Co-author: Ricole Tay
Parenting a child on the autism spectrum can be challenging. Parents can experience a plethora of feelings upon learning that their child is on the spectrum. Commonly, parents may grieve over the loss of a future they envisioned for themselves and their children. For some, the diagnosis could evoke self-blame or guilt as they believe it was them who caused the child to have ASD. Feelings of guilt could also arise from parents wanting a break from caring for their child with ASD. Generally, having the knowledge and financial resources to care for and support a child with ASD could be the biggest source of stress for parents. Although there are organisations and support groups for children with ASD and caregivers of children with ASD, many caregivers may feel helpless and unsure of the help they can tap on. In this article, we hope to share more about autism and what parents may consider if their child is on the spectrum.
What is autism?
Autism is a lifelong neurodevelopmental condition. It is often referred to as autism spectrum disorder (ASD) as it can present differently between individuals and can vary greatly in severity. For some, the symptoms might be more subtle and are only observable in specific contexts. Autism can affect people across different races, genders, and ethnicities. According to the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders, some hallmark symptoms of autism are 1) persistent deficits in social communication and interaction 2) restricted, repetitive patterns of behaviour and interests. Specifically, here are the diagnostic criteria for ASD:
Persistent deficits in social communication and interaction in all of the following areas:
Difficulties in social-emotional reciprocity. Deficits in engaging with others, expressing/understanding emotions, or sharing interests with others.
Difficulties in non-verbal communication. Unable to understand the use of facial expressions or gestures for communication. Individuals make little or inconsistent eye contact and have body language that does not match what they say.
Unable to develop and maintain relationships with other people except caregivers. Lack of interest in others, unable to respond differently to different context, and difficulties in sharing imaginative play with others.
Interaction, restricted, repetitive patterns of behaviour and interests. Demonstrates at least 2 of the following:
Repetition. Speech, motor movements, uses of objects or phrases.
Rigidity. Adheres strictly to routines, ritualised patterns of verbal/nonverbal behaviour, and extreme resistance to change.
Restricted interests with intense focus. Strong attachment to unusual objects or obsessions with interests.
Increased or decreased reactivity to sensory input. For example, one may not react to pain or has a strong dislike for specific sounds.
Coping with the stress of raising a child with autism
There are many factors to consider when raising a child with autism. From learning how to communicate and educate them, balancing one’s attention with the other family members, and financial issues, these factors can cause immense stress on the caregivers. Naturally, a child with ASD would require more attention and resources. Hence, it can be difficult for parents to balance the needs of all their children. Furthermore, parents would need to make many lifestyle changes and accommodations to create an environment to support the needs of the child. In some instances, a parent may quit their job to care for the child. Between quality healthcare, therapy and special needs schools, parents can feel overwhelmed by the seemingly neverending things to do. In addition, as individuals in the family can have a different take on how to manage the child, the differences in parenting might strain the relationship between parents and family members.
Next steps for Caregivers
Early intervention is crucial. This allows the child to have better prognosis. Tapping on organisations, support groups, and services early can provide caregivers with more options regarding the type of support they can give the child. For example, approaching organisations or support groups can help one to be informed of affordable early intervention programmes and schools. Furthermore, support groups can be helpful for caregivers, especially when they feel overwhelmed. It can be comforting to talk to individuals who may have or are going through similar hardships, as they are more likely to understand the stresses of being a caregiver for a child with ASD.
Establish your support system. Having a support system can help when one needs a break from all their childcare duties. Having a conversation or engaging in activities unrelated to childcare can allow one to recharge. In some instances, one’s support system may even be able to help with childcare duties.
Seeking professional therapy. Caregivers can experience burnout, and waves of emotions such as anger, stress, grief and helplessness, to name a few. Speaking to a professional can help one navigate these feelings and find healthy coping mechanisms.
Avoid blaming oneself. Past studies have demonstrated a long history of parents blaming themselves for their child’s autism due to the influence of misconceptions. Howbeit, it is essential to remember that ASD is a complex disorder, and it is a result of many factors.
What can caregivers do to help the child?
Understand ASD. Doing so allows one to understand the child’s behaviours, difficulties, cues, and temperaments. This would enable more efficient communication, identification of triggers, and suitable parenting methods.
Positive reinforcement. Like any other children, individuals on the spectrum are more likely to react well to rewards and incentives. Positive reinforcements encourage and help children with ASD learn and behave appropriately.
Recognise the child’s strengths and weaknesses. Allow the child to explore and discover the areas where the child excels and struggles. For example, a child with autism may have trouble with social interactions but is excellent in a particular subject. Recognising one’s strengths can help both the child and caregiver work towards something productive and meaningful for the child.
Establish a routine. Individuals on the spectrum may have difficulty adjusting to new environments and spontaneous events. To help the child thrive, following a routine enables them to know what to expect, when, and how to react appropriately.
Talking to the child about autism
High-functioning individuals with autism may be able to pick up cues that they are different from others - perhaps in ways they are being treated and looked at by others or when they realise that they are not attending regular schools or taking the educational route that the majority is. When such doubts arise, the child may begin questioning their caregivers to try to understand their experiences. Some caregivers may choose to avoid sharing about the diagnosis as they fear they may not be able to explain it appropriately or that their child may feel hurt from knowing they are different. While caregivers might assume this is helpful, it can cause the child more confusion in the long run. Children pick up on others’ feelings and attitudes, which shape how they perceive themselves. They may develop the idea that they should hide their autism or feel embarrassed if their caregivers keep it a secret or find it uncomfortable to talk about it. Hence, it is vital for caregivers to embrace the child’s differences and to have open conversations about the diagnosis.
We understand that raising a child on the spectrum can be challenging. Caregivers may feel helpless and stressed, but remember you are not alone. There are many resources available for one to reach out to. Remember that no two individuals on the spectrum are the same - what works for one might not work for another. Exploring and noting what works for the child is essential. As Claire Scovell Lazebink, an American novelist with a child on the spectrum, once said, ‘Don’t think that there’s a better child ‘hiding’ behind the autism. This is your child. Love the child in front of you. Encourage his strengths, celebrate his quirks and improve his weaknesses, the way you would with any child’. Remember that caregivers have the most direct impact on the child; as such, the first step starts with you. Let us learn to build a safe and inclusive space for children with ASD.