Navigating Mental Health: From BPD to Autism Diagnosis

The full article by an anonymous writer can be found in Asylum Magazine. This article mentions mental health treatment, hospitalisation, misdiagnosis, self-harm and eating disorders.

My story

I was diagnosed as autistic in my mid-forties. This understanding has provided me with so much clarity about my life. At the same time, I feel bereft as this knowledge has come far too late for me.

I knew from a young age that I was different from other people, but I had no terms to describe my needs. At the age of 16, I fell into the arms of the mental health system due to anorexia. My need for rules, perfection and routine was met by counting calories and drastically losing weight. Initially, I resisted the involvement of services but, after two years, my body and brain were so starved of nutrition that I gave in to several years of hospital stays.

In the hospital, I felt relatively safe, but some aspects of eating disorder treatment felt far from safe like being weighed in my underwear twice a week. I isolated myself from other patients, cut my skin and exercised in private. I was virtually force-fed and over-medicated to bring about my target weight which was supposed to cure me and make me happy.

When my time in eating disorder services ended, I felt far from happy, especially when they said they didn’t want me to come back. I was still struggling and got dismissed from a job where I overshared about my mental health. By the time I was 24, I was given a new diagnosis of borderline personality disorder (BPD) without an assessment and solely based on my self-harm. I only found out about this diagnosis when I looked up the name of a day centre I attended that was mentioned as the best place to help people with BPD.

I tried to challenge the BPD label but was told by my psychiatrist that it was impossible not to give someone who self-harms this diagnosis. I pointed out many times that I am not impulsive, risk taking or angry. All the clinic letters continued to frame me as BPD, so my overdose was described as ‘impulsive’ even though no one asked why it happened. Professionals questioned why I refused to enter specialist personality disorder services where I could meet people “just like me”. I lost the fight to be seen as anything more than a BPD stereotype and I never met a health professional who spoke about autism.

It has taken until 2024, over 22 years since I was diagnosed with BPD, to discover that I am autistic. I only realised when I experienced autistic burnout due to work. I was seeing a private psychologist who observed the difficulties I had with change and raised the idea of autism, related to my late father who personified an undiagnosed autistic.

I paid for a private autism diagnostic assessment to avoid the three year wait on the NHS. I didn’t feel like I could trust the NHS to diagnose me correctly and not show bias, given my previous experience. However, even though I now have a formal diagnosis, I am still unable to get BPD removed from my medical records and suspect that services would say I had BPD as well, or even dispute my autism diagnosis.

Barriers to diagnosis

In recent years, there has been a huge increase in the number of adults seeking assessment for ADHD and autism. Many of us were diagnosed with various mental health issues instead and then blamed by services for not recovering. Now the onus is on us to correct previous misdiagnoses.

There are steep barriers to diagnosis. A GP can refer for an adult autism assessment, unfortunately the referral form asks if the patient has been diagnosed with a personality disorder, and it may take longer to receive an assessment for ‘complex’ cases. Also, the NHS often subcontracts assessments to private providers where the patient is unable to choose the gender or profession of their assessors, which do not assure patients who have felt invalidated by psychiatrists.

The financial cost of private assessment means this isn’t an option for most people. Assessments often need someone from your childhood to talk about your behaviour from decades ago but many of us may have lost parents, or our now elderly parents may not remember how we played when we were three years old. Plus, it can be re-traumatising to recall examples from our childhood. My assessment was in person, as well as virtual, and lasted over four hours, involving many questionnaires. The in-depth assessment for autism is a huge contrast to the way that a personality disorder diagnosis is handed out within minutes. (Katie, who edited this piece shares their diagnosis story here).

How mental health services should change

I hope that psychiatry wakes up to its historic mistreatment of autistic people labelled with a personality disorder, especially women and those assigned female at birth. I think the mental health system needs to take a proactive approach to repairing the harm done to patients’ lives. The following actions would be a start:

1. Mental health trusts to consider reviewing historic records and recall patients previously diagnosed with BPD (Patients notes are kept for 20 years after the last patient contact, even when patients want their notes to be destroyed).

2. Introduce a fast-track referral system to remove BPD diagnoses. This should not be dependent on a crisis, which might be interpreted as reinforcing the original incorrect diagnosis.

3. GP surgeries to remove the BPD label from current medical records once requested by autistic patients. This prevents diagnostic overshadowing for physical health conditions.

4. Psychologists and therapists to review and adapt their therapies for autistic patients. This may require more flexibility and less rigid adherence to single modalities.

5. A truth and reconciliation project developed by survivors holding psychiatry accountable, so they acknowledge the harm done to the autistic community.

6. Mental health trusts to become neuro-affirming and trauma informed, recognising the complex trauma of autistic people who have been historically wrongly treated for personality disorders within institutions.

7. Fund peer groups of autistic survivors to help us come to terms with past misdiagnosis and its consequences.

8. Review approaches to self-harm which assumes BPD and banishes patients to personality disorder services.

Finally, it is important to note that an autism diagnosis is no guarantee of good mental health care. Mental health services can still fail patients with an existing diagnosis of autism. There is much work to be done for the mental health system to be truly neuro-affirmative, unbiased and safe for all autistic people.

There is hope and innate resourcefulness in the autistic community, but we need support to reclaim our identities and recover from wrongful diagnosis.