When parents receive a diagnosis of autism for their child, the news may seem overwhelming and the future uncertain. But it’s important to know what life can look when kids with autism have access to timely, comprehensive diagnostic and intervention services that can allow them to reach their full potential.
Daniel Pollack, 18, is an example of how well things can turn out. This past June, Daniel, who was diagnosed with autism more than 15 years ago, graduated from Fairfield Ludlowe High School in Fairfield, Conn. He is studying marine biology at Eckerd College in St. Petersburg, Fla. Though his story isn’t necessarily typical, it’s also not as rare as you might think, says his mother, Maria Diaz.
Experts say that helping children with autism achieve their full potential depends on many factors: access to educational resources, understanding what the child’s needs are and the best ways to address them—and parental involvement.
“Kids like Danny can grow up and be anything they want to be,” Diaz says. “Advocating for your child is not something you can leave for everybody else to take care of.”
Diaz says that recommendations from the Yale Child Study Center, where Daniel was first seen at the age of 2½, paved the way for her son’s success, in part by equipping her to be a strong advocate for his needs. “You need to be involved and sometimes, push for things,” she says. “I didn’t used to be this pushy, but I knew my son needed these supports. A diagnosis is not a sentence; it’s a challenge.”
After her son was accepted into every college he applied to, Diaz emailed Katarzyna Chawarska, PhD, director of the Child Study Center’s NIH Autism Center of Excellence. She thanked Chawarska for listening to their concerns and helping them understand his needs. Early diagnosis and recommendations for intervention tailored specifically to Danny have been key to his success.
“I remember Danny well, and when his mother sent me an email, I was deeply touched and I shared it with the rest of the team here,” Chawarska says. “There were tears of joy. We care deeply about the kids we work with. It was very kind of his mother to reach out and let us know how life unfolded for Danny. We are always delighted to hear how the kids we first met as toddlers are doing later on.”
Daniel’s story, Chawarska says, is an important one for families to hear. “Even if a child has significant challenges early on, as it was in Danny’s case, early detection, diagnosis, treatment, follow-up care, and parental involvement are all crucial,” she says.
A diagnosis of autism
Autism, which is also known as autism spectrum disorder (ASD), is a developmental condition that interferes with a child’s ability to communicate and interact with others, and also affects learning and behavior. Signs of ASD begin early in childhood and typically last throughout a person’s life. Some people with autism face significant social, communication, and behavioral challenges; others experience few.
Daniel came to Yale for his evaluation in 2005. (The Child Study Center started the first autism clinic for kids under age 3 in 2000.)
“Before that, children typically were not diagnosed until they were 4 or 5 and about to go into school,” Chawarska says.
Diaz says she started to notice things that were different about Daniel, her second son, when he was about 1½ years old.
Repetitive behaviors and a change in Daniel’s interactions with his mother were early signs. “He started spinning the wheels on his little plastic cars all the time and would run around our rectangular dining table over and over again,” says Diaz, who is an engineer at Sikorsky Aircraft Corp. in Stratford. “When I would look at him, there wasn’t the same connection we had when he was a baby. It was as though he was looking through me.”
When Diaz raised her concerns with others, she was often told she was overreacting, she says. “I remember talking to his pediatrician about it at his 18-month appointment, and the doctor said to wait and see when he’s 2, because boys develop a little later,” Diaz says. “At his 2-year appointment, I walked in and said, ‘I’m not waiting anymore.’ I wished that I had been more proactive at the last visit.”
The pediatrician referred the family to the state’s Birth to Three System, which offers early intervention services for infants and toddlers with developmental and health-related needs.
“A case manager came to our house and evaluated Danny,” she recalls, noting that she was told he would benefit from specialized support and that evaluation by the Child Study Center would be helpful when Danny started school. Around this time, the family moved to Fairfield, which, she says, has excellent services for kids with special needs. Though Daniel was put on the waiting list for an appointment at the Child Study Center, a slot opened within a few months.
“There was a team of people who met us, and they explained how they were going to study Danny’s eye tracking and also do some play assessment,” Diaz says. “I remember feeling very comfortable with all of it.”
As part of his research visit, Daniel also underwent a comprehensive evaluation of his social, cognitive, language, and adaptive skills. The evaluation, which took place over two separate morning visits, is still done the same way today as it was when Daniel came in.
“We developed this evaluation protocol over the years and have found that it’s effective and reliable,” Chawarska says, adding that each child is seen by several experts on different days. “Some of us work with the child directly and others work with the parents to learn how the child behaves at home. Our mission is not just to look for symptoms of autism, but to understand the entire child.”
Why early intervention matters
The benefits of early diagnosis are many, Chawarska says. “Children have tremendous brain plasticity. A comprehensive evaluation can help identify the child’s unique aptitudes and interests, which can then be harnessed in their intervention programs to address their needs and vulnerabilities. The ultimate goal is to ensure that each child with autism reaches their full potential,” she says.
A diagnosis of autism may also come as a relief to some parents. “If a baby is having trouble reaching developmental milestones and connecting with others, the whole family system is affected,” says Chawarska. “Parents are worried and they become disheartened when no one acknowledges their concerns. Instead of hearing, ‘Yes, you might be right, let’s take a closer look,’ they often hear, ‘Don’t worry. Boys talk late. Let’s check in another six months, or in another year.’”
Plus, early diagnosis may prevent future issues, Chawarska says. “If the primary social and communication difficulties are not addressed early, we may start to see secondary issues including behavior problems,” she says. For instance, a child who does not have an opportunity to learn to communicate through sounds, gestures, or words, might start communicating their needs through tantrums.
Mike Pollack, Daniel’s father, agrees that it was a nerve-wracking time. “We weren’t really sure what was going on. You are waiting for words to come out of your child’s mouth—and we heard a few words—but then they disappeared before he was 2,” says Pollack, who is also an engineer at Sikorsky. (The couple is now divorced.)
Diagnosis brings access to help
When the Yale team diagnosed Daniel with autism, they provided a report summarizing their findings and recommendations for treatment. This, says Chawarska, is where a different future begins to become possible for children with autism.
“Having a comprehensive evaluation and medical diagnosis enables parents to access specialized services,” she says. “Our initial diagnostic assessments offer a blueprint of where to start,” Chawarska explains, adding that parents can take the plan to Birth to Three or to their school. “We often follow up with children over the years, tracking their progress and updating their educational programs, as their skills expand or new needs arise.”
Diaz and Pollack brought the initial diagnostic report to Daniel’s preschool and dove into implementing the recommendations.
“We already had some services at the school, but once we had this, everything changed. He had an individualized plan that touched everything from brushing teeth to eating and drinking,” Diaz says. “It affected his social skills, too. He did a lot of parallel play and we made sure to put him with kids whose development was not delayed, so that he would hopefully mimic them.”
The recommendations from Yale, Pollack says, were key. “The reports from the Child Study Center experts were very useful and important in shaping the individualized education plan that the school adopted for the academic year and beyond,” he says. “We went there twice, a few years apart, and those reports had a lasting effect by impacting the school's approach to customizing Daniel’s educational needs.”
The positive effects were apparent. After his intervention services started, Daniel was saying new words by age 3½, Diaz says. By the time he was ready for kindergarten, he had made so many strides that he needed less individual instruction and could spend more time in a kindergarten classroom.
“I was happy for him, but it was also very scary as he had been cushioned for so long,” she says.
Daniel’s parents were adept at advocating for their son and negotiating with the school system, Chawarska points out. “They had the right attitude,” she says. “Instead of saying, ‘You must do X, Y, Z,’ they opened up the conversation of how to work together, and I think that made the schools very responsive to their and to our suggestions.”
Meanwhile, Diaz began to educate herself about autism, frequently attending lectures and workshops for parents. They were helpful—to a point. “After Danny got his diagnosis, we had to give him a lot of attention and on top of it, I was going to all these seminars and reading all these books about it,” she says. “I remember realizing I should be at home with my child instead of trying to learn more about autism. Because it’s not a one-size-fits-all diagnosis.”
The conclusion she came to was that she needed to figure out much of it on her own. “I said, ‘Forget all of these books.’ Every human is different. I decided I would do everything in my power to just raise him as normally as I possibly could, and have him be a part of society and not isolate him in any way,” she says.
Daniel’s parents signed him up for baseball and other sports, and he would go along, but Diaz says she noticed that he wasn’t making choices of his own—so that became another goal. “I told him that he needed to tell me if he didn’t like something and to not just do it because Mama and Dad want him to. I saw it as a little step for him to be independent and take charge of his own life,” she says.
Tracking Danny's progress
As Daniel moved through elementary school, he continued to thrive. “In middle school and high school, he was great about his homework and didn’t need my help anymore,” she says.
He discovered fencing and joined the high school team and recently got his driver’s license. In his spare time, he nurtured his love for marine life, visiting aquariums, beaches, and national parks whenever he could.
In high school, Daniel also attended the Bridgeport Regional Vocational Aquaculture School, spending mornings there and afternoons at Fairfield Ludlowe.
“When we applied to the Aquaculture School, there were concerns that the transition to high school was enough for Dan and that he should hold off since their admissions process is very selective and the coursework is typically more difficult than at the public school,” Pollack says. “We fought that and they changed their minds. In his first term, he took a biology class and not only got an A, but his teacher gave him a certificate award designating him as the class’s budding biologist. In his senior year, he took college-level oceanography coursework—and received college credit.”
Daniel’s college studies are just beginning, but he already has a head start on his degree, his father points out.
“I’ve always loved nature and animals,” Daniel says, adding that he was extremely happy to graduate from high school, an experience he described as sometimes challenging academically and socially, but mostly “all right.”
Daniel says he hopes to land a job doing research after college, possibly with sharks or the coral reef.
Pollack describes his son as shy and soft-spoken, but also driven. “He is remarkably mature for his age, and we are extremely proud of him,” he says.
At Yale, research continues
When Daniel first came to Yale, Chawarska and her colleagues were fine-tuning their approach to diagnosing early autism in toddlers and linking families to best-practice and evidence-based interventions in their communities.
“Danny and his cohort taught us a tremendous amount about early expression of autism, how to diagnose children effectively, and what to expect of their neurodevelopmental trajectories,” Chawarska says. “Now, we have taken what we learned in the early 2000s to a different level.”
Today, Chawarska says, researchers are searching for very early mechanisms that give rise to autism symptoms using advanced neuroimaging, neurodevelopmental, and behavioral approaches.
“We focus our investigation on younger siblings of children with ASD, who have a greater likelihood of developing autism than children in the general population. Our goal is to better understand the mechanisms which are at play during pregnancy and shortly after birth that contribute to development of the core autism symptoms later on,” she says. “We believe that this knowledge will contribute to the development of new highly targeted, personalized interventions aimed at ensuring that children with autism realize their full potential.”
The Child Study Center is one of the few centers in the world doing this work, she adds. “And we are very grateful to all the wonderful families who participate in these studies,” Chawarska says. “The families appreciate the scientific value of the studies, and they also know that we are here for them, should any concerns arise regarding their child’s development.”
The Child Study Center is recruiting pregnant mothers and newborn babies to better understand neurodevelopment during prenatal and postnatal periods in younger siblings of children with autism and to help develop more effective monitoring and intervention strategies.
For more information on this study, contact Karen Franchi at email@example.com.