Autism in Mauritius: The Responsibility of Parents

We have just completed the Autism month in April and apart from a few mentions here and there, not many are really concerned about the state of autism in Mauritius.

There are a few NGOs that are militating to put autism high on the medical agenda. It is true that in each regional hospital of the Ministry of Health, there is a speech-Language Therapy Service that caters for persons with communication disorders. The Ministry of Education is doing whatever it can to support NGOs in providing the most appropriate educational facilities to special schools that cater to the educational needs of autistic children. There are certainly many pockets of high practice in many institutions and we have started to be sensitized to autism in Mauritius.

In the developed world, autism is one of the most talked-about medical conditions today. It is believed that 1 out of 88 children in the USA suffer from some form of autism. Many celebrities have children affected by autism such as MANU football player Paul Scholes’s son, actor Sylvester Stallone’s youngest son, John Travolta and Kelly Preston’s son, (Jett had autism before sadly passing away at the age of 16 after he had a seizure), sportsman Dan Marino’s son, singer Tony Braxton, and actress Jenny McCarthy’s son (Evan couldn’t talk — now he talks. Evan couldn’t make eye contact — now he makes eye contact. Evan was antisocial — now he makes friends,” she told Time magazine).

What is autism, exactly? What does it mean if a child is “on the spectrum”? Can these conditions be treated? When a child is having some developmental difficulties and his/her doctor has suggested that he/she be evaluated for an autism spectrum disorder, parents are generally overwhelmed, and they may be trying to make sense out of conflicting information.

Autism spectrum disorders (ASDs) are complex conditions, and our understanding of them is evolving rapidly as researchers get more and more answers. An ASD tends to affect a child’s ability to interact and communicate with others and may cause him to have behavioural challenges. Different children with ASDs are affected in very different ways. There’s currently no “cure,” but increasingly some therapies can often be very effective in helping children with ASDs gain the skills they’re having problems with.

ASDs are three to four times more common in boys than girls; they affect children in all ethnic and socioeconomic groups. Exactly what caused a child’s ASD usually can’t be determined. It appears that ASDs are sometimes caused, at least in part, by DNA changes. Understanding the factors that may lead to ASDs is an active area of research. Behavioural symptoms of ASDs typically appear before a child is 3, although more subtle differences can appear even in the first year of life. There’s no laboratory test that can tell whether a child has or will develop an ASD. Currently, the diagnosis is based solely on the child’s behaviour and development. Research has shown that early diagnosis and therapy can be enormously helpful in improving behaviours and abilities.

Doctors, educational institutions and therapists can go only a certain distance to help the autistic child. However, the biggest responsibility rests with both father and mother who are raising an autistic child. The responsibilities and challenges associated with raising and caring for a child with a disability are nearly unsurmountable. The amount of extra care and therapy required to raise a child with a disability force father and mother to make several difficult decisions that often also impact their family’s well-being. Both father and mother need to work together, to get closer, to understand each other better and to make equal sacrifices for the wellbeing of their child.

More than fathers, mothers of autistic children, being much closer to their baby, are probably the best ones to help an autistic child, especially at a very young age. Most mothers who come to know that their child is affected by autism abandon their present trend of life to concentrate on the needs of their autistic child, because there are major time-consuming responsibilities associated with raising an autistic child. They start NGOs, carry out awareness campaigns, and fight hard for government to provide more facilities to institutions that handle autistic children, give up their career to carry out research, take over the case worker role and become their child’s caregiver, therapist, transporter and main advocate.

Government assistance programs can go a long way in helping parents who are forced to cut back work hours to care for their child to make ends meet. Depending on the nature and severity of the disability, both father and mother of children with autism find that the prospect of coordinating services, arranging for child care and providing an appropriate educational setting are overwhelming tasks. Even affluent parents and those with strong familial support find it difficult to care for autistic children, particularly when there are other children in the family. The divorce rate among families with disabled children in the USA is 84 percent.

For many women, the question of working is really less of a question and more of a personal choice. Some women who have spent years pursuing a degree or building experience as a professional do not want to limit themselves to working as full time caregivers. These women take pride in their career and business accomplishments. When women are faced with having to grow up an autistic child, they have to totally reevaluate their career and their new obligations as a caretaker for a child with autism spectrum disorder.

Some parents believe that early accepting, that a child with autism is not going to grow out of it despite the very best treatment, is probably the best attitude to take. They then fit that child into their own life’s schedule, rather than completely rearranging their life around the child.

Though it has been clearly demonstrated that parents need to sacrifice their own needs for the upbringing of their autistic child, some parents, without any sense of guilt or remorse, are bent on their own selfish needs that they try to pursue. Some modern mothers do find time from their loaded schedules to have a “me time”, put new colours or change their hairstyles with new shades every three months. Of course, the traditional sense of selfless duty and self-abnegation associated with being a caring and devoted mother may have been lost in some women’s quest for modernity and woman emancipation.

Autistic mothers and fathers become actively involved in the autism community. They spend more time connecting with others who have similar problems in dealing with many of their emotions and concerns. Working parents with loaded schedules cannot meet the many needs of an autistic child. In these moments, grandparents, other family members and friends can provide assistance with every aspect of a child’s care, from babysitting to driving, normally lift from mom’s shoulders some of the daily tasks that are her responsibility.

Some parents may want to have it all. It requires a lot of sacrifice to love, nurture and care for a child with autism while at the same time maintaining one’s career. Generally when a child has just been diagnosed with an autism spectrum disorder, the parents may feel like they have entered a maze, trying to find the best therapies to help their child communicate and express himself, have meaningful interactions with others, and learn and develop the skills he needs. It takes time, patience and great determination to identify the skills he’s doing well with. Only parents and grandparents (not doctors, not speech therapists, not teachers at school, and not school psychologists) can provide information on trends and patterns that they can see in their child’s development. Such identification cannot be done by babysitters or those who are not all the time in the company of the autistic child. Parents can give such important information to their child’s medical and educational providers, because the latter are often able to use the child’s strengths to help him learn and overcome his challenges.

For instance, some children are very visual learners—they may not have very good language abilities and don’t understand if you explain something verbally, whereas using a picture can help them instantly grasp a new idea. Other children may not make good eye contact, but may be able to listen well and understand spoken requests and explanations. In short both parents cannot be replaced in parenting an autistic child.

There’s no one educational approach that’s best for every child. An autistic child may need to learn in a special classroom, or he may be part of a regular class and get special assistance there. Different children will also need different related therapies, such as occupational or behavioural therapies.

* Published in print edition on 9 May 2014