current issues

Question 1

how has past research worked?

Answer 1

• 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

Question 2

issues with past research

Answer 2

• 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

Question 3

a problem in autistic research

Answer 3

• 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

Question 4

what is co-production?

Answer 4

it is the process of conducting research in partnership with the population you are focusing on

Question 5

what are the levels of co-production? (lowest to highest)

Answer 5

1. consultation:
   –> autistic Ps asked for opinions/ideas but no formal involvement
2. involvement
   –> autistic Ps have the opportunity to take an active role and and have more input in decision making (still heavily led by clinician)
3. participation
   –> autistic Ps take part in defined activities and have some freedom in agenda / research design
4. co-production
   –> equal collaboration between clinicians and autistic Ps (including joint decision making in the process)

Question 6

why use co-production?

Answer 6

• 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

Question 7

what does ‘experts by experience’ mean?

Answer 7

• research demonstrates positive effects
• better insights
• more involved
• can have applied affects (instead of being disconnected)
• challenges our preconceptions

Question 8

importance of co-production

Answer 8

particularly important in light of research focusing on current real world events

Question 9

is co-production used broadly?

Answer 9

although co-production is increasingly popular in autism research, this is not the case across all conditions

Question 10

impact of lockdown on neurodevelopmental conditions

Answer 10

• lockdown was necessary, but not without long reaching implications
• it saved lives, but also impacted people’s mental well-being

Question 11

Covid-19 and Down Syndrome

Answer 11

• 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

Question 12

Covid-19 and Down Syndrome (Hartley et al., 2022)

Answer 12

• 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

Question 13

NICE guidelines and Covid-19

Answer 13

• 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

Question 14

Covid-19 and ADHD (Bobo et al., 2020)

Answer 14

• 533 French parents of ADHD children & adolescents (m age=10.5, 58 girls)
• questionnaire with open-ended and closed questions (mixed methods)

Question 15

Covid-19 and ADHD (Bobo et al., 2020) - qualitative results

Answer 15

• 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

Question 16

Covid-19 and ADHD (Bobo et al., 2020) - quantitative results

Answer 16

• 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

Question 17

Gender and Autism

Answer 17

• 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

Question 18

proposed theories for gender differences in autism

Answer 18

1. Extreme Male Brain Theory / Sex hormones
2. under-diagnosis of females with ASC

Question 19

Extreme Male Brain Theory

Answer 19

• 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

Question 20

what is most of the evidence for the extreme male brain theory based on?

Answer 20

• questionnaire studies
• Baron-Cohen has developed 3 different questionnaires used in the general population

Question 21

3 questionnaires developed and used by Baron-Cohen

Answer 21

1. The Autism Spectrum Quotient (AQ)
2. The Empathising Quotient (EQ)
3. The Systemising Questionnaire (SQ)

Question 22

gender differences in SQ and EQ scores

Answer 22

• 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

Question 23

the autism spectrum quotient (AQ)

Answer 23

• 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

Question 24

challenges to the Extreme Male Brain Theory

Answer 24

• 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

Question 25

Loomes et al (2017) - meta analysis on sex differences

Answer 25

• 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

Question 26

conclusions of Loomes et al (2017)

Answer 26

• 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

Question 27

future directions based off of Loomes et al (2017)

Answer 27

• 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?

Question 28

ADHD in girls

Answer 28

• 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)

Question 29

what is ADHD highly comorbid with?

Answer 29

• anxiety and depression
• does this mask the underlying ADHD?

Question 30

early ADHD studies

Answer 30

• 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

Question 31

what are the 3 subtypes of ADHD?

Answer 31

1. inattentive
2. hyperactive/impulsive
3. combined

Question 32

who is more likely to have each sub type of ADHD?

Answer 32

• 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

Question 33

what is social camouflaging?

Answer 33

• 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

Question 34

who scores higher in camouflage scores?

Answer 34

• camouflage scores are higher in autistic women

Question 35

co-production summary

Answer 35

• 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

Question 36

Covid-19 summary

Answer 36

• 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

Question 37

gender summary

Answer 37

• 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