After receiving my daughter’s autism diagnosis at her paediatrician’s office, my husband and I were relieved. After I shared my daughter’s diagnosis with her kind Montessori principal, she asked me, “Is she getting therapy?” The subtext was that my daughter was broken, and therapy could fix her. I was afraid for her future and bought into the fear.
While my husband worked to pay the bills, I would drive her to occupational therapy, play therapy, swimming class, accompany her anxiously, then drive her home. I kept glancing at her in the rear-view mirror while she chatted to me, or happily ate her snack. Was she really doomed if she didn’t go to All The Therapies? I wished I had more money to send her to equine therapy. I loved horses.
As I relaxed, she relaxed. Over time, it slowly dawned on me. She isn’t a child with autism. I’m not a mother with autism. We are autistic. And yes, while do help us, we are not broken. We are simply different.
The default medical model of autism views it as a disorder, and through a deficit-based lens. I tried to speak to my loved ones about how , and that I realised I’m autistic after my daughter was diagnosed. Maybe I wasn’t clear about how this made me happy because I struggle to communicate. Had I spoken to a doctor about it? They’d ask. But I didn’t want to speak to a doctor. I just wanted to say it out loud: it’s okay to be autistic. I wanted my family and friends to know that it’s okay to be autistic, as it is to be a woman, as it is to be Muslim. I contain multitudes.
I wanted my family and friends to know that it’s okay to be autistic, as it is to be a woman, as it is to be Muslim.
Connecting with other autistic adults has been so affirming for me. It makes me both laugh and cry to see how similar we are, and how similar we have always been, right from birth. Hypermobile joints? Check. Digestive issues? Check. Too honest? Check. Difficulty sleeping? Check.
I’m part of a private Facebook group centering the experiences of autistic parents. The amount of overlap in our triumphs and struggles is mind-boggling. My whole life, I longed for my neuro-kin and didn’t even know it until I gave birth to my daughter. My feisty, funny, fiery daughter, who leads me back into a daily path of transformation, and self-acceptance.
I am autistic. My daughter is autistic. It’s not something we can switch off and on at will. It’s the lens through which we view and interact with the world. We are enough as we are. We are disabled, albeit invisibly, and worthy of support. Disability isn’t a bad word.
On days where I have a chronic pain flare-up, or if I’m extra-anxious about something, I can have trouble realising it. My husband will help redirect my attention by asking, “Why are you scolding me?” That’s when I’m able to notice and start to relax. The term for what I’ve experienced my entire life is , a subclinical phenomenon involving a lack of emotional awareness or, more specifically, difficulty in identifying and describing feelings and in distinguishing feelings from the bodily sensations of emotional arousal.
Some days, my daughter will struggle. She’s pricklier, shouts more at her sister and is much more controlling. So much like me, when I’m struggling and grumpy at my husband and daughters. On my good days, I’m able to set the tone by taking a deep breath and hold space for her big feelings. On my bad days, I cannot. Sometimes, my daughter is able to relax on her own after she uses the bathroom, or eats. Other times, I’ll notice a scratch on her knee and ask her if it hurts. She’ll sheepishly nod and say, “Yes. That’s why I was grumpy. Sorry, Mama.” It would be so much easier if she could just tell me what’s wrong. It would be so much easier if I could tell my husband what’s wrong. The trouble is, that’s not how our brains work. Parenting an autistic child requires a far deeper, more intuitive connection, instead of one rooted in parental dominance over one’s child.
When I was an autistic child, it wasn’t safe for me to unmask. Instead, I learned to dissociate, disconnect from huge feelings I didn’t know how to handle on my own, or find temporary comfort in unhealthy coping mechanisms. I am so grateful my daughter doesn’t have to go down that path. I hope my daughter has an easier time recognising her needs, and doesn’t have to wait till she becomes a mother herself.
Saying that I am autistic, ADHD and demand-avoidant rings far truer than describing myself as someone with autism, ADHD and demand avoidance. If I was with them, wouldn’t I choose an easier path — by going without them? And therein lies the paradox. These lesser understood, lesser loved and appreciated parts of me are as essential as the parts that are more palatable. With my imagination comes my moods. With my hyperfocus comes my difficulty in letting go. With my deeply felt passions comes my impulsivity.
These lesser understood, lesser loved and appreciated parts of me are as essential as the parts that are more palatable.
I use person-first identification to name who I am. To claim who I am. I claim myself as autistic. I claim my autistic daughter as mine, and she is wholly perfect in her imperfections, as am I. This is the legacy I gift to myself, to my daughter, and if she wants children, to her future children too.
I hope to see enough change in my lifetime, for autistic people in all our rich neurodiversity to be seen as inherently worthy human beings. I look forward to a day where someone saying “I’m autistic” isn’t received with pity (“I’m so sorry”) or denial (“You don’t look autistic”). I hope for a day where it’s received with acceptance and celebration – “Cool! What’s your latest interest?”
Noor Abdul is a freelance writer.
