nav[aria-label="Primary Navigation"] { padding: 0; & ul { list-style: none; width: 100%; display: flex; flex-direction: row; justify-content: start; align-items: start; gap: 30px; padding: 0; & li { margin: 0; } & ul li { list-style: none; } } }

We want to hear from you: please tell us about your experience of the online community.

Autism and regrets

Dee78

Hi,

I’m really struggling here. Maybe this isn’t the best format, but I would be grateful for some advice from anyone who has maybe been going through the same thing.

I am in my late 40s, I had an autism diagnosis about 10 years ago, after seeking it as an adult, on the NHS. I thought I would get help, and accessible support, but I didn’t. Where I live the service had been cut. I got nothing. Not even a session after to explain my diagnosis. That was so hurtful, it left me feeling sad to be autistic, abandoned , and more limited by the diagnosis rather than relieved, which if I had got help I would have been.

Instead of direct help, I got ‘signposting’ ( a ’ favourite word for ‘ we can’t help you as there’s no money in our area for mental health or autism’ ) Being asked as someone who has autism , who avoids anything anxiety provoking (and also a physical disability too) to initiate contact with a charity and then get myself to another city : to go to a generic group post diagnosis session with a PowerPoint to explain my years of suffering was not really accessible nor appropriate for me. My GP tried to get funding for 1:1 but that didn’t work out, probably also not helped by my being in another period of overwhelm and not pursuing them.

So here I am 10 years later, and I am feeling so sad. I have missed so many mile stones. The biggest and most profound heartache, is not having children. If I had a partner to support I believe I would have been a good mum. I feel like I have messed up big time and I can’t reverse time. I could have confronted my issues years ago, I could have given up with the NHS autism help, and accepted the injustice and could have spent my savings on private help or something.

I feel like my life has continually shrunk. I used to live independently in another city. Now I am living with an elderly parent for the last 5 years , I have never been in a relationship ( except for 3 months when I was as a student) I don’t work full time and have a low income. I have Ehlers Danlos Syndrome, so chronic pain is my normal and it’s something I have to manage every day. Injuries and chronic joint issues have thrown my life off track several times: in my 20s, and 30s, again only getting a diagnosis 10 years ago and life changing drastically as I accepted I have a physical disability and all that entails.

I just feel so lost, and without a partner or family or stable home, I am struggling with having a purpose or any motivation . ( This is just how I feel, I am not saying this is a fact for anyone else!) I don’t what to do. I just have such a strong life pattern of avoidance of anything that seems overwhelming or I really don’t understand. The big one, being romantic relationships or even what my sexuality is. I’ve not even been on a date in years. I’ve locked that door, I get confused and don’t understand it, or misinterpret peoples actions.All my life I would just focus on one thing , and things like health or family things would completely derail me. I couldn’t multi task, and think about the big picture like my own mental barriers and life goals.

I am so reliant on my elderly parents, I am so terrified of losing them. I regularly catastrophize my future of being alone.

I know that what I write may seem harsh, and I would never judge other people how I judge myself, and I know there is no ‘norm’ but this is what I feel. I have had some value in my life, such as meaningful work helping others and working with children. Even if it has been zero hours and no luck at career progression and stable income.

It’s just really painful now to be working with children , or seeing family friends with children. I feel so left out. The work alone is not motivating me any more. It feels like Groundhog Day, and I feel the same person as I was when I was a child, unlike many of my peers who have partners, children, and live independently.

I don’t know how to get help, where to start. GP been no help. I feel like I have created so many series of ‘locked gates’ in my life that I don’t know where to start in trying to open them. My pattern of avoiding and overwhelm is so strong, that even when I started it thinking about getting help 10 years ago, nothing has happened( yet!) Even if I did get private help and sacrifice the savings that could be used to me being able to live independently,( money , another anxiety ) I wouldn’t know where to start. There are so many people claiming expertise but it feels less regulated and overwhelming in the private sector to know if they have your best interests or profit as motive.

Thank you

Find more posts tagged with

Comments

Nightcity

hiya

I'm in my early 40s and relate to a lot of what you have said.

I'm a fairly open book and most in here already know all this, I am also living with my mother who is very unwell herself, I spend literally every waking minute scared witless of losing her which has accelerated since march when she nearly passed away.

I've had 3 relationships, none lasted longer than 10 months, 2 were bullies who didn't understand me and tried to change me through forceful actions like aggressive put downs and hiding my money.

I was diagnosed 9 years ago myself and I don't think having the diagnosis of autism or it's interconnected issues I also have such as learning problems has made a difference to my life,my poor mum has to do so much for me that others take for granted.

I do have an amazing GP but there's absolutely no help around here either, the mental health clinic admitted They can't do a thing for me regarding my depression and anxiety as both are wildly out of control and respond to nothing.

I don't have children either,I do have moments of wondering what if, but I can't even look after myself so ot is what it is for me.

I do tend to find only autistics fully understand other autistics which doesn't help in the general wide world.

I get very lonely but I also enjoy peace if that makes sense.

I do sometimes consider relationships again but I'm hard work and feel old plus I'd end up with another narcissist I guarantee it.

I avoid anything I can away with including appointments, Routine change and strangers make me so unsettled.

you're not alone here, there's many members with autism and fairly similar stories.

best wishes

Jane315STARX

@Dee78 im so sorry you are struggling.I can't imagine what its like to be in your situation as im not in it.I am trying to think of some solutions which may be useful.As a mum myself ( and this is going to sound very bizarre) but its true.I actually found more joy in being a mum to my dogs.The love and happiness they brought me over the years is utterly unmatched.So with that being said,im unsure how your illnesses affect your ability to have an animal such as a dog or a cat.But as you obviously have a maternal instinct is this something you could consider?.As far as relationships go I think we all want/wish for things that perhaps don't exist.I was in a relationship with a narcissist for many years and realise now how very fortunate I am to be free.But of course its natural for is to wonder what could have been.I have continously found in regard to drs that it seem a pattern of late to find either incompetence or simply to be left to 'get on with it'.So it comes as no surprise to here what you have said is basically still going on today.There are obvious similarities between yourself and the wonderful @Nightcity and im sure its always helpful to know that in some small way someone reflects similarities that can be overcome

Jane315STARX

Apologies for my spelling mistakes here instead if hear.my brain is not working today!

Nightcity

That's great advice Jane. Because I do view pippa as my child had her two years this coming week and as silly as it may sound Both mum and myself refer to mw as daddy when addressing her and animals give so much love without the bad bits.

Jane315STARX

Animals have pure innocent and totally loving souls.Im not saying that children don't.But all I can say as having been a dog parent and cat parent there is no other love like it.I think it is equally beneficial and Certainly think its worth considering

jonf

https://forum.scope.org.uk/discussion/140266/autism-and-regrets

once I lock a gate it stays locked

Andi66

I can relate, I'm 58 diagnosed with Autism age 55. There is no after care when you are diagnosed. I also looked after my late mum until 8 years ago. I had a child from a abusive relationship, and brought her up as a single parent from birth with help with my mum. She's 26 now.

I also have hypermobility syndrome disorder, and in pain all the time. It's similar to EDS, and copd. I understand as I was a carer for my mum who was housebound and In poor health, I also have pets, who are my world.

Have you thought of going to the gp who could refer you to a social prescriber who could help you find groups , volunteering, etc

Take care

Kimi87

Not autistic but totally relate to lots of what you have said. I'm 38, one short "relationship" and that's it, I've struggled my whole life apparently being invisible to men. I don't understand why nor do my friends or family which makes the situation even more depressing and infuriating.

Dates? Must have been on about 5 my whole life. I know people who have gotten married through online dating, I can't even get a date.

I grew up picturing myself as a mum but have accepted that's not for me, I could never meet a child's needs. Yes it's painful from time to time, more like a sting rather than the gaping wound I feel constantly over the lack of success romantically.

What I can't accept is being single always, all my friends have progressed with finding partners and/or having children, then there's me the last single person. Multiple friends who got married then divorced have all found new partners! Others who were single like me for a long time now in relationships, no it doesn't give me hope and I've cooled some of those friendships because it's too painful remaining the outsider.

I haven't even had sex for 5 months and I'm not a woman who is unbothered about going without. Not just sex, I lack absolute basic touch in my life which is extremely difficult as I am a tactile person. I can go weeks without a hug or touch on the arm. Touch deprevation is a real condition.

After never meeting anyone through education for the next two decades I try try try, I'm active with local social groups, I volunteer, I attempt a range of online dating, nothing ever works for me. Being chronically ill and volunteering with animals means my natural opportunities to meet people are shrunk. So I try the community groups etc but that has never worked for me either.

I've lost a significant amount of weight & radically changed my hair colour, very happy with my appearance, same results nothing. I do ALL the things recommended and I'm still single.

I finally moved out at 35 and while I'd now never change living alone, living alone while single is extremely lonely.

Having to live a life that doesn't meet my physical or emotional needs, for reasons unknown, is awful and particularly bad this time of year.

After 20+ years I simply don't believe the platitudes of "you'll meet someone" or "it'll happen one day". These people just can't comprehend not everyone is normal in terms of relationships. No matter how much I explain.

Nightcity

This is another good point raised, watching everyone succeed around me and feeling bloody terrible.

especially when my much younger cousins have done so well, if severe depression is part of your life, and it often is in autistics and on forums like this non autistics too it certainly packs a very painful and scary punch.

I often find myself in tears comparing virtually everyone I know against myself and thinking what a waste of space I am, then carrying the guilt of ruining mums life which was actually extremely successful until I was born.

I've been single 16 years in April and although I don't miss the poor treatment I miss the good parts if that makes sense.

rubin16

https://forum.scope.org.uk/discussion/comment/1087419#Comment_1087419

This is where my Autism differs, I'm technically still a virgin, don't like being touched or any physical contact. I never crave social contact and as soon as i'm in a social setting i'm counting down the minutes till i'm alone again. Don't like relationships nor do I ever crave in having one. I could go months/years without any form of social contact and won't crave it. My only friends are online.

Its like I never matured that part of me, or I completely lack that part of my brain to be social. I'm nearly 35.

rubin16

https://forum.scope.org.uk/discussion/comment/1087488#Comment_1087488

I was "SA" as teen which doesn't count.

Rachel_Scope

HI @Dee78, I'm so sorry that you're feeling so low. I've sent you an email if you can be on the lookout for it.