Read Full Text: Disparities in diagnosis and treatment of autism in latino and non-latino white families
Journal: Pediatrics
Year Published: 2017
Ranked 32nd on our 2016-2021 list of the 100 Most Influential OT Research Articles
CEU Podcast: Disparities in Supports for Autism in Latino Families with Cristina Reyes Smith & Catherine Hoyt
Racial and ethnic health disparities have been heavy on our hearts over the past few years—and they should be.
We have much to reckon with, not only in terms of our own personal biases, but also regarding the structural inequities within healthcare.
In this week’s article, we’ll zoom in on one particular health disparity: autism diagnosis and treatment in Latino families. The authors shed light on the complex ways that disparities arise, and this information served as a jumping-off point for the podcast discussion with Catherine R. Hoyt, PhD, OTD, OTR/L and Cristina Reyes Smith, OTD, OTR/L.
While there is still plenty of work to be done, articles like this help us identify specific ways that patients are falling through the cracks of the healthcare system. And, most importantly, we’ll see how OTs can address these disparities so we can help patients get the care they deserve.
Let’s dive in.
A note on language
When I wrote this article summary, I really struggled with how to approach language and wording around race and ethnicity. I decided to reflect the recommendations from this updated guidance on reporting race and ethnicity from JAMA (the Journal of the American Medical Association).
An introduction to racial and ethnic disparities in autism care
We certainly know that racial and ethnic disparities exist in autism diagnosis and care. Yet, we don’t fully understand why these disparities exist—and we need to address the root cause in order to make things better.
The introduction of this article hits you with lots of past research takeaways, which provides context for understanding our current situation.
Here are some highlights.
What we know:
- Several studies have shown racial and ethnic disparities in autism spectrum disorder (ASD) diagnosis and treatment, particularly in Latino children
- ASD is diagnosed less often among Latino children compared to White children
- Latino children are diagnosed before the age of 4 less often than White children
- When autistic Latino children are diagnosed, they are more likely than White children to have severe presentations
- After diagnosis, autistic Latino children receive fewer evidence-based treatments than White children
Why early diagnosis matters:
Early diagnosis is key. Evidence suggests that prompt ASD diagnosis and treatment improves long-term developmental and family outcomes. So, when Latino families aren’t receiving the timely diagnoses and care that they need, we’re setting them up for further inequities as they move through the healthcare system.
What needs further exploration:
Ok…so, it is clear that disparities exist and need to be addressed. Unfortunately, research exploring the root causes of these exact disparities is more limited. However, broader research on health disparities has shown us that the causes are usually multifactorial.
Research has already shown us that:
- Providers are less likely to screen Spanish-speaking children for ASD versus English- speaking children
- Families that speak Spanish as their primary language receive less family-centered care than White families
- Commonly used ASD diagnostic tools may function differently when used with Latino clients
What is missing from this picture is how the families, themselves, perceive such barriers. (And, how such barriers to diagnosis and care impact the overall treatment course.) Which leads us to this paper…
Why was this paper written?
The authors’ intent was to contribute to the research by asking:
- How do self-reported barriers vary by both ethnicity and English proficiency?
- How were these barriers associated with the care that was provided?
What were the authors’ methods?
Parents were surveyed from 3 different ASD clinics in Los Angeles, Denver, and Portland.
All families had a child aged 2-10 who had an ASD diagnosis confirmed in the last 5 years.
The survey had 34 items related to:
- Potential barriers to ASD diagnosis and treatment
- Current therapy use
- Beliefs about autism
Results
352 families shared data via the survey. These responses were coded as:
- “Non-Latino white” (Or “White” by the new JAMA guidelines) (46%)
- “Latino English proficient” (27%)
- “Latino limited English proficiency” (27%)
The results were broken into 3 broad categories:
1. Barriers to ASD care
Both groups experienced a mean of 8 barriers of the 15 presented. What’s interesting is that the mean number of barriers was similar between all groups. Plus, there were quite a few similarities in which barriers the two groups noted.
Here are the pooled results from the groups, they indicate what percentage or respondents said they experienced the barrier:
Stress of diagnostic process - 75%
Parent knowledge about ASD - 71%
Understanding medical system - 66%
Knowing where to go for help - 63%
Provider thinking child’s behavior was problematic - 60%
Timeliness of ASD evaluation - 59%
Family members/elders thinking child’s behavior was problematic - 52%
Comfort of appointments for child - 52%
Help with care coordination - 51%
Providers giving useful information about ASD - 49%
Family travel for ASD evaluation - 45%
Spouse/partner thinking child’s behavior was problematic - 40%
Parent trust in providers - 39%
Cost of ASD evaluation - 25%
Parent thinking child’s behavior was problematic - 16%
Parent fear of asking for help due to legal issues - 9%
Availability of needed interpreters - 8%
Quality of needed interpreters - 7%
Providers thinking problems were due to non-English language - 5%
However, when the answers were sorted by the three groups in the study, there were a few differences that emerged.
- The most common barrier among White families was “stress of diagnostic process”
- The most common barrier among both Latino groups was “parent knowledge about ASD”
2. Treatment and unmet needs
Overall, there were a lot of similarities between the 3 groups, in terms of treatment use. (In OT use, for instance, there was no statistical difference between the 3 groups; all 3 groups received close to the same amount of OT care.)
However, 2 notable differences stood out as especially applicable to OTs:
- A significantly higher percentage of “Latino limited English proficiency” families reported unmet therapy needs (60% versus 40% for “White” families)
- A significantly higher percentage of “Latino limited English proficiency” families were likely to be in the lowest tier of hours of care (<1 or no hours)
3. Associations between barriers, treatment, and unmet needs
Here’s where the statistics get fancy. You’ll have to read the article for the full details, but basically, the results here indicated that even when families with limited English proficiency experienced the same number of barriers as the other groups, they still had worse outcomes. The authors found they were still more likely to be in the lowest tier of hours of care received (<1 or no hours), and they still had more unmet needs.
Authors’ discussion and conclusions
There was a lot to unpack in this study. The numbers showed that all surveyed families experienced substantial barriers to ASD diagnosis and care. And, interestingly enough, all experienced about the same number of barriers. But, Latino limited English proficiency families experienced these barriers disproportionately, leading to more unmet needs and fewer therapy hours.
Thus, the authors concluded that English proficiency was an important marker related to barriers to diagnosis and treatment.
The conclusion gives several good recommendations. I wanted to highlight these specific ones, which are relevant to therapy providers:
- Therapy providers in areas with large Latino populations should employ bilingual, multicultural staff. This can help engender trust and assist with connecting families to ASD services.
- Pediatric therapy providers should be educated in identifying early signs of ASD, as well as how to discuss ASD in culturally appropriate ways.
Takeaways for OT practitioners
1. This was a great illustration of how complex and multifactorial racial and ethnic health disparities are.
Wow—we were just looking at one facet of ethnic healthy disparities in one diagnosis. Yet, the results were still super complex. I feel like the authors were anticipating that the Latino groups would have experienced MORE barriers than the White group, which would have helped explained the disparity in care. Or, maybe they expected to learn that issues like access to an interpreter would have been a bigger factor for the limited proficiency group. But, the data seemed to suggest that nebulous factors were at play, which they couldn’t quite identify.
2. All roads seem to point to the development of a more diverse, culturally competent workforce.
Even though the situation is complex, it does not mean we should be paralyzed with inactivity. The article gives great recommendations, and the biggest and most glaring one is the need for a diverse, culturally competent staff. This should hit close to home for occupational therapists, as our profession remains predominantly white and female. The need for a changing workforce was also discussed in our podcast episode, Beyond Occupational Injustice.
3. This was another stark reminder of how far we have to come, in terms of autism support.
For a diagnosis that impacts 1 in 68 children, the amount of barriers experienced by the participants feels unconscionably high. The amount of unmet needs across all groups is also staggering. We’ve looked at several studies in the Club showing that unmet needs continue to increase in the autistic population well into adulthood. The need for improvement in autism care across the lifespan is an ongoing theme, and you can hear us discussing this issue on our podcasts, The Services Cliff and Autism and Supporting Adults on the Spectrum.
We have a lot of work to do in improving care for our austistc clients, and this is article is stark reminder that we need to be moving into a future where all of our clients benefit from these improvements.
Here’s the full APA citation for this article:
Zuckerman, K. E., Lindly, O. J., Reyes, N. M., Chavez, A. E., Macias, K., Smith, K. N., & Reynolds, A. (2017). Disparities in diagnosis and treatment of autism in latino and non-latino white families. Pediatrics, 139(5).
Earn one hour of continuing education by listening to the podcast on this article!!
In this podcast episode, we dive even deeper into this topic, with OTs (and Club members!), Cristina Reyes Smith and Catherine Hoyt. You may be eligible for continuing education credit for listening to this podcast. Please read our course page for more details!