People Are Crazy

(Disclaimer: I truly hope none of you take this personally or as an insult. I'm just venting and reflecting on my experience, and, well, people are crazy!)

When it comes to ASD, there are so many people who just don't know what it looks like. They could have read an article here or watched a movie there, or known some kid who is ASD. But they still don't honestly have a clue what ASD is or looks like. 

I felt a lot of judgement when I was talking about being diagnosed. People just simply didn't think that I had ASD. They really didn't. They wouldn't believe me at all ("You couldn't have ASD! You make eye contact! You have friends! You are married!"), they gave me excuses, ("Well, everyone is a little ASD in one way or another") or they would completely blow it off and not even address it.

With myself I found that few blew it off, but more often I was faced with all these excuses and disbelief! I knew something about myself, I researched it before I was certain, and I knew what I was talking about! Until you've actually been in the head of someone with ASD, you don't really have a right to say whether they do or not.

With my B, however, I have found more people to be blowing it off. I don't know what to make of it. I guess I haven't been up front with every single person about it, its a bit more sensitive because this is B's journey now. So out of respect for him as a young person, I am trying to be discreet and sensitive to how he may feel about me talking about him or whatever. It is difficult for me because I usually lean more toward being open and transparent. I don't typically like to hide anything, or to not share. But this isn't about me right now. This is about him. 

Anyway, those who do know haven't really commented on it. Is this because they don't know what to say? Is this because they don't want him to have a label? Is it because they doubt my parenting somehow? (Yes, insecurity is a part of the deal here.) 

When someone you know is going through the diagnosis progress, find out where they are at with this. Some people may be like me, and want to share with people they trust. Ask them questions and express your concern for them and their lives and journey! Most of all though, I don't think anyone would want you to just brush it under the rug and ignore it. I mean, if you find someone who does want you to ignore it, obviously respect their wishes. However, to me, it feels more as if you are denying that part of me, or my son, and that you either don't believe me or you don't believe that diagnosis is important or necessary. Those are your personal feelings, and you're welcome to them, but that doesn't mean you have to ignore this journey because you feel differently about it. This isn't about my parenting, this is about my son having a genuine brain difference, and we are searching out help for him to grow and learn and be happy and be able to deal with things like change and surprises or whatever it may be. We need these resources because my ASD is not the same as his ASD. My interests are not the same as his interests. You can't communicate with someone in Russian when they only understand Greek. So that's what we are doing. I hesitated a long time on diagnosis. I didn't want my child to be "marked" in such a way, and I figured I could deal with this on my own. (Once again, my independence is really strong here and I don't want to have to have help.) I thought that because I'm ASD, that I would understand his brain and be able to handle it. Sometimes I can, sometimes it is very easy for me to say "oh, thats just because hes ____ and thats ASD, and it's okay."

Anyway. Our first meeting went well! Brody was his splendid self, first shy and introverted, then he kinda went wild with the toys and everything else going on. I think he was running on nerves and the room was hot and new and everything. So I don't have to worry about him being anything but himself, and this is exactly what it's like always. It's also reassuring that he won't ever be anyone except himself, even around people he just met. That kind of thing is always encouraging, at least to me.

Can't wait to continue more on this journey. A week from Wednesday we start the "official" testing. Fun stuff. I remember it well. I can't wait to see the testing from an outside perspective instead of it being for me. 

Journey For The Boy

I know I may have alluded to this in the past, but the boy has some genuine characteristics of Aspergers. Spoke with his doctor since it has been difficult the past year or 2, and she referred us to a neurologist, who pretty much said that he is our little aspie boy! 

Tomorrow we start the official testing, or rather, the intake process for the testing. His first actual testing date is Dec 31, and then several of the following Wednesdays after that, until results at the end of January. As with myself, I'm rather certain that he is definitely my little aspie boy. I've known since birth really. But I need more tools to help him to be less anxious and more at peace, and get his going to bed under control. Something happened when he turned 6, and he stopped falling right to sleep! So strange, as he slept so well up until then. Oh well, getting older. 

So, here we go. Mostly, I just want probably what all parents want, for my kid to be happy, and for us to have the tools to work with the times that aren't so happy, and help him through that stuff, and set him up to be able to get through those times as an adult.

Autism & Genius

I fully believe each person, ASD or not, was put on the earth with their own unique gifts and talents. However, I have found it extremely interesting the intense talents that people with ASD can have. 

There of course is no way of knowing, but taking information about people who have lived in the past, we can piece together some pretty good pictures of people who may have qualified as autistic. It is very interesting how many of the famous people thought of as having ASD were brilliant at their craft. Beethoven. Einstein. Jefferson. 

But it makes sense doesn't it? 

ASD usually comes with a high level of social impairment.

Most NT people are highly concerned with social involvement. Now think about how much time that socializing takes up for most NT people. 

Now think about how much less time socializing takes up for an ASD person. It's naturally going to be less right? Probably much less. 

And with all that extra time on their hands, these people with these brains that are just wired differently, they just have all this spare time on their hands. And these are not bored people! They make all sorts of fun with their spare time.

Who else would be as laser focused on creating something besides an ASD person? No social interests, just pure focus on their craft. Their ability to be totally obsessed with certain topics obviously has a lot to do with which skill they have, and obviously with all kinds of time on their hands to work with their favorite topic, all  sorts of thoughts and fascinations can come up!

I'm fascinated by this idea. As someone with ASD, I have hopes that I too have some gift that is unique and special. Even if I don't even know what it is, I do know that somehow my gift is important and useful. This is true of NT people too of course, again we all have our gifts. But I fully believe that ASD people are not a mistake, we have the characteristics that we have for a reason, and we have a lot of spare time not spent socializing to work on it. :) Ha!

More On Females and ASD

I thought I would write a bit on this gender discrepancy involved in diagnosis of ASD. It is most commonly known or seen in boys, but that doesn't mean that girls don't have ASD. A lot of people seem to think that because less girls are diagnosed, that must mean that for some reason boys are more likely to have ASD compared to girls. This is becoming less true all the time. Girls do get ASD, so it isn't solely a male issue, and a lot of the girls who have ASD don't look like the boys who have it. It is a spectrum, after all, but yet girls seem to have their own set of struggles and symptoms, and especially are less likely to be diagnosed in the first place because they are less likely to act out or have obvious struggles or symptoms.

This is especially true in the upper ranges of functioning, like Aspergers. Aspergers is more known for its social difficulties, but you have to remember when we are comparing ASD males with ASD females, the same truths are going to apply to them as to NT males and females. If you were to think about which were more social creatures, most people would say that females are more social. This isn't true in every case, but generally, the stereotype is that women are the chatty ones. So when we compare ASD males vs females, that rule still applies; females are likely to be more social, but this doesn't come without struggle.

It is said most places that when females are on the spectrum, they learn to mimic others around them. I have found this to be personally true, right down to the accent or slang used. I quickly and easily start talking like others around me, although I am usually aware I am doing it and sometimes I consciously tell myself not to do it if I am in an uncomfortable situation. I also tell myself to get out of that way of speaking when I am no longer in that same social setting. 

I, and many other Aspie women, feel that ASD in females is highly undiagnosed. There are lots of ways that people can pass off the symptoms as "just being a girl". I found it very interesting when one writer put it "I believe that further investigation into this area would reveal that clinicians, teachers and even sometimes parents make allowances for certain behaviours demonstrated by girls, simply because they are girls" (This link) So basically, we are ignoring certain symptoms that are clearly ASD behaviors, simply because the person is a girl, and that must just be her "dramatic" girly behavior, or whatever. We excuse "fragile" girls from their obsessions with horses or dolls as "girly traits". Most ASD girls have obsessions just like males, but their obsessions are more "socially appropriate", and therefore no one thinks twice about a girl gathering and collecting things related to that obsession.

I also found this link very interesting as well, as it seems to show that rates of females are increasing faster than rates of boys, likely due to increased awareness and information. I believe this is showing that things are changing, and females on the spectrum are becoming identified based on their separate and unique presenting characteristics.

This will continue to change, I believe, due to increased female diagnosis, and as us vocal femaspies (I just made up that word haha!) as we spread the word about our feelings and lives and how we are affected by our ASD.

This and this are one of my favorite links about female ASD because it is written by a female aspie. :) She would know. Just like I would know!

Most of the ASD criteria applies to girls, but the perspective has to be changed. For example, as I (and as the writer of the last 2 posts) said, females present differently. That doesn't mean that ASD symptoms aren't there, it just means that those symptoms may be harder to see.

And as in yesterday's post, I fear that more females are punished for their autism behaviors than boys because they are more likely to go undiagnosed, or thought to not be able to have autism.

Journey....

My son had his doctor's appointment recently and we are starting the journey of testing him. I'm pretty confident that he is my incredible aspieboy. I have no fears or doubts about it. He is what he is, and has been since birth. I am amazed at the mechanical and engineering genius he could be someday. His brain works in ways that I can't even comprehend. And I've always known deep down. But it is getting to the point where we need some tools now to find out how to be better parents and for me to be a better teacher to him as well. 

The most frustrating thing is that I have Aspergers, so I "should" know how to help him. But he is different, so he needs different things too.

The benefit of the situation is that I have Aspergers. So I know most of what I'm dealing with.  But what about parents who don't, who have kids that do? I know there is a lot of denial out there because you don't want to have to face that your child has a significant struggle. Luckily these days for the most part kids aren't missed because the school system very quickly runs into problems and they usually get them addressed. Sometimes that is the first time the child shows any obvious problems. I suppose also that doctors will see and help with some of the more obvious ones before school age. My guess is that this happens quicker and more easily in kids who have obvious issues. But what if the kid just tends to be stubborn or annoying? What if they are just quirky? What if they are just peculiar? What if they are just their own person? Well, isn't everyone just their own person? That doesn't mean they are normal in all cases.

My biggest fear? That parents will try to punish the behaviors out of their children. I and so many other adults getting diagnosed these days are proof; you can't punish autism out of someone. It isn't bad behavior, it's brain functioning difference. And those brain differences are on purpose! This isn't a mistake!

However, it seems most parents these days would just view it as bad behavior, terrible twos, trying threes, pre-tween angst, typical teenager or whatever other child related negative title you want to give them. But no matter what you do, you will not retrain an autistic brain to not display certain behaviors. In fact, trying to do so can be harmful, just as it is agreed now that telling children to suck it up is harmful. Even if you succeed in forcing a child to bury their autistic behaviors, it is just going to show up somewhere else. 

I once read something about babies when my son was a baby. Fulfilled needs go away. Unfulfilled needs turn into undesirable habits. If someone is hungry, and you don't feed them, they will find a way to fill that need, even if that means eating paper. (Just an example). Feeding a hungry child makes the need go away (at least for that mealtime - haha!)

The brain causes different behaviors in autistics. Trying to force autistics to bury those differences will only show up as some undesirable habit somewhere along the line. You may succeed in burying whatever autistic behavior you don't like for the moment, but you're causing either you or the child to suffer with whatever the result of that is. I think it is better to support a person where they are at, rather than force them to be something they are not. 

I feel like this post is getting a little blabby and wordy, so I'll stop for now. But I wanted to pop in and post something, as I've been a little out of it lately. Thanks for following!