Disability as a Valuable Form of Diversity, Not a Deficit

Snapshots of different people of different ages

Typically, educational professionals focus on how to help students better access what is considered ‘typical’ learning (Ong-Dean, 2005). This is considered ‘deficit thinking,’ or thinking that defines a diagnosis by its challenges, in order to treat, fix, or minimize specific features of a student’s disability. This kind of approach to education is challenging for autistic students. This article will explore how educators can move away from this kind of pathological approach to better help autistic students succeed academically.

Positionality statement

While I bring a dynamic perspective to this article due to my professional experiences (former special educator and special education administrator; current assistant professor of Disability Studies and Special Education) and personal identity markers (white, disabled, cisgender female), it should be noted that I am not autistic and therefore am presenting this from a biased, non-autistic lens. I acknowledge that I may reference ‘experts’ that autistic individuals find controversial. I also recognize that I am still processing my own personal biases and shortcomings with this work. My lived experience with a disability and my professional positionality in disability scholarship and education systems is driving my efforts.

How did we get here?

In the United States, autism is classified as a developmental disability, identified by “social communication difficulties, difficulties with cognitive empathy or theory of mind, the difficulties adjusting to unexpected change, a love of repetition or ‘need for sameness’, unusually narrow interests, and sensory hyper- and hyposensitivities” (Baron-Cohen, 2017, para. 3). This definition aligns with the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM) diagnostic criteria, which in turn relies on current trends in research. There are significant limitations in this kind of diagnostic system, as pointed out by the autistic community (Davis & Museus, 2019).

Table 1. Traditional Autism Research and Responses from the Autistic Community

When Autism Research . . .Response from the Autistic Community
Focuses on how to reduce or eliminate diagnostic traits in autistic people, or implies that being ‘typical’ is the goal.This causes harm because being ‘typical’ may not only oppose an autistic person’s goals, but ‘fixing’ autistic traits is not natural for autistic people. It is also problematic when these traits aren’t causing harm to the individuals or people around them (Ainslow, 2021; Ne’eman, 2021).
Describes autistic people as amoral or incapable of comprehending morality.This causes harm because autistic people have morals and are capable of comprehending morality (Ainslow, 2021).
Is conducted by individuals who are not autistic and who have not collaborated with autistic scholars to conduct their research.This causes harm because researchers who are not autistic do not adopt “a balanced view of neurodiversity [that] recognizes . . . diversity brings fundamental collective advantages” (Leadbitter, 2021, para 5).

Where do we go from here?

There is a growing amount of evidence that the disabling impairments of autism are due to the need of support in one’s environment, and not because of one’s inability to function (Lai, et al., 2013). There are ways to purposefully integrate environmental supports into educational spaces.

Strategy 1: Learn more about Disability Studies in Education (DSE)

Grounded in the theory of Disability Studies, Disability Studies in Education (DSE) frames disability as a valuable form of diversity rather than a deficit (Collins & Ferri, 2016). DSE challenges educators to revisit “the meaningful participation of everyone in [the] learning community” (Collins & Ferri, 2016, p. 10) and to accept autism as a positive aspect of one’s identity (Berger, 2013). When DSE is positioned in classrooms, autistic traits are centered as strengths rather than deficits, e.g., instead of framing an autistic student as having “a love of repetition or ‘need for sameness’” (Baron-Cohen, 2017, para. 3), an educator could focus and incorporate the autistic person’s excellent memory for detail or a strong ability to detect patterns.

Strategy 2: Consider your language

Parents of autistic people and professionals who work with autistic people often prefer person-first language, e.g., ‘individual with autism’, but when people use person-first language, they are suggesting that the person can be separated from their autism. The autistic community strongly advocates for identity-first language, e.g., ‘autistic individual’, because autism is an inherent part of one’s identity.

Yet, when we say “Autistic person,” we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person . . . Ultimately, we are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference. (Brown, 2011, para. 18)

Many people feel attacked with this kind of shift of language, but language is one way to influence societal attitudes, and there is a need to change societal attitudes towards autistic people (Brown, 2011).

Strategy 3: Accept and normalize autistic traits in your classroom

In sensory-friendly environments, autistic people can function well or at higher levels than their non-autistic peers, but there can be a lot of distractions in classrooms. Educators can help their autistic students cope with these environmental challenges through basic accommodations like allowing students to 1) work with music on; 2) wear noise canceling headphones; 3) use sensory or fidget tools; and 4) communicate via alternative modes of communication, e.g., text to speech or pen and paper. Autistic students may also engage in ‘stimming’, a self-stimulatory, repetitive behavior (Kapp et al., 2019) that is used to self-regulate or cope with environmental challenges.

Another common practice in American classrooms is for students to show ‘whole body listening’, or how they are actively listening with all parts of their body (Think Social Publishing, 2008), e.g., quietly sitting still, eye contact with the teacher. Expectations around “whole body listening” often require autistic students to focus on their body positionality rather than the educational task. Some autistic students might listen or learn best sitting on the floor, while others may need to stand or pace. Any accommodation that will allow a student to work best should be allowed if they do not interfere with the student’s learning, even if it feels distracting or ‘abnormal’ to others.

Strategy 4: Engage with autistic perspectives

Instead of engaging with academic resources from non-autistic ‘experts’, I recommend seeking out scholarly resources that center autistic perspectives by 1) using asset-based language to describe autism and autistic people (see Kenny et al., 2016; Bury et al., 2020), and 2) focusing on person-centered mental health interventions (see Crane et al., 2019; Cassidy et al., 2020; Parr et al., 2020). I also recommend engaging with the autistic community directly. If this isn’t possible in your current communities, you can follow #actuallyautistic and other autistic individuals on social media. Here are some of my favorites:

Figure 1: Engage directly with the autistic community

Social Media accounts@transteachertales @autinelle @fidgets.and.fries@the.autisticats @galaxibrain
OrganizationAutistic Women & Nonbinary Network (AWN) https://awnnetwork.org

Note. This figure does not illustrate an exhaustive list.

Conclusion

The following strategies will help you better understand how to work with autistic students to maximize their learning. Remember that you do not have to understand why something is necessary to help them. In fact, perhaps it is best to remind ourselves that unless we are autistic, we may not ever understand!

Incorporate this . . .. . . by doing this!
Disability Studies in Education (DSE)Read and reflect upon DSE. Assess your current practices and how they do or do not align with this framework.
Asset-based languageUse identity-first language unless your students (note: not their caregivers or other providers) prefer people-first language.
Autistic traitsWork with the student to structure their bodies, movement (including stimming!), and communication in ways that make sense for the student’s learning.
Autistic research and autistic peopleEngage with autistic people and strengths-based research.

Elizabeth A. Harkins (Monaco), EdD, is an assistant professor in the Department of Special Education, Professional Counseling, and Disability Studies at William Paterson University. She is currently the program director of the autism and developmental disabilities advanced master’s program.

A former special education administrator, classroom teacher, and family advocate, Dr. Harkins now studies the critical importance of social justice in special education, intersectional pedagogy, and disability studies in education. Dr. Harkins is on the Board of Directors for the Council for Exceptional Children’s (CEC) Division on Autism and Developmental Disabilities (DADD). She is also on the Fulbright Specialist Roster.

References

Ainslow, M. A. (2021). RE: Right TPJ in moralality in people with Autism. https://www.jneurosci.org/content/41/8/1699

American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders. 5th ed. American Psychiatric Association.

Autistic Self Advocacy Network (2021). About Autism. https://autisticadvocacy.org/about-asan/about-autism/

Autistica (2015). Your questions: Shaping future autism research. https://www.autistica.org.uk/downloads/files/Autism-Top-10-Your-Priorities-for-Autism-Research.pdf

Baron-Cohen, S. (2017). Editorial perspective: Neurodiversity – a revolutionary concept for autism and psychiatry. The Journal of Child Psychology and Psychiatry. 58(6), 744-747. https://doi.org/10.1111/jcpp.12703

Baglieri, S., Valle, J.W., Connor, D.J., & Gallagher, D.J. (2011). Disability Studies in Education: The need for a plurality of perspectives on disability. Remedial and Special Education 32,(4), 267-278.

Berger, R.J. (2013). Introducing Disability Studies. Lynne Rienner Publishers, Inc.

Brown, L. X.Z. (2011, August). The significance of semantics: Person-First language: Why it matters. Autistic Hoya. https://www.autistichoya.com/2011/08/significance-of-semantics-person-first.html

Bury, S. M., Jellett, R., Spoor, J. R., & Hedley, D. (2020). “It defines who I am” or “It’s

something I have”: What language do [autistic] Australian adults [on the autism spectrum] prefer? Journal of Autism and Developmental Disorders. 10.1007/s10803-020-04425-3

Cassidy, S. A., Robertson, A., Townsend, E., O’Connor, R. C., & Rodgers, J. (2020). Advancing our understanding of self-harm, suicidal thoughts and behaviours in autism. Journal of Autism and Developmental Disorders, 50(10):3445-3449.

Connor, D. (2012). Does Dis/ability now sit at the table(s) of social justice and multicultural education?  A descriptive survey of three recent anthologies. Disabilities Study Quarterly, 32(3).

Crane, L., Adams F., Harper,, G., Welch, J., & Pellicano, E. (2019). Something needs to change: Mental health experiences of young autistic adults in England. Autism, 23(2), 477-493.

Crompton, C. J., Sharp, M., Axbe, H., Fletcher-Watson, S., Flynn, E. G., Ropar, D. (2020). Neurotype-Matching, but not being autistic, influences self and observer ratings of interpersonal rapport. Frontiers in Psychology, 11.

Davis, L. P, & Museus, S. D. (2019). What is deficit thinking? An analysis of conceptualizations of deficit thinking and implications for scholarly research. Currents, 1(1). https://quod.lib.umich.edu/c/currents/17387731.0001.110?view=text;rgn=main

Ferri, B. & Connor, D. (2005). Tools of exclusion: Race, disability, and (re)segregated education. Teachers College Record, 107(3), 453-474.

Lai, M. C., Lombardo, M., Chakrabarti, B., & Baron-Cohen, S. (2013). Subgrouping the autism ‘spectrum’: Reflections on DSM-5. PLoS Biology, 11.

Leadbitter, K., Buckle, K. L., Ellis, C., & Dekker, M. (2021). Autistic self-advocacy and the neurodiversity movement: Implications for autism early intervention research and practice. Frontiers in Psychology, 12, 10.3389/fpsyg.2021.635690

Kapp, S. (2020). Autistic community and the Neurodiversity Movement: Stories from the frontline, (ed. S. Kapp). Springer Nature, 1–19.

Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442-62.

Milton, D. E. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability and Society. 27, 883–887.

National Autistic Taskforce (2019). An independent guide to quality care for autistic people. https://nationalautistictaskforce.org.uk/wp-content/uploads/RC791_NAT_Guide_to_Quality_Online.pdf (retrieved November 10, 2021).

Ne’eman, A. (2021). When disability is defined by behavior, outcome measures should not promote “passing.” AMA Journal of Ethics, https://journalofethics.ama-assn.org/article/when-disability-defined-behavior-outcome-measures-should-not-promote-passing/2021-07

Ong-Dean, C. (2005). Reconsidering the social location of the Medical Model: An examination of disability in parenting literature. Journal of Medical Humanities, 26(2/3), 141–158. https://doi.org/10.1007/s10912-005-2915-1

Parr, J. R., Brice, S., Welsh, P., Ingham, B., Le Couteur, A., Evans, G., Monaco, A., Freeston, M., & Rodgers, J. (2020). Treating anxiety in autistic adults: Study protocol for the Personalised Anxiety Treatment-Autism (PAT-A©) pilot randomised controlled feasibility trial. Trials, 21(1), 265.

Pearson, J. N., Hamilton, M-B., & Meadan, H. (2018). “We saw our son blossom”: A guide for fostering culturally responsive partnerships to support African American autistic children and their families. Perspectives of the ASHA Special Interest Groups, 3, 84-97.

Think Social Publishing. (2008). What is social thinking? Social Thinking. http://www.socialthinking.com

Leave a Reply