Newly diagnosed and annoyed

I don’t blame you for having to wear a ‘mask’ out there, but I’ve never been able to cope with it myself because of my difficulties, :(. Yes, I’ve heard of people on the spectrum have been able to ‘mask’ or ‘pass’ to ‘fit in’ I’ve never been able to do that, -_-. I don’t know whether its because of my PTSD, or because my conditions are worse. I can’t cope in a workplace because it reminds me constantly of the traumas I went through at school. I couldn’t cover my difficulties, no matter how hard I try. I wish I could, but I know it’s impossible for me, :(. I don’t know you’ve managed to make it out there with your difficulties. You certainly are a braver person than I am, >.<;. I hope you’re able to find the help you need, I hope we both can, :).

I can relate to you saying there is no help and support for us out there, and I agree also that the governments, now and in the past, do not care about us and our difficulties. They may say they do, but they don’t, -_-. Most, if not all, of the mental health ‘professionals’ have no idea about about autism, or it’s related conditions. It’s not even mandatory to undergo even the most miniscule training in autism, and more to do with severely autistic learning difficulties, which we are not, :(.

I’ve not been able to write to people who’ve been able to ‘mask’ and ‘pass’ like that myself, and a lot of it has to do with a combination of things, not least of all my PTSD. You see, whatever autism may be, your traumas will always remind you of the pains you’ve been through. I’ve heard of this idea of ‘masking’ or ‘passing’, but I could never carry out such a task myself. The difficulties I’m affected by are too powerful to quell, and too existent for me not to experience an emotional meltdown by a neurotypical’s careless words. I have tried to in the past at certain times across the internet, but it’s always ended in failure, :(.

No CBT treatment will be able to help my conditions. The only thing I know will have a greater chance of success is being able to write to people who can understand where I’m coming from, and share our experiences, and perhaps help to support each other that way, :). It’s the best strategy I’ve felt would have the greatest chance of success, because being able to relate to someone can help give you the strength to make it through each day. That’s my viewpoint on life, for what it’s worth, >.<;. You’d need understanding friends who would be willing to stand by you and support you both when you need it the most.

I’ve been on many ASD forums and websites, and I know from personal experience that abuse seems to be common place, even among autistic individuals themselves. I’ve been attacked, my mother has been attacked, and all I’ve ever wanted was to be able to socialise in an environment I thought I felt safe in, the internet. The outside world can be just as brutal, because you have to face people in person. On the internet, and in the physical world, you have no idea what may lie behind a person’s disguise, which in turn, increases anxiety and tension, causing people to become hostile, and the internet can quickly turn into a battlefield.

Sometimes, I don’t even have to tell anyone I’m autistic, because they can tell from my writing how different I really am, :(. I am in both verbal and written form, verbose, but how many people around my age of 27 do you think write the excessive amount I do? You can’t even imagine how small the number really is, unless you’re also verbose as well, OTL.

There have been people that have simply written one liners to me, (just a random name with no relevance), ‘Hi. I’m Ashley and cool :)’, and I’m expected to say barely anything, but what do I do? I write practically an essay in response, and do you think they decide to write back? Well, it depends on the person. Most of the time, they’d ignore me, or at the very least, attempt to write back, but before long, slip into nothingness, OTL. Either that, or I can’t cope with the PTSD ‘triggers’ they’d cause, resulting in further meltdowns. It either became too unbearable for me, or they couldn’t cope with what I was saying, -_-. I can’t shut off my traumas, no matter how hard I may try, >.<;. I feel I need to find people that I wouldn’t need/have to ‘mask’ or ‘pass’, to fit in, because I know I can only be be myself, :(. I can’t pretend my difficulties don’t exist, they are too powerful, -_-. I hate lying to people, and I detest communicating with neurotypicals who are ‘shut off’ from the meaning of what our conditions mean to us. People who are close-minded aren’t always easy to spot, unless you can recognise the signs, -_-.

I never wanted to imitate neurotypicals, because personally, there are aspects of life which I’ve only been able to understand because of my autism. I have learnt from personal experience, that there can be demons lurking behind certain neurotypical’s disguises, >.<;.

Thankyou, Bushido, it's is really good to read about this from the perspective of someone who is unable to mask. There have been periods of my life when I couldn't mask, but those were only ever short-lived and forced upon me by burn-outs and mental illness. Reflecting back on those times, what you have said makes a lot of sense to me. It's not until recently that I've seen how desperately trying to rush back into my usual masking behaviour each time, largely because other people had come to expect it, has been a huge amount of effort for very little return. Masking seems to ease the way in the short-term, but it prevented me from admitting to my mental pain and asserting my needs, leaving me unable to truly make any progress with either my psychological problems or life in general.

Bushidō said:

I feel I need to find people that I wouldn’t need/have to ‘mask’ or ‘pass’, to fit in, because I know I can only be be myself

Yes, that is undoubtedly the only real solution, whether we're unable to mask or struggling under the weight of masking. I have been very fortunate to have found a few people who have been accepting of the "real me" that I'm slowly exposing, and for most of them, my autistic traits have been no more disturbing than the symptoms of acute mental illness that they have seen in me many times over the years.

Thank you, Trogluddite, for your response, :). I’m so glad I make sense to somebody. I’ve always felt like the odd one out, even in the ASD community, when it came to ‘masking’ and ‘passing’.

You see, I can remember so well my experiences in the mainstream school system, where I experienced my breakdown in secondary school. I can remember how it happened, what led up to it, and why it hurt me as badly as it did. You know, I don’t personally understand this, ‘masking’ and ‘passing’, but I think, indirectly, there was a time at school when I tried to ‘fit in’, to some degree, but it resulted in my breakdown, which is why I’ve not been able to attempt it again. It led me to suffer, so therefore, I knew I couldn’t do it again, it didn’t help, it only made things worse, :(.

I had no friends at school, or rather, the person I thought was a friend, betrayed me. Anyway, I went through so many traumatic experiences at school, some of it involved emotional pain. When I was in secondary school, an incident happened to me, or rather, I was approached by an incident, a girl and her two friends. I was bullied so much at school, I didn’t know what was going on, I thought everyone who ever approached me were only interacting with me because they wanted to tease or bully me. What I didn’t expect was the outright shocking statement that came from this incident. When this incident took place, it really blew my mind wide open, I didn’t know what to believe anymore, what was real and what was false. I couldn’t tell the difference, not after being hurt so many times, so I was politely dismissive. It got to the stage where I thought I was dreaming, because such occurrences never happen to me. Much later on, I came to realise what a tragic mistake I made, but it was too late by then, :(.

Anyway, as I was saying, this incident completely took me off guard. I didn’t know if I was coming or going, I was in total confusion. I couldn’t tell up from down, reality from falsehood. My mind started to do summersaults, and I was unable to control its actions. I was able to look at some of my educational records, connected to my statement of special educational needs, and I noticed a few notes at the tail end of my secondary school education. The SENs teacher in that school who recognised my autism, but only after my breakdown, wrote notes about me before my breakdown. It was strange, because I’d forgotten what she wrote, but as I was reading it, it started to come back to me. She was writing about how other students around me were roughhousing, playing around, and when I joined in, I became rougher, which, I knew, was totally out of character for me. Looking back on it, I can remember exactly the reasons why. It was because of this incident involving these three girls. I felt like I was experiencing out of body experiences. I mean I was there, but my actions felt almost automatic, like I was on autopilot. It was very strange. I would never have been rough with anyone, I was always the quiet child, hardly saying ‘boo’ to a goose, so something was clearly hitting me hard at the time, and it was. I feel this was me attempting to ‘mask’ or ‘pass’, though I felt like I was on another planet at the time.

There was one other incident that happened to me, and it involved a loose paving stone in the playground. A lot of other students were standing on it, messing around. I thought it was stupid, and wanted to stay away from them, but when this incident happened to me with these three girls, because I was so confused and out of my mind at the time, the second day, I stood on this paving stone myself. I didn’t think anything untoward would happen, I mean it was just me standing on it, what was the worse that could happen? Well, just shows you how wrong I was, I wasn’t able to factor in that another student would jump on the other side. I mean, what were the chances that another male student would come along and jump on the other side, cracking the paving stone I was standing on? It was just typical I ended up being the one on the paving stone when it cracked. Just as the slab cracked, so did my heart, right along with it, :(. I just turned around, and there was one of my bullies, with a huge grin on his face, running right into the P.E. gym hall to tell the P.E. teacher, who happened to be the head of year as well. I felt totally dead inside. It wasn’t the first time I felt dead at school, but it was bad enough to leave a lifelong scar that causes me trauma with every single authoritative figure since that time. Basically, I looked towards the opened school gates, I could have run out and made a break for it, but I couldn’t, I felt I needed to walk into that gym hall, I tried to do the right thing at school, I didn’t want to get into trouble, I felt like I was tied to a chain, but oh how I wish I did choose to run out of those gates, :(. The head of year, interrogated me in front of two classes in the gym hall, and it absolutely devastated me. What was worse is that he knew I was affected by OCD, so he knew I had difficulties, but he still attacked me with no mercy, :(. The male student who jumped on the stone came up to me as I was crying, and he asked me if I was alright, I couldn’t answer him, I was too upset. He never owned up for his responsibility of jumping on that paving stone which caused it to crack, I took the full force of that interrogation alone. Not even my friend at the time helped me, he just shook his head! He betrayed me when I needed help and support the most, :(. I was crying for at least a week since that time, and I could never return to that school, I was adamant to the educational welfare rights officer, and he knew how out of character it was for me to be so forceful. I could also never face authority figures after I’d faced that trauma, and it hasn’t left me to this day.

That was my attempt at trying to ‘mask’ or ‘pass’ to ‘fit in’, and it didn’t do me any good. All I was left with was more trauma, by neurotypicals, who had no idea of the hell I was going through, and couldn’t have cared less, and authority figures, who should have known better, but didn’t, :(. Lifelong trauma, that was my reward for trying to be like everyone else. I can’t ‘mask’ nor ‘pass’, because of the trauma it left me with when I attempted it in the outside world.

I don’t know how anyone can ‘mask’ and ‘pass’ without being affected by serious mental illness. I was left with Post Traumatic Stress Disorder because of the constant bullying throughout my life at school, and also the trauma it caused me when I tried to ‘fit in’, :(. I am traumatised by those memories; they never leave me. I can no longer face authority figures because of what I’ve been through, not only at school, but when I was taught at home following my statement of special educational needs. Not only that, not one mental health so called ‘professional’ ever fulfilled on any of the promises they made at any of the many meetings my mother attended regarding my situation. They couldn’t have cared less, :(. No one ever came to help me, no one ever came to talk about my difficulties, issues and why I was traumatised so much.

It’s because I can’t ‘mask’ nor ‘pass’ that leads me to these ASD forums, in order to socialise with others who can, hopefully, understand where I’m coming from. I wish more people could understand what happens when you have faced so much trauma because you’ve tried to ‘fit in’ and only ended up with a lifelong condition, :(. I have no option; I have to keep trying to find a way. I just hope more people out there can be open-minded enough to come to understand that not everyone has the ability to ‘mask’ nor ‘pass’ because of what we’ve been through, :(. It’s not our fault, it’s the way the neurotypicals around us that have affected our coping levels, completely obliterating any resistance you may or may not have left.

In the end, I’ve come to realise, if we’re able to be ourselves, at least around each other, we can start to socialise more effectively. That’s my hope anyway, I have to believe that somehow, someone will choose to write to me because they want to be themselves, and not have to put on their ‘neurotypical’ face. I can’t read behind people’s ‘masks’, I just wish we could be more open, I’m struggling to understand how to communicate with people if I don’t know who I can trust and who I can’t, :(.

I feel, the best way to help, at least some of our difficulties, is to make long term friendships, to help support each other. Since I was always alone in the playground at school, I was always left to my thoughts, so I would analyse the world around me, come up with strategies and ideas about my future. I knew I couldn’t act like everyone else, it was impossible, and it would only end up hurting me, that’s how I viewed my surroundings. Little did I know at the time how right I was, but that’s another story (which includes emotional trauma), other reasons I’ve already explained earlier in this message, :(. Anyway, what I’m referring to here is that, in the end, we only have each other, we understand each other better than a neurotypical. I didn’t even know I was affected by autism at the time, until my breakdown in secondary school, but I knew what I needed in life. I knew I needed support from someone in my peer group, someone who could understand where I was coming from, someone who I could trust, someone who would always stand by my side, stick up for me when I needed them the most, and always be someone I could rely on. I don’t feel I would ever be able to find that support from a neurotypical (I wish they’d be able to understand me, but I know it’s not as simple as that. I’ve tried before, but I’ve only ended up being hurt, -_-), I feel the only person able to be that support would either be someone on the spectrum themselves, or at least with some knowledge or experience about something I’ve been through.

Trogluddite said:

I have been very fortunate to have found a few people who have been accepting of the "real me" that I'm slowly exposing, and for most of them, my autistic traits have been no more disturbing than the symptoms of acute mental illness that they have seen in me many times over the years.

I’m glad you’ve been able to find a few people that have been able to accept the ‘real you’, :). I just wish more people would write to me who are just being themselves, >.<;. I’ve been through a lot of traumatic experiences both across the internet and in my life, I feel I need to find as many understanding people as I can out there in this hostile world, :(. I feel there are too many ‘wolves in sheep’s clothing’ hiding out there, people who hide their demons behind their disguises, and I never know who I can and cannot trust.

Socialising can be extremely difficult if you can only be yourself, but it equally causes the need to grow even stronger, :(. I have so many difficulties, I can’t help the way they affect me, I can only be myself towards the people I write to, because I know how badly I’ve been hurt when I’ve tried not to be, when I was in the school system. It didn’t help me, only hurt me, so I want to be able to write to people who wish to be themselves, at least around me, :).

The harder it is to socialise, the more important it is to find safe environments where I can, and websites like these are the one and only places I feel I can be able to cope with. These are my social groups, I have nothing else, I am housebound, I can’t trust the authorities, and I just want to be able to write to people who understand where I’m coming from, to be able to make strong friendships that will last a lifetime, or at least, that’s my hope, :). When you’re as trapped as I am, you have no choice, I have to keep trying at least, >.<;.

Writing on the internet has become a cycle, I keep getting battered down, go through intense meltdowns due to being misunderstood, then eventually, I try to pick myself up, and try all over again. This has been the cycle that has led me to this point, and it’s making me so sick and tired, but I have to keep trying, right? I mean, there has to be some way I can find more understanding people out there on the internet, who can see where I’m coming from, >.<;.

Thank you so much again for your reply and understanding, Trogluddite, :). It’s so hard trying to socialise out there when ‘masking’ and ‘passing’ aren’t options that can work for you because of the traumas you’ve been through, :(.

I'm not sure if this type of school exists anymore. 

There was NO academic teaching.  The school was on hospital grounds and many children were bought there by hospital transport.  I lived less than a mile away so I was trusted to walk alone. 

In the morning we were indoors as a group. 

In the afternoon we were assigned to various staff members on some rota system,  individually or in small groups and we left the building. 

Several memories stick out.

I learnt basket weaving.

One afternoon a week we went to a proper swimming pool and I almost learnt to swim.

I will always remember the skinny mute girl who never spoke but hid either under the table tennis table or behind an old heavy bookcase.  And staff trying to get her out.

The afternoon visits out, were usually enjoyable, we went to various parks, woodlands, two visits to Robin Hood bay, on the north Yorkshire coast. Visits to Knaresborough,  etc.

Being interviewed by the police about a former staff member.

Being bribed with money and dumped near the city centre. And told to find my own way home. While they went somewhere else. ( I was only ten years old at the time).

Good old days.    And VERY different from the normal school.

Thank you very much for your compliment of being a good writer, Robert123, .

You certainly sound as if you have been through absolute hell in your school life. I can relate to 'refusing to go to school', that's what happened with me. Soon after I'd been diagnosed with OCD, I was given a certificate for being off school for six months. During that time, an independent educational psychologist, paid for by IPSEA and an occupational therapist, also paid for by IPSEA, and during that time I was also diagnosed with autism. After the six months were up, I was behind my bedroom door and the first home and hospital tutor came in to give me 'puzzle work sheets' as the local authority still wanted to get me back to school, but not the one I was at, but I constantly refused. By that time, a semi famous child psychologist became involved in my case and I then ended up having education at home.

I would have gone absolutely off the rails if I'd been forced into the situation of going back to normal schooling after being in a semi safe school for a year. To have a taste of schooling which would have helped you only to have it snatched away must have been absolute torture. I wouldn't have been able to cope at all. I wouldn't have survived, I may have even taken my own life, .

How you've survived is incredible. You're very brave, .

Well, you are certainly a good writer and I can emphasise with much of what you say.

My school life was also a disaster. And I've written about it here before .

I started school in 1967, this was before autism was recognised and there was no help available. 

The first three years were an absolute nightmare.  I was mute, unable to understand English or speak it. And I was physically punished every day,  sometimes two or three times.

Being in school and surrounded by other children was one of the most lonely experiences I ever suffered. 

I survived by refusing to go school for weeks at a time .  

Eventually I got sent to a 'special' school for a year.  This was the only school I fitted into.  The other children were as emotionally damaged as me.  And the best aspect of this school.  No violence .

Then it was back to normal schooling and the long hard struggle to fit in and survive. 

Well, you are certainly a good writer and I can emphasise with much of what you say.

My school life was also a disaster. And I've written about it here before .

I started school in 1967, this was before autism was recognised and there was no help available. 

The first three years were an absolute nightmare.  I was mute, unable to understand English or speak it. And I was physically punished every day,  sometimes two or three times.

Being in school and surrounded by other children was one of the most lonely experiences I ever suffered. 

I survived by refusing to go school for weeks at a time .  

Eventually I got sent to a 'special' school for a year.  This was the only school I fitted into.  The other children were as emotionally damaged as me.  And the best aspect of this school.  No violence .

Then it was back to normal schooling and the long hard struggle to fit in and survive. 

I'm not sure if this type of school exists anymore. 

There was NO academic teaching.  The school was on hospital grounds and many children were bought there by hospital transport.  I lived less than a mile away so I was trusted to walk alone. 

In the morning we were indoors as a group. 

In the afternoon we were assigned to various staff members on some rota system,  individually or in small groups and we left the building. 

Several memories stick out.

I learnt basket weaving.

One afternoon a week we went to a proper swimming pool and I almost learnt to swim.

I will always remember the skinny mute girl who never spoke but hid either under the table tennis table or behind an old heavy bookcase.  And staff trying to get her out.

The afternoon visits out, were usually enjoyable, we went to various parks, woodlands, two visits to Robin Hood bay, on the north Yorkshire coast. Visits to Knaresborough,  etc.

Being interviewed by the police about a former staff member.

Being bribed with money and dumped near the city centre. And told to find my own way home. While they went somewhere else. ( I was only ten years old at the time).

Good old days.    And VERY different from the normal school.

Thank you very much for your compliment of being a good writer, Robert123, .

You certainly sound as if you have been through absolute hell in your school life. I can relate to 'refusing to go to school', that's what happened with me. Soon after I'd been diagnosed with OCD, I was given a certificate for being off school for six months. During that time, an independent educational psychologist, paid for by IPSEA and an occupational therapist, also paid for by IPSEA, and during that time I was also diagnosed with autism. After the six months were up, I was behind my bedroom door and the first home and hospital tutor came in to give me 'puzzle work sheets' as the local authority still wanted to get me back to school, but not the one I was at, but I constantly refused. By that time, a semi famous child psychologist became involved in my case and I then ended up having education at home.

I would have gone absolutely off the rails if I'd been forced into the situation of going back to normal schooling after being in a semi safe school for a year. To have a taste of schooling which would have helped you only to have it snatched away must have been absolute torture. I wouldn't have been able to cope at all. I wouldn't have survived, I may have even taken my own life, .

How you've survived is incredible. You're very brave, .