One day Tracey Stewart and her daughter Jessica sat down with a psychologist, answering question after question. Soon after, the doctor had a diagnosis for Jessica – autism. At 23 years old, though, Jessica was first angered by the insinuation. But eventually, the surprising news changed her life for the better.
An organization known as the Centers for Disease Control approximates that one in 59 children in America are affected by autism. Because the disorder is a spectrum, everyone with autism experiences something different. However, one might broadly recognize it by a person having difficulties with communication and through acting repetitively.
Treatments and therapies for those with autism vary, with some people needing strong support and others requiring little intervention. Interestingly, more men tend to be diagnosed with autism than women. Some estimates suggest that twice as many men have autism than women, while others suggest that a staggering 16 times more males receive the diagnosis.
Experts have yet to pin down the exact causes of autism. It’s likely that it comes down to genetics, but it’s uncertain which genes contribute to the disorder. Fortunately, doctors can recognize the indicators of autism in children as young as two or three – and early intervention can greatly improve a person’s situation down the line.
That was not the case for Jessica Stewart, though. Her mother, Tracey, delivered her in November of 1994 after suffering from preeclampsia. This condition causes a spike in an expectant mother’s blood pressure, which can damage the liver, kidneys and other organs. Without treatment, pregnant women with preeclampsia can have serious complications and can even die as a result.
“My daughter came into the world in dramatic fashion,” Tracey recalled in a piece written for ABC News. “I had been hospitalized with preeclampsia and she was delivered via an unplanned caesarean at very short noticed.” And that high-stakes delivery marked the beginning of a tough infancy for Jessica.
Jessica rarely slept for more than an hour at a time. She suffered from colic, which meant she cried for hours every day – Tracey said her screams would sometimes last for eight hours at a time. On top of that, the new mom realized that her daughter’s development didn’t match up with the milestones described in a parenting book.
“She was a challenging baby and infant – she was hyperactive and it was difficult to grab her attention when she was focused on something else,” Tracey went on. But there were some bright moments for the new mom. As she herself put it, “Jessica was extraordinarily entertaining and charged into her new life.”
And because of that, Tracey had no indication that her daughter might have autism. Conversely, her mother said, “She was very sociable, didn’t have an obvious intense interest in anything, could be empathetic and nurturing, and was able to make eye contact with people.” This behavior continued as Jessica started school, too.
But Tracey did recall how her elementary school-aged daughter had trouble getting to know the majority of her classmates. Indeed, she chose to stay close to one or two friends instead. And yet, as Tracey wrote for ABC News, “at the same time, [Jessica] was very sociable and would happily speak to strangers.”
Jessica could easily conduct these conversations because she’d been, according to Tracey, “articulate from a very early age, questioning and intelligent.” As a student, though, Jessica constantly had trouble with writing, to the point where Tracey petitioned for her daughter to receive extra help. But she didn’t receive the support she needed.
At that point, Jessica began to slip through the cracks. “[She] not only fell way behind in her schoolwork, but fell into what I later recognized as depression,” Tracey wrote. Jessica’s sadness had caused her to “withdraw from the world,” and Tracey’s “effervescent, confident child was barely recognizable.”
Tracey was under the impression that Jessica’s shift in mood came down to the fact that she could no longer learn alongside the kids in her class. But little did she know then, her daughter was struggling because she had autism. And it would be years before anyone knew this about Jessica.
That was due, partly, to the fact that Jessica appeared to turn things around by the time of her adolescence. She had been a member of the Scouts for a decade – attending gatherings, signing up for activities and even developing friendships. Indeed, friends seemingly came easier to her here than they had in school.
Jessica also discovered that she had an eye for design, even earning a spot at a university to continue studying the subject. But she soon veered off the scholarly course. In fact, she embarked on what Tracey described as “a highly damaging relationship, which compounded years of deleterious school life.”
Around the time of her unhealthy relationship, Jessica experienced a dark period of depression. This time, though, it came along with anxiety; a combination that she seemingly felt unable to bear. Jessica tried to take her own life twice – and her family had no idea how much she was struggling.
That was because, as Tracey wrote, “[Jessica was] fiercely determined to make her own way through her nightmare.” So all her family saw was “volatile behavior and dysfunction,” and they had no idea where her outbursts came from. “We had no access to what was now, as an adult, her private life,” Tracey said.
Fortunately, Tracey and the rest of her family convinced Jessica to come home. Her daughter had become unpredictable and her emotions would swing from angry and antagonistic to depressed and melancholic – all within a matter of minutes. Needless to say, it was a difficult thing for her mother to watch.
“It wasn’t practicable for me to stay home from work every day to watch over [Jessica],” Tracey recalled of this difficult time. “Especially as she mostly slept during the day. But I would have dreadful days at work, experiencing rising panic that she would make another attempt on her life.”
A light, however, would eventually appear at the end of the tunnel for the Stewart family. In the midst of her deep depression, Jessica sought mental healthcare. At first, she received a range of incorrect diagnoses, but she and her mother eventually got their answer – however unexpected the truth was.
First, a doctor told Jessica that she had borderline personality disorder. This is an illness which causes shifts in a person’s mood – from, for instance, anger to depression to anxiety – which last for hours or days at a time. The disorder may also change a person’s behavior or self-image and spur impulsive actions, all of which can put strain on the sufferer’s relationships.
But within two weeks, another diagnosis came in for Jessica. This time, she was informed that she probably had bipolar II disorder. In cases of bipolar, a person experiences a cycle of moods that drop from high to low, before shooting back from low to high. With bipolar II, though, the mood shifts are less extreme.
A psychologist and a psychiatrist eventually sussed out the true cause of Jessica’s behaviors. As Tracey recalled, she and her daughter spent several hours responding to questions, while the mental health experts ticked boxes to build an assessment of Jessica. Eventually, they identified the 23-year-old’s symptoms as being suggestive of autism.
At first, Jessica took offense to the idea that she was on the spectrum, as she knew she could socialize and articulate her thoughts. However, her opinion began to change with further reflection. “The more I sort of thought about it… everything finally made sense,” Jessica said, according to her mother’s ABC News article.
Many of Jessica’s behaviors could, in fact, be traced back to autism, the Stewart family realized. For instance, Tracey said that Jessica had always reacted strongly to stimuli and that she experienced a sensory overload so intensely that it felt like physical pain. And little things could startle her, too.
Tracey went on to say that Jessica hated change-ups to her daily routine. She also regularly blurted out her bluntest thoughts at inappropriate times. “The way she doesn’t always understand the natural to-and-fro of conversation are all easily identified as part of an autistic life,” Tracey revealed.
Still, Jessica’s now-obvious symptoms hadn’t raised any eyebrows for more than two decades of her life. It may seem shocking that at 23 years of age she found out she was on the spectrum, but it’s actually not uncommon for autism to go undetected in young girls. Psychologist Ritu Campbell said it had to do with their ability to learn “social masking.”
Social masking may have girls rehearsing bits of conversation to prepare themselves for social interaction, or they might mimic their peers. They might keep one or two friends, but generally struggle in groups. And all the while, girls with autism potentially have no idea that other people tend not to partake in social masking.
Dr. Campbell said girls were particularly susceptible to social masking and thus able to hide their autism. This, she suggested, is because society encourages them to be affable and passive early on. And that may be one reason why more men and boys are known to be on the spectrum than women.
Social masking very well could have played a part in Jessica’s late diagnosis. She particularly identified with what Dr. Campbell said about the after-effects of such a practice. The psychologist said social maskers often feel beyond exhausted after a social gathering, since it takes them so much effort to get through such an event.
According to Tracey, “This strikes a chord with Jessica, who says she is constantly surprised at how exhausting socializing can be for her.” Unfortunately, Jessica would have a hard time overcoming such a sensation. After all, finding out that she was autistic was, in a manner of speaking, a confirmation that her life would have its challenges.
“I did actually get quite depressed [after learning I was autistic],” Jessica said. “It was sort of the realization that a lot of things I’ve been hoping to change were never going to change and I was always going to have a difficult life to some degree.”
Her mother also initially struggled with the news, because her daughter’s life had in the past been so difficult. “I have grieved for the person she may have been if she had received the support and assistance she needed at the time,” Tracey said. “I feel deep sadness for the complex confusion she has battled with and her exhausting efforts to be a chameleon.”
But the diagnosis did come with a positive twist. For one thing, Dr. Campbell revealed that while girls with autism proved difficult to pinpoint in the past, the healthcare industry continues to improve its diagnostic methods. And this step forward will surely change lives – for one, Jessica said it has changed hers.
“There is a growing body of research that refers to the lost generation of females who weren’t diagnosed with autism in their younger years,” Dr. Campbell told ABC News. “Really because the more typically male presentation was more readily recognized.” Although some women with autism have fallen through the cracks of the health system, knowledge is hopefully now on the up.
To that end, Dr. Campbell has had first-hand experience in diagnosing people with autism. It’s her specialty, and so she has seen how much of a difference that an accurate diagnosis can make. “My clients describe the process of being diagnosed with [autism spectrum disorder] as life-changing,” the psychologist said.
“Often [a diagnosis] helps explain [a person’s] life experiences and I guess it empowers them to appreciate their own neurological differences,” Dr. Campbell said. And in many cases, the same was true for her patients’ family members and friends, too. After all, these are people who may have previously felt confused by their loved one’s behavior.
“The personal insight helps them in not only developing self-compassion, but it helps their loved ones to understand them and their relationship with them as well,” Dr. Campbell went on to say. And the Stewarts could only agree with this assessment after learning the truth of Jessica’s condition.
“For us, the significance of the autism diagnosis cannot be understated,” Tracey said. Beyond understanding Jessica, the Stewart family were now able to get her the right treatment. The young woman received disability insurance and her family “[had] great hope that she [would] soon receive specialist help and support.”
Perhaps most importantly, Jessica was now in a position to finally find her footing. In fact, she actually grew to appreciate that her place was on the spectrum. “I definitely feel like that’s who I am,” she said. “I think completely different to other people and I kind of love that.”