awetism

saturday mornings here in the wee house start with fresh, dark coffee and chocolate chip pancakes. maya pours her first cup and lets me sleep in until she jumps in my bed demanding frothed milk for her second. these mornings are slow and sweet, and at this time of year, the heater is on, the dogs are snuggled together in the doggo bed, and kcrw is on the radio as i am warming the milk.

often the soundtrack to our morning ritual is the 9am radio show ‘life examined’ hosted by jonathan bastian. if you don’t know or listen to him, you absolutely should. his is a measured and gentle approach to all sorts of current and compelling topics that cover philosophy, wellness, addiction, individuality, love, and loneliness, to name a smattering. this morning’s episode was ‘autism, it’s not a disease, it’s a different way of being’ and as it was announced – while i was frothing and maya happened to walk through the kitchen – we locked eyes, cracked up, and high-fived as maya moved on to the living room.

my daughter is autistic. she doesn’t have autism, she is autistic. i frame it this way because autism is not something one has or contracts – like a disease, affliction, or disability – it is simply who one is. maya’s dad and i knew early on that maya was responding to the world around her in ways that were atypical of most of the toddlers who were a part of our lives. her pals would see the ocean when we’d gather at the beach and make a run for it. maya would be in my lap, fearful or uninterested in the expanse of sand and water in front of her, instead focused intently on a leaf or beach pail or sleeve cuff. she would not dance to the music we played for her but instead turn the cd cover over and over, running her fingers over the corners and ridges. she obsessed over books while the other littles were dressing up as princesses, and was reading by the time she was three.

ricky and i did enough research to know that maya’s autism was asperger’s, now called autism spectrum disorder, years before she was diagnosed. maya is deeply intelligent, perceptive and empathetic, with a quick wit and wickedly sarcastic sense of humor. she never really had the terrible twos and though we hit a wall around four, it was all very normal developmentally, and happening to friends of ours who had little ones around the same age. by this time ricky and i had separated, and as we were finding our way out of marriage and back to friendship, we continued to spend time together as a family. maya would hit sudden snags of frustration, communication or navigation, and i would watch as ricky would dispel the situation with humor. it astonished me, him inherently knowing how to de-escalate tough moments before they took hold (when they did it could take hours to restore calm) and so i watched and learned to emulate what he was doing. maya grew to understand the dynamic, and as she got older, would hit back brutally with one-liners or one-uppers as some of the tougher moments were collectively circumvented by wit.

elementary school was a perfect cocoon of safety and nurturing, and maya’s intelligence and tenderness was seen and supported by most every adult there. but she struggled with social dynamics, and when work or life had me unexpectedly driving by her school at recess, my heart would dissolve in to a thousand pieces seeing her alone on a bench with a book while other students were playing tetherball, jumping rope, or having snacks together. it happened more than once, and i would sit in my car and cry, then call ricky. maya and her classmates were getting older, and the unconditional kindness that had been a part of all of them when they were very young was disappearing. kids were noticing that maya was different, couldn’t keep up with shifting social norms, had trouble navigating dynamics, and was starting to stim more acutely to counter her anxiety. middle school kicked things in to high gear as hormones took over, and we watched our lively and beautiful girl get the wind knocked out of her again and again. maya made and lost friends as they matured more quickly and moved on, was bullied and harassed, and ultimately became very singular, eating alone, spending her time out of class with her nose in her phone, constructing a thick armor of deflection to protect herself.

many of the conversations ricky and i had over those years of middle and then high school circled around the idea of getting maya to adjust, integrate, normalize. it was not because we didn’t adore our daughter exactly as she was, for she is remarkable and funny and sweet beyond belief. but every parent knows the pain of witnessing your child hurting – it fills you with an ache that is bigger than any ache before it, and you will sell your soul and your most treasured possessions to take it away. i walked into maya’s high school – a tiny charter in a crappy neighborhood that we thanked our lucky stars for every day – and found my daughter sitting in an almost comatose state on the floor of the faculty lounge. she was fifteen, had gone off her meds without telling anyone, and plummeted into a loss of coping skills right in the middle of a morning class. i sat on the floor of that lounge with my arms wrapped around her and rocked her for an hour before gathering up her things so i could take her home and snuggle her into bed.

maya went back on her meds and told ricky and me she had thought she didn’t need them. the darkness and inability to function scared her, and seemed to mark a moment where she began to recognize and own her autism. life resumed but there was still that singularity – she didn’t have a special friend or group she connected with in school, and was overly connected to her online community, who had found one another on instagram & twitter during middle school. we worried, we got involved, we backed off. we scheduled frozen yogurt dates, looked for places where she would find like-minded, like-hearted teens to connect with. nothing landed. we worried some more. and then the pandemic hit.

maya’s high school was shuttered mid-day on march 12th. we got the call to get there as soon as possible; i pulled up to see maya’s classmates in front crying and hugging, not knowing when they would see each other again. i couldn’t spot my girl anywhere, and then out the door she came – petite, carrying her ridiculously heavy backpack, and trying to hide the biggest cheshire cat grin stretching across her face. i jumped up and down in front of our car so she would see me waiting, and when she did, she ran to me, throwing herself in to my arms, giggling and hollering and freaking out. the look on her face and the energy surrounding her were so anchored in who she was as a younger person, it took me a few moments to recognize both. even under that backpack a heaviness was lifting, and there in the mix of her happiness i cried, for the sudden knowledge of all the anxiety and masking and self-critique she carries every day was palpable and devastating, and the thought i kept having was how deeply exhausted my child must be moving through the world never feeling settled. we grabbed lattes, headed home, and i watched maya exhale years of stress for the rest of the afternoon, and the weeks and months that followed.

fast forward two and a half years. maya is in her second year of college. one year ago almost exactly she had surgery on her jaw and came through an intense three-month recovery with grace and tenacity. six months before that she graduated from intellectual virtues academy high school with honors, having thrived for a year and a half schooling at home and taking her first college course during her senior year. all of the loneliness, the heartache, feeling atypical, neurodivergent, always on the outside – all of these things i would wish away with a magic wand if given the chance. but in the same breath i use to articulate those words and that pain and this wish, i must also acknowledge that there is a resilience and fortitude in my daughter that got her through a set of months and years that many of her neurotypical peers couldn’t navigate. very slowly maya is integrating back to school on campus, she naps almost every afternoon which has quelled the exhaustion, and she is maturing, albeit more slowly than most. she is scathingly cynical and funny in the exact same moments she is innocent and unworldly. her tenderness runs deep, her touch could calm a wild horse. she struggles and lashes out and beats herself up for not being normal. what’s normal, i ask her, and why would you want to live there, where the landscape is just an average of common traits and behaviors? she laughs and rolls her eyes at me.

maya is still singular, but rather than trying to remedy it, i let it be what it is and trust that maya will find her people and her place when they are ready for her, and she for them. we are working to open doors that will allow her that kind of connection. she has her online community still anchoring her – at one point she told me that without them she may not be here – so i bless them and smile big when i hear her belly laughing in her bedroom as they navigate this turbulent world together. in the end, hers may be a path that is shared with only a few souls who get her. how lucky they will be. how lucky i have been all these years, witnessing and learning and guiding where i have been able. i’ve written it so many times before, she is my teacher much more than i am hers. her insight, her lens on the world, her armored outside and deeply sensitive inside. she is my valentine, my girl, my one and only. she is brilliant, lovely, autistic. she is perfect.

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