Autism Diagnosis and Rediagnosis: Do Labels Matter?

Earlier today, I saw a blog post about adjusting to a late autism diagnosis. The author didn’t receive her diagnosis till her mature years, while I was 20 when first diagnosed as autistic. Still, I could relate to some of the things she discusses.

Particularly, I related to the fact that diagnosis changed my perspective in quite a radical way. I was no longer just a bad, difficult person. I was autistic. Always had been.

As regular readers of my blog might know, I have had multiple autism assessments since my first diagnosis in 2007. The reason for this is complicated and mostly related to the fact that professionals kept questioning my diagnosis and wanting further testing. At one point, the records of my most extensive assessment disappeared due to a change of electronic record keeping systems and this led to my then psychologist jumping at the opportunity and removing my diagnosis altogether.

Most autism support groups online are open to self-diagnosed individuals. The main one I was part of at the time, however, I found out, was not. I was heavily criticized and distrusted by the other members after I’d lost my diagnosis. They thought my psychologist had finally unmasked me as someone with a personality disorder rather than autism.

Of course, I also needed an autism diagnosis in order to get the right support. With just borderline and dependent personality disorder on my file, I would be treated much differently by the mental health agency than with autism as my diagnosis. I wouldn’t be able to get support from the intellectual disability services agency either. Thankfully, I got my autism diagnosis back.

Interestingly, the psychologist who removed my autism diagnosis, always said that diagnoses didn’t matter, yet she was the one constantly throwing around new diagnostic labels at me. In a sense, an official diagnosis doesn’t matter, in that self-diagnosis is valid too, at least outside of the need for services. For instance, I self-identify with a dissociative disorder even though I haven’t had this official diagnosis in over eight years. However, to say that labels don’t matter and that all that matters are the symptoms, as she said, is quite frankly wrong. Especially in the context of the need for services.

After all, I am the same person with the same symptoms whether I am diagnosed as autistic or as having borderline and dependent personality disorder. The treatment approach is quite different though. With autism, I need structure and a fair amount of support. With BPD and DPD, I mostly need to be taught to self-regulate by being made to take responsibility. Of course, in an ideal society, services aren’t rigidly based on someone’s diagnosis, but in our current healthcare system, they are. Because of this, I am so glad I currently have a well-established autism diagnosis and that my current support team at least don’t question it.

9 thoughts on “Autism Diagnosis and Rediagnosis: Do Labels Matter?

    1. Yes, funding is quite different based on your diagnosis. Here in the Netherlands, mental health services at least up till this year (I think they’re changing things around next year), is based on diagnosis-treatment combinations, where your diagnosis dictates what type of treatment and how much you get. I also wouldn’t possibly have gotten into long-term care with a personality disorder diagnosis, even though my long-term care funding is primarily based on blindness not autism.

      Liked by 1 person

    1. Thanks. The care staff obviously don’t really have the authority to change my diagnosis, but thankfully the behavior specialist or my nurse practitioner don’t really question it either.

      Like

  1. Perhaps labels matter in certain ways; they help us understand ourselves and each other in ways we might not otherwise. But they also don’t matter in other ways; regardless of what a label says about us, we know who we are underneath and that we are worthy and loved. Hope you have a Merry Christmas, Astrid.

    Liked by 1 person

    1. Thank you so much. Yes, since becoming a Christian last year, I feel like what matters most to me is that I am worthy and loved by God. He doesn’t see the labels other humans put on me or even the labels I put onto myself. Of course, labels matter in the healthcare system, but in other interactions and especially in my spiritual life, I try to let go of them. Wishing you a merry Christmas too.

      Liked by 1 person

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