You might be wondering why I describe my feelings of my ASD experience as "shameful", and it has most probably offended you (unintentionally, of course).
Being ashamed of having anything "wrong" with you shouldn't be misconstrued as trolling or hurting others. That is not my intention, which is why I have written this blog, to explain the best I can to those on the spectrum who might take it the wrong way when I use the word "shame".
Shame is not always an opinion against something. It can just be an emotion felt by a person who has lived through a lot of stigma, bullying, rejection, and being treated differently due to who they are.
For the first 4 years of my life I developed typically. I reached all my milestones on time, including talking and potty-training. I was a sociable toddler, got along with my peers and loved to play. Then at age 4 years and 5 months, I started my first day of school, and I suddenly changed. My behaviour was so out of character, that it came as a shock to my parents and the teacher, who all thought I was just as ready to start school as the rest of my peers were (socially and emotionally).
Apparently I'd acted out like I did because something about school made me frightened and I seemed spooked. I was disruptive, uncooperative and antisocial and it even made the teacher cry.
Nobody knew why I was acting like that. But as soon as I was out the school gates I was myself again. I had to then move to a smaller class, where there was a mentor who helped me settle in, and I did settle down within 2 weeks (although I still suffered school anxiety, as I can remember feeling it). I'd often screw my eyes shut to shut it all out, whatever was frightening me.
But the social services wouldn't drop it. They then began suspecting my behaviour and anxiety being a result of child abuse, and my parents had the stress of having to be interrogated and checked while under the threat of having their children taken away. After it was clear that there was NO child abuse going on at home, the social services then turned their attention on to me and my anxiety.
I didn't like being monitored and questioned. It made me feel different from the other kids, even though I didn't even feel that different from them when I was around them. My anxiety caused me to have a few panic attacks or temper tantrums at school but I grew out of them by age 6 and just wanted to be left alone by child psychiatrists and continue with how things were (getting a bit of extra help with my reading and writing but otherwise just being treated like any normal kid, and I was doing fine and improving significantly).
But the stupid social services wouldn't stop, and they actually forced my parents to get me diagnosed with something or they'll be labelled as bad parents and get us children taken into care. So my parents had no choice in the matter and had to go through with it, attending numerous appointments discussing my behaviour (mostly my behaviour at home, which was due to underlying ADHD).
It was stressful for me having to sit in a room where my parents were talking about me to other adults, in that serious manner, my dad looking like he couldn't be bothered with it all and my mum looking close to tears. I just sat there, feeling like I was "mad" or "mental", and just wanted to be like all the other kids in my class who didn't have to go through all this. I felt like I brought shame and disappointment to my family, even though they loved and supported me, they didn't love all the problems I caused.
Then after loads of assessments and someone observing me like I was a bug under a microscope, I was finally diagnosed with Asperger's syndrome not long before my 9th birthday. And then the minute I received the diagnosis, my mum told everyone, and I mean everyone we knew, and my classmates found out too, in time. When I turned 11, I noticed most of my classmates were ashamed of me just because I had a label. I began being treated differently by them, and I felt like having Asperger's meant I was diseased or something.
All the kids at school then had to have a vaccination, and the school nurse phoned my mum the night before the vaccination and advised her NOT to let me have it because it will "make my Asperger's worse" (meaning I could lose all my social skills and become like a little boy I knew who had severe autism). So I was singled out, and was terrified of having vaccinations after that in case it messed up my brain or something.
My social isolation grew worse as I went to high school, and the other girls in my class were often rude to me or non-verbally showed that they didn't want me there. There was, like, 11 or 12 girls in my class, and they all hung about together in a large group, but because I was me, I was excluded and it did feel personal, being so I was a member of the class just as much as the rest were.
They just felt ashamed of me, saw me as the "retarded kid", and treated me differently most of the time. I used to imagine myself as one of them and really, so badly, wanted to be neurotypical so that I would be automatically included in the group. I knew I would have been if I was neurotypical just like them.
I have a lot of cousins and I relied on them as my friends, but when we got to teenagers they all began seeing their own friends and I felt so lonely. My mum would get exasperated with me and compare me to my cousins. I was often lectured or made fun of by my lack of friends, like it was shameful or something. So I just went around believing it was shameful and that I was just a huge disappointment and a failure. I'd often cry for a friend, which caused my mum distress, as no parent wants to see their child so lonely and desperate for a friend. I'd often ask her why I was born, and she'd become remorseful for having me because she hated seeing me so lonely and depressed. So she hated autism, but didn't hate me of course. She just wished she could magic the nasty autism away and make me normal. No, autism isn't who I am, so hating my ASD isn't the same as hating me. My mum just felt helpless, because you can't make friends for your teenage child and you can't make anyone be your friend.
Throughout my teens I made continuous effort with making friends, and just when I thought I'd succeeded, they suddenly turned against me and bullied me, telling me I was worthless and stupid because of who I was. So I was alone, while seeing all my cousins succeeding with friendships and having people to do things with. I just felt like I was a burden on my parents, and when I was a young adult I became a shut-in while all my peers were out clubbing or doing other social activities together and I wasn't invited. Then when I forced myself to go out with my brother and his friends, I realised I had no confidence and suffered a great deal of social anxiety. So I sort of preferred to stay home where I felt safe, but at the same time I felt lonely and guilty for being a shut-in. I mean, when you're like 19 it's very unusual to be sitting alone in your room on weekend nights. I felt like a kid or an elderly person. I didn't feel normal. And I resented it.
And to this day the same feelings have stuck with me. I prefer not to be defined by autism. I prefer to just brush it under the carpet in my day-to-day life, and just talk about it on this forum only. But autism is my deep, dark shame, and I have explained above how I came to feeling ashamed about it. There's even more, but if I explain everything then this blog would be really long.
So, it stands to reason why I feel shame about my ASD. I'd rather people here understood instead of taking it the wrong way. And yes, I do sometimes get angry about the fact that I have an ASD and have to let it out. I don't mean any harm or invalidation to other people's feelings here. How I feel about having ASD doesn't paint a picture of how I feel about anyone else on the spectrum.
To help put it into context, there are other things people are ashamed of. For example, I've seen Irritable Bowel forums before, and some people there have said they felt ashamed or embarrassed about their condition. IBS can be socially awkward and it's understandable that some people might feel ashamed, but that doesn't mean they're ashamed of everyone else with IBS. But the forum is there for them to express themselves to others with the same condition, and some did express feelings of shame about it.
And that's how I feel about autism. It can be socially awkward, embarrassing at times, and also the stigma and some of the stereotypes that go with it. Most things have stigma, not just autism. And it's okay to feel ashamed about it if you do (well, it's not okay for the person feeling that way but what I mean is it's not hurting anyone else on the spectrum if you feel ashamed). If anything I think it helps to talk about it, and I'd be delighted to hear more people on the spectrum who are ashamed to come out and say it, and share their reasons why.
So hopefully we can understand that autism is not a positive experience for everyone, and that not everyone can find peace with it. Autism is different for everyone and can have a different effect on your life to someone else's experience with it.
Being ashamed of having anything "wrong" with you shouldn't be misconstrued as trolling or hurting others. That is not my intention, which is why I have written this blog, to explain the best I can to those on the spectrum who might take it the wrong way when I use the word "shame".
Shame is not always an opinion against something. It can just be an emotion felt by a person who has lived through a lot of stigma, bullying, rejection, and being treated differently due to who they are.
For the first 4 years of my life I developed typically. I reached all my milestones on time, including talking and potty-training. I was a sociable toddler, got along with my peers and loved to play. Then at age 4 years and 5 months, I started my first day of school, and I suddenly changed. My behaviour was so out of character, that it came as a shock to my parents and the teacher, who all thought I was just as ready to start school as the rest of my peers were (socially and emotionally).
Apparently I'd acted out like I did because something about school made me frightened and I seemed spooked. I was disruptive, uncooperative and antisocial and it even made the teacher cry.
Nobody knew why I was acting like that. But as soon as I was out the school gates I was myself again. I had to then move to a smaller class, where there was a mentor who helped me settle in, and I did settle down within 2 weeks (although I still suffered school anxiety, as I can remember feeling it). I'd often screw my eyes shut to shut it all out, whatever was frightening me.
But the social services wouldn't drop it. They then began suspecting my behaviour and anxiety being a result of child abuse, and my parents had the stress of having to be interrogated and checked while under the threat of having their children taken away. After it was clear that there was NO child abuse going on at home, the social services then turned their attention on to me and my anxiety.
I didn't like being monitored and questioned. It made me feel different from the other kids, even though I didn't even feel that different from them when I was around them. My anxiety caused me to have a few panic attacks or temper tantrums at school but I grew out of them by age 6 and just wanted to be left alone by child psychiatrists and continue with how things were (getting a bit of extra help with my reading and writing but otherwise just being treated like any normal kid, and I was doing fine and improving significantly).
But the stupid social services wouldn't stop, and they actually forced my parents to get me diagnosed with something or they'll be labelled as bad parents and get us children taken into care. So my parents had no choice in the matter and had to go through with it, attending numerous appointments discussing my behaviour (mostly my behaviour at home, which was due to underlying ADHD).
It was stressful for me having to sit in a room where my parents were talking about me to other adults, in that serious manner, my dad looking like he couldn't be bothered with it all and my mum looking close to tears. I just sat there, feeling like I was "mad" or "mental", and just wanted to be like all the other kids in my class who didn't have to go through all this. I felt like I brought shame and disappointment to my family, even though they loved and supported me, they didn't love all the problems I caused.
Then after loads of assessments and someone observing me like I was a bug under a microscope, I was finally diagnosed with Asperger's syndrome not long before my 9th birthday. And then the minute I received the diagnosis, my mum told everyone, and I mean everyone we knew, and my classmates found out too, in time. When I turned 11, I noticed most of my classmates were ashamed of me just because I had a label. I began being treated differently by them, and I felt like having Asperger's meant I was diseased or something.
All the kids at school then had to have a vaccination, and the school nurse phoned my mum the night before the vaccination and advised her NOT to let me have it because it will "make my Asperger's worse" (meaning I could lose all my social skills and become like a little boy I knew who had severe autism). So I was singled out, and was terrified of having vaccinations after that in case it messed up my brain or something.
My social isolation grew worse as I went to high school, and the other girls in my class were often rude to me or non-verbally showed that they didn't want me there. There was, like, 11 or 12 girls in my class, and they all hung about together in a large group, but because I was me, I was excluded and it did feel personal, being so I was a member of the class just as much as the rest were.
They just felt ashamed of me, saw me as the "retarded kid", and treated me differently most of the time. I used to imagine myself as one of them and really, so badly, wanted to be neurotypical so that I would be automatically included in the group. I knew I would have been if I was neurotypical just like them.
I have a lot of cousins and I relied on them as my friends, but when we got to teenagers they all began seeing their own friends and I felt so lonely. My mum would get exasperated with me and compare me to my cousins. I was often lectured or made fun of by my lack of friends, like it was shameful or something. So I just went around believing it was shameful and that I was just a huge disappointment and a failure. I'd often cry for a friend, which caused my mum distress, as no parent wants to see their child so lonely and desperate for a friend. I'd often ask her why I was born, and she'd become remorseful for having me because she hated seeing me so lonely and depressed. So she hated autism, but didn't hate me of course. She just wished she could magic the nasty autism away and make me normal. No, autism isn't who I am, so hating my ASD isn't the same as hating me. My mum just felt helpless, because you can't make friends for your teenage child and you can't make anyone be your friend.
Throughout my teens I made continuous effort with making friends, and just when I thought I'd succeeded, they suddenly turned against me and bullied me, telling me I was worthless and stupid because of who I was. So I was alone, while seeing all my cousins succeeding with friendships and having people to do things with. I just felt like I was a burden on my parents, and when I was a young adult I became a shut-in while all my peers were out clubbing or doing other social activities together and I wasn't invited. Then when I forced myself to go out with my brother and his friends, I realised I had no confidence and suffered a great deal of social anxiety. So I sort of preferred to stay home where I felt safe, but at the same time I felt lonely and guilty for being a shut-in. I mean, when you're like 19 it's very unusual to be sitting alone in your room on weekend nights. I felt like a kid or an elderly person. I didn't feel normal. And I resented it.
And to this day the same feelings have stuck with me. I prefer not to be defined by autism. I prefer to just brush it under the carpet in my day-to-day life, and just talk about it on this forum only. But autism is my deep, dark shame, and I have explained above how I came to feeling ashamed about it. There's even more, but if I explain everything then this blog would be really long.
So, it stands to reason why I feel shame about my ASD. I'd rather people here understood instead of taking it the wrong way. And yes, I do sometimes get angry about the fact that I have an ASD and have to let it out. I don't mean any harm or invalidation to other people's feelings here. How I feel about having ASD doesn't paint a picture of how I feel about anyone else on the spectrum.
To help put it into context, there are other things people are ashamed of. For example, I've seen Irritable Bowel forums before, and some people there have said they felt ashamed or embarrassed about their condition. IBS can be socially awkward and it's understandable that some people might feel ashamed, but that doesn't mean they're ashamed of everyone else with IBS. But the forum is there for them to express themselves to others with the same condition, and some did express feelings of shame about it.
And that's how I feel about autism. It can be socially awkward, embarrassing at times, and also the stigma and some of the stereotypes that go with it. Most things have stigma, not just autism. And it's okay to feel ashamed about it if you do (well, it's not okay for the person feeling that way but what I mean is it's not hurting anyone else on the spectrum if you feel ashamed). If anything I think it helps to talk about it, and I'd be delighted to hear more people on the spectrum who are ashamed to come out and say it, and share their reasons why.
So hopefully we can understand that autism is not a positive experience for everyone, and that not everyone can find peace with it. Autism is different for everyone and can have a different effect on your life to someone else's experience with it.
- Next page: Here's an interesting quote that I found
