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.

This story was submitted in response to Share On Any Topic.

Comments 6

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Jill Langhus
Apr 05, 2018
Apr 05, 2018

Hi ElsaMarie. Thanks for sharing your interesting story. I totally agree that achieving gender equality for mothers with autistic children is ideal, but is unrealistic to achieve the goals listed? Don't get me wrong, it would be totally awesome if this could be achieved, but how would a society, or region go about achieving these goals; more education about autism, more acceptance? To me, that could take generations to achieve. I kept thinking the bigger issue is why autism is so high globally. Personally I think vaccinations are up there to blame. I know that it's controversial, but there have been studies linked to increases in autism related to certain vaccinations. I also understand that it's a fine line between combatting illnesses and letting people's immune systems develop and combat them naturally. So, my point is that if we knew more about prevention of autism, it seems like it would be a better strategy in the long-run. It would help these mothers be less stressed if they didn't have to care for autistic children, but rather healthier children.

Tamarack Verrall
Apr 05, 2018
Apr 05, 2018

Hi ElsaMarie,

It is a mystery as to why so many children are autistic, and why it seems to be dramatically increasing in so many places. Thanks for the update on discussions at the 62nd Commission on the Status of Women. The added misconceptions, and discrimination toward mothers are so important to have recognized, voiced and solutions found. "Achieving gender equality in every sphere means having the entire community pitch in". This is an inspiring goal, and I appreciate the road to a better community response that you outline. All too often mothers get blamed for everything that is difficult.

Two books written by Donna Williams, Nobody Nowhere, and Somebody Somewhere taught me a lot about this mysterious illness. She describes how she got through her extreme autism, and what works and what doesn't. These books were so full, I could not put them down. I have just read that she died of cancer last year. Her books live on. Temple Grandin also has a lot to offer. She also made it through to teach a lot from an inside perspective.

Best wishes with this important work,
Tam

Karen Quiñones-Axalan
Jun 01, 2018
Jun 01, 2018

Hello, Elsa Marie,

Autism Spectrum Disorder is a topic close to my heart. I know a lot of mothers with autistic children, and they are warriors.

The information you shared is so rich. I agree that looking for intervention is a challenge. It is a spectrum because when you see one child with autism, that is only one child with autism. The range is so wide that parents learn to accept that their child is not the next genius, but could be someone incapable of living on their own when he grows up. One autistic person can be so articulate with a topic of interest, another one is nonverbal for the rest of his/her life. For some, it is not just autism, but they also have ADHD, GDD, Sensory Processing Disorder, hypotonia, speech apraxia, and so on. But they are still within the spectrum.

I agree that the medication and therapies are costly. In the Philippines, only the moneyed people can afford those, while those who are poor struggle to seek solutions on their own.

One local actress wrote in her book that the expenses feels like sending a laywer and a doctor to school at the same time. There is no subsidy from the government here like in the US.

So the struggle is real. And I understand how it is even more difficult in Kenya and other African countries. It is just sad that it will take more years before we can come up to better, affordable solutions.

But I discovered something with the autistic people: they want to be accepted, and be loved just like the rest of us. Even when it seems they lack the eye contact or social interaction, they know when we reach out to connect with them. They feel when they are welcomed.

So whenever I meet an autistic child, I say hello. Or I reach out my hand to him/her. And I could see a smile.

The world is still looking for a cure, but as for now, LOVE and ACCEPTANCE can go a long way, not just for the children, but to the wounded mothers as well.

On the question of gender equality, that is sadly unequal for now. For just like raising typically developing children, the burden and blame are still placed on the mothers.

Ngala Nadege
Dec 28, 2018
Dec 28, 2018

Hello
Thanks for sharing your story.

Veronica Ngum Ndi
Feb 25
Feb 25

Dear ElsaMarie
Disability is a very complicated issue around the world.People always look for where to lay blames.But with personal experience as a person with disability,we need to be empowered to the extend that we don't look at what is behind us.Mothers with autistic children should be focus on empowering themselves and children to overcome stigma,be focus and move forward in life.
Love
Veronica
Cameroon

Lisbeth
Mar 17
Mar 17

Dear Elsmarie,
We got a saying in Ghana that says " the one who wears the shoes knows where its hurt". Disability is very complex and those who refused to see its complexity most at the time ignored its facts.
Especially, with autism. Sometime I wish I can understands them and revise issues but hmmm its out of my reach.
I think the only outstanding point is for society to accept this kind of disability, and adapt to it. Its only then that change can evolve quickly.
Thanks for sharing.