Which is easier, being a genius or being delayed?
What is it like to look at the world, knowing one is isolated by disability, wondering how it would feel to have a job, a girlfriend, or a family? What is it like to be less disabled, to have "attained" those things, only to lose them, and be crushed by depression and despair? Is one role better than the other?
Some of my recent stories have touched upon the question of autism, disability, and the relative impairment or position of people at different points on the spectrum.
When reading the comments to my earlier posts I get the feeling that certain people with greater autistic impairment than me feel that their "less impaired" brethren - me included - somehow have an easier life. I don't agree with that. Life is hard no matter where you fit on the curve.
Several commenter's compared levels of disability in the world of friendships. One person said, "I have never even had a girlfriend," and the tone of his remark was such that I was made to think, Imagine how much that hurts. Well, as it happens, I know how that hurts because I've been there.
I didn't say anything at the time but I thought about his words and my own life. The memory of my time at Amherst Junior High is still as clear as yesterday in my mind.
I remember exactly how it felt to look at couples holding hands in the hallways, while wishing I had a girlfriend. I'd see them walking past, smiling and talking, and I'd feel so terribly alone. I'd look down at my own empty hands and ask, what's wrong with me? The pain of those memories is still sharp, thirty-some years later.
It was a big step up from the loneliness of grade school, which until then was the worst pain I'd known. At age six, being called a retard had hurt a lot. But at age thirteen, being totally ignored by couples and by girls in particular hurt even more.
It's hard to be alone when you're surrounded by couples. My solution was to retreat into books, machinery, and places where couples did not intrude. There were no couples in the electronics lab, or the auto shop. Most of the places I hung out, there were not even any people at all.
That was my method of coping for many years. I did not know how to begin a romantic relationship, so I hid. When I did pop into view, I gave my autistic mannerisms free reign to drive away any potential suitors. It worked. Romance did not have much place in my high school experience, with the exception of Cheryl, who led me on just to toy with me. That experience also remains with me today.
That's the place some people on the spectrum remain at as adults, compounded by years of experience of the same romantic failure. Some distract themselves by immersion in other interests, while others dwell on why something never worked out.
I remember that place well, because it was my own life until age eighteen or so.
Then I fell in love, for the first of several times. When it was good, I was so happy. Proud, too, to have such a pretty, vivacious girl be interested in me! Words cannot express how good it felt to leave my lonely and solitary existence behind. Unfortunately, it didn't always last.
"I just can't do this anymore. I can't keep seeing you." Her words came out of the blue to shatter my world. I knew there were issues, to be sure, but like all Aspergians I am very tied to routine. I'm very slow to change, sometimes seeming to discuss things endlessly before making a change. So her sudden decision to dump me came as a total shock. One day I was happy and dreaming of a future. The next day, it all lay shattered in the dust. The pain was far, far worse than anything I'd ever known. I read those trite words, better to have loved and lost, than to have never loved at all, and I wondered what planet that writer lived on.
When I learned about Asperger's one of the things that struck me false was the talk about empathy and emotion, and how people like me supposedly lack those feelings. Anyone who could see into my mind in that moment of darkness and torment could not fail to realize how totally wrong those statements were.
Yet I didn't show it. I was dying inside, but to the rest of the world, I was the same person as always. Inside, my heart was pounding and my mind was racing in ever tightening circles on a descent into darkness. But I gave no sign of the torment within. Can't you talk about it, people would ask me today? I don't quite know how to answer. Even now, in middle age, the sting of childhood rejection still lingers. I could go through that experience now, at 51, and I might well react just the same as I did at 21.
As I get older I seem more polished and sociable, but given enough stress, the old autistic behaviors rise to the fore. People say I have a childlike innocence, which is nice at times. But at other times, I can revert to a wounded and hurt little boy, and that's not good at all. I close down and suffer in silence.
There is little to help that kind of pain. Today, life experience tells me that things will usually get better. But does that message always get through?
When I read about how lucky I am to have met a girlfriend, found a wife, had a kid . . . I realize those things came at a price. They weren't free. It's true that the greatest joys I have felt have been with the people closest to me, but at the same time they have caused me the sharpest and deepest pain I have ever known.
So what would I say to those who feel their disability has prevented them from experiencing such things? There's no free lunch. In the end, we all want what we don't have. But does getting it make us happier? There's no evidence that it does.
We all tend to look up the ladder of achievement and dismiss the worries of the guy a few rungs above us. We think, "he's got so much more than me, he must be on easy street," when in fact he feels pain and worry just as we do, maybe even more so. You might ask why I'd say "more" . . .
I'll offer one stark piece of evidence. There is virtually no incidence of suicide among developmentally delayed (I'll use the emerginent PC term) people. If you have an IQ of 70, you may do many things, but deliberately kill yourself is not one of them. At the other end of the spectrum, history is filled with examples of geniuses and gifted, highly creative people who took their own lives in moments of despair.
It's said that one in thirty medical doctors dies by their own hand. Yet no one says anything. Can you imagine the uproar if one in thirty autistic people in a group home killed themselves?
Greater functionality may bring bigger "ups." But it also brings bigger downs. There is always a price, and sometimes it can be very high.
Depression and pain affect people at all levels of society, with and without disability. The idea that some people with autism are less disabled and therefore suffer less is simply wrong. We all suffer to the same extent that we experience joy. Some of us may feel those things in more muted ways, but even if we do, it's our life and it's all we know.
My pain is my pain, just as yours belongs to you. The fact that you think mine "should be less" because I am higher functioning does not make it any less real to me. However "easy" something may look to me, I now know that it may be a huge big deal to you. I hope to get the same consideration from you, because there is no way to guess when your "easy" may be my "insurmountable." And when we ridicule each other, it leads to a place no one wants to go. . .
It's one more reason that we should show tolerance and compassion.
Comments
Thank you for this. You are right. No one can walk in someone else's shoes. We can only know our own experiences. Life isn't a "suffering" competition. You can only write about what YOU know, from your perspective. I appreciate all I have learned from you.
It's just hard to find those places, where you can agree/disagree, establish a framework for discussion.
Maybe this is the way to do it, though, here, I wish you guys well.
i think any type of comparison is a dangerous game.
I am twenty six and still single. My experience with dating so far has taught me to expect to be suddenly dumped without warning, even when things appear to be good, and that the person will not want to talk to me even to offer an explanation nor to hear an explanation on my part. Being trapped and not being able say your piece has been a particularly emotionally damaging thing for. Yes we Aspergers have emotions; we just usually find out about them when we bleed.
You know, there are folks here in Fairfield County who used to make million dollar bonuses and who got none last year. Do I feel sorry for them? Not at first. But what if they had to pull their kids from prep school? That hurts. What if they might lose their house? That surely hurts, whether it's a mansion or a hovel. Driving through New Canaan you'd think no one has a care in the world - but it's not so. Why should thinking about personal pain be any different? I had three kids w/ out a Tylenol during labor and delivery. Another Mom wants an epidural the date after she gets pregnant. So what? Doesn't make me a better person, just earns me shocked looks at cocktail parties. Pain is relative.
As far as the suicide question, I'm not sure I get the point. I'd add, how many geniuses drown in ponds and pools or die in choke holds by inadequte caregivers or wander away from home and die of exposure relative to lower functioning people on the spectrum?
Have you seen the movie Adam yet? Will you see it?
That fact suggests that pain may be more intense or less bearable at higher levels of functionality.
In my essay, I simply suggest pain and stress is the same at any level though the causes differ. One one side of the discussion folks like Samwick seem to contend that the pain of failure is worse for less functional people. The suicide stats for doctors (as just one example) suggest something different.
My point was that we should be compassionate and not dismiss another's pain as trivial or less.
That does not mean I said you have no pain and no suffering in your life. I have never said you were never lonely. It is a given that no one's life is perfect. We all have our problems and adversities.
I think the point that I (and perhaps others) have tried to make to you, is that it is worse for us, because we can't have a lover or make a living. According to Freud to love and to work are the cornerstones of our humanity. I feel I have been stripped of my humanity and you have not. We have never said your personal problems don't exist, only that you don't understand what it is like for most of us on the spectrum.
The further problem is, as Samwick has stated, is that you tend to sometimes speak for the whole spectrum and not just for yourself. On page 5, of look me in the eye you stated that Asperger's is not a disease and there is no need for a cure. That may be true for you, but it is certainly not true for others who have HFA or even Asperger's.
The argument that you are deprived of essential elements of humanity by virtue of autistic disability is not one I'd considered.
The only generazilation I make in this post - and I think it's a legitimate one - is that all people's pain and suffering is valid and should be recognized.
The argument that your suffering is worse by virtue of disability is one for the philosophers, and one I'd welcome discussion on. In my essay, I tried to point out that the joys you say you've missed come with attendant pains that you miss too. For every good thing you miss, there is a corresponding bad one.
Could we say that autism has reduced the range of life experience you can have? Perhaps. But does it truly equate to you being less happy than me as a result? I wish I knew.
I do not perceive myself as particularly happy. And I know many other high functioning people who are much less happy than me. Given that, it's hard for me to think your state of happiness is lower than my own as I'm already living on the edge of depression. Yet it may well be.
So are you saying you live in a depressed state all the time, and your position on a depression scale would equate to your level of autistic disability? How can we know?
In my opinion, all we can do is recognise that each of our feelings is valid.
Love and lasting relationships are difficult for everyone no matter their story. People who you may consider Neurotypical, if you really look around, don't have it much better than you if at all.
Sometimes I feel like I may have Asperger's by proxy because I have never been able to have lasting relationships with anyone except those who have Asperger's. And, yes, that gets really lonely for me because I am totally the opposite when it comes to expressing emotions. In order to get an ounce of empathy, I have to have a meltdown and then explain it away!
Anyway, my point is that autism or not, disability or not, relationships are difficult at best and you are not really so different in that way.
As I see it, most NT's are so superficial, it's nearly impossible to really get to know them anyway.
Just my point of view.
Dawn
I spend quite a bit of time with a five-year-old on the spectrum. He has feelings; quite a few of them; and empathy, too. You just have to pay attention...
Having said this everyone's life has it's challenges.For some things are seemingly easier because they don't understand the real dynamics of what goes on in another person's life. Things may be different, but not necessarily harder...for different is just that - different.
I have five shildren with various neuro-developmental-biological syndromes, disorders, and non-verbal learning disabilities. Some also have co-existing ASD's.I can empathize with many of my children as I also have disorders of my own which allow me much insight. It is not just read from a book, and I never make assumptions. They are all high functioning, which can also be a double-edged sword. They, despite what many think have the ability to show much emotion, including compassion and empathy.
Supports, experiences and the people surrounding us help to make us into who we are. Our disorders and/or sydromes do not define us.
My job as a parent is to guide them along in life, not make it for them, or live life through them. They will all have varying experiences and how the act and react to such is their responsibility.
We all own our own thoughts, feelings, opinions and emotions.
Thank you for sharing. ☻
=*
Being human is not easy.
Life is not easy.
Relationships are not easy.
Loss, disappointment, frustration and despair are not easy.
Even joy can be overwhelming and scary.
On a scale of 1-10, how much does a broken heart hurt?
I would give it at least a 9, if not a 10. If I ask John what he would rate it, he might say the same. I've had friends who are neuro-typical, and in witnessing their distress and despair, I'd guess their rating would have also been a 9 or 10.
Who is anyone to say one person's 10 is lower in value than another's? This is why doctors use the Wong Pain Scale. The doctor wants to know how much discomfort that patient is having. It serves absolutely no purpose to know how it rates compared to another patient. "Sorry, the guy next to you has a more serious injury. Therefore, I conclude that you are not in enough pain for medication."
I am not going to tell you that being higher functioning is more painful. I will tell you this: when you spend a lifetime pleading with people to listen when you tell them something isn't right, I don't fit, I need help and they in turn deny you compassion because your intelligence or talent (obsession) blinds them to your despair ..... THAT is painful!
i think we all on some level learn to express these deep emotions in lesser states than infancy, but i also know, there's no such thing as emotionless in the autism world. it's been a while since i visited, and i can't even recall the blog, but there is running blog written beautifully by a non-verbal young woman who addresses this idea frequently. she can't express herself verbally, but what she writes goes to the heart of us all.
That fact suggests that pain may be more intense or less bearable at higher levels of functionality."
I don't agree with your conclusion. I believe that people who choose to end their own lives are at a weaker state emotionally, at least at the time they commit the deed, and this weak state may be caused primarily with the balance of chemicals in their brain at the time before and up to the time of death.
I also believe that if people knew the depth of the sorrow their death would cause those who surround them, suicides would be cut at least in half.
I do not believe higher functioning people feel pain more intensely than lower functioning people, or that they are less able to bear the pain. I think there must be other factors involved.
No, I'm not a professional, it's just my opinion, based on my own experiences and what I have read and observed over my lifetime.
In regard to people being aware of the depth of sorrow one would cause, rationality has nothing to do with it. Many people who commit suicide believe their loved ones would be better off without them. Others are mentally ill and are driven to self-destruct. Guilt, shame, self-loathing can be all-consuming. Despair is like a tunnel that gets smaller and darker. Eventually there is no room in that tunnel for loved ones or anything else that is rational. There is no light. This is why, other than restraints, you cannot stop someone from committing suicide.
In this thread, a really big part of despair that is missing, is introspection and torment. We are confusing pain with thought. I can't quote you the statistics but it is well-known that introspective people tend to suffer from depression more so than extroverts. Tests were done not so long ago that showed people who suffer from depression have a more realistic perspective.
It is not the pain alone that leads to suicide. It is what the person is thinking about, the intensity of it and the frequency. Circular thinking will suck someone into that tunnel like a vacuum. The more logically they are able to think, the more intense the circular thinking becomes and the more tormented they become. Pain alone will not make a person commit suicide.
What is easier? Some people can deal with frustration and hardship without experiencing despair over it. Some can't. That is part of the human condition.
Just as we can't measure the IQ of someone with lower-functioning autism, unless they are able to communicate, we also don't know how much pain they are in. Consider this though, autism tends to cause people to have a preferred sensory input. How many of them prefer abstract input? How many are able to visualize something imaginary? I have to wonder, not if they are capable of despairing thoughts, but if it is something they would choose to do. I don't think it is.
However, life's path sure would be clearer if we all learnt tolerance, compassion and a little respect.
My favourite quotation:
Sioux Indian Prayer
"Great Spirit, Help me never
to judge another until I have
walked in his moccasins."
Thank you Mr. Robison for yet another excellent post.
Depression is believed to be caused by chemical imbalances in the brain. I personally believe that there must be something going really haywire in the brains of those who commit suicide for them to believe that solution is the best. Not everyone who is depressed, even chronically, chooses to end their own life. I do not beleive that a person's intelligence or level of funtioning in society is a factor in their choice. I just believe that the conclusion that higher functioining people having more intense pain or are less able to bear pain because they are higher functioning is erroneous. Emotional pain is horrible for everyone, and for any of us to say one has more pain than another is not something we have a right to conclude.
The tests you refer to I would like to read about. Please post a link if you can.
Was that a typo when you said because you are Aspergian you can speak for everyone on the spectrum? I hope it is because I totally disagree. You cannot generalize your experience as an Aspergian to every Aspergian on the spectrum. It simply isn't fair. I think there is no reality just perception and how an event effects one person may have totally different and more severe effect on another. I think we all experience pain and some do more than others!!
If someone thinks that if they were in a relationship things will be OK - it is not easy. I have been married for almost 33 years to the same woman. I feel blessed to be married to her. The thing is that it has never been an easy relationship. If you are at any place on the Autism Spectrum it is a challenge for anyone that is in your life. My wife has built up defenses that I think has helped us survive as a couple, and hurt at the same time. In some ways we will never be as close as I would want us to be - yet it is more me that prevents us from that intimacy. And yet I know I can still learn...
And yet, people with Aspergers face challenges he may never face. More is expected of people with Aspergers in terms of being in the world and these skill may not come naturally. There is more of an expectation for people with Aspergers "to be normal" than there is on people further down the Spectrum.
I don't think any of it should be minimilized or trivialized.
http://hiddenwhispers.wordpress.com
Thanks for sticking your neck out to inform us from your view point. With continued exposure, maybe the "aspies" can learn to better tolerate our generalizations/grey areas, while we learn to connect in a more palatable manner.