Beyond Science- The Thoughts of an AUTISM Mum!
My friend S got a diagnosis a couple of months back and she behaved casually. We sat and had tea together while she told me about the concluding appointment which made the diagnosis official. I could see her eyes looked tired, her smile had faded, and she looked much older. I asked her if she would like to share her thoughts and if I could help. She said “No. I am all good. It was expected”
Another mum T came for a playdate. She is expecting her second child and as she looked at our children “not playing together” she became very quiet. My good friend G, mother of a teen called me and asked “Is it ever going to be easy? Do you think I am a bad mum?” A mum of twins, one typical and another autistic cried for a good 20 minutes. One thing they all asked “Why me?”
I always smile because they are asking this to an autism mum. Reading this script so far, you would think our lives are miserable and hopeless. But no! Let me tell you about what autism mums are thinking.
My friend S was worried alright, but she was happy her son was going to a specialist school where he would get all the help he needs. My Friend T was worried about having a second autistic child, but she knew she could deal with the second one better. She had taught herself well and was happy her first one would have a sibling.
My good friend G is not an autism mum. She is a mum of a teen. That explains it all! The mum of twins cried because the autistic one said “Mum” first. Our lives are not ruled by a diagnosis. It is ruled by the love of a child whom we willingly work for. We are not thinking about it all the time or worrying all the time. We want everyone to know that we are not different. We want the same for our children as the rest. But we do have a tougher battle. We struggle to make our child know how much they are loved and that they can trust us to make them succeed.
What do I think?
Mothers all over the world always worry! They worry about their one day old, one month old, one year old and even 50-year-old. What do they think and what do they worry about? THAT, NO ONE WILL EVER KNOW! It gets more interesting to know what mothers of an autistic child think?
When a child is conceived, a dream is born and a whole lot of expectations build inside the hopeful heart of a mother. Along with that develops a world filled with emotions and fears. She impatiently waits for her baby’s first smile, the first sit, the first crawl, the first stand, the first walk and mostly the first word “Mum”. This leads to the next stage of expectations and with every milestone the list keeps growing along with the happiness.
But what happens to an autism mum?
She is unaware that what is happening in the neighbors’ house with a child of the same age is going to be a distant dream. All the expectations and wait are going to be much longer, and nothing will get executed as planned. There are endless nights and worries and the fear only keeps growing as the days pass. Close ones try to help initially but slowly move away and call occasionally. So, this becomes the journey of the child with the mother. Just like the captain of a ship or a soldier in a war hold their post no matter how difficult it may become, so does a mother. She stands there even if she sees less hope or help because that is her post.
As an autism mum myself and haven spoken to so many others, I have realized that we are the same as other mothers, yet our journey is so different or rather difficult.
The difference is lack of empathy. The difference is awareness and acceptance. The thinking that unless it is their own problem it does not matter, makes all the DIFFERENCE!
When you know your child is bullying another child and you do not stop them, you are encouraging that behaviour. It does not show any sign of courage or help your child in becoming more independent. It only teaches them that bad is power and they build on that. A child is still just a child. They learn by looking at how we adults behave. When you are judging an autism parent struggling in the park or ignoring them, you are indirectly teaching your child that they don’t need to care. You teach that it is not their business to offer support, but to make the struggling parent feel isolated and inadequate.
My child was 4 ½ years when he was first judged by another mother. He was overwhelmed by the number of people in the soft play and refused to get in. Without any knowledge or introduction, one mother came to me and said “Put him in the naughty corner. Some children learn discipline the hard way”. I politely moved away and tried to reason with my son who was struggling to overcome his sensory overload. Shortly after that, I could see the same mum grouped with two others, staring, and passing comments.
Such situations make me wonder, who needs the help? Is it my autistic child or those women who judged a 4 ½ year old?
I thought over this and decided that slowly but certainly, I shall create awareness. My journey has been difficult, but I have learned a lot in this process. The first thing I learned was that we need to ask help if we need help. People cannot read our minds! Secondly, it is up to us to break the stigma. If autism parents do not include other people than the struggle remains within us. People will continue to hold the same mindset because they have not been educated. It is ok to be AUTISTIC! If children get the right society around them, it will never be a problem for them to function.
There are also wonderful people around us who are willing to learn and guide. I met a 70-year-old in a children’s center almost 2 years back. She came and watched me with my little one. She was fascinated by the way I was involved. While the other mums were sipping tea and catching up on their weekend stories, I was completing the craft. She asked me if I wanted to have some tea. I thanked her and said I will need to leave early as my son is autistic and would be upset if I don’t get back early. She pulled a chair and sat beside me. She asked “How are you coping? I said I was fine and now I am well informed so dealing much better than the past years. She asked me to wait and got a book on autism. She said “Take this if it could be of any help to you. I have always tried to have sessions for Special needs children but couldn’t. I have read a couple of books and try to raise awareness. But as you know, not many sit and listen to a 70-year-old”. I smiled and thanked her again.
This time I started thinking!
It is true that not many listen or like reading. How can I make it interesting or catch people’s attention? I started sharing videos on WhatsApp and posting pictures in an Autism Awareness T-Shirt. I got a good deal in amazon with a small percentage going to the National Autistic Society. I started fundraising through henna stalls and speaking to people about autism when they came for a henna tattoo. I have written several articles including research publications in the past but realize that awareness can be done only by creating interest first.
I do the Orwell Challenge with a few volunteers that agree to walk with me for autism. This helps to raise funds and creates awareness as well. The funds raised are put for sessions with mothers and children to share important information and provides a place for mums to come and share their heartaches as well as achievements. I do talks and share them on Instagram, Facebook and Youtube so that people listen if not read.
I know there has been success because even non-autism mothers attend my sessions and show willingness and excitement to run the henna stalls. They walk and participate in various awareness programmes with me.
We also participated in the 11TH Global Food and PITA Festival, 2023. We made a dish looking like a spectrum. We made 7 dishes with 7 rainbow colours and the theme Autism. Autism affects every child differently and everyone has their own set of challenges and needs. If you know 1 autistic child, you know just one autistic child. They are all different like the colours of the rainbow. Beautifully Different!
We bagged the 2nd Prize for our creativity and won a cash prize which was again put into the cause. So, the idea is to create awareness in whichever way possible. When the condition is not typical, why make the strategies typical. Think outside the box and make it interesting for everyone.
Finally, to all my mums who have a child with autism and the ones who do not, thank you for being a part of this journey. It is your efforts and hard work that is making awareness and acceptance possible.
It is your thought that counts!
About the Author
Minakshi Koch is a multi-talented mother who stands at the intersection of scientific research, corporate leadership, and social advocacy. Currently serving as the Vice CEO of Ishkama Ltd, IGC, BHI Homes Ltd, and KIA Beauty Ltd, she brings a diverse and vibrant perspective to her roles. Holding an MPhil degree in Biochemistry and a Postgraduate Diploma in Clinical Research and Clinical Data Management, Minakshi has a significant body of work in academic publishing with numerous contributions to national and international journals.
Earlier in her career, Minakshi devoted six years to researching metabolic diseases, particularly focusing on food allergies and autism for her MPhil research. After taking a break, her personal journey took an unexpected turn when she discovered her own child was autistic, sparking a renewed interest in the field. She became an impassioned advocate for autism awareness and inclusivity, weaving her personal experiences with her professional background to create impactful narratives.
Minakshi’s personal journey with autism has transformed her, fostering an open-minded perspective and unconditional love. She’s become an influential voice in advocating for understanding and appreciating neurodiversity. By reaching out to parents and reading extensively on the subject, Minakshi is dedicated to sharing the insights she has gained about raising a neurodiverse child.
Her experiences have inspired her role as the Chief Editor of Ishkama Global Change Magazine, an international digital magazine where she continues to enlighten and support others. This platform enables Minakshi to share her wealth of knowledge with a global audience, helping to shift perceptions and encouraging acceptance and understanding of autism.
Despite the challenges that come with raising a neurodiverse child, Minakshi always puts her child’s welfare and happiness first. Her mantra for other parents in a similar situation is to be patient, take care of themselves, and ignore any societal judgments. Minakshi is a firm believer in the strength and resilience of parents raising neurodiverse children, and her advocacy continues to inspire and encourage those facing similar journeys.
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