Friday, December 21, 2007

Don't Hit Them When They're Down

On the Autism Speaks forum, someone posted saying he hated being autistic and wished he'd never been born, and advising parents with a high likelihood of having an autistic child to avoid having children. Another autistic person replied by attacking him and when scolded for that by another person, pointed out how serious the implications were of what the first person had said.
My instinctive reaction, when hearing an autistic person saying they think autism is a bad thing, is 'Oh, no, what will the curebies make of this?' I suspect that was why the other autistic person attacked him for saying that. Statements like that by an autistic person can literally cost people their lives.
A similar problem was described in the book The Courage to Heal regarding ethnic minorities. A Jewish woman and a Latina women both described being afraid to admit that they were sexually abused by their parents because they worried it would feed into negative stereotypes of their people. Muslim women have been discouraged from discussing spousal abuse for the same reason.
But we can't attack the victims, nor can we pretend there's no problems and no diversity of opinion. We can't censor people. I know I feel the temptation sometimes to pretend I have no problems, or that my problems are all unrelated to autism. But doing that leaves my problems unsolved, and feeds into the idea by curebies that 'we don't know what real autism is like'.
I've never connected this with autism, but I've certainly felt like a terrible, worthless person on occasion. I have not found being angrily contradicted and told that I shouldn't say those things helpful. Even worse is people agreeing with me. What works is to reach out to me and tell me that I'm a valuable person and that things won't always be so bad for me. Here's an example of the three ways to reply:

Depressed person: I'm a terrible, worthless person and I wish I'd never been born.
Other person: You're right. You are a terrible, worthless person. Don't worry, we'll find a way to make you worthwhile.

Depressed person: I'm a terrible, worthless person and I wish I'd never been born.
Other person: How dare you say such terrible things! No one is terrible or worthless. (except maybe you, the depressed person hears)

Depressed person: I'm a terrible, worthless person and I wish I'd never been born.
Other person: It's so sad that you feel this way. I am convinced that everyone is valuable, including you. I wish you could see how valuable you truly are.

There is no definite way to help someone like that feel better, but the last choice is the one most likely to work. Note that the last two choices both involve disagreeing with the person, but the last one diagrees by affirming the person's worth, which feels much better than being scolded for expressing yourself. It's important to remember that people who say such things about themselves usually have a long history of being criticized for things they say, do or are. That's why they feel that way. Intellectually, choices 1 and 2 are quite different, but the emotional impact is similar, and someone denigrating themselves is not speaking from intellect, but from emotion.

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Anonymous Anonymous said...

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7:14 PM  
Blogger stevethehydra said...

I actually (at least sometimes) find something closer to the first option most helpful - because, as i said in my recent-ish post here:

when i state facts, particularly negative-seeming facts, about my impairment or my life, i get a response which seems to assume that the purpose of what i said was to try to get the other person to deny it, or to "reassure" me that it isn't really true. This is probably one of the most frustrating and upsetting responses anyone can experience, and has led directly to the end of several friendships. A tip to any IRL friends/acquaintances who might be reading this - when i state something about my life, please don't contradict me. If it's something negative and i'm saying it in what seems like a despairing context or tone of voice (the latter, again, is not a reliable indicator of real emotion for me), then the response i'm looking for is not "reassurance", aka denial, but acceptance of the fact, or at least my perception of it, and suggestions for ways to change that reality.

(If i was talking to you about climate change, you wouldn't, or at least i hope you wouldn't, respond with something along the lines of "It sometimes seems like that, but climate change isn't that bad really, here are X, Y and Z reasons why - you just need to change your despairing attitude" - you would, hopefully and assuming we're on the same page in understanding that climate change is really happening, respond with ideas for activism against climate change...)

The thing that i think is absolutely worst of all in terms of kicking people when they are down is the response "well, if you have that attitude of course things aren't going to get better". The only thing that could possibly change my "attitude" (ie, my perception of my reality) is "things getting better" - so to tell me that is essentially not just to tell me that there is absolutely no hope for me, but to tell me that it's my fault that there's absolutely no hope for me - and that train of thought is the non-stop express to Suicide Central.

3:22 PM  
Blogger stevethehydra said...

Oh yeah, i don't want to have children, and a large part of my reason for that was that there was absolutely no way i would want my (likely to be autistic) child from going through the same sort of crap i went through growing up. I tortured myself for a while about that being not very social model and even possibly being internalised anti-autistic prejudice, and had a lot of disabled friends try to convince me that i *should* have children, then came to realise that, actually, the real reason that i don't want kids is primarily because, if i had a child, i would end up resenting that child's existence for the restrictions having that child would impose on me - so i wouldn't be a good parent to *any* child, regardless of whether or not it was autistic.

I still get accused of "self-hatred" for that though, even though that really, really isn't one of the issues that i actually do feel self-hatred about...

3:27 PM  
Blogger Ettina said...

Oh, yeah. I forgot about that issue.
In some cases (not this one, though) the person may seem to be saying negative things about themselves but are simply stating a fact. You have to look at whether that statement can be judged on its factual merits and whether it can be expressed in a way that is not blaming or derogatory to anyone.
For example awhile back I was telling my mother and father not to leave me alone with my brother when we were having an argument because I was afraid I'd hurt him. They took this as me trying to claim I was a bad person, but I was simply stating a fact. On occasion, I have in desperation lashed out at my brother, and my parents being present is quite effective at inhibiting this.
On the other hand, saying 'I'd have been better off if I'd never been born' is a statement that can't be judged on any factual merits and can't be taken in any way that is not very damaging to the person saying that.

8:25 AM  

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