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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. 

  • Hi JB89,

    I found your post really interesting as I work in secondary mental health and now have a diagnosis of ASD and ADHD.

    I have found the ADHD diagnosis and my new ASD DX helpful .

    Regarding BPD there is a big overlap with ASD We are working with   more women with BPD looking for an ASD diagnosis . Please note Iam  non clinical so am not a Psychiatrist or Psychologist just lived experience 

    The support for ASD doesn't seem great but I think there's less of a stigma than for BPD .I guess there's always the worry of a new diagnosis 

    Dr Tony Atwood AsD expert  on line explain the similarities and the difference of the 2 but they have a big overlap .

    Hopefully there will be some people on here with experience of both.

    Good luck 

  • Hello!

    I was also diagnosed with BPD (and many others!) Before researching autism and adhd, due to my daughters being referred for assessments. 

    I never really thought that the BPD diagnosis was right. And the more research I did the more I realised that it resonated with my life experiences. Only way for me to describe it, was it felt like home. 

    The validation of finally getting a diagnosis last month was huge. As much as I still have bad days, it doesn't feel quite as bad as it used to, if that makes sense?

    I am still getting to know the real me and accepting myself more. But I am feeling so much more positive about life than I ever have since my diagnosis. 

    I have been with steps 2 wellbeing for years. The last lot of therapy i had was designed for neurodivergent people. You can self refer or ask your GP?

  • 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!

  • JB89 said:

    -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?

    Stigma? No, but only because I haven't told anyone except my wife. I am treated differently because people perceive me as an NT who is "doing it wrong", though. I still mask heavily and avoid situations where I'll struggle to keep up. It's a work in progress.

    Helpful or meaningful? Yes, very much so. It was life-changing. It gave me a completely different perspective on my past, present and future. I'm much kinder to myself now and I no longer feel like I don't deserve that kindness. I'm not a bad or broken person, I'm just a bit different and need a bit of support or accommodation with a few things.

    If you haven't read it yet, try "Girl Unmasked" by Emily Katy. She was misdiagnosed with BPD (I think) before being diagnosed as autistic. The difference saved her life, she claims. You might find her book very relatable, though it's a bit grim at times.