It all came too late for me

I think there'll be a fair few in the same boat and it's certainly affected several members of my own family.  There was no help in the 70s and we suffered a lot because of this.  Well, no help unless you count being prescribed valium in capsules large enough to fell a bear or, if the situation worsened, hospitalisation, although with next to no knowledge about autism, it's likely that this would have been under other diagnoses (possibly when someone became so distressed that anxiety and depression excalated to crisis point and they then seemed to the criteria for a number of other psychiatric diagnoses).  So I have the feeling that, without the core diagnosis and autism-friendly care, hospitalisation probably wouldn't have helped many either.    

I find it all quite tragic and a number of my family members who were affected are no longer with us.  I can only say that, for them at least, keeping away from services as they were was the most helpful thing that could have happened, even though life remained far from perfect. Also that their lives were far from worthless - they were lovely, caring, gentle people, in fact - and, although opportunities were lost, there were still some good times, especially in the longer run and into old age.  

I'm afraid I can't be more positive about it all.  It may be that I was traumatised as a result of the things that happened within our family.  But I really want to emphasise that it's not your fault and it in no way reflects on you or your worth.  It's really hard, I know, to look back and reflect and realise that, if we'd been born a few decades later, things might have looked very different.  But still, I'm all for taking small pleasures where we can and feeling relieved that things are improving, however gradually.  It's still not enough and my sons, now in their later 20s, still believe that it's all too little, too late.  In spite of that, and the significant problems we still face, I remain determined to do and enjoy what we can in whatever time we have.  I feel a bit "Frankl" about it, in that his book "Man's search for meaning" refers to a kind of "tragic optimism", but for now this is where we are.              

At the time of my 1st psych admission I was Felsted for what should've been the term I took A levels.I'd overdosed at the end of the previous term, but foolishly decided to go back  so as not to disappoint my parents. I lasted a week before spending a few days  in the school sanatorium  and then being transferred to a large psych hospital. I went in with a rose tinted view of psychiatrists , which was shattered very quickly.

After a week I was told I was going to help make dolls' houses as part of the treatment. I have very poor constructional ability and indeed wasn't even in a fit state of mind to do anything well. I had a big panic attack, and was pulled from the path of a hospital bus. I then had to see a doctor who instead of doing the intelligent thing , which would've been to find out why I'd reacted as I did, decided to adopt a stern 'You're an awkward and troublesome teenager' approach.

With that my rose tinted view of psychiatrists was completely shattered. To them I was an awkward and troublesome teenager, because it no doubt was written in my psych notes that I was. Over the next 42 years the situation got worse and worse. It was not helped by my becoming friendly with an older woman they disapproved of , and leaving hospital with her in March 1983.  She died due to health complications in 2005. In 2003 she'd been dxed with vascular dementia.

In September 2017 I moved to be near my stepdaughter.I had not been doing well in Essex. In October 2018 I had my 1st psych appointment here in Wiltshire . The pdoc was polite and asked a string of questions. My s/daughter who was with me mentioned autism. The  pdoc ,unlike my previous mental health team  in Essex, didn't dodge the subject but asked pertinent and sensible questions.At the end he said the best fits dx wise were schizophrenia and ASD. 2 weeks later I got a letter saying that I'd been referred to be assessed which would start in February 2019. In May 2019,at the age of 62, I was given the dx of Asperger's syndrome.

Oh, Firemonkey, this sounds like very poor care.  You were badly let down by services and it seems that parental expectations weighed heavily on you and have stayed with you over the years too.  I get the impression that if just one of these people had listened, given you space to talk about your issues, feel heard and be yourself without fear of disapproval it would have made quite a difference.   

Services just weren't geared up at all back in the 70s and the dolls house experience just shows how useless they were.  And not very empathic or even considerate either.  When I think back to some of the writers featured on my counselling courses I realise that the way services behaved back then was way out of kilter with well respected psychologists and counsellors who were already widely read in the 50s and 60s!  For me this makes it harder to bear and it becomes even more troubling when I can see that services today are still lagging behind in terms of the knowledge and awareness that has emerged regarding autism in the past 20 years. 

The diagnosis came very late for you and there's really not enough support for those of us diagnosed later in life.  I sometimes think that even services, who we're taught to regard as experts, have an idea of autism that is mainly associated with the very young.  I don't know where they think these youngsters all go as they age!  

I still think, though, that it's a case of better late than never.  I can still feel my own mind reshuffling itself in the light of my own diagnosis, which I think was a few months before yours.  And I'm hoping that this new knowledge, and any validation that might come with it, can shape our futures in more positive ways.  It's largely this hope that keeps me going.  

Oh, Firemonkey, this sounds like very poor care.  You were badly let down by services and it seems that parental expectations weighed heavily on you and have stayed with you over the years too.  I get the impression that if just one of these people had listened, given you space to talk about your issues, feel heard and be yourself without fear of disapproval it would have made quite a difference.   

Services just weren't geared up at all back in the 70s and the dolls house experience just shows how useless they were.  And not very empathic or even considerate either.  When I think back to some of the writers featured on my counselling courses I realise that the way services behaved back then was way out of kilter with well respected psychologists and counsellors who were already widely read in the 50s and 60s!  For me this makes it harder to bear and it becomes even more troubling when I can see that services today are still lagging behind in terms of the knowledge and awareness that has emerged regarding autism in the past 20 years. 

The diagnosis came very late for you and there's really not enough support for those of us diagnosed later in life.  I sometimes think that even services, who we're taught to regard as experts, have an idea of autism that is mainly associated with the very young.  I don't know where they think these youngsters all go as they age!  

I still think, though, that it's a case of better late than never.  I can still feel my own mind reshuffling itself in the light of my own diagnosis, which I think was a few months before yours.  And I'm hoping that this new knowledge, and any validation that might come with it, can shape our futures in more positive ways.  It's largely this hope that keeps me going.  

Yes, I think it can be harder to bear when part of the answer could have been so simple - basics like listening, respect and compassion for others.  I'm glad you have the support of your stepdaughter and really hope that you see more in the way of these qualities more generally now.  A late diagnosis can come as a major mind shift, I think, plus new knowledge for an older person can take a lot of processing and a goodly while. 

I suppose that I take some solace from at least finding out at all because many in my and others' families lived and died without ever knowing.  And it might feel like cold comfort, given everything that's happened but, compared to previous generations, plus plenty of people even now, it's actually immensely important to know and increasingly understand ourselves and some of the dynamics behind our experiences.  It feels to me as though we've been swept along on waves of ignorance and judgement that often pervade our culture but that now maybe the tide is beginning to turn.  I'm sad and regretful about the past but I'm glad to be alive to see new beginnings.          

It would've been wonderful if someone had listened,but they were too arrogant,too lacking in humility to do so.