Worried
Mother
Sep 25, 2010 - 3:11PM
"Imagine a world in which it is
perfectly acceptable for a person to come to your house, destroy or
steal your things, torture you, and leave. Imagine being forced to
endure the pain, to watch your things being destroyed. Now imagine
that it is not acceptable for you to be unpleasant to this person.
Imagine having to smile at them, act as though you enjoy their
presence and the things they are doing. Imagine a world where people
said things like "I'm sure the pain isn't that bad, and you
recover anyway", "You can always get new things", and
"Why do you always treat them so rudely? Make an effort to be
pleasant!"
Don't say to me "It's not such a big deal"
or "We invite the visitors". You invite the
visitors, not me. And what they do is a big deal to me. They hurt me.
They're loud. They're disruptive. They throw me off. They get in my
way. They disarrange things. They make messes. Some of them invade my
privacy. They carry germs. They're inconsiderate. They touch things
without asking. I spend most of my life putting back into order what
people disorder. I HATE having my order disordered. It's vandalism.
"Oh, you can easily fix it." But I wouldn't have to
fix it if it weren't for you. Here, let me open all the doors of your
car and turn the alarm on. Oh, come on. It's so easily fixed, after
all--surely that makes it okay! And if I do it with a smile, it's
even a pleasant thing; you should smile, too! Here, let me run my
fingernails across this chalkboard again and again. If it doesn't
bother me, I can't see why it would bother you. Suppose most people
enjoyed this noise. Would it hurt you any less? So stop playing your
music like that--I don't want to hear it! Don't tell me it can't
possibly bother me as much as I say it does.
I understand that I
have to live here. When you invite people over to destroy my order,
disrupt my life, cause me pain, I won't attack them. I won't try to
kill them or drive them away. But I WILL NOT smile at them. I WILL
NOT pretend that I enjoy what they are doing. I will avoid them. I
will not stab them. But don't expect me to act happy that you have
invited these... these....
Just DON'T."
One of my
daughters is a high-functioning autistic. She gave me this yesterday
and I don't know what to do about it. We haven't got the money to
send her to an institution, but we can't stop inviting people over
just because she doesn't like them. What should I do?
Website
How big is your house? Is there enough space for your daughter not be around the guests e.g. she's stays upstairs while they stay down stairs?
Worried Mother
Oct 19, 2010
- 7:57AM
Unfortunately, our house is relatively small. We have only one floor, and the walls are not soundproof. Besides, I don't like having our oldest daughter hidden in her room whenever people come over. It seems like I'm always saying something like "Our oldest? Yes, she's hiding in her room. Just pretend she doesn't exist." It feels like she's not part of our family. Autistic or not, she needs to learn how to interact with others, doesn't she?
That's not necessarily true. She's not
being a spoilt brat, she genuinely finds dealing with guests really
distressing.
There's always an arguement about whether
autistic people should learn to behave in a way that's acceptable to
mainstream society vs. society should be more understanding of
autistic people. If I went round someones house and knew that thier
child was autistic and didn't like meeting new people. I wouldn't be
offended at all. I know your intentions are good (and I really don't
want to offend you), but she is part of your family and nothing will
change that, including her being in another room. Do your guests
actually ask to meet her, or do you think it's the appropriate thing
to do?
Worried Mother
Oct 19, 2010
- 10:49AM
The problem is I'm not sure how much
she could improve if she really tried, or how hard it's okay to push
her. How much of her behavior is under her control? I don't know. And
while I don't want to push her too hard, I don't want her to be less
than she could be, either.
I suppose it's not so much that she
doesn't seem like part of the family as that she doesn't seem like
part of this world. She hardly ever says anything, stays in her room
most of the time, and only ever seems to be (at most) half there. I
know she's intelligent and talented, but I don't feel like I know
*her*.
We usually invite over family friends, people who knew
her when she was younger (before she was diagnosed) and they want to
see how she's grown. I'd also like to show her off a bit, I guess.
I'm proud of her. Do you know she writes her own harp music? But it's
like she doesn't want me to be proud of her. She barely notices me
half the time, walking around everywhere with a book in her hand and
a blank expression on her face. It worries me. She's nineteen years
old. She should have at least one friend, right? But she has no one.
She talks to no one, goes nowhere.... Surely it doesn't have to be
like this?
I don't think you understand autism at
all. The way you are trying to push normal behaviour and expectations
on her makes me wonder if you have any clue whatsoever about autistic
people. It's compareable to you yelling at a blind person for not
seeing. She is not your prized curiosity that you show off to your
friends either.
You should be more worried about your own
behaviour and inability to grasp what you are dealing with.
Worried Mother
Oct 19, 2010
- 12:15PM
It's true that I don't understand autism very well, though I've been reading up on it in my spare time... (Spare time? What's that?) It's a difficult subject. Every autistic person is very unique. I want my daughter to be the best she can be, but I'm not sure what that would look like, so I don't know how to help her. Of course she's not a thing I can just show off. But when you're proud of someone, don't you want people to see how amazing they are?
You remind me of my mother. She's very
sociable, a people pleaser to be honest. She always pushed me to mix
with people who were not very nice to me. Even when I said I didn't
want to. She made out that there was something wrong with me. Even
thinking about it now really upsets me. For all her love and
affection, her need to please others has really affected her
relationships with me and my other siblings. It's gotten to the point
where I've accepted who she is and I've accepted who I am. I'm
naturally a quiet person. I like my own company. That's not a bad
thing. In fact her insistence on forcing other people on me has made
me even less sociable. Almost like a reaction against her. A reaction
to protect my own personality.
Your daughter is 19. She's an
adult. She keeps to herself and stays in her room because she feels
happy there. She feels safe. Do you want her to be unhappy? Because
from the letter she has written you, she clearly is. You can be proud
of her without physically showing her off. She plays the harp. That
is amazing.
Worried Mother
Oct 19, 2010
- 3:15PM
Of course I want her to be happy. That's why I want her to learn to get along with people. After all, her father and I aren't going to be around to take care of her forever. If she truly can't learn to manage by herself, then we need to find somewhere safe where she can live for the rest of her life. But if she can learn, then I want her to! Asking her to smile and say hello to family friends seems like a good first step. I don't mind if she goes to her room after greting them - I just want her to show herself and be polite first. It doesn't seem like such a big deal to me... smile, say hello, leave. They're *friends*, not monsters. All she has to do is say 'excuse me' and go to her room if they're upsetting her. They won't force themselves on her. They know she's autistic. So why does she hate them so much that she'll try to chase them off with a skinning knife? (That was a nightmare. We're still friends, but I doubt they'll be visiting anymore.) I am proud of her, but somehow it seems that people only ever see the worst side of her. I want her to be able to show people what an amazing person she really is, instead of flipping out on them!
Quote:
Originally Posted by Worried Mother
I want... I want... I want... I just want... I want...
Do you see where I'm going with
this? I'm not trying to twist your words, it's just that maybe what
you want is obviously not what she wants. Maybe being sociable is not
an essential aspect for her life. I know your friends are not
monsters, but they are your friends, not hers. She's not obliged to
greet them, especially when she finds it so distressing.
I
can totally see your perspective though. If she wasn't autistic, she
could just move out and live her life the way she wished. But instead
she's reliant on you. Is there any help for your family? Any
charities or community programmes? In the UK (where I'm from) there's
a national charity who do a 'buddy programme'. A volunteer comes
around and takes out the said person for the day. Are there any steps
for your daughter to become more independant? You said she was high
functioning. How capable is she?
dr. robert
Oct 20, 2010 -
4:21AM
Dear Mother--
All of us want
some level of organization and predictability in our lives. For
example, I expect my computer desktop to look in the morning the same
as when I left it the previous night. If during the night someone
came in and rearranged all the folders so that I could not find what
I was looking for, I would feel upset for sure. If that person then
told me that she was only rearranging things to make them better for
me because she knew that I, being a disorganized person, would
benefit ultimately from learning to be more methodical in my approach
to life, I would feel angry--angry for not being seen and appreciated
for the way I am, not the way she wants me to be--and angry for
having my world upset to bring it into accordance with someone else's
ideas of how I should live.
I imagine you are the same about
aspects of your life and your space--you want and need a certain
level of order and predictability according to your own
definitions and desires, not someone else's. Please try to understand
your daughter from that point of view. Yes, her autism makes her
different in certain ways, but not in this one, which should and must
be respected. I have never met a human being who did not desire to
have some level of control over her own space.
I do understand
that you hope to teach this young woman to be different from the way
she is, and that you imagine that changing her approach to life would
be for her own good, but go slow please. Force is not the
way.
Be well.
p.s. Well done, xXx.
Worried Mother
Oct 20, 2010
- 9:35AM
Quote:
Originally Posted by xXx
what you want is obviously not what she wants.
But all she wants is for things
to stay the same! That's not realistic - it won't happen. But she
doesn't want to learn anything in preparation for any kind of change
at all. She can't talk to people, she can't drive, she can't make
herself any food more complicated than a sandwich (and she always
needs to be reminded before she'll realize that she's hungry), she
can't get a job, can't make friends - and she's *satisfied* with
that! I understand that she's happy spending all day in her room with
her harp or wandering around the house with a book, but she can't
live like that forever.
We live in the US... there are no
charities or community programs. It's just us, and I don't know what
to do. Is it okay to let her continue like this? Can I really do
that? I don't know what to do. I don't have a list of steps to help
her be more independent, but I'm doing my best to come up with them.
I'm not trying to make her sociable... just socially able. How will
she manage in the world if she can't so much as smile at people and
say hi? If she could just master a few basic social skills, she'd be
perceived as 'quirky' rather than 'freaky'. Aside from feeding
herself, she's fairly capable. (I say 'fairly' because she does
everything according to a set of rules that only she understands, and
I don't know what would happen if she had to do something
differently. But she handles day to day life very well in a strict,
regimented kind of way.)
Quote:
Originally Posted by dr. robert
I imagine you are the same about aspects of your life and your space--you want and need a certain level of order and predictability according to your own definitions and desires, not someone else's. Please try to understand your daughter from that point of view. Yes, her autism makes her different in certain ways, but not in this one, which should and must be respected.
I don't understand... are you
saying that I should stop inviting friends over because it upsets
her? Or just that I shouldn't ask her to say hello to them? Both
these things mess up her preferred level of order and
predictability....
Quote:
Originally Posted by dr. robert
I do understand that you hope to teach this young woman to be different from the way she is, and that you imagine that changing her approach to life would be for her own good, but go slow please. Force is not the way.
I don't mean to force her, but I
don't know how to teach her when she doesn't want to learn. Surely
it's not okay to leave her like this when she could learn and
improve?
dr. robert
Oct 21, 2010 -
4:41AM
The problems presented by autism are
many and varied, and I certainly do not have a solution or quick fix
for any of them. I did not say that you should refrain from trying to
help your daughter to find ways of being more integrated into the
larger cultural surround, but that you should go slow and minimize
the amount of pressure and coercion. Although your daughter's
emotional needs may seem bizarre and quirky, most of them really are
no different in kind from the needs of any of us--just their
expression is different, and if this is understood you may find more
effective and gentler ways of trying to help her meet them while
becoming more integrated socially. I know this is a challenge, but
what else can you do?
To answer your specific question: I do
think you should have guests in your home whenever you like, but you
should not, in my opinion, ever coerce your daughter into interaction
with them. It is her right to avoid such contact is that is what she
wants or needs.
I sympathize with your situation which
certainly is difficult and seems to have no real resolution. I simply
suggest that you go slow with any changes of routine while trying to
see things through her eyes when possible. If you think I am wrong
about this, I suggest getting other opinions from autism experts
(which I am not).
Be well.
Worried Mother
Oct 22, 2010
- 8:12AM
You put that very well. Thank you... both of you.
