Social Communication Disorder (Mis)diagnosis

Post Reply New Topic

Last Friday, I received a phone call from the psychologist who did my ASD diagnosis. It is her immediate opinion, based on ADOS scores, that I do not qualify for an ASD diagnosis because I was below threshold for repetitive behaviors. Instead, she wants to give me an official diagnosis of Social Communication Disorder (SCD) because I do fit the social communication criteria for ASD.

This call was rather shocking to me because I had assumed my repetitive behaviors (stimming via finger flicking, clearly restrictive and niche interests, sensory processing issues which are for some reason lumped into that criteria in the DSM-V) were going to be more obvious in questioning and testing than the social problems since I've been masking them to the best of my ability for 23 years.

I told her that I was confused by these results because, to some extent or another (which may be subthreshold), I identify with all four criteria of the repetitive behaviors section of the ASD diagnosis. She said my file will need to be updated and I may need to go back for further evaluation. I'm still waiting to pick up my official results which seem to have been delayed, possibly because she's needing to go back to the notes from our first session where I described the repetitive behaviors in great detail. She had mentioned possible SCD in our first meeting, but I immediately wrote it off because I thought the repetitive behaviors would prove to be obvious. I'm not quite sure how the ADOS can test for more subtle stims (or those that can be controlled) and hyperfixations.

Has anyone else had this experience? I will update if the diagnosis changes.

EDIT: The funny thing about this result is that it's convinced me that I am not faking my symptoms and that I am on the spectrum. My fear was that I was simply eclectic and had unusual interests and patterns of behavior, but I didn't have any real social communication problems and did have social anxiety. This was my regular psychiatrist's opinion of my condition (ADHD, social anxiety, and a sensory processing disorder). Now that I know that the social communication problems are not just "in my head" because of anxiety but something that is noticeable by someone trained in detecting abnormal social behavior, the impostor syndrome is starting to leave my head. I don't think I'm claiming ASD "for attention" anymore. I think this actually describes a life of previously unexplained differences.

This hits. That's sort of similar to how my results were. Although, I think that my psychologist was probably a bit closer and is involving me in whether or not I want the diagnosis added to my records. But, that may be just because he thinks it's a poorly understood personality disorder, and the one that yours is proposing may be easier to diagnose.

Your next step would probably be to set up an appointment with an occupational therapist in order to get a sensory profile completed. I may be wrong, but I thought the major difference between ASD and SCD is that sensory hyper/hyposensitivities. If you've got sensory issues that are sufficient that you think they point towards ASD, you'd likely want that whether you think the ASD diagnosis is important to your personal medical treatment versus the one you're getting.

You may also want to more thoroughly document whatever stimming you're doing.

Or, if the SCD diagnosis covers you for whatever help you need, just accept the diagnosis and adjust the way you think about yourself. That is also an option, although, I'm guessing that the SCD doesn't cover you for some of the stuff that seems to be a struggle for you.

Update: My file was updated after the last call with the psychologist. I am officially autistic! Time to update my WP account.