Autism is a lifelong neurological condition. It is a pervasive developmental disorder that typically starts showing in the first three years of life as differences in development, referred to as a triad of impairments in communication (verbal and non-verbal), social interaction and behaviour.
Autism is a spectrum disorder because the severity of symptoms may range from mild difficulties in social interaction or learning, to a complex mix of unusual behaviours that affect everyday functioning. Autism is often characterised by uneven skill development, and not a classical delay in developing skills. There are differences in the way sensory inputs are taken into the brain, and there are atypical ways of relating to people, objects and events. Some children with autism remain non-verbal and some develop speech. No two children on the autism spectrum possess the same skills or challenges.
Autism is not a rare or uncommon disorder. It is the third most common developmental disorder. About 1 in 68 people have autism and the overall incidence of autism is believed to be consistent around the globe (CDC, 2014). This means that there are over 18 million individuals with autism in India. Though the exact cause for autism remains unknown, it is believed to be caused by a combination of genetic and environmental factors.
Challenges faced by parents of children with autism:
Though there is awareness among professionals, diagnosing autism becomes a challenge because poor multi-sensory stimulation, lack of play, and excessive gadget use also mimic some of its symptoms. There is misuse of diagnosis in some parts of India, and lack of diagnosis in other parts of the country.
Many parents find it hard to come to terms with the diagnosis, and are often misguided by elders in the family. They offer excuses such as, 'He is just a child', 'Her father also had delayed speech', 'Boys always speak late', and so on. In autism, early diagnosis and intervention are crucial.
Since each child with autism is different, setting a standard therapy for all becomes quite a challenge. There is no single strategy that works with all children and some interventional strategies may not work all the time.
The limiting mindset and lack of trained educators to support learning within inclusive classrooms in schools, are major hurdles faced by parents. Sadly, many schools that claim to be progressive, actually tend to be regressive when it comes to providing meaningful opportunities for children who learn differently.
A child on the spectrum often needs a combination of occupational therapy, speech therapy, special education and structured teaching. Apart from dealing with the financial burden, coordinating the therapies and ensuring that the child is receiving what is needed, is a huge challenge for the family.
Since social skills are often affected, finding empathetic playmates who can help the child with autism adapt to different situations, often becomes an uphill task.
Overload of information from the Internet, including claims for instant cures, is one of the biggest challenges most hopeful parents face.
In several cases, owing to the superstitious beliefs surrounding mental health, many parents end up being cut off from their family. They are bogged down by astrological practices and religious traditions that delay seeking scientific and effective therapies.
Stress in parents
As with any diagnosis with an ambiguous prognosis, autism is a very challenging and stressful experience for the family, especially the parents. They often experience high levels of stress because of internal, external or physiological stressors or, a combination of all three. Let's look at these stressors in detail:
Internal stressors arise from attitudes, perceptions, beliefs, assumptions and expectations. For example, these include:
As a parent, I am expected to give 100% and never take a break or rest.
I cannot trust or allow my child to be taken care of or supported, by anyone else.
The success or failure of my child depends entirely on me, and I must spend every moment possible to achieve success.
I must be a role model for other parents.
Tips to cope with internal stressors:
Have realistic expectations and a mindful attitude. This can make a huge difference.
Get professional help to identify challenges and stressors, and deal with them effectively. This goes a long way in reducing stress.
Surround yourself with supportive people who can help whenever there is an increase in the negative self-talk.
Stay away from sources of information, advice and guidance that increase/cause stress. Trust your intuition when it comes to your child. Often, professionals underestimate the parent's awareness of their child's need and requirements. Assess risks versus benefits for all that you do. Choose the path that is most child-friendly.
Understand that every state, including anger, grief, helplessness, guilt and exhaustion, is a part of the process. Do not deny yourself the right to feel any of these emotions. Seek professional help to develop emotional regulation. Not everyone is capable of meditating and finding inner peace - some can do well with just a little support.
Work with your child as gently as you can, but remain firm with structure and routines. Always stay focussed on the process and not just the outcome. Children with autism respond very well when they know that their needs are being understood and supported. The stress behaviours only manifest when we push too much, too often and too soon.
External stressors usually arise because family, friends, therapists, schools and others do not understand or support the child and the family. For example:
The school refuses to support the child who has a meltdown in class, and issues a TC or isolates the child.
Lack of qualified professionals capable of supporting the child.
Child's behaviour in crowded spaces or in new places, often being misunderstood (children are often harassed at airport security and even in malls, because they come across as 'badly behaved').
Poorly-coordinated support from governmental agencies in issuing certificates and services meant for children with special needs.
Tips to cope with external stressors:
It is important for parents to spend time updating themselves through credible courses and parent support groups to ensure that they are aware of what needs to be done. Knowledge about the condition and support from parents who may have overcome similar challenges is essential. In India, the most successful autism interventions are steered by groups started and led ably by parent-professionals.
Work together to push for policies, legislations and rights.
Identify and analyse each challenge and look for the best possible option.
Physiological stressors are caused by self-neglect like lack of sleep or inconsistent sleep patterns, poor diet and lack of recreation and exercise. This imbalance often shows up as constant but minor illnesses resistant to medical treatment. This happens because many parents find it difficult to prioritise their own needs while taking care of a child with special needs.
Tips to cope with physiological stressors:
Take turns for self-care, as it is very important for both parents. Remember, self-care is sanity, not vanity.
Develop regular routines for sleep, exercise and recreation.
Ensure that you take time to do things for yourself. Enlist the help of family, friends and professionals whenever needed, to make time for yourself.
There is no quick-fix solution for autism. However, a child or an adult on the autism spectrum always respond well when they feel supported and understood; given a structured and consistent routine, and understand what is expected of them. Dealing with the challenges and stressors therefore, is essential as it helps parents resonate with and address the true needs of the child over time.
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