Broken – Worthless – Unlikeable – A Failing Human Being – Stupid – Weird – Different – Strange –
Most people don’t get it, they have no idea what autism is or what it feels like, but it isn’t really their fault. In all honesty, I was one of these people
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Receiving an Autism Diagnosis later in life can leave you feeling as though you have lived a life of two halves, before diagnosis and after diagnosis. I was 41 when I received my diagnosis and since then there have been many lightbulb moments and lots of looking back over my life. I sometimes wonder if I had known I was autistic sooner would my life look different, would my mental health have had less of an impact on it, and would my life look more like everyone else’s.
I believe being autistic made me vulnerable as a child, not only was I naive and easily led, I couldn’t read the intentions of others and I didn’t have the skills to explain or communicate effectively. Those things made me an easy target for the men who abused me. I didn’t realise until I was in my 40s, but that experience left me experiencing PTSD as a child and throughout adulthood.
Living with autism in this fast-paced, largely neurotypical world, is difficult. I would even go as far as saying it is even more difficult when you don’t know that you are autistic. For me, it led to me believing I was broken and it had a significant impact on my mental health. After years of trying to fit in with my peers and failing badly, I came to the conclusion I was defective, I mean kids can be brutal and will let you know that they think you are weird and that you are not like them. It comes at an age when being the same is so so important. At the age of 11, I was really struggling and my doctor prescribed Prozac, which I didn’t take for very long because not only was it another thing that made me different, but it made me feel quite poorly. At the age of 11 – 12, I bought my first Self-Help book – Feel the Fear and Do It Anyway, in an effort to fix myself. That book was the first of many, in fact, I have a large plastic storage box under my bed which is full of self-help books. I am still buying books, but the titles have changed to include the words “autism” and “Neurodivergent”, because I need to know everything that I can. When you are handed the piece of paper with your diagnosis, that’s it, there is very little explanation or support, and you are left to get on with it and find out what autism means for you.
After my diagnosis, I realised that some of the times when I was diagnosed with Depression, it was, in fact, Autistic Burnout. The first time was during my school years, I was really struggling with the classroom environment and was experiencing constant Anxiety, but I didn’t understand why. Now I do, sensory processing disorder was and still is a major trigger for anxiety, so I was frequently experiencing sensory overwhelm while at school. I lived for the weekends and school holidays, every Sunday night before returning to school I was in turmoil and filled with dread. Sometimes, I just couldn’t go to school, physically walking out of the door to get the bus was impossible and caused the physical symptoms of anxiety. When I was at school, I was often found in the Library or Medical Room because the classroom was just too much for me, and I either didn’t turn up to lesson at all or I would end up walking out. As an autistic person there was often a strong need to escape, but being undiagnosed I didn’t know why I felt that way and there was no controlling it. I stopped going to PE altogether, after realising no amount of detentions or line writing made any difference, they stopped trying to make me go. In all honesty, the punishments for not going were far easier to contend with than attending the lesson. The lessons were brutal from start to finish, having to change in front of everyone, preforming in front of my peers in activities I was rubbish at, being humiliated by the teacher, being shouted at, the screaming and cheering, nope, writing lines and going to detention was far easier to deal with than the anxiety and embarrassment generated by taking part.
Work was just as difficult as school, looking back, the environments I worked in were not suitable for an autistic person, at least an undiagnosed autistic person. Maybe had I known, things might have been different, I may have understood why my anxiety was at a constant high and maybe I could have done something about it. In reality, work has not been a positive experience for me so far. Most of my Jobs have been in factories, except for one office job, they were loud and quite often smelly places. In a couple of workplaces I ran large plastic moulding machines, in their nature, that meant they were loud and had the strong (disgusting) smell of melted plastic. I was in a constant state of high anxiety, meaning cognitive function was a lot lower than it would have been, so dealing with people was difficult. It meant I often reacted to things and took things personally rather than being able to think them through, reacting rather than acting. Communication differences do not help, it often led to being misunderstood, neurotypicals tend to read between the lines even when there aren’t any. It means they think you mean one thing, when that wasn’t even what you said. In a couple of the factories I worked in, I was bullied by work colleagues, one girl would set me up for things, and I would fall for it nearly every single time, apparently it was a joke but I didn’t find it funny. She would also speak very loudly, behind my back. while in some workplaces I was diagnosed with depression and signed off for several weeks at a time, I am certain those times were Autistic Burnout. Eventually, it would become too much and the need to escape would be so strong, I would end up walking out. I have had jobs that lasted 3 months, 6 months, and 2 years, there was one job that lasted the longest, it was still in a loud factory, but I was able to wear ear defenders for safety reasons, also, there were only 3 of us that worked there. I was often left alone to run up to 10 machines and inspect the products produced. Everytime employment failed, I would beat myself up over it and would feel a failure, why couldn’t I cope with it when everyone else could. It had a huge impact on my confidence, self-esteem, and mental health every single time.
Now I am diagnosed autistic, maybe things will be different, in some workplaces I would be entitled to ask for sensory breaks which would reduce my anxiety levels and sensory overwhelm. At least that would be what I would hope for, from time spent in autism support groups on Facebook, in some workplaces this does not happen. There are so many people being turned down from jobs and experiencing bullying and being “fired” for reasons linked to their autism. Just because you are entitled to something, it doesn’t necessarily mean you will get it.
The first half of my life was me trying to survive and existing, now that I know I am autistic, I am hoping the second half of my life will consist of me living, living it to the full and understanding myself better. I feel that what I have been through hasn’t been for nothing, it has enabled me to help others, I would love to continue to do that, I would love it if I could turn that into a career or job role, if not I am happy to do it in as a volunteer or advocate.
The Mental Health and Suicide statistics for Autistic people makes for scary reading. But, I understand why it is so high, life as an autistic person is hard, extremely hard at times, and I would be lying if I said the thoughts of suicide hadn’t crossed my mind.When I started my blog on here, and my pages on Facebook and Instagram, I had not long been diagnosed. I wanted to share with people what it was like to be autistic and spread awareness, I wanted people to hear me. The funny thing is, and what I now understand now, is people only hear what they want to hear, you can be screaming at the top of your lungs and people still won’t hear you unless they are ready too.
I am tired of shouting, I honestly don’t have it in me to do it anymore, because in all honesty, no one is listening.
When I first started this, I was battling with my daughters first school, her teachers were not listening to me or taking me seriously. I needed to tell them about her stomach migraines, her anxiety and about a medical issue. I tried to ask for support, for someone to advocate for us, her teacher never got back to me. So, I contacted Early Help, who turned out to be another group of people who didn’t hear me. For me, it ruined the time she spent there, I felt like I was no longer welcome, and I missed out on seeing her be Narrator in the school play. It felt like I was banging my head on a brick wall.
Not being heard or taken seriously hurts, it made me feel worthless and stupid. It made me feel like I was failing as a mum. It is something I have had to deal with most of my life, I used to think it was due to appearing anxious, but I now think its partly that and partly being autistic. Being different. When I was 13 I disclosed about having been abused, but, they didn’t realise it was serious because I didnt react the way they expected. I couldn’t cry. So it was ignored for months.
There is just so much pressure, so many things to remember, but my memory is shot to pieces due to brain fog. I struggle to speak because despite searching my brain, the words I need are out of reach, I just don’t seem to be able to find them.
I know for a fact I am experiencing Autistic Burnout at present and my mental health is at rock bottom. It doesn’t help that I am always in pain and exhausted all of the time. I am shouting loud, but not being heard. I am drowning, but trying to keep my head above water for my daughters sake.
Do you find that you have a strong need to explain yourself to others?
I do!!!
Personally, I think its down to negative experiences with communication differences and the misunderstandings that can cause.
Growing up, and even in adulthood, I have been called rude or I have been accused of causing offence to someone, yet it was never intended. I thought I was just having a conversation.
It was one of the reasons I developed Social Anxiety, talking to people filled me with fear, so, during my tweens and teens I became very quiet and only spoke to certain people.
I am so aware that a simple conversation can be misinterpreted, and someone (often a neurotypical) would take offence from it or feel hurt. Because of this I started to explain myself and what I mean in so much depth that there was no chance of that happening.
In the past, when I have had an important phone call (especially if its connected to my child) and the call ended, I would over analyse it, I have often sent an email to explain what I meant so there was no chance of a misunderstanding. Then I will worry about that email, about sounding stupid, and its sad to say I have been known to send another email. Its a horrible and time consuming cycle to get stuck in. Sometimes, I will as for an email to cover what we spoke about, part of it is because I get anxious on the phone and will forget some of it, and part of it is so I can see that I wasn’t misunderstood.
Its worse with people ‘in power’, in authority. Its worse when my anxiety is high and I am worrying what people think, I have added trauma that seems to make it even worse. As a child I was told no-one will like me and no-one will believe me, those words have stayed with me, they became my beliefs and some beliefs are hard to break even when evidence proves otherwise. Those words made me worry what people think of me, I work hard at trying to be likeable, and never making a mistake. Which is impossible.
It became a habit that I have struggled to stop, I am aware I do it, I am aware the neurotypical person gets frustrated by it. Other neurodiverse people understand more and are less likely to be frustrated by it, because they know how hard it can be, and some do it themselves.
Some people, people who are honest and I know will tell me, I don’t do any of this with and have no problem making conversation with. Often, these are other neurodiverse people, some are neurotypicals that I have known a very long time.
I am working on it, I try not to over-explain, but its hard to change it when you have been doing it so long. It can be detrimental to your mental health, because it makes you question everything.
Something dawned on me yesterday; I have been experiencing a lot of pain in my legs and arms again recently, in fact my legs are swollen and the skin is so painful to touch. My partner thought I was exaggerating when I told him about it and said how difficult walking was becoming, that was until my legs, feet and ankles started to become swollen.
It made me think about all the times as a child I was told I was being a drama queen or that I was exaggerating the symptoms. With the diagnosis of autism came the realisation that I (and my daughter) experience pain differently, things that shouldn’t hurt are extremely painful and in some cases, things that should hurt a great deal don’t hurt much at all.
In my late teens and early 20’s, I was hooked up to a 24hr blood pressure machine and a 24hr heart trace machine, In fact I had to even wear them to work, now that was fun. The reason I had to wear them was that I was experiencing heart palpitations, chest pain and dizziness, the tests didn’t pick anything up and after months of experiencing it, it was just put down to anxiety. Everything gets put down as anxiety.
For years I have been experiencing random pains and symptoms that had no other explanation other than Anxiety, I gave up mentioning it to the doctor in the end, as I did end up feeling as though I was a Drama Queen. I mean if you are told it enough times, you end up believing it don’t you. But, yesterday, I saw a post about a couple of conditions which are associated with Autism, the symptoms I have experienced all of these years actually tie in with these conditions. Don’t get me wrong, I am not definitely saying they are the cause, but it would make sense.
Mental Health Conditions do have a lot of physical symptoms, anxiety especially, but I remember being so frustrated that every time I went to the doctors with something it was nearly always put down to anxiety, or more recently PTSD. Sometimes the pain is so intense, that it knocks me off my feet.
I remember when I was 13, I had to keep a record of the symptoms I was experiencing. I would stand up at the end of the lesson and I would go dizzy and my eye sight would go black. In the end they had no Idea what was causing it and you guessed it, it was apparently an anxiety thing.
It made me wonder whether I was imagining everything, when you are doubted and told your a drama queen it makes you question your own experience.
My diagnosis is still giving me the answers to so many things, my skin is so sensitive to touch. If anyone pokes me in the leg or my shoulders and it really hurts. It really hurts.
I used to feel guilty about the school holidays; I would see all the photos posted on Facebook and Instagram of how everyone else was spending their time, the number of days out, play dates, and the adventures they were all having. I tried hard to fit lots in, but our holidays looked nothing like theirs, and I felt an immense sense of guilt and as though I was letting my daughter down.
That is until the covid lockdowns and my own diagnosis taught me something else.
I realised those types of holidays, ones filled to the brim with play dates, clubs, days out, and days spent away from home, just didn’t work for us. All it achieved was burnout, stress, and exhaustion. We needed a slower-paced existence, days spent at home recovering from the school term before we even considered days out, and then we would only spend our energy on 2 or 3 (at max 4) days a week where went out or met up with friends.
My daughter needs that valuable time spent at home, as do I, where we can just chill and be ourselves. Going out often means masking, which is energy-consuming, days out often mean loud and crowded spaces, which are hard work. Don’t get me wrong, we enjoy days out, but we have to plan our time wisely. If I fit too much in, by the time the holidays end we are both grumpy, snappy, and exhausted.
Looking back to my own childhood, school holidays were often spent at home, it seemed to be a normal and natural thing in my family. I would play out in the road with friends, or we were in each other’s gardens/houses, I would see some of my cousins here and there, my cousin from London would come and stay for a week in the summer, and days out were only once or twice a week if at all. I lived for the holidays as a child, I found school extremely difficult, so the holidays were my freedom.
Were other’s childhoods not spent this way?
When did the constant days out and holidays away from home become a thing?
I don’t ask it lightly, I am genuinely intrigued, as I don’t know. Perhaps my childhood was this way because that’s how it was in my family, suitable for children who were autistic. Since my diagnosis, I realise there are quite a few autistic people in my extended family. I don’t think they are aware of it, in fact, I know they aren’t. Perhaps in my family, my childhood was normal because in the past that’s how others had been bought up and it carried on through the generations. Or, was that the way it was for everyone back then. There was no window (facebook) to witness how others holidays were spent back then.
I no longer feel the guilt from seeing the photos our friends’ share of their holidays, I am glad they are having a great time, but I know it doesn’t work for us. The way our school holidays look is perfect for us, it is what we need to unwind from school, and what we need is to spend time as ourselves, to have DVD and pajama days, to chill in the quiet of the garden, to spend time alone not being rushed, to limit the sensory overload and anxiety from being away from home.
We will spend a day at the park with certain friends, we will spend time at my daughters cousins house or at my sister’s house as they are places we can be ourselves, my daughter is free to ask her random questions and have discussions without the fear of being judged by this set of people. These people who are important to us. We don’t have to be something that we are not with them.
A slow-paced, autism-friendly, school holiday used to prepare me for the new school term, just as much as it does for my daughter now. It built up my social battery and energy levels, it reduced burnout, and it gave me the freedom to be me. The school holidays are just as beneficial now for me and my daughter.
It is well known that autistic people struggle with communication and social interaction, it is one of the many traits of an Autism Spectrum Condition, but how the traits and difficulties affect an autistic person will be as individual and varied as they are. The amount of support they will need will also vary from […]
Autism – Communication and Social Interaction — Me, my child, and the Autism Spectrum
How many labels have you been given throughout your life?
This was one of mine, I was forever hearing it from family, from school, from people that really didn’t know me at all. So much so I was lead to believe it was a bad thing, I started apologising for being too sensitive, and then I began to hide it. I believed it was a side of me that no-one wanted to see.
When I disclosed the sexual abuse I had been through, I didn’t cry, I didn’t know how. Because I showed no emotion, it was many months before the seriousness of it was realised and someone finally heard me.
People make so many assumptions, they label me to, but they don’t know me. They have no idea how difficult it is for me to talk surrounded by people, how groups of people trigger hypervigilance and anxiety. So I avoid It when possible. You see, its my brain and bodys way of protecting me, protecting me from being hurt again. I used to resent it and feel a failure because of it. But, I have learnt recently to appreciate it and thank it for keeping me as safe as it can. I thank the Trauma response.
I spent much of my teenage years, my 20’s and my 30’s living with PTSD, but it wasn’t until someone finally heard me and diagnosed me with it until the age of 40.
By then I was burnt out; my daughter turning the age I was when the abuse happened was a massive trigger, I was exhausted and I believed I was broken. I had always believed I was a broken human being, as I was very different to most of my peers, but now I was completely broken. I had to seek help, but obviously I didn’t know at that point what I was seeking help for as I had internalised everything. So I sought help for Social Anxiety.
It was that Therapist, who was obviously good at his job, he saw through it all, and he not only listened but he actually heard me. He diagnosed the PTSD, then a few weeks later came the bombshell, he thought I could be Autistic. I had hidden so much of myself growing up, to keep myself safe and because I felt so guilty for being highly sensitive, I didn’t really know who I was anymore. I was bits and pieces of the people around me, I had watched and I had observed others and used what I thought people wanted to see. I built my mask from other people.
When I reached 40 I was burnt out, like so many undiagnosed autistic women do, I could no longer mask, and the PTSD and Autistic traits became more apparent which lead to the diagnoses.
Trauma Therapy has taught me a lot.
I realise sensitive isn’t a bad thing to be, far from it. I used to think I was weak because of it, but It is one of my strengths I feel. I now know I have great strength, a strength that I never saw before, a strength that allowed me to survive.
Being sensitive, anxious and autistic, people don’t hear you, they don’t take you seriously. All they see is the trauma response and they can’t be bothered to look any further. I fight my daughters corner everyday, but people see the anxiety and automatically assume I have no idea what I am talking about. But, I know more than people realise, I know my child better than anyone. I know her struggles at school, because I have also lived them myself. People don’t hear me though, my child is also highly sensitive and needs support with school, I need someone to be our voice, to do the talking for us. They can’t ignore them, can they? They can’t ignore their emails surely?
My daughter is an observer, she will wait and watch, before feeling comfortable to join in. She doesn’t struggle as much with eye contact as I do. I don’t want her to feel she has to mask her way through life, I want he to be able to be herself. She is a wonderful human being.
Yes my child is sensitive, she cries when she comes across an animal that has died, she cries when the witch falls from the tower in the Disney film Tangled, she cries during pantomimes, I have to be so careful with what she sees and what she watches. She checks on our elderly neighbours, she loves with all her heart. Do I want that to change, no, but I need help to build her resilience and help to manage those big emotions. I am still learning how to manage my own.
There are worst things to be than too sensitive, Yes I feel things deeply, but being sensitive allows me to feel other peoples emotions like my own. It gives me empathy. I am not only sensitive when it comes to emotions, I am sensitive to noise, I am sensitive to smell and to touch. I am sensitive to bright light. There are only certain products I can use as I am sensitive to chemicals.
I used to feel I had to apologise and change who I was for other people, but I no longer feel the need to apologise for being sensitive. I know longer worry what people think like I used to.
Recently, I have done a lot of thinking about Autism and the different neurodivergent conditions; I guess that is normal after receiving a diagnosis. I have sort of come up with a theory, I have no idea if it has been touched on before as I have not researched it.
Back in the good old caveman days, when survival was uncertain, I believe we needed the different neurotypes to ensure the human race survived. Much like an Ant Colony, each Ant is born into a role, a role that seems to come naturally to them. You have the different types of worker ants or soldier ants, you have the male and female winged ants and a Queen, each one has I different job or role to play. The same can be said about Bees in a hive.
Who is to say that the same can not be said for humans, each neurotype has a job to do, for instance Neurotypicals being the social communicators that they are, ensured there were offspring to carry on the human race, perhaps the autistic thinking brain played the role of inventions and problem solving to ensure we could develop tools to survive, and so on. We are born naturally into our role for that neurotype, much like the ant worker that instinctively knows its role. Back then it wasn’t so much a disability and was a necessity.
The problems arose when the world became more neurotypical friendly and survival isn’t so much an issue these days, as we are top of the food chain. We don’t need our hyper senses to survive, which has made them become a problem and disabling, in todays social society. Our roles in survival have become redundant in society as it is now. We are more alone than in a colony and our roles have become disabled by a neurotypical world.
Anyway, perhaps I am over thinking and over analysing things, us autistic people are good at that.
You would think being able to sleep would be a good thing; there was a time I was envious of my partner, 3 minutes after getting into bed he was out for the count. Yet, for me sleep was difficult, I wasn’t able to just sleep, my brain didn’t know how to switch off. It took forever to get to sleep. Some days the tiredness was awful.
But, then It all changed I started to sleep more, but it didn’t seem to matter how much sleep I got, I was always exhausted. As soon as I sat down on the Sofa, I would fall into a deep sleep and it was difficult for my family to wake me up. The dreams I experienced where crazy. It turned out that I had an underactive thyroid, with medication it improved and my thyroid levels levelled out.
In February I caught covid, I didn’t have that bad a time with it, not compared to other people I knew. I had a few symptoms and a cough, but I have experienced worse colds than that. Since overcoming covid, the the exhaustion has gradually returned and is worse than before. I keep falling to sleep during the day, despite sleeping at night, but its not a restful sleep and I wake up just as exhausted as I was when I fell to sleep.
I hate feeling like this, my energy levels are zero, I am experiencing aches and weakness in my arms and legs, my legs go like jelly on the school run. After being late to school pick up last week because of it, I am spoke to the GP, and am now booked in for a blood test in 2 weeks time. He is wondering whether covid made my thyroid condition worse or knocked everything out of sync. Going to check vitamin levels and diabetes as well, just in case. If its not any of those things, then I have no idea what it is.
Although, I am having trauma counselling, went through the Autism Assessment, and have started another course, so perhaps that could be having an impact on energy levels too. But, im not sure, I am just fed up of feeling like this and falling to sleep as soon as I sit down or lie down.
I know exercise may help, but its a catch 22, I need the energy to be able to go for a walk I the first place.
This is the reason I have been so quiet on here, I haven’t been able to do to much reading and writing at present. Which is having an impact on my mood as writing is my way of processing and dealing with things. I apologise for being quiet, hopefully after the blood test I will have some answers and its something I can do something about. Even if its taking vitamin supplements or something. I am willing to do anything at this point as the pain and exhaustion is becoming to much to cope with.
I hope you are well, I will be back as soon as I am able.
Anna x
Autism and Mental Health 