current issues Flashcards
past approach to research
hypothesis forming and then seeking out populations to test these hypotheses
then analyse data and publish conclusions relating to that population
this is a problematic approach
define coproduction
the process of conducting research in partnership with the population you are focussing on
co-production with autistic people
including autistic people in the research decisions about autism
without, leads to social disenfranchisement among autistic people - conventional research provides too few opportunities for genuine engagement with autistic people
research has found many autistic people feel that research fails to describe the nature of their experiences
4 levels of co-production (with autism as an example)
consultation = autistic individuals are asked for opinions, perspectives, ideas or concerns – no formal involvement e.g. focus groups, questionnaires
involvement = opportunity for autistic adults to taken an active role with more input on decision-making, but agenda largely defined and led by clinicians
participation = autistic individuals take part in defined activity, such as adding to an agenda or design of research
co-production = equal collaboration between clinicians and individuals, joint-decision making on goals, processes, and outcomes
why use co-production
effective in informing science/theory:
- could miss aspects of their lives - directs attention to them
effective in applying to daily lives:
- ethical reasons for involvement
- marginalised communities often not involved in making decision that effect them
- “nothing about us without us” - people should be able to contribute to research that could effect their lives
autistic people as experts by experience - provide insight, applied affects, challenges preconception
COVID lockdown and neurodevelopmental conditions
lockdown was necessary but had long reaching implications - mental wellbeing
ADD IMPACTS FROM POST LECTURE SLIDES
COVID lockdown and Down Syndrome
- adults >40 were 4x more likely to be hospitalised and 10x more likely to die from COVID
- challenges from lockdown/social distance
- reductions in disability programs that adults with DS normally rely on
- often not able to benefit fromtelehealthor virtual services to the same extent
- reduced activities important for mood & behaviour regulation and overall health including exercise and time spent outdoors - these activities are often fostered by disability programs
COVID-19 and Down Syndrome study (Hartley et al., 2022)
mood and behaviour consequences of daily-life changes and new stressors
study = September 2020 - February 2021, caregivers of 171 adults with Down syndrome (aged 22–66 years)
one-third (33%) of individuals were more irritable or easily angered, 52% were more anxious, and 41% were more sad/depressed/unhappy relative to pre-pandemic
majority of changes in mood and behaviour were of modest severity
NICE guidelines and COVID-19
- priorities for care if resources ran short
- those who need day-to-day living support were not prioritised on this scale - led to many people being issued a DNR (do not resuscitate)
- Mencap (voice of learning disability) made NICE update their guidance so that people with learning disabilities were not included on this scale - updated guidance
- NHS England quick response - but some people still have DNR and don’t know it
positives of lockdown on those with ADHD study
Bobo et al (2020)
method:
- 533 French parents of ADHD kids
- questionnaire - open-ended and closed questions (mixed methods)
results:
- 34.71% parents reported worsening of child’s behaviour
- 34.33% reported no noticeable changes
- 30.96% report overall improvement in child’s behaviour
negatives: social aspects, home schooling, general behaviour, sleep
positives: reduction in anxiety, improved self-esteem, reduced inattention and agitation, better appreciation of child’s difficulties
underdiagnosis of ASD in women
4:1 men : women with autism
2 theories for why:
- extreme male brain theory - sex hormones
- under-diagnosis of females with ASD
extreme male brain theory (Baron-Cohen, 2002)
sex differences in neuroanatomy, neural function, cognition, and behaviour in general population
people with ASC show an extreme of the typical male profile in terms of (low) empathy and (high) systemizing
foetal testosterone (FT) is known from animal research to play an organizing role in brain development
FT associated with individual differences in eye contact, vocabulary development, empathy, systemizing, attention to detail, and autistic traits in typically developing children
evidence for extreme male brain theory
largely based on questionnaire studies
Baron-Cohen developed 3 questionnaires for use on general population:
- autism spectrum quotient (AQ)
- empathising quotient (EQ)
- systemising questionnaire (SQ)
gender differences in SQ and EQ scores
neurotypical males get higher SQ scores than neurotypical females
neurotypical females get higher EQ scores than neurotypical males
AQ distribution and gender differences
AQ = 50 item questionnaire
scores on AQ are normally distributed in neurotypical and autistic populations (obv with different means etc)
average AQ score is higher for males than females - this has been used to support the Extreme Male Brain theory of autism
