Congratulations, Your Child Is Strange

Buku tentang autisme ini ditulis oleh seorang dengan Asperger’s Syndrome. Membacanya sangat menarik sekali untuk saya, karena disini penulisnya menjelaskan autisme dari sisi orang yang autistik, bukan dari psikolog, ahli tumbuh kembang atau lainnya. Saya kutip sebagian Introductionnya disini. Untuk lengkapnya dapat di baca di link ini Congratulations! Your Child Is Strange.

To make a very long story short, I am not normal.  I was not born normal, I did not develop normally, and barring some act of God, I will probably remain weird for the rest of my life.  I started talking late.  I didn’t act like a normal child.  I rocked back and forth, I avoided other people, and so forth.  When I was 3, my parents took me to the doctors concerned that there was something going on.  The doctors did a physical examination and determined that there was nothing horribly wrong with me physically other than being skinny and short.  I was just developing slower than most children.  They told my parents that there was nothing they could do, and they should just wait for me to catch up.  I suppose in retrospect, that was the closest diagnosis I could get to autism (commonly referred to as a developmental delay) at the time.  The simple truth is that if I was born today I would be labeled as autistic before I reached 2 years old.

I never received any special medical label, and lived my life wondering why I was so strange.  Believe me when I tell you that it wasn’t hard to notice that I didn’t fit in with the other people around me.   It wasn’t hard to notice that some things which came easy to normal people were always very difficult for me, and vice versa.  It wasn’t hard to notice that no matter how hard I tried I could never fit in, nor live up to people’s expectations.  I was always assumed to just be obstinate, lazy, crazy, or any one of a dozen other derogatory terms, applied by those around me.  I was always the strange kid in school, and as such was treated very poorly by the majority of my peers.  My home life wasn’t all too great either.  My mother made it an important part of her parenting technique to punish me for anything and everything that she considered to be a problem, regardless if I could to anything about it.  I can honestly tell you that my childhood was a thoroughly unpleasant time.

Eventually I grew older, graduated from high school, and went to college.  I learned to avoid the people who made me miserable, and just spend my time alone on the computer.  To be honest, I think this is what saved my sanity.  Over the years I figured out for myself what did and didn’t work.  I figured out how to deal with my short comings, and how to take advantage of my strengths.  I figured out the most effective ways to deal with people, and how to keep myself from being a nervous wreck.  I basically figured out how to make the most out of my life given what information I had available.

When I was 21 years old and in my senior year of college, I watched a show about Isaac Newton on Nova.  After recognizing some similarities between me and him I decided to look him up on Wikipedia and find out more.  A few clicks later, after reading about his unique (and oddly familiar) personality, I wound up on the Wikipedia page for Asperger’s Syndrome.  As I read the page it was a somewhat surreal experience to say the least.  It was like somebody had followed me around all my life and decided to condense my life story down into a single article.  To say I was dumbstruck would be an understatement.  I don’t think I can describe in words what it is like to finally know why I was so different.  The best I could possibly convey is that it is an amazing sense of relief, and understanding to know that I am not just some random freak who isn’t right in the head.  At the same time it answered so many questions, explained so many things, and put my entire life into a perspective that for the first time actually made sense.  It was probably the most important discovery of my life.

Since that discovery, I finished college with my degree in mechanical engineering.  I then got a job, moved out, and now live independently.  I can’t say my life is 100% perfect, I still have some problems.  But my life today is better than it ever was when I was younger.  I have learned so much about myself, who I am, and how to make the best of it.  Today I am happy and content with my situation.  And while I cannot say that I have all the answers to all problems, I do know that I have found my own answers which have allowed me to get to where I am.

In my quest to learn more, I have picked up every single book I could find about Asperger’s syndrome or autism.  I have read books written by doctors, parents, and other autistic people.  I have also read thousands of articles about the condition, everything from medical information to parenting techniques for autistic children.  Perhaps most importantly, I found an online message board where people like me could log on and talk to one another.  Simply being able to have a conversation, and get to know other people like me, was a very rewarding experience.  All my life, I have never been able to really understand normal people.  But when I logged on to the website I found out that while in there, I was normal.  For those who are interested, the forum is called WrongPlanet.  You can link to it here:  http://www.wrongplanet.net/forums.html

This forum also has a section where parents of autistic children can come and post their questions, ideas, and anything else they would like to say.  While I was browsing the forum I happened to see some mother post a question about why her son was acting so strangely.  Since I act the same way, and know why I do so, I was able to explain it to her from her son’s perspective.  She thanked me and it helped both her and her son.  Since it felt nice to help her out I decided to visit the parenting section more often and give out advice when I thought I had something useful to contribute.  Also, I would be lying if I said that giving advice didn’t help me personally.  In a way, helping out these parents and children is the best therapy I could get for dealing with my own childhood.  Over time I wound up giving a couple thousand pages worth of advice, and several of the parents suggested that I should write a book.

At first I didn’t really like the idea of writing a book.  My problem is simply a matter of trying to provide adequate information.  How can I possibly provide relevant advice with a book where I know nothing about the reader?  But, as fortune would have it, I recently lost my job since my company didn’t have enough work to go around.  So, that left me with a large amount of free time on my hands and I needed something to do.  As I thought about writing a book, I realized that while I cannot answer every question, I may be able to help clarify some common misconceptions and help parents to better understand their children.  The worst case scenario would be that I accomplish something productive with my time instead of waiting on my fruitless job search to turn up anything.

The second (and perhaps the more important) reason I am writing this is very simple.  I want to make it very clear that just because your child is strange doesn’t mean they have to suffer and live a hopeless and unfulfilling life.  Your child can learn to be happy with their lives.  Despite what the over emotional and ratings driven media tells you, having autism is not some horrible life stealing, soul crushing disease.  But as I look back on my life I can come to one very simple conclusion.  The reason I was so miserable and depressed as a child had nothing to do with the fact that I was autistic.  It was caused by the way other people treated me.  If people had just taken the time to help me out and work with me instead of punishing me for being different I wouldn’t have been so depressed.  So that is why I am writing this book.  I just want to make sure that no child has to go through what I went through as a child.  I am not saying that this book will solve all your problems and make everything wonderful.  But at least it may help you understand things a bit better.

So, I think that explains why I am writing this book, the next item on the list is what this book is about.  This book, if I had to summarize it as much as possible, is simply explaining what autism really is, and what that means for raising an autistic child from an autistic person’s perspective.  I have read several books written by psychologists and parents about how to deal with an autistic child.  These books may be written with the best of intentions, and they often have good advice.  But the problem I have is that they are not always correct at explaining what is really going on.  The authors don’t know what it is like to be autistic, and the things they write reflect that.

I can’t blame them for not understanding; it’s not possible for them to know.  For the sake of comparison, it would be like a male writing a book about what pregnancy.  The male may do a lot of research and try to get as much information as possible; but he would never get the full picture about what it feels like to be pregnant.  So, with this book I am going to try and explain things from the perspective of somebody who has been there, done that, and figured out the hard way what works and what doesn’t.

As for other important information you probably need to know, there are a few things worth mentioning.  For starters, I would consider myself to be a Christian, but perhaps not in the strictest sense.  I don’t believe in taking parables and metaphors and interpreting them literally despite all evidence to the contrary.  I also don’t think we should take cultural obligations from a 4000 year old tribe and apply them unquestioningly.  But despite those disagreements, I still believe in the intent of the religion.  Specifically, I believe that within every human being there is a base human nature which causes us to be less than perfect.  We all want to lie, cheat, steal, abuse the system, take advantage of people, shirk our responsibilities, and put our own desires above those of others.  Nobody wants to be patient, or develop perseverance.  We all want to get what we want, when we want it.  This is not something that you need to teach to your child, nor anything you can remove from them.  It isn’t due to autism, and it isn’t a sign that you’re a bad parent, or that they are a bad child.  It is merely a sign that they are human.

But despite our self centered nature, it is important that we develop our virtues and learn to overcome our harmful natural instincts.  This is not just for autistic people, or children, it is for everybody, parents included.  It isn’t something that you just achieve one day.  It is a lifelong process to develop the virtues of patience, kindness, self control, and respect for your fellow man.  It requires that you put forth a continual effort each and every day in order to grow.  I also believe in the importance of forgiving others when they fail to control their base instincts.  It is everybody’s responsibility to help those who are struggling.  And we should help them, not by punishing them and making them suffer for the faults they are born with, but by working cooperatively with them in order to help them overcome their difficulties.

My advice is all based on this premise, and you will clearly see these ideas over the course of the book.  If you disagree with me then that is fine.  I can’t force you to believe what I do, and the point of this book isn’t to convert anybody.  But just be aware that if you dislike the ideas of developing virtues, and treating others with respect and compassion, then you should stop reading now.  I will readily admit that I am a hypocrite.  I can speak all I want about patience and forgiveness, yet I myself still get impatient and have trouble forgiving those who have wronged me.  But perfection is not what is important; what is important is that you try despite the struggles, and help others around you when they struggle too.

I should also point out that I am not the only person who grew up weird without receiving a label for it.  While Temple Grandin is a nice person, she is not the only adult who is autistic.  There are hundreds of thousands of adults who grew up never receiving any label other then weird.  Prior to the mid 1990’s the only diagnoses handed out were for people with severe and obvious disabilities.  If you talked before age 5, or showed any sign of intelligence you were basically disqualified from getting a diagnosis of autism.  There, of course, was also the social stigma attached to having your child diagnosed with autism.  That meant even obvious cases often went without a diagnosis because the only thing a diagnosis provided was blame for the parents, stigma for the child, and no services whatsoever.  Autism in previous generations was much more prevalent then the recorded 1 in 10,000; it’s just that most autistic people never got diagnosed.   So don’t think that I am a rare and unusual person who is uniquely able to write this book.  I just happen to be the one with a lot of free time because I am unemployed.  If you want to get the perspective of other autistic adults then I encourage you to go visit the Wrong Planet forums and talk with the rest of them.

And lastly, the final important thing I need to mention before this book gets started is that I am not (nor have I ever been) infallible.  The advice here is written with the best of intentions, but it will not be 100% correct and helpful in every single situation that ever exists.  This advice is all written based on my perspective, and as such may not hold true for somebody who doesn’t operate the same way I do.  I am a male, so some of the advice in here may not work for women.  Some people will struggle in areas that I do not, and as such my advice may not be useful in that area.  Yet others may be able to do things and handle things that I cannot.  So, I encourage you to read the chapters and think about it for yourself to see whether or not the advice is applicable to your situation.  If you have a serious question, and you would like input from more than one person (always a wise idea) then it is probably a good idea to consult with other people such as the other parents or autistic people on Wrong Planet or any other of a dozen websites.  You could also look for local support groups in your area, or read other books.  While I am happy that you are taking the time to read my advice, asking more than one person is never a bad thing.

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