Thursday, October 29, 2009

If You Have a Child with Asperger's

When I was a little girl, nobody knew the word Asperger's. My way of being was called "weird," "strange," "slow" and other equally nice things. Today, we are finally getting to understand that not everybody is neurotypical, that the variety of human difference is huge, and that, most importantly, it's ok.

Everybody on the spectrum is different. There is no single list of characteristics that would encompass all of us. Still, when I think about it, there is a whole range of things that people around me could have done when I was a child to make my existence easier. So if you have a child who might have Asperger's, these are the things you should consider:
  1. First and foremost, it is not the end of the world, a tragedy, or a reason to feel miserable. It isn't a disease or "a public health crisis", as some ignoramuses claim. It's a way of being that is in no way worse or inferior to yours. I believe that in some ways it might actually be better. There is nothing in this condition to prevent your child from being happy. Of course, she will be happy on her own terms and within her own way of understanding happiness.
  2. I understand the need that parents have to kiss and hug their child. Remember, however, that a child with Asperger's might feel a deep, visceral rejection for anybody's touch. This isn't personal, this isn't directed at you in any way. There are other ways to show affection. Why not show your child how much you love him by giving him the gift of life that is free from excessive touching?
  3. If you find your child staring at the wall and rocking, don't panic and, most importantly, don't interrupt her. This is her coping mechanism and, once again, it is in no way worse or less acceptable than your coping mechanisms. You might cope through over-eating, chocolate, shopping, alcohol, medication. Your child copes in this way. And it should just be accepted.
  4. These children desperately need their own space that will be respected and that will feel safe at all times. If you can't afford to give your child a separate room, you can mark off a corner of a room with screens, you can give him a box or a drawer where he can keep his things in the order that makes sense to him.
  5. When I was little, the scariest thing I could hear was "Go play with other kids." I remember the feeling of wordless desperation and deep terror at this command. My parents made desperate efforts to make me more sociable. I understand that they were worried about me but their attempts to make me what I simply cannot be were very hurtful. Asperger's doesn't mean that your child will not be able to have a social life. She will if she chooses to. But it will be on her terms and in a way that will make her comfortable.
  6. When I was 6, my music teacher told my mother that I was "cold and heartless," which made my mother cry for days. It also made me believe that something was profoundly wrong with me, when, in fact, something was wrong with this nasty teacher. In reality, our main difficulty lies not with having emotions but with expressing them in socially acceptable ways. Your child isn't cold or unemotional, he just doesn't express himself the way you do. And who is to say that your way is in any way better?
  7. The word I heard a lot to describe me when I was a child was "slow." Please remember that Asperger's comes with a set of neurological peculiarities (poor balance and coordination, difficulties with judging distances, etc.) that may vary from one person to another. This in no way reflects upon your child's intellectual capacities. We often have very high IQs and some very special and valuable skills. The price we pay for that often entails having difficulties with things that come very easily to other people. When you think about it, what's more useful: being able to ride a bicycle and tie your shoelaces in less than 10 minutes, or knowing how to amass, absorb, classify, categorize and be able to reproduce instantly huge masses of complex information?
  8. One of the central characteristics of our way of being is that we often develop an all-encompassing interest that we pursue single-mindedly and obsessively. When somebody interrupts our deep concentration on this interest, it feels physically painful. Just let her do whatever it is that interests her. One day this obsessive interest might even turn into a profession that will allow her to make a very good living (as happened in my case.)
Accepting somebody's right to be different from you, to experience the world and to define happiness in a completely different - and sometimes in exactly the opposite - way is the greatest manifestation of love there can possibly be.

Read more about this here and here.

P.S. I kindly request the haters to refrain from leaving comments. I never delete comments, except when they contain unsolicited advertisements. Here, however, I am willing to start deleting comments whose only goal is to promote hatred. Everybody else is welcome to leave comments about their experiences and suggestions.


feministscribbler said...

Clarissa, I really enjoyed reading this post. Thanks so much for sharing it. I liked your point on #6 -"and who is to say your way is any better" - so true!

Clarissa said...

Thank you so much!

Anonymous said...

Are the incapacity to drive and to lace you shoes symptoms?

What is "wrong" with me!?

On another light note, read Stieg Larsen's Millenium. Just for fun. You might like it.


Clarissa said...

I'm still waiting for you to send me your you-know-what. :-)

I have many symptoms and I will write about that in detail later on. However, I mastered the shoe-laces (more or less) already, so there is progress. ;-) God only knows what heights I will reach eventually.

Nothing is wrong with you or with me. We are just absent-minded geniuses. :-)

Clarissa said...

I'm actually reading something by this author right now. How funny is that??

NancyP said...

The "lace your shoes" comment resembles a favorite bit of family lore about me as a young child - but I don't remember the incident. Apparently I cried because I was being told to tie my shoelaces, and I neither wanted to bother nor had the coordination or attention span to do so.

The rocking, lack of interest in being touched excessively, shyness, late walking and talking, klutziness (though I blame some of that on late diagnosis of nearsightedness at age 7 or 8), and ability to throw myself into some subject of interest for hours, while having the attention span of a flea on other topics - that's me as a child.

I don't know how useful it is for a child to be aware of being labeled. In my day, I was just an odd kid. My main problem was getting bullied or excluded from some group activity by some of the other children.

codeman38 said...

Just a random accessibility thing-- would you mind removing the fancy colors from the post? I find them hard to read against the orange background, particularly in #2. Thankfully, I was able to read them by doing the View→Page Style→No Style thing in Firefox, but not everyone may have that option...

(Here via the Feminists with Disabilities blog, incidentally.)

Clarissa said...

Thank you for mentioning this, codeman38. I know exactly what you mean. There are some blogs that I can't read because their color scheme hurts me.

codeman38 said...

Thanks! Much easier to read now.

Oh, and related to #7... one of my personal annoyances is that I'm good with programming computers and spotting bugs in software, but because my sensory quirks make it so difficult to keep track of moving traffic, I still haven't gotten a driver's license yet.

And yet, people somehow find it strange that someone would be able to program a computer but not be able to drive a car— because the latter is "so much easier" to them... ::headdesk::

Clarissa said...

"I still haven't gotten a driver's license yet.

And yet, people somehow find it strange that someone would be able to program a computer but not be able to drive a car— because the latter is "so much easier" to them... ::headdesk::"

-Exactly!!! I hear people tell me so annoyingly often: "You are so smart, of course you can learn to drive! You just don't want to." There is simply NO explaining that it isn't about being smart. It's about how my brain works.

Anonymous said...

The driving thing drives me up the wall :P I got my license this year at the age of 29, after lots and lots and lots of practice with the information overload and processing that it requires.

But I still don't see why people push someone with no depth perception to drive. With so much practice, I've learned to compensate, but it's not easy. And without having learned to compensate, it's dangerous!