Middletown woman diagnosed with autism no longer meets criteria for the disorder

MIDDLETOWN – The memories of Sara Deuidicibus's toddler years come in bits and pieces. She remembers people sitting with her for hours, sometimes getting her to verbalize words, others teaching her to tie her shoes.

Those memories are of therapy sessions her parents put her in after her diagnosis of autism at 11 months old.

Sara, who did not speak until she was 3, is now a senior studying mechanical engineering at Stevens Institute of Technology and she no longer meets the criteria for an autism diagnosis.

She said those early therapies made a huge difference in her life, working with her disability.

"Even if nothing changed, I still would have had a great life," she said, "It’s just, it’s definitely easier that I’m able to talk, able to do these things."

Her self-published book titled "Ends on the Positive Ones" complies a decade of poems about her adolescent years.

"Everyone has struggles, everyone has challenges, my biggest thing is that you can always find ways to make your life the best it can possibly be," Sara said about coming to terms with her disabilities.

Autism

“Autism is a very complex phenomenon,” Dr. Elizabeth Torres, who leads Rutgers’s Sensory Motor Integration Lab, said. In the past few decades, the science has improved so that children can get diagnosed earlier and start therapies as soon as possible.

She said clinicians do not need to wait until children are having issues interacting socially or communicating, allowing a window of opportunity before neural networks become set in their place.

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Most people diagnosed with autism will still meet the criteria for an autism diagnosis later in life. But, as autism is a broad spectrum, Dr. Torres said it is possible for certain people to later fall into the “normative data of how people interact.”

In the past decade, researchers have found people who no longer meet the criteria for an autism diagnosis later in life.

An article published in the February edition of the Journal of Child Psychology and Psychiatry, synthesized a list of studies that have looked into children who no longer met the diagnosis criteria for autism later in life.

The authors, University of Connecticut professors Inge-Marie Eigsti and Deborah Fein and Postdoctoral Fellow Caroline Larson, proposed the term "loss of autism diagnosis" or LAD to define what has been termed "optimal outcome," "very positive outcome" or "recovery," among others.

Some of the studies have found that as many as 9% of all participants no longer meeting the criteria for an autism diagnosis. The studies debate what qualifies as loss of an autism diagnosis.

Dr. Torres stressed that the main shift in perception should come from the wider society that needs to become more accepting of people with disabilities rather than the people with disabilities themselves.

The Early Years

When Sara was born, her mother Dina knew something was not right. If Sara was not sleeping, she had two modes: crying or silence.

“You could not engage her. She did not smile. She did not laugh. She did not babble. She was completely silent,” Dina said. “She did not look at you, she looked through you. Everything bothered her … smells, sounds, light, odors.”

Dina said starting at 8 months, she was asking her developmental pediatrician about an autism diagnosis.

At a doctor’s visit for her brother Spencer, Sara screamed and cried for about an hour straight. And that was when she was formally diagnosed with autism.

Dina was better positioned than many when she gave birth to Sara. She had moved down to Middletown from New York City with her husband Joe. She worked in textile design; he worked in the music industry. While they struggled with fertility issues, Dina became acquainted with a neighbor who had a son with autism. She had seen the doctor’s visits and learned what therapies worked for her neighbor’s son.

Then they gave birth to a son Spencer in their mid-30s. Spencer was a happy, giggling baby who was developing well with the exception of speech development. At 18 months, his behavior changed. He would flap his hands and limit his eating among other things.

“At that point I knew it wasn’t just speech, it was autism,” Dina said.

During that time, Dina became pregnant with Sara. Prenatal tests indicated that Sara would be born with Down Syndrome, which did not turn out to be the case.

“Well as long as she’s not going to be in pain,” Dina remembered thinking. “We’ll deal with it.”

Having seen the process for working with babies with developmental disabilities and having a heads up, Dina and her husband were prepared.

“I kind of mourned the children and the experiences and what I thought I was going to have for their life and mine. And then I had my little pity party and then the next morning I woke up and I said now what do we need to do,” she said.

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Dina said the philosophy her husband and her embraced was not to set about curing their children’s autism, but to raise them to reach their full potential.

“Don’t look at what you can’t or what you think is not possible,” Dina said. “Just say I’m going to do the best I can so they can be the best that they can be. And you would do that even with a neurotypical kid. They’re really not that much different. They just need different support.”

That support meant getting diagnoses from a developmental pediatrician and, crucially, a prescription for the therapies needed for her children. For Sara, that meant 40 hours per week of applied behavioral analysis or ABA therapy, three hours a week of sensory integration occupational therapy, speech therapy and social skills group, according to a letter from their doctor Cecelia McCarton with the McCarton Center for Developmental Pediatrics.

The early intervention program that was offered did not cover all of the therapies and she described the school’s program as being akin to babysitting. So, Dina and her husband hired a program coordinator, who hired and trained other specialists. They taught themselves what the therapies entailed and engaged with it themselves.

After Joe lost his job, they concentrated on raising their infants full-time.

“The thing is, it’s not just 40 hours a week plus additional. It’s 24/7,” Dina said.

After the kids were put to sleep, Dina and their program coordinator would look over the data collected from that day and change the next day’s therapies based on what they had learned. Some days they would work past midnight.

To pay for everything, they refinanced their house, took out lines of credit and sued the school district, resulting in a settlement out of court for a stipend of about $30,000-35,000 per school year per child. Dina estimates that in total, they had spent about $500,000 in four years.

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But then at age 3, Sara began to speak.

“She wouldn’t speak. She wouldn’t look at you,” Dina described the first few years. “And then all of a sudden, she would say, ‘Mom I want this.’”

At age 4, Sara no longer met the criteria for an autism diagnosis, her brother also followed.

Dina said, “You’re not cured of autism, you just don’t meet the criteria to be diagnosed.”

She said Sara’s brain still works in similar ways as when she was a child. Like her spoken language going from nonverbal to full sentences rapidly, when she learns new subjects, Dina said it can go from not understanding the subject at all to sudden full comprehension.

Reading from Dr. McCarton's letter, Dina said other accompanying developmental problems may arise later in life that are separate from an autism diagnosis.

Growing up

In Sara’s case, she was subsequently diagnosed with OCD, anxiety and Tourette's syndrome.

Her subsequent diagnoses manifested themselves as counting everything, fears of getting sick from going outside and making screeching sounds that she couldn’t stop.

“As I got a little bit older, I started realizing. This is just a part of me,” Sara said.

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She began integrating her disabilities into her life. Counting resulted in goal setting for basketball practice and fear of the outside world turned into a class ranking of fourth out of 350 students at Middletown High School North. Sara said she’s come the learn the rhythm of her disabilities. Her tics would come out more when stressed or tired.

But growing up, she felt periods of loneliness. In a poem titled “Grain After Grain” that was written in high school, she describes the feeling of giving and giving to others without the gesture being reciprocated.

“It’s acknowledging that even if you feel lonely, … you can think ahead,” Sara said. “It’s very possible you’ll meet people; you won’t feel that way anymore.”

For Sara it took moving away to college to make the close friends she currently has.

"For her to ... end up where she is today. It’s mindboggling," Dina said. "She does speeches in front of thousands of people. She does poetry in front of the Count Basie Theatre."

Sara's brother Spencer graduated from Stevens Institute of Technology this year in an accelerated program receiving both a bachelors and master's degree. Sara will follow in her brother's footsteps with the same accelerated program.

Dina said the issue with autism is that many people assume it’s static and a diagnosis is an end all be all. Some parents will wait because they do not know what to do, where to go or they are in denial, viewing a diagnosis negatively. Other parents will not have the resources to spend on all the therapies needed.

A wishlist for autism research

Dr. Torres said there are many changes that need to occur.

Coming from a background in applied math, she hopes for more federal funding to bring people from the STEM field into the study of autism. She hopes that a standard can be developed so clinicians in two different states can come up with the same diagnosis. And she said the innovators in the engineering field are the ones who have the knowledge to design new technology for autism research or detection.

She said early intervention programs are key, but she found that many operate under a one-size-fits-all model that does not consider the “the nuances in the behavior.”

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She recommends that parents find a good clinician that is willing to work with the child on a one-to-one basis that would tailor the therapies to the child’s needs. She said the goal in the early stages, should be to “support the baby and encourage exploration” and not “to make the baby look as respected or normal as you can get.”

“Think yourself what it would be like to be constantly in freefall or not having an anchor to the world or not having the ability to know that your hand is about to move in a certain way or your feet are walking in a certain way,” she said describing motor coordination issues that many people with autism have. “It’s sort of a state of disarray in the system that is difficult to explain because we don’t have it and we take for granted a lot of what we sense. … These children don’t have it.”

Olivia Liu is a reporter covering transportation, Red Bank and western Monmouth County. She can be reached at oliu@gannett.com.

This article originally appeared on Asbury Park Press: Middletown native 'grows out' of autism diagnosis