Thursday, May 24, 2018

Aspergers in Girls - Misdiagnosed and Underdiagnosed

I'm going to refer you over to another page today.

AS an aspie who wasn't diagnosed until 29, and even then the tester kept saying how "well adjusted" I seemed and how I "didn't seem autistic" and she didn't think I was autistic at all.... I feel very strongly about this.

Women are not men. Men are not women. We will not act the same. We will not cope the same. Sure, it doesn't mean that women will ALWAYS act one way and men will ALWAYS act the other. We are all different. Sometimes autism in girls is clearly apparent. However, I think on the aspergers side of things especially, we tend to do things quite differently than boys.

Women are usually more socially wired. Even if we don't consider ourselves "social" or "extroverted", for some reason we have an inner game that goes on that makes us observe, or just deal with it differently.

The reason I mention the social thing first, and by itself in this post, is that the majority of our lives are just fine to us. It's usually when we are in a social setting that we and/or others notice our drastic differences. Those are the times when we feel the most different and the most foreign.

This post is excellent, and totally true. It's time that the professionals get their brains into a different kind of thinking so they can spot more of us instead of giving us random disorders like bipolar, personality disorders, anxiety, depression.... all of which can be PART of autism, like an accessory to it. But it is not the whole picture. We need a whole picture of mental health, not just one facet.

I was diagnosed with autism in my 40s. It’s not just a male condition

Sunday, May 6, 2018

Weddings, Getting Married, and Being Undiagnosed Aspergers

HEY! I know, I know, I haven't written in a long time. 

But a question on another bloggers post has inspired me to write. I don't think I've written about this at all in the past, and it seems that maybe there isn't much out there written about weddings from a bride or groom who has Aspergers. So here I go.

I've been married almost 14 years! Even though it has been a while, and I might not remember specific details, I do remember and am affected by things that were happening around my wedding in very strong ways.

First, I have holes in my memory. There are things, times, places, details that I do not remember. When you have Aspergers, life can be overwhelming at times, even at happy times. Therefore your brain, in self preservation, will throw out details that you don't think you need to hold onto at the time. I wish it weren't that way, but it is. It is the only way to maintain a form of sanity!
ADVICE: Write things down. I know I had a bride's journal thing, and it's actually quite nice to look at some of the things that maybe we considered, the collection we used for bridesmaids dresses, stuff like that.

When it comes to the dress, start shopping AS SOON AS POSSIBLE. If you really like a dress, ask if the shop can keep record of what you liked. If you're lucky (like I was) your dress will go on sale in a couple of months with a season change, and you can get the dress at a deep discount! I have yet to EVER see a dress like mine again - especially the neckline was beautiful and unique and unlike anything I'd seen before or since. Actually kinda frustrating I cant find another dress that style, I'd have bought a bigger size :P

I remember that not too many months before I got married, I kinda chopped my hair short. Like a bob or something. I'd always wanted to have long beautiful hair when I got married, and not only did I not plan that out very well, but my thought that it would grow back out was rediculous. AND because I had this curly haired vision of what I wanted, AND because my small town hairstyling shop was mostly for older ladies.... I ended up with this atrocious curly bob. I didn't think I would ever be the type of person who would be concerned with that, and yet, I am so annoyed with myself. I should have been MUCH more simple, even if I couldn't have the long curly hair I'd always wanted.. I shouldn't have even tried to have it curly at all! UGH! I'm so mad at myself. I wish I had just been able to let go of the curly hair dream especially since my hair wasnt long enough to make it work the way I wanted.
ADVICE: Don't cut your hair off anytime within a year of your marriage. Unless short hair is your thing. Let it grow, and have it trimmed right before you get married, and you can do almost anything at that point for hairstyles.

I remember that I loved the part of picking and choosing everything. And since we were broke and pretty much putting it all on with our own little money (or, rather, my husband's) we had a lot of people volunteer to do and make things for us as a gift. Like the flowers. So, I appreciate them, and they are beautiful and I have them on our shelf in our house. HOWEVER, what I said I wanted, what I had in my vision, and what I got were two different things. I wanted blue/maroon hydrangeas ONLY. ALONE. NO GREENERY, NO YELLOW. What I got was a few of those with yellows, whites and greenery, because "you have to have some green in there". Uh, no, actually, I don't "have to". Many brides don't! Why do I have to? Well, they all had a vision of what they thought it should look like and I had no control over that because they were making it for me for free. Sigh. My small town people had small town ideas and I had the internet and the ideas that I wanted. Stubborn people who didn't want to let me have what I wanted.
ADVICE: If you want something done a certain way, and you feel like someone isn't going to do what you want, don't just passively let them. Free isn't free if it follows you as regret into your whole life. I regret not standing up for myself and/or just plain rejecting the free help and doing it myself.

I wanted lavender. My husband (fiance) hated it. So we went with a maroon, which was... well.... gross. Gross is the word. If I had let go of the purple enough to go with something else in blue, or ANYTHING ELSE... I don't know - I don't remember how that conversation went.
ADVICE: Choose a classic color. Don't chooes the popular colors of the day. Black, blue, gray.. those colors dont typically go out of style. Red for Christmas weddings? Why not! But lavender, or maroon, was the wrong choice for a wedding at ANY time, even summer. It just did not work out in my long term mind. :P

I had a maid of honor living in another state, and unable to pick up her dress.. Then her dress ended up not having the top she wanted (that matched mine) so she had a top that matched another bridesmaids, and a third bridesmaid was different. Sigh.
ADVICE: having them choose their own style tops/skirts is nice and all, but if you're going for something specific, and someone can't get to a store to pick one up... it's going to end up messy.

AND one of those bridesmaids and I don't even really talk anymore, not because anything happened, but because distance and life and whatnot. There was another girl that came all the way across the state to come to the wedding, and unfortunately had to go all the way back home right after the ceremony... I wish I'd had her as a bridesmaid instead.
ADVICE: Don't think about who should be a bridesmaid based on silly things like "the areas of my life 'high school, college each year" - you don't have to organize your friends and your bridesmaids. I mean, I didn't, at the time I did feel close to all those girls. Today, however, I only regularly talk to one of them, my MOH doesnt ever speak to me anymore (I don't even know what I did, and I'm not the only one she's done that to), and I wished I'd chosen another girl I knew... All my friends were long distance ones at the time, but there were other options - even my SISTER... but we weren't really friends at the time. Tho her and a cousin came through at the last minute and sang a song for us for the ceremony, which was nice.

Food was a non issue. We had a lot of people again donating dishes for us, and a lot of people volunteer to take care of food. All we had to buy was sandwich meat (which was still one of the most expensive things in our entire wedding). AND my fiance ended up having to go pick it up the morning of the ceremony (I was oblivious because I was doing hair and whatnot).
ADVICE: outsource food. You don't have to pay someone to cater (unless you can afford it I guess), you can ask friends and family to just make a dish for a gift! It's actually a really fun idea and makes it really cheap and really simple. ;)

The previous year to getting married was a mess. I was trying to go my 3rd year of college. I had gone to a U of M school, then a state university, then a community college much closer to home. The first semester I was on campus, the 2nd I tried doing online courses. I was much too distracted, didn't have my own computer or internet, didn't end up buying many or even any of the books.. I can't even remember. I probably failed most of my courses. I don't even know. Sometime in the end of first semester, the place I was staying had a kid in charge while his dad lived in Florida. Despite my being in contact with him about payment, one weekend I returned and found he had moved all my things to the GARAGE. IN THE WINTER. It was a disaster. He literally just tossed everything, clothes and all, into a big pile in the dirty garage. I was devastated. Ruined my poster, my contacts (oh who cares, I hated them anyway, but I sure ripped him a new one, as did my in laws!)... 

I ended up moving in with some friends back home - my husbands best man. I was supposed to babysit their kids more often than I did, and probably clean house, but I was also distracted again with my upcoming marriage and probably said no too many times and I do feel bad about it.
 ADVICE FOR AN ASPIE: Take the year you plan your wedding OFF from any other big responsibilities like school. Your brain can only hold so much, and school on top of anxiety, making plans, etc. It will be too much, and something will give, and it will likely be school. At least it was in my experience.

I had my baby blanket all those years (I usually had it inside my pillowcase). I honestly do not know what happened to it between college and getting married. I don't know if I ever had it after I got married (we lived in a camper at my in laws for several months while we were waiting for our house to close). I've never seen it since. It haunts me. Seriously haunts me. I hate few things more than losing something without explanation. I almost just wish I knew what had happened to it because at least then I could be at peace that I know where it went. Heartbreaking.
ADVICE: If you have things that are special to you, box them away somewhere safe NOW. And, I mean somewhere genuinely safe, not in some persons storage camper/house/trailer. (Tho, maybe I had done that, there's a bit of a hoard going on at my in laws, and it could very well be there somewhere in some box that no one remembers about. There's just so much stuff that there is no way they could possibly know what it all is. Someday when they are dead and gone, if I run across it, I will be a little more than annoyed. Tho, they swear they knew where my stuff was all that time, and we've "looked" .... I'm not going to be convinced until I've seen it all. Heck, my parents house also has a bit of a hoard and it could possibly be there, but I've looked and not found it before, so I don't hold my breath.)

Oh - don't panic if you have to introduce someone to your husband and you cannot remember their name! I had been going through the whole line telling my husband everyone... and doing rather well. Got to one of my grandma's oldest brothers and I COMPLETELY BLANKED! It was just GONE. I know the guy really well - he was one of the great uncles and aunts that we saw quite often! And it was one I was embarrassed to have forgotten. But my brain was quite gone!
ADVICE: perhaps line up so that his parents are near you and your parents are near him and ask THEM to do introducing. That way, you can rest your brain about all the names and faces, and yet they all still get introduced.

Oh. My. Word. Photography.

Don't just let some family friend do it without seeing examples of their work. I probably could have told you the guy we had wasn't going to be adequate if I had seen his pictures. But I trusted my husband and his family, and it was FREE.
ADVICE: This is at least ONE area where you should never ever ever accept a free gift for your wedding. Unless you KNOW that the person is a pretty good photographer, have seen their work, and can prove they have done a good job for something in the past... This is NOT the time to save some money. Looking back, I would have gladly went and gotten a CREDIT CARD (and I DO NOT RECOMMEND DEBT) just so that I could have some good wedding pictures today.
See, we got married at a lake, facing the lake, which is beautiful in principle. In practice (and in pictures)? It was a nightmare. We are all washed out. The colors are dull, our faces are dark, and it was just no good for photography. A GOOD photographer, a professional photographer would have told me that turning around 180 degrees (or maybe even less) would provide a beautiful green lush background that would have made us stand out and look beautiful instead of being washed out. Although, most professional photographers would honestly have been able to do a better job of making sure we werent washed out too, whether it would have been a setting on their camera, or their bounce flashes or whatever. The mere availability of professional equipment can make the difference between horrible pictures and really good ones.

There are a precious few shots that are even good enough to make into an 8X10.

AND if you see that shot that you LOVE and it's someone else's picture, make sure you put your hands on it, and you get copies made YOURSELF instead of asking someone to do that for you. I had seen ONE picture of my husband as I was coming down the aisle. The shot I wanted. The shot that I ALWAYS make sure to get when I take wedding pictures. And I'm sure I told them to make me copies and I never saw it again. I should have put that thing in MY hand and made the copy myself. I can't even remember who it was that had the photo!

I still want to be able to fit in my dress and have really nice professional pictures taken. Maybe someday I will actually fit into my dress again. I didn't make it for my 10th, and I'm sure I won't for my 15th, but maybe the 20th will be right. :P 

I'm serious. If there is one thing you should make sure to truly invest in, it's photography. Everything else is eaten, broken and thrown away. But the photos last forever. At least, that's the intention.
Anyway, this is the kind of post where if you need something specific answered, please ask! I may remember more things than this, you just have to let me know what you want to know and I'll see if I can remember! I hope this post at least gives you a starting point to think about things surrounding your wedding if you have Aspergers. Try to relax, try to breathe and remember that with the exception of pictures, it doesn't last forever. It is just one day, and I don't advocate starting your new life together 20,000$ in debt like the average bride in the US. You do not have to have a huge expensive wedding. Our entire wedding was around 5000$, and most of that was the lunchmeat (most of which didn't get eaten, and I'm almost afraid it might still be in a hoard somewhere in a freezer ew).

Anyway, again, anything else you want to know? Just comment below!

Saturday, February 3, 2018

Losing It

So, I'm kinda a controlled person. Like, when I left home, I took my things with me. I didn't have that much, but what I had, I took. I didn't see why not. 

Somewhere between my 3rd year of college and getting married, I lost my baby blanket. Yes, I had my baby blanket in college. It was mine, after all. It was a harmless thing that I kept inside my pillowcase. Well, either way, it vanished. I don't know. I had a couple of moves that last year before getting married. One was a house in the town I went to community college, and the stupid kid who was taking care of the place for his dad while it was supposed to be for sale, well he got some kind of ego trip and threw all my stuff into the garage and LOCKED IT. Boy did we rip him a new one when we (my bf/future husband and his parents) came down to get it out of the garage where he had basically tossed it like a teenage boy and locked it. Froze my contacts (fine, I hated them anyway... but its the principle of the thing). He didn't box it up and put it there, he hauled it down armload by armload and tossed it there. I was late paying but it wasn't as if I hadn't been communicating with him. He definitely should have said something BEFORE moving my stuff, I would have come and moved it my freaking self.

After that I lived with some mutual friends of my husband for a while. It was complicated and confusing and I was overwhelmed with wedding and couldn't really hold my end of the babysitting bargain a few times, but they were (and are) really good friends, despite not seeing them much anymore. I really appreciate what they did for me.

I don't know where in this mess my blanket went missing. I don't remember. But I'm heartbroken as I've looked for it for 12 years and not been able to find it. 

When my brother was a baby, he had this adorable outfit. It was red and blue and it was overalls with a coat and my mom took the most adorable pictures of us out back by a beautiful maple tree in the fall. When my oldest was a baby, I had the outfit and we did pictures also, even by the same maple tree! We even did pictures with Bonnie, despite the tree dying and most of it fallen over, with my 2nd. After that, I thought maybe my sister wanted to put it on her kids for some neat pictures, and I thought I was done having kids. Well, I wasn't and I asked several times for the outfit back. She is NOWHERE NEAR as obsessive compulsive as I am. They were apparently done having kids and started to give things away... and I don't know how, and I don't know when and I don't know where, but the outfit is gone. I literally looked in every box in her garage. It's gone. Not only would I have loved to also have my 3rd in the outfit, but the long term intention was for my brother to have it for his kid someday. And now, it's gone.

And I'm, again, heartbroken.

Just recently, we noticed that there were 6 covers missing for our throw away tupperware. AND one of the cups from the kids' car seats its gone (and has been for a long time). NEITHER are a big deal, really. We use the cups in the car for the two little ones to have a snack, but I don't know where the 2nd one disappeared to. And it's not like I haul food around the world or something, I don't even put them in the dishwasher because it's just not worth taking up the space, and I have things to hand wash anyway. So it goes from the cupboard, to the counter to the fridge, to the sink.... WHERE could they POSSIBLY have gone?!?

Again, these last two things are not important. They are just the "straw that broke the camels back". And every time something mysteriously disappears, I'm mystified and reminded over and over about the things that actually matter to me that have disappeared. How heartbroken I am over my baby blanket and our "family heirloom" of an outfit. And how angry I am that things disappear when I let my guard down for a moment or time period because I want to be nice, or share, or trust someone. And it only proves the one thing I'm the most scared of as an aspie: trusting someone. 

I think it seems like it's common for people with aspergers to be controlling of things, situations, conversations, play... because if we aren't in control, we have to give up trust to someone else, and that someone else might not live up to that preplanned social thing we have written in our mind to help us ease the anxiety in our minds over how something is going to go. 

And when somehow that trust gets broken, it only proves to us that we were stupid to trust them, stupid to share, stupid to let go of something that mattered. I feel stupid, disappointed, frustrated, and heartbroken that I trusted and then ended up losing something that mattered to me. 

I don't see myself as a materialistic person. I don't have a house full of things that I can't live without. But I am a nostalgic person. And there are things I have that I think of as bigger than they are because they are a part of who I used to be. Like notebooks full of diary pages. My intention is to take pictures of each page and digitalize them, especially since we found them after years of them being in the "loft" of the garage... and bugs and slight mildew got to them. Then I got pregnant, had my 2nd, followed by my 3rd just when I thought I had it together enough to start doing things again... and I'm hoping that eventually I'll get to it again. 

Does anyone else feel this way? Is there something YOU perseverate over that you've lost? Do you feel like you lose your mind when something disappears, whether its socks or tupperware lids? Is this crazy? How do I heal my broken heart over the few things that really mattered to me? Why doesn't God help me find them or prevent them from being lost, knowing it matters? Is this some way of making me not attach to things (even though I feel like I am a bit MORE neurotic about things now because I've already lost things)? 

I don't know. I just had to get this off my chest. 

Sunday, January 21, 2018

High Functioning vs Low Functioning

I might have said this before, but I seriously do not like the labeling that NT people do with regard to people with autism.

Basically, I think that Autism is this scary word/thing that people want to avoid connecting to their children at almost all costs - including completely ignoring the struggles their child experiences as being autistic at all.
In that effort, even in cases where the label/diagnosis is unavoidable, people naturally want to minimize the thing they are afraid of in order to make their situation seem like it's less than it is.

To be completely honest, there is a varied level of "severity" of sorts when it comes to the ability of a person with autism or autistic person's ability to live on their own. Yes, there is a range of difficulties parents experience raising their children, even under NT situations.

However, we should still be careful when assuming and labeling someone's ability to "function".

Here's another post on Labels

The thing is, when you meet one autistic person or person with autism, you've met ONE. Each of us still has our own likes and dislikes and has our own thoughts. I refuse to believe that any living human is a vegetable. Just because they cant verbally express what is in their brain doesn't mean there is nothing there. We assume there must be, and give them labels like "severe" or "low functioning", when we could be TOTALLY wrong about what's going on on the inside. Imagine your body just not working right, and hearing people talk about you in terms of your function when your brain is screaming out "I AM NOT I AM RIGHT HERE!"

In my opinion we need to be doing more to help these people communicate by giving them some sort of help, or device or whatever. But I do have to back off and say that I am not really aware of what is or isn't done now because neither I or aspiekid have that particular spectrum of autism.

At the same time, treating someone like they are just like everyone else, when inside their head they have significant struggles with social cues, eye contact, and the whole laundry list of something else, and holding them to the same standard as everyone else isn't really fair. With adults this can be less pronounced for two reasons: 1: An adult Aspie is more likely to have adapted and sort of learned different social tricks, especially, it seems, in females and 2: There is a different sort of pressure of adults than there is over children. We expect children to meet certain standards of what they can do at certain ages, and if they don't it is obvious. With adults, there is less measuring against some sort of developmental scale.

With children, as teachers, parents, relatives, whatever, we tend to automatically judge them based on their level of age or grade or whatever. We know that at around 1 year old, babies usually learn to walk. So when they don't, we panic that something might be wrong (though less parents panic about that because sometimes you don't really want your 1 year old walking! LOL). 

The thing is, when you expect a kid with autism to answer your question RIGHTNOW, or if you expect them to be able to hear you in a crowd or while a show is on, or if you expect them to be able to follow steps consistently to go through a routine with little to no help... these are things that autistic kids might have a little more trouble with than NT kids. I mean, kids will be kids, but the expectation that just because they are a certain age and they SHOULD be able to do something doesn't mean they can actually do it. If a kid is "high functioning", as a kid they are likely undiagnosed, which means that they get into more trouble for not being able to do things that people think they should be able to do.

I hope I'm making sense. There's an expectation if someone can verbally function and appears to everyone to be able to manage their responsibilities, then we expect them to at all times. There is no allowance for times of stress or anxiety or overwhelm that makes them unable to do things. I can imagine (because I've both lived it and seen it in my aspiekid) that the kid is thinking "well, that would be nice to please you by doing ____, but right now my brain has been hyjacked by this crippling anxiety of ______ and I just can't and I'm even MORE overwhelmed by your expectation that I should be able to".

Anyway, that's my post on function labels. I think other people do a much better job of it than I just did, but I had to get some words out. Today I'm feeling as if I'm not really able to get my message across very clearly, as I am very distracted. But I hope this helps a little on this topic.

"Are you really....?" Referral Links and My Perceptions of my Church's Opinion on Aspergers

I'm going to do a bit of referring today. This means you might have to do a bit more reading to fully understand what I'm saying. But I hope that you find it worth the extra reading.

My Response to "You're Not Really Autistic, Are You?" 

I'm Ever So Sorry. I Really DON'T Look Autistic.

I find these to be extremely true for me. I have had plenty of people who think they are being kind by saying that I dont "seem" autistic. Listen, just because you seem rude right now doesn't make you a rude person by nature. That's the nice way of saying it. But seriously, none of us "seem" like our struggles are that bad to the normal person we know.

It also feels like a rejection of who I truly am. Yes, I "look" just like you! I pump my own gas! I go grocery shopping! Just like in that celebrity magazine where they say the celebs are just like us. Autistic people are just like you! Except our heads work differently. The stuff you can't see. Unless its "Silence of the Lambs" or something. (No, I've not watched it, I've only heard about it.) But even then there's nothing to see.

Which leads me to my church. I don't know about yours (if you have one), but I have noticed something a little disturbing within the medical/mental health professionals that are connected to my church or its publications. One even went so far as to straight up say that the people who would be considered "high functioning" (another label that I HATE to use) aren't really autistic at all, according to him. So basically, the idea is that people who are able to "look normal" have some quirks and differences, but they're just like everyone else with their own quirks and differences. Completely discounting the fact that we are still distinctly different than people in ways that have perfectly been explained under the umbrella of Aspergers. Until recently, it was a "professionally valid" diagnosis. But even at the time when I was diagnosed, it was beginning to change. They said it was going to just now be labeled under the autism spectrum. What I'm actually seeing is that now the people who would have been Aspies are being treated as if they weren't at all.

What of that? I tend to run on the "higher end" of diagnosis spectrum. What would it have looked like if my diagnosis had come back no? Honestly, I wouldn't have even believed them and chalked it up to one more thing that I know more than my medical professional.

This wouldn't be the first time or subject that I knew better of, and it probably won't be the last. I often still flirt with the 5 year obsession with tongue ties and the other oral issues they cause and are related to, something that almost every doctor won't recognize, won't diagnose, and won't treat. The ones that do don't take insurance, IF you can get insurance to cover the procedure anyway because, as with doctors, they won't recognize the issue as a medical issue that needs treating. Private insurance, it seems, isn't as picky, so some people still get lucky and get it covered. Beyond the procedure is the therapies that are pretty much required to help change the muscle memories, especially the older a person treated is - and this is something many adults have as well and can greatly benefit from having treated. It's just a huge subject and I've done a great deal of reading from both other people who have had theirs or their children's treated, to medical professionals who actually treat and try to train others to treat, and even a few therapists who deal with oral issues and retraining. Anyway, you can tell, I get rather obsessed.

So what happens to those people who, like me, are Aspies, but get told no to Autism Spectrum? There are so many undiagnosed adults out there. I'm sure many of them are doing just fine and won't seek or need a diagnosis. Still many of them are out there having so many struggles and being misdiagnosed as other things. In some cases, the effects of these misdiagnosis, horrible things happen - I know one friend who was not allowed full custody of her children because of her past history with multiple diagnosis of mental health issues (and a lying, abusive, narcissistic ex). All things that were actually Aspergers, but was misdiagnosed by uninformed doctors.

But back to my personal thing...

Do I expect too much from them because they are Christian? Or because they are the same church as me? I think maybe that's what I've done. Maybe I expect more in general. Maybe I shouldn't do that.

But really, where do they get these ideas? Ignoring the true to life experience of so many of us, and even ignoring the actual diagnosis by other professionals? I don't know.

So then why do my differences and quirks line up identically with so many other people, so many other women in particular? If "we are all different and quirky yet still normal", would you really find such a large group of people who finally found an "explanation" for their unique identity being so alike in so many ways? And what about those people who now "don't fit" the full ASD diagnosis, but are still Aspies? Argh. 

Why High Functioning Autism Is So Challenging

Why is it so challenging? In addition to the list of things at that link, I would say that the most difficult thing about having "high functioning" autism is that it isn't high functioning at all. You can have non verbal, physically disabled/unabled people who have vibrant and intellegent minds with little to know problems with executive functioning or whatnot. Yet too you can have verbal, brilliant people who cannot handle a simple change in routine or schedule. To say that those experiences are invalid, or don't exist, or don't allow for a person to be diagnosed Aspie is simply wrong.

The person who ran my Autism testing didn't necessarily believe me either. She said I was "too verbal" and "made eye contact" and I've had other professionals tell me I was "too emotionally accessible".  Until she got to the specific autism parts of the test, and she was like "oh, there it is!". Even she couldn't deny what she saw once she got into the right parts of the test.

The thing is, especially as a female, we study, and we learn what the rules are. Just because we can perform the rules during an appointment doesn't mean that the struggle to do those things isn't there. They also don't see the exhaustion from "being normal" that comes after the appointment.
I mean, isn't the "rule" about talking to a counselor that you share your feelings? So, when I talk to a medical professional, whether a specifically mental health or just general about my feelings, the rule is you talk about them. It doesn't come organically, I have to plan for it, think about it in advance, almost "script" myself as to what I'm going to say. Often times my inner "script" doesn't include the variety of responses the other person gives either, and I suddenly become deaf because I don't know what to expect them to say, so when they say something, it takes me longer to process it.

Does any of that make any sense?

All I'm saying, in the end, is that I think we know ourselves. Many people self diagnose, and I don't think its necessary to tell those people they are wrong. They already know themselves, they've finally found an answer to their ENTIRE LIVES. To tell them that they are wrong is probably harmful. And to those people who aren't really looking, the other issues they struggle with would be easier managed through the correct lens.

Maybe it isn't right to have a label for every different kind of person. Maybe it makes us too much "us" vs "them".
But at the same time, having an identity and community of people who are like you makes you feel much less alone. It helps you make sense of the struggle in your life. It helps you to find a community where you're particular kind of crazy is welcomed and understood, sometimes for the first time in your life.
And that, as I've said often in the past, is 90% of the cure.

And I really need to write a post about how I feel about the label "high functioning". I did touch on that here, but I think that deserves it's own post. :P

Thanks for reading!

Thursday, January 4, 2018

Tony Attwood, Autism in Girls

I haven't writing in a while, but today I watched a FABULOUS video.

If you watch it, you can follow my commentary.
Here's the link:

He talks about two ways they might play. One is sitting alone and playing and will stop any of their advances to come and play with him, or be the bossy one. I was the bossy one. My oldest son is the bossy one. He is like a director. He knows what role each person involved needs to do to complete his idea of what play is in a situation, and he isn't afraid to tell them. Thankfully, so far, he has a mostly willing couple of siblings and some very kind friends who just back off on their own if its too much.

He talks about girls coping. The study, the watching, the mental note taking. I do all of those things. It takes me a while to warm to an environment, and basically, I will imitate. I've done it for my entire life. Mostly, I've caught myself imitating my dad's way of communicating. Maybe that's the default. But I've copied people I'm with too. It doesn't seem to work to win friends, for some reason.

He talks about having phenomenal factual knowledge. SERIOUSLY. I'm constantly looking up things I'm obsessed with interested in. Constantly. It's an addiction. I HAVE TO LEARN THINGS ABOUT IT. It could be something I'm experiencing. It could be something I came across. I'm wondering now if it always has a personal connection for me, it probably does for me to be interested it must be personally relevant. But the INTENSITY of this interest and addiction to learning about it takes over my entire life at times.

In contrast, perhaps, I wasn't interested in people pleasing. But I would copy and mimic. 

I would get greatly into books. It was probably what I was doing. I can't believe what he says about Hermoine. I only read the first book or two, and that makes TOTAL SENSE. 

"Alternative World" was so true for me. I remember pretending to be and be with some of my favorite movie characters (kids movies). I also have perfect pitch, and hear and pick up accents really easily. I'm aware of it and end up trying to stop myself, even though I actually LOVE it. Unfortunately, for some reason, I cannot unlock the ability to learn other languages well. :P 

I never saw anything wrong with pointing out other people's inconsistencies. :P I do get it as an adult, and I do bite my tongue more often than not. But I cannot help my thoughts and frustrations at how people are messing up :P I'm also not very good at being gracegiving to myself. I hold myself to a high standard, and everyone else, perfectionism is a struggle for me. I think I've come a long way, but it is a default reaction, so it is hard to stop.

I wonder if I had a persona. I was a goody two shoes. I was the teachers pet. I don't remember downloading on my parents. Maybe my sister? I was pretty much a rule follower either place.

I thought people should like me because I was very good.

Special interests were a big thing. And I definitely was interested in things over the years. In another video with Tony Attwood that I have broken down in a previous post (here, here, here and here), for a good portion of my teen years my special interest were my teachers, and especially one or two specific teachers. You can read more of my thoughts on it in the posts linked, but as he said, it wasn't the interest itself, because many girl students like their teachers, but the intensity. And I definitely had intensity.

I also had imaginary friends, not to the point where they had to sit at dinner with me or on the bus with me, but I would pretend I was flying with Peter Pan or Darkwing Duck or that I was Maid Marion in Robin Hood. I also talked to myself in a mirror. Funny. I sang to myself in the mirror. :P Like I was a music video. Ha!

I did write some fiction too... Poetry as well.

I loved drama. We didn't have a class, but we did do plays and I liked that quite a lot! Even though I was nearly terrified of it. But I did have a lead in several things.. 

I was never really someone anyone else wanted me to be... except maybe the people who wanted me to follow the rules and be the "perfect" student or daughter.

I was very interested in psychology! Thought about going into it myself. Turns out, maybe I should have, it would do a great service to people with aspies. ;) 

"I have done such a great job at pretending to be normal that nobody really velieves I have Aspergers." My life story summed up. So many people retort to me "You act so normal! You are so emotionally open!"... so??!

I have that book! Love it. I think everyone should read it to learn the other side of the coin.

It is interesting how many people I can plug into the list he has: Pathways to a Diagnosis for a Teenage Girl. I know many people who have dealt with those different things. The problem is they get a "surface" diagnosis, but never the real thing. Frustratingly, its a misdiagnosis, and they end up still just as lost because it's not a complete explanation. 

Hahaha - He specifically mentions reading about the Titanic. That would be my son. 

Loved adults, they had answer to things, kids my age WERE stupid and boring. Yup. 

Anxiety. Worrying. Have you read my blog? I don't have to comment on that. My sensory? Screaming, loud kids, either having fun or not. Crying babies hurt me to an emotional level, I just want to comfort every single baby ever.

In my coaching that I'd been doing, catastrophizing was on a list. I don't, or didn't think that I had much of a problem with that. But if I think about it in other terms rather than catastrophizing relationships, I tend to catastrophize things in life! When my kids are sick, its "oh no, how sick are they going to be and will it be an emergency? (Along with the accompanied fears of being judged for not vaccinating again, thanks Dr Jerkface). When something seems to be wrong with me, it's not like I jump right to cancer, but I jump to some other health fear. I had anxiety for MONTHS before I went to the doctor and had tests done to determine whether or not I had diabetes. I did not. Interestingly, anxiety and diabetes have similar symptoms. So I wasn't fully invested in that diagnosis either, I kept justifying that it could be other things (which is why I put it off for months).
So of course, in hindsight, now I know I catastrophize greatly, just about different things. What he talks about a special interest in friendships, and the catastrophizing in that when the relationship ends, or if there's just distance in the friendship, they haven't talked to me so they must not like me anymore.

Mutism: I've experienced that.

Doll play: I did play with dolls until I was much older than normal. And I kept them. I have them still. 

I agree with the ideas of boys having more fun. I didn't exclusively hang out with boys, and I didn't dislike girls, but I do remember having a few boy friends that I felt closer to. There was just less drama. I never wanted to be androgenous, but I didn't realize my own development unless it was pointed out to me. One instance it was the whole "I bet you can't touch your elbows behind your back" trick, which I could indeed do, which was met with "WHOAAAs" which at first I thought was impressed that I did it, but realized there was chest involved and became kind of annoyed about it (seeing I still remember it pretty clearly, and the faces of said boys who did it as well).

I never did dispise being a girl, I never had those things.
I did love dresses, but I realized at a certain point that it wasn't acceptable to wear dresses all the time after a certain point. I still had some, but not wearing them all the time. And I always dressed like a girl, and wanted pretty things. But a drastic thing about it was my lack of care for fashion. I just wanted jeans and a tshirt. I'm still that way. I would like pretty clothes, but if I wear anything "stylish", I feel wrong. I have done a few of those "stylist sends you clothes based on your preferences" websites, and I have only ever gotten a couple of things from them. I'm not interested in the fashionable stuff, and I don't feel like paying for their prices either. I was perfectly content as a kid to wear what my mom bought me, my sister wanted silvers and got a job to pay the difference. I was not interested in either clothes, nor working that hard for them. Nope.

The "recover in solitude" is a big thing for me. I literally need alone time. Like, totally alone. I'm not even sure my husband understands that. I end up regularly staying up late at night because that't the only time I am alone. I need it. I don't get enough of it to fill my cup.

Yes! Emotions. Either 0 or 60. And extremely sensitive to emotional atmosphere. I knew when my teachers were upset about things. I just FELT it. I didn't know why, but I always increased my efforts to give them a little treat, a piece of gum, or an "I think you're really special" note or something. Totally insane, probably, but I really felt something wasn't right and I wanted to right it. I'm sure there are other times and ways this happened, but I don't know about all of them. I hid a lot. I wasn't able to right the ship so I just hid and was in my own little world. School was a lot of work, so at home I remember just being in my room listening to music, or playing it, or reading. I have agreed with many perspectives that explain what the one quote about emotions said - that I feel every emotion of the people I'm around, but I don't always know what to do. I want to right the ship, but I don't know how, or don't know how it will be received.

Special interests! Intellectual orgasm! The links to my other blog posts that I linked previous in this post is where I first heard this term, and it was in relation to a person being a special interest. I've written at great lengths about that, so I'll let you go to those if you are interested.

I LOVE the comment about the British accepting aspergers, and BBC, and antiques roadshow! :P Those were all so great!

If you pause the video at 28:20, theres a slide he breezes over because of time on Emotions and the Special interest. It says "My emotional range is quite extreme and somewhat rudimentary. However, when I engage in my special interest on my own, I can access a greater emotional realm and landscape that is wonderful and safe for me, in that context.". I wish he had gone over that more, I would love to hear more about that. What it makes me think of is that engaging in my special interest teacher may have been exactly what I specifically needed to help me engage socially and feel safe at the same time. He was a safe place to be socially engaged, he never hurt me like the other students did, and he treated me well, engaged with me, and there were some times were I felt absolutely protected by him. It was wonderful, and I am glad for all of that.

"When listening I need to watch their mouth..." yes. I always watch peoples mouthes. What looks like I'm making these great contacts, but really I am mouth watching. All that is extremely accurate!! I was also a doodler (if you pause the video at 29:01 the slide there talks about that).

When I was a kid, yes, I was better friends with my teachers and felt I too was a generation ahead, prefering the teachers company to anyone else's. (29:06 slide).

Definitely was bullied.

Definitely didn't want to wear boys clothing, plenty of girls clothing had big pockets, and in the 90s we had those tiny little backpacks... :P I never got fashion. Will never get fashion. Mentioned this before (I knew it was coming, and just got that paragraph out early). Never felt wrong to wear girls clothes, but I didn't want the ones that were "in". I LOVED wearing baggy pants in school. They were in fashion, the JNCOs and whatnot. I didn't have any of those name brands, but I loved pants with bagginess or looseness or wide legs. ;) My parents wouldn't let me go too wild, but I think they appreciated that I actually wanted the more modest dress. I do not know what I would do today, I mean seriously?! Skinny jeans?! What stick person made this fad up? No woman (except Audrey Hepburn) looks good in those pants! If you have hips, we don't need to make them MORE OBVIOUS by making our ankles tiny! I just hate them. Even more, I hate leggings AS pants, I've seen way too many women's private areas. It is not ok.

I feel the same way about makeup as well, don't like it, it makes me itch. I never wear it anymore and the only time I think I would is if I had a photographic event and had a major blemish. Not that I don't have to try, because I always was this way about it. I can go a long ways with just a simple lip gloss (though these days its carmex LOL).
My hair must be wash and go!

I did have the vulnerability. Definitely had times where a guy was interested in me, and I was protected by God above (there's no other explanation for it) because I could have put myself in very vulnerable situations but somehow I was always safe. Again, my special interest teacher was involved here. One time I remember sitting with him outside the laundromat in town. I remember him specifically talking about this kind of thing, how some boys are only out for one thing. I remember feeling so fiercely protected. I have never forgotten him talking to me. It's as if he knew what I didn't, that I was extremely vulnerable and needed to hear that.
It would take me a long time to notice that a guy was interested.

But I wasn't really disinterested in sex, but maybe I was behind? I was always a "sex at marriage" person. So it wasn't on my radar of something to do as a kid... I wasn't disinterested in boys either. But it's an interesting connection.

I wish he hadn't run out of time. the Being a Parent slide looked very interesting!!! I fall into all those categories - tho of course we don't know the story on Liane Holiday Willey. But yes, I am all of those things.

So there's my running commentary on a video of Tony Attwood speaking on Autism and Females. FABULOUS video!!