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Raising a Child with Autism as a Single Working Mother

By Megan Warren


The Struggle

Those first moments were so beautiful – the relief of birth, the feeling of my child, part of my deepest heart placed wetly on my chest, swollen with the wonder and disbelief of the miracle I created.

Reality crashed in pretty quickly and that wave crested in the tribulations of breastfeeding. Trying to cram my overly large nipple into that tiny flower mouth was only the beginning of a lifetime of learning to do the impossible. Moment by moment, I constantly skirted the edge of survival, mine, and my child’s. The cracks that made my nipples look like dragon scales. The milk that didn’t come in. That flower mouth was beautiful but ineffective – poor bub couldn’t suckle. Chained to the pump, battling yeast infections on my nipples, I wasn’t prepared to cope with parenthood. And that was just breastfeeding.

Constantly exhausted by confusion and terrific self-doubt, I would roll over in bed finding no one to wake up with my unfathomable fears. There was no outlet for my anxiety, no one to share my responsibility for being a whole world for my child: the teacher, the medic, the role model, the financier, the disciplinarian, the nutritionist. There was no one to help make space for me to create the unconditional love I gave to my child: I couldn’t find the precious moments I needed to replenish my love bucket with self-care.

And then maternity leave was over in a blink, and I handed off my flower-mouthed heart to strangers. That was when the full-frontal assault on my sense of success began. I quickly discovered the life model I used prior to the birth of my son was no longer valid. In that model, I was what I did. All of my worth, my self-identity, and my self-esteem were bundled up in the career slice of the life pie. This created a deep internal rift: I could not be both my job and my heart.

I woke up every morning with a desire to become the mattress. I envisioned it splitting open and swallowing me whole, absorbing me into its fluffy quilted nothingness. Waking up, I would struggle to sit up with the weight of failure dangling from each limb. I was a bad mother, entrusting my life’s blood to strangers, not home enough to properly care for my tiny prince. At work, swamped in a welter of counterposed emotions – guilt for leaving my son thronged with guilt for not working harder, longer; shame for being an absent mother twinned with shame for being an absent boss; disappointment in myself for not being stronger mocked me for not being two people with 220% energy; overwhelm hovered as the needs of everyone from my son to my staff threatened to swamp any last resources I had to draw on.

I was walking the edge of the precipice, one glance or misstep, and the failure I felt would be made manifest. If I couldn’t look at it, how could I tell anyone about it? I didn’t admit that the cliff was there, so how could I tell anyone that I was about to fall? Instead, I locked it up, moving stiffly through life, every muscle tight with the strain of keeping it together. The stiffness grew so familiar it became part of my DNA, it was the ache when I woke, the cardboard taste in my mouth when I tried to eat, the brittle edge of my smile when responding how I was. A mummy, I trailed my stale white rags through the aftermath of my success. I was fine.

The Second Bigger Struggle

It was in this context that my beautiful precious miracle went sideways. Spinning endlessly in a circle, he would shriek at the top range of sound that the human ear can perceive. Ears bled. He wasn’t speaking. He wouldn’t, didn’t, look at me. He didn’t call for Mama. He didn’t follow me with his eyes. He wasn’t perceptibly aware of my presence or absence. Wrenching my hands through my hair, which I had stopped washing, I watched as slowly my heart disappeared within himself.

A problem-solver at work, an optimistic fixer by nature, I moved quickly, knowing the value of decisive action. Desperation gave me fight or flight energy. Incessantly, I combed the internet, deep-diving into fragments of subjects that seemed relevant. Relentlessly, I reviewed my memories looking for a spark, a dot to connect, a rudimentary understanding. To no avail. I exhausted all options – nutritional deficiencies, balance issues, rare disease forms – before stiffly crumpling, alone, in the face of my worst fear: AUTISM.

I knew what autistic kids were. They were the blank-faced blocks in the corner of the nursery. They felt no personal connection to people. They were proof that emotions weren’t universal. An empath with a love language of touch, I did not want a vacant child. I was a fixer. I could cope with something that could be repaired or cured, something with a beginning and an end, with a process to follow. I could not cope with this. What was this? Oh please, oh please, don’t let this be the issue.

“What do you mean there’s a waitlist?! If my child has autism, this time is CRUCIAL,” I shouted into the phone in garbled French. Six months later, I clenched my teeth, moving even slower and more stiffly as the precipice ballooned into my peripheral vision. The welter of counterposed emotions intensified as disbelief tussled with relief and shame vied with disappointment for priority seating in my emotional theater.

The self-doubt that followed was intense. Did my stress at work cause this? Did I choose this for my child by hiring a babysitter who wasn’t trained and didn’t properly engage him? Did I eat the wrong things in pregnancy? Was it something he was exposed to in the environment? What was I missing?

At his diagnosis, my primary and enduring reaction was numbness. The world felt blank. What did this mean? Episodically, relief would pop her head up reminding me that at least there was something going on – maybe I wasn’t as weak and incompetent a mother as I had thought. But my emotional walls had grown so thick that the relief couldn’t penetrate their thickness for long.

For the most part, though, life after his diagnosis initially felt much the same, with the exception that I couldn’t find any emotional space at all. Before his diagnosis, when he would have an unending tantrum, I could find an outlet in my own rage and frustration. Now that he had a condition, I didn’t have the right to feel angry. I knew before the diagnosis that he didn’t do any of these things on purpose. Children that young don’t have motivation and intention to hurt or annoy – they literally aren’t capable of the intellectual capacity such intention would take. That said, it was easy to lose sight of it because we all grow up with adages related to children manipulating adults before they can walk.

The Emotional Toll

Lacking an emotional outlet, my frustration, rage, grief, disappointment, and worry spiraled inward, an imploding cyclone. Invalidating my feelings didn’t mean they went away, it just meant that I internalized them, getting stuck in a tunnel of stress. In daily life this translated to explosions of anger, mostly directed at inanimate objects: the refrigerator got kicked daily. Locked inside, these unresolved negative emotions took a toll on my health. Lacking appetite, I began to resemble a bobblehead doll, my shrunken body inadequate for my head.

Even when the stress manifested physically in weight and hair loss, I couldn’t communicate the sense of overwhelm I felt. The shame I carried with me rendered me mute – who was I to be overwhelmed, others had it so much worse. A persistent worry slithered through my thoughts, twisting into my chest, coiling on my solar plexus to ask in a soft whisper how weak and useless I was. I kept my lips sealed for fear that others would see my worthlessness.

At the core, it was the self-judgment – a lack of self-acceptance – that paralyzed me. Letting the emotions out meant admitting that I felt angry, frustrated, sad. It meant admitting that my pregnancy daydreams did not include a child I could not understand. My vision of motherhood did not include daily visits from therapists. Childhood memories ballooned up, floating visions of myself with my son at birthday parties, shaking Christmas packages guessing at the contents, taking swimming lessons, carving pumpkins for Halloween. My son didn’t communicate in a way that I understood, and much of what was communicated was frustration. He would scream with rage at 2 am: shaking his bed so hard that it woodenly crossed the room. I felt battered, jumping at each mewl, waiting for the next storm, and scrambling to defuse it before it arrived. In this way, I re-enacted scenes from adolescence, replacing my alcoholic father with my 18-month-old. The spike in blood pressure, the sense of constant alertness -hunting for clues in breathing, movement, sounds – the tenseness of a body ready for action were habitual sensations. I was living in fight or flight mode.

Wrapped around that alertness was guilt. Why was my son screaming? Was he in pain or just frustrated? Why couldn’t I help him? What was I doing wrong? Was he responding to my stress level? Was I a bad mother?

At the lowest point in this journey, I walked through my days head lowered in shame: I was a bad mother, employee, daughter, sister, friend. Feeling overwhelmed and incapable translated to an inability to cope with even the smallest things. A single working breastfeeding mother without self-care becomes a walking bomb, detonating at the slightest provocation. I can still remember the hot melting feeling I had when the mechanic announced that my car had not passed inspection due to incorrectly positioned fog lights. Given that the inspection was past due (ironically the inspection was supposed to have happened the day I had given birth, a week earlier than my due date), he could not let me take my car to the Volvo garage to have the lights aligned. I would have to have it towed. The volcanic reaction of gut-wrenching sobs as I clenched my wailing infant was only superseded by the deep dismay and embarrassment which washed over the mechanic’s face. Crying in public spaces, however – the grocery store, the street, the library – quickly became the norm.

The Learning

The overflow of pent-up emotion went on for a couple of years before I figured out three key things. The first was how to ask for what I needed – acknowledgment, help, a hug. Having learned that one wasn’t overwhelmed because God never gave you more than you could handle and your mission was to serve others, I couldn’t admit that I was overwhelmed because that up-ended the self-identity I had carefully constructed. If I was overwhelmed, not only was I not strong, I wasn’t able to do the thing that God intended, which he had carefully doled out. If I couldn’t manage it, then I was weak and useless. I wasn’t worthy. When I was able to untangle that Gordian knot, I realized that feeling overwhelmed was not only okay, it was normal. The only way out of the feeling of overwhelm was to own it and ask for what I needed. Accepting and acknowledging that I couldn’t – and frankly didn’t want to – do it all by myself, helped me release self-judgment. Muting the Inner Critic, I realized my self-condemnation contributed significantly to the pressure of my overwhelm.

The second learning I gleaned from some of those dark hours is that I needed to let myself grieve periodically. Grieve the child I had anticipated, the child I saw in my daydreams, the child I still, even after three years of child-rearing, expected to come around the corner. Invalidating my feelings, repressing the rage, the frustration, the disappointment, the shock, did not make them go away. It simply added resentment and suffocation into the mix. Hiding my feelings involved building a wall so big, I felt I had disappeared. Slowly, I learned to feel the feelings, to acknowledge and validate them without judgment. It was normal to feel disappointed that my child didn’t look up and smile when I walked in the room, it was normal to wish he would call me Mama. Wanting that didn’t make me a bad person. It made sense that I felt exhausted and defeated undertaking rounds of therapy while trying to maintain a semblance of leading my team at work. I hadn’t envisioned this as part of parenting. Wishing it was less stressful didn’t mean I didn’t love my son. Letting myself feel the feelings – raging, bawling, screaming, weeping – helped me release the emotions, leaving me feeling unencumbered. It also helped me feel seen. It wasn’t until I was able to see and accept myself that I was able to identify and ask for what I needed to create positive change in my life.

Re-becoming myself – a woman, a friend, a sister, a rock climber, a dancer – was the third thing I learned in the most recent part of the journey. It’s so easy to lose yourself in your child. It starts out as a combination of utter fascination with this miracle you’ve created plus blinding bewilderment – what did that cry mean? – as you try to navigate the mystery of parenting. Later it becomes a place to hide when you are failing in other areas of life: your child is a consistent miracle that you created – the one thing you did right – who smells of innocence and bunnies. After his diagnosis, I became a therapist and researcher, losing myself in the work of understanding and changing his trajectory. I lost sight of who I was outside of my son. There wasn’t time or space for it. And if I made time for it, it meant that I wasn’t doing something I should have been doing. Forgetting to put the oxygen mask on my face meant that I was unprepared for a bumpy much less a crash landing. Forgetting to put the oxygen mask on meant that I couldn’t connect with the other parts of myself that created a holistic identity. I was no longer a woman – I couldn’t connect to my softness, my sensuality. I had lost my rhythm, my strength, my curiosity, my leadership, my connection outside my son.

Letting go of the self-judgment that allowed me to own and meet my needs, helped me realize that I was not fully and solely responsible for my son’s outcome. I could support him with love, creating a stable and warm safe-haven for him, but my self-care did not detract from, and in fact was essential for, my son’s wellness. Logically I knew this, but I had to tussle with the self-conflict, the inner voice that insisted time with friends was selfish, to learn how to easily inhabit leisure.

The Peace

My son, the one I have, not the one I grieved, makes my nightly gratitude list. He is a beautiful charmer, full of mischief and joy. I don’t feel calm and peaceful every day, but the learning I have integrated in my journey makes it possible for me to grieve when the everyday childhood activities end in disaster. The wisdom I have found in my darkest moments helps me tap into my other sides to re-inflate myself when it flattens out, treasuring and nourishing those facets that contribute to a positive self-evaluation. Along this road, I’ve learned to ask for help and validation when I need to combat the sense of thanklessness.

Four years in, thanks to my son, I’ve grown as a person in ways that would not have been possible with a child that never challenged me. In my son, the universe has given me the beautiful struggle that I needed to step into my power.

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