Getting an Autism Diagnosis at 36

The process of getting evaluated and the journey to increased self-compassion

Hey friends. I skipped writing a post last week. There are a few things I’m trying to put to words, and perhaps it just isn’t time for those ideas to hit your inboxes yet. As I’m sure you guessed from the title, I’m sharing a pretty significant update today, and there will be much more to come about this journey. As always, if you’re enjoying what you’re reading, I’d love it if you’d share with a friend, post to your social accounts, or leave a comment.

I have long-believed I’m neurodivergent. Specifically, I’ve been confident that I have ADHD. 

I’ve written recently about parenting neurodivergent kids and demand avoidance, and through it all I’ve touched on exploring what this might mean for how I’m wired. 

I tried to see a professional about the suspected ADHD years ago, but that particular practice wouldn’t let me see a therapist without seeing a psychiatrist on their team first.

The doctor I saw was a tall, serious, south Asian man. During our only meeting, he never smiled and made rude comments about me being a “high achieving Desi mom” (perhaps implying I just wanted the ADHD medication). Frustrated, I told him I didn’t want medication, asked for a referral for an evaluation, and left.

A few days later, I got a prescription pickup alert from Walgreens. We hadn’t discussed medication, and the anxiety and depression medications he’d ordered were unsafe for nursing my infant son. I also found they’d inaccurately coded the insurance claim.

Many tearful and angry conversations ensued with the doctor, his practice manager, and my insurance. I never got my evaluation.

More than ADHD

Since then, I’ve read estimates that anywhere from 20 to 80% of autistic people also present with ADHD, and somewhere between 20 to 50% of those diagnosed with ADHD are also autistic. I had always assumed I wasn’t one of those people living in this overlap, but I couldn’t discount the similarities between my kids’ needs and behaviors and my own childhood experience.

Even when I talked this with my therapist, she said, “I see the ADHD, but I don’t see the autism.” I told her I wasn’t sure either, but I wanted to know for sure.

So after I scheduled evaluations/re-evaluations for my children, I followed up to ask if the practice also saw adults. They did, and I was scheduled to see the same provider as my children.

She’s also Indian, and after my last experience, I was understandably hesitant. But her background and her research interests made me feel optimistic that she wouldn’t dismiss me.

Getting the evaluation

Over the course of a few weeks, my children and I had our evaluations. I filled out countless questionnaires and forms and met with the psychologist several times both virtually and in-person.

She asked what my goals were for my evaluation, and I shared that I want to better understand myself so that I could be a more effective mother to my children. I expressed a desire for clarity and context for my own childhood because I believed it would help me provide them better support. And more broadly, I wanted more information about myself to help me make decisions going forward. (As one good friend put it, “You need data. It helps you feel safe.”)

But in order to get the clarity I so deeply desired, I knew I would need to be honest and vulnerable in ways I never have before. When the morning came to go through the formal assessment, I chose to say things out loud that I’ve never uttered—not even to my husband.

For nearly three hours, she asked questions, listened, and took notes without judgment. At one point, I expressed that I would feel more comfortable if I could sit on the floor, so she got up from her chair and joined me. It was such a small but tender gesture to make me feel safe and seen.

I quickly realized that the fact that she was also Indian was an asset to this entire experience. She understood cultural norms and nuances that I’ve always had to explain to others. I don’t know that I’ve ever been able to talk about the experience of growing up in American suburbia raised by first generation immigrants from India without needing to explain what that means and entails.

I usually make analogies that I know will resonate with an American listener, or I crack jokes to retain interest and promote understanding. But this time, she was giving me insight about my upbringing—about the way our community navigates mental health, neurodivergence, academics, social dynamics, and more.

At the end of our conversation, she told me she planned to include both Autism and ADHD in my report. We also discussed adding a note that I demonstrate features of the PDA* profile of autism.

I left feeling both physically heavy and mentally clear. A fog seemed to have lifted, but I was exhausted by thinking through and reliving some of the hardest moments of my life.

(*In the future I’d love to write more about PDA and what we do and don’t know. There’s been an ongoing debate about it for years, but especially recently on social media. However it shakes out—whether it’s ultimately established as a standalone diagnosis or formally identified as a unique presentation of autism (which is how we’re considering it)—learning about PDA and intentionally making a personal and professional pivot to accommodate this collection of traits has improved our family’s capacity, connection, and quality of life.)

So what now?

First, I want to acknowledge that I’m in a privileged position to be able to write and share about this publicly. I work for myself, and I have incredible, understanding clients. I have kind and supportive loved ones, including a fantastic husband who has never discouraged this exploration and friends who have listened, prayed, and processed with me. Sure, I’ve encountered a few judgmental or unsupportive comments and eye rolls, but for the most part, I’ve felt fairly insulated from stigma and disapproval.

Since my evaluation, I’ve continued to unpack and examine various aspects of my life. It feels as though the entire categorization system I’ve been using was based on faulty logic, and I have to pull it all out and reorganize it with new parameters.

But honestly, the biggest and most constant feelings I’ve experienced are relief and gratitude. I’m so thankful that I finally have this clarity. It feels like I’m able to breathe a little more deeply, and I wish I could hug my younger self the way I hug my children. I wish I could tenderly say to her, “I’m so proud of you for trying your best. I know this is hard, but you aren’t doing anything wrong.”

Young Sunita. Not sure the exact year. (1989?)

I’ve lived with the pain and shame that things are more difficult for me than they “should” be. I thought something was wrong with me that it required so much cognitive and logistical effort for me to accomplish things that others found easy and manageable.

And I spent so much time embarrassed by this that I committed even more effort to learning how to hide it. The result? I’m professionally competent, if not successful. I’m an extrovert. I make people feel comfortable. But I also felt I couldn’t ever admit that I struggle with certain skills others take for granted.

But there’s something else that I’m grieving even more deeply: I’m devastated that for so long, my social and behavioral struggles were attributed to being Indian and gifted. I’m heartbroken that as a result, I worked hard to downplay both my culture and my enthusiasm for learning.

Even so, I’m trying not to dwell on things I’ve missed. Instead, I’m thinking a lot about what engaging my culture and my nerdiness looks like for present-day Sunita, and I’m optimistic about the opportunities I can pursue in the future to grow, learn, and connect with my heritage.

There’s an immense amount of work to be done, but I also know there’s so much healing to experience. I’m already seeing glimmers of that in the compassion I’m holding for my younger self, and I’m noticing a slowly growing appreciation for the adult I am today.

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Bits & Bobs

• If *NSYNC won’t have a reunion, my best friend and I will. | I love pop music. One of my oldest friends and I listened to our favorite boy band through studying for physics, doing calculus homework, and countless car rides. We saw Justin Timberlake together when we were in college. And we’re hoping to do it again later this year.

• Summer kids’ attire | My son would wear tank tops 24/7 if weather and circumstances permitted. He even asked for them in his Easter basket. This tank top is a HUGE hit. No tags, and great patterns/prints. We have two of the prints so far, but I’m sure more will find their way into our summer rotation.

• A parenting podcast that won’t make you feel bad | I’ve genuinely appreciated Robyn Gobbel’s podcast lately. I’d seen her content on Instagram and finally listened to a few episodes. You’ll find an abundance of neuroscience-informed, compassionate advice for when our kids’ behaviors are truly just “baffling,” as she puts it.

• A hairbrush. (Humor me.) | Another parent shared this hairbrush in a Facebook group. She was raving about her sensory-sensitive kid’s love for this hairbrush. We’ve struggled so much with brushing our kids’ hair that I was willing to try anything. So I bought one. Friends, it was such a hit that I bought another for myself. We’ve literally never had such peaceful experiences brushing hair and working out tangles.

• The fidget toy to end all fidget toys | I know I’m sharing a lot of stuff today. I get nothing out of these except the joy of sharing something that we enjoy so you can enjoy it too. Anyway, this fidget’s on sale, and we’re obsessed with it.

Ok. Thanks for being here and for reading. Until next time, friends. 👋