Feeling Blue / Misdiagnosed, misunderstood or missed all together, many moms are finding out now that they might be on the spectrum
Jennifer Day stormed out of the Subway shop in tears, sans a sandwich, calling the guy behind the counter an idiot and telling the employee that he had ruined her lunch by slicing the bread from the side rather than the old-style V-shape that Day preferred, which made a kind of doughy trench for the fixings to sit in.
“Food has to be perfect; I don’t deal with change well,” admits the 43-year-old Hurst mom of two. But her outburst, which took place several years ago, wasn’t the result of a short temper or even the culmination of a bad day. It was an example of one of her on-the-spectrum meltdowns, she says.
Day’s never been officially diagnosed with any form of autism spectrum disorder, but she’s pretty sure she’s somewhere on the high functioning end of the spectrum.
It was when Day was doing research on her now 5-year-old son’s severe autism diagnosis that she came across a checklist of girls with Asperger’s syndrome traits. Reading about the condition marked by egocentricity, communication difficulties, repetitive, inflexible patterns of behavior, sensory sensitivities and especially the not being aware of social missteps and not wearing makeup, “I just kept thinking, that’s me,” Day says.
She’s not alone. A growing pool of Dallas-Fort Worth area women who grew up with undiagnosed autism and Asperger’s syndrome are coming to light as they research their children’s spectrum disorders and recognize themselves in their findings.
Putting a number on the increasing phenomenon is impossible because many women, like Day, don’t ever receive a formal diagnosis (more on that later), but Dr. Stuart Robinson, a clinical neuropsychologist who runs Live More Simply, Inc. in Dallas and specializes in testing, diagnosing and treating adults with Asperger’s, says that at least 50 percent of his practice consists of moms like this, who didn’t identify that they may be on the spectrum until adulthood. “And continued research shows that women are still being significantly underdiagnosed,” he says. (Asperger’s syndrome was removed from the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in 2013, but there are doctors and therapists, including Robinson, who specialize in diagnosing and treating the high-functioning condition in the Dallas-Fort Worth area.)
That’s likely because autism is at least three times more common in boys than in girls, so scientists routinely include only boys in their studies; girls are often overlooked. And 20 to 30 years ago, autism awareness and the diagnosis rate wasn’t where it is today, says Erica Sewell, a licensed clinical social worker, registered play therapist and certified autism specialist at Full Circle Counseling and Family Services in Dallas. It was rare to find a girl on the spectrum.
Even now if you Google “autism” and “mom,” what you get are pages upon pages of resources, articles and studies for mothers of autistic children — there’s actually very little about mothers on the spectrum, and you really have to dig to find it.
“These women were often misdiagnosed as children with inattentive attention deficit disorder, obsessive-compulsive disorder or bi-polar disorder,” Robinson says. Or generalized anxiety disorder or an eating disorder or Tourette’s or borderline personality disorder. Some women have gone through life accumulating and being treated for an alphabet soup of diagnoses. “Their symptoms weren’t taken seriously.”
And parents, like Leah Israel’s mom and dad, accepted their daughters’ social anxiety as a quirk in her personality.
“But my anxiety was extreme,” explains the 43-year-old Highland Village mother of one, who was diagnosed with Asperger’s two years ago. “As a child, I wouldn’t talk for myself. Even at a relative’s home, I would ask my mom to ask my aunt if I needed something.”
Social anxiety is just one common denominator among these moms. Most of them also admit to inappropriate social interactions such as hurting someone’s feelings and being completely oblivious to it; challenges with nonverbal communication like misunderstanding facial expressions, tones and gestures; and difficulty connecting with other women.
As girls, these women started mimicking acceptable behaviors because they were scolded by parents and teachers for not looking someone in the eye, for instance. So along the way, these girls often used coping mechanisms and made behavior adjustments to effectively camouflage their uneasiness and social awkwardness.
“Women can learn the script for acceptable communication and interactions, and from the outside, appear to fit right in,” explains Dr. Elizabeth Oriola-Otenaike, a psychologist in Fort Worth, who works with people on the spectrum, including moms. But inside, the semi-normalcy these women struggle to maintain is just a façade masking a real inner struggle.
So what does it mean for them as parents? All moms face challenges when it comes to parenting and moms of special needs children struggle with additional issues, but what’s it like to parent a child on the spectrum when you too are on the spectrum? For most of these moms, the social struggles typically dominate.
“I know I don’t support my kids in their social endeavors the way I should,” admits Carrie Stephen (name changed for privacy), a 39-year-old mom on the spectrum (though not officially diagnosed) raising four boys (three are on the spectrum) in Flower Mound. “Something social for them means something social for me, and that scares me so I avoid it.”
The socialization of a child is one of those traditional parenting tasks, but to a mom on the spectrum, everything from arranging a playdate for a toddler to communicating with the kids’ teachers can prove daunting, and there’s a fear that the lack of social skills might have a ripple effect on the kids.
Kelly Donaldson, whose name has been changed for privacy, is a 46-year-old Aubrey mom of three, who has not been formally diagnosed. But she doesn’t like being around new people. “I get shaky and nauseous, almost hysterical inside, and then when I’m actually in the conversation, I obsess over every word. I think, ‘Am I talking too much? Am I talking about myself too much? What should I be doing differently?’” The conversation moves on while Donaldson continues the dialogue in her head, then she’s labeled as rude or stupid for not being more engaged.
She also homeschools her kids and rarely leaves the house because of it. “And I know it’s detrimental to them socially,” she says.
Avoiding birthday parties where parents are expected to stay or places where parents gather and chat while the kids play “can, to some extent, affect a child’s social development because it can limit their socialization opportunities,” Sewell says.
Instead of evading social encounters, some moms, like Israel, attempt to fake it day after day. “Every afternoon when I pick up my son from school, I chat with other moms,” she says. “If there are just a few moms, I don’t know when to shut up, lots of moms, and I don’t say a thing because I don’t know when it’s appropriate to interject. The whole time I’m counting down the seconds until I’m home.”
Years of practice help her blend in with other moms. No one knows how much harder she’s working to do something that seems simple such as making small talk.
“Women with Asperger’s don’t have a brain wired for chitchat,” Robinson explains. “They think deliberately and slowly. They tend to get lost when a conversation jumps from topic to topic.”
Another struggle? Sensory sensitivities, which don’t disappear when a woman on the spectrum becomes a mother. In fact, what a neurotypical mom might perceive as an annoyance — bright lights, offensive smells or loud noises like a colicky baby — can feel like an assault to a mom on the spectrum.
“Grant’s constant screaming and crying completely overwhelmed me,” says Day, remembering the months after her oldest neurotypical son was born. “I would just shut down. I’d drive home from taking him to the doctor and I was unable to get out of the car. I literally had to talk myself through every step, ‘Take your hands off the wheel, Jennifer…’”
Nurturing can also prove to be difficult for moms on the spectrum. “Constant touching, rocking, holding and snuggling that kids often need can be enough to send some moms on the spectrum into sensory overload,” Oriola-Otenaike says.
And sometimes a child’s sensory-seeking activities trigger Mom’s sensory sensitivities, making it challenging to balance everyone’s needs.
But it’s not all bad. Moms on the spectrum thrive in other ways. These moms are able to put words to things their children don’t understand, to help their kids figure out sensory issues that bother them and help them find solutions and prevent escalations in their behavior.
“I am empathetic,” Donaldson says. “When one of my boys feels misunderstood, they know I understand. I know exactly how they feel and therefore can offer comfort in a way that a typical mom can’t with her autistic children.”
Moms on the spectrum also tend to be conscientious, caring and structured. “In my experience these women are fantastic moms,” Robinson reveals.
Stephen prides herself on always keeping her house full of boys in order. “We have a very specific routine we follow daily,” she explains. “It’s structured for my four boys — and for me.”
But what most of these moms on the spectrum say they sadly lack is any real support.
“I feel lonely all the time,” Donaldson laments. “Even in groups with other moms with autistic children, I feel like no one gets me. They don’t know what’s happening in my skin, so I put up a front and become someone else because I worry that if I let them see what’s really inside, people won’t like me. I’m not even real with my husband.”
Alienated, depressed, lonely and inadequate are all words women used to describe what day-to-day life is like as a mom on the spectrum.
Parenthood is rarely mentioned in discussions of independent living skills that autistic kids should have when they age out of the educational system. There’s a plan for college for work, maybe even for a relationship, but parenting is a topic that’s overlooked.
But autistic parents exist. And the population of autistic moms grows but remains largely invisible when it comes to spectrum-related supports. There are lots of services for parents of autistic children (just look in our directory on page TK) and even autistic adults living with their parents, but autistic parents are mostly left out of the landscape.
Robinson advises moms who suspect they may have Asperger’s to find a professional who has experience diagnosing and treating adults with Asperger’s, not just children. “Find someone who specializes in treating adults (more than just one or two patients) and seek counseling from them,” he says.
Many moms never take this first step because someone along the way told them (or they read) that if their spectrum disorder doesn’t affect their adult life, then why bother getting it diagnosed? But clearly, it affects them.
“With very little counseling, these moms could minimize the anxiety and with a little bit of autism education, they can even begin to appreciate the benefits of having a brain wired differently,” Robinson explains. “Women with Asperger’s can become comfortable with being different.”
Plus, once you become aware that you are on the spectrum, “Moms can really benefit from parent coaching and developing coping skills to help them through everyday challenges,” Sewell notes.
Another tip? Find a mentor. McKinney mom Faith Wilson’s son is autistic — and she’s certain that she is too, to a lesser degree. Wilson, 37, admits that her mother was never the best role model. “She solved any issue or meltdown with a spanking,” Wilson says. So through church, Wilson found and befriended Barbara, who was diagnosed with Asperger’s several years ago. “She’s taught me about the importance of using social stories and given me the tools to be socially appropriate because I can be like a bull in a china cabinet.”
These moms have seen the tremendous strides their children have made with therapies and treatments, experts urge moms on the spectrum to follow their children’s lead. Therapies can work for Mom too.
Israel says she knows she would be a very different person had she had occupational therapy as a child. “My fears have always limited me,” she reflects. “I never climbed a tree, and my husband taught me to ride a bike in my 30s. My son is already so much braver than I think I’ll ever be, and I credit his therapies.”
Getting diagnosed gives some moms a sense of relief, Oriola-Otenaike says. “It helps moms understand that they’re not broken. Their brains are wired differently, giving them different strengths and different areas they need to grow.” A diagnosis basically provides a very useful starting point.
From there, experts suggest joining a support group (see a list on page TK) or seeking a small group of friends where you can share, feel accepted and relate to others.
Israel found that place. She says she has a couple of close friends that she sheds her mask for, “where I can be myself, more blue.”
Day is still looking for that group.
“I just want moms like me to feel less alone,” Day says. “I feel so much guilt. I’m working against it, but it takes time. I hope that other moms on the spectrum reading this realize that they aren’t alone.”