Saturday, November 12, 2011

I Need Help!-Why it's sometimes hard for people on the spectrum to ask for assistance.

I thought that I might write a small follow up to the issue that I talked about in my last entry because I did think about it, and despite me thinking that it was something that wasn't informational, I realized that it could be.

In the entry Things You Wish Adults Knew When You Were A Child there are several comments about being bullied, emotional, or otherwise feeling a bit out of sorts and not having a clue as to how to go about expressing it.  One of them is mine.  I guess that's the whole point to my last entry.  I almost never actually say to anyone 'Hey, I'm struggling here, ' or 'help'.  As I said, it simply doesn't occur to me to do so, or I just can't figure it out. When I do finally get out that I'm having trouble as I did on my FB post (I literally said 'I'm falling apart') that's almost an S.O.S. for me.

For one, it's hard to explain my emotions.  I have to figure out what I am feeling, label it, and then figure out how to appropriately express that to another human.  There's a term called Alexithymia that applies to most people on the spectrum. It's basically the difficulty of processing and describing emotions.  I have worked very hard on this, and am able to some degree feel my feelings as they come and label them. It took a couple decades of practice with emotion charts, and perseverance.  It wasn't easy.  It's hard to ask for help, if you can't even identify that you're feeling down, angry, whatnot.  Even physical sensations would not be processed correctly, and still isn't to some degree.  Sometimes, when I am sick I get upset easily and have lots of meltdowns, but don't always process the physical sensation of feeling ill.  I've had strep throat as an adult for a couple wks before I realized I was sick, but was super difficult to deal with during that time!  So, now I know that if I'm getting moody, I may need to check in to see if I am hurting, not feeling well, hungry, thirsty.. ect...

I can now more easily label, say anger when it is occurring.  I can't always tell you why it's there, and am frequently left feeling upset, and not knowing why.  I have somewhat given up on always tracing back the reasons to my upset feelings.  I find it more important that I deal with my feelings in a healthy way, and proficiently, rather than worrying about where or why they are there. I'm still working on doing this steadily.  Not there yet, by far.

The criteria for Asperger's lists:
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(D) lack of social or emotional reciprocity

I'd go so far as to say it's not lack of sharing enjoyment that is near as much the problem as is lack of sharing duress.  Either I simply can't due to lack of words, or ability, or it doesn't occur to me do so, literally.  In the same way my family complains that they never ever have heard me say 'I want' or 'I'd like to have' X (signaling them what I might like to receive for Christmas and birthdays) I don't think about sharing what I feel or what I need.  When I do, it may be understated with emotion to the point that an NT would think it was a minor issue.  I was told by the clinician that diagnosed me that my face almost never shows any emotion, at all.  So, as I am telling someone how terribly sad, and depressed I am the flat affect of my face my not convey just how serious I am.  Even on the internet, I may not have the ability to fully express the amount of pain or suffering I am in or how much I'd like some assistance.  When I do, I feel so awkward and so embarrassed that it's likely I will delete it quickly.  Here, not as much, because it's an anonymous blog. I feel very vulnerable and almost ashamed of expressing emotion.  Writing by far is waaay easier than speaking, though.

So, I thought that perhaps my issue I had a couple days ago might be of some use to parents and loved ones of those on the spectrum if explained fully as to what happened.  Why it's hard for us to say we need help, and what the best method is to assist us in telling you ie; writing texting, ect...


  1. Your suspicion that others might benefit from your ability to share your experience is accurate. This is a very helpful perspective and I will carry it with me in my work with students and in my interactions with my own family as both my husband and my son are in the autistic spectrum.

    Asking for help is a difficult thing. I find it difficult myself because I am so often able to do things independently.

    It has taken me many years to understand that asking for help is not a sign of weakness or failure. It has also taken a long time for me to understand that even when people truly love and care about me - they may not sense my need - so my requests for help have to be very direct and explicit. Even though I have a complete understanding of this on a cognitive level - I often need to remind myself of this in the day to day goings on of my life.

    That being said, I can see how if you struggle with identifying and understanding and expressing your own emotional state - on top of the tendency that I have described - the whole situation becomes doubly (or more so) complicated and potentially snarled. I think I will be seeing the potentially subtle messages from my family in a new light.

    Thank you for sharing your post and perspective!


  2. I tend to not ask for help or let people know when I'm not coping. It's partly embarassment, but I think it's more (for me) because I dread advice. I tend to be very reserved and slow to take action. People often want to help by solving my problems, but that usually requires me doing things that I'm not comfortable with. It may be good advice and I may end up taking it, but it takes me a long time to work up to things and some things I'm just too shy or unconfident to do (although they seem like such simple things to others). In the meantime, I feel this weight of expectation that I should be taking action, which makes me stressed and anxious and guilty, and then I feel too ashamed to say if I'm still troubled.

    Sometimes advice is helpful, but I think most of us really just want to be listened to, to know that our feelings are valid, and to know that we are supported. I probably underestimate my friends and family somewhat, but I still find it difficult to deal with the sense of others' expectations.

    I'm really sorry that things have been going badly for you. I know it doesn't feel like it, but you are clearly coping extremely well considering how much stress you must be under (I don't mean that you aren't finding things difficult, just that you seem to be really consciously working to keep yourself in as healthy a place as you can and to try to deal with things, and I think you should be proud of yourself for that because it's very hard to do).

    ...I don't know if this is any help, but perhaps you could advertise at a university for an education or psychology student who might like to babysit, because they might be understanding of your circumstances and appreciate the experience. (There I go, trying to solve your problems! It's ok if you don't do anything about my suggestion!)


  3. Hi. I've been meaning to write something about this for my own blog, but I'll go ahead and reply to you here.

    As an Aspie, I've never found it easy to ask for help. For me, asking for help is hard for several reasons that are intertwined:

    1) Difficulty with trusting others that stems from social awkwardness and social deficits

    2) very negative experiences with adults while growing up that left me with deep psychological scarring

    3) failure to learn the social skills I needed to ask for help due to both a lack of intervention and the number of negative experiences I had. It IS a social skill we need to consciously learn like other social skills. We Aspies often forget that.

    4) alexithymia, like you discuss here--I would categorize my alexithymia as fairly profound for an Aspie and indeed it's a big factor, but in my case, not the only one

    5) executive functioning deficits--while alexithymia makes it harder for us to recognize, understand and articulate our emotions, EF deficits are what make it hard for us to regulate and respond to negative emotions constructively. For example, someone with EF deficits will likely try to handle their negative emotions on their own, because they have a poor sense of relation, causality and consequence associated with that emotion. If they feel a negative emotion, they first blame themselves rather than understand what's causing that emotional response. I did this for years with my bullying older brother. It was difficult for me to understand the negative processes in my relationship with my older brother than resulted with me feeling negative emotions. So I just blamed myself and tried to suppress the feeling. If I felt bad about anything, I thought it was me, not the thing making me feel like that. There was a huge disconnect in my mind between my negative experiences and the negative emotion I would feel as result of that experience. This is a poorly understand EF deficit that is common among autistics and the challenge is to work on developing a better awareness of the processes that lead to negative emotions, understanding that negative emotions are not a bad thing to be ashamed of(i.e. sometimes we have negative emotions to tell us something's not right) and learning how to channel negative emotions constructively--for example, learning to ask for help rather than withdraw, explode or push people away.

    Even though I'm far more aware of why it's hard for me to ask for help, it's still a big challenge. A work in progress, like with everything.

  4. Thirty Days, Thanks for your comment. It is hard to ask for help when we are the ones that are used to being the helpee, so to speak. That turn around from nurturing to needing nurtered can be a rough role switch that takes lots of practice, especially from ladies.

    I'm also glad that I can help give a new perspective into what your son, husband and students might be thinking. I too often see things get labeled as 'behaviors' (I really hate that word) by school and psych staff when there's a genuine need that the autistic person is trying to convey in the only way we know how, in our language. I'm thankful for any teachers/therapists that will take this POV in.

  5. Zaiene, I see what you're saying, too. I often feel like people are going to judge me, or see me as incompetent, or something if I ask for help. It's that fear of feeling inferior or less than that stops me from asking, even if all else in my mind and body is lined up correctly to do so. My ego gets in the way! I also feel like sometimes I might not like the feedback I'll get, but won't know how to say that politely, or something and the situation will get all awkward.

    I have done the university thing before a couple yrs ago with some success. I may try it again. One university was very happy to work with me looking through students that were going into careers for ASD people/kids. I really wanted a specific kind of sitter, as my youngest has such a very high level of need that something as small as leaving your purse with change in it out (he eats everything!), or leaving the door unlocked for a minute could result in a disaster. I need someone with a desire to work with such individuals and a ton of patience.

    Thanks for your words of encouragement! Appreciate it! :)

  6. Cade, Wow thanks so much for your reply! I totally get what you are saying.

    Where you say:

    "2) very negative experiences with adults while growing up that left me with deep psychological scarring "

    I think that contributes greatly to my own needs being pushed back in order to not have a repeat experience like that of childhood. I don't speak much on my blog about my family, but to say it short and sweet, my needs as a child were almost never considered, unless they were also meeting my mother's selfish, neurotic needs. If it got her attention and praise, and served a purpose for her to meet my needs and help me, then she'd do it, but otherwise, no.

    What you say about exec. functioning is really interesting, too. I knew that I had a rough time organizing my emotions, and making sense of all that I saw, heard, and felt, but it really never occurred to me that why I blame myself when I feel bad. This probably has more to do with my very poor self image than I ever realized! Thanks for very profound insight!

    I think that you should make a blog post about this. You clearly have so much to say. Your post really resonated with me.

  7. Thanks for the great post. As an Aspie, sometimes I really wish I could ask for help. Not just big, life altering help, but simple things, like, "Could you open the door for me?" when my hands are full.

    Why is something that seems so easy for NTs is so difficult for me? I must admit that often it just doesn't occur to me to ask for help, because I live in my own little world, but at other times I want help but don't know how to ask for it. Sometimes I'm embarrassed, sometimes I feel like I'll be bothering others, and sometimes there is no reason—I just hit the brick wall that exists between me and the rest of the world.

    "I don't think about sharing what I feel or what I need." Indeed, I don't usually think about these things until later, until the moment has passed, then it's all a matter of, "I should've, but didn't. Oh well…"


  8. Thanks for your comment. You brought up another important point, which is even asking for trivial help is difficult for us. I think that asking someone to open a door, or to pass you, or bring you this or that is a big social skill. It seems to come really naturally to NTs, but for us it's elusive. I know that I literally don't even think about asking someone to hand me something on a table because they are closer to said object. I will lean over them, or get up and walk clear around to get something. After many years of my husband complaining he finally told me it's considered bad manners and rude to reach over people or basically never ask them for anything as if they are not there. (like he'd go downstairs for something and I'd not ask him to bring something back for me instead of both of us going) Not only does it not come naturally for me to ask people for stuff, but when I do remember to do it I don't know if it's rude or imposing to ask, so I struggle with knowing how to implement it.

  9. I've been meaning to comment on this ever since you wrote it. This is totally how I feel about this kind of stuff but it is always challenging for me in some ways to see my own difficulties so clearly articulated by others.

    I've always been kind of pleased with my own self-sufficiency but at the same time wished that I could depend on others more. It isn't a lack of trust but it simply never occurs to me to ask for help. And in those times when someone sees the need and offers, I can't cope with that emotionally. I've been reduced to helpless tears at someone's thoughtfulness and I'm sure that is not what they intended.


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