Newly diagnosed later in life and post diagnosis support

I'm also late diagnosed, in my 50's, now 60 & as far as any kind of support - I found none.  I gave up looking for a while, then trawled the net the other day & found this site.

Something that really did help was this book : 'Very late diagnosis of Asperger Syndrome by Philip Wylie ISBN 978 1 84310 669 2

I felt like I could have written the book myself, related to it so much.

That must all be very traumatic and not the support you need at all! 

In addition to keep engaging on here, I suggest you join a local autism support group. Google should help you find one, or maybe start a new thread and there might be folks on here that can point you to groups they know in the Manchester area. 

It's sadly true that there are not a lot of resources available for people that have been diagnosed with Autims as an adult. 

I have found some great podcasts and youtube channels and also read books on the topic. 

This is the problem for older late diagnosis adults, we have no idea exactly what post-diagnostic support we might want or need, including in a workplace setting, regardless of any versions of Autism, some of which I looked at in the link and click through links from Mod Chloe - even if it’s PDA/avoidance and/or high-functioning Autism, etc, some of the support (seems) inappropriate and other support for adults appear to want to teach you to re-learn everything all over again, (almost) like “teaching people to suck eggs” as most autism support is generally geared towards children with the condition and not adults with late diagnosis, even in the private sector (which in any case is very expensive) - in my own case, I did wonder about the true motivations of certain family members in Ireland who were trying to steer me towards a later in life diagnosis before 2019, even though I had done some research beforehand, given my own childhood and background, where I had been in a residential centre for 9 months as a child involving childhood school bullying in the 1970’s and early 1980’s, where bullying was seen as a rite of passage and you were supposed to take it and go through it as being (somehow) “deserved” as a form of discipline - we know that a common denial tactic of bullies, including but not limited to workplace bullies, is to say that those who are bullied do not understand the difference between bullying and discipline and are dismissed as having “mental health issues” and/or “behavioural issues” - I often wonder if a residential placement (autism boot camp) and/or work placement programme, coupled with greater understanding of the condition in the wider society generally are possible solutions, as we know that there appears to be a greater incidence of Autism/ASD within the LGBT community - I’ve heard about the Access To Work, but again I don’t know what I’d want nor need, even if I’m in the wrong type of job for my condition - given my 30 years supermarket retail experience (not by choice) I’ve no other relevant work/life experience or qualifications, even with training, to move into another job considered more appropriate for my condition - it has also been said to me over the years that I do not understand that I am wrong and that I do not understand the concepts of discipline and of “common sense” because of lack of “proper” parental discipline in childhood as maintained by my grandparents generation, who were strong advocates of corporal punishment to correct “bad” behaviour in children, where children were to be “seen and not heard” - in school, we were punished via corporal punishment for being bullied as children and any adult support for late diagnosis adults is only geared towards severe autism, not “high-functioning” autism and appears to make certain assumptions about an individual’s IQ and/or level of intelligence from what I’ve seen online, which does not appear to take into account people’s lived life experiences up to a certain point, including religious, social, cultural and other differences 

Thanks for this - Ill try to find a way of passing this on to my social worker here in the U.K. as my family in Ireland are fairly insistent on the fact that I need a live in carer post diagnosis in a traditional Irish Catholic cultural context and are prepared to do anything to ensure that this happens, where they also firmly believe and maintain that ultra strict discipline as given by a live-in carer (ideally a Catholic Priest, Friar or Religious Sister/Nun) is the only way to and is essential in managing my condition - one family member who is an ex-Millitary officer, has developed a ten-point-plan on how my condition needs to be managed and is passing it on to everyone as high up as possible in the U.K. and to everyone he can think of (anyone that will listen) to ensure that his plan in fully implemented in regard to my condition and that his demands are met in relation to my condition, especially as my diagnosis was carried out online via Zoom and in the years before my redundancy in Sept 2019, my family had wanted me to move back to Ireland when they suspected that I might have this condition, acting under traditional Irish Catholic social teachings 

Yes I haven't been able to find support for being late diagnosed. So I'm looking at where or how I might need support around specific issues.

It is also involving traditional Irish Catholic social teachings in thier mindsets that they firmly believe that I need to be “made” to do stuff and to obey thier commands without question nor comment where any comment made by myself in response to this is in all cases deemed inappropriate coming from either myself and/or any advocate and is therefore dismissed as nonsense and foolishness, displaying a lack of “cop on” - the concept of the Irish “cop on” as in “cop yourself on” is not as fully understood outside Ireland and outside of Irish culture 

Dude.....that all sounds very rough!  I'm not sure I would tolerate that sort of "attitude" directed at me.  Cold logic and survival instincts tend to 'click-in' when I'm faced with that sort of abuse - I think I'd be full-on fight or flight in your shoes.

Whilst others may not be interested in your views, opinions and perspectives, I think that I can safely speak on behalf of "us" here and say that WE are.  You are valid, validated and listened to here.

In light of what you have explained above, you also have my respect and sympathy for what you are / have faced.

Well done you, for not becoming a proper nut-job!

All the best.

Honestly Joe, irrespective of whether you question or embrace a diagnosis, I do not believe there is any support for a late diagnosed adult.  This is my understanding.

So I clicked on this thread as I'm newly diagnosed and of a similar age myself. However,  reading it I'm confused as to whether you're looking for support or questioning your diagnosis?

Both are valid questions, but if you don't accept the diagnosis, I'm struggling for how you would find support for it.

I’ve seen another post about diagnosis which was way beyond my knowledge and given that my diagnosis was online and via Zoom just after Covid in 2021, I’m now beginning to wonder how accurate my diagnosis was, given that they said in that post that too many people are being incorrectly diagnosed using incorrect diagnostic models/criteria, so I’ve flagged this up with my social worker, who is arranging a second in-person diagnosis - I work alongside someone who has an older brother with the condition and whose mother  works in the area of mental health, so even aside from age, cultural and other differences, I’m shocked by thier refusal to understand this condition, even in a workplace setting 

Thank you - I often wonder about the true intentions and motivations of those wanting me to get the diagnosis in 2019, even though it ended up being online just after Covid in 2021 - I notice even more that some people who know about my diagnosis are now even quicker to both silence me and tell me “to cop myself on” and tell me that I must not attempt to form nor express any views nor opinions on any issues, which in thier opinions are wrong by default and that “I do not understand that I’m wrong” in the belief that the only way to manage my condition is via ultra strict Millitary style discipline (to make up for what they believe I did not have in childhood, which they believe is the source of my Autism) as they believe that I need to be “knocked back a peg or ten” and “put firmly in my place” due to my “immaturity” at age 52 and formerly involved with the LGBT community in my teens - one family member in Ireland, an ex-Millitary officer, has written to every official body (and otherwise for all I know) that he can think of here in the U.K. with a “ten point plan” for how my Autism needs to be managed and has even gone as high up as he thinks he can to have his demands fully implemented - I’ve given up trying to have any civilised conversation with him even via email or text because every time I’ve tried to reason with or explain anything to him, he just screams down the phone at me to be silent, as if he was in charge of the parade ground and I was one of his soldiers needing his brand of Millitary discipline given his Millitary career as he and many others like him simply refuse to understand this condition in any way, constantly saying that if I had been slapped often enough and hard enough in childhood, my condition would not have arisen and that what I’m in need of now is “tough love” given “the hard way” and he wants to see a far more confrontational approach taken by mental health professionals and others with regard to my condition 

Thank you - in regards to employment many jobs that are considered appropriate for our condition even with appropriate training do not match our previous employment experience and are not considered relevant, such as 30 years in supermarket retailing and in my case, working in public areas cleaning and kitchen porter in a hotel just over a year now, which is not really a good fit, but the choice to leave, even if I find a more suitable job without going back on benefits, is not really up to me, from other people, who believe that I need ultra strict military style discipline in order to manage my condition and they want me to have a live in carer and travel chaperone for long distance travel over 20 miles 

I was with a Social Enterprise, based in Belfast, until I had a job, which only lasted three hours, which was a real Road to Damascus, for me. 

For better or worse, from everything I have read and researched, you have already found the only REAL post diagnostic support available - you are here....this place is it.  I'm 50+ and had the lightening bolt of autistic realisation and acceptance just a few months ago.  Before that, I thought I was a mentally struggling NT.....now I realise that I am a mentally coping (just) autistic.   Without this place, I would currently be in a FAR worse place.  I've seen you around and contributing...I hope you chose to continue doing so.

Hello IrishInManchesterUK

Welcome to the community! 

You may find the following page our website useful: 

https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/post-diagnosis-support 

I hope this helps.

All the best,

ChloeMod

There isn’t much support out there to be honest. Help can come from forums like this and other communities. There are types of therapy that might help give you a better understanding of yourself, but I know anything meaningful and targeted to you as an individual would be via private means. Not ideal unless you have a disposable income. It depends on what you think you need help with. Managing stress and anxiety can be assisted with CBT and mindfulness, though not everyone finds it useful.