1
Q
how has past research worked?
A
- historically, research has involved researchers forming hypotheses and then seeking out certain populations to test these hypotheses
- they then analyse their data and publish their conclusions relating to that population
2
Q
issues with past research
A
- now recognised that making assumptions, testing assumptions and publishing conclusions about a certain population WITHOUT input from that population is not good practice
- people with neurodevelopmental conditions are often left out of the very research which is about them
- often, research focusses on asking family members, educators and clinicians about the individual
–> alot of these individuals could answer questions too
3
Q
a problem in autistic research
A
- autistic advocates argue that conventional research provides too few opportunities for genuine engagement with autistic people
–> contributing to “social disenfranchisement” among autistic people - recent research demonstrates that world wide autistic people, their families, educators, and clinicians feel that autism research generally fails to describe the nature of autistic life experiences
4
Q
what is co-production?
A
it is the process of conducting research in partnership with the population you are focusing on
5
Q
what are the levels of co-production? (lowest to highest)
A
- consultation:
–> autistic Ps asked for opinions/ideas but no formal involvement - involvement
–> autistic Ps have the opportunity to take an active role and and have more input in decision making (still heavily led by clinician) - participation
–> autistic Ps take part in defined activities and have some freedom in agenda / research design - co-production
–> equal collaboration between clinicians and autistic Ps (including joint decision making in the process)
6
Q
why use co-production?
A
- might get more effective research if we actively involve community members who can direct attention to aspects of experience that are routinely missed without such input
–> informs science/theory
–> applied to everyday life - clearethicalreasons for involvement in research
–> marginalized communities are often not involved in making decisions that affect them - the disability rights mantra:
–> “nothing about us, without us”
–> people should be able to contribute to research that could in some way affect their lives
7
Q
what does ‘experts by experience’ mean?
A
- research demonstrates positive effects
- better insights
- more involved
- can have applied affects (instead of being disconnected)
- challenges our preconceptions
8
Q
importance of co-production
A
particularly important in light of research focusing on current real world events
9
Q
is co-production used broadly?
A
although co-production is increasingly popular in autism research, this is not the case across all conditions
10
Q
impact of lockdown on neurodevelopmental conditions
A
- lockdown was necessary, but not without long reaching implications
- it saved lives, but also impacted people’s mental well-being
11
Q
Covid-19 and Down Syndrome
A
- adults over the age of 40 years were 4x more likely to be hospitalized and 10x more likely to die from COVID-19
- adults with DS faced unique challenges from societal efforts to curb the spread of COVID-19
- quarantining and social distancing likely led to reductions in disability programs that adults with DS normally rely on
- adults with DS are often not able to benefit fromtelehealthor virtual services to the same extent as their non-DS peers
- the pandemic may also have reduced activities important for mood & behavior regulation and overall health including exercise and time spent outdoors
–> these activities are often fostered by disability programs
12
Q
Covid-19 and Down Syndrome (Hartley et al., 2022)
A
- between September 2020 and February 2021, caregivers of 171 adults with Down syndrome (aged 22–66 years)
- 33% of individuals were more irritable or easily angered
- 52% were more anxious
- 41% were more sad/depressed/unhappy relative to pre-pandemic
- the majority of changes in mood and behavior were of modest severity
13
Q
NICE guidelines and Covid-19
A
- during the pandemic NICE published a scale setting out who to prioritise for care if resources ran short
- those who need support for day-to-day living (e.g. people with learning disabilities) were not prioritised on this scale
–> led to many people being issued a do-not-resuscitate (DNR) - Mencap contacted NICE who agreed the scale shouldn’t apply to people with learning disabilities & updated their guidance
- NHS England responded quickly, but still some people who have a DNR who don’t know
14
Q
Covid-19 and ADHD (Bobo et al., 2020)
A
- 533 French parents of ADHD children & adolescents (m age=10.5, 58 girls)
- questionnaire with open-ended and closed questions (mixed methods)
15
Q
Covid-19 and ADHD (Bobo et al., 2020) - qualitative results
A
- kids suffered socially
- suffered with their education
- can be emotional and violent
- lost routine
–> including sleeping patterns - some found the flexibility to benefit them
–> less rigid/busy schedules
–> less school pressure and a more suitable pace - some found that more time spent with their child changed their perception of their child
16
Q
Covid-19 and ADHD (Bobo et al., 2020) - quantitative results
A
- 34.71% of parents report a worsening of their child’s behaviour
- 34.33% report no noticeable changes
- 30.96% note an overall improvement in their child’s behaviour
17
Q
Gender and Autism
A
- the male to female ratio of ASC is 4 to 1
–> for every female with ASC, there are 4 males with ASC - it is not known why this is the case
18
Q
proposed theories for gender differences in autism
A
- Extreme Male Brain Theory / Sex hormones
- under-diagnosis of females with ASC
19
Q
Extreme Male Brain Theory
A
- there are sex differences in neuroanatomy, neural function, cognition, and behaviour in the 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
20
Q
what is most of the evidence for the extreme male brain theory based on?
A
- questionnaire studies
- Baron-Cohen has developed 3 different questionnaires used in the general population
21
Q
3 questionnaires developed and used by Baron-Cohen
A
- The Autism Spectrum Quotient (AQ)
- The Empathising Quotient (EQ)
- The Systemising Questionnaire (SQ)
22
Q
gender differences in SQ and EQ scores
A
- neurotypical males obtain higher scores on the systematising quotient (SQ) than neurotypical females
- neurotypical females obtain higher scores on the empathizing quotient (EQ) than neurotypical males
23
Q
the autism spectrum quotient (AQ)
A
- scores on the AQ are normally distributed, both in the neurotypical (non-autistic) population and in the autistic population
- males obtain higher AQ scores than females
–> the fact that the average AQ score for males is higher than the average AQ score for females has been used to support the Extreme Male Brain theory of autism
24
Q
challenges to the Extreme Male Brain Theory
A
- the claim that autistic people are not empathic has been disputed
–> argument that autistic people can be over sympathetic - some autistic women feel that the extreme male brain theory dismisses the fact that women can be, and are, autistic
25
Loomes et al (2017) - meta analysis on sex differences
- 54 papers that reported male to female ratio in ASC
- overall male to female ratio = 4.2 to 1
- male to female ratio high quality studies was 3.32 to 1
- male to female ratio in studies that only included participants with an existing diagnosis of ASC was 4.56 to 1
- male to female ratio in studies that screened the population to identify participants whether or not they already had a diagnosis of ASC was 3.25 to 1
26
conclusions of Loomes et al (2017)
- the male to female ratio in autism may actually be lower than currently thought
--> e.g. 3 to 1 rather than 4 to 1
- suggests that autistic females are at greater risk of having their ASC overlooked, misdiagnosed or identified late
27
future directions based off of Loomes et al (2017)
- social camouflage / masking of autism symptoms:
--> are autistic females more able to hide their autism symptoms?
- is ASC in females expressed differently in females such that it isn’t so easily recognised?
- do professionals hold stereotypes about ASC being a male condition, thus reducing their sensitivity to ASC in females?
28
ADHD in girls
- estimated that half to three-quarters of all women with ADHD are undiagnosed
- boys are more likely to be given an ADHD diagnosis (13.2%) than girls
- girls are also diagnosed, on average, 5 years later than boys (boys at age 7, girls at age 12)
29
what is ADHD highly comorbid with?
- anxiety and depression
- does this mask the underlying ADHD?
30
early ADHD studies
- early studies in the 1970s were primarily of boys (Yagoda, 2013)
--> a picture of behaviours that are more applicable to boys than girls
- first studies with girls was in the1990s
- first longitudinal study in 2002
31
what are the 3 subtypes of ADHD?
1. inattentive
2. hyperactive/impulsive
3. combined
32
who is more likely to have each sub type of ADHD?
- girls = more likely to be inattentive (related to less disruptive behaviour)
- boys = more likely to be hyperactive/impulsive or combined
- most girls with a clinical diagnosis = hyperactive/impulsive
- hyperactive/impulsive is easier to spot and often given more attention
33
what is social camouflaging?
- hiding / masking behaviours order to fit in
- many autistic people report that they spend a lot of time and energy trying to learn strategies that enables them to “less autistic”.
- recent data suggest that females may engage in social camouflaging more than males
--> this may contribute to under diagnosis of ASC in women
- research suggests women with ADHD also ‘mask’ and that this may lead to under diagnosis
34
who scores higher in camouflage scores?
- camouflage scores are higher in autistic women
35
co-production summary
- we need to involve those with neurodevelopmental conditions in decision making and research that concerns their population
- experts by experience
- different levels of co-production
36
Covid-19 summary
- the pandemic had a range of implications for individuals with neurodevelopmental conditions
- implications could vary depending on each condition
- research is still ongoing to understand the long term affects of the pandemic
37
gender summary
- more males are diagnosed with ASC and ADHD than females
- a very new research area, therefore is relatively little evidence available to help unravel these questions
--> but plenty of work for future scientists in this area to do
L2 Developmental S2
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