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 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.
It would also be useful to have a sitemap / index of what is on the site - if there is one I haven't found it yet.
It's a good idea to read information from a diverse range of sources re. the various experiences encompassed by people on the spectrum but, as you said, bear in mind that it is indeed a spectrum and no two people will experience all of the same things or in the same way. Some aspects may not affect you at all and this is perfectly fine!
At your assessment it isn't likely that questions will concentrate very much on sensory difficulties (although it definitely is worth mentioning if you have these) it's just useful further reading for yourself in order to find coping strategies.
The assessment will primarily concentrate on the 'Triad of Impairments' which I'm sure you've come across by now and they will be asking about and looking for examples of, for instance, communication difficulties. The assessors will take into account your age and the fact that whilst un-diagnosed all these years you will have likely used many coping strategies and 'masking' techniques to enable yourself to 'pass' in various situations. Don't worry about discussing these, it's best to be as open and honest as possible with them!
For instance, I can and do maintain eye contact with people all of the time and did so throughout my assessment. However, when asked about that, I explained that it was something I made a very deliberate effort and decision to do as a teenager - I practiced it on a daily basis in all of my interactions with people until I was able to do it (almost) without reminding myself. It has become more 'natural' over almost 30 years of practice and apparently looks 'normal' to others but they don't know that I do still (very occasionally) have to remind myself to make eye contact in stressful situations.
Explaining this, and other techniques I'd taught myself over the years, helped the assessors to understand how I'd managed to 'pass' and function for so many years. (It hasn't though helped me to understand fully why I'm finding it more difficult to do so as I get older!)
Good Luck with everything and I hope you are able to get the answers you need.
P.S. beware of information overload, there's a LOT of information out there once you start looking!
I would agree that it would be sensible to search through other posts first if it was easier to search through other posts.
A valid case does not have to be very detailed - remember most gp appointments are only for 10 minutes - just enough that the gp does not feel foolish referring you. You probably need to be aware of and be able to demonstrate the infamous triad of impairments - I prefer differences - communication, interaction and (social) imagination but not much else - it can wait for the next stage of the process.
(It is possible your gp may have some misconceptions about autism so it is useful to know a bit more and if necessary be able to correct any serious misconceptions but this is not strictly part of your case.)
This really clarifies a lot of stuff, thank you. I apologise in advance for being very verbous again, it's a lot of stuff to process (and I'm always verbous anyway).
I was really really confused until an hour ago. I've been collecting a lot of information from this website and other informed talks online, trying to categorise it and relate it to me (positively or negatively). So I was feeling really uncertain whenever I came across claims of very strong impacts of sensations, such as literal (?) distortion of the perceived reality or even synesthesia. The same goes for other phenomena, such as really strong visual memory that persists literally (?) like a film about most of one's life. It took me some reflection and confidence to actually face all my 'weird'* habits and experiences. [*This word just describes how they make me feel about myself: a weirdo.]
But I do relate to most of your examples. I guess their subjective diversity is why it's called a spectrum, rather than a single phenomenon. I completely relate to the crowd feeling. It feels surrounding (regardless of where I stand) and suffocating to me too, usually in a literal sense (I feel out of breath), occasionally indirectly (I fear the feeling and I avoid the cause). When I'm with someone I'm very close to, though, I can sustain the situation and limit negative sensations. Emotional intimacy is an isolating factor to me. Alcohol also helps (or makes things worse).
Background voices always sounded like a terribly annoying, and occasionally scary, rumble which echoes in my head and makes it hard to follow conversations. I had always assumed other people felt it the same way and simply resisted to it better. Peaks of laughter do not feel uncomfortable though; but they do make me worry because I am never sure what people are laughing at and I think I must have missed something.
I've been working at a restaurant for a while. The overload of music, chats, instructions and eyes watching me was really intense for a long time, and I had developed a compulsion about organising stuff on tables to distract myself. I thought I was just annoyed by the low-level job. Only recently it got better, because they have lowered the music (and the watchful manager has changed).
The sound of traffic lights beeping/buzzing, if strong, is almost unbearable to me. As in you comparison, it's like nails on a blackboard. Intense, all-encompassing physical experiences like strong winds and storms, climbing or swimming echo in my whole body and I do re-feel them when I'm going to sleep, so they keep me awake long. Think of it, some storms have given me quasi-hallucinations or small perceptual distortions (I had forgotten!). Also, I have moved to England also to avoid the constant brilliant daylight in my country, which makes me dizzy and nervous. Even here I have not abandoned the custom of closing blinds/curtains to avoid it. I had always explained away this phenomenon as due to my low melanin.
I've always thought most things were just how people perceived the world. I discounted obvious exceptions by attributing them to other causes (e.g.: low melanin) or by considering them quirks (e.g.: so what if I have intense recollections? I've always been imaginative...). It's amazing how much information I had managed to suppress. I got quite good over time at hiding or dismissing all my 'quirks'.Ok I'm definitely more confident in this regard. It was good to have this chat. I totally needed to take this thing off my chest. It's both unsettling and exciting. I'd be glad to keep talking in the future, in case. Maybe less verbously! ^_^
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.
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! ^_^
Hi Taltunes. Thanks, there's two people diagnosed later in life here, and I've found many other cases online. That's so reassuring, it's really like I'm not totally crazy thinking mine are autism-spectrum symptoms. Now I need to prepare a valid case, apparently (everyone and every resource recommends to do this).
Hi Nicky!Thank you so much for your advice. I'll go to a support group for a preliminary chat as soon as possible, and I have started collecting information for my GP (although I must say I find this a bit overwhelming). I'm so grateful I've found this website and so many resources.
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 Alex87
Whilst you wait for more responses from the community - it might help you to search through some older threads for topics that are similar to your original post?
In the meantime, I hope you find that the following information links useful:
You may like to look at our information about autism: http://www.autism.org.uk/about/what-is.aspx
If you were interested in finding out if you are on the autism spectrum, you would need to have a formal diagnostic assessment. You may find it useful to have a look at the following link for further information about diagnosis and the benefits of getting one: http://www.autism.org.uk/about/diagnosis.aspx
Furthermore, it is important the professional you see has experience of autism spectrum. You can find details of diagnostic services on our Autism Services Directory in the Assessment and diagnosis section:http://www.autism.org.uk/directory.aspx
You may like to have a look at the following page which includes personal accounts, which may help:http://www.autism.org.uk/about/adult-life/stories.aspx
It might also be useful to pass on information about autism to health professionals when seeking a diagnosis. The following page includes information for a range of health professionals: http://www.autism.org.uk/Working-with/Health.aspx
If you have further questions, you may like to contact our Autism Helpline team. They can provide you with information and advice about getting a diagnosis. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor.
Hope that helps you, Alex87.
Best wishes,
Nicky-Mod
I don't know how common or uncommon it is not to be diagnosed early in life but there are several people on here who were not diagnosed until middle age or later - I was diagnosed two years ago at the age of 50.
It is certainly possible to go to a GP and ask to be referred to be assessed but one, you will have to convince the GP why you should be referred and two, the provision of autism assessment on the NHS varies from one place to another so it will depend where you live how long you have to wait or even if you can get diagnosed on the NHS.
I don't have time at the moment to read the rest of your post.