Mom Receives Autism Diagnosis Along with Her 3 Children: 'It Was Life-Changing in a Good Way'
Jen Malia didn't have a name for what it was that made her feel different from her peers, but even as a young child, she knew it was something. She had difficulty communicating with other people, both children and adults outside of her close-knit family. "There was this small circle consisting of my parents, my brother, and a few others like my grandparents who I felt comfortable enough communicating with," she says.
That made her experience at school anything but easy. "I was always written off as the shy kid, but what was really going on inside my head was this feeling of being shut down, like I was incapable of communicating," recalls Malia. Having friends also didn't come naturally to her, but luckily, she was very close with her younger brother who took her under his wing and invited her to play with his friends.
But during these times of playing closely with her brother, she noticed even more differences that set her apart. Unlike her brother, who took his toys out of the box to play with, she kept them in mint condition, in a single-file line, and never played with them. "I used to line up all my toys, which I didn't know at the time was anything significant, but now people know it's one of the main indicators, or something that could indicate autism spectrum disorder (ASD)," she says.
More than 30 years later, Malia, now a mom of three, started noticing many of these same signs in her daughter, Holly, when she was about 18 months old. "This was the age when she started having what I now know to be autistic meltdowns—screaming and crying fits that went well beyond a tantrum that would be considered normal for that age," she says.
Holly's reactions were very different from other children her age who might get upset if a toy was taken away from them but calm down once that toy was given back. Holly wouldn't calm down even when an object was returned. "It was like the damage was already done and there was no foreseeable way for her to move past what had happened," says Malia. "Emotionally she couldn't regulate, so I took her to get tested for autism spectrum disorder."
The preliminary testing process was with a pediatrician who performed a Modified Checklist for Autism in Toddlers (M-CHAT) screening test on Holly. This screening is presented in a questionnaire that a parent fills out for their child. Although Malia checked off numerous things she had noticed about her daughter, the doctors didn't conclude her daughter was on the autism spectrum, "but were happy to refer her in case they were wrong," she says. Holly was referred to a developmental pediatrician who agreed that she had a language delay. "She had a small vocabulary for her age of about 30 words, which they attributed to language difficulties," says Malia, who still believed the issue was deeper than that.
Getting a Diagnosis
The Malias were referred to a clinical psychologist who would finally give the mom the answers she'd been looking for—not only for her daughter, but finally for herself. "I knew that there were some things that were more difficult for me, whether it was adjusting to changes in schedules or having trouble dealing with certain social situations or asking for accommodations at work," she says. "And I desperately wanted a name for whatever it was that made me different."
The psychologist explained that there were key differences between boys and girls when it came to showing symptoms of ASD. "Girls often go undiagnosed with ASD because they are better at masking many of the symptoms, such as acting out, and they tend to have better eye contact," says Malia. This made sense not only for her daughter, but for Malia. She also found out that if there's a history of ASD in the family, then medical practitioners are more comfortable making a diagnosis. "I wanted to make sure that I was on the record since I was sure I was," she says. "I figured that my diagnosis would help in the long run."
Once Malia received her diagnosis at 39, it became a lot easier for her to assess certain things that she had struggled with her whole life. "I was able to accept that reality and not just expect myself to be able to do them," she says. "It was life-changing, but in a good way because it gave me a way of understanding."
Malia then went through the testing process again for her two other kids. Her youngest, Nick, now 6, was diagnosed with ASD at age 2, just one year after Holly. Nick currently has applied behavior analysis (ABA) for nine to 12 hours a week and physical therapy. The latter, which he attends twice a week after school, is mainly for retained primitive reflexes and some muscle weakness. Her older daughter, Noelle, now 9, was diagnosed with ASD, attention-deficit/hyperactivity disorder (ADHD), and obsessive-compulsive disorder (OCD), but she hasn't needed therapy. Holly currently has occupational therapy twice a week after school, mainly for self-care and dysgraphia (disorder of written expression), as well as ABA therapy (also nine to 12 hours a week).
The mom is now a strong advocate for finding a diagnosis instead of merely settling for symptoms that don't sit right. And if you have a child who has autism, learning to accept it as a difference rather than feeling that something is wrong can go a long way, advises Malia.
"I present it to my children that they have differences with their brains, but it's not something that they should be ashamed of," she says. "I don't ever want my kids to be ashamed of their diagnosis—I want them to feel that it's part of their identity and that they wouldn't be the person they are without [having autism]."
Jen Malia's book, Too Sticky! Sensory Issues with Autism, a children's picture book about a little girl on the spectrum experiencing sensory issues, is available at book retailers.