Abstract
The work described in this chapter shows that it is possible to study autism among the adult population using similar methods to those used to study other mental disorders. It is vital that others undertake similar work elsewhere. There is no previous literature with which to compare our findings. For many the most surprising and concerning finding is that there are so many adults with autism in the community without any recognition or diagnosis, even in a country like England with health care that is free when needed for everyone.
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Notes
- 1.
In this chapter the terms “autism” and “autism spectrum disorder” (or ASD) are used interchangeably—no difference in meaning is intended. But these labels do matter to people individually; for example, some prefer the term autism spectrum conditions (ASCs), disliking the word “disorder.” In epidemiology very precise definitions of terms are used as we shall see later in this chapter.
- 2.
In earlier surveys in children, lower rates were reported, which was interpreted by some to mean that rates were now on the increase: the median rate for surveys published between 1966 and 1991 was 4.4 cases per 10,000 population; and for surveys published between 1992 and 2001 it was 12.7 (Fombonne, 2005). For now we will set aside this controversial question but we will get back to it when we discuss later in this chapter our findings on rates in adults across the full lifespan into old age.
- 3.
In reality you would have to ask the examiner to consider not just records that look positive but some records (chosen at random) that look negative, in order to get a balanced—or an unbiased—sample.
- 4.
Later but soon enough to allow us to combine information from both interviews into one survey time period but with enough delay to give respondents a bit of a break!
- 5.
This list includes adults in temporary accommodation classed as “homeless“ but not the very small number “living rough,” which we did study in an earlier survey (Gill, Meltzer, Hinds, Petticrew, & Office for National Statistics Social Survey Division, 1996) that did not include an autism assessment.
- 6.
The range for this estimate, based on a 95 % confidence interval, is between 0.3 and 1.9 % (Brugha, Cooper, et al., 2012).
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Acknowledgements
Howard Meltzer (deceased), Jane Smith, study clinicians.
Funders: Department of Health, London via the NHS Information Centre, Leeds, UK.
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Brugha, T.S., Tyrer, F., Scott, F., Bankart, M.J., Cooper, S.A., McManus, S. (2014). The Epidemiology of Autism Spectrum Disorders in Adulthood. In: Volkmar, F., Reichow, B., McPartland, J. (eds) Adolescents and Adults with Autism Spectrum Disorders. Springer, New York, NY. https://doi.org/10.1007/978-1-4939-0506-5_15
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