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Autism: Wide-ranging study reconfirms the need for care coordination

A study released on autism spectrum disorder (ASD) in the January issue of JAMA Psychiatry sheds new light on old knowledge – that individuals with ASD have a higher rate of co-occurring disorders than the general population.

However, the study raises the bar in two ways: 1) it draws on an unmatched amount of data – nearly 6 million people; and 2) provides greater insight into the association between pairs of conditions over time, in other words, when a condition is likely to appear after the diagnosis of ASD or any corresponding disorder.

In sync with April as National Autism Awareness Month, this study is the latest in reminding the health care community of the 360-degree needs of individuals with ASD and their families. How can we be sure these complex needs are met? In brief, the answer lies in ASD care coordination.

Study overview

Researchers from Denmark studied that country’s national registries from the 1960s for approximately 6 million people born between 1910 and 2015 and their mental health diagnoses. Outlining 10 broad areas of conditions, ranging from mood disorders to dementia, they then looked at the association between conditions over time. Further, the study provided a “comprehensive set of age- and sex-specific estimates of absolute risks associated with comorbid mental disorders.”

Generally, they learned that the diagnosis of one disorder increased the risk of a subsequent diagnosis with each of the other disorders. More specifically, the risk of a later disorder was most prominent in the first year after diagnosis of the prior one, but the risk persisted for at least 15 years.

How care coordination works for ‘Tom’

For Beacon Health Options (Beacon), the study doesn’t change what we consider to be fundamentally critical to the provision and management of ASD services – care coordination – which is at the heart of our Beacon Behavioral: Autism solution. The study simply but overwhelmingly strengthens the evidence base for that approach to address the needs of a population whose complexity requires services ranging from Applied Behavior Analysis (ABA) to advocacy to respite care. Real life paints the best picture of that complexity.

Consider “Tom”, who is 5 years old, recently diagnosed with ASD and soon thereafter a seizure disorder. He has two parents at home and an older brother with no special needs. Tom is generally a happy member of the family.

When Tom starts school, his parents notice a regression in his behavior; he withdraws more and communicates less and less. Additionally, his seizures seem more frequent and intense. Concerned, Tom’s parents contact Beacon’s board-certified behavior analyst (BCBA) care coordinator who takes the following steps.

1. The BCBA works with the ABA provider to amend Tom’s treatment plan to include more social-skills training after school and encourages the provider to connect with the school social worker who is the conduit for all school-related issues. She also recommends more family coaching in coping strategies to address possible behavior changes as Tom adjusts to school. 

2. She provides online resources that educate Tom’s parents about the challenges they can expect as Tom makes this transition.

3. She encourages the ABA provider to connect with Tom’s neurologist about the intensifying seizures and coordinates a neurology appointment so Tom can be seen as soon as possible.

4. She contacts the speech pathologist who may need to evaluate a higher frequency of visits.

5. Eight weeks later, after reviewing data from Beacon’s clinical portal, the BCBA reaches out to Tom’s parents to check-in on his progress. After learning about some challenges during this time of change, the care coordinator offers Beacon’s Family Support service to provide further resources.

Connecting the care dots delivers results

Over time, Tom and his family returned to being a happy family. Tom was making progress in school, learning new academic and social skills. Coaching helped his parents and older brother understand Tom’s behavior when it became difficult and taught them how to deal with it, which meant less family tension and stress. Now that Tom has less episodes at school that require a parent to bring him home, his mother has been able to start a part-time job.

The Danish study drives home the importance of vigilance in caring for individuals with ASD. PCPs and behavioral health providers alike must be mindful about diagnosing any developing disorders so they can be addressed quickly for the best possible outcomes. Beacon recognizes our own important role in driving the care coordination that makes this happen; providers are already stretched with the demands of providing direct services, billing and other administrative duties.

Honoring April as National Autism Awareness Month, we call upon all system stakeholders to recognize their roles in partnering, innovating and collaborating as we learn more and more about this highly complex disorder. We also encourage people to share their stories about autism, whether at the dinner table, a soccer game, at work or in the comments section below.

For more information about autism spectrum disorder and resources:

Autism Speaks Resource Guide: https://www.autismspeaks.org/resource-guide

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