Diagnosed at 62.

Hi I am Fiona. I was finally diagnosed as Autistic 2 weeks ago at the age of 62. I have three adult children, my eldest son was diagnosed with Aspergers at 17. When my second son was 40 he asked me if I thought he may be autistic. I immediately said no, of course not, you are just like me!

Most of his assessment was spent talking to me. As the assessment progressed I became aware that all of the questions the lady was asking, and all the answers I was giving about my son, also applied to me.

I have always struggled with friendships, relationships, working environments that involved teams or groups of people. I work better alone.

I have been diagnosed over the years with depression, anxiety, panic attacks etc and have at times been prescribed some pretty nasty medication which made no difference to how I felt but came with horrible side effects.

Over my lifetime I have also spoken to psychiatrists, counsellors, therapists, many GPs and various other so called 'health professionals' and not one of them picked up autism. It's so much easier to write a prescription. I am really struggling with that at the moment. So many times I asked for help, sometimes from an extremely dark place, and every time the only answer was to medicate me into a zombie.

Another thing I am currently struggling with in light of this diagnosis is that levels of autism are no longer used. The team who diagnosed me were lovely and explained that levels are about support needs, and that due to masking, someone may appear to have lower needs when their needs are actually greater than they appear to be. I accept and understand that. It's actually quite reassuring given my personal experience, but I am currently rethinking my whole life and searching for my 'tribe'.

The realisation of all the ways in which I have been abused, sidelined, ridiculed, and called all sorts of names over my lifetime — weird being the least offensive — has left me feeling embarrassed, ashamed, humiliated and very alone. These days I am an expert at cutting people off when I feel disrespected in any way, but making new friends is so hard.

When I look at local support groups I see people at all levels of autism. I am struggling to see myself in them. It appears to be a 'one size fits all' kind of experience. I mean no disrespect to anyone when I say this, but at this point in time I feel like I need time to process this, to reframe 62 years, to rethink my whole life and how I move forwards. The idea of joining a group of people with much higher support needs than my own feels desperately upsetting to me.

I don't know yet how to feel about all of this. But I'd rather sit with that honestly than pretend I've got it figured out. I'm not looking for reassurance — I'm looking for people who understand what it's like to find your tribe at 62, after a lifetime of being told you didn't belong to any.

  • Hi FionaB and welcome to a place where you'll hopefully feel understood and supported. I just wrote my first post yesterday and I had lots of kind people reply.

    I'm in a similar situation, I got "officially" diagnosed in May at the age of 67. As a child I felt different but for some reason I had high self esteem and quite liked myself. Like you, there were problems being with other people at school and work and I was bullied. 

    I haven't found a local group but I get reassurance from this forum plus a few YouTube channels - professional psychologists specialising in Autism. I learn so much about myself, and fellow autistic people who comment are supportive. If people can't go to a group, or can't find a suitable group yet,  I recommend the YouTube channels I follow.

    I don't know if that helps but I hope so. Take care and feel free to write or comment on the forum, it's brilliant.

  • Hi  and welcome Blush

    I understand what you mean about the group setting being mixed support needs. The group I attend is like this but I’m just glad there is a group I am able to join in my area.

    I must admit I did have reservations when I first joined I did think I didn’t belong there but as I have got to know people more it’s the most relaxed I’ve ever been in a social setting.  Everyone is different but underneath all the differences there seems to be a feeling of authenticity and shared understanding, which I haven’t found anywhere else.

    I realised a few days ago that I’ve never had a friend, I think this may be quite common amongst people with autism but it doesn’t mean we don’t want connection and given time I think it could be easier to maintain a friendship with someone who gets it.

    Wishing you wellBlush

  • I think I understand how you feel, a lifetime of feeling less and different but just not knowing why. I was just given a pamphlet after my diagnosis, I’ve looked locally for support groups, I start to read into them and they then mention support for the autistic person and their parents, oh another child based group.

    I’m okay with levels not being given after a diagnosis, it seems my needs can be different from day to day. I and many here have been told by GP,s that we were depressed and given medication, I found none of it made me feel better. Friends are better in quality not quantity, I do find I need longer periods alone. 

    Welcome and I hope you stick around, I’ve found this group to be the only place where I feel understood and not alone. 

  • Hello Fiona, 

    Looks like I might have the privilege of being the first to reply. 

    I am in my early 70s and have just been diagnosed.  There is an amazing similarity between your experiences and my own.  I too, am taking my time as there is so much to feel and think about. However, I have never felt more generally relaxed and at peace in my life.  Oddly, nothing seems like it has actually changed: the past is another place, the present is very much the same and the future quite unknown. I think that the only thing that has changed is I now have "a new ruler" to measure everything by. So, nearly everything has to be re-evaluated. As I said to someone recently "my shadow has at last caught up with me". I feel that shadow was my autism that was missing from hospital and doctor appointments, work, relationships, friendships, counselling and therapy sessions, etc.  It always kept its distance because I didn't quite know it existed. 

    So, I hope you find this community a good place to be. I do.

    Best wishes for your new future,
    Oscar