what we know about autism

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Page 1: What We Know About Autism
Page 2: What We Know About Autism

I r YEARS AGO.THISh STORY

THE EXPERTS^THINKINGun un i='±^ q nHAVE BEEN BUSTED,

AND AWARENESS HAS SKYROCKETED, EIVE YEARSEROM NOW, WE WILL LIKELY LEARN SOMETHING NEW THAT

CHANGES EVERYTHING ALL OVER AGAIN, BUT

-WHAT WE KNOWNOW ABOUT

AUTISMCOULD CHANGE A CHILD'S LIFE.

BY KELLEY KING HEYWORTH • PHOTOGRAPHY BY AMY MIKLER

april 2013 / 83 / parenting,com

Page 3: What We Know About Autism

'Wlien he turned 5 in October,Spike Robinson celebratedwith his parents, three sib-lings, and a pink cake decoratedwith M&M's and lollipops.It was your standard birth-day bash—except when it wastime to sing. "Spike asked usto do it very slowly, and in awhisper," recounts his mom,Shavon Brown-Robinson, wholives in Dania, FL. "And thenhe didn't want us to cut thecake. He didn't want it ruined."He finally relented—and thenburst into tears. "But he gotover it and had a big slice," saysBrown-Robinson proudly.

For most kids, a birthdayparty is a milestone; for Spike,it was a miracle. Just a coupleyears before, he hated cele-brations. "Whenever therewas singing or clapping, he'dstart screaming," says Brown-Robinson. By the time Spikewas 3, he was struggling tomake conversation and walk-ing on his toes. It was clearhe was more than quirky.Brown-Robinson made anappointment for him to be eval-uated at the Miami Children'sHospital Dan Marino Center.

Spike was indeed diag-nosed with autism, also knownas autism spectrum disorder

(ASD), which ranges from mildsocial awkwardness to sensoryproblems (trouble dealing withcertain sounds or textures) toan inability to talk or take careof oneself at all.

"I was so scared for thatdiagnosis," Brown-Robinsonconfesses, "but the momentwe got it, the doors started fly-ing open."

Before Spike was born, sucha story might not have existed.In just the past five years,experts' thinking on autismhas changed, myths have beenbusted, breakthroughs have

Autism is being calledan "epidemic."Verdict: TRUEThe "A" word is enough to rattleany parent: Nearly two-thirdsof young moms and dads areconcerned their child will bediagnosed with ASD, accord-ing to a recent survey by theFlorida Institute of Technology.Ifs no wonder, given the run-away rates. Whereas 1 in 150kids was diagnosed with someform of autism five years ago,1 in 88 kids is on the spec-trum today. These rising rates

N88 NUMBER OF OHILDREN ONTHE SPEOTRUM, UR EROM1 IN 150 EIVE YEARS AGO

been made, awareness has sky-rocketed, and children aremaking the sort of rapid, mean-ingful progress that previouslywould have been unimaginable.In a couple years, we will learnsomething new that changeseverything all over again.But what we knowright now couldchange a child's life.

The following are normal social,verbal, and emotional milestonesfor babies and toddlers. Keep inmind tliat every child develops

differently. If you have concerns,talk to your pediatrician.

3 MONTHSIMITATES SOME

MOVEMENTSAND FACIAL

EXPRESSIONS

to determine what the federalresponse should be.

Ifs the mystery as much asthe increasing prevalence thatwe fear: Autism has no certaincause or simple cure. Ifs suchan enigma that ifs symbol-ized in awareness campaignsby a puzzle piece. But that'schanging. "In the past fiveyears alone, millions of dollarshave been spent on research-ing autism, and we now knowa tremendous amount aboutit," says Rebecca Landa, Ph.D.,director ofthe Center forAutism and Related Disordersat the Kennedy KriegerInstitute in Baltimore.

Autism oniy beginsafter birth.Verdict: FALSEFifty years ago, autistic behav-ior was blamed on "refrigeratormoms" who were too unfeelingto teach their children socialskills. "Now we know there'sa host of genes and environ-mental factors that are likelyinvolved," says Susan Hyman,M.D., professor of pediatricsat the University of RochesterMedical Center and chair ofthe American Academy ofPediatrics (AAP) subcommit-tee on autism.

More than 400 genes haveso far been linked to autismrisk. Some are passed through

families—one in five chü-dren with an autistic siblingwill have it, too. Others aregene mutations that format conception. One possiblecontributor to autism's rise isthat people are having babies

later. The chance for geneglitches increases as parents—especially dads—age, explainsIrva Hertz-Picciotto, Ph.D., anenvironmental epidemiologistat the MIND Institute at theUniversity of California, Davis.

But delayed childbear-ing explains only a verysmall fraction oftherise in autism rates.Environmental fac-tors may turn manyautism genes "on"

oMIIiSTONESCONTINUEONP. I

4 MONTHS ¿ i 8 MONTHSBEGINS TO b MUNI Ho 0 MUNI Ho RESPONDS TO

DEVELOP SOCIAL MAKES SOLID EYE APPEARS JOYFUL EXPRESSIONS OFSMILE CONTACT OFTEN EMOTION

UN 5CHILDREN WITH

AN AUTISTICSIBLING WILLHAVE IT, TOO

inspired Bob Wright, co-founder of Autism Speaks, tosay, "We have an epidemic onour hands.... It is imperativethat the U.S. government stepsup its commitment to help-ing people living with autism

today." Last November,the first congressional

hearing on autism inten years was held

april 2013 / 84 / parenting.com

Page 4: What We Know About Autism

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Page 5: What We Know About Autism

or "off," says Dr. H5TTian. "Thebest studies we have nowpoint to things that babies areexposed to in the womb, whenthe brain is forming," saysHertz-Picciotto. Living in areaswith high levels of air pollu-tion (such as near a freeway),having low levels of folie acid,being overweight or diabetic,and having a high fever dur-ing pregnancy all seem to up awoman's risk ofhaving a childwith autism.

There are simple thingsmoms can do before and afterpregnancy that may reducerisk. Hertz-Picciotto recom-mends taking 600 micrograms(meg) of folie acid daily (mostprenatal vitamins have it)before trying to conceive. Ask

their heads droop behind theirshoulders," says Landa.

Not all—or even most-babies who are stingy withsmiles or have poor neckstrength will go on to haveautism. However, parentsshould note this possible signof delay and mention it to theirpediatrician so he can be moreaware of other warning signslater. "It can also inspire par-ents to be more proactive abouttheir child's development," saysLanda, who recommends par-ents take extra care to point atand label objects that interesttheir children, and read simpleboard books slowly and withexcitement to help their chil-dren make connections aboutobjects that they see outside

Í8MONTHSRECOMMENDED AGE EOR ALLyour ob-gyn what medica-tion you can use to safely bringdown a fever, and stock yourmedicine cabinet with it duringpregnancy.

Babies can displaysigns of autism startingat around 6 months.Verdict: TRUEAutism is notoriously trickyto spot in infants, mainlybecause symptoms can mimicother developmental delays.But researchers have come upwith some reliable red flags.Between 6 and 12 months,babies who go on to haveautism are less likely to smileand vocalize back and forthwith parents. "They aren'ttuned in to people, but things,"says FredVolkmar, M.D., direc-tor of the Child Study Center atYale University. Certain motor-skill delays can be a tip-off evenearlier. "We found that whensix-month-olds were laid ontheir backs andpuUeduptoa sitting position, nine oftenwho went on to have autism let

TDBEof storytime (learning that theduck in a book is the same as aduck in a pond, for instance).

If your child shows signsat around 18 months, heshould he evaluated.Verdict: TRUEAutism isn't usually formallydiagnosed until around 18months, when ifs clearer whatworrisome behavior persists.A lack of words or communi-cative gestures Qike pointing),and repetitive behaviors suchas sorting objects, are red flagsat this stage. These are thingsyour child's doctor should askabout at the 18-month checkup,when the AAP recommendspediatricians screen all kids forautism. "Once a child screenspositive, he then needs to seea specialist for an evaluation,"says Géraldine Dawson, M.D.,professor of psychiatry at theUniversity of North Carolinaand the chief science officer forAutism Speaks.

The problem is many well-meaning pediatricians tell

parents to wait and see."I knew something wasn't rightfrom the start," says SarahCalzone, whose son, Stephen,now 6, has ASD. "He didn'tsmile, and everyday sounds likethe crumpling of grocery bagswere like nails on a chalkboardto him. His doctor kept say-ing boys were different." WhenStephen was 18 months, he'dscoop his Little People toys ina pile, scatter them, and repeatthe cycle."I begged the doc-tor, 'Can you trust my mother'sinstinct on this one?'" Calzone,who lives in Stratford, CT, isgrateful she pushed: She got thename of a local specialist whodiagnosed autism, and thanksto treatments at the Yale ChildStudy Center, Stephen is doingwell in public school. He lovessoccer, says Calzone, "and hasseveral true friends."

"Parents should not 'waitand see.' The earlier thatdelays are identified, thesooner you can help yourchild," says Landa. Starting at16 months, you can go onlineand fill out the M-CHAT, afree, AAP-approved screen-ing tool (m-chat.org). Make anappointment with your pedia-trician if you're concerned withthe results.

Therapy can't "rewire"the autistic hrain.Verdict: FALSEExperts like Dr. Dawson andLanda think age 1 to 2 is primetime to start autism treatments."The younger the brain is, themore changeable it is," saysLanda. In her clinics with tod-dlers, Landa teaches parentsto imitate the way their chil-dren play and then help themlearn to do new things with toys.Being a "play partner" in thisway may help build commu-nication circuits in the brain.Karin HiU credits play-partnersessions for helping her daugh-ter Natalie, who was flagged ashigh-risk for ASD at age 1. "AllNatalie wanted to do was tap thewindow. I thought, 'How is thisgoing to work?' It was incredibly

frustrating for a long time. ButI started tapping the window,too," says Hill, who lives in WestChester, PA 'All of a sudden,Natalie looked in my eyes andsmiled. I felt like I could cry."

For children 2 and older.Applied Behavioral Analysis(ABA) is the gold standard. InABA teachers and parents showkids how to, say, ask for a drink ofwater; when they do it, they geta reward, Mke a piece of candy,and are encouraged to do it again.OneespeciallypromisingformofABA is Pivotal Response Training(PRT), which rewards childrenwith items related to an activity(a chud who cares for a teddy bearmight begiven the bear). "AfterPRT, Stephen's speech therapistasked if we'd put him on medica-tion," says Calzone. "The socialgains were that amazing." If youhave an autistic chud over 2, lookfor an ABA or PRT therapist nearyou in the Resource Guide onautismspeaks.org.

Following Spike's diagnosis,Brown-Robinson turned herfear into action. She scoutedout local schools and autismservices. Through intensiveone-on-one exchanges withteachers and special tools likepicture cards. Spike startedlearning how to speak up, ratherthan act out, when he wasuncomfortable. All of whichled to the first happy birthdayof his 5-year-old existence. ©

KelleyKingHeyworth liveswith her husband and threesons, ages 6,4, andl, inMassachusetts.

M U i S ^ S CONTINUED FffiM P. M.

9 MONTHSCRIES WHEN

PARENTS LEAVE

10 MONTHSPREFERS

CERTAIN PEOPLEAND TOYS

12 MONTHSMAKES HAND

GESTURES LIKEPOINTING AND

WAVING

16 MONTHSCONCERNED? FILLOUT THE M-CHATSCREENING TEST

(M-CHAT.ORG)

18 MONTHSSAYS SINGLE

WORDS

2 YEARSSAYS TWO-WORD

PHRASES

april 2013 / 86 / parenting.com

Page 6: What We Know About Autism

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