Sunday, June 21, 2015

Denial & Personal Thoughts - Autism Acceptance

Speaking from personal experience, I think denial can be a very dangerous thing. 

I think it's dangerous to deny someone their specific set of skills or weaknesses, especially if that set of skills and weaknesses mean they have a brain difference like autism. 

I know, I know, people are afraid of the labels. They are afraid of the judgement from other people or kids toward their child for being different. 

Think about it for a minute though, labelled or not, they are going to be different anyway, and they are going to be teased or excluded because they are different anyway. The label would serve as a proper way to deal with other people's judgement because you can explain and educate. 

As I've said before, I think people have enough "awareness" of autism. "Autism Awareness" is a very ridiculous thing because people ARE aware. However, they do not understand or receive proper information on autism. They are given the "horror stories" and the "disabilities" and the bad side in huge measure, told by people who DO NOT have autism. They are told or hear how bad autism is, how it's a horrible disease like polio or AIDS or cancer or something (it's not). They are told how parents suffer and worry their whole lives about their autistic children, if they will ever fit in with society and what will happen to them when they are gone. It is a whole big pot of "here, fear autism" that comes with the "Autism Awareness" campaigns. 

What we need is "Autism Acceptance". With autism acceptance comes knowledge and understanding. Real people WITH autism get a chance to speak and tell people what autism means to them, what it is actually like to live with autism, how their lives still have value and meaning and purpose even though we are different from the rest of you.

Anyway, with this fear, comes a strong denial of autism all together. No one "wants" their child to have autism, because its scary, because its supposedly a negative label, because they're afraid. They're afraid it will hold their child back, they're afraid it will cause more people to be judgmental about their child, that they will judge their parenting, and they will think that the child is stupid, or won't ever be able to function in society.

So even though a child has all kinds of super clear signs of autism, you get a family who completely rejects the idea of autism because they are so afraid of the diagnosis. They don't want their kid to be different. They don't want their kid to struggle. They want something for their child that the child will never attain, whether that's popularity, or social acceptance, or whatever.

EVEN JESUS was rejected, by his own people. What is this obsession with popularity and fitting in anyway? Why do we want our kids to fit in, and be like other kids? Don't we want our kids to be who THEY are, not who their friends are or make them to be? I digress...

When you reject the possibility of your child having autism, you reject who they are, and how their brain works. You do them a disservice because you give them no proper understanding of who they REALLY are, how they are really built. You forget these brains are created this way for a purpose. Yes, its weird. Yes, it is inconvenient. So what? Are they a little monster, or your child?

Sure, you accept them for their quirks and you work with that in different ways. Some parents will protect their kid, and allow them the control and space over their issues, anxieties and fears. However, some parents do not, and end up forcing their child through these anxieties and fears, making them bigger, not giving them the confidence that they are safe until they are able to move through that issue in their own way at their level of comfort. Obviously we don't need our kids to be terrified or anxious about things all the time, but I don't think (from personal experience) that telling them their fears are stupid, and forcing them more trauma by scaring them will help them "get over it". It actually makes the fear bigger, not smaller.

I think, especially when talking about an autistic child, this does a great harm to them. They already have a hard enough time dealing with the world, and now the people who should protect them the most give them the idea that their feelings, fears and anxieties are wrong, that they are wrong, they are broken, and they are forced to endure anxieties and stresses that they just aren't yet equipped to handle. You force them into a position where they constantly have this impression that this uncontrollable thing about them is bad, so they must be bad, and many kids act bad because they feel bad. 

What everyone needs to start understanding is that most autistic adults do not want to be "cured", and cannot imagine their life any other way. We like ourselves, for the most part. Again though, if you grow up in a very negative environment that is always telling you how broken, wrong and bad you are, things are very different. You already struggle to figure out the world, to fit in somewhere yourself, and your very own family is also telling you one way or another that you don't fit in with them either. It is easy to see how some kids can be lead into thinking that they would be better off if they were never born, or worse, that they would be better off dead.

I'm not suggesting that parenting always or definitely leads to suicide. There is a whole bunch of other factors that lead to that. But really, telling your child how broken they are all the time is not good for either them or you. Is that really what you want for your child? 

I say better to be safe than sorry. It is better to know, than to deny and reject. It is better to say that there is a set of symptoms presenting, and that it's worth looking into than to just think that things will get better if you just force them to do things they don't want to do, or if you keep telling them that they are okay (when they are clearly not!), or whatever. 

KNOWING is the cure. Knowing what you're dealing with, knowing how your child's brain works, knowing that they are going to have a set of strengths and weaknesses, for their whole life, is what helps you to move forward with more confidence as a parent or caregiver. Knowing that your child will have issues socializing gives you a place to start showing them how. Not knowing means that you just expect them to know, and if they don't, that is very discouraging to the child, and to you as they continue to disappoint you.

There were little things I remember that I wish my parents had known. Like the fact that my system was totally overwhelmed by yelling and that was what caused me to freeze up and be unable to answer when they yelled. If they had understood that then they wouldn't have reacted so much more angry when I was suddenly "refusing" to answer them. If they had understood that I would NEVER be "socially" skilled, maybe they would have let me go ahead a class, as was recommended when I was in elementary. If they had known, things might have been different. Instead of just being confused about my behavior, there would have been a reason.

Instead of my sister being put in the position of "what is wrong with your sister", she would have been able to say "that's just the way her brain works/just the way she is" or something. Instead of feeling so frustrated with me, maybe she would have been more equipped to help me, or at the least, not hurt me. She survived (it seems) by trying to distance herself so far from me so that she was accepted even though I wasn't. Those events have shaped our relationship as adults, and from my perspective anyway, it is not what I would expect or have pictured for a relationship. It is pleasant at times, definitly better than it has been. But it is still uncomfortable at times.

So many things might have been easier and different if we had known. So, I'm telling you, even if professional diagnosis is not for you, taking a self diagnosis still is helpful in your personal or parenting journey. Even if you/your child is not autistic, I think that viewing them differently for their behaviors is a good idea. Kids are not "out to get you". They didn't come into the world to ruin your life and take all your time. But especially if they have some suspicious behaviors, it is probably wise to view them through a lens that fits them, instead of the lens you want to fit them.

I don't know if this made any sense. I was interrupted while writing this post and even though I read through it I'm not sure it is coherant.

I just fully believe that we should start viewing things differently. Stop being so afraid of autism. Start accepting that yes, people have autism, more will have autism, might even be your kid. But it also might be that eccentric neighbor who is not and will not be diagnosed. Someone you work with who can be difficult? Maybe they do too. Even in the 90s when I was in school, no one even brought up autism as any explanation for anyone's behavior. So diagnosis are actually a new thing, something that is becoming more common because we have learned a little about what it is. But there is still a long way to go to fully understanding what it REALLY is, instead of being something to fear, it is something that makes the world a colorful, unique, diverse place. :)

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