Screening Tests and Tools for Autism in Adulthood

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Introduction: Meet Reginald…

Reginald is 49 years old, and has struggled in social relationships for much of his life. He enjoyed courses in astronomy in university, and is passionately interested in anything to do with space. Since university, Reginald hasn’t been able to keep a job for long because of communication and relationship issues in the workplace. Some time ago, he was told by a family member that he may be autistic. After some thought, Reginald decided to follow up to see if this might be true. He was interested in better understanding himself, and finding help to address areas of challenge. After he talked with someone at the local Autism Society office and his family doctor, Reginald was referred for a comprehensive diagnostic assessment for autism. While waiting for that assessment, he was told about an autism screening tool (questionnaire) that he could complete. He was told that this tool could contribute to his formal autism assessment.

As illustrated by Reginald, adults may want an assessment for autism for a variety of reasons – perhaps to gain greater self-awareness or to find needed support and services.¹ Researchers suggest that someone might seek an autism assessment if experiencing mental health issues, neurodevelopmental challenges, relationship concerns, and/or problems in employment or school.² Unfortunately, there are barriers to attaining a formal diagnostic assessment. Barriers include lengthy wait times, financial cost, lack of autism specialists in adulthood, concern that conveying one’s autism features will not be believed, and/or perhaps a lack of trust in institutions.¹

To achieve greater self-understanding, an individual may turn to the internet for autism-related information.¹ The internet can provide knowledge and resources related to autism, including information about what traits or features determine an autism diagnosis. Online (or non-online) screening tools offer personalized information about autism traits. Some clinicians who assess for autism also hope that screening tool results can help provide greater efficiency in autism assessment and diagnostic services⁴.

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In this review, we offer examples of self-report autism screening tools for adults who do not also have an intellectual disability. Brief information is given about the testing of the screening tools. For more detailed information about each autism screening tool, please consult sources in the References section at the end of this report, such as reviews conducted by Wigham and colleagues² and Baghdadli and colleagues.⁴ Those research reviews describe the strengths and challenges of the various tools.

Please note that this report does not include:

- diagnostic tools or processes used in a formal autism diagnostic assessment,

- screening tools that only examine one particular feature or trait of autism,

- screening tools for children/youth under 16 years of age.

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Challenges with Autism Screening Tool Use

While the internet or other sources provide autism-related information, there also is risk of misinformation.¹ One may find questionnaires or screening tools that claim to screen for autism. But it is important to carefully and critically assess a tool’s rigor. Rigor means the strengths and challenges of a particular tool in ensuring that it accurately identifies whether or not one has autism traits. While tools may appear to offer personalized information, caution is needed in questioning the accuracy of information given.

In their research review of autism screening tools, researchers concluded that, “specificity for diagnosis was relatively low.”^2(p287) Specificity refers to a tool’s ability to accurately identify an individual who does not have a given condition.

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Current autism screening tools have limitations in precisely differentiating between autism and other existing conditions or issues.^2,3,5 Therefore, screening tools are described to have limited diagnostic potential in and of themselves. Instead, a comprehensive diagnostic assessment with trained clinicians is strongly recommended by reviewers of these tools.^2,4,5 A team of researchers stated that screening tool ratings may not be reliable for determining autism. Instead, they indicated that these screening tools can be, “used to aid and guide clinicians in diagnosis.”^3(p4)

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Selected Examples of Autism Screening Tools

Below are three examples of autism screening tools for adults without intellectual disability. These were selected because each tool screens for autism, and has been reviewed in the research literature.

Autism Spectrum Quotient (AQ)

The AQ is a self-administered tool available online at: https://novopsych.com.au/wp-content/uploads/2023/03/Autism-Spectrum-Quotient-AQ.pdf. It screens for traits associated with autism among individuals 16 years and older without intellectual disability. It was created by Dr. Simon Baron-Cohen and colleagues.⁶  

The AQ has fifty questions that examine five broad areas: social skill, attention switching, attention to detail, communication, and imagination. Each question is brief, and is answered on a scale that ranges from “definitely agree” to “definitely disagree”.⁶

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The primary use of the AQ is to identify traits associated with autism. The authors indicate that it may be a helpful part of a comprehensive diagnostic assessment. One study found that AQ scores may not always differentiate autism traits, particularly if an individual enjoys social interactions despite them being difficult.⁷ In another study, the consistency between ratings on the AQ and the results of more conventional and comprehensive diagnostic processes (the Autism Diagnostic Interview-Revised, and the Autism Diagnostic Observation Schedule-Generic) was not strong.⁸  Based on a review, researchers concluded that, “due to the low levels of specificity, the AQ is not a reliable indicator of which people should progress to a full ASD assessment.”^2(p296)

There is a short form version of the AQ known as the AQ-10. This is a 10-question version of the full AQ. Caution is needed in considering and/or using this assessment because it is less precise than the full AQ.⁹ However, the National Institute for Health and Care Excellence (NICE) guidelines have recommended the AQ-10 for screening purposes in determining the potential need for a full autism assessment.¹⁰

Ritvo Autism Asperger Diagnostic Scale – Revised (RAADS-R)

The RAADS-R is a questionnaire for autism which was developed for adults without intellectual disability. It was created by Dr. Riva Ariella Ritvo and colleagues,¹¹ and has eighty items divided into four areas. These areas are: social relatedness, circumscribed interests, language, and sensory motor. Each question can be answered in one of four ways: “True now and when I was young,” “True only now,” “True only when I was younger than 16,” and “Never true.” The RAADS-R comes with a scoring guide. It has been self-administered, but was initially designed to be administered by a clinician.

Although some use the RAADS-R within a clinical assessment, recent research has used the tool by itself as a self-administered (or self-completed) scale. As a screening tool completed apart from a more fulsome autism diagnostic assessment, the RAADS-R was reported to lack sufficient accuracy.³ Jones and colleagues therefore conclude that the RAADS-R “is not a suitable screening tool for adults awaiting autism assessments.”^3(p1)

Aspie Quiz

The Aspie Quiz is a self-administered tool that was developed by Dr. Leif Ekblad in 2013.¹² It aims to indicate neurodiverse traits in individuals 16 years and older who do not have an intellectual disability. The Aspie Quiz has 119 questions that focus on five broad areas: talent (e.g., strong interests, noticing patterns), perception, communication, relationships, and social. Each question identifies the presence of a neurodiversity trait or characteristic, with response options of “No/never”, “A little”, “Yes/often”, or “Don’t know”.

One’s score on this tool is reported to indicate the probability of being “atypical” (noted on the website as “autistic/neurodiverse/Aspie”) or typical (noted as “neurotypical”). The Aspie Quiz can be found at https://rdos.net/eng/Aspie-quiz.php.

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In considering the Aspie Quiz, it is important to remember that its focus is on neurodiversity which is not the same as autism.¹² Also, there is limited examination of the validity of the Aspie Quiz. This suggests the need for more evaluation of this quiz.

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Final Reflections

Researchers strongly suggest caution in using an autism screening tool due to possible accuracy concerns.^2,4,5 There is additional concern that these tools are particularly limited in differentiating autism versus other conditions such as mental health challenges.^2,3

While recognizing these cautions, autism screening tools may be helpful in contributing to a comprehensive autism diagnostic assessment. This kind of comprehensive assessment is crucial for accurately determining an autism diagnosis and in turn, helping one in their search for needed services.

For more information about an autism assessment in your area, you speak with your family doctor. Also, information is likely available at your local or provincial/territorial Autism Society or advocacy office. A listing of autism resources across Canada is available on the AIDE Canada website: https://aidecanada.ca/resources/locate/asset-maps.

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References

1. Lewis, L. F. (2016). Exploring the experience of self-diagnosis of autism spectrum disorder in adults. Archives of Psychiatric Nursing, 30(5), 575–580. https://doi.org/10.1016/j.apnu.2016.03.009
2. Wigham, S., Rodgers, J., Berney, T., Le Couteur, A., Ingham, B., & Parr, J. R. (2019). Psychometric properties of questionnaires and diagnostic measures for autism spectrum disorders in adults: A systematic review. Autism, 23(2), 287–305. https://doi.org/10.1177/1362361317748245
3. Jones, S. L., Johnson, M., Alty, B., & Adamou, M. (2021). The effectiveness of RAADS-R as a screening tool for adult ASD populations. Autism Research and Treatment, 2021, 1-6. https://doi.org/10.1155/2021/9974791
4. Baghdadli A., Russet F., & Mottron L. (2017). Measurement properties of screening and diagnostic tools for autism spectrum adults of mean normal intelligence: A systematic review. European Psychiatry, 44, 104-124. https://doi.org/10.1023/10.1016/j.eurpsy.2017.04.009
5. Sizoo, B.B., Horwitz, E. H., Teunisse, J. P. W. M., Kan, C. C., Vissers, C. T. W. M., Forceville, E. J. M., Van Voorst, A. J. P., & Geurts, H. M. (2015). Predictive validity of self-report questionnaires in the assessment of autism spectrum disorders in adults. Autism: The International Journal of Research and Practice, 19(7), 842–849. https://doi.org/10.1177/1362361315589869
6. Baron-Cohen, S., Wheelwright, S., Skinner, R., Martin, J., & Clubley, E. (2001). The Autism-spectrum Quotient (AQ): Evidence from asperger syndrome/high-functioning autism, males and females, scientists and mathematicians. Journal of Autism and Developmental Disorders, 31(1), 5-17.
7. Bishop, S. L. & Seltzer, M. M. (2012). Self-reported autism symptoms in adults with autism. Journal of Autism and Developmental Disorders, 42(11), 2354–2363. https://doi.org/10.1007/s10803-012-1483-2
8. Ashwood, K. L., Gillan, N., Horder, J., Hayward, H., Woodhouse, E., McEwen, F. S., Findon, J., Eklund, H., Spain, D., Wilson, C. E., Cadman, T., Young, S., Stoencheva, V., Murphy, C. M., Robertson, D., Charman, T., Bolton, P., Glaser, K., Asherson, P., … Murphy, D. G. (2016). Predicting the diagnosis of autism in adults using the Autism-Spectrum Quotient (AQ) questionnaire. Psychological Medicine, 46(12), 2595–2604. https://doi.org/10.1017/S0033291716001082
9. Cheung, T. C. K., Reza, T. B., Pereira, C. F., Mukhi, S., & Niemeier, M. (2023). Limited reliability and validity of the Autism Spectrum Quotient short form (AQ-10) to screen autistic traits in undergraduate students. Journal of Autism and Developmental Disorders, 53(7), 2919–2920. https://doi.org/10.1007/s10803-022-05889-1
10. National Institute for Health and Care Excellence (NICE). (2021). Autism spectrum disorder in adults: diagnosis and management. NICE Clinical Guideline [CG142], 27 June 2012; Updated: 14 June 2021; https://www.ncbi.nlm.nih.gov/books/NBK554918/
11. Ritvo, R. A., Ritvo, E. R., Guthrie, D., Ritvo, M. J., Hufnagel, D. H., McMahon, W., Tonge, B., Mataix-Cols, D., Jassi, A., Attwood, T., & Eloff, J. (2011). The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R): A scale to assist the diagnosis of autism spectrum disorder in adults: An international validation study. Journal of Autism and Developmental Disorders, 41(8), 1076–1089. https://doi.org/10.1007/s10803-010-1133-5
12. Ekblad, L. (2013). Autism, personality, and human diversity: Defining neurodiversity in an iterative process using Aspie Quiz. SAGE Open, 3(3), 1–14. https://doi.org/10.1177/2158244013497722

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