Sunday, August 23, 2015

"Accessories" To Autism

First I would like to point you in the direction of this link. It is a short list of other disorders that often pair with autism. Please check it out!

This is something that I thought about today and thought maybe it hasn't really been written about (though I don't know, maybe it has). 

Here's the thing. You might know this one person who you're sure has OCD. In fact, maybe they are diagnosed with it. The link itself was pretty brief on OCD, but it did say that 30% of people with OCD also have ASD. Interesting. I wonder what those numbers would look like if they said how mnay % of people with autism have OCD. 

The thing is, I don't consider autism a disease. Autism is a difference. Just like one person might be able to do advanced calculus and another can read and speak in several different languages. Our brains are all different. Autism is just one "label" of a difference.

So, what my thinking is that because of the differences in autistic people, we are perhaps more prone to these other conditions. For me, I was also 'diagnosed' with generalized anxiety and recurrent depression and OCD, but none of them are stand alone conditions, they are, as the tester put it, "accessories" to my autism.

"Accessories" makes me laugh. Makes me feel like I'm all dressed up for a party. You know, one by myself, alone, at home or something. LOL

But in all seriousness, that is the truth. I have autism. That helps me understand who I am, how I think, why my brain seems to work differently than so many others, and the struggles I have, things like that. However, it also helps me understand why I am prone to anxiety, depression, OCD, or other things that I just might not be showing right now. 

I think that often there is a lot of misdiagnosis with people who have undiagnosed autism. I think  this is especially true in adults, and even more so with women. Obviously, adults have had their whole lives to "practice" or learn by trial and error how to manage certain weaknesses or whatever. And women seem even more prone to this, because we tend to mimic other people in the social situation around us, or whatever. This is why many adults are not diagnosed as adults. Doctors are just not looking for this. And most adults would not have been diagnosed as children because it just wasn't done back then. It was hardly something that was recognized unless there were severe difficulties. The more "socially acceptable/normal" looking autistics were missed, and I feel they still are. 

Anyway, so these undiagnosed adults end up at the doctor with depression or anxiety (or pick your favorite from the list), and they are often treated FOR depression with drugs/medication. I'm sure some of those people also get therapy or counseling to help their struggle. Sometimes this alone may work, but for some people it can make things worse. Drugs always made me feel worse, more anxious than ever. 

However, I have talked before about how diagnosis is the cure. Knowing something like this about yourself is very helpful because you can put things in your life into perspective. 

Depression can be a scary thing, because you don't know how low it will take you, or for how long. Though it is said that many people with autism will feel as if there is no end to their struggle, for me knowing I have autism has really helped me to understand that because it is just an "accessory" to my autism, I will fall into it now and then, but I will always end up back out again. I make sure to take care of myself enough to get help if it lasts for too long, but I know that it's just a part of the fact that i struggle with some parts of who autism makes me in relation to the world. And that's ok.

I honestly can't think of anywhere that this kind of thing is more brilliantly revealed than in Sheldon. I've written on Sheldon before, here, here and here. What I would like to say today, is that they didn't create Sheldon to "be" anything specific. However, it isn't hard to see that he isn't your "normal" character. You start picking out different characteristics about him that points to certain diagnosis. There are a pretty good list of things you could come up with. Here is a wiki link and another wiki that I think covers a good bit of Sheldon, and here is a good link suggesting autism spectrum. Here is a link talking about a few different disorders relating to Sheldon's behaviors. 

The point is, the character was not created to "be" anything specific. But his behaviors and whatnot fit in to quite a few. He is just like many adults in the world today, undiagnosed and living their lives. They have difficulties and struggles and other conditions may present themselves stronger than others, like OCD or personality disorder. But we can't really isolate those things on their own if they are really a part of something else. 

So, like I said, I have generalized anxiety, but it is a part of my autism. It doesn't stand alone. It is a part of the whole picture. If we didn't know the whole picture, I don't think we would be able to treat things as effectively. 

Also, it is important to know that just because someone shows this disorder or that disorder, it doesn't mean they aren't autistic, just like having them doesn't mean they are autistic either. It is important to listen to someone who feels they fit into autism, because if they feel they do, it is likely they are right. THEY know themselves. THEY know the daily struggles and inner thinking and stuff that makes them who they are, much more than anyone else ever will. Telling someone who thinks they have autism that they can't possibly is very discouraging and hurtful. We have to believe people and listen to what they have to say. I can't think of any reason that someone would say they have a difference like autism without having a darn good reason for it. You might not know that part of them, you might not know what is going on in their heads or daily life. You don't know what it's like when they are alone or at the end of the day when they are at home. You don't know. So you need to keep your assumptions and stop thinking that it would make someone feel better to discourage them from thinking they have autism. It doesn't make them feel better, it makes them feel worse. I know this first hand.

Anyway. I hope this post isn't too long or too scattered for you tonight. I had to stop and start. HA! My head is all over the place today too so I felt like I rambled and got random. 

Tuesday, August 18, 2015

What'd You Say?

I need to google some more. Though I did get a message from my E-friend, Aspie Writer, and I guess I'm not alone.

I can't hear. But I can, really. I can hear so much. I don't think I would say I have super sensitive hearing, but I hear everything even when I'm asleep (at least it feels like it!). 

I hear everything, but nothing. 

I wonder what the science is on hearing and autism. I know I have read things about it, but not lately, so I'm not remembering what they all say. But I think that basically, we can't filter out which is important to hear and which is not. 

A huge example, since we spend so much time driving - we live in the middle of nowhere - often B tries to talk to me when we are driving somewhere. I don't like AC, and it died again anyway, so windows open. Right next to my ear. BBBBBLLLLLTTTTHHHH.

He tries to talk and I just can't hear him. My brain can't filter out the blowing air noise so I can hear him talk. I think that's how it goes.

OR, even if I'm thinking/stewing/ruminating about something, I'll be having inner conversations with myself or imaginary versions of people, and I can't seem to hear anyone talk. 

My husband has very sensitive hearing. We 'joke' that he could hear a mouse farting on the fourty, but it's not much of a joke, he probably could. My son has had sensitivities to sound since he was born, LOVING trains, but always covering his ears, or freaking out a little when they sneak up on him unexpectedly. I, on the other hand, might not hear someone talking to me right behind me. 

I wonder if somehow I ended up overcompensating and blocking out EVERYTHING because I couldn't figure out which thing to listen to. I know that I was pretty good at that in school, because I don't remember hearing much crap in class. Maybe I got tired of hearing them talk about me so I just learned to block it out?

I remember as a kid that one of the biggest thing that made my dad mad was not hearing him. We would get in so much trouble, when honestly, I had literally not hear him speak at all. No use explaining that to him, he was just too mad. Now I get it. I do the same stupid thing. I hate it when the kids don't hear me. I hate it when they just don't hear me! I really really try to remember some "Mark Gungor" style rules, get into the same zip code! I've gotten better (!!!) to where at least if I can't go to him, I will at least wait until I call him to me before I give him any kind of relevant information or instructions. But I still don't like not being heard.

Incidentally, I don't like being "heard", where people don't understand what I'm saying either, but I digress.

I wonder how other people on the spectrum deal with hearing and sound. Any chance an ear doc helps at all? I feel like if I go get a test, I'm going to pass with flying colors. I'm sure I could hear beeping with sound blocking headphones in a silent booth. That's not when I have trouble. Though, when do I get to sit in a silent booth anyway? 

Let me know if you have any thoughts on this in the comments!

Sunday, August 16, 2015

Completely Overwhelmed, Regression and Exhaustion

I wonder if I'm the only one who deals with this. I'm going to say that I probably am not. I don't know how much out there is written about this particular subject either. I know it was new to me when I read this article recently.

I love the way that article lays it out and describes it using a power grid as an example. 

What I would like to mention is what it feels like, to me, right now, dealing with this particular situation.

I feel frustrated. I know I'm capable of dealing with dirty dishes/house, laundry, or a sick kid, or going to a part time job. I know I can do these things because I have done them in the past. So there is a lot of guilt and self shaming because I should be able to still handle this stuff, shouldn't I? So I blame myself for not being able to handle it, or for disappointing people when I cant function or when I'm not able to do something I said I would do, or whatever. And I feel like I'm letting down my husband and my kids because then they have to start filling in doing things I would normally have handled. Or, maybe they don't get played with as much during that time because I just don't have the energy or ability to handle doing anything except basic living functions, making sure I and they are fed and clean and protected and whatnot.

The hardest part of living daily in this autistic regressive state is that if ONE little thing happens on top of it, its like the straw that breaks the camels back. The "world" falls down because I just can't carry any more than I already am carrying. So, all the kids need to stay healthy and not get hurt or sick. The money still has to come in in just the right amount so the bills get paid. I can't burn the food. Sometimes, I can't even comprehend going to work or town. Or even outside.

Every time life throws you a curveball, you might readjust and regroup and be fine. For me, though, I have to totally rewire my brain or something. Instead of the speed of DSL internet upgrading from Windows 7 to 8, I have dial up doing the job. It takes longer, and in the meantime, nothing else will operate either. Get it? 

Anyway, I just get tired of "one more thing" happening every time I think I'm getting a break. And I'm tired of things overwhelming me so much. And I'm tired of feeling guilty that I can't be counted on because if one little thing happens, my brain is toast. There's nothing I can do to change any of this, but I still feel terrible for failing myself and others. 

Friday, August 14, 2015

Denying Autism & Autism Speaks

I feel I should explain where I'm coming from here, but the title should be pretty self-explanitory. There are people out there who simply deny autism, whether in themselves, their children, their friends, their friends' children, whatever. It isn't so much that they deny its existance, but that they can't believe ____ has autism, despite the signs that might be obvious to the parent, or a doctor, or someone else with autism, or whatever.

I've spoken on this before (I think) that many people did not believe I had autism. They believed I was 'too social' or something, or that because I could socialize, that I couldn't have autism. There were people who thought my son was just a typical boy or something, or that somehow I didn't do parenting right or something. Perhaps they never stated that outright, but it seemed or felt implied.

What I really would like to focus on though, is the fact that denying autism is harmful. It is harmful to the person/child with autism, it is harmful to the parent or friend dealing with it, it is harmful to the family dealing with autism, it is harmful. 

I believe that a huge part of this denial comes from the influence of groups like "Autism Speaks". The reason I believe that is that Autism Speaks is a group that likens autism to something we should be scared of, something that is destroying kids and families and people, and something that needs to be eradicated, like polio or TB or some other disease.

The fact is, autism never killed anyone like a disease would. Autism is just autism. Autism is just a brain difference, a different form of processing system, like someone may have Windows 10, but someone else might have Vista, or a variety of Apple or something. We are not all intended or able to run on Windows 10, and that should be ok. But to groups like Autism Speaks, it is NOT ok, and it must be cured, and upgraded in order to have validity and function in the world.

The mentality behind Autism Speaks is to be able to identify autism as early as the womb, and therefore offer parents a "choice", like is the case in Down's Syndrome. There are still people in the world who will abort a pregnancy based on a genetic test claiming there is a disorder, even though there are false positives and they might be wrong, and the child may have been "typical". 

So, basically, Autism Speaks is saying, through their words and actions, that autistic people have no value to society, they are a burden on society and families, and we should eradicate them through cures or any means possible.

If you know me personally, is that really a choice you want to be forced to make? 

If your child is like me, is that really such a bad thing? 

If it is a possibility that your child might have autism, or your friends' children, or the child of a family member, would you really rather not have that child exist at all?

Would you rather ignore and reject any connection or characteristics to autism, instead of getting the early intervention that many feel is life changing?

We did not get early intervention here. I was 29, diagnosed as an adult, after years of self diagnosis. My son was also older than would be considered "early intervention", but even in hindsight we knew ahead of time that this was going to be an issue, and we didn't feel that it was necessary at previous points to seek for help, but when it became unmanageable in certain ways, that was when we needed the diagnosis to help us to be able to find appropriate help for the issues he is having specifically. Would I have done earlier interventions? Yes. I think I would have, knowing what I know now. It might have been easier to get help ahead of the problems we are having, that would have made the past 2-3 years a lot less difficult and stressful. I think I wished we had the knowledge all along so that we could have met the struggles head on armed with the tools and resources to avoid the huge fights and meltdowns and struggles. We might be playing a little catch up right now, but I'm still glad we are doing all this ahead of the teenage years and hormones! So we are still intervening early.

The point I'm trying to make is that we need to stop fearing autism. Autism is just autism. You would never stop loving your child, what difference does it make if they have autism, and both you and the child need some help to make it through some of life's complex situations? Really, what difference does it make? Are you going to stop loving the child or something just because autism might be a huge part of who they are? It really sounds like nonsense when I say that. But with the mentality that autism is something to be feared and avoided at all costs, that is what we are saying. We are saying that if a child has autism, that all of a sudden they are different than they have been, even when all along that IS what they have been. We are saying that we are glad that it's "someone else's problem" and that we would never want to have to deal with that, when maybe you ARE dealing with it. Is a diagnosis of autism really going to change the fact that your child is who he/she is? 

No, it wont change anything! But it will help open a world of understanding for you that you never had before. It will open a huge amount of resources and people who can help you understand it from a first person viewpoint. And that's another reason Autism Speaks cannot be trusted. They have never had any person with autism on their board. They have not asked for, accepted, or listened to the voices of those of us with autism. They have rejected one such person who tried to be involved in their organization in such a way that he quit and could not work with them anymore. Google it. 

The saddest part is that the mentality that Autism Speaks has spread is prevalent and everywhere, and most people don't know it has originated in a group that has no representation with autistic people. I have yet to find or hear of one single autistic person who supports or agrees with Autism Speaks. Yet people continue to believe that autism is one of the worst things that could happen to a child, even more so than cancer or death, to the point where parents have been led to think about killing their autistic child, and some have actually done it. Death was preferrable to a living child who has autism. Imagine that. Imagine if my parents had done that to me, or I to my child. Would you really drop your kid off a bridge because they have autism? Could you imagine the terror in the heart of that child? 

This is the mentality Autism Speaks, and groups like it, are spreading. If you have a child with struggles that keeps pointing toward autism, stop fearing it! Stop saying "that's what happens to other peoples kids". Stop saying "my kid is too ____ to have autism". Stop saying "that could be the worst thing to happen to my child". Think about what you are saying about those of us who do have autism when you say or think those things. Think about how you are internally or even externally stigmatizing us. And think about how autism will eventually catch up with you one way or the other. It certainly does not go away. Someone along the line will see it, even if it is the child themselves after they have grown up and end up searching for answers to why their life is what it is. Wouldn't you rather your child know themselves all along then to struggle through life feeling so isolated and different and not know why? Wouldn't you rather the people around them know that they have certain differences that make them a certain way, instead of just thinking they are a brat or insensitive or weird or something? 

Don't deny autism. Don't deny it for me, for my son, or for any other child or adult with autism, even if that includes your own.

Friday, August 7, 2015

Autism, Homeschooling and Socialization

I can't even begin to tell you how complicated socializing is with autism. 

I don't know where to start. 

For the most part, I think every single person on the planet WANTS to connect with others. Some try harder than others. Some need more than others. But I think we are all intended to be a part of some kind of community, whether large or small. 

I am pretty much on the introverted side, and I prefer time alone to time with people, but I still desire to have friends and talk and stuff, sometimes more than other times.

From what I can guess so far, my B is the opposite. He wants to talk to people all the time. He could literally talk all day long if you'd let him. He would talk to anyone, anywhere. Maybe more so if I don't know the person, it seems like! I said hello to someone in the store today and he clammed up, where a complete stranger he would have initiated the conversation and I would have been begging him to stop so we could move on. 

We're homeschooling, and more often than I would have expected, I get "that question" - what about socialization?

Seriously. I'm even more surprised when the person asking that question knew me when I was in school. I never quite know what to say, or the right thing to say, but I usually end up saying the truth: he has friends who live nearby, and family, and we do this program or that group. It never sounds adequate in my mind, and I'm left wishing that I had said more, but I don't really need or want to get into long philosophical conversations either. Because really, there we get into the spot where I'm seemingly trying to convince them of something they don't believe or agree with. 

The fact is, we have autism. There is no amount of socialization on the planet that will help that. Those same things will always be there, no matter if he's homeschooled or public schooled. Having gone through public school myself, I KNOW what kind of socialization goes on there. It's "Lord of the Flies" the real world. I'm not even kidding. It's live or die, fit in or die, join the crowd or die. 

Like everything there are kids that make it through unscarred. I was not one of those kids, and to keep holding onto this belief that the ONLY way for a child to learn socialization is to go to school is very harmful. And really, what is more important anyway? Learning academics and life skills, or learning how to avoid being tortured by fitting in? Learning how to balance a checkbook (and the math skills that come with that) or learning how to reject your family's values in order to be accepted by a bunch of kids who won't even be in your social circle anymore after you graduate (for the most part)? 

We're focusing in the wrong direction.

I also get frustrated, because this is the ONLY thing that we think kids have to learn by being with other inexperienced, immature people. 

Do 6th graders go into the 10th grade classroom and teach them algebra (a class they themselves have not had yet)?

When you want to hire a mechanic, do you just call the kid down the street who's favorite thing is cars, or do you call a mechanic who trained both academically and with other more experienced mechanics to learn their job? Seriously?

What makes us think that putting kids together in a building teaches any form of good social skills? They are ALL lacking those skills. Who isn't? ADULTS. Adults have had years of practice, they've gone through adolescence and growing, and have their fully matured brain to help them logic things out. Kids don't have that. To expect them to learn anything by plopping them together is really not sensible is it? Wouldn't they be better off learning from adults? Especially adults who they have a relationship with?

Sure, teachers can do this. But is it effective to have 30+ students per teacher? And that's not even counting the majority of students who never connect with any of their teachers at all! Some kids just will not find a staff member whom they trust enough to glean any skills from. It is not working - look at the kids in this country! What we are doing is not working for the majority of kids. It didn't work for me. It wouldn't work for B either. 

I'm just really weary of hearing about socialization. It's like someone said "we have to have public school so kids get socialized", meanwhile, the kids were plenty socialized from having neighbors and family everywhere all the time, they were learning from their parents and their uncles and their grandparents and yes, the other kids in their family's social circle, under supervision of the same loving family members and parents that are guiding these kids, because they love them and want whats best for them. I said some kids will never connect with a teacher, but even more so, some teachers will never connect with their students either! It goes both ways. 

Autism is a different world altogether. I may have been more social as a child, I don't know. But what I do know is that the way I was treated in school, I quickly learned that I was not accepted the way I was, and I quickly learned to be afraid to talk. I quickly learned that talking to my peers was not safe. I want more for my kid than that. I know he's annoying when he goes on and on. I want him to learn how to manage that through the safety and love of our family, not because he was tortured and teased by his peers. What good would it do any of us to send him to a place full of people he will never really know, full of sensory overload and overwhelm, to be tortured socially? That's not socialization. That's the opposite of that. 

You may want to play the devil's advocate or something right now and say that I don't KNOW that it would happen. But seriously, he's not much different than his mama. The kids in public school are related to or the kids of the ones who tortured me! We were involved in ECFE for a few years and even then I saw my son playing alone, and everyone else just passing him by. Interactions were passionate and stressful for him. Just a couple hours of that kind of interaction and he would lose it the rest of the day. I don't want my kid to have to hold things in all day, and come home and explode on this family because he's been just barely surviving all day. 

I know what autism is. I know what autism means. I know what socialization does to kids with autism. I know what socialization does to kids like me. I don't want him to have to spend 5-10 years of his life trying to readjust to the idea that people might actually like him because it isn't high school anymore. (I've been out of school for 14 years now and I'm still surprised when people like me.)

Who should have to live like that?

Just my thoughts and stuff pouring out today. I don't think public school is a nightmare for everyone, and that I know even when you don't want to send them to public school, you sometimes feel too overwhelmed, like you don't have a choice. I just want to say, some kids do fine. I just know I want something different, something more, something better, for mine. I want things to go in a different direction. There are so many other reasons I favor homeschool over public school and even if my kid never learns to "socialize", those things are FAR more important than that anyway. 

Tuesday, August 4, 2015

Autistic Regression

Recently, I've been having a hard time. I may have said that here before. One particularly difficult evening I was talking to/unloading on a trustworthy friend, and this link came into my facebook feed.

And once again in my journey, I was blown away.

This describes exactly what has been happening to me. Spot on. 

I'm not even waking up rested and ready for another day because I am working too far above my capabilities every moment of every day. No amount of alone time has worked to relieve my complete overwhelmed state. My bucket is sitting under a firehose on full blast, and it's constantly overflowing. I don't have any air. I'm drowning.

There are just so many things in the air right now. I'm stressed and overwhelmed and a surprise pregnancy of course has put this all over the top. 

It's not like a plate of pancakes, where you add one and it's just one too many. A surprise pregnancy is like a MILLION things too many, all at once. 

I know, "intellectually", that God will give me the strength when I need it, and I don't need it right now. There's also no way to know if I have it until I need to use it, and of course, there's no way I can test that until it's time. 

Unexpected things always throw me for a loop, and I hear that is not uncommon with autism. It can and does cause considerable stress, anxiety and frustration. We have to regroup, redirect ourselves, reorient our lives. Depending on the thing, of course, that could mean taking a 5 minute break and breath and just go for it (like an interruption or change at work). This? This is no 5 minute break thing. 

I'm 12 weeks along. Almost 13. Thats 7-8 weeks to "get used to it". And it hasn't happened yet. I don't know when it will, but I'm hoping it will be sometime before February. 

I feel pretty confident that the counseling program I'm going to be doing will help. I was really relieved when they came here for 'intake', that they know what I'm talking about, and what it's like specifically to be going through things with autism. See, you might think I act or look so "normal", but I'm completely and totally autistic. Just because I can pretend for some short period of time in front of you doesn't mean that I'm normal. I still have all the same struggles that a child with autism has, I've just had 32 years of practice to hide, ignore, avoid, and otherwise try to avoid losing it. I can manage it for a period of time. But it's still there, using up spoons, right under the surface.

Anyway, I'd like to write a post about counseling, and I will eventually. But for now, I just wanted to share this link because it's insanely accurate and exactly what I needed. I have felt a little relieved since I read it, at least it's ok, normal, and I'm not losing my mind, or sinking in depression. This is just normal, for me. This is just something I deal with now and then, on and off, throughout my whole life. I'm going to have tough times, and I'm going to "lose skills" during those times. I'm going to lose my ability to deal with things, and this is just what it is. It sucks. It's super hard. It's really annoying. It's really .... just... I don't know. You just have no idea what people with autism go through unless you're autistic. (Which is the major factor in why Autism Speaks SUCKS.)

Anyway, let me know what you think of this link!