Is there gender equality for mothers with autistic children?

In late March, I was in New York City for the 62nd Commission on the Status of Women (CSW). My Kenyan friend Jaki Mathiga, who is mother to a 12-year-old boy with Autism, and her friends organised the first-ever panel there to highlight the co-relation between autism and gender equality. It peaked my curiosity. In solidarity and so I could learn more about this oft unspoken issue, I attended the session. Asking the question, Is there gender equality for mothers with autistic children?

Can women achieve true gender equality if they have autistic children?

The National Autism Society of the UK estimates that about 700,000 people are on the autism spectrum. That makes it roughly 1 in 100 people, with its prevalence being more amongst males than females. However, the study also states that more women are under diagnosed for autism. In India, 1 in 68 children are diagnosed as being autistic, whilst in Kenya 800,000 people are diagnosed with this disorder.

Autistic Spectrum Disorder (ASD) is a serious, incurable mental disorder that hampers one's ability to interact and communicate. This condition is present from early childhood and can be diagnosed as early as 18 months of age. "ASD is the fastest growing developmental disability all over the world, including India," says Dr Archana Nayar, from Autism Centre For Excellence (ACE).

This brings me back to the theme of the session at CSW - Can women achieve true gender equality if they have autistic children?

Women have very little help or support from their husbands or extended families. And the chances of the 2nd and 3rd child being autistic is also high

Mathiga shared how she conducted research with mothers with autistic children in Kenya where mothers were blamed for their children’s autism; they were accused of eating the wrong thing during pregnancy, doing extra physical activities that put a strain on their bodies, having extra marital affairs or just being “bad” people. Further, some people attributed autism to witchcraft or demonic possession.

Most often these women have very little help or support from their husbands or extended families. And the chances of the 2nd and 3rd child being autistic is also high. This poses additional challenges for mothers as most of the burden of caring for the child or children falls to them as primary caregivers. These children tend to be aggressive, are prone to weight gain and sometimes have a destructive streak. So, you can imagine with very little help available and/or little understanding of this medical condition, the poor mother has to be resourceful, cheerful and super human.

Often, there is very little medical knowledge within the country itself. For example, Mathiga said that the only certified practitioner for autism disorders was in Nairobi, the capital city. Therefore, all queries from other parts of the country had to be directed to the capital city. This increases the cost of medical care. Further, in many places, there is not much understanding of autism, so doctors/medical personnel make the child undergo several medical tests and shock treatments before being able to diagnose them, if at all.

Through this painful medical journey, in most parts of the world, it is the mother who stands by her child, wanting the best for him/her and hoping to get the best treatment available. She is often sleep deprived as the children can be quite demanding of their time and attention. If she has a regular job, she needs to balance her child care with it and often opts for a less demanding workload even if she is highly qualified. Many mothers drop out of the workforce altogether as they may not necessarily have understanding managers or supervisors. As one mother on the panel said, she was always at a highly emotional state and would burst into tears at a drop of a hat.

The marital relationship also undergoes a lot of stress, leading to divorce. In 80 percent of the cases, as mentioned by the panel, the custody of the child goes to the mother. This further puts strain on her otherwise stressed out life.

Special education for the child is also a limited resource in many countries, including India and Kenya. It can be expensive if available, not including also needing special classes for speech therapy, physiotherapy and other needs the child may have. With increased medical and schooling costs, lack of alternative child care, double work lives and very little support from husband or family, it is no wonder that depression amongst mothers with autistic children is as high as 50 percent.

How then can we truly say that mothers with autistic children have a gender equal life? As Mathiga said during the panel, all she wants is for her son to be loved and accepted. And she will do all it takes to ensure he has a quality life even if it means she has think out of the box, deprive herself of opportunities and make a super human effort to be resilient.

Achieving gender equality in every sphere means having the entire community pitch in. We can give mothers with autistic children respite if we ensure the following:

• Fathers pitch in with the caregiving and take on an equal amount of responsibility financially, physically, mentally and emotionally.
• Extended family and society stops blaming the mother for their child’s autism. It is a genetic disorder and is not the mother’s “fault”.
• Employers need to be sensitive to parents with autistic children and provide childcare or assistance where required.
• Governments need to ensure that adequate educational and medical facilities are available for autistic children.
• Medical practitioners should be sensitive to parents and ensure they make every effort to diagnose the child correctly rather than adopt a trial and error method of prognosis.
• Overall, society must be accepting that every person is different and that we may not always have the same ability. Irrespective, we deserve to be respected for the people we are.