Undiagnosed autism in later life

[herblackwings]

I have not been officially diagnosed with autism but over the last few months I have come to realise that I may be autistic. I have always struggled socially and was always told I was too quiet, shy or even rude/abrupt. I was referred to a speech therapist as a young child due to selective mutism and later a child psychologist but it was never picked up as that was in the early 80's. I am now in my late 40's.

I suspect that my dad may be autistic and possibly my sister and her son too, but none of them are officially diagnosed and in the case of my dad it would make him angry/defensive if I mentioned it.

I have been having struggling lately, possibly due to perimenopause symptoms making me extra emotional. I'm not sure my partner understands and I don't feel I have anyone I can talk to about this.

I'm unsure whether seeking an assessment at this stage is worth it. Apparently the NHS waiting list in my area is 10 years.

I would like to hear from anyone else who was is still undiagnosed but suspects they may be autistic. How has it impacted you and how do you cope on a day to day basis. How does it impact your relationships with your family and/or partners?

I'm in a similar boat although I'm older than you. I started to suspect about a year ago (after adult son was diagnosed with ADHD). I haven't sought a diagnosis yet, but what I did do was find an autistic therapist, and she has helped me to learn and understand about autism and how it presents in girls and women as part of the therapeutic process. Like you I suspect some family members are neurodiverse but haven't spoken to anyone in the family about any of it! For now I am taking my time to understand myself and come to terms with it all, reevaluate the past in light of all this new information etc. It has been hugely positive for me after a lifetime of beating myself up for being weird/a failure etc.

As soon as Aspergers started getting talked about quite a few years ago now I immediately realised what the root cause of my life long difficulties stemmed from. But I didn't do anything about it

Then since COVID isolation my difficulties escalated and my mental health declined so I knew I had to seek help. I was referred for CBT - a long waiting list. Then the CBT was unsuccessful to say the least. The young woman was a trainee and she was lovely. She agreed with me that she wasnt competent to deal help with my complex problems. So she referred me to a Clinical Psychologist.

After another long wait I attended meetings with the Clinical Pher regularly for a year. It was she who did the.tests with me and gave me an unofficial diagnosis that I am indeed Autistic. Apparently my NHS board doesn't do official diagnosis for adults. By this time I am in my early 70s and so I didn't think it worthwhile to get a private one.

By mutual agreement we terminated the sessions with the Psychologist as she said she did not have the expertise to help me. She did point me in the direction of various resources and got me onto a course conducted on Teams for those newly diagnosed Autistic in later life. This course was very helpful. Since then I've also been on a short workshop locally about ADHD as I I realise I am actually AuDHD.

I have found knowing what I am really helpful. It has taken away the guilt I felt for being different. I understand myself better. I feel i can be kinder to myself. But also it makes me sad that it's given me the sense I can't ever change myself and feel I belong.

I do wonder whether it is worth a diagnosis at this point in time, not so much for myself but almost as proof to my partner of my struggles. It is interesting that you have both sought therapy and how that has helped. How do you get your family and friends to be understanding?

I'm almost 60 and also undiagnosed. I'm pretty much textbook ADHD and possibly autistic too.

It was during menopause that what I now realise were masking and my coping mechanisms fell away. I barely had energy for anything. I'd had decades of eating disorders and depression, but with menopause came extreme anxiety too. Covid lockdowns and rules also brought my neurodivergence to the fore. I found mask-wearing in particular incredibly difficult and seeing others wearing them very unsettling.

I have very little family left and no partner or children. I believe my dad, two siblings and myself were/are ND, though all undiagnosed, while my mum and other sibling not. It's a shame that your partner isn't that supportive. Are they disbelieving or just not feel it's that important? I have mentioned in passing my being ND to the only family member I'm in contact with, and to a friend who has ND family. They haven't been critical or dismissive, but I don't think I'd delve into it further with them.

@Somesweetday said this: But also it makes me sad that it's given me the sense I can't ever change myself and feel I belong.
I feel like this too quite often. I've seldom felt like I belonged anywhere in any situation or grouping, but it's the fact that I can't think or act my way out of being ND that affects me more. I think I assumed that learning more about neurodivergence and coming to understand myself and my history a lot more, would mean I could somehow find a solution to it, rather than just ways of coping. That of course was naive: my mind can't stop being ND. That can be tough.

Yes @TreesAtSea I always describe it as feeling as though i'm from another planet. When I walk down the street I'm an alien being.Everyone else belongs but I don't m.And my mind is separated from my body as though in every situation I am viewing myself as other people see me. And that makes me so self conscious all the time.

I really empathise with your post. Especially the effect of COVId isolation .

OP the only person I've discussed my Autism with is my adult son. He has been interested actually to learn about Autism. I get the feeling he is quite relieved about my Autism because it has given him explanations about my behaviour that he has found difficult.

@Somesweetday I also do the "seeing myself as others probably do" thing, endlessly observing myself and assessing "how I'm doing". It's as if I have to
"run everything past myself" before responding to anyone, to check that I've got it right. Though it's of course possible that my perceptions are off the mark.

I view the world and people as if I'm behind a thick plane of glass. I can see and hear it all, but I can't get in. Sometimes I catch myself thinking, "Ah, so that's how people do that", but in a note-taking rather than people-watching way. It reminds me of a request card someone apparently submitted to the New York Public LIbrary, asking "Do you have any books about human beings?" Assuming that was real, I can well imagine the requester was ND :-)

I don't think it's that my partner is unsupportive as such, just that I feel he doesn't appreciate how much of a struggle I find it to do what are seemingly normal day to day things and maybe thinks I am making excuses.

I think perimenopause has really made things worse as I am so tired and perhaps I am not masking as well as I used to.

Over the last year or so things have been particularly tough as we have an adopted son who is now a teenager and has suspected ADHD and possibly Autism (he is waiting to be assessed). When he started high school he had a complete meltdown so we have been managing the fall out.

I find it so hard trying to parent him as his behaviour clashes so much with mine. He is so loud and I really struggle with the constant noise. There are constant arguments and I quite often say and do the "wrong thing". It just gets me down as my feelings are always dismissed.

Knowing that I may be autistic does explain why I feel the way I do and why I struggle so much with social interaction, but as you say it doesn't really change things much as I just have to find ways to cope.

I would pursue the assessment for ASD. I got diagnosed with both ASD and ADHD in my late 30s and it has helped me to know. Without diagnosis you don't know if you are or not, even some people who think they are completely textbook may not actually be (it's possible to have autistic traits without meeting the criteria for autism), and having that knowledge helps to understand yourself and for those who you share it with to understand you too. It has certainly helped my relationship with my DH.

Another in a similar position. My siblings were diagnosed autistic but I was never tested. I strongly suspect my mum is and possibly my dad, but he's so nasty that it's difficult to tell. I had a horrible mental crisis about 20 years ago but it passed with time and therapy. I sometimes do online 'are you autistic?' tests that say I'm not. I won't take things further now, it's not worth it in my case but may be worth it for others.

The online 'are you autistic' tests are similar to the screening often used as the first stage of the diagnosis process.

I'm not sure where about in the UK you are, but I've seen that some NHS providers have started to do needs led rather than diagnosis led support so that people don't have to wait for a formal diagnosis. They do a ND profile and then address the issues are causing the most difficulties

Thanks @OneQuietPlace. I'll look into this.

I was diagnosed with AUDHD at 57. I struggled from about the age of two, with all sorts of sensory issues, overwhelm and social difficulties. Like a lot of the women on here, I was labelled highly strung, but learned to mask adeptly by early adulthood.

I won't go into too much detail but during the perimenopause, the wheels well and truly came off the bus for me. Most people including family members would not have identified my difficulties as neurodiversity, because the the male orientated perceptions around autism. I was diagnosed with panic anxiety disorder in my 30's.

Two people who approached me to suggest that I might be the spectrum and I subsequently explored the adhd side of things. I had not ever considered this, in terms of my own difficulties, because the children I have encountered with ADHD were outwardly hyperactive boys . My son has a diagnosis of autism, and severe language disorder, so autism was far more on my radar. I have severe inattentive ADHD.

Whilst the diagnosis hasn't really led me to any local services, I do have more of an understanding of who, what and why I am as I am, if that makes sense. I can find online community support and resources. I understand that you can do this without a diagnosis, but for me there is clarity in the absolute. A diagnosis doesn't change anything fundamentally, I now have a sense of validation and self acceptance.