9 - Common co-occurring experiences

what is the difference between autistic individuals and the rest of the populations’ mortality?

Autistic people live ~6 years less than avg. ~7 with intellectual disability. -> coproduced with 4 autistic people and a representative from the NAS.

• Anonymised data from GP practises, medical records of diagnosed autistic people

• 171,300 non-autistic, 17,130 autistic, with learning disability, 64,500 non-a, 6,450 a

• There is a gender difference too, a lot of variation -> those who

• People with an autism diagnosis have a shorter life expectancy than those without

what are the limitations on the study of life expectancy

• absence of information on cause of death

• no information on gender diversity

• underdiagnosis - not possible to generalise findings

how may GP’s confidence in caring for autistic people act as a barrier to healthcare?

~40% of GPs had no formal autism training, limited knowledge of how to provide better healthcare to autistic people, if GPs had a higher score on this scale the provision was better

• many did not have the confidence to support autistic people

what are some adverse outcomes in delayed and additional healthcare treatment

• untreated mental health and physical health

• missed specialist referral

• should have attended sooner

• additional treatmenr

• untreated life threat

• didnt attend screening

what are some barriers to healthcare access

• early barriers; including predictability, environmental challenges and sensory/interoceptive differences.

• communication mismatch ; e.g. masking

• doubt in self and doctors; self-doubt, doctor-patient relationships

• helplessness and fear

• healthcare avoidance and adverse health outcomes

What does the SPACE framework propose would help?

sensory, predictability, acceptance, communication, empathy

how may you support sensory needs?

• turn off/down artificial lights

• consider environmental sound/provide noise cancelling headphones

• avoid wearing strong perfume, consider ventilation

• respect sensory preferences when considering nutrition

• promote sensory-friendly clothing choices

• understand the need for proprioceptive input

• be aware that non-verbal reports of pain where possible

how may you make acceptance and empathy more suitable

neuro-affirming approach, understand distress behaviour

empathy may look different in autistic people, understand that it may be hard for healthcare providers to empathise

how can healthcare be made better for autistic individuals

• training, knowledge and awareness

• avoid fear and embarrassment and have transparent communication

• involve them in healthcare decision making

what are the % of autistic people that also experience ADHD, Anxiety and depression

• ADHD 28%

• Anxiety 20%

• Depression 11%

are autistic people more likely to be given diagoses of co-occuring mental health issues

yes, but many of these are perhaps misdiagnoses as autistic characteristics become confused with symptoms of a mental health condition and so are not treated properly

define camouflaging

pressure to ‘fit in’ with neurotypical social communication, individuals with autism may develop coping strategies

what are the three subscales measured by the CAT-Q

• masking: strategies used to hide autistic characteristics or portray a non-autistic persona

• compensation: strategies used to actively compensate for difficulties in social situations

• assimilation: strategies that reflect trying to fit in with others in social situations

what group of people are most likely to score highly on the CAT-Q

female, gender diverse and late-diagnosed individuals

why does camouflaging happen

• lack of autism awareness and acceptance in society

what is the impact of camouflaging on autistic individuals

spending lots of time camouflaging is the most damaging for autistic adults mental health, however some believed it helped them too

what is the influence of environmental factors on camouflaging

• participants camouflaged less when there were autism-affirming cues, however, high inter-partcipant variability

• pps who more strongly identified with the autistic community responded with more intensity to autism-affirming (vs stigmatising) cues

what were the findings of camouflaging in the 2 year longitudinal study

• baseline camouflaging associated with baseline MH difficulties, camouflaging was stable over time

• people with higher initial camo. there was a decrease in MH difficulties

what is autistic burnout

a syndrome conceptualised as resulting from chronic stress and a mismatch of expectations and abilities without adequate supports. characterised by a pervasive long-term (3 months+) exhaustion, loss of function and reduced tolerance to stimulus

what are potential solutions to burnout

• individual/community/peer support

• attending to autistic needs/unmasking

• reduced activity, setting boundaries asking for help

• understanding patterns and making strategic decisions

what is the estimated prevalence of AuDHD

28%

what does camouflaging look like in AuDHD

• camo. more than adults who just have ADHD

what is the co-occurance rate of learning disabilities and autism

1/3

• more significantly unmet medical and MH care and poorer care-giver reported health quality

why are those with learning disabilities often excluded from research

difficulties with consenting

• less than ½ of studies use adaptations or accomodations, few co-produced studies, only 2/24 self-report measures validated for autistic people

what does research show that AFAB autistic people struggle with more

• higher BMI

• reproductive health diagnoses

• pre-diabetes symptoms

• irregular puberty onset

• menstrual irregularities

outline issues surrounding birthing based on the SPACE model

• Sensory: feeling overstimulated

• Predictable: the need to build rapport with healthcare professionals, the need for factual information

• Acceptance: feeling judged, poor understanding of autism

• Communication: not asking for help doesnt mean not needing help, need for autism tailored communication

• Empathy: feeling uncared for

how do autistic people experience menopause

• 2 studies found autistic people worse menopause symptoms than non-autistic people

• said menopause symptoms impacted work and relationships

• changed how autistic people felt about themselves