I was diagnosed with Autism Spectrum Disorder last week, aged 37 after having spent two decades in the healthcare system (including 15 years under a Community Mental Health Team) and no one ever realising I am autistic. Two days after being diagnosed, I signed up to the 20km Jurassic Coast Challenge in early July to fundraise for The National Autistic Society as a way for me to “celebrate” finding out my ASD diagnosis.
I have never felt more “normal” than I have the past few days, now I know that many of my difficulties are due to a neurodevelopmental condition, so I hope I can now make further progress with my life looking through a new “lens” with a far greater level of self-acceptance. I hope it might allow me to start to feel less defective, worthless and broken – things that I’ve been made to feel all my life so far.
My original Bachelors degree was in Geography, but I am a current MSc student studying Clinical and Developmental Neuropsychology. One of our lecturers has a particular research interest in late diagnosis of autism in females, and when we were learning about ASD in some of our lectures, it occurred to me that it could explain so many of the “challenges” I’ve faced all my life that have always made me very misinterpreted and misunderstood as a person, so I went about researching more and self-referred for an assessment. If I wasn’t doing my MSc, I would never have realised and found out about my ASD diagnosis.
I have a trauma history and I also have Complex Post-Traumatic Stress Disorder and Obsessive Compulsive Disorder as well many physical challenges caused by hypermobile Ehlers-Danlos syndrome (EDS), Mast cell activation syndrome and dysautonomia. There continues to be emerging links between EDS and neurodevelopmental conditions such as ASD.
When I was 20 I disclosed some of my childhood trauma history and started self harming. As far as the CMHT saw my “problems” – they interpreted and diagnosed Borderline Personality Disorder (BPD)/Emotionally Unstable Personality Disorder (EUPD) which even now, fundamentally and very cruelly inhibits my very existence. The newly revised ICD-11 was released earlier this year which recategorized personality disorders into one umbrella disorder, with “borderline pattern qualifier” still remaining. However EUPD still remains in all my records that the CMHT, local NHS hospital, police, ambulance services all hold for me. I did not even meet the diagnostic criteria for EUPD in the previous versions of the ICD and DSM, and I’ve spent many years fighting to get this removed as have had it confirmed by seven outside independent psychiatrists that I meet the diagnostic criteria for complex PTSD. I’ve asked the CMHT I was previously under for justification why they think I meet the criteria for EUPD, they clearly cannot justify this diagnosis but just respond that “in their opinion it explains the difficulties I have” – that is the absolute best justification they’ve ever been able to provide. Meanwhile this misdiagnosis still haunts my existence.
From my self-taught learning, I realised that my self harm is very likely linked to early childhood attachment trauma, although this was never taken on board by the CMHT. As young children, when we form health bonds with our primary care givers, we learn the ability to co-regulate and regulate our nervous systems. It wouldn’t have learnt how to do this in a healthy way, and so years later I think that’s the reason I turned to self harm. And of course, added into this in the context of finding out about my ASD diagnosis, sadly there are high rates of self harm and suicidality in the autistic community. I am glad to report though that its been over two years since I last self harmed and considering what a problem it used to be for me, I am so proud of this and I like to think I will never ever self harm again. Floating has really helped me in so many ways.
To me the difference between EUPD and C-PTSD is like saying “your personality is flawed and there is something very wrong with you as a person” compared to “you have difficulties because of what happened to you”. Sadly my formal complaints got turned round and blamed back on me – with an EUPD diagnosis still on all my records I distinctly seem to lack creditability and I’ve been discriminated against on the grounds of being seen to be “mentally ill”. When I’ve complained I’ve been told to phone the Samaritans and told that there was nothing wrong with the care I received, one time I tried to complain, the CMHT told me I was low in mood (I wasn’t, just frustrated) and was perceiving the care I received in a negative way due to my mood problems. They also tried to bully me and guilt-trip me into dropping my complaints.
The CMHT refused for so long to acknowledge that I have Complex PTSD and OCD related to trauma until I sought an outside second opinion. To them they saw EUPD as the sole problem I had/have. The psychotropic medications and therapies (DBT and brief CBT intervention – neither of which were delivered to me in a trauma-informed way) I was given were not only ineffective, they actually made me significantly worse and I suffered terrible side effects which badly affected my physical health. The DBT was so focused around mindfulness and for someone who had been through such severe trauma, really was not appropriate for me at the time. During psychiatric hospital admissions the noise and environment was so stressful and traumatic for me and made my risk levels escalate so much more eventually they decided not to hospitalise me anymore when I reached crisis point. Looking back, if I and services had been aware of my ASD, things should have been handled very differently and things would never have escalated the way they did on many occasions.
This EUPD misdiagnosis meant I went through extremely hard time getting recognition for my physical health as my doctors kept telling me it was all “psychological linked to my past traumas”. The CMHT saw me and my “disordered personality” as the very problem, in fact the only problem, and put barriers in my way to trying to get help with my physical problems when they kept telling me that I had “health anxiety” and was “putting myself through unnecessary tests when there wasn’t anything physically wrong with me”.
With the EDS remaining undiagnosed and unmanaged for so many years, my physical health very severely deteriorated and my daily quality of life became so badly affected by my gastrointestinal issues and severe tummy pains I struggled daily with feeling suicidal for many years, whilst healthcare services continued to blame my suicidality on what they thought was a “personality disorder” rather than properly acknowledge my physical health issues were so badly affecting my daily quality of life that was the reason I felt suicidal.
Despite EDS being a genetic condition it wasn’t diagnosed until I was 35. Last year I was on a liquid only diet and got very poorly with malnutrition (my Gastro team suggested a naso-jejunal feeding tube ) due to Median arcuate ligament syndrome (which is 2 cases in every 100,000 people) and compression of the celiac artery. Surgery is generally the only recognised treatment in the medical literature for MALS, but I delved so deep into researching how to help myself, I am now thriving and back to eating a normal diet. I’ve just been appointed as Patient Expert on the EDS International Consortium Diet and Nutrition Working Group.
For May EDS and HSD Walk ‘N’ Roll Awareness Challenge – have just walked or ran a total of 279.5 KM (173.7 miles) during the month of May! This is an especially amazing achievement because in 2018 I was housebound for four months as my chronic pain was so severe.
Over the years, I’ve done a fair amount of work in an “expert patient” role teaching medical students, been involved in patient advocacy and have achieved a number of publications (as a patient) including the BMJ last May.
These days there is such a buzz to “looking after your mental health” and everyone is always encouraged “reach out for help if you are struggling”, however if the wrong kind of help is given it can be so harmful and actually ruin your life. Trying to ask for help can in fact sometimes make things so much worse. I’ve seen first hand how interchangeably the terms “mental health”, “mental wellness” and “mental illness” are used even by mental health practitioners. To quote Krishnamoorthi “It is no measure of health to be well adjusted to a profoundly sick society”. These days, apart from the scars on my arms I really do look so well because of such stringent self care routines, that no one believes how much I struggle with my physical health on a daily basis.
Sadly, my “mental health”, self-harm and suicidality really would NEVER have got as bad as it did if I had received appropriate healthcare for the actual problems I have rather than how they were misinterpreted and misperceived by services. I struggled enough anyway due to the original trauma I went through, however to some extent my “mental health issues” were actually created by the community mental health team who severely worsened the level of difficulties I have experienced over the past seventeen years. I really did not need to have suffered anywhere near to the extent I have if I had received appropriate help for the problems I’ve always had. If I had never entered the mental healthcare system, I know that my “mental health problems” would never have escalated to anywhere near the severity they did. In fact, I would have been better off not to try and get help!
How I’ve been “cared” for by the mental health team has actually caused me far more harm than the original trauma itself. At times I said to them they were making things worse and what would happen if I just stopped going to appointments? They said “people like you (ie with an EUPD diagnosis) will generally need to be sectioned and detained, and possibly forced to take their medication against their choice) if they stop engaging and going to appointments”. I saw that I had no choice but to continue to go. At one point in an MDT they decided that me taking lithium was the last option they had available to offer me help. When I refused they said that meant that I didn’t want the chance of getting better if I refused the treatment on offer. I knew it wasn’t what I needed though or wasn’t suitable for me.
With my OCD, I very specifically asked for help but was denied the help because they misinterpreted my problems and without even assessing my symptoms the CMHT denied that I have OCD until I sought an outside second opinion and a thorough assessment. I’ve made several very severe suicide attempts (including being resuscitated and in intensive care last January as my gastrointestinal issues affected my daily life so severely). For so many years, with the EUPD diagnosis absolutely blighting my existence, I was struggling so badly on so many different levels and being so cruelly forced to try and survive in a world where various psychiatric misdiagnoses hampered my very existence so profoundly – looking back, no wonder at times I felt suicide was my only option. I no doubt have PTSD specifically from my healthcare interactions (as do many patients with Ehlers-Danlos syndrome), however the EUPD misdiagnosis compounded this even more. I had already grown up with severe trauma, but the way the CMHT misinterpreted me and who I am as a person only served to make me feel me that much more worthless, damaged, defective and broken than I already felt – I’ve got scars on my arms where I cut the words “worthless”, “mea culpa” (latin for “its my fault”) and “too complex” into my own skin, because of the way I was made to feel by the CMHT. I can categorically say that at times my existence and trying to survive in a world where I was so fundamentally misinterpreted very directly led to some of my attempts to end my life.
…. But to them, they just thought I have EUPD. My physical health issues started around aged 20, but it took until I was 35 and such a huge fight to get my EDS diagnosed. Undiagnosed and unmanaged my physical health took such a toll and on top of this I went through the exhaustion of fighting to get any recognition or help, whilst my doctors wrote things like “intelligent, despite a severe mental illness” in their clinic letters and criticised me for all the self taught learning I was doing to help myself, at the time telling me “there is nothing physically wrong with you Sarah and you just need to stop thinking there is and get the help you need from the mental health team”. However, these days my doctors now respect the huge progress I’ve made from my self-management and I think the fact I’m doing a masters degree has no doubt helped improve my credibility. It should not have had to be like that though!
The past two years I’ve worked so hard to learn how to help myself and turn my life around. I am now the happiest and healthiest I have ever been, despite severe gastrointestinal and bladder involvement with my EDS. I have found my purpose in my life and I am very focused and dedicated to learning about health and wellness. I’m very much in favour these days of a holistic mind-body approach and use time in nature, cold water exposure, vagus nerve stimulation, diet and nutrition support, yoga, breathwork and up and coming devices such as Red Light Therapy and PEMF. I have already started writing a book on healing trauma using floating (more commonly known as “sensory deprivation tanks”) and I hope to eventually use my MSc skills to conduct research into the clinical benefits of floating. I also love spending time with my two cats – I know how to communicate with them, even if I struggle spending time with other human beings. `
During my autism assessment I was asked about any “special interests”. I mentioned about delving deep into my self-taught learning to improve my health and the diagnostician commented that although its “sad I’ve got to aged 37 and only diagnosed now with ASD”, that despite the challenges I’ve faced and “how very clearly on the spectrum I am”, he acknowledged my focus as an impressive strength that I’ve used to my advantage in all my learning on how to help myself and how to improve my health problems the Ehlers-Danlos syndrome causes.
I didn’t even get a chance in my autism assessment to talk about my “special interests” I developed as soon as I got my EDS diagnosed two years about “the psychology of the difference a diagnosis makes” (including learning to self-manage); “the narratives patients use to tell their healthcare journeys” and “trauma caused by difficulties with the diagnostic journey” and my interest in “communications skills used in healthcare settings”. I think over the past four years I’ve even used all my healthcare interactions as a way to teach myself how to learn how to communicate better.
Autism in women and girls can present very different than in boys (and of course my trauma history complicates my case), but looking back over my life and how obvious it is that I am on the spectrum, its very worrying it was missed when you consider the vast number of, psychiatrists, psychologists and doctors I’ve seen over the past two decades. At times I remember the mental health team commenting on very specific things like how my facial expressions were completely inappropriate for what I was talking about, they picked up on my communication difficulties, my repetitive behaviour, how I picked out very specific words in conversations but often “missed the bigger picture”, my distinct inability to make eye contact. But to them – all this could be explained by a “personality disorder”. I also had delayed developmental milestones such as delayed speech as a young child.
I’ve hope you can see how I’ve managed to turn many severe (misunderstood or misdiagnosed) difficulties into my many strengths. I am incredibly resilient and I hope I can use my own experiences to inspire others in their own journey and personal struggles.
… Even if you can only afford a very small amount, I would very much appreciate any donations you can mange to help me fundraise for The National Autistic society by donating on https://www.justgiving.com/fundraising/sarah-clark158
Join me on Twitter: @sarah_clark_84
My Floating Website (still work in progress!): https://floatawaytrauma.com
Written by: Sarah Clark https://themighty.com/u/sarah84
