The Case Against Restraint and Seclusion: Perspectives from Lived Experience and the Neurodivergent Community

The Case Against Restraint and Seclusion

Restraint and seclusion are controversial practices in the field of behaviour support. Historically, these tactics have been employed as last-resort measures to manage challenging behaviours in individuals with disabilities, mental health issues, or neurodivergent conditions. There is growing opposition to restraint and seclusion. Based on the point that these approaches can be traumatic, counterproductive, and even dangerous. The Restraint Reduction Network is growing in influence. By amplifying the voices of those with lived experience and the neurodivergent community, this article will explore the key arguments against the use of restraint and seclusion. The quotes used in this article come from DMs received following the publishing of this post in May 2023.

The Trauma of Restraint and Seclusion

Many individuals with lived experience describe the use of restraint and seclusion as deeply traumatic. Being physically restrained or isolated against one’s will can evoke feelings of powerlessness, fear, and humiliation. In some cases, these experiences can lead to lasting psychological harm, such as post-traumatic stress disorder (PTSD).

For example, Emily, an autistic woman, recounts her experience of being restrained as a teenager: “I remember the terror I felt when I was held down by multiple staff members, unable to move or escape. That feeling of helplessness still haunts me to this day.”

The neurodivergent community has also highlighted the potential for retraumatisation when individuals with a history of abuse or neglect are subjected to restraint and seclusion. These practices can reinforce past traumatic experiences, further exacerbating an individual’s mental health struggles.

The Dehumanising Effects of Restraint

Restraint and seclusion can strip away an individual’s dignity, autonomy, and sense of self. Opponents argue that these practices effectively treat people as if they are problems to be managed, rather than human beings deserving of respect and understanding.

As an autistic advocate, Alex P, explains: “When I was restrained, I felt like I was being treated as less than human. It was as if my emotions, my needs, and my very existence were considered less important than maintaining control over the situation.”

This loss of dignity can have a profound impact on an individual’s self-esteem and mental wellbeing. It can also foster a sense of shame and stigma, further isolating individuals from their peers and support networks (Hodgson 2013).

The Impact on Trust and Relationships

The use of restraint and seclusion can significantly undermine trust between individuals and their support workers, this may be in care homes or schools/units. When people feel threatened or unsafe, they are less likely to engage openly and honestly with those responsible for their care.

Sarah K, a young adult with bipolar disorder, shares her experience: “After I was secluded in a locked room during a crisis, I felt like I couldn’t trust the staff members who were supposed to be helping me. It made it so much harder for me to reach out and ask for help when I really needed it.”

This breakdown of trust can negatively impact the effectiveness of therapeutic relationships and hinder overall progress. In addition, it can create an environment of fear and anxiety, which may exacerbate challenging behaviours and perpetuate the need for further interventions – a cycle of negativity.

The Ineffectiveness and Potential for Harm

Critics of restraint and seclusion argue that these practices are often ineffective in addressing the root causes of challenging behaviour. Instead, they may merely suppress coping mechanisms or create a temporary illusion of control. In many cases, restraint and seclusion can even escalate situations, leading to further harm or injury.

Research has shown that the use of restraint and seclusion can be associated with a range of negative outcomes, such as increased agitation, self-injurious behavior, and physical injury. Moreover, these practices can pose serious risks to the safety and well-being of both individuals and staff members (Lebel et al 2012).

Jamie, a person with a history of self-harm, recalls their experience of seclusion: “I was put in a bare room with nothing but a mattress on the floor. It didn’t stop me from hurting myself – in fact, I felt even more desperate and alone.”

Risks and Concerns Raised About The Use Of Seclusion

The use of seclusion in schools and care settings can have several potential risks and concerns, including but not limited to at all, some of these are short term but many will have lifelong ramifications for the individual:

1. Increased aggression: Isolating a student or individual can exacerbate feelings of frustration, anger, or anxiety, leading to increased aggression later on.
2. Social isolation: Prolonged isolation can lead to social isolation and loneliness, which can have negative impacts on mental health and social skills.
3. Emotional distress: Seclusion can be emotionally distressing for students or individuals, particularly if they are isolated for extended periods of time or without adequate support.
4. Lack of access to education: Isolating a student can deny them access to educational opportunities, which can exacerbate learning difficulties and increase the risk of academic underachievement.
5. Stigma: Seclusion can stigmatize students or individuals, leading to social ostracism and bullying.
6. Lack of parental involvement: Seclusion can lead to a lack of parental involvement, which can further exacerbate social and emotional difficulties.
7. Lack of progress monitoring: Seclusion can make it difficult to monitor a student’s progress, making it challenging to identify when interventions are no longer effective.
8. Lack of training: Seclusion can be used as a substitute for proper training and support for staff, rather than providing adequate training and support for staff to manage challenging behaviors.
9. Lack of alternative interventions: Seclusion may be used as a first line of intervention rather than exploring alternative interventions such as positive behavioral supports, social skills training, or mental health services.
10. Legal concerns: Seclusion may violate the rights of students or individuals, particularly those with disabilities, and may be subject to legal challenges.
11. Ethical concerns: Seclusion may raise ethical concerns, such as the use of isolation as a form of punishment or the denial of education to students who are isolated.
12. Negative impact on mental health: Seclusion can have a negative impact on the mental health of students or individuals, particularly those who are already experiencing mental health difficulties.
13. Difficulty in returning to the classroom: Students who are isolated may find it difficult to return to the classroom, particularly if they have been isolated for an extended period of time.
14. Lack of parent-school collaboration: Seclusion can lead to a lack of collaboration between parents and schools, which can further exacerbate social and emotional difficulties.
15. Increased risk of bullying: Seclusion can increase the risk of bullying, particularly if the student or individual is isolated for extended periods of time.
16. Negative impact on self-esteem: Seclusion can have a negative impact on the self-esteem of students or individuals, particularly if they are isolated for extended periods of time.
17. Lack of access to resources: Seclusion can limit access to resources such as occupational therapy, speech therapy, or counseling services.
18. Lack of attention to the underlying cause: Seclusion may not address the underlying cause of the behavior, leading to a lack of progress in addressing the behavior.
19. Lack of consideration of the individual’s needs: Seclusion may not take into account the individual’s unique needs, leading to a lack of tailored interventions.
20. Lack of accountability: Seclusion may not be regularly monitored or evaluated, leading to a lack of accountability for its use.

It is important to carefully consider the potential risks and concerns associated with the use of seclusion in schools and care settings, and to explore alternative interventions that may be more effective and less harmful.

Alternatives to Restraint and Seclusion

In light of these concerns, many within the neurodivergent community and beyond are advocating for the development and implementation of alternative approaches to behaviour support. These alternative approaches prioritise empathy, understanding, and communication, and seek to address the underlying reasons or drivers for challenging behaviour rather than resorting to coercive tactics.

Some examples of these approaches include:

• Trauma-informed care: Recognizing the potential impact of past trauma and incorporating this understanding into support strategies.
• Positive Behavior Support (PBS): A proactive, person-centered approach that focuses on teaching new skills and creating supportive environments to reduce challenging behaviours – See the next section for some caveats here.
• De-escalation techniques: Strategies to help individuals manage their emotions and regain a sense of control during times of crisis, without resorting to restraint or seclusion.

What concerns have been raised about PBS?

Many autistic academics and advocates have criticised approaches like “positive behavior support” (PBS). This is mainly due to links with ABA in the United States. Some of the main criticisms include:

• PBS focuses too much on modifying the behaviour of autistic people to fit neurotypical standards, rather than accepting and accommodating autistic people for who they are. It aims to make autistic behavior more “normal” rather than supporting autistic people on their own terms.
• PBS relies too heavily on rewards, praise, and external motivators to shape behavior. This can undermine an autistic person’s internal motivation and autonomy.
• The goals and interventions in PBS are often determined by non-autistic professionals, not the autistic people themselves. This is a paternalistic approach that does not adequately respect autistic agency and self-determination.
• PBS does not do enough to change the environments, expectations, and attitudes of non-autistic people. The burden is too often placed on autistic people to adapt, rather than on others to be more inclusive, accepting, and accommodating.
• The concepts of “challenging behavior” and “functional analysis” that underlie PBS are problematic. They can portray normal autistic behaviours as problems to be fixed rather than natural human differences.
• PBS research often relies on flawed methods that do not actually measure quality of life, happiness, or well-being from the perspective of autistic people themselves.
• PBS is too closely tied to compliance-based training and a “treatment” mindset towards autism. This medical model needs to shift to a social model of disability that respects neurodiversity.

PBS aims to be a humane approach, many autistic advocates argue that it needs to do more to respect autistic agency, accommodate differences, and change unreasonable social expectations. A truly ethical approach, from this perspective, would be more autistic-led and neurodiversity-affirming (McCauley et al 2020)

What Neurodiversity Affirming Alternatives to PBS are suggested?

Some alternatives to PBS suggested by autistic advocates include:

• Neurodiversity-affirming support: This approach accepts and accommodates autistic people as they are, rather than trying to modify behaviour to fit societal norms. It provides support based on the expressed needs and priorities of autistic individuals.
• Autistic-led planning: Support plans are developed by autistic people themselves, or in close partnership with trusted allies. Professionals act as facilitators rather than directors.
• Trauma-informed support: Recognises that many autistic people have faced trauma from forced compliance, restraint, seclusion, etc. Support focuses on safety, choice, control, and empowerment.
• Augmentative and Alternative Communication: Provides communication supports, like visual schedules, speech devices, sign language, etc. This can help address the underlying causes of distress without relying on behavior modification.
• Sensory accommodations: Provides accommodations to support sensory differences, such as adjustments to lighting, sound, seating, etc. This makes the environment more accessible and reduces discomfort, distress, and meltdowns.
• Relationship-based support: Builds close, trusting relationships of mutual understanding between autistic individuals and their supporters or caregivers. These relationships form the basis for collaborative problem-solving and support.
• Skill-building support: Teaches autistic individuals skills to help them gain more independence and autonomy, such as daily living skills, social skills, and coping strategies. But the individual directs the goals and pace of learning.
• Adjusting expectations: Works with families, schools, and providers to change unrealistic social expectations, embrace neurodiversity, and gain a deeper understanding of the autistic experience. The focus is on inclusion and acceptance, not assimilation.
• Advocating for rights and inclusion: Activism that pushes for policy changes, promotes autistic rights, and campaigns against the use of more coercive behaviorist techniques. The goal is a society that fully includes and accommodates people of all abilities and neurotypes.

Concluding Thoughts on Restraint and Seclusion in Care and School Settings

Autistic advocates promote more autonomy-centered, inclusion-focused, and neurodiversity-affirming approaches to support over compliance-based behaviour modification techniques. The alternatives all aim to empower autistic individuals by improving understanding, fostering accommodation, and promoting acceptance in society. This is essential for moving away from the use of restraint

The voices of those with lived experience and the neurodivergent community provide invaluable insights into the detrimental effects of restraint and seclusion. These practices can cause lasting trauma, dehumanise individuals, erode trust, and even lead to harm. By embracing alternative approaches that prioritise empathy, understanding, and collaboration, we can move towards more humane and effective behavioural support strategies.

The growing opposition to restraint and seclusion emphasizes the importance of listening to the voices of those who have been directly impacted by these practices. As we move forward, it is crucial that we continue to center these perspectives in our efforts to create more inclusive, respectful, and person-centered support systems for individuals with disabilities, mental health issues, and neurodivergent conditions.

By advocating for change and promoting the adoption of alternative approaches, we can work together to create a world in which all individuals are treated with the dignity, respect, and empathy they deserve.

Further Reading From The Autistic Community

Here are some useful resources to learn more about autistic-led and neurodiversity-affirming approaches to support. These cover some key resources on alternative philosophies, practical approaches to support, insights on policy and advocacy issues, and the lived experiences of autistic people from a neurodiversity perspective. Exploring these resources can help gain a deeper understanding of what good autism support can look like outside of ABA and behaviourism. Please let me know if you have any other questions!

• The Autistic Self Advocacy Network (ASAN) – A leading autistic-run advocacy organization. They promote approaches like self-determination, accommodation, inclusion and autonomy. http://www.asan.com
• Neuroclastic – An autistic-run website publishing articles and essays on topics like trauma-informed care, sensory needs, alternative communication, and relationship-based support. http://www.neuroclastic.com
• The book NeuroTribes by Steve Silberman – This acclaimed book provides a comprehensive look at the neurodiversity movement and the push for more inclusive societies. It offers many insights into alternative approaches to ABA and behaviorism.

• Untypical: How the world isn’t built for autistic people and what we should all do about it. It’s time to remake the world – the ground-breaking book on what steps we should all be taking for the autistic people in our lives by Pete Wharmby.

• The blog Autistic Hoya by Lydia X. Z. Brown – Features essays on ableism, inclusion, institutional policies and practices, as well as specific issues around autism. Provides an autistic perspective on what needs to change to make society more just and accessible.
• The academic journals Autism in Adulthood and the Journal of Autism and Developmental Disorders – Though more research-focused, these journals occasionally publish papers on promising and alternative support practices, especially in areas like post-secondary education, employment, healthcare, and daily living.
• Organisations like the Autism Women’s Network, the Autistic Self Advocacy Network, and the Autism National Committee. These groups support the autistic community through advocacy and by promoting best practices that place autistic individuals at the center of decision making regarding their own lives.

References:

Hodgson, J. H. (2013), “Restrictive interventions in forensic mental health services: A literature review”, The Psychiatrist, Vol. 37 No. 6, pp. 187-193.

LeBel, J. L., Nunno, M. A., Mohr, W. K., & O’Halloran, R. (2012). Restraint and seclusion use in US school settings: Recommendations from Allied treatment disciplines. American Journal of Orthopsychiatry, 82(1), 75-86.

McCauley, J., Brady, M. P., Lignugaris-Kraft, B., & Garriott, W. (2020). PBS: A “Two-Component Model” to Promote Respect for Autistic Agency. Behavior Analysis in Practice, 13(1), 278–287. https://doi.org/10.1007/s40617-019-00383-7