PS - The abreviation "NT" means neurotypical -- Aspie lingo for non-autistic types)
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An Aspie's Advice to Parents of Aspie Kids
Note: This article was written when this web site was entitled "Aspie Advocacy." When I realized that I am more properly HFA (high-functioning autistic) than aspie, despite my many similarities to aspies, I decided that a bifurcated view of AS and autism did not make sense. Thus, I changed the name of the site, as well as the editorial "slant," to reflect the unified nature of the spectrum as a whole. That is why I recently changed the title in the link to this article. However, for the moment, I am leaving the article as it was written originally. Keep in mind that when I say "aspie" in this article, I refer to all people on the higher-functioning end of the spectrum, regardless of which diagnosis they may have.
Before I begin, let me give you a little bit of background so you know exactly what my "qualifications" are (and are not). My name is Frank, and I am a thirty-year old aspie male. I do not have kids, and at this time I do not plan to have any. Despite my non-parent status, though, I think I have some insight to offer to parents of AS children. In the year or so that I have known of AS, I have learned quite a bit on that topic, and I have had the privilege of communicating with many other aspies online. Some of them are living relatively normal lives, with a spouse and kids, and some are living on SSI or other forms of welfare, unable (or convinced thy are unable) to work. I fall somewhere in the middle... I am employed, but as someone that probably would qualify for Mensa, I am very much underemployed. The job I do is a relatively low-stress, low-responsibility job that I can do half-asleep, and that is the reason I am able to deal with the strain.
Like most (if not nearly all) aspies my age, I was never diagnosed as being on the autistic spectrum as a child. Until very recently, everyone thought that autistics were uncommunicative, mentally retarded lost souls that just sat and rocked all day. That's the stereotype for low-functioning autistics, which are the most common of the classic Kanner-type autistics. Certainly no one would diagnose a bright, talkative child as being autistic... and the more specific diagnosis of Asperger's Syndrome did not gain notoriety in the western world until around 1990. AS was not included in the DSM (psychiatrist's diagnostic manual) until 1994. Thus, aspies like me grew up with no special consideration at all, and with no AS-related treatment or counseling.
I always knew I was different, since about the third grade. Starting in the seventh grade, I began to be the target for more adolescent abuse than most people would ever care to imagine. I never knew why I was always singled-out as a target... I really tried to be nice to everyone, and it just did not work. That ostracism tore apart my self-esteem, and by the time I graduated from high school, I had adopted the idea that I was a worthless piece of refuse. Those years are such a bad time to have this sort of thing happen... it is right at that time when kids are trying to fit in and find their place in the group. Well, it is not surprising that I suffered through the better part of a decade in a deep depression. Although I still struggle with issues of self-confidence and motivation (I still have no ambition at all), the depression is finally under control (at least as far as the dysphoria is concerned) due to the wonders of modern pharmaceuticals. It is this experience that has allowed me to see something that is really quite obvious, but somehow rarely mentioned: Depression is THE primary disability for aspies.
There are a lot of aspies that say they cannot work, and I don't doubt that to be true. Every single one of them I have spoken to (well, typed to) has also been very depressed. Depression is a very real, very powerful disability that can and does make it impossible for so-affected individuals to function in any meaningful manner. It's too easy to blame the AS itself and to overlook the role of the depression in making daily life impossible. The AS causes ostracism, which causes a loss of self-esteem, which causes depression, which causes disability. Cut off the depression and the disability goes away too. It's hard, but it has to be done. And if my own experience is any indication, the recovering depressive will find that he is more resistant to the kind of abuse that caused the depression in the first place. You really do come out of it stronger. Even so, it is an uphill struggle, and the after-effects can last a long time... maybe a lifetime. It's a much better idea to prevent it in the first place.
Now I am not going to try to tell anyone that it will be easy for a non-depressed aspie in the work world. It won't be. Every office has the whole office-politics thing, and aspies by nature do not play that game. We always end up being the losers in social-positioning games. Further, we don't relate to others the way that we are expected. There's such a big emphasis on the "team player" stuff, and we can never measure up to NTs in that regard. I will admit that it is harder for us, and that there are less options. We will, by and large, be at low levels for the duration of employment at any given site. This is NOT because we are disabled, impaired, or in any way incapable. It's because it is an NT world, and they make the rules to suit themselves, and almost no one is going to give us a break because we are different. On the other hand, we are natural innovators, and we make great entrepreneurs. We have to be realistic in our expectations of what we will and will not be able to do.
Now, let me dig into the causes of depression for aspies. Well, obviously, anything that causes a normal kid to become depressed can do the same to an aspie kid. That does not explain, though, the near 100% incidence of depression in aspies. In a nutshell, aspies are depressed because they believe that they are defective people... unwanted misfits that people wish would go away. This certainly was the case for me! There are only so many times you can be told that you are worthless garbage before you begin to believe it. After all, could all of those people be wrong? (Answer: YES!)
From what I understand, my own experience is absolutely typical of aspie boys in regular schools. It starts in the seventh grade, because that is the first year that the structure and control of the "one teacher all day" class environment is dumped in favor of the "change classes every 45 minutes" pattern of middle/jr. high and high school. There are literally hundreds of opportunities for mean kids to attack their classmates in a single school day, and they get away with it 99% of the time. I wish I could suggest an easy way to end the abuse, but I don't know that there is one. The school officials will NOT want to help you... oh, sure, they'll give lip service... "We don't tolerate abuse at all..." but when the rubber hits the road, it is all talk. Encouraging your unpopular child to report abuse to school authorities is a bad idea, because the bullies just hate the "rat" that much more, and the abuse gets worse. Trust me; I've been there.
The only thing I can offer is to teach the kid to defend himself, and to ignore the rules against self-defense. In my school, the bully and the victim were both punished equally if the victim tried to defend himself. I knew this, and I followed the rules. I just stood there and took my beatings as the school officials pretended they did not notice ("Boys will be boys," they say... "They have to learn to settle their own differences." That's what they are thinking as they stand there and let bullies ruin your aspie kid's life.) I am truly sorry that I have nothing better to offer than that, but a mainstream school is just going to remain a hostile environment for autistic kids of any flavor. It's worse if your child is small or uncoordinated, which make effective self-defense harder, if not impossible. Home-schooling is a good idea, if you're up to the challenge.
Bullies are not the only source of depression for aspies. Unfortunately, the other is much more insidious, and the damage may be more pervasive. It's the psychiatrist that you think is helping your kid! Most of the psychiatric industry operates from an assumption that normal is good and everything else is bad, and that everything else should be eliminated. They use words like "dysfunction" and "impairment" to talk about your child's aspie traits. Rarely do they focus on the good points... and there are a lot of reasons to be happy you have AS. You would never know that from the way that most shrinks talk, though. I am not saying that all of them are bad, but you have to be aware that the likelihood is high that the doctor can make things worse as he tries to help.
AS and other forms of autism cannot be cured, and even if they could, the person being "fixed" would be gone. There is no normal person inside the aspie, waiting to be set free. The aspie characteristics go all the way to the core. It can't be stripped away. What good does it do to have a doctor make your child hate his autistic condition when there is nothing that can be done about it? This certainly is not the intent of the medical community, but it happens anyway, and with alarming frequency. When a person hates the fact that he is autistic, he hates what he is and who he is. That's not a recipe for a good life! There is so much that is good about AS, but so many people just refuse to see that. If your child's therapist or psychiatrist is one of them, find another.
There are some treatments designed to help aspie kids fit in, and I do not hold a high opinion of them. They basically teach the kids to suppress their natural selves, and to act like the NT that everyone wishes that they were. I've talked to a number of aspies that live behind such a facade, and they tell me that it is very stressful and demeaning. Nothing like having to hide who you really are all day, every day, right? Anyone want to guess whether these kids start to think that their natural autistic state is bad and shameful? These are not going to be happy kids. They'll be self-conscious, living behind a lie, afraid to show who they really are. It's a bad deal.
Now do not get me wrong... I am not against teaching aspies and auties some simple "tools" to deal with living in an NT world, but it MUST be made clear that these are just tools to deal with having to live in a hostile world in which aspies are seriously outnumbered, and NEVER should the child be allowed to get the idea that being himself is bad, shameful, or unacceptable. We (aspies) are different, NOT bad, NOT inferior, NOT broken. That message has to be repeated... make sure it gets through. Treat AS as a gift, not a disability. If you don't know what the good points of AS are, please have a look at some of my other articles. If your child is seeing a psychiatrist, be sure that the doctor only intends to help the child deal with living in a world that is not his own, and not to try to "fix" the child in any way. Being a "fish out of water" is hard enough! Please humor me even if you yourself wish your child could be "fixed" and made normal... it is not going to happen, and if you try, you will make things worse. People can and do live happily with AS, but no one lives happily with a sense of self-loathing.
That brings me to some suggestions as to what you should, and should not, do. Don't try to suppress your child's autistic behavior... things like like pacing, flapping hands, rocking, obsessing on one thing, et cetera. In a calm, rational, logical manner, you can explain why the child should curb such behaviors when in public places, but don't punish the child if he slips and does something embarrassing. He really is not trying to embarrass you! He is far too wrapped up in his own needs to even consider that you have feelings too. Do allow your child to have "alone" time each day, if he so desires, and do allow him to stim when he needs to. These are natural, real needs for autistic people, and stifling them will make your child seek more extreme ways to release stress.
Aspie kids, by the way, respond best if you tell them exactly why they must, or must not, do certain things. Be specific with your reasons, and make them as concrete as possible. The perennial favorite "Why? Because I said so" is not likely to work. That may work on NT kids (although not always that well) that understand social hierarchies, but aspie kids are more logical, and do not respond as well to pure domination. Yelling is even less likely to work... it is likely to put the kid in overload, or even cause a meltdown. Calm and rational is the order of the day. Very often, you will find that your child's "rebellious" or "bad" behavior is not motivated by any sort of malice at all! It might just be the autistic child's natural way. Remember, your ways are just as bizarre and unusual to him as his are to you... but he does not have the benefit of your years of life experience.
In short, and I repeat this point to emphasize its importance, you really need to be careful that the aspie kid is never given the impression that there is anything wrong with having AS. Not from his peers, not from his doctors, not from you or other relatives. Jealously guard the notion that AS is a good thing, and that most people just do not understand. If the child can grow up with self-image intact, he will be much better able to deal with the stresses of real life. Yes, it is true, the kid does need to learn how to deal with the world at some point, but that time is not until the mid-20s at the earliest, IMO, for an aspie. No 18-year old is really mature enough to deal with life, but an aspie does not usually reach a similar level of maturity until about 25.
I cannot overstress how easy it is for an aspie kid to lose self-esteem and get depressed. It is much easier for aspies to get depressed than NTs, and look how many depressed NT kids there are. That depression is the cause of most of the inability to deal with life that so many aspies display. And it sure makes more sense to prevent the depression than to try to cure it later! It's a very real concern, and it is almost universal among aspies.
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发表于 2003-11-22 06:48:39
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