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This is a semi-annual newslefrcr ofthe CDC-funded Study to ExploreEarly Development. The purpose ofthis newsletter is to inform the publicof the study's progress.

SUMMER 2010

ISSUE 3

INSIDE THIS ISSUE

Data Col lect ions Corner 2

SEED Progress 2

Social Skil ls in Preschoolerswith Autism 3Recruiting Spanish-Speaking Families 4

SEED Spreads Its RootsThis spring the SEED staff at KaiserPermanente Division of Researchin Oakland, CA held a CommunityAdvisory Board meeting. Boardmembers talked about recruitingSpanish speaking families for thestudy and asked whether childrenwith ASD, who have communicationdifficulties, have even more troublelearning a second language thanthose who don't. Staff talked aboutwhat is known from research. One ofthe Board members, Jane Schoenfeld,looked into these questions andshares her perspective.

Walk down the s t reet in the SanFrancisco Bay Area, and you can hearas many as f ive d i f ferent languages.And that 's just a shor t walk . Accord ingto the 2000 census, more than threehundred d i f ferent languages arespoken in the United States. So whyl imi t your ch i ldren to Engl ish? Whyno t he lp them be b i l i ngua l?

Chi ldren who do not speak Engl ish athome have a head start. They haveto learn Engl ish to funct ion in th issoc iety . Engl ish speaking parentsknow that i t 's good to teach theirch i ldren a second language, Thechi ldren learn how language worksand may become more f lex ib leth inkers, They a lso learn about othercul tures. When the ch i ldren are o ldeLspeaking two languages may evenhe lp them ge t a j ob .

Language lea rn ing i s a l ong andcomplex process. I t takes t imeto learn vocabulary and how toput sentences together. I t takes

more t ime to learn how to carryon a conversat ion or g ive a formalspeech. But researchers agree thatlearn ing two languages does notcause l anguage de lays . A Be lg ianresearche4 Annick De Houwe4 saidthat many ch i ldren grow up speakingtwo or more languages and do nothave language d isorders.

But i t may seem st range to hearyoung b i l i ngua l ch i l d ren speak .They say th ings l ike "dame thefork" or "give me el tenedor."Perhaps they don ' t know the wordfor " fork" in the i r second languageand they ' re us ing the i r f i rs t one tofi l l the gap. Researchers say thesesubst i tu t ions mean that the ch i ldrenare soc ia l ly aware. These ch i ldrenknow thei r l is tener wi l l understandthem. Researchers a lso say thesesubst i tu t ions mean that the ch i ldrenunderstand the words and how theyf i t in the sentence. These ch i ldrenhave a good understanding of howlanguage works ,

Wha t happens when ch i l d renhave aut ism? These chi ldren haveoroblems wi th soc ia l awareness andlanguage . Many peop le assume tha tlearn ing a second language is d i f f icu l tfor them. But that may not be t rue.Researchers in Canada and the USAhave found that ch i ldren who haveproblems speaking don ' t have anymore problems when they ' re learn ingtwo languages .

Many doctors and speech therapistsadvise parents to s top speaking the i r

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SEED Spreads Its Roots (cont'd)nat ive language at home becausethey want the ch i ldren to focus onlearn ing Engl ish. However , Kremer-Sadl ick, a researcher in Cal i forn ia,says that i t may l imi t the ch i ldren 'sdeveloDment . Parents can do amuch bet ter job of ra is ing the i rch i ldren when they speak the i rnat ive language.

Fami ly t ies are s t ronger wheneveryday conversations are inthe parents ' nat ive language. Thechi ldren a lso fee l more secure. ALat ina parent had problems when

her doctor to ld to speak only Engl ishto her 9-year-old daughter. Thedaughter had aut ism. "My Engl ish isnot very good so our frustration washuge when we couldn ' t understandeach other. As a result we becamemore distant from each other." Lifeimproved when she decided to goback to Spanish. "My daughter canunderstand both languages. I canread her favorite stories, and wecan s ing, p lay and learn together , "These stor ies, songs and gameshelp the ch i ldren fee l par t o f the i r

fami ly and the i r cu l ture, The mothertongue is , a f ter a l l , the language ofthe heart.

Young children can benefit fromlea rn ing a second language .Learn ing two languages at thesame t ime wi l l not cause languageproblems or make languageproblems worse. And chi ldrenwhose f i rs t language is not Engl ishshould speak the i r nat ive languageat home. This wi l l g ive them abet ter chance of succeeding in theEngl ish speaking wor ld .

Data Collections Corner: HIPAA Medical Record Release*HIPAA" refers to the HealthInsurance Por tabi l i ty andAccountabil i ty Act of 1996. Thelaw was passed to help people gethealth insurance and to protecttheir privacy. It is important formedica l research.

In SEED, the HIPAA Medica lRelease Form allows famil ies togive permission to SEED staffto get copies of medical recordsfor ch i ldren and the i r mothers.The medica l records show thei l lnesses, medicat ions and other

procedures a person has had. Themedical records are the best placeto get this information. Gett ingpermission to look at these recordsis very important for SEED to besuccessful.

The HIPAA medical records releaseforms are in the green'Forms toReturn" fo lder in the enro l lmentpacket . B io log ica l mothers shouldcomplete the medical recordsrelease forms for al l the medicalproviders she visited in the threeyears before her chi ld was born.

A parent or guard ian shouldcomplete forms for al l of thehealth care oroviders the childhas seen s ince b i r th . There is achecklist in the packet to helpfami l ies remember a l l o f the typesof medical providers that themother and ch i ld may have seen,

I f you have quest ions, p lease ca l lus, to l l f ree, a t 1-866-633-8003and we can help you completethese forms. THANKS.

but we know that some fami l ieswon' t be able to comoleteeverything.

We hope you wi l l be able tocomplete a l l o f your i tems. I fyou are s t i l l work ing on any ofthe quest ionnai res or d iar ies,p lease make t ime to completethem and mai l them back tous. I f we have ca l led you for aninterv iew or to schedule a v is i t ,p lease ca l l us back. I t is veryimpor tant that we have a l l o fyour in format ion.

Highlights of SEED ProgressSEED progress is be ing madeat the steady pace that weplanned, We are very p leasedto have reached our enro l lmentgoal by enro l l ing 2,765 fami l iesto date and wi l l cont inueenro l l ing unt i l we reach our goalof complet ing data co l lect ionwi th 70olo of a l l SEED fami l ies.

We know that i t is hard to geta l l the in format ion we needfrom every family. We want toget a l l the quest ionnai res, v is i ts ,and samples from every family,

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x As of July 13, 2010

Issue 3 Study to Exp lo re Ear ly Deve lopment (SEED)

Social Skills in Preschoolerswith AutismOne of the defining features ofaut ism spectrum disorders (ASD)is diff iculty with social interaction.As preschoolers, chi ldren with ASDoften fai l to develop the pretendplay and conversat ional sk i l lsthat the i r typ ica l ly developingpeers are gain ing at the samet ime. Chi ldren wi th ASD are morel ike ly to prefer to p lay a lone andto play repetit ively with toys andother objects, rather than engagein in teract ive make-bel ieve p lay,They are a lso l ike ly to have adi f f icu l t t ime ta lk ing to adul ts andother chi ldren, due to diff icultymaking eye contact and us inglanguage in soc ia l ways .

As part of their chi ld's therapeuticteam, parents can help the i rch i ldren improve the i r soc ia lin teract ions by p lay ing wi th them.Pretend p lay g ives ch i ldren a moremotivating opportunity to practicethe i r l anguage sk i l l s and he lpsthem develop sk i l ls that wi l l he lpthem relate to their peers. Beloware some suggest ions for he lp ingchi ldren wi th ASD expand the i rpretend play:

o Join your chi ld on the f loorand begin by playing next toh im or her . Take toys s imi larto the ones he/she is playingwi th and t ry imi ta t ing your ch i ld .I f your ch i ld doesn ' t seem tonotice, try gently interruptinghis/her play. For example, i fyour ch i ld is ro l l ing cars on thefloor, try rol l ing a different carnearby. Have your car gentlycrash in to your ch i ld 's .

o Ask quest ions. Have your ch i ldte l l you what he/she is do ingwi th the toys, and ask quest ions

about what is go ing to happennext . Try to g ive your ch i ldsuggestions for story " ideas"to help him or her pretend. Forexamp le , i f you r ch i l d i s l i n i ng updinosaurs, ask i f the d inosaursare going on a t r ip . Are theygoing to the p layground? Toschool?

o Model pretend play. Showyour ch i ld how to pretend. P icka toy f igure or an imal and havei t " ta lk" to your ch i ld or to theother toys. Use an animatedvoice and excited gestures tohelp draw your ch i ld in and showhim/her how to create a story,

o Change i t up. I f your ch i ldusual ly fo l lows the same scr ip tin his/her play, try to gentlyinser t new ideas. For example, i fyour ch i ld a lways has a b i r thdayparty for the teddy bear, trymaking it a different toy'sb i r thday or in t roducing a newgame at the "birthday party."I f your ch i ld on ly p lays wi tht ra ins, t ry p lay ing nearby wi tha i rp lanes.

o Have fun! Remembetu l t imate ly the most impor tantth ing you can do for your ch i ldis to be there. So enjoy playingwi th your ch i ld in ways that arefun for h im/her as wel l , whi legent ly expanding h is /her p laysk i l ls . Just hav ing fun t ime wi thyou g ives your ch i ld the chanceto bui ld new socia l sk i l ls .

Highlights of NCSEED Progress

477 of 2,765 (or 15.1olo) of the total

number o f fami l ies enro l led in SEED

have come from NC.

So far we have invi ted 3718 famil ies,

471 have enrol led, and approximately

233 have f inished their part ic ipat ion.

Many famil ies are st i l l working

through the mult iple study steps and

a few have needed to drop out. Al l

study staff realize that families devote

a lot of t ime to complete so many

forms, interviews and assessments.

We truly appreciate our North

Carol ina famil ies who have given their

time to support our research efforts,

xAs of August 20,20tO

Study to Explore Early Development (SEED) Issue 3

i&ffiStudy to Explore Early Development (SEED)

The Un ivers i ty o f Nor th Caro l ina a t Chape l H i l lCampus Box 8126Chapel Hi l l . NC 27599-8126

ADDRESS SERVTCE REQUESTED

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Recruiting Spanish-Speaking FamiliesLatino famil ies tend to receive fewer services for theirchi ldren with autism than other famil ies. There also havenot been many chances for Spanish speaking fami l ies totake part in research.

Surveys from around the country show there is lessaut ism among Lat inos than other ethnic Aroups, butscientists do not know why. SEED might give someanswers.

The Colorado and California sites are looking for Spanishspeaking famil ies to take part in SEED. There are manyLatino famil ies in both regions. The SEED scientists seethis as a chance to learn more about autism in Latinofami l ies. I t is a lso a chance for Spanish speaking fami l iesto be in research and learn about how children growand develop. Services for chi ldren with autism are lessavai lab le for Spanish speaking fami l ies, By tak ing par tin research, parents can learn more about their chi ldrenand about services in the community.

Having Spanish speaking fami l ies in SEED means thatthe staff has to "go an extra mile" to help these famil ies

get through the study. It means bi l ingual staff needsto be involved a l l the way through the s tudy and a l lmaterials have to be translated.

SEED staff members have to be sensit ive to manythings. They have to think about how Latino parentsra ise the i r ch i ldren and about the ro les of men andwomen in the family. They also have to be aware ofwhat Latino parents might feel about the research. SEEDLatino staff members can understand Darents'concerns.They can explain why taking part in this research isimpor tant and how i t can help Spanish-speaking fami l ieswith chi ldren who have autism. It does take extra t imeto involve Spanish-speaking famil ies, but the scientistswho lead the study know what they learn can reallyhelp develop service options for Latino famil ies. And,th is could mean that Lat ino ch i ldren wi th aut ism wi l lget better care and treatment in the future. To date,SEED has enro l led 772 fami l ies for whom Spanish is thepr imary language used at home.

C A D D R E

Issue 3 Study to Exp lo re Ear ly Deve lopment (SEED)