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!

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:
https://player.vimeo.com/video/122940958

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!!