Autism spectrum disorder and intellectual disability in children are developmental dis​orders that have been on the rise. This is partly due to better recognition of the conditions.

Special needs children in Singapore 

Locally, about 1.4% of all children under the age of 4 were diagnosed with varying degrees of developmental issues and needs. In 2014 alone, 4400 children were diagnosed with developmental issues, which represents a 76% increase since 2010. At the same time, one in 150 children locally are diagnosed to have autism.

Most parents do not plan on becoming “special parents” or caregivers of children with special needs. Some go through a grieving process as they struggle with self-stigma, on top of the stigma imposed by society. Many grapple with feelings of shame and guilt, thinking that they are to be blamed.

This was shared by Dr Tay Kai Hong, Associate Consultant, Department of Psychiatry at Sengkang General Hospital (SKH), a member of the SingHealth group.

Indeed, caregiving for the developmentally impaired is challenging and many caregivers are “hidden patients” who toll behind the scenes unconditionally at the expense of their own health. Some go through a recurrent grief process each time they see their developmentally normal neighbours, nephews and nieces achieve life milestones. This can result in feelings of denial, resentment, anger, and depression.

On top of the psychological stress, the practical demands of caregiving for a child with special needs can be overwhelming. And since caregiving is a long-term endeavor, such chronic stress can be particularly damaging. If left unchecked, it can take a toll on the social relationships, physical health and emotional well-being of caregivers – eventually leading to caregiver burnout and depression.

Reasons for caregiver burnout from caring for a developmentally impaired child

  1. Having to manage behavioral challenges such as temper tantrums, aggression or self-harm behaviors

  2. Added financial burdens

  3. Feelings of shame and guilt leading to self-imposed social withdrawal and isolation

  4. Pre-existing tensions within the family, such as marital discord or disagreement on how to best manage the child

  5. Barriers in access to services. This include childcare, healthcare, education and enrichment and recreational services

  6. The increasing lifespan of people with developmental disabilities may mean that caregiving roles persist well into adulthood if the person does not attain the requisite skills for independent living

  7. Stigma and dealing with prejudice from relatives and the public – while physical disabilities are easy to detect and tend to elicit sympathy and compassion from the public, mental disabilities are "hidden" and manifest as “odd” behaviours. This may be misconstrued by the public as "naughty" behaviour due to "ineffective parenting”

Caregiver stress: Symptoms to watch out for

  • Feelings of resentment
  • Constant fatigue, physical and emotional exhaustion
  • Changes in sleep and appetite
  • Changes in mood – feeling low or irritable
  • Reduced interest and motivation in daily tasks, obligations or leisure activities
  • Neglecting yourself physically, nutritionally and emotionally
  • Withdrawing from social contact
  • Feeling helpless and hopeless
  • Feeling that there is nothing to live for

Caregiver stress comes and goes and fluctuates with circumstances. However, when symptoms of caregiver stress become severe and protracted for more than a few weeks, the caregiver may have progressed to clinical depression.

Clinically depressed individuals lose the ability to experience joy. Instead, they may have constant feelings of dread, drudgery, hopelessness, and helplessness. Usual life activities such as eating, sleeping, working, leisure and caregiving become affected. In more severe cases, suicidal thoughts may emerge.

Read on for tips to overcome caregiver stress and where caregivers can seek help.

Ref: M19