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>Screening for Autism and Developmental Delays at 12 months

May 21, 2011

>Some of my long-standing burdens for International adoption, particularly from Korea, are that children with developmental delays be identified earlier, that meaningful therapeutic intervention be started at an earlier age, and that adopting families be more  fully informed about their waiting child’s development so they can have the appropriate plans and supports in place when their child comes home.

It is a rare child placed for International adoption (IA) from Korea whose birth mother is a gifted violinist, studying pre-med in college who has a one-time lapse in judgment that leads to pregnancy. Rather, the majority of the children placed for IA have risk factors very much like those placed for adoption in the U.S.: little or no prenatal care; PAE (prenatal exposure to alcohol); gentic risk for mental illness or developmental delay; born prematurely.

By Korean law, all kids currently available for IA were passed over by domestic adoptive families. In some cases, that only means there were not sufficient numbers of domestic families to adopt the number of available children. Just like in the U.S., many Korean families, given the choice, choose to adopt a child with fewer risk factors. So the pool of children available for IA is not a broad cross section sliced from a Bell curve of the population; statistically kids waiting for families living abroad are high-risk.

All of that is background so you can understand my excitement at this summary of a study that just appeared in the April 28, 2011 on-line Journal of Peditrics. Researchers at the University of California, San Diego School of Medicine have developed a 5-minute screening questionnaire completed by parents or caregivers at a child’s 12 month well baby visit. The article reports:

“The study screened 10,479 one-year-olds in the San Diego region.  At their child’s regular one-year check up, parents or caregivers were given a brief questionnaire called the Communication and Symbolic Behavior Scales Developmental Profile Infant-Toddler Checklist that asked questions about a child’s use of eye contact, sounds, words, gestures, object recognition and other forms of age-appropriate communication.  Any infant who failed the screening was referred… for further testing, and re-evaluated every six months until age 3.”

The study showed the questionnaire had 75% accuracy in identifying children who were subsequently diagnosed with autism and other significant developmental delays. As a result, the children identified as high risk at 12 months were followed more closely and, where it was indicated, received appropriate intervention earlier than children who were not screened.

It would be valuable if pediatricians in Korea used this tool to screen children at 12 months who are listed for International adoption. 25% of adopting families, when they travel, discover that their child is alarmingly more delayed than they understood (almost half of this group questioned whether they could go through with the adoption) and another 30% report being surprised by the child’s developmental level being less than updates led them to believe.

So more than 50% of parents adopting from Korea have unexpected concerns at the time they bring their child home. Yet the adoption transition to the new family makes it difficult to discern whether delays are genuine or are induced by other factors like behavioral regression, the language transition, the difference between Korean and American child-rearing practices, or the process of bonding and attaching to the new family. So unless the child comes home with a known diagnosis, adopting families often go through a watch-and-wait period of 6-12 months, hoping delays are adoption-induced and will eventually self-correct.

The value of performing this screening at 12 months in Korea is obvious. The questionnaire would be completed by the child’s foster mother who knows the child well and who is not impeded by language or any other transition factor. Children identified as being at higher risk for delays on the survey would be more closely followed in Korea and possibly begin receiving appropriate services while they are waiting to go home.

Their adoptive families could count on meaningful, standardized information on their child’s development and where early intervention services may be indicated, parents can investigate their options while they wait. The latter is especially important now that children are coming home significantly older.

The U.S. intervention system is based on a birth through age three model. Birth through three services are attachment-friendly because they are provided in the family’s home. But when a child turns three, services are provided in a public school setting. So families bringing home children who are approaching their second birthday (or are older) have a very short window of time to negotiate the adoption transition, get the child tested and enrolled in at-home service programs before their child ages out on his third birthday. However, children identified as at-risk in Korea could be enrolled almost immediately

The only wrinkle I can see is that since this screening  tool was developed in America, culturally informed professionals would need to review and tweak any survey questions impacted by cultural differences in child-rearing practices. And of course, the system in Korea would need to incorporate giving and scoring the survey at the 12 month visit, then reporting the results to waiting families.

Of course, with routine screening, more waiting parents may receive meaningful reports noting possible developmental delays which are being followed. But children have a right to go home to families who are aware of and are prepared to meet their needs. Korea is a first-world country with medical and foster-care systems to be envied. There is no good reason half of the families adopting Korean children should be surprised by unexpected developmental delays the first time they meet their child.

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