Late-diagnosis and Learning my neurotype

This post is a bit uncomfortable, but also freeing in a way. I have this blog to be honest with myself, so this is something that I don’t want to hide.

My last post talked about my neuropsych evaluation and my language disorder diagnosis. I had shared that I was getting referred for another assessment to look a bit deeper into things. I got more answers on October 17th, when I was diagnosed autism spectrum disorder. People are usually diagnosed as children, so you can imagine how this might feel to learn this in your mid-late 20’s. Actually.. there isn’t just one feeling.

I’ll be honest, I had done a lot of research for months once this was suspected. I did not understand how I could possibly be autistic when my understanding of what autism looked like was based on stereotypical presentations and those with higher support needs than me. Knowing autism stereotypes can be beneficial to identify some people who present with commonly known characteristics, but for others it can be harmful and lead to a missed diagnosis. It is a spectrum because when you know one autistic person, you literally know one autistic person.

When it was disclosed to me that I had ASD, I was asked how I was feeling. I didn’t know. I had done my research to prepare myself for the possibility, but I still had no idea how I was supposed to feel.

What I learned is that autism (and even ADHD) is much harder to diagnose in girls. One reason for this is because it can present differently, and another reason is that girls & women are more likely to mask their behaviors and struggles to fit social norms/expectations.

Of course my diagnosis is happening at a time where autism is being taken both more and less seriously. I don’t watch TikTok, but I hear more and more people are being diagnosed or are suspecting they are autistic. I see this a few ways. I see this as just like any misunderstood diagnosis, when more research comes out and people learn more about it, of course diagnoses increase. We saw it even with covid, or endometriosis. Social media can be educational just as it is entertainment. When someone shares their story, others pay attention and relate. However, there are also people who make jokes about autism and think “well maybe I’m autistic because I relate to this meme, trait, etc”.

There is a difference between someone relating and saying “well everyone is a little autistic”, to someone who relates and then spends a great amount of time researching, reading books, and seeking out professionals. It’s not just about memes, it can create challenges in one’s life. No, not everyone is a little autistic.

Why am I sharing this? The belief that autism is becoming a “trend” is making it harder for people who are diagnosed to be taken seriously. I am looking back at my life and sitting with the fact that things I could have gotten support around were missed. Yet, I have an incredible amount of imposter syndrome for not meeting stereotypes or others believing you have to “look autistic”. It’s easy to minimize my struggles when I do not struggle immensely in every way.

I wrote in a previous post that this was hard for one provider to confirm because I also have trauma. This provider was particularly trained in trauma, so it made sense she would see things through this lens only. I needed to find the right professional who could adequately explain why my results showed autism, and to explain how trauma looks alike and different from autism. I was told both were true for me.

A psychologist told me that due to the fact that I was quiet and “well-behaved”, a lot of my struggles were likely missed in school. However, for me, I knew they were there. Growing up I had sensory sensitivities and shutdowns. I had social struggles and anxieties despite having friends. I had strong special interests and hyper fixations I kept to myself. I was bullied and better in low maintenance friendships where we were okay not talking every day. I had a strong need for routine and order, which also brought me strengths such as being detail-oriented and great at picking up on patterns. I would often find myself in situations of misunderstanding and miscommunication. As a kid I would be told I’m stubborn to apologize, but I often didn’t understand what I did or why I needed to. Or I would be unintentionally irritable because I was experiencing sensory overload. My facial expressions were either very easy to read, or really hard. For years I’ve been told I look sad, mad, or I’ll be asked what was wrong. If I was social and smiley that was normal, but if I became silent and in my own head people were concerned. I didn’t know why my resting face was so confusing for others, when I was just being myself. I didn’t know why I was told I was giving a tone or attitude, when I didn’t feel like I was. I had bigger emotional responses to change. I would get upset if I was interrupted when I was very focused on something. I wanted things to be done the way I wanted them. My mom would tell me that as a child there were times where she and my grandma would say my name, and I had a delayed response after being called multiple times. These are just some examples. There were many ways I met DSM criteria, and a lot of them presented in childhood.

Some of the traits I experience could apply to many others. Some people may say, “but you give eye contact.” However, if giving eye contact induces stress and energy and effort, that’s a problem. As a kid I would record myself or make faces in the mirror because I didn’t know how I came across to other people. I absorbed the communication and adapted to the behaviors of others. I gathered my sense of humor from characters I loved on tv. People in my life knew I could be shy and anxious, but I was also called animated and silly depending on my comfort zone. I felt that there were two versions of me and one others didn’t understand the way that I did.

When you spend a lot of time telling others “I feel different” or “something is wrong with me” and they assure you that you’re okay the way you are, their good intentions can often miss what you are trying to communicate. I didn’t mean that I was inherently flawed or broken. I was trying to communicate that things felt harder than they should be. Sometimes what people see, is very different than what is going on inside. I am the only one in my body.

I often love my quirks and differences. I’m not just trying to focus on my difficulties here. Being my unique self has led me to find some of the most true and genuine friends, and people I can relate to. I know what makes me happy and I have held on to those things my entire life. I challenge myself despite things not being easy. I prove to myself I can do many things. Though sometimes, I wish I knew I didn’t always have to try to leave my comfort zone. Sometimes it hurts me more than it helps me grow.

In my life now, I have a full time job, a serious relationship, and I am independent and on top of things. I thrive in my routine, so people don’t assume otherwise. However, when my routine changes I have emotional breakdowns or depression.

I originally sought testing because despite me doing well in many areas, I also struggle a lot at work and in my personal life. I knew I needed support. The people who notice this the most are my girlfriend, my supervisor at work, my closest friends, and my therapist of course. When I’m too overwhelmed or struggle with someone misunderstanding my words, my feelings grow so intense I feel like I could explode. It’s like I’m speaking another language. I’ve thrown things, I’ve unintentionally hurt myself, I’ve had full meltdowns. I will spend hours sitting on the shower floor. It’s not depression, it’s an entirely different thing. As a kid I turned everything inward, and as an adult I’m noticing myself handling things in the opposite way. If you don’t see me every day, I can look like I’m thriving.

Being diagnosed with autism doesn’t mean I need fixing. There isn’t anything to fix. This is just how I am and how my brain works. However, a diagnosis means finding the right support. I’ve already been making adjustments in the way I do things or accommodate myself. Even changes that feel so small have actually made a huge difference. Maybe I will do a post on that too.

One friend told me she believed I was autistic years ago. While pursuing the assessments, my old supervisor, my old roommate, and another friend believed I was as well. These people are either autistic themselves, work with people who are, or know someone who is.

Other people in my life don’t know as much, understandably. I for sure didn’t, and in many ways am still trying to learn. The small bunch I first shared this with have been supportive no matter their level of understanding.

Unfortunately, this diagnosis has made me so absorbed in what everyone else might think. Because of this, I haven’t taken the time to truly process how I feel about it. My therapist brought up the idea of me also working with an autism specialist/therapist so I can be educated in that way as well. I received this diagnosis and now I’m like “now what?” Who can I ask these questions to? It might be useful to have someone to check-in with once in a while who can help me understand autism better, as someone who is late-diagnosed. At the same time, I don’t want to be overwhelmed with more providers.

For some, a diagnosis/name doesn’t matter. For me, it always has. Whether it was my heart condition, endometriosis, arthritis, depression, ptsd- a name led me to the right support and guidance. Despite it taking a bit to truly accept this, I know that this is only a part of me. It’s still a part that matters a lot, and impacts how I think and see the world.

If it makes sense to me, that means I’ve completed a missing piece to my puzzle. I no longer need to ask the question “why am I like this?” I can’t explain how much that means to me to better understand myself. I’m having a lot more self-compassion.

Some things may always be hard, but if I can learn to make things a little easier, I will continue to be proud of the person I am and the person I will be.