So you’ve been late diagnosed as autistic, and it has shaken your world. What do you do?
When I got diagnosed, I knew that I wasn’t “normal”, but I didn’t have the right answers. It was “Learning Difficulties” this and “Special Needs” that. Everything was vague to the point I didn’t know what was wrong with me.
A diagnosis, for me was an answer that I can work towards understanding myself a lot more.
I am fully aware that everyone’s experience is different, so I’m gonna explain mainly my thoughts and experiences on a late autistic diagnosis.
2015 (The year of diagnosis) – 2018 (Acceptance)
The problem with a new diagnosis is that you wonder if everything you do normally, you start to question if it’s “your autism” or just your quirks. There’s also a fear that people may treat you differently now you are “autistic”. You’re still you, and your diagnosis doesn’t change that. It isn’t the end game. It’s actually just the beginning.
The beginning of new obstacles.
Here’s a list of a few experiences that’s happened to me from 2015 to now.
- I’ve become more aware of sensory sensitivities.
- I can tell the difference when I’m genuinely struggling because of my autistic mindset and when I’m just being a pain in the arse.
- Meltdowns and Shutdowns.
- Realising what my limitations are.
- Still stubborn as hell.
- My mindset is what I’ve got and I’d rather have that than living in a NT mindset.
- People shouting doesn’t always mean they are being mean.
- Burnout sucks.
- I’ve lived a life in where you have to “mask”. It sucked.
- I can finally tell people what’s wrong with me (or let my partner tell people on my behalf).
- Some tasks require more effort. I shouldn’t feel ashamed for it.
- Fight the fear! it’s worth it in the end.
- Life is short. Worrying about EVERYTHING just leads to despair.
- Ruts are normal. Being frustrated is also normal. However, fighting the negative emotions is a challenge!
- I need to keep busy and organised to an extent. This helps to make me feel productive and to give structure and meaning to my day.
I’m seen as quirky. A lot of my quirks can be related to me being autistic, such as various stims. I’m sure some quirks are just me wherever it’s autism or not. I can be considered shy to other people and a lot of the time, I find talking difficult. I keep getting my words jumbled to the point that it is gibberish. Quirks make people. It encourages neurodiversity. We all can be strange in our own ways. NT’s can have weird quirks that autistic’s may not understand, and vice versa. Why should society shame quirks that are not exclusively NT? It makes no sense.
2016-2017, those have better days, and I feel that they have helped shape my understanding of both my diagnosis and myself. I found more friends and communities, and a few negative personal curve-balls in life have made me realise what I am capable of (sadly, I occasionally I tend to panic/freak-out when these experiences randomly appear in my mind when I’m most calm, eg – falling asleep). I’ve also had a lot of self doubt as well in terms of my diagnosis (impostor syndrome) and my overall confidence.
Finding support can be tough when you are diagnosed later in life. It doesn’t help that there are few locations that help support adults in the spectrum. A lot of autistic’s feel isolated and can’t find their tribe or even support on what to do next. If you find one nearby, give it a try! Another method is to find online communities (Facebook can be a good start!) or autistic bloggers or vloggers. Wherever they were late diagnosed or not, here’s a list of a few to get you started. Each person has a different story!
- Agony Autie
- Neurodivergent Rebel
- The Autistic Advocate
- Do I Look Autistic Yet?
- Autistic Not Weird
- Jeanette Purkis
- Growing Up Aspie
I’m still discovering myself now. I think I feel more like myself compared to a few years ago. Autism is a spectrum. Just because you’re not a stereotype, doesn’t mean you’re not Autistic. It’s also not gender exclusive either. An experience of an autistic diagnosis depends the person, in terms of accepting a label. Some prefer not getting diagnosed, because a label can be also damaging in terms of society. People can be judgemental or change their overall opinion of you, even though you are still the same person. An autistic who is diagnosed or not are both valid. Everyone’s story is different.
Things will make more sense, on this journey called life. I’m not looking for a destination. A life with no chaos at all is something that drives me mad. I need a little bit of chaos to get me going. It gives me a drive to keep me motivated and to create goals.
I don’t plan to “fix” myself. I don’t need fixed. I am slowly shaping myself to who I want to be, both appearance and personality. In terms of improving myself, I want to be more balanced. Bad days happen, but If i can get through those, I can get through anything. We are not a missing puzzle piece, we are one of those wonky ones that still fit, but require more effort doing so.
For those out there still discovering yourself, what are you experiences with a late diagnosis? How has it impacted you as a person?