I was diagnosed in summer, a 50 plus year old guy.. I’ve masked all my life, struggled to hold down jobs.. I really thought a diagnosis would help me understand but still feel alone, more confused and isolated. Was it worth it?
I was diagnosed in summer, a 50 plus year old guy.. I’ve masked all my life, struggled to hold down jobs.. I really thought a diagnosis would help me understand but still feel alone, more confused and isolated. Was it worth it?
read every book I can find, internet article… but most seems targeted at kids diagnosed. Seems zero support for older diagnoses
Have a read at:
Very Late Diagnosis of Asperger Syndrome - Wylie, Philip_ Beardon, Luke_ Heath, Sara (2014)
ISBN 9781849054331
It is10 years old but still a solid resource on the subject.
Hi and welcome to the community.
A diagnosis does not help one understand oneself, nor does it change who you have always been. We have to study and learn, and in time usually an acceptance will come.
I wish you well in your journey and please ask us anything you like. This forum is here to support you.
Oh read every book I can find, internet article… but most seems targeted at kids diagnosed. Seems zero support for older diagnoses… guess we have developed our own coping mechanisms.. but many of mine aren’t healthy. Isolate a lot as it’s easier.
Because it’s invisible to the world people don’t understand how situations can trigger or become so overwhelming.. and no rhyme or reason to it. Just tired ..burnt out
It’s a case of getting through each day.. researched but such varied information and doing it all solo is not easy. Lack of understanding doesn’t help. Not sure if it’s the autism or depression… the drugs I was on for depression did zero to help Its exhausting
Seems that once get diagnosed it’s off you go.. very little if any support for older people.. try and talk to my peers and all seem to hear is ‘well isn’t everyone on the spectrum?’ Very little understanding… very little funding for support. Lots of different info online but most about autism in children. I just don’t fit anywhere and it’s draining to the point just give up
still feel alone, more confused and isolated
In respect of these feelings, you might also find these resources helpful:
NAS - Making friends - a guide for autistic adults
You might also like to contact your GP surgery to ask to be referred to a social prescriber / social prescribing link worker.
Their role is to work with you, potentially over several sessions, in order to develop a personalised care and support plan that meets your "practical, social and emotional needs that affect their [your] health and wellbeing". The model operates throughout the UK. For example:
NHS England - Social prescribing
This could, for example, form part of the personalised support plan that you're entitled to, as explained in the NAS's "formal support" article (which is included in the resources that I linked to in my previous post) - and which you might want to follow up with your GP about.
Belated congratulations on your diagnosis and welcome to the community!
During the period following a diagnosis, it can be common, and normal, for us - especially as late-diagnosed adults - to experience a lot of emotional dysregulation. Besides feeling relief about getting our diagnosis, this can also include working through a phase where we experience (backward-focused) anger, frustration, grieving and more.
The NAS has a great set of articles focused on "after diagnosis", including one covering how you might feel during the subsequent days / weeks / months. You might find them of interest and/or helpful:
NAS - How you might feel after a diagnosis
NAS - Other advice covering post-diagnosis including:
For me, as for many others here, my diagnosis turned out to be much more of the start of a new learning journey, rather than a conclusion full of ready-made fixes for my various difficulties.
Therapy is often recommended after a diagnosis, as a follow up action for your GP to arrange. You might find it helpful to borrow or buy this book, which includes discussion of various types of therapy and counselling, together with advice on choosing the right therapist or counsellor - all from an autistic person's viewpoint. Several of us here have found it very helpful, myself included:
Yes...it is always "worth it" to know more about any given situation, in my opinion.
However, just knowing about a situation doesn't normally assist you with practical or mental ways to deal with it, in any meaningful way.
First accept the knowledge and then research the hell out of the topic (although most autists seem to do both at the same time, or in reverse order.) I think the "acceptance" part takes longer than we think.....for many of us.
Then you can start to think about what you have, or where you can summon, HELP to improve the situation.
I think most late diagnosed folk hover in and around this previous sentence for a good few years......it ain't easy and from what I have read on these pages over the past couple of years, and external help and assistance (in any meaningful sense) cannot be found for the 50+ group. Therefore, we need to self-generate / self-implement improvements for ourselves.
I wish you luck Baggers.
Same experience.
Diagnosed, zero follow up or support. Flying solo. No sense of self anymore. Just getting up and breathing my way to this evening. Not sure there's much else can be done, I feel like I'm a child discovering he world again, sort of. Accept, the life around me doesn't seem to fit anymore
I'm 53 and my diagnosis came through just before Christmas. I can go back to my local mental health service but they just give me space to vent and can't offer any really help. They don't have an autism specialists on staff and they suggested MAIN which is an organisation that is set up to assist autistic people.
I've reached out to them via email and telephone. They don't respond to email and phone calls go straight to voicemail which also don't get returned.
I do research (which lead me here) but still feel a bit lost. I bumbled my way through life being a the square peg; now at least I now know the reason why.
The problem I find is that "one size" doesn't fit all when it comes to autism.
I'm a level 1 and I cope pretty well most of the time but some days it can be really tough. It can be really isolating.
There are various links on this site which offer guidance.
Welcome to the forum Baggers!
It will take some people more time than others to accept and understand their diagnosis. It has taken me about a year to fully come to terms with mine.
Give yourself plenty of time to learn about autism and how it impacts you, and learning and resonating from others, it will get easier. You’ll soon know it was worth it.
I really thought a diagnosis would help me understand
Can you share what you have done to educate yourself about your autism please?
Post diagnosis support has been largely absent for those adults with "high functioning" in the diagnosis although I think new guidelines has been issued in the NHS to improve this - if they ever get funding to hire the resources to do it of course, but that is a different matter.
still feel alone, more confused and isolated.
This seems quite a common issue for late diagnosed people in my experience - I was diagnosed in my mid 50s and people largely didn't want to know in my family and work so I just continued as I was before with them, masking away until I was able to retire early.
I found this site if a great place to find similar people, talk about our issues (or in some case share photos of their cats!) and generally have a sort of community of a lot of quite different people bonded by a shared diagnosis.
Was it worth it?
It is only worth it if you take that information and make it work for you. Learn about your traits, find ways to reduce their impact on your life, find coping mechanisms to let you achieve things that were previously beyond you because of your traits and - if you have the guts - get a therapist to go through your life experiences around autism to "unpack" the traumas and find a way to live with them.
The last item is not for everyone but I have heard so many people here making significant improvements to their quality of life by dealing with these things that you didn't know were in your subconcious, making you look over your shoulder, freeze up, run away or whatever when certain things happen.
But I'm just some random off the internet so don't take what I say at face value without doing your own research.
Welcome to our community.
