Saying Hello

Thank you :)

Hi Neil,

Welcome!x

Much love <3

Hmm. 'Self-understanding', eh? Is our frustration with ourselves because we don't understand ourselves or can't explain ourselves to others? What's that old joke? If the brain were simple enough for us to understand it, we'd be too stupid to understand it. What do you hope to get from autism research projects? General information, specialised tests or being a research participant? I've had some feedback from taking part as a participant... there are various psychological research programmes around: Cambridge, Cardiff, Canterbury, other universities beginning with C or not, plus you may like to sign up to Autistica's Discover programme which wants thousands of participants. Some may offer to give you feedback against the various scales, but some just aggregate your results with other autistic people.... and it's one of the few things where you do need a formal diagnosis, usually. It's possible they would do an ADOS test on you and never feed back to your medical records.

The benefits of a formal as against an expert informal diagnosis is currently not great. It probably wouldn't have much effect on benefits, which tend to be based around level of disability, and insofar as autism disables you, it can be hard for non-specialists to assess. I think people do have preconceptions about autism (don't like change or strong emotions, for example, and I'm not sure I have any problem seeing other people's perspectives, come to that) so I find if I tell people, they may either ignore the subject, or if they take it seriously, become slightly more patronising (people rarely explain things to me I don't already know)..

If you're around Reading, you may want to check out Autism Matters https://www.autismmatters.org.uk/ - Caroline does a course on 'exploring being autistic'. But did your doctor really mean understanding your neurodivergence, or understanding generally? Maybe that requires feedback from friends, or something like Mindfulness exercises. I can see why you want to seize the moment of moderate confidence and energy to deal with root problems.

Sure, in some ways my life is comfortable, and a relationship could well cause me more stress. My point is more that thinking of yourself can help you stop blaming yourself ('feeling bad about feeling bad') which is common in depression, but it doesn't actually change anything in reality.

You say you were finding IT jobs stressful. Me too, because I know I can probably write any code or fix any problem given time, but can find the amount of focus required disproportionate... or maybe that's not the reason and maybe I don't have enough self-knowledge. Would be interested if you can describe how those jobs affect you adversely - it might shine some light on my work frustrations. and suggest what you could be doing that was more satisfying.

Hi Otis,

I won't have anyone (as a member of the public) tell me that autism will hold me back. My attitude to setbacks has always to be to look at the opportunities that the problem inadvertently presents.
What this does mean though, is that I need to do a lot of research, and put my thinking cap on to see how I can turn this into a positive.
I am not working at the moment due to the depression, and my CV looks like a bomb has hit it. All I know is that I can't carry on working in computing in the conventional sense, as my psychiatrist thinks this is a major factor in my mental illness.

But overall the message you give is that a diagnosis of autism in mid-life has overall been of benefit to you. I'm very pleased to hear it, and find it an encouragement.

Thanks!

Thanks for the comprehensive reply Cassandro.
I've just had my second appointment with my psychiatrist, and he says that he is sufficiently confident that I have autism, that he sees little benefit in me going through the process to be formally assessed. I'm inclined to agree with him there, though I don't know what those benefits might be (speculating - perhaps you can get extra social security benefits if you are autistic - but I am sure I would not qualify as I have too much money saved in the bank).

My emphasis at the moment is to get better from depression and anxiety. My doctor has increased one of my medications, and I am currently free from depression. However the medication is a benzodiazepine, which exhibits "tolerence" meaning its effects last only for a limited time. Therefore I cannot regard myself as in any way cured of depression unless or until I can benefit from the psychological benefit of the diagnosis of the autism. So in a way I am in a race against time.

What my doctor wants me to do now is to do a course on "self understanding" for "high achievers" (his words, not mine!). But he does not have a specific course in mind, and has left me with the task of finding such a course. I have emailed Reading University autism research dept, and the national autism society, and am awaiting any feedback. But other than that, any courses that I have seen advertised tend to focus on training carers and parents of those with autism, or help those with autism cope with life better. Nowhere is there a specific course on "self understanding".

Any thoughts?

Addressing your points, you claim that your life is "a bit rubbish", and claim to have "missed opportunities". But isn't one of the characteristics of autism that one finds it harder to see things from the other person's point of view?
So although you characterise your life as a bit rubbish, perhaps there are aspects of many or most other peoples' lives that you don't see that similarly bring down the quality of their lives to a "rubbish" level (as you would define it). For example many people are in relationships - this might make their lives seem to be better than the lives of single people. But are they really? People in relationships are caged animals - they can only do things if the other half also wants to do the things - that would reduce the quality of my life considerably I would think.

Oh, and as for telling people I have autism, I see no problem with that at all. You wouldn't refrain from telling people you have a broken leg, so where is autism any the different?

Hi Neil, welcome to the forum. Thanks for taking the time to share your experience it is greatly appreciated. In response to some of your questions starting with the diagnosis.

I found that being diagnosed a couple of years ago really insightful and the more help and support received. I have developed more in sync or touch with my mental health. For those, who don't know I am also diagnosed with bipolar disorder and OCD.  I have a better outlook on life now than I ever did before.

Not just talking about my aliments but also coming to terms with the process, ongoing help and support and just accepting it. Yes, it is a part of me but overall it doesn't reflect me as a whole. I owe it to myself (not for others) that I am a 'somebody' or I am 'worth it'. 

In relation to the lead up of being diagnosed with autism. It has encouraged me to try new things as I had to realise as much as I am comfortable doing the same thing; I realised I have to explore different things in life to make myself more involved or included in other areas which I hadn't experienced. For me, it was about making small changes and seizing the opportunity when possible.

At the same time, I told myself that I am not going to let my condition hold me back or stop me. I had to show that I am worth my weight in gold. I feel as though I have done myself reasonably well with volunteering with local communities with an elderly care or young people setting.

Sometimes, the nerves do get the better of you but that is what makes us human beings. It is natural to feel anxious in unfamiliar situations. From my perspective, I wouldn't say autism is a bad thing if anything it has given me clarity, hope and a sense of determination and willingness to pursue my dreams and ultimately make the fantasy into a reality.

I always had the 'talks' because I have autism that I would just have to settle for less and things wouldn't proceed further. In turn, I was led to believe that I wouldn't have a decent life or those little things some people take for granted. There will be times where things don't go to plan. On the other hand, things aren't always as bad as it seems at first. It does take persistence, time, courage, patience amongst other numerous things.

There is nothing you can't do in life. As an autistic person, I had to take ownership of that and realise if things can work with those are non-autistic...then why can't it apply to someone who is autistic. Yes, there will have to be adjustments or changes put in place.

I hope that you have found this useful and I appreciate (as do others) for taking the time to share your moment.

Hello, Neil. I've also suffered depression for many years, and it was in part the complete ineffectiveness of treatment for that that led me to seek assessment for autism/AS.  It sounds like you have a good doctor, but are you going to be formally assessed? That involves a second opinion.

The general view I come across, particularly among those diagnosed in mid-life is that a positive diagnosis does help them understand things and be more authentic and comfortable with who they are, and so less anxious and depressed. So autism is not in itself a bad thing, but people's attitudes to autistic characteristics are one of several social barriers that prevent autistic people living a full life. Having said that, though, it's only partly true for me, because my life is still a bit rubbish, and knowing a bit more about why I've missed opportunities in life doesn't alter the fact I missed them. I'm still not getting any effective help with my quality of life, or to find a better use for my skills, such as they are.

Perhaps it's because I can't define what I 'want to achieve in life' that people are having a hard time helping me. I suspect you are more 'conscientious' (in personality terms) and organised than I, so your outcome may be better. Docks in the forest I've found are some social activities for the likes of me and potentially adjustments at work, Prevalence of mental health problems among autistic people is cited as 66-80%, but I'm not sure if there are any stats on whether that declines after diagnosis. You might also be interested in, for example, a thread I started:

http://community.autism.org.uk/f/adults-on-the-autistic-spectrum/12470/has-thinking-of-yourself-as-autistic-changed-your-social-behaviour

Welcome to the forums. Do dip in wherever. I started trying to meet other 'aspies' before my formal diagnosis.