Not just children suffer

Welcome to this Forum

I was 64 when I finally got a diagnosis. It explained everything, my whole life, or should that be hole life. It has improved simply by knowing who I am and knowing more about my condition. I stopped trying to not be me, and accepted myself as I am, warts and all. I am now married and the happiest I've ever been. I still have the condition but can live with it.

Getting a diagnosis of Asperger's Syndrome didn't make my anxiety go away either but knowing I was not some "oddity" - that there were other people like me - made me more relaxed about it. Maybe receiving the diagnosis after I'd retired made a difference.

I sometime wonder whether counselling/therapy really helps - apart from the comfort of being able to discuss my problems in a way I couldn't with friends or relatives.  In the years before I was diagnosed - in fact before autism/AS was recognized as a condition - I had a number of sessions at a local clinic but while they comforted me at the time I didn't get any long-term benefit.

I'm sorry if this doesn't seem very positive.  What did help me was joining forums like this one and I hope that this works for you. 

I’m 59, married, working (computers), outwardly normal(ish) – apart from the pony tail, but inside I’m often somewhere between anxious and terrified.

I have always thought there was something wrong with me, or something missing, and I have struggled through life suffering bouts of depression and anxiety as well as some physical health problems that this brought on.

I was given a diagnosis at the end of February, and I'm surprised at how shocked I felt when I was told I have Asperger syndrome. I suspected I was on the spectrum, as I’d read a bit about it and done a number of the tests, so I was expecting that diagnosis, but I wasn’t expecting to feel so shocked when I was told.

Being given a diagnosis of Asperger syndrome has not made my anxiety go away – if anything it seems to be worse, but I hope that’s temporary and due to the fact that I’m still having many 'aha' moments as I remember anxious situations in the past, and looking at them in terms of Aspergers.

I try to have a positive attitude and get on and enjoy my life, and try to avoid spiralling into depression. But, as I guess most of the people on here will know, the slightest thing can set me off. Then, if I’ve not had a chance to recover and reduce my anxiety levels, I’m more vulnerable to re-triggering, and

I get more and more anxious until I get stuck. For days. Though my wife says it’s sometimes for weeks.

Being given a diagnosis at this age, after trying so hard and screaming for help to find out what’s wrong, is shocking. And it’s sad. I envy the younger people who have been given a diagnosis. Hopefully they will have the benefit of so much more knowledge and awareness of the autistic spectrum to help them to learn better coping strategies.

Frank.

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To the Controller (if there is one): Please press the ‘Pleasant’ button.

stranger said:

[quote]There's also the question of the perception of adult autism.  Since many of those coming forward for diagnosis have worked - often at demanding jobs - and some fortunate ones have managed to achieve relationships, then there is a strong feeling that they don't need support in any form.  [/quote]

They cope because they have to. It doesn't make their problems any less valid than the child diagnosed with Autism.

Oh, I agree totally.  My point was that BECAUSE they've apparently coped so well there is often a lack of understanding of the underlying cost in terms of physical illnesses brought on by stress and/or depression and anxiety. 

NAS11521 said:

There's also the question of the perception of adult autism.  Since many of those coming forward for diagnosis have worked - often at demanding jobs - and some fortunate ones have managed to achieve relationships, then there is a strong feeling that they don't need support in any form.  

They cope because they have to. It doesn't make their problems any less valid than the child diagnosed with Autism.

Actually, they may not have coped. I'm nearly 23 and have always had problems with relationships, have had strong interests in stuff, (one of which I made the mistake of mentioning - someone once said I'm "officially scary"...) always been hyper and hypo sensitive to stuff, etc. To the extent that standing in a room with bright lights would ste off migraine. But like everything else, a lot of my problems have been blamed on my sight difficulties.

AnneMargaret said:

I understand i may offend a few people with what i say but i assure you it is not intended. I just want to say it is not only children that have Autism. If they are diagnosed as a child then they appear to have much more help and support. EG specialist schools. Some people are not diagnosed until they are way into their adult life. They have had to struggle with their feelings all their life with no one knowing what's wrong and blaming them for the way they act. I wish there was more support and awareness for adults with problems too.

Sorry if i upset anyone.

Autism was originally diagnosed in children and it was some time before it was recognized that people in adult life were also on the spectrum.  I think it's for this reason  that most of the help available is still aimed at children and their parents. 

There's also the question of the perception of adult autism.  Since many of those coming forward for diagnosis have worked - often at demanding jobs - and some fortunate ones have managed to achieve relationships, then there is a strong feeling that they don't need support in any form.  My GP was quite frank about this.  When I first raised the question of diagnosis she said there was no provision in my local Health Authority for adult diagnosis since all  their funding was directed towards children and young adults and I suspect most parents would agree 100% with this viewpoint.   I managed to get a diagnosis after making the point that since I am retired I'm not likely to claim financial support. 

Also, there are  those who believe that adults receiving diagnosis are not truly on the spectrum and that the banding has been wrongly widened to include them.   I don't know how many people inside the profession believe  this but it has come up quite frequently on another board.

Hi Hope

I found your words very eloquently put. and could certainly relate to them.I was diagnosed at the beginning of this month at the age of 50 and I just feel lost. I live on my own in a very quite part of Scotland, have no friends - all my family live in England. I told my Mother, tried to explain how it has affected me all these years and she just scoffed "they blame autism for everything these days" - amongst other hurtful comments, she also suggested that I just don't mention it to the rest of my family because, if she doesn't understand then no-one else will. What's sad is that she is probably right as I've always been viewed as the "odd" one and totally misunderstood.

However, having a diagnosis will help me understand myself better, hopefully be a bit kinder to myself - it has been and still is, a long journey.

Do you have a local Autism charity in your area? I get support through my local charity, which is independent of the NAS. If you do, you could contact them and ask how you get onto their waiting list or you can contact social services and ask for an assessment.

My support worker helps me to get over my anxieties and phobias. She goes on outings with me on the train and bus, and she helps me in the home with skills such as cooking and dealing with rubbish. She also helps me find voluntary work.

I am waiting for that. To see if i can get funding, does that include that then do you know? Sorry for all the questions lol. We have had faff about though as we chased up social worker and they hadn't heard of me! Then they gave us a number for another who hadn't received my referral. That was 3 weeks ago so got to chase them up if we can find number again. Would be nice to have support worker. What do they do with you?

Anne x

I see a support worker  for 10 hours a week, who is trained in Autism. I get support through social services. You can apply for support by getting a needs assessment from a social worker. The psychiatrist who diagnosed me referred me to social services.

I can relate. Support for children is vital but equally so, if not more so, is support for adults, particularly those who have gone through childhood undiagnosed. We are often deeply scarred with a thousand wounds caused by ridicule, criticism and endless put-downs. We will cope differently, the worst result being depression, but most of us will have low-self-esteem and frustration bubbling just below the surface. Appearances can be deceptive: we can look like we are coping but the smallest put-down or mistake can turn us into nervous wrecks as repressed emotions rear their ugly heads.  We are often at our most vulnerable as adults. The structure of school is replaced by too much responsibility all at once without any order, instead just endless chaos and uncertainty. I am lucky to finally have lots of support, which has helped tremendously, but I still feel a great void in my life. I would love to go on holiday but the anxiety stops me. I would love to have a paid job but the anxiety puts obstacles in my way. I would love to have a partner, to get out more...but the anxiety stops me. I do sometimes feel quite sad about this or feel weak: why can't I stop my anxiety? Just one day without it would be amazing. If only...

Oh my gosh i feel like i can relate to you. I too would like a job, partner, holiday etc. What support do you have cos i have none?I am in Leicestershire.