The Struggles of a Teenage Girl With a Late Autism Diagnosis
We entered through the glass doors and were swept along with the crowd up escalators, down long hallways lined with multicolored fluorescent light tubes hung as art. People walked in pairs, groups of three, parents with their teens, groups of teens.
We walked down a tunnel lined with pink and yellow glass through which we could see the long neck of the CN Tower, passed through a metal detector and down more escalators until we saw the giant letters we were looking for: HALL E. Swag bags greeted us at the entry to the hall, which was filled with tables full of university recruiting materials and swag to put into the bags. As we entered, we were surrounded by people wearing ‘Ask Me’ buttons and ‘I’m a student at….’ Trent, Waterloo, Nipissing, Ryerson, and so on.
A few years ago, this simple act of attending a massive social gathering to scout potential universities together, with my 17-year old daughter, Nikki, would not have been possible. Autism spectrum disorder (ASD) has only recently entered public discourse, after decades of being seen, if seen at all, as a fringe phenomenon that impacted the lives of the small number of children and families.
Understanding the differences in the traits and behaviors of autistic girls have lagged even further behind in clinical and public recognition and understanding. Getting here with my daughter, to the Council of Ontario Universities fair at the Toronto Convention Centre, and to an ASD diagnosis, has been a long and worrisome journey.
The Early Years: Worry Simmers
When Nikki was born, as anxious first-time parents, her other mom and I worried over everything: fussy eating, difficulties sleeping, learning to walk on schedule, first words, toilet training. Typical parenting issues. Nikki had a large round head, large blue eyes, and a serious expression even as a baby, drawing many admiring comments from friends and strangers alike. ‘She could be a Gerber baby.’ ‘Beautiful. You must be doing something right!’ Some of our worries seemed more, well, worrisome than others.
Nikki could spend hours sitting quietly by herself as a toddler, flipping through picture books, or arranging her Playmobile figures at a small table. But transitions from one activity to another, leaving the house, or being separated from her other mom or me to go to daycare often resulted in full-body meltdowns that could last an hour or more.
When she was really frustrated, she banged her head on the floor. By the age of three, she spoke less than 20 words, and shared a few of them, even as she acquired more, with anyone outside of her immediate family. She made eye contact, fleetingly, and had an unusual detachment as she quietly observed the world around her without seeming to be a part of it fully.
‘Could she be autistic?’ we wondered. But our friend’s son, one year older than Nikki, was diagnosed with autism, and she was not like him. She didn’t engage in repetitive behavior or have an obsessive interest in a single topic. She didn’t flap or spin. She did not have cognitive deficits that we could detect. To an onlooker outside of our home, she looked and acted ‘normal.’ At daycare and kindergarten, she thrived with the predictable routines. Shy? Yes. A little odd? Maybe. Autistic? No. Definitely not.
At age four, the arrival of her sister led to enough violent outbursts at home over the next two years that we booked our first appointment with a child psychologist. But at age eight, when her other mom and I parted ways, Nikki handled the separation quite well. She transitioned back and forth between our two homes as easily as any other transitions, which is not to say easily.
But by now we were used to managing transitions. Nikki was doing fine in school, excelling in French immersion. The home was reasonably calm. For a while, our worries moved to the back burner where they simmered. We didn’t know that the heat was about to be turned up and the pot would soon completely boil over.
The Middle Years: Temperature Rising
The first sign of real trouble occurred in grade five. Up until then, Nikki had a large, close friend circle that we, as parents, managed, with regular playdates and birthday parties rotating through each of our homes. This group of girls had been together since senior kindergarten, and we worked hard to keep Nikki connected.
Grade five is around the time that girl problems typically begin to emerge, and the straightforward parallel play of children turns into the complex social communicating of tweens. That year, Nikki withdrew socially, suddenly and completely.
At the same time, she began to have academic struggles in math and in meeting other school demands. After holding it together all day at school, Nikki would come home exhausted, frustrated and unable to communicate what was wrong. She reverted to her toddler style of communicating non-verbally with full-body meltdowns.
For the next few years, I feared that she would harm her herself, her younger sister, or me. This fear grew as she grew larger in size and strength. Some days, I wrapped her tightly in my arms as she struggled until the energy drained out of her. Other days, I locked her sister and me in the bathroom and waited for her to stop pounding on the door.
One day, when I stood in the kitchen at her other mom’s house waiting for her to pack her things, she screamed, ‘I want to kill myself!’ and emptied all the knives out of the kitchen drawer. What was wrong? Her other mom and I looked at one another across the knives strewn on the kitchen floor. What was wrong? We had no idea. We needed help. Nikki was nine.
In Nikki’s mind, the answer was clear: she was wrong. She knew what we had always suspected: there really was something wrong with her. But what was it? For the next six years, we saw a stream of doctors, social workers, psychologists, psychiatrists, teachers, special ed teachers, and tutors.
We went to parent groups and saw individual therapists while Nikki went to children’s groups and saw her therapist. We all went to family therapy. At the lowest point of all, we considered in-patient residential care. We went through assessment after assessment, attracting the diagnoses of oppositional defiance disorder, social anxiety disorder, gifted, learning disabled, and worst of all, anorexia.
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Puberty: The Pot Boils Over
In the Fall that Nikki entered eighth grade, she went on a healthy eating kick. ‘I’m not going to eat chips or chocolate for a year,’ she announced. At first, this seemed like a positive development. Nikki had always been a picky eater but never turned down pasta, chips, ice cream or chocolate.
She had always been average weight but was going through typical developmental changes and had gained weight, along with developing larger than average breasts. At first, it was just junk food, but then other food groups were eliminated until eventually there was very little food at all entering her body. In less than two months, between December and February, she lost 20 pounds.
Her heart rate and blood pressure plummeted. Her hands were chafed and bled. She stopped menstruating. She became irritable and aggressive and was cold all the time. In February we were in the emergency department every week. “Normally, we’d call a code blue, with a heart rate like this,’ one nurse informed us.
Our general practitioner referred us to the eating disorder clinic at the Hospital for Sick Children and a doctor we met in ER who specialized in eating disorders agreed to take us on in his already over-crowded practice, temporarily. ‘You need to supervise every snack and meal.’ Breakfast, snack, lunch, snack, dinner, snack. How do two full-time working single parents do this? ‘Can we hire a caregiver?’ ‘No, it has to be a family member, someone who has a relationship with her already.’
The eating disorder clinic confirmed the diagnosis of anorexia, the mental health disorder with the highest mortality rate, and referred us to a residential care program for extremely troubled youth. We chose instead to hire the services of a private psychology clinic for $2,000/month. The clinic specialized in Dialectical Behavior Therapy (DBT). DBT is a way of working with the tension between opposite, incompatible truths: you are fine exactly as you are (acceptance) and you can do things differently (change).
Within a year of treatment, Nikki fully recovered from the eating disorder. She recovered even though she did not willingly engage in treatment. Nikki did the absolute minimum to comply and never ceased complaining about having to attend “forced therapy.”
In her first group therapy session with a group of teenage girls, Nikki would not sit at the table. Instead, she chose to sit in a chair in the corner of the room, with her back partially turned towards the group. Eventually, she sat at the table but did not develop any relationships with any of the other girls. In her one-on-one sessions, she spoke as little as possible.
Up until the anorexia diagnosis, Nikki’s primary diagnosis was a severe social anxiety disorder. After months of Nikki’s therapist being unable to develop even a rudimentary therapeutic alliance, the therapist invited us into her office and made two life-altering suggestions. First, she said, ‘This does not look like social anxiety disorder to us.
A teenage girl with social anxiety does not draw attention to herself in a social situation by sitting outside a group with her back to them. She tries to blend in and be invisible.’ She paused while we absorbed this idea, before hitting us with the next. ‘We have never worked with a young person who is this unwilling or unable to connect with her therapist after a prolonged period of engagement.
Would you consider having Nikki tested for autism spectrum disorder?’ Our eyes widened. Nikki was about to turn 15. From ages 9 to 15, throughout multiple interactions with mental health professionals and teachers, in doctors’ offices, hospitals, community mental health agencies, private psychologists’ offices, and schools, not one professional before that day had suggested that Nikki be assessed for autism.
Autism in Girls
Until very recently, autism has been viewed as a male disorder. Statistics have shown that boys diagnosed with autism spectrum disorder outnumber girls at a rate of 4:1. However, Maria Szalavitz provides three good reasons to question these figures, in her 2016 article in Scientific American, “Autism-It’s Different in Girls.”
First, the foundational research on autism had been conducted on boys, meaning that the criteria on which an autism diagnosis is made are based on the presenting characteristics of boys. Second, girls have been less likely to be given an autism diagnosis unless they exhibit more extreme behaviors than boys and have an intellectual disability. Third, autistic girls are different from autistic boys in significant ways which have led to them being overlooked.
Recent research has found that girls on the autism spectrum make more effort to learn and mimic social rules, go to greater lengths to camouflage their social differences, have a stronger desire to connect, and are less likely to exhibit repetitive behavior and obsessive interests. Girls like Nikki very easily fly under the ASD radar. Many are misdiagnosed, diagnosed at later ages or as adults, or never diagnosed at all.
This ability to camouflage their social differences may seem to give girls with ASD an advantage, making it easier for them to ‘fit in’ with their peers and ‘succeed’ socially. Yet their heightened desire to connect socially is often thwarted by their social awkwardness, disregard for gender norms and sensory sensitivities that can make engaging in social events and sustaining social relationships challenging. High levels of anxiety and suicidality are common among even the ‘highest functioning’ girls with ASD. Furthermore, there is a strong correlation between autistic traits and eating disorders among autistic girls.
Many parents react to the word autism with fear and denial and grief. But for our family, an autism diagnosis brought almost immediate relief. After six years of assessments, diagnoses, and treatment that only ever seemed to capture a part of who Nikki was, this one seemed to capture them all. We had put Nikki through years of cognitive-behavioral therapy to cure her social anxiety when Nikki is fundamentally hard-wired to desire less social contact and different kinds of social contact than neurotypical children. Our social expectations were based on neurotypical standards of social behavior.
One of Nikki’s main complaints to us over the years is that we wanted her to be a different person. We wanted to change her. And she was right. Social anxiety, we were advised, is a highly treatable disorder. We wanted to cure her. But what she heard was that we wanted her to be someone else. And the cures weren’t working.
Over the next year, even before she received a formal diagnosis, we began to treat Nikki as if she were autistic as if her brain was different, but she was fundamentally okay just the way she was. With the threat of anorexia behind us, and without the constant worry that there was something terribly wrong with Nikki, we began to enjoy our daughter again. A lot of the tension eased out of her and out of our family dynamics.
Today, Nikki is a highly regulated 17-year-old with a devastating sense of humor, a highly analytic mind, and better writing skills than many of my 2nd-year university students. Does she still struggle? Yes. She has only one or two friends that she rarely sees. She doesn’t leave the house, other than to go to school or walk the dogs or long car rides with her family.
She is rigid about what she eats, what she wears, changes in routine. She worries about her future. Will she find acceptance? Will she succeed in university? Will she find meaningful, secure employment? Will she find love and have a family of her own? These worries are not uncommon among 17-year-olds, but from what we know about even ‘highly functioning’ adults with autism, she will struggle more than others.
Today, though, we are wandering around a massive, crowded, noisy, bright convention center. Nikki is making eye contact with strangers, asking questions about scholarships and accessibility services. ‘Should we go to the Waterloo booth? What about Carleton?’ We’ve been here for hours, my feet are tired, and I’m overstimulated by all the lights and sound and information. ‘Yes,’ I agree. Let’s go to them all. Nikki does not want to go home.
Szalavitz, Maia. (March 1, 2016). Autism-It’s Different in Girls. Scientific American. Retrieved from https://www.scientificamerican.com/article/autism-it-s-different-in-girls/
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This article was featured in Issue 88 – Knowledge is Power