Affectivity and Sexuality in Adolescents with Autism Spectrum Disorder from the Perspective of Education and Healthcare Professionals: A Qualitative Study

Round 1

Reviewer 1 Report

This is an interesting and worthwhile paper on an important topic.  My comments, below, are mostly stylistic: 

1. Page 1 lines 40-41 - Please provide additional information/clarification for the sentence that starts "Socio-affective learning is very complex..."  For example, the phrase "is very complex in simulated situations, but much more beneficial in formal, academic situations" is confusing in that complex and beneficial are not opposites nor have any other linguistic relationship.  Please clarify what is meant here. 

2. Page 2 lines 53-54 - Please clarify what process have been adapted and how have they been adapted?  

3. Kudos for bringing in the four outside experts. Gives you work more gravitas. 

4. Page 8 lines 281-289 - I understand these are direct quotes but it might be useful to offer additional explanation as to why such broad ethnic categories (e.g., "a girl from Morocco" - are all girls from Morocco the same?; and "if you talk to an African girl, sexuality doesn't exist" - which is, potentially, offensive.  Please add a statement of clarification here. 

Author Response

Dear reviewer #1,

This is an interesting and worthwhile paper on an important topic. 

Thank you very much for your review. We are very grateful for your time and insightful comments.

My comments, below, are mostly stylistic: 

1. Page 1 lines 40-41 - Please provide additional information/clarification for the sentence that starts "Socio-affective learning is very complex..."  For example, the phrase "is very complex in simulated situations, but much more beneficial in formal, academic situations" is confusing in that complexand beneficial are not opposites nor have any other linguistic relationship.  Please clarify what is meant here. 

You are absolutely right; the sentence was slightly confusing. We have modified the text to make it easier to understand:

Page 1, lines 39-41: “Socio-affective learning is highly complex and, as such, is easier to address in formal situations such as academic settings, where it can therefore be more fruitful”.

2. Page 2 lines 53-54 - Please clarify what process have been adapted and how have they been adapted?  

Actually, as we commented, on the one hand the changes facilitate adaptation, but on the other hand, they make adaptation more difficult due to their disorder. We have added these changes without altering the idea of the sentence and in line with the references proposed.

Page 2, lines 52-53: “(e.g. more democratic educational styles, greater freedom for sexual expression, easier access to sex information, etc.).”

3. Kudos for bringing in the four outside experts. Gives you work more gravitas. 

Thank you very much for your kind words.

4. Page 8 lines 281-289 - I understand these are direct quotes but it might be useful to offer additional explanation as to why such broad ethnic categories (e.g., "a girl from Morocco" - are all girls from Morocco the same? and "if you talk to an African girl, sexuality doesn't exist" - which is, potentially, offensive.  Please add a statement of clarification here. 

Thank you very much for your comment. We have added the following paragraph for clarification:

Page 9-10, lines 291-300: “When discussing the cultural diversity of our area during the focus group sessions, participants refer to people’s general ethnic/cultural background as a way of exemplifying cultural differences in sexuality without going into specific detail about their examples. It goes without saying that these are broad generalisations which do not apply to every person belonging to that particular ethnic/cultural collective. However, we believe that cultural facts and differences regarding sexuality, such as taboos and boundaries, are relevant to sex and affective education. They have specific ways of being dealt with in different cultures, countries, and regions around the world, therefore meriting the inclusion of the participant examples. Moreover, cultural differences are a frequent factor among healthcare professionals when carrying out their daily work.”

We are grateful for your insight and will take it into consideration for future studies focusing more specifically on cultural diversity regarding sexuality.

Author Response File: Author Response.docx

Reviewer 2 Report

This paper reports on four focus groups with a total of 18 participants in one city in the Catalonia region of Spain. The participants--diverse professionals serving autism disorder children/young adults---answered questions about their self assessed skills and resources and educational preparation to adequately serve clients and families around sexuality. 

Because of its narrowly defined sample and lack of attention to contextualizing the qualitative data, the paper does not currently provide a contribution to the literature on ASD that will be useful to the journal's readers. I have one specific methods critique and a broader comment on how the paper is framed.

The authors claim that "A total of 18 participants were split into 4 independent focus groups to reach data saturation." This does not make sense. Thematic saturation is demonstrated by showing that adding additional respondents does not result in additional themes. If the authors did compare themes from the first 2 or 3 groups with those from subsequent groups to assess thematic saturation they need to explain their process.

More importantly, the authors provide almost no information about how services for ASD children and their families are organized and financed in Catalonia.  Such information is necessary to understand the assessments offered by participants. (For example, findings around the need for more or different services are really hard to understand without some context on services accessibility and adequacy. Similarly, findings around training needs can't be informative to others without know a bit about current training requirements and practices for health and education professionals serving these families? The observation that there needs to be more attention to healthcare/education coordination would be more relevant if we knew a bit about how participants or their organizations intercept/interact/coordinate as a function of current policies? Findings around the need for more attention to cultural diversity would make more sense if there were context on the specific cultural and racial/ethnic diversity of the ASD care receiver and care provider populations and the larger community. 

I think the authors should consider a bit of reframing of this study as an assessment of how well a specific community is addressing sexuality among ASD persons and their families. Alternatively, the authors have a specific recommendation for which they want to advocate---a lifelong approach to sexuality with ASD children and their families----and they slip into a prescriptive writing style at various points in the paper. Perhaps the paper would be more impactful if framed as a commentary. 

Author Response

Dear reviewer #2,

Thank you very much for your review. We are very grateful for your time and insightful comments.

We feel that some of your comments may be somewhat generic in nature, which may be the result of using a descriptive qualitative methodology that seeks to explore a reality based on the experiences of the actors involved in order to learn from them and build on them. For this reason, qualitative research cannot be generalised or sometimes extrapolated to other contexts; it can, however, serve as a guide, orientation, or starting point for other studies or for the study itself to develop targeted interventions (analysis of reality).

That said, we have tried our best to respond to your feedback and suggestions, which have truly been of great interest and have forced us to carry out an in-depth review of our study.

1. This paper reports on four focus groups with a total of 18 participants in one city in the Catalonia region of Spain. The participants--diverse professionals serving autism disorder children/young adults---answered questions about their self assessed skills and resources and educational preparation to adequately serve clients and families around sexuality.  Because of its narrowly defined sample and lack of attention to contextualizing the qualitative data, the paper does not currently provide a contribution to the literature on ASD that will be useful to the journal's readers. I have one specific methods critique and a broader comment on how the paper is framed.

Thank you very much for your feedback. We believe that our study correctly identifies the context and participants for readers. Our research contributes basic, unexplored knowledge, such as the experiences of healthcare and education professionals in the coping and management of affectivity and sexuality in children and adolescents with ASD. These professionals, as detailed in point 2.2, work together at the Mental Health Area. We have not found any similar studies in our review of the existing literature on the topic.

It is our belief that it is essential to explore the perspectives of all the professionals involved to be able to address the issue in a way that is in line with professionals and patients alike. We also believe that our results are quite clear as described and open up lines of intervention to improve the way this issue is being tackled.

In the future, we intend to enrich this qualitative study with new qualitative and quantitative perspectives on the experiences of individuals with ASD and their families.

2. The authors claim that "A total of 18 participants were split into 4 independent focus groups to reach data saturation." This does not make sense. Thematic saturation is demonstrated by showing that adding additional respondents does not result in additional themes. If the authors did compare themes from the first 2 or 3 groups with those from subsequent groups to assess thematic saturation they need to explain their process.

Thank you very much for pointing this out. We are truly sorry for that wording. You are absolutely right. We have changed the sentence to read as follows:

Page 3, lines 95-96: A total of 18 participants were included in four different focus groups, which were analysed at the end of each session individually until data saturation was reached.

3. More importantly, the authors provide almost no information about how services for ASD children and their families are organized and financed in Catalonia.  Such information is necessary to understand the assessments offered by participants. (For example, findings around the need for more or different services are really hard to understand without some context on services accessibility and adequacy. Similarly, findings around training needs can't be informative to others without know a bit about current training requirements and practices for health and education professionals serving these families? The observation that there needs to be more attention to healthcare/education coordination would be more relevant if we knew a bit about how participants or their organizations intercept/interact/coordinate as a function of current policies? Findings around the need for more attention to cultural diversity would make more sense if there were context on the specific cultural and racial/ethnic diversity of the ASD care receiver and care provider populations and the larger community. 

Thank you very much for your feedback. However, a descriptive qualitative study must be framed in a specific context, which in our case is the Parc Taulí Mental Health Area. It is beyond the scope of our study to describe how services are financed and organised across Catalonia. Nevertheless, we agree that we can elaborate further on the context. To do so, we have used terms that are widely known by practitioners and by the WHO in order to help readers to better understand the type of health services available in our context.

Page 2, line 81-82: we have added that the facility in question is publicly run and provides universal coverage and access to healthcare.

Page 2, line 81: we have included a link to the healthcare facility’s webpage (we have not included it in the list of references because it is only intended to provide readers with additional context).

Page 2, line 83-84: we have described the way users are recruited and how multidisciplinary work between healthcare and education professionals is carried out.

Page2-3, lines 77-88): “The study was carried out at the Consorci Corporació Sanitària Parc Taulí [Parc Taulí Hospital] in Sabadell, Barcelona. It is a tertiary healthcare facility that is part of the Catalan Health Institute care network, currently attending to a population of 493,000 citizens and is therefore under public management. The Mental Health Area (https://www.tauli.cat/salutmental/usuaris/informacio-i-consells-als-usuaris) provides universal coverage and access to healthcare for children, adolescents, and adults with various psychological disorders. Patients are recruited through outpatient consultations, emergency admissions, or referrals from other specialties. Users are in direct contact with mental health professionals and education professionals working with children and adolescents in special and non-special schools. Interaction between these professionals takes place through interdepartmental coordination in the area of reference at each mental health facility”.

4. I think the authors should consider a bit of reframing of this study as an assessment of how well a specific community is addressing sexuality among ASD persons and their families. Alternatively, the authors have a specific recommendation for which they want to advocate---a lifelong approach to sexuality with ASD children and their families----and they slip into a prescriptive writing style at various points in the paper. Perhaps the paper would be more impactful if framed as a commentary. 

Qualitative research seeks to provide a deeper understanding of the experiences of participants, who are members of a community or have a number of commonalities, in order to identify behaviours and emotions regarding a common theme. We understand that there are different scientific paradigms, from positivist to critical, with different approaches to our topic, which can be mutually enriching and complementary.

However, the assessment studies proposed by the reviewer are of a different nature and aim to evaluate programmes or interventions and use other methodologies. Naturally, our study is descriptive in nature, as indicated in the Methods section and as supported by the references cited.

Thank you again for your comments and feedback, which have greatly assisted us in critically reviewing our research.

Author Response File: Author Response.docx

Round 2

Reviewer 2 Report

I am really saddened by how you responded to my comments.....I was not offering a generic critique of qualitative research; I was offering a very targeted suggestion that without more effort to contextualize the findings from your descriptive study it was unclear that it made a contribution to the literature. I do not discount the potential contributions of ideographic research approaches. I do think it is incumbent upon qualitative researchers, and particularly for teams like yours who promote recommendations based on their research, to articulate how the thoughts and experiences they describe are correlated with observable and mutable environmental conditions.

I appreciate many of your edits and clarifications and I do not think you have provided sufficient evidence for the recommendations you make on page 11.

Author Response

Reviewer_2

I am really saddened by how you responded to my comments.....I was not offering a generic critique of qualitative research; I was offering a very targeted suggestion that without more effort to contextualize the findings from your descriptive study it was unclear that it made a contribution to the literature. I do not discount the potential contributions of ideographic research approaches. I do think it is incumbent upon qualitative researchers, and particularly for teams like yours who promote recommendations based on their research, to articulate how the thoughts and experiences they describe are correlated with observable and mutable environmental conditions.

Needless to say, it was never our intention to offend you. We are very sorry for that, we thought that your initial comments referred to our method and wanted to show you its benefits in the context of our study. It goes without saying that questioning studies is extremely useful for improving research. Thank you once again for your understanding and reviewing efforts.

I appreciate many of your edits and clarifications and I do not think you have provided sufficient evidence for the recommendations you make on page 11.

Thank you very much for your comment. We have thoroughtly re-read, revised, and supported with further evidence the recommendations made on page 11 in the Discussion section.

In this section we discuss our findings and the existing literature on topics such as: 1) the need to work alongside families; 2) the lack of specific training for professionals; 3) the need for multidisciplinary work or professional coordination between different fields (health and education); 4) the particularities of adolescents with ASD; 5) the gender perspective; 6) sex education.

Therefore, we have explored and included references on aspects such as 1) family support and collaborative strategies, 2) curricular adaptation and communication, and 3) cultural diversity. We agree with you that we had failed to addressed these aspects. Page11, lines 350-355; 361-368 and 378-380.

Thank you once again for your understanding and valuable insights.

Author Response File: Author Response.docx