This is a verbatim reproduction of the information I compiled before visiting my GP (General Practitioner) to request a referral for assessment for autism.
Please note: this documentation is far from perfect. These were my reflections at the time, composed from a perspective of limited knowledge about autism. In some places, my opinions or thoughts have changed based on further reflection – there’s a lot I’ve realised about myself that isn’t covered here, or that isn’t correctly conveyed (for example, eye contact – I now realise I’ve never actually done it in the way others appear to). But this information was detailed enough to get me that referral and, for the most part, is an entirely accurate representation of me in April 2016, three months prior to diagnosis, and ‘masking’, because it was all I knew.
It’s also highly focused on deficits because, well, that’s how the medical model of disability works, and unfortunately, that’s pretty much what we’re stuck with right now. So my advice is, work with it. But recognise that you will also have innate strengths.
I’m presenting it here as an example of the sort of evidence that might be relevant for someone getting assessed – especially if, like me, your outward manifestation of autism is somewhat ‘atypical’ (although I firmly believe that my autism is only atypical because there are so many autistic people like me out there who aren’t diagnosed).
Please bear in mind, however, that I am not a medical professional.
Here it is.
A – Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history
A1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
One of my biggest problems with interaction has always been my tendency to launch into monologues – when taking part in a conversation, I feel the need to say as much as possible about the topic being discussed, bringing in as many points as possible, however peripherally relevant. I get extremely anxious if I am interrupted and do not get the opportunity to finish off what I started saying, or when the conversation has moved on before I have finished making my point. I have learnt to try and ‘let this go’, but still have difficulty not interrupting others who are speaking after me to finish off my own contribution. I therefore much prefer online ‘discussions’ e.g. via social media, as I have time to formulate my response, provide as much detail as I like, and edit my posts/comments after they have been posted, as well as having time also to formulate any responses to others’ contributions. My husband and family are mystified by how much time I can willingly spend on social media, but the truth is, much of my engagement with social media comprises involvement in in-depth discussion threads, which I see as meaningful. This also feeds into work, where I prefer receiving and giving instructions in written form.
I detest small talk, and although I have learnt to make it, I would happily forego it altogether if this were possible – I love getting into in-depth conversations about topics of interest. I often find myself trying to avoid catching someone’s eye (even if I know them well) if I encounter them somewhere unexpectedly (in the street, in a shop, over the garden fence etc), so I can avoid making small talk. I am much happier encountering friends, family and acquaintances in pre-planned situations.
I rarely initiate conversation other than to ask someone for help/input into something. However, I will quite readily jump into conversations that have already started, sometimes a little too abruptly (I’ll overhear a conversation, and join in by simply asking “what’s this?”, which doesn’t always feel like quite the right way of doing so).
There are times, especially during unexpected interactions, when awkward silences arise during conversations. At these times, I simply don’t know where to look. I will often try and fill the gap by continuing talking, over-elaborating on a point already made, but at times stumbling because at this point I’m so nervous.
I have a social smile, but this is not instinctive; it is, almost always, a conscious response. This doesn’t mean I’m not pleased to see people, but my ability to make facial expressions is mostly intellectualised. At times, this means I can be exaggerated in my facial expressions, as a deliberate ploy to demonstrate my understanding of the situation/topic of conversation etc.
I understand myself to be someone who feels empathy towards others – to an extreme extent in some ways. I feel the injustice done towards others very acutely and painfully. I understand that others are experiencing pain, upset, or whatever, to the point, at times, of preoccupation, leading to difficulty sleeping, concentrating on other things etc, because I am dwelling so much on someone else’ problems and imagining what it would be like to be in this situation. However, my ability to offer comfort others feels learned – my desire to offer comfort, support, and help is entirely sincere, but I feel as though my responses are ones taken from an instruction manual that I have built up myself over my lifetime.
I am okay with physical contact and affection from those close to me, e.g. family members, husband, children. I have learned to accept hugging as so many people (i.e. friends) that I genuinely care for seem to find this an acceptable and common thing to do, and unlike very light touch (mentioned below), I don’t find the sensory aspects of giving or receiving a hug problematic, but if I could get away with not having to hug people other than close family this would be infinitely preferable! Conversely, I have also found myself being over familiar with certain people (i.e. kissing people who aren’t comfortable with it) having not been sure what the conventions are in a given situation, and over-compensating (this often happens in situations like work networking events). The embarrassment I have felt when I recognise I have been over-familiar can last for hours after the event.
I have real difficulty receiving praise. I can never tell whether someone is being sincere or not, and even if I think the praise is justified (when I know, for example, I’ve done a good job or something), I find it very difficult to truly believe that the other person thinks this. My thanks (or other response) to someone giving me praise probably therefore appears stilted and awkward.
A2. Deficits in nonverbal communicative behaviours used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
I have learnt to make eye contact, but I do not like having to do so. At times, I feel that my eye contact is rather too extreme and ‘staring’, as I am over-compensating for how unnatural it feels. Perversely, I’ve been doing it so long, having learnt since an early age that this is “what people do”, that there are certain times when I don’t even know what it would be like not to make eye contact. I find it helps if I have something else, e.g. a piece of work, a drink, or one of my children(!), that I can legitimately look at now and again without it looking rude that I’m not continually looking at someone’s face.
After asking someone a question, I will often find myself turning away from them whilst they are making their response, especially at work (e.g. I’ll turn back to my computer screen even whilst listening to them).
I am aware that at times I am unable to control the volume and pitch of my own voice, and it is sometimes too loud or too high pitched, especially when I’m anxious or nervous.
I have great difficulty “reading” other people’s reactions in conversations, especially when I am talking for too long. At times, I get the sense (primarily learnt, based on what I have learnt to be the approximate natural duration of exchanges during conversation), that I may have been talking for too long, but I still feel the need to finish what I am saying.
A3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behaviour to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
At primary school I used to be quite happy to ‘tell on’ people if they did something wrong – I had it explained to me that this wasn’t always the socially acceptable thing to do, but my feeling was that the person had done wrong, that this was unfair, and that therefore someone (i.e. an adult) should do something about it.
I have always had a lack of embarrassment in certain contexts: e.g. having a conversation whist on a school trip about being a member of the Girl Guides, being told by the other person that this wasn’t cool, and replying that Person X (someone perceived as ‘cool’ in the school) also attended Guides – Person X would not have admitted to anyone outside of the Guide Company that she attended, but it didn’t occur to me that she would want to keep such a thing a secret. I wasn’t ‘telling on her’ out of any sense of malice. Being on holiday with a group of friends after GCSEs, in a self-catered flat, and totting up our food bill out loud as we made our way round a supermarket. My friends moaned at me because I was embarrassing them, but it did not remotely occur to me that such behaviour would be a cause for embarrassment (I still tot prices up out loud today). I used to wear my Guides sweatshirt even when not at Guides. Apparently this was sneered at by everyone, as was the fact that I wore white socks (another thing that “wasn’t cool”), as friends of mine told me years after the fact; but I never noticed at the time.
As a child, I rarely ever initiated play – friends rarely came to my house; I always came to theirs, and was always invited rather than being the one doing the inviting. I would never have thought to initiate a play date. Most of my ‘close’ friends in primary school were from the year below me; although academically brighter than many of the children in my own year, I felt slightly ‘removed’ from them, but was never entirely sure why. I continued to play with some of these friends even after beginning secondary school. I still struggle to initiate social occasions even now, although as an adult I have plenty of friends.
My play as a child was often solitary. I remember going to our local youth club every week and spending the entire session on my own at the art table drawing, or having long conversations with one of the adult helpers about the musical Cats, which I was obsessed with during my final two years of primary school. As a child, I used to resent being forced into playing games that involved interaction, such as team sports, chase/tag, etc. Long walks, paddling in streams, bike rides, blackberry picking etc were far preferable, and I really enjoyed doing these things alongside other people. When football club was made open to girls in our final year of primary school, every single girl signed up except me. I joined the technology club instead, which took place at the same time – virtually all the other members were a couple of years younger than I was. Throughout my secondary years I much preferred ‘organised’ social activities, such as being involved in amateur theatre, or playing an instrument in an orchestra or band – I loved, and still do love, the communality and camaraderie of playing music with others, because the social interaction itself isn’t the main focus.
Specify current severity: Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.
I had great difficulty all through childhood forming and maintaining friendships. Today, social interaction makes me anxious, and I am frequently embarrassed by faux pas during conversation.
B – restricted, repetitive patterns of behaviour, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
B1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
I have always tended towards pedantic language. I was teased because of it when I was younger, especially at secondary school. I find it very difficult to be concise, either in writing or when speaking.
Whenever I am not standing up or walking, I feel the compulsion to move one or both of my feet. I remember feeling like this a child as well. If sitting down I will often tap a foot or circle my ankles; if sitting on a high stool I feel the need to swing my legs; when in bed I need to rub one foot back and forth against the sheets. I have also, for literally as long as I remember, drummed and scraped my teeth in tight rhythms to create ‘drumkit’ sounds; either to whatever song happens to be in my head at the time, or to my own made-up tune.
I am also a compulsive skin-picker, and have calluses on my fingertips from playing with split ends in my hair – I remember first doing this at 11 years old. I recently bought some ‘Tangle’ fiddle toys to try and get myself away from doing damage to myself because I feel so compelled to be doing something with my hands at all times.
I repeat myself often when in conversation, frequently hearing from other people the words “yes, you’ve told me this before”. I know I have told them before, but I find it personally reassuring and comforting to repeat a story even though I do get the sense this doesn’t quite work in all conversations. I often ‘rehearse’ conversations in advance, but then find myself saying out loud, repeatedly, certain phrases from my imaginary ‘rehearsed’ conversations.
I also find myself sometimes repeating something back to someone rather than responding to them (recently, I returned to work from maternity leave. One of my colleagues said “welcome back” and I immediately repeated this back to her, then had to correct myself and respond correctly).
B2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behaviour (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
I am not especially attached to routines or rituals, although there certain routines I will always stick to, no matter what the circumstances – when I was younger, I would always go through my entire skincare/makeup removal routine, no matter how drunk after a night out, or tired, I was. Nowadays, I get anxious if I’m not able to complete the full dental hygiene routine of tooth brushing, flossing and mouthwash, despite having an incredibly busy family life. I am also overly upset by being late for anything (something I’ve reluctantly had to ‘let go of’ because of having small children), and always need to have a way of checking what time it is.
I am not excessively resistant to change, providing I have had adequate time to prepare. However, unexpected alterations to plans (for example, cancellation of a fitness class at the gym) really upset me.
I think very rigidly at times. I really struggle with non-literal language e.g. sarcasm, satire or implied meaning. These days I can usually detect it, but I tend not to find it funny, and get extremely comfortable if the ‘joke’ goes on too long. I have in the past been accused of having “no sense of humour”.
B3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).
One of my most significant obsessive interests as a child was with the musical Cats, which I went to London to see for a birthday treat during primary school. That began a couple of years of endlessly drawing the logo, listening to the soundtrack, repeating one particular line, sung by one particular actress, from one of the songs, mimicking her voice (I think I thought it entertained people, but in retrospect I think it more likely that they asked me to do it in order to poke fun at me), and talking about the musical to everyone. I did also have a slight obsession with cats (the animals) in general prior to, and for a few years after, seeing the musical, and was always drawing pictures of them. I’ve never had any real interest in musical theatre since that one fixation.
I have, throughout my entire life, been obsessed with people – observing their actions, analysing features, categorising them in my mind, etc. From preschool age I began to draw people – never in any particular setting, but often standing around talking in groups – I continued doing this until towards the end of adolescence. These days I tend to be preoccupied by aspects of people, rather than the person as a whole – when watching TV news, I am often more interested in trying to work out the source(s) of someone’s accent, or the etymological origin of their name, than on the content of the interview or report being talked about.
I have since adolescence had a preoccupation with philosophical concepts relating to what it means to be ‘human’ – the Descartes proposition “I think, therefore I am”, the definition of a cyborg, and the extent to which a person can be modified and still remain ‘themselves’. Whenever I watch a film/TV programme or read a book that features these ideas (Cold Lazarus; both versions of RoboCop; Ghost in the Shell; I, Robot; Ex Machina; Iain M Banks SF novels) this usually ushers in at least a week of reading up on the topic, thinking, and trouble sleeping because I am mulling over all the related questions and issues. I don’t worry about this issue; I am simply so preoccupied by it that I can’t shut my brain off easily.
I am exceedingly perfectionist when it comes to written work. I am obsessed by correct punctuation and grammar, and on choosing the exact word or phrase most suited to the purpose. I feel easily offended by grammatical, punctuation or spelling errors. I have learnt, over time, to ‘let it go’ and produce work that is merely ‘good enough’ if there is a pressing deadline, but I nevertheless find this very difficult.
B4. Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
I have some sensitivities to touch: bra fastenings feel extremely uncomfortable (there has never been skin irritation so I do not believe there to be an allergy involved); I have to cut labels out of clothing; soft, light touch makes me want to scream (one of my daughter’s sensory-seeking behaviours is to lightly stroke bare skin, such as my arms – at times I find myself getting angry with her, flinching and wanting to bat her hands away). Certain garments such as tights and leggings make my skin crawl when I’m out walking in either very hot or very cold weather.
Certain sudden noises – emergency sirens, pots and pans crashing, loud bangs – feel physically violent to me, and almost like a personal assault. I seem to be far more irritated by high-pitched whistling from electrical equipment than anyone I know. More generally, I find a lot of noise very distracting. At times, if my office is noisy, I find myself staring at my computer unable to do anything because I’m so overwhelmed. White noise, such as ambient coffee shop hubbub or rainfall, helps me concentrate, and I love listening to music (but not when working as it distracts me).
I have a really strong aversion to the smell of most perfumes. They make me feel physically sick.
Specify current severity: Inflexibility of behaviour, difficulty coping with change, or other restricted/repetitive behaviours appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.
Colleagues have complained to my manager about my disruptive behaviour. I have lost friends because the reactions I have had to any sources of distress or upset have been so embarrassing to them.
C – Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
I strongly feel that many of these difficulties have been present with me throughout my entire life. However, I have learnt to mask most of these. On occasion, however, I find certain behaviours are manifesting themselves more now than in previous years, possibly because of the demanding nature of my life right now.
D – Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
I was diagnosed with depression during university, and anxiety later on, but I strongly believe that I had these problems from late primary age onwards, and that the root cause of much of my mental illness has been difficulty with friendships and social interaction. Meltdowns at school (usually manifesting as uncontrollable crying or, in extreme circumstances screaming), mainly through extreme reactions to unpleasant situations, led to teasing, and peers learning that I was “easy to wind up” and thus doing so often. I had numerous fallouts with friends because of meltdowns, and have always felt that I didn’t ‘fit in’. Nowadays, I have a wonderful and close circle of friends, who are tolerant of difference, and many of whom are themselves a little ‘quirky’ or ‘alternative’. However, new social interactions are still difficult.
Meltdowns have caused serious problems at work. I was dismissed from a temping job shortly after leaving university because of inappropriate behaviour, and have had verbal warnings in other jobs since for being disruptive, inappropriate, or noisy. I am lucky in my current job that my boss decided to deal with complaints from my colleagues about my outbursts in the office and anger management issues as an occupational health rather than a disciplinary problem, which empowered me to seek help through IAPT and other services. I have since learnt many strategies, such as mindfulness, stress control etc, which help me minimise the worst excesses of my behaviour. But I still don’t feel like I have the full story. There are many times when I feel so overloaded – when there is too much noise, when I have a lot of work to do, when people are talking over each other during a meeting – that I want to scream. Usually I am able to contain myself during the working day, but this has meant being very angry and short-tempered on arriving at home, and needing to relieve the tension by hitting my own head, punch my fist into a wall, banging my hands on work surfaces, or simply yelling. I am further having to curb this behaviour because of having young children at home. Physical exercise helps, but because of joint problems I am very injury-prone and often unable to exercise as I want to, and currently I lack free time because of adjusting to full-time work and a young family, which further limits my ability to use exercise as an outlet.
I have never slept well. A lot of this is down to anxiety and depression, but also my preoccupations. There have been times when I’ve had to call in sick because I have had only a couple of hours sleep due, simply, to thinking (although I would never admit this openly as the reason), and am thus in no fit state to perform well in my job.
I often need help with prioritising my work, and often in fear that I may be disturbing others or disrupting their work. I have always been academically able, and am now in a job that I really enjoy, where I am able to do well, be reasonable autonomous, and where I am supported by very tolerant colleagues and management. But I find, at times, the struggles not to be completely overwhelmed and overloaded, and maintaining a façade of easy social interaction, emotionally and mentally exhausting. I lack confidence, and always feel that I am less able than my colleagues and peers to reach my potential.
E – These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
This is not for me to decide.
[Author’s comment: to this day, it annoys the hell out of me that I didn’t write anything in this section. I knew full well I had no intellectual disability or global developmental delay.
I think I just got tired and thought I’d written enough. Which was kind of true.]