Understanding of Autism

[Christine Jarvis]

How do I get one of my sisters to understand my diagnosis of autism and the fact that I have a lot of limitations that she doesn't and I have to keep those in mind when doing stuff everyday. This way I don't end up in a meltdown. And now I think this may be part of the reason I really don't talk much to her.

 

[Thinx]

Have you said this to her? The way you put it in your post sounds really clear. However, most people don't understand autism, she's not unusual, and unfortunately it's quite hard to explain, maybe because Neurotypical ways are so dominant they seem like reality, set in stone, whereas we are different in many ways from those norms. Have you got other siblings who do understand, and could help?

 

[Christine Jarvis]

No I didn’t say anything to her because I didn’t want to end up getting upset. But it feels like her and my dad don’t understand sometimes that I can’t do everything they can and have limitations and I just want that to be accepted and respected. But my moms been really good about understanding my disorder and accepting what I can and can’t do. She even came in my room the other day and said no one including her can fully understand what I go through everyday with having autism; so maybe I should find a support group online where I can talk to people who are like me so I don’t feel so alone. And my other 2 sisters have been good about learning and trying to understand autism and the limitations it brings me and that I’m not doing this on purpose, this is just me.

 

[Christine Jarvis]

So, the situation I was talking about was with my grandparents who live 2.5 hrs drive away and they’re 87 and not in the best health. And it’s just really hard for me to deal not only with the drive but if we go to my aunts or uncles house they have these loud, annoying, hyper dogs; that like to jump up on you and bark all the time and that also not only overstimulated me and can send me into a meltdown. But it also triggers my ptsd because that comes from loud noise and my personal space being invaded by people or things. And my sister had asked me earlier if I was going to go but I said the drive just takes too much out of me and she asked me if I’m ever going to see them again and that bothered me because it feels like she realizes what I deal with on a daily basis. Well I talked to one of my other sisters about it and she said it’s more trying to encourage me to go but what I don’t need is encouragement. What I need instead is empathy and understanding about I didn’t choose to have this condition and I have limitations to what I can do and I can’t go past those limitations.

 

[George Newman]

When it comes to understanding Autism, there are three kinds of people ……. isn’t that right @Judge ?

 

[Christine Jarvis]

What are those 3 types of people?

 

[Judge]

What are those 3 types of people?

* Those very few who want to understand and will succeed.
* A few more who want to understand and will fail.
* With a vast majority who default to their way of thinking and expect or demand the same of autistic people.

That the reality is that the odds don't favor your sister truly understanding, whether she makes a concerted effort to try or not. It's actually asking a great deal of people, especially those in your closest social orbit.

And yes, it can be quite upsetting when those you most want to know cannot or will not attempt to understand.

 

[Christine Jarvis]

Thank you very much. It makes me feel better that some people won’t understand. But it’s hard because my mom and my other sisters try to understand so it gets frustrating when only one doesn’t try to understand.

 

[Judge]

Thank you very much. It makes me feel better that some people won’t understand. But it’s hard because my mom and my other sisters try to understand so it gets frustrating when only one doesn’t try to understand.

For me it's the worst that the person nearest to me and related by blood never accepted or understood my autism, and chooses as such despite having a background in medical insurance issues.

It hurts. That I believe she has the capacity to understand, but chooses to think most autistic traits and behaviors are more related to attitude than to be neurologically "hard-wired". As if we could simply "adapt and adjust" by will alone.

 

[Christine Jarvis]

And maybe I haven’t explained it right or maybe I’ve taken it out of context and got offended easily when I shouldn’t have. But I feel like at my mom is understanding and willing to learn about autism because she is my best friend. And she also has been encouraging me to find support groups for adults with autism; so she’s supportive with me no matter what.

 

[Judge]

And maybe I haven’t explained it right or maybe I’ve taken it out of context and got offended easily when I shouldn’t have. But I feel like at my mom is understanding and willing to learn about autism because she is my best friend. And she also has been encouraging me to find support groups for adults with autism; so she’s supportive with me no matter what.

Granted, it's a tough thing to accomplish. But then that's often a basic consideration for most people on the spectrum. The challenge of successfully communicating and in real time. Something you can choose to tell her from the outset.

Just keep some real perspective here. That while you may be full of ideas and enthusiasm to explain who and what you are neurologically speaking, it is a tall order for outsiders to truly grasp. No matter how close they may be to you emotionally.

I liken the process to trying to explain Egyptian Hieroglyphics without a Rosetta Stone at your disposal. That on some levels our very thought process remains somewhat alien to others.

Beyond accepting that most people will not likely understand, perhaps the next most important thing is to tell others of your autism only on a "need-to-know" basis only. To protect yourself emotionally and physically from subtle and overt discrimination. That in as much as many of us want to tell the world who and what we are, it remains a precarious prospect.

 

[Christine Jarvis]

I don’t know it’s just frustrating when I’m asked if I’m ever going to visit my grandparents because they live 2.5 hrs away and it’s just really hard because those usually turn out to be the longest days and take a lot out of me and takes a day or two to recuperate. But I’m also frustrated when I’m told to see visiting my grandparents as a challenge and not a limitation. Yet I know what my limits are and when I try to push past them it never works out well. So accept it and move on. And I will say I do need to make more of an effort to call them so I’m trying to find something that works for me as a person with autism. I never wanted to move anyway I wanted them to stay here in town near me so I could visit and I was the one that kept trying to talk them out of it but my uncle had already gotten my grandpa talked into moving to the town where he lives 2.5 hrs away.

 

[Judge]

I don’t know it’s just frustrating when I’m asked if I’m ever going to visit my grandparents because they live 2.5 hrs away and it’s just really hard because those usually turn out to be the longest days and take a lot out of me and takes a day or two to recuperate. But I’m also frustrated when I’m told to see visiting my grandparents as a challenge and not a limitation. Yet I know what my limits are and when I try to push past them it never works out well. So accept it and move on. And I will say I do need to make more of an effort to call them so I’m trying to find something that works for me as a person with autism. I never wanted to move anyway I wanted them to stay here in town near me so I could visit and I was the one that kept trying to talk them out of it but my uncle had already gotten my grandpa talked into moving to the town where he lives 2.5 hrs away.

Good example. How stressful and emotionally exhausting socialization can be, regardless of how well or not we know those we are visiting. A process that takes its toll on us, while to most people it's completely baffling or downright unbelievable that such things can be stressful at all.

Something far removed from simply being "bashful".

 

[Christine Jarvis]

And I know that my grandma and grandpa won’t be around for much longer; I think about it every night. So, I don’t need to be told that.

 

[Fino]

By talking to her.

 

[Neonatal RRT]

It depends upon the person. This is a topic of discussion that pops up from time to time,..."How can I get someone to understand?" In many cases, you cannot. There are a handful of reasons for this including, but not limited to: (1) Some neurotypicals lack the same empathy that some autistics do,...specifically, the type of empathy that allows them to take another's perspective. This has been my experience, even with my healthcare co-workers. Although they seemed accepting of my diagnosis, their typical response was no response, at all. Keep in mind, these are the same people that work with me in a huge children's hospital and deal with autistic children from time to time,...if anyone was going to be empathetic,...this group would be,...but no. (2) Some people you know have already made a "moral diagnosis" of you, may actually be unwilling to entertain your perspective or diagnosis,...and anything you say in terms of a "diagnosis" is simply going to be a interpreted as you "making up excuses", totally denying "a label", or will actively try to minimize your symptoms because "they have them too". I certainly have those people in my life,...well, not so much any more,...as I've cut many of those ties.

There are people who are genuinely interested in autism and wish to learn more about it,...not many, but they are out there,...in which case, there are several autism support websites, YouTube videos, and thousands of scientific journal articles.

For the most part, I would have to say, that we do have some control over the people we keep company with. One of the advantages of my autism, is that I am one that has a posterior pituitary issue that results in low levels of oxytocin and vasopressin,...the "love hormones",...the hormones that allow for interpersonal bonding. So for me, I generally have a very low threshold for negative people in my life,...I just simply stop interacting with them, and can do it with very little regret, emotional conflict, or thought.

 

[aspieoutlaw89]

For me it's the worst that the person nearest to me and related by blood never accepted or understood my autism, and chooses as such despite having a background in medical insurance issues.

It hurts. That I believe she has the capacity to understand, but chooses to think most autistic traits and behaviors are more related to attitude than to be neurologically "hard-wired". As if we could simply "adapt and adjust" by will alone.

neurotypicals who have strict expectations for us regardless of any autism form,they don't.

 

[Magna]

* Those very few who want to understand and will succeed.
* A few more who want to understand and will fail.
* With a vast majority who default to their way of thinking and expect or demand the same of autistic people.

That the reality is that the odds don't favor your sister truly understanding, whether she makes a concerted effort to try or not. It's actually asking a great deal of people, especially those in your closest social orbit.

And yes, it can be quite upsetting when those you most want to know cannot or will not attempt to understand.

How can someone truly understand being autistic unless they're other autistic themselves or they have similar challenges stemming from a different condition or disability?

How could a man truly understand the act of natural childbirth or pregnancy?
How could a woman understand certain men's health issues?
How could a person blind since birth truly understand a seeing person's experience of sight?

I don't get it.

 

[Judge]

How can someone truly understand being autistic unless they're other autistic themselves or they have similar challenges stemming from a different condition or disability?

How could a man truly understand the act of natural childbirth or pregnancy?
How could a woman understand certain men's health issues?
How could a person blind since birth truly understand a seeing person's experience of sight?

I don't get it.

You seem to be working this out only in terms of absolutes.

There are no absolutes here. But one may potentially understand autism enough to become sympathetic to our everyday lives rather than continuing to expect us to behave and conform to patterns of thinking which may be alien for many of us.

Understanding such things comes in degrees. It's not an "all-or-nothing" consideration. Though it's also no secret that for some of us, non-binary thinking can be difficult to understand as well.

 

[Magna]

You seem to be working this out only in terms of absolutes.

There are no absolutes here. But one may potentially understand autism enough to become sympathetic to our everyday lives rather than continuing to expect us to behave and conform to patterns of thinking which may be alien for many of us.

Understanding such things comes in degrees. It's not an "all-or-nothing" consideration. Though it's also no secret that for some of us, non-binary thinking can be difficult to understand as well.

Can some non-autistic people achieve a level of understanding? Yes. Can they understand in a literal sense (yes I'm being literal or "absolute")? No.