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Respecting Autistic Individuals through Compassionate Words and Actions

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Title: Respecting Autistic Individuals through Compassionate Words and Actions
Language: English
Authors: Reva Mathieu-Sher, Bridget Green, Kara Mcgoey
Source: Communique. 2024 53(3):24-26.
Availability: National Association of School Psychologists. 4340 East West Highway Suite 402, Bethesda, MD 20814. Tel: 301-657-0270; Fax: 301-657-0275; e-mail: publications@naspweb.org; Web site: http://www.nasponline.org/publications/
Peer Reviewed: N
Page Count: 3
Publication Date: 2024
Document Type: Journal Articles
Reports - Descriptive
Descriptors: Autism Spectrum Disorders, Caregiver Role, Caring, Altruism, Language Usage, Attitudes toward Disabilities, Interpersonal Communication
ISSN: 0164-775X
Abstract: A compassionate care framework considers the neurodiverse needs of autistics and challenges the practitioner to think beyond their own comfort levels, preferences, and understanding of "correct" labels to consider how their language and actions support or create barriers for students. The foundational goals of compassionate care seek to build relationships with all stakeholders in the areas of respect, trust, and empathy. The use of language and the actions the practitioner takes to build trust and respect exemplify the implementation of a compassionate care-based framework to support autistics.
Abstractor: ERIC
Entry Date: 2024
Access URL: https://www.nasponline.org/resources-and-publications/cq-archive
Accession Number: EJ1446360
Database: ERIC
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  Value: <anid>AN0180233803;[10uj]01nov.24;2024Oct15.04:56;v2.2.500</anid> <title id="AN0180233803-1">Respecting Autistic Individuals Through Compassionate Words and Actions </title> <hd id="AN0180233803-2">A compassionate care framework considers the neurodiverse needs of autistics and challenges the practitioner to think beyond their own comfort levels, preferences, and understanding of "correct" labels to consider how their language and actions support or create barriers for students.</hd> <p> <bold>the rights of people with disabilities</bold> have evolved throughout history. This progress has been largely driven by advocates promoting the need for access, inclusion, and acceptance for disabled individuals. Beginning in the 1970s, the disability community and outside supportive partners led sociopolitical movements initiating broad legislative change, including the introduction of Section 504 of the Rehabilitation Act and the Americans with Disabilities Act. This legislation fostered access to rights across public and private settings and created many opportunities for social inclusion. Legislation such as [<reflink idref="bib15" id="ref1">15</reflink>], which changed "mental retardation" to "intellectual disability" in U.S. federal law, promoted inclusion and the use of person-first language (PFL). Through such changes, the disability community demonstrated the power of language and highlighted how words can impact access.</p> <hd id="AN0180233803-3">The foundational goals of compassionate care seek to build relationships with all stakeholders in the areas of respect, trust, and empathy. The use of language and the actions the practitioner takes to build trust and respect exemplify the implementation of a compassionate care-based framework to support autistics.</hd> <p>The rise of disability justice movement ([<reflink idref="bib16" id="ref2">16</reflink>]) and the social model of disability ([<reflink idref="bib13" id="ref3">13</reflink>]) provided frameworks that challenged people to consider disability as socially mediated, constructed, and influenced, meaning that the society that disabled individuals live within may also contribute to the barriers and successes that they experience.</p> <p>Of course, language alone is not sufficient to ensure comprehensive support for disabled individuals. A <emph>compassionate care</emph> framework ([<reflink idref="bib18" id="ref4">18</reflink>]) is grounded in demonstration of empathy, but goes beyond simply viewing a situation from another person's perspective—it includes active efforts to alleviate distress or suffering. This approach aims to build and center bidirectional relationships with not only the individual client, but also their caregivers and other professionals ([<reflink idref="bib10" id="ref5">10</reflink>]). The framework involves engaging in actionable steps to create supportive environments that address challenges and reduce barriers the individual and caregivers may be experiencing.</p> <p>In other words, thinking and acting carefully and sensitively about language preferences is one way that practitioners can implement a compassionate care framework. However, what happens when an individual or community does not prefer or identify with the language society ascribes to them? This is the case for some autistics who advocate against PFL in favor of identity-first language (IFL).</p> <hd id="AN0180233803-4">Person-First Language</hd> <p>School psychologists are typically trained to use special education categories and diagnostic nomenclature to provide disabled individuals with access to services. While this labeling is necessary, it has promoted a continuation and prioritization of a deficit model of disability. As such, the field has embraced a person-first approach to promote a focus on the individual instead of the disability.</p> <p>PFL has been considered professionally appropriate and promoted by Rosa's Law and the American Psychological Association ([<reflink idref="bib1" id="ref6">1</reflink>]) as foundational for creating inclusive and equitable environments. PFL emphasizes that the individual should be viewed as more than just their disability and that the person should be placed first, before the disability. For example, if a school psychologist subscribes to PFL, it is considered best practice to refer to an "individual with autism" instead of an "autistic person." Before 2020, the APA <emph>Publication Manual</emph> recommended the use of PFL to avoid labeling a person by their disability, emphasizing that since the person is not the disability, the two concepts should be separate.</p> <p>It is important to recognize that there are advantages to the use of PFL, which promoted changes in our thinking about the treatment of disabled individuals by emphasizing a focus on the person and not the disability, thus reducing the stigma of the disability and promoting equity in how we reference others in more inclusive settings. Such frameworks encourage practitioners to consider the similarities among people instead of the differences. Using PFL for a group of individuals with the same diagnosis also promotes the person's specific needs, creating a more individualized approach to interventions. Similarly, PFL allows practitioners to focus on the individual's needs, including each student's values and preferences ([<reflink idref="bib7" id="ref7">7</reflink>]).</p> <p>However, in recent years, as the preferences of individuals continue to evolve, some questioning of PFL has emerged. In fact, the current [<reflink idref="bib2" id="ref8">2</reflink>]<emph>Publication Manual</emph> advises that PFL should be used to the greatest extent possible; however, practitioners should be mindful that language evolves and that PFL or IFL may be appropriate depending on individual preference ([<reflink idref="bib3" id="ref9">3</reflink>]). The current version of the APA manual specifically states that it is acceptable to use PFL <emph>and</emph> IFL, and the practitioner should be aware of and respond to the preferences of individuals and their families.</p> <hd id="AN0180233803-5">The Neurodiversity Movement and IFL</hd> <p>The neurodiversity movement seeks to increase and protect the rights of neurodiverse individuals in a manner that emphasizes the development of inclusive settings ([<reflink idref="bib14" id="ref10">14</reflink>]). This involves discouraging a deficit-based model of disability and encouraging a strengths-based approach that celebrates the unique differences of neurodiverse profiles. The neurodiversity movement emphasizes transitioning away from attempts to assimilate autistics to mimic their neurotypical peers ([<reflink idref="bib9" id="ref11">9</reflink>]).</p> <p>As part of the movement, many self-advocates emphasize a need to shift from PFL to IFL when referring to autistics ([<reflink idref="bib12" id="ref12">12</reflink>]). For example, a person may say, "The child identifies as autistic," as opposed to "The child is a person who has autism." IFL acknowledges that autism is an inherent part of the individual and cannot and should not be separated from that individual.</p> <p>Although limited, there is research affirming autistics' preference for IFL. However, this preference can be influenced by various individual characteristics such as the age of diagnosis, gender, IQ, higher level of autistic traits, and perspectives on autism ([<reflink idref="bib5" id="ref13">5</reflink>]; [<reflink idref="bib17" id="ref14">17</reflink>]).</p> <p>Many autistics argue that IFL acknowledges that others understand they are not only a person, but a person who may have multiple intersecting identities that comprise who they are as an individual, and that they may encompass specific interests, preferences, and needs that may not be fully understood by the nondisabled community ([<reflink idref="bib4" id="ref15">4</reflink>]). Furthermore, these multifaceted identities influence individuals' ability to navigate their education and life experiences. Allowing autistics to claim autism as part of their overall identity acknowledges the neurodiverse needs of that individual and the potential struggles an autistic may encounter while navigating a world that was not inherently built for them or built to support them.</p> <hd id="AN0180233803-6">The Challenges of Shifting From PFL to IFL</hd> <p>To further complicate this already nuanced issue, caregivers do not always align their views with the self-advocacy and neurodiversity movements related to identification, sometimes preferring PFL when referring to their child ([<reflink idref="bib5" id="ref16">5</reflink>]). Although some research suggests that parents prefer to use specific language based on their level of acceptance of the disability, it is essential to acknowledge how there is a potential for the adults' language to be in direct conflict with how the autistic individual self-identifies ([<reflink idref="bib6" id="ref17">6</reflink>]).</p> <p>Research also suggests that professionals may have difficulty shifting language usage given their previous history and training specific to the social acceptability of using PFL ([<reflink idref="bib8" id="ref18">8</reflink>]). Many current school psychologists are uncomfortable with IFL, as they have been previously trained to use PFL as a sign of respect for the individual. Practitioners may feel they are being disrespectful if they use IFL. However, practitioners have an ethical responsibility to acknowledge and respect the wishes of those being served ([<reflink idref="bib2" id="ref19">2</reflink>]; [<reflink idref="bib11" id="ref20">11</reflink>]). While this shift in language has occurred in some specialized parts of our field, it has yet to be broadly accepted or generalized.</p> <hd id="AN0180233803-7">Providing Support Through Compassionate Care</hd> <p>The following suggestions are an actionable starting point for practitioners to integrate compassionate care into their practice by considering the social validity of words and actions.</p> <hd id="AN0180233803-8">Understanding the Complexities of Language</hd> <p>Evaluating and understanding how individuals identify is crucial to building rapport and establishing supportive relationships in school settings. By understanding the existence and complexities of PFL and IFL, school psychologists acknowledge the autistic's potential internal struggle and support the individual through a compassionate care lens.</p> <p>Suppose a child is learning about themself and considering using IFL to celebrate their unique identity. This belief system may directly conflict with how their parents view their disability, needs, and abilities. Applying a compassionate care lens in this situation would involve not only empathizing with the student's struggle, but also working with them to facilitate specific actions that reduce their distress. The practitioner allows the student to disclose the struggles associated with identity, provides opportunities for rapport building, establishes trust, and offers a safe space where the child can feel accepted in expressing those thoughts. Later steps might include solution-focused attempts to help caregivers understand the individual's position and the importance of labels and identities that may differ from their own.</p> <p>The practitioner should not wait for the autistic student to self-advocate for using IFL or PFL. Speaking up about basic needs like how to be addressed can be daunting, especially for someone who may struggle with social interactions. We should be proactive about identification options and forthcoming about asking the person about their preferred use of language.</p> <hd id="AN0180233803-9">Respect the Dignity, Autonomy, and Self Determination of the Person</hd> <p>[<reflink idref="bib11" id="ref21">11</reflink>]<emph>Professional Standards</emph> require school psychologists to respect the dignity, autonomy, and self-determination of those they support. Each time school psychologists provide opportunities for students to determine their preference for PFL or IFL, they provide a space for autistics to advocate for their own needs in that specific environment, with the potential for that skill to transfer outside of school settings. For example, the practitioner may proactively ask, "Do you prefer that I say you are an autistic person or a person with autism?" This simple action shows respect for the individual's dignity, autonomy, and self-determination.</p> <p>Once rapport is established, the practitioner should further support autonomy and self-determination by seeking to understand the rationale behind language choice. The practitioner should use a strength-based approach that allows the autistic to self-determine the focus of that rationale and should rely on the individual's perceptions to monitor how their unique strengths are centered. Because autistics demonstrate vast continuums of abilities and needs, this exploration of rationale should be considered only if the person has the requisite language ability to engage in such a discussion.</p> <p>In addition, school psychologists can demonstrate to students that assessments will be conducted, and data and reports presented, in a manner that respects them as individuals. Such actions remind the students that their preferences are valued and that the school team will ensure they receive strength-based related services that meet their unique needs and preferences.</p> <hd id="AN0180233803-10">Use Active Listening, Engage in Perspective-Taking, and Be Responsive</hd> <p>Practitioners may have the perception that the use of IFL is disrespectful to individuals. IFL also may feel uncomfortable to the practitioner after years of using PFL. However, the dignity and autonomy of the individual should come before our comfort. We must engage our perspective-taking skills and be flexible in our thinking. Active listening is essential to respecting the individual; compassionate care requires listening to their perspectives and responding accordingly to their preferences.</p> <hd id="AN0180233803-11">Final Thoughts</hd> <p>Allowing a student to identify in a manner that is most authentic to them creates an environment that prioritizes and values the student's social and emotional safety. Such opportunities can increase an autistic's ability to feel emotionally supported and respected by providing opportunities and a sense of control over how practitioners view and interact with them. Applying a compassionate care framework, particularly when it comes to the use of language, acknowledges the values and strengths of the individual. It reinforces that the person, not the intervention, is central to effectively supporting the individual.</p> <p>The use of IFL may involve a shift in the practitioner's thinking and practices. This may not be easy or intuitive, but our standards require it, and it is an essential part of providing an education that respects and values the person over our perceived correctness and discomfort.</p> <ref id="AN0180233803-12"> <title> REFERENCES </title> <blist> <bibl id="bib1" idref="ref6" type="bt">1</bibl> <bibtext> American Psychological Association. (2009). Publication manual of the American Psychological Association. (6th ed.).</bibtext> </blist> <blist> <bibl id="bib2" idref="ref8" type="bt">2</bibl> <bibtext> American Psychological Association. (2020). Publication manual of the American Psychological Association. (7th ed.). https://doi.org/10.1037/0000165-000</bibtext> </blist> <blist> <bibl id="bib3" idref="ref9" type="bt">3</bibl> <bibtext> American Psychological Association. (2022). Bias free language: Disability. https://apastyle.apa.org/style-grammar-guidelines/bias-free-language/disability</bibtext> </blist> <blist> <bibl id="bib4" idref="ref15" type="bt">4</bibl> <bibtext> Brown, L., (2011, August). The significance of semantics: Person-first language: Why it matters. Autistichoya. https://<ulink href="http://www.autistichoya.com/2011/08/significance-of-semantics-person-first.html">www.autistichoya.com/2011/08/significance-of-semantics-person-first.html</ulink></bibtext> </blist> <blist> <bibl id="bib5" idref="ref13" type="bt">5</bibl> <bibtext> Buijsman, R., Begeer, S., & Scheeren, A. M. (2023). 'Autistic person' or 'person with autism'? Person-first language preference in Dutch adults with autism and parents. Autism, 27 (3), 788-795. https://doi.org/10.1177/13623613221117914</bibtext> </blist> <blist> <bibl id="bib6" idref="ref17" type="bt">6</bibl> <bibtext> Collier, R. (2012). Person-first language: Noble intent but to what effect? 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Massachusetts Advocates for Children. https://<ulink href="http://www.massadvocates.org/news/ask-a-self-advocate-the-pros-and-cons-of-person-first-and-identity-first-language">www.massadvocates.org/news/ask-a-self-advocate-the-pros-and-cons-of-person-first-and-identity-first-language</ulink></bibtext> </blist> <blist> <bibtext> Olkin, R. (2022, March 29). Conceptualizing disability: Three models of disability. American Psychological Association. https://<ulink href="http://www.apa.org/ed/precollege/psychology-teacher-network/introductory-psychology/disability-models">www.apa.org/ed/precollege/psychology-teacher-network/introductory-psychology/disability-models</ulink></bibtext> </blist> <blist> <bibtext> Pripas-Kapit, S. (2020). Historicizing Jim Sinclair's 'Don't Mourn for Us': A Cultural and Intellectual History of Neurodiversity's First Manifesto. In S. K., Knapp (Ed.), Autistic community and the neurodiversity movement (pp. 23-39). Palgrave Macmillan. https://doi.org/10.1007/978-981-13-8437-0_2</bibtext> </blist> <blist> <bibtext> Rosa's Law, Pub. L. No. 111-256 (2010), https://<ulink href="http://www.govinfo.gov/app/details/PLAW-111publ256">www.govinfo.gov/app/details/PLAW-111publ256</ulink>.</bibtext> </blist> <blist> <bibtext> Sabnis, S., & Srisarajivakul, E., (2023). Foundations and history of disability justice. Communiqué, 52 (4), 17-18.</bibtext> </blist> <blist> <bibtext> Smith, M., Horton, R., & Fitzgibbons, M. (2023). Preferences for person-first language and Identity-first language in autistic communities. Journal of Critical Study of Communication and Disability, 1 (2), 106-140. https://doi.org/10.48516/jcscd_2023vol1iss2.13</bibtext> </blist> <blist> <bibtext> Taylor, B. A., LeBlanc, L. A., & Nosik, M. R. (2019). Compassionate care in behavior analytic treatment: Can outcomes be enhanced by attending to relationships with caregivers? Behavior Analysis in Practice, 12 (3), 654-666. https://doi.org/10.1007/s40617-018-00289-3</bibtext> </blist> </ref> <aug> <p>By Reva Mathieu-Sher; Bridget Green and Kara Mcgoey</p> <p>Reported by Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib15" firstref="ref1"></nolink> <nolink nlid="nl2" bibid="bib16" firstref="ref2"></nolink> <nolink nlid="nl3" bibid="bib13" firstref="ref3"></nolink> <nolink nlid="nl4" bibid="bib18" firstref="ref4"></nolink> <nolink nlid="nl5" bibid="bib10" firstref="ref5"></nolink> <nolink nlid="nl6" bibid="bib14" firstref="ref10"></nolink> <nolink nlid="nl7" bibid="bib12" firstref="ref12"></nolink> <nolink nlid="nl8" bibid="bib17" firstref="ref14"></nolink> <nolink nlid="nl9" bibid="bib11" firstref="ref20"></nolink>
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  Data: A compassionate care framework considers the neurodiverse needs of autistics and challenges the practitioner to think beyond their own comfort levels, preferences, and understanding of "correct" labels to consider how their language and actions support or create barriers for students. The foundational goals of compassionate care seek to build relationships with all stakeholders in the areas of respect, trust, and empathy. The use of language and the actions the practitioner takes to build trust and respect exemplify the implementation of a compassionate care-based framework to support autistics.
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