The struggles of working parents with autistic children
Let us start with understanding what autism is. More appropriately referred to as Autism spectrum disorder or “ASD”, it is a complex developmental condition that affects individuals in various aspects of life, particularly in how they interact with others, communicate, learn, and behave, often displaying restricted or repetitive behaviours or interests. Individuals with autism have different ways of learning, moving, or paying attention. This neurodevelopmental disorder not only puts enormous challenges on individuals with autism but also affects their families, particularly working parents.
Autism often requires multi-dimensional care, leading to several unique struggles for parents who must balance their work responsibilities with providing adequate support for their children. In this issue, we are highlighting the challenges working parents have with autistic children, and discussing the potential solutions and support systems needed.
1) Challenging Time Management:
One of the primary concerns for working parents with autistic children is managing their time effectively. The demands of their day-to-day working life often clash with the need for frequent therapy sessions, doctor appointments, and schooling for their children. Time spent on these essential activities limits the parents’ availability to invest in personal ambitions or relaxation, and giving needed attention to the siblings. These leads to increased stress levels. Juggling work commitments while ensuring uninterrupted support for autistic children becomes a daunting challenge for these parents.
2) Financial Burden:
Another significant struggle faced by working parents with autistic children is the financial burden. Autism care is not easily available, and when they are, they are not only time-consuming but also expensive. Specialized therapists, educators, medications, and interventions add up to significant expenses. And then there is the cost of getting their children to these facilities providing these aids. Moreover, the need for adaptability in living arrangements, including modifications in the physical environment, only escalates the overall financial strain. These parents often find themselves battling to meet the cost of autism-related needs while maintaining a stable income to support their families.
3) Emotional Exhaustion:
Caring for an autistic child requires substantial emotional investment. The constant need for patience, understanding, and support can wear down parents, leading to emotional exhaustion. Working parents with autistic children face the additional struggle of compartmentalizing their emotions when engaging with their workplace responsibilities. The emotional toll of struggling to meet both their child’s needs and their own work-related obligations creates immense stress and can lead to a decline in their overall mental well-being.
4) Limited Career Advancement:
The time and energy spent on providing care and support often impacts the career progression of working parents with autistic children. The constant need for flexibility, absenteeism due to therapy appointments or emergencies, and the requirement to advocate for their child’s rights adversely affect their professional growth. These parents often face limitations in their ability to commit to higher-ranking positions or take on challenging projects due to the unpredictability of their child’s condition. Consequently, they endure stalled professional growth and potentially lower financial rewards.
5) Challenges in Securing Reliable Childcare:
Finding appropriate childcare that adequately caters to the unique needs of autistic children is a constant challenge for working parents. Autistic children often require specialized attention, so finding reliable caregivers trained in understanding their specific needs becomes essential. However, a limited pool of child-minders with the necessary awareness and experience in working with autistic children further aggravates this struggle. Additionally, parents face constant fears of leaving their children in unfamiliar environments or without appropriate supervision, which can hinder their ability to focus at work.
6) Strained Marital and Parental Relationships:
Balancing the demands of autism care and professional life can put significant strain on marital and parental relationships. The constant stress, financial pressure, and time constraints can diminish quality time spent together as a family. The high demands of parenting an autistic child may lead to a lack of communication between spouses and added tension within the household. As a result, working parents may experience decreased emotional support from their partners, heightening the burden they bear.
Identifiers of Autism Spectrum Disorder
As a society we need to be more aware of Autism Spectrum Disorder. A more systematic and concerted approach must be made available to manage autistic children as to not deny them of their potential to contribute to the society just like any others. This starts with identifying who are possibly autistic. While there are efforts to manage “slow or difficult learners” in primary school, the screening for ASD must be made in advance, such as in pre-school or even earlier, where possible. For example, Mother and Child Clinics, must be sensitized to inquire about children’s social development. Doctors, nurses, and other health support staff must be familiar with simple give-aways like a child who:
- Avoids or does not keep eye contact
- Does not respond to name by 9 months of age
- Does not show facial expressions like happy, sad, angry, and surprised by 9 months of age
- Does not play simple interactive games like pat-a-cake by 12 months of age
- Uses few or no gestures by 12 months of age (for example, does not wave goodbye)
- Does not share interests with others by 15 months of age (for example, shows you an object that they like)
- Does not point to show you something interesting by 18 months of age
- Does not notice when others are hurt or upset by 24 months of age
- Does not notice other children and join them in play by 36 months of age
- Does not pretend to be something else, like a teacher or superhero, during play by 48 months of age
Other government agencies must also re-think about how they can provide services and support to together address the underlying problems raised above and work with available expertise at universities and NGOs.
Employers must also be aware of the problems that their employees face. There could be some with the challenges we have just highlighted above. This could only be achieved through an open and honest engagement process. A caring organization creating avenues for its staff to be responsible employees and parents earns both respect and loyalty.
In conclusion, working parents with autistic children face a multitude of challenges on various fronts. The strain imposed by time management, financial burdens, emotional exhaustion, limited career advancement, securing reliable childcare, and strained relationships deeply impact these parents’ lives. We need heightened awareness and improved support systems to be made available beyond current selected areas to provide potential solutions to alleviate these struggles. Increased workplace policies supporting flexibility and understanding, accessible specialized care, financial assistance programs, and community support groups can greatly benefit working parents, ensuring that they receive the support needed to balance their responsibilities as parents and employees towards a productive society.