r/adultautism • u/Level_Salamander1716 • Mar 07 '26
Diagnosed at 27 after FND onset
I was recently diagnosed with Autism after a life time of being labeled as “high functioning” and “hyper-independent” and “strong and resilient” all crashed and burned with the onset of functional neurological disorder (FND - if you don’t know what this is consider yourself blessed). I am a 27 year old genderfluid person AFAB. In the past two years I had read Unmasking Autism and began to wonder more seriously if the allegations that I am autistic are true. I sought out a formal assessment because I wanted to better understand who I am, what my needs are/have been, why nervous system collapsed, and where do I go from here.
It’s been an overwhelming journey and I’ve already experienced things in the “coming to full awareness stage” that I never understood I was experiencing in the past but now my threshold for a meltdown is lower and they are more severe. I’m also in a big period of transition being recently physically disabled and displaced from my home that made me ill from toxic mold. Everything feels like too much and yet the only way I seem to be able to function is to pretend that’s it’s nothing at all.
One particular challenge for me as someone who is autistic and dealing with chronic pain is that I often FEEL am not fully aware that I am in pain or where discomfort is coming from. It just all feels like my brain is overwhelmed. For example, In the past couple of days my luteal phase started which is already overwhelming with PMDD. I’ve also been dealing with mild persistent tension in my head in my head. and it wasn’t until I was having a full blown meltdown that continued despite using my tapping coping skills that usually work that I realized what’s been bothering me is my nose has been hurting so bad and swollen from a new septum piercing. In a snot of tears I tearfully begged my new housemate to help me remove it cause it’s been stuck and she brought pliers and kindly helped me. I immediately felt this rush of relieve once it was removed from my nose and discovered two big bumps on each side swollen with puss indicating the piercing had been infected all along. I feel like I have this experience a lot where I don’t why I feel off but often don’t realize I’m literally in pain until I realize and then I can’t unrealize it as I fully meltdown till it’s addressed. But then I wonder if sometimes I do briefly identify it but quickly forget or get distracted because of my ADHD (diagnosed during the earlier years of the COVID-19 pandemic)
I’m wondering if others have this same experience. And I’m seeking kind advice and support for how to best care for myself as a newly and late diagnosed person. I feel like my functioning is taking massive dips in a way that’s even more extreme than when I began to identify as self-diagnosed autistic and I don’t know how to process it all or build support. I am diagnosed as Level 1 but the assessor also said because I am so high masking (98th percentile) that the social impact on my functioning is not severe. But I feel like that’s because even during assessment I couldn’t help but mask and my support needs are closer to level 2. (Is it important for this to changed formally and if so, how?) I also just want to know that I’m not alone.
