Coming to terms with (most likely) having autism

Hello all, 

Please bear with me, as I find internet communication pretty unbearable (as there seems to be such a tendency toward hostility and general cruelty via written media - which both cause my nervous system to go into major overdrive and my body registers this feeling as physical pain). 

Over the last 3 years, I have been more and more convinced of a possible ASD diagnosis for myself. I am 32 years old and my older brother was diagnosed with ASD at this age. My 6 year old niece also seems to display some quite significant traits. 

I went to my GP last week to try to describe to her the physical pain symptoms I experience and to see if she had any idea what might be going on with me. She noticed that I was struggling to describe exactly what the pain was, where I was experiencing it, and what might be causing it. She also noticed that I struggle to keep eye contact (even though I was actively trying to make eye contact and actually felt like I was doing a good job at maintaining it during our conversation! Ha) 

The pain is basically this: 

In response to interacting with others, especially if I am making lots of eye contact, or if the conversation feels hostile or strained, or if I overdo social interactions and get overexcited, I end up extremely fatigued and it can sometimes feel as if I have broken glass in my nervous system - especially in the centre of my body around my chest and stomach, which then radiates through the tops of my arms and legs. It is very difficult to put this pain sensation into words and to describe it accurately. It can be so bad that I have to control my breathing in order to endure it. 

I tried making a lot less eye contact when I was socialising on Sunday, and I noticed I had a LOT more energy than I normally would after something like this, and my emotions felt far more regulated. Normally my mind is all over the place after this particular social activity I do each week for a couple of hours. I do, however, feel conscious of the fact that not looking others in the eye feels like I am being rude and not listening to them - even though I probably listen better and take more in of what they are saying if I am not making eye contact. 

I went through a very stressful two months recently, and I noticed myself unconsciously flicking out my left had (sort of flapping it) in order to try and shake away the pain in my nerves. 

The pain will usually pass if I can focus my mind on something else that interests me. 

I heard someone talk about 'shut downs' with ASD and it seems to resonate with my experience over the last 13 years. I have had around 5 or 6 major emotional shut downs in that time, which have led to periods of 6 months or more of being incapable of working or doing much interacting with others. The last one I had started about 3 years ago and I feel I am only just starting to come out of it. There was such physical pain involved in my emotional response to a stressful work situation I was in at the time, that I felt it had caused me a form of PTSD. 

I realised recently that I don't really understand why certain things upset me - and I can only really know that I am very upset about things because I experience this physical pain whenever I think about those things or have to interact with the person who has upset me. When people ask me why I am upset, I really struggle to explain exactly why, but just know that I am upset/disturbed. 

I love routine, and having pretty much every hour of my week planned out on a wall chart for different activities that I like to do. When I can keep closely to this routine I feel great calm and stability. I can alter from the routine when needs require, but I would rather not alter from it at all. 

Reading fiction also seems to help me to regulate my emotions. But I did an 'Do you have autism test' online (which came back as highly likely to have it) and one of the questions asked me if I picture people's faces when I read fiction. I had never thought about it before but I realised that I don't picture faces when imagining the characters (not unless it is a book that is also a film and I have seen the faces on the film before reading the book i.e Lord of the Rings etc).

I find great comfort in collecting information on subjects that interest me, and have collections of literally thousands of pictures of different art I like. I also have a written list of about 100 books I am hoping to read, in chronological order of the years they were written. 

Does any of this resonate with anyone here with ASD? 

My GP has referred me to a thing called the 'Recover Education Centre' in Dorset. They offer some courses in ASD and managing pain, setting healthy boundaries etc... She seemed reluctant to refer me for diagnosis and seemed to be pushing me more toward these courses (which I am happy to do, but I would like to know if I have ASD as it would explain an awful lot that has happened in my life and would also help me to manage better going forward). 

In people's experience, are GPs reluctant to send for a diagnosis (even when they have put in the notes of the visit that they suspect possible ASD)?

I am very tired, and very stuck. I can't bear the thought of having another 'shut down' that was as painful as this most recent one. I want to get on with life, but feel pretty hesitant to take on too much due to the intensity of the physical pain these episodes cause me. I haven';t been able to work for the last 3 years and am signed off as long-term sick by UC and PIP. 

Any thoughts and/or guidance would be greatly appreciated!

Parents
  • I'm self diagnosed and I think you can self diagnose as autistic too if you feel like it's helping you or might help you and there's no need for official diagnosis when it comes to knowing yourself and no need to wait, though you can still do that too and it might be easier for some people that way.

    Your experience with the pain is interesting. I've also had a feeling sometimes that I can't explain at all, it's not pain though, it's like a very ugly and dirty sensation in my stomach, I think it happens when I'm way too aware of my body or too close to others, might be gender dysphoria too.

    I also used to get extremely tired of social situations and I'm still a bit scared of them. Before diagnosing myself as autistic, after each social situation that involved more interaction or new people or new things in general, even if the whole experience was positive, I would go to bed and have extreme suicidal thoughts, and only when I would go to bed, no sign before that. I still don't know if they were melt downs or shut downs...It was just so consistent that I just knew that my choice of going to this social event would end badly but I kept making that sacrifice. Fortunately though, that hasn't happened again after my self diagnosis. 

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  • I'm self diagnosed and I think you can self diagnose as autistic too if you feel like it's helping you or might help you and there's no need for official diagnosis when it comes to knowing yourself and no need to wait, though you can still do that too and it might be easier for some people that way.

    Your experience with the pain is interesting. I've also had a feeling sometimes that I can't explain at all, it's not pain though, it's like a very ugly and dirty sensation in my stomach, I think it happens when I'm way too aware of my body or too close to others, might be gender dysphoria too.

    I also used to get extremely tired of social situations and I'm still a bit scared of them. Before diagnosing myself as autistic, after each social situation that involved more interaction or new people or new things in general, even if the whole experience was positive, I would go to bed and have extreme suicidal thoughts, and only when I would go to bed, no sign before that. I still don't know if they were melt downs or shut downs...It was just so consistent that I just knew that my choice of going to this social event would end badly but I kept making that sacrifice. Fortunately though, that hasn't happened again after my self diagnosis. 

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