Caring for ASD caregivers

DR YANSIE ROLSTON Monday, May 8 2017

IT WAS a pleasure to read the diverse contributions in the Autism Awareness Supplement published in last Thursday’s paper, and I was particularly heartened by Prof Gerard Hutchinson’s article on Emotional Problems in Autistic Spectrum Disorder (ASD). It is well-documented that a high percentage of people with ASD (approximately 80 percent) have mental ill health, but what usually goes unaddressed is the mental health of their caregivers.

There is much to be gained from caregiving. It can be very rewarding, satisfying and pleasurable, but it is also a complex and burdensome role which society believes should be faced with fortitude, stoicism and an air of disaffectedness. But that’s misplaced bravado because between 40 percent to 70 percent of caregivers have symptoms of clinical depression, and co-existing anxiety disorders.

Most of those who care for a family member with low-functioning ASD would have found themselves suddenly thrust into an unfamiliar and intimidating role. Nonetheless, it’s one done with sterling devotion even to the detriment of their own mental wellness.

ASD caregiving is often a longterm commitment fraught with difficulties and personal sacrifices, that sometimes leads to emotional burnout. Yet, most ignore the link between their own mental health frailty and their caregiving role.

There are many intervening variables in low-functioning ASD caregiving which can make it emotionally onerous, such as coping with the complexities of the disorder with little or no appreciation from the affected individual. This usually happens because those with the disorder are generally not aware of other peoples’ feelings, and they can be prone to giving inappropriate or insensitive emotional responses to situations. They may also struggle with understanding intention, and with expressing empathy.

This can frustrate the carer who is also being denied the emotionally enhancing effects of receiving overt expressions of gratitude. In other words, there are times when caregiving can feel like a thankless chore.

The mental well-being of caregivers (especially if they are of an old age) may also be affected by their co-morbidity of chronic physical ailments such as hypertension, diabetes or heart disease. Additionally, if the caregiver is a family member unable to work due to the responsibility, the ensuing financial burden can undoubtedly exacerbate mental discomfort. There are also carers who may have forfeited financially and psychologically rewarding careers or made other social sacrifices to look after a family member, and though they may sometimes feel resentful of the situation, they do their best to maintain a façade of being unaffected.

Other societal factors also impact on the mental well-being of caregivers, such as those instances of discrimination when unkind or cruel comments are made about the person with ASD. Prejudice and stigma have an emotional impact on the entire family, not just the affected person.

Those factors coupled with the caregiver’s constant worry about whether or not they are providing the right quality of care, will invariably impact on their mental health and self-efficacy.

Therefore, they need to be aware of their own vulnerabilities and pay attention to their psychological wellness by: Looking out for signs and symptoms of exhaustion, anxiety, stress or depression, and seek appropriate support and early interventions.

As difficult as it may be, it is important that caregivers remind themselves that they are not superhuman, and everyone has limitations.

On those occasions when feelings of guilt, resentment or anger emerge, the key is to acknowledge them, accept them, and refrain from self-chastisement – they are just natural emotional responses to difficult circumstances.

Finding relief in respite by taking time out to refresh, renew and re-energise makes for more effective caregiving. Reaching out to others and asking for help can be difficult, but it is vitally important that carers attend to themselves and their own needs, and indulge in pleasurable things from time to time.

It is well documented that when caregiving is performed with kindness, love and loyalty, those connections can release mood-enhancing hormones that improve mental health, and by carrying out the duties with a continued sense of admirable devotion, while also finding time to laugh, will decrease stress hormones and enhance emotional wellness.

Dr Yansie Rolston FRSA is a UK-based disability and mental health specialist advisor. She is a social strategist and trainer who works internationally at various levels of government, business and civil society. Contact her at

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