'Sometimes labels need to exist': exploring how young adults with Asperger’s syndrome perceive its removal from the Diagnostic and Statistical Manual of Mental Disorders fifth edition

Points of Interest
• A researcher with a diagnosis of Asperger’s Syndrome interviewed nine people with this diagnosis to see what they thought of the recent changes to the Diagnostic and Statistical Manual of Mental Disorders-5. These changes mean that people won’t receive a diagnosis of Asperger’s but will probably receive a diagnosis of Autism Spectrum Disorder instead.
• The people interviewed were not happy with the changes and they felt that the labels “High-functioning Autism” or “ASD Level 1” would not really describe them personally. They thought that Asperger’s was different to Autism while still being part of the Autism family.
• Participants expressed some mixed feelings towards the Asperger’s label, but mostly they their diagnosis as positive.
• Participants identified strongly with a community of people with Asperger’s (sometimes called the “Aspie” community) and they reported that this was very helpful to them. They worried that this identity would die out and people would not understand their experience without this specific label.
• They expressed concern that the new diagnostic criteria would mean that people with similar profiles to them would not receive diagnosis in the future. This might mean that they would miss out on the support from both professionals and peers that they had found so valuable in their own lives.