SEATTLE -- Autism spectrum disorder affects 1 in 68 children in the United States. The number is five times higher in boys than girls.
For many families, the challenge of putting the puzzle pieces together starts right away trying to get a diagnosis.
Wait lists can be several months to a couple of years long. Doctors and researchers say the earlier a diagnosis can happen, the earlier intervention can begin, which is critical to child development.
Six-year-old Aurelia Drake has 30 hours of weekly in-home therapy.
Her sessions include academics, breathing exercises, checking in on feelings and free play among other things.
She quickly completes the math exercises in her workbook. Math comes easy for Aurelia, but figuring out life with Asperger’s doesn’t come with a formula.
“It’s such an isolating experience. You can’t relate to other families around you, and they can’t relate to you,” said Aurelia’s mother, Lucine Drake.
The Drakes say since Aurelia is the oldest of their four kids, there wasn’t a sibling to compare her behavior to, but Lucine says she had a hunch something wasn’t adding up.
“I didn’t connect with her, the way I was expecting to connect to my child,” said Lucine.
She says Aurelia met all her pediatric milestones in infancy, but shortly after her first birthday, signs started to point to something, Aurelia didn’t respond to her name, speak or make eye contact with her parents. Lucine turned to her own mother for answers.
“I asked my mother because she had two kids, she worked in day care and I thought she would have an idea of what could be going on. Her response was ‘No she’s exactly like you when you were a kid,’ and I thought well than she’s fine,” said Lucine.
Fast forward a couple of years to preschool, Lucine visits Aurelia’s class and suddenly notices other children are able to hold conversations with her, something Lucine had never experienced with her own daughter.
The Drakes say Aurelia had limited speech as a toddler, it was functional but not expressive.
“If it was breakfast time and we were asking her if she wants more bacon, she would just say ‘bacon’. That was her only form of communications, repeating words,” said Lucine.
She says that type of communication is common for kids on the spectrum. It’s known as echolalia.
The Drakes say from infancy to about three years old, Aurelia’s behaviors were becoming more extreme.
“Her second year of preschool her teacher finally saw what I saw and I needed that one other person to see what I saw to convince me to get the evaluation, but that’s now one of my biggest regrets that I didn’t follow my hunch,” said Lucine.
The Drakes made an appointment quickly with a specialist. Aurelia was diagnosed with sensory processing disorder, a common component to autism, but seeing a specialist who could evaluate for autism was far more difficult, each agency had a wait list between a few months to a couple of years long.
“I scheduled with every single agency, which meant a 30-plus page application for every single one. That became my full-time job to pursue this evaluation” said Lucine.
“It shouldn’t be this hard,” said Brian Drake, Aurelia’s father.
The Drakes went in for Aurelia’s evaluation half a year after scheduling it.
Lucine says even though she always had a hunch it might be autism, getting the diagnosis was tough.
“I was broken about it. It destroyed me. The only thing I knew about autism when we got her diagnosis was the movie Rain Man.
"I thought of what would her future look like, that she would never be able to engage with people, she would never be able to develop relationships, we would never be able to develop a connection with her. She may never be able to be independent as an adult.” said Lucine about her initial thoughts following the diagnosis.
The Drakes say those months following the diagnosis was a dark time for their family.
“We were starting from ground zero,” said Lucine.
The Drakes were trying to understand the diagnosis, what kind of therapy Aurelia would need, the financial cost of it, all while raising twins and a 6-month-old.
“I’m not sure there is a word for it,” said Brian Drake of the chaos during those months.
Aurelia was diagnosed with Asperger’s, now more commonly known as Stage One on the autism spectrum.
“We were fortunate to get a diagnosis with her because so many girls get missed. They look different than boys,” said Lucine.
She’s highly functional, excels in academics, especially reading, but social life can be challenging if it deviates from her routine.
“She has a vision in her mind of how things are going to go. She has a routine to her life and if things stray from that routine, she has a meltdown,” said Lucine.
The Drakes say they would avoid going to the park or the grocery store because they didn’t know what kind of behaviors Aurelia may exhibit.
“She didn’t understand the concept of personal space. She would get really close to somebody and speak really loudly at them. We’d teach her a script on how to say ‘hi, how are you,’ but she didn’t know how to respond if it turned into a conversation,” said Lucine.
After Aurelia’s diagnosis, Lucine thought of what her own mother shared with her, that she was just like Aurelia when she was little.
“I decided to find out for myself and got an evaluation and found out that I’m also on the spectrum,” said Lucine, who was diagnosed with Asperger’s about a year after Aurelia received her diagnosis.
She says if Aurelia didn’t get her diagnosis, she would have never found out about her own autism.
“What I thought was one of the worst moments in my life, that I’ll never have a connection with my child, she’s actually the one I connect with,” said Lucine.
Lucine says looking back on her life, she can see how Asperger’s played a role.
“I remember hiding from people. I wouldn’t play with the other kids,” said Lucine. “I just wanted to read books."
Despite her own Asperger’s, Lucine says she found her crowd and had a lot of success in life.
She studied cognitive and behavioral neuroscience at Bryn Mawr College and at Oxford University, and has spent her career in marketing and project management. She says even though she’s accomplished a lot, she had challenges along the way, like navigating the social politics of the workplace.
Lucine says as Aurelia has gotten older, she sees more and more of the behaviors that she had as a child in her own daughter.
“I’m proud of being autistic and I wanted her to feel that, too,” said Lucine.
“If it was possible for mom to cope and move through the world without therapy or a diagnosis and here we’ve captured this when Aurelia was 3 years old, we’ve got the perfect perspective from mom on walking this path,” said Brian.
Brian says with the early intervention of therapy, he has been able to see the personality of Aurelia emerge.
“What I’ve experienced as a dad watching my daughter grow up is that she’s definitely different, she has quirks in some areas but she also has these other capacities that are beautiful and what I call superpowers,” said Brian.
Those superpowers, he says, include her compassion for other people along with her ability to read novels by the age of four.
The Drakes say Aurelia is highly gifted academically.
Today, life on the spectrum for this family has more ups than downs.
“That future that I thought had vaporized, every opportunity is still available to her,” said Lucine.
Sometimes the puzzle pieces of autism take a while to put together, “Don’t lose hope, and if you do, don’t beat yourself up about it. It’s still there for the taking,” said Lucine.
Sometimes, when those missing pieces do come together, they reveal the beauty of the picture that’s been right in front all along.
Lucine quit her job as a regional marketing manager and says she is devoting the rest of her life to create a better world for children on the autism spectrum. For her, it meant building a school where her daughter and other children on the spectrum can be challenged academically while getting the therapy and life skills they need.
Lumen Academy opens this fall. It is a private school for children on the spectrum with one-on-one educational model that incorporates behavioral therapy within the school day.
The Drakes say they had a number of challenges when Aurelia went to public school.
“We got her an IEP through the school district. We tried public school first and their recommendation when she was 4 years old was that she would go to a special classroom, away from her peers, that she would be segregated in a room with all sorts of other kids in the spectrum. That was unacceptable to me, because I knew she was bright! I knew she deserved academics that would be challenging and stimulating for her. It seemed wrong that in this day and age we’re still segregating a portion of the population at this early age, and in an education setting,”
Lucine said she thought of homeschooling Aurelia, but decided that building Lumen’s academy could help not only Aurelia but other children like her.