Parents Matter Too

Psychological support for parents navigating neurodiversity

Parents Matter Too — a weekly therapeutic reflection supporting parents of neurodiverse children.

Week 3: Living in Constant Advocacy Mode — The Psychological Cost of Always Being the Strong One

When Parenting Becomes Negotiation

For many parents, there is a quiet turning point after diagnosis.

Parenting begins to feel less like guiding and nurturing, and more like negotiating and preparing. Emails are carefully worded. Meetings are mentally rehearsed. Reports are read and reread. Language is chosen deliberately to avoid being misunderstood. Parents find themselves learning policies, procedures and terminology they never anticipated needing.

Over time, this can become a way of life rather than a temporary phase.

Even on calm days, there can be an undercurrent of readiness — a scanning for the next issue at school, the next misunderstanding in a social setting, the next barrier to support. Parenting becomes layered with vigilance.

Chronic Vigilance and the Nervous System

Psychologically, this sustained readiness closely resembles chronic vigilance.

Research consistently demonstrates that parents of neurodivergent children experience significantly higher levels of sustained parenting stress than parents of typically developing children (Hayes and Watson, 2013). Importantly, this stress is often not episodic. It persists across transitions, school changes, service delays, and repeated advocacy efforts.

Pardo-Salamanca et al. (2024) highlight how repeated systemic challenges can intensify stress responses over time. When parents are repeatedly required to justify their child’s needs within educational or healthcare systems, the nervous system may remain in a subtle but ongoing state of activation — prepared to defend, explain, and protect.

The difficulty is that the human nervous system was not designed to remain in this state indefinitely.

When activation becomes prolonged, emotional reserves diminish. Parents may notice irritability that feels unfamiliar, sleep that becomes lighter, or a growing sense of fatigue that rest does not easily resolve. These are not signs of weakness. They are predictable responses to cumulative physiological load.

The Emotional Cost of Being “The Strong One”

Parents frequently describe feeling that they must remain composed — particularly in formal settings. They are expected to absorb complex information calmly, articulate their child’s needs clearly, and maintain professionalism even when feeling frustrated or dismissed.

In many cases, emotion is postponed.

However, sustained parenting stress has been associated with increased anxiety, depressive symptoms, and reduced wellbeing when adequate emotional support is not available (Faden, Merdad and Faden, 2023). Over time, this strain can influence family functioning and relational dynamics, not because parents lack love, but because exhaustion alters emotional capacity (Rodriguez et al., 2019).

There is often an internal rule: I have to hold this together.

But strength without space for vulnerability becomes depletion.

When Advocacy Becomes Identity

Another subtle shift can occur when advocacy becomes central to parental identity. Some parents begin to feel that they are known primarily as “the one who pushes,” “the one who questions,” or “the one who challenges decisions.” While advocacy is an act of profound care, it can create internal conflict — particularly for parents who value harmony and dislike confrontation.

Living in this role long-term can narrow emotional space. There may be less room for spontaneity, rest, or even enjoyment. Even positive moments may feel temporary, overshadowed by anticipation of the next challenge.

This is not a failure of resilience. It is a predictable outcome of sustained systemic pressure.

A Therapeutic Perspective

From a counselling and psychotherapy perspective, living in constant advocacy mode requires containment.

Parents benefit from spaces where they are not required to justify, explain, or defend. Spaces where they can step out of the advocacy role and reconnect with their broader emotional self. When the nervous system is supported to regulate, decision-making becomes clearer and responses become less reactive.

Supporting parental wellbeing is not separate from supporting the child. It strengthens it.

Therapeutic work can help parents identify early signs of burnout, reduce chronic hyperactivation, and develop more sustainable ways of engaging with systems. When parents feel steadier internally, advocacy becomes more strategic and less emotionally costly.

A Gentle Reflection

If you feel tired from always preparing for the next meeting, that makes sense.

If you notice a constant undercurrent of tension, that makes sense.

If you sometimes wish someone would advocate for you, that makes sense too.

Advocacy is an act of love.

But love should not require permanent vigilance.

Parents matter too.

References

Faden, S.Y., Merdad, N. and Faden, Y.A. (2023) ‘Parental stress and perceived social support in parents of children with neurodevelopmental disorders’, BMC Psychology, 11(1), pp. 1–12.

Hayes, S.A. and Watson, S.L. (2013) ‘The impact of parenting stress: A meta-analysis comparing parents of children with and without autism spectrum disorder’, Journal of Autism and Developmental Disorders, 43(3), pp. 629–642.

Pardo-Salamanca, A. et al. (2024) ‘Parenting stress in parents of autistic and ADHD children’, Frontiers in Psychiatry, 15, Article 12167323.

Rodriguez, C.M. et al. (2019) ‘Parenting stress and parent–child functioning’, Journal of Child and Family Studies, 28(5), pp. 1307–1318.