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Diagnosed with Aspergers Syndrome two decades ago. Now what?

mp500

I've lurked around this website for quite some time as there are some interesting and useful posts, but I only registered recently.

I was diagnosed with Aspergers syndrome two decades ago as a teenager. I was very socially isolated and lonely at the time, and being labelled with a mental illness (or whatever you want to call it), and being bullied because of it by teachers and family, only made me more isolated and depressed, and ultimately drove me to the brink of suicide.

I somewhat made up for this by trying to brush it under the carpet and focus on interests as much as I could. I went to college to study engineering, and whilst I enjoyed the subject and learnt a lot, the loneliness and depression were hard to deal with. I had a few unsuccessful jobs - the only job which went well, I got sacked from because I made the mistake of filling in an "equal opportunities monitoring form" and told them about the diagnosis. They seemed to be rather disgusted at the thought of having someone with my incurable disease working there and advocated claiming benefits instead. So that's precisely what I did, and got £20/week more! Haven't worked since.

I took anti depressants for quite a few years but stopped them a couple of years ago due to the unreliability of doctors. I suffered withdrawal effects for quite a while. Nowadays I'm still depressed. I am very tired practically all the time and can seldom concentrate on anything. I've no idea if this is because the depression returned, or if it is an effect of taking the medication for so long. 

I really miss the days when I wasn't tired all the time.

I live with my unsupportive mother, who is the one who forced me into being diagnosed with AS and took great pleasure at seeing me being treated like an invalid because of it. As we are both effectively 'retired' now, I am stuck here with her pretty much 24/7. I've been desperate to find a job for the last few years, but have not even made any applications as there are so few jobs [advertised] in my area. I'm not sure I could even physically manage it anymore due to the tiredness.

To the best of my knowledge, there are no NHS services in the area for Aspergers Syndrome. I did manage to see an autism-specialist counsellor a few years ago, but that was private. I keep pondering registering with a GP again, but I haven't got round to it.

So, what do you do after all that? I never really anticipated spending practically all day every day stuck in a dark room with the curtains shut and no one to talk to. I always figured that if I hadn't died by my early 20s, I'd probably have managed to have some sort of career and relationship. Instead, I'm stuck with a family I don't talk to, claiming benefits, and celebrating a job well done if I manage to carry a basket around Tesco without feeling like I'm about to collapse!

Thanks for reading.

  • Hi and welcome to the community.

    I'm very sorry to hear of your struggles, both currently and in the past.

    I'd definitely recommend seeing a GP, both for help with your current issues, but also to discuss (albeit very belatedly) organising a personal support / care plan for you, per NICE guidelines. (The plan could include, for example, referring you to a social prescriber).

    There's some further information here, including a link to a template letter that you could instead send the GP to request that plan:

    NAS - Formal support following an autism diagnosis

    You might also find these articles helpful:

    NAS - Autistic fatigue and burnout

    NAS - Loneliness

    NAS - Making friends - a guide for autistic adults

    Again, welcome - and I hope you'll stick around here, even if only in lurking mode! :)

  • There are lots of first new posts, and I have been away for a while.

    I just want to say welcome. You are amongst friends.

  • in reply to Iain

    If I have managed to write a 'significant' amount of wrong information about my own 20 years of lived experience, I can only apologise. I know in this day and age of the "autism is a superpower" BS, my own experience is hardly 'politically correct', but then, real life seldom is. And unlike for those who have been diagnosed recently, political correctness hadn't really infected the autism/aspergers world 20 years ago.

    I'll keep Understanding Autism for Dummies in mind for the future. I got Aspergers Syndrome for Dummies quite a few years ago and that was quite a good book. 

  • Hello and welcome to the site.

    I see a significant number of bits of wrong information in your post about Autism (or Aspergers which is under the same category) so I think you would benefit from reading up on the subject. A good, easy to access book is:

    Understanding Autism For Dummies - Stephen Shore, Linda G. Rastelli, Temple Grandin (2006)
    ISBN 0764525476

    A few notes may be of use, but as I am just some random from the Internet then don't take what I say as fact without checking.

    1 - antidepressants are not very effective for the majority of autists/aspies. Finding better coping strategies such as mindfulness is a much more effective way of dealing with this.

    2 - Support for autists is pretty limited at best. Look for local autism organisations as there may be more out there than you think. Check the directories on this site and search online.

    3 - for jobs, what useful skills and knowledge do you have? We may be able to offer some suggestions.

    4 - your experiences are very common for an autist - many here have reported much the same thing so you are amongst kin here.

    5 - The correct term for autism/aspergers is a neurodivers condition. It isn't a disease or illness as these can be cured, a condition is permanent. It comes from your brain developing differently to most others and when they were able to switch off a lot of the sensory inputs when they were young, we weren't. leading to us experiencing a sensory overload most of the time.

    There is loads we can talk about but for best results what is the most pressing issue for you and we can work through it first and offer some ideas if you are interested.