Is formal diagnosis important? Many of us feel the need for the validation we hope formal diagnosis will provide... but what does it actually mean?
To be, or not to be - an Aspie... The quandary of diagnosis.
To obtain a medical diagnosis you must display distress and /or dysfunction.
To identify as Aspie, ( a certain kind of mind based on identifiable neurobiology) you need to score highly on the two scales developed by the National Autistic Research Centre (https://www.autismresearchcentre.com/arc_tests). An Aspie will also identify with many of the characteristics of Asperger's in the "Relationships" booklet that can be seen here.
The benefit of discovering that you have an Aspie kind of mind, is a "now it all makes sense" experience; knowing what to ask for from friends and family and, now, being motivated to take on board the tools to be able to navigate a social world defined by people with a different kind of mind to yours.
The benefits of adding a medical diagnosis can be: the release of funding and support (in schools and support groups for adults), the protection of employment and health and safety legislation (at least in theory), and a change in attitude from health professionals.
However, there are problems:
The process is quite long and can be distressing. People who score very high on the scales and struggle to hold on to jobs and relationships, (but are compensating and functioning because of years of trying to not appear different) are very disappointed and distressed when they are told they do not qualify for the medical diagnosis - they are functioning too well.
DSM4 and ICD10 give a differential diagnosis for Childhood Autism (child in a bubble, major developmental delays, cognitive deficit) and Asperger's ( no developmental delay, average or above average cognitive capacity) - which have totally different personality structures.
In DSM5 those two separate presentations are conflated to create an 'Autistic Spectrum diagnosis'. Temple Grandin has pointed out that about 40% of people who were given a diagnosis under DSM4 would not get one now, under DSM5.
In effect, Aspergers has been defined out of existence, but GPs use ICD10, and Aspies recognise themselves in the ICD10 diagnosis.
So, it is possible that someone can identify as 'Aspie' and not be diagnosed as Asperger's. Having said that, a lack of a formal diagnosis should be no barrier to learning about one's mind and how better to navigate the world around us. A medical diagnosis does not define Asperger's so much as the detrimental effects (e.g. depression and anxiety) of living in a majority NT society, which make coping with everyday life more difficult.