Under my bed, in a clear plastic box with a plastic lid, I have a ton of self-help books. I have read many of them from cover to cover, hoping beyond hope that I could figure out how to ‘fix myself,’ to make myself more normal or at least to help me overcome my battles with Anxiety.
Some of those books came highly recommended from friends, family, or collegues who found them useful.
Although I was able to take some elements away from each of them, nothing really changed for me, they didn’t help in the way I wanted or expected them too and I never really understood why.
For most of my childhood and adult life I held on to the belief that there was something wrong with me or that I was broken in some way, the things everyone else appeared to find easy, I found really difficult. It felt like I had to try 10 x harder just to get anywhere or achieve anything.
In October 2020, at the grand old age of 40, it was suggested to me that I could be Autistic. I have been through so many emotions since then, surprisingly grief was one of them. Grief at the loss of never being the person I thought I could be, there was always the hope that once I overcame my Anxiety I would be normal, that life would become easier. Then there was the belief that I could overcome PTSD with the right therapy and time, that things would get better and my struggles would magically disappear. There was also the fact that I never really felt like I belonged and have spent so much of my life trying to fit in, trying to be what I thought ‘normal’ was. Now I realise there is no chance of that happening. Autism is permanent, the difficulties are also going to be permanent.
In November I completed an initial assessment and earned a place on the waiting list for a full assessment. I have read a huge amount about autistic women since then. Other than a close male relative who was diagnosed with Aspergers as a child, I don’t know anyone else who was Autistic, so I have joined a few groups on Facebook. I felt I needed to hear other peoples experiences.
I am not sure what the outcome of the assessment is going to be, but I am 90% certain I am Autistic. There have been many lightbulb moments, I now realise certain events or reactions were possibly down to autistic traits, but there is still a small element of doubt.
In recent weeks, with the help of therapy and the books I have read, I have come to realise that although Autism is permanent and the difficulties are quite possibly always going to be there, I have something I didn’t have before. I have a greater understanding of why I struggle, I can learn self-care and other coping strategies to deal with those difficulties.
Over the years I have had counselling and CBT in the hope of overcoming my struggles with Anxiety and Depression.
I recently attended a Social Anxiety group online and finished my 5th round of CBT.
The Social Anxiety group was something I would have normally declined doing, social anxiety meant I avoided groups of any sort when possible, but due to covid-19 normal CBT Sessions were postponed as at that time they were quite rightly concentrating on NHS staff. There was the option of the Social Anxiety group though, so I agreed to do it.
I am so glad I did.
They say there is a reason for everything and that it happens at the right time, if it wasn’t for covid-19, I would not have had the courage to do it. Perhaps courage isn’t the right word, because I was dreading it. Although it was all via video call (zoom), it still pushed me and I learnt a lot of interesting facts. I struggled with talking infront of people, even via video call. But, I really enjoyed it.
After the Social Anxiety group I was able to have some 1:1 therapy with the therapist who ran the group. Another thing that was fairly new was that this was only the second time I had agreed to a male therapist, the first time was a couple of years before, normally I insisted on a female therapist.
Perhaps if I hadn’t had this chance of therapy, the PTSD and Autism would never have been picked up and I would still be in the dark.
It has to be said, this time around, therapy was really difficult. Touching on the trauma I experienced as a child, which I haven’t really done much of before, was really painful.
I have learnt a lot from each round of CBT, but this last round has been by far the most beneficial and I have learnt a lot about myself from it.
With the help of therapy I realised I used worrying as a distraction from the memories of the trauma, while I was constantly worrying there was little room for anything else. It has become an ingrained habit, one I am still struggling to break.
I also became aware of the fact that I need to put things in place to work around the difficulties I experience.
I have to plan ahead, making sure I don’t have to many ‘events’ or activities happening in one day. A couple of weeks ago I had 2 appointments in one day, which I probably could of handled, it was the 3 unexpected, yet important, phone calls which happened in quick succession that totally threw me off balance. I was left feeling completely drained and very low.
I have to plan in ‘recovery’ time and self-care to try to keep a manageable balance. I certainly haven’t perfected it yet, as there are still plenty of times where I just break down or get tipped over the edge. I have to find a way of keeping the balance tilted to the low side, so that when the unexpected happens, I don’t get pushed over the edge.
Anxiety, Depression, PTSD or Autism
Every difficulty that I have experienced has always been blamed on Anxiety and Depression, mostly Anxiety. I spent years trying to treat and overcome the Anxiety, with medication and therapy, and although it helped it never cured the problem. I wonder if it was because I was trying to treat them as conditions rather than symptoms of something else.
A couple of years ago I came to the realisation that there was something more going on than just Anxiety and Depression. I just didn’t know what that was.
When I was diagnosed with PTSD during Therapy last year, I thought the nail had been well and truly hit on the head. I had obviously been struggling with it since childhood and it explained so much, from the disassociation to the hypervigilance. I thought there was light at the end of the tunnel, with the help of therapy I could overcome it, and there was a chance I could be ‘normal’.
Not long after the diagnosis of PTSD came the suggestion of Autism. At first I was sceptical, but after reading the information the therapist sent me and the book that he recommended, there was no denying the fact that it was a strong possibility.
I have done a huge amount of reading on the subject since then.
Looking back through my life I have tried to pinpoint and link certain events to Autism, but I think its safe to say that Autism and PTSD both had a role to play in every area, not just one or the other. Hypervigilance played havoc with sensory sensitivity.
Memory is a funny thing; I used to struggle to recall memories from my childhood, the good memories. I’m not sure if it was due to blocking out some of the Trauma memories or whether the Trauma memories took centre stage. But, since having therapy which delt with some of the trauma, other memories (happy memories) have started to playout in my mind.
When my Anxiety is high or I am experiencing high levels of stress my memory seems to fail me. Not being able to remember generates its own fear and Anxiety, especially when its something simple that I should be able to remember or when its important information.
I have recently learnt to ask for an email after important meetings or appointments, because as soon as it ends I will forget a lot of what has just been discussed or what I am meant to be doing.
I have always struggled with eye contact; I found it really difficult to do when I was a child, as an adult I still find it uncomfortable, but I think I have almost perfected the art of eye contact. I tend to focus on the mouth or the bridge of their nose when someone is talking. Having said that, there are people I feel comfortable enough with and have no issues with eye contact, others it can be half and half, then there are people I really have to force myself with to maintain any eye contact with. Social Anxiety got the blame for this one, in fact, Social Anxiety and Generalised Anxiety Disorder was blamed for pretty much everything.
There are times when I struggle to talk, especially when I am stressed, highly anxious or nervous. I may know what I want to say, but its almost as though the connection between my thoughts and my mouth breaks and I just can’t say it. Other times I find it hard to find the right words and it takes a huge amount of effort. A mental block, brain freeze, call it what you will. It certainly feels like there is a heavy block in my head and I have to really work hard at holding a conversation. It either comes out in a jumbled mess or I keep stopping and starting when I talk.
I tried to explain this to someone a few months back, but they just laughed and seemed to find it amusing, I guess it does sound rather childish but it causes me a fair few problems and I am self-conscious because of it. It can be really hard to live with. I feel worthless at times and as though people think badly of me because I find these things so difficult.
When I am less anxious or less stressed I have no problems at all. I can hold a conversation with friends and family that I am comfortable with.
Perhaps it is an Anxiety thing and down to worrying what people think or perhaps it is an Autism thing. I honestly don’t know.
School was pretty much a game of two halves; the first school was ok, I had a couple friends who lived down my road and a few others from the local estate. It was a small school and although I was shy, I coped with it ok and I quite liked being at school.
The second school was more difficult, most of my friends were divided between different classes, the children I did know in my class quickly made new friends. Instead of 1 class per year, there was now 4 classes per year, and the school was much larger. I found it difficult to make new friends. It wasn’t until near the end of the 2nd year that I fell into a friendship with a girl in my class when her friend changed schools. By the end of the 3rd year that friend moved away, so yet again I felt pretty much on my own. I must have been desperately unhappy during the last year at this school, I remember being put on prozac, but I hated taking them so didn’t remain on them for long. I dreaded going to school, but I couldn’t really explain what it was I found difficult, I know it made me feel awful but at that time I didn’t know why it made me feel awful.
The last school was a living nightmare!
I hated it, not only was it huge, it was a rabbit warren of corridors, very busy and i kept getting lost. The noise was sometimes deafening. I didn’t know what Anxiety was at that point, all I knew was that I felt awful every single day, I struggled with the amount of people and I struggled with lessons. Every morning I would wake with a sense of dread and butterflies in my stomach.
Social Anxiety ruled my life, it wasn’t until I was in my 20’s that I realised what Social Anxiety was though. At some point, during my time spent at this school, the trauma came out into the open. I believe I was 14 when I first mentioned it to the school nurse.
My school reports are a bit painful to read, several of the teachers stated that they wished I would talk to them, but I couldn’t as I didn’t know how. I took a lot of time off sick, but it wasn’t always a virus or a bug, it was from exhaustion and needing a break from feeling so “unwell” everyday.
Eventually, I spent less and less time in the classroom, choosing to hide out in the quiet of the medical room or library instead. The teachers stopped trying to make me attend, I point blank refused to do PE because 1. I was rubbish at it and 2. I would freeze whenever I had to do anything that made me “visable”.
The lessons I did attend were a battle, my heart was constantly racing and I often felt dizzy and sick. There were many times where I would just shutdown, resting my head on my crossed arms on the table, not taking in much of the lesson.
I lived for the holidays, spending time at home, recharging. A couple of nights before the return to school, I would begin to feel ill again, my Anxiety would start to increase.
I left school believing I was thick, I didnt get very high grades. It wasn’t until a few years ago when I needed to update my qualifications that I realised that actually academically I was alright, I just had a lot of missing information. I managed to gain the qualifications pretty quickly, well the English took longer as I kept putting of the oral exam, but I got there in the end.
I used to think it was down to the trauma I experienced as a young child and my lack of trust in the people. When I was diagnosed with PTSD, it was discussed that the struggles at school were down to PTSD, Dissacociation and Hypervigilance. Now add to that the suggestion of Autism; I am now convinced it was a combination of factors including sensory overload, they all had their own part to play.
I wonder if i had had the support and understanding that I needed at that time, would things have been different, but then perhaps not. Taking to Autistic parents who have autistic children, the help still isn’t there, not only that, the fight to get a diagnosis and support is hard work. There is virtually nothing out there, covid-19 had only made it harder.
Work hasn’t been very successful for me, I honestly never really understood why I struggled so much, apart from extreme anxiety, until now.
My first ‘proper’ job was in a large, busy, open planned office building. The work was fine, I really enjoyed the work and being in charge of ordering stationery for the whole business. I wasn’t a fan of covering reception and using the Tannoy system, but I did it, they even trusted me to go on there again after frying the switchboard when I panicked and knocked over a glass of water.
Then my role changed and I become a contracts administrator, which I still enjoyed, but it became more challenging and I clashed with my boss. I would cope with the noise and people for a short amount of time and but would then need time off. I would become physically ill and mentally exhausted. I found the ‘environment’ so difficult, the amount of time I could cope for between needing time off became shorter and shorter, after 2.5 years I couldn’t do it any more. I walked out.
I quickly found a factory job after that, in fact all my jobs since then have been factory jobs. It didn’t work out so well, it was loud and there were a lot of people, I felt awful the whole time I was there and I would go home exhausted. I got in trouble for the amount of time off I needed, some of that time I was signed off for periods of deep depression. My Anxiety was so high all the time, which made it hard to concentrate. I also found it difficult to get on with a couple of my colleagues, they thought they were being discreet with their criticism of me, but I could hear every word. I took it badly due to my already fragile Self-Esteem, so I ended up walking out after 2 years.
I have had Jobs which ranged from 6 months to 2 years. The last job I had lasted for 5 years, which was another loud factory job, but, there were only 3 of us working there. I was also the only female. I helped to run 10 machines, I found it OK, although it was a bit stressful at times when all the machines were running at the same time. I had the odd clash with my colleague, but it was the most successful job I have had, even though I still needed time off. I only left after my daughter was born, there was no option to go back as they had no part-time work available.
Now, I have a greater understanding of why I struggled so much, I believe a lot of it was down to the social and sensory difficulties I experience. The social side of things I still find it difficult, but I am better equipped at dealing with it. Having my daughter has expanded my comfort zone and taught me how to cope with difficult situations. I’ve had to deal with a lot of different doctors while she was under the hospital, which forced me to talk more. I am not as reactive as I once was, well unless I am stressed or under pressure, and I guess it depends on who you ask.
In the past I guess work was so difficult due to many factors, such as Anxiety, Depression, PTSD, sensory sensitivity and Autism, I guess it was set to fail. Hopefully with this knew knowledge and knowing what my difficulties are, I have more of a chance of succeeding.
The sensory stuff, well thats all new to me, I haven’t figured it all out yet. I need and want to find a part-time role, probably not in a loud factory environment though.
Becoming a Mum
There was a time I believed that I would never be a mum; I didn’t think it was fair to bring a child into my life when my mental health was as bad as it was, it wasn’t fair on the child. But, when I was 33 I had a baby girl.
When she was born I promised her that my difficulties would never have an impact on, I haven’t been able to keep that promise, all it achieved was to add extra pressure on me.
We have experienced many challenges together, but I love being a mum and wouldn’t change it for the world. I sometimes worry I let her down or that she misses out because of me. I am very fortunate to have sisters and nieces who will take her to the places she wants to go, when I can’t, due to my Anxiety. Although I do try to push past it and go to as many places/activities as I can, there are the odd occasions when I can’t, normally when I am stressed or my Anxiety has been triggered.
I did not realise a lot of events in my life were down to my reactions to sensory sensitivity. Looking through the lense of autism with the therapists help, it kind of makes sense that this is what I was experiencing along with the hypervigilance.
The sensory sensitivity I find the most difficult is Emotional Noise; before I had my daughter I would avoid most social events and activities. After my daughter was born I would participate in more social settings, although having said that baby and toddler groups were a bit to much, I tried many times to go to them and enjoy it, but after a while I gave up. By then she was old enough to go to Nursery, which I signed her up for because I knew it was important that she was able to socialise with other children.
I don’t like the heat very much, on hot sunny days I can’t stay outside for long, luckily we don’t get to many really hot days in the UK.
Sensitivity to Sound
When I was a young child I was terrified of the mail plane which would fly over my house each night. It was low and loud. I would lie in bed expecting its arrival, as soon as I could hear it in the distance my heart would start racing, I stayed in bed as long as I could. But, in the end the panic would become to much and I would jump out of bed and down the stairs to find my parents. Its silly thinking about it now, as nothing bad ever happened, the fear was real though and so intense that I just couldn’t deal with it.
I still hate planes flying over, but I think I have that under control now lol.
Sometimes it appears I can hear things that others can’t, I can hear conversations from a fair distance away which often catches people off guard. Other times someone can be stood right next to me and I don’t hear a word they are saying and will have to get them to repeat what they have said.
I seem to notice every sound at once, again its only recently that I understood how this was affecting me, if there is to much noise it will trigger my Anxiety. If there is too many people talking in one room, I really struggle to hear or focus on the person talking to me.
Sensitivity to Smell
Strong scents are a bit a of problem, I used to assume I just had a strong sense of smell, but now I think its a bit more than that. I like the smell of Lavender, but I can’t use it because its to strong and leaves me with a headache and feeling sick. I can’t wear perfume for the same reason.
I remember a time when I was on public transport, a woman got on who was wearing a strong perfume, it made me feel so ill that I had to get off a couple of stops later, I had to wait for the next bus so I could continue my journey.
Not only that, but I seem to be able to smell scents like Gas or Burning long before anyone else can smell them.
Sensitivity to Emotional Noise
One of the biggest myths around Autism is that Autistic people don’t experience empathy. I can assure you they do.
In fact it is possible that it is the complete opposite, perhaps Autistic people have to much empathy and feel their own emotions so deeply it can feel like they are drowning, which is one of the reasons Social situations are difficult and overwhelming. For me I feel as though I can feel the emotions of others strongly, the difficulties seem to arise when the emotion I pick up from them doesn’t match their expression or body language.
Busy places are a nightmare, to many different emotions at once, it becomes overwhelming and a bit confusing. I take the emotions on board and trying to work out which belonged to me and which belonged to others becomes difficult. Emotional noise is hard to deal with.
Sensitivity to pain
Pain has always been a huge trigger for my Anxiety, more so after my dad and brother died from heartattacks. I developed Health Anxiety, and although in recent years the Health Anxiety has subsided, pain is still a massive trigger.
I experience a lot of tension, in my shoulders, head and neck, which often leads to a significant amount of pain. I also experience pain in my hands, arms and legs for a period of time, it will go after a few weeks, only to return again later.
Anxiety also brings with it a certain amount of pain, so it becomes a vicious cycle of pain, Anxiety, more pain and more Anxiety. It can be hard to break the cycle.
I wish I could turn off some of my senses at times, instead of my brain feeling the constant need to focus on every sound, every smell, every sensation all at once and analyse it. Which causes my Anxiety to kick off and a strong need to escape.
I often find that I feel mentally and physically exhausted; my arms, shoulders and legs hurt and feel weak, the kind of weakness you experience with a fever or the flu. Due to the PTSD sleep is difficult, I find I wake suddenly from a dream that I can’t remember.
Social settings seem to completely drain my energy; I assume its because when I am around people I am always on my guard, my Anxiety is high, my body is tense and I have to work hard to make conversation.
I have to plan in ‘recovery days’, a day when I plan to stay at home and do very little, just to get over the activities of the day before. When I was trying to gain my maths and English qualification a few years ago, I had to go to a training centre, after spending all day there around a group of people I didn’t know, by the time I got home I was completely drained and my head was buzzing. I could not think straight, let alone focus on doing anything. It took a couple days of doing very little and staying at home to start to get over it, but by then I would have to go back and do it again.
The exhaustion I felt would cause me to experience low mood and depression would creep in.
Since October when Autisim was first mentioned I have looked back through my life trying to see if there were signs.
I don’t think I had many Meltdowns as such, but I believe there where plenty of shutdowns.
My dad has a large family; I have many memories as a small child of heading off to London to another family party or wedding. I used to love seeing my cousins, there were a lot of us, but I could only tolerate the loud atmosphere for so long, eventually I would feel so tired that I would shut myself off in a bedroom or sit on the stairs alone.
There were times when I was at the last school when I was so stressed out, I would go and sit down in the medical room, talking was not possible and I would shut myself off.
Sometimes I would just zone out. I could be sat in a room full of people, but lose myself in the thoughts and image reel playing in my mind. I wouldn’t actually physically see anything in the room, I also wouldn’t hear anything, for all I knew someone could be stood directly in front of me saying my name and I would not know. Until they touched me that is, then I would be brought back down to earth. There have been times I have been accused of staring at someone or listening in on a conversation when I “zone out”, but I honestly don’t see them or hear them at all.
Anxiety is pretty much a constant in my life, it never goes away.
Depression or low mood will come and go, there are also times when I will experience extreme episodes of Depression, where self-harm and suicidal thoughts will become regular. I have been thinking about this a lot recently and I wonder if these episodes are what they call burnout.
I reached this point a little while ago, where I just couldn’t manage and needed some help and support. It started when my daughter was referred to the hospital, the intense worry about the possibility that there could be something seriously wrong and the pressure of the appointments took its toll. The PTSD stepped it up a gear, although i didn’t know that was what it was at the time. I had zero confidence in my own abilities and I was really struggling, every morning I would wake with an intense feeling of dread, disappointment and fear, its the worst it has ever been.
Therapy has helped, but I am still struggling to get out of it. My daughter needed some support. I needed help to support my daughter with her worrying, her fears, and stomach migraines, I needed help with trying to communicate to the school because at that time I didn’t know how too. It felt like a fight to get the support, then it was a fight to keep it, but it seems we were not entitled to it, and it was taken away again.
When experiencing burnout, I feel I need a bit of support, managing certain aspects of daily life become really difficult and i feel I fail at being a mum. When it passes, being a mum to my daughter is rewarding and amazing and all my doubts melt away. My way of parenting may be a little different, and I may have a different perspective, but autism has is bonuses.
There does seem to be a bit of a pattern, looking back over my life it would appear that I manage for so long, but the effort it takes to do it all and to keep my head above water takes its toll. For a while I will sink into a deep depression, self-harm and suicidal thoughts will creep in and I struggle to cope. Eventually I am able to build myself up again and I will come out of it. For a while things will be easier and I can cope with all the day to day stuff despite the fact it takes a huge amount of energy and effort not to avoid the triggers for Anxiety/PTSD. I manage until it becomes unmanageable once again and the cycle of Burnout and Depression begins.
I need to find a way of stopping this from happening, I need to learn what my limits are. It would be so much easier if there was a manual on how to overcome the difficulties that arise from Autism and PTSD. I’m the type of person that likes to know how things work, the brain and mental health is no different. I have read books and articles on the subject, I have even done an online course on Mental Health and im currently doing my second.
I’m still struggling to get my head around the Autism; some days I feel like I am fine with it and accept it, other days………….. not so much.
I don’t have all the answers, its a learning process, a journey. Its all very new and I still have a lot to learn. For instance, now I know what causes some of my reactions, I need to find a way of stopping some of those reactions.
Sometimes I wonder what my life would have been like if I had known about Autism sooner, would I have struggled as much as I have, would I have achieved the things I have and would I have become a mum. I finally feel settled in my life, I just need to learn to deal with any difficulties that arise.
One thing I have learnt in the last few months, yes I experience many difficulties and struggle with my mental health, but there are so many positives as well. I notice things that others don’t and my biggest achievement of all – I have survived. Despite not knowing what it was that I was dealing with, without the support and despite the trauma I experienced, im still here and I have made it through, perhaps with a few scars.
I wanted a place to write everything down, just so I am able to get things straight in my own mind. It’s not the first time I have tried, in fact I have tried many times, but my understanding and perspective has changed somewhat.