Why Modern Autism Research Lacks Ethnic and Cultural Diversity

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Autism Research missing Ethnic and Cultural Diversity

Autism doesn’t see where its victim is coming from. So why should research focus only on children from the caucasian middle-class families? A new study found out that a vast majority of autism-related research suffer from a lack of focus on the other ethnic and cultural groups.

Behavioral interventions and treatment programs for angle-saxon or caucasian male children might not prove too beneficial for children from other cultural and ethnic backgrounds. To ensure that treatment is equally effective for a diversified community of children with ADHD and Autism, further studies are required. However, this particular study that finds the flaws in autism research parameters is published in the

However, this particular study that finds the flaws in autism research parameters is published in the Journal of Special Education. It gives added weightage on the need to recruit participants from all walks of life. This will help to develop effective care plans and therapies for ASD children from other ethnic communities.

Why Focus on a Diversified Research?

There are many reasons behind; however, the most important indications that a diverse group for Autism studies provide are:

These are the most essential factors that clinicians need to consider before recommending/tailoring a care plan for a specific child.

What researchers have to say?

It is quite a challenge to recruit participants from diverse backgrounds. Such populations have historical records of being reluctant to participate in research studies, which in a way is a typical characteristic of autism. Researchers know that, but they are also aware of the difficulties of recruiting and retaining people with a time and resources crunch, including a lack of reliable transportation.

Elizabeth West, Lead study author; Associate Professor of Special Education, University of Washington suggests, “The key concern is that practitioners are primarily considering these evidence-based practices that are most applicable to white children or predominately caucasian children and are then applying those learnings to a diverse community from different racial, ethnic and cultural backgrounds. What we know is that autism does occur in linguistically and culturally diverse population, and many identified a lot later in life.”

Elizabeth also believes that if the researchers do a better job at being culturally more responsive in reaching out to different other communities, then they should be able to partner and have more diverse participants, thereby resulting in more tangible value-based research that serves communities.

The problem with PECS

pecs communication lacks diversity

It’s the Picture Exchange Communication System (PECS) intervention process (a specialized category of Applied Behavior Analysis) that comes under scrutiny above everything else. It’s a program designed for nonverbal autistic children and uses pictures and/or symbols to encourage communication.

However, due to cultural and linguistic diversities, these pics and symbols are often not much comprehensible both for the affected and his/her family. That way, the PECS system rather becomes a barrier than a tool for bringing improvements and bridging social impairments. So, according to Elizabeth West, some families are avoiding these types of practices at home, which furthermore proves the need for customizing and adjusting the learning procedures and behavioral interventions, so that they suit a wider variety of people.

The Study: Facts and Figures

A total of 408 published papers (peer-reviewed) address the evidence-based practices for autism interventions on youth were analyzed. Only 73 of these papers (17.9%) reported the background (race, ethnicity and/or nationality) of the participants. That’s lower than what was expected. White children (a total of 1719) remained a large majority

That’s lower than what was expected. White, English speaking children (a total of 1719) remained a large majority among the 2,489 total participants while the details on ethnicity or nationality were disclosed for only the remaining 770, out of which, 489 (63.5%) happened to be whites. The rest, excluding the only Native American participant, are as follows:

  • Multiracial participants: 20.6%
  • Blacks: 6.8%
  • Asians: 5.2%
  • Hispanic/Latino: 2.5%
  • Middle-Eastern: 1.3%

The Outcome of the Study

  • Caucasian children with autism are diagnosed differently, and often at significantly higher rates, than black, Asian, Hispanic, Middle Eastern, Native American and multiracial children.
  • Children of middle and upper-class white families tend to have better access to healthcare resources. This includes psychological and developmental paediatricians.
  • White children are represented more in these studies because they have access to early diagnosis.
  • A major contributing factor often is age. Autistic children in diverse populations face language barrier as much as their parents and other family members.

An Honest Attempt to Make Things Better

The researchers point out that an evidence-based practice is effective for some children, not all; not always. Healthcare practitioners, therefore, must examine the degree to which the positive results reported for a narrow group of participants (children from traditionally underrepresented groups) effectively translate to autism. By determining who benefits from different interventions and why practitioners might be able to serve racially and ethnically diverse patients.

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