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EARLI EditionTHE
Volume 2 Spring 2012
Welcome to our second EARLI Edition!
As an EARLI investigatorat the Johns HopkinsBloomberg School ofPublic Health, I want toshare with you a littleabout what led me toautism research andwhy it’s so important tome. I am trained as agenetic epidemiologist,and my early careerfocused on the geneticunderpinnings ofAlzheimer’s disease andschizophrenia. About tenyears ago, I worked downthe hall from CraigNewschaffer, who was then at Hopkins and is now theEARLI Network principal investigator. Craig oftenchatted about autism and the importance of findingout what causes this increasingly commonneuropsychiatric disorder. Learning about autism, theimpact it has on families, and the relatively smallamount of research available on how genes andenvironments may be involved led me to a newpassion – applying my specialty of geneticepidemiology and the new field of epigeneticepidemiology to search for the causes of autism.
In short, epigenetics involves the study of how variousenvironmental factors can affect how our genes areexpressed. Certain chemical arrangements on DNAcan switch genes on and off. I think this is a promisingarea for research into autism, which has proved to be ahighly complex disorder. While prior studies tended tolook in isolation at genetics, or at environments, we’renow looking at these factors in tandem.
Understanding autism and child development also is apersonal interest to me as the mother of two youngsons. Nearly every parent knows another familyaffected by autism, and there is a desire to helpwithout always knowing how. By enrolling myyounger son in an autism-related study as a typicallydeveloping control, my family hopes to further theknowledge of how typical younger siblings develop –and how that compares with the development ofbabies who have an older sibling with an ASD.
While you’re busily raising your children and graciouslyfinding time to take part in EARLI, please know thatyou don’t stand alone. Many other professionals andfamilies – those directly affected by autism and thosewho aren’t – are united in a search for answers.
Dani Fallin, PhD
INVESTIGATOR’S VOICESpotlight on the Montero Family
Juggling three young children can be a lot forany set of parents – particularly if one of thekids has an autism spectrum disorder. But
the Montero family of Pennsylvania, who hasenrolled in EARLI twice, has been blessedenough to handle family life with few headaches.
Jhon and Jennifer Montero’s 6-year-old son,Gabriel, was diagnosed with an autism spectrumdisorder at age 2. Gabriel’s signs of autism werefirst discovered by the Children’s Hospital ofPhiladelphia’s Feeding and Swallowing Teamand were soon confirmed by a developmentalpediatrician. “We never saw the warning signs,”Jennifer said.
e Monteros know firsthand why earlyintervention is so important for any child with apotential delay. “Gabriel got so much help whenhe was younger, he’s come very far,” says Jennifer.She was initially worried about the transitionfrom preschool to kindergarten, but said therewere no issues. Gabriel currently has one-on-onehelp at school to get him through the day.
Jhon has a special bond with Gabriel and helpshim at home when service providers are notaround. “He comes up with fun, unique ways todo things Gabriel doesn’t want to do,” Jennifersaid of Jhon. “I’ve never seen parents act the waythat he does.” For example, to deal with facialsensitivity, Jhon would get Gabriel to lie on thefloor with him and pretend to be in special carswhile brushing their teeth—or get down on allfours and eat food off the plate like pigs.
By the time Gabriel was 4, Jennifer waspregnant with their first daughter, Soveida. “We were nervous about having another childbecause we never saw the [autism] warning signswith Gabriel,” she recalled. is concernprompted Jennifer to enroll her family into theEARLI Study after seeing a brochure in aprogram office.
Not too long after she gave birth to Soveida,Jennifer was pregnant again with their seconddaughter. Giselle, who was born 11 months afterSoveida, was a welcome surprise to Jennifer andJhon. Considering that Giselle would also beseen by autism experts, they did not hesitate toenroll her into the EARLI Study.
“We were worried about Gabriel having twosisters because he was an only child for severalyears and he has autism,” said Jennifer. e factthat Gabriel is not one to “crave attention”removed any concerns about jealousy, she said. “He loves them and is very affectionatewith them.”
Asked what advice she would give to otherfamilies with multiple children, Jennifer said:“Take a deep breath.” She has found thatdealing with a son with autism and having twodaughters less than a year apart was “not asdifficult as people made it out to be.”
Being involved in the EARLI Study has reassuredJennifer and her family that professionals arewatching their babies’ development – either forreassurance that they seem fine or to pinpointthe signs of autism as early as possible. Sherecommends the EARLI Study to other momswho have become pregnant, and she poses asimple question about a parent’s ability to spotsubtle signs: “How will you know? e autismspectrum is huge.”
Soveida shows sisterly love to Giselle.Both girls are enrolled in the EARLI Study.
Would you like your family featured in an upcoming EARLI Edition? Let your site coordinator know!
The Montero family smiles for their first familyphoto together since the birth of Giselle. Dani Fallin, principal
investigator of the Marylandsite, and her family.
Volume 2 | Spring 2012EARLI EditionTHE
John BakeR, a graduatestudent whose studies allowhim to spend mostafternoons with his 8-year-old son Ian, is participatingin EARLI through the KaiserPermanente site in NorthernCalifornia. Baker reflects onthe diagnosis of his son andhow he tries to build on hisson’s strengths and interests.
“One of the first things thatclued us in to wanting a diagnosis was his early aggression whenwe first took him to preschool. We have a large family, but it hadbeen a long time since we’ve had babies in the family, so Ianhadn’t been around that many kids before going to preschool. Sowhen he first got to preschool and started pushing the other kidsand not looking at them in the eyes, it was surprising.”
Comparing his own boyhood behavior to Ian’s, “I would say,‘Well, I used to be a little rough, and not look someone in theeye.’ I’m not sure it was straight-out denial, but I was a littlereluctant to recognize anything was wrong,” he says.
When Baker and his wife, Claire Ramsey, were expecting theirdaughter, EARLI seemed like a good opportunity. eirdaughter is now almost a year old. “If this helps other people tohelp their children who are affected by autism, then we’ve doneour part,” Baker says.
FatheRS & aSd: Strength in Numbers
Rodney Peete is a former profootball player and author of “NotMy Boy! A Father, A Son, and OneFamily’s Journey with Autism”(Hyperion, 2010). In his book, hetells how his initial refusal to acceptR.J.’s autism diagnosis pushed hismarriage to the brink, until his wife,actress Holly Robinson Peete, gavehim an ultimatum. at persuadedhim to get on board with R.J.’stherapy because they had no time tolose. Making that change, he writes,gave him new hope. “I felt liberated,” he writes.
Peete’s book details his family’s experience, as well as those offathers from many walks of life. He covers various topics from afather’s point of view: diagnosis, education, finances, findingsocial support, dealing with a child’s behavior in public, andhelping siblings cope.
“I hope that by sharing my story, I can help men find a way toopen up about the emotions that we often don’t or can’t express,and women can understand more about the different way mendeal with their troubles,” he writes.
Rodney Peete’s Not My Boy! AFather, A Son, and One Family’sJourney with Autism.
The Baker family, with Ian, 8, andCharlotte, 7 months.
Recognize that kids may be different. You need to be able toaccept that and the strengths he does have, and supportwhat he likes to do. … It’s being aware of your child’sstrengths and adjusting your behavior to nurture hisstrengths instead of trying to correct his weaknesses.
— John Baker
“ “
On NBC’s Parenthood series, characterAdam Braverman realistically depicts thechallenges and joys of raising Max, his sonwho has Asperger syndrome.
Photo credit: NBC Universal
“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 wifeshortly after their son’s autism spectrum diagnosis
It’s the story of many parents: worrying about achild’s puzzling behavior, debating how much toindulge his quirky interests, struggling with
school officials, waiting anxiously for an appoint-ment with a specialist, coming to terms with anautism spectrum diagnosis.
Although it sounds realistic, this is a fictional plot on“Parenthood,” NBC’s primetime look at theBraverman family. With scenes of frustration,humor and grace, the 2010 pilot sensitively followspirate-obsessed Max Braverman and his worriedparents as they progress from Max’s aggressivemeltdown at school, to his diagnosis of Aspergersyndrome. All the while, viewers see a strong, lovingfather coping with a new reality for his family.
e EARLI Study is proud to have the volunteerinvolvement of so many fathers. Of our enrolledfamilies, 67 percent have participating dads. CraigNewschaffer, EARLI Network principal investigatorand dad to a son with ASD, had this to say: “Fathers’contribution to EARLI is important and exciting onmany levels. First, it underscores the level ofinvolvement today’s dads have in the lives of theirchildren with ASD. Secondly, the information andbiologic samples from dads give us a truly uniqueability to explore mechanisms that could be involvedin causing ASDs that we could not look at otherwise.”
To honor all fathers raising children on the autismspectrum, we would like to introduce four suchfathers—two of whom are EARLI participants.
Did you know?
At enrollment, EARLI moms
ranged in age from 21 to 51
years, and EARLI dads ranged
in age from 23 to 53 years.
www.eaRLIStudy.org
Privacy StatementThe EARLI Study is grateful to all our families,and we respect your privacy and confidentiality.Any families featured in this newsletter havegiven their explicit permission to EARLI.
Find us on Facebookwww.facebook.com/The.EARLI.Study
Lou MeLgaReJo is a televisionsports director in Chicago whoproduced a widely viewed YouTubevideo called “‘Fixing’ Autism,” which won an award from Autism Speaks.Melgarejo knows that “fixing autism” is a phrase that can be misconstrued, but tohim, it means providing his 6-year-old daughter, Bianca, access to the services andcare she needs to reach her potential – and fixing a broken system of medical care.“I wanted the video to be a call to arms for dads,” he says.
“ere’s an innate sense in men when something is not functioning normal orright, we want to fix it,” Melgarejo said in an interview with EARLI.
After a child is diagnosed with an autism spectrum disorder, “it can shut a lot ofmen down,” he says. But if you don’t move toward acceptance of your child’s needsand you don’t get engaged with your child, “you’re really going to lose out,” he says.
In addition to Bianca, Lou and his wife, Elsa, also have a younger daughter andson who are typically developing.
Lou Melgarejo’s ‘Fixing’ Autism video,which he made about his daughter,has travelled widely over the internet.
Many thanks go to our pre-enrolled familiesfor including EARLI in your plans for the future.We deeply appreciate your early commitmentand willingness to communicate with us – all694 of you! As always, feel free to let your sitecoordinator know if you would like to becontacted more or less frequently, or if youhave any exciting family news to share with us.
Thanks to Our Pre-enrolled Families
The EARLI Study extends a big thank you toCOASTERS Network, Inc. for their generousdonations. COASTERS raises awareness andfunds to contribute to autism research. Wegreatly appreciate your support! For more aboutCOASTERS, see their Facebook page or followthem on Twitter @CoastersNetwork.
Thank you to COASTERS Network
My advice would be to love the child like you would love any of yourother children. … I play football with [Maddox] and he doesn’t havethe same coordination as my other son but you still have to play withhim. Go out and do extra things and get out of the house.
— Jesse Casados
“ “
JeSSe CaSadoS, an EARLI father from theUniversity of California-Davis site whoworks in research and development for amedical device, says his middle son’sdiagnosis was difficult but has ultimatelybrought his family closer.
“Maddox [now 5 years old] was diagnosed on the higher end of the spectrum.He asks the same question over again and if you don’t answer it the way heanswers, he’ll ask it again,” says Casados, who also has a 7-year-old son and a15-month-old son.
To comfort his wife, Barbara, “I tried to be as strong as possible and not dwellon it, and think of ways to put things at ease not just for myself, but for myfamily,” he recalls. “ere was a time that it was depressing, but we madebetter choices.”
As Maddox was put on a special diet, the rest of the family began to eat morehealthfully, he said. And spending time with Maddox has been a blessing to bothfather and son. “I call him ‘my buddy.’ And I just feel like his personality is likemine. We have a connection, and I think we know that about each other.”
For many in a marriage, an autism diagnosis can beplaced in the ‘worse’ column of ‘for better or forworse,’ but with patience and communication youcan survive. Don’t bottle up your fears. Tell your wife,your friends, or share them with others in a blog andyou will free yourself of the many burdens you aretrying to shoulder and find strength in numbers.
— Lou Melgarejo, in his Lou’s Land blog
“
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Our best wishes on May 13– Mother’s Day!
Did you know?
There have been 1
69
babies born into EARLI
– 71 girls and 98 boys.
Did you know?64 EARLI babies havealready had their 12-month clinic visit.The Casados family, with
Colton, 1, Maddox, 5, and Tyler, 7.
Follow us on Twitter @EARLI_Study
1505 Race Street, Mail Stop 1033Philadelphia, PA 19102www.EARLIStudy.org
Southeast PennsylvaniaDrexel University & the Children’s Hospital of Philadelphia(877) [email protected]
Northeast MarylandJohns Hopkins University & the Kennedy Krieger Institute(877) [email protected]
Northern CaliforniaKaiser Permanente, Division of Research(866) [email protected]
University of California, Davis, & the MIND Institute(866) [email protected]
Did you know?The earliest a mom hasenrolled in EARLI was at 5weeks of pregnancy.
"We started in the study when I was 15 weeks pregnant. It’sbeen great. The staff is great. . . The biggest draw is thedevelopmental screening because, when Saxon was born, I pooh-poohedher delays until she was about a year old, and she didn’t get theearly intervention. Now we know with the EARLI Study, they cancatch it and we can go down the right avenue if there is aproblem. We can get an intervention as soon as possible. … I’drecommend the EARLI Study to anyone with a child with autism.”
Alison Sharp, Participant at Kaiser Permanente in California
What Our Familes say about EARLI...
Many EARLI babies are celebrating their first birthdays and we are so excited to seethem at their 12-month clinic visit. If you have a picture of your EARLI babycelebrating his or her first birthday, please send it to your site coordinator to beincluded in the next issue of e EARLI Edition. We will include as many as we canin the next issue. Messy cake-eating pictures are encouraged!
Share baby’s 1st birthday photo!
Nolan Wood, from the SE Pennsylvania site, on his 1st birthday.
Mike and Alison Sharp, pictured with babyThomas and their three daughters –Taryn, 4, Saxon, 13, and Caley, 17 –and Caley’s boyfriend, Brandon.
