50 Shades of Autism - Rebecca

I feel like I almost don't want to introduce Rebecca, because that will take away the mystery. So, I won't. I will instead talk about how I know her.

In short, I don't, really. But, as the virtual world works, I connected with someone, lets call her N, who knows Rebecca and shared her blog with me.

Rebecca is a magician with words. Her poems spark something in you. They are simple and elegant. I was hooked. And it brought out the poet in me.

I don't write a lot of poems, because I feel it doesn't come as naturally to me as prose, but every once in a while, a poet in me wakes up, churns out a few poems, and goes back to sleep for another half a decade.

This time, Rebecca's blog was the alarm clock. And so I seized the opportunity and wrote a few myself which then found its way to Rebecca. And she really liked them. So when I connected with N to interview her for 50 Shades of Autism, she asked me if I would like to connect with Rebecca too. And, here we are.

I officially got to know Rebecca only through this interview, but I will tell you what I told her after reading it. The more I get to know her, the more I want to know her.

This is one of my favorite things about this series, getting to know all these amazing, unique people who I may not have known otherwise.


So let's just get into it now.

M: Would you like to introduce yourself in your own words?

R: I am Rebecca. I live with my husband and three children, two of whom are neurodivergent. My son is autistic and my daughter has sensory processing disorder. 

I work for an NGO in Goa that supports children with developmental disabilities. Part of my work involves supporting families going through challenging times soon after their child gets a diagnosis. Another is facilitating parent-parent support and helping parents to feel empowered enough to support their children.

I think I’m a person who has always been and felt very different from others for a number of reasons. I was always referred to as a shy child. When I wasn’t among familiar people, I never spoke up until I was around ten years old. I loved to read and write ever since I was tiny, and I have published a children's storybook on colorism. I write poetry everyday. 

I also like all types of crafts and these activities take me down a rabbit hole that is hard for me to get out of. Most of the crafts that I find enjoyable involve repetition, such as crochet, cross stitch embroidery, making friendship bracelets, zentangle art, mehendi designs, spirograph art, etc,

I always had a creative streak and I’ve been blessed with an extremely vivid imagination. 

I find that I only began learning and discovering who I really am, after the age of 35. 

M: So interesting! 3 kids, oh my God!! I feel even 2 is too much. How do you manage with 3? How old are they?

R: I’ve always wanted to have many children. My children are now 18, 12 and 5 years old. I manage well, I think, because I have been blessed with such wonderful kids. I find motherhood easy also because of my oldest. He has always been a very mature and responsible sort of child. Most women struggle with their first born but I didn’t. 

He now helps me a lot with the younger kids and I think a big reason for it is because he sees my husband also play his part- both at work, and in the home too. 

I presume you’re referring to how I manage the home, work, kids, etc. I have always made sure that everyone does their part to manage the home and keep it running well. The kids all have their responsibilities. 

M: So, let's start at the very beginning. Can you tell me a bit more about your childhood?

R: My childhood was very unique and special. I’m pretty sure it was a very rare type of childhood. We grew up in a hotel, not a house, and I had a very big family, and I was especially privileged to have a very wonderful father who was a gem of a parent. 

I was pampered a lot, being the baby of the family. 

I also suffered from epilepsy as a child. Incidentally, it was photosensitive epilepsy that’s triggered by certain colors, patterns and light effects. 

The pattern on my school uniform striped shirt in combination with bright sunlight often triggered a horrible reaction in my brain and caused me to have seizures at school. But I was too embarrassed to talk to anyone about the effect that this combination had on me. In fact, I thought people wouldn't believe me or would think it was weird, or that I wanted to avoid school. It was decades later after I became an adult that I understood exactly how that combination was actually affecting my seizure disorder. After I left that school, I rarely had a seizure again. I didn’t understand epilepsy as a child, nor did I know that I had photosensitive epilepsy and today I wish someone had talked to me about it more. It may have helped me to open up. 

I was always feeling like I was very different from all my peers. 

M: Is it a millennial thing? Not asking for accommodations even when you medically need them? I wonder why we were not taught self advocacy as kids!! It genuinely baffles me!!

R: It was a different time that we grew up in. My parents were of the same age/ generation as my peer’s grandparents! I think that was the last generation that absolutely did not speak of certain ‘taboo’ things such as sexual health, disability, marriage and relationships, etc. I accept that part of my life as just the way things were. And I am grateful things aren’t like that anymore. 

M: When did you realize you might be autistic?

R: After my son’s and my daughter’s diagnosis, I realized that many of their ‘autistic traits’ and behaviors were things I have in common with them. I thought briefly about it and stored that thought away while I focussed on them.

However, a few years ago, it was a comment from a relative that made me really wake up! I realized I was always so different because I am probably autistic myself.

My relatives were visiting me and one of them happened to see my neurodivergent children for the first time. After observing both my neurodivergent kids, their mannerisms and their behavior, at one point, she commented something to the effect of: “They’re exactly like you used to be, which is so strange because everyone thought you were like that because of your Mamma’s death when you were a baby. But I guess it’s just your personality traits that they have got.”

That comment came as a shock, and it was strangely a welcome shock! It got me thinking a lot and made me think of the possibility that I am neurodivergent/ autistic myself. 

This comment from my family member further confirmed the fact that it was not just me who felt different from everyone else, but also made me understand that everyone around me saw me as odd or different from other children. Reflection on my specific traits and talking to other neurodivergent adults like me, further caused me to understand that I am autistic. 

M: I am so sorry to hear about your mom. Are you comfortable talking a little more about it?

R: Yes, I see my mom as a beautiful enigma. I have no memory of her at all and all I know of her is gorgeous photos of this absolutely perfect woman who still looked stunning after having ten children. We heard some lovely stories about her, and my father. She died of a heart attack when I was just a year old. 

I obviously was very young and never understood the loss. I don’t recall ever missing her because I never knew her. Like I said, I was always well taken care of by everyone else. 

But I would be lying if I said I never had moments where I sit and wonder what would be different had she still been alive. 

M: That’s both sad and beautiful. But, hold on!! You are telling me you have 9 siblings? Really? What was that like? It is very hard for me to imagine. I am very curious.

R: Yes, this is one of the things I meant when I said I had a unique childhood. I owe a lot of my childhood’s happiness to Dad and all my siblings who, at every stage in their lives and mine, added a lot of value to my childhood. I was often surrounded by all these loving people, but still, often left out of some experiences with the excuse that I was too small, or something was too dangerous for me. I was often considered too sickly, delicate or weak. Like the time we were at the seaside, where everyone else went on a boat joyride with fishermen in the sea, I “was too small” so I had stayed back with the boring elders in the house while all my siblings had an adventure. 

Another thing I clearly remember is that I often had to adjust to a new person taking care of me so often. Every few years, as the oldest sibling moved out to advance their higher education or career, the next sibling would take over. I missed them terribly and would hide and cry a lot when they traveled for a while or lived away from home,  but then again, each time they came back, I would be so shy and hide from them, and it would take me a few days to warm up to them again! 

I also owe a lot of my knowledge to my siblings. I remember knowing a lot more than my peers about a variety of things and I owe it to all my older siblings and their conversations that I always seemed to be listening to-as a child. 

My father was a very cheerful, witty and jolly person with loads of energy and positivity. He often drove our whole family to go out for pizzas every weekend, where he would be singing songs, and encouraging us all to join in, during the drive. Food was a huge part of our lives. We would walk up the road late at night to get ice creams from the ice cream shop nearby. So late that I would usually be in my pyjamas, half asleep and yet seated on my brother’s or my fathers shoulders during the walk up there.

I remember that my father would always buy us a storybook at the school book fair, and some ice creams after report card days at school. I remember sweet things like my sister cutting up my chicken nuggets into small pieces while everyone else had pizzas. I found pizzas to be a meal too messy and overwhelming to handle. I remember being forewarned by my sisters about which horrible teachers I had to watch out for when I was going to a new class at school! Often teachers would mix up my sisters and my names because we all look alike. I remember shopping trips with my sister where she would allow us younger ones a treat while she bought herself some make-up. I remember getting lovely gifts every time the suitcases opened when someone came home from studying or working abroad. 

Even today, I depend heavily on my siblings for advice during hard days. 

My big family, and especially my sisters are a special blessing I will always be grateful for. 

M: Wow, wow, wow!!! Your childhood sounds like one of those old time books. So dreamy and wholesome. And your dad sounds like such an angel! Can you tell me a bit more about your parents? This has nothing to do with autism really, but who cares? I am too intrigued to not ask. And what is the point of starting something like this and still not doing it my way 😉

R: My parents were madly affectionate towards each other and I hear from others too that they were incredible people who set a great example in the community as well, with a lot of light and positivity. 

As a child I remember looking through old files in cupboards to find photo albums and some old romantic cards and letters written back and forth between them. My parents were all about love. Though we were all sent to the best schools, they never laid much emphasis on school, academics or marks but a lot of their parenting was based on good morals, values and EQ. 

They lived by example. My father spoke little. Whatever he did speak was power packed with wisdom, trivia, or humor. When he spoke of anyone else, it was always highlighting some great qualities he saw in the person. On rainy nights, I remember my father making hot cups of tea to stop people on bicycles and offer them shelter until the rain ceased. 

He never imposed his beliefs on us in a meaningless way. His parenting was way ahead of his time. He valued all of us and our individuality and uniqueness and he lived by example. He respected all our major decisions too- when it came to marriages/ religion/ schooling for our own kids, etc. He never judged us for our choices, no matter how far removed they were, from his own ideas. 

He embraced change and took genuine interest in new ideas. We never ever got lectures from him. When he felt strongly about something which we didn't quite agree with, he would comment something powerful in a single sentence or phrase that got the message across beautifully but without pressure. He never told us what to do but encouraged us to find our own way even if it meant making mistakes several times over. Failure in anything was never something to be ridiculed or feared in our home

M: This is exactly what balanced parenting looks like. He really was ahead of his time. I wish I could go back in time and meet your parents, sip tea with them on a rainy day while they tell me all about their lives.

R: You and me both! I’d give anything for this experience. 

M: What has your self diagnosis meant to you?

R: Believe it or not I actually feel mostly positive things about being neurodivergent. The realization has made me much more comfortable in my own skin, and made me feel more at ease with myself. I sometimes feel I have a superpower. For instance, one of the unique things I experience is called lexical gustatory synesthesia. This is a condition to do with the senses being sort of warped or mixed up, where I experience tastes, and cravings based on sounds, voices and languages that I hear. All my life I had thought that this is something everyone experiences until my brother told me that it’s a specific condition with a name and not everyone has this experience. 

I believe that there are several special qualities that I possess as a result of being neurodivergent which I actually value and take pride in, and of course I do have negatives and painful experiences as well- such as being teased at school, or my seizure disorder- epilepsy

M:What impact did it have on you?

R: It has given me empathy and confidence in my ability to understand my childrens’ needs better. A comment from another neurodivergent adult who was observing me with my autistic son, made me reflect so much on this and made me feel gratitude for my own neurodivergence. I probably wouldn’t be as understanding as a mom if I wasn’t neurodivergent myself. 

And it has made me very reflective of my choices, decisions and behaviors. I feel very strongly about fairness in the world of neurodivergence and I try to do what I can in terms of advocacy, especially for autistic children. 

Many things that didn’t make sense before, are clearer to me now. 

M: I resonate with this so much. In my introduction I have shared that it feels like I am Clark Kent. I always knew I was a little bit different. But it was agonizing trying so hard to fit in and yet always standing out. But with this simple realization, I found the right crowd where I do fit in, and didn’t be too hard on myself with the crowds that I don’t. It's ok to be different.

M: You don’t have an official diagnosis yet. Can we talk about that? 

R: I wish I could say it doesn’t matter to me that I don’t have an official diagnosis yet.

I do believe I am autistic and yet having an official diagnosis matters to me. It does, because we have been so deeply conditioned to depend on validation from professionals, certificates and documentation, etc for a person’s experience to be considered legit. However, I have often been ridiculed and dismissed when I shared this self-diagnosis with others- even with professionals in the field. and it feels very painful and humiliating to be dismissed. 

I would like to get an official diagnosis because I would love to have someone with the qualifications and credibility to stand beside me and help me validate my experience. 

When I imagine that moment, the visual that comes to my mind is that of the boxer that wins a match and his hand is raised in victory by the referee! It may sound so silly but I imagine that when my “official” diagnosis comes, if ever, it will feel like a victory. 

M: I know the feeling. I have been dismissed too, whenever I have mentioned I am autistic. It gets to you, to the point that you doubt your own feelings. I have been told that I am just projecting because I am hanging around a lot of autistic people. I have always been told that I don’t look autistic, or I am too normal to be autistic 🤣. When it comes to official diagnosis, I want to share something with you. I want to go for one, but I am also afraid. What if I fail? I have been masking for so long now, that unmasking takes more effort than masking. What if I am not able to properly unmask during the assessment, and I fail? The other thing I worry about is, the understanding around autism is still at a very nascent stage, I feel. Especially in females and that too females with low support needs. I feel like I have found this superpower in my own self diagnosis, and I am scared of someone taking it away from me. Have you felt the same?

R: It took me three years to decide, and when I decided to have myself assessed by a professional, I went in knowing fully well the possibility that the results of the assessment could go either way. However, I am willing to risk that. 

The results of an assessment could very easily be wrong… but how I feel- can’t possibly be wrong. I own my thoughts and feelings completely. 

I know that it’s impossible for one person to properly and correctly judge whether a person is or isn’t autistic based on a scoring system followed during a one or two hour interaction with the person. 

My answer to your question: What if I fail? 

Whatever the result is, it won’t take away your (or my) reality nor will it change who we are!

I haven’t felt scared of someone taking away this reality from me. I think my childhood experiences have taught me in the harshest and loneliest way possible- that only I own my reality. 

M: What support needs or accommodations do you need in your day to day?

R: I require very minimal support or accommodations in my day to day life. 

I take medicines to prevent seizures. 

Languages are very hard for me and learning or speaking anything other than my primary language is extremely hard. Although I have tried for many many years, I have been unsuccessful at learning another language. This has often felt like a handicap. 

One of my children has a stim that is triggering for my own sensitivity, and it’s so interesting to note that his stim is a negative trigger for my neurodivergence! Funny what all we discover in a family full of neurodivergent people! 

I have only recently realized how much apps, alarms, time tables and schedules help me. While I enjoyed making lists all my life, I only just discovered how functional and useful that skill and interest can be for me. 

When it comes to sound sensitivity, there are experiences I used to avoid all my life because of the harsh effect it has on me. However, now as a parent, I am learning about simple tools and hacks one can use so that you needn’t avoid experiences just because they are hard for you. 

M: What is something you wish more people understood about autism?

R: I wish more people understood that autism is not a bad word and it’s not a deficit. There are an incredible number of skills and gifts that autistic people have to offer the world, if only we are given the chance! 

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?

R: In my work, I have often had to talk to parents in exactly this same situation, soon after they receive a diagnosis. I convey this very gradually and gently… but the gist of the message I usually convey- though not exactly in these words, is this:

-Autism is a special and very unique difference, not a deficit. 

-Autism definitely comes with unique gifts as well (I do not mean giftedness)

-Now that they have got a diagnosis, answers and solutions will be more easily accessible than they were before. 

M: I have read your blog. Your poems are truly magical. You sound like a diehard romantic. Is that correct?

R: Bang on! I am a diehard romantic at heart although it reflects more in my thoughts deep in my heart and soul- and my written words. 

I am not comfortable with giving a lot of physical affection in my personal life or with verbalizing romantic things like I love you’s… though I lap it up greedily when this sort of romantic affection is offered to me. I have struggled with reciprocating that quite a bit.

I’m good only on paper! 

M: How and when did you meet your husband? Tell us the story.

R: I met my husband while holidaying with college friends. He had this wide grin and polite ways about him that just stole my heart. Ever since then, we became inseparable and like any wild romance, all logic and reason flew out of the window. We forgot all else… We cared two hoots for tradition, families, responsibilities, money, or anything of the sort. All we wanted was to spend all our time with each other, and not much has changed in twenty years! 

We both come from extremely different backgrounds, even from different faiths. None of it mattered. We didn't care and we also did not face any opposition from either of our families. Not that it would’ve stopped us anyway! 

However, in hindsight, talking about these things and making more sensible decisions when it came to planning our life together-would have helped in the long run. 

M: I often tell people that the true test of a relationship is a kid. You want to dial it up a notch, make it a neurodivergent kid. 2 neurodivergent kids is just, match made in heaven level. Nothing can break a couple who have found their balance in parenting neurodivergent kids. What kind of impact did the kids’ diagnosis have on your marriage?

R: In our case, the diagnosis hit harder because we were also coping with the added burden of the pandemic at that time. And other failures of personal projects we were dealing with also added to the stress. Picture this: No source of income, dealing with the stress of financial losses, while also raising 3 children, two of who are neurodivergent, living with extended family of five- indefinitely, in a small room in a relative's home while your under-construction house is stalled due to lack of funds, no place for the kids to play, all while seeing no light at the end of the darkness

It was a very dark time and I honestly do not know how we got through it. But it’s behind us now. Thank goodness!

I definitely feel like these stressors take a toll on marriages and I envy the couples who can say- It only brought us closer together. I wish! 

But yes, it definitely feels good to think of what we’ve overcome and makes one feel you’re stronger now. 

M: That sounds like a lot! More credit to both of you for making it through it. 

M: Do you have any advice for other parents who might be struggling in their marriage because of the kid’s autism diagnosis?

R: I really don’t know. I can’t say we have mastered this. We do have our ugly fights and bad days and most of the time these involve our decisions around the kids because we both had such different upbringings. 

What works, I think, is that we each think about the other's feelings a lot and we both always try to make the other feel better after a fight. Yes, we have challenges but we are so uncomfortable with the after effects of any fight or arguments that we try hard to win the other back when they are upset! 

In my opinion, communication is the main thing. Because men and women are so different we each have to spell it out for the other in a language they understand! 

We cannot expect to be understood without explaining it. Nobody in your marriage is a mind reader-unless of course you married a mind-reader. In that case, lucky you!

M: That truly is the best advice I feel. Open, honest, vulnerable, hard conversations make relationships not only last, but also get stronger and better and truly flourish.

M: Any last thoughts you would like to leave our readers with?

R: The bottom line is, people are all different, but people are also similar in that we are all looking to be validated and accepted as we are. 

Get used to it and embrace it. 

Rapid fire-

• Favorite book: Jonathan Livingston Seagull by Richard Bach

• Favorite movie: Before Sunrise/ Before Sunset/ Boyhood incidentally I’ve just realized all are by the same director Richard Linklater

• Favorite singer: I don’t have one favorite singer but I like several songs from a very wide range of different genres and singers. Music is something I love and can move me to tears. 

• A moment of your life that makes you happy: 

-The moment I was told that I had a daughter. 

-Meeting most of my siblings for a reunion after many years. 

-Learning that I was pregnant, each time

• What is something people often get wrong about you;

 People often think I’m rude or snobbish but I avoid talking to people unnecessarily. I don’t see any point in making small talk or in greeting people good morning/ good afternoon, etc. So I do see how I come across as rude. 

• A core childhood memory: 

-Playing on the swing that hung from the mango tree in my garden. 

-My sister and me- making lime juice or some questionable sweet/ drinks/ snack in our kitchen while all the adults were asleep in the afternoons.

-Sitting at the window, staring at people on the street and wondering about their lives. 

-Reading storybooks while munching on tamarind

• What is something you are struggling with right now: 

Navigating work relationships with colleagues. Time management. 

• What is a recent accomplishment you are proud of: 

I have always struggled with playing ‘hostess’. It is something I was never good at, and makes me anxious and nervous. I feel awkward at parties and cannot make chit-chat. However, my child asked me to host a birthday party for her friends. She turned 12 and for the first time ever she wanted a party for friends. I was determined to give her what she wanted. Few days ago, I hosted a small birthday party for my daughter's and my son’s friends - on a beach, where they all had a wonderful time together. One of the most terrifying experiences of my adult life. But it was a success and I am very proud that I pulled it off and nothing went wrong!

For most other people, this may seem odd, and it's such a simple thing that many people do every day… but for me-it’s huge!

Thank you so much Rebecca for giving me your precious time, and for answering all of my questions. I had so much fun curating this piece with you. And I have thoroughly enjoyed getting to know you.