Finally, at the age of 52, I pursued exploring why I am different and why I am the way I am. My GP surgery is exceptional and nothing but supportive of me, as I have several chronic illnesses which I need support for intermittently. I see different doctors within the practice, and one had previously agreed that I presented as autistic and placed me on the waiting list for assessment. However, the waiting list is so LONG right now partially due to the virus creating backlog but mostly due to the sheer numbers of people needing assessment within the limited NHS accessibility for adult assessment. I was told the average wait would be 3 years.
Obviously, after so long I was desperate to just get on with the process and the idea of waiting 3 years was awful because I had finally decided to go ahead with the process and wanted it to happen NOW. I discussed this with my husband, and we were able to scrape together enough money to go privately for assessment. The forms were filled and returned later followed by the in-depth assessment via video consultation. I loathe video calls and don't skype or zoom and my husband, who was with me during my assessment said he wanted to pull me into view as only half my face was on camera for most of the appointment as I just wanted to hide whilst I spoke. Also, I found the whole process immensely overwhelming and cried during the assessment. This was because all aspects of my life were under the microscope, including parts which I found extremely difficult to discuss. Having completed trauma therapy, I thought I had a handle on my past, but obviously I had simply deluded myself on this score as the assessment clearly highlighted. It was clear that I had many autistic traits but also many traits born from trauma and the challenge was to define which were which - was I autistic, was my behaviour created through trauma or did I have both? A follow up appointment was made once the assessment was over to discuss my diagnosis as the assessor wanted to go away and marry together my questionnaires along with the information from our video assessment.
The following week felt like an eternity, I desperately wanted to know what my diagnosis was and get some kind of validation for why I am the way I am.
The follow-up call came and with sick anxiety I answered - my diagnosis is that I am most definitely autistic. I was then told that it is most likely that I delayed pushing for assessment due to gas lighting myself due to also have a second diagnosis of C-PTSD, which shaped my personality from a young age along with heavily masking and copying appropriate behaviours. My assessor asked if I would like any further help or support from them, it would have been wonderful, but our coffers were empty and we had to say thank you but no thank you. A letter is being written now detailing my diagnoses for me to keep and share with my health care providers should I choose to do so. I am going to be taking a copy to my GP because they have been very supportive of me and may be then able to refer me for further help via the NHS when I feel ready to accept it.
Autism Spectrum Disorder (ASD) is harder to diagnose in women than men, it seems that the system is geared up more towards diagnosing males, especially in younger years, many girls and young women slip through the cracks. This could be why so many women tend to be diagnosed with autism later in life - plus we tend to be master maskers! I suppose young males tend to be more easily identified by their behaviours when younger whilst girls tend to be able to copy behaviours and mask effectively enough to go undiagnosed.
Typically, females with autism will know that they are different but not necessarily understand why. Perhaps they are more involved in their interests than others or their interests are more specific and less mainstream. Often, as in my case, you tend to have a small social circle, perhaps only a couple of friends, not a social butterfly. I am only secure within my small, safe circle and need plenty of alone time to decompress. I also have some specific interests which I like to spend time focusing on, which is also a typical female trait. I have never followed fashion, always followed what feels comfortable and safe for me and doesn't make me stand out from the crowd, apart from my huge love in my teens for my red canvas jeans - which I lived in until they fell apart. -Blending in for me is very important, but so is individuality - which sounds like opposing views, but I try to be invisible whilst also enjoying different hair colours, piercings and tattoos. I don't wear make-up or lots of jewellery, I wear dark, mostly black clothing and pretty much always jeans, legging, jumpers and hoodies. I don't enjoy wearing dresses or skirts and only wear them for very special and specific occasions. The floaty feeling of wearing them makes me feel insecure - I feel safe in trousers.
Textures are often an issue and that is true for me - if it doesn't feel right against my skin, no matter how lovely, I won't wear it. The same is with food too - some textures feel weird and wrong in my mouth making me retch - doesn't matter if it tastes good, if the texture is wrong then I can't eat it.
I am gullible, easy to manipulate and so, especially in the past, I have been taken advantage of. My family are incredibly protective, and we are a tight unit who look out for and protect each other - so this happens far less so now. Apparently, this is a common female autistic trait.
One major factor that links many autistic women is our ability to mask incredibly convincingly. This is what often delays diagnosis for many years. We mimic how others behave and strive to keep our anxiety and emotions contained until we are alone. My tactic was to hide, in the loo or rooms away from the main gathering to have some time out - not always possible but I prefer to be on the outside looking in rather in the thick of it all, noting exits on arrival and having contingency plans for an early or swift exit.
Women can also appear to have different predominant characteristics or personality traits in different groups, this is because we tend to mimic and copy the characteristics and behaviours of those around us to fit in.
Masking to fit in comes at a cost and causes huge amount of emotional bottling up, stress and anxiety that needs to find a release at some point, somehow. Everyone decompresses differently. Some have emotional or angry meltdowns - I tend to curl up and cry and go quiet, wanting alone time and plenty of space and rest - lots of rest!
I couldn't through school, work and still now speak in public, or in large groups. Especially at school, I couldn't answer questions in class or read out loud. I would go sick when we had to do assemblies in front of the school, instead I would offer to write up the script on my own and give it to the group then not go to school on the day of assembly. If teachers asked me questions, I would go bright red and want to disappear and not be able to answer or mumble and get into trouble for not participating.
I have managed to hold down jobs but struggle being in any position of leadership - I prefer to work alone or in a very small group and be allowed to do my work uninterrupted. I left nursing once it got to the stage of doing ward rounds, drug rounds and large volumes of paperwork because it was too overwhelming - instead I preferred to have one to one patient care work. If health allowed, I would be a carer again but not as a nurse just as a care assistant and deal only with patients on a one-to-one basis.
I can give eye contact, but it is often either intermittent, or way too much! My daughters often get frustrated with me as they don't know who I'm talking to as I often speak without looking at anyone. Then, on the other end of the scale, they can get uncomfortable when I speak to them because I give too much intensive eye contact which leads them to ask me to look away and stop staring as it freaks them out.
The problem with many assessment criteria is that it focuses on the male traits with autism, which just don't fit with women with autism. It seems that now that is changing, but slowly- for my assessment I researched who to go to and found someone who understood how to assess women, especially adult women for autism. I have masking skills which led to being undiagnosed for so long. This means I can make eye contact (although I don't always get the duration of contact right) when talking to others outside of my home. Copying reactions to jokes and small talk and remembering typical phrases used - although I can never remember jokes to relay them in any conversations. General imitation of the group I may be in of non-verbal behaviours such as gestures or smiling etc.
Knowing why I struggle the way I do and why I find it difficult to make connections with others and why I become overstimulated and overwhelmed helps me to understand myself more.
What I hadn't expected from my assessment was the Developmental Trauma or CPTSD (Complex Post Traumatic Stress Disorder) diagnosis and I found it exceptionally hard to hear.
I know my upbringing was not considered normal and there was an awful lot that happened that I don't feel comfortable sharing, but it resulted in trauma that shaped my behaviour from a young age, and this affected my personality and perceptions.
CPTSD can lead to issues of anger and depression - for me it was depression which has been my companion since my teens and resulted in a (thankfully failed) suicide attempt when I was 18 years old. It can lead to dissociation, I have very little memory of my younger years, I simply look back and can't remember large portions of my life - it’s as if my mind has wiped it clean or hidden the memories deep beyond my reach. I have a very negative perception of myself which is something that I am working on and trying to readdress and change. It’s a monumental task to try and undo a lifetime of self-loathing but not impossible. Friendships and relationships have been challenging - I have been taken advantage of numerous times and now I tend to shy away from connecting with people and isolate myself, mostly only surrounding myself with family and very, very close friends.
I still love the person who caused the CPTSD, although they are now deceased. I recently went through trauma therapy, which focused on me forgiving them, so that I can then move forward and release the hate to work on myself.
One major step was to move away from my old faith, as my upbringing had strong Church of England links and find my peace within Paganism. Exploring witchcraft and other pagan practices has really helped me find some inner peace and a belief system that helps me and resonates with me, rather than a religion which was foisted upon me and didn't sit well with me, but I complied with because it was expected.
As I have grown older, I have become much more of a loner and more socially isolated, even a little agoraphobic. I don't like crowds and busy places and only go out to places which are familiar and safe.
What happened in my formative years has impacted my behaviours and personality in how I react to situations and on my memory - which is shocking.
Basically CPTSD comes about from childhood trauma, which can take a multitude of forms and not necessarily be visible. It can be physical, sexual, or verbal abuse, manipulation, or neglect, living within a toxic home, absent or disinterested parents or inconsistent parenting, abandonment, dangerous or unpredictable living environment. Not knowing any difference and living within the situation of abuse which a child cannot remove themselves from leads to trauma.
The trauma inflicted upon a child in whichever form can lead developmental trauma and neurological and psychological damage - which is what happened with me, and which led me to gaslighting myself for so many years and avoiding seeking help until recently.
Typical symptoms of CPTSD are usually stated as being.
- Shame and lack of self-worth - such as feeling ugly, too fat, too thin, stupid, and defective. This leads to negative and toxic inner narratives, and which may lead to suicide attempts (as in my case) but also in recurring self-harm.
- Feeling Powerless - for me this leads to me often becoming immensely overwhelmed and struggle with feeling vulnerable in a myriad of situations but unable to speak out for myself.
- Depression - I battle with episodes of deep depression, despair, and hopelessness. Thankfully I can recognise now when to enlist help either via talking therapies or medication.
- Hyper alert with fight or flight engaged - being hypervigilant and feeling a sense of doom and inexplicable fear due to unseen threats, finding it difficult to relax and often results in insomnia (hell yeah! oh for a night’s sleep), irritability and feeling on edge.
- Mood Swings - emotional responses that may be deemed inappropriate for the situation. I can become very agitated, snippy, and angry about things that seem out of context. Also, very sad and emotional leading to many tearful outbursts.
- A sense of not belonging and isolation - this is thought to be due to not having a secure parental bond and leads to developmental issues in connecting to yourself and others, loneliness, and isolation. This can manifest as needing close and intense contact or the opposite of removing oneself and isolating away from contact.
It's been a tumultuous week of assessment and diagnosis, but I feel validated, that I wasn't wrong in my belief that there was something underlying and that there are reasons for me being the way I am.
My GP has re-prescribed anti-depressants which I will start today, as I am struggling with a very low mood and have recognised my warning signs to seek help. I hope now to look towards finding my peace, learning how to heal my trauma as best I can, I have started the journey by forgiving perpetrators of my trauma and can now focus on my emotions, beliefs and behaviours and work to change them as much as is possible towards a more positive future.
I hope by sharing this post I can persuade you that it really isn't too late to seek answers. For me knowing I am the way I am is because of being autistic and suffering from the developmental trauma is helpful. I feel now with that knowledge I can start to make peace with myself and work towards controlling and calming my inner turmoil, beliefs, and behaviours. I will try not mask as much and give myself the time and space I need. To be proud of who I am and how far I have come - navigating 52 years undiagnosed was tough but I hope the future holds the peace and self-acceptance I have always strived for.
