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Coping with a new diagnosis

Peachi

Hi all,

(I'm totally new to this community so please bear with me!)

I am a thirty-one year old female and I have just received a very new diagnosis of having High Functioning Autism, with the added super ability to mask my problem and present myself to others as being completely un-autistic. I have always suspected that there was something 'a bit odd' about me, and my parents suspected I was on the spectrum when I was a child (they didn't have me formally diagnosed when I was younger as they didn't want me to grow up with a label and act up against it.) I have paid to be assessed privately as things were starting to build up in my life to a point where I really couldn’t live with things as they were and I needed to try get some answers. So...here I am with my brand new diagnosis and although in many respects I am finding it a huge relief, in other respects I feel like I am really struggling to cope with it.

It seems that I can't make sense of anything at the moment, the whole world is confusing me and that things I once understood are baffling me. My life that previously made sense and which had an order I was happy with now seems alien to me and like I am learning it all over again. My usual coping mechanisms (activities such as running, walking, reading, writing etc) are just about holding me together but even these things are not fully doing for me what the once did. Since my diagnosis I feel like I am fighting that much harder to understand things, situations, people and life…my brain is stuck on a spin cycle and I can’t get it to stop! I have always felt like I am living my life 'behind a piece of glass' not able to interact with the world and others; now I feel that even more keenly. I feel isolated, lonely and just generally adrift, like a ghost in a crowd. It's impacting how I feel about my work (I have a successful & high pressured job with a very large organisation), my home life (I am very happily married with a comfortable home) and life in general (I am physically fit, healthy and usually pretty happy). I have a fantastic support network around me in terms of my husband, family and understanding friends, however I still feel like I am struggling to get back to being me and how I used to be.

I really don't expect anyone to give me the answer to all my woes, but I wonder is there anyone out there that has gone through/is going through a similar thing to me? Are you feeling the same as I do? Have you had a recent similar diagnosis? How do you get by/cope? Do things get a bit easier? How have things changed for you? Any help, advice would be welcome....or just to know that I am not alone in this would be equally as nice.

Thanks guys x

Parents

  • 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.

Reply

  • 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.

Children
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