autonomy
introduction
In the previous section, we discussed how some interventions limit neurodivergent people’s ability to make choices. Children can’t make every decision, as they may not fully understand the long-term consequences. However, this doesn’t mean we should ignore their preferences or needs. Adults should support a child’s autonomy and privacy in an age appropriate way.
why striking a balance matters
Finding the right balance is essential. Children should have opportunities to make decisions when possible, while still receiving guidance and support when needed. Unfortunately, many interventions, such as ABA and PECS, focus too much on compliance. These approaches often overlook personal preferences and rely on physical prompts to enforce compliance.
Understanding and supporting autonomy
In this section, we’ll explore the concept of autonomy, why it’s important, and how to support it in a way that values and respects the individual.
what is autonomy?
Autonomy is the ability to make your own choices and control your life (Dryden, 2022). It means having the right to self-determination and independence, without being pressured or controlled by others (Sedig, 2018). Simply put, autonomy is about making decisions based on what matters to you and what feels right for you.
autonomy in healthcare
In healthcare, autonomy means a patient’s right to make informed decisions about their treatment (Manda-Taylor, Masiye, and Mfutso-Bengo, 2015). This includes the right to agree to or refuse treatment, participate in care decisions, and have their preferences respected. It highlights the importance of personal choice, bodily autonomy, and the individual’s control over their healthcare decisions.
compliance and autonomy
compliance vs autonomy in interventions
PECS, ABA, and social skills training often push neurodivergent people to conform to neurotypical standards, which can impact their autonomy. These compliance-based methods prioritise certain behaviours over the person’s preferences and natural ways of interacting. They often overlook unique communication styles and needs. By focusing on compliance instead of collaboration, these approaches limit autonomy, preventing individuals from making their own choices and expressing themselves authentically.
pecs
PECS claims to help some people build communication, but it often limits true choice. Because it is usually adult-led, the child must follow a set process instead of having the freedom to express themselves in their own way. This approach doesn’t always align with how a child naturally prefers to communicate (Zachos, 2023).
ABA (Applied Behaviour Analysis)
ABA focuses on teaching specific behaviours and reducing others, often placing heavy emphasis on compliance. This approach can pressure children to hide important self-regulation behaviours, like stimming, or ignore their own needs to meet neurotypical expectations.
Social Skills Training
Social skills programs often teach neurotypical ways of interacting. This can pressure neurodivergent people to hide their true selves. This pressure can lead them to focus on meeting others’ expectations instead of being authentic (Price, 2015).
These programs can limit autonomy by valuing conformity over ways neurodivergent people prefer to express themselves.
compliance approaches on language development
PECS and ABA teach language through a step-by-step, analytical process. This approach may not work well for many autistic children who are gestalt language processors (Zachos, 2023). Gestalt language processors learn language in chunks or phrase. This starts with entire units of language and then breaking them down into smaller parts over time.
The Limitations of PECS and ABA for Gestalt Language Processors
PECS teaches communication through specific, step-by-step actions, such as pairing pictures with words or actions. For gestalt language processors, who naturally use longer phrases or scripts, this rigid approach can feel limiting. As a result, it can reduce opportunities for more spontaneous communication.
Similarly, ABA breaks language into small, measurable tasks, such as naming objects or making requests. This method doesn’t align with how gestalt language processors learn in chunks. As a result, it may slow their natural language development a
Why These Approaches May Not Be Suitable
For gestalt language processors, the step-by-step structure of PECS and ABA can conflict with their natural way of learning language, often leading to frustration or limited progress (Price, 2015b). Approaches that support their holistic processing style are more effective in promoting meaningful, natural communication.
The Importance of Autonomy in Development
Prioritising autonomy is key to children’s growth. When children have the freedom to express themselves and make choices, they often feel more engaged, confident, and motivated (Reeve, 2016). Research shows that supporting autonomy improves learning outcomes and helps children take responsibility for their own progress and development (Reeve, 2016).
children's autonomy
Encouraging autonomy is a crucial part of helping children grow, whether you’re a parent or a professional. Autonomy means giving children the chance to make choices and take control of their lives. This process can start early and requires ongoing adjustments as a child grows and their abilities develop.
Supporting Autonomy: A Lifelong Process
As children get older, their ability to make decisions improves. For younger children, autonomy might mean choosing a game to play or picking an outfit. As they grow, their needs and preferences become more complex, and they can make bigger decisions. It’s important to adjust the level of autonomy to fit their development. This approach helps build confidence, problem-solving skills, and respect for their individual pace of growth (Froiland, 2013).
Examples of Autonomy at Different Ages
Below are examples of what autonomy might look like for a 5-year-old compared to a 15-year-old:
Common Questions About Autonomy
How Can I Support Autonomy in Neurodivergent Children Who Communicate or Process Differently?
How Can I Support Autonomy in Neurodivergent Children Who Communicate or Process Differently?
To support autonomy in neurodivergent children who communicate or process differently, professionals and families can use various strategies:
📱Visual aids – Picture schedules or charts help children understand their choices.
💻 AAC tools – Augmentative and Alternative Communication (AAC) provide a structured way for children to express their views (Samuelsson et al., 2023).
🗓 Clear, manageable options – Offering structured choices empowers children without overwhelming them.
These strategies give children the space to communicate their needs and take ownership of decisions.
What If My Child Refuses to Make Decisions or Participate in Choices?
What If My Child Refuses to Make Decisions or Participate in Choices?
If a child refuses to make decisions, respect their preference rather than forcing participation. Refusal often comes from feeling overwhelmed, pressured, or exhausted from compliance-based expectations.
💌 Validate their emotions – Instead of dismissing their feelings, acknowledge them.
💗 Give space – Let them decide when they’re ready to engage again.
🤗 Recognise past experiences – Consider if previous compliance-based therapies made decision-making feel unsafe or unimportant.
When autonomy is respected, children feel more safe, understood, and empowered to engage in their own way.
What If My Child Struggles with Anxiety or Fear When Making Decisions?
What If My Child Struggles with Anxiety or Fear When Making Decisions?
🤗 Reassure them – “It’s okay to feel unsure. Take your time.”
💕 Offer support, not pressure – Avoid rushing or stepping in to make decisions for them.
〽️ Break choices into steps – Instead of presenting one big decision, offer small, manageable choices.
By reducing pressure and validating their feelings, children can build confidence in their decision-making skills.
Benefits of Encouraging Autonomy
📣 Builds confidence and decision-making skills.
🧩 Encourages problem-solving and critical thinking.
🤩 Respects individual pace and abilities.
✌🏻 Reduces stress and anxiety caused by compliance-based expectations.
Finally…
Strengthens self-identity and intrinsic motivation.
Respecting Autonomy in the Age of Sharenting
What is Sharenting?
Sharenting is when parents share information, photos, or videos about their children online, often on social media. While some parents use it to document milestones, it raises serious concerns about privacy and autonomy, especially when personal details are shared.
The Concerns Around "Autism Mums" and Online Privacy
Many parents share their autistic child’s diagnosis, face, and personal information on large social media platforms. Some profiles have millions of followers, which raises ethical concerns about privacy and consent.
Why Sharing Personal Information Online is Problematic
Here are seven key issues with sharing children’s personal information online and why it goes against the principles of respecting autonomy:
1️⃣ informed consent
👁🗨 Children cannot fully understand the long-term effects of sharing personal details.
🗄 Once posted online, content stays indefinitely, potentially impacting future privacy.
📙 Parents should protect their child’s autonomy by not making this decision for them (Potter and Barnes, 2021).
2️⃣ privacy violations
⚖️ Neurodivergent children may feel especially vulnerable to judgment and stigma.
🖥 Once personal details are shared publicly, control is lost over who sees and uses them.
🗂 Sharing private health or behavioural information violates a child’s right to privacy (Human Rights Act, 1998).
3️⃣ who really benefits?
💰 Many parents monetise content featuring their children.
🥳 The child’s privacy is compromised, while the parent gains financial or social benefits.
🫥 The long-term impact on the child’s autonomy and well-being is rarely considered.
4️⃣ Cyberbullying and Exploitation
😔 Publicly sharing struggles or behaviours can lead to online harassment.
🧌 The internet is largely unregulated, increasing the risk of exposure to trolls or predators.
🔏 Protecting children from cyberbullying and unwanted attention should be the priority.
5️⃣ Emotional and Psychological Impact
😨 Children who later discover personal details shared online may feel exposed or betrayed.
😶🌫️ Neurodivergent individuals, especially those with alexithymia, may struggle to process their emotions around this violation (Kinnaird, Stewart, & Tchanturia, 2019).
🔐 Respecting privacy safeguards mental health and emotional well-being.
6️⃣ Impact on Child-Parent Trust
💔 Public exposure of private moments can break trust between parent and child.
❌ Children of early “mummy bloggers” have spoken out about their distress over having their lives shared without consent (Latifi, 2024).
🔒 Respecting a child’s right to privacy is essential for maintaining a healthy parent-child relationship.
7️⃣ Whose story is it?
📒 Adults should not assume ownership of their child’s personal story.
👎🏾 Children may grow up and disagree with how their information was shared.
☀️True advocacy means protecting the child’s dignity and privacy rather than using their life for content.
closing thoughts
Respecting a child’s autonomy, privacy, and ability to make choices is essential to their well-being. While raising awareness is important, it should never come at the cost of an individual’s right to control their own narrative.
To learn more about how certain interventions can undermine autonomy, visit my Ableist Approaches page. If you have any questions about autonomy, neurodivergent-affirming approaches, or my work, check out my FAQ section.
references by category
Books and Articles on Autonomy and Rights
- Dryden, J. (2022). Autonomy. [online] Internet Encyclopedia of Philosophy.
- Manda-Taylor, L., Masiye, F. and Mfutso-Bengo, J. (2015). Autonomy. Encyclopedia of Global Bioethics, pp.1–8.
- Human Rights Act (1998). Human Rights Act 1998. [online] Legislation.gov.uk.
- Sedig, L. (2018). What’s the role of autonomy in patient- and family-centered care when patients and family members don’t agree? AMA Journal of Ethics, 18(1), pp.12–17.
Research and Studies on Neurodivergence and Behaviour
- Bondü, R. and Esser, G. (2014). Justice and rejection sensitivity in children and adolescents with ADHD symptoms. European Child & Adolescent Psychiatry, [online] 24(2), pp.185–198.
- Kinnaird, E., Stewart, C. and Tchanturia, K. (2019). Investigating Alexithymia in autism: a Systematic Review and meta-analysis. European Psychiatry, 55(1), pp.80–89.
- Charania, S.N., Danielson, M.L., Claussen, A.H., Lebrun-Harris, L.A., Kaminski, J.W. and Bitsko, R.H. (2022). Bullying Victimization and Perpetration Among US Children with and Without Tourette Syndrome. Journal of Developmental & Behavioral Pediatrics, [online] 43(1), pp.23–31.
- Miller, D., Rees, J. and Pearson, A. (2021). ‘Masking is life’: Experiences of masking in autistic and nonautistic adults. Autism in Adulthood, [online] 3(4).
Publications on Sharenting and Online Privacy
- Potter, A. and Barnes, R. (2021). The ‘Sharent’ Trap: Parenting in the Digital Age and a Child’s Right to Privacy. Children’s well-being, pp.283–297.
- Walrave, M., Verswijvel, K., Ouvrein, G., Staes, L., Hallam, L. and Hardies, K. (2022). The Limits of Sharenting: Exploring Parents’ and Adolescents’ Sharenting Boundaries Through the Lens of Communication Privacy Management Theory. Frontiers in Education, 7.
- Latifi, F. (2023). Influencer Parents and The Kids Who Had Their Childhood Made Into Content. [online] Teen Vogue.
- Latifi, F. (2024). These Kids Made Their Influencer Parents Wealthy. Will They See a Dime of That Money? [online] Cosmopolitan.
- Milmo, D. (2022). UK must protect child influencers from exploitation, MPs say. [online] The Guardian.
Research on ABA and Compliance-Based Approaches
- Price, E. (2015). Social Skills Training | AutisticSLT. [online] AutisticSLT.
- Sandoval-Norton, A.H. and Shkedy, G. (2019). How much compliance is too much compliance: Is long-term ABA therapy abuse? Cogent Psychology, [online] 6(1).
- Zachos, A. (2023a). Compliance Based Therapy and Gestalt Language Development. [online] Meaningfulspeech.com.
- Zachos, A. (2023). Why we say ‘no’ to PECS® as an AAC system. [online] Meaningfulspeech.com.