What do autistic people argue about autism research?
- advocate 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
What is co-production?
- no dictionary definition but is the process of conducting research in partnership with the population you are focusing on
What 3 elements of co-production should be considered?
- consultation
- involvement
- participation
- co-production
Why is it important to co-produce?
- effective in informing science/theory
- effective in applying to daily lives
(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 - ethical reasons- marginalized communities have a right to be involved as it affects them.
What did Thompson-Hodgetts research about using autistic people in autism research?
- Open letter as a non-autistic autism reader
- research demonstrates positive effects
- better insights, more involved, can have applied affects (instead of being disconnected)
- challenges our preconceptions
Is co-production increasing?
- although co-production is increasingly popular in autism research, this is not the case across all conditions
What are some ways COVID-19 impacted Down Syndrome?
- adults over the age of 40 were 4x more likely to be hospitalised 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 led to reduction in disability programmes that adults with DS normally rely on
- adults with DS are not able to benefit from virtual services as much as their peers
- pandemic reduced activities important for mood and behaviour regulation
What was Hartleys research on down syndrome and lockdown?
- between september 2020 and Feb 2021,, caregivers of 171 adults with DS (22-66y)
- 33% were more irritable, 52% more anxious, 41% more sad/depressed/unhappy
- majority of changes in mood and behaviour were of modest severity
What were the findings of online surveys measuring the impact of COVID-19 on young people with DS? (done by caregivers) (NEGATIVE IMPLICATIONS)
*67% of parents reported concerns that their child’s communication,
learning, and development had deteriorated.
*speech sounds (32.6%)
*communication (30.4%),
*attention (28.3%)
*Deterioration in social skills (43.5%)
*Increased reliance/dependence on adults and reduced motivation
were commonly reported.
*Widespread reduction or stoppage of external support services.
*Speech and Language Therapy (SLT) provision was stopped for 63% of recipients.
*Parents reported difficulties with home-schooling, often due to
school work not being differentiated for their child’s needs.
What were the findings of online surveys measuring the impact of COVID-19 on young people with DS? (done by caregivers) (POSITIVE IMPLICATIONS)
- improved life skills and enjoying more family time
- some children were ‘much happier’ without the stress of having to conform in a school environment
implications for future support- strong need for additional and individualised support for families
What was Bobo et al (2020) study on COVID and ADHD?
- 533 French parents of ADHD children & adolescents
- questionnaire open-ended and closed questions (mixed methods)
- 34.71% of parents report a worsening of their childs behaviour, 34.33% report no noticeable changes and 30.96% note an overall improvement in their child’s behaviour
What is meant by ‘bad science’ and what was said about the causes of autism related to this?
- in 1998, paper published that claimed there was a link between the MMR vaccine and autism
- this was based on a small sample of 12 children
- lead to media frenzy, 1000s now not getting vaccinated and more contracting measles
What happened in 2019, disputing the MMR and autism link?
- original paper was later retracted as there was evidence that parts of the work were fraudulent
- many follow up studies have since found no evidence for a link between MMR vaccine and autism
- in 2019, a paper found no evidence for a link between MMR and autism, in a population sample of over 650,000 children
What has Trump said recently about the causes of autism and what is the evidence against this?
- Trump argued Tylenol (paracetamol) was causing autism
However… - infection, fever, migrane and autoimmune conditions all associated with autism and you would take tylenol for these!
What was Ahlqvist et al experiment on tylenol and autism?
- used a sibling control method. Full siblings- one sibling the mother used tylenol during pregnancy and the other sibling the mother didn’t
- population based study, large scale, Sweden
7.4% exposed to paracetamol during pregnancy
Results: - without sibling controls: a marginally increased risk of autism
- with sibling controls: no increased risk whatsoever
- concluded previous findings of a link between Tylenol anf autism were most likely due to confounding factors
What do we mean by environmental epidemiology?
observation of human populations to infer the environmental causes of a condition or disease
Why is it difficult to explore relationships between the environment and ASC?
- tricky to identify
- analysing environmental influences = correlations
- correlation isn’t causation
What are Hill’s criteria of environmental epidemiology?
- Strength- of relationship between variables
- Analogy- any other similar relationships?
- Specificity- effect is only found in relation to the cause OR there is only one effect associated with the cause
- Temporality- effect has to happen after the cause
- Experiment- use well designed and conducted observational studies
- Plausibility- how plausible is this explanation?
- Consistency- similar findings in different contexts?
- Biological gradient- greater exposure= greater incidence
- Coherence- do these findings match up with lab studies or well established relationships?
What are the steps we can take to try and establish causality?
- environmental research is observational- not fully controlled
- extraneous variables are also recorded
- the results of one study are easily challenged
- how can we be confident in the results of our study
- meta analyses
- take numerous independent studies and combine their relationship remains
What was an example of a study on folic acis that was easily challenged? (causation not established)
Suren et al (2013)- 85,176 children- folic acid during pregnancy reduced the risk of autism
Virk et al (2016)- 38,035 mothers- no evidence that folic acid reduces the risk of autism
What is an example of meta analysis on air pollution?
- looked under search terms- multiple wordsassociated with air pollution and autism
- initial set of papers are screened to identify relevant work that fits the inclusion criteria
- need to understand odds ratios
- combined data shows a small but significant association between particulate matter and ASC
How can you interpret odds ratio?
OR= 1 exposure to the cause (cigarettes) does not lead to an effect (cigarette smoking isn’t linked to lung cancer)
OR<1 greater exposure to the cause is associated with less of an effect
OR>1 greater exposure to the cause is associated with a larger effect
What did odds ratios show about the risk of ASC from MMR?
ALL datasets showed odds ratio <1 ie. no association between MMR and ASC
What is the evidence for genetic involvement in ASC?
- higher co-occurence of ASC in mz twins than dz twins
- first degree relatives of sutistic people have an increase in behavioural or cognitive features associated with ASC-( the broader autism phenotype)
- ASC often co-occurs with genetic conditions (eg. 16p11.2 and Sotos syndrome)
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Introduction to atypical development30
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Identifying atypical development17
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Diagnosing atypical development25
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Therapies and interventions14
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Gender identity and sexuality in neurodevelopmental conditions25
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Gender and Diagnosis27
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Current issues30
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Adulthood and neurodevelopment33
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Sensation in autism29
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Lifespan perspective and socioemotional processing in older age34
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Cognitive ageing28
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Ageing and physiology29
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Applied themes in ageing35
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Prelinguistic and lexical development32
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Using sentences and atypical language development29
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Individual differences in language development, socioeconomic circumstances and early language interventions11
