Durkin began with an overview of recent trends in autism epidemiological research, including the increases in autism numbers, the make-up of the autism population, and the variation in those numbers across countries and socio-economic status. She then moved on to consider more political issues, including the impact of copyright restrictions on access to diagnostic tools and the need to broaden the focus of epidemiological research beyond considering only autistic impairments.
I understand that the slides (and possibly the video) of the talk will be made available. In the meantime, here are the (lightly edited) notes I made during the talk. Be aware that they may not be a completely accurate record. If you notice any inaccuracies or major omissions, please comment. Also, the notes don't do the talk much justice, so it's well worth looking out for it when it becomes available.
- Elsabbagh et al in Autism Research provide a valuable review of autism prevalence by year and country
- Pre 2000 – 1/3 of children with ASD had IQs in normal range. In studies since 2000 the rate is around 2/3
- Autism is the most expensive form of special education with an estimated cost of $11000 per year – double that of other special education
- Lifetime costs are huge. Parents should be referred for financial counselling at diagnosis
- Autism rates differ by socio-economic status (SES)
- Wing 1980 noted that educated parents are more likely to obtain an autism diagnosis for their child
- Autism rates are significantly higher in higher SES groups – the opposite of other disabilities where rates are higher in less well-to-do social groups
- The SES effect is present in all races (Durkin et al 2010 PLoS ONE)
- If we assume this is due to differences in ascertainment then it follows that (a) there are disparities in access to service and (b) many kids with autism are being missed
- Disparities may also be due in part to clinicians’ bias.
- Clinicians are more likely to assign autism diagnoses when given descriptions of children from high SES background than when given description of child showing same features but from low SES background (Cuccuro et al 96 JADD)
- Latino kids are half as likely to receive ABA, due to later diagnosis (Magana)
- Despite improving identification of autistic kids, there is no evidence of the prevalence disparity decreasing
- SES gradient is not found in Sweden. In fact it trends in the opposite direction (ie like other disorders) (Rai)
- Media images of autism are still almost exclusively of white boys
- Most assessments are copyrighted, preventing translations to other languages
- To avoid copyright restrictions, clinicians currently have to reinvent the wheel to develop new diagnostic tools
- The R-statistics package could be a useful model for how an open source approach to autism diagnosis might work
- DisabilityMeasures.org provides a list of free and open disability measurement tools
- The International Classification of Functioning Disability and Health distinguishes between (a) impairment, (b) activity limitations, and (c) restrictions
- Epidemiology currently looks only at impairment
- But there may be a limited amount that can be done regarding impairment so it’s important to look at activity limitations and restrictions
- Lessons can be drawn from physical and sensory disabilities where enhancing participation of people with disabilities indirectly improves their social participation
- The World Health Organization coordinated an international study on the course and outcome of schizophrenia
- “Extraordinary finding that subjects in developing world were generally better off than their counterparts in developed world” This despite the frequency of schizophrenia being the same
- This suggests possibility that might find better models for dealing with schizophrenia in developing countries
- Should be open to possibility that this might also be true of autism
- UN Conventions on rights of the child and rights of persons with disabilities provides an important framework, seeing people with disabilities less as objects of charity (and more as valued members of society)
- Future of autism – shaped by convergence of ideas (open collaboration, emphasis on participation in society) and new technologies
