Autism, ADHD and Emotionally Unstable Personality Disorder (EUPD)
I recently worked with the National Centre For Autism and Mental Health (NCAMH) to record some podcasts as part of course content for their diploma. One of these was on autism and Emotionally Unstable Personality Disorder (EUPD). This is something I feel strongly about and seeing as it’s been almost five years since I wrote my last blog post on this (where does the time go!?), it’s time for another.
Some research found that 1 in 4 autistic people believed they had been misdiagnosed before their autism diagnosis, and 17.9% of autistic women felt they had previously been misdiagnosed with a personality disorder (Kentrou et al., 2024). That’s true for me too. I was discharged from a CAMHS unit at the age of 16 with a diagnosis of Mixed Personality Disorder - Emotionally Unstable and Obsessive Compulsive Personality Disorder, as well as Generalised Anxiety Disorder. Even though the traits of these conditions, to me, so clearly describe a neurodivergent young person in distress.
What is Emotionally Unstable Personality Disorder (EUPD)?
EUPD (also known as Borderline Personality Disorder or BPD) is a personality disorder characterised by intense emotions and emotional dysregulation, impulsivity, intense and unstable relationships, self-harm, suicidality and unstable sense of self. Individuals with this diagnosis have often experienced trauma (Mind, 2022).
According to the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders), five out of nine symptoms need to be met in order for a diagnosis to be given. These symptoms are:
efforts to avoid abandonment
unstable and intense relationships
unstable sense of self
impulsivity
recurrent suicidal behaviour
unstable mood
chronic feelings of emptiness
intense anger
transient stress-related paranoia or dissociative symptoms
(Chapman et al., 2024)
In earlier versions of the DSM, personality disorders couldn’t be diagnosed in those under 18. However, apart from antisocial personality disorder, they now can be ‘if the features have been present for at least one year’ (CAMH, 2019). Some research suggests that this allows earlier intervention to ‘improve prognosis’ (Kaess et al., 2014), but it shouldn’t be the case that a diagnosis is required to access a specific therapy like DBT (Dialectical Behavioural Therapy) - especially in children, whose personalities and brains are still developing. There is no reason why intervention suitable for the presenting needs can’t be implemented without a diagnosis - though, of course, it’s important to explore what those needs actually are and why they’re there. For instance, if the environment is unsuitable, therapy isn’t going to change that. Although a diagnosis might give a young person an explanation for their challenges, other explanations should be thoroughly considered.
My Experience of Misdiagnosis of EUPD
I was admitted to a CAMHS (Child and Adolescent Mental Health Services) inpatient unit when I was 16. I had been in sixth form for less than two weeks. After years of such intense anxiety, I felt like I couldn’t cope anymore and like the world wasn’t made for me, so I attempted to end my life. I was initially admitted informally (meaning that I agreed to the admission), but after about three weeks I was sectioned under the Mental Health Act. That came about because I had a diary I wrote absolutely everything down in. I wrote all day every day as a coping strategy, but after three weeks I was told it was a prohibited item because it had a ring binder on it, so they took it off me. I was so distressed because my diary wasn’t finished and I couldn’t start a new one. I demanded to leave and then I was sectioned.
I had the most meltdowns that I have ever had in such a condensed period of time on that unit. My parents actually met with my doctor to discuss whether I could be autistic, but he thought I just had high social anxiety and was very emotionally dysregulated. But now I’ve read my notes from the unit, my triggers are listed as things like change in routine, strangers, noise and lack of control - and I can’t comprehend how my autism wasn’t picked up (as well as my ADHD as I’m described as fidgety, impulsive etc!). My notes say that I had ‘hysteric attacks when she doesn’t get her own way’ - they were autistic meltdowns because of the environment, unpredictability, changes and anxiety.
I was discharged from the unit with a diagnosis of Generalised Anxiety Disorder and Mixed Personality Disorder (emotionally unstable and obsessive compulsive) at the age of 16. At the time, I accepted these diagnoses and understood where they came from - I couldn’t understand why my emotions were all over the place and why I couldn’t control them. But my subsequent diagnoses of autism and OCD, and then later ADHD, helped me to understand in a way these diagnoses never did.
A couple of years after these diagnoses were given, during a review with my psychiatrist in the adult mental health team, I presented my argument that I didn’t actually meet five of the nine symptoms of EUPD, and those that I did could be explained by my autism. He agreed and removed the diagnosis. He wrote a letter outlining why I didn’t meet the criteria. This was about five years ago. Yet, last month, my GP referred me to dermatology (not at ALL related), and ‘personality disorder’ was listed under ‘active problems’ from 2017. I don’t have the energy to ask for this to be removed and to explain why.
I know that mistakes can be made and medical professionals are only human. They can only go off the knowledge and training they have at the time and the presentation that they are observing. So, better training is needed. That’s why it’s been brilliant to work with the National Centre for Autism and Mental Health, who are covering this in their diploma.
How can Autism and ADHD look like EUPD?
At the end of the day, the diagnostic criteria for EUPD is a cluster of symptoms/behaviours that is possible to meet regardless of whether you are autistic or have ADHD. Some autistic people/ADHDers may be diagnosed with EUPD and feel this helps to explain their challenges. But there are many of us who feel we were misdiagnosed.
I believe that I was a distressed and anxious undiagnosed autistic young person with ADHD (and OCD). I do not believe I ever had a personality disorder. But this is how an autistic/ADHD person might seem to:
They may have difficulty with change and feel anxious around strangers —> looks like efforts to avoid abandonment from people they trust
They may struggle with social communication and forming or maintaining friendships —> looks like unstable relationships
When they do form a friendship, they may ‘fixate’ on this —> looks like intense relationships
They may feel confused and misunderstood due to their experiences of the world —> may result in unstable sense of self
Impulsivity due to ADHD —> looks like EUPD impulsivity
They may feel distressed due to overwhelm, anxiety and feeling misunderstood —> may result in low mood and suicidal behaviour
Once an idea in their head is there, they may ‘fixate’ on this and struggle to let it go —> may mean suicidal behaviour is recurrent
They may experience intense emotions and emotional dysregulation common in ADHD/autism —> leads to unstable mood
They may struggle to identify emotions and feelings (alexithymia) —> may feel emptiness
Intense emotions and strong sense of perceived justice may result in anger —> ticks the box for intense anger in EUPD
They may experience anxiety and overthink things or see things in different ways to others —> may appear like paranoia
They may experience autistic shutdowns or burnout —> may look like dissociation
I believe that it is quite easy for a distressed autistic/ADHD person to meet the criteria for EUPD, but that doesn’t mean they have EUPD. Autism/ADHD may explain this. For example, 'extreme emotional mood swings' may be an autistic meltdown due to sudden change in routine or not being able to engage with their special interest. Although their external behaviour appears to tick the symptom of a personality disorder, in this case it is occurring because they are autistic. I don’t think this means that they have BPD/EUPD too.
Why Was My Autism/ADHD Missed?
My experience has taught me that once you are believed to have a personality disorder in the mental health system, your challenges can start to all be viewed through this lens. In the unit, it wasn’t suspected that I could be autistic - I believe - because I am eloquent and chatty, I had friends, I got good grades, no-one had raised this when I was younger and I masked my way through school (read about masking here). I learned to suppress parts of myself that I believed were ‘weird’ and copied those around me to try to fit in.
Despite this, if people knew what they were looking for, they would have seen it. I have always struggled to understand sarcasm and jokes. I’ve always taken things literally. My sensory sensitivities were very visible at secondary school - I had to be taken off site when there were planned fire alarms because of how distressed I became by the noise! My rigid thinking made recovering from my mental health challenges difficult. I don’t think the professionals on the unit had the understanding of autism or ADHD and what it can look like to identify it. I think they saw me as very emotionally dysregulated, labelled me with a personality disorder and that’s how my challenges were viewed until my neurodivergence was identified.
Why Does This Matter?
For me, finding out that I am autistic and have ADHD changed my whole life. It saved my life, in various ways. It allowed me to understand why I had always felt different and I was introduced to language that explained what I experienced and frameworks to understand my experiences within. I wrote a whole book about it and my experience - Girl Unmasked: How Uncovering My Autism Saved My Life which is now available in paperback.
The Royal College of Psychiatrists say that unadapted therapy for autistic people is ineffective at best and harmful at worst. So if our autism isn’t recognised, how are we going to get the right treatment and the right support? My autism diagnosis meant that therapy was adapted for me, my CAMHS team were able to work with me with the knowledge that I was autistic, I was granted a mentor at university via Disabled Students’ Allowance and my sensory needs were acknowledged properly. That’s not to say these things should require a diagnosis - but it made a difference for me.
My ADHD diagnosis meant that I was able to start ADHD medication rather than continuing on the antipsychotic I had been prescribed since I was 16. Rather than continuing to believe my personality was disordered and I needed to work harder at therapy to change the way my brain worked, I was able to learn about my neurodivergence and embrace and accept myself exactly as I am (though, self-improvement and learning new skills to manage better is something I’m always working on!).
I hope that this blog post has been insightful, and do take a look at the work that the National Centre For Autism and Mental Health (NCAMH) are doing!
References
CAMH. (2019). Personality disorders: diagnosis. https://www.camh.ca/en/professionals/treating-conditions-and-disorders/personality-disorders/personality-disorders---diagnosis
Chapman et al. (2024). Borderline personality disorder. https://www.ncbi.nlm.nih.gov/books/NBK430883/
Kaess, M., Brunner, R. & Chanen, A. (2014). Borderline personality disorder in adolescence. Pediatrics, 134, 782–793.
Kentrou et al. (2024). Perceived misdiagnosis of psychiatric conditions in autistic adults. The Lancet, 71, 102586. https://doi.org/10.1016/j.eclinm.2024.102586
Mind. (2022). Borderline personality disorder (BPD). https://www.mind.org.uk/information-support/types-of-mental-health-problems/borderline-personality-disorder-bpd/about-bpd/
Royal College of Psychiatrists. (2020). The psychiatric management of autism in adults. https://www.rcpsych.ac.uk/improving-care/campaigning-for-better-mental-health-policy/college-reports/2020-college-reports/cr228
GIRL UNMASKED (The Sunday Times Bestseller) is available to order from Amazon and all major bookstores as a hardback, paperback, audiobook and ebook.
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