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Pathways to Early Autism Diagnosis and Intervention

Maria I. Martinez, PhD1,2, Kathleen Thomas, PhD2, Rob Christian, MD1, Rebecca Edmondson Pretzel, PhD 1 & Stephen R. Hooper, PhD1
1Carolina Institute for Developmental Disabilities, University of North Carolina, Chapel Hill; 2Sheps Center for Health Service Research
This research was made possible by a State Implementation Grant sponsored by the Maternal and Child Health Bureau, DHHS (MCH Grant No. H6MMC26248) and was partially supported by a National Research Service Award Post-Doctoral
Traineeship from the Agency for HealthCare Research and Quality sponsored by The Cecil G. Sheps Center for Health Services Research, The University of North Carolina at Chapel Hill, Grant No. 5T32-HS000032.

OBJECTIVE

SUMMARY

RESULTS

The purpose of this study is to identify pathways associated with early


screening, assessment and intervention that can be utilized to develop a
system of service that provides early intervention for autism spectrum
disorders (ASD) and other developmental disabilities in order to facilitate
childrens ability to reach their maximum potential. The target audience
includes researchers, stakeholders and policy makers.

Early recognition is associated with ASD presentations with lower


levels of functioning (p < .005), fewer number of providers parents
reported sharing concerns with before receiving an initial ASD
diagnosis (p < .005), and type of providers (team vs. individual in
private practice) conducting initial autism assessment (p < .05).

Pathways Model
(n=409)
Recogni(on:
Concerns rst recognized by
Parent versus Pediatrician?

Who first recognized developmental concerns (parent or provider)


was associated with whether parents reported completing an autism
screener at their doctors office (p < .01) and minority child race/
ethnicity (p <.05), with parents less likely to report first recognizing
concerns if they completed a screener or endorsed minority child
background.

Provider
10% (n=42)

Parent
90% (n=362)

BACKGROUND
Families of children with an ASD have more difficulty accessing and using
services compared to families with children with other mental health care needs
(Vohra, Madhavan, Sambamoorthi & St. Peter, 2014). The Autism CARES Act of
2014 introduced legislation to reduce barriers to screening, diagnosis and
treatment however little is known about pathways that lead to earlier diagnosis
and intervention. The Anderson model of health care utilization (Aday &
Anderson, 1975) provides a framework to organize and examine factors
associated with earlier access to autism services.

Time to Diagnosis:
Quick versus Long?

Quick 57%
(n=207)

METHODS

Percentile

Mean(SD)

Race
White
Black
Asian
American Indian
Other Race
Ethnicity
Hispanic
Primary Language Spoken at Home
English
Spanish
Other

Early 0%

Late 100%
(n<5)

CONCLUSIONS

Variables in Model

Early
Who First
Recognition Recognized

Time to
Diagnosis

Early
Intervention

Who recognized concerns first


(parent vs. provider)

***

***

**

Type of Provider (1st ASD diagnosis)

***
*

Minority Child

*
***
*

Parents who recognized concerns early were more likely to enter a


pathway to earlier child diagnosis and intervention, particularly in
cases of prompt initial diagnosis. This appears to be associated with
type of provider conducting initial autism assessment and severity of
child functioning, reflecting quicker pathway entry for families who
are swiftly connected with specialists as well as autism presentations
with greater functional impairment or that are easier to identify.
When providers initially recognized developmental concerns, families
were more likely to enter a pathway to quicker diagnosis and earlier
intervention.

It is important for policy makers to support and increase:

Maternal Education
89%
9%
2%

Child Age When First Recognized Concerns


Screened for ASD

Late 26%
(n=10)

Late 62%
(n=102)

Early diagnosis was associated with fewer number of providers


parents shared concerns with prior to ASD diagnosis (p < .001),
autism screening (p < .05), type of provider (p < .05), and ASD
presentation with lower functioning (p < .001).
Early intervention was associated with type of providers conducting
initial autism assessment (p < .05) and ASD presentations with lower
functioning (p < .05).

Logit Models of Family Characteristics Associated with Concerns, Diagnosis & Service Use

Number of Providers Visited

13%

Long 5%
(n<5)

In most cases parents were aware of child developmental concerns


before providers, months before receiving an initial diagnosis, and
even after consulting with multiple providers, suggesting these are
potential pathway areas to improve. Strategies should target early
caregiver recognition and follow-up on child development concerns.

ASD Screen

78%
13%
3%
1%
5%

Early 74%
(n=28)

Late 38%
(n=63)

Early 27%
(n=50)

Data from the 2014-2015 North Carolina Needs of Young Children with Autism
Survey are presented. Descriptive statistics and logit modeling analyzed deidentified information families provided about demographic, diagnostic and
service use history using the Anderson health care utilization framework.
Pathways to early intervention as well as models predicting of age of first
concerns, who first recognized concerns, time to diagnosis, and age of first
intervention are presented.

Sample Characteristics (n=409)

Quick 95%
(n=40)

Age of First Interven(on:


Early versus Late?
Early 73%
(n=134)

Inclusion Criteria:
Ability to consent to study
Parent of a child <9 years of age diagnosed with autism in NC

Long 43%
(n=155)

autism awareness among parents and providers

Siblings w/ASD
HFA (vs. other ASD)
21.22(12.82)

40%

***

***

Distance to travel
Note: * p < .05, ** p < .01, p < .005

Child Age at Initial Diagnosis

39.09(16.79)

Number of Providers Visited

3.63(1.48)

Number of Siblings w/ASD

1.10(0.42)

routine autism screening and follow-up after concerns


initially emerge, particularly for minority children

Correspondence: maria.martinez@unc.edu
Poster Presented at the Autism CARES Conference, July 16, 2015, Bethesda, MD

strategies to improve provider recognition for minority


and higher functioning children
availability of specialized ASD team-based providers
and specialists trained to conduct early diagnostic
assessments