Parenting is a full-time job and it becomes more so when you have a special needs child to care for. Being a caregiver to an autistic person comes with increased stress. It can be exhausting – both physically and emotionally. It can be especially taxing for parents whose children fall on the severe end of the autistic spectrum and need constant supervision. This, coupled with limited or no access to special care and intervention at school, can add to the struggles of the caregivers, leading to caregiver burnout.
In addition to the long-term juggle between caring for the child, work, and household chores, there’s another looming fear. Autism caregivers are often burdened with the question of who will look after their child once they’re not around. After all, as the child grows up to become stronger and heavier, the caregiver’s physical strength only diminishes.
Since October is the mental health awareness month, we will discuss an often-overlooked aspect of autism caregiving – caregiver burnout and how to prevent it.
The negative consequences
A study aimed at recognising and examining the stress associated with caregiving found that the perceived stress score of Malaysian autism caregivers recruited for the study was 4.72 on the Perceived Stress Scale-10 (PSS-10) which is considerably higher than average.
Another study conducted in the state of Tamil Nadu, India, found that bringing up an autistic child is a significant chronic stressor. It often leads to the disruption of various areas of adult life and is also known to cause mental illnesses like depression among caregivers. Early recognition and management of the burden are of immense value not only for the wellbeing of the caregiver but also of the child.
Autism Caregiver Burnout
Chronic stress and persistent worrying can have a negative impact on the overall wellbeing of the caregiver leading to autism caregiver’s burnout. It can manifest itself in various forms such as chronic fatigue, frequent bouts of flu, general ill-health, etc (physical symptoms) and inattentiveness, irritability, insomnia, etc (cognitive symptoms).
Here are a few ways in which caregivers can cope with the stress and prevent complete burnout:
- Understand limits
This is perhaps the most common issue that caregivers struggle with – understanding and accepting the fact that there is a limit to what you as a caregiver can do. It is the first step in acknowledging the possibility of burnout and preventing it.
- Accept help
If you are fortunate enough to be able to ask for help – from spouse, friends, relatives, neighbours – ask for it and accept it graciously. Make a clear list of things you need help with and let them choose the way in which they can help. If you end up getting some time off, along with running pending errands, treat yourself to some coffee in solitude and give your mind a chance to relax. You deserve it.
- Enrol in treatment programs
Therapies and treatment programs that can keep your child engaged in meaningful activities have shown a positive impact on the severity of symptoms. It will also allow you some free time which you can use to care for yourself. Interventions and therapies are also a positive step towards building a team of people who you can trust to care for your child in times of need.
- Don’t ignore your health
Don’t put off going to the doctor. If you have constant headaches or a chronic backache, it is a good idea to get yourself checked before the situation worsens. Take some time for a quick run around the block or keep up with a basic, home workout to stay fit. It is important to not fall into the trappings of parental guilt. It is normal to have thoughts like ‘I should be doing more,’ ‘I should have known better,’ ‘I should be better prepared,’ etc. However, try not to engage with them and give yourself some credit. You are doing just fine.
- Talk to someone
Talking to someone, especially someone who has been in your shoes can help immensely. Consider joining an online forum or a support group for parents of kids with special needs. Listening to people with a similar story as yours can be a source of great strength. It can also help you in gaining a different perspective on things.
It is important to remember that ‘you cannot pour from an empty cup’. Allowing yourself some time to recharge and recoup will only make things better for both you and your child. It can be a few minutes of me-time with a cup of tea or even reading the newspaper.