I also learned how to help ease her anxiety meltdowns, or give her space when she needed time alone. Growing up this way didn't come without its fair share of challenges for both of us, which, according to Dr. Ferri, is normal when it comes to having a parent on the autism spectrum.
"Studies show that parents with Autism report far higher levels of stress than typical parents," says Dr. Ferri. "This stress certainly spills over into a child's life and kids may even unknowingly or directly pick up on the stress they are causing their parent." According to Dr. Ferri, this can lead to emotional and physical health concerns, while also making a child feel burdensome. "Children may also be thrust into a 'caregiving' sort of role from an early age, in order to compensate for areas that their parent might struggle in. This can certainly cause resentment stemming from feeling a loss of childhood, innocence, and having to grow up far too fast."
As I've continued to dive deeper into my own emotional and mental health, including exploring my family systems, I think about this a lot and I have mixed emotions about it. It's obvious I was a caretaker to my mom at a young age, thrust into a role that neither of us wanted me to play. I often think back to an incident in which my mom lashed out at me at a bookstore when I was a young girl. She was overwhelmed by her surroundings and lost her temper on me. I remember telling her that "people now think you're a bad mom when you're a good mom."
I think back to the little girl who wanted her mom to do better at times but didn't understand why she struggled.
On one hand, I've accepted that my relationship with my mom will never be the traditional mother-daughter relationship for reasons that are out of my control. On the other hand, I do wish our relationship wasn't one in which I had to play the mom. However, I know my mom has guilt around this, too. I know sometimes she wishes she could've been "different" in a more "neurotypical" way. But the truth is, I wouldn't want my mom to be different.
The thing is, my mom is a really good mom. Growing up, she insisted on me maintaining beautiful friendships because she always struggled with doing so herself. As someone who struggled with finding her purpose in life, she made sure to instill me every night at bedtime that my dreams were worth pursuing. Her bluntness (a characteristic of some on the spectrum) has allowed me to speak my truth at all times. And my mom's unabashed commitment to being herself has inspired me to do the same.
She's intent on growing and learning as a person, while being true to who she is, and I can think of no better role model of what it means to live an authentic life as someone who's always been made to feel "different." While she continues to have some difficulties related to ASD (like being overwhelmed by external stimuli, such as long car rides and sharp noises, and can often second-guess her social interactions with others) I have seen her develop into someone who's more confident in her skin over the years, which has been really beautiful to witness. And as I've done the same, I feel very much loved and adored by my mom.
Dr. Ferri says there is a common misconception "that those with Autism don't know how to love or won't be able to love you in the way you want them to" and while there may be a "disconnect in the relationship at certain points in time, parents with Autism are able to engage in full relationships with their children." I know this to be true.
My mom and I are able to talk about everything and anything together—and we laugh a lot. While we might not see eye-to-eye all the time (like most mothers and daughters), our connection has only deepened over time. She accepts me for me, even if she might not understand why I do the things that I do. She might not be the most physically affectionate person in the world, but she showers me with gifts and acts of service (common ASD traits) whenever she can.
However, the biggest gift I've ever received from my mom has been our relationship. I see our dynamic as not only one born from necessity but also one that has taught me about love and compassion in a meaningful way. She is my best friend and through our special connection, she has taught me not to love someone for who you want them to be but to love them for who they are. Our relationship is far from traditional, but it's ours and I am proud of it. We understand that neither of us is perfect but we are perfect for each other.