I think this will be the last "finding out" post. The four items in the last two posts and the three items from today's post are by no means comprehensive of all that has gone on but it is at least an introduction. If you want to more, please don't be afraid to ask! Particularly if you are genuinely interested in learning more about Autism and how it affects me.
5. One of the two biggest areas that are affected by Autism in any autist's life is sensory processing. Due to our unique neurological setup we are hypersensitive to many sensory inputs and hypo-sensitive to others. Each person's sensory sensitivities is unique to them but we all have them, at least as far as I've seen. While it is possible for someone to experience a Sensory Processing Disorder without being autistic, there are far more instances of co-morbidity (experiencing both together). It's like depression and anxiety-yes you can have them separately but they are extremely likely to occur together.
For those things that we are hypo-sensitive to, sometimes sound, pain, illness, perhaps temperature or taste (again this depends on the individual!!) it's as if those things either don't exist or we have to exert higher amounts of attention to discern these inputs and variations in them. If we are really focused on something then we may temporarily be hypo-sensitive to a great number of external and internal stimuli depending on the amount of energy we are putting into the task at hand.
Far, far more common though is hypersensitivity. Being more sensitive to stimuli than normal. Sights, sounds, lights, illness, pain, temperatures, textures, tastes, humidity, movement, touch, volumes, colors, the list goes on. Many of these stimuli can combine all at the same time and either command a seemingly inordinate amount of our attention or alternately they can outright overwhelm us. If you're looking for the source of most meltdowns, look at the sensory environment! There's a reason why many of us prefer doing things at night, and it's not just because we are often prone to insomnia. It's the fact that the sensory input is drastically reduced during the night hours. Less light, fewer people, lower temperatures, fewer people, less traffic, did I mention fewer people? People are amazingly diverse sources of sights, sounds, touch, movement, volumes and more!
Confusing, right? That the things that some are hypo-sensitive to are the same things that others are hypersensitive to? There's a reason why many people say that "when you've met one person with autism you've met one person with autism".
Preceding my own diagnosis I had begun to be increasingly sensitive to external and internal stimuli. It's as if my nerve-endings, already only thinly covered and hypersensitive, have had their protective sheaths removed and cannot filter out anything anymore, or at least very little. For sights, lights and colors it is not uncommon for me to have to put on sunglasses or turn off the lights at home or the office. For movement I've always prefered sitting with my back against the wall, now it's uncommon for me to be comfortable anywhere without a wall or other shielding structure behind me (I absolutely hate getting startled! It is extremely uncomfortable!!). Again blocking out light helps, but otherwise I have to acknowledge and mentally categorize and predict movement before I can move my thoughts and attention elsewhere.
Getting sick is a whole new experience now. I am much more incapacitated by fever and illness than I ever used to be and have an immensely difficult time working through associated joint pain and headaches. I have become much more sensitive to temperature, the texture of my clothing and bedding, even the degree to which my pillow is fluffed. Migraines were already nightmares, now I cannot function at all with one. I can't even look at a cell phone or tv screen for more than a moment with a migraine, let alone drive.
Sound, though, is the absolute hardest to deal with. Pick up your tv remote and turn on a show. Turn up the volume. Turn it up again. One more time. Now turn on your computer and play some music. OK, now open an app on your phone with the app's music playing. Then start a conversation with a friend. Two friends. Try to have a work meeting through that noise. Add all of this to the middle of a mall, or movie theatre, or even a busy office environment. Have people running back and forth to the copier and the water cooler behind you and in front of you and to your left and right. You might start to get a sense of what it's like. It's constant for those of us sensitive to sound, it can be all that we are able to do to sit still with too much noise. Sometimes we can't even do that--I've had to start carrying headphones with me everywhere I go. Often if you can at least control how much sound comes in it drastically reduces the impact of other external stimuli. It really, really bugs me now when I forget to bring at least one set of my 3 pairs of headphones with me. Even if they aren't the noise-cancelling headphones I can use the others to block some noise or play music or a movie to cover other unpredictable or intrusive sounds with something I know well and don't have to worry about.
6. The other big thing, to some the biggest thing, that Autism impacts is social interactions and understanding. Things that society at large takes absolutely for granted-the ability to interact with other members of the human race without having to examine and interpret every word, tone, verbal and visual signal individually and as a whole lest one inadvertently commit one of thousands of unspoken social 'faux pas' that can be attributed to almost any situation. We autists are obsessive observers of humanity-we have to be in order to learn how everyone else does things in the event that we need to do them to. This is a big part of the reason that change affects us more than others, and in many instances so dramatically--it means having to learn a whole new set of rules or codes or actions to fit the new situation. I realize this is over-simplified, but I'm still new to trying to describe this type of thing. Here's one analogy that I've found useful so far though:
Imagine that you are driving down a street you've driven down many times before. You come to an intersection and as you approach you see that the light is green. What do you do? You proceed.
The light is yellow. What do you do? That depends, you either go through or slow down and prepare to stop, based on when the light turned yellow. Were you watching? Do you know when that was compared to your relative position and speed? What are the cars in front of and next to you doing?
The light is red. What do you do? Fortunately this one is easier. You stop.
Now imagine that the light turns purple. What do you do?
Oh crap. I've never seen a purple light before. What in the world does that mean? Is it broken? Is it new? What the heck am I supposed to do with this? Do I pull over until I can safely observe how other people handle this? Crap, I'm in the middle lane and there are cars on both sides. Aargh!
Now picture the light going pink. Or blue. Orange polka-dot, zebra stripe, leopard spot.
Social situations can be a lot like this--it again takes an enormous amount of energy and attention to be able to seem "normal" in society, in a culture that was not built to accomodate us. Truth be told we have to find ways to accommodate others as much as and more than they do us in order for us to seem like everyone else or help them do what they need to do on their end. Perhaps more on that another time. Suffice it to say that much like with sensory sensitivity, I am much more aware of my social struggles and just how much they impact absolutely every aspect of my life, not just at work.
7. All these difficulties aside, I will close with one of the bigger positive things in my life since diagnosis--I get fewer migraines! YAY!! So many of my migraines stemmed from my decades of sensory and social challenges. Now that I can go back and see how my autism has impacted everything I've said and done as well as every relationship I've ever had I am better able to see what I can and cannot have affected as a result. I can forgive myself for the things I could not have done any better at and I see the things that I need to continue to strive to improve on. I get why I'm me, the way I am, and I know that I'm actually a pretty awesome person! Does this mean I now have a lot of friends and am super popular? Of course not! There's a reason why someone once said of me that I'm the friendliest person without a friend that they've ever known. That being said, perhaps now I'll be able to form some more lasting friendships and be able to like myself more regardless of whatever else happens.
Next Post: Finding Me - Fear is the Enemy of Faith
Previous Post: Finding Me - Finding Out pt Two
Tuesday, August 9, 2016
Wednesday, August 3, 2016
Finding Me - Finding Out pt Two
On with the list of realizations and experiences!
3. Autism research, ie online searching in my case, is about 85-90% addressed to the parents of autistic children. Very little information is written for adults on the spectrum and only a handful of that is written by autistic individuals. Frustrating. One of the most prominent sources of information about autism is produced/sponsored by the organization Autism Speaks.
I really, really, really can't stand Autism Speaks. I cringe whenever I see articles listed as being on their website. I outright avoid it and have blocked it on facebook.
In fact, the vast majority of adults I've read that are autistic are absolutely against the organization, some vehemently so.
Autism Walks sponsored by Autism Speaks are actually protested against in person by autistics-the very people they claim to support.
April is an extremely difficult month for a lot of people on the autism spectrum--some even experience extreme meltdowns and anxiety at the sight of the puzzle piece, or banners saying "Light It Up Blue". While most of us don't have this strong a reaction, I understand it. This has nothing to do with more people being aware of autism, it has to do with the absolute fear-mongering poison produced by Autism Speaks that paints autism as an "epidemic", something like H1N1 or the Zika virus (the reason more of us are diagnosed is because the tests are finally both more accurate and being used!). It has to do with the fact that with the millions of donations received by Autism Speaks, only 4% goes to actually helping autistic people. A ton of their money goes into finding a "cure" and spreading the culture of fear and ableism surrounding public perception of autism, much of which they themselves perpetuated in the first place.
I will say this here and now, Autism is an effect of the way our brains are wired--no pill or shot or shock therapy or bleach enema will ever be able to rewire our neural anatomy!! Autism also does not end at childhood--most of us have figured one or two ways on how to function enough in society that we seem to 'disappear'. We still look odd and get things wrong sometimes (or often), but it is blamed on something else, like eccentricity or sheer rudeness. We're still here, folks! You'll really find that out if you're around when our support system fails or no longer meets our current/evolving needs.
Ok, off my soap box. For now.
4. It hurt a lot when I heard about the reactions of a few members of my family. I love each and every one of them so desperately--I am not afraid to say that I would be absolutely devastated if anything happened to any one of them, and would even at this moment do anything I could to support any of them no matter time of day! I know that growing up with me was very difficult for all of us, and that I was not really a nice sister to be around, but I have fought so hard over the last 14 years to change. I have left so much anger and pain and resentment behind me to be a better person, to be a better sister and daughter. Has it always worked?
Of course not. Family wounds aren't like scratches. You can't just put on some antibiotic and a bandaid and expect everything to heal cleanly. Family wounds hurt deep and leave scars, some of which are impossible to overcome without help. I still have one or two I'm working through, even after 14 years of working on them. I know for a fact that there are some still around that I caused/contributed to in my family members and it hurts very, very deeply in my heart to know that I have brought pain and anger to my family.
It hurt that some would not believe that I am autistic until I was officially diagnosed due to past experiences with me, not out of any fear of the possibility of a loved one being autistic.
It hurt to find out just how annoyed and sometimes angry some still get with me and I frequently don't even know when or why. How can I fix anything or try to prevent it if I don't even get the opportunity to know what it is I'm doing wrong? No, I don't want to dredge anything up, and I don't want to rock whatever equilibrium exists between us now, just munch on this and if you ever want to talk or ask questions you have my number :).
I am not suggesting that I am innocent in all of this either, not by any stretch. Yes autism makes it harder, but that doesn't mean that I can just stretch back and make everyone dance to my tune--I am still here on this earth to do my best! The Lord knows what I need to learn to get back to Him and He is the one who knew that there are lessons I will learn by being autistic that I could not learn otherwise, and I trust him! More on that in a future post. Suffice it to say that I own what I do and have done wrong, and that I will do everything in my power to make amends, because I love you!
One thing I will not own though is that which lies between others and the Lord, those thoughts and words and actions that are not in tune with the gospel that come from continued anger and resentment. The ball is not in my court on that one, though I will do anything within my power to help them make the basket.
I will say though that I love the reaction I got from Mom, my brothers and my sister-in-law. Instant acceptance from all four and support in so many different ways from them and from my Dad. The growing appreciation and acceptance from at least one or two sisters has also been very warmly received, and my relationship with my autistic niece has never been better. Thanks, you guys rock!
Next Post: Finding Me - Finding Out pt Three
Last Post: Finding Me - Finding Out pt One
3. Autism research, ie online searching in my case, is about 85-90% addressed to the parents of autistic children. Very little information is written for adults on the spectrum and only a handful of that is written by autistic individuals. Frustrating. One of the most prominent sources of information about autism is produced/sponsored by the organization Autism Speaks.
I really, really, really can't stand Autism Speaks. I cringe whenever I see articles listed as being on their website. I outright avoid it and have blocked it on facebook.
In fact, the vast majority of adults I've read that are autistic are absolutely against the organization, some vehemently so.
Autism Walks sponsored by Autism Speaks are actually protested against in person by autistics-the very people they claim to support.
April is an extremely difficult month for a lot of people on the autism spectrum--some even experience extreme meltdowns and anxiety at the sight of the puzzle piece, or banners saying "Light It Up Blue". While most of us don't have this strong a reaction, I understand it. This has nothing to do with more people being aware of autism, it has to do with the absolute fear-mongering poison produced by Autism Speaks that paints autism as an "epidemic", something like H1N1 or the Zika virus (the reason more of us are diagnosed is because the tests are finally both more accurate and being used!). It has to do with the fact that with the millions of donations received by Autism Speaks, only 4% goes to actually helping autistic people. A ton of their money goes into finding a "cure" and spreading the culture of fear and ableism surrounding public perception of autism, much of which they themselves perpetuated in the first place.
I will say this here and now, Autism is an effect of the way our brains are wired--no pill or shot or shock therapy or bleach enema will ever be able to rewire our neural anatomy!! Autism also does not end at childhood--most of us have figured one or two ways on how to function enough in society that we seem to 'disappear'. We still look odd and get things wrong sometimes (or often), but it is blamed on something else, like eccentricity or sheer rudeness. We're still here, folks! You'll really find that out if you're around when our support system fails or no longer meets our current/evolving needs.
Ok, off my soap box. For now.
4. It hurt a lot when I heard about the reactions of a few members of my family. I love each and every one of them so desperately--I am not afraid to say that I would be absolutely devastated if anything happened to any one of them, and would even at this moment do anything I could to support any of them no matter time of day! I know that growing up with me was very difficult for all of us, and that I was not really a nice sister to be around, but I have fought so hard over the last 14 years to change. I have left so much anger and pain and resentment behind me to be a better person, to be a better sister and daughter. Has it always worked?
Of course not. Family wounds aren't like scratches. You can't just put on some antibiotic and a bandaid and expect everything to heal cleanly. Family wounds hurt deep and leave scars, some of which are impossible to overcome without help. I still have one or two I'm working through, even after 14 years of working on them. I know for a fact that there are some still around that I caused/contributed to in my family members and it hurts very, very deeply in my heart to know that I have brought pain and anger to my family.
It hurt that some would not believe that I am autistic until I was officially diagnosed due to past experiences with me, not out of any fear of the possibility of a loved one being autistic.
It hurt to find out just how annoyed and sometimes angry some still get with me and I frequently don't even know when or why. How can I fix anything or try to prevent it if I don't even get the opportunity to know what it is I'm doing wrong? No, I don't want to dredge anything up, and I don't want to rock whatever equilibrium exists between us now, just munch on this and if you ever want to talk or ask questions you have my number :).
I am not suggesting that I am innocent in all of this either, not by any stretch. Yes autism makes it harder, but that doesn't mean that I can just stretch back and make everyone dance to my tune--I am still here on this earth to do my best! The Lord knows what I need to learn to get back to Him and He is the one who knew that there are lessons I will learn by being autistic that I could not learn otherwise, and I trust him! More on that in a future post. Suffice it to say that I own what I do and have done wrong, and that I will do everything in my power to make amends, because I love you!
One thing I will not own though is that which lies between others and the Lord, those thoughts and words and actions that are not in tune with the gospel that come from continued anger and resentment. The ball is not in my court on that one, though I will do anything within my power to help them make the basket.
I will say though that I love the reaction I got from Mom, my brothers and my sister-in-law. Instant acceptance from all four and support in so many different ways from them and from my Dad. The growing appreciation and acceptance from at least one or two sisters has also been very warmly received, and my relationship with my autistic niece has never been better. Thanks, you guys rock!
Next Post: Finding Me - Finding Out pt Three
Last Post: Finding Me - Finding Out pt One
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