Maia Jackson, M.S., BCBA
Clinical Development Manager, LEARN Behavioral

Language development is a critical component of the day-to-day lives of young children. It is used within a variety of contexts, including playing with peers, building relationships, functionally communicating needs, etc. As such, there is a heavy emphasis on language and communication built into most applied behavior analytic (ABA) programs. Because such a heavy emphasis is placed on language, it is important that practitioners are mindful of the specific language or languages that are incorporated in the therapeutic setting. In order for ABA programs to be socially significant, services should represent and accommodate for the dominant language of the family. By doing so, children and their families will experience a variety of benefits.

By promoting the use of the family’s native language, children have an increased likelihood of communication opportunities with their immediate and extended families, friends, and community. In addition to having more opportunities to communicate, the quality of the interactions will be more meaningful as caregivers are more likely to effectively express their own emotions, hold their child’s attention, and more thoroughly discuss topics of interest when using their native language (Zhou, et al., 2019). There are also benefits to multilingualism outside of the familial unit. Research has shown that children who are raised in multilingual homes tend to demonstrate higher perspective talking skills than children who do not (Zhou, et al., 2019). Despite all of the benefits to speaking one’s native language, families often face a number of barriers, especially when seeking out autism-related services.

While we live in a culturally diverse country, English remains the dominant language in most regions of the U.S. When children turn on the TV, chances are the shows they watch are in English. When they go to school, they will receive a primarily English education and their peers will speak primarily English. Autistic individuals who receive behavior analytic treatment in the U.S. are likely receiving those services in English. Despite all of these barriers, there are ways for parents and caregivers to advocate for their bilingual children and family.

1. Look for providers who speak your native language.

One of the first measures to take when selecting a service provider is to request clinicians who speak your native language. Bilingual service providers can be hard to find and it may take time, but let your provider know your preference so they can attempt to hire and/or pair you with appropriate staff members.

2. Request translation services.

In cases where there are no staff members available to provide services in your native language, consider asking for translation services. Even if you are proficient in English, it may be easier or feel more comfortable for you to communicate in your native language. Per the Behavior Analyst Certification Board’s (BACB) Ethics Code for Behavior Analysts, the clinician you are working with should make every effort to effectively communicate with you and provide you with the opportunity to ask questions and participate in the development and implementation of your child’s program.

3. Consider the assessment language.

If your child speaks a language other than English, it is important to discuss the benefits of your child being assessed in that language. Providers use assessment results as a tool to guide the clinical program and decision making. Having the results of the assessment in your child’s primary or dominant languages will give a more accurate picture of your child’s strengths and areas of need. The starting point of the program will be more representative of your child’s language abilities.

4. Ensure the program is visually representative of your child and your family.

Visual tools and stimuli are often used as prompts, supports, and/or reinforcement systems within many ABA programs. These visual supports may serve to outline a schedule for the day, visuals might accompany a short narrative or story describing a social scenario your child might encounter, or you might see visual images used as reminders or prompts of what steps come next in routine with multiple steps, such as hand washing. These visual items should be representative of your child and your family. Discuss incorporating your native language and culture into these items in order to promote their use and acceptance by your child. If your child accepts the stimuli and is motivated to use them, effectiveness of their intended purpose will likely increase.

5. Discuss your language and other cultural values with your team.

Per the Ethical Code for Behavior Analysts, your cultural norms, traditions, and expectations should be extended through all aspects of the ABA program. Social interactions, communication, play activities, and activities of daily living are areas that are addressed in many ABA programs and are going to be affected by language, culture, and traditions. Discussing the ways your language and culture impact your day-to-day routines and expectations will help the clinical team develop and implement a program that is best suited to your child and your family.
Serving as the navigator and advocator of your child’s services is a huge role. Advocating for language will often be just as important as advocating for hours, goals, or other supports. Use your team to provide support and to feel empowered to be the advocate your child and your family need.

Supports at LEARN:

Document translation services
Translation services
Language Resource Library
Staff training and tools related to Diversity, Equity and Inclusion

Zhou, A., Munson, J.A., Greenson, J., Jou, Y., Rogers, S., Estes A.M. (2019). An exploratory longitudinal study of social language outcomes in children with autism in bilingual home environments. Autism, 23(2), 394-304.

Katherine Johnson. M.S., BCBA
Senior Director of Partnerships, LEARN Behavioral

Note: This article is about a form of ableism that affects one part of the autistic community: autistic people who are proficient verbal communicators. Those who communicate with AAC devices, typing, sign, or who don’t yet have the communication skills to engage with the wider world face other forms of ableism and discrimination not described in this article.

The Double Empathy Problem

Remember the game “telephone”? One person whispers a message to another, that person whispers to the next, and on down the line until the last person announces the message so everyone can laugh at how many times the original sentence has been distorted.

Using a variation of this exercise, a study looked at how a message fared if the string of people in the telephone line were all autistic, all neurotypical, or a mix of both. It turns out that the rate at which the message degraded among the verbal autistic people was no greater than that of the neurotypical people. It was only when the message was sent through a mix of autistic and neurotypical people that the meaning deteriorated significantly faster.

What does this tell us?

If effective social communication was objectively deficient (not just different) in verbal autistic people, we would expect that the all-autistic string of people would produce the worst decline in messages in the study; that wasn’t the finding. Instead, the autistic people received and passed along messages amongst themselves just as well as the neurotypical people. The faulty communication resulted not from the autistic participants but from the mismatch between autistic and neurotypical communication.

This small study illustrates a theory by Dr. Damian Milton that he calls the “double empathy problem.” Challenging the assumption that neurotypical people have social skills that autistic people simply lack, he posits that the disconnects between autistic and non-autistic people are not the result of a one-sided skill deficit; they are instead a mismatch of neurotypes.

Reframing

This is a dramatic reframing of the common belief about these communication breakdowns, which placed the fault squarely on the social skill profile of the autistic folks. The “empathy” part of the theory’s name refers to the widely-held idea that autistic people lack empathy, when the theory would suggest that autistic empathy is simply expressed differently. Slowly but surely, researchers are beginning to look at that other side of the coin: how the social skill profiles of neurotypical people might also undermine relationships.

For years, research has demonstrated that autistic people have difficulty interpreting facial expressions; a 2016 study finally looked at the reverse. They asked neurotypical people to interpret facial expressions of autistic folks – and they were unable to do it. The results of a series of studies in 2017 suggest that one reason people of different neurotypes have difficulty connecting is because neurotypical people form negative first impressions of autistic people (based upon appearance, not conversational skills), and subsequently avoid them. This indicates that some of the social isolation that autistic people face is due to ableism and discrimination.

Missing Out

The difficulties autistic and non-autistic people have connecting negatively impact both sides. Since autistic people are in the minority, disconnection from the neurotypical portion of their community can increase their feelings of loneliness and isolation. For its part, the neurotypical world is missing out on the unique, often innovative, autistic perspective.

Autistic people who have had huge cultural impacts on our society (environmental activist Greta Thunberg, actor Dan Akroyd, and Pokemon creator Santoshi Tajiri, to name a few) have had success in spite of a society that is largely unsupportive of and, at times, openly hostile to, the social profile of autistic folks. Imagine what brilliance we miss out on when autistic people are looked over, avoided, not hired, etc.

Even those who are not destined to become one of the famous few mentioned above have a perspective that can deeply impact those around them. Autistic people see the world from different angles, which can be an advantage in everyday problem-solving. They generally have a strong sense of justice, an unwillingness to be cowed by hierarchy, and a drive for honesty, sincerity, and specificity, all beneficial qualities in social relationships and the workplace.

Expanding Neurotypical Empathy

The solution to the separation between people of different neurotypes has largely been to teach autistic people how to understand the rest of the world better. But by considering the double-empathy problem, we can see that this is only part of the issue. The other part is that non-autistic people also have skill deficits: interpreting and interacting with autistic people.

Just as history is written by the winners, social norms are written by the majority. If we want to work toward a future where people of all neurotypes better understand one another, we must listen to the experiences of the minority. It’s important to recognize that neurotypical “social norms” exist because they’re most common, not because they are inherently superior. These dominant “social norms” directly result from how neurotypical people think, behave, and process the world.

“Empathy” is about understanding another person’s experience. Ironically, to succeed in our society, autistic people must display empathy nearly constantly: decoding others’ unwritten rules and learning to approach the world in a way that works for others. To bridge the divide, nurture the gifts of the autistic people in our society, and for everyone to benefit from the valuable perspectives of the neurodivergent, those with neurotypical brains must follow this example. By challenging themselves to work toward understanding and adapting to the way autistic people see and experience the world, neurotypical folks can open themselves up to new friends with an intense devotion to honesty. Employers will find innovative autistic employees with rare specializations and a knack for accuracy. And society will benefit from recognizing and celebrating the valuable and previously underappreciated gifts of the autistic mind.

Damian E.M. Milton (2012) On the ontological status of autism: the ‘double empathy problem’, Disability & Society, 27:6, 883-887, DOI: 10.1080/09687599.2012.710008

Sheppard, E., Pillai, D., Wong, G.TL. et al. How Easy is it to Read the Minds of People with Autism Spectrum Disorder?. J Autism Dev Disord 46, 1247–1254 (2016). https://doi.org/10.1007/s10803-015-2662-8

Sasson, N., Faso, D., Nugent, J. et al. Neurotypical Peers are Less Willing to Interact with Those with Autism based on Thin Slice Judgments. Sci Rep 7, 40700 (2017). https://doi.org/10.1038/srep40700

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