“[Autistic people’s] firsthand experiences in education, both positive and negative, should be the cornerstone of how we design, implement, evaluate, and subsequently improve educational programming for autistic students.” 

 

– Laurent & Fede, 2021

If you spend any time on social media, you’ve probably come across information on neurodiversity. And some of those discussions might have made you uncomfortable, or made you wonder if your practice is considered autistic-affirming or (uh-oh) ableist. Let’s face it. None of us want to promote any kind of -ism in our practice: racism, ableism, classism… But we all have internal biases, and the best way to begin to confront and change those is to become aware of them. Recently, minority groups, many of whom have been marginalized for decades or even centuries, have stood up and demanded that the world listen. And the neurodivergent community, including autistic people*, is one of those groups.

If you look back on past reviews on assessment and intervention options for autistic individuals, you’ll see that the science is very much based on a medical model of disability, in which the individual possesses some internal problem, in this case neurological, that needs to be “fixed.” This requires the autistic individual to carry the entire load of change until they look and behave as neurotypical. We’ve seen some papers (here and here) making the social media rounds that challenge this medical model and encourage researchers, clinicians, and society as a whole to view autism through a new lens (and adjust our research and practice accordingly).

Things to consider (use this information to reflect on your views and adjust your lens):

“... considering how autistic and neurotypical people fare perceiving and understanding each other, there could be a failure of empathy in both directions.” 

 

– Mitchell et al., 2021

• Double empathy problem: The idea that both autistic and neurotypical people struggle to understand each other. It’s not that autistic people have all the social deficits (in fact, autistic people read autistic people pretty well, and neurotypical people are actually kind of bad at interpreting autistic behavior); it’s that people with different ways of processing sensory information experience the world in different ways, and struggle to relate to each other.
• Dialectical misattunement hypothesis: Kind of an effect of the double empathy problem. Over time, failed or difficult interactions lead to diverging communication styles between groups. We want to support successful interactions that are positive, joyful, and mutually beneficial so that all people can strengthen shared systems of communication and interaction. This means someone has to change, yes, but should the burden fall completely on autistic people, or can society shift and accommodate a little to be more accepting of autistic styles of interaction?
• Transactional model of development: Social interaction drives development, because the way we behave affects how people perceive us, which affects how others treat us, which affects how we interpret others, which then drives how we behave. This gets tricky, because autistic individuals are often taught to mask (see below), so that others view them positively. Unfortunately, masking is not really a good thing in the long term, according to both reports from the autistic community and research.
• Masking (also called camouflaging): When neurodivergent individuals have to hide their actions or characteristics in order to appear neurotypical. Sometimes people learn to do this on their own, other times they are taught to mask in therapy. Masking might include using social scripts, suppressing behaviors such as echolalia or rocking, using eye contact because it’s expected even though it feels uncomfortable, etc. There is growing evidence to suggest that masking poses a huge risk to the mental health of autistic individuals, including higher rates of suicide or suicidal thoughts.
• Social model of disability: In contrast to the medical model, it shifts the burden of change away from the individual and acknowledges that society has an important role in fostering acceptance and accommodation so that individuals can participate as fully as they desire.

Want a copy of this Double Empathy Problem graphic to use with client families? Grab it here.

“The autistic community is clear that faking something as human as emotional expression for years of one’s life can easily form one very fatiguing element of a mask and is something education should aim to avoid.” 

 

– Laurent & Fede, 2021

Steps we can take as SLPs:

• Listen to autistic voices. Go to the source, and consider lived experiences as you work to truly understand your clients. To start, this paper from Amy Laurent and Jacquelyn Fede provides multiple perspectives from autistic children and adults as well as excellent tools for helping autistic students understand and define their own regulation systems. The paper is eye-opening, offers tools that can immediately be put into practice, and is available for free to everyone.
• Consider intended outcomes, and the unintended consequences. Be aware of the message we are sending to the autistic community. When we encourage masking, or say things like “beat autism” or “cure autism,” we imply that society would be better off if autistic people got rid of a significant part of their identity and neurology. This is harmful, even if we think we’re helping.
• Change our lens so the “deficit” related to autism is no longer tied to the skills and abilities of the individual. Instead, the problem lies in the interaction between people with different neurologies, and the interaction is the issue that needs to be addressed. Now, the expectation to change and “do better” no longer falls to the minority group (autistic people), but to everyone. We can all do better.
• Protect communication in all modalities. Seems like a no-brainer… haven’t we been doing that? Well, yes. We’re SLPs! But we need to foster communication in all forms. Sometimes autistic individuals need access to part-time AAC when dysregulated, even if they usually speak in (see more on regulation in the Laurent and Fede article). We need to make sure that our clients have access to communication in the form that is most accessible to them in the moment, and maybe even do some school or community education to make sure that others accept that communication as well. 
• Self-advocacy, problem solving, and meta-cognition. Goals will look different for everyone, but focusing on these skills supports people in learning to recognize their own level of regulation, collaborate with others to develop useful accommodations, and advocating for those accommodations.
• Provide information to young people that helps them learn and make sense of their experiences. We really like the science-y resources (shocker); but find things that match what your client will like.

This might be a big shift in thinking, but start small, take it one step at a time, and move forward. We are aiming for a world where everyone is included in a way that makes them feel comfortable, safe, and validated.

“The way forward is not to seek a way of changing autistic people to make them ‘fit in’ but to change society to make all of us more tolerant of diversity.” 

 

– Mitchell et al., 2021

NOTE: Neurodivergent applies to more than autism. Individuals with ADHD and other neurodevelopmental conditions are also included in the community. Rather than focusing on diagnoses as problems that need to be corrected, the neurodiversity model instead supports a strengths-based approach to individual assessment and intervention and highlights societal barriers as the issues that need to be addressed.

Davis, R. & Crompton, C. J. (2021). What do new findings about social interaction in autistic adults mean for neurodevelopmental research? Perspectives on Psychological Science. https://doi.org/10.1177/1745691610958010 [open access]

Laurent, A. C. & Fede, J. (2021). Leveling up regulatory support through community collaboration. Perspectives of the ASHA Special Interest Groups. https://doi.org/10.1044/2020_PERSP-20-00197 [open access]

Mitchell, P., Sheppard, E., & Cassidy, S. (2021). Autism and the double empathy problem: Implications for development and mental health. British Journal of Developmental Psychology. https://doi.org./10.1111/bjdp.12350