L9 Co-occurring Diagnosis and experiences

The O'Nions et al. (2024) Lancet study on autistic life expectancy used data from what source, and was co-produced with whom?

Anonymised GP practice records; co-produced with 4 autistic people and a National Autistic Society representative

In the O'Nions et al. (2024) study, what were the approximate life expectancies for autistic people WITHOUT a learning disability, compared to non-autistic controls?

mid-late 70s vs. controls early 80s

In the O'Nions et al. (2024) study, what were the approximate life expectancies for autistic people with a learning disability?

early 70s

Name three limitations of the O'Nions et al. (2024) life expectancy study

No cause of death data; no gender diversity information; underdiagnosis means findings cannot be generalised

Unigwe (2017) measured GP’s self-efficacy in caring for autistic patients on a scale of 1-10 – what was the overall mean score and what does this suggest

less than 5, suggesting GP’s have low confidence in caring for autistic patients

In Unigwe (2017), what 3 tasks did GPs confidence score lowest on

managing the care of children with autism, managing the care of adults with autism, and knowing which medications to prescribe

Complete these barriers to healthcare

long delays, support for, local services, families, GP remit, too short, specific training

Doherty (2022) Open Study aimed to identify self-reported barriers to accessing primary care by autistic adults – was is methodologically positive or negative, and why

positive, because it was autistic-led with autistic medical doctors as researchers

According to Doherty (2022), autistic adults reported much higher rates of adverse outcomes in delayed/additionally health care treatment than non-autistic adults – name 4 outcomes

(any 4 of 7) untreated mental health, untreated physical health, missed specialists referral, should have attended sooner, additional treatment, untreated life threat, and do not attend screening

What did these adverse outcomes correlate with/potentially underly

difficulty attending a GP

Shaw et al identified 5 themes of healthcare barriers in autistic adults – what are they (they feed into each other – so consider order of themes)

early barriers, communication mismatch, doubt (in oneself and from doctors), helplessness and fear, and healthcare avoidance and adverse health outcomes

Can we trust the approach used by Shaw et al, why? (3 comments)

yes because of autistic-led researchers and a large and gender diverse sample

What was one drawback about the sample used by Shaw et al

WEIRD

In Shaw et al model’s, epistemic injustice is the overarching concept that runs alongside, what does it mean

not being believed or taken seriously as a knower

Can you remember who Jim Sinclair is? What did he co-found and pioneer

Autism Network International and the neurodiversity movement

Jim Sinclair also founded Autreat – what is this

retreat and conference for and by autistic people

Can you remember what acronym SPACE stand for as a framework for autism

sensory, predictability, acceptance, communication, empathy

In the SPACE framework, the model also distinguishes 3 types of “space” – what are they

physical, temporal, and emotional space

Under SPACE framework, name 1 practicality for Sensory – Sight

(any 1 of 3) turn off/down artificial lights, avoid highly stimulating decor, promote the use of sunglasses

Under SPACE framework, name 1 practicality for Sensory – Sound

(any 1 of 4) consider environmental sounds, reduce auditory clutter, avoid conversation in noisy environment, promote the use of noise-cancelling headphones

Under SPACE framework, name 1 practicality for Sensory – Smell

(any 1 of 4) avoid wearing perfume/highly scented cosmetics, avoid air fresheners, avoid highly scented cleaning products, consider ventilation/open windows where possible

Under SPACE framework, name 1 practicality for Sensory – Taste

(any 1 of 2) consider test and texture of medication, consider non-standard medication formulations where necessary

Under SPACE framework, name 1 practicality for Sensory – Touch

(any 1 of 3) avoid causal touch, promote sensory-friendly clothing choices, sensory aids such as weighted blankets

Under SPACE framework, name 1 practicality for Sensory – Temperature

(any 1 of 2) consider environmental temperature, adjust temperature where required

Under SPACE framework, name 1 practicality for Predictability

(any 1 of 4) give realistic information in advance, ensure clear signage in physical spaces, provide photos/videos of the physical environment and staff, allow waiting in a familiar environment

Under SPACE framework, name 1 practicality or Acceptance

(any 1 of 4) neurodiversity-affirmative approach beneficial, understand autistic stimming and monotropic thinking patterns, facilitate need for detailed factual information, understand distress behaviour

Under SPACE framework, name 1 practicality for Communication

(any 1 of 4) understand autistic verbal and non-verbal communication differences, know that communication ability is reduced by anxiety and sensory stress, clear unambiguous communications required, avoid phone-based appointment systems

Under SPACE framework, name 1 practicality for Empathy

(any 1 of 2) recognise that autistic people feel empathy but may display it differently, empathy towards autistic patients may be more challenging for non-autistic healthcare providers

What is expected and to be avoided under the SPACE framework of physical space

need for increased personal space and proximity to other people where possible

What 2 things should be allowed for under the SPACE framework of temporal space

increased time to respond to questions and decision-making

What is expected and to be allowed under the SPACE framework of emotional space

difference in emotional expression and solitude to recover if distressed

A systematic review by Doherty A.J. et al. (2020) identified six key barriers/facilitators to primary care access for autistic people and those with learning disabilities. Name them

Training; Knowledge and Awareness; Communication; Fear and Embarrassment; Lack of involvement in healthcare decision-making; Time

Approximately, what is the prevalence rate of ADHD in autistic people

late 20s% (28%)

Approximately, what is the prevalence rate of anxiety in autistic people

20%

Approximately, what is the prevalence rate of depression in autistic people

early 10s% (11%)

Au-Yeung et al (2018) studied perceived misdiagnosis in autistic adults. Are autistic individuals more likely to report receiving mental health diagnoses (compared to non-autistic participant)

yes

In Au-Yeung et al (2018) study of misdiagnoses of mental health in autistic adults – roughly what % of autistic participants disagreed fully/partially with their mental health diagnosis

over 40%

Au-Yeung et al (2018) identified two main themes explaining why autistic people disagreed with their mental health diagnoses – what were they (hint - confusion, consequence)

e

Can you remember how Juan (a late diangosed autistic adult) described the consequences of masking on his wellbeing

it is damaging and takes a huge amount of energy due to constant thinking

Define camouflaging

pressure to fit in with neurotypical social communication causes individuals with autism to develop coping strategies to compensate for this

What is the questionnaire that measures camouflaging

camouflaging autistic traits questionnaire (CAT-Q)

What are the 3 subscales of camouflaging identified by the CAT-Q

masking, compensation, and assimilation

Define masking

strategies used to hide autistic characteristics or portray a non-autistic person

Define compensation

strategies used to actively compensate for difficulties in social situations

Define assimilation

strategies that reflect trying to fit in with others in social situations

Which sex showed significantly higher camouflaging scores across all CAT-Q subscales

females

Complete these motivations for camouflaging

functioning member of society, normal, connect, stress

Briefly, what can be the consequences of camouflaging (3 thoughts)

questioning/betraying identity, draining, and not seeming autistic enough

Higher CAT-Q total scores were positively associated with higher scores on which two mental health outcomes

depression and anxiety (and stress)

Bradely (2021) found that all autistic adults believed camouflaging was harmful to their mental health – true or false

false, most thought it was harmful, but some thought it helped them too

Since some autistic people found that camouflaging helped them, what was the unexpected finding of longutindal findings on camouflaging and mental health differences (initial baselines vs end)

for people with higher initial levels of camouflaging, there was a decrease in mental health difficulties (and vice versa)

How does the environment influence tendency to camouflaging

autism-affirming (vs autism-stigmatising cues) reduce need to camouflage

Did higher levels of camouflaging and higher levels of anxiety replicate across countries in a cross-cultural research study on camouflaging

yes

What two subgroups of autistic people can the cross-cultural research study not generalise to

those with learning disabilities or are non-speaking

define autistic burnout – autistic burnout is defined as a syndrome resulting from ? and a mismatch of ? and ? without adequate supports

chronic life stress, expectations, abilities

What are 3 characteristic of autistic burnout

chronic exhaustion, loss of function, and reduced tolerance to stimulus

How is autistic burnout similar and different from depression

similar symptoms but trigger is different

How does the trigger for burnout and depression differ

burnout related to social interaction demands, masking fatigue, and overload

What two factors (each resulting from life stressors and barriers to support) contribute to “expectations outweigh inability” in Raymaker et al’s model of burnout

cumulative load and inability to obtain relief

Name 4 life stressors contributing to autistic burnout from Raymaker et al model

masking, expectations, disability management, and life-change stress

Name 4 barriers to support that prevent relief from burnout according to Raymaker et al

gaslighting/dismissal, poor boundaries/self-advocacy, can’t take a break, and lack of external resources/support/services

what are the 6 domains of potential solutions for autistic burnout (use the strategies within as clues)

acceptance and social support, being autistic, formal supports, reduced load, self-advocacy and health, self-knowledge

Name 4 experiences that are common to both autism and ADHD (shared traits in AuDHD)

sensory differences, intense focus on specific interests, rejection sensitivity, executive dysfunction

In Van der Putten et al (2024), between the autistic group and ADHD group, which group had the lowest total camouflaging scores

ADHD group

In Van der Putten et al (2024), which type of traits – autism or ADHD – best explained camouflaging levels in people with ADHD and/or autism diagnoses

autism traits

Approx. what proportion of autistic people also have a learning disability

1 in 3

Diagnostic criteria for learning disability include both significant limitations in ? and ? functioning

cognitive, adaptive

Menezes et al. (2021) found that autistic young people with co-occurring learning disability had greater unmet needs in which specific area compared to autistic peers without LD?

Mental health service needs (not medical care needs generally)

Why are autistic people with learning disabilities frequently excluded from research?

Difficulties with the consenting process

A systematic review on self-report methods for autistic adults with LD found striking gaps – what 3 gaps did they find

most measures were not validated for autistic people, few used adaptations or accommodations, and no studies were co-produced

Weir et al (2022) explored health burden between autistic and non-autistic adults, what 3 physical/health conditions were autistic women at higher odds of having

(any 3) arthritis, neurological condition, anorexia, ADHD, bipolar, depression, insomnia etc etc

Do autistic females or males show generally higher prevalence of physical health conditions

autistic females

What physical health condition is strikingly more prevalent with autistic females

asthma

In these research studies on physical health, what are 3 biases of the sample

UK, female, highly educated

In one study comparing physical health conditions in control vs older autistic groups, what 2 conditions was significantly more prevalent in the older AU group

mild cognitive impairment and arthritic conditions

In the same study comparing mental health conditions in control vs older autistic groups, name 3 mental health conditions that were significant more prevalent in older AU group

any anxiety disorder (GAD, social anxiety, panic attacks), anorexia, personality disorders

What 5 reproductive/physical health features are more prevalent in autistic people assigned female at birth

higher BMI, reproductive health diagnoses, pre-diabetes symptoms, irregular poverty onset, and menstrual irregularities

One study surveyed autistic AFAB adults about primary care – roughly what % reported that primary care staff never seemed to know how their autism affected their menstrual experience

over 90%

The "Autism from menstruation to menopause" study (Grant et al., 2024) uses what research approach, and specifically includes which 3 often-excluded groups?

community participatory research, includes non-speaking/semi-speaking, those with learning disability, and those from marginalised ethnicities

What are 6 considerations identified in a systematic review on menstruation

education/skill development, preparation, personal awareness of puberty-related changes, management, support, impact of bleeding

Complete how SPACE framework applied to autistic birthing experiences

overstimulated, rapport, judged, not needing help, autism-tailored, uncared

One study found autistic people had worse menopause symptoms than non-autistic people – name 3 types of symptoms recorded

(any 3) mental health/irritability, cognition/fatigue/functioning, sleep, increased sensory sensitivity, pain and headaches, communication changes

How does menopause symptoms affect autistic people and aspects of life

how they felt about themselves and impacted work and relationships

Interoception and monotropism are two underexplored explanations for physical health outcomes – what does each mean

interoception guides the sensing, interpretation and integration of the body and monotropism is the tendency to focus on single tasks

How can interoception help promote bodily autonomy and integrity – through what 3 aspects of daily life

self-awareness, emotional experience and regulation, and activities of daily living

Why is monotropism significant to autistic people’s physical health

hyper focus causes autistic people to fail to detect interoceptive signals (e.g. hunger, pain, need for toilet)

A key gap noted in interoception research is the lack of ________ research involving autistic people

Participatory (co-produced)