Late Diagnosed with Autism: What I Wish Someone Had Told Me

I got diagnosed at the age of 25. On March 9th and on March 15th, I turned 26. I was diagnosed later in life. I wasn’t diagnosed at age 6 or 10. When I first heard: “I may suspect you’re on the Autism Spectrum”, I didn’t know what to think. Because, the psychologist added: “Don’t take this personally”. Why would I take this personally, I wondered. What was so bad or worrying about Autism?
It wasn’t until I actually got diagnosed that I felt the confusion disappear. I felt relief. I was relieved that I knew why I was so different. But … Despite my diagnosis, here’s what nobody told me.

Things About the Diagnosis Process Itself

Although the process felt like I was being ridiculed, I had no idea what they were actually testing.
They were testing my IQ, my memory (long- and short-term) and they were seeing how narrow or wide minded I was when it came to having interests. (Turns out, True Crime is a special interest of mine to a certain extent)

When I looked online, prior to getting tested, I related to most traits listed. I was like: “Yes! This is me.” But, I was the only one going down this rabbit hole. I was the only one actually looking it up. I remember being told: “We’re not 100% certain you’re on the Autism Spectrum, so don’t start telling people you are yet”. Which was true. I wasn’t diagnosed, but I was more and more certain that I was going to be diagnosed. Then, I would have it, the report, in my hands saying I was Autistic.

But, others traits didn’t align with me. I was diagnosed with Autism, Type: Aspergers. Which I don’t understand is still a result since in 2013, people have given Autism, an umbrella term: ASD (Autism Spectrum Disorder). So Aspergers was no longer something people should mention when diagnosing people. I do understand, however, that it would be easier to clarify.

However… Getting diagnosed isn’t the end of the world. In fact, it’s only the beginning. To a road of answers. Scattered throughout your life.

Yet, not everyone will believe you, or take you seriously. If you’ve been masking well, you especially won’t be taken seriously or be believed. “But you seem so normal”, so what if I do? It doesn’t erase the fact my brain processes information differently from yours. “But you don’t look Autistic at all”, are you kidding me? Autism isn’t like Down Syndrome. Down Syndrome is visible, Autism is not. It’s a spectrum disorder.

What if they don’t believe you, though? What if they need to ‘see’ you stim? What if they need to see you rock back and forth and get lost into your special interest. Hyper-focusing on a subject for hours and then losing track of time.
What if they don’t believe you? Well, I honestly don’t know. I don’t know how to handle people who don’t believe you. I usually don’t really tell people I’m Autistic, unless I trust them with that information.

Once I got diagnosed, no one gave me an ‘Autism 101’ book. I didn’t know how navigate my new world.
There was no help in sending out emails or making telephone calls with you, in order to make sure your question was heard and people woudl get back to you quickly. There was none of that. I did have 70 free psychologist conversations to get me sorted, but I felt like I got ghosted after 10 or 20 conversations. They were once a month or once every 2 weeks and after a while, I got zero response. So I was on my own. Navigating a new world I didn’t understand.

What was worse… I didn’t know I was allowed to even read my diagnosis report. So, I didn’t know what they were recommending me to get when it came to help. From a psychologist, psychiatrist and some intense course or therapy to get more independent. If that was too intense I could wait a while before committing to it.

And to make matters worse, it took me until my late 20’s and a rejection of my social security benefits, that I started to get to contacting people and organisations (such as non-profits) to get the help that I needed.
But I didn’t realise that waiting list, after waiting list was tough. It’s not easy to get the help as an adult. Because as an adult, you’re supposed to know. You’re supposed to be independent. Right?
But, no… I was alone. Despite my mom helping me along the way.

Things About Life After Diagnosis

People on the Autism Spectrum, are known to mask. Yet, we can’t just stop masking. It takes time to recognise what is a mask and what isn’t. I still haven’t unlearned to mask, because I still haven’t learned what a mask is when it comes to my corner of the Spectrum.

And when you unmask, there’s this fear of being “too autistic”. You’ll stand out like a sore thumb, among a crowded sea of people, who aren’t on the Spectrum. Because what do they know? Really…

I haven’t learned to unmask, like I said before. Once I do, I do fear that I will be “too autistic” for the world I’m living in. That people will judge me. For who I really am. Which is a woman, who just wants to be herself.

Because just like yours, my life had changed. My life took a turn. It wasn’t a huge question mark anymore, it was a different life. A life, now, struggling with Autism, ADHD, Anxiety. Even, struggling with waiting lists.
Something I often started wondering was: “what if I got diagnosed earlier?” Would I have been helped, earlier?
Would I still be struggling with waiting lists? I’m still waiting for most accommodations. Yet, I have gotten medication. I have medication to help me make my life a little bit easier.
But, I have struggled.

I did struggle, a lot. I had no support system before I got diagnosed. I wanted to study literature. I wanted to study English and Biology, to teach kids in high school. All my dreams, shattered the older I got.

But that’s ok, because you’ll find dreams and goals that are better. Because, they’ll match you, as a person more. A lot more!

By finding yourself, and who you are as a person, may change your relationships with the people around you.
Because your relationships will change. Some of them won’t accept the diagnosis, or you. Others may treat you differently. Some may treat you like you’re porcelain, easy to break. They’ll mother you, keep you almost isolated from the outside world and all its ups and downs. When that’s exactly what you really need, in order to find out who you are. Facing the outside world, will help shape you as a person and keeping anyone from that experience is harmful to the development of any person. But, if you find out that people will treat you differently and won’t accept you for who you are… Well then there’s only one thing you can do. Find your real support system.

This is where other people on the Spectrum come in. Connecting with likeminded people has always been a positive thing and that is true for people on the Spectrum as well. Connecting with fellow Autistic people cna work wonders for people on the Spectrum. Why? Because they can relate to you. Sure, Autism is different for everyone, but it doesn’t mean others can’t relate to your struggles.
Even when offline communities aren’t your cup of tea, you can often find online communities where you can share your story and find a sense of belonging.

For me? It has been two subreddits or communities on Reddit. r/AutismInWomen and r/AuDHDWomen are two of the most welcoming communities for women on the Spectrum. Sure, not everyone is as kind. But most of them are.
What has also helped me is the 18+ or adult community on Tumblr. Yes, Tumblr. A lot of people who are young and in fandom spaces are present on Tumblr. But also adults. While most resources are focused on children and teenagers, a community like the one I’m in, focuses itself on adults.

Because, you’re allowed to find your own space. Your people. While also being angry at the system.
You have to DIY your own help, basically. All because of a lack of general support. Or because of a lack of educated people and professionals in the healthcare system.

I have been more so disappointed in the system.
Because, I had no idea I could look for help by simply doing a Google search. Let alone, by going to a psychiatrist.
I had no idea that I had struggle for 5 years trying to figure out what was even available for me. Because, I really had no idea what was possible!
So, if people had more ‘starter kits’ available, newly diagnosed people wouldn’t be struggling as much.

Things That Actually Help

While professional help is ok, you don’t need their permission to live your life your way.
The best things you can get for yourself are sensory tools (think: fidget spinners), routines and setting your boundaries with all the people in your life.

But aside from that, you can and should celebrate your small wins. Not just the big ones.
You don’t have to get up at 5:00 AM everyday to start your day right, and be productive. No, you don’t need to be “productive”. Focusing on 1 task at a time is already being productive enough. Understanding yourself and who you are as a person behind the mask, is already progress.

So celebrate those small goals. Celebrate the big ones. Celebrate all the wins!

Conclusion

If you were late diagnosed with autism, you’re not alone. Women are often misdiagnosed because they have learned to mask well and mask better over the years. They copy behavior that’s deemed acceptable. Because once it’s deemed acceptable, it’ll be acceptable forever, no?

While life won’t turn out to be perfect once you get the help you need, it’ll certainly become easier. A lot easier.
Because you’re building the the support you need as an adult with an Autism diagnosis.

But, what would you add to this list?
I would add…

Life won’t be perfect, life will be tough. For a while you’ll be struggling, but once you’re getting the help you deserve and need, your life will become a lot easier.