With the support of the Lifelong Learning
Programme of the European Union
Autism in Pink
Women with autism volunteered to take part in the project in each country: UK, Lithuania, Spain and Portugal. 10-12 women per country with an average age of 26 participated (see Appendix 2 of Assessment of Competencies and Identification of Needs).
Compared with the project participants with autism from the other countries, the data on the UK group of participants shows that on average they are what is commonly known as 'higher functioning'; their autism is more hidden and on the surface they appear much more like women who are not on the autism spectrum.
Nine out of 12 of the UK group received their diagnosis as adults of 18 or over, and the average age of diagnosis of the group is 22. This is compared with Portugal and Lithuania where, from the data that we have, all of the participant women were diagnosed as children, mostly at an age well under 10 years old. Three out of 10 of the Spanish group received their diagnosis as adults, compared with seven who were diagnosed under the age of 10.
Further exploration of the countries and the way in which participants were recruited suggests that the difference could be for two main reasons:
Recruitment of participants in Spain, Portugal and Lithuania took place within autism specific organisations. In the UK, advertising for participant women with autism took place across the National Autistic Society, but also on general social media sites. This meant that the majority of the participants were women who responded directly to the advertisements themselves, rather than women who attend a service and were asked if they wanted to participate in the research.
In the UK, due to pioneering research on Aperger syndrome by Lorna Wing and Judith Gould, it has perhaps been longer recognised that there are people on the autism spectrum who do not have learning disabilities. Diagnosis has therefore moved from just diagnosing people who are showing autism-related characteristics more obviously at an early age, to diagnosing people whose autism-related characteristics are much more subtle and less easily noticed, or much less easily associated with the autism spectrum. The other countries are following this path, and beginning to recognise more people with subtler characteristics as well, but they are perhaps less far down this road.
In the UK, again led by Judith Gould, it is beginning to be more recognised that traditional diagnostic questions might be missing many women with autism.There are now a few diagnosticians (and those numbers are growing) who have a special interest in women.
Despite this, many of the women in the UK group had received their diagnosis as a result of issues which were first thought to be mental health-related. Many have been through quite a struggle to finally get the correct diagnosis.
It should not be assumed that 'higher functioning' women with autism are less frequent in the EU partner countries outside of the UK, especially Portugal and Lithuania. Far more work would need to be done on cultural factors and diagnostic trends and systems.
Having participants for the project that vary in ability should not be thought of as a difficulty of the project; it is a reflection of the reality of autism, and that it is a spectrum condition.