Vulnerablilty issue

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Sometimes I wonder if I am more vulnerable as an HFA than if I were an LFA. I was thinking about this because as I was filling out the application for the Equine Therapy program I began to have a lot of fears about being in involved with the group. I was thinking about this because the woman in charge of the group in a very sincere effort to reassure me told me that even though she knows I am on the Spectrum she does not see me as a disabled person but as a wonderful person who has a lot to offer. I really appreciated her vote of confidence and I know that I can do a great job there but I think I was a little insecure because in a way I don't want her to think of me as a person who is not disabled. I have had many jobs in the past and have been involved in many situations where I ended up having so much trouble because people did not see me as disabled. So when I did or said something very typically Aspie I ended up getting into a lot of trouble and sometimes even losing the job. I also feel very vulnerable because people really can't tell by looking at me how sensitive and fragile I can be especially if I am overwhelmed or struggling with sensory overload or when my brain is in child mode. People can very easily hurt me very deeply and they can also scare me.

Sometimes I wonder if HFA's can be more vulnerable than LFA's because with LFA's it is much easier to see that the person has a disability and people tend to be more sensitive. Sometimes I wonder if I did not look so much like an NT if people would be more sensitive with me. I don't want this thread to turn into an HFA vs. LFA thing. Please don't do that. That would make me very upset and very hurt. I am just a little nervous to start this new program. They already have me pegged for a position of leadership, even the Special Olympics lady had wanted me to be a leader with them and all of the other groups that I met at the Autism Expo said the same thing. That sort of thing scares me a little. I am not scared of helping others and leading by example, I am scared that in all of that because of how high functioning I am and how I look, people will forget that I have very deep special needs as well and that I was actually coming to these groups for help. Every one of the people I followed up with from the Autism Expo told me that none of then thought that I was getting information for myself but rather for an Autistic child that they thought I had even though I clearly told each of them that I have Asperger's right when I met them. It totally did not even register with them that I was on the Spectrum even though I said it clearly. They just saw my appearance and assumed otherwise. This kind of concerned me because I struggle a lot and I was hoping to get some help from some of these groups. But if they never realize that I am disabled they might not only not help me but expect things from me that are unrealistic. I guess I would not be so concerned about it if my past had not been so full of emotionally traumatic experiences because of this. I guess we'll see how it goes.

Skibum, have a look at this thread: "Are you very high functioning":

http://www.wrongplanet.net/postxf251370-0-60.html

They are discussing problems like yours.

I feel vulnerable when I don't receive letters

Seriously, I perceive people, who are perceived as being "low-functioning," as being rather vulnerable, since they frequently suffer from co-morbid conditions like epilepsy., and other conditions which are detrimental to their overall physical health. Additionally, one has to be gentle with them because they are affected by sensory issues, yet are frustrated because they have difficulty conveying their distress to others.

It seems as if there is a fine fit between you and the Equine Therapy program.

I don't understand how this is supposed to be reassuring .... it makes it sound like she is contrasting being disabled and being a wonderful person who has lots to offer.

Anyways, re: the worry about people not helping you or being insensitive because they don't realize you need help, can you talk to the woman in charge of the group about your concerns? I don't know if that would help or not, but I don't think it would hurt to try, if you're able to.

She is not contrasting being wonderful and having lots to offer from people who are disabled. She really believes in people no matter what their abilities are and I have seen her with LFA students and she is really exceptional with them and thinks they all have a lot to offer. I really think she meant it to me in a way that she did not want me to sell myself short.

I know what I am capable of so I know that even though I might be selling myself short in a way, sometimes when people can't really see that I have issues or when they forget it can really cause huge problems for me. But I told her in detail what my issues are. She said that it was not necessary for her to have all that personal info about me but I figured it would be a good idea. She is very cool and I know that she will do her best to work with me and listen to me. But it just made me wonder about this topic since in the past and even now with other people I can easily get hurt by people who refuse to believe that just because I look like them does not mean that I am like them.

I agree that LFA's can be extremely vulnerable especially those who have difficulty communicating distress. And some people are very mean to them by choice as well which is horrifying. But I know that with me, and I can only speak for myself, sometimes I also have a very difficult time expressing distress. Sometimes I think in colors and patterns other than words and sometimes my speech deteriorates to where I can't express anything when I am under duress. If people saw that I was visibly disabled they would not expect me to function and keep up with them even when I can't keep up because I am under such sensory stress. I can barely keep up in general. I had people yell at me because they thought I walked too slowly and even though I was 20 at the time they yelled at me like I was 2. But no matter how fast I tried to walk I simply could not keep up. And they were walking at a normal pace for them, not super fast.

They also expect me to be able to speak clearly and concisely like they do all the time so if I am under duress and I can't speak, they just think I am being quiet or rude. They have no idea that there could possibly be something wrong. I have had times like this when instead of getting help people got very frustrated with me and yelled at me telling me I was rude. And when you try to explain to people that you have a disorder and certain sensitivities they look at you and, "No you don't. How can you have this or that and be able to do this or that." Or they say, everyone is sensitive to things. Or I have even heard, "So and so is really disabled because he has and such, you can't compare yourself to someone like him and say you are disabled." And at that point there is nothing you can say or do to change their mind and the next thing you hear from them is, "You just need to buck up and keep up." Or if you have a meltdown, it's "stop trying to get attention or stop having a temper tantrum." Then you get fired from your job or kicked out of a program. So with some people if you don't look disabled you aren't no matter what you try to explain. So many of us have been through this and I know that I have lost so many jobs because of it.

I have even been yelled at for smiling when people thought it was inappropriate for me to smile. One of my friends saw me alone in my car once. My car did not have a stereo. But I was in my own little world and I was smiling from ear to ear. She yelled at me and told me that I am fake because I smile all the time when there is no reason to smile. She said the perfect example was that I was smiling alone in my car. People have also yelled at me for laughing at very inappropriate times. And I know that this is something that I do sometimes. I try to control it but sometimes I can't control it. And it's always been the worst when someone has a bad toothache. I don't think that a bad toothache is particularly funny at all, I don't know why I always laugh at that but I do. I laugh inappropriately a lot. I also apologize inappropriately and I have been yelled at for that. People just expect me to act and be able to function a certain way because I look so much like them.

And I can tell some people a thousand times that I am sensitive to sounds and lights and movements and speech patterns but it never registers with them because I look normal so they get mad at me if I show that I have an issue with these things.

And how many times have I been told, "Use your head, stupid" because I understand things differently and ask questions which seem inappropriate because the answers are so "obvious" to everyone else? My smart Alec response is, " I do use my head, mostly for banging out of frustration coming from dealing with people who say stuff like this." And then if they see me headbang, which is often an involuntary reaction for me and I can't always stop it, then they yell at me for having a tantrum.

Another great example. We have someone close to us who has a mental disorder and it is very obvious that he has it. Even though he is lower functioning than I am in the sense that he has to live in a special home and he has to be medicated in order to keep from having hallucinations and things like that, he is older than I am and much more intelligent. He actually skipped a grade in school and got a bachelor's degree with gold cords with his disorder. I dropped out of college because I could not finish due to my sensory issues. He is also much more mature than I am emotionally. Now you all know that I love to color little kid coloring books. If he asked a certain person in both of our lives to give him a little kid coloring book, she would tell me to get it for him and to "Understand" how therapeutic this is for him and she would insist that I not judge him. If I asked her for a little kid coloring book for myself, she would yell at me and say that I was being immature and that I have no reason to do something like that. And why don't I go out and get a job. And she would add that there is no reason why I can't hold a job. I must just be lazy or not trying because I am smart enough and capable enough especially after all the schooling she helped pay for.
But this is not meant to be a vent or a gripe session so I don't need to go on and on about it.

But I talked to the horse lady at length and from her response I think all will go very well and I think she will protect me just like she really tries to protect all her students and their families. So I do think this will turn out to be a good fit for me.

But the reason I started this thread is because it made me wonder about the idea of HFA's being very vulnerable. I know that if people yell at me or curse at me and especially if I don't understand why which happens very often because I can't always understand the nuances and intricacies of some forms of communication or sometimes I get yelled at because I simply can't respond in the time frame expected because it took me longer to process and figure out what was said or asked, I get very emotionally scarred by it and those scars can be very deep and really affect my ability to feel safe around people and my ability to function. If people are harsh with me I don't always understand that and that can cause me to not function as well. So when people see me they expect me to be as emotionally strong as they are but because more than half of me is stuck at such young ages and because at times I have difficulty processing things anyway, I can really be crushed very easily and no one would suspect it because I look so normal and so NT. And if something like that happens they just yell at me some more for being stupid or immature and tell me to "Grow up". So this is what I mean by being vulnerable.

I wonder if I looked physically challenged or looked mentally ret*d if people in general would be more considerate or gentle with me.

Last edited by skibum on 16 Apr 2014, 11:17 am, edited 9 times in total.

Jensen, I looked at the other thread. That article was great. Thank you.

Okay. I'm glad that she didn't mean it the way I thought it sounded.

(If I try really hard I can see how this works for a moment at a time -- i.e. that the contrast is not "you have a disability" compared to "you are wonderful and have lots to offer", but comparison of two models of perception: "seeing you as disabled vs. not disabled" compared to "seeing you as a whole person")



People labelled HFA can be vulnerable. Both in the way you meant and in other ways. If you can't read other people's intentions or understand what's happening in social situations, that makes you vulnerable. If you have langauge problems on top of that, it makes you even more vulnerable. How vulnerable is a matter of degree, and depends a lot on abilities and knowledge/experience.

Yes about the seeing me as disabled or not disabled thing. It's not comparing one to the other just saying that she sees my strengths and sees me as a whole person like you said instead of just seeing me as a disabled person and nothing else. She feels the same way about the LFA students where she focuses on strengthening their abilities rather than focusing on their disabilities. I just wanted to make sure that she did not see me as only abled and not susceptible to similar struggles that are obvious in the other students.

I agree that vulnerability levels vary like you said. That is why I think it is so important for people who work with HFA's to really get to know them because I know that I am much more fragile than I look. I am very resilient but I can be easily hurt and damaged.