Children referred with concerns for an ASD: A DBPNet study

1 2 3 2 4 5
Pamela High , Ellen Silver , Nancy Ruth Roizen ,
Marilyn Stein , Augustyn , Nathan Blum ,
and the DBPNet Steering Committee
1Brown U; 2Albert Einstein; 3Case Western, 4Boston U and 5CHOP
DBPNet is supported by the Health Resources and Services Administration (HRSA) of the U.S.
BACKGROUND Sample Characteristics What was reviewed, discussed and/or performed at this DBP visit? Department of Health and Human Services (HHS) under cooperative agreement UA3MC20218
(Autism Intervention Research Networks). The information, content and/or conclusions are those of
ASD+ (n=221) NonASD (n=103) p-value
The number of children referred and diagnosed with an Mean Child Age in years (sd) 4.81 (3.56) 5.57 (3.28) n.s.
ASD+ (n=221) NonASD (n=103) p-value the author and should not be construed as the official position or policy of, nor should any
endorsements be inferred by, HRSA, HHS or the U.S. Government.
Autism Spectrum Disorder (ASD) is increasing, making Male 82% (182) 86% (89) n.s. Medical records 73% (162) 74% (76) n.s.
up a larger proportion of referrals to Developmental- Race/Ethnicity:
White, non-Hispanic 43% (91) 54% (54) n.s.
Subspecialist Reports 44% (98) 39% (40) n.s.
What further evaluation was ordered at this initial DBP
Psychopharmacologic Treatment 20% (45) 24% (25) n.s.
Behavioral Pediatricians (DBP) for evaluation. Black, non-Hispanic 20% (42) 13 % (13) Past Medical History 98% (216) 97% (100) n.s. visit with the child?
Hispanic 23% (49) 25% (25)
OBJECTIVES Asian/Pacific Islander 10% (22) 5% (5)
Family History
Developmental History
97% (215)
99% (218)
97% (100)
97% (100)
n.s.
n.s.
ASD+ (n=221) NonASD (n=103) p-value

1. Determine the proportion of children referred to DBPs Other/mixed

Insurance:
5% (10) 4% (4)
Social/Educational History 99% (219) 99% (102) n.s. IFSP/IEP/Report Card/Teacher report 8% (18) 11% (11) n.s.
that have concerns for ASD Medicaid/CHIP/SCHIP 52% (107) 49% (48) n.s. Physical Exam 98% (217) 98% (101) n.s.
Teacher Behavior Rating Scale 8% (18) 9% (9) n.s.
2. The proportion of these who ultimately receive an Private 42% (86) 45% (44) Neurological Exam
Developmental/Behavioral Observation
97% (214)
99% (219)
98% (101)
96% (99)
n.s.
n.s. Parent Behavior Rating Scale 6% (13) 4% (4) n.s.
Military 2% (4) 3% (3)
ASD diagnosis Self Pay 2% (4) 1% (1) IFSP/IEP/Report Card/Teacher report 59% (130) 46% (50) n.s. Patient/Self Behavior Rating Scale 1% (1) 1% (1) n.s.
3. Whether socio-demographic factors, sources of More than one/other 3% (6) 2% (2) Teacher Behavior Rating Scale 36% (79) 39% (40) n.s.
Genetic Testing 34% (76) 10% (10) p<0.001
referral, and reasons for referral can predict an ASD Primary Caregiver Education
<High School 9% (16) 8% (6) n.s.
Parent Behavior Rating Scale
Patient/Self Behavior Rating Scale
63% (140)
7% (16)
65% (67)
5% (5)
n.s.
n.s.
EEG 2% (4) 0% (-) n.s.
diagnosis in ASD referrals High School/GED 23% (42) 17% (13) Genetic Testing 25% (55) 15% (15) p<0.05 Neuroimaging 1% (1) 1% (1) n.s.
4. Compare evaluation, treatment, and ultimate Some College 24% (44) 30% (23) EEG 8% (17) 5% (5) n.s. Metabolic Testing 1% (3) 0% (-) n.s.
diagnoses between ASD+ and non ASD children College graduate
>College graduate
24% (44)
22% (46)
32% (24)
13% (10)
Neuroimaging 9% (20) 9% (9) n.s. Speech/Language Eval by SPL 17% (38) 20% (21) n.s.
Metabolic Testing 4% (9) 1% (1) n.s.
Language(s) spoken in homea Audiologic Testing by SPL/Aud 25% (56) 15% (15) p<0.05
METHODS Speech/Language Eval by SPL 34% (75) 32% (33) n.s.
Physical Therapy Eval by PT 3% (8) 2% (2) n.s.
English 93% (206) 94% (97) n.s. Audiologic Testing by SPL/Aud 29% (64) 19% (20) n.s.
56 DBPs at 12 academic medical centers in the DBPNet Spanish 13% (29) 15% n.s. Physical Therapy Eval by PT 6% (13) 8% (8) n.s. Occupational Therapy Eval by OT 8% (18) 10% (10) n.s.
research network recorded de-identified data on < 15 Other 18% (40) 7% (7) p<0.01 Occupational Therapy Eval by OT 16% (36) 18% (19) n.s. Ophthalmology Evaluation 6% (13) 4% (4) n.s.
Referral Source(s)b
consecutive new patients in 2013-2014. They coded the Primary care provider 65% (144) 75% (77) n.s.
Ophthalmology Evaluation 5% (11) 10% (10) n.s.
Directly admin standardized 6% (14) 5% (5) n.s.
suspected diagnosis at the end of the first visit with the Specialist 9% (20) 7% (7) n.s.
Directly admin standardized developmental testing by DBP
Psychological tests by non-DBP
46% (101)
42% (93)
43% (44)
50% (51)
n.s.
n.s.
developmental testing by DBP

child present. Children referred for an ASD who were School/Early Intervention
Parent (self-referral)
12% (26)
22% (49)
7% (7)
10% (10)
n.s.
p<0.01 Counselor/therapist/soc wk Eval 12% (27) 14% (14) n.s.
Psychological tests by non-DBP 15% (33) 14% (14) n.s.

diagnosed with an ASD were compared to those who Mean weeks of waiting time for 21.46 weeks 27.18 weeks Counseling by DBP 39% (87) 46% (47) n.s. Counselor/therapist/soc wk Eval 10% (23) 6% (6) n.s.
p<0.05
were not. Each diagnosis was coded as suspected, appointment (sd)c (sd=19.75) (sd=20.37) Other 4% (8) 4% (4) n.s. Other 5% (11) 2% (2) n.s.

provisional, or confirmed all 3 were combined as

DIAGNOSED in this presentation. a Columns do not sum to 100% because caregiver may speak multiple languages
Suspected-Provisional-Confirmed Diagnoses for children referred with ASD concern
b Columns do not sum to 100% because provider may have indicated multiple referral sources Children younger than 4 with ASD concern Children 4 and older with ASD concern
All Children with ASD referral concern (n=324)
ANALYSIS c 30% (n=96) of encounters did not include wait time

Suspected-Provisional-Confirmed p- value
(n=145)
p- value-
(n=179)
p-value
1. Chi square tests compared children referred with a Additional reasons for referral for DBP evaluation Diagnoses
ASD+
(n=221)
NonASD
(n=103)
p-value site
ASD+ NonASD
(n=111) (n=34)
p-value site
ASD+ NonASD
(n=110) (n=69)
p-value site-
concern for ASD who were ASD+ = Diagnosed with ASD+ (n=221) NonASD (n=103) p-value-site adjusted adjusted adjusted adjusted
Abuse/Neglect/Foster care 0% (-) 4% (4) p=0.0003 n.s. 0% (-) 0 % (-) n.s. n.s. 0% (-) 6% (4) p=.011 n.s.
ASD v nonASD = Not Diagnosed with ASD Motor Delay
Speech/language delay
7 (16)%
55% (121)
11% (11)
47% (48)
n.s.
n.s. ADD/ADHD 22% (49) 43% (44) p<0.0001 p<0.001 4% (4) 9% (3) n.s. n.s. 41% (45) 59% (41) p=.016 p=.025
2. Logistic regression predicting ASD+ status included Cognitive/intellectual delay
Socialization delay
30% (66)
41% (90)
24% (25)
18% (18)
n.s.
p<0.001
Adjustment Reaction
Anxiety/Selective Mutism
2% (4)
9% (20)
4% (4)
25%
n.s.
p<0.0001
n.s.
p=0.001
0% (-)
0% (-)
9% (3)
9% (3)
p=0.02
p=0.02
n.s.
n.s.
4% (4) 1% (1) n.s.
18% (20) 33% (23) p=.002
n.s.
(p=0.055)
age, race, gender, insurance type, sources of and Repetitive behaviors/tics 19% (42) 15% (15) n.s. Attachment Disorder 1% (1) 1% (1) n.s. n.s. 1% (1) 0% (-) n.s. n.s. 0% (-) 1% (1) n.s. n.s.
reasons for referral, and site Syndrome (e.g. Down) 1% (1) 2% (2) n.s. Cognitive Delay/Intellect Disability 44% (96) 29% (29) p=0.008 p=0.025 46% (51) 18% (6) p=0.003 p=0.021 41% (45) 32% (22) n.s. n.s.
Adoption/foster care 0% 3% (3) p<0.05a Conduct disorder 1% (2) 2% (2) n.s. n.s. 0% (-) 3% (1) n.s. n.s. 2% (2) 1% (1) n.s. n.s.
RESULTS Aggression, ODD, Conduct 16% (36) 18% (18) n.s. Congenital Anomaly 2% (5) 2% (2) n.s. n.s. 1% (1) 3% (1) n.s. n.s. 4% (4) 1% (1) n.s. n.s.
Anxiety/depression/mood 7% (16) 8% (8) n.s. Constipation/Encopresis 5% (11) 7% (7) n.s. n.s. 1% (1) 6% (2) n.s. n.s. 9% (10) 7% (5) n.s. n.s.
1. 41% of DBP referrals had concerns for an ASD Attention/hyperactivity 27% (59) 37% (38) p=0.036 CP/Spasticity 1% (2) 1% (1) n.s. n.s. 1% (1) 0% (-) n.s. n.s. 1% (1) 1% (1) n.s. n.s.
2. 68% of those with an ASD concern were diagnosed Other behavior problem 7% (16) 18% (18) p=0.002 Depression
Enuresis/wetting/toileting delay
2% (4)
4% (8)
3% (3)
7% (7)
n.s.
n.s.
n.s.
n.s.
1% (1)
1% (1)
0% (-)
1% (1)
n.s.
n.s.
n.s.
n.s.
3% (3)
6% (7)
4% (3)
9% (6)
n.s.
n.s.
n.s.
n.s.
Chronic illness 3% (6) 1% ()1 n.s.
with an ASD77% if under 4; 62% if 4 or older p<0.01 Eating/feeding problem 8% (17) 3% (3) n.s. Externalizing/tantrums/aggression 12% (27) 16% (16) n.s. n.s. 6% (7) 12% (4) n.s. n.s. 18% (20) 17% (12) n.s. n.s.
3. Logistic Regression predicting ASD+: R2 = 0.29 Elimination problem
Neonatal Follow-up
3% (6)
0%
4% (4)
0%
n.s.
n.s.
FTT/Disordered Eating/Pica
Genetic Disorder
7% (15)
8% (17)
5% (5)
8% (8)
n.s.
n.s.
n.s.
n.s.
9% (10) 9% (3)
7% (8) 6% (2)
n.s.
n.s.
n.s.
n.s.
5% (5)
8% (9)
3% (2)
9% (6)
n.s.
n.s.
n.s.
n.s.
Socialization concern (aOR 4.24; p<0.0001) Obesity 2% (5) 1% (1) n.s. Hearing Loss 1% (2) 2% (2) n.s. n.s. 2% (2) 6% (2) n.s. n.s. 0% (-) 0% (-) n.s. n.s.

Second opinion (aOR 8.83, p=0.015) School/learning problems

Sensory deficit
9% (20)
1% (2)
17% (17)
0%
(p=0.052)
n.s.
Learning Disability w/ nl cognition
Macrocephally
5% (10)
6% (14)
15% (15)
5% (5)
p=0.002
n.s.
p=0.003
n.s.
0% (-)
6% (7)
0% (-)
6% (2)
n.s.
n.s.
n.s.
n.s.
9% (10) 22% (15) p=0.018 p=0.037
6% (7) 4% (3) n.s. n.s.
No other behavior concerns (aOR 0.28, p=0.007) Sleep Problem 9% (19) 11% (11) n.s. Microcephally 1% (3) 2% (2) n.s. n.s. 2% (2) 3% (1) n.s. n.s. 1% (1) 1% (1) n.s. n.s.
Metabolic disorder 1% (3) 1% (1) n.s. n.s. 3% (3) 3% (1) n.s. n.s. 0% (-) 0% (-) n.s. n.s.
No Learning concerns (aOR 0.43, p=0.07) Toxic exposure
Trauma - physical
0%
0%
2% (2)
0%
n.s.
n.s. Motor delay/hypotonia 13% (29) 19% (20) n.s. n.s. 15% (17) 21% (7) n.s. n.s. 11% (12) 19% (13) n.s. n.s.
Self referral (aOR 2.4, p=0.085) Second opinion 8% (17) 2% (2) p=0.05 Motor tics/stereotopies 8% (17) 12% (12) n.s. n.s. 7% (8) 6% (2) n.s. n.s. 8% (9) 15% (10) n.s. n.s.
Other reason 5% (11) 7% (7) n.s. Obesity/overweight 8% (17) 5% (5) n.s. n.s. 2% (2) 3% (1) n.s. n.s. 14% (15) 6% (4) n.s. n.s.
4. Evaluations for ASD+ and nonASD children were Mean number of reasons child was n.s. Obsessive Compulsive Disorder 0% (-) 2% (2) n.s. n.s. 0% (-) 0% (-) n.s. n.s. 0% (-) 3% (2) n.s. n.s.
3.56(1.99) 3.45 (1.685)
similarly extensive. More ASD+ children were referred for referred (sd) Oppositional Defiant Disorder 1% (1) 3% (3) n.s. n.s. 0% (-) 0% (-) n.s. n.s. 1% (1) 4% (3) n.s. n.s.
Parental prob. (e.g., depression) 6% (14) 6% (6) n.s. n.s. 6% (14) 6% (6) n.s. n.s. 6% (6) 6% (4) n.s. n.s.
hearing and genetic tests. More ASD+ children were a Unable to
Parenting problem (limit setting) 1% (3) 7% (7) p=0.009 p=.019 0% (-) 0% (-) n.s. n.s. 3% (3) 10% (7) p=.037 p=.045
compute due to cell with 0 but was <0.05 without site correction
receiving or referred for Special Education/EI, ABA, social Prematurity (<1500 gm)
PTSD
1% (3)
1% (1)
1% (1)
3% (3)
n.s.
(p=0.062)
n.s.
n.s.
1% (3)
0% (-)
1% (1)
0% (-)
n.s.
n.s.
n.s.
n.s.
0% (-)
1% (1)
1% (1)
4% (3)
n.s.
n.s.
n.s.
n.s.
skills training, parent support, and augmentative Treatments the child is either already receiving or is recommended Safety concern 4% (10) 1% (1) n.s. n.s. 3% (3) 0% (-) n.s. n.s. 6% (7) 1% (1) n.s. n.s.
communication. Overall >85% were scheduled for DBP at this visit and follow-up plan
Seizure disorder
Sleep disturbance
3% (7)
15% (33)
3% (3)
22% (23)
n.s.
n.s.
n.s.
n.s.
1% (1) 3% (1)
11% (12) 18% (6)
n.s.
n.s.
n.s.
n.s.
6% (6) 3% (2)
19% (21) 25% (17) n.s.
n.s. n.s.
n.s.
follow-up. ASD+ (n=221) NonASD (n=103) p-value Speech/Language Disorder/Delay 53% (116) 57% (59) n.s. n.s. 58% (64) 74% (25) p=0.096 p=0.019 47% (52) 49% (34) n.s. n.s.
CONCLUSIONS Stimulant Medication
Alpha Agonist Medication
11% (25)
5% (11)
19% (20)
9.7% (10)
(p=0.058)
n.s.
Tech dependent 1% (1) 0% (-) n.s. n.s. 1% (1) 0% (-) n.s. n.s. 0% (-) 0% (-) n.s. n.s.
Teratogen exposed 1% (2) 0% (-) n.s. n.s. 0% (-) 0% (-) n.s. n.s. 2% (2) 0% (-) n.s. n.s.
Only 2 in 3 children referred with an ASD concern were Antidepressant Medication 1% (2) 0% (-) n.s. Vision impairment 2% (4) 2% (2) n.s. n.s. 1% (1) 0% (-) n.s. n.s. 3% (3) 3% (2) n.s. n.s.
diagnosed with or suspected of having an ASD. Those Atypical Antipsychotic Medication 5% (12) 5% (5) n.s. Other Diagnosis 10% (21) 13% (13) n.s. n.s. 13% (14) 21% (7) n.s. n.s. 8% (9) 9% (6) n.s. n.s.
Melatonin 8% (17) 8% (8) n.s. Total # of diagnoses1 3.79 3.48 n.s. n.s. 3.34 2.98 n.s. n.s. 4.20 3.91 n.s. n.s.
without an ASD were not easily distinguished at the time Other diet supplement or med 5% (11) 10% (10) n.s.
of their referral, though they had less socialization Early Intervention/Special Education 81% (179) 59% (61) p<0.0001
concern and more concern for other behaviors. OT/PT/Speech & Lang. Therapy
Classroom accommodations
81% (180)
36% (80)
72% (74)
46% (47)
n.s.
n.s.
1 Means adjusted for site

NonASD children younger than 4 had less cognitive Parenting/behavior management

Therapy/counseling
41% (91)
21% (46)
38% (39)
28% (29)
n.s.
n.s.
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45% (100)
6% (13)
31% (32)
4% (4)
p<0.05
n.s.
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