The Truth of the Situation

After my last post, I got an email from a lady named “Nan,” who was wondering if I could explain to her a bit more about what I meant by “truth.” Hesitantly, I agreed, and what you see before you is the answer I gave her.

——-
There is no one truth in the world of autism. There’s the truth of the situation; the truth of possibilities; the truth of reality; the truth of expectations . . .

Some parents look at their autistic kid and that’s all they see. They see what’s not there. And they see what won’t happen. They think to themselves: I am a good person; my spouse is a good person. There is nothing wrong with us. We didn’t do anything bad that would make us deserve this.

Therefore, it’s someone else’s fault. Something else’s fault. And if we could find that something else, we could make it stop. And then we could have a real child — our child — instead of this sub-standard thing we have before us.

Imagine if they were parents of a physically disabled child who could not walk. Imagine if they were to say, “My child is worthless because he cannot walk. It is someone else’s fault. Therefore, we’ll put our faith in something that is unproven and let doctors pump our child full of chemicals so as to make them better — and then they will walk and we will be happy.”

We can’t be happy with what there is, because there should be more.

And the autistic child picks up on that. I’ve talked online to people who are either still considered ‘low-functioning,’ but can type, or else they were at one time considered low-functioning. Parents either talk around them like they aren’t there, or they can pick up on the vibe that they are lacking, that everyone thinks they are less than they are, that they are worthless.

I know that vibe. I got it from my teachers in my 2ndary education. I got it from my peers.

It is the “you are shit and are not worth my time, my hopes, or my confidence.”

But if we can find a cure, then you will be fine. Until then, all that you are is less than what you should be.

So truth refers to what people have to put up with on a daily basis, sure. But truth also refers to your belief in your child; in your love for them to grow into as much as they can be and beyond — not because they should, but because you love them and the strength of your love for them will overcome all adversity. Does that mean that an severely low-functioning autistic child will go out and become married and produce grandchildren just because you believe in them? Unlikely. That’s the truth of reality. Then again, you look at the people who are identified as low-functioning by the world – Ballastexistenz comes to mind, but there are others — and you begin to understand that the standards of reality that we squeeze ourselves into are really arbitrary social rules of society and really, there is much more beyond just what something appears to be.

And so you look and you watch and you wait for things that are beyond expectations; beyond the set standards of what is supposed to happen, what is “normal;” you wait and when you finally open your eyes to the possibility of beyond, then you begin to see the wonder that is your child and his or her life. They may not be able to talk, but they can sing. Or they can play the piano. Or maybe they can draw everything that they see around them. And it’s amazing what you see when you’re not looking for specific standards of success. Maybe they can pick up on when you’re sad (probably – I can pick up on vibes like that, and so do a lot of other types that I’ve talked to), and so instead of providing you with love like a “normal” child, they instead will hide, because they can tell that you want to be alone. Or else they cry too, because you hurt and therefore they hurt. But people don’t pick up on stuff like that, because they are too caught up in what their child should be doing. “My child should be giving me a hug and telling me they love me instead of sitting in the corner wailing like a 2 year old.” But as I said, it’s sincerely possible that they cry because you hurt and they can feel it.

They think that those on the autism spectrum don’t have empathy, but it’s not true. We don’t always know why something is happening, but we are still aware of certain facets of every situation.

As for me, when I’m not thinking socially minded, my instinct is to do something practical, because telling you it will all be all right is a lie and besides, that won’t change anything. But I will make you a cup of tea or get you a glass of water, and respect your privacy and leave you alone. This is because as people, we think about things as we see them. I remember when I’ve been upset and how I prefer to be alone then, so I will leave you alone. But in the socially standardized world, you are supposed to be around other people for all of your major emotional upsets — so my leaving you alone is actually an odd thing and it means that I don’t care.

Soon you’ll pick up on a theme I have on my blog. I’m constantly quoting one of my main profs – Dr. Nancy Hadsell. You should do a google search on her sometime. Here’s an old profile page on her that’s not in existence anywhere other than through google. It’s about 5 years old or so. It’d be longer now. Anyways, this lady knows, you know?

She said: Empathy is not defined as feeling the same as another (as she pointed out, that’s codependency), but rather the ability to hear what another is saying and to tell them that you heard.

I have that quote listed on my autism quotes page.

I feel that I have probably rambled a bit and have not been as clear on some points as I would have liked to have been.

Therefore, I shall leave you with two more quotes; one is specifically about autism and the other is one that I think of whenever I read the first one.

  • Jim Sinclair says this in “Don’t Mourn For Us:”

This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

  • BTW, this one by Jim Sinclair reminds me of the line from the movie Batman Begins, where Ducard says this to Bruce Wayne:

But I know the rage that drives you. That impossible anger strangling the grief, until the memory of your loved one is just… poison in your veins. And one day, you catch yourself wishing the person you loved had never existed so you’d be spared your pain.

Advertisements

~ by lastcrazyhorn on July 1, 2008.

11 Responses to “The Truth of the Situation”

  1. What a powerful statement- I don’t think that you were unclear at all. Thanks.

  2. Those two quotes pack a remarkable punch, my friend. Food for thought.

  3. This is really good Lastcrazyhorn. Your points were very clear to me.

    My parents were told that I would be both physically and cognitively disabled when I was born so not being whole or complete has always been a part of how I’ve been seen by many people.

    What you said about the way a child can feel makes a lot of sense to me.

    I liked what you said here: “Or else they cry too, because you hurt and therefore they hurt.”

    Sometimes what I want to tell parents about that is that what they are crying about and then in turn has the child crying, would probably not otherwise be a part of a child’s reality. Their skillful achievements as it relates to how well other children are doing in those areas doesn’t mean that much to a child beyond that (for some reason they don’t understand) others are unhappy when they don’t perform at a certain level.

    Sometimes people never “grow up” (so to speak) understanding why those standards are ever that important. Maybe other things consume our interest. Maybe later in life we then choose not to reach so high to meet others standards. Does this mean that how we function is substandard? Are we really less mature? Maybe, but maybe not.

  4. Super post!

  5. Imagine if they were parents of a physically disabled child who could not walk. Imagine if they were to say, “My child is worthless because he cannot walk. It is someone else’s fault. Therefore, we’ll put our faith in something that is unproven and let doctors pump our child full of chemicals so as to make them better — and then they will walk and we will be happy.”

    Unfortunately, this sort of thing (if not chemicals, then surgery or, often painful and coercive, physiotherapy) actually does happen to kids with physical disabilities, just as much as it does to autistic kids – Norm Kunc’s article “The Stairs Don’t Go Anywhere” describes one example, the tendon surgery given “automatically” to many kids with CP (which, for at least one person i know, left her with more impaired mobility than previously) is another, i’ve seen others… one documentary i saw about parents bringing up disabled kids had a mother screaming at her 2yr old daughter for not walking after foot surgery, using “[daughter’s name, which i don’t remember] will end up in a wheelchair” as if it was a threat, rather than probably the best mobility option for her…

    Does that mean that an severely low-functioning autistic child will go out and become married and produce grandchildren just because you believe in them? Unlikely. That’s the truth of reality.

    That made me think of the difference (which it can be really difficult to explain) between the truth of someone’s theoretical capabilities (in an ideal social world), and the unpleasant realities of living in a disablist world in which lots of people’s true capabilities will never be realised because of how many (architectural, administrative or attitudinal) barriers there are in front of them. 😦 But then, it can also kind of go the other way – parents getting upset or disappointed that their son/daughter will never give them grandchildren, not because there are barriers to them forming relationships, but because they don’t want to have children (as i don’t – as i’m approaching the age my parents were when they had me, i’ll probably run up against that one soon)…

    The key, IMO, is accepting people as they are, but also understanding that society doesn’t allow people to be all of who they are, and that needs fighting, too…

  6. Thank you, I’m so glad you posted this. People need to hear it.

  7. Very clear, and very awesome, post! It is always somewhere in the back of my brain “how will Patrick percieve it if I say this, or if I do that”. I met a mom the other day who talks about her autistic child as if he wasn’t there, but when she gets to the word autism, she whispers it like it’s a dirty word. I’m starting to feel very sorry for her child.

  8. mumkeepingsane – I would too. 😦

    Shiva – That’s why I was kind of hesitant on posting to begin with, because people don’t read closely enough, or they don’t see the fine lines between the situation. I half expected to come in here today and find someone cussing me out for writing this.

    And your example just proves that there are far too many crazy people out there who are allowed to care for children.

    You know, if the whole world were disabled in some way, we’d all live equally able . . . just a theory. Then again, I think we all are disabled in some way, only many are in denial.

  9. Great post. As a parent of an autistic child, I know I have my moments when I wish we didn’t have to deal with all the curve balls that autism throws at us. And there are many. But that does not mean I wish my child to be anything other than who she is because I have a profound love for my little girl. It might be an even even greater love because she is not what some would call normal. Personally, I think normal is just a nice word for boring or mediocre.
    Yes, I want her to enjoy life to the fullest, and I want her to be safe and secure, so we work hard to give her the tools she’ll need to deal with all the normals and the ignorance out there. But I also see the magic in her, and I know that her autism is part of that magic. Her astounding memory, her soul-searching stare, her perfect pitch, her hyperlexia and her Mona Lisa smile. It’s not always easy to handle, but I would not want it any other way. Thanks for the thought provoking post.

  10. WOW! Times a million. One thing I have always told my children, ‘NO MATTER WHAT I WILL ALWAYS LOVE YOU’. I wanted my AS son to know that we were there for him no matter what. We say the same to our NT DD, as the world is a very cruel place. When he was about 3 he would have these meltdowns and I was so lost that I would just sit and cry and he would stop midstream and come and sit in my lap. To this day if I was to yelp, like I stub my toe or something he is the first one there. And now he is 14 and going to High School next year. He is already looking forward to driving. Me not so much. lol.

  11. Love this post! Nicely done.

    Thanks.

    Joe

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

 
%d bloggers like this: