AutismTalks

Main info

Reading

12Jan24

• Autism and Everyday Executive Function
• Exploring Depression and Beating the Blues
• Attwood: CBT for Children and Adolescents with High Functioning Autism Spectrum Disorders - maybe a bit clinical?

13Jan24

• "Different, not less" - Chloe Hayden embracing your true self - might be worth considering for Isabel?

Burnout

• New, by Viv Dawes
  • Understanding Autistic Burnout Workbook - with support sheets - for adults experiencing burnout
  • Supporting Children and Young People Through Autistic Burnout
• Self-Regulating - a supporting guide to autistic burnout - small so could be good initial read
• Autistic burnout recovery for beginners

Self-identify

• Devon Price, Unmasking Autism: The Power of Embracing Our Hidden Neurodiversity
• Hannah Belcher, Talking off the Mask
• Felicity Sedgewick, Laura Null, Helen Ellis, Autism and Masking

Depression

• Book: Exploring Depression and Beating The Blues

Top notes

Women mask a lot and it's exhausting, also can lead to burnout, which then whacks executive function

Compounded by:

• Alexithymia - inability to access/describe ones internal emotional state - hits regulation too
• More general autonomic system dysregulation means that anxiety is stronger even before you account for the social stresses

Empathy: not lacking empathy - but

• affecting/compassionate strong
• cognitive/behavoural weak

Social PTSD:

• is very much a thing, particularly with females
• can compound up over a number of incidents, e.g. doesn't have to be a single event
• EMDR can help with social PTSD, works well with autists and dysregulation in nervous system

Depression - sudden, brief attacks - can have suicidal ideation - definitely a thing!

12Jan24: Succeeding With Autistic Teenagers

https://livestream.com/accounts/4972777/events/11017614/player?width=640&height=360&enableInfoAndActivity=true&defaultDrawer=&autoPlay=true&mute=false

General Setting

Overall outlook

• 1/3 each of
  • serious issues that take years to recover
  • mental health issues with in-teen recovery
  • relatively few difficulties
• But puberty can reconfigure social skills etc to the extent that maybe 10% post-adolescence are not sufficiently inside the autistic cluster to be diagnosable anymore
  • Maybe that covers me :) I definitely have some autistic traits but am some way outside the cluster of formal diagnosis nowadays - perhaps when I was 20 it was a different story?

Why austistic teenagers have so many strikes against them

• Autistic teenagers tend to have high cortisol levels in the evening - indicative of a build-up of stress over the day - this impairs sleep. Compounded by a failure of wider regulation.
• Autism is associated with an Autonomic Nervous System (ANS) is out of equilibrium because of over-activated Sympathetic (SNS), under-activated Parasympathetic (PNS)
• Couple that with puberty hormones that increase depression, anxiety and risk-taking behaviours.
• Amygdala (mid-brain emotional processing) structurally & functionally different in autism, over-response to threat/negative situations, also less effective pathways to pre-frontal cortex
• Puberty rewiring takes longer in prefrontal cortex, limbic system, visuoperceptual - can run even into the 20s
• Then there is also the transition and change that comes with puberty - these are often the biggest stressors for autistic people in any case
• "Two-Hit Model": disruption in neural development in the womb, but then also at teenage time there are hormones + rewiring problems + increasing complexity of demands

So they have to work so much harder than NT teenagers: respond with compassion! Offer validation and support. Adjust expectations - and allow times for rest, recuperation and fun.

Camouflaging

• Autists can end often acquiring social inclusion by masking/mimicing - observe, analyse and imitate successful social patterns. "Fake it till you make it".
• This is exhausting! Looks "cured" but it's surface sociability - ultimately can be very maladaptive - you haven't resolved anything
• In teens, can end up with school-vs-home characters - Jekyll and Hyde
• Eventually the wheels come off and a problem surfaces through which autism is eventually diagnosed
  • The list is long: anxiety, depression+self-harm, BPD has BIG crossover, Anorexia, mutism, gaming addiction, gender dysphroia, ....

Focus on the positives

• Honest, determined, expert, perfectionist
• Kind, speak your mind, reliable friend
• Liked by older adults

But there are difficulties too...

• Making friends, being teased
• Managing feelings, knowing what someone is thinking, showing the affection others expect

Autism isn't "bad"

• It's a different form of perception, thinking, learning and relating.
• Need to explain this to others!
• Many many famous autists in all fields of arts and science: Anthony Hopkins, Jung/Skinner, VanGogh, Einstein, etc

Importance of understanding stress and CBT type ways of dealing with it

Psychological reaction to being different in teenage years

• Depression 71% - low self-esteem, isolation, recluse
• Imagination 64% - fantasy world, role play games
• Denial and Rigidity 50% - inflated self-esteem, narc
• Imitation 70%

School

Learning profiles for autistic adolescents

• different styles
  • 50% visualisers (more than I might have thought!) - "engineers"/"artists"
  • 20% verbalizers - textbooks - very very good with words - good with complex prose - "authors" - hyperlexia - can self-teach to read
    • that's me, that is
• processing time can be an issue - "emulation" for social/emotional - but can get auditory/written processing issues (don't think that's an issue for Isabel)
  • silence can be helpful
  • don't interrupt processing - they hate being interrupted, although they often interrupt themselves!
• good at pattern spotting
• distraction by peers talking can be tricky (auditory processing)
• group activities can be challenging: different perspectives, teamwork skills
• fear of making mistakes

Executive Function

• Planning, organising, getting started, knowing how long it takes, distraction, losing things, multi-tasking
• Attention regulation is tricky
• A secretary can be useful - marry them or pay them!
• Psychological behavoural/cognitive methods don't help. You need techniques - structure/systems.
• ADHD and autism is a difficult mix - medication can help

Social

• socialising is hard work! Need a safe place
• even one friend makes thing easier

Exhaustion and burnout is a real risk. Prevention is better than cure!

• Prune the curriculum - choose your battles
• Homework management - maybe we just don't do it?

Sport

• Solitary practice?
• Golf, swimming, cycling - athletics - martial arts - dancing
• Autistic girls may enjoy team sport

Emotional

over sensitive to Exteroception - outside world - sound/sight/touch/smell/taste and emotions in other people

• Me too!

insensitive to Interoception - inside world - pain/heart/breathing/hunger/temperature and emotions in oneself

• Mind-body practices can be great - Yoga, Meditation, Headspace
• Measurable effects on 8 brain regions - all associated with autism

Alexithymia - The inability to recognize or describe one's own emotions

• It's not good! It's a potential precursor of mental conditions
• Present in 80% of autistic population
• A very strong risk marker for addiction
• Can use music or art to express
  • Poety, lyrics, novel writing
  • Consuming art
• Visual prompt for talking about emotions (categorisations)

Anxiety and Depression - very common problems with autistic adults

Emotional Toolbox - broaden range of techniques, many categories:

• Self-awareness - interoception, self-regulation
• Physical tools - well-being, energy release
• Sensory tools - comfort, able to learn
• Relaxation tools - feeling calm
• Pleasure tools - feeling good!
• Social tools - feel connected, gain help, combat loneliness
• Medication - help with anxiety, depression
• Inappropriate - self-harm, illegal drugs, misuse of legal drugs, hurting someone
• Thinking - adaptive thinking techniques
  • Maladaptive: catastrophizing, suppression, avoidance - all characteristic of autism
  • Adaptive: self-soothing, other perspectives, disclosure, optimism, get compassion/affection from others

Self-Identity

Often comes from peer rejection & criticism rather than inclusion & compliments - need to mask and pretend

Suffer from alexipersona - a lack of vocab to describe personality characteristics

Need to develop a positive vocabulary around personality and abilities

• personality: kind, caring, loyal, honest, determined, brave, humour
• abilities: drawing/art, memory, expertise, ...

Self-affirmation pledge

• I am not defective - I am different
• I will not sacrifice my self-worth for peer acceptance
• I am capable of getting along with society
• I will ask for help when I need it
• I will be patient with those who need time to understand me
• I will accept myself for who I am

Gender Dysphoria

• 30-50% of referrals are autistic! Why so many?
• There is an element of needing to address the autism to find out where you are

Regulation and Sleep

Managing Meltdowns

• Explosion - can cleanse the system/clear the air
• Depression attack - an emotional implosion - can be intense but are fortunately brief
• DO: stay calm, affirm & validate the emtion, one person, minimal speech, confirm it'll pass, safe place for solitude
• DON'T: interrogate, focus on punishment/consequences, jolly up or use comfort/affection

Sleep and Autism

• Racing thoughts and ruminating inhibit falling asleep
• Can wake next day in terrible mood when went to sleep OK
• Can end up switching day/night cycle and becoming a recluse
• Melatonin can help - defective metabolism and secretion of melatonin are associated with autism

What helps with sleep?

• The right level of sensory stimulation
• Relaxation (music, sounds/dialogue from familiar movies)
• Hot bath

Computer Games

Lots of attractions

• Community/achievement/identity/popularity/social network
• can succeed via talent+practice with in-person social not holding you back
• thought blocker, temporary escape, excitement and instant gratification
• social structure laid out
• avatars/persona
• games are designed to be addictive!

So needs to be controlled! Gradual reduction. Remove from bedroom. Recommendation is 2h or less and not every day!

Recluse

A "cure" or "solution" - the problems start when you walk out of the door

• peer rejection
• associated with PTSD/depression
• needs encouragement to gradually build social engagement

Encouraging friendship

• find each other on the periphery
• lunchtime/afterschool SIGs
• conventions
• animals as friends - hmm not Isabel or me, that one
• internet friends
• drama classes, drama therapy

Social skills training can cover a range of topics:

• entry + exit strategies
• get-togethers
• teasing, feedback
• dating etiquette
• peer pressure, exploitation
• resolving argument

Bullying

40% say it's a daily experience!!! Two/3 times a week, a further 33% Typical teenagers: 10%

Where?

• hallways
• school transport
• during sports
• secluded locations

Usually happens with an audience of bystanders

Effects

• negative self-belief
• why me? ruminating, replaying
• trying to determine motives
• can't forgive or forget until they understand

School is a "war zone" -> PTSD. Contributing factor to eating disorder, masking

very damaging

Post-Vietnam war vets have said that school was worse than being in a war zone!

How to reduce?

• constantly shifting as the predators adjust
• more information on the consequences for the bullies - they are also harmed!
• rescue both parties
• include the silent majority
• consequences for not intervening!
• get boddies with social status - sports guys

Romantic Relationships

How do these even get started?

• Can be several years behind NT.
• Can simply not be interested - and that's OK!
• Perhaps the subtle flirting/romance arena is simply not applicable?
• If one does want to engage, there are issues with expression of affection, misinterpretation of intentions

Criteria

• Higher: Trust, fun, understanding
• Lower: physical attraction, sex

Navigating through sex - what do you wear? talk about? act? steps?

Pornography

• Social isolation drives a retreat into porn
• Avoids the risk of ridicule or rejection
• Computer associated with it
• Becomes a special interest
  • This can lead to illegal stuff - an uncritical collection that leads down dark pathways
• Lack of conventional bondary recognition
• Lack of conventional outlets with peers
• Can lead to compulsive behaviour driving bad routes

Tertiary Ed

• First year is crucal to get through
• Organisation is key - how to do the work?
• Lots of new conventions and routines
• Try to make suire there's an appropriate workload
• Mentors can be very useful
• Faculty experience: group discussions can be an issue
  • talk too long or too little
  • lack of adjustment when ploughing through matieral
  • inflexible thinking generally
  • low tolerance of ambiguity
  • don't change minds
• BUT: depth of passion can help

13Jan24: Autistic Girls and Women

https://livestream.com/accounts/4972777/events/11017619/player?width=640&height=360&enableInfoAndActivity=true&defaultDrawer=&autoPlay=true&mute=false

Agenda

• Prevalance Rates and Gender Ratio
• Camouflaging
• Screeners
• Self-Identity
• Undersanding Strong Emotions
• Anxiety (very very common)
• ADHD
• Eating disorders (1 in 3 of those in clinics are autistic)
• Gender dysphoria
• Friendships
• Relationships including Motherhood
• Employment

Prevalance Rates and Gender Ratio in Autism

Women are caught later and public awareness of prevalence has lagged

• In 8 year olds, it's 4% of boys, 1% girls
• Average age of girl diagnosis is 12 (high school, mental health referral)

One classic - boys are caught because they're elective mutes etc - girls because the wheels come off after primary school

Why is it missed? The answer is... camouflaging - the next section

Camouflaging

Intellectual compensation for lack of in-built social machinery ("emulating hardware in software").

Masking - high effort, expends energy and builds anxiety. The crash comes later - melt down when you're out of it - can feel a lot of anger at others - can escape into fantasy book/music worlds

Dangers of Camouflaging:

• Exhausting!
• Leads to mental ill-health: depression and anxiety, suicidal thoughts
• Not accepting their autistic self
• Creates unreal perceptions and expectations
• Camouflaging to fit in, avoid bullying/abuse, to be accepted
• Fear of people withdrawing (they sense the difference)
• Lost "the real me" - grief

Both genders camouflage in the same numbers - but males are way more limited in the contexts they use it (work only!) - females over more situations, more frequently.

(Which is why females suffer more from camouflaging than males.)

You get less camouflaging when an individual has high autistic identification and openly discloses their diagnosis to others

Themes

• 1: Camouflaging can be a dangerous "high-wire act": end up being a "patchwork of acts", when you slip up people "other" you, the gaps show - can be remedied by self-explanation
• 2: Camouflaging can be good! Gives access to the social world - acceptance - can meet people, find work, relationships, partners and have children
• 3: Camouflaging may not be necessary: people can feel their friends are accepting, employers are making adjustments - perhaps you can relax, or at least be more judicious?

But how do you un-mask safely?

Camouflaging significantly positively predicted scores on measures of:

• Generalised anxiety, depression
• Social anxiety, performance anxiety and self-criticism
• Energy exhaustion and burnout

Screening

We are working on identifying female autists earlier. Various age ranges: under 42m, 5-12y, 13-17y, 18+ ... it's hard to validate so there are questions all over the place about effectiveness

Often these give decent indications rather than definitive diagnoses. Work is continuing.

There is controversy over whether we should screen children for autism as a routine matter - the presenters were very much in favour!

Scales

• Imitation
• Social Masking
• Imagination
• Friendship & Play
• Sensory Sensitivity
• Gendered Behaviour
• Compliant Behaviour

Worked for both genders but girls presented differently in Imitation, Gendered Behaviour and Imagination (women clock up Sensory Sensitivity too)

Question Segue: Pathological Demand Avoidance (PDA) and ADHD

PDA Seems to be bigger with females - possibly as a result of higher masking demands?

ADHD Medication can be genuinely useful - anything that helps cognition

Self-Identity

Diagnosis

• Positives: kinder to self, understanding needs, makes sense of past, connection with a community, improved relationships
• Negatives: worry about rejection by others, how to deal with being told they "don't appear autistic" or fit expectations, also Psychiatry uses a deficit-based model => can impair self-esteem

Alexithymia - problems in communicating about the inner self - how to express what's going on - fear that others would not like the inner self!

How can you help people construct a more positive self-image?

Self-Affirmation Pledge

• An example (Liane Holliday Willey): I am not defective, I am different, I will not sacrifice self-worth for peer acceptance, I can get along in society, I will ask for help when I need it, I will be patient with those who need time to understand me, I will accept myself for who I am
• Be a first-rate Autie, not a second-rate neurotypical

This is Me Book

• Positive things to record
  • Personality positives: kind/caring/loyal, honest/speak mind, perfectionist/determined, brave, humour
  • Abilities: drawing and art, models, memory, maths, notive details, expert
  • Values: fairness, social justice, friendship, adventure, altruism, truth/authenticity
  • Social Roles: many - friend, contributor, mother, daughter, blogger, expert, volunteer
• Make a book, one entry per page - examples, evidence

Qualities

• Favourite colours/foods
• Representing character by an animal

Construct a collage to represent your character

Photo Album for positive memories

Embracing your true self

• Define a life for both fulfillment and self-care
• Talk to other autistic adults who have had similar experiences and are committed to finding themselves

Plan your own path, e.g.

• female psychologist
  • qualities: highly empathic, compassionate, intelligent, special interest in autism
  • path: study psychology to understand people, read books on body language and friendship, work as psychologist specialising in autism
• person 2
  • qualities: quiet, love own company, love learning, autonomous, love animals
  • path: a career without a lot of social engagement: wildlife ranger, a few online friends, rare meetups, opportunities to study animals for research
• person 3
  • qualities: creative/imaginative, introverted, visual thinker, artisitic, films and travel
  • path: go to Uni for film making, career as indy film maker across countries, rich inner life with imaginary friends

There are books on masking

• "Taking off the Mash" - exercises to understand and minimise effects
• "Autism and Masking" - how and why, impact
• "Unmasking Autism" - devon price
• "Different, not less" - Chloe Hayden embracing your true self - might be worth considering for Isabel?

Understanding Strong Emotions for Autistic Girls & Women

There's an inability to regulate/manage emotion, which rests ultimately on issues with the cognitive aspect of empathy. This can be particularly problemative with negative emotion, whether from oneself or others.

Components of empathy

• cognitive: understanding perspective - often not so much there
• affecting: feeling (the pain) - often unbuffered - stay out of psych hospitals!
  • different brain centres for positive and for negative emotional empathy!
• behavoural: know how to help - can get that wrong
• compassionate: want to help - that tends to be strong

Contrast with sociopaths: great at cognitive and behavoural - not so good at affective and compassionate

Forensic psych: both sociopathy and autism - not a great mixture!

cognitive empathy deficity: Baron-Cohen 1985+

• mistitled as "lack of theory of mind" but that's a shit name (my terminology) as it overlaps with Piaget etc
• this actually means more that you can't infer from cues: faces, gestures, tone of voice, body language
• can misinterpret as anger when it's something else

double empathy problem of autism: Damian Milton 2012

• the difficulty goes both ways!
• autistic person doesn't display in the same way that NT does, so NT misinterprets them too
• a two way breakdown in communication - it's not that the problem lies solely within the autistic person

hyper-arousal empathy hypothesis of autism: Kimber et al 2023

• hyper-sensitive to emotions of others
• 78% of a sample self-identified overwhelming affective empathy
• avoidance of some social situations due to sensitivity to "negative vibes"

A different sensory processing system

• Exteroception: outside world - sound, sight, touch, smell, taste, emotions in others
• Interoception: internal world - pain/illness, heart rate, hunger, temperature, emotions in yourself, alexithymia

Alexithymia

• Don't know how you're feeling
• Can't grasp the intangible negative emotions in my mind and identify/label/communicate about them
• Can be expressed using music/lyrics/poetry/typing an email/art
• A BIG risk factor for developing a mental health condition
• Very common with autistic people
• Problems with regulation - can't moderate internal emotional response to stimulae

You can get traction on this but you need to practice

The interoception curriculum by Kelly Mahler.

• Meditation
• Yoga
• Mindfulness

Understanding and expression of emotions

• how to relax? (as opposed to masking anxiety)
• how to show affection? (continually, rather than just once!)
• there are issues with both positive and negative emotions
• can use sports tech to get feedback on heart rate etc - helps detect anxiety, helps increase relaxation

Recovery from social exhaustion

• Two curriculums: educational and social
• Need access to solitude
• AUTISTIC BURNOUT

Austistic Burnout

Autistic Burnout - a highly debilitating condition characterized by:

• Exhaustion
• Withdrawal
• Massive executive function problems

Defining Autistic Burnout

• Generally reduced functioning
• Increased manifestation of autistic traits
• Distinct from depression, non-autistic burnout
• Can include complete social self-isolation
• Need withdrawal and recovery time
• CBT could be counterproductive
• Need to address social issues, sensory environments - reduce the stressors

Preventing Autistic Burnout

• Increased self-awareness of social capacity and sensory overload issues
• energy management - awareness of where you are
• don't mask all the time!

Treating Autistic Burnout

• Withdraw from social and externally-imposed demands
• Spend time on personal interests
• Re-integrate self with external world in a graduated manner
• Gradual return to daily activities but at a reduced level
  • May involve financial cost - change living to suit new circumstances
• Compensate going forward now you know more about your limits

Segue: Energy Management and Accounting

Withdrawal

• Socializing
• Change
• Making mistakes
• Sensory sensitivity
• Daily living skills
• Coping with anxiety
• Over-analysing social performance
• Sensitivity to other people's moods
• Being teased or excluded
• Crowds
• Body shape
• Perceived injustice
• Certain people

Deposit

• Solitude
• Special interest
• Physical activity
• Animals and nature
• Computer games
• Meditation
• Caring for others
• Nutrition
• Sleep
• Reading "happy" books
• Mental health vacation day
• Certain people

Can try colour coding to help categorise

Anxiety

Very common, very tiring

86% of over 300 autistic adults reported having daily problems with anxiety

Autism, Anxiety and Hormones:

• A few studies indicate more Premenstrual Dysphoric Disorder
• Menopause seems to be worse too - more emotional distress from given symptoms, including increased autistic features during menopause

Autonomic Nervous System (ANS)

• Hyper-activated Sympathetic (SNS) (fight-or-flight)
• Under-activated Parasympathetic (PNS) (rest)

=> over-arousal and general dysregulation

Also puberty hormones include anxiety, risk-taking behaviour

Polyvagal Ladder

New to me! To do with vagus nerve so to do with both top-down and bottom-up regulation

• Top of ladder: ventral vagal - prefrontal cortex - safe, calm, calibrated, interactive socialization, well-regulated, creative
• Middle of ladder: sympathetic - emotion - agitation - SNS - mid-brain - amygdala
• Bottom of ladder: dorsal vagal - grief, numbness, denial, anhedonia - reptilian part of brain

All stages have a function but you don't want to get stuck on the wrong rung. Autistic people are vulnerable to getting stuck in the dorsal stage.

Dorsal Vagal: shutdown/situational mutism - mutism, slow/no movements, drop to floor, foetal - to fix: one-on-one, mobilise gently, engage social brain (varied facial expression, speech cadence)

Autism and PTSD

2020 Study

• Higher rates in Autism group (32%) than non-autistic controls (4%)
• Autism group reported more PTSD symptoms, especially re-experiencing and hyper-arousal
• More negative life events, particularly social. These exert a cumulative effect and are experienced in a chronic, continuous fashion.
• 60% of autism cohort but only 20% of NT reported a social event as their most distressing event.
• suggests autistic females may be particularly vulnerable to PTSD

EMDR can be very autism friendly

Treatment

Components

• ANS regulation huge: breathing, meditation
• Exposure hierarchies: designed with sensory issues, safety, capacity in mind
• Treat trauma!
• Strategies for regulation

Polyvagal implications

• Increase interoception and emtional vocab
• Tone the vagal nerve
• Treat trauma to prevent freeze
• Both bottom-up and top-down regulation

Bottom-up regulation

• Energy accounting
• SLEEP
• Nutrition
• PHYSICAL EXERCISE
• Mindfulness
• Sensory regulation

Top-down regulation

• CBT
• EMDR for trauma
• Mindfulness based therapies
  • Dialectical Behaviour Therapy (DBT)
  • Acceptance and Commitment Therapy (ACT)
  • Treat alexithymia and poor interoception
• Apps - MoodKit, Headspace, Breathe, Calm

ADHD

3 Differentiating Executive Functions

• In ADHD: impulsivity
• In Autism: Inflexibility, Difficulty with planning

Autism + ADHD

• Associated with poorer cognitive performance, social/adaptive abilities
• More likely to develop emotional/behavioural difficulties, espectially externalizing problems
• More difficulties in reading non-verbal communication

Eating Disorders

Re Autism and ED

• Recovery same for autistic and non-autistic
• Autism had more co-occuring conditions (ADHD, Trauma, etc) so greater use of intensive treatments
• Group therapy less effective than individual

Gender dysphroia

Autism 3x to 6x more likely among trans as cis

Causes are an area of active research

Best results for child are associated with a high level of parental support

Depression

High level of depression: 75% of adults with autism have "sadness", and maybe 40% hit clinical depression at some point in their lives. (whatever, I had that once!)

Of course, depression is a very broad spectrum

Autism-specific: "Depression Attack"

• Arrive unexpectedly, externely intense
• Emotional "implosion"
• A desperate need to end the despair
• Can be intense and dangerous (with suicidal ideation) but fortunately brief

If managing an attack, DO

• Stay calm, affirm and validate the emotion, one person, confirm it will go
• Keep other people away, minimal speech, special interest as "off switch"
• Seek a safe place for solitude

DO NOT

• Interrogate
• Jolly up

Emotion Repair Toolbox

• Self-awareness: for self-regulation and clarity of though
• Physical: well-being and energy
• Pleasure: feeling good
• Thinking: to stay in touch with reality
• Social: to combat loneliness
• Relaxation: to feel calm and confident

Friendship and relationahips

Friendship

• Identifying with boys is common - more logical, at least until the hormones kick in
• The friendship landscape can be tricky, especially negotiating bitchiness

Interpersonal

• asexuality is common enough
• can appear to "flirt" and piss people off
• more generally males might not read body language correctly
• also you may miss threat signals from predators

One good strategem: rely on NT friends to help calibrate?

Celibacy can be a perfectly happy route...

Being an autistic mother has its own baggage

• Difficult attitude to vocation (whay they're giving up)
• Unconventional but somewhat conservative
• Confience in maternal abilities
• Distrust of school system => homeschooling

Employment

Autistic women make great employees and experts

• Extensive factual knowledge
• Accuracy, persistence, attention to detail
• Thrive on routine and consistency
• Conscientious

No limits - "astronaut to zookeeper"

Play to strengths, but know weaknesses/challengves - although the latter can be overcome if you're interested

Start career planning early. And consider self-employmment.

23Feb24: Autistic Burnout

Most studies here are relatively recent - driven in large part by autistic people themselves

Definitions and Characteristics

Higgins (2021) Autism 25: A highly debilitating condition characterized by

• Exhaustion
• Withdrawal
• Executive function problems

Provisional criteria are (1) significant mental and physical exhaustion (2) interpersonal withdrawal, with one or more of the following:

• Significant reduction in important areas of functioning (social/occupational/educational/academic/behavoural/etc)
• Confusion, difficulties with executive function and/or dissociative states
• Increased intensity of autistic traits and/or reduced capacity to camouflage/mask

Associated features

• Low self-esteem, not knowing what to do to get back
• Confusion as to whether it's clinical depression
• Loss of self-care/daily living skills, speech, ability to regulate emotions

Symptoms and signs

• More shutdowns and inertia (frozen)
• Increased manifestation of autistic traits - can include complete social isolation
• Need for withdrawal and downtime for recovery - frontal lobes are "closed" - brain fog

Characteristics

• Prevalence unknown
• Can last months or years
• May start during puberty/adolescence
• Can be triggered by life changes (new school, job, promotion)
• May precede and precipitate a diagnosis of autism
• Camouflaging is a barrier to receiving support
• Decreased sense of personal accomplishment
• May affect physical (fatigue) and mental (despair, negativity) health
• Can drop out of university/employment
• Difficulty in reporting emptional exhaustion (alexithymia) and asking for help
• often misdiagnosed as simply depression

Causes

• Lack of autism awareness and accommodations at school, home, work
• Being autistic in a non-autistic world
• Double empathy - problems from both sides
• Coping with social expectations
• Negative evaluation and social rejection
• Lack of social connection
• Camouflaging: not the authentic self
• Sensory experiences (sound, smell, etc)
• Coping with change
• Coping with anxiety
• Demands overwhelm coping abilities
• High personal expectations
• Exhaustion and energy depletion
• Lack of pregress academically and at work

Differential with Depression

Both have

• Decreased energy (exhaustion)
• Social withdrawal
• Executive function difficulties increase

Burnout

• Increased autistic characteristics (sensory sensitivity, difficulting processing social/emotional, increased repitition)
• Passions and interests are still energising (so not anhedonia)
• Social withdrawal is more pervasive, a coping feature
• Sleep and appetite disturbance not a feature

Depression

• Mood low, despondent, despairing
• Anhedonia
• Circular dependency on social withdrawal
• Triad (I am bad, world is bad, will always be this way)
• Suicidal ideation
• Appetite and sleep disturbance

You can have both! Depression the side-effect, burnout the cause

Treatment Research

Conceptualised as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports

Potential solutions

• being understood and accepted by others
• being able to relax
• doing things in more naturally autistic ways
• less masking

Analysis of public posts for themes relating to burnout

• 1 Systematic and pervasive lack of autism awareness (workplace, academia)
• 1.1 Discrimination and stigma (employers can deliberately make conditions worse to force people to resign)
• 2 Chronic and recurrent (often first in childhood/adolescence, buildup of demands, transitions worse, maybe never fully recover, can be months/years)
• 3 Direct impact on health and well-being (exec func, exhaustion, speech, hightened sensory, loss of selfcare, more autistic, more meltdowns and shutdowns)
• 4 a life unlived (altered trajectory, limiting education/employment, relationship difficulties)
• 5 a blessing in disguise? (forces recognition of difference, enabling accommodation and self-awareness, community links - could save your life!)
• 6 self-awareness and personal control influence risk (really helpful to recognise the build-up so can avoid the burnout crisis)
• 7 masking (a leading factor for burnout - identity confusion, greater expectations)
• 8 ask the experts (it's the autistic people who really know what's happening!)

Avoiding burnout

• alexithymia makes it hard to anticipate
• get rest when recognise symptoms
• withdraw to self-preserve

Burnout very often leads to depression. Suicidal ideation common. Doubt own abilities. Issues with self-confidence, self-esteem.

Can get stress-related disorders: chronic fatigue syndrome, fibromyalgia, auto-immune disorders

Assessment Instruments

• Maslach Burnout Inventory (MBI) - for NT individuals - most popular "burnout" but doesn't apply well
• Autistic Burnout Severity Items (ABSI) - new - 4-factor - exhaustion, cognitive disruption, heightened autistic self-awareness, overwhelm-and-withdrawal

Conceptual Model

Conceptual Model of Autistic Burnout (CMAB)

Risk factors

• Higher level of autistic traits (social challenges, coping with change, sensory sensitivity levels)
• Greater use of masking/camouflaging
• Poor mental health and history of being bullied and rejected

Protective factors

• Allow stimming etc
• Passions and interests
• Self-awareness: interoception vs alexithymia, recognise triggers, self-care, boundary-setting
• Social support: family, friends, autistic community

Questions

How do you know it's burnout and fall victim to imposter syndrome (e.g. "it's just laziness")?

• Become familiar with the symptoms
• External validation from others

Getting provision at work

• Formulate as a positive/constructive request e.g. for a quiet space to work in to be more productive

Recovery

Stage 1: recognising

• You may be the last person to know that you're in burnout! Alexithymia etc
• Ask others what they noticed to help you build self-diagnostic capacity
• "pull the plug" - do a temporary withdrawal from social and externally imposed demands: 2-3 weeks?

Strategies

• list situations and experiences that contribute to burnout
• figure out how to manage/avoid them
• communicate this to others concerned
• include accommodations and adjustments needed to reduce stress
• list re-energising activities
• do social experiences that are not intense (e.g. drawing, going to see something)

(Not going onto Stage 2 after months have passed means it's not burnout any longer - might be a mix of mental health issues: depression, trauma ...)

Stage 2: ending burnout and recovery

• spend time on personal interests and nature
• reintegrate with external world in graduated manner
• gradual return to school/work but in reduced level
• embracing autism
• autistic online community has a lot of wisdom, can have autistic mentor
• create a social support network, share experiences and strategies
• be in nature
• be authentic self and only mask occasionally
• delegate responsibilities
• learn how to self-advocate - important in preventing relapse

Energy accounting:

• Withdrawal
  • socializing, change, mistakes, daily living skills, anxiety, over-analyse social, sensitivity to moods in others
  • being teased/excluded, crowds, government agencies, body shape, perceived injustice, certain people
• Deposit
  • solitude, special interest, physical activity, nature, computer games, meditataion, caring for others, nutrition
  • sleep, reading books, mental health vacation day, info on internet, being with pets, certain people

Stage 3: the longer term

Review the effectiveness of new understanding and accommodations

Recognition of personal limits and needs

Consider "pruning" work commitments and part-time employment, or reduced workload, or part-time study

Consider a change of employer/career/course

CBT and Autistic Burnout - a call for caution

• there's a genuine need for withdrawal and downtime/avoidance
• impaired exec functioning will affect the cognitive dimensions of CBT
• ethical Q around using CBT and/or medication to encourage tolerance to an environment that is bad for their mental health
• need to change the environment!

Need to address social issues and sensory environments

Regularly revew energy levels and mental and physical health

Consider Acceptance and Commitment Therapy (ACT) and mindfulness and relaxation strategies

23Feb24: Developing a Positive Self-Identity

Barriers to a Positive Self-Identity for an Autistic Person and How to Overcome Them:

Community

• Negative stigma
• Community lack of understanding
• Adverse interpersonal experiences

Internal

• Over-camouflaging
• Depression and anxiety
• Alexithymia and interoception
• Alexipersona (?)

Negative stigma of autism and mental health

• Understand your own autistic strengths and challenges
• Know that change comes from within you
• Be the difference you wish to see in the world
• Become a keyboard warrior, join online autistic community, join autism advocacy group
• Read literature that embraces autism
• Cultivate friendships with other neruodivergent people

The start of the journey is often difficult

There is frequently baggage from the start: often autism is diagnosed on the back of secondary disorders (anxiety, depression and self-harm, BPD, eating disorders, mutism, gaming addition, gender dysphoria, ...)

But there are major positives to autism too

• Autists can often make better friends than non-autists: not judgemental or bitchy or mean etc - teenage girl peer groups and so on...
• Autistic people are often terrible at giving themselves compliments - at being kind to themselves. This is about compassion, not social tools!

How to explain autism

• Positives: honest, determined, an expert, notice things that others don't, kind, speak mind, enjoy solitude, perfectionist, reliable friend, good at art, liked by older adults
• Difficulties: making friends, managing feelings, taking advice, handwriting, knowing what someone is thinking, being teased, showing as much affection as others expect
• Differences: in perception, thinking, learning and relating - can be very creative - the nest stage of evolution?
• Achievements: many, many science and art achievers

After discovery in adulthood

Can be very positive having a name for what's going on!

Experience of adult women

• Positive: kinder to themselves, understanding their needs, making sense of past, connect with a community, improved relationships
• Negative: facing male-oriented stereotypes, lack of acceptance => impact on self-acceptance, not fitting expectations ("you don't appear autistic"), deficit-based model of psychiatry ("child psychosis", anyone?)

Community Lack of Understanding of Autism

• "Lack empathy": cognitive empathy difficulties are not the same as a deficiency of empathy! Autists have as much affective/emotional empathy as anyone - can be overwhelmed by it in fact
• "Mental disorder": no, a brain difference
• "Savants": some are, some aren't
• "Need to learn social skills to overcome autism": no, it's about finding a life that accepts and embraces how autism works where you can get what you want - not teaching people to parrot/mask endlessly for everything - although goal/need-directed learning is fine!

The "double empathy" problem of autism: difficulty goes both ways - NT people misread autists too!

The problem with the "empathy deficit" narrative places the problem within the autistic person - also can give people socipathy vibes.

Self-affirmation pledge

From Liane Holliday Willey, over 30 years ago

• I am not defective - I am different
• I will not sacrifice self worth for peer acceptance - I am capable of getting along with society
• I will ask for help when I need it - I will be patient with those who ned time to understand me
• I will accept myself for who I am

Adverse interpersonal experiences - rejection, bullying, abuse/trauma

If others are discomforted by you, that will leave you in an unsafe place - you will be the "other"

Rates of bullying for autistic teenagers

• Daily: 40%
• 2/3 times a week: another 33%
• Typical teenagers: more like 10%

Effects: poor self-esteen, anxiety and depression, social isolation ("giving up" on people)

Social isolation allows autists to avoid the challenges

PTSD

• autistic 32% compared to non-autistic 4%
• autistic people report a lot of correlated diagnostic criteria

Seeking treatment for PTSD can help when you've got the symptoms

Questions at half-time

How can you foster a support system that allows for independent living?

"Without help I forget to eat, clean, shower, etc - what do I do?"

Answer:

• you need an external prompt. Has been your parents - need something else instead - post-its etc.
• take things one by one
• you can build habit so you avoid the need for prompting
• you can get support workers who provide the prompts
• medication can help: e.g. ADHD and executive function
• can use modern tech!

My 15 year old daughter is too rigid in her thinking - how can I help?

Crossover between PDA and Autism - anxiety is the driver - I don't have the capacity!

Don't make it a direct battle - needs support and teachable moments, a gradual thing

She won't listen to parents anyway1 It's not just about autism. Perhaps get a sibling or friend to have the conversation.

Write it down on a big piece of paper - everyone's perspectives - lay it all out, give them time (half an hour?) to think - gives them processing time and space

How do I avoid addiction when burning out?

Beating unhealthy addiction is about developing mindfulness - be aware of the urges

"surf the urges"

Often it's about a lack of connection and loneliness

How can I contest the medical model where it's the autists, not the NTs, who must adjust?

Centre on yourself. It's all about you thriving - don't centre on the relationship directly.

Live the best life that you can - that's the good way to focus.

Yes, it's heavy lifting - but it's rewarding too.

Overuse of camouflaging

Only really a concern in the last 10 years - since so many autists are good at masking!

It's exhausting! It creates unreal perceptions and expectations. You feel you lose your real self - grief

Why people lessen their camouflaging

• diagnosis: too exhausting - can't see the point - friends accept - employers adjust
• you're with people who understand you

Dropping the mask can be brave and positive. Refuse to perform! It's radical and revolutionary but also an act of self-love.

Unmasking safely

• 1: self-awareness - of your sense of self (body and mind) - values, interests, strengths and challenges
• 2: self-acceptance and self-compassion
• 3: knowing when it's safe

It's safe to unmask when the people you observe

• treat others with kindness and respect
• speak respectfully about others when they aren't there
• demonstrate openness and curiosity about individual differences
• are willing to adapt their behaviour

Depression and Anxiety

Components:

• Negative self-belief and lack of self-agency
• Hopelessness about the future
• Fear of change
• Avoidance of new situations
• Avoidance of people
• Each needs treating before or in parallel with self-identity work

Alexithymia

Inability to engage with your emotions - the reflexive version of the impairment in cognitive empathy

Strategies

• Write it out - even in an email!
• Use music or art!
• Poetry, lyrics, novel writing
• Reading fiction
• Scenes from movies, passages from a book

Interoception

The internal world

• physical negatives: pain, illness, hunger
• temperature
• heart rate
• feelings within yourself
• sense of self

The "interoception pyramid"

• top: others, inference based on your own interoception
• middle: decent awareness of self
• bottom: first glimmering of interoception

Developing self-awareness

• look at yourself in the mirror for an extended period of time
• mind-body practices - yoga, meditation, qi gong, aikido, karate, equine therapy, bike riding, etc

Alexipersona

A lack of words for personality description

"Discovering who I am" - eye-gazing into a mirror

"This is me" book

• Good things: kind, caring, loyal, honest, speak mind, perfectionist, determind, brave, humour
• Abilities: drawing and art, writing, music, acting, memory, maths, details, compassion, expert on ...
• Values: fairness, social justice, friendship, adventure, altruism, truth, authenticity
• Social Roles: friend, contributor, mother, daughter, blogger, expert, volunteer, your cat's person ...

Self-compassion

• This ignites the parasympathetic nervous system (PNS)
• The PNS gives you a sense of safety
• Build it - enact actions that soothe you

Uncover your autistic strengths

Accept and/or manage the challenges

21Mar24: Exploring Depression and Beating the Blues

Some background info on Depression and Autism

2021 review of depression in children and teenagers:

• Incidence in children and teenagers: 35% self-report, 75% parent-report
• Alexithymia? More self-report as go from 10 to 18 years
• Girls more than boys (internalising vs externalising)

Symptom profile dominated by anhedonia. Social difficulties are a driver (including bullying). Other factors are negative cognitive strategies and family history of depression.

Adults:

• "I can't say I'm normal" - from a youg age, engaging in negative self-conversation, self-criticism for perceived social failings, maintaining low mood
• Diagnosis helps - can conceptualise and tackle. Needs processing, coming to terms.
• "I can't function in the world" - a lack of engagement with others to get help from them
• Isolation: cannot/ "should not" reach out for support, or to be honest. Don't want to be a burden, even with e.g. suicidal ideation! Can still be lonely in the company of others (they're having fun, I'm not)
• Common connection with others: with others who identify as autistic, shared experiences, importance of acceptance, of the real sefl
• Disconnect between mind and body: it's not a lack of emotion, it's lack of ability to process and express the emotion - interoception is very useful

Coping mechanisms:

• Self-improvement: strive to achieve
• Go to gym, eat healthily
• Listening to favourite music
• Time with friends and family
• Pursuing their interests
• Get professional support
• CBT? good for some, but not a panacea - depression makes it hard to complete between-session tasks, but these are necessary for CBT

Prevalence of clinical depression in adults is high: 23% current, 37% lifetime

Alexithymia is a very strong predictor for depressive symptom severity

• difficulties perceiving and describing feelings-in-body (interoception) and emotions
• diminished vocab
• can't convert thoughts and emotions into speech

Symptoms

• sadness, emptiness, hopelessness, sense of being a failure
• anhedonia: little interest/pleasure
• weight loss, decrease in appetite
• difficulty sleeping
• agitated or slow movements
• fatigue/loss of energy
• worthlessness, feelings of guilt
• difficulty thinking/concentrating; indecisiveness
• recurrent thoughts of death or suicide

Autism-Related Symptoms

• interest shift
  • special interest chances to something morbid/macabre
  • watching movies with theme of death/despair
  • an attempt to understand their own dark thoughts/inner emotions
• depression attack
• systematic pessimism
• anger as an explosion to "cleanse the system"
• difficulties with self-reflection
• avoidance and suppression of emotion
  • avoidance due to confusion (alexithymia) or unbearable pain and distress
  • suppression due to lack of control, fear of power
  • causes not addressed - so depression continues
  • emotion is held in body and mind => meltdowns, unhelpful relationship dynamics, health issues

Pause for questions: There was a fair bit of discussion of Autistic Catatonia - thankfullly not something we need to deal with

Characteristics of depression associated with Autism

• Camouflaging depression and autism: hide true feelings - increases anxiety and depressino - decreases sense of self
• Ineffective social support: double empathy problem - self is from peer rejection/abuse rather than compliments and acceptance - hard to trust - fewer friends - don't benefit from happiness of others
  • Fighting this with positive self-identity/self-esteem can be very effective

There are similarities between burnout and depression: decreased energy, social withdrawal, reduced executive function Differences:

• Burnout: increased autistic characteristics (sensory, social/emotional processing difficulties, increased repetition) but not anhedonia so much, social withdrawal is more pervasive and is adaptive coping mechanism, usually sleep more, appetite OK
• Depression: mood is low, anhedonia, social withdrawal can be a cause and maintenance, triad (I am bad, World is bad, it will always be this way), suicidal ideation, appetite disturbance, sleep disturbance

Treatment

• Burnout needs withdrawal and downtime, hits your cognition, need healing time and environmental modification - so CBT is not necessarily all that great
• So maybe not CBT classic
• But Acceptance and Commitment Therapy (ACT) is a newer take which shows promise

Assessment

• IN HANDOUTS: (1) Reasons an Autistic person can feel bad
• (2) Depression, Anxiety and Stress Scale (DASS) - 42-item self-report - https://www.depression-anxiety-stress-test.org/take-the-test.html

"Exploring Depression" programme

• self-help intervention
• best with a support person
• tackles alexuthymia
• lots of structure and visuals (weekly planners) - apparently visuals are very common - although verbalizers can have more body disconnection issues
• self-monitoring
• identify what's working and adapt
• an eclectic range of tools to recognise and manage difficult emotions

Designed over six years - for mild-to-moderate depression

Book: Exploring Depression and Beating The Blues

a 3 minute self-awareness activity starts each of the ten stages of the programme.

Stages

• 1: strengths, qualities and abilities: self awareness - there are 3 self awareness exercises - available on the website - alexipersona
  • how these are an advantage in terms of friendships/relationships, self-esteem/self-identity, enjoyment of life, employment
  • "This is Who I Am" book
  • Start an acknowledgement diary - record what you give or receive - do a set number per day - 2 for you, 2 to others
  • Also come up with potential list of reasons for feeling sad - used in next stage
• 2: what is depression? why do you feel and stay depressed - measuring it - energy accounting
  • start with stage 2 list, choose 5 most important reasons, measure power
  • signs: self-critical, apathy, slowing down of thoughts and actions - may be unique, idiosyncratic signs too
  • measuring: personal signs at each level - overcome alexithymia - different strategies can work at different levels of depression
  • why do we stay depressed? 50% genetics, 40% own actions. 10% external - but overall a cycle brain bad -> no activity -> no outcomes -> brain bad
  • need to analyse/understand your own cycle of depression
  • energy accounting - too much depletion in daily life - 0 to 100 - quantify
    • downers: late to school, crowds, other people's bad moods/problems, noise in class
    • deposits: reading harry potter, dancing in bedroom, talking to boys at school, quiet time in bedroom
    • balance the books!

03:45 (just after lunch break)