"It All Makes Sense Now!": Receiving an Autism Diagnosis as a Teen or Young Adult
Autism diagnoses are on the rise, with current data showing autism rates of almost 3% in children up to age 8. That’s 1 in 36–and those are just the kids who’ve been diagnosed! We often think of Autism as a diagnosis you’d receive as a child, but that’s not always the case. If you’re a teen or young adult—or an older adult- who’s just been diagnosed with ASD, you’re not alone.
I’m Donna. I write for EKC, and this is a little different from our typical articles. I was diagnosed with ASD when I was 29, so if you’re going through the process of diagnosis “later in life,” I’m right there with you. It’s World Autism Acceptance Month and there’s no better time to share our stories and find our community.
When you’re diagnosed as autistic way past childhood, it can bring up a ton of emotions. Relief, confusion, validation, sadness, even joy–the whole spectrum, if you’ll pardon the pun. And it doesn’t just affect us—our diagnosis can ripple through our families too.
At EKC, we often work with teens and young adults who receive an ASD diagnosis later than expected. We sat down this month for one of our EKC Roundtables to reflect on what the experience can feel like and how to help our clients as they process. As an autistic person myself, it’s really interesting to get the therapist perspective.
I’m writing this article for you, for me, for the person I was when I was first diagnosed. There are so many “universal experiences” you’re about to find as you explore the autistic community. Here are a couple I wish I’d known about from the start:
You Might Not Be The Only One In Your Family
Jackie started the conversation by mentioning how common it is for parents to recognize themselves in their child’s diagnosis. Sometimes, a teen getting evaluated becomes the first time a parent considers how autism might have shown up throughout their own life.
She pointed out that families can become more self-aware when a child is diagnosed. It can really shift the way they communicate and help everyone respond better to each other's needs.
Inka mentioned that it can also lead to a sense of guilt, for not spotting the signs earlier. Parents might wonder if they missed chances to support you more effectively. Or it can even lead to a kind of personal discovery! Recognizing that they, too, might be on the spectrum can bring some peace—and self-acceptance—to other family members.
This was certainly the case for me. When I told my family about my diagnosis, my aunt looked like everything “clicked” for her. She started giving me story after story of other members of my family who were “just like me.” One of my cousins later sought diagnosis because I did, and was properly diagnosed, too.
It gave us a new bond as we leaned into embracing our special interests and celebrating the parts of ourselves we’d spent years suppressing. Suddenly, there was so much more space for joy! As there’s a genetic component to autism, it’s no wonder that my first autistic community was my own family—but it did give us all a better sense of understanding and togetherness.
It’s Normal to Grieve Missed Time
Receiving your diagnosis can be a mixed bag of emotions. It’s really common to experience a sense of sadness, about what wasn’t known sooner. Kate described it as a sense of grief. “So many things were missed. A lot of these kids went through childhood being misunderstood—not just by others, but even by themselves.”
The label doesn’t necessarily feel as “defining” for someone who’s already made it to their teens or twenties without specific support. But it doesn’t erase the sting of knowing that things could have been easier. There can be a heaviness to it all.
When I was diagnosed, I thought a lot about my life—and my childhood in particular. My school years, the bullying, the trouble I had making friends, the hobbies no one else seemed to understand—it was a huge relief to finally have a “reason why.”
At the same time, I wonder what life could have been like if I’d had that reason earlier. I feel like I can give myself so much more space, be so much kinder to myself now. It might have been amazing to have that as a kid, but maybe I wouldn’t have really understood it until I was an adult anyway. There’s no way to know. I’m just glad I have it now.
Even if it’s coming a little late, I hope that you can be kinder to yourself, too. You deserve all that warmth, and you always have—with your diagnosis, not despite or because of it.
Sometimes Your Brain Might Be Mean To You
Adam brought up an important point about that too: a diagnosis isn’t always necessary for everyone. But when it is helpful, it can completely shift someone’s self perception. Instead of thinking, “I’m lazy,” or “I’m just not trying hard enough,” people who’ve been diagnosed with ASD begin to understand that their brain’s just different. It’s not about “making excuses”; it’s about finally acknowledging the challenges.
He also talked a little about internalized ableism: the harsh self-talk that can come from years of feeling “less than,” or “too much. Reframing your past, realizing that you’ve always had autism, can help undo that damage.
This one resonated with me in a big way. I used to be extremely hard on myself. I felt a sense of being on the “outside,” especially socially, but not knowing why, or how to get “in.” I was always the “weird kid” and it hurt.
Those memories kept hurting in adulthood, even after I’d “learned” to make friends and be more social, often through painstaking work. I tried so hard and it didn’t make sense that it seemed like everything was so easy for other people. I thought I still just wasn’t trying hard enough.
Among my autistic community (and yours, too!), this is a really common experience. Almost all of us have felt that way. And we’re here to tell you that you were never failing. You were working hard the whole time. It wasn’t your fault that your work wasn’t always seen.
You’re Not “Just Sensitive”
Adam also brought up another really important point: your feelings are valid, even when those feelings are invisible to others. “Being overwhelmed by sound isn’t the same as being annoyed by a loud cafe,” he said. “For someone with ASD, it can feel physically painful.”
This is actually a scientifically documented phenomenon. It’s called “DST,” or “decreased sound tolerance.” A recent study showed that up to 70% of us have experienced it at some point in our lives. Up to 45% of us experience it “as among the most prevalent, persistent, and disabling sensory features of autism.”
It’s not just you, and your experience is real. You’re not being dramatic or overly sensitive. There’s a reason things might feel harder for you, and that’s because they are, neurologically speaking. I’ll say it again: what you’re feeling is valid.
On my end, I take earplugs everywhere I go. I pop them in when I’m outside, in a crowd, on a train, or just overwhelmed and can’t find a reason. It’s usually that there was a sound I couldn’t pinpoint, and earplugs make everything more manageable. I also use noise-cancelling headphones and play my favorite music or a podcast while I go about my daily life. It’s an easy way to make otherwise difficult spaces a little nicer. I highly recommend giving it a try.
There’s a Gender Gap In Autism Diagnosis
Maayan pointed out something else I found interesting: for many girls and women, diagnosis comes much later—if it comes at all.
It makes sense, and it’s another scientifically documented aspect of ASD diagnosis . Girls are often socialized to “mask” their symptoms more effectively. As a girl myself, I know that I had to learn to copy social behavior and keep my discomfort hidden. There was a ton of shame around behaviors that I now know are typical for people on the spectrum: stimming, pica, scripting, various compulsions.
Because girls, myself included, learn to mask” from an early age, it can make their autism harder to detect. This is exacerbated by the fact that diagnostic criteria are often based on how autism presents in boys. Maayan emphasized the need to expand how we think about ASD—because it doesn’t always show up in the same way for everyone.
You Can Find Books on ASD by Autistic People
When I was first diagnosed, I immediately went into the rabbit hole. I read everything I could about autism and autistic brains, behavior, and community. There was so much joy about it, finally learning about myself. Here are a couple books I’d recommend. They’re all written by people with ASD, at least in part and I found them to be great resources.
Different, Not Less, by Chloé Hayden: Yes, that Chloé Hayden. She was diagnosed with ASD at the age of 13. Adam recommended this book in the roundtable and I heartily concur. It’s part memoir and part practical guide—and her tips are good!
Loud Hands: Autistic People, Speaking, edited by Julia Bascom: This is an anthology of autistic stories and experiences, in the words of autistic people. It really gives a good view of the emotions that come with being autistic—and just human. It made me laugh and cry. Highly recommend.
Unmasking Autism: Discovering the New Faces of Neurodiversity, by Dr. Devon Price: I found this book really interesting. It offers a balanced view of masking, and how we often mask without realizing it. Dr. Price is both trans and autistic, so he has a unique perspective and understanding. It blends research and his personal perspective. This book really helped me think about the mental and emotional cost of hiding my true self, and to free myself from that pressure.
The Reason I Jump, by Naoki Higashida: This book is pure poetry. It’s written by a nonverbal, autistic, 13-year-old Japanese boy and is about how he sees and processes the world around him. Because he’s nonverbal, he’s faced unique challenges in helping others understand his cognitive abilities. His thoughts, passion, and emotion were a joy to read.
Odd Girl Out: An Autistic Woman in a Neurotypical World, by Laura James: Odd Girl Out was a frankly incredible memoir. Laura James wasn’t diagnosed until her 40s. She’d worked as a journalist (hence the excellent writing) and had always felt that feeling of being “othered.” It’s another example of a combination of research and memoir. The book follows her life for a year, as she goes through the process and comes to terms with being diagnosed.
It’s Okay to Ask for Help
Being diagnosed with ASD is a lot to come to terms with. For me, it felt like a ton of memories were crashing in on me in waves. Those memories finally made sense, and that was a relief–but it was overwhelming to experience. It felt like I’d been living a life in pieces and suddenly they were coming together. I felt more “myself” than I ever had before—but also had no idea who I was. I’d been masking so long that taking off the mask felt impossible.
My therapist helped enormously. Having a safe space to talk things through, someone who asked questions that helped me make sense of things—I’m forever grateful to her. And I so highly recommend talking to someone about your own experiences. You don’t have to go it alone. You’ve been trying so hard for so long and it’s okay to reach for help.
Life post-diagnosis feels different for me. Lighter, better. I know that there’s no universal experience, and if what you’re feeling isn’t that—that’s okay too. You are deserving and worthy of love and care, just as you are. I wish you all the very best that life has to offer.
Navigating a Change? EKC is Here for You.
Expat Kids Club isn’t just for people who live abroad – it’s for anyone who identifies as a current or former expat and needs support, anywhere in the world. We also offer video consults and appointments so our clients can build a stable, trusting relationship with their therapist, no matter where life takes them.
We specialize in helping people navigate new experiences and situations from the universal to the unique. Our mission is to help kids, teens, and families build resiliency, discover their identities and values, and form healthy coping strategies to manage the tough moments.
EKC recognizes the importance of treating the family as a unit, bringing everyone together. We work with an individual approach and a systemic mindset to determine the best through any challenge.
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