Late Diagnosis and Autism: Why Does It Matter - A Personal Story

The path to a late autism diagnosis is like finding a missing puzzle piece that for many of us, we didn’t know was missing.

My Personal Story

For me, it started with my dog Ripley.

A couple of years ago, I saw people teaching their dogs to talk with recordable buttons, and I knew I had to try it. I was obsessed. When we brought Ripley home we already had buttons waiting for him. Immersed in the talking dog community, I grabbed Alexis Devine of Whataboutbunny’s book - “I Am Bunny” the minute it arrived in the mailbox. Instantly I was hooked - I couldn’t stop reading. I related so deeply. She spoke about how she and Bunny were alike and I laughed as I looked at Ripley from across the room. Yup. Us too. A little sound-sensitive. Check. Big feelings. Check. Socially hot & cold. Check. Check. Check.

The Eureka Moment - Realizing I’m Autistic

Then I read a passage about her late autism diagnosis. And then I read it again, and again. The words she used to describe her experience were nearly verbatim to how I explained myself to my new therapist just days before. 

I about fell out of my chair. 

It was like all the pieces instantly came together. 

I did what most late-diagnosed autistics do next and proceeded to take every online autism assessment I could find, devoured the DSM criteria, stayed up late reading all the latest literature, and consumed at least 3 weeks' worth of autism-related Tik Toks and Youtube videos in 2 days. 

I talked about it with trusted therapists and healthcare friends, who all playfully laughed and said, “That makes so much sense. I can’t believe I didn’t see it sooner.” 

Then I got up the nerve to talk to my own therapist. We had just started working together and I had no idea how she would react. Truthfully, I was a bit terrified. It was the first thing in my life that made sense in a long time and I think I was nervous she would disagree. But, she didn’t. She was kind and supportive and while we agreed it fit, she suggested I seek out an official evaluation.

Initially, I decided I would leave it at that. Self-diagnosis was enough for me.

And then it wasn’t. 

Getting An Official Diagnosis

Over the next few weeks, as I processed this whole new understanding of myself, I couldn’t shake the feeling of needing to know for sure. If I had worked the first seven years of my counseling career primarily with neurodivergent people, how did I miss this in myself? How did none of my former colleagues or therapists see this? I found story after story of counselors just like me. I laughed to myself - it even seems like this is a common career choice of late-diagnosed autistic people. But it didn’t matter, I needed the outside perspective. I had to do an evaluation. 

There are so many reasons why seeking an official diagnosis is inaccessible for people: cost, waiting lists, lack of educated and competent providers, outdated & biased diagnostic criteria….I could keep going. It could be a blog post by itself.

I scoured the internet, trying to find a provider that specialized in high-masking over achieving 30-something-year-old women. It felt impossible. I found provider after provider using the same testing they would give a 4-year-old boy. I knew that wasn’t going to be a good fit for me. Eventually, I stumbled upon Wilderwood Equine Therapy. They are a Non-Profit working to validate a new diagnostic measure for late-diagnosed women and are neurodivergent themselves. 

When they read my results I started to cry. It was like the earth stopped spinning for a moment and everything slowed down.

Autism Spectrum 

Wow. 

Relief. 

Validation. 

Hope. 

It all hit me. I finally had the answers to years of sensory overload, social struggles, and repeated burnout. There wasn’t something fundamentally wrong with me like I had thought for so long, my brain just works differently. 

Finding New Meaning - Rewriting My Narrative

A late diagnosis can feel like flipping a chapter in your life story, and for me, that’s exactly what it’s like. I have a life pre-autism diagnosis and post, and they are two completely different worlds. 

Things that I used to see as social failures had a new context. I realized that the anxiety that I could never seem to get under control wasn’t anxiety - it was sensory overload. No amount of CBT and challenging my thoughts were going to change the fact that I could hear the electricity from the outlet 50 feet away. But earplugs do.

I was able to start to look back on my life and rewrite my narrative. Autism gave my experiences new context, new understanding, and a framework for a whole lot of self-compassion that I didn’t have before.

I thought back to my early career. I LOVED working with autistic people. They were my favorite clients. I valued their honesty, their appreciation for the world,  and their unique way of experiencing things. Not only did I realize I loved it so much because I was literally with my people, but I suddenly was able to look at my own struggles with the same appreciation and light that I always saw in my clients. It was empowering and refreshing. 

A good friend who was late diagnosed a few years prior told me that when she learned she was autistic and told me her diagnosis, I joked that I liked her better now. She told me to extend the same love to myself. And I did.

Finding Support 

As affirming and positive an experience learning I was autistic was for me, it’s also been a wild ride of emotions and processing and I haven’t done it without help. Building a network of support is important regardless of where you are in the diagnostic journey. 

Some things I found helpful: 

• Therapy
  A quality therapist or coach can help you better understand how autism impacts your life and develop strategies tailored to your needs. My own therapist has been instrumental in helping me make sense of my 39 years on this planet NOT knowing I was autistic and what it means for me moving forward.

• Community
  Connecting with other autistic individuals through online support groups, forums, and social media can be incredibly validating and affirming. Talk to your friends - you may find out you have more ND people in your life than you thought. 

• Accommodations
  Advocating for yourself at work, school, or even at home or in social settings can make a huge difference in day-to-day life. Using earplugs or headphones and a fidget toy everywhere I go and giving myself permission to step out if I need it has made a huge impact on my ability to function without burning out. 

Embracing Your Autistic Identity - Unmasking 

A late diagnosis isn’t about changing who you are. Instead, it’s about understanding and embracing your true and authentic self. It’s celebrating your strengths and finding ways to challenge your challenges. For many of us, we’ve spent years in survival mode putting on a mask to fit in and get by. 

Once we learn we are autistic, we can give ourselves permission to unmask and truly live as who we are, embracing our autistic unique selves. 

Things that have helped me to explore and embrace my autistic identity:

• Self-education
  Books, articles, videos, whatever learning style works best for you. I’ve linked some of my favorite resources below. 

• Self-compassion
  Be kind to yourself. Your brain works differently - awesome! That’s something to be celebrated. 

• Creative expression & the expressive arts
  Use art, music, writing, poetry, video making, or any other creative outlet to express your experiences and emotions. This can be a therapeutic outlet and help you to communicate your journey to others - something that’s often difficult for us autistic folk.

Final Thoughts 

Receiving an autism diagnosis later in life can be overwhelming and full of emotions, but it’s also a significant milestone and just the beginning of a new journey. It’s an opportunity to explore and understand yourself more deeply, connect with others who are similar, and live as your authentic self. 

If you suspect you might be neurodivergent and want to explore it further, or have been recently diagnosed and are looking for support from an autistic provider check out our neurodivergent affirming therapy and coaching today.

Favorite Resources

The Autistic Survival Guide to Therapy by Steph Jones
Wilderwood Equine Therapy
Mom on the Spectrum
Unmasking Autism by Devon Price PhD
Is This Autism? by Donna Henderson and Sarah Wayland with Jamell White