Hello there!!
It has been a while. Well, a lot of things were going on on the personal front, and this blog and series being just hobbies had to pay the price and take the back seat. And that's what hobbies are for, right? That's the whole fun. You can put them on the back burner, or totally take them off the stove, even out of the kitchen if you need to. But then when there's space again, you can just bring it back on. And so, here I am.
Today's interview is very special. They all are, but this one is just an extra bit special, the reason being, Sudhanshu is the first autistic mom with twin autistic sons that I have had the pleasure to speak to. And because she is a seasoned parent, there was a lot I could learn from her. I cannot put it in words how incredibly fortunate I feel I have been to find this community, and to find people who have "been there, done that" and find reassurance in their life experiences.
Sudhanshu's story is a true testament of autistic and ND strengths. And I hope if there is only one thing that you take away from this wonderful piece, let it be this - You have got this!
Whoever you are, whatever your strengths and challenges are, whatever it is that you are struggling with right now, I understand it is hard, but, you have got this. You can do hard things. You have done hard things before, and you will continue to do them in future.
This piece will also give you so much new vocabulary to express things you have always known and felt, but didn't have the right words for.
Side note - If you haven't read the work of Edith Eger, I would highly recommend reading The Choice and The Gift.
Without further ado, lets get into it.
M: Would you like to introduce yourself in your own words?
S: I am a creative, deep thinking, determined, free spirited, hardworking, honest, intuitive, inquisitive, meticulous, open minded, sensitive and strong willed Autistic woman.
I am a proud mother to two wonderful Autistic young adults, friend to an incredible Autistic chosen family member and teacher/ mentor to many neurofabulous children and young adults.
M: Wow, I love the adjectives you have used for yourself, and I am definitely stealing “neurofabulous”.
M: So, let's start at the very beginning. Can you tell me a bit more about your childhood?
S: Until recently, I hadn’t spent much time reflecting upon the past, but lately I have been thinking a lot about my younger years up to recent days.
As I look back at my life, my earliest memories are twirling and covering myself in my mamma’s saree ‘pallu’. It was my safe space. I was a very shy and introverted child.
As my eyes are sensitive to bright light and I had high myopia from an early age, l remember squinting my eyes (it helped me see more clearly), all the time. I was also a weak child, low on immunity and used to fall sick often. I had a caring and supportive family. They loved me and protected me.
As my eyes are sensitive to bright light and I had high myopia from an early age, l remember squinting my eyes (it helped me see more clearly), all the time. I was also a weak child, low on immunity and used to fall sick often. I had a caring and supportive family. They loved me and protected me.
When I was growing up, over time I started noticing things that made me realize that I was different from other kids. I was painfully aware of my inability to fit in and talk smoothly- both things that others did easily.
As we are “girly” in our interests, the subtleties of approach to our interests are missed.
Boys and men are more likely to be socialized to express their behaviours openly, whereas we are less likely to externalize and more likely to be anxious; inherently we are more socially aware so we are often better at masking.
Hence, we are often MISDIAGNOSED or MISS THE DIAGNOSIS.
It does not mean that we have a different experience of being Autistic per se… It means that we experience a different prejudice- that is a result of having different social experiences that may be driven by gendered socialization and due to practices that solely rely on stereotypical ‘male’ presentation to identify autism.
There is increasing awareness that there are different ways to be Autistic aside from stereotypical male presentation. It is more helpful to consider externalized presentation (as one that is more recognisable to majority of people- where the Autistic person stims, is Non-Speaking, show distressed behaviour) and internalized presentation (as one in which their Autistic traits are internalised and masked and so less visible).
Autistic people who express their Autistic self in an internal way may not be identified as Autistic until and because, they have reached breaking point.
M: If I am not mistaken, you recently celebrated your 30th wedding anniversary, right? Can you talk a little more about your relationship with your husband? Is he neurotypical? Did you face any challenges in your initial years of parenting to find your rhythm? How does being autistic reflect in your relationship?
S: I believe whole-heartedly that my husband is an undiagnosed Autistic person (I have been thinking so for several years now…his part of the family keeps counting the similarities between him and our children, which makes this belief even stronger).
We have been married for 30 years. Ours was an arranged marriage.
In the initial years of marriage, adjusting and adapting to the new relationships, a new place and new routines was extremely challenging. My inability to make small talk and my top level directness and honesty was not particularly liked by the family. I masked heavily.
In these testing times, it was easier to bond with my husband, who did not care about most of the things the other family members were expecting from me. However, we often found ourselves misreading each other's mood or offending each other. Over the years, we have been aware that we need to reflect on our own traits, needs, fixations and habits. There is more trust and mutual understanding, there is willingness to compromise and adapt…
For times, when we are overwhelmed or need to unwind, we have customized individual areas where we spend time away from each other. We communicate important stuff with each other only through texts/ emails. We give each other lots of space and follow our own interests.
My husband is a good man and a good father. For a large chunk of their childhood, he was away working in Trivandrum while we were in Delhi. We would only meet for a few days in the year. We badly needed the money and he was the sole breadwinner. He has always supported and trusted me on the decisions I have taken for kids.
For the past few years, we have all been together. He consistently connects with both our kids based on their interests.
As the two of us interpret the world in different ways, both of us have very different parenting styles. We respond to kid’s situations differently so we try to find common ground.
Our family life is busy and chaotic.. changes to everyday routines can be really difficult for all of us. We constantly juggle to try and keep some balance to get through the day and avoid a crisis. To an outsider we may seem as a very varied family, but there is no written rule around family. As long as we all are comfortable and happy, it is ok!
M: Can we talk about your kids? What are they like?
S: Bringing home two tiny twin babies was just the beginning of a remarkable, slightly overwhelming and a very surprising adventure.
As they grew older, the older twin turned into a very happy baby, busy doing his little things- listening to songs and rhymes and reading my and his dad’s books. He would spend a lot of time taking apart and fixing things. The younger of the twins, was the cutest baby with the sweetest smile, but then he would break into unexplainable episodes of screaming. He resisted being lifted and the only way to comfort him was swaying him in a cradle or moving the pram.
So, while the older one was Einstein at work, the younger one was Newton- throwing down things from 2 floors up, testing the laws of gravitation.
They turned 27 this year!
They both are very different individuals- they have varied needs, preferences, interests, strengths and challenges.
The older one, remotely works for a software company. The younger one works with me at home.
S: I have taught myself many skills and have had uncountable intense interests and hobbies.
Children and the adults around me noticed my strangeness, my inability to fit in.
While children routinely insulted or made fun of this difference (in addition to my bulky glasses, dark skin, and perennially runny nose), adults were always concerned and pitied me, “Oh, you poor thing” is what they all said.
While children routinely insulted or made fun of this difference (in addition to my bulky glasses, dark skin, and perennially runny nose), adults were always concerned and pitied me, “Oh, you poor thing” is what they all said.
At home, my mamma worked extensively on my organizational skills and my papa taught me public speaking. I played with neighborhood kids- all either younger or older than me. We had a kids drama company where I did a lot of plays and skits. I absolutely loved drama- I wrote scripts where the character I played was someone who wasn’t naïve like me, was popular and had a lot of friends.
Though I received a lot of appreciation for my acting skills in the neighborhood, this did not translate into me getting a chance in school plays where the roles were reserved for ‘best’ students.
I also remember, quite vividly, how to my family’s uneasiness, I would ‘hide’ myself, at times in the ‘barsati’ of the flat where we lived, sometimes in a tent made from my mamma’s dupattas and once also behind a sofa in Periyar National park (this was extreme as they thought an elephant had taken me away to the jungle).
As I approached my early teens, I began to find school increasingly difficult.
Social rules became a BIG problem. It was always harder to get along with girls- they seemed scary, they were duplicitous, gossipy and had strange fixations about stuff I didn’t care about. I would always wait for a new academic session, for new kids to come, so that I would be friends with them. There was a lot of torture from teachers too- I always had to work harder to remember the stuff I had learned — and there was so much to learn. My teachers did not like it when I asked them too many questions.
There would be spurts of talent- on one day I would solve complex math problems faster than anyone else, at another time I would play hockey and score hat trick goals and on another day I would win a quiz competition for the school. But this would be intermittent, and their impact on me and my teachers’ confidence was short lived.
As I grew older, I forced myself to make eye contact, mimic the social behaviour of other girls and learn scripts to use in social situations. I pretended to get jokes, and laughed at the jokes that were directed at me. To fit in, I repeatedly landed myself in some very tricky and dangerous situations and was taken advantage of on several occasions.
I would return home and berate myself for whatever happened at school…
Did I say something inappropriate?
I was not smart enough.
I was not nice enough.
Were people laughing at me?
A decade of struggling- being misunderstood, taunted and laughed at, made me see these as personal failings. I always felt that I must be fundamentally bad- when EVERYONE tells you that, you think you ARE faulty.
The underlying feelings of my childhood were of SHAME.
Though I had very supportive parents and a brother, these feelings compounded over the years leading to an extremely negative sense of self.
M: When and how did you get your autism diagnosis?
S: I learned that I am Autistic on 5 August 2018, at the grand old age of 48!
It was the most profound and perhaps the best day of my entire life; of course AFTER the birth of my twins.
My boys were diagnosed Autistic on their 3rd Birthday. This was the first time I heard the word Autism. I was unable to find the support I desperately needed after their diagnosis, so I moved to Delhi NCR. To help my sons, I started to learn about Autism. I read all possible material that I could get my hands on. I underwent training to become an educator. With the learnings from the training that I gained by working with my children, I was also able to support many other families and Autistic people that I worked with. I have been in this field for around 20 years and have been working with Autistic people across ages. I have been speaking professionally and have been doing training for professionals and workshops for parents.
As my children grew, and I continued to learn about Autism, I began to see and accept the many similarities between me and my sons’ thoughts and behaviors, strengths and challenges. They had fascinations with particular textures, smells, sights, sounds, music, places, foods – traits I recognised in myself. I sometimes wondered if I was Autistic but thought this couldn’t be possible.
I was diagnosed 20 years after being in this profession!
This sounds a bit crazy, that I could be in the field for this length of time AND have Autistic family members and YET not realize that this applied to me!!
This just really only goes to show how recent the understanding of Autistic women is. It took so long purely because of all of the people that I was comparing myself to, all of the instructions that I read through my training around autism-all presented to me a profile of a person that I didn't really fit into.
As for many other Autistic girls and women, for me too, the recognition of autism came at a crisis point. It came in menopausal transitioning, which had completely derailed my masking and coping skills. This was also the time I was going through my second major burnout…I was finding it challenging to carry out the diverse and stressful role and responsibilities of the Department Head… all this made it extremely difficult for me to maintain the facade of being neurotypical. I went in for a professional diagnosis.
M:What impact did it have on you?
S: I remember every second of my final day of assessment — as though it was yesterday.
Having gone through more than the first half of my life being thought of as, and feeling like, the odd misfit who didn’t belong, diagnosis came as a MASSIVE relief!!
Of course, there was a lot to process.
Ever since, I have been reassessing and re-evaluating my life in the context of this new identity.
Often people ask me, “well, why bother being diagnosed in your forties, you've got that far, what's the point ?”
I think THERE IS A POINT, suddenly everything made sense...it helped me understand a lot of things about myself … it explains why a social situation is so exhausting for me, it explains the unsuccessful relationships and the multiple social difficulties that I've had. It means that I wasn't wrong, I was just different. Before diagnosis I spent a lot of time comparing myself to other people and pushing myself too hard. I now know that I’m not a faulty non-autistic, I’m a perfectly formed Autistic person.
Knowing I’m Autistic means accepting that the things I find hard are maybe going to be hard, but it also means that the things I find easy or joyful will stay with me.
I need to be better at working within my limits. I need to feel safe to leave a social gathering when I need to. I need to remember that I need to recover and rest.
Knowing I’m Autistic has boosted my esteem and reduced my anxiety. I feel empowered. It hasn’t made all my challenges go away, but it certainly changed my attitude about them. I have started to accept the parts of me that I was forced to hide by society. I can embrace my gifts and strengths that I was made to feel were problems, and stop self-sabotaging so much. I am trying to ACCEPT myself and trying to BE myself. I am trying to have some kind of sense of self-identity. I am trying not to be what everybody else wants me to be.
I am also learning to let go of the frustration and resentment toward those who have mistreated me.
I am learning to celebrate myself.
Diagnosis is the first step along the path to self-acceptance. I still have a long way to go. This is a work in progress.
M: What support needs or accommodations do you need in your day to day?
S: The conventional support needs and accommodations tend to be framed in terms of visible disabilities, e.g., people understand that a person in a wheelchair needs free access to places.
But when you have an invisible disability like autism, you may have very different needs that may not be tangible or quantifiable.
Being diagnosed Autistic at the age of 48 gave me a new understanding of myself that demanded I change how I live my life.
Some of my support needs, in no particular order of listing, are as under:
S: We (Autistic girls and women) often get an alphabet soup of diagnoses, including borderline personality disorder, eating disorders, bipolar disorder, schizoaffective disorder, schizophrenia, post-traumatic stress disorder, sensory processing disorder, intermittent explosive disorder and adult ADHD, as well as the varieties of anxiety, agoraphobia, panic disorder and depression, serially and together.
Though I received a lot of appreciation for my acting skills in the neighborhood, this did not translate into me getting a chance in school plays where the roles were reserved for ‘best’ students.
I also remember, quite vividly, how to my family’s uneasiness, I would ‘hide’ myself, at times in the ‘barsati’ of the flat where we lived, sometimes in a tent made from my mamma’s dupattas and once also behind a sofa in Periyar National park (this was extreme as they thought an elephant had taken me away to the jungle).
As I approached my early teens, I began to find school increasingly difficult.
Social rules became a BIG problem. It was always harder to get along with girls- they seemed scary, they were duplicitous, gossipy and had strange fixations about stuff I didn’t care about. I would always wait for a new academic session, for new kids to come, so that I would be friends with them. There was a lot of torture from teachers too- I always had to work harder to remember the stuff I had learned — and there was so much to learn. My teachers did not like it when I asked them too many questions.
There would be spurts of talent- on one day I would solve complex math problems faster than anyone else, at another time I would play hockey and score hat trick goals and on another day I would win a quiz competition for the school. But this would be intermittent, and their impact on me and my teachers’ confidence was short lived.
As I grew older, I forced myself to make eye contact, mimic the social behaviour of other girls and learn scripts to use in social situations. I pretended to get jokes, and laughed at the jokes that were directed at me. To fit in, I repeatedly landed myself in some very tricky and dangerous situations and was taken advantage of on several occasions.
I would return home and berate myself for whatever happened at school…
Did I say something inappropriate?
I was not smart enough.
I was not nice enough.
Were people laughing at me?
A decade of struggling- being misunderstood, taunted and laughed at, made me see these as personal failings. I always felt that I must be fundamentally bad- when EVERYONE tells you that, you think you ARE faulty.
The underlying feelings of my childhood were of SHAME.
Though I had very supportive parents and a brother, these feelings compounded over the years leading to an extremely negative sense of self.
M: When and how did you get your autism diagnosis?
S: I learned that I am Autistic on 5 August 2018, at the grand old age of 48!
It was the most profound and perhaps the best day of my entire life; of course AFTER the birth of my twins.
My boys were diagnosed Autistic on their 3rd Birthday. This was the first time I heard the word Autism. I was unable to find the support I desperately needed after their diagnosis, so I moved to Delhi NCR. To help my sons, I started to learn about Autism. I read all possible material that I could get my hands on. I underwent training to become an educator. With the learnings from the training that I gained by working with my children, I was also able to support many other families and Autistic people that I worked with. I have been in this field for around 20 years and have been working with Autistic people across ages. I have been speaking professionally and have been doing training for professionals and workshops for parents.
As my children grew, and I continued to learn about Autism, I began to see and accept the many similarities between me and my sons’ thoughts and behaviors, strengths and challenges. They had fascinations with particular textures, smells, sights, sounds, music, places, foods – traits I recognised in myself. I sometimes wondered if I was Autistic but thought this couldn’t be possible.
I was diagnosed 20 years after being in this profession!
This sounds a bit crazy, that I could be in the field for this length of time AND have Autistic family members and YET not realize that this applied to me!!
This just really only goes to show how recent the understanding of Autistic women is. It took so long purely because of all of the people that I was comparing myself to, all of the instructions that I read through my training around autism-all presented to me a profile of a person that I didn't really fit into.
As for many other Autistic girls and women, for me too, the recognition of autism came at a crisis point. It came in menopausal transitioning, which had completely derailed my masking and coping skills. This was also the time I was going through my second major burnout…I was finding it challenging to carry out the diverse and stressful role and responsibilities of the Department Head… all this made it extremely difficult for me to maintain the facade of being neurotypical. I went in for a professional diagnosis.
M:What impact did it have on you?
S: I remember every second of my final day of assessment — as though it was yesterday.
Having gone through more than the first half of my life being thought of as, and feeling like, the odd misfit who didn’t belong, diagnosis came as a MASSIVE relief!!
Of course, there was a lot to process.
Ever since, I have been reassessing and re-evaluating my life in the context of this new identity.
Often people ask me, “well, why bother being diagnosed in your forties, you've got that far, what's the point ?”
I think THERE IS A POINT, suddenly everything made sense...it helped me understand a lot of things about myself … it explains why a social situation is so exhausting for me, it explains the unsuccessful relationships and the multiple social difficulties that I've had. It means that I wasn't wrong, I was just different. Before diagnosis I spent a lot of time comparing myself to other people and pushing myself too hard. I now know that I’m not a faulty non-autistic, I’m a perfectly formed Autistic person.
Knowing I’m Autistic means accepting that the things I find hard are maybe going to be hard, but it also means that the things I find easy or joyful will stay with me.
I need to be better at working within my limits. I need to feel safe to leave a social gathering when I need to. I need to remember that I need to recover and rest.
Knowing I’m Autistic has boosted my esteem and reduced my anxiety. I feel empowered. It hasn’t made all my challenges go away, but it certainly changed my attitude about them. I have started to accept the parts of me that I was forced to hide by society. I can embrace my gifts and strengths that I was made to feel were problems, and stop self-sabotaging so much. I am trying to ACCEPT myself and trying to BE myself. I am trying to have some kind of sense of self-identity. I am trying not to be what everybody else wants me to be.
I am also learning to let go of the frustration and resentment toward those who have mistreated me.
I am learning to celebrate myself.
Diagnosis is the first step along the path to self-acceptance. I still have a long way to go. This is a work in progress.
M: What support needs or accommodations do you need in your day to day?
S: The conventional support needs and accommodations tend to be framed in terms of visible disabilities, e.g., people understand that a person in a wheelchair needs free access to places.
But when you have an invisible disability like autism, you may have very different needs that may not be tangible or quantifiable.
Being diagnosed Autistic at the age of 48 gave me a new understanding of myself that demanded I change how I live my life.
Some of my support needs, in no particular order of listing, are as under:
- Clear and unambiguous instructions about anything anyone wants me to do.
- Information ahead of time for any events and changes.
- Reminders/ alarms on mobile or by people, in times when I hyperfocus and forget to carry out other important activities.
- For all presentations, workshops, talks etc., I always research, over-prepare and get stressed. I suffer nervous stomach cramps, experience panic attacks or mini-meltdowns. Doing fewer presentations and workshops and pacing them apart usually helps.
- I don’t process conversations immediately and therefore prefer asynchronous modes of communication like texts and emails.
- I struggle with recognising faces. In large public gatherings, it helps to have a supportive person by my side, to tell who is who.
- A comfort ‘bag’ with me when I am out, especially including a steel spoon and glass, antacid and water.
- Public transport and crowded public places are difficult as I find them overwhelming, disorientating and very tiring. I preferred to drive earlier, I prefer to be driven around now.
- I can’t bear tight or restrictive clothes, I want loose comfortable clothing and footwear.
- Too many smells, sounds, and sights bother me. Having a clean, organized, sensory neutral environment works best.
- To-do-lists of tasks, coloured pens, planners, calendar and sticky notes.
- A ‘do not disturb’ board is a MUST.
- Assistance in areas such as travel, navigating healthcare systems (especially taking an appointment with medical professionals and conveying them about the symptoms and the gravity of my illness), anything money related, bank work etc.
- Be around kind, non-judgemental, non-toxic people as my mental energy is finite and I need to account for it carefully or else I would end up overloaded and burnt out.
- A co- regulator during meltdowns. When there is an upsurge of emotions within me, meltdown helps me re-regulate my emotions and help me think clearly.
S: We (Autistic girls and women) often get an alphabet soup of diagnoses, including borderline personality disorder, eating disorders, bipolar disorder, schizoaffective disorder, schizophrenia, post-traumatic stress disorder, sensory processing disorder, intermittent explosive disorder and adult ADHD, as well as the varieties of anxiety, agoraphobia, panic disorder and depression, serially and together.
As we are “girly” in our interests, the subtleties of approach to our interests are missed.
Boys and men are more likely to be socialized to express their behaviours openly, whereas we are less likely to externalize and more likely to be anxious; inherently we are more socially aware so we are often better at masking.
Hence, we are often MISDIAGNOSED or MISS THE DIAGNOSIS.
It does not mean that we have a different experience of being Autistic per se… It means that we experience a different prejudice- that is a result of having different social experiences that may be driven by gendered socialization and due to practices that solely rely on stereotypical ‘male’ presentation to identify autism.
There is increasing awareness that there are different ways to be Autistic aside from stereotypical male presentation. It is more helpful to consider externalized presentation (as one that is more recognisable to majority of people- where the Autistic person stims, is Non-Speaking, show distressed behaviour) and internalized presentation (as one in which their Autistic traits are internalised and masked and so less visible).
Autistic people who express their Autistic self in an internal way may not be identified as Autistic until and because, they have reached breaking point.
M: If I am not mistaken, you recently celebrated your 30th wedding anniversary, right? Can you talk a little more about your relationship with your husband? Is he neurotypical? Did you face any challenges in your initial years of parenting to find your rhythm? How does being autistic reflect in your relationship?
S: I believe whole-heartedly that my husband is an undiagnosed Autistic person (I have been thinking so for several years now…his part of the family keeps counting the similarities between him and our children, which makes this belief even stronger).
We have been married for 30 years. Ours was an arranged marriage.
In the initial years of marriage, adjusting and adapting to the new relationships, a new place and new routines was extremely challenging. My inability to make small talk and my top level directness and honesty was not particularly liked by the family. I masked heavily.
In these testing times, it was easier to bond with my husband, who did not care about most of the things the other family members were expecting from me. However, we often found ourselves misreading each other's mood or offending each other. Over the years, we have been aware that we need to reflect on our own traits, needs, fixations and habits. There is more trust and mutual understanding, there is willingness to compromise and adapt…
For times, when we are overwhelmed or need to unwind, we have customized individual areas where we spend time away from each other. We communicate important stuff with each other only through texts/ emails. We give each other lots of space and follow our own interests.
My husband is a good man and a good father. For a large chunk of their childhood, he was away working in Trivandrum while we were in Delhi. We would only meet for a few days in the year. We badly needed the money and he was the sole breadwinner. He has always supported and trusted me on the decisions I have taken for kids.
For the past few years, we have all been together. He consistently connects with both our kids based on their interests.
As the two of us interpret the world in different ways, both of us have very different parenting styles. We respond to kid’s situations differently so we try to find common ground.
Our family life is busy and chaotic.. changes to everyday routines can be really difficult for all of us. We constantly juggle to try and keep some balance to get through the day and avoid a crisis. To an outsider we may seem as a very varied family, but there is no written rule around family. As long as we all are comfortable and happy, it is ok!
M: Can we talk about your kids? What are they like?
S: Bringing home two tiny twin babies was just the beginning of a remarkable, slightly overwhelming and a very surprising adventure.
As they grew older, the older twin turned into a very happy baby, busy doing his little things- listening to songs and rhymes and reading my and his dad’s books. He would spend a lot of time taking apart and fixing things. The younger of the twins, was the cutest baby with the sweetest smile, but then he would break into unexplainable episodes of screaming. He resisted being lifted and the only way to comfort him was swaying him in a cradle or moving the pram.
So, while the older one was Einstein at work, the younger one was Newton- throwing down things from 2 floors up, testing the laws of gravitation.
They turned 27 this year!
They both are very different individuals- they have varied needs, preferences, interests, strengths and challenges.
The older one, remotely works for a software company. The younger one works with me at home.
All these years, I have had a lot of things to celebrate! I feel blessed!!
M: I recently saw this reel on instagram where an autistic content creator’s mom, who also got diagnosed at 48, talks about all her struggles as a parent that could have easily been explained with her diagnosis. But she didn’t have it. So she lived in shame for a lot of years for not being the kind of mother she expected herself to be. I really related to that. Because I feel I myself am not the mother I thought I would be. I could never have imagined how overstimulated I get with touch and how it impacts me. I could have never imagined how much down time I would need. And I am trying to be easier on myself, but I still often battle feeling “not good enough” for my kids. I would like to know your perspective on this. You are the first mom with twin autistic sons that I am getting a chance to speak to, who thankfully has been on the gig for a long time now. I guess, in you, I am somehow trying to find clues of what my own life might look like in a decade or two. So, loaded question, I want to know what motherhood has been like for you, and any advice that you could give to me and the other readers with young neurofabulous kids, specifically around motherhood.
S: Motherhood for me, was without a doubt challenging, but at the same time an amazing experience.
I think, there is no perfect, ‘good enough mother’ who is able to raise their kids making all the right decisions. All mothers have their own approaches that they have developed over the years. I am a mother, like all others . My differing neurology simply adds different aspects to my parenting style, it does not make my parenting less competent. I love, play, teach, and take care of my kids with my unique Autistic way of being.
Being Autistic makes it easy for me to accept and value our differences. I can instinctively figure out what my kids want or need and help them. I am able to provide predictability and consistency to my children’s lives. I mean what I say and say what I mean, therefore, it has been easier for kids to follow through with the rules, boundaries and expectations.
As our struggles with communication, social nuances and ways of thinking are common, I am able to pass on what works- my learned skills and experiences.
Though at times, I have often been judged as a cold parent, I have objectively been able to help my children in situations that have been quite grave. With my logical brain, I have been able to put aside my emotions and do what is required at that time to get them help.
When the younger twin was finding it sensorially challenging to be at a school and later at a vocational setup, I began doing stuff with him at home. I do not feel pressured to follow social conventions, I follow my own ideas and live in the here-and-now. I pass this on to my children. I encourage them to follow their dreams.
I intuitively understand their hyperfocus and interests, meltdowns and shutdowns.
Motherhood did seem hard when my kids were small, messy and smelly. The noise and chaos by two little boys, felt certainly much more than multiplied by two. Fulfilling some expected social roles around them has been particularly taxing, like talking to other parents in the school or hobby class premises, birthday parties etc. Communicating with professionals and advocating for them in school was tough. Not connecting with others in the ways I would have ideally liked to, led to distress and after analysis of what can be done differently.
There were times when being with my kids and performing household responsibilities left me exhausted. I had no time to access my own recharge/recovery mechanisms. My already disturbed sleep cycle was further disrupted
But in hindsight, I would say these difficult moments with my kids, made me patient and stronger.
As they are growing up, my children are learning to understand my challenges- I tell them when they need to lower their volume or how many times they can touch me and they try to accommodate my sensory overloads.
I, like many other Autistic people, discovered my own Autistic identity through the diagnosis of my children. This brought me clarity, an understanding of my own unique differences. My children are the first two humans who loved me instantly, completely and freely for who I was. I share a deep bond with my children.
I experience motherhood as an extremely joyful, rewarding and enjoyable journey.
Advice:
Parents of a neurofabulous kid, you cannot pour from an empty cup. You cannot support others if you don’t look after you. Self care is not selfish, it makes you a better person. So do whatever takes your fancy- read a book, watch a show, pot a plant, sit in the sun, walk barefoot on the grass.
Pay close attention to your mental/ emotional wellbeing. Bear in mind that every emotion and experience has a right to exist. Take no shame in crying, screaming, and being angry. Find a safe person with whom you vent with, and say how you feel without worrying about how you will be perceived.
Don’t beat yourself over mistakes that you make. Try to not do everything… or to not do everything perfectly. If we don’t make mistakes then there aren’t any teachable moments.
Parents of neurofabulous kid, take the help you are getting and ask for the support you need. You don’t have to do everything on your own, build a “Team You” with those who will support you, back you up, and look after you.
Being parents of a neurofabulous kid, give up on conventional parenting approaches- they just DON’T work. Instead have clear, simple rules and limits.
It is crucial for our children to understand our thought processes as parents. So engaging in a discussion with them, where we can demonstrate and explain the WHYs behind our rules, expectations and boundaries as their parents goes a very long way. At the same time, we need to listen to them, try and see things from their point of view.
It is important for us to treat our neurofabulous kids like the intelligent, insightful, conscious and extremely aware beings that they are; regardless of their age or size.
M: What are some of your special interests?
M: I recently saw this reel on instagram where an autistic content creator’s mom, who also got diagnosed at 48, talks about all her struggles as a parent that could have easily been explained with her diagnosis. But she didn’t have it. So she lived in shame for a lot of years for not being the kind of mother she expected herself to be. I really related to that. Because I feel I myself am not the mother I thought I would be. I could never have imagined how overstimulated I get with touch and how it impacts me. I could have never imagined how much down time I would need. And I am trying to be easier on myself, but I still often battle feeling “not good enough” for my kids. I would like to know your perspective on this. You are the first mom with twin autistic sons that I am getting a chance to speak to, who thankfully has been on the gig for a long time now. I guess, in you, I am somehow trying to find clues of what my own life might look like in a decade or two. So, loaded question, I want to know what motherhood has been like for you, and any advice that you could give to me and the other readers with young neurofabulous kids, specifically around motherhood.
S: Motherhood for me, was without a doubt challenging, but at the same time an amazing experience.
I think, there is no perfect, ‘good enough mother’ who is able to raise their kids making all the right decisions. All mothers have their own approaches that they have developed over the years. I am a mother, like all others . My differing neurology simply adds different aspects to my parenting style, it does not make my parenting less competent. I love, play, teach, and take care of my kids with my unique Autistic way of being.
Being Autistic makes it easy for me to accept and value our differences. I can instinctively figure out what my kids want or need and help them. I am able to provide predictability and consistency to my children’s lives. I mean what I say and say what I mean, therefore, it has been easier for kids to follow through with the rules, boundaries and expectations.
As our struggles with communication, social nuances and ways of thinking are common, I am able to pass on what works- my learned skills and experiences.
Though at times, I have often been judged as a cold parent, I have objectively been able to help my children in situations that have been quite grave. With my logical brain, I have been able to put aside my emotions and do what is required at that time to get them help.
When the younger twin was finding it sensorially challenging to be at a school and later at a vocational setup, I began doing stuff with him at home. I do not feel pressured to follow social conventions, I follow my own ideas and live in the here-and-now. I pass this on to my children. I encourage them to follow their dreams.
I intuitively understand their hyperfocus and interests, meltdowns and shutdowns.
Motherhood did seem hard when my kids were small, messy and smelly. The noise and chaos by two little boys, felt certainly much more than multiplied by two. Fulfilling some expected social roles around them has been particularly taxing, like talking to other parents in the school or hobby class premises, birthday parties etc. Communicating with professionals and advocating for them in school was tough. Not connecting with others in the ways I would have ideally liked to, led to distress and after analysis of what can be done differently.
There were times when being with my kids and performing household responsibilities left me exhausted. I had no time to access my own recharge/recovery mechanisms. My already disturbed sleep cycle was further disrupted
But in hindsight, I would say these difficult moments with my kids, made me patient and stronger.
As they are growing up, my children are learning to understand my challenges- I tell them when they need to lower their volume or how many times they can touch me and they try to accommodate my sensory overloads.
I, like many other Autistic people, discovered my own Autistic identity through the diagnosis of my children. This brought me clarity, an understanding of my own unique differences. My children are the first two humans who loved me instantly, completely and freely for who I was. I share a deep bond with my children.
I experience motherhood as an extremely joyful, rewarding and enjoyable journey.
Advice:
Parents of a neurofabulous kid, you cannot pour from an empty cup. You cannot support others if you don’t look after you. Self care is not selfish, it makes you a better person. So do whatever takes your fancy- read a book, watch a show, pot a plant, sit in the sun, walk barefoot on the grass.
Pay close attention to your mental/ emotional wellbeing. Bear in mind that every emotion and experience has a right to exist. Take no shame in crying, screaming, and being angry. Find a safe person with whom you vent with, and say how you feel without worrying about how you will be perceived.
Don’t beat yourself over mistakes that you make. Try to not do everything… or to not do everything perfectly. If we don’t make mistakes then there aren’t any teachable moments.
Parents of neurofabulous kid, take the help you are getting and ask for the support you need. You don’t have to do everything on your own, build a “Team You” with those who will support you, back you up, and look after you.
Being parents of a neurofabulous kid, give up on conventional parenting approaches- they just DON’T work. Instead have clear, simple rules and limits.
It is crucial for our children to understand our thought processes as parents. So engaging in a discussion with them, where we can demonstrate and explain the WHYs behind our rules, expectations and boundaries as their parents goes a very long way. At the same time, we need to listen to them, try and see things from their point of view.
It is important for us to treat our neurofabulous kids like the intelligent, insightful, conscious and extremely aware beings that they are; regardless of their age or size.
M: What are some of your special interests?
S: I have taught myself many skills and have had uncountable intense interests and hobbies.
Drama is of course my first love- I still love to write plays but no acting now.
Movies have been a constant leisure pursuit. They have always offered an escape from reality, allowing me to completely immerse myself in the captivating narratives and visually stimulating experiences.
I have a lot of interest in music- I can listen to ALL Indian genres of music. Music has such a deep impact on me- it makes or breaks my mood instantly!
I am passionate about cooking, baking and eating!
I am fond of art and craft skills.
I am intrigued about World war 1 and 2 and Hitler (particularly about how he rose to power only on the basis of his oratorical skills and use of propaganda)
AND I LOVE reading children’s books.
For the last couple of years, reading and learning about autism has been my fascination.
In the recent past, I have been taking keen interest in gardening and decorating, designing and maintaining my home.
M: What is something you wish more people understood about autism?
S: Autism is not a disorder. Autistic people may seem to be ‘disordered’ on the Planet of Typicality just as neurotypicals may seem to be ‘disordered’ on the Planet of Neurodivergence.
It is a difference…Autistic people have their own set of strengths and challenges just like everyone else.
Autistic people are disabled in neurotypically defined and favoured world.
Adults are Autistic too. Autistic kids grow into autistic adults. Just because we do not show out our autism, we mask, doesn't mean we've 'grown out of it,' as many people think. It just means we have been forced to hide part of ourselves to fit in, and oftentimes, it comes at a huge cost. We are Autistic our whole lives, and that is just how we are!
Autism is not a disease. Autism is an integral part of who we are. Autistic people have a different nervous system. Doctors can’t stop Autistic people from being Autistic. Autistic people don’t ‘get better’. Autistic people are okay being Autistic. Most Autistic people don’t want a cure for their autism or do not want to overcome their autism.
Many Autistic individuals seek social connections. We may have different ways of socializing and may need clear communication and understanding from others. While some Autistic individuals may find it challenging to interpret social cues, this does not mean we lack empathy or emotional understanding. Many of us are highly empathetic and can form deep emotional connections. Our empathy is unique, it is more genuine and less influenced by social conventions.
M: If you were to run into a very dear friend today, who is just coming back from the hospital after receiving an autism diagnosis for their child, what is it that you would like to tell them?
S: Accept your child, accept that the way your child experiences the world is uniquely Autistic. Love him exactly for who they are, with all their strengths and challenges. Do not allow others to put limits on your child’s potential to achieve, do not allow anyone to take away opportunities because they don’t think your child is capable and do not allow others to tell you to ‘modify’ the behaviours that they may not understand. Do not try to fit them into other people’s mold of misconceptions and prejudices. Presume competence and believe in them. Support their interest and their sensitivities. Remember our job as a parent began before we knew our child was Autistic, so love them unconditionally and ALWAYS be there for them.
Seek out for the Autistic community. Autistic adults are here and we have been where your child is. We know what it is like to live in a world that is hostile to our neurology. Learn about autism and Autistic experiences from the ‘real experts’- the ones with a lived experience of autism.
M: Any last thoughts you would like to leave our readers with?
S: Autistic people need to know that we are Autistic. I have met many parents who do not want to tell their Autistic people because they do not want them to know that they are different. Remember, WE ALREADY KNOW… We have a sense that there is something going on when we are visiting multiple professionals. We are able to pick on when we are treated differently in school. We realize when we see our peers coping effortlessly, with the same demands, that are causing us such a problem.
As you can see, I have used such wonderful words to introduce myself. Believe me, this has only been after my diagnosis. Before that, the labels I gave myself were- stupid, good-for-nothing, weird, crazy and lazy.
Autistic people are entitled to accurate information about themselves.
It is information about our brain, our body, about our lives, and we are the rightful owners of this information. Knowing about ourselves will empower us to stand up for ourselves, make the right choices in our lives and avoid difficult situations. Self-Advocacy is impossible without disclosure.
Also, one comes across many stories about Autistic lives discussing the difficulties and struggles in day to day living. From an outsider perspective, from someone who is not themselves Autistic, autism is viewed and discussed through a lens of suffering. Autistic life isn’t entirely about struggling and suffering; of course there are challenges but there is TRUE JOY AND VIBRANCE in being autistic. A lot of Autistic people are genuinely happy with their quirks and differences, their talents and pure wonderfulness.
Rapid fire-
Movies have been a constant leisure pursuit. They have always offered an escape from reality, allowing me to completely immerse myself in the captivating narratives and visually stimulating experiences.
I have a lot of interest in music- I can listen to ALL Indian genres of music. Music has such a deep impact on me- it makes or breaks my mood instantly!
I am passionate about cooking, baking and eating!
I am fond of art and craft skills.
I am intrigued about World war 1 and 2 and Hitler (particularly about how he rose to power only on the basis of his oratorical skills and use of propaganda)
AND I LOVE reading children’s books.
For the last couple of years, reading and learning about autism has been my fascination.
In the recent past, I have been taking keen interest in gardening and decorating, designing and maintaining my home.
M: What is something you wish more people understood about autism?
S: Autism is not a disorder. Autistic people may seem to be ‘disordered’ on the Planet of Typicality just as neurotypicals may seem to be ‘disordered’ on the Planet of Neurodivergence.
It is a difference…Autistic people have their own set of strengths and challenges just like everyone else.
Autistic people are disabled in neurotypically defined and favoured world.
Adults are Autistic too. Autistic kids grow into autistic adults. Just because we do not show out our autism, we mask, doesn't mean we've 'grown out of it,' as many people think. It just means we have been forced to hide part of ourselves to fit in, and oftentimes, it comes at a huge cost. We are Autistic our whole lives, and that is just how we are!
Autism is not a disease. Autism is an integral part of who we are. Autistic people have a different nervous system. Doctors can’t stop Autistic people from being Autistic. Autistic people don’t ‘get better’. Autistic people are okay being Autistic. Most Autistic people don’t want a cure for their autism or do not want to overcome their autism.
Many Autistic individuals seek social connections. We may have different ways of socializing and may need clear communication and understanding from others. While some Autistic individuals may find it challenging to interpret social cues, this does not mean we lack empathy or emotional understanding. Many of us are highly empathetic and can form deep emotional connections. Our empathy is unique, it is more genuine and less influenced by social conventions.
M: If you were to run into a very dear friend today, who is just coming back from the hospital after receiving an autism diagnosis for their child, what is it that you would like to tell them?
S: Accept your child, accept that the way your child experiences the world is uniquely Autistic. Love him exactly for who they are, with all their strengths and challenges. Do not allow others to put limits on your child’s potential to achieve, do not allow anyone to take away opportunities because they don’t think your child is capable and do not allow others to tell you to ‘modify’ the behaviours that they may not understand. Do not try to fit them into other people’s mold of misconceptions and prejudices. Presume competence and believe in them. Support their interest and their sensitivities. Remember our job as a parent began before we knew our child was Autistic, so love them unconditionally and ALWAYS be there for them.
Seek out for the Autistic community. Autistic adults are here and we have been where your child is. We know what it is like to live in a world that is hostile to our neurology. Learn about autism and Autistic experiences from the ‘real experts’- the ones with a lived experience of autism.
M: Any last thoughts you would like to leave our readers with?
S: Autistic people need to know that we are Autistic. I have met many parents who do not want to tell their Autistic people because they do not want them to know that they are different. Remember, WE ALREADY KNOW… We have a sense that there is something going on when we are visiting multiple professionals. We are able to pick on when we are treated differently in school. We realize when we see our peers coping effortlessly, with the same demands, that are causing us such a problem.
As you can see, I have used such wonderful words to introduce myself. Believe me, this has only been after my diagnosis. Before that, the labels I gave myself were- stupid, good-for-nothing, weird, crazy and lazy.
Autistic people are entitled to accurate information about themselves.
It is information about our brain, our body, about our lives, and we are the rightful owners of this information. Knowing about ourselves will empower us to stand up for ourselves, make the right choices in our lives and avoid difficult situations. Self-Advocacy is impossible without disclosure.
Also, one comes across many stories about Autistic lives discussing the difficulties and struggles in day to day living. From an outsider perspective, from someone who is not themselves Autistic, autism is viewed and discussed through a lens of suffering. Autistic life isn’t entirely about struggling and suffering; of course there are challenges but there is TRUE JOY AND VIBRANCE in being autistic. A lot of Autistic people are genuinely happy with their quirks and differences, their talents and pure wonderfulness.
Rapid fire-
- A book you would like to recommend - Oh, the places you’ll go!! By Dr Suess, I Like You by Sandol Stoddard Warburg, The Boy, the mole, the fox and the horse by Charlie Mackesy.
- A movie you would like to recommend- There are so many: Schindler list, Anand, Deewar, Maqbool, Chakde India, Swades, Farhan Aktar’s Don, 12th Fail
- A singer/band/album you would like to recommend- Lata Mangeshkar, Asha Bhonsle, RD Burman, Bappi Lahiri, AR Rahman, Ghulam Ali…the list is endless.
- A moment of your life that makes you happy- Starting our own services- Powered By Autistics
- What is something people often get wrong about you- That I am snooty, arrogant and rude
- A core childhood memory- My papa had to travel a lot for his job and we accompanied him on these travels. We visited different cities all across India. It is through these travels that I learnt a great deal about the country, picked up about local cuisines and got fascinated with trains, forts and bridges.
- What is something you are struggling with right now- Managing my time, balancing between personal and professional life and getting back to exercise
- What is a recent accomplishment you are proud of- Giving lengthy workshops requiring several hours of preparation. There were times when I was exhausted but I did not give up and RESTARTED!
Thank you so much Sudhanshu for your patience and time.
Hi Sudhanshu so wonderfully written. Loved every bit.
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