Shining some light on Insecurities - How autism affects siblings.

[AndyTrunks]

Editor's Note: Having actually written it all out in one big page really puts things into perspective. That's some damn impressive levels of insecurity I have about myself there lol. Having said that though, I’ve decided to post what i wrote, as is. instead of putting it back in the box. I think it’s healthy to cast light to one's insecurities at times, in a controlled way. So you can take an honest look at them and start working it all out.

I have been dealing with some feelings and thoughts lately that I just can’t seem to put a pin in and leave alone, satisfied with what I've made of them . So I decided, why not write the whole thing down into one big ramble and see what people make of this. It’s a bit meandering but it’s honest.​

I have a brother with severe autism. Think a preteen child in the body of an adult in his thirties. I am the younger sibling in this relationship and for as long as I can remember my only real exposure to anything autism has been my interactions with my brother, or other neurodiverse people that have about his level of functioning through various events/institutions. Most of it related to him.

When i turned 24 I was diagnosed with Aspergers. This coming after spending the majority of my adolescent and young adult life trying to force myself into the shoes and masks of a neurotypical person. Everything that had to do with autism brought up memories like: “Exhausting tantrums my brother throws, his disinterest in a sibling relationship I wanted to have and rejection when I tried to interact with him as one. His interests being put before my own or having had to be paid special attention to.” etc.

Getting diagnosed with anything even tangentially related to all that, was devastating. Like after spending all that time trying to differentiate myself based on the directive of “Don’t you dare end up being such a drain as he is.” I ended up being lumped in the same box despite it.


That was five years ago. Five years of introspection and personal growth with mentor support and job training among several ups and downs. I’ve had a lot of time to reflect on how much exhaustion, how many scrapes, emotional confusion and distress I could have avoided had the diagnosis come earlier, and I’d been given better tools at an earlier age. But hindsight is always 20/20 I guess. I now have my own place, a job, and a cat. Some good online friends, and the growth shows no signs of stopping so all in all, I should be happy.

But the feelings I had five years ago about my brother and my own diagnosis in relation to him have more or less stayed a constant.

I know intellectually that I am not my brother, and that the spectrum varies so wildly that no two people on it really have the same traits. People are people and they differ, as they should. I've been trying to do everything I can to not be the guy in the room with zero filter, who forces his hyper focus interest on others in the middle of a conversation. Who talks at people and not with them. Who takes what he needs from people without really understanding or considering what that might take out of their energy or funds or well being. And I’m good at that, to the point of over correction and burnout.

I just can’t seem to stop constantly being anxious about how I will look whenever I’m next to him in any social gathering beyond just me and him. At being thought of as less than I am just by association. It feels like walking a minefield where I constantly worry the next second will be the one where everyone goes “Yep, he’s just as bad at his brother cause they’re on the spectrum, what a loser, screw hanging about that kind of person.”


So.. In closing, I’d love to hear from people who also have autistic siblings, or have experienced something similar. I want to hear your stories and your thoughts about what it means to be a sibling to someone on the spectrum, or maybe even if you are that sibling, how it has shaped your relationship with your own siblings.

Most of all I just don’t want to feel like I’m alone with this.

 

[Wolfsage]

I am officially diagnosed Asperger's and my brother is Nuerotypical. So I don't know if my story matches up. I'm the older brother. And he is very young.
Like his father he cannot see life threw the lense of an Aspie. Why I do and don't do certain things. Or why certain doors are closed off to me. Or my thoughts on different topics. We are two different people bound by blood. It doesn't matter I still love him. And try to do things with him. Share advice.
I can see the image your brother would inspire in others people's mind. And why your worried about your own. But, he is your family. And needs you. Plus why worry about the thoughts of others? How they see you is there problem. You know who you are. Your brother is not tarnishing your image. He's showing people the responsibility you carry daily. In caring for a loved one who needs your help. It's the mark of a good brother and a strong family. Hope that helps.

 

[Thinx]

My sister and I are from an older generation, where Aspergers was rarely diagnosed and was seen largely as a male issue. We are not diagnosed, but we realised in later life this applied to us, in my case I did such a lot of therapy that in the end the unchangeable differences and communication issues relating to the core of autism were fairly easy for me to spot in myself, after I learned about Aspergers as part of my work as a family counsellor.

I could see it in my dad too, and understanding about having a different brain was useful in helping me understand our family dynamics. I wondered when I was reading your story, whether you think your parents show features of autism?

Parents have a lot of impact on how children and young people feel as they grow up, and remembering my own childhood, in terms of having parents who struggled to cope with aspects of relating, I also wondered how your parents were coping as you grew up. It sounds like your brothers issues and needs would have made life quite stressful for them, and that this impacted on you, as it would any sibling of a child with his level of difficulties. You seemed to have to worry about not giving them any more problems, rather than just being able to feel they were there for you.

I don't think this is all about autism, as this is only an aspect of who we are. We also have developmental needs much like those of neurotypical people, and children need attention, time and love from their parents, whatever their neurotype. If parents can't reliably offer this, we are likely to become insecure, this then can give us challenges in making attachments that are secure in later life, or being able to feel secure and loved in relationships. This can be hard to disentangle from the way autism can impact our communication and relating, and I am still disentangling this for myself, having learned a lot through therapy and subsequent relevant trainings.

I would certainly say that for reasons to do with their own life challenges, my parents were not able to help support or relate to their children in a way that would have been adequate. This leaves us with work to do on ourselves in later life. However, unlike some aspects of autism, we can work on and improve our feelings of security in the world and with others, over time.

So I m conscious I haven't said a lot about relating with my sibling, this is because I feel like any child, neurotypical or neurodiverse, would likely finish up with some distress and issues such as anger or guilt or anxiety, after coping with a childhood where their sibling needed a lot of support, and where their own needs had to be suppressed or couldn't be met, so although me and my sister both have high autistic traits or Aspergers, we didn't have to contend with what you went through.

I liked that you expressed all this and posted it, it's good to allow yourself that, to say what it was like and how you have been affected. I ve done that about my family issues over the years, and don't really feel troubled by those experiences nowadays.

 

[Ella Spell]

I believe my brother would be identified as classic Aspergers on the old system, but he's never been evaluated. He's three years older, and my only sibling. I am Level 2 ASD.

 

[renaeden]

I have two older sisters and a twin sister. None of them are autistic. My twin, however, received therapy for fine and gross motor skills when we were six years old. She also repeated Year One at school.

 

[Suzanne]

I am the only one with aspergers in my family of 5 and I am the oldest and as you can see by my profile, I am a female and that is quite unusal to be diagnosed, but I got that nearly 2 year's ago now.

Do not have a relationship with my siblings.

 

[Jeremiah]

AFAIK, I'm only one in my family with autism diagnosis.

 

[AndyTrunks]

I want to start out by thanking everyone for their replies, especially Thinx for their incredibly well put together post that has given me a lot to think about already!

This part hit home especially.

Parents have a lot of impact on how children and young people feel as they grow up, and remembering my own childhood, in terms of having parents who struggled to cope with aspects of relating, I also wondered how your parents were coping as you grew up. It sounds like your brothers issues and needs would have made life quite stressful for them, and that this impacted on you, as it would any sibling of a child with his level of difficulties. You seemed to have to worry about not giving them any more problems, rather than just being able to feel they were there for you.

I don't think this is all about autism, as this is only an aspect of who we are. We also have developmental needs much like those of neurotypical people, and children need attention, time and love from their parents, whatever their neurotype. If parents can't reliably offer this, we are likely to become insecure, this then can give us challenges in making attachments that are secure in later life, or being able to feel secure and loved in relationships. This can be hard to disentangle from the way autism can impact our communication and relating, and I am still disentangling this for myself, having learned a lot through therapy and subsequent relevant trainings.

I would certainly say that for reasons to do with their own life challenges, my parents were not able to help support or relate to their children in a way that would have been adequate. This leaves us with work to do on ourselves in later life. However, unlike some aspects of autism, we can work on and improve our feelings of security in the world and with others, over time.

So I m conscious I haven't said a lot about relating with my sibling, this is because I feel like any child, neurotypical or neurodiverse, would likely finish up with some distress and issues such as anger or guilt or anxiety, after coping with a childhood where their sibling needed a lot of support, and where their own needs had to be suppressed or couldn't be met, so although me and my sister both have high autistic traits or Aspergers, we didn't have to contend with what you went through.

This had been brought up earlier for me during some of my therapy, but it was one of those points we never got back to and worked through. I was always quiet at home so I wouldn't be putting even more strain on my already hands-full parents while they had my brother to worry about. Even after he moved out and I was just me and them, I kept defaulting to this kind of behavior.

It's very frustrating to realize that while they probably did everything they could to make things work as best they could, and that it ended up not being enough. It ended up with a situation where I felt I couldn't tell them I was being bullied regularly in school from start to finish. And that I learned to lie to them about how I felt and what how things were from an early age. And it's probably very understandable that I wanted someone to blame for all that, because the alternative was that my parents couldn't properly take care of me. Which is something a child should never ever have to feel.

It was probably doubly frustrating for them to also have to deal with a second child that was indignantly against the idea that they might be on the spectrum, to the point of convincing the psychologist they took me to when I was 16 that I definitely did not have autism, It was my mom being paranoid. (I still get teased for that one.) Who tried and failed at very basic neurotypical things but refused to stop being his head against the wall.

I find it understandable that I would be putting so much of the blame for all my troubles back then at my brothers feet. I honestly thought he was doing it all on purpose just to get at me for a very long while back then. And also railed against the "injustice" of being sidelined next to his needs. If I had to work so hard to just have a fraction of what he was getting, why couldn't he just put in more effort like I was?

But with this perspective laid over my past It all just seems so, disappointingly clear that It was all just a stressed out, overtaxed and overworked situation where there simply wasn't enough to go around for the two of us. They did what they could with what was available and probably went above and beyond to try and make ends meet between their attentions.

I just don't really know where to take the next step from that conclusion. Guessing a therapist is a good first step though.