Commentary: Toward a more comprehensive autism assessment: the survey of autistic strengths, skills, and interests

Abstract

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The current state of science is constantly changing regarding autism (mis) conceptions (1). Autism research is not only an arena of the status quo of the medical paradigm perpetuated by discourses based on deficit-view accounts of autistic people, but also an arena for bias present in the mindset of researchers; hence, no science is ideology-free (2, 3). Sexism towards women’s agency in the publication of scientific reports on autism, particularly since the development of this term, remains under-investigated. For instance, in 1926, Grunya Efimovna Sukhareva, a Soviet Ukrainian child psychiatrist, differentiated gender differences in autism and separated autistic agency from schizoid traits (4). Despite her contributions, Sukhareva did not receive the same recognition as Kanner or Asperger, and her legacy is still largely ignored (5), further suggesting that science free from ideology does not exist.

The call for shifting the paradigm from a purely medical deficit-based approach to the neurodiversity paradigm which treats differences with dignity and respect is active (6). Shifting the paradigm may lead to investigating what autistics can do instead of what they cannot do (7). Some researchers are responding to this call, like Woods and Estes (8), by rethinking autism in terms of strengths, without necessarily ignoring areas for improvement (9). Considering the imbalance between studies with a deficit-based and strengths-based approach, the SASSI survey by Woods and Estes (8) is indeed a response to the call to action the neurodiversity paradigm has been urging for decades (10–12). Since 2013, Dr. Sara Woods, a neurodivergent clinical psychologist, developed the survey after years of experience and research with autistics at the UW Autism Center in the USA and Dr. Annette Estes, director of the center, revised the SASSI. In both versions of this survey, the questions are based on the strengths of autistics (e.g. honesty and direct communication formulated based on consistent feedback from autistic individuals and their family members, who reported being frequently told they are honest, direct, and sometimes described as having “no filter”; 13–16). This is a significant advancement in autism research, since language in autism is traditionally characterized as an impairment.

Furthermore, SASSI brings a humanistic dialogue centered on the autistic person, not the clinician. The follow-up questions focus purely on the strengths of the individuals such as justice and moral values. The question, “could you think of more examples?” allows extra time for autistics to elaborate their thoughts as they reflect upon their strengths rather than providing most focus on deficits (e.g., “Unusual Eye Contact” item of the ADOS-2; 17).

Woods and Estes’ work demonstrates that researchers with clinical education can reframe their views and methods to embrace autistic experiences. For example, it is documented that autistics have more worries and anxiety than non-autistics about social interaction and how well they will perform it (18). By giving extra time with follow-up questions, the SASSI would be expected to alleviate the stress, anxiety, and worries in face-to-face assessment interactions. It seems that other researchers, especially those from the medical paradigm, are following a similar path as Woods and Estes by not using ableist terminology, such as “high functioning” to refer to adults on the spectrum who do not have intellectual disabilities (19). For instance, the longitudinal study by Clarke and colleagues (2024) carefully crafted the terms more cognitively able (MA) and less cognitively able (LA), thus, avoiding the ableism. This is a small but significant step towards shifting the paradigm, as changing language to refer to autistic people means that these studies in autism do not perpetuate epistemological violence (20–22).

The action for call is also being answered by similar breakthrough projects which, as Woods and Estes, focus on the strengths of neurodivergents. For instance, researchers from the Karolinska Institute in Sweden, with Autistica in the U.K., will release the International Classification of Functioning, Disability and Health (ICF) toolkit for use in education, employment, and healthcare emphasizing strengths and needs of populations with autism and ADHD. This initiative not only focuses on the positive skills of neurodivergent people but also aligns with autistic advocacy for better access to work, rights, and services (14, 23, 24), and supports a shift in autism understanding, as outlined by Huntley et al. (25), with the toolkit based on the ICF framework (26–28). A similar assessment created in Belgium by a father of an autistic child, the Autism Good Feeling Questionnaire (29) is now available in several languages for free.

Woods and Estes hope to further refine the SASSI, including gathering input from autistic adults (the survey is also intended for children). Even though the SASSI is walking towards humanizing autism research in the relationship between clinicians and autistics (30), and it is innovative as it is because it reviews items robustly described as a deficit and disorder, i.e., language and communication (DSM-V) (31), one suggestion is given. According to the authors: “These questions are meant to be asked in interview format as part of a larger clinical interview.” It would be formidable and another advancement for science to test if the SASSI would bring different results when the clinician is autistic versus non-autistic, and if autistic clinicians could provide feedback about their experiences. Doherty et al (32) study declares that when autistic clinicians recognize and disclose themselves as autistics, this has a positive impact on patients’ own recognition and care, therefore legitimizing the autistic agency in the clinical setting. In addition, such a suggestion for the future would not only enhance well-being (33) but also enable more autistic voices in research (34, 35).