Access to Diagnosis and Intervention Among Illinois Children with Autism Spectrum Disorder

Background and Purpose: The number of children diagnosed with Autism Spectrum Disorder (ASD) has grown at a striking rate. Researches have shown that early detection, treatment and services are crucial in advancing outcomes and reducing symptoms. Center for Disease Control’s report on ASD was based on 11 states, which does not include the State of Illinois. Little is known about the experiences and the needs of families in Illinois. Thus, the purpose of this study is to answer the following questions:

1. What was the age when parents first noticed something different in their child, when parents talked to a physician about it, when their child got the final diagnosis of ASD?
2. Does the age of notice, talking with a physician, and getting final diagnosis differ by the severity of child’s Autism?
3. Does service utilization differ by the severity of child’s Autism?

Methods:  A survey was developed based on previous studies on access to diagnosis and treatment. 117 parents of children with ASD who are under the age of 18 completed the survey. The sample is predominantly female (96%), White (92%), and middle/middle upper class (median annual household income was $85,000). 44% children in this sample were reported to require substantial report.

The survey was promoted both online and by in person outreach to different communities in Illinois. The online link of the survey was promoted through email list, passed on to providers and resource centers, and online parent groups in Illinois. The paper survey was delivered in person or via mail to multiple parent support groups in Chicagoland area.

Findings:We found that children in Illinois were diagnosed at the age of 56 months on average, even though parents first talked to a health care provider about their child’s development at 24 months, which is 2 months after they first noticed something different (22 months). The age of first notice and diagnosis is significantly different by the severity of the child’s autism. Children who require substantial support, on average, get their diagnosis at the age of 38 months. Whereas, children who require some or no support get their diagnosis at the age of 68 months. There are also significant differences in terms of service utilization when categorized by the severity of autism. Services like Early Intervention, Applied Behavior Analysis, Speech Therapy and Occupational Therapy are utilized more by children who require substantial support.

Conclusion: It is noteworthy that this sample of families’ income is significantly higher than the median household income of Illinois. Relatively privileged, children in these families were still diagnosed at a later age, though ASD can be diagnosed as early as age 2 years. Furthermore, there is a significant gap (22months) between parent first bringing up their concerns to a clinician and the final diagnosis. Given the importance of early diagnosis and treatment, these findings suggest strategies specific for reducing the amount of time from when parents first bringing up their concerns and the diagnosis, especially for children who do not require a substantial support.