Serving Autistic Adults

NISO members’ dedication to improving diversity, equity, inclusion, and accessibility in the information community is laudable. The number of DEI-related workshops at NISO Plus 2021 was a clear example of their dedication to social justice, and the formation of a DEI committee is proof positive that they are serious about making real, meaningful change. One group that is regularly overlooked when discussing DEI-related issues is the disabled, due to the fact that ableism is so deeply ingrained in our culture as to be practically invisible to society at large. The need for equity for the disabled is often forgotten, particularly for those with “invisible disabilities” like autism; because autistic voices have been silenced for so long, their true needs have frequently gone unmet. Thankfully, the dawn of the information age has provided unparalleled opportunities for the rise of a proud, resilient autistic community, whose collective voice is making itself known both online and off. With widespread accessibility to the internet, the small world of autistics has opened dramatically; per Judy Singer, “The impact of the Internet on autistics may one day be compared to the spread of sign language among the deaf” (1999, p. 67). The internet has empowered autistics by breaking down barriers to information sharing, fostering social connectedness, and enabling them to create and disseminate information important to their community (Fisher and Bishop, 2015). 

Obtaining long-denied access to vital information has enabled autistics to participate in a wider world; one that allows them to pursue the autonomy they need to live authentic lives. Unfortunately, this forward momentum has slowed, as a result of continuing lack of opportunity and the inaccessibility of important resources. Because the medical deficit model of autism remains the predominant rhetoric in mainstream society, autistics are still perceived as “defective” and without a voice; consequently, they are not considered “experts” on autism (despite their lived experience), and their needs and opinions are often discounted or ignored. For neurotypicals (i.e., neurologically typical) who wish to be true allies and help change the ableist status quo, the best way to meet the needs of autistic consumers is to ask them. There are a wide variety of means available for doing this, including performing an equity audit of your organization; hiring autistic consultants to educate you and your organization about autism and the needs of autistics; recruiting autistic participants for UX and UI research; and most important of all, by hiring autistic employees and working with them to cultivate a truly inclusive workplace. Of course, a paradigm shift of this magnitude takes time; in the interim, here are some ways equity-focused individuals and organizations can work to meet the needs of the autistic community.

Eradicating ableist language

One of the most cost-effective ways information professionals can increase information equity for autistics is by removing ableist language from content. Like other kinds of unconscious bias, people often do not realize that what they are saying or writing is harmful to others. Per the “Information for Authors” web page of the international journal Autism in Adulthood, “Language is a powerful means for shaping how people view autism. If researchers take steps to avoid ableist language, researchers, service providers, and society at large may become more accepting and accommodating of autistic people” (n.d.). Autism in Adulthood is a superb example of how inclusive practices enable autistics to fully participate in important endeavors, as autistics serve as editorial board members, peer reviewers, audience, and authors for this innovative publication. To spread awareness of ableism and ways to combat it,  it includes suggestions along with the more standard submission guidelines for how researchers can modify their writing to feature more inclusive language. Topics include “avoiding ableist language,” “strengths-based vs. deficit-based language,” “person-first vs. identity-first language,” and more general guidelines for writing about disability.

Increasing accessibility

Inaccessibility of products and services is a major barrier for autistics. Text simplification systems increase readability and understanding of text, without changing the meaning, by simplifying the vocabulary and syntax of a given document (Martin et al., 2020). The easy read format was specifically designed for individuals with cognitive and learning disabilities but is also highly beneficial for second-language learners, people with low literacy, and busy people who prefer to learn important information as quickly and easily as possible. Easy-read documents provide valuable information in a very simple style, utilizing short sentences, uncomplicated vocabulary (definitions are provided for difficult words or jargon when necessary), and text supported by photos or symbols. Plain Language (PL) is another format that increases accessibility. It features clear, concise writing, short sentences (one idea per sentence), and also forgoes the use of jargon (Vollenwyder et al., 2018). Of course, whether information is accessible or not depends on more than just the words themselves, and, while the autism community has a robust online presence and many members obtain the bulk of their information from internet sources, countless websites remain inaccessible due to their design. To help ameliorate this problem, the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) worked directly with autistics to create a set of guidelines for improving the accessibility of websites. Their suggestions include:

• Providing a simple, consistent navigation and highly consistent site behavior for increased ease of operation.

• Making content as short as possible without sacrificing precision and specificity, to reduce cognitive burden.

• Using simple, concrete icons or images to communicate redundant information with text and accommodate multiple ways of understanding information.

• Being specific and precise in language use; avoiding colloquialisms, idioms, and ambiguity to accommodate difficulties with language pragmatics.

• Providing at least one low-contrast, neutral color palette option to accommodate sensitive vision.

All of the AASPIRE guidelines can be followed with little or no additional cost, and require no special expertise beyond that of traditional web programming skills (Raymaker et al., 2019).

Autistic participation in UX & UI

While researchers and designers are beginning to see the value of including autistics as active stakeholders in the development of supports, there has been very little research done with autistics to date, and even less with adult participants. Most autism research is still performed by neurotypicals with input from neurotypical “autism experts” and/or proxies (e.g., caregivers). This lack of autistic representation has resulted in continued misconceptions of autistic people’s abilities, needs, and challenges; development of interventions and supports that are unhelpful and even harmful; and the further disabling of autistic individuals by society. This, despite the fact that “opportunities for autistic people to be meaningfully involved in all aspects of technology design and evaluation can greatly improve the alignment between technologies and the needs and perspectives of autistic people” (Sturm et al., 2018). 

User participatory design

There is more to design than the development of a profitable product or service. Designers, particularly those interested in creating technologies for use by members of marginalized communities, should prioritize the social justice aspect of their work and meaningfully partner with community members to learn what resources they want, and design them so they are truly accessible. User participatory design (UPD) is a collaborative design process in which the user is not just an informant or evaluator, but is actively involved in the process from beginning to end, even to the point of being a co-designer. UPD is considered one of the best methods for truly understanding the target audience’s needs, thus enabling teams to develop truly effective systems and technologies. Community-based participatory research (CBPR) is one of the most inclusive of the UPD methods, as its goal is the creation of an equal partnership between the designer/researcher and user community in all phases of the project. Per Allison Druin, there are four roles stakeholders can take in the user participatory design process (Sturm et al., 2018):

• As users (by using technologies while being observed)

• As testers (by testing prototypes and being observed/asked questions about their use)

• As informants (by playing some part in the design process when invited to do so by researchers)

• As true design partners (by being equal stakeholders throughout the design process)

AASPIRE CBPR guidelines

Meaningful inclusion of autistic adults in the research/design process can be challenging due to differences in communication and information processing, but it can be done with the right accommodations. However, this can only be accomplished by designers with a healthy respect for their autistic participants, who must make the extra effort to make all participation options accessible, and then let the users take the lead in what they feel comfortable doing. The AASPIRE team has used CBPR in research conducted with autistic adults with excellent results. Dedicated to promoting the widespread adoption of inclusive research practices, in 2019 they published a paper detailing their practice-based guidelines for working with autistic researchers, community partners, and research subjects. Although it requires additional work throughout the process to develop communication methods and documents that are fully accessible to their autistic partners, AASPIRE maintains these standards because “unnecessarily excluding participants from research, obtaining information from proxies when it would be possible to obtain it from the participants, and denying individuals the right to make their own decisions are violations of rights” (Nicolaidis et al., p. 2017). Below are some of AASPIRE’s recommendations for the inclusion of autistic adults as study participants:

• Make the consent process as accessible as possible:

  • Adapt consent forms to increase accessibility (e.g., by making language simpler and more concrete, removing sections that unnecessarily hinder comprehension, adding images, and providing text-to-speech versions of online consent forms). 

• Offer multiple modes of participation:

  • For surveys, consider offering in-person, telephone, and online options. 

  • For qualitative interviews, offer both synchronous and asynchronous modes of participation, and allow both oral and written communication. 

• Adapt survey instruments for use with autistic adults:

  • Whenever possible, use a participatory process to assess, create, and/or adapt instruments. 

  • If needed, add prefaces to increase precision or explain context; and modify items to simplify sentence structure, remove the passive voice, and clarify pronouns. 

  • If needed, substitute difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms. In cases where a substitution is not possible, add hotlinks that define the term or offer examples or clarifications. 

• Create accessible qualitative interview guides:

  • Offer participants the option to review materials in advance. 

  • Begin with a preface that clearly explains the type of answers you wish to receive. 

  • Use concrete questions, asking for stories about specific experiences rather than answers to questions about abstract concepts. 

  • Work with community partners to ensure that questions are precise enough, and provide enough context, to be answered. 

When done correctly, CBPR empowers community participants by ensuring an equal partnership between the research team and autistic study participants. Another unforeseen (and exceptional) consequence is that some CBPR studies have resulted in the subsequent employment of autistic community participants, further proving that autistics are fully capable of achieving success, when they receive equal opportunities and meaningful supports.

Implications for information professionals

As information professionals, we all have a role to play in the advancement of information equity for all. The social justice movement is gaining momentum, but we must remember that there are many marginalized communities still rightfully seeking empowerment. Per the Centers for Disease Control, 2.2% of the adult population in the U.S. is autistic (CDC, 2019). Most of these individuals are inveterate consumers of information and would increase their use of the products and services offered by the information community if said products and services were made accessible to them. This increase in accessibility is vital to the professional and personal well-being of the autistic community at every level, and we are in an influential position to help autistics obtain true information equity, thereby bringing NISO’s vision of “a world where all can benefit from the unfettered exchange of information” one very critical step closer to fruition.

References

Centers for Disease Control and Prevention. (2019). Autism spectrum disorder (ASD). https://www.cdc.gov/ncbddd/autism/features/adults-living-with-autism-spectrum-disorder.html

CHANGE. (2016). Free easy read resources. https://www.changepeople.org/blog/december-2016/free-easy-read-resources

Fisher, K.E., & Bishop, A.P. (2015). Information communities: Defining the focus of information service. In S. Hirsh (Ed.), Information Services Today: An Introduction (pp. 20-26).

Martin, L., Fan, A., de la Clergerie, E., Bordes, A., & Sagot, B. (2020). MUSS: Multilingual unsupervised sentence simplification. arXiv preprint. https://arxiv.org/abs/2005.00352.

Mary Ann Liebert, Inc. Publishers. (n.d.). Information for authors. Autism in Adulthood. https://home.liebertpub.com/publications/autism-in-adulthood/646/for-authors

National Information Standards Organization. (n.d.). Welcome to NISO. https://www.niso.org/welcome-to-niso

Nicolaidis, C., Raymaker, D., Kapp, S.K., Baggs, A., Ashkenazy, E., McDonald, K., Weiner, M., Maslak, J., Hunter, M., & Joyce, A. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism, 23(8), 2007-2019.

Raymaker, D.M., Kapp, S.K., McDonald, K.E., Weiner, M., Ashkenazy, E., & Nicolaidis, C. (2019). Development of the AASPIRE web accessibility guidelines for autistic web users. Autism in Adulthood, 1(2), 146-157. https://doi.org/10.1089/aut.2018.0020

Singer, J. (1999). Why can’t you be normal for once in your life? From a “problem with no name” to the emergence of a new category of difference. In M. Corker & S. French (Eds.), Disability Discourse, (pp. 59– 67). Open University Press.

Sturm, D., Kholodovsky, M., Arab, R., Smith, D.S., Asanov, P. & Gillespie-Lynch, K. (2019). Participatory design of a hybrid Kinect game to promote collaboration between autistic players and their peers. International Journal of Human–Computer Interaction, 35(8), 706-723. https://doi.org/10.1080/10447318.2018.1550180

Vollenwyder, B., Schneider, A., Krueger, E., Brühlmann, F., Opwis, K., & Mekler, E.D. (2018). How to use plain and easy-to-read language for a positive user experience on websites. In: Miesenberger K., & Kouroupetroglou G. (Eds.), Computers Helping People with Special Needs. ICCHP 2018. Lecture Notes in Computer Science, 10896. Springer, Cham. https://doi.org/10.1007/978-3-319-94277-3_80