Wednesday, November 6, 2013

Autism and Shame

At the end of the week when I literally wrote the chapter on shame (in my book Recovering Agency: Lifting the Veil of Mormon Mind Control), I found myself curled up on my bed, sobbing, in the throes of a meltdown, feeling like the worst person on earth -- feeling vitally broken in all the ways that count -- feeling like the unresolvable source of pain for everyone around me. 

And I was helpless to watch from somewhere within, knowing I was suffering from shame, but unable to think my way out of its cage.

What is shame?

The concepts of guilt and shame are frequently confused with one another. They both seem triggered by the same stimuli. Yet they are two distinct feelings with quite different implications and outcomes. 

I've seen two definitions of the differences that ring true to me.

The first is that shame is related to your social position, while guilt is a personal feeling. That is, shame requires your sense of relation to others -- you have done something and others are exerting pressure on you to stop. OR, if they don't know what you've done, you are afraid they will find out because if they did, they would exert pressure on you. Whereas guilt is the knowledge that you've done something wrong, and you feel remorse and a desire to correct the behavior regardless of whether anyone else knows about it.

The second difference is perhaps the most enlightening. Guilt is about what you have done; shame is about who you are. Guilt is, "I have done something bad". Shame is "I am bad".

Brené Brown gave two powerful TED talks on the concept of vulnerability that both focus heavily on the concept of shame. I cannot overstate this concept enough, so I will repeat it in her words: "Shame is a focus on self; guilt is a focus on behavior. Shame is I am bad, guilt is I did something bad."


Shame, no matter how powerful it feels, does nothing to alter behavior. Usually shameful feelings arise around behaviors which are difficult to correct, and so the motive to change quickly devolves into defensiveness or into hiding shameful behavior. Shame has been shown to be highly counterproductive in combatting addictions, for instance. 

Guilt, on the other hand, can be useful in combatting behaviors. It is a sincere remorse and a drive to become a better person. Within guilt, there is the possibility to improve. Because there is no sense that the core self is damaged.

But when the self is inherently broken, then what is there to fix? Nothing.

According to Brown, shame is so painful because it makes us feel unworthy of acceptance. It makes us feel alone. 

To me, the feeling of shame is very closely related to the feeling of rejection. Both tell me I am unworthy of acceptance. Both emotions seek to push me from the tribe. Both say, "You are not enough like the others to belong."

A recent fMRI study on rejection showed that being rejected activates the same regions of the brain as physical pain. According to the article, "As far as your brain is concerned, a broken heart is not so different from a broken arm." Researchers also found that this kind of emotional pain can be treated by taking Tylenol. (Keep this in mind next time you are tempted to wield shame as a weapon. If you are unwilling to punch someone, perhaps you shouldn't shame or ostracize them, either.)

So here I am. I know all this. I've spend decades getting healthy, reading all the self-help books, going through the therapies and support groups and memorizing daily affirmations. I have literally written the chapter on shame. I know better. I am even surrounded by people who I know love me, even though I hurt them sometimes. 

And yet I still find myself on those dark nights, hating myself with every fiber of my being. Feeling like a horrible, worthless creature.

How do I get from Point A to Point B?

Because I have Asperger's

I have a constant sense, when dealing with people, that sooner or later, I am going to say the wrong thing. Eventually, out of nowhere, the peaceful pond is going to erupt into a geyser. I spend significant energies managing that pond, keeping it still, but it always erupts.

From childhood, I've known this. This incontrovertible fact of life has been a part of me. I have been unacceptable in so many ways, being a nerd, being an introvert, but the worst crime of all is making social faux pas. Of thinking differently. Of thinking so differently that perfectly innocent utterances randomly cause people to cry, or turn away, or lash out, or get angry, or accuse me, or cease being my friend. I'm not so impaired as to be unable to recognize when I've done something wrong, though perhaps my brain should be merciful enough to grant me this relief.

My young self learned that the consequences for making such mistakes could be severe. The trauma built up over the years, compounding the punishment for screwing up. Now, not only do I have to deal with another person feeling bad because of the mysterious thing I did wrong, but I have to also deal with my own fears and pain which have been building into this near-PTSD level.

Putting in the effort to avoid these mistakes only works for so long. Because I have Asperger's. I will miss the social cues. Sometimes, everyone misses the social cues, but I have had a lifetime of doing so. 

What may be the even more important distinction, I don't have the skills to recover from social mistakes. I can't gracefully apologize or flatter or smile my way out of trouble. I'm usually still stuck on Step 1: flabbergasted, trying to understand where I went wrong.

For those of us on the spectrum, this is normal. We live life in the face of continual negative social feedback and the constant making of incomprehensible mistakes. And it is here where the dangers of shame lurk. Where no matter how many times I tell myself how wonderful and likable and lovable I am, I still find myself on those dark nights hating myself. Because I'd done it again.

It is very easy to feel like nothing I do will improve my ability to be acceptable. After trying so hard and making so many mistakes, eventually I can't help but think of myself as intrinsically broken.

This topic is particularly important. I hope healing professionals and researchers will look into it on a scientific level and counsel their ASD clients accordingly. But it's possible they won't for a long time. 

And yet, they should, because suicidal ideation is 28 times more likely for autistic kids than neurotypical kids. To me, this comes as absolutely no surprise. Aside from my own struggles with suicide, we already know from other research that three things are needed for the risk of suicide to be concerning: 

  • Thwarted belongingness (I am alone)
  • Perceived burdensomeness (I am a burden)
  • Capability (I am not afraid to die)

Shame sends two of these three messages: 
  • I am intrinsically unacceptable which will make me always be alone
  • I am inherently unfixable and therefore will always be a source of trouble for those who do love me.
And shame (and resulting anxiety and depression) causes so much pain, that the third ingredient is an easy leap. After suffering long enough, suddenly death seems like a relief.

It is this deep sense that we will always be unacceptable that makes autists more likely to ideate. So the real question is, how can we help autistic kids and adults feel acceptable in a world full of people who struggle to understand us as much as we struggle to understand them? Especially when we continue to bear the brunt and blame for the misunderstandings?

Solutions

The day is far, far off when we can expect much from the world at large. But there are things we can do for ourselves, and, if we're fortunate enough to have a loving, and capable support network, we can help them understand and so they can give us what we need.

Affirmations. For starters, when I feel this way, I often find relief from reading the well-crafted and autism-specific affirmations by Liane Holliday Willey which are posted on the WrongPlanet forums. These work most of the time, except for when, for whatever reason, I'm feeling overly cynical and don't believe them.

A great song full of affirmation-in-spite-of-flaws, that almost always makes me cry, is Alanis Morissette's "That I Would Be Good".

Self-acceptance for an aspie means accepting that you are fundamentally different. Because of these differences, there are many behaviors that will always be difficult or even impossible for NTs to accept, and you have to accept that, too. 

Identify your aspie superpowers. These are examples of how ASD makes you particularly awesome. They are the other side of the coin, your X-ray vision to the kryptonite. For examples, see the two links at the beginning of the paragraph. Come up with your own list. During shame-filled times, go over them and remind yourself of your strengths.

Consider coming out. According to Brené Brown, shame requires secrecy, silence, and judgement to survive. Without these things, it will die. Consider finding a safe space, free of judgement, either with safe family, or safe friends, or with a therapist, or online at a place like WrongPlanet. Bring your shameful moments to light. If you feel judged, then go back into your shell until you do find someplace safe.

If you can, explain your condition to others. Point them to online resources and descriptions. While that doesn't necessarily help keep you from making the same mistakes and hurting people with them, it may help people feel less offended because they understand that the source of your mistakes isn't intentional.

The debate rages over whether autism is a disability, but here it may be useful to think of it as one. NTs don't have to struggle quite so hard to be understood or to avoid being misunderstood. Even though those behaviors are caused by your disability, you must separate your behaviors from who you are

Remember that if your disability were something more obvious, like inability to walk or see, it would be unthinkable to shame you for avoiding stairs or not looking people in the eye. Sometimes you will miss social cues or not understand what's going on or forget someone's birthday or be late or dozens of other things. While this isn't an excuse, nor does it mean you should stop trying to do those things, it also means that if you fail them, it's nothing to be ashamed of. 

There may be unhealthy people in your life who are compounding the issue. They may be incapable of separating behavior from the person and may be reinforcing shame while you are struggling to overcome it. That is something NTs also deal with, and is a subject of a great many books and therapies. When it comes to feeling shame and dealing with abuse, we're not terribly different from NTs, and those materials should be helpful. Just keep in mind we have additional factors which compound the issue, and we may feel shame and rejection more strongly or be more easily triggered by it.

And lastly, here is a post by another aspie who also struggles with shame, and how she deals with it. 

No Shame

I once overheard a caring mother say of her daughter, "She has no shame. She has Asperger's. She is incapable of shame." This mother meant well -- what she meant is that there are some things aspies do without regard or care to social customs. In that sense, we have no shame. 

But in other areas, where it matters most, we know all too well that our lives have been one steady stream of rejections and social pitfalls. We walk cautiously through a minefield of shame.

We can build up heavy defenses against them, sometimes becoming unapologetic or defensive or even aggressive to avoid touching those mines. Other times, we take the timid approach, avoiding people whenever possible and accepting blame instantly, even when we don't know what we've done wrong. Sometimes I oscillate between these two extremes in the course of a single evening. 

Nevertheless, shame is a barrier to intimacy. If we can find ways to grapple with it, no matter how powerful it seems, we'll have more opportunities for closer connections and freer, happier lives.

10 comments:

  1. Wonderful! Thank you. (For me) the timing of this post is uncanny. As an occasional self-diagnosed Aspie, I tend to avoid much introversion, as I generally find it unhelpful. I find I'm happier if I just get on with things. But for whatever reason, today I have been thinking about whether I am indeed ASD, and what - if anything - to do about it.

    Of course there is no "one size fits all" for people with ASD, and it manifests differently in everyone. So... I was thinking about the feelings of shame that I occasionally experience, and how this fits in with the stereotypical ASD emotional disconnect. I was snooping around on WrongPlanet, and saw the link to your post. Very helpful and interesting. I look forward to reading it again later... thanks again :-)

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    1. Thanks so much for your comment! I'm glad this was good timing for you.

      Yes, aspies are very different from one another.. they say if you meet one aspie, you've only met that one aspie. This is a great case in point -- I don't think emotional disconnect is an aspie trait. I think some aspies are emotionally disconnected, and others are very self aware. Still others are very aware of the emotional states of others. I have always been extremely introspective, to the point where I consider it a special interest. We all have our own talents.

      Let me know if you have any other insights.

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  2. Oh. You. The words. Putting the thing into words. I watched the whole Brene Brown thing. I am familiar with her work, I've engaged in a discussion about shame in autistic space. And I still think. It's the judgment that kills us.

    You. You. Your words. So powerful. So triggering. So. Yes.

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    1. :') Thank you. I just read your post on fear, and it is equally powerful. Hugs.

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  3. I remember a story by Stephen R.Covey about a man and his children that got on the subway. The children were running around, bothering the other passengers, being noisy, fighting and generally out of control. The father seemed totally oblivious to the behavior of his children. Finally a passenger (it might have been Covey) leaned over to the father and asked him if he couldn't see that his children were out of control and bothering all the other passengers and could he please get them under control? As if coming out of a dream, the father came back to the reality of the situation and with tears building in his eyes said "I'm sorry, I didn't realize. We just left the hospital where their mother died". When comparing this to someone I love, but with whom I have struggled to have a relationship her whole life, I feel like the passengers on the train. Being confused in the past with what I've been witnessing.... then having an understanding opened to me with an explanation for the confusion, and a sadness for the pain that I didn't see was there.
    This example is as a page from a much longer book, paling in comparison to the life long struggle of the lack of a meaningful relationship with this important person in my life. I have often mourned the loss of said relationship. I hope now to be able to understand how to begin to build that relationship. Thanks for your insight and hard work in struggling to understand yourself and helping us to learn how to understand. xo sis

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    1. I remember that story. It's a good story and one I try to keep in mind. Everyone has their reasons for acting like they do and being who they are, even the worst people.

      I have those same hopes. I'm glad my posts are helping with that. It's a very nice and unexpected benefit from writing them. Your comment means alot to me. As do your efforts to understand.

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  4. I have significant issues with shame myself from my childhood, at home and at school. This is a really excellent post and pinpoints a lot of my own difficulties.

    Have you read anything about complex PTSD? Some of what you described reminds me of literature on it that I discovered recently. I was astounded how the concept pulled things together for me. (To the point where I almost feel like none of my neuroses are native to me and am slightly disappointed. ;-))

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    1. Thanks. :)

      I've read about PTSD (and experienced it) but not complex PTSD? It's all pretty complex to me.

      Intense World Theory suggests that people on the spectrum are more sensitive to trauma and wire PTSD more easily, i.e. with less external trauma, and that we tend to generalize the triggers more than neurotypicals. The implications of that are interesting, and it makes sense.

      Have you looked into EMDR? I had some success with that for working out some of my PTSD. Other stuff I just did talk therapy and worked things out on my own, like self-soothing while exposing myself to triggers. I have a book that helped with my sexual PTSD: The Survivor's Guide to Sex.

      CBT helped reduce anxiety and social anxiety, but in the end, meds were the only thing that got rid of it for good.

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  5. My problem is that my parents specifically used shaming as a training tool when I was a child. I remember overhearing them discussing that it's more effective and proper than other forms of punishment in controlling "bad behavior" in children. That was not unusual in those days of "psychological" and "modern" childrearing.

    My tantrums and wild episodes weren't bad behavior in the ordinary sense, of course. So it never worked. What it did accomplish was to make me so ashamed of who I was that all I wanted to do was die. But as my older sister so cruelly put it, people who contemplate suicide are nothing but cowards and weaklings because strong and religious people like her never have such negative thoughts.

    So things just kept going downhill and now my head is full of all this garbage I can't seem to clean out. I'm certain that I would have been better off to run away from home and live on the streets than grow up in that crazy family. They're all deceased or suffering from dementia now, but all that shaming is still working on me every day. I live in fear of making any kind of social blunder.

    And of course, since I'm autistic, I can't help doing exactly that. So on and on it goes. It helps that I live alone and avoid people now, it really does.

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    1. That's terrible, Nighthawk. Shaming never works and only makes people feel bad about themselves. You're not a coward for having suicidal thoughts. I want you to live, of course, but struggling against suicide is a difficult battle, and every day you stay alive you are being more brave than anyone else can really understand. (Did you see my post on "The Year I Survived Suicide?" http://www.lunalindsey.com/2013/09/the-year-i-survived-suicide.html )

      There's lots of things you can try, that may or may not work, to help eliminate that shame as much as possible. Brené Brown has a website that I think I linked to here, with lots of resources to help people eliminate shame. There's also therapy, if it's an option to you. And self-help books. Cognitive Behavior Therapy works for lots of people with depression, anxiety, and shame issues. A good book on the topic is "Feeling Good" by David Burns. And in my case, I was able to find meds that really helped with the anxiety. Sort of like if you can come at it from multiple sides, it helps lower all these different sources of the problem to make it more manageable.

      Hugs and I wish you well.

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