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.

Here are a couple of links:

High and Low Functioning Autism

What Does "Mild Autism" Mean?

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!

Holes In My Memory

I am the kind of person who remembers everything. I wouldn't say I have a very good short term memory at the moment, because keeping three kids alive is taking up much space these days. But typically I can remember really random events that come up sometimes and I can recall things you may not have remembered saying or doing. And I'm not going to make things up, I really remember things clearly, and I'm not going to lie and say otherwise.

But more and more I've discovered that there are giant holes in my memory. There are entire events that I don't even remember at all. And strangely enough, many of those memories that I'm realizing I don't have stored in the database are memories of Girl Scout events. 

I have been wondering for a long time now why so many of these events aren't in my memory anymore. I mean, there are pictures of them, so clearly they happened. But why don't I remember them?

I remember one big sleepover at Camp Austen. I remember one day camp we did where I was in charge of the little kids and all of a sudden my grandpa showed up saying he was told to come get me, and another girl was all of a sudden in charge of the little ones. I remember several mall sleepovers, maybe mostly because they were right on or around my birthday; in fact my 16th birthday was celebrated in a mall overnight with like 300 other girls, by FAR the biggest birthday party I ever had (don't crush my story, I need this one - without the mall sleepover I wouldn't have even had a party). 

But there are giant things we supposedly did that I have no clue. My mom and I were kinda mentioning one the other day that was apparently in the boundary waters somewhere - not far out because it wasn't a "trip canoeing" or something, but some kind of other stay somewhere maybe by ely, from what I'm gathering. While I remember making lavender "sachets" (which I literally still had and still smelled the same/just fine up until a year or two ago), I don't remember much else. We supposedly did facials, which I don't quite remember. I remember a room all painted in white, but I don't remember what we did in there or where it was or how to get there or anything else. I don't remember what we ate (I probably didn't like it) or what else we did. I don't remember if it was an overnight stay or just a day. I really have no clue. I guess based on the pictures I might have thought it was a part of Camp Austen. 

I also remember one other event at the bog walk, but only because there was a cute boy involved.

I don't remember so many things. I feel like there was more, a lot more. I know we did more than one day camp, but I couldn't tell you where or what. I know we had meetings, and I would guess at least once a month, and you would think that I could remember something I had to have done like 60 months at least...

Girl Scouts isn't the only thing I have huge memory holes about, senior year there are a lot of things I completely don't remember. From what I'm told, 2001 was the last huge year of mass army worm invasion. You would think I would be able to remember massive amounts of army worms on every surface of everything everywhere, and slimy roads and stinky worms. You would think that would be something a girl couldn't forget. But I did. I don't remember them at all. I give myself the excuse that the emotions of graduating and leaving were pretty intense and my brain was preoccupied with all that too much to think about and register worms and leafless trees. You would think that driving to Togo, instead of to a friend's grad party, would have made the army worm invasion pretty obvious, right? Musta been listening to some pretty awesome music to be distracted enough to miss that, right? 

 I know there are times in life, too, when I don't really care about something so I will literally not pay attention to it. Like the above story, I probably did "know" where my friend lived, I'm sure he had told me, or something, but I didn't plan on ever having to go there, especially not on my own, so I didn't "care" or something and I didn't pay attention all those years and just missed that information totally. 

I also can remember three houses where my uncle used to live, but I can't remember houses where another aunt had lived. 

So, yeah, I don't know why there are some really intense memory lapses, almost like a chapter was ripped out of the book of my life. Like, where is my baby blanket? You would think I would be able to remember something as important to me as that, right? But somewhere in all the business of getting married, it's gone. Despite having my doll, no problem, right where I thought they both were.

Nothing drives me crazier than losing something. Nothing drives me crazier than forgetting something either, which is kinda the same thing. 

Any other aspies have the same problems?