Autistics are an extremely diverse and resilient group of people living with a complex condition that includes a wide spectrum of both benefits and impairments. Despite facing many debilitating personal challenges, it is often not autism itself that we find most difficult to live with, but rather how society treats autistics that is so disabling. It is the words that neurotypicals use to describe autism and autistics that hurt our community most; these words stigmatize our diagnosis, pathologize our needs, limit our opportunities, and curtail our rights. As information professionals, we use words for the greater good: to share information that will enlighten our communities and improve lives, but even with the best of intentions, our words can be harmful. We must never underestimate the power of the words we use, but always remember that words create meaning, develop perception, and influence behavior. They can be "abling" or "dis-abling", inclusive or exclusionary. We can choose to help our autistic comrades by using our words and influence for their good — by taking their rallying cry, “Nothing about us without us,” to heart and joining them in the fight to make society equitable and inclusive for all. Following are three ways in which information professionals can help the autistic community.
For years, autistics have had no control over how autism is portrayed by the medical establishment or the media. The medical “deficit” model of disability has long predominated, and has had a strong influence on mainstream portrayals of autism. Models of disability are important because they influence how people in our society perceive and treat disabled people, from federal policy to neighborhood clubs. While disabled activists have fought hard to push for a fairer and more accurate description of disability (e.g., the social or neurodiversity models), it has been an uphill battle to change public opinion. The stigma that clings to autism will never be removed if we continue to embrace a model of autism that pathologizes autistic ways of being in the world; instead, we will continue to be bombarded by pernicious stereotypes that depict autistics as broken objects of contempt and/or pity. This widespread ignorance and prejudice are the reasons why we need to move beyond mere awareness that autism exists, to true understanding of autistic lives, needs, and challenges (both biophysical and social). Only then can we achieve true inclusion in the wider mainstream community.
According to the medical model, disability is solely the problem of the person who has either been born or otherwise become abnormal in some way, and it must be fixed or cured by medical professionals. It is an individual tragedy resulting from a specific health condition and is outside the responsibility of society (except perhaps financially). The social model of disability uses very different language. It posits that, while people with disabilities do have challenges related to their impairments, they are not disabled by them but rather by the physical and social barriers that mainstream society erects, which leads to discriminatory and exclusionary practices and attitudes being used against the disabled. By changing our perception of autism to one based on the social model of disability, we can create a more inclusive society that values and respects autistic people just as it does all others. One way of doing this is to use a strengths-based approach to disability, as exemplified by the journal Autism in Adulthood, which emphasizes:
- Referring to autism as a condition or disability instead of as a disease or illness
- Using neutral terms such as “typically developing” or “non-autistic” rather than “healthy” or “normal”
- Avoiding emotional phrases such as “suffering from autism”
- Referring to “co-occurring” or “secondary” conditions instead of “comorbid” conditions
- Referring to autistic characteristics in a neutral or positive manner, as opposed to as symptoms or deficits (e.g., “autistic traits,” “characteristics of autism,” or “features of autism” instead of “symptoms of autism,” and “communication differences” instead of “communication deficits”)
In a world where autistics do not have control over how they are represented in mainstream society, the influence of allies is vital. From content providers to publishers, librarians to software designers, members of the information professions have the power to change society’s perception of autism. Many of you are already doing great work in the areas of diversity, equity, and inclusion; like NISO, you can also add increasing accessibility to your endeavors, and make working with and learning from the “actually autistic” community a priority. Include autistics in research and design, tailor content to be accessible for all, and talk to autistics to find out what research they want done, what barriers they face, and what they believe can be done to improve their quality of life. And do not be intimidated by the idea that communication with autistics is challenging; while we may communicate and process information differently than other people, communication barriers can be overcome if autistics and neurotypicals are committed to coming together as equals, sharing their needs, learning from each other, and treating each other with respect. Remember, true communication is a two-way street, and requires equal give and take from participants.
Additionally, there are guidelines you can follow to get the process started. The Academic Autism Spectrum Partnership in Research and Education has created multiple guides for professionals to utilize in their work, and research passports like the one discussed in Toward Empathetic Autism Research: Developing an Autism-Specific Research Passport (Ashworth et al., 2021) are also extremely valuable learning tools. The passport includes sections that autistic research participants and co-designers fill in with important information regarding their needs, preferences, and best supports, which research team members can then use to make the process more empowering and inclusive. There is also a section at the end that neurotypical researchers can fill in with relevant information about themselves, so that both sides can get to know each other better.
Remove Systemic Barriers
There are two common myths about Universal Design for Learning (UDL): one, that it only applies to academic instruction, and two, that it only benefits disabled students. First, UDL is a framework that provides strategies and guidelines to help professionals create products that are accessible and comprehensible for all users, regardless of their learning style, background knowledge, language level, cultural background, disability status, etc. It effectively widens the reach of your work and increases your product’s impact. A good starting point is the Center for Applied Special Technology (CAST), which is an invaluable resource for professionals to learn about UDL. While frontloading information and technology can be rather time consuming at first, it is always better to include UDL-based practices from the beginning of a project rather than having to retrofit your product after the fact, as it saves time, effort, and cost in the long run.
UDL consists of three main guidelines, and calls for multiple means of representation (of content), engagement (with content), and expression (of knowledge) in order to optimize learning. Providing important information in multiple modalities (e.g., vision, hearing, touch) and providing information in an adjustable format (e.g., text that can be enlarged, page colors that can be changed, captions and transcripts that can be read, sound modification, ability to change the speed of reading) are important strategies for increasing comprehensibility. Other approaches include:
- Providing hyperlinks that take readers to “non-required” content that provides either background information or extended knowledge they might find helpful
- Illustrating important ideas through multiple types of media (e.g., combining text with relevant images or graphs)
- Choosing font styles that are easy to read and do not distract from the content
- Providing sufficient contrast between the text and its background
- Allowing users direct access to video so that they can control playback features
Combating widespread misinformation and ignorance about autism by educating the mainstream public is one of the most valuable contributions information professionals can make to autistics’ fight for equality. Never underestimate the power of your words to make the world a better place for all.
Ashworth, M., Crane, L., Steward, R., Bovis, M. & Pellicano, E. (2021). Toward empathetic autism research: Developing an autism-specific research passport. Autism in Adulthood (online ahead of print). http://doi.org/10.1089/aut.2020.0026
Center for Applied Special Technology (n.d.). The UDL guidelines. https://udlguidelines.cast.org/
Dougherty, P. (2021, August 16). Inclusive Course Design: Implementing the UDL Guidelines [Lecture notes]. Canvas. https://canvas.calpoly.edu/courses/47193/pages/representation-overview?module_item_id=666185
Information for authors. Autism in Adulthood. https://home.liebertpub.com/publications/autism-in-adulthood/646/for-authors
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.