Navigating Ethical Challenges: Informed Consent in Autism Research and Education
I came across a recent article that investigates the “effectiveness” of the PACS (Problem-Antecedent-Consequences-Solution) curriculum in teaching socio-sexual skills to autistic adolescents. The authors posit that socio-sexuality education, which includes both physiological and social aspects of sexuality, is crucial for ‘individuals with disabilities.’ However, due to limited resources, insufficient teacher training, and restrictive societal attitudes, such education is often lacking. This gap in education leaves ‘individuals with disabilities’ with low levels of understanding about basic physiological and social/emotional aspects of relationships, increasing their vulnerability to negative sexual experiences and abuse.
The study recruited 15 autistic students from a social skills training program, ultimately including nine participants aged 11-16 years. These students were identified by their teachers for displaying inappropriate sexual behaviours and lacking sexual education knowledge. Participants took part in PACS curriculum sessions focusing on socio-sexual topics such as flirting, using bathroom stalls, entering public bathrooms, and passing gas. The study used a repeated measures pretest-posttest design to evaluate changes in decision-making skills. Students responded to pre-test and post-test questions using yes/no paddles to ensure individual responses remained uninfluenced by peers.
The PACS curriculum (which I couldn’t find information about in places like Google Scholar) is said to employ explicit instruction and visual supports to aid understanding and skill acquisition. This structured approach involves the instructor describing a problem, exploring alternatives, discussing potential consequences, and guiding students to make safe decisions. This method aims to provide clear, concrete examples to help students learn appropriate socio-sexual behaviours. Results showed significant improvements in four areas: flirting, using bathroom stalls, entering bathrooms, and passing gas, indicating that the PACS curriculum effectively enhances socio-sexual decision-making skills among autistic adolescents.
Explicit instruction, a key component of the curriculum, is based on behavioural principles and involves modelling, guided practice, and independent practice. The authors note that this method was particularly effective for students who struggled with traditional verbal instruction. Visual supports, such as objects, images, and task organisers, further aid comprehension and promote independence and confidence. These strategies helped the study participants to understand and generalise socio-sexual concepts across various settings.
However, the study has limitations, including a small sample size and lack of long-term data to assess skill retention. Future research should involve larger sample sizes and explore the curriculum’s effectiveness for students with varying cognitive abilities. Parental involvement in socio-sexuality education is also essential to ensure consistency between home and school environments.
The study reveals some ableist perspectives, particularly in framing autistic individuals as having “deficits” and focusing on “appropriate” behaviours based on neurotypical standards. Additionally, the curriculum’s use of behaviour modification techniques connects it to Applied Behavior Analysis (ABA), a methodology criticized for its rigid, compliance-based approach. Critics argue that ABA can be dehumanising and fails to respect individuals’ autonomy and natural ways of being.
Thus, the PACS curriculum may show promise in providing some students with socio-sexuality information, promoting self-advocacy skills, and protecting them from abuse. The structured approach, using explicit instruction and visual supports, teaches complex socio-sexual concepts. However, the study highlights the need for further research, broader implementation, and a shift away from ableist perspectives to support individuals with developmental disabilities in their socio-sexual development.
Yah… but…
As an autistic gestalt processor (aka, non-verbal autistic) with a Level 2 autism diagnosis, I often question why studies involving autism and behaviour so frequently default to ABA as the primary ‘intervention.’ My own experiences, coupled with the significant challenges I face with functional language, make me skeptical of ABA’s widespread use, especially for autistics who are Level 1 or Level 2 and without significant intellectual impairments.
ABA’s dominance in the field of ‘autism intervention’ has historical roots. It was one of the earliest formalised interventions, developed in the 1960s by Dr. Ivar Lovaas. This early adoption led to its widespread acceptance and use in educational and therapeutic settings. However, it’s crucial to recognise that ABA’s origins are intertwined with eugenics, a disturbing aspect often glossed over. Lovaas's work was initially funded by the same institutions that supported eugenics research, aiming to “normalize” autistics to fit neurotypical standards, often through aversive and punitive methods.
The “evidence” supporting ABA’s effectiveness in reducing harmful behaviours and improving communication skills has solidified its position as the go-to intervention (capitalism loves its “evidence based interventions”). However, these studies often emphasise compliance and superficial behavioural changes rather than addressing the underlying needs and dignity of the studies’ participants. This focus on behaviour modification to fit neurotypical norms is fundamentally problematic and fails to respect the autonomy and individuality of autistics.
Institutional support for ABA is strong, partly because many educational and healthcare systems prioritise interventions that are ‘reimbursable’ or covered by insurance, particularly here in the United States. This makes it the default choice for many families and practitioners. However, this financial backing and institutional endorsement do not necessarily reflect the best interests of autistics, especially when alternative approaches are marginalised.
The structured and standardised nature of ABA appeals to many practitioners because it provides clear, measurable outcomes. Yet, this emphasis on quantifiable progress can overlook the qualitative aspects of an autistic person’s life, such as their emotional well-being and sense of self. The cultural perception of autism through the medical model lens, viewing it as a collection of deficits to be corrected, aligns with ABA’s focus on behaviour modification. This perspective often overshadows the social model of disability, which emphasises acceptance and accommodation of neurodiversity.
Despite its prevalence, ABA faces significant criticism. Its focus on compliance and behaviour modification can be dehumanising, failing to respect the autonomy and natural ways of being of autistics. The neurodiversity movement advocates for acceptance and accommodation of autistic behaviours rather than trying to change them to fit neurotypical standards. This perspective challenges the dominance of ABA and calls for more holistic and respectful approaches.
There is a growing recognition of the need for more balanced approaches that respect the individuality and preferences of autistics. Person-centered approaches, developmental and relationship-based models emphasising environmental modifications and accommodations are gaining traction. These approaches support autistics in navigating the world on their terms, rather than forcing them to conform to neurotypical norms.
The dominance of ABA in autism studies and interventions is a result of historical roots, extensive empirical support, institutional backing, and a structured approach. However, as awareness of the neurodiversity movement and critiques of ABA grow, there is a shift towards more respectful and holistic approaches that honor the individuality and autonomy of autistics. This shift reflects a broader understanding of autism and the diverse needs and perspectives of those ‘on the spectrum,’ particularly for autistics like me who face significant functional language challenges and require a more nuanced and respectful approach to support.
Informed Consent?
In reading the paper, I did get a sense that informed consent was a critical component of the research process. According to the report, the researchers first identified eligible students based on specific criteria such as inappropriate sexual behaviours and deficits in sexual education knowledge. Consent forms were then sent to the parents of these students, and nine out of the 15 forms were returned with written consent. Additionally, the terms of participation were clearly explained to each student, who were given the opportunity to decline participation if they wished. This dual-layer consent process ensured that both the legal guardians and the students themselves were informed about the study's aims and procedures, thereby adhering to ethical standards for research involving minors.
From my POV as the Chair of an independent Institutional Review Board, the dual-layer consent process is crucial in human subject research, especially when involving autistic minors, due to several ethical and practical considerations. Firstly, obtaining consent from both parents and the children themselves ensures that all parties are fully aware of the study’s purpose, procedures, and potential risks. This transparency is essential to respect the autonomy and rights of the participants. For autistic minors, who may have varying levels of understanding and communication, it is particularly important to ensure they comprehend what participation entails. This approach also acknowledges the potential vulnerabilities of autistic children, providing an extra layer of protection against coercion or misunderstanding. Furthermore, involving the children in the consent process empowers them and respects their agency, fostering a sense of ownership and control over their participation. This comprehensive consent process is a fundamental ethical requirement, promoting trust, safety, and the integrity of the research.
Consider here that the study might have posed several risks to its participants. Firstly, discussing and learning about socio-sexual topics could have caused discomfort or anxiety among the participants, especially if they had limited prior exposure to such topics. This discomfort might be exacerbated by their sensory sensitivities and communication difficulties.
Secondly, there is the risk of psychological stress due to the focus on correcting behaviours deemed inappropriate according to neurotypical norms. This could potentially lead to feelings of inadequacy or self-consciousness, impacting their self-esteem and mental well-being.
Thirdly, the group setting and the use of visual supports to illustrate appropriate and inappropriate behaviours might inadvertently expose participants to peer judgment or embarrassment, particularly if they struggled with the scenarios presented or their responses were not validated.
Lastly, the intervention’s reliance on ABA principles could pose ethical concerns, as the emphasis on behaviour modification might not align with the participants’ own perspectives or preferences, potentially leading to a sense of loss of autonomy or personal identity. Ensuring informed consent and providing adequate support and debriefing were essential to mitigate these risks.
Participatory Action Research
Switching gears a bit, but staying on the topic of consent, it’s vital that parents know that teachers often engage in participatory action research (PAR) in their classrooms as part of programs (e.g., professional development, internships, or induction). This PAR approach allows educators to investigate and improve their teaching practices, identify effective strategies, and address specific challenges within their unique educational environments. However, a significant issue arises when teachers conduct this type of research without going through the formal informed consent process with their students and their parents.
In the context of PAR, teachers and students work collaboratively to identify problems, implement solutions, and reflect on the outcomes. This hands-on, reflective practice is invaluable for professional development and for tailoring educational strategies to meet the diverse needs of students. Yet, because PAR is deeply embedded in the daily activities of the classroom, teachers may overlook the necessity of obtaining formal consent. They might assume that regular classroom activities do not require additional permissions, especially when the research is seen as an extension of normal teaching practices.
However, skipping the informed consent process poses ethical and legal concerns. Informed consent ensures that students and their parents are fully aware of the research activities, their purpose, and any potential risks or benefits. It respects the autonomy of the participants, allowing them to make informed decisions about their involvement. Without this process, students and parents are left uninformed about the nature of the research, which could involve data collection, observations, or interventions that go beyond typical educational practices.
The lack of informed consent can also undermine trust between teachers, students, and parents. Parents may feel their rights and their children’s rights have been violated if they discover research activities were conducted without their knowledge or approval. This breach of trust can have long-term implications for the teacher-parent relationship and the perceived integrity of the educational institution.
Moreover, conducting research without informed consent may expose schools and teachers to legal liabilities. Educational institutions typically have policies and guidelines regarding research ethics, which mandate the informed consent process to protect students’ rights and welfare. Ignoring these protocols can result in disciplinary actions against teachers and can jeopardise the validity and credibility of the research findings.
Thus, whilst participatory action research is a valuable tool for educational development, it is essential that teachers adhere to ethical standards by obtaining informed consent from students and their parents. This practice not only upholds ethical and legal standards but also fosters a trusting and transparent educational environment.
Curriculum Adoption Issues
This also got me thinking about how school districts seem to change curriculum providers every 3-5 years. When a school adopts a new curriculum, curriculum providers or their proxies often enter classrooms to monitor its implementation and collect student data for efficacy studies. This process raises significant ethical concerns, particularly regarding informed consent and data privacy. Frequently, these new curricula have not been rigorously tested for effectiveness within specific student populations. Consequently, if the curriculum is not a suitable fit, it can result in learning loss, adversely affecting students’ academic progress.
In many cases, parents remain entirely unaware that their children’s data is being exported to external companies for research purposes. This lack of transparency violates the ethical standards of informed consent, as parents and students should be fully informed about and agree to any data collection and research activities. Furthermore, the potential for learning loss underscores the need for rigorous pre-implementation testing and continuous monitoring to ensure the curriculum meets the needs of the students it serves.
Without parental awareness and consent, schools risk undermining trust with families, compromising student privacy, and exposing students to ineffective educational practices. Ensuring that parents are informed and consent is obtained is crucial for maintaining ethical standards and safeguarding students’ educational experiences and outcomes.
Finally …
I know that I went an entirely different direction with this article than I had originally intended. I was a bit triggered by the paper’s strong emphasis on ABA methodology at first. But then, the more I sat with it, the more I began to consider the informed consent angle and how often students are involved in research without theirs or their parents explicit consent.
Creating an informed consent statement for an autistic population that includes a diverse range of intellectual abilities and language processing styles, as well as significant co-morbidities, is crucial to ensure ethical standards are met. The complexity of autism means that some individuals might have difficulty understanding abstract concepts, processing verbal information, or dealing with anxiety related to new situations. Therefore, the consent statement must be clear, simple, and accessible, using straightforward language and avoiding jargon. Visual aids, such as icons or pictures, can significantly enhance comprehension by providing concrete representations of abstract ideas. Additionally, it is important to provide information in multiple formats, such as written text, visual aids, and verbal explanations, to cater to different learning styles and preferences.
Finally, the consent process should allow ample time for students to consider the information and ask questions. Involving caregivers or support staff in the explanation can help ensure that students fully understand what they are being asked to do. This approach respects the autonomy and individual needs of autistic students, allowing them to make an informed decision about their participation. Given the potential for underlying learning disabilities and co-morbidities to impact comprehension, it is essential that the consent process be thorough, patient, and sensitive to the unique needs of each student. This careful consideration helps to safeguard the students’ rights, well-being, and ensures the ethical integrity of the research.