Autistic Diagnosis in my 40's - my experience of the assessment process

Also a late-diagnosed autistic woman. I think many of us only get a diagnosis when we burn out or have some kind of breakdown. It does help to know what's at the root of the issues though. Thanks for this.

I’m not a woman but I was diagnosed a few months ago at 38. I also had multiple depressions and constant anxiety issues. The diagnosis was extremely hard on me: I had a deep depression where I couldn’t get out of bed for several weeks. I just kept thinking about how my life would have been if I had known earlier. I also realized I was abused/gaslighted by the majority of people in my life. Since dumping these narcissistic losers I’m much happier.

Diagnosed at 66 after a lifetime of difficulty, 3 husbands, and two children who don’t really speak to me…. I’d love to help others avoid my experiences… thank you for your bravery!

You are so lovely. I am 46 years old and because of being almost 2 years into a “depression” I finally came to the realization that there was so much more going on than meets the eye. I have not been diagnosed, but I now know that I am in Autistic burnout. I realized this time that what I was experiencing was so beyond previous depression bouts because of the severity of what was happening to me. I used language such as I feel like I am regressing or going backwards as I cannot do or manage how I have in the past. Like you, I have achieved success, friends, and put on a flawless mask all my life. Like a chameleon, I could fit into any situation….until I couldn’t. I started to become super sensitive to loud noises, bright lights, touch - pretty much all my senses were screaming for less. Despite the fact that I have what looks on paper to be a wonderful life (and one I am very grateful for) my thoughts have been desperate. Feeling like I can’t do this anymore, everything is too hard, I can’t be the me I have been anymore. Absolute and complete exhaustion. No energy to do things I once loved. Wanting absolutely nothing but silence and my bed. It has felt so hopeless as the experience of joy and happiness and good times seem so far away (2 years into this). I have only just become aware of high masking late adult ASD diagnosis in females in the last 2 weeks. After all I have learned so far I already see myself very clearly in the information. So now at least there is a glimmer of light - hope that now maybe I can navigate this and get help to move forward. Thank you for sharing your story as it is also my story. I was diagnosed at a young age with generalized anxiety disorder as well. Medicated on and off for 20 years (now completely off as I knew it wasn’t the answer for me). Additional diagnosis of clinical depression. Completely missed as I had a stunning ability to appear like most people. Sending lots of love and gratitude your way. You are a beautiful human ❤

35 years of hell. 2 years of looking into this. I've taken every ASD test I could find over the last 2 years and next Tue as a 35-year-old man I will be going several hundred KM away from where I live. To see someone who's an expert in this and speaks my language for my assessment. I can't imagine how it must have felt to have been knocked back the first time.

I am 41 years old and today was the first day I realized I’m autistic. Thank you for your vulnerability and putting yourself out there and making me feel normal.

I found this video after something VERY similar happened to me – just three days ago I went for an NHS assessment as a person in middle age. After a two-hour consultation, I was found ‘negative’ in diagnosis.
Key reasons given were ability to make eye contact, to hold a conversation (ask questions of the other person, observe turn-taking), and to maintain relationships (I was married, have children, and generally get on with my colleagues). None of this was explored in terms of how I have learnt to do these things as I’ve grown older – they did not come easily when younger, and socializing, eye contact, etc. and still tire me.
I was given questionnaires prior to the consultation and scored ‘highly’, some of these also completed by family members, but these were apparently not brought to bear.
Masking was not mentioned, though I did say I had learnt a lot of the skills into adulthood.
By the end, I also found the experience of consultation with a senior practitioner nurse ‘embarrassing and belittling’, feeling I had wasted their time, and also found it lacking in depth.
I felt a specific, narrow set of criteria were applied. Even a specific gesture was used – flapping a hand in front of the face (I make – and used to make more often – repetitive gestures, which may or may not be ‘stimming’, just not that specific one).
A lot of other things I said were also seemingly ‘ignored’, e.g. sensory challenges; problems forming and maintaining friendships and social anxiety; feelings of difference that led to bullying in childhood and adulthood; childhood challenges of isolation, school refusal, etc.; being poor at turn-taking without effort; difficulties with change and lack of order…
I have no idea whether I am autistic or not, but am left without confidence in the diagnostic process and confused. I cannot justify the cost of private diagnosis.
I don't think the process is set up for adults.
Thanks for the video. Though also generally an NHS fan, it's interesting to know this is a common experience.

Male, diagnosed at 55, along with clinical depression, after a work dispute. My diagnosis didn't really help me much in a practical sense. But I understand myself better as a result. We have to National Disability Insurance Scheme (NDIS) in Australia. It's of little use for people with ASD, especially oldies like me. I'm now 64 and semi retired. Never give up. We're all worthwhile people, even if others can't see it. My son is on the spectrum and my wife is a saint for putting up with us.

I know where you are coming from. I was 60 had my burn out, lost my job, my family. I live as a recluse. I was told I had depression, but always new there was more to it. The more I research it the more I see how this has destroyed my life over the years. I have been jumping through hoops for assessment for 3 years. The nhs is woefully understaffed for this sort of thing. The hardest thing is to look back and realise that though I seemed normal. The me inside always pushed me down the wrong track.

Science fiction & fantasy fandom (which heavily overlaps computers and sciences) is rife with the neurodivergent. Welcome to the club, and thank you!

I'm 44 and was recently diagnosed Autistic, I'm also going through burnout. When I was 7 I was diagnosed with ADHD and have been living my life thinking all my issues were from that. As the process of finding out was unraveling hints and similarities I became increasingly obsessed with figuring it out, especially now since my symptoms were that of other autistics giving their lived stories on youtube. I was first diagnosed by my psychiatrist, then confirmed at a diagnostic center later on. Through the whole process, it's been really emotional, especially as all the puzzle pieces of my life are now clicking together and making sense. Thank you for telling your story, I found comfort in it.

Thank you so much for this video, it obviously was not easy. Aged 57 myself, I am just starting the process with the NHS. Have been told I may have to wait 5 years for a diagnosis. Also, close friends say no way, as I was a creative artist for years and ... can talk to people. I have to explain that last is because I had to learn the hard way to mask up over 50 odd (very odd) years. I ramble, but thank you thank you. All the very best for the future.

Thank you so much for sharing your story. I was diagnosed as being on the autism spectrum at age 35, about seven years ago. In the United States, it is horribly difficult for adults to get autism evaluations. A lot of places only test and diagnose kids. I was very fortunate to get an assessment through Vocational Rehabilitation (service that helps disabled people get employment) where my counselor was curious, I think, about my behavioral and emotional quirks, and referred me to a psychologist for a very thorough evaluation. It's made a lot of difference for me to have this diagnosis. I never really thought I was autistic, but it makes so much sense. Autism truly is a spectrum, and I think people still have unfortunate stereotypical ideas about how autistic people behave.

I feel your pain. I am a 44 year old male and waiting for a private autism assessment. It's sad that it's taken so long and so many wrong/lazy diagnosis from the NHS which largely is a real disappointment with the NHS. I went through the NHS process also, it was absolutely disgusting, really unprofessional and like you totally unfit for purpose

I'm so glad the diagnosis came through in the end - after we last spoke in Dublin, I was so angry on your behalf with how you'd been rebuffed the first time round. The process is utterly gruelling even when they get it right. The effort involved in social masking is massive, and the fact you were penalised for your skill in applying it was and is appalling. It's freeing and transformative to have the security of the diagnosis. I still struggle to function as an adult human, but at least it's a start

Thank you for sharing your story. My chronic anxiety and depression may be misdiagnosed. Learning about others gives us courage to get more help and remember we are not alone. Hugs!

Hi! 👋 I'm about to turn 47. Have suffered from major depression for the past 6 years, though only finally treated for the past 2. My 15 year old daughter is in the process of getting assessed, and that's how 2 months ago I realized I am most likely autistic. I'm in Canada, and like the UK NHS, our healthcare system is very uninformed when it comes to autism in older women. At first my psychiatrist out right rejected the idea, because I understand sarcasm, don't have obvious stims, and understand expressions like "don't throw stones at glass houses". He literally did a 5 minute assessment, lol. I then explained all the reason why I think I am, and he agreed that I might be, but I likely wouldn't meet diagnostic criteria, and even if I am, it wouldn't change anything. By my next appointment, a month later, I had consumed at least 100 hours (if not more) of YouTube content on autism, ranging from #actuallyautistic creators, to medical seminars for healthcare professionals presented by autism researchers. I realized many things about myself, including my difficulty with advocating for myself, and this time I was prepared with an extensive written list of grievances about my treatment. I told him it should have been a huge red flag that I had systematically tracked my moods with my cycles, and tracked how weather affected my mental health. I told him how I felt he was treating me like yet another middle aged woman going through a midlife crisis, and that just throwing medication at my depression without addressing the underlying causes is a terrible way to treat mental illness. I don't know whether it was my systematic assault on his ego, or further analysis of my specific traits, but he decided to add "suspected autism" to my medical chart so that it is there for any medical professional I end up needing to work with in the future. He told me that I was very high functioning, which I laughed at and said 'if I was so high functioning, I wouldn't be needing his care' I finally realized that the last 6 years were caused by autistic burnout, and now I understand which parts of my life caused it and how I can make adjustments to recover and prevent it in the future. I know some people feel upset when they learn they might be autistic, but for me it was a true gift! I finally wasn't broken. My life made sense! All the pieces fell into place and I no longer felt hopeless. I will likely still seek a formal diagnosis, because despite believing with every fibre of my body that I am autistic, I feel I need that piece of paper as armor in case anyone ever questions it again. It's lovely to meet you and I hope to see more videos from you :-)

I am also a late-diagnosed autistic woman. I'm also going through burnout and I was also misdiagnosed with anxiety disorder. During my first assessment I was told that I am not autistic (similar reasons like you). It seems the male psychiatrist only knew about the male autism stereotypes and he even didn’t notice all my (autistic) issues. About a year later I was tested again. I went to a psychiatrist who is specialized in testing adults and had lots of experience in testing adult women. I have been diagnosed as autistic at the age 49. During this assessment the psychiatrist assumed that I have ADHD too. Now I am waiting for this assessment. Thank you so much for sharing your experience.

I am 40 years old and I have recently been diagnosed as autistic. I am still trying work through this diagnosis for myself after having believed that I was living with functional depression for most of my life. It is a deep and very personal journey. Thank you for your vulnerability.

Thank you for sharing this. I am 68 years old and very recently discovered that I have autism. Living in Oregon, USA, the cost of a formal diagnosis is prohibitive. But I did get much help and encouragement from all over, in self-diagnosing. I am also an author of sci-fi, fantasy books, currently writing my first screenplay. Learning this about myself has been life altering in a most wonderful way. You are giving me the confidence to share my spectrum stuff on my youtube channel as well. Thank you, thank you for sharing!