I was diagnosed with Asperger's Syndrome when I was in high school. I know that Asperger's isn't a diagnosis anymore, but I don't want to tell people I have autism. Recently I heard about Pathological Demand Avoidance and think that I actually have that - not Asperger's. Can I get rediagnosed to have Pathological Demand Avoidance?
Avoiding Autism Label
Dear Avoiding Autism Label,
Many people, including mental health professionals, have been confused by the exit of the "Asperger's" label. As therapists at the Autism Society of Minnesota, we have met many new clients who have been told they no longer qualify for the diagnosis by professionals who are not understanding the criteria.
Pathological Demand Avoidance has been brought to my attention by a few clients. PDA is predominately being diagnosed in the United Kingdom and Ireland. Some seem to be considering it a type of autism while others, including the developers of an assessment tool called the Extreme Demand Avoidance Questionnaire, present it as a separate disorder that includes elements similar to autism and oppositional defiant disorder but with the specific ability to socially manipulate their circumstances (something most people on the spectrum don't do well).
Diagnostic criteria have not been determined and PDA has no ICD-10 code which means it cannot officially be diagnosed or treated. As a therapist, my approach would be to address the specific characteristics of PDA that you are seeing in yourself, and, further, why you would think it better to have this label as opposed to the label you currently have (Asperger's). Many people continue to use "Aspie" as part of the self-identity and it is still recognized in the community. A bigger challenge is getting more medical and mental health professionals to understand that people who present with characteristics of Asperger's DO have autism. It is, indeed, the same thing. A longer explanation with supporting research for this argument has been eloquently made by Steve Silberman in his book, NeuroTribes.
In the future, the psychology and medical community may start recognizing that there are different types of autism. Since it is such a broad spectrum, significant differences within the community are a given. However, the traits and barriers to success are consistent.
You have the power to self-identify in whichever way you feel most confident. I would encourage you to work with your family, friends, and natural supports to help you understand the advantages and disadvantages of the diagnostic labels so you can advocate for what you need - and don't need! If necessary, seek out a mental health therapist for further clarification of the new standards for an autism diagnosis.
Futhermore, the opportunity to educate more people (including other professionals) about what autism really is and what it's really like are available though Autistic Self Advocacy Network
(ASAN) as well as here at AuSM.
Self advocacy is a powerful way to come to a more positive relationship with your diagnosis.
I wish you all the best in finding an identity and label that help you get the support you need and that feel comfortable. But just remember that there is no shame in being diagnosed with autism.