Autism is a lifelong neurological condition that usually manifests by the age of three. It is defined by challenges in both verbal and non-verbal communication, as well as social interaction. The classic form of autism involves a triad of impairments – in social interaction, in communication and use of language, and in limited imagination as reflected in restricted, repetitive and stereotyped patterns of behaviour and activities.

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A caregiver is traditionally defined as a member of a family or paid helper who regularly looks after a child or a sick, elderly or disabled person. I would expand this definition to include anyone who is involved in the care of a person in need. This includes parents, siblings, relatives, teachers, day care staff and any other people or professionals in that person’s life. This is especially true in Africa prior to urbanization where the whole clan raise a child.

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Parenting an Autistic Child in Africa

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Parenting a child on the autism spectrum is filled with both moments of joy and undeniable challenges. From constant worry to advocating for services in our resource-constrained setting, sacrificing careers, and facing financial strain, the toll can be overwhelming. It’s a journey marked by both resilience and grief as parents navigate the complexities and injustices they encounter.

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The prevalence  of ASD is on the rise and studies carried out in western countries have helped to increase awareness and support for those affected by the disorder including their caregivers; however, in Nigeria the awareness of ASD, the acceptance as well as support for those affected is still as shown in a study by Igwe et al 2011.

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In another study  “Parenting stress in families of children with autism spectrum disorder: The roles of the extended family” by Joy I Anyawu et al in 2019 revealed that parents of children with autism experience stress that is hinged basically on the behaviour of the children. Family size does not influence parents’ stress experience but location does. Some parents receive child care and/or financial help sometimes from extended family members.

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Stressors Faced by Parents of Autistic Children

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Parents of children with disabilities often cope with grief, worries about the future, and the struggle to find and obtain appropriate services. Parents of children with ASD face some additional stressors.

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First, they often live with uncertainty about what caused their child’s autism, as well as possible guilt (no matter how underserved) over whether they did or failed to do something that led to their child’s ASD.

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Secondly, the primary disability linked to ASD revolves around social interactions. Many parents envision nurturing a warm, affectionate bond with their child, with Autism this is usually not possible. It's devastating to find out that one has a baby who doesn't like to be held or a child who will not look into one's eyes. Parents eventually adapt, learning to love the way their child loves, but not without passing through confusion, some chaos, and pain.

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Furthermore, children on the spectrum often exhibit challenging behaviors, ranging from sleep refusal, to intense and frequent tantrums, as well as extreme rigidity. These behaviors can create significant challenges and a different form of guilt: the feeling of not being affectionate enough towards a challenging child. Moreover, such behaviors place strain on the entire family, affecting sibling dynamics and marital relationships.

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Also Read: Health Challenges Prevalent Among Nigerian Women: The Importance of Health Screening

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It’s very common to hear a distressed parent say “focus solely on my child’s needs, my feelings don’t matter”. While this perspective is understandable, it ignores that the family is a system, and each family member influences the other. It's very vital to reduce stress for the parents of children with ASD and enhance their mental well-being and coping mechanisms. Supporting parents ultimately benefits the children as well.

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A number of studies have specifically linked the troublesome behaviors of children on the spectrum to high levels of parental stress. Such stress is not only damaging in its own right but also has been linked to higher rates of depression.

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When a child is diagnosed with ASD, it’s only natural to be worried and grief-stricken as the parents struggle to learn everything they can about ASD in order to help their child. Some are forced to make major decisions amid uncertain information while navigating intricate educational and healthcare systems.

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Amid periods of stress, some endure bouts of sadness, and for some, this may escalate into clinical depression. Everyone feels down now and then, and parents of children with ASDs may feel down more often than most due to the amount of stress they have to cope with.

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Clinical depression is more than feeling down. It is a diagnosable medical condition defined by the International Statistical Classification of Diseases, version 11, as having at least five of the following symptoms continuously for a period of two weeks.

1. Depressed mood most of the day, nearly everyday as indicated by either subjective report or observation by others.

2. Markedly diminished interest or pleasure in all or almost all activities including decrease in libido.

3. Changes in eating pattern( either eating too much or too little).

4. Insomnia or hypersomnia nearly every day.

5. Psychomotor agitation or retardation nearly everyday (observable by others, not merely subjective feelings of restlessness or being slowed down).

6. Fatigue or loss of energy nearly every day.

7. Feelings of worthlessness, excessive or inappropriate guilt (sometimes to the point of delusion) nearly every day (not merely self- reproach or guilt about being sick.

8. Diminished ability to think or concentrate, or indecisiveness, nearly every day.

9. Recurrent thoughts of death (not just fear of dying), recurrent suicidal ideation without a specific plan, or a suicidal attempt or a specific plan for committing suicide.

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Depression is a clinical diagnosis and it is important to note that a psychiatrist will not give a diagnosis of depression to a person who just feels low.

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Caregivers may develop anxiety disorders as a result of the constant stress and unpredictability of caring for a child with ASD. Symptoms of anxiety may manifest as headaches, sleep disturbances, difficulty concentrating, irritability, muscle and joint pain, feelings of impending doom, palpitations, and more.

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The stress of caring for these children can exacerbate existing mental illnesses such as schizophrenia or bipolar affective disorder in parents. Consequently, this can lead to more frequent relapses and impair the caregiver's ability to function and care for their child.

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Other impacts on the caregiver include:

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Physical health: Caregivers may neglect their own health, skipping meals, losing sleep, and foregoing medical appointments. The stress can contribute to physical ailments and weaken immune systems.

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Burnout: The relentless demands of caregiving, coupled with the need for constant vigilance and advocacy for their child’s needs, can lead to caregiver burnout. This state of physical, emotional, and mental exhaustion can impair functioning and contribute to feelings of hopelessness and resentment.

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Social isolation: The unique needs of children with ASD can sometimes limit social interactions and opportunities for parents to connect with others. Social isolation can increase feelings of loneliness, exacerbate existing mental health issues, and lead to a sense of being overwhelmed or unsupported.

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Impact of Caregivers Stress on Individuals with ASD

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Impact of caregiver stress on individuals with ASD include:

1. Sensitivity to emotions: Individuals with ASD are sensitive to the emotions of those around them. They may pick up on caregivers’ stress, which can lead to heightened anxiety.

2. Changes in routine: Caregiver stress might disrupt routines and support structures that are crucial for individuals with autism.

3. Communication and interaction: Caregiver stress can affect communication and interactions, as caregivers may have less emotional bandwidth for engagement.

4. Emotional well-being: Caregiver stress can influence the emotional atmosphere at home, impacting the emotional well-being of individuals with autism.

So how do we manage our child’s exceptional needs and our own mental health?

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1. Self-care: Caregivers must prioritise self-care. This includes setting aside time for relation, exercise and pursuing personal interests.

2. Support systems. Building a strong support network is vital. Seek assistance from family, friends and support groups.

3. Seek professional help. Consult mental health professionals if caregiver stress leads to significant emotional or mental health challenges. Also seek guidance from therapists or counsellors who specialise in autism related challenges.

4. Open communication. Communicate openly about caregiver stress within the family. Fostering understanding and empathy is crucial.‍

5. Shared responsibilities. Distribute caregiving responsibilities among family members to alleviate stress and share the load. Parents of children with autism face a lot of stress that is hinged basically on the behaviour of the children. Some of the rural parents, however, have the opportunity of getting help sometimes from extended family members since special need schools are not located in their area or even nearby. The extended family relations sometimes offer financial help but from all indications, the modern urbanization has really eroded their help. (JI Anyawu et al 2019).

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Also Read: Essential Health Tips Nigerian Women Must Know Before They Clock 40

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In conclusion, the intricate relationship between caregiver stress and the well-being of individuals with autism underscores the critical need for a comprehensive approach to care. Débbo Africa stands unwavering in its commitment to supporting all female caregivers, particularly mothers, by providing a safe haven to openly discuss the challenges we collectively face as women nurturing society. Through professional guidance and steadfast support, we empower caregivers to navigate these complexities with confidence and resilience. By confronting and overcoming the obstacles posed by caregiver stress, we forge a path towards a brighter, more equitable future for all. Remember, self-care is the cornerstone of effective caregiving. Embrace it, nurture yourself, and in turn, you'll better nurture others. Join us in this transformative journey towards holistic care and empowerment.

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Sources:

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1. Schieve, L.A., Blumberg, S.J., Rice, C., Visser, S.N., & Boyle, C. (2007). The relationship between autism and parenting stress. Pediatrics, 119, S114-S121.
2. Connie Anderson (2010) Relieving parental stress and depression: how helping parents help children.
3. Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research, 50(3), 172-183.
4. International Statistical Classification of Diseases, version 11, WHO PG230
5. Olsson, M.B., & Hwang, C.P. (2001). Depression in mothers and fathers of children with intellectual disability. Journal of Intellectual Disability Research, 45(6), 535-543.
6. JI Anyawu et al (2019) Parenting stress in families of children with autism spectrum disorder: The roles of the extended family”.
7. Hastings, R.P, & Beck, A. (2004). Practitioner review: Stress intervention for parents of children with intellectual disabilities. Journal of Child Psychology and Psychiatry, 45(8), 1338-1349.

Disclaimer

The content provided herein is for informational purposes only and should not be considered a substitute for professional medical guidance. Individual health circumstances may vary, and readers are encouraged to seek appropriate medical evaluation and treatment based on their specific needs and conditions.

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