NCHS Data Brief ■ No. 97 ■ May 2012

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Disease Control and Prevention

National Center for Health Statistics

Diagnostic History and Treatment of 

School-aged Children with Autism Spectrum Disorder 

and Special Health Care Needs

Beverly A. Pringle, Ph.D.; Lisa J. Colpe, Ph.D., M.P.H.; Stephen J. Blumberg, Ph.D.; 

Rosa M. Avila, M.S.P.H.; and Michael D. Kogan, Ph.D.

Autism Spectrum Disorder (ASD) is a set of complex neurodevelopment 

disorders characterized by mild to severe problems in social interaction 

and communication along with restricted repetitive behavior patterns (1). 

ASD symptoms begin before age 3 years and last into adulthood, although 

symptoms may improve over time. There is no one best treatment for ASD, 

but the American Academy of Pediatrics recommends early behavioral 

intervention once a child is diagnosed (2). Nearly all children (94%) with ASD 

have special health care needs, defined as requiring health or related services 

beyond those required by children generally (3,4). This report provides 

information on diagnosis and treatment of school-aged (6–17 years) children 

with special health care needs (CSHCN) and ASD. 

Keywords: developmental disorders • health care services • medications • 

Pathways to Diagnosis and Services Study

One-half of school-aged CSHCN with ASD were aged 5 years 

and over when they were first identified as having ASD. 

Key findings

Data from the 2011 Survey 

of Pathways to Diagnosis 

and Services

• The median age when school 

-aged children with special 

health care needs (CSHCN) 

and autism spectrum disorder 

(ASD) were first identified as 

having ASD was 5 years. 

• School-aged CSHCN 

identified as having ASD at a 

younger age (under age 5 years) 

were identified most often by 

generalists and psychologists, 

while those identified later 

(aged 5 years and over) 

were identified primarily by 

psychologists and psychiatrists. 

• Nine out of 10 school-aged 

CSHCN with ASD use one 

or more services to meet their 

developmental needs. Social 

skills training and speech or 

language therapy are the most 

common, each used by almost 

three-fifths of these children.

• More than one-half of 

school-aged CSHCN with ASD 

use psychotropic medication.

Age 2 years

and under

18.7% 

Age 3 years

17.0%

Age 4

years

13.0%

Age 5

years

11.5%

Age 6 years

and over

39.9%

Figure 1. Percent distribution of child's age when parent or guardian was first told that child had 

autism spectrum disorder among children aged 6–17 years with special health care needs and 

autism spectrum disorder: United States, 2011

NOTE: Access data table for Figure 1 at: http://www.cdc.gov/nchs/data/databriefs/db97_tables.pdf#1.

SOURCE: CDC/NCHS, Survey of Pathways to Diagnosis and Services, 2011.
NCHS Data Brief ■ No. 97 ■ May 2012

■  2  ■

• Fewer than one-fifth of school-aged CSHCN with ASD were identified as having ASD within 

the first 2 years of life. 

• Two-fifths of school-aged CSHCN with ASD were aged 6 years and over when first identified 

as having ASD. 

CSHCN are identified as having ASD by a range of health care providers. 

• School-aged CSHCN identified as having ASD before age 5 years were most often 

identified by generalists (such as pediatricians, family physicians, and nurse practitioners) and 

psychologists.

• Relative to those school-aged CSHCN identified at age 5 years and over, those identified 

as having ASD before age 5 years were more likely to be identified by generalists, specialist 

pediatricians, neurologists, and multidisciplinary teams.

• School-aged CSHCN identified as having ASD at age 5 years and over were identified 

primarily by psychologists and psychiatrists. Percent

0

20

40

60

80

100

CSHCN were aged 0–4 years

when parent was first told

child had ASD

CSHCN were aged 5 years

and over when parent was

first told child had ASD

Generalist1

Psychologist (includes 

school psychologists)1

Other health care

provider

Developmental pediatrician or

other specialist pediatrician1

Neurologist1

Multidisciplinary team1

Psychiatrist1

18.3 16.3

8.2

14.7

7.0

12.4

3.5

8.7 23.9

7.9

19.5

12.4

28.8

18.5

Figure 2. Percent distribution of type of doctor or health care provider who first told parent or guardian that child had 

autism spectrum disorder, by child's age when parent or guardian was first told, among children aged 6–17 years with 

special health care needs and autism spectrum disorder: United States, 2011

1

Indicates a statistically significant difference (p < .05) between age groups.

NOTES: Access data table for Figure 2 at: http://www.cdc.gov/nchs/data/databriefs/db97_tables.pdf#2. CSHCN is children with special health care needs. 

ASD is autism spectrum disorder.

SOURCE: CDC/NCHS, Survey of Pathways to Diagnosis and Services, 2011.
NCHS Data Brief ■ No. 97 ■ May 2012

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Just over one-half of school-aged CSHCN with ASD use three or more 

health care services to meet their developmental needs.

• Across both age groups, approximately 9 out of 10 CSHCN with ASD use one or more of the 

eight services included in the Pathways survey. 

• Younger CSHCN with ASD are more likely than older CSHCN with ASD to use any of these 

eight services and to use three or more of these services.

• The most commonly used services are social skills training and speech or language therapy for 

both age groups. 

• About 40% of school-aged CSHCN with ASD use behavioral intervention or modification 

services to meet developmental needs.

• Younger CSHCN with ASD are more likely than older CSHCN with ASD to use occupational 

therapy and speech or language therapy to meet their developmental needs. Percent

0

20

40

60

80

100 Age 6–11 years Age 12–17 years

Behavioral

intervention or

modification

Occupational

therapy1

Social skills

training

Speech or

language

therapy1

At least one of

eight health care

services (see

"Definitions")1

Three or more

health care

services (see

"Definitions")1

Figure 3. Percentage of children aged 6–17 years with special health care needs and autism spectrum disorder who 

currently use selected health care services, by age: United States, 2011

40.2

51.3

60.1

68.4

91.1

61.0

38.9

32.1

57.3

44.9

84.2

47.0

1

Indicates a statistically significant difference (p < .05) between age groups.

NOTE: Access data table for Figure 3 at: http://www.cdc.gov/nchs/data/databriefs/db97_tables.pdf#3.

SOURCE: CDC/NCHS, Survey of Pathways to Diagnosis and Services, 2011.
NCHS Data Brief ■ No. 97 ■ May 2012

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More than one-half of school-aged CSHCN with ASD use one or more 

psychotropic medications to meet their developmental needs.

• More than one-half of school-aged CSHCN with ASD use at least one psychotropic medication 

to meet their developmental needs. 

• Almost one-third of school-aged CSHCN with ASD use stimulant medications, one-quarter use 

anti-anxiety or mood-stabilizing medications, and one-fifth use antidepressants.

31.6

25.6

20.1 19.4

14.0

8.2

56.0

Percent

0

10

20

30

40

50

60

Any of these

medications

Antiseizure

medication

Antipsychotic

medication

Sleep

medication

Antidepressant

medication

Anti-anxiety

or moodstabilizing

medication

Stimulant

medication

Figure 4. Percentage of children aged 6–17 years with special health care needs and autism spectrum disorder who 

currently use selected medication types: United States, 2011

NOTE: Access data table for Figure 4 at: http://www.cdc.gov/nchs/data/databriefs/db97_tables.pdf#4.

SOURCE: CDC/NCHS, Survey of Pathways to Diagnosis and Services, 2011.
NCHS Data Brief ■ No. 97 ■ May 2012

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Summary

This report describes school-aged CSHCN with ASD, looking at when they were reported to be 

first identified as having ASD, who made the identification, and the services and medications 

they currently receive to meet their developmental needs. Early identification is an important 

first step toward making sure that children with ASD and their families are able to access and 

benefit from early intervention, which has been associated with positive developmental outcomes 

(5–7). Among school-aged CSHCN with ASD, a majority were aged 5 years and over when they 

were first identified as having ASD, while only one in five was identified as having ASD within 

the first 3 years of life. A wide range of health care providers—including general and specialist 

physicians, mental health specialists, and others—were the first professionals to identify CSHCN 

as having ASD. A majority of CSHCN recognized as having ASD at age 5 years and over 

were identified by psychologists and psychiatrists, whereas no one type of health care provider 

identified more than 20% of CSHCN recognized as having ASD before age 5 years.

Most families use a combination of services to address the developmental needs of their CSHCN 

with ASD. Social skills training and speech or language therapy are the most commonly used, 

followed by occupational therapy. Twelve percent of CSHCN with ASD do not use any of the 

eight services included in the survey, whereas fewer than one-half use behavioral intervention 

or modification services, the most well-established and efficacious intervention for ASD (2,8,9). 

Younger CSHCN with ASD are more likely than older CSHCN with ASD to use any services and 

multiple services, in part because they are more likely to use occupational therapy and speech or 

language therapy to meet their developmental needs. More than one-half of school-aged CSHCN 

with ASD use at least one psychotropic medication, with stimulants being the most common. 

Medication use spans a variety of medication classes, perhaps reflecting treatment of co-occurring 

symptoms or absence of clear practice guidelines for psychotropic medication use in children 

with ASD (10).

Definitions

Children with special health care needs (CSHCN): The National Survey of CSHCN (NS-CSHCN) 

used the CSHCN Screener (11) to identify CSHCN. This screener uses the health consequences 

that children experience as criteria for identifying special health care needs, rather than just 

specific diagnoses or health conditions.

Autism Spectrum Disorder (ASD): CSHCN were first identified as ever having or currently 

having ASD based on two questions on the NS-CSHCN: 1) “Has a doctor or other health care 

provider ever told you that [the child] had autism, Asperger’s disorder, pervasive developmental 

disorder, or other autism spectrum disorder?” and 2) “Does [the child] currently have autism or 

an autism spectrum disorder?” When recontacted to participate in the Pathways survey, parents 

or guardians were asked to confirm if their child ever had autism or ASD. If yes, they were then 

asked, “To the best of your knowledge, does [the selected child] currently have autism or an 

autism spectrum disorder.” This analysis is based on those CSHCN who were identified in the 

Pathways survey as currently having ASD.

Health care professional: Respondents were asked, “What type of doctor or other health care 

provider first told you that [the selected child] had autism or autism spectrum disorder?” 

Physician types were categorized as follows: 1) Pediatricians, family practice doctors, or other 
NCHS Data Brief ■ No. 97 ■ May 2012

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providers in general practice, which includes pediatric or family practice nurse practitioners, 

or physician’s assistants; 2) developmental pediatricians or other specialist pediatricians; 3) 

psychologists, including school psychologists or councilors; 4) psychiatrists (medical doctors); 5) 

neurologists; 6) a team of professionals or multidisciplinary team; and 7) specialist doctors (other 

than developmental pediatricians, psychiatrists, or neurologists) and other health care providers 

(i.e., school nurses; physical, occupational, speech, or other therapists; etc.). 

Health care services: The Pathways survey asked about the following eight health care services: 

behavioral intervention or modification services; sensory integration therapy; cognitive based 

therapy; school-based occupational therapy or other occupational therapy; school-based physical 

therapy or other physical therapy; school-based social skills training or other social skills training; 

school-based speech or language therapy or other speech or language therapy; and alternative 

health care or treatment. For each selected service, parents or guardians were asked whether or 

not their child ever used the service to meet [his/her] developmental needs, and if so, whether the 

child currently uses the service on a regular basis.

Medication use: To determine what medication the child currently uses, the parent or guardian 

was asked to report “whether or not the child ever used this type of medication to meet [his/her] 

developmental needs,” and if so, whether the child currently uses the medication. Each type of 

medication was asked about separately. Specific medication names were not solicited, but if the 

parent knew the name of the drug but not the type, the interviewer could refer to a list of drug 

names matched to type of medication.

Data sources and methods

The Survey of Pathways to Diagnosis and Services is a nationally representative survey about 

children with special health care needs (CSHCN) aged 6–17 years ever diagnosed with autism 

spectrum disorder (ASD), intellectual disability, or developmental delay. The survey and this 

report are part of the Pathways to Diagnosis and Services Study, which was sponsored and co-led 

by the National Institute of Mental Health, using funds available from the American Recovery 

and Reinvestment Act of 2009.

Parents or guardians who previously participated in the 2009–2010 NS-CSHCN (sponsored by 

the Maternal and Child Health Bureau) and who reported that their child had ever been diagnosed 

with at least one of the three selected developmental conditions were recontacted via landline 

or cell telephone to participate in the Pathways survey. To be eligible, the CSHCN had to be 

aged 6–17 years at the time of the Pathways interview and still living in the same household 

as the recontacted parent or guardian. Of the parents or guardians with eligible CSHCN, 71% 

were successfully recontacted and 87% agreed to participate. A total of 4,032 interviews were 

completed from February–May 2011, an average of 9 months after the initial interview. This 

report presents selected measures of diagnostic history and health care experience for the 

1,420 CSHCN who were reported to have an ASD at the time of the Pathways interview. (See 

“Definitions” for question wording.) All estimates shown in this report are weighted to produce 

national estimates representative of the noninstitutionalized population of U.S. CSHCN with ASD 

as estimated from the 2009–2010 NS-CSHCN. The NS-CSHCN response and realization rates 

were about 25%; unpublished analyses suggest no significant nonresponse bias in estimates of 

the prevalence or characteristics of CSHCN with ASD. For more information about the Pathways 

survey, including questionnaire content, please visit: http://www.cdc.gov/nchs/slaits/spds.htm.
NCHS Data Brief ■ No. 97 ■ May 2012

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About the authors

Beverly Pringle and Lisa Colpe are with the National Institutes of Health’s National Institute 

of Mental Health, Division of Services and Intervention Research. Stephen Blumberg and Rosa 

Avila are with the Centers for Disease Control and Prevention’s National Center for Health 

Statistics, Division of Health Interview Statistics. Michael Kogan is with the Health Resources 

and Services Administration’s Maternal and Child Health Bureau, Office of Epidemiology and 

Research.

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NCHS Data Brief ■ No. 97 ■ May 2012

Suggested citation

Pringle BA, Colpe LJ, Blumberg SJ, Avila 

RM, Kogan MD. Diagnostic history and 

treatment of school-aged children with 

autism spectrum disorder and special 

health care needs. NCHS data brief, no 97. 

Hyattsville, MD: National Center for Health 

Statistics. 2012.

Copyright information

All material appearing in this report is in 

the public domain and may be reproduced 

or copied without permission; citation as to 

source, however, is appreciated.

National Center for Health 

Statistics

Edward J. Sondik, Ph.D., Director

Jennifer H. Madans, Ph.D., Associate 

Director for Science

Division of Health Interview Statistics

Jane F. Gentleman, Ph.D., Director

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