Noor is an Autistic Muslim woman of color and a proud mother to her Autistic daughter. She has two university degrees, one diploma, and many, many favorite books. She is passionate about the role of spirituality in healing and the power of writing our own healing narratives. Noor is a regular contributor to the NeuroDivergent Collective, a collective of Autistic experts from a wide range of fields who publish multimedia content on various topics pertaining to Autism, ADHD, PDA, Dyslexia, Tourettes and more, for the purpose of educating and informing families, individuals, educators, and Allied Health. This week Noor shared the life-changing experience of discovering her Autistic identity and how that has shaped her family relationships.
On your NeuroDivergent Collective profile, you state, “Knowing I am autistic means I can finally release the breath I didn’t know I was holding.” How did you eventually realize you were Autistic and how has your life changed since then?
I eventually realized I was autistic after giving birth to my children. As my first daughter grew older, she found more and more things challenging. And it was the birth of my second daughter, (my oldest was 2 ½ when we had our second baby) when things got really tough.
My oldest was obviously my first, and I didn’t know any better. I just thought she was always an intense baby who had lots of big feelings and was prone to colic and struggled to sleep. From the very beginning, despite some very well-intentioned but bad advice, my traditional “punitive” forms of parenting just never, ever worked for her. But what worked from the beginning was a more instinctive, intuitive, responsive, emotional regulation. This approach seemed to trigger a lot of people (who I now realize were probably punished as children for simply being children) who thought it was very strange to see me work hard to decipher and meet the needs of my oldest.
But my life changed after I realized, “Oh, my daughter’s autistic and so am I.” To be honest, my husband was the one who helped me put the pieces together because, as a mom, I was clearly very emotionally attuned to my children. While that gives me an advantage, that can make it hard for me to see my contribution sometimes.
It really helped when I realized that autism is just a different neurotype. I was never diagnosed as a child, a young adult, or even an adult. Seeing my daughter’s challenges significantly decrease when we finally figured out what was going on was life changing. I could allow myself to breathe over the fact that I just didn’t know any better, and I could give myself that compassion. A lot of unhelpful advice, like “she just needs more discipline,” or “she has to learn”-that came from other people’s unaddressed pain–I didn’t have to take that on. So I guess my life changed in the sense I could do better for my daughter, myself, and hold myself with more compassion.
How does having your own diagnosis help you advocate for your Autistic daughter?
I am actually self-diagnosed. Because I am a Muslim woman of color, there are barriers to me obtaining a “formal” diagnosis from a health professional because a lot of the autistic experience is centered on a cis-hetero white male/cis-hetero white female (although the female representation of being autistic is fairly poor as well). It’s not as documented as it ought to be let alone for someone like me. I am a freelance writer, but I’m also the anchor parent and the main caregiver for my daughters, so I don’t have a particularly stable or lucrative income, and private diagnoses take a lot of money and time. I don’t have either at this point.
So, while it was really wonderful getting to know about Kristy [the ND Co. founder] and being so validated. Back when she did coaching calls, it was life changing just having one coaching call with her and hearing her say that being autistic runs in families, and it sounds like I fit the neurotype as well. She said she hasn’t met a PDAer [pathological demand avoidance] who hasn’t also got ADHD, so it was just so wonderful hearing that and being seen.
So just knowing that it’s not a character flaw, it’s not a failure on my part, it’s not my daughter being naughty–it’s simply the way we are, and we’ve been wired beautifully, wonderfully, perfectly in a world that is unfortunately extremely ableist…It helps me advocate for my daughter because I’m also advocating for my inner child, the younger me who had none of this kind of support, and that’s healing as well. It’s triggering in some ways because it’s incredible to see the amount of self-determination and freedom of expression that my daughter is safe to have in my home, which I was not allowed to have in my childhood home. So it’s a wonderful journey. It’s a true gift being able to know my identity and my daughter’s.
You’ve written that growing up, “Books were safe. People were not. Books made sense. People did not.” Can you give an example of what felt unsafe or was confusing for you and how, under different hypothetical circumstances, you would not have felt this way?
An example of what felt unsafe would definitely be in high school. A teenage girl’s complex…she can have a lot of things she is working out, identity and whatnot. Being an autistic high schooler was really challenging because I struggled with being bullied. I guess I was different even if didn’t know what exactly about me was different. I was part of a racial minority at the time. I was very academically driven, and I did socially unacceptable things, like ask for more homework from the teacher. I know, I know. Now, in hindsight, I realize that that’s probably not the right call. But in academics I thrived. It gave me a sense of control and achievement.
But I just didn’t understand the social niceties that came with friendships. I didn’t understand how to resolve conflicts. I didn’t see that very well at home either, so that didn’t help. I guess it’s impossible to reverse the trauma of my past, and everything unfolded the way it did, and I can just make meaning now from that as an adult. Thinking back, even preschool and primary school were hard for me – I was always on the outside, looking in, and didn’t understand how to play well with other children. A lot of my social anxiety came out as verbal aggression, which didn’t help things.
But what would have helped would have been if my parents would have both started individual therapy and marriage therapy and if they had decided to part ways so that we could have had a safe home. That would have been helpful, just to have been able to feel safe at home. Because having safety at home will make me more receptive to getting support. It would have been helpful if I had some kind of play therapy or art therapy or music therapy–any kind of therapy to process the hardships I was going through in high school and beyond.
And it wasn’t just the harm I endured in high school– it was ongoing. I don’t know the statistics off the top of my head, but I do know that autistic women, and I would assume that particularly autistic women of color, are more prone to being abused and to be groomed for abuse and to not say anything about it because we don’t know any better. The way I watched my father interact with my mother set up an expectation of what I deserved in terms of fake love, because that’s not love, that’s abuse, and that’s something I was wired for, unfortunately, and that led to a lot of unfortunate decisions when it came to men, and I’m grateful that I didn’t get into even more trouble than I already did.
I’m so grateful that I did my hard work, and when I met my husband, I could recognize that he is a safe, good man. And I could be honest that at the time all I knew was that I had a diagnosis of bipolar, and I was honest with him, explaining this is who I am, and I’m working through this, and I’m on medication, and I’m weaning off it for pregnancy – when I was ready. He was with me from the beginning. It was never something I hid because I knew that part of a healthy relationship is honesty about my limitations, and we’ve been married for ten years now, and it’s been a wonderful journey of growth–not always easy–but he has been the benchmark of safety for me and safety for my children and safe, resolved conflict. I guess that’s something I really want to continue for my daughters–to have a dad as a safe space so that that’s the expectation should they want to marry in the future.
What is your greatest hope for the world your Autistic daughter will grow up in and live as an Autistic adult?
I hope and pray for a world that is more just, that is more compassionate, that is more accommodating to everyone, particularly the elderly, the disabled, the vulnerable. I hope and pray for a world where there is a more equitable distribution of wealth and there is not just the 1% hogging all the money and the rest of us are just fending for ourselves. I hope for a world that is connected through love and compassion, where those of us who are different can cross those bridges through empathy and one in which my daughter will feel safe in and one where she is loved and celebrated for being exactly who she is and not having to hide the parts of her that are not socially “acceptable” because they aren’t neurotypical enough. I have many hopes. These are just some of them.