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Guest Essays

The Undiagnosed Autistic Somali Experience

This guest essay was commissioned from

Said Shaiye⁠

. Said Shaiye is an Austic member of the Somali diaspora. Writing & Photography are his main loves, but Raspberry Cream Cheese is a close second. His debut book, ARE YOU BORG NOW, was published by Really Serious Literature. It's an experimental memoir with elements of self-interview, docu-poetics, photography & more. He can be reached at

www.saidshaiye.com⁠

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I found out I was autistic about 6 months ago, but I knew something was different about me all my life.

For many years, I thought of myself as an introvert, a writer, and at one point a Highly Sensitive Person. I kept looking for ways to understand myself, to explain why I was so different from everyone—including my family.

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The answer came unexpectedly from a friend of mine who, within moments of meeting me, told me I was Autistic. At first, I bristled and pushed back, because I didn’t know what being Autistic meant. Eventually I accepted it after doing research online and talking with other Autistic people. I felt confident enough about the facts to diagnose myself as Autistic, which I then got confirmed in a formal diagnosis.

It wasn’t that easy, of course—I’m skipping past months of anxiety and bureaucratic hell to get that formal diagnosis. You don’t need me to tell you that the US healthcare system is messed up. It’s especially difficult to navigate for late-diagnosed Autistic people. Forms stress me out, man. I had to advocate myself and chase down a provider who would take my insurance and was familiar with diagnosing adults.

One provider told me he needed my family to be in the room for all four hours. I responded that would be difficult because my parents are limited English speakers. He responded well we’d have to schedule multiple appointments with an interpreter, and your parents would have to drive to Minneapolis from their small town in rural Minnesota (a three-hour round-trip drive). He was gracious enough to give me a long list of local providers who specialized in Autism diagnostics. He even told me which ones specialized in working with kids vs adults.

I called every single name on that list, only to find that most places were booking six months to a year out. The pandemic made the wait longer, but apparently it was always a long wait. Long story a little less long: I found a place, got scheduled for an appointment three months out, and did the assessment. It was four hours of hell, man, let me tell you. It was a series of increasingly difficult tests and puzzles, word games, math problems, and a buncha other stuff I can’t remember. What I do remember is how shitty I felt afterwards. My brain and body were pushed past their limits in the first hour, and then another three hours of mind-numbing tests. It took me a solid week to recover.

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I became physically ill as a result of the painful process I went through, but I needed answers, or at least confirmation. If I could go back in time, I probably wouldn’t do the assessment. There’s a reason why the Autistic community believes self-diagnosis is valid. No one know what it feels like to be you better than you. Plus, systemic barriers prevent most Autistic people from getting access to an affordable diagnosis in this country. I was fortunate in that my insurance even acknowledged a necessity for the assessment. I was still going to have to pay over $1,000 out of pocket, which I really couldn’t afford on a grad student budget. But I lucked out again (I prefer to think that God was looking out for me)—my provider donated some of her time for free and squeezed in as many of the assessment parcels as she possibly could within our time frame. I’m very grateful for that, because without this assessment, I wouldn’t be able to get accommodations in school or work moving forward.

I found out the results later that same day: Autism Spectrum Disorder and ADHD. I hate anything with a disorder moniker because it feels so fatalistic. I was misdiagnosed as having Borderline Personality Disorder a few years ago. I bought into and believed I was broken. That ruined a year of my life, until I met a therapist who specialized in trauma and told me all my symptoms are related to extreme childhood trauma, which I knew I had a ton of.

I say all that to say: I was used to getting Very Bad News from a diagnosis. I went through a lot of emotions because of this one. The ASD I was expecting, but the ADHD was unexpected. A friend of mine helped reassure me by saying “You’re not broken, Said. Broken people don’t publish books like you have.” I wanted to respond: actually, I know a lot of people who publish books and uhhhhh they’re pretty broken lmao. I decided to solemnly nod in agreement instead.

The worst part of all this was that I couldn’t tell my family about my diagnosis because I didn’t know what it meant. Shit, I still haven’t told my family and I still don’t know what it means. I’m afraid of what they’ll say. I’m assuming they’ll dismiss it, which is a natural assumption, because I know how dismissive my culture can be of things it doesn’t already know.

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I later went back to thank the friend who first told me I’m Autistic for giving me a secret roadmap to Understanding Said. She replied, “You were already on the way to that conclusion, I just gave you a little push.”

So how could I not realize that I was Autistic? Well, I’m Somali. What does that mean? A lot, and not very much. The thing about Somali culture is: it’s extremely outgoing. I’m talking a lot of smiles, endless eye contact, group socializing. These are all Autistic nightmares, but growing up in a Somali household, you’re expected to partake in social gatherings. You’re expected to display good manners, to say the right things at the right time.

I always thought there was something wrong with me for not wanting to go to family gatherings or weddings or big crowded Somali restaurants. Turns out that my body knew something that my mind did not. If you know anything about being Autistic, you know that we are sensitive to sensory overload. Growing up in a loud Somali house with a steady stream of visiting guests you’re expected to make small talk with is a recipe for sensory overload.

Sometimes I look at my Autistic peers who seem to tolerate stress and socializing so much better than I do, then I remember that they probably had childhoods that were a lot less traumatic than mine. I don’t like to talk about it, because it’s painful, but the first seven years of my life were spent escaping the Somali Civil War & growing up in Kenyan refugee camps. After that, we moved to the States and I had to learn English while forgetting everything I knew about the world prior to that. That kind of violent upheaval is hard on any child, but especially so for one who is sensitive to sensory input.

I went back to Somalia as an adult and the first thing I noticed was how bright the sun is there. It seems to be an extra octave higher than even neighboring Kenya. Add the sounds, the hustle and flow of traffic, the random gunshots (and depending on what part of the country you’re in, occasional bombings), and you get more Autistic hell, never mind having to interact with people while all this is going on.

I look around me now and see a generation of Somali adults coming into their own neurodivergence. I have several Somali friends who’ve told me that they recently discovered they either have ADHD, are Autistic, or both. We’ve been drawn to each other over the years because of how difficult it is for us to navigate Somali culture—even here in America. The culture does not leave much room for anyone who doesn’t fit the norm.

Here is what that norm looks like: You Dress the Right Way, Speak the Right Speak, Eye Contact Oppressively. You crack jokes, you make fun of people, and you are not hurt by insults. You go to the social events because that’s what is expected of you. And you never complain about how bad any of this makes you feel. You see, Somali culture isn’t very friendly to the Autistic body or mind. There’s a lot of yelling and just general boisterousness involved. So, people like me and my Neurodivergent Somali friends tend not to be very popular.

That’s a microcosm of how general Neurotypical culture patterns push Neurodivergent people to the margins. We say the wrong things (ie, the truth) at the worst times (ie, right then and there). We are not interested in doing things just because they’re popular. We think for ourselves and only spend energy on that which fulfills us. We are not in a competition with anyone to be seen and validated because of the clothes we’re wearing, the people we know, the things we’ve accomplished, etc.

Still, after being made to feel like a loser all your life for being yourself, you start to wonder if everyone else has it figured out. You start to long for acceptance and find yourself making friends with people you know aren’t good for your wellbeing. You mask, even when you don’t want to. It’s very tiring.

It’s not all doom and gloom, though. Somali culture has many saving graces. No one will come to your aid during a hardship like Somali people will. I had a car dealer friend who once told me, “You Somalis borrow cars how most people borrow cups of sugar.” I smiled and laughed because it was true—someone was borrowing my car that same week. We’re known for our generosity and selflessness, even if some of us are more selfish than others. But that’s the human experience: we all have our pros and cons as people.

I’m also grateful for growing up in that same culture, because I realize it forced me to learn a lot of social skills I otherwise might not have. Socializing and small talk are extremely painful for me to endure, and I have less and less tolerance for it the older I get. But I recognize the privilege of having those skills to fall back on when I need to. Was I traumatized in the process of learning how to smile and chit chat while making extreme eye contact? Absolutely. Have those skills helped me in my life? Also true. I guess it’s kinda like ABA therapy. Like many of the Autistic children who are forced into it, I didn’t have a choice. But again, there’s good and bad with everything. Anyway.

I used to work as a medical interpreter at a children’s hospital here in Minneapolis. Often I would see Somali parents bringing their nonverbal Autistic kids to clinic for physical and occupational therapy. I’ve seen a lot of hype and hysteria in my community about autism, but I never really knew what it was. I laugh now looking back at it all, because I was exactly what I was afraid to know about.

One time I was getting done praying at the Masjid inside of the Karmel Somali Mall. That’s one of the amazing things about Minneapolis, we have Somali malls. It’s like a slice of back home in the middle of a snowy hellscape. Anyway, I’m getting ready to stand up and leave after we finished congregational prayer. This guy stands up, walks to the front, and grabs the mic. This is what I remember him saying (in Somali):

“Excuse me brothers and sisters, I don’t want to take too much of your time, but I have an announcement to make. There’ll be an Autism meeting next weekend at Abu Bakr (another local Masjid). This will be your chance to meet a doctor from India who says he can cure Autism with stem cell therapy. His methods haven’t been proven, and only God knows if they work, but he’s flying all the way out here to help our community. Insurance doesn’t pay for something like this, but it’s not an unreasonable amount of money to cure your child of Autism.”

I can’t remember the amount of money he said this so-called doctor would be asking for, but I remember it being an astronomical figure (like 25-50k USD). My community is not unfamiliar with snake oil salesmen. We have this tendency to believe in quick fixes. We desire easy solutions and uncomplicated answers. This Is The Way.

I didn’t know I was Autistic back then, but something in my stomach felt how wrong this scenario was. How could someone stand up in a House of God, right after we got done praying, and help poor parents get exploited by Snake Oil Salesmen? It just didn’t make sense to me.

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Now that I know I’m Autistic, I have further thoughts: how could you cure someone of something that isn’t a disease? What part of MY MIND SIMPLY WORKS DIFFERENTLY FROM YOURS is a disease? I’ve never understood this world, and the older I get, the less I understand people’s motivations within that world. All we can do is cling to hope and find pockets of joy.

When I spoke about immigrant communities having a very high rate of Neurodivergence, I forgot to mention one aspect of it. The degree with which those neurodivergences are expressed tends to be greater than in other communities. Again, I really attribute all this to extreme PTSD. But

PTSD looks different in autistic people than it does in allistic people!⁠

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Something as severe as war can be traumatizing on an unimaginable scale to an autist, but so, too, can something as seemingly commonplace as a very loud fire alarm at school. Another thing that comes to mind: growing up Autistic in an extremely social, outgoing, boisterous culture (such as Somali culture). That is a recipe for disaster—I mean, trauma. Trauma can lead to many things in a person’s life, but substance use and abuse come quickly to mind. There is a growing body of evidence that suggests a

strong correlation⁠

between autism and susceptibility to substance use and/or abuse.

Substances can lead to a state of perpetual Autistic overwhelm/shutdown/burnout. If a person has ADHD, they may be running to those substances from a place of self-medication. Either way, the end result is (you guessed it) more pain.

I was standing outside the ER a few weeks ago, waiting to be seen for a shoulder injury. A young Somali brother was there, going through an acute psychiatric crisis. His family was with him, trying to get him admitted and seen. They said he hasn’t slept in days, he’s clearly manic, help him. The security people said they couldn’t legally force him unless he consented to being seen. He would consent, then 2 minutes later, change his mind. I know what psychosis looks like because I’ve been there myself. I’ve seen family member go through it. It’s not an easy thing to witness, but not as scary as most people think if you’ve been through it yourself.

I tried to help get the brother registered. He saw a familiar face in me—another young Somali man who seemed like a reflection of himself. He asked me questions about things we’d never experienced together, but I played along and said yes, of course I remember. That made him feel like he knew me, which made it easier to try and get him into the hospital. Normally I wouldn’t condone something like this, which is basically a form of lying, but I felt the immediacy of his situation warranted it. His family had said he’d been found walking naked on the freeway.

I know how dangerous it is to be Black and male in this country—even more so when a mental health crisis is involved. The police don’t need a reason. We all know this. RIP to Brother Floyd. At one point, I remember talking with a sister of the Somali brother at the ER. I shared my past experiences with her, told her I’d been where he is, many times. She looked to me for hope, asked how I overcame it. I didn’t know what to tell her, other than my family’s belief in me, the grace of God, and a stubborn persistence to find healing. You see, I have complex PTSD.

What we know about autism is that C-PTSD exacerbates Autistic sensitivities. There is a higher prevalence of Neurodivergence in immigrant communities because their children often go through traumatic events at an early age. Witnessing a civil war, growing up in a refugee camp, and immigrating to an unfamiliar country before the age of 10 all count as traumatic events.

According to the clinician who did my autism assessment, the prevailing theory in the medical community is that Adverse Childhood Experiences (ACEs) tend to activate genes related to neurodivergence at a high rate. Children of immigrants, even if they didn’t experience those traumas back home, are still exposed to the untreated traumas of their parents. Immigrant parents often don’t have the time or resources to invest in psychotherapy and other means of addressing PTSD. So they live with that trauma, and that trauma affects their relationships, and both of these things are unwittingly passed onto their children.

So what do you get if you combine a high rate of neurodivergence in Somali children (which is often underdiagnosed or unrecognized) and parents who have complex trauma which they haven’t healed from? I’m not good at math, but the only word I can think of is PAIN. Psychology people refer to it as insecure attachment styles. I think this happens when you are raised by a traumatized parent who has a hard time forming healthy relationships. This can lead to a lot of chaos for any person, but even more so for Autistic/Neurodivergent people.

Specifically in the Somali community, there is also a reticence to talk about one’s problems because it is seen as shameful. It’s hard to heal if you can’t even say out loud the thing which causes you sleepless nights. I remember one time, as an interpreter, the person I was interpreting for said he couldn’t sleep at night because he still saw the images of his family being killed before his eyes during the civil war. We have an entire community of people with similarly painful experiences that are holding it in because the community will shame them for “showing weakness.” It’s not healthy, and one of the things I dislike the most about our culture.

Luckily, things seem to be changing with the younger generations, but not very much. They are still the children of their parents, after all, and will shame you for expressing vulnerability while they post on Instagram about the importance of mental health. I know, life is complex, and then you die.

But I’m grateful for it all. The complexities and absurdities. I’m grateful for my appreciation of soft things and for the subtle attention to detail that autism has blessed me with. Well, I’ve always been autistic, but now that I know it, I can appreciate the innate parts of myself that I have always loved with even more love. As for the apparent and unapparent challenges that come with Autism, I embrace them just as much. Because now I have a roadmap to all of my sensitivities and strengths. I can lean into that which makes me stand out from the crowd, while minimizing potential harms that may come my way.

This is especially important as a Somali person. I can avoid big gatherings of boisterous Somali people with no guilt or shame. I know that it’s not my scene, and that I’m much happier meeting a close friend for tea and a walk by the river. We can talk for hours about our special interests (poetry, anyone?) or we can just sit in silence as we stare off into the river, watching the sun disappear into the horizon.

A lot of people are scared of autism. You shouldn’t be. You’re missing out. Trust me. Pass me the bagels and cream cheese.

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