Guidelines to Assist in Autism Diagnostic Assessments with Females: A Delphi Study

Abstract

Purpose: While growing evidence highlights the challenges faced by autistic females during diagnostic assessments, it remains unclear how well this research is applied in clinical practice. This study aimed to gather consensus among clinicians on recommendations for autism assessments to improve diagnostic validity for cis-gendered females.

Method: A three-round Delphi study was conducted with registered healthcare professionals experienced in conducting autism diagnostic assessments with females.

Results: Thematic analysis of Round 1 responses identified five themes: Attributes of the Assessor, Post-Clinical Qualification Education and Learning, Diagnostic Tools, Questions Asked, and Sources of Information. These themes produced 28 statements evaluated in Rounds 2 and 3. Eighteen reached 80% consensus in the final round. Experts emphasized the important of assessors having strong knowledge of research into autism in women, co-occurring conditions, other developmental conditions, and masking. Ongoing professional development on autism in women was considered essential and it was recommended that new assessors shadow female assessments. Experts agreed the ADOS-2 is not always useful for females, whereas screening tools can provide valuable narrative insights, though these need to be interpreted carefully due to potential male bias. Experts supported including more prompts to explore subtle differences in social communication and repetitive patterns of behaviour and stressed the importance of masking behaviours and experiences across different relationships. Masking should also be considered when interpreting informant information.

Conclusions: Findings reveal inconsistencies in how clinicians consider sex-related factors in autism assessments, highlighting the need for formal guidance. The next steps will be to develop this guidance, incorporating research evidence, the perspectives of autistic women and girls, and Delphi results. This aims to improve the experience, and accuracy of diagnosis for girls and women undergoing autism assessment, increasing consistency across services, and supporting clinicians.

Community Brief

Why is this an important issue?

Research tells us that women and girls find it difficult to get a diagnosis of autism. It can take a long time for them to get a diagnosis, and they may be wrongly diagnosed with another condition. Autism can look different in men and women, and professionals might not be able to pick up on these differences. Women can also mask (or hide) their autism from others during their assessment.

When a person has an assessment for autism, professionals in the UK follow the instructions of the NHS and the National Institute for Health and Care Excellence. However, these do not give professionals advice on how to assess women.

What was the purpose of this study?

This study looked at what professionals think is important for assessing women for autism. In this study, we were thinking about cis-gender autistic females (that is, a person whose gender identity matches the sex assigned to them at birth).

What did the researchers do?

Participants in this study were 34 professionals, such as Psychologists, Speech and Language Therapists, and Psychiatrists in the UK. They all had experience doing autism assessments.

We used a Delphi method. First, we asked these professionals how they assess women for autism. By looking for themes in their answers, we developed 18 statements that reflected each theme. Next, we gave these statements to the same professionals and asked them how much they agreed or disagreed with each statement. We asked professionals to do this twice to see whether they had changed their mind. We found the percentage of how much participants agreed with each statement. If this percentage was more than 80%, meaning most professionals agreed with it, it is an important part of autism assessments with women. This helps us to identify what best practice ‘should’ and ‘could’ involve.

What were the results and conclusions of the study?

There were differences between professionals in how they assess women for autism. This tells us that professionals need more guidance. The professionals agreed that they need to have a strong knowledge of the research into autism in women, masking, and other diagnoses that may be present. Screening tools, or questionnaires, that look at autistic traits were thought to be useful. Screening tools for other diagnoses were not recommended. Professionals want to ask questions about masking and camouflaging. Professionals think they should ask more questions and ask for more detail when assessing women. They did not think it would be helpful to ask questions about periods and menopause.

What is new or controversial about these findings?

These findings help us to identify what professionals think should be happening in an autism assessment with women.

What are potential weaknesses in the study?

Participants dropped out this study between stages. This is a small group of people, so we cannot say for sure that these are the views of most professionals in the UK. The professionals that took part were mostly of White ethnicity. This could lead to bias in the results.

How will these findings help autistic adults now or in the future?

The next steps will be the developing a document with guidance made up from other research, the voices of autistic women, and the results of this study. We hope this will make autism assessments of women more consistent and effective.