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Experiences of people diagnosed with ASD as Adults

JB89

Hi everyone,

I'm looking for advice and insights from people who have gone through the adult diagnosis process for Autism Spectrum Disorder. I'm in my mid-30s and have struggled with my mental health and feeling constantly overwhelmed for most of my life.

Several years ago, I was diagnosed with Borderline Personality Disorder (BPD), but I’ve never fully related to the diagnostic criteria, and I’ve always had a sense that it didn’t quite fit. Over the past couple of years, I started working in child development and, through learning more about autism, I began to recognize a lot of traits in myself. This led me to research further — particularly about how many girls mask effectively in childhood and are often missed in the diagnostic process. I also came across information about the high rate of BPD misdiagnosis in women due to overlapping signs like emotional dysregulation.

Now, I’m considering challenging my current diagnosis and asking to be assessed for ASD through my local mental health team. However, I do have a few concerns. Living with a BPD diagnosis has been difficult — it’s a heavily stigmatized condition, and I’ve personally experienced that stigma. For example, I wasn’t taken seriously during a serious health issue in pregnancy, and I’ve also found that NHS support for BPD is limited and difficult to access.

What I’m really hoping to understand is:

-If you were diagnosed with ASD as an adult, have you experienced stigma since your diagnosis?

-Has the diagnosis been helpful or meaningful for you? In what ways has it improved your life, if at all?

-Are there any NHS treatments or supports available to autistic adults, such as occupational therapy or mental health services tailored to neurodivergent people?

I’ve masked for many years and have just about managed to get by, but I’m exhausted. I don’t want a diagnosis for the label — only if it could genuinely help improve my quality of life. I know that’s a deeply personal experience and different for everyone, but I’d really appreciate hearing from others who’ve been through this journey.

Thank you for reading. 

Parents

  • Hello there!

    JB89 said:
    the high rate of BPD misdiagnosis in women due to overlapping signs like emotional dysregulation.

    It’s wild how common that is. Yeah, I’d say it is worth getting a new assessment, especially since - as you said - it is difficult living with a BPD diagnosis.

    1. Kind of. Medically? No. But I live in a region (Midwestern USA) that has heavy stigma against Autism and vaccines, so I’ve had to be careful who I disclose my diagnosis to. Not necessarily that I’d be mistreated - though I am afraid of that - it’s more that I’d be forced to correct misconceptions.

    2. It has! I have deeper understanding of both what I have done in the past and what I am capable/incapable of in the future. I have also formed very strong bonds with others on the spectrum since my diagnosis as well.

    3. I don’t know about NHS (I’m from America, after all), but I do know there are therapists out there that are tailored towards Autism. I recently had couples counseling and art therapy, both with therapists with a background in adult Autism, and I had a positive experience with both.

    I think it could be a positive change for you to get the changed diagnosis, but do be warned that A) Misdiagnosis could still happen, since again, misdiagnosis is strangely common with women and B) Some people do feel fatigue and let down after getting the diagnosis. Though that didn’t happen to me, I’ve read on here several accounts of people who were uncertain what to do with the diagnosis afterwards.

    I hope that helps!

Reply

  • Hello there!

    JB89 said:
    the high rate of BPD misdiagnosis in women due to overlapping signs like emotional dysregulation.

    It’s wild how common that is. Yeah, I’d say it is worth getting a new assessment, especially since - as you said - it is difficult living with a BPD diagnosis.

    1. Kind of. Medically? No. But I live in a region (Midwestern USA) that has heavy stigma against Autism and vaccines, so I’ve had to be careful who I disclose my diagnosis to. Not necessarily that I’d be mistreated - though I am afraid of that - it’s more that I’d be forced to correct misconceptions.

    2. It has! I have deeper understanding of both what I have done in the past and what I am capable/incapable of in the future. I have also formed very strong bonds with others on the spectrum since my diagnosis as well.

    3. I don’t know about NHS (I’m from America, after all), but I do know there are therapists out there that are tailored towards Autism. I recently had couples counseling and art therapy, both with therapists with a background in adult Autism, and I had a positive experience with both.

    I think it could be a positive change for you to get the changed diagnosis, but do be warned that A) Misdiagnosis could still happen, since again, misdiagnosis is strangely common with women and B) Some people do feel fatigue and let down after getting the diagnosis. Though that didn’t happen to me, I’ve read on here several accounts of people who were uncertain what to do with the diagnosis afterwards.

    I hope that helps!

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