BPD and finding hope from autism self-discovery

Content note: discussion of self harm, eating disorders and iatrogenic harm

The word ‘autism’ has changed everything so quickly.

I wrote nearly three years ago about my exclusion from mental health services. I knew that ‘section zero’ and the indefinite exclusion I experienced was a result of my Borderline Personality Disorder (BPD) diagnosis two decades ago, but at the time of writing, I couldn’t have known that not only had the mental health trust barred me, but they had denied access to my undiscovered authentic autistic self.

My self-discovery of autism was the result of burnout at work and a chance realisation about my first degree autistic relatives. It was coincidence, not design. I had watched the excellent BBC documentary ‘Unmasking My Autism’, but made no connection with women’s experiences of late diagnosis shown on the programme, though I felt it was unfair that women with such similar characteristics to mine could be recognised as neurodivergent while I was stuck with a BPD label for the rest of my life. I didn’t think it was possible that I might have a different condition when I already had a long list of psychiatric diagnoses, most of them outdated. I must have seen over a dozen psychiatrists, NHS and private, and none of them ever suggested that I might be autistic.  

The spark of a family connection meant I launched into researching autism in my usual all-out obsessive way. While I am no longer able to read books due to their prompting of a flood of random memories, I devoured books on autism, feeling as though they held a mirror to my life. I felt understood for the first time when I heard the stories of late-diagnosed women on the SquarePeg podcast.

I remembered the girl I once was. The sensitive soul who walked on tiptoes and felt painfully self-conscious. The girl who fainted when expected to read aloud in class. She would kneel on the floor as chairs were uncomfortable. Her fixations on teachers helped her escape from high school where peers teased her. The vulnerable girl who became an adult and was swallowed up by mental health services. She gave up her identity and skin by copying other patients’ self-harm and absorbing their pain. Services excluded that undiagnosed autistic girl as much as the perceived BPD nuisance.

I lost 24 years of my life to the shame and wrong fit of BPD. The tragedy of giving an autistic person a BPD label is that it can be taken literally and to heart; I never could shrug it off and move on. I spent a fortune on private therapy to make myself less ‘dysfunctional,’ and still never understood how to overcome BPD when it wasn’t a construct that made any sense.

There are unfortunately overlaps between classifications of BPD and autism, but these can be teased out by looking deeper into the underlying reasons for diagnosis. I need a lot of alone time and that’s why it appears that I have difficulties with relationships. I dread trusted people moving on or dying as I don’t want my world to change, but I don’t describe this as fear of abandonment. I have a select group of female friends but can only cope with social contact in small doses, and this isn’t a sign of idealizing or devaluing people.

The reason I clung onto mental health services for so many years was that I didn’t know how to live outside of them. I felt safer in hospitals being re-fed for anorexia because there was a regime to stick to. I wish I could have known about autism during my first hospital stay aged 18, so that I could have asked for the help I needed to transition. Health services viewed me as overly dependent. No one saw that I was just lost in a world where I felt like a different species, and wanted someone experienced in life who understood to guide me.

For others, an autism diagnosis could feel like a route out of mental health services. There is very little post-diagnostic support. There is a good chance that your autism will be viewed by some health professionals as ‘mild,’ ‘high functioning’ and ‘not disabling’, even though your life can feel in pieces. My personal experience is that once deeply harmed by the psychiatric system, an autism realisation can offer a new self-understanding; I can re-assess my past through a self-forgiving lens and feel awe for my survival now I am able to see all that I was contending with. I don’t feel as much shame over episodes where I couldn’t foresee the consequences of my actions, when I know that I was doing my best at the time and never stopped trying to be a good person.  

I look back on letters from psychiatrists and the clues were there. The avoidant eye contact, euthymic mood, binary answers, refusal to join group therapies, ‘intellectualized report’. Psychiatrists didn’t grasp how I could be in acute distress but calm on the surface. I know now that Alexithymia means that many autistic people can’t name or identify how we are feeling; some autistic individuals don’t understand analogy, for example: when the psychiatrist asked me if I saw the glass as half full or half empty, I couldn’t answer him. Unless the offer of further appointments was made explicit, I would go away feeling as though I couldn’t be seen in outpatients again. It was only my fear of loss of control that saved me from overmedicating with unlicensed or off-label mood stabilizing or antipsychotic drugs to control my wrongly-named ‘impulsive’ self-harm.

I offer pointers here if anyone with a historic diagnosis of BPD believes they may be autistic:

  • Self-explore initially and look at screening tools. If unable to read, try audiobooks and podcasts. Search for autistic writers and advocates. As you find out more about autism, you will recognise whether this reflects your inner experience. It is important to grasp early on that every autistic person is unique and this is a wide spectrum.
  • Self-identification is 100% valid and accepted by the autistic community. There are many barriers around formal diagnosis such as waiting lists, the cost of private routes, diagnostic tools designed from assessing boys and difficulties involving informants from childhood. Membership of online communities, self-development courses and reasonable adjustments by many public sector employers can be done on self-identification.
  • There are advantages to staying self-identifying if the diagnostic assessment process feels too much. It is remarkable how in-depth an autism assessment is compared to the dishing out of EUPD labels by psychiatrists who may spend only minutes with a new patient. I spent four and a half hours talking both online and in person to two autism specialist assessors after submitting five questionnaires.
  • Formal diagnosis of autism may be needed when it comes to welfare benefits or access to health services. Where you can experience ‘imposter syndrome’ a formal diagnosis may help counteract that. I chose formal diagnosis as I didn’t expect others to believe me.
  • Overturning a BPD diagnosis can be very difficult. Take care around investing in autism assessment privately in an attempt to disprove a historic BPD label. Mental health services could unhelpfully still discount the diagnosis or say that EUPD is the predominant ‘disorder.’
  • Be prepared to wait if going for assessment on the NHS. The waiting time in my area is three years and this is typical.  First you need to see your GP who makes the referral for assessment. This will probably be screened by the provider so it can take months just to find out if you are accepted onto an assessment pathway. Any PD diagnosis in the past is likely to trigger a more ‘complex’ assessment as providers believe we can produce false positive results. Most NHS providers outsource assessment to private companies, so this can feel like another risk.
  • The right to choose is possible where you can be referred on the NHS but opt for a private provider. Choose carefully and seek others’ experiences through online communities. The assessment quality matters to the outcome, it isn’t just a case of getting seen sooner.
  • All providers should be NICE compliant, using recognised diagnostic tools. Many psychiatrists will offer a 45 minute online assessment for around £1000 and say this is ‘usually enough to confirm the diagnosis’, but this is subjective, not evidence-based and could lead to the wrong judgement. It is also a double standard that some psychiatrists can refuse to explore autism in their NHS practice but specialise in autism assessment in their private work.
  • Check with local health services whether they are likely to accept your private provider recommendations. You can research the providers your Integrated Care Board uses for autism assessments.   
  • Good assessment providers will also offer a feedback session and a detailed report of recommendations.
  • Make sure the provider will assess without an informant if you no longer have anyone from your childhood to answer questions. This may be true if you have had a dysfunctional family or parents have died. A neurodivergent family may also not be able to speak reliably about how you acted differently as a child as that was their ‘normal.’
  • If you are female, non-binary or AFAB, choose a provider which understands different gender and autism presentations. I found my assessment provider by looking up the names of researchers featured on the BBC documentary I referred to earlier, as I wanted experts involved in research around autism in women and girls.
  • A formal assessment will bring up a lot that can be painful about childhood experiences and relationships. You need support on this journey.

I am not alone in misdiagnosis of BPD, but most of us will be out of reach of services by now. For generations, autism has been associated with specific and outdated stereotypes often aligned with boys and ignored or rejected in girls, and while recognition of autism in women and girls  — especially when high masking — has improved in recent years, there is still no recall system for people previously diagnosed with BPD.

In a different branch of medicine, the patient would be contacted if given a faulty medical device or an unsafe drug. Instead, we are left to suffer alone without the knowledge of autism which could unlock a whole community and sense of identity. And even if and when we find our truth, we can’t seek an apology from the services that caused iatrogenic harm due to the time that’s lapsed.

The BPD/Emotionally Unstable Personality Disorder diagnosis is problematic and offensive for so many reasons beyond overlooked autism. Trauma, neurodivergence or mood disorder could explain all of the symptoms classified as EUPD, but we are saddled instead with a label used to denigrate vulnerable and traumatised people. The Neurodiversity movement offers a far more positive and affirming way of explaining differences: The word “difference” rather than “defect” or “disorder” says it all. We need to challenge the PD industry that wants to expand its remit even further and confront a system which works to wrong categorise and harm autistic people.