It is striking me now that we are on the third interview, and so far I have only interviewed autistic women. Well, I wish I could say it was by design. But, I am glad that I am getting to talk to these very interesting women. I realized it only very recently that the reason why I never asked myself if I could be autistic till about 29 years is because I had only seen autism through the male lens. Autisic boys and autistic adult men (mostly in movies and TV shows). When it came to women, the only thing that even seemed slightly relatable was bipolar. But trying to make sense of my "quirks" from the bipolar lens is sort of like trying to explain the colour orange, but the only other colour you know is red. So you say, its bright like red, but maybe not as bright. It has a bit more of something else, but what I can't put my finger on.
But now that I finally have access to adult autistic women, I don't need to explain orange. They just get it. And I too, finally, get it. This is the power of representation. Our eyes are pointing outwards, so it is always easier to look at something familiar on someone else, and make sense of it, than to just close our eyes and imagine it for ourselves. I know this is a very small, tiny part of the internet, but I hope that it finds its way to young girls, who feel different, but struggle to explain it. I hope when they read these interviews with these amazing women, they are finally able to see and put a name to that difference that they have felt all their lives.
With that, let's start the next interview in the series, this time with the brilliant Natasha. If I had to define Natasha in a word, I would say she is a creator. Creation brings her more joy than anything else. And she is so so good at it. Natasha is the kind of person who makes everything looks so easy, especially parenting. But when you actually try to do it yourself, that's when you realize how hard it is. For example, this interview. She is just so effortlessly funny, kind, honest and thoughtful. It really does come to her very naturally. I hope you savour it as much as I did.
So, without further ado, lets dive in.
M: Would you like to introduce yourself in your own words?
N: Hello! I'm Natasha, I'm 37 years old and have recently found out that I'm autistic after my 3 sons received their autism diagnosis. When not spending time with my kids I like to read, watch movies based on books and keep up with at least 4 hobbies at once.M: Can you tell us a bit about your childhood. What was it like growing up?
N: I am the eldest of 3 children to NRI parents. I was raised in Abu Dhabi, UAE and completed my school years there, after which I came to India for higher studies.
M: What was school like for you? Did you enjoy it or find it challenging, or both?
N: School was an interesting experience. I had favorite subjects and not so favorite ones like lots of other children. English and the sciences were my favorites and I would do a lot of extra reading at home trying to find out more on a certain topic I'd just learnt at school. This was easy enough with the number of books we had in the house. My mom being a teacher had access to all sorts of books for reference purposes which I then was able to get my hands on every week. Add to that my school library card and I was a very contented child. Reading was and still is my first love. I was never much of a people person even back then.
M: How did you meet your husband? I am a die hard romantic and a sucker for a good love story 🙂
N: I'm afraid I'm going to disappoint you here! Being extremely shy in my teen years and preferring books to people meant that social situations weren't my forte. When I reached a certain age my parents decided it was time for me to marry and not having a stronger argument as to why I shouldn't, I went along with it. Being the eldest comes with setting an example and I have been relied on to make this happen. My mum arranged the match and things went from there.
M: Haha! Mine is an arranged marriage too. No disappointment. There is a unique charm to get to know a person and choose to love them after deciding to marry them 😉
M: When did you realize you might be autistic?
N: When my eldest was diagnosed. I found myself answering(in my head) in the affirmative to most of the questions asked which would lead to a positive diagnosis but upon sharing my concerns, I was assured that it was normal to feel this way and that I couldn't possibly be autistic. This process repeated itself with my other 2 sons at their assessments. It was like experiencing deja vu but being told you are mistaken.
M: What has your self diagnosis meant to you?
N: It means putting a name to that sense of feeling different from others, it gives me an explanation for why I could change my personality- seemingly at will - depending on who I was talking to so that I would seem more like them. Wanting to please people all the time. This self diagnosis has validated those moments whereas before I wouldn't know what was different about me. It was just a feeling that always stayed with me. Until now.
M: You don’t have an official diagnosis yet. Can we talk about it?
N: I'd love to get an official diagnosis but there's so much going on with the kids right now, and they're always going to be my first priority. So I've put the process for an official diagnosis for myself on hold for now. Maybe in a few years when things aren't so busy with the kids, I'll be able to do that for myself. As an aside, don't you think it's funny that parents look at a diagnosis as the worst possible news about your child - while as adults we're chasing that diagnosis for ourselves like the ultimate dream to be our true selves?
M: Haha! Yeah!! I see the irony.
M: Do you ever tell people in your life that you are autistic as well? How do they react?
N: Except for a few, no. Not really. Also, I've only just arrived at the realization myself, and I've still got a long way to go to come to terms with it. There's a lot of self doubt and analysis of my past going on in my head as I try to make sense of it all. I don't think people who've known me all my life would react well or even believe me. And that's going to be a hard thing I'll have to deal with, but not now. It can wait! 😄
M: What does an ordinary day in your life look like?
N: Busy! There's always something happening every hour of the day and I check the clock more times than I'd like to. Kids are 10,7 and 5 and keeping up with school work and projects means that's a job all on its own. I don't send them to a tuition teacher as I feel their way of learning is very different from other kids their age and wouldn't be properly supported. I work part time as a pharmacist at the family pharmaceutical business. I studied to get this degree after I got married to better support the family business, and I already have a degree in architectural engineering.
M: That’s so amazing. Pharmacy and architecture are so far apart. The fact that you could shift gears so seamlessly shows your resilience.
M: Can we talk a little more about your kids? What are they like?
N: I think my kids are amazing - I'd initially thought of myself as a girl mum so was initially sad that I didn't have any girls but I don't miss that feeling now that I've adjusted to being a boys mum, lol. My eldest, David - is an extremely affectionate and friendly soul and yearns for connection. He is the kind of child who will strike up a conversation with a complete stranger, which is amazing to me. I generally avoid people as a rule. My second child Jordan is non verbal but is an example of probably why they coined the term- the walls have ears. He's the one I identify the most with, since he looks almost exactly like me when I was that age, shares my tastes in food and is artistically inclined. My youngest - Matthew - wasn't planned but arrived anyway. He's a voracious reader unlike his brothers and will justify the purchase of the hundreds of books that were impulse bought by me since before they were born. In this way he's similar to who I was as a child but with his own wonderful personality layered on. It's so amazing to me to see this - little parts of myself in my children.
M: They all sound so unique and delightful. Though all 3 of them are autistic, all of them seem to have different support needs. How do you manage that? Do you feel you have to be a different parent to each of them? For context, I have a few friends with one autistic and one neurotypical child, and often feel they have to be different parents to each kid.
N: I have never thought about it in this way, but I suppose I am the same with all three of them. I do change my way of handling the situation depending on the child though. For my youngest who needs the least support, it's easy to begin to expect too much from him since he's hyperlexic and very advanced academically. So while I encourage him in these areas, I am careful not to push too hard and remind myself that he's just 5 years old and that that age comes with its own level of emotional maturity. It's important to let children just be kids sometimes, it contributes to a well balanced happy child. One thing I practice with my kids(that I know isn't a very popular opinion) is giving respect to gain respect. I don't assume because I'm an adult that their points of view are less valid, and will take time to have a discussion if there are things we don't agree on. Kids are people too and deserve the right to autonomy wherever possible.
M: Do they like school? Do they go to mainstream school?
N: Yes, they do! Maybe my loner middle child might not agree quite so enthusiastically, but it is still preferable to being at home with a limited routine. I've had trouble with schools because I've been forthright about their autism right from the start. Thankfully after about a year of searching and praying and getting rejected I finally found a lovely mainstream school that accepted my boys. With their diagnosis. It is far from where we stay but that's a small price to pay compared to all the wonderful benefits going to school will bring them, the main one being social in nature. Since it is an inclusive school, the kids are used to seeing(from a young age) kids with disabilities, they have grown up together and have developed empathy in the best way possible. It was one of the first things that struck me a month in. The idea of inclusion is to help both the child with special needs and a typical child, the first is able to flourish in such a welcoming, supportive environment while the other develops into a caring, empathetic individual who will be a credit to society. It's an idea that hopefully more schools can get on board with and make necessary provisions for. It will benefit everyone, not just kids with special needs like everyone currently thinks.
M: What was it like when you got your first kid’s diagnosis?
N: I felt concussed. And I know the feeling for real after slipping on wet tile and crashing down headfirst when i was little. The ringing in my ears was as deafening as it was then, when the psychologist spoke the word autism and I had to ask her to say it again. And then sat in numb disbelief as she explained very professionally what autism was. It was mixed with a strange feeling of realization as well, all those moments when you realize something is different that you can't put your finger on but others assure you is not a thing. I remember my husband and I not speaking much on the ride home, each of us lost in our own thoughts and trying to fast forward mentally to see what the years ahead would look like now. I hadn't heard of autism before and it had been mentioned to us in a tone of dread almost, with the added statement that it was a lifelong condition. All I knew at that moment was that my child was still the same child when we got out of that room, and I was going to do all I could to find out more about this word autism. We've come so far since then!
M: What was it when you got it for the other kids?
N: I was honestly surprised when my second child Jordan was diagnosed as he couldn't have been more different from David in personality. He was an extremely easy baby to feed, put to sleep, play with, anything really - you name it and I had no trouble with this little one compared to my elder boy. As he grew up, the only thing that was missing was his speech, which others assured me was because he was a boy. Delayed speech and all that. But I was convinced when I had to take him for an admission interview to a play school and he refused to look at the teacher when she repeatedly called his name. She told me that they'd call me to let me know - which is another way of saying that he didn't make the cut, and we left. I took him for an assessment soon after and received a positive diagnosis of autism. I'd Heard a hundred times that 2 individuals with autism can be completely different but I'd never internalized that fact as much as when Jordan received his diagnosis. I understood then. For Matthew, my youngest, I just scheduled an appointment after he turned 3 and took him in just on principle. Everyone at home must've thought (and probably said) that I was insane but I wasn't making assumptions again like I did with Jordan. Matthew was the closest to a typically developing child, but what did I know? I've never raised a typical child before 😁. Oh and he received a positive diagnosis as well.
M: Haha! The other day I ran into a neurotypical child, and they were speaking in sentences. And I felt so confused. I was like, do you mean what you are saying? I don’t have to decipher any hidden meaning? This feels so weird. At that moment I realized that my “normal” now is autistic kids.
M: If you had to summarize your journey with autism, both yours and your children’s, how would you do that?
N: I had a rough start with autism to be sure but I've been blessed to have met the right people at the right time who've been able to give me so much support and the true story of what autism really is. Through my children I've learnt that I'm neurodivergent as well and that's brought so much peace and forgiveness to what once used to be a very turbulent relationship with myself. It has helped me be a better parent to my kids and the fact that looking through an autism lens (so to speak) has helped me understand my children easier and faster doesn't hurt either! I think being neurodivergent is a wonderful thing, most of my interests and passions are fueled by it and they've become synonymous with autism for me now. I wouldn't be able to give it up. There are good and bad days for sure, but who doesn't have those? It's just a matter of perspective and the help you receive along your journey.
M: I think all parents of autistic kids go through this journey of “Autism is a tragedy” to “Autism has so many challenges, but there are some tiny upsides too”, all the way to “Autism is a blessing”. Is it fair to say that you started from “autism is a tragedy”? And now you are at the “autism is a blessing” phase?
N: Yes - I did think it was a tragedy but only because I didn't know what autism was back then. I only knew what I was told and with the solemn air of someone delivering a death sentence. And I don't blame that person's demeanour either, they obviously themselves believed autism was a tragedy and how do you impart bad news cheerfully?
I did my own research online while walking through the seven stages of grief, and while the internet is full of miracle cures and other traps targeting vulnerable parents, it is also the place you can find autistics who share so eloquently their experiences of living with autism. And they are the ones that are worth listening to.
And talking to others, meeting the right people and hearing others' experiences work tremendously to lift you out of that place if you've been stuck in one way of thinking. And so, seven years later, here I am today.
M: What would you say to a parent who is currently stuck in the “Autism is a tragedy” phase?
N: I would encourage them to join a support group. It's easy when on your own to get lost in your head and start to feel sorry for yourself. I've already been adding mums I know who don't have this kind of support and encouraging them to read messages on the groups and observe before they can have a chance to ask their own questions. Sometimes, knowing you aren't alone is everything.
M: I know from a personal experience that this journey is full of highest highs and lowest lows. What have been some of your highest highs and lowest lows?
N: I'm not sure I'll be able to answer this completely as I still keep things close to the chest. It's part of what I found out to be what masking is, putting on a front to be able to blend in better. Which i apparently do so i well i didn't know i was doing it. And thought that was what everybody did. Sorry I'm diverging again.
I think my highest highs were when I would complete a project to my satisfaction - like a pencil sketch for example. I didn't much care for others to see or comment on it because it didn't matter either way, but I was always amazed that I had done it, weird as it may sound. It made me feel like I had a secret power that I wasn't quite sure how to control. Even now when I look through some of my previous work, my initial reaction is - I can't believe I did that. No way. 🤯
The fact that I know now that it's autism with some ADHD in there that's responsible, is pretty incredible.
And of course on the flip side, it also had the power to bring me down completely. I didn't have friends in school right up to 9th grade because I was likely perceived as different, and was somewhat fine with it because I had my hobbies. But there is a special sort of hell for being a child in school that nobody will include for being a bit different in the way they talk and think. I guess I spent all those years observing how to fit into my habitat and succeeding eventually. But the years before that time were pretty low. I hear people all the time say they wish they were in school again. I wouldn't go back for anything. I'm pretty happy with where I am right now.
M: I have seen some of your work. It truly is incredible. And you should definitely feel proud of it. Would you be comfortable sharing some of your artwork for our readers (scroll to the end).
N: Yes I wouldn't mind. Thank you for your kind words.
M: And I am so sorry you didn’t have any friends till 9th std, but, it's their loss. They missed out on knowing such an awesome human being.
M: I don’t want to downplay the effect of friendship and a general sense of community, or the lack of one, on parents of autistic kids. I feel like people who often reach the “Autism is a blessing phase” do so because they know they are not alone. That’s one of the things I want to do with this series as well. I want the readers to know they are not alone, whether they are autistic, or their kid(s), or both. But what advice would you have for someone looking for that community? I think finding it hard to make friends is one of those common experiences all autistic people share. What can people with this particular challenge do to still find at least few friends they can be themselves around?
N: I feel every human being wants connection. To be part of a community or even if it's just one other person who gets them. I know that this is the way I felt when I had nobody who vibed with me and there were a lot of days when I wished I would find somebody who did. Someone who shared my tastes in books and music for example. It's hard in school unless you're lucky to find friends with shared interests which is what gets the ball rolling. I think it's easier outside of school once you have a larger pool of people. For me it's been the mums in my support group. It's honestly therapeutic to share details of your life and your ups and downs with close friends you trust , knowing that they will have your back and accept you with all your flaws. I think every person deserves this, neurodivergent or not. I think for those having a hard time it's important to have those events that attract people of certain interests together. Like a comic con of sorts, lol. And thank goodness for whatsapp groups! Staying in touch with multiple people is so much easier and faster now. Tech usually gets a bad rep for people drifting apart, but if used with the right intent, I believe it can bring people together in a way and mode that they are comfortable with. I'm talking, of course, about the fact that autistics and lots of neurodivergents prefer communicating through text , me being one of them. 😇
M: What support needs or accommodations do you need in your day to day?
N: I would love to get help in household management and keeping up with housework and food prep (which I don't currently have) since I'm awful at it and also it would allow me more time for my kids. I have so many things I want to try with my kids that will improve their situation at school and reduce their challenges in communication and other areas but I am always running out of time. Time management is the bane of my existence.
M: I know!! I have outsourced almost everything that could be outsourced. And I would not have been able to survive if I hadn’t. I hope you find the help soon.
M: What is something you wish more people understood about autism?
N: That it isn't the end of the world like it is made out to be when you are first told by the person breaking the news of the diagnosis. That it isn't something to pity and mourn over like a dreadful disease you can't come back from. Autism is just a different way to be, just as valid and wonderful as any other person.
M: Amen!!! We really do need more people to understand this. One more time for the people in the back - “Autism is just a different way to be!”
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?
N: I'd tell them that they're not alone. That autism is a wonderful thing but living in a world that doesn't recognize it, or understand it is going to make it harder to navigate. Which doesn't mean autism is the problem like everyone would have you believe. I'd tell her that getting a diagnosis now is so much better than getting it 30 years ago without the internet and communication being what it was. Now there's just so much information on autism and how to navigate it, adults who are autistic who have lived experiences so you know what helps and what doesn't. The fact that you can feel stronger just by talking to some of these amazing people. And when things are difficult, it just means the system is useless and needs to change. And change will happen when we fight together.
M: Any last thoughts you would like to leave our readers with?
N: People are different. Different is good, excellent even. We wouldn't be standing here today if we were all a bunch of clones. So appreciate that different person in your life and try to be open to something new. We never stop learning and that's such a wonderful thought.
Rapid fire-
Favorite book - this is torture, I have no reference on how to choose. Right now it's Lessons in chemistry
Favorite movie - moulin Rouge. Any Baz Luhrmann movie really.
Favorite singer - Whitney Houston
A moment of your life that makes you happy - being given a Dirham (uae currency) and running into the grocery store when I was little to choose anything I wanted as a snack. And I would always choose the same thing - a box of Wonka candy called Runts which is just compacted glucose sweets. I still buy the sweets from Amazon today(thankfully still available) and I can remember those moments when I was all of 5 years old and happiness was feeling grown-up enough to choose for myself.
What is something people often get wrong about you - because I don't speak much or avoid looking at someone new they probably assume I'm standoffish or rude. Which good friends today will probably tell you I'm not.
A core childhood memory - getting chicken pox and being allowed to skip school and lie in bed for a week with a bedside table piled high with books to read. Bliss.
What is something you are struggling with right now - trying and failing to get my family onto the same page as me with regards to the nature of autism, that it isn't a disease. The ones closest to you are the hardest to convince.
What is a recent accomplishment you are proud of - I'd given a speech recently on women's day at my son's school. I'd been terrified the whole time right up to the day but managed to do it with the help of this lovely lady who's been asking me all these questions 😊 thank you again Mansi for guiding my thoughts.
Natasha, it has been such a pleasure. Thank you for your patience with all my questions and for your time.
Loved your interview it’s a different way of living Yes And they have a different way of learning The schools should know a different way of teaching
ReplyDeleteKudos dear we are all in it together