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Being autistic brings both gifts and challenges. For example, we have often noticed that a dash of genius is within autism, manifesting as specific skills in mathematics or music or having perfect pitch or having a big compassionate heart and being an “animal whisperer.” We also know that our autistic community members have advanced every field of human endeavour from the arts to science to technology. There are musicians such as Mozart and Beethoven, artists such as van Gogh, activists such as Greta Thornburg, mathematicians such as Alan Turing, and advances in cattle handling and understanding autism because of Temple Grandin.
In fact, one of the common questions asked during our presentations is: if autism brings so many gifts, why are we struggling so much as parents to raise our autistic children? It is a good question and worthy of consideration. Our own clinical experience and much research show us that caregivers face multiple and various challenges while raising an autistic child, and commonly experience negative impacts on their physical health, psychological well-being, social network and finances. Parents are simultaneously delighted by their autistic children and challenged by them.
In this blog, we will discuss both the delights and the various challenges parents face, early signs of carer burnout, and ideas to prevent burnout based on our over 80 years of working with families who have one or more autistic children.
Many parents describe their enchantment in the way their child thinks, what their child is interested in, the idiosyncratic nature of their language and the quirkiness of their behaviour at times. Regardless of the child’s profile, there are many aspects that are endearing about an autistic child. For example, there is research to show that participants in a study that were blind to whether the child was autistic or not found the laughter of autistic children more engaging and delightful than the laughter of non-autistic children. Many parents have charming stories about their autistic speaking child’s use of language, including neologisms and unusual phrases to describe life. For example, Tony’s sister-in-law referred to ice cubes as “water bones” and her father’s electric razor as the “hoover of the face”.
A child may be able to recite every element in the periodic table or learned to read before she was 3 years old or has memories as an infant in the cot. He may be able to draw with phenomenal talent from an early age or is so tender and in tune with younger children or his autistic sibling. She may have an energy that is just so comfortable to “be with,” no need for talking or looking at each other. His kindness and compassion from an early age may be striking.
We often tell a joke in our presentations, that autism is inherited, you get it from your children. There is a grain of truth in this joke, in that when you are raising an autistic child, the whole family needs to accommodate autism, creating an autism-friendly home, or adopt the characteristics of autism themselves. Spontaneity becomes a distant memory as schedules, routine and advance notice of change become necessary to survive the day. Social gatherings are minimised or brief and sometimes even avoided for months at a time, because they seem to trigger more meltdowns and stress for the autistic child and parents. It is easier to cook bland meals that will suit the autistic child, rather than being adventurous with new recipes. The sensory environment becomes toned down to the level that the autistic child can cope with.
Whilst all these adaptations are very helpful for the autistic child, the rest of the family can start to feel socially isolated, and that life is rather “toned down” and has lost some of its colour and excitement.
Autism is rarely experienced on its own, but commonly comes along with other conditions such as ADHD, anxiety disorders and other mental health conditions such as , depression , and medical conditions. We have found that the regular meltdowns that can involve both verbal and physical aggression are extremely taxing for families. A child experiencing brief but intense depression ‘attacks’, suicidal ideation and/or self-harm can be devastating for a parent, where the adage “you are only as happy as your least happy child” holds true for many parents.
Typical parenting practices do not tend to work for the autistic child as with a typical child, leading to potential arguments between parents about ways to raise and discipline their child, as well as confusion about what alternative strategies might work. Finding professionals that are skilled and experienced in autism is still very difficult in many areas of the world. Siblings do not understand autism and can be angry and perplexed about why their brother or sister is treated differently and seems to have different rules for them.
One of the core features of autism is “theory of mind” difficulties, that is, difficulty in understanding someone else’s perspective. Problems with theory of mind play out in all the autistic child’s relationships, and never more so than at home with parents and siblings. Whilst all children are egocentric to some extent, the autistic child can take this to new levels, not because they are selfish or inconsiderate, but because they are not innately wired to consider how their actions and words may affect other people. These problems are especially intense when the child is tired, hungry, upset or overwhelmed, i.e., most of the time. Other members of the family often feel under-appreciated and that the relationship they have with the autistic family member is not reciprocal. Resentment can build over time with tense family dynamics occurring where both parties feel misunderstood and unhappy.
For many autistic children affection and expressions of love such as a hug are not comforting, with a hug being perceived as being squeezed, and why would someone squeeze you when you are sad or upset? As a result, the child can be very rejective to well-meaning loving parents, leading the parent to feel sad and inadequate that they cannot comfort their child, and cannot enjoy physical affection with them. Expressions of love in verbal communication, such as the use of compliments and terms of endearment, may also be rejected by the autistic child. Parents can start to wonder if their autistic child loves them, and also whether the autistic child can feel and enjoy their love. Not being able to be the parent that they hoped and wished to be, parents can start to feel depressed.
Autism is the most invisible of the hidden disabilities. Members of the extended family, grandparents, uncles and aunts, may disbelieve the autism diagnosis, and instead blame the parents for what they misperceive as being bad behaviour by the child. Parents can feel blamed and misunderstood rather than supported by extended family, and family rifts and resentment are common.
As a result of a lack of understanding by family, friends and community, and increased social withdrawal, families with an autistic child can feel very socially isolated and start to internalise blame and shame. As one parent recently said, “I just thought I was a sh** mum”.
The start of carer burnout can be insidious, initially not noticed by the person themselves. The early signs are usually fatigue and social withdrawal, where it just feels like too much effort to catch up with friends and family. The person starts to avoid other people and sees them as a drain on their energies rather than a replenishment. The person may cease to enjoy activities they used to find pleasurable, like walking, art or cooking, because they feel so tired all the time.
Low mood, negativity and irritability are often a feature of carer burnout, where the person starts to feel there is not much to look forward to and tends toward a pessimistic outlook. Dreading when the next bad thing may happen, they start to feel that there is not much good about life, themselves, or their future.
Higher levels of anxiety and stress start, where the person becomes a worrier, or even more of a worrier than they were. They tend to have negative thoughts where they imagine catastrophes occurring or negative outcomes for their child and for themselves on a regular basis and a negative attitude to helpful suggestions from family members, teachers and therapists, with comments such as ‘I know it won’t work’, or ‘we’ve tried that’.
Sleep may become more elusive, getting to sleep, staying asleep, and waking up too early. We know that as humans we process difficult emotions during sleep, which helps us to cope with adversity. Thus, disrupted sleep unfortunately adds to feelings of low mood, anxiety and stress.
Carers who are on the verge of burnout usually report that they are “at the end of their tether” and do not have the energy to cope any more, even though they want to. They can experience changes in appetite and weight and tend to become sick more often.
Whether carer burnout is periodic or chronic, fortunately, there is much that you can do.
It is more wonderful and more terrifying than we will possibly have imagined parenting an autistic child. Acknowledge both the wonder and the challenges and make the first step today toward self-care. Remember, if you are not here because of a catastrophe due to burnout, you cannot care for your loved one at all. Reach out for help and remember that you are not alone.
Gaining information is a very valuable way of feeling empowered to know what to do and how to do it. Our on-demand course Autism for Parents and Carers may be of interest to you.