Thursday, 15. March 2007, 18:20:29
[Note: This is a first draft. I'll be updating it as I gain more information because I want to make sure I get this right.]I don't really like to talk about this subject because there's a lot of bad information out there and besides, any conversation about it usually degrades into lies. Having been close to it, I'm going to explain what it is from my point of view. It's an important subject, especially for those in the computing field. Programming takes a certain amount of focus and determination. This is one of the qualities of having autism.
And that brings me to the main point that you almost never see on sites about autism. What is autism from the perspective of someone who is autistic? The first thing to realise is that someone with autism isn't in pain. He isn't unhappy with himself. He doesn't wish he were someone else. There's nothing about his mental states that tell him he's inferior. So there's obviously something very out of whack with the public notion of autism and what is being published in the media and what is actually going on.
First, there are two versions of autism. There's the version that people see. And there's the version that an autistic person sees. They are worlds apart.
Let's start with the usual attributes of autism. There are a lot of them. Not every autistic person has these. Non-autistic people have some of these. Some are more affected than others. Some autistics can get these under control. Some can't.
1. Discomfort in making eye contact.
2. Discomfort in hearing sounds and sometimes specific kinds of sounds like voices. Other senses can also (or instead) be affected.
3. Extreme interest in a particular topic (like programming).
4. Difficulty and anxiety going into new situations, even if that situation is very simple.
5. Difficulty understanding subtle facial expressions.
6. Direct and obvious face expressions can be overwhelming.
7. Difficulty understanding body language.
8. Taking statements too literally.
9. Easily frustrated in a variety of situations where the autistic person's point of view is brushed aside. Other triggers are very much possible.
10. Prefers being alone, but it varies a lot. Autistics very much want to reach out in many cases. Just not for prolonged periods of time and perhaps not to the same intensity as others.
11. Does not lie.
12. Very strong value system.
13. Extremely loyal.
14. Because autistics hold back a lot for fear of repercussions, whenever it is no longer necessary to hold back, they can go to the other extreme and let completely loose. Sometimes obsessive behaviour is seen because it becomes too difficult to reach a middle ground since the autistic person has no idea where this middle ground is.
15. Speech may be impaired or non-existent. (This can be voluntary, but usually comes about by some kind of negative external stimuli.)
16. Meltdowns. This is when they need a break and they're not given the chance to take one.
17. Stims. Usually some kind of rocking motion or hand flapping. It takes their minds off any topic or situation and they can concentrate on the motion or whatever else. It's a calming behaviour. If they're not allowed to do this, a meltdown can ensue.
18. Does not like the accepted communication style of useless or obvious information like asking how you are or if you think it's a nice day out. They have no reason to want to know your feelings and if you have eyes, you can figure out on your own if it's a nice day. So there's no point in discussing it.
19. Are very logical. Logic is used for everything and thus takes up most of their mental processes. Rarely does anyone, autistic or not, have all the information necessary, so on occasions this leads to incorrect assumptions and is very awkward for the autistic person. If their logic fails, they have no backup.
20. Can be unaware of dangers or repercussions of situations. (Could be because they assume the area they are in should be safe or put their trust in the people around them.)
21. Their facial expressions are not always linked to their internal moods. This is why you are most likely wrong if you think an autistic person is unhappy if you see what you believe to be a sad face.
There's probably more, but that should give you an idea. Everyone has some of these. Autistics have more of them. People who have many of the above, yet can function in society are usually diagnosed as having AS or Asperger's Syndrome. This can happen even if you don't have autism. This will have drastic consequences.
There are many things to take note here. First, not all the items above are negative. More than that, some of the positives actually end up being negatives in the real world. They are too trusting. So sometimes they can be tricked rather easily. Lying in the real world is a must. From an autistic person's point of view, it is impossible to have the simplest of conversations without lying. Even if the conversation is honest, you can end up with something like this:
Q1: "Nice day out, eh?"
A1: "Are you saying I can't tell? That I'm stupid? That maybe I wouldn't be able to figure this out on my own if you hadn't pointed it out?"
They may not actually say this. But I'm sure it crosses their minds. The reason is that it's wasteful. There's no point to it. Autistics have a hard enough time with actual needs and want for persanal time that maybe this doesn't rank too high on their list of topics. I don't know for sure. But there's nothing they can do about the weather. This happens in a lot of situations that seem to baffle parents and non-autistics. For example, if an autistic child and mother are outside somewhere and the mother falls, it's quite possible the child will say nothing, seemingly uncaring. But an autistic child is probably thinking that asking if her mother is all right is an insult because it's quite obvious. The autistic child may think that it'd be rubbing it in. It depends on past experience. Also, if the mother wants the child to do something to help, it's highly likely that the mother will tell the child what to do. The autistic child knows this. So not knowing what to say, an autistic could likely stand there with no facial expression and not say a word. But they are not uncaring. They will think about all these things. In their view, not saying anything is usually the best way to not to get in trouble.
And that's something that I think most people don't get. Most everything that an autistic child does is wrong in popular culture. They are demonized. So if an autistic child gets a whiff of this and doesn't see an out, then watch out. He may as well act it out if there's no other option. The public view however, tends to focus on the outbursts. Look at this Jerry Springer style
description. Scary, huh? I can tell you that this is not the norm. This is either a VERY extreme case, or there's something we're not being told.
Note that in the list, I haven't mentioned that autistics have communication problems unlike official diagnosis. Why? Because it's not specific enough. There's pronunciation aptitude and there's ability to converse. So if you're talking about pronunciation. This does happen on occasion. It can often be completely resolved with assistance. Just remember that if a child pronounced certain words incorrectly for an extended period of time, he will not know that he's not pronouncing it correctly afterwards no matter how much you try and get him to pronounce it a different way. Make sure you tell him that he's not pronouncing it like everyone else. He will likely not believe you, so it may take some convincing. Maybe telling him that just for now, pronounce it like you do. Give him a reason to do this. Reward him, or just tell him it's a favour. Whatever. Splitting up syllables and them recombining them also helps. So there's a whole gamut of scenarios that we don't hear about in the media. I'm not sure what kind of information parents get either.
Now we get to conversation. Conversation to an autistic happens at a different level. They do not wish to converse like others do. Here's what I mean. Let's say two people (your non-autistic friends maybe) are talking to each other and they don't understand each other on a particular topic. Who is guilty for the communication problem? Take any situation. If two people who talk different languages don't understand each other, who's fault is it? Because there are more non-autistics, the conversation style that is the norm is that one. Autistics must adapt if they are to interact in the real world. So they must understand the nuances, reading between the lines and all that stuff where they have difficulty. They must also try and understand the speaker's frame of mind in order to predict and understand the context of the conversation. So what you hear about autistics, especially those with severe autism, that they cannot understand another person's frame of mind is completely false. In fact, they spend a great amount of time dealing with this.
Here, it gets tricky though. What does the word 'understand' mean? It can mean several things. I can understand why a black person doesn't like the N word. But I can never understand what it is to be in their shoes. So this term 'understand' deserves more explanation. An autistic person can understand how someone else might react or what they might like or what their situation is and why. But they likely would not understand what it's like to be in their shoes because no one really can. And they certainly don't feel obligated to visibly react to any given situation either. Plus, autistics are at a disadvantage because they will likely think differently than the rest of the population. So there is less to base a common frame of reference. So yeah, you can say there's a problem with communication, but is the fact that someone thinks differently reason enough to say this? This is how an autistic person sees this. They see it as unfair that one view is held as the standard just because it's the majority. It's always up to the autistic person to adapt. Sometimes, it'd be nice if parents and others tried to see it from the autistic's point of view once in a while. I think anyone who tries this would be amazed at the results.
Autistics use logic for most of what they do. It should now be obvious why many of them gravitate towards technical fields. Combined with an autistic's ability for prolonged focus on one subject, this can make for enhanced abilities. There are many
articles that talk about this in Silicon Valley. Autism is something that will only become more important in this field and should be discussed with a little more truth in it.
When we turn to look in the news, many sites like Autism Speak and Cure Autism Now are seen on par with the holocaust to many people with autism. I am not linking these sites because I personally agree with this view. I believe it's one thing to help with an autistic's ability to function, but it's another to exterminate them. Besides, I see autistic tendencies in over 70% of the population. This is a personal view. But look at the list at the top of this blog entry. Do you have one? Two? Three? Five of these? Many of these, if taken individually, aren't bad. Some are really good attributes. And they are found in ALL the population. So what will it take to cure autism? Extermination of our entire race, autistics and non-autistics alike? So it's more that I believe that autism is a product of humanity than anything else.
What a lot of people don't understand, especially so-called experts, is that autism isn't the above list of attributes. Those are quantifiable properties. But get rid of all these things, and a person will still be autistic. It's just likely that he'd be a really good actor. He's understood what behaviour non-autistics expect and will start to act that way. Eventually, it can become natural. But the person is and always will be autistic. Autism is pervasive. It's who that person is. It cannot be removed or cured from an existing person. I don't believe that experts understand this. Actually, I don't think experts understand anything about autism from what I've read online.
I want to switch gears and reiterate a story I've told many times. I forget if I've spoken about it on this blog, but here it is anyhow. When I was younger, we'd often find ourselves in groups to talk. This could be at school, at work or at the mall. If we were all French speaking, we'd speak French. If just one person showed up who spoke English, but didn't understand French, we'd all switch languages. What happened is that we weren't the only ones doing this. Most French speaking people would switch to English if someone couldn't understand French. Later, more and more, we started to hear that French was unnecessary. That many who only spoke English said they've never been in a situation where they needed French. When this became a pervasive view, most everyone I knew who speaks French stopped switching languages. We were hurting ourselves by switching. It was quite a situation telling good friends to learn French if they want to take part. We made sure that they only needed to try and we'd help them out. Some were very upset. Many wanted a reason why we wouldn't switch since we could all speak English. We always said we can't ask everyone to switch just for one or two people. It shows a lack of respect. If you join a group, you are initially a guest. When in Rome, do as the Romans do. Personally, I still don't do enough to promote my language. I hope I can do more in the future.
The point of this is that if you do everything for other people, they won't see the need to do it themselves. When you believe someone needs help, if you do everything, it may backfire on you. They may expect that you'll always do everything for them. Every situation is different, but if you're always speaking for your autistic child or you let them get away with pointing and not speaking, then you're promoting this behaviour. Like I said, every situation is different. I do know that some autistic children find speaking repulsive rather than not being able to do it. I also know that sometimes speech only becomes possible later on. So it varies a lot. All I'm trying to say is that if you've found yourself doing things for an autistic child for years, you may want to check if this couldn't change. Sometimes, certain skills are latent and only become available later. Sometimes, they're available right away. An autistic child's behaviour is very much a product of the people around him. Not for everything. But it's something to keep in mind. Please don't consider this as blaming anyone. Like my story said, sometimes we just don't realise what is actually going on and opportunities can slip by unnoticed.
Something I notice that parents are very concerned with is when a child doesn't respond when you call their name. Parents must understand that a name contains no question to be answered. There is nothing there for the child to respond. An autistic child also feels no need to answer a question. He's perfectly comfortable leaving it dangle. This is often done when an autistic person feels the question has already been answered or when it's something that is felt is obvious or unnecessary. Calling a child's name is probably one of the most devoid and annoying things for an autistic person. I can't be sure about this, but I'd be interested in knowing if there'd be some (I repeat SOME) different responses if you asked a question or worded it in a way to entice the child to respond instead of just calling his name. Give them a reason why they should answer. And by 'reason', I mean a reason for the child. Not a reason for you. Give them a benefit for answering even if it's just a bargain such as asking them to respond in exchange for things you've done in the past (or that minute) for them that they like. Sometimes just explaining why you want them to answer works wonders. This can work for everything. Explain to them why you like certain things like hugs. If you don't tell them, there's no way they can know.
One of the worst things you can probably do to an autistic person is ask them why they are down, why they're quiet or why they're not trying. First, they were likely super happy before you asked them why they are down. After this question, they will most certainly be very upset. Facial expression is not always correlated to their feelings. If they're really involved in what they are doing, it's likely they will forget to link their facial expressions to their feelings. Yes, it's true. This is not always automatic. It has to be manually handled in some cases. Second, they're probably quiet because they're enjoying what people have to say and is processing it to try and come up with something to say at the right time. Third, they may well be trying their hardest, or maybe not, and no one told them that what they are doing isn't up to calibre. The teacher likely only tells his parents later on or after the fact. Lots of good that does. If you want to bring down an autistic person, ask them one of those three things.
This brings me to the next item. Depression. It's very common with autistics. Depression is NOT an autistic trait, yet many of them have it. The reason they have it is because of all the negativity surrounding autism. Autism need not be negative. It can be very positive. Actually, this should be the publicly accepted view of autism. But no. We have freak show descriptions, statements that autistics are ill and that they are a burden. I've heard people ask sarcastically if we should lie about the situation. I say that we're already lying to them. The public view is a wrong one. If you want to help someone, you don't tell them they're a burden and that they're ill and defective. If you believe it, keep it to yourself. What's an autistic child supposed to do after you've repeated this a million times? He can't change who he is. He will be autistic for life and proud of it. If he's ashamed of being autistic, then something went drastically wrong somewhere.
The common view is how traumatising it is for the parents upon the news that their child has autism. Whatever you do, NEVER let your child see this or get a sense of this. EVER! You should always be proud of your child. You have to defend him (or her) at every chance. Your child should be proud to be autistic. But he should also understand the differences and the problems that will arise and what behaviour is expected and how to cope. Reasons, reasons and more reasons. Even the simple ones that you take for granted. Inside, your child should feel like he's a normal human being, but one that is different from most others. This is a much better view than telling your child he's defective and is ill. Telling your child he's ill or defective is just plain sick. You have to be pretty demented to do this. Rememeber, a child with autism will not feel bad about autism unless the people around them feel bad about it. This negative feeling about autism in a child is 100% from your and others reactions to it.
Each case is different. Each situation deserves its own assessment. Remember that an autistic person is a real person with feelings. I'd like to see more descriptions about how the autistic children (and even adults) are feeling and how different things affect their situation. Most public reactions are always about how the parents feel. I always say that the children should come first. Not that I don't empathise with the parents, but that they should not be the focus of attention for getting benefits. It should be about the child's needs. The public deionisation of autism must stop. The attempts at genocide must stop.
Many autistics, even severe cases, can end up holding jobs and functioning adequately in society. Highly intelligent and artistic people in our society have been autistic. Autistic people have a great sense of humour. They are very artistic. They have fascinating ideas. They are very creative. They are intelligent. They have a warm soul. They are our brothers and sisters. Yes, there are negative aspects to autism. No one's denying that. But looking at it from a positive perspective will do untold good. If it makes just one more autistic person happier, then it'll be worth it. I'm no expert. This is just some of what I've seen personally and I've yet to see it reported in any constructive way. I will admit I could be completely wrong. But one thing I do know is that things must change. We cannot continue to have such a negative view of autism if we are to help those that are here now. Be proud of who you are.
The voice of the autistic community comes from people who have autism. They are the ones we need to listen to.
The Real Voice of AutismThe Evil in Preventing AutismDon't Mourn for UsGetting the Truth Out (read at least to page 10)What Happens to Someone Normal With Wrong DiagnosisThis has been my humble attempt at seeing the light and listening to the autistic community. Those who are actually autistic. Those whose voices are so often drowned in lies.