Is there gender equality for mothers with autistic children?

ElsaMarie DSilva
Posted April 5, 2018 from India

This story was first published on SheThePeopleTV

In late March, I was in New York City for the 62nd Commission on the Status of Women (CSW). My  Kenyan friend Jaki Mathaga, who is mother to a 12-year-old boy with Autism, and her friends, organised the first-ever panel there to highlight the correlation 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 which was a partnership between Arthur’s Dream Autism Trust (ADAT Foundation) named for her son and Straight from the Heart.

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 underdiagnosed 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 developmental 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?

Mathaga 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 extramarital 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 fall 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 superhuman. 

Often, there is very little medical knowledge within the country itself. For example, Mathaga 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 a 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 Mathaga 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 to think out of the box, deprive herself of opportunities and make a superhuman effort to be resilient.

Achieving gender equality in every sphere means having the entire community pitch in. So 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 stop 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.

If you have any thoughts or opinions, I would like to hear from you.

Comments 7

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Hannah B
Dec 06, 2018
Dec 06, 2018

Thank you for sharing this article!
I am saddened to learn that some mothers would be blamed for their children's condition. This is a difficult situation for all involved, and certainly must put strain on families! I look forward to learning more from you, and I hope you will post more stories on World Pulse.
Warm regards,
Hannah

Beth Lacey
Dec 10, 2018
Dec 10, 2018

Thank you for sharing. Clearly, more education is needed to understand this condition so that families can get the hep they need.
Beth

Bim Adegbite
Dec 14, 2018
Dec 14, 2018

Thanks for sharing. Indeed there is so much more to learn and there is a huge need for creating awareness. In even in enlightened societies women still experience levels of exclusion while being mothers to children with very special needs. The expectation is for them to be in "control" regardless of the challenges their children may be experiencing.
I joined a group for Mothers with Autisim on Facebook to get a better understanding and support those I may or may not know. Immersing ourselves in the lives of others is probably the best way to get understanding when we do not live their experiences on daily basis and makes us more empathic and less judgemental

Chinyere Okoh
Jan 01
Jan 01

Hello.

Thank you for sharing.

I was deeply moved by this articles.
Great insights and suggestions

Veronica Ngum Ndi
Feb 22
Feb 22

Dear Sister
The situation for persons with disabilities is similar everywhere.I am a woman with disability and can understand your stand point.Must at times in our community,mothers are blame for the impairments of their children.Then those children are treated like partial beings all their lives.Courage and keep up
Love
Veronica

Tumanjong Miranda
Mar 05
Mar 05

Thanks for sharing your story. I really felt moved and thank you for suggesting a way forward.
Courage sister!!!

Katalina
Mar 08
Mar 08

Great story, thanks for sharing!