It Wasn’t BPD… I’m Autistic

I was diagnosed with Borderline Personality Disorder (BPD) when I was 26 years old. I’m now a month shy of my 33rd birthday and this diagnosis has just been struck from my record.

It wasn’t BPD. I’m autistic.


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The first thing I want to make very clear is that I am in no way claiming that:

a) BPD isn’t a valid diagnosis

b) everyone diagnosed with BPD is actually autistic

c) BPD is somehow a “lesser” diagnosis than autism

d) you can’t be autistic and have BPD simultaneously

BPD is absolutely a valid diagnosis and many people find it accurate and appropriate for their experience. You can have BPD and not be autistic. You can be autistic and not have BPD. You can be autistic and have BPD.


Okay, let’s get started.

BPD is also referred to as Emotionally Unstable Personality Disorder (EUPD). There is still an active discussion amongst both patients/clients/service users and those in the medical profession about which of these names is the most appropriate, and other names are still being suggested. For the sake of continuity, I will be using the term BPD, as this is the term that I used in my own experience with the diagnosis.

By my mid-twenties, I had been in the mental health system for many years, but my steady deterioration was accelerating at an alarming rate. I had an appointment with a psychiatrist I’d never met before. I left that appointment with a new label: BPD.

I didn’t know it at the time, but this hastily applied label had placed me into a very specific, very incorrect box, from which it would take me around eight years to escape.

At the time, I felt like the BPD diagnosis was correct. I mean, a psychiatrist said it so it must be true, right? Plus, I had been shown how my symptoms aligned with the diagnostic criteria – nine out of nine, in fact.

We’ll talk more about this later.

Treatment

So I was placed into a long-term DBT-esque treatment programme called Intensive Life Skills. This involved weekly group “education” sessions, learning about problem-solving, emotional regulation, impulsivity, and interpersonal effectiveness. I also had weekly one-to-one appointments with a Community Psychiatric Nurse (CPN).

Other treatments included Eye-Movement Desensitisation and Reprocessing therapy (EMDR), counselling, Cognitive Behavioural Therapy (CBT), various medications, an inpatient stay in a psychiatric facility, plus several emergency treatments for self-injury and suicide attempts. I read books and watched lectures and joined discussion groups and meditated and tried reiki and attended recovery programmes and social clubs… absolutely everything that was suggested to me and more.

But things just never improved. And I’ve now come to understand the reason things never improved is that I was being treated for the wrong disorder.

Autism

At the time of writing, I’m 32 years old (33 in about a month) and I just got confirmation that I am, in fact, autistic.

All those symptoms of “BPD”?

It was autism. Undiagnosed, unsupported, unrecognised autism. This is a very abbreviated explanation, but it was autism.

The symptoms that had been assigned to BPD diagnostic criteria were either features of autism in itself, or they were the effects of living with undiagnosed autism manifesting as autistic meltdown/shutdown, along with depression and anxiety. The neurotypical world was kicking my autistic ass and I had no way to conceptualise or understand or cope because I didn’t know it was autistic, and neither did the people “treating” me.

Autism is not a mental illness. My experience with mental illness has stemmed from being autistic, but only in the sense that I was unknowingly living an autistic life in a world that isn’t equipped to support autistic people, and it was killing me. I couldn’t figure out what was “wrong” with me or why I was struggling so much.

The symptoms of BPD and the signs of autism in adults have a lot of overlapping features. Black-and-white thinking, problems with interpersonal effectiveness, and rejection-sensitive dysphoria are just a few examples.

I don’t think anyone is expecting there to never be any mistakes in diagnoses when the signs of both have similarities. Plus, sometimes BPD is the right diagnosis! I’m not saying it should never be diagnosed. That’s not the point at all.

The point is that BPD has increasingly become a “catch-all” diagnosis.


Pigeonholed

Yes, it’s true that someone would need to meet five of the nine diagnostic criteria for BPD in order to receive that diagnosis. But it seems, from my experience (and the experience of others with BPD with whom I’ve communicated) that once you are diagnosed with BPD, the questions stop. There is rarely, if ever, the recognition that there could be *something else going on*.

What if it’s not BPD?

What if it is BPD but it’s also autism?

What if there is more to consider?

But the BPD pigeonhole is very real and very dangerous.

Added to this is the fact that there is still a great deal of stigma surrounding BPD, even (perhaps especially) amongst medical professionals.

People with BPD are often treated poorly when they seek help, with many being scolded or even mocked for their distress, being told to “take responsibility”, “stop attention-seeking”, or “just try harder”. Today’s BPD patients/service users are often treated like the “hysteria” patients of the past. Dismissed, ridiculed, rebuked.

“They’re all draining”

– A tweet posted by a self-professed DBT therapist about working with clients who have BPD.

“Just stop giving her attention when she does this”

– A crisis team worker to my parents after an incident of self-injury landed me in hospital and they asked him how they could support me.

This enduring stigma and reckless dismissal can result in a failure to investigate potential co-morbidities such as Complex Post-Traumatic Stress Disorder (C-PTSD) or neurodevelopmental conditions such as autism or Attention Deficit Hyperactivity Disorder (ADHD).


The answer?

Honestly, I don’t have the answer. My diagnosis is new and I’m still processing what it means for my life. But I know I am angry. I’m angry that I’m almost 33 and I’ve spent most of my adult life being pushed through a system that had stuck the wrong label on my forehead. And I do have some questions that I think need to be explored sooner rather than later, for the sake of the increasing number of autistic people who are being misdiagnosed with BPD.

  • Why are so many autistic people misdiagnosed with BPD?
  • Why are people who are diagnosed with BPD so frequently stigmatised/ignored/pigeonholed?
  • Why is autism such an afterthought, or something the patient has to fight to be explored?
  • What can be done to improve the diagnostic process?
  • And last but not least: how do we change this?

Have you been misdiagnosed with BPD?
Are you an autistic person who also has BPD?
Has a BPD diagnosis impacted your journey towards an autism diagnosis?
What is your experience of how BPD and autism overlap?

Share your thoughts in the comments below.

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Related article: The Worst Mental Health Advice I’ve Ever Received


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3 comments

  1. Wow. That’s a lot. I’m glad you’re angry. You should be angry. I”m also glad you have a new path.

    I don’t know the answer to your questions, but I will say this. Women are misdiagnosed when it comes to autism around 40% of the time. I think that societally, we’re still prone to look at women and think “hysteria.”

    Liked by 1 person

  2. […] I didn’t know I was autistic at this time, but I can now see how much the structure of Calvinism appealed to my need for things to “line up” and “make sense”. They taught what was in the bible – it matched up. They had clear rules and clear beliefs, preached by clear, authoritative speakers such as Voddie Baucham (a well-known Calvinist preacher). My brain thrived on connecting the dots and seeing those connections come to life from the bible to daily living. It was consistent. I knew what was expected of me, I could link it back to the text, and it made me feel secure. […]

    Like

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