Tag: neurodiversity
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If memory serves me right, I was about 12 when I began to self-harm. I was in Year 7 or 8. My friend had moved to a new school and I found myself alone at school a lot of the time. I have always struggled to fit in, not fitting in made me accept attention from the first person that gave it which resulted in being sexually abused. I had stopped going to lunch once my friend left, I could no longer cope with the dinner hall especially alone. I experienced high levels of anxiety a lot of the time, which I struggled to get under control. One day I became so overwhelmed with school, the teasing, the not being good enough and the isolation that I lashed out and punched a wall. The instant pain was agony, but it also created an instant calmness within my body and mind. The bruise that appeared afterwards kept that feeling going, and when ever I felt anxious I would pinch the bruised skin.
The shame from self-harming made me feel awful at times, but it turned into my go to method of controlling how I was feeling. Everytime I became anxious (or overwhelmed as I now know it to be), I would bruise my arm and hand with any tool I had at my disposal. Sometimes that would be punching a wall, othertimes in would be a ruler or a piece of wood. Most of the time, especially in the winter months, I was able to keep it hidden by wearing long sleeves. In summer I would just keep wearing long sleeve school shirts and jumpers when out of school.
When I moved up schools anxiety attacks and overwhelm stepped up a gear, I was so stressed all of the time. This meant self-harming also increased, both in how often and how bad, I ended up with lots of trips to Accident and Emergency. I would be bandaged up, put in a sling or in a soft cast depending on the injury. After a while the hospital started asking questions and so did the school nurse, but I didn’t have the ability to disclose why I was doing it and if im honest I wasn’t really sure. All I know is how awful I felt, my emotions were swirling round like a tornado, the pressure was so intense and the only thing that would calm my mind and body was the pain from self-harming and the release was instant.
In year 9 I started to scratch or cut my skin, it seemed to have a different affect on me than bruising. It was less noticeable and easier to hide. It helped me to manage how I was feeling and helped me to cope with school. I still felt an incredible amount of shame, I hated myself for doing it but I didn’t know what else to do. I was in crisis.
No amount of punishment, ridicule or telling off from teachers, parents, or medical staff, for self-harming would stop me from doing it. It was the only bit of control I had at the time. The release it gave me became addictive.
Once I left school the frequency of self-harming became less, although it was still my go to coping strategy when things became really bad, but I had acquired other methods of managing how I felt. Such us journal writing, counselling, distraction, or alcohol, I had more ability in describing how I was feeling. That said I stopped drinking alcohol at 25, yes it made me forget but I hated the feeling of being out of control and how vulnerable it made me to others.
Then I became a mum, I didn’t want her to think that it was ok to manage how she feels this way. So, I found other ways, helped her to name her emotions and talk about how she is feeling. She knows she can come to me no matter what. Gave her what I hadn’t had growing up.
The need to self-harm doesn’t just go away, and there have been times I have slipped up, the last time was 3 years ago and the wound needed treating properly which frightened me. I vowed not to do it again however strong the need became, and I haven’t. It has been extremely hard, it is like fighting an addiction when the need is strong. I will ping an elastic band against my wrist, I will write or distract myself until the need eventually passes, it does eventually pass once I have felt each emotion at full.
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In 2018, when my daughter was 4 I was attempting to return to work, the Job Centre told me that it was unlikely I would get a Job because I had low grades for English and Maths. They recommended I attend a training centre to gain those qualifications.
By May 2019, I had achieved that along with a ICT qualification, and although I gained the qualifications quite easily, attending the training centre had been hard work. I spent 3 full days in a busy social setting (although smaller than school), which meant my anxiety was constantly on a high on those days. When I wasn’t at the training centre, I was taking my daughter to and from nursery and then school when she started. It may not sound a lot to some, but it took its toll on me.
I was struggling with the school run, taking her into the classroom was with a rush of people down a narrow corridor. My daughter was coming up to the age I was when I was abused, I was reaching the age of 40, it was like a perfect storm of events and it had a huge impact on my already fragile mental health. The Anxiety, or thats what I thought it was, was awful and I couldn’t handle it anymore, so I referred myself for Therapy through the NHS. There was quite a long waiting list, so by the time I reached the top the Covid-19 Pandemic had just started and we were in the first lockdown (2020). My daughter was in year 1 of school. The only thing available at that point was an online Social Anxiety Group, in normal circumstances I would probably have turned that down, but this wasn’t normal circumstances and I was desperate. The group was carried out over 12 weeks, 12 sessions, if I remember correctly. So each week I logged in to the group, I was using my phone to do so, this meant I only saw each person as and when they spoke so it wasn’t as bad as I was expecting. I learned a lot from that group; after several weeks I mentioned something (I can not remember what that was now), and the therapist suggested a 1:1 appointment. I mentioned the trauma I had experienced, seeing my dad die, the loss of my brother. He recommended that I had some further 1:1 sessions after the social anxiety group had ended.
After a few sessions with the therapist he diagnosed me with PTSD, which he suspected I had been battling with since I was a child and from the abuse. Also seeing my dad die from a heart attack when I was 17 probably added to the trauma. The therapist was constantly writing down notes, and even through zoom I could see that. We discussed doing some therapy specifically for that area and the PTSD. After a couple more weeks the questions had changed and he asked if I thought I could be Autistic, that surprised me as it had never been something I had considered before. After all, my nephew was diagnosed autistic and I was nothing like he was. My knowledge of autism at that time was solely based on what I had seen with my nephew. I admitted I wasn’t sure, the therapist suggested I read the book Spectrum Women and he also sent me links to articles about the female presentation of autism. By the next session I was convinced, reading Spectrum Women was like reading a book about my life, I could relate to so many of the experiences of the women in the book. Even down to my issues with smell, which had never made sense before, finally my whole life made sense. He filled out the referral form with me during the next session, then we focused on the trauma therapy after that. A couple of weeks later I had the initial assessment with the NHS Autism Assessment service, there was enough evidence to add me to their waiting list, which was 18 months at that point.
I had had therapy before and no one had mentioned PTSD or Autism before, I think I was in Autistic Burnout though, the mask had slipped. Approaching 40 as well, it was as though my Autistic traits had become more visable, and maybe that’s why it was picked up or maybe he had had more experience in this are than the other therapists I had seen. Either way, I am grateful to the Covid-19 pandemic, if it wasn’t for that I probably would still be none the wiser.
During this time I realised my daughter was likely to be autistic as well, she is very similar to me and struggles with the same things. She was experience difficulties at school and with Anxiety. We had already had a few negative experiences and times when the teacher didn’t take me seriously, so it was difficult to get them to see that my daughter was likely autistic, they just couldn’t see the signs at school to begin with. Despite the panic over fire alarm, despite her anxiety and other difficulties, they struggled to see it. I mentioned to the therapist that we were struggling with school and being heard, he suggested contacting Early Help to see if they could help and do the talking for us, as it had been successful for some of his previous clients. But, Early Help didn’t want to help, they didn’t listen to me either. My didn’t get a referral for autism until she reached year 3 of school (September 2022). Therapy with this therapist ended at the beginning of 2021 I believe, the time line is a little bit hazy now.
18 Months had seemed a long way off at the start, but life became busy and I had a lot of distractions, before I knew it it was March 2022 and I had been given a date for my first autism assessment appointment. I was also having trauma therapy through a local charity, the therapist from the charity was brilliant and supported me through my assessment as well as doing the trauma therapy.
I won’t go in to detail about the appointments as I wrote blog posts about the assessments at the time in more detail. I received my Autism at the age of 41, a couple of weeks before I turned 42. That is almost 2 years ago now, I was handed my report and that was the end of it. There was no explaining what it meant or after appointments, I was just handed a few sheets of A4 paper. Everything I have learned since has been off my own back, researching using the Internet and connecting with the autistic community on Facebook. They have been a lifeline for me, without the Facebook pages I connect with, I am not sure where I would be.
I am still very much in the infancy of my journey, still learning what my diagnosis means for me and how it guides my life. In fact, my daughter recently received her diagnosis in April 2024, so we are on this journey of discovery and learning together. I couldn’t ask for a better companion in this.
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The last few weeks have been really difficult and emotionally, I am all over the place. I feel like that scared little kid again, the one in the photos, she was so misunderstood and felt like she wasn’t really meant for this world. I so want to reach in and give her a hug, but I am not sure she would have allowed it as back then she wasn’t really a hugger as she found them uncomfortable. My family wasn’t really the hugging type of family, whether that stems from being part of a neurodivergent family I am unsure. I wasn’t aware of that until I was diagnosed and since then I have been able to spot who was likely to have been diagnosed now. My grandads dad was locked in an asylum like institution, he had epilepsy and lived in a time when little was known about it.
Some of this I have mentioned in previous blog posts, so I apologise for repeating myself, I just need to write and get some of what is swirling around my mind out so that I can let it go and move on or at least try to. I feel very stuck in my life at present, I have struggled with my mental health since I was a child, in recent weeks I have tried to change things so that instead of feeling like I’m just existing/surviving, I wanted to live my life. I need to be able to work. But, It has all kind of back fired on me, it is just so so hard. I looked for support to help me, I searched for groups where I could meet other Autistic people, but where I live and the fact that I am unable to drive made it impossible. In reality though, Dorset (England) is so far behind other places for support in anything autism (neurodivergent) related. Autism and Mental Health is even less understood and even further behind unless you have the money to go private. There is nowhere for me here.
I was a very quiet child, more of an observer than a talker, but even when I did talk no one really heard me so it was easier not to speak. I was much happier spending time alone because people hurt you and people were complex and a mystery to me. There is a huge difference between spending time alone and feeling alone. When you are autistic, whether you are aware of it or not, you know that you are different from a very young age, normally by the time you start school. You spend your life being misunderstood, trying your hardest to fit-in and to be like everyone else. Scrap that, change it – trying to be like the majority of people. I am well aware that a lot of people have it difficult (I am not that stupid to not see it), but at that age I wasn’t, everyone else appeared to have mastered it.
People don’t seem to understand, not really, they have no idea how hard it is unless they have lived it. I am not sure I have the words to describe it anymore, not in a way that the people around me can grasp at least, I am not sure I have the ability for much at the moment. Spending your life not fitting anywhere, being so vastly different to your peers, being bullied for being the weird kid. I read a book called Keedie this week, it was by the same author that wrote A Kind of Spark – Elle McNicoll. It made me cry, its a children’s book and it made me cry, the author knows, she really gets what it is like and has the ability to put it into the written word in a wonderful way. I am so glad there are books like this that my daughter can have access too, where she can see herself and others like her written into its pages. I didn’t have that growing up and boy did I grow up feeling alone, navigating the neurotypical world as an autistic person can be a lonely place to be.
I set up the pages on social media in an effort to reach out to other neurodivergent people, to connect with others that way because in my real life there has been nowhere to do that. I thought that I could help others in the process to feel understood, because I do get it, and I have experienced such a variety of life events in my time. But, even on social media at present it feels divided, an us verses them kind of thing, neurodivergent people verses neurotypicals and that was not what I was expecting to find. The whole autism acceptance day, week, month thing feels so fake, there seems to be such a divide in the language and symbols used, but it doesn’t seem to really change anything. Once it is over it is forgotten, awareness and understanding only seems to last as long as the scheduled day, week or month. I have been toying with the idea of shutting my pages on social media down as I am not sure that it really achieves what I had intended it to.
I am probably not the right person to give advice and support right now due to struggling myself, I have completely lost my way. I am scared of this world, scared of what my daughter is going to encounter as she grows up, I wanted it to be different for her which was why it was so important to me for her to have her diagnosis now. I know how challenging it can be when you live life undiagnosed, how am I meant to help her feel positive about her neurotype, help her embrace it, when everything is so difficult. The constant barriers at school and how cruel people can be. She is the only reason I am still here, I couldn’t leave her to face this world alone.
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Do these special days, weeks, or months actually make a difference?
I am not sure they do, not really, once it passes, life and fitting in to society is still very much a struggle. Out of sight out of mind, it all seems to be forgotten with most people as soon as it is over. But, its never over for me, nor for my daughter, its our daily lives. Schools and local authorities don’t change just because its Autism Acceptance Week, they still rarely listen to parents or children. People’s views don’t change over night.
My anxiety is through the roof this morning, I am sat here waiting for 10.30, the time we are going out. It has taken a lot of planning so that we are prepared for every possible outcome, although we can’t fully prepare for it as we have never been to the place we are going to before. I have started to carry a sunflower lanyard with us, but it remains in my bag as I haven’t plucked up the courage to use them. I don’t openly/obviously stim in public, but there is a girl that gets on the bus who does, she rocks back and forth, and looking around the bus most people are watching her. Some people laugh and wisper.
When there is any sign of someone being different, people judge, there is no getting away from that. Making quick judgements in life was a big part of our survival, I have experienced it most of my life, at school, at work and socialising. People can be really cruel, I have been bullied, judged, and taken advantage of. They don’t seem to be aware of the damage that their words can do, or maybe they are, and in a way that is worse. I try not to compare our lives with anyone else’s, but some days that is difficult, seeing everyone’s photos on social media and the fun days they are having. Living normal lives without a second thought, for us everything is thought through down to the fine details to keep us safe.
On Monday I went for coffee with a friend, I enjoyed that time catching up with her, but the lighting was awful. Low hung lights over the table, that were buzzing away loudly, the noise of the coffee machine made it difficult to hear.
For me, Autism means:
- Not Fitting In
- Sensory Sensitivities
- Not Being Heard
- Daily Struggle
- Constant Planning
- Exhaustion
- Loneliness
- Isolation
- Hard Work
- Constant Pain
- Masking
- Misunderstood
- Anxiety
- Depression
- Autistic Burnout
It is hard to see the positive when its a constant fight to exist. Unless society radically changes, and not just for a day, a week, or a month, then that isn’t going to change any time soon.
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People have always been confusing to me and if I am honest, people wear me out. No, that’s not entirely true, a lot of neurotypicals wear me out. Give me another neurodivergent person and I can talk to them freely and often at length, with a lot of neurotypicals communication is clunky, forced, and rehearsed.
I have always struggled when it comes to people, when you are autistic, whether it is known or not, people often judge you. From the very start, what you do and how you behave is focused on, and criticised. Your peers let you know how weird you are, you are often told you are rude, that you are doing something wrong, to sit still, to stop interrupting, to stop doing this and to stop doing that. Bit by bit, they chip parts of the person you are away so that you fit into a neurotypical shaped hole.
People make me anxious. It left me terrified of what people thought of me, which meant I made even more social mistakes than I did initially, every conversation is analysed at great depth. I can’t get rid of that fear at all, believe me I have tried. People scare me. From a young age I learnt that people hurt you, they lie to you to get what they want from you, they have their own agenda. Through my life that has been reinforced, from abuse, from bullying, from lying, and from broken friendships.
It’s funny how you can be surrounded by people, yet feel alone. Crowds and groups of people are difficult, especially when their is a lot of sensory stuff going on, for me personally the worst part is Emotional Noise. In a group or crowd there are many people giving off an emotional vibe, many different emotions and I can feel every single one of them. I absorb them and feel them like my own, it can become overwhelming and confusing and you lose track of how you felt to start with.
I coped better with it when I was younger, I mean I had episodes of Autistic burnout throughout my teens, twenty and thirties, at school and at work. To over come it, I would spend less time in those environments. But, the longest episode has been since I turned 40, I haven’t been able to climb myself out of it. I can have an appointment, phone call or when I go out, afterwards I have to sleep for 2 or more hours, because it drains every ounce of my energy. Time spent peopling wears me out. That has been a new symptom since turning 40, I have had test after test, adjusted medication, nothing has been found to be a cause, so it isn’t physical.
It has meant I have gone out less and less, it has meant I haven’t been unable to work, although I am trying to change this. In recent months I have been trying to push myself to go out more, it has resulted in me needing to sleep more and my anxiety levels have gone sky high. I need to find a space where this doesn’t happen because I don’t want it to be this way, there is so much I want to do. I am losing far too much time.
People are hard work. This neurotypical world is hard work. I am not sure I want to be a part of it anymore.
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It’s not very often that I get time on my own, there is always someone with me and although I love them dearly, there are times I need quiet and time by self. The weird thing is, despite having people around me constantly, I quite often feel alone. Feeling alone is not the same as being alone though, it stems from not being heard, and not being understood, among other things.
You know, I have wanted to run away more times as an adult then I ever did as a child, to go somewhere that no one knows me. I don’t fit-in here at all, in all honesty I never realy have, if only I could leave earth and travel to a distant planet to find our “tribe”. I have spent the last few months searching for something that I am not entirely sure exists. I am not even sure what that something is, I am trying to leave the house a bit more, trying to connect with people and to do that I need some support. I need someone to understand, to understand me and to understand how difficult being autistic can be. I need someone that I can talk these things through with.
There are times when the world is just too much, too loud, too bright, too smelly, too fast, too rushed, and with too many expectations. There are many unwritten rules telling us who we should be and what our lives should like, if you don’t meet them by a certain age, well, then you are failing. Get a job, Fall in love, buy a house, get married, have a child, have another child; my life is far from conventional. So many people kept telling me what I should be doing and what my life should look like. I have spent most of it feeling a failure. The funny thing is, I have only just realised, most people stopped telling me once I received my autism diagnosis.
I am at the point I need to think of looking for a new job, but that terrifies me, none of my previous jobs have ever been successful. Although, they have mainly been noise factory jobs, where I spent the day highly anxious. Being in a high state of anxiety all day everyday had an impact, I would make a mistake or struggle to communicate with other people. After so long I would become overwhelmed or burntout, I would either be signed off or I would have the strong need to escape. And I would run, I would walk out and not return because it was all just to much for me to cope with. There was one occasion when I experienced a very public meltdown, its not often I have meltdowns (I normally have shutdowns), but this day had been building for many many months. I had locked everything inside and it had to release in one way or another.
Every year I pray for snow, but that doesn’t happen much now, not in the part of the UK that I live in. I love it when it snows, it brings a muffled silence to our little part of the earth, oh how I yearn for that silence. The world feels as though it has slowed down, a sense of calm bestows us like a comfort blanket. When it snows, I like to get up early and be one of the first to walk through it, the only sound being the footsteps I make.
There is a constant battle fighting away inside, wanting to go outside to meet others and to be a part of somiething. At the same time I don’t want too want too, being at home is safe, my anxiety is less when I am at home. I am scared.
The world out there is just too much
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It is my belief that there are some things about being autistic that leaves you vaulnerable; for years I blamed myself, I BELIEVED that I was at fault. That is, until my daughter reached that age and I realised just how little a 7 year old could do to protect themselves.
I was 7 when the abuse started, the heartbreaking thing is I was abused by 2 different people who were not connected, one being my dad’s step-dad (he doesn’t deserve the title of grandad) and the other a neighbours son. The months before, my neighbours son thre me up in the air and didn’t catch me, leaving me with a broken arm. Then when I was 7 he sexually abused me. I know that because I remember the teacher I had that year, when I told a friend about it, but at the time we were both too young to know what to do with that information.
At one point I had my hair cut really short so that I looked like a boy, I guess it was my 7 year old mind telling me it would protect me, It didn’t. I was in year 9 (13 – 14) before I told an adult, but because I didn’t cry or react in the way they would expect, it wasn’t taken seriously for a little while longer. I guess that I was unable to show emotion and talked in a neutral tone, im not 100% sure, but it wasn’t what they expected.
There are a number of factors that left me vaulnerable, an easy target, which I will discuss below. There are many skeletons in the closet in my family, on both sides, many women who have experienced trauma at the hands of others, I won’t say all of them are neurodivergent though, although there are more neurodivergent people in my family on both sides.
Unable To Read Body Language and Others Intentions
I struggle to read body language, even now, although I am better at it now than when I was a child. I also struggle to read other peoples intentions, I cannot always tell if they are being honest (which is what I expect), or if they are being sarcastic or telling lies and as for reading between the lines, there is no hope. At that age I took people at their word. A little naive perhaps.
They were meant to be people I could trust.
When I was told no-one would believe me, I belived them, when I was told no-one would like me or I was unlikable, I believed them, so I stayed quiet. I was a kid that was already feeling different and struggling to fit-in.
As a result of the trauma I experience hypervigilance and can pick up on vibes better than the visual stuff, I can sense peoples moods straight away, and sometimes peoples moods can even be suffacating. Emotional noise is a huge issue for me right now, and triggers anxiety. I am so scared of upseting people and ask them if I have because I can sense their mood even if they something different.
Taking Things Literally
There was a time when I believed everything someone said or took what they said literally, I still do at times and because of this I question everything people say. It can lead to situations that are problematic.
Wanting to Fit-in and Be Liked
This is the main one that can leave someone vulnerable, there were many times I was left to play alone because “friends” didn’t want to play with me. All I wanted was to be liked and to fit-in, both of which felt hard to come by, so when someone is kind to you and gives you attention you take it with both hands.
When they invite you to spend time with them or into their home you accept, and for a while it can be fun, until it isn’t anymore.
As a kid you are told not to engage with strangers, but these people were not strangers, one was family and one was a neighbour. People that had been to my house and we went to theirs. People that had attended parties and meals with us. They were meant to be safe people.
Wanting to be liked and to be included is one of the things that can make us vulnerable.
I remember my neighbours son locking me in his room, after a while I could hear my dad and others calling my name and knocking on neighbours doors, sometime passed before he finally let me out. No-one else had known I was there, not even his sister who was in his house.
There were times I couldn’t escape these people no matter how hard I tried. I refused to go to London to my nan’s flat as I got older, but sometimes there was no choice, no-one questioned it. My dads step-dad had hurt others in the family, some knew what he was like, but it didn’t seem to protect the younger ones in the family. I was angry about that for sometime, until I accessed some trauma therapy.
Communication Differences
Communication differences or difficulties can also make us easy targets. We may not have the words to explain what is happening to someone else, not in a way they can understand, which is why it is so important to teach children the correct names of body parts.
I was a painfully quiet child anyway, the abuse contributed to that, because being told no-one would believe me or like me, made me feel like I couldn’t tell anyone. So, I become even more quiet, after telling someone when I was year 9 didn’t achieve anything it was evidence that supported that belief. I should add the abuse had stopped at that point, but it was still having a massive impact on me.
It took me until the age of 13 – 14 to have the ability to tell someone, to talk about it, I didn’t really know how before that. And even then it was with the support of the friend I had spoke to all those years ago.
Photo by Pixabay on Pexels.com During my late teens there had been a a couple close calls, where I didn’t realise the intentions of others until the last minute. In those situations it was luck or down to a friend that anything didn’t happen.
Reading body language and the intentions of others are things that don’t come naturally to autistic people, its a skill that may develop overtime through observation and learning from friends, but it doesn’t develop for everyone. Safety skills need to be taught, accurate information about body parts and boundaries needs to be given. It has been important to me to give my daughter the skills she needs to stay safe as she grows up, open conversation where no topic is off limits makes it easier for her to come to me when she encounters a problem. I am hoping this will be enough to make her less vulnerable.
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– 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. I thought I knew what autism was because my Nephew was diagnosed autistic at a young age, I watched him grow up, but I was wrong, very wrong. I am ashamed to say I didn’t look into it any further than that. That is until it was suggested to me that I was autistic by a therapist. Unless autism comes into your life, whether thats through having a child with autism or working with children, you probably had no need to look into it to much.
Autism had never been on my radar, not with regards to myself at least. In 2019/2020 I referred myself for therapy with the local NHS service, I was really struggling with the school run and being around people in general, my daughter was under the hospital and her school was not listening to me, my daughter was also coming up to the age I was when the sexul abuse I experienced began, and I broke. I didn’t realise it at the time but I believe I was experiencing autistic burnout and a trauma response; at that point I seemed to lose a lot of my abilities, coping stratagies, some of which haven’t returned, and was really struggling with life. By the time I reached the top of the waiting list the Covid-19 pandemic had just started to take hold, which meant that all there was available to me was an online Social Anxiety group. Normally I would have turned something like that down, but I was really struggling, so I accepted. I did enjoy the group and gained a lot from it, although it was a little awkward as I had never attended anything like that before, especially online. The information supplied with the group was really interesting. During one session I mentioned something to the therapist and he arranged a 1:1 session (online), and then arranged for some 1:1 therapy after the group had ended. During one of those sessions he diagnosed PTSD, which he believed I had been battling with since I was a child, then a couple os session lessons later he asked me if I thought I could be autistic. At this point I wasn’t sure, the only knowledge I had of autism was seeing my nephew grow up and I wasn’t like my nephew, so he sent me links to information and suggested a book to read. Spectrum Women – Walking to the beat of Autism. It was like reading about my life, for the first time ever I saw myself, there was no doubt after that. I was autistic. I am autistic.
Growing up and living as an undiagnosed autistic person is hard, you know that you are different, and your peers know that you are different, and it has a huge impact on your mental health. As a child I believed I was broken, a failing human being, it felt as though I had been sent from a distant planet to observe and learn the ways of the inhabitants of earth. But, there were no instructions on how I was meant to do this, how I was meant to blend in. In an effort to “Fix” myself I bought my first self-help book at the age of 12. My collection of books grew quite large, but not one of them fixed me or answered my questions, I still have them in a plastic storage box under my bed. Over the years I have had counselling and CBT therapy many many times, which seems to be a common theme for undiagnosed autistic people. Therapy in the past has been in an attempt to “fix” the parts of me that I believed were broken and for anxiety and depression. So it didn’t work in the way I was expecting; once I realised I was autistic, I understood that I was trying to fix something that wasn’t broken in the first place. Also, I had PTSD, Autistic Burnout and anxiety associated to being autistic, which meant that traditional means wouldn’t work in the same way and a different approach was needed. The therapist started to adapt the therapy once he realised I was autistic.
Being different makes it difficult to fit-in, it can be such a lonely situation to be in. It annoys me when people say “parents are quick to label their children these days,” autism isn’t a label, its a different neurology and a diagnosis. Children are given labels when they are not diagnosed, but these are less kind, some of mine were from teachers, family members, strangers, friends and in some cases even myself:
- Rude
- A loner
- Weird
- Too Sensitive
- Attention Seeker
- Shy
- Difficult
- A hypochondriac
- Stupid
- unlikable
- Lazy
A loner was written in my school report during my time at the last school. That one hurt the most, partly because it was in writing, and partly because it wasn’t through a lack of trying. I tried so hard to make friends and to fit-in, but I always managed to fail; I hated that school report. The truth is though, that brutally honest school report, helped towards reaching a decision for my diagnosis.
Another thing that was mentioned in a school report was my tutor saying she wished I would talk to her. I didn’t know how, I didn’t have the knowledge or words to explain what was going on, and I didn’t understand what was causing the need to escape the classroom. The need to escape was so strong; I spent most of the school day in a constant state of anxiety, there were times I would go into a panic and would find any excuse to leave the classroom. I spent a large portion of the last 3 years of school in the library, medical room, or at home. Apparently, the school years are meant to be the best years of your life, but for me and many other autistic people, school was hell. School is designed to be a one-size-fits-all environment, but it isn’t suitable for some people.
It is important to understand what autism is and what it means for you, which is why it was so important to me for my daughter to have her diagnosis as early as possible, she has known about autism from the moment I realised she was autistic too. We discuss it openly, because I feel the more knowledge you have the better equipped you will be. I had no idea why I dreaded school so much, the thought of returning after the school holidays made me feel so unwell, so much so I ended up with extra days off because it made me ill. I had no idea why I was in a constant state of anxiety and that terrified me, “what is wrong with me“. I didn’t understand how much of my anxiety was related to sensory sensitivities, how the lighting, smell or noise would become to much and trigger panic because I couldn’t cope with it. No one else appeared to be struggling with it.
My experience of work was much like my time at school because I left with low grades, I believed factory work was all that was available to me. Factories are a sensory nightmare, especially when you don’t know that is one of the triggers, it would cause me to become constantly stressed and anxious. Meaning I struggled with people; because of the background noise, I struggled to hear the person talking to me and they would get frustrated because I struggled with eye contact which would frustrate people as well because they thought I wasn’t paying attention. And, because I was stressed and anxious constantly and unknowingly masking, I experienced episodes of severe depression (Autistic Burnout) and was overwhelmed. There were times I was signed off, much to the annoyance of the employers, and when it was too much I would end up walking out because I couldn’t cope any longer.
The damage to my self-worth and mental health was extensive, I felt as though there was something drastically wrong with me, why couldn’t I do what everyone else was doing. I hated myself for it. I experienced suicidal thoughts. I felt worthless and a burden to the people around me. My diagnosis gave me a greater understanding of myself, it has enabled me to cut myself some slack, and to realise that I am not broken.
I am still learning what autism is for me and the impact sensory processing disorder has on me, I am still learning who I am underneath the mask. I am trying to learn how to manage my mental health better as well; home is my safe place, and leaving home is anxiety-triggering and for a while, I have only left home when absolutely necessary. I am trying to connect with the community more, leave the house more, and look for a job, but it isn’t easy, especially when experiencing constant anxiety and burnout through pushing myself more. I looked for some support, but there really is very little out there.
A Late Diagnosed Autistic Mum 