CHAPTER III (continued)

Definition of developmental surveillance

Developmental surveillance is the term that most accurately describes the approach currently practiced by many health care providers and other professionals for the early detection of developmental problems. Developmental surveillance is a flexible, continuous process in which knowledgeable professionals monitor a child's developmental status during the provision of health care services.

Developmental surveillance may be done using parent questionnaires and/or formal screening tests of general development to gather information. All of this information gathered by parent questionnaires and/or screening tests of general development is then reviewed by professionals involved with the developmental process and discussed with the child's parents.

An advantage of using parent questionnaires is that these help to involve the parents in monitoring their child's development. The formal screening tests of general development are typically administered by professionals or paraprofessionals. Appendix D contains a table describing some of the more commonly used tests of general development. An advantage of using standardized tests of general development is that normative data is often available so that a child's scores can be compared to those for typically developing children of the same age.

Identifying an increased concern based on surveillance findings

During the course of surveillance, the professionals may note certain behavioral characteristics that increase concerns that the child may have a specific developmental problem. These concerns may be based on clinical clues noted during the exam, information about risk factors, and parental concerns. Results of a general developmental screening test may also raise concerns about specific developmental problems. Such suspicions may lead the health care provider to do selective screening for a particular developmental problem such as autism or a communication disorder). Selective screening sometimes involves the use of screening tests specifically designed to identify children with that particular developmental problem.

Assessing developmental milestones that are relevant to autism

One method of developmental surveillance is for the professional to look for certain age-specific developmental milestones. Siegel (1991) has provided a useful series of tables on the normal developmental milestones in the social and communicative behavior domains that are pertinent to autism. This information from Siegel along with other information about clinical clues in articles reviewed by the panel was used to develop Table III-3: Developmental Milestones for Communication and Social Skills.

This table lists developmental milestones for communication and social skills, two of the developmental areas that define autism.

The items listed are developmental milestones that children following a typical developmental sequence should exhibit by the time they reach the specified age. Failure to achieve a developmental milestone is a clinical clue that raises concerns that the child may have autism or some other developmental delay or disorder.

Adapted from Siegel (1991) and Table III-5

General Principles of Developmental Surveillance for Young Children

Evidence Ratings: [A] = Strong [B] = Moderate [C] = Limited [D1] = Opinion/No evidence meeting criteria [D2] = Literature not reviewed

Recommendations

Importance and timing of developmental surveillance

1. Periodic developmental surveillance by appropriately trained and qualified health care providers or other professionals is important for all young children. Such routine surveillance provides an active way to identify developmental problems as early as possible. [D2]
2. It is recommended that the process of routine developmental surveillance be ongoing and begin at birth. [D2]

Components of developmental surveillance

3. It is recommended that developmental surveillance for young children include the following components:

• eliciting and attending to parents' concerns
• obtaining a relevant developmental history
• observing children accurately
• sharing opinions and concerns with parents and other professionals who care for the child [D2]

Developmental surveillance as part of periodic health exams

4. Periodic health examinations provide specific opportunities for routine developmental surveillance in young children. During these exams, parent reports about their child's behaviors and direct observations of the child by the examiner may provide useful clues to help identify concerns about possible developmental problems, including autism. [D2]

5. The periodic exams at 15, 18, and 24 months are particularly useful in providing information about possible autism, since characteristics of autism often begin to emerge during the second year of life. During these exams, it is particularly important to assess social development as well as motor and language development. [D2]

Using "developmental milestones" to assess the child's development

6. As part of developmental surveillance of young children, it is important to make sure children have attained developmental milestones. If a child has missed the milestones shown on Table III-3, this may be the first indication of possible autism in a child. [D2]

Need for further evaluation based on developmental surveillance findings

7. When a health care provider or other professional suspects that a child may have autism, further evaluation is recommended. Such evaluations might occur either through private consultants (paid for by private health insurance or directly by the family) or through a publicly funded early intervention program. [D2]

Identifying Clinical Clues and Parental Concerns of Possible Autism

Recommendations

Clinical clues of possible autism

1. It is important to be aware that a small number of easily observed behaviors can be considered "clinical clues" that heighten the concern about possible autism in a child. Clinical clues of possible autism may be identified by parents, healthcare providers, or other professionals who interact with the child. [D2]
2. It is recommended that certain inappropriate behaviors or the lack of certain age-appropriate behaviors be considered as clinical clues for possible autism. These clinical clues signal a need for further evaluation of possible autism. (Those clinical clues identified in the literature evaluation are shown in Tables III-4 and III-5.) [A]

3. If a professional suspects a developmental problem, including possible autism, it is recommended that this concern be discussed with the parents and that recommendations be made for appropriate further evaluation. [D2]

Addressing concerns of parents

4. If parents have concerns that their child may have a developmental problem, including autism, it is recommended that they discuss these concerns with a health care provider or other professional experienced in evaluating young children with developmental problems.

The clinical clues listed in Table III-4 represent delayed or abnormal behaviors that are often seen in children with autism. Some of these findings may also be seen in children who do not have autism but who may have other developmental problems.

If any of these clinical clues are present, further assessment may be needed to evaluate the possibility of autism or other developmental problems.

• Delay or absence of spoken language
• Looks through people; not aware of others
• Not responsive to other people's facial expressions/feelings
• Lack of pretend play; little or no imagination
• Does not show typical interest in, or play near peers purposefully
• Lack of turn taking
• Unable to share pleasure
• Qualitative impairment in nonverbal communication
• Not pointing at an object to direct another person to look at it
• Lack of gaze monitoring
• Lack of initiation of activity or social play
• Unusual or repetitive hand and finger mannerisms
• Unusual reactions, or lack of reaction, to sensory stimuli

Source: This table is derived from Table III-5, which shows clinical clues found in articles that met criteria for in-depth review.

Table III-5 lists behaviors used to identify children with autism that where shown to be clinical clues for autism in scientific studies meeting the criteria for adequate evidence about efficacy for this guideline. For each item listed, the table gives (1) the sensitivity and specificity for identifying autism versus other developmental problems and (2) the corresponding section of the DSM-IV criteria for autism. (See Appendix A for more information about sensitivity and specificity.)

TEST (author, year)	Ability to identify children with autism		Relevant section in DSM-IV
Clinical Clue	Sensitivity	Specificity
ABC: (Oswald, 1991) age of subjects: 2.5 to 31 years
Looks through people	69%	73%	(1A)
Not responsive to other people's   facial expressions/feelings	65%	64%	(1A)
BSE: (Barthelemy, 1992) age of subjects: 2 to 8 years old
Is eager for aloneness	60%	98%	(1D)
CHAT: (Baron-Cohen, 1996) age of subjects: all 18 months old
Lack of prot-declarative pointinga	100%	100%	(1C)
Lack of gaze monitoringb	100%	80%	(1C)
Lack of pretend play	- not reported		(2D)
Lacks all 3 of the above behaviors	100%	95%	(1C&2D)
a pointing at an object to get another person to look at it; b following the gaze of another person who is looking at an object
DSM-III-R: (Siegel, 1990) age of subjects: all < 4 years old
Social interaction
Not aware of others	80%	81%	(1D)
No comfort seeking	62%	78%	(1D)
Impaired imitation	78%	77%	(1C)
No social play	98%	44%	(2D)
No peer friends	100%	39%	(1B)
Communication
No communication	37%	89%	(2A)
No nonverbal communication	85%	65%	(2A)
No imagination	81%	50%	(2D)
Abnormal speech	81%	50%	(2A)
Abnormal language	33%	63%	(2C)
Nonconversational	75%	50%	(2B)
Activities and interests
Motor stereotypies	73%	71%	(3C)
Sensory preoccupation	40%	91%	(3A)
Distress over changes	44%	85%	(3B)
Insistence on routines	79%	66%	(3B)
Restricted interests	40%	83%	(3A)
Optimal solution   Not aware of others and no peer friends	81%	84%	(1D&1B)
ADI-R: (Lord, 1997) age of subjects: 2 to 43 years old
Impairment in social interactionsc
Lack of social responsiveness	97%	39%	(1C)
Lack of social reciprocity	95%	48%	(1D)
Does not form friendships	96%	57%	(1B)
Lack of cooperative playd	94%	30%	(1C)
Lack of turn taking / imitation	96%	35%	(1C)
Unable to share pleasure	91%	48%	(1D)
Abnormal quality of social overtures	96%	57%	(1C)
Impairment in communicationc
Does not point to get desired objects	91%	47%	(1A)
Few expressive, inactive gestures	100%	26%	(1A)
Lack of nonverbal intentionality	95%	42%	(1A)
Limited initiation of activity/play	99%	67%	(2D)
Restricted, repetitive behaviors c
Hand and finger mannerisms	89%	76%	(3C)
Limited curiosity in activities/play	99%	57%	(2D)
Limited sharing in others activities	91%	81%	(1C)

c	Data are for nonverbal subjects and all ratings are for "current" behavior except as noted by d below.
d	Scored as positive if the subject had "ever" had the behavior for at least a 3-month period when over 18 months mental age.

Send questions or comments to: bei@health.state.ny.us
Revised: November 1999