Coping with a new diagnosis

That was a wonderful post, Peachi.

I'm three months into knowing my diagnosis, and your description of having to kind of "unlearn" the old me and "learn" a new one completely rings true.  I've just seen my counsellor this morning, and we were talking about very similar things.  Coming to terms with the past really is only "step one".  At the end of the session, we came to the conclusion that the next step is rather like being a teenager all over again, trying to define who we are and how we'll try to present ourselves to a world that we don't quite understand yet.

Hi Jam1,

Thanks for responding. I am sorry you're going through a similiar thing to me and struggling with the diagnosis, it's not something I'd wish on anyone as it's pretty tough.

My husband asked me the other day as to the reason I am struggling to reconcile with my new diagnosis, he said that surely now I know what the problem is I would be happier with an answer? Whilst I do agree with him for the most part and I can understand his viewpoint, I still feel he's missed the wider issue here and once which I have only spoken of once or twice with him. I tried to explain to him (rather poorly as I was having a mute day) that I have spent 31 years thinking that there is something inherently wrong with me, that I am a bad/evil person, that I am a sub-human. Why don’t I cry when I see photos of a dead baby migrant on a Turkish beach? Why don’t I get upset when my work colleague in front of me is visibly hurt and distressed? Why do I tune out of 99% of conversations I am having with people? Why does being around other people cause me physical pain? These types of questions have been in my head for as long as I can recall cognitive thought, and have formed almost part of who I am. Couple this then with some people’s perception of me (because I can be very distant with people and because I am not good with people I have been called every name under the sun..."stuck up ***, rude, ignorant, arrogant, elitist" etc) you have a recipe for very negative thoughts about yourself, to the point where I have questioned am I actually a sufficient human being??

However...then my diagnosis comes along and there is an explanation for all this ‘odd’ behaviour; I’m not a bad person, I’m not evil, I’m not inherently terrible…I am high functioning autistic! Suddenly the world I knew and had basically come to accept has been blown apart and replaced with a world where I am a good human just slightly different to other humans! This takes some adjustment, it takes some getting used to; you can’t expect someone who has conditioned themselves for 31 years to think one way to then suddenly accept a diametrically opposed way of thinking and be totally cool with it…that acceptance takes time. I think maybe this is where I am personally struggling with my diagnosis, coming round to this new way of thinking is proving a challenge as it’s turning everything that I thought about myself on its head. I am viewing things/situations now through ‘autistic eyes’ in order to understand that my way of thinking about/seeing something isn’t necessarily bad or that it makes me evil…it’s just I have seen/though about something in a bit of a different way to other people. This acceptance is taking time, and I am only about 6 weeks into my diagnosis…but being the person that I am I am desperately trying to make sense of it all, create some order for myself and box it off in such a way that I can comprehend it.

I’m not sure if any of this has made sense and it may just be me that thinks like this. However maybe some of this resonates with you and helps you see you’re not alone with the diagnosis struggle!! There are many other facets to my struggling with this diagnosis, however this is the primary reasons for my personal struggles and I feel once I have a better handle on this then maybe I will be in a better place.

I also don't know how this sits with you and I am certainly not recommending it as you may be very different to me and would need to discuss it with someone more professional than me, but I have found that taking herbal extracts have helped calm my mind. I take St Johns Wort as a bit of a mood stabiliser and I take Saffron extract to help calm my anxieties (which are extreme to say the least!) I wanted to try something that would maybe help me but without taking proper medication and my doctor suggested I try these, and I must say they have helped me quite a bit.

Well drew finally got his diagnosis letter for asd and I am

Kinda gutted how small the report is one page of basically short notes !!! So where dose the bit Come with detail can't believe this is what I've been waiting on X

Hi Peachi 

You say you sought a diagnosis because things were starting to build up and you couldn't live with things as they were. So I wonder if it's the diagnosis you're struggling with, or a continuation of the difficulty in coping with life which it seems had begun before your diagnosis? 

I'm a 55 year old female and I've recently found that I'm an "aspie" after a period of high anxiety and depression. Reading about the Autistic spectrum and joining this community has helped me start to understand myself and why I feel and sometimes behave the way I do. I am now feeling a lot happier, but I believe that's down to me taking the following actions:

1. Talking to my husband, a GP and a few trusted friends about how I've been feeling and what made me anxious and depressed. Others have opened up about how they get anxious in certain situations, making me feel like I'm not alone. A colleague has also told me that her sister has just been diagnosed with aspergers. 

2. Joining this community and voicing a worry that I had - of being told by the doctor that I don't have aspergers and therefore not having any explanation for why I was feeling like I did, and getting responses which calmed my fears. I realised it doesn't matter - whatever happens, I'm the same person I've always been and I know that I experience life in a similar way to other people in this community. 

3. Noticing when I'm starting to get anxious, upset or obsessed and taking a few moments to reflect why and calm myself down. For example, today a colleague came to ask me about a work matter when I was just about to leave to go home, which held me up and made me miss my bus. I started to get stressed, but when no other buses from the bus company I had bought a return ticket from this morning had arrived after 10 minutes and a bus from another travel company arrived I said to myself "Don't hang around waiting any longer and getting more stressed - pay another £2 for a ticket to get home on this bus!". So I jumped on the bus and continued talking to myself in my head, reasoning how it didn't matter if I was a few minutes late home and thinking about how nice it would be to relax with my husband when I got there. I wouldn't have told other people about getting stressed about missing a bus before, but I'm mentioning it now because I think that it happens because I hate my schedule being changed, or things not happening when I expect them to, and being on the spectrum explains this, so I can tell myself why I'm stressed and attempt to calm myself - a sort of self counselling. 

I hope things get better for you soon and that you find better ways of coping. 

Many thanks to you Peachi.

Thank you so much for your response as this has been enlightening and more helpful than you know. You've manged to eloquently put into words exactly what I would like to say and reading what you have written has seemed to make some more sense to me.

Yes...I do now view things through the 'prism of autism' and maybe that is where some of the confusion I am experiencing is coming from; maybe I am trying to assign a meaning to this when there really is none? I think I maybe need to try remember that viewing things in this way is actually no different from how I viewed things pre-diagnosis...because I haven't changed a bit, I just have a recognised name for my odd way of viewing the world!

Hi Moondust,

I used a private company called (DELETED BY MOD*) and they offer a full adult autism assessment for between £2,000 - £2,500 (on the more expensive end if you require medication). Expensive but worth doing in my opinion!

*  Hi, I appreciate this was not a direct advert but it is very strong promotion of a business. I  this case we have decided to deleter the reference. I hope you will understand. NAS Moderator Bob

Hi Peachi,

I'm 46 and have been considering being assessed. You mention you were privately assessed. Do you mind telling me by whom and the cost etc? I didn't want to go down the other route having done that with my two sons. 

Thank you. I hope you don't mind me asking.

I think a diagnosis brings good and bad things into your life. These things need to be balanced in order to feel okay. 

From my perspective, it's been positive because it explains what's been the problem all my life and I don't feel like a weird freak person anymore. I finally have a 'community' that I belong to and I have a place in the world. 

On the downside, everything that I experience now is viewed through the prism of autism and I find myself explaining my experiences within myself, not as myself, but as an autistic. I feel a little out of control as though, now this 'thing' is out in the open and has been identified, it's become a constant companion and reminder that I'm different. 

You have to kind of re-define yourself and learn to like and get a handle on the new you. Incorporating newly identified autism into your being takes time and patience I guess. One thing though, you'll never be the same again and you will need to find ways to move forward with this. It's not a negative thing, just different. Once we discover this about ourselves, there's no going back.

Hi Peachy,

i m in a very similar situation. recently learnt that this there is a label for my personality and experiences. It came out of the blue and feels surreal. Don't know what to do. If anything needs to be done. Or should I say "nonsense" and continue as I was ?

I wish I knew earlier. It would have saved me a lot of unnecessary suffering. But then i probably wouldn t have pushed myself so hard and would have achieved less. it s all in the past anyway. What do I do with it now ? It s bizarre. I keep processing. Can t process it. stuck in the process of processing.

1. It is just a label. I am still the same person. should I disregard it ? I heard a lot of things about myself. Do I have to accept all of those opinions ? Diagnosis is an opinion. 200 years ago it would have been "witch". Today it is "a sperger's or high functioning autism". when I was little it was "gifted", "lazy", "stubborn".  tomorrow it can be anything. They shift paradigms around me, I don't change. It s all BS.

2. ok, I accept. What then ? Notify the whole world ? Ask everyone to make adjustments for my invisible disability that they wouldn't even believe is real ? Because there is nothing visibly "wrong" with me. is it worth disclosing when i don t have any "proof" for the outside world ? What would be the point ? I can tell I have wings, they are just invisible. Same level of credibility. he come we never saw your wings? Well, it was recently discovered that I have them...

i don t know what to make of it