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Young Woman Planning Future After Late Diagnosis of Autism

Meghan Rodo is like many 20-year-olds, leading a busy life with friends and her boyfriend, and planning for the day she can move out of her parents’ Reisterstown home and in with a roommate.

A few months away from her 21st birthday, Meghan is cherishing a sense of stability and freedom that she and her parents found elusive just a few years ago.

A long-sought diagnosis of autism at age 15 finally put pieces of a scattered puzzle together.

“Meg’s life had been one big research project,” said Nancy Rodo, Meghan’s

Finally knowing that she had autism, Meghan and her parents could focus on getting services and the right educational accommodations to help her succeed as she finished high school and transitioned into the adult world.

The young woman, who for years rarely spoke outside of her home, felt overwhelmed by the world around her, and acquired multiple complex diagnoses that provoked more questions instead of providing clarifying answers, now focuses on the joy she has in her life.

Bowling with her friends. Getting hot chocolate at Starbucks. Singing karaoke.

Meghan also shares her story in words and illustrations in a book she authored, “Are You a Girl with Autism? Me Too,” in the hopes of reaching other girls with autism, who may have had the same struggles or received late or misdiagnoses like she did.

*   *   *

Nancy Rodo started asking the difficult questions about her daughter early on.

When Meghan didn’t sit until 10 months, rolled instead of crawled, didn’t walk until 18 months, her pediatrician explained that she was at the “border” of the developmental range. But when she wasn’t putting two words together at 2 ½ and started receiving services for an expressive and receptive language delay, Nancy was direct.

“I asked them point blank, ‘Do you think she’s autistic?’ and they said no,” Nancy said.

Because Meghan made eye contact, wasn’t spinning or hand-flapping, and could hold a doll and feed it a bottle, the evaluators didn’t think she showed signs of autism, Nancy said.

Current research now suggests that diagnostic methods can overlook girls with autism because they don’t present the same behaviors as boys do. Overall, 1 in 68 children in the U.S. has been identified with autism spectrum disorder, according to the Centers for Disease Control and Prevention (CDC). However, autism is 4.5 times more commonly diagnosed among boys than girls. One in 42 boys has been identified as having autism, compared with 1 in 189 girls.

As the years progressed for Meghan, so did her diagnoses: social anxiety, selective mutism, auditory processing disorder, depression, among others, Nancy said. Her daughter received speech therapy, various medications, and plenty of testing, but none of the benefit of social skills groups that would have been more appropriate if she had the correct diagnosis all along.

Because she wasn’t having meltdowns or putting holes in walls—behaviors that doctors said were more typical autism behaviors—Nancy said her daughter received other labels instead.

“She just looked like a scared waif who was not social,” Nancy said.

When Meghan was 14, she opened up to her mom, crying. She had been bullied in school. She had tried medications. Nothing seemed to be working.

“I wish I had more friends and I could talk more,” Meghan recalled saying to her mom at the time. “I wasn’t taking any meds at the time.”

Nancy knew it was time to find a new doctor, one who could possibly make sense of why her daughter was so anxious and struggled to speak around others, one who wouldn’t just give her another medication in an attempt to correct what wasn’t completely understood.

*   *   *

The Rodos eventually found a practice that wasn’t far from home and one that took their insurance. The family took Meghan’s three-inch-thick medical file and their hope to the new specialist.

“She reviewed the file, and then observed her a little bit, and talked a lot with me, and just real gently said, ‘I think it’s always been autism,’” Nancy said.

Meghan was almost 16.

The doctor then sent the Rodos to the Kennedy Krieger Institute to receive a secondary diagnosis as confirmation. The doctor there agreed with most of the assessment, but questioned that Meghan didn’t fit all of the criteria.

Nancy insisted on going through the diagnostic criteria point by point to explain her daughter’s entire history, not just what she was currently presenting.

The doctor wanted to know why Nancy was so insistent about getting this diagnosis.

“I said, ‘Because she’s always had autism–we had been running around for years trying to get this diagnosis, unaware of it, now her current doctor feels that’s what it is, so I don’t want to fool around anymore. Because these are those crucial transition years to apply for everything that’s going to help her for the rest of her life,’” Nancy said she explained to the doctor.

After reviewing Meghan’s file outside of the consultation room, the doctor came back and gave the Rodos the news they had waited years for.

“She said, ‘It’s autism. I’ll write a letter stating that.’ So that letter’s gold,” Nancy said.

Recalling the day, Nancy turned to Meghan and said: “You were actually happy because you said, ‘Now it finally fits. It makes sense.’”

*   *   *

As happy and relieved as the family was to get much-needed answers, the work of now getting the proper treatments and services had to begin.

“Once we got the diagnosis, then it was like an avalanche for the next year of even more appointments and assessments,” Nancy said.

Occupational therapy, social skills group speech therapy, and other social skills groups helped fill in the gaps that Meghan had been missing to help encourage her to speak and make new friends.

Her mother had started homeschooling her in the middle of 8th grade, and continued through high school. But she could get the specialized services she needed at the local high school and enjoyed going there.

“I met a lot of kids who were like me,” Meghan said.

As Meghan, who was still mostly nonverbal at that point, adjusted to her life with her diagnosis and new activities, Nancy suggested that she start writing and drawing about how she was feeling. It was out of this that Meghan’s book, “Are You a Girl with Autism? Me Too,” came together.

“And being in high school, I was always trying to for creative ways to meet English requirements,” Nancy said. “So she started to write. I would give her a topic: write about OT, write about how the [new weighted] blanket feels.”

Nancy, who had learned through her own research that girls with autism often received late diagnoses or were never diagnosed at all, asked Meghan if she would like to make her experience into a book.

“So then it became my mission, once Meghan started writing and creating and making it work that this could really help educate people,” Nancy said.

Since the book was published in 2014, more than 200 copies have been sold to professors, school counselors, parents, teachers, and autism agencies. It’s also available on Amazon, and when Meghan sells them at events such as the local Honestly Autism Day.

*   *   *

Meghan will officially complete her transitional period, or what is known as the “gap years,” this summer after she turns 21. This is when young adults are no longer eligible to receive services as part of the state educational system and must apply instead to receive services through state agencies that serve adults with disabilities.

The Rodos started working on this crucial period when Meghan completed high school and turned 18, applying for a spot in a selective agency in the Baltimore area called Itineris.

In July, Meghan will start attending Itineris daily and will learn employment and life skills to help her to live and work independently.

Meghan knows that what has been easy for her may change as she’s ready to get a job and become more independent, and understands that a place like Itineris can prepare her for the expectations of adulthood.

“Your disorder will change,” Meghan said. “Some things will get harder, some things will get easier.”

In the meantime, Meghan has already taken courses with the Single Step program at the Community College of Baltimore County, and completed an administrative assistant program with Penn Foster Career School online. She can type 50 words per minute, a skill she’s proud of and hopes to use in a future job.

She’s also active in several social groups, including Best Buddies at Stevenson University, Young Life Capernaum in Westminster, the Hussman Center at Towson University, and Disability Express, where she met her boyfriend of several years, Brian Nobles.

As Meghan and her mom talked about when Meghan may be ready to move into an apartment with a roommate, Meghan said, yes, that’s what she wanted. Nancy wondered out loud if some more planning should be done.

Then Nancy mentioned that Meghan and Brian have talked about getting married. Meghan blushed and looked down, smiling.

“Maybe that can be the roommate,” Nancy said, laughing.

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