Into the Wilderness: Story 12
Raising Autism: Survey 101
I have yet to write about ASD, or Autism Spectrum Disorder. That’s because we had yet to make the connection. Girls are less likely than boys to be diagnosed with ASD, even when they manifest typical behaviors. Currently, boys outnumber girls with autism four to one and ten to one for “high functioning.” Moreover, when girls are diagnosed with ASD, it is usually later than boys, preventing early intervention and support. This is because most ASD research has been done almost exclusively on males who exhibit the “repetitive and restrictive behaviors” we associate with ASD- language delay, self-isolation social disruption, obsessions, conduct problems. In fact, to be diagnosed with ASD, psychiatry in the US requires the presence of repetitive behaviors and obsessions.
Autism Spectrum Disorder often looks differently in girls. Girls with ASD can be social, expressive and emotional. They may make eye contact. They develop close bonds with friends. They can be giggly, sparkly and unpredictable, just like any other girl. This is because they learn to camouflage their behaviors. Struggling to understand, read and nurture social cues and interactions, they mimic what they see. Not only does this inhibit diagnosis, it also means that the girl herself has a hard time knowing who she is. Her identity becomes interwoven or enmeshed with others, the authentic person receding behind a mask of imitation.
When girls do have more “typical” ASD behaviors, they are often missed or associated with adolescent female behavior. Girls often become obsessed with Barbies or fashion or make up, something we don’t usually question. But ASD researchers are now looking at how those obsessions can signal ASD and be missed because of gender bias. My younger daughter was obsessed with monster stuffed animals, which we indulged with cute, googly-eyed, snaggle-toothed cuddlies. To this day, her well-worn stuffed yetti remains a favorite.
But make no mistake, girls with ASD are as deeply impacted as boys. They are prone to emotional meltdowns and self-harm. Girls with ASD are more likely to internalize problems- anxiety, depression and eating disorders- compared to boys’ externalizing behaviors- impulsivity, hyperactivity, behavioral problems. This often leads to mental disorder diagnoses, which girls are significantly more likely to receive rather than ASD. This happened with both of my daughters, diagnosed with bipolar. That diagnosis has now been replaced with ASD.
One of the saddest risks for girls with ASD is a higher incidence of sexual assault. If you know our story, you know this is a risk we know all too well. Girls with ASD have a harder time reading people’s emotions and body language. They may not sense impending danger or realize boundaries are being ignored. Women without ASD struggle with the same- because perpetrators are often clever and manipulative- so it should be no surprise females with ASD are at greater risk.
Catina wasn’t diagnosed with ASD until nearly the end of RTC. Early in meeting her, however, Catina’s savvy therapist, as well as the school psychiatrist, raised the issue. They both noted Catina’s tendency to mold herself to others as well as her lack of identity and struggle with reading emotional cues. The confirmation, however, would not come for over a year later after another round of psychological testing. Catina had been tested three times previously- at 5, 12 and 15- and we needed to wait before another was given.
My daughters are very different in behavior. Catina is lively, silly, impulsive. Her younger sister- I am going to call her S- is serious, studious and cautious. Looking back, I can see how Catina’s diagnosis was missed. S is harder to explain. She isolates and withdraws. She is extremely sensitive to sensory stimulation, especially noise. She has always had obsessions- collecting monsters, anime and now physiology and brain surgery. She struggles through transitions. She needs a significant time alone to decompress, so isolation is her comfort zone. In elementary school, the witching hour for us was 4 pm after S came home from school. She would rage until 11 pm and nothing assuaged her. We tried everything. Now we know that she had used every ounce of energy to maintain a facade during school hours. Coming home, she just couldn’t do it anymore. The pressure had built up and her control valve couldn’t hold.
For many years, we thought bipolar was the issue. When S was 10, I took the first of many difficult steps. Her anger had overtaken the family, and we were weary. After a particularly violent outburst, we hospitalized her. If dropping a 15 year old at wilderness was hard, imagine leaving a 10 year old at a children’s psychiatric hospital. As with Catina at wilderness, however, that step became a turning point. While we now know the diagnosis was wrong- for she too wasn’t diagnosed with ASD until last year- she was stabilized. That nearly 4-week stay was followed by 5-months of partial-day treatment where she met a wonderful therapist who understood her. Working with him, she was able to gain some control of her overwhelming emotions. I’m inspired and amazed by the strength of my child and her ability to take on challenges most adults struggle to manage.
During this entire journey, my daughters saw pediatricians, neurologists, psychiatrists, psychologists, therapists, social workers, counselors. They all helped. I have no anger that ASD was missed. They all operated from the information we had at that time. Gender bias in ASD testing and diagnosis was barely being researched, if at all. The earliest study I could find from a perusal of academic literature was 2006, a year after S was born.
And it’s difficult to unravel life trauma from our behaviors, who we are and what we become. My daughters had been through their parents’ divorce and their father’s abandonment. Their mother, as I’ve written about before (see my blog posts, “Sunshine” and “Slow Burn”), wasn’t always the best at coping. Who would not rage from such losses? We humans don’t just rage against the dying of the light, to quote Dylan Thomas. We rage when life becomes too much to bear. When dissonance and disruption swallows us, sinking us down the gullet of longing and loss. Our world seems very much in such a moment right now.
So I cannot blame anyone for the miss. I am thankful we now have the right label so we can access the right resources. We have a new language for healing and a new reference point for understanding.
Perhaps the most powerful outcome of our journey together is the collective resilience we have built. With each improved coping skill, each step in better self management, each effort to stay in the calmness of what we call the green zone rather than the anger of the red or depression of the blue zone, we stand taller together. We know we have walked the burning jungle together and have come out stronger. If you look closely enough, you’ll see the singe marks on our toes, the embers in our hair, smoke puffs from our mouths, but we are together, and together, we are whole.
Walk the Moon 