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Co-Production
Conducting research in partnership with the population being studied, especially autistic individuals or those with other neurodevelopmental conditions
Issues with traditional research
Often excludes ND voices, focusing on parents, teachers, clinicians
Misses lived experience, contributes to "social disenfranchisement"
Benefits of co-production
Improves relevance, ethics, accuracy of findings.
Embodies the disability rights mantra: "Nothing about us, without us."
Recognises autistic people as experts by experience.
Encouraged by researchers like Thompson-Hodgetts (2022), who advocate for reflective, collaborative research practices.
Impact of COVID - Down Syndrome
Adults aged 40+ with DS had:
4× higher hospitalisation risk.
10× higher mortality rate from COVID-19 (Clift et al., 2020).
Suffered from reduced access to essential support services and physical activity, contributing to worsened mood and behaviour (Hartley et al., 2022).
Impact of COVID - ADHD
Mixed experience
-ve: Increased anxiety, aggression, poor sleep, and oppositional behaviour
+ve: Reduced school pressure, calmer home environment, better focus at home for some children.
What % of parents reported improvements in their (ADHD) child's behaviour during lockdown?
~30%
COVID Ethical Concerns
Early NICE guidance during the pandemic deprioritised care for people needing daily support (e.g., with learning disabilities), leading to inappropriate Do Not Resuscitate (DNR) orders.
Raised significant issues about equity in healthcare.
Twin Studies - ASC
Higher concordance in monozygotic twins (77%) vs. dizygotic twins (31%) (Hallmayer et al., 2011).
Broader Autism Phenotype
First-degree relatives of autistic individuals may show mild traits linked to ASC (Losh et al., 2008).
Sotos Syndrome - ASC
Caused by NSD1 gene deletion; 83% scored above clinical threshold for ASC traits (Lane et al., 2017).
Genetic contribution to Autism
Genetic factors strongly contribute to autism risk, though no single gene explains all cases.
Environmental Epidemiology
looks at population-level data to infer links between environmental exposures and conditions like ASC.
Environmental Epidemiology Challenges
Correlation ≠ Causation
Measurement difficulties and variability across studies complicate findings.
Example of bad science
Wakefield et al. (1998) falsely linked MMR vaccine to autism — now thoroughly discredited (Hviid et al., 2019).
Meta Analyses
Help summarise data across studies but can be influenced by study quality, publication bias, and inconsistent definitions.
Meta-Analyses Example
Lam et al. (2016) found a small but significant association between air pollution (particulate matter) and autism.
Gene-environment interaction
Best explanation for Autism risk
Volk et al. (2014) studied
Children with altered MET gene expression (linked to neurodevelopment).
Their exposure to air pollution.
Volk et al. (2014) found
Found that combined gene + environmental risk led to greater likelihood of ASC than either factor alone.
Takeaway: Neither genes nor environment work in isolation — it's their interaction that shapes developmental outcomes.