Holy Cow! My Daugther is Autistic!

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posted Nov 9, 2022

E. Marmer | Free to Navel Gaze

A few days ago, I learned that my 28-year-old daughter Sophie is autistic, and I’ve been walking around semi-stunned ever since. Not because the diagnosis changes any of the facts on the ground- my daughter is who she is and I’ve observed her social and emotional difficulties, and some cognitive processing problems as well, over her entire life. I’m stunned because a vital and previously absent piece of information has now been revealed to us, and the impact of that information is enormous. It is ground-shifting, for my daughter of course, because now everything that she struggles with and has over her childhood, adolescence and young adulthood makes sense to her, but also for me. I have a different lens in place now, and the consequences are profound.

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My Sophie is many things. She is passionate, she is sensitive. She is extremely intelligent, diligent, observant, loyal, funny, talented and loving. She is also a monopolizer of conversation and attention, brusque, loud, emotionally volatile, quick to anger or upset, preoccupied with how she is being judged, easily overwhelmed or distressed, and afflicted by several mental illnesses, among these, bi-polar disorder, borderline personality, anxiety, an eating disorder, OCD and PTSD. As her mother I quite understandably have dedicated much of my emotional energy to trying to understand her, support her, soothe her, navigate her abrupt reactions and changes in mood, and even “fix” her, just so she would have an easier path in life. I also continually asked myself what I was doing wrong. When she was a child and was unable to connect with peers, when she had a tantrum, when she lashed out and when she withdrew, I always quavered internally with the worry that I was blowing it. Did I not model correctly, did I not teach properly, did I not counsel or discipline or comfort the way I should have?

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These are questions that plagued me over the decades, to the point where I was often frozen with uncertainty, and incapable of any action or meaningful contribution in a variety of contexts. Ironically, and sadly, my uncertainty and sheer confusion, my feelings of deep concern for her and my fear of inadequacy as her mother, often led me to do harm during her childhood. I said unhelpful or even hurtful things in my floundering. I focused and lectured on the extremity of her responses instead of addressing the underlying feelings which produced them, which left Sophie feeling unseen and unheard, and moreover conveyed the idea that she was different, or “wrong”. I remained silent when I should have spoken and left her feeling alone in her experience of the world or in her own family. But perhaps the worst thing I did was broadcast through my eyes and facial expressions my heavy and helpless worry that she would not be able find her way in this world. Sophie saw and felt that concern there every day and took it to mean, as any child would, that she was somehow causing me pain. That is a terrible thing to show a daughter who knows she is different but doesn’t know why or how to change.

I know that I couldn’t have known she is autistic. The field just hadn’t advanced enough and only now is exploding with greater understanding of what autism is, and what are its symptoms. People now know that autism is not a linear spectrum, but more like a pie with sections which are filled in differently according to areas of deficit, which is why autism presents differently in different individuals. There has been a reckoning, moreover, with the failure to recognize symptoms of autism in female-presenting individuals, who are taught from an early age to be social, to fit in and please others and thus possibly are more motivated or skilled to mask the ways in which they are different. When an autistic person masks many aspects of their autism while still displaying others, it presents a perplexing tangle of seemingly erratic and confusing behaviors or tendencies that can create problems with family and peers, but which are all the more difficult to comprehend. It’s like looking at half a picture.

So, intellectually I know that I shouldn’t blame myself for many of the mistakes I made. And yet, I still feel great sorrow at having made them as there is no question that they had an impact, and contributed a great deal to my daughter’s suffering. Perhaps she wouldn’t have struggled with so much anger and insecurity throughout her life, or carried the resulting scars, if I had simply understood that a lot of her behaviors were not within her control or resulted from different cognitive wiring. These are things I cannot now change.

Going forward, however, this new lens brings tremendous clarity and a grounding for a positive future. My daughter burst into tears of relief when she received her diagnosis, and I wasn’t far behind. The central piece of a puzzle has been put into place. Even her other mental illnesses make more sense, because, as we’ve learned, they are very often present with autism, and indeed even directly related. Sophie, (and I) now know that she doesn’t need to change, that there is an explanation for how she is configured, and that the world is catching up to understanding and making room for people with autism. I plan to read all that I can about autism, and hopefully will be able to support my wonderful, complicated daughter in whatever ways I can with a greater understanding and an even greater appreciation of all her amazing qualities, her dedication to getting to the bottom of her unique emotional and mental makeup and her daily struggle to make sense of a society set up by the neurotypical majority. I’m so proud of her.

E. Marmer | Free to Navel Gaze

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1 Comment

  1. Lynn

    Very powerful

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