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 found my late diagnosis both illuminating and devastating.

I knew from a young age that I was different from other people, but I had no terms to describe my additional needs and I was unable to ask for reasonable adjustments from society. Many autistic people experience bullying at school and in workplaces, as bullies and predators can spot our differences. A minority of autistic people naively get in with the wrong crowd of people, use substances and encounter the criminal justice system. My fatal path was to fall into the arms of the mental health system.

By the age of 16 I was delving into anorexia. My need for rules, perfection and routine was met by counting calories and losing drastic amounts of weight. I felt in control and existed in a protective bubble. 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.

This was in the 1990s. At that time I never met any health professional who spoke about autism. There was no screening for neurodivergence in hospital. While I was in 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. No-one told me I had this diagnosis at the time, I only found out by searching for the name of a day centre I attended (a therapeutic community) that was mentioned as the place best able to help people with that diagnosis.

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. I spent most of my time alone, doing the same voluntary work and I had few consistent friends.

All the clinic letters framed me as BPD, so an 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.

Ten years passed in community mental health services and no psychiatrist, social worker, support worker, occupational therapist, psychologist, or nurse ever considered that I might be autistic. I was offered one year’s psychodynamic psychotherapy at the end of my time in services though it felt like a bribe to get me to leave and not come back. My BPD diagnosis was still not reviewed then or since.

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

Although self-identification of autism is valid, people don’t necessarily believe it. I paid for a private autism diagnostic assessment as there was a 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 (which was made by a leading expert.)

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 in the past without any suggestion that we might be neurodivergent. No adaptations were made to therapies and then we were blamed by services for not recovering.

It is hard to discover that you are autistic after you’ve been convinced that everything wrong with you was due to your personality disorder. Some parents realise they might be autistic after their child is diagnosed. However, this is not possible if you haven’t been a parent, or if your children were removed by the state on mental health grounds. Now the onus is on us to correct previous misdiagnoses and we are unable to look to the mental health system to help us, a system that often betrayed us.

There are steep barriers to diagnosis. The only pathway to therapy is through complex emotional needs (CEN) services, which are likely to emphasise the personality disorder and not see autism as a differential diagnosis. A GP can refer for an adult autism assessment, though the referral form asks if the patient has ever been diagnosed with a personality disorder, and it may take even longer to receive an assessment for ‘complex’ cases. The NHS often subcontracts assessments to private providers where the patient is unable to choose the gender or profession of their assessors. These things can be important if we’ve 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 by this time we 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.

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. The Royal College of Psychiatrist’s autism champion wrote in a blog in April 2024 recognising this issue:

“I first became interested in the field of autism nearly 20 years ago. I’ve also seen a number of female patients with a diagnosis of borderline personality disorder who I now suspect had undiagnosed autism. In those days, clinicians rarely considered the possibility of autism in women and girls as it was seen as mainly affecting boys.”

I think this is positive, but it needs to be matched by the commitment to review all those potentially misdiagnosed patients.

Positive Action

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. This should be possible given that notes are not deleted for 20 years after the last patient contact (even when patients want the 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 step is important to prevent diagnostic overshadowing for physical health conditions.

4. Psychologists and therapists to review their therapies and adapt them for autistic patients. This may require longer sessions than 50 minutes, 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 neuroaffirming and trauma informed, recognising the complex trauma of autistic people who have been historically wrongly treated for personality disorders within institutions and therapies.

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.

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

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 neuroaffirmative, unbiased and safe for autistic people.

This is a Sample Article from the Winter 2024 issue of Asylum Magazine.  To read more, Subscribe to Asylum.