Care for the Caregiver: managing a child living with autism while taking care of yourself

Facing the diagnosis of autism in your child is a stark reality many parents have to confront.  Not only does this entail meeting the challenges the various deficits will bring about, it also requires an honest look at how you will prioritise yourself going forward.

Autism affects children in many different ways, such as: speech, poor social interaction, inappropriate responses, sensory confusion and repetitive behavior. They are also dependent on routines and sensitive to external stimuli. In addition, they often have difficulty in dealing with change and can be defiant when being guided towards specific, expected behaviours.

All of this can be exhausting for the primary caregiver, and can affect the balance of family relationships. When so much time has to be dedicated to one member of the family above others, considerable stress may be caused to the caregiver who has other family responsibilities. It is important that you become aware of this stress and plan to take steps to safeguard your own health and wellbeing in order to prevent burnout.

Risk factors for caregiver stress

Invariably, when caring for a child living with autism, there are some basic circumstances that can add to the issue of stress and burnout:

• most caregivers women, and most often the mother of the child, and very often have other responsibilities in the home;
• if the primary caregivers do not have the advantage of a good education, any understanding of the condition may be compromised, and therefore patience and compassion as well;
• as the child requires round the clock care, the opportunity to get away from the situation and take ‘time off’ is often difficult;
• financial difficulties will further escalate  the problem, especially if one of the parents is kept from gainful employment while they are caring for the child, and as a result becomes frustrated;
• feelings of depression can easily arise because the caregiver feels that the situation has been forced upon them, and there is no choice left in their lives.

Indications that you are not coping

Any parent, when faced with a child living on the autism spectrum, knows that an enormous amount of effort will be required to help their child in whatever way possible – from getting outside help through consultation and therapy – to applying patience and care in the home. While it may seem daunting at first, many parents come to fully understand their child and his needs, and how they can apply the necessary support to ensure the best upbringing possible.

However, this dedication can present difficulties over time if the caregiver suffers burnout after a couple of years of concerted work effort and attention to these demands. Burnout is physical, emotional, and mental exhaustion that can occur when you neglect your own needs. Long hours, prolonged stress, and the physical and emotional demands of care-giving can have a seriously negative impact on your well-being.

If you begin to experience a wide range of emotions, including sadness, guilt, anger, and resentment – or feeling overwhelmed or constantly worried – listen to these emotions, they are telling you that you are not coping positively with the situation. Some parents may even feel a deep sense of loss, even grieving, for the vision of happy parenting they once hoped for. You need to watch for these important warning signs:

• feeling tired often
• gaining or losing weight
• getting too much sleep or not enough sleep
• becoming easily irritated or angry
• losing interest in activities you used to enjoy
• experiencing frequent headaches, aches or pains, or other physical problems
• turning more often to alcohol or drugs, including prescription medication.

What you need to do to cope more effectively

Too much stress, over a long period of time, can be harmful to your health. Understanding your own needs is key to personal well-being. There are times when you need to take a break – and you’re going to need backup from people who can help you to take time off. Remember, there’s no need to feel guilty about this: the emotional and physical stress of caregiving is common. Let’s look at how beneficial this practice will be:

• You need to take time regularly to recharge: read, listen to music, write in your journal, or just do stuff that you love to do. There are professional services you can make use of – or another family member can fill in for you.

• Take the time away before you reach overload – know your limits and know when you need to take time off to reflect and rejuvenate yourself.
• Find a sense of balance in your life by doing things that stimulate your creativity and sense of enjoyment of life.

Develop your management skills

• Time management – set priorities each day, and only do what is most important. Be realistic by breaking tasks into smaller ‘bites’ so you can feel a sense of achievement and not feel overwhelmed.
• See a professional counsellor if required, someone who could help you to work through any negativity that may be draining you, and which may be preventing you from asking for help.
• Set your own personal health goals: deep breathing and relaxation; ensure a balanced, healthy diet and regular exercise; keep physically active – take time for walking and other activities; get enough sleep; make sure you keep up regular dental and medical appointments.
• Beware of feeling lonely or isolated – stay connected with others, build relationships, and make an effort to spend quality time with family and friends. Join a support group and meet other caregivers, ensuring that you get regular support.
• Make sure you research any caregiving services such as transportation, meal delivery or housekeeping that may be available, and plan how to make use of them.

Remember, you are not being selfish when you take time for yourself. To care for others effectively, you need to be physically, emotionally and spiritually well. Above all, do not feel you cannot accept help from others, and do not be afraid to ask.