ASD diagnosis notes for Dr Joseph, 2016

Deficits in communication and interaction

General I find it extremely difficult talking to new or unfamiliar people, or familiar people that I do not see frequently.

I often find it challenging communicating with familiar people.

I often struggle with understanding my friends and family, and especially communicating complex needs or explaining the motivation behind my actions.

1. Difficulties with conversation (two-way or group):

a. knowing when it is my ‘turn’ to start and especially stop speaking

b. knowing what to say when I am not knowledgable on the topic or interested in it

c. if knowledgeable and/or interested, knowing whether interlocutors are interested in what I have to say

specifically this means: detecting boredom, discerning whether the interlocutor is pressed for time, discerning whether they are able to follow my train of thought. I often assume a familiarity with the subject and race through ideas or concepts too quickly.

d. I often give too much detail (through association, i.e. everything seems equally important to include). This has been described to me as ‘going on detours’

As this is something that has occurred for as long as I can remember being in the social world (since beginning school – before that I was homeschooled and have no siblings), I am self-conscious of it as a possibility. Therefore I can be shy and quiet.

However, with familiar people I tend to experience less anxiety and therefore I tend to behave more or less naturally in conversation. This can lead to confusion, misunderstandings and hurt feelings or damaged relationships.

2. Difficulties with understanding the interlocutor correctly (what my GP described as ‘reading people’)

a. I am intensely aware of eye contact and the expectation to make it.

b. I spend a lot of time in conversation, especially with new people and situations, attempting to assess whether it is okay for me to look away and focus on what I am saying.

c. I do not experience pain with eye contact, but I find myself instantly overwhelmed with ‘data’.

‘Data’ is a flow of new information which I cannot ‘decode’ efficiently enough in the moment. This causes me to lose track of the conversation and my thoughts. I also tend lose track of my body to an extent and especially my facial expressions or movements. i.e. i may start smiling and not be aware that this has happened, which can put the interlocutor off (i.e. ‘wipe that smirk off your face’)

d. I am distracted by attempting to arrange my face and body appropriately, so as to not seem ‘odd’. i was bullied at school for my mannerisms and speech.

e. Acquaintances have in the past commented on an ‘exaggerated’ tone of voice and facial expressions as well as monotone.

f. I often miss do not hear the interlocutor’s words, in favour of sensing a Mood/vibe of the situation. conversely, I can miss the mood/vibe, but remember the content of speech verbatim (and be able to reproduce it accurately later on).

3. Problem with being perceived in a way contrary to my intention, i.e. as romantically interested, ‘forward’, unfriendly, bored or rude

a. I have a range of ‘filters’ that I am able to apply in conversation. these colour my voice and to an extent my facial expressions with an appropriate ‘mood’.

b. Often, especially when comfortable or tired I do not slot in as many filters as may be expected, or use the ‘wrong’ filters. this means my reactions in the conversation may seem contrary to the interlocutor’s expectations and cause confusion or even anger. i.e. my mother has described me as ‘robotic’ and devoid of feeling.

4. Problems with understanding jokes (on cue) and ‘being funny’. There was an episode at boarding school when I was suspended for spilling bleach on the floor of a science lab because I was trying to make my classmates laugh. Equally, in sixth form I have been accused of being deliberately disruptive, when really I was attempting to be accepted, be liked and make my classmates laugh. In effect however I believe my behaviour deteriorated during this period (16-20). See letter from Westminster School re de facto suspension. See report of outburst with therapist.

5. I observe and mimic the humour, mannerisms and lexicon of people (or TV characters, comedians) around me that I consider to be socially successful and funny, in order to avoid being perceived as ’strange’, and scrutinized. This happens consciously but also automatically (which can cause embarrassment and rejection).

6. I have a tendency to miss sexual cues. I have been sexually assaulted when I was at school (I assumed the interaction was ‘friendly’ when it was not). I continued to be particularly vulnerable to predators throughout adolescence. Very recently (December 2015), I was a victim of stalking and harassment by someone I believed to be my friend. The University are aware of this and the perpetrator has been formally cautioned.

repetitive activities, behaviour, interests

1. I struggle with taking on unfamiliar activities, spending time in unfamiliar places, and switching between activities and tasks.

a. I struggle with (sometimes) starting and (especially) stopping familiar activities.

b. I sometimes get ‘fixated’ on tasks, i.e. find it very difficult to stop doing something I am very involved in (even if it is not strictly speaking my interest). This means I tend to focus excessively on a part of a task, rather than on completing the task itself. This causes huge problems with deadlines. This means I struggle with every aspect of my life, especially my academic career, responding to emails, applying for jobs and doing any kind of job where time management is of key importance. When working as a private academic tutor or translator (this has been my only paid occupation), I have spent many more hours preparing or editing than my peers in similar occupations, based on their reports. This means I have less time and energy for other tasks, and therefore avoid them.

c. I perform daily tasks according to the same, fixed mental routines. This enables me to actually complete some of them, i.e. personal hygiene. I have had issues with showers and brushing teeth continuously throughout my life, and I have now developed fixed patterns for executing these tasks in order to minimise the stress and time-expenditure they caused in the past. Taking off my clothes completely is something I find very difficult due to a sensitivity to temperature change. I often sleep in the same clothes that I wore during the day, and change my clothes in phases. If living in an unfamiliar place, my routines will require a degree of modification, and this means my academic and social commitments cannot be prioritised appropriately.

d. I can be somewhat rigid in cohabitation. I often struggle to understand why people do not put things back in their place or perform chores to a minimal standard of consistency. I experience stress when I notice certain trivial changes (even if these have no impact on my activity plans).

e. when I am not fatigued, I enjoy organising and reorganising the space around me. I can get somewhat fixated on that activity however.

NB when fatigued (which is often), i allow clutter to build up. I find it difficult to concentrate on my thoughts when surrounded by clutter. Equally, I find it difficult to work in a ‘sterile’ room or environment, especially if the surfaces of the furniture are light, very smooth and/or reflective. I am easily distracted, and find it difficult to return to task if anything interrupts me. This sometimes leads me to become very distressed, but mostly I unintentionally dissassociate my knowledge that I should care (i.e. about deadline) from my immediate emotions.

f. when playing with other children (preschool > middle school), I invented games and insisted on the rules and premises being honoured. this occasionally caused tension, and as a preschooler I already experienced ‘break ups’ with friends. I wrote a poem to a preschool friend who stopped showing up to play with me.

g. i find it anxiety-inducing to do even ’simple’ familiar things in new ways (i.e. switching to powdered detergent instead of liquid when doing laundry. My partner insisted on the switch, and in effect this meant I began to avoid doing laundry all together). The difficulty for me is about a different set of motor skills involved in the use of powdered detergent (i.e. the balancing of the box, the effort it takes not to spill it, the intensity of the smell and the sensation of the detergent on my skin).

2. Behaviour, general. This is likely to be a short list as I am finding this difficult to visualise, and second-hand observation is necessarily required here. I therefore hope my partner’s testimony will prove more useful here.

a. I really love spinning, swings with a big amplitude, being in a car that is driving very fast, or being on a boat during a storm. I find it incredibly calming and I do not seem to develop nausea as quickly or intensely as others.

b. I repeat certain movements when stressed, to calm down or simply to increase concentration. I pace, shake my head, touch my shoulder (rolling my fingers over the blades over and over again).

c. If comfortable with someone, I can repeat the same words or gestures or jokes with them over and over again. I.e. When watching a video with someone, I can forget to ‘switch around’ my responses/remarks so that they appear truly spontaneous, resulting in me making the exact same comments in response to exact same cues in the video.

d. As a child – strong attachment to parts of toys, i.e. playing with the washing tag rather than the bunny. I do not remember lining my own toys up, but I lined up other people’s possessions.

e. I enjoy watching certain things move. I love watching cars pass. I can spend a long time staring out of the window of a moving car and attending to the relative motion between cars on a highway, now shrinking, now growing. I enjoy conversations about the technical properties of cars if these help me understand the particularity of their movement. I enjoy watching marine animals swim.

3. I have always had very strong interests, which I am compelled to honour. These bring me great joy and purpose, but there is a strong sense in which this drive has also proven to be obstructive. I tend to get very absorbed in things I am interested in, but this does not necessarily mean I will be able to work to deadline (although on occasion I produce work of a very high standard at rapid pace).

a. my family have often commented that if I develop an interest in something I tend to ‘learn everything about it’. This has been the case for as long as I can remember, i.e. as a preschooler I had a very strong interest in dogs which lasted for years, and was able to recite information about all the breeds and subtypes in the books which I had. I intensely wanted to work with dogs, but was forced to abandon this due to pet allergies. I enjoyed teaching sympathetic adults about dogs, and devised lesson plans for my mother’s friend.

b. intense interests alienated me at school as they did not match up with the interests, hobbies and fashions of my peers.

c. academically, difficulty with restricted/circumscribed interests meant that I received grades at both extremes, as some assignments I was able to excel on, leaving me no time to even begin some of the others.

d. my interests are part of my daily routine, and being unable to honour them throws off my routine completely. My sense of time’s passage (this is something my mother has said has been the case since childhood) appears to be impaired, and this is magnified when I am involved in pursuing an interest. I get ‘lost’ in the few activities that capture my attention, and do not require breaks. This means I miss meal times, go to bed many hours later than partner of family, and/or I forget to get up to urinate until I am in a significant amount of pain. Intense interests interfere with my other plans or duties. I have very limited energy and as mentioned before struggle with fatigue, and I tend to invest so much time in my interests that I am completely unable to switch to deadline-related work.

Additional material

1. planning and organisation – experience overwhelming difficulties.

a. through my BA degree, I handed most pieces of work in late, and/or incomplete. With certain modules I did not have time to revise/complete coursework at all, despite working very hard generally. This caused my mental health to deteriorate (I became anxious and depressed, my self-esteem suffered, I further withdrew socially).

b. my grades and feedback oscillated between poor to outstanding. I received very few ‘average’ grades.

c. struggle knowing when/if/how to ask for help. Even if I should ask for help, I still delay doing so. I am unsure why this happens.

d. can only use electronic software (not paper lists) to keep track of what I do. I forget to check notepads, I cannot read my own handwriting, I get overly attached to one notepad and when it runs out cannot incorporate a new one into my routine, meaning I lose it instantly.

e. throughout my degree I have had almost every single piece of work formally extended. Disability Services recommended me for flexible deadlines and a separate examination room (shared with no more than 5 people, if not entirely on my own). This accommodation made an enormous difference, I believe this enabled me to graduate and attain my degree. I have dropped out of a BA before due to an inability to cope with deadlines and ask for help. I still struggle asking for formal help or accommodation, and struggle with composing emails that inform my University of my difficulties. I often am not aware that I am struggling, and when I am aware, I do not know how to go about communicating this.

2. Struggle with /a special relationship to change

a. I regularly miss bus connections and trains if the planned route changes even slightly.

b. I easily lose things that are ‘misplaced’ out of familiar context, even if they are in the same room. I misplace my own things regularly, i.e. when I do not have the energy to take all the necessary steps to deconstruct clutter.

c. I get lost if my walking route is altered / if the environment has been modified slightly (i.e. different shop fronts can disorient me totally)

d. I wear the same clothes over and over. I was not aware of this until peers at school began to comment negatively.

e. my mental health and functioning deteriorate when sudden change to my routine is introduced. I suffered an intense and sudden relapse in binge/purging behaviour in December 2013, after moving back to Russia for a few weeks over the holidays, and forced to adjust my schedule to that of my parents (i.e. lunch is their ‘sit down’ meal, my usual ‘sit down’ meal is dinner). My relationship with my parents was fine at this point.

f. I am able to build new routines to adapt to change, but I struggle with externally imposed schedules and routines. I am often told I am uncooperative, uncommunicative, avoidant and stubborn.

g. I don’t recognise people ‘out of context’ unless I make a specific effort to remember them.

3. Meltdowns and self-injury:

a. when faced with strong emotions or frustration (usually over something fairly trivial), or failure with communication.

b. i experience a powerful drive to hit or bang my head.

c. head banging is one of my earliest memories (c. 5-6 years old).

d. i experience a massive release and soon after a meltdown my functioning is partially restored / ‘reset’.

e. however they are often followed by headaches or migraines.

4. Ongoing anxiety and bouts of depression. Can have ‘extreme’ moods, very intense and overwhelming feelings, but otherwise (normally) emotionally ‘numb’, with very limited insight into naming ‘middle of the road’ emotions.

5. Insomnia/issues with sleep (since childhood):

a. I would struggle with going to sleep if allowed to read for an hour before bed, and would be disciplined as I attempted to read with the light on. I was obsessive with my books and took them to bed as well as to mealtimes and beyond.

b. I go through period of sleeping only 4-5 hours a night. When this happens, I feel extremely unwell.

6. Motor skills and proprioception problems:

a. I have a series of early memories involved with being disciplined for breaking and dropping things too often. My mother referred to me as ‘pathological’ and ‘abnormal’ during those disciplinary episodes.

b. I frequently drop things or walk into objects or walls.

c. I often cannot feel my body, especially my limbs. I press my body into sharp corners to ‘retrieve’ the sense of my boundaries.

d. I have poor handwriting. I write very slowly, and therefore almost exclusively use the keyboard for notetaking and communication.

e. I had poor balance as a child, but I practiced certain sports (skiiing, fencing) to improve.

f. I have been described as sitting in ‘twisted’ positions and having ‘bad’ and ‘odd’ posture. I attribute sitting in odd positions to a ten.

g. As a child, I regularly injured myself through clumsiness.

7. Some difficulty grasping verbal instructions:

a. Comprehending/remembering verbal directions, understanding how to do new tasks and chores after a verbal explanation).

a. I was disciplined and punished frequently during childhood into adolescence for failing to do chores appropriately, i.e. would jumble simple steps of an instruction set (i.e. when washing the floor) or skip steps entirely.

8. Struggle with information overload & sound:

a. Cannot ‘filter out’ or ‘tune down’ voices and noises to a degree that allows me to follow conversation/a lecture/a film. constantly asking other people to be quiet). Prefer subtitles but tend to only use these in private because of worries about social perception.

b. Struggle to understand song lyrics

c. Information overload can cause crying, confusion, screaming, loss of speech and self-injury

9. My sense of time appears impaired


1. Restricted interests:

a. I played board games (Monopoly) and table top games against myself.

b. I enjoyed learning facts from books about subjects such as animal food chains, Greek mythology, Tibet.

c. I devised intricate imaginary worlds, many of them, with detailed rules and environments, populated by imaginary species, all of which enjoyed their own properties and characteristics.

d. I perceived the world as intensely animated. I spoke to trees in (non-verbal) ‘tree’ language by humming and touching their bark. I imitated dogs’ barking (I can still imitate dogs and some birds very persuasively).

e. Overwhelming interest in dogs.

f. I collected animal figurines of a particular brand avidly and did not have interest in other types of animal figurines or small toys. Every Saturday my father would bring me a small figurine and I became very distressed if this did not happen.

g. When gifted Barbie dolls, I spent more time organizing and categorizing their clothes and items than making up stories. I do not remember a single pretend story line concerning the Barbies, although I was imaginative in other senses cf (c).

2. Play:

a. I was capable of ‘pretend play’ if I invented the game and the rules.

b. My childhood friend’s mother still recites anecdotes of my controlling nature with respect to her son.

c. When I was 6 I was introduced to a (different) family friend (then aged 10). She showed me her things, including a big shelf of nail polish bottles. Without any prompting, I lined up her many nail polish bottles and organized them according to colour. It was fun.

Primary school

1. General:

a. I was homeschooled until I was 7. I started school in September 1998, and turned 8 that December.

b. I was hyperactive and fidgety, and also constantly felt exhausted.

c. I was ‘out of touch’ with my feelings and needs. I struggled to go to know when I was sleepy or hungry. My mother had to put a lot of effort daily into putting me to bed and ensuring I am not reading instead of sleeping.

d. My mother recalls a doctor remarking that I presented as untypically ‘stoic’ (i.e. never complained or asked for accommodations) during very frequent and severe bouts of flu/bronchitis as a child.

2. Friends/play/restricted interests:

a. (This continues into secondary school) played video games for hours. I socialised with neighbourhood boys on that basis. I did not socialise with girls as we had less things in common.

b. I was initially excluded from games by other children.

c. I was accepted by the boys after bringing in my collection of Pokemon cards and demonstrating my knowledge and interest.

Secondary school (general)

1. I moved to the UK in 2002 and enrolled at a single sex boarding school

2. The pastoral staff had to introduce me to the concept of other people’s ‘personal space’ and explain repeatedly that sitting ‘too close’ to people is a problem.

3. I have been repeatedly described as ‘staring’ at other kids.

4. I was bullied in year 7-9 and excluded

5. I developed friendships with one person at a time, usually someone considered ‘weird’ but not an outcast. These friendships were intense but only lasted a few months at most.

6. I took up long distance running to avoid competition and humiliation in PE.

7. I stabbed my wrist with a knife (once) during a meltdown in 2005 after another episode of rejection.

8. I am a survivor of a non-consensual sex episode in sixth form, perpetrated by someone I thought of as a ‘friend’.

#ASD #autism #autismdiagnosis #neuroticturn

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