In 1994, I was diagnosed with obsessive-compulsive disorder, more commonly called OCD.
I was 11 years old, and at that point, my parents had known for several years that something was not right with me. If anything disrupted my routine, upset the order of the universe — whether it was a potato chip snatched from my bag by my father or my bed moved an inch too far from the window and thus clearly not safe for sleeping — I threw my whole body and soul into a theatrical tantrum my parents could do nothing to contain.
They tried everything — coddling, comforting, bribing, giving in and restoring the order I so desperately needed — or, many times, telling me to get myself together. And what getting myself together meant was to hide the howl inside me, to hide the disorder I didn’t yet know I had.
But by the age of 11, the signs and symptoms of my OCD were unmistakable, and I was prescribed Paxil, an SSRI that was indicated for children at the time. Exposure therapy, behavioral therapy and cognitive behavioral therapy were not really a thing back then for children, or even for adults. I just took my Paxil prescribed by my child psychiatrist and sometimes a Xanax prescribed by my pediatrician, and thus medicated, I was supposed to function normally.
In all probability, it was my parents and teachers who were able to function normally once my neural circuitry had been calmed.
My tantrums, my need for order and control, were largely understood at the time as a failure on the part of my parents to control their child, which was not true. My mother, the primary caretaker in the family, was often at her wits’ end, and without a doubt internalized her supposed culpability; she did everything to try to get me help so that I could change and get better control of myself.
No matter the parenting style she tried, no matter what she did, she hit a wall in much the same way that I hit a wall. I had the medication to balance me, to an extent, neurologically, but not the skills to enable me to calm myself, which would lead to numerous battles between my mom and me.
Parents of children having full-fledged tantrums in public were deemed to have failed to set limits and teach proper behavior. “What that kid needs is a good spanking,” far too many people would say, often out of earshot, and often straight to my embarrassed and exasperated mother’s face while standing in line at the grocery store or some other unfortunate public setting.
“No longer the frustrated, screaming child, I’ve become the mom to two frustrated, regimented, obsessive children. It IS hard on this side of obsessive-compulsive disorder.”
Yet we now know that there is a clear, well-known genetic association with OCD. Children suffering from OCD have a neurological disconnect; a circuit break in their neural connections, so to speak. Without the missing part to fix or close the circuit, we are rendered helpless, obsessing over the latest anxiety, refusing to let it go, performing curious compulsions that appear to be magical rituals but might relieve some of our anxieties.
Touch the doorknob 10 times before turning it, arrange and rearrange the toys over and over, count and recount objects, avoid eating anything of a certain color, pee three times before going to bed, never step on a crack, look for reassurance by asking the same questions over and over again, or reading through instructions just to make sure.
Yet as we continue to give in to our compulsions, we reinforce our magical thinking and obsessions, escalating their frequency until they greatly impact daily functioning, relationships and our ability to go places, learn and live.
It’s clear to me that I inherited my own genetic OCD predisposition from my father, a brilliant mathematician and analyst for years on Wall Street. His generation did not diagnose, treat or give much credence to psychiatric disorders, especially those where individuals could function to a degree. It wasn’t until 1980 that OCD was added to the DSM-III with criteria.
My father’s own need for order, routine and control, and his narrow focus and interests — which made him extremely successful, in retrospect — were functional symptoms of OCD. In all likelihood, he had inherited the trait and passed it on to me.
And now, the mother of three children, I see in two of them the same intensity, the same howl. No longer the frustrated, screaming child, I’ve become the mom to two frustrated, regimented, obsessive children. It IS hard on this side of obsessive-compulsive disorder, let me tell you!
As a physician trained in psychiatry, an educator and a mother, I get it. We drive ourselves, each other and the family crazy! But we now know so much more in terms of mental health, especially in children, than we knew about the disorder when I was first diagnosed three decades ago.
No one is their diagnosis. My children are not OCD any more than I am OCD. We live with OCD. And it is now much easier to live with OCD than it was in the past. The right pill at the right dose allows children and adults to focus in order to learn coping skills to deal with their obsessions and compulsions and to find pathways moving forward.
Photo Courtesy Of Amy Sosne
Like my parents before me, I felt helpless as one of my children could barely function because his anxiety and worries left him so distraught. No matter how much reassurance we offered, no matter how hard we tried to help him, he would shut himself off, unable to listen to me, my husband or his teacher as we tried to teach him strategies to cope with his anxiety. His lower lip would quiver with fright over his latest obsessions, and just as my parents had discovered with me, no amount of reassurance, bribery (yes, we all do it!), love or cuddling helped him.
With medication, the possibility of learning coping strategies is possible. Nonetheless, parental guidance, appropriate boundaries and appropriate medications are just not enough for children living with chronic neurological disorders like OCD.
We still need to supplement medication with therapy, and there is still so much more we have to learn about our youth, like the neurological effects of addiction to screen time, technology and real changes in the brain.
Cuts in federal aid can have devastating effects throughout the nation as funding for mental health treatment and mental health support in public schools is slashed. The Trump administration recently terminated $1 billion in federal grants for mental health programs in public schools, which will lead to the loss of school counselors, less training for future mental health providers and greater strain on remaining staff.
Research into chronic mental health disorders is also on the chopping block, while the Department of Health and Human Services and agenies like the National Institutes of Health, the National Institute of Mental Health, the Agency for Healthcare Research and Quality, and the Substance Abuse and Mental Health Services Administration are facing severe budget cuts.
That means that not only are we losing access to mental health support and resources, but our knowledge of the cause and treatment of mental health disorders such as OCD will slow, if not come to a screeching halt.
Photo Courtesy Of Amy Sosne
I grew up during the 1980s and 1990s, when there was no widespread awareness and access to mental health services or much knowledge of mental health disorders in children, diagnosis and management. But there was a great deal of stigma associated with mental health disorders in children and in our society in general.
Children were often dismissed and labeled as bad; dysregulated, emotionally volatile, stubborn and even spoiled children who failed to listen to parents and/or teachers.
The 1990s were a decade when the primary belief was that “normal” kids could absolutely control their emotions, actions and reactivity if they just tried hard enough or had enough compassion for their parents or teachers — or if their parents and teachers tried hard enough or showed their children more compassion.
Students or children who misbehaved, didn’t follow directions and were emotionally dysregulated were generally punished in the hopes that a negative consequence would change the child’s behavior.
And a lot of times, it did, because fear is a great suppressor of emotion and can put nearly anyone into a survival mode in which emotions, obsessions, compulsions and rituals are hidden and/or suppressed, and a child will do anything to just not get yelled at or punished.
“Losing resources and our capacity to learn more about the causes and treatment of mental health disorders will hurt children and families.”
Fear works in the short term. If you want someone to run, have a lion chase them. But this type of survival mode or sprinting mode that activates the sympathetic nervous system is not sustainable without long-term consequences. Maintaining this state has psychological costs as a developing child’s feelings are invalidated, causing them to feel emotionally insecure or unworthy and helpless.
There are also physical consequences when the body remains in a constant state of stress, causing further imbalance in the sympathetic/parasympathetic nervous systems. We all seek homeostasis of these two branches of the autonomic nervous system, and in order to maintain this gentle homeostasis, we need to understand how our minds work, as well as how to cope with stressors and imbalances.
Losing resources and our capacity to learn more about the causes and treatment of mental health disorders will hurt children and families, cripple science and threaten any awareness, progress in treatments, destigmatization and prevention of mental health disorders and crisis that we have made in the last few decades.
By recognizing the biological basis of chronic mental health disorders that affect neurological processes in a child’s developing brain, we are better able to parent, to teach and to interact with children unable to control their cognitive processes, emotions and behaviors.
Preventative therapy and medicine are always more efficient; let’s not pull services that help individuals and families function, survive and excel, only to increase mental and physical health crises that flood the ERs, tax our physicians and still provide only the short-term solution – survival.
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