Published on 12, July, 2020
Hello everyone. I am new in the community and I hope this is the right place to ask these questions.
I am a 30y.o. man and I have been wondering for years whether I might be on the autism-spectrum, albeit high-performing. I come from a very low-income and uneducated family who always avoided psychological guidance like poison. So I was wondering if it is common for adults to not be diagnosed early in life, and if it is possible to self-refer for a diagnosis though a GP (in the UK). Also, I would like some opinions from people who have come across similar experiences as mine, to see if they relate of if this is just a paranoia of mine.
I know autistic conditions are a very serious matter and I hope my question does not come off as inappropriate. I fear I might just be someone who is projecting his issues on a much more serious field. But I cannot sustain the doubt anymore, and I keep seeing the same patterns in my behaviour over and over. So I am hoping for some compassionate feedback. I am going to summarize my experiences here in case anyone wants to help me interpret them. I am not seeking for a diagnosis online, obviously, but some external and informed perspectives would be good. I apologise in advance if this post becomes too long.
So please stop here if you wish to reply just to my general questions without going into my personal details. ------- Here goes the long summary:
I have always been socially-awkward, inclined to seeing patterns in things and people, and to retreating into my own imagination. This helped me achieve good academic results and I am currently pursuing a PhD. My life seems formally on the right track but I am finding it harder and harder to relate to people and maintain 'normal' life skills, because I have a need to see 'order' where there seems to be none. Responding to unexpected commitments and problems, complying with others' schedules, and maintaining a flexible timetable are profoundly upsetting experiences for me. I am perfectly able to do those things, but the emotional repercussions (anger, disgust, even spite) do not go away and are possibly increasing.
I have also been experiencing depression for four years (or more). So this might be distorting my judgment. This condition has been caused by an unstable family condition and worsened by financial difficulties. But I have frequently wondered if my anxiety and depression are also related to my inability to connect and my constant need to analyse patterns: when I see structures coming apart, I get very nervous and angry, and later on completely despondent. I find it hard to receive emotional support on this because nobody seems to understand what really upsets me. People tend to just say that that's how life is, and I grow even angrier and their widespread acceptance of pure chaos.
Here are some common behaviours and feelings of mine that make me suspect I might be on the spectrum. I find it hard to understand when people are joking or using sarcasm, and I get really confused (or angry or despondent) when they are vague. I can understand those things, but it takes me conscious reflection, and people have often noticed it (they remark on me not getting what they mean, or they sneer and roll their eyes). I have been told that I tend to be very outspoken about people, although I never really noticed and I think of myself as nice and honest. People often tell me I am strange or unusual in my behaviours and habits as well. However, I am capable of being compassionate and people do seek me for comfort at times, because I am always nice and non-judgmental (albeit outspoken) and because I am good at analysing situations. I find social situations very stressful and I try to avoid any event that includes more than 5 or 6 people. However, I am capable of attending such events and I even have fun at parties or (with some difficulty) dancing events. I form very close and selective connections with few people, so their presence encourages me to do things that would otherwise upset me. But every time I go out, no matter how much fun I had, I feel drained and I have obsessive afterthoughts and regrets afterwards. I always put up a mask to interact with people, namely I analyse their behaviours and create a persona that suits the situation; I am seldom capable to act spontaneously. I am spontaneous (and I relate) only when I talk about dreams, plots from books and movies, philosophy, or other theories. Small talk feels artificial and faked. I used to enjoy drama and role-playing games, but even those are difficult for me to pursue with novel groups of people. I also have a tendency to see patterns. I mean it quite literally, I visualise things very intensely and I find subtle connections with an easiness that most people find surprising. Sometimes I see patterns as moving. People have remarked on my visual mode of thinking repeatedly. I also have a very strong memory, which usually surfaces in a quasi-visual way. I dream very vividly and a few times sleep-images have appeared in my waking life (just after waking up, though - no persistent hallucinations). During my studies and PhD I have come to 'see' connections among textual elements or among images (I work on imagery) with increased frequency. My best thesis chapters are works that tease out very elaborate structural connections that had gone totally unnoticed (to my dismay, because they are vivid to me). The upsetting part is that, when things don't connect I find it emotionally and physically upsetting (it's like an itch). When things connect, I find like a compulsion to work out the full extent of their connection. But I also get bored quickly: once a puzzle is solved, I crave for a new one, i.e. for broader intellectual connections. People have also remarked, often, on my tendency to want everything to fit perfectly. I have a very physical urge for completeness, symmetry and balance.
So here are my physical or behavioural symptoms. I have physically displayed a tendecy to over-organise things. I like them to be symmetrical, centred and balanced. E.g. I get upset at half-closed cupboard doors. I play at balancing things and while people find it strange, they also find it funny (I love when they relate to the fun). On the other hand, I can be very messy. When I am incapable of keeping things in perfect order, I prefer to ignore them and I just let confusion increase, until I am not able to ignore it anymore and I go through an organising spree. My memory selectively filters out everything that feels disorderly. Connections of sounds also feel fascinating; I love to invent words and when I am very stressed I sing or mutter nonsensical word-associations. I also feel bodily discomfort at sensations that feel wrong. I tend to keep my tactile sensations (heat, texture, pressure) as symmetrical as possible. I often feel the urge to squeeze my face, hands, bend and squeeze my arms etc. I have always rejected a lot of foods because of their texture or temperature. I can suppress these behaviours because they are socially awkward, and in fact they were a huge cause of derision in my adolescence. Throughout the years I have trained myself to ignore these urges, but it takes enormous effort of self-distraction. When in situation where I can't distract, the obsessiveness kicks in again.
This pile of difficulties and my tendency to feel comfortable and valued only in very specific situations (studying, talking about specific subjects with selected friends) have become very difficult to manage, once I started to live on my own five years ago. But again, maybe I'm just piling up all my negative experiences just because I'm depressed. I see a correlation between them and depression, but I don't know which caused which.
I have tried an online test on a website that seems reliable ('aspergers test site') and the scoring definitely suggested I should get a medical test.
As I said, I'm not looking for a diagnosis here. Still, some feedback would be nice. Does it look like I am exaggerating things, or is there a reasonable chance that these might be serious symptoms?
I was diagnosed in my 40's. It is becoming increasingly more common for people to be diagnosed with AS in later life due to improved diagnostic techniques and increased awareness of the wide spectrum AS encompasses.
Unfortunately some GP's are less up to date than others and so @Taltunes is right in that it's advisable to prepare to have to convince your GP as to why you believe yourself to have AS and want a diagnostic assessment. One way to do that might be to print what you have written above and give a copy to your GP. If you have trouble obtaining such a referral from your GP, there is advice elsewhere on this website as to other avenues through which to pursue an assessment, including your right to ask for a second opinion or simply make an appointment with another GP.
I recognise myself, and the increasing difficulties which led to seeking my own formal diagnosis, in most of what you have written in each of the six paragraphs of your summary. Some of the things you have described I wasn't aware were part of AS until after my own diagnosis which prompted me to research the subject much more fully.
One question your GP may ask is, Why are you seeking a diagnosis / What difference would it make to your life to know one way or the other? (Considering there are no 'treatments' as such.) It appears that you have given this a lot of thought and have your own reasons, it is just advisable to prepare to justify these to your GP.
For myself, a formal diagnosis allowed me to confidently apply approved and researched coping strategies in the knowledge that I do indeed have the condition / symptoms / difficulties they were designed to alleviate. To understand myself better, in short.
I hope this helps. Good Luck!
Hi Endymion!
Thanks for your detailed answer! It was really useful; it supports other resources I've found online, plus it summarises ideas clearly enough to make a concise case for my GP.
Also, I'm really glad you've read my whole post and I feel so reassured knowing that you recognise those experiences. I'm still very doubtful about my condition, but since the recognition does not come from myself alone I can be more confident.
Would you mind if I asked what your story is? I am particularly worried about the whole 'sensory overwhelm', 'meltdown' and 'visual memory' aspects because, although I can relate at least in part, I still feel uncertain about them. So I'd like to go on chatting about them, if that's ok.
Btw, cool nickname. I should have picked a mythological character as well! ^_^
I'm glad you found my post helpful, some of it is based on my own experiences (my own GP was receptive to the idea and my assessment appointment arrived less than two months later) and some on the experiences of others that I've heard repeated often enough on this site to know that they're the more common experiences in seeking a formal diagnostic assessment.
Re. 'sensory overwhelm':
You described in para.3 your feelings of discomfort in crowds and I can relate to this in that I feel sensory overload in social situations where I am surrounded by a crowd of people. I don't feel 'in' the crowd but very much 'surrounded' by it in an uncomfortable, almost suffocating sort of way. (This is a physical feeling and has nothing to do with how close or otherwise I feel to the people as individuals / emotionally.) At parties, for instance, the loud music (if I stay long enough) begins to separate or stretch out, as if I'm hearing it in slow-motion and certain jarring notes can actually become painful.
Simultaneously, background voices begin to do a similar thing but in a different wavelength, low and deep like drumbeats you can feel in your chest only far less pleasant! Unlike with the music though, sudden peals of laughter 'peak' the sound suddenly and uncomfortably which makes it 'fast-forward' or 'speed-up' in such a way that it sounds like cartoon chipmunks for a few seconds before 'dipping' again to the low, stretched-out rumble. At most parties that's happening every couple of minutes and each time it does it feels like 'nails on a blackboard' so I become more and more tense trying to steel myself against the next one.
During ALL of that, I'll be trying to participate in a conversation with one or more people, with all that THAT entails! This is how I experience sensory overload at parties or in large shopping centres etc. Does any of that correlate with how you experience these things? I don't actually know what other's experiences (broken down like this) of sensory overload are like but I too would be interested to find out!?!?!?
You also mention many examples of sensory overload in para.5, which I can relate to and would be happy to discuss to see if how we experience these things is similar.
I think the whole process can be painful in many ways. The frustration of "What's wrong with me, why can't I just ...", the surreal experience of recognising very personal and private parts of yourself in a symptoms list "Wow! Other people do / think this way, too?!?!" and yes, the denial "Disabled? Of course I'm not disabled!".
I think we do go through all of the stages of grief before, during, and after a formal diagnosis and I do believe it is entirely normal. (I think I've even repeated a couple of the stages!) Partly I was grieving for the years I figuratively beat myself up over miscommunications, told myself off for 'being weird', and forced myself into situations that I thought I 'should' want / enjoy whilst knowing all the time that I didn't. It is depressing to think of all of that time wasted while I didn't know that I had Asperger's but it's also completely illogical and unhelpful.
The fact is, I didn't know and I tried my best on all of those occasions over the years with the information that I did have available to me. They were all learning experiences and all contributed to the person I am now and that ... well, that person is someone I happen to like and have gained a lot of respect for. Especially in light of my fairly recent (January) diagnosis.
I can agree with your friend's rejection of pathologising quirks and traits as I too have felt like this. My love of and ability to completely switch-off whilst reading, which apparently I do to a far greater extent than 'average', was actually called "Reading behaviour" during the course of my assessment which I found ridiculous, shocking, hilarious, and extremely dubious! It made me question the credentials of my assessor and therefor my diagnosis at one point.
The way I see it now is that I am simply me, all of me. Quirks, traits, behaviours and all. Asperger's is as intrinsic a part of me as my 'weird' aqua coloured eyes but they're not an Asperger's quirk, they're just a 'me' quirk. The 'Experts' themselves still don't have a full picture of Asperger's and I refuse to pathologise every aspect of myself based on an area of science that's still in it's infancy. I refuse to hand myself over to 'services' as an entirely disabled person because that's not how I see myself, that's not who or what I am.
My reading doesn't 'disable' me, my love of lists and order in my environment doesn't 'disable' me, my relative (compared to 'normal') lack of social connections doesn't 'disable' me and so I don't seek 'services' or help for those things and others like them that I see as simply intrinsic parts of being me - regardless of whether some book or expert says they're my Asperger's traits.
I will seek help (more likely information and support than disability 'services') for how I cope with sensory overload, for recovering from burnouts, and for the other aspects of me / my Asperger's that I do feel have had or are having a disabling effect on my life. Not necessarily because I feel that I'm a disabled person (I don't!) but because I want to learn how to prevent or mitigate the disabling effect these traits have on me / my life.
Sorry, I've run off on a tangent a bit here and I'm not sure if I've answered your question or if any of this is at all helpful. It's that time of night!
I'll end by saying that If you do seek a formal diagnosis, it's entirely up to you what (if anything) you do with it. It's a very personal thing and it means different things to different people, each of us are affected to varying degrees and in different ways so only you will experience your Asperger's in exactly your way. All of the books and experts out there can guide you as to what to consider but only you can say if each aspect affects you and whether this is a disability or just an interesting and quirky part of yourself that you wouldn't change for anything. Friends and family too can help us to consider things but no-one gets to tell you which parts of yourself are 'valid' or not, either as traits of you or as traits of Asperger's.
Thanks Endymion.
In fact I went through a massive information overload, but I managed to focus on something else for a little while. The problem now is I am experiencing either grounded self-doubts or denial. I would like to hear your opinion on denial upon discovering your likely symptoms if you like; but mainly I want to let some steam out and account for the recent distressing events I went through.
Here is a brief (?) account of my last few days. My counsellor encouraged me to seek a diagnosis and gave me further advice about social support. A friend and my supervisor also said my insight makes sense, although I am obviously 'very high functioning'. I got referred for a diagnosis and I met a social support group, which was amazing. A lot of things started to make complete sense. But obviously I started doubting their support immediately, reducing my likely symptoms to quirks again. I got in touch with my ex (and only) girlfriend, and she immediately dismissed my idea as nonsense. I then talked to an old friend mentioning my self-diagnosis as something ridiculous, and he agreed, but he also pointed out that I do fit the syndrome somehow (he rejected the pathologising more than the category).
Yet immediately after talking to them, I realised I match the category too well to fully dismiss it as a paranoia of mine. Talking to old friends makes me feel well and might be the proof that I never had problems ('I can be friendly! I can't be on the ASD spectrum!'). It feels particularly good to reject the 'pathology/disability' aspect, which I find illogical and unfair. But it also feels false immediately after I leave them, because I cannot make them see my reasons. In particular, my ex constantly pointed out that I kept assuming she knows stuff only I know (which is something she kept pointing out in the past as well) as a way to argue that I am just misconstruing things. Of course this supports my Asperger's idea more that it refutes it, because lack of theory of mind is one of the main symptoms. Also tonight I realised, again, how sensitive I am to small lights and subtle sounds that keep me awake in the night, and recalled memories about it that I had shut down. Now the pattern seems to make sense again, but the confusion is unbearable.I suppose self-doubt is normal, but it is so painful.