Undiagnosed Autism: How Autistic Adults Go Unnoticed

The fact that you said you can pay attention better without eye contact... I totally get that. My friend stopped talking about their trip because I wasn't making eye contact... I had to tell them that me not making eye contact is actually a huge compliment, it means I am super comfortable and no longer masking

I am just realizing that I am autistic. It has answered so many of my questions about being the way I am. I learned how to mask and tried to be the person I thought someone else thought I should be. My autistic traits went unnoticed or just labeled as me being a sensitive child. In the 90’s raised by parents that did not know anything about it, they saw it as tantrums and me being spoiled…. Yeah, no.

In Norway probably 95 % of the autistic people are undiagnosed/ unnoticed. We are faaar behind the US, Australia, UK Here most people, authorities and health personnel still use the term Asperger and think that autistic people are non verbal and hardly able to work. In reality there are thousands of autistic people all over. And most of them have no clue why they’re struggling. I realized I’m autistic last year, age 63, after watching videos like this. I really wish I knew 45 years ago.

One of the main reasons I remain undiagnosed to this day is that I hate going to/talking to doctors/therapists so I just avoid it. It's hard to get a diagnosis if you refuse to speak to those that diagnose.

50+ years undiagnosed due to coping skills developed from highly-introspective analyses of how things seemed to work around me combined with way too many self-preservation skills from childhood trauma. It all adds up to an interesting tool chest of skills for adapting to the world (and people) around me.

Also... women and girls. We are often misdiagnosed as being bipolar or having bpd or having anxiety/depression and that's it. The misconception that autism occurs more often in men and all the symptoms being defined by the male expression has hurt women tremendously and so lately that is becoming more clear and we're seeing more diagnoses of women. In addition, people who are non-binary or have other gender expressions are also being more studied and considered, when in the past the therapist may have only focused on their gender identity and not on their neurotype.

Reasons why I think I went undiagnosed: 1. My ADHD hides the Autism, which hides the ADHD. 2. My siblings and parents are all NT. As the middle of 3, I think I was perfectly positioned to learn what "normal" behavior looked like, according to my age. 3. Media provides an excellent source for an autistic person to learn masking techniques that further hides the autism. 4. This is more personal, but I've always struggled with asking for help, even when I needed it. Thus, in school, I was the quiet kid who was praised for my independence. Nobody looks at a student like me and thinks to ask what's going on inside my head. Obedient, studious, and self-driven, I wasn't a problem. Thus, nobody suspected I was struggling. I was Dx with ADHD at 23, ASD at 32. I met with dozens of mental health professionals between those years (receiving several wrong Dx), and nobody caught it because they weren't asking the right questions because, like you said, non-autistics don't know much, if anything, about ASD.

I was recently diagnosed at 43, very adept masker, and very high IQ… I was abused by a coach at college and was never the same, but always suspected ptsd. I was forced into working at restaurants after the abuse derailed my college plans and I was avoiding the hard science classes where I belonged, because they reminded me of the semester I was abused. I couldn’t ever hold down a job for very long, but I must have worked in 20 restaurants as a waitress and bartender, and I learned to mask like a ninja. No one would ever have guessed, except when I would sometimes miss jokes, but I would play it off as being a dumb blonde. Forcing myself to go to each and every shift was like a nightmare. Sometimes once I got there it would be busy enough that I didn’t have to talk to anyone and there was an amazing peace that I found in the chaos. When I was a high volume bartender for a short time I was finally ok. I would wear earplugs and lose myself in the music, and it was too loud to hold a conversation, and I had a barrier between me and the rest of the club, and I could be “part” of a social situation that I would have never been able to navigate if I was on the other side of the bar. Unfortunately it was short lived, and life has been an immense struggle. Diagnosis has helped me understand that I’m not weak or incapable, just different.

I wrote my book Living With Autism Undiagnosed to help other undiagnosed autistics recognize their autism, and to help the rest of the world understand us better.

I think a reason you missed is "because you're old". I'm a senior (female) and when I was young in the 60s, there were no 'isms' - just 'weirdos'. At various points in my first three decades, I was referred to professionals, singled out at school for being abnormal, or sought out therapy as an adult, but there was no awareness at all of things commonly diagnosed today (autism, ADHD etc.) so I never received any useful support. I had no idea what was 'wrong' with me until family members started to joke that I was like Sheldon on Big Bang Theory (I am), and that eventually in the long term led to self-diagnosis after I had retired (after periods of mistakenly identifying with labels like 'mild depression', Highly Sensitive, Introvert, short-tempered etc.). It seems so obvious now - I wish I had known during my working years because it would have made such a difference.

Plus, when you're seen as smart, people write off everything you do as just being a weird smart person who should stop complaining about your struggles.

An angle that you didn't mention is that I believe Autism and ADHD both have an inherited component. So I grew up in a neurodivergent household, that was my 'normal' and I didn't know or understand how different I was until later in life. At school the bullying was a tell; that and being a quiet studious type meant I got praise for my independence and maturity. No one noticed or at least commented on my anxiety or my lack of social skills. Later I went on to male dominated and fairly high ND careers in engineering and computer science, so again kind of stayed in the community. I remember Dad encouraging us to 'people watch'; that is totally code for 'how to learn to mask'!

I suspect one reason for going undiagnosed is that many of the challenges stem from experiencing more extreme versions of "normal" human experiences. For example messages like "everyone feels anxious sometimes" do not take into account the degree or frequency of anxiety.

Recently diagnosed ASD at age 62. My autism went undiagnosed because 1) I’m female and 2)my ADHD hyperactivity and executive functioning problems were much more noticeable and my dyslexia just made me seem low IQ at school because of my extremely slow reading speed and terrible spelling. But my inability to comprehend social rules & make friends along with my general weirdness led to constantly being bullied in school, workplaces and even in church communities! Once I got on ADHD meds at age 41, the autistic traits became more apparent. Even being organized and less impulsive and less hyper, I still had problems with relationships especially with bosses and coworkers so I never kept a job for more than 2 years (or 4 years if very part time). Doing great now with my Air Bnb business!!! No boss, no coworkers but they gave me a mentor to contact when I need help. Perfect!!

I turned 60 this year and have no real hope of getting a professional diagnosis however the community here has been invaluable to me in my journey of self help and discovery. Burnout have got me in it’s grip right now and honestly I feel I lost all ability to mask so I’m hiding out at home unless I absolutely have to leave. Thanks to all sharing their experiences to help others. 💖✨

I was diagnosed at 58 when I was unable to mask as I had before. I had known something was wrong but was able to hide it for many years. But as I grew older, I had difficulty coping, my anxiety grew worse and finally I sought treatment. It took awhile but was finally accurately diagnosed.

This comments section is comforting to read, we are not alone 🐾🐾

I'm turning 40 this year, and I've only started my dive into neurodivergence research about a year ago. I always knew I was different and I couldn't explain my struggles to myself, nor why all the self-help books and methods I looked into weren't actually helping. Learning properly about ASD and ADHD has answered so many lifelong questions and has already led to so much improvement over the past year! So I'd say that for me, the main reason why I flew under the radar for so long would be lack of awareness. If I had a proper awareness of what ADHD and ASD were, I would have identified it in myself much sooner. When I was a child, ADHD and ASD were considered male-only disorders - as an academically gifted, non-dusruptive girl, there was no reason for me to be screened for anything. High IQ and the combination of ADHD/ASD (which compensated for each other in some areas) helped me adapt to a neurotypical world - but even though I could function and be independent, I could never thrive. I was socially unhappy and constantly exhausted/ill. Learning about and understanding my neurodivergence has helped me take care of myself better because I understand my needs now, and I don't feel like I'm a failure. I was just a fridge trying to be a toaster, but now I have the correct manual =)

I went undiagnosed for 50 years because - I didn't know about autism, my family didn't know about autism, healthcare professionals may have known - but by the time I was seeking help I was disinclined to engage with them and there seemed to be simple pill-based treatments for mental health symptoms like depression and anxiety which made their ineffectiveness easy to ignore. Finally, to get diagnosed cost me thousands of pounds and, at 50+ and with no prospect of receiving any kind of support there seemed to be no strong reason to pay that money.

Self-diagnosed here. A major hurdle, at least in the US, is the healthcare system. You said you've been through lots of therapists before you found one that diagnosed you correctly. It's much more difficult to get a diagnosis and support when you're low income and the only access to healthcare you have is a general practitioner every few years that you have to pay out of pocket for.