E H T EARLI Edition Volume 2 Spring 2012 Spotlight on the Montero Family INVESTIGATOR’S VOICE Welcome to our second EARLI Edition! uggling three young children can be a lot for any set of parents – particularly if one of the As an EARLI investigator kids has an autism spectrum disorder. But at the Johns Hopkins J Bloomberg School of the Montero family of Pennsylvania, who has enrolled in EARLI twice, has been blessed Public Health, I want to enough to handle family life with few headaches. share with you a little about what led me to Jhon and Jennifer Montero’s 6-year-old son, autism research and Gabriel, was diagnosed with an autism spectrum why it’s so important to me. I am trained as a disorder at age 2. Gabriel’s signs of autism were genetic epidemiologist, first discovered by the Children’s Hospital of and my early career Philadelphia’s Feeding and Swallowing Team focused on the genetic and were soon confirmed by a developmental The Montero family smiles for their first family underpinnings of photo together since the birth of Giselle. Dani Fallin, principal pediatrician. “We never saw the warning signs,” Alzheimer’s disease and investigator of the Maryland Jennifer said. schizophrenia. About ten site, and her family. Not too long after she gave birth to Soveida, years ago, I worked down e Monteros know firsthand why early Jennifer was pregnant again with their second the hall from Craig intervention is so important for any child with a daughter. Giselle, who was born 11 months after Newschaffer, who was then at Hopkins and is now the potential delay. “Gabriel got so much help when Soveida, was a welcome surprise to Jennifer and EARLI Network principal investigator. Craig often he was younger, he’s come very far,” says Jennifer. Jhon. Considering that Giselle would also be chatted about autism and the importance of finding She was initially worried about the transition seen by autism experts, they did not hesitate to out what causes this increasingly common neuropsychiatric disorder. Learning about autism, the from preschool to kindergarten, but said there enroll her into the EARLI Study. were no issues. Gabriel currently has one-on-one impact it has on families, and the relatively small amount of research available on how genes and help at school to get him through the day. “We were worried about Gabriel having two environments may be involved led me to a new sisters because he was an only child for several passion – applying my specialty of genetic Jhon has a special bond with Gabriel and helps years and he has autism,” said Jennifer. e fact him at home when service providers are not epidemiology and the new field of epigenetic that Gabriel is not one to “crave attention” epidemiology to search for the causes of autism. around. “He comes up with fun, unique ways to removed any concerns about jealousy, she do things Gabriel doesn’t want to do,” Jennifer said. “He loves them and is very affectionate In short, epigenetics involves the study of how various said of Jhon. “I’ve never seen parents act the way with them.” environmental factors can affect how our genes are that he does.” For example, to deal with facial expressed. Certain chemical arrangements on DNA sensitivity, Jhon would get Gabriel to lie on the Asked what advice she would give to other can switch genes on and off. I think this is a promising floor with him and pretend to be in special cars families with multiple children, Jennifer said: area for research into autism, which has proved to be a while brushing their teeth—or get down on all “Take a deep breath.” She has found that highly complex disorder. While prior studies tended to fours and eat food off the plate like pigs. dealing with a son with autism and having two look in isolation at genetics, or at environments, we’re now looking at these factors in tandem. daughters less than a year apart was “not as By the time Gabriel was 4, Jennifer was difficult as people made it out to be.” Understanding autism and child development also is a pregnant with their first daughter, Soveida. personal interest to me as the mother of two young “We were nervous about having another child Being involved in the EARLI Study has reassured sons. Nearly every parent knows another family because we never saw the [autism] warning signs Jennifer and her family that professionals are affected by autism, and there is a desire to help with Gabriel,” she recalled. is concern watching their babies’ development – either for without always knowing how. By enrolling my prompted Jennifer to enroll her family into the reassurance that they seem fine or to pinpoint younger son in an autism-related study as a typically EARLI Study after seeing a brochure in a the signs of autism as early as possible. She developing control, my family hopes to further the program office. recommends the EARLI Study to other moms knowledge of how typical younger siblings develop – who have become pregnant, and she poses a and how that compares with the development of simple question about a parent’s ability to spot babies who have an older sibling with an ASD. subtle signs: “How will you know? e autism While you’re busily raising your children and graciously spectrum is huge.” finding time to take part in EARLI, please know that you don’t stand alone. Many other professionals and families – those directly affected by autism and those who aren’t – are united in a search for answers. Soveida shows sisterly love to Giselle. Both girls are enrolled in the EARLI Study. Dani Fallin, PhD Would you like your family featured in an upcoming EARLI Edition? Let your site coordinator know! FatheRS & aSd: Strength in Numbers “I can deal with disease, with illness, with a broken bone – give me something I can fix. But I don’t know how to deal with this.” “Parenthood” character Adam Braverman, talking to his wife shortly after their son’s autism spectrum diagnosis t’s the story of many parents: worrying about a e EARLI Study is proud to have the volunteer child’s puzzling behavior, debating how much to involvement of so many fathers. Of our enrolled Iindulge his quirky interests, struggling with families, 67 percent have participating dads. Craig school officials, waiting anxiously for an appoint - Newschaffer, EARLI Network principal investigator ment with a specialist, coming to terms with an and dad to a son with ASD, had this to say: “Fathers’ autism spectrum diagnosis. contribution to EARLI is important and exciting on many levels. First, it underscores the level of Although it sounds realistic, this is a fictional plot on involvement today’s dads have in the lives of their “Parenthood,” NBC’s primetime look at the children with ASD. Secondly, the information and Braverman family. With scenes of frustration, biologic samples from dads give us a truly unique humor and grace, the 2010 pilot sensitively follows ability to explore mechanisms that could be involved pirate-obsessed Max Braverman and his worried in causing ASDs that we could not look at otherwise.” On NBC’s Parenthood series, character parents as they progress from Max’s aggressive Adam Braverman realistically depicts the meltdown at school, to his diagnosis of Asperger To honor all fathers raising children on the autism challenges and joys of raising Max, his son syndrome. All the while, viewers see a strong, loving spectrum, we would like to introduce four such who has Asperger syndrome. father coping with a new reality for his family. fathers—two of whom are EARLI participants. Photo credit: NBC Universal John BakeR , a graduate now? student whose studies allow Did you k him to spend most LI moms ment, EAR afternoons with his 8-year- At enroll to 51 e from 21 old son Ian, is participating nged in ag nged ra LI dads ra in EARLI through the Kaiser , and EAR years 53 years. Permanente site in Northern rom 23 to California. Baker reflects on in age f the diagnosis of his son and how he tries to build on his son’s strengths and interests. The Baker family, with Ian, 8, and Charlotte, 7 months. Rodney Peete is a former pro “One of the first things that football player and author of “Not clued us in to wanting a diagnosis was his early aggression when My Boy! A Father, A Son, and One we first took him to preschool. We have a large family, but it had Family’s Journey with Autism” been a long time since we’ve had babies in the family, so Ian (Hyperion, 2010). In his book, he hadn’t been around that many kids before going to preschool. So tells how his initial refusal to accept when he first got to preschool and started pushing the other kids R.J.’s autism diagnosis pushed his and not looking at them in the eyes, it was surprising.” marriage to the brink, until his wife, Comparing his own boyhood behavior to Ian’s, “I would say, actress Holly Robinson Peete, gave ‘Well, I used to be a little rough, and not look someone in the him an ultimatum. at persuaded eye.’ I’m not sure it was straight-out denial, but I was a little him to get on board with R.J.’s Rodney Peete’s Not My Boy! A Father, A Son, and One Family’s reluctant to recognize anything was wrong,” he says. therapy because they had no time to lose.