Many who know me know that about a year and a half ago my life was spiraling rapidly out of my control. Its been suspected that I've been dealing with depression for over a decade but I tipped down that particular slope pretty hard last year with the addition of bouts of anxiety that had begun about a year and a half before that (give or take). I tried so hard, oh so very very hard, to swing back up but the track was gone. It hadn't moved, I hadn't changed my own direction, it had completely fallen apart. Disintegrated. I had an idea of what direction I should be heading but was not able to get there on my own. My father tried his absolute best, and I tried moving in faith, but I kept hitting up against barrier after barrier.
By May I knew I needed some serious outside help. I talked to my bishop and was able to meet with a therapist through LDS Family Services. I am so grateful I had that opportunity! It helped me hold on in ways I didn't know I could anymore, just knowing that in a few days I'd have my next appointment. My therapist went above and beyond too, staying longer and giving me the time I needed to be able to talk. One of the things she jumped on right away was that work is a big source of stress for me and she strongly recommended I look for a new job. She even put me in touch with incredible resources to get a baseline and start looking. I even started considering going back to school for a Bachelor's degree (I have an Associates as a paralegal).
It was in this timeframe though that my brain really started coming unhinged. Remember my earlier post where I talked about how my brain never stops? My trains of thought are frequent, rapid and never-ending and they started looping like mad on these topics. I couldn't even begin to find the brakes let alone pull them, or at least get onto a different track. In my moment of greatest desperation I did what I have done in the past--I called my dad and asked for a Priesthood Blessing. I find it a great source of comfort that my father is a worthy Melchizedek Priesthood holder, and have often turned to him and to my Heavenly Father in times of need, and I felt in urgent need at that time.
I was in Springville, UT at that particular moment and called dad up to ask if he'd be available in about 45 minutes (the time it would take to get to his house). When he responded affirmatively I requested the blessing and we talked for a moment. After getting off the phone with him, while proceeding north towards Salt Lake County, I offered one of the most fervent, heartfelt, sincere prayers with real intent I've ever prayed. I spoke to the Lord of my confusion, my absolute desire to do His will without any idea of what it was. I thanked Him for all of my options but prayed so hard to know what the right one was. Please, Lord, just let me know which way to go and I will! Remembering, though, that all things are according to the Lord's will. He knows exactly who I am and what I need to do to return to Him, so let all things be according to His infinite knowledge and will.
.
..
...
The answer wasn't what I expected, but it was absolutely the one that I needed. Still need, truth be told. To paraphrase, I was told to be patient in my current circumstances. To remain where I'm at, in other words, and the Lord will let me know where to go when it's time to change. He reminded me to consider the lilies, how he still cares for them so much more will He care for me. There were other things contained in that blessing, but this works for now. I find I am grateful to this day that the response He gave was so clear, and still find comfort in that tender mercy.
I knew peace in that moment. I didn't need to run around and find new situations to learn from but rather continue learning what the Lord would have be learn in this moment, in this place and time.
A few months after that I began to wonder, to worry that I'd missed something. The Lord reminded me very clearly that fear and anxiety are the enemy of faith. They rob faith, steal it away until fear is all that is left. Fear, doubt, discouragement, hopelessness. Those are not His domain, but that of another. I was calmed and pressed forward to the best of my abilities.
A few months after that I was reminded again. The Lord would make it clear when it was time for a change. I was still where He intended me to be to learn what I needed to learn. Need to learn.
Tonight I confess I began to get, not worried, but rather a little impatient. I remembered those past blessings and promptings but began with a bit of a prayer of frustration. Lord, I have faith that you'll let me know what direction to go when it's time for a change, but could you please let me know when that will be? It's so hard when I keep screwing up. When will I be approaching that intersection? How much farther until the turn signal?
I went on like that for a few minutes before it came to me. I was, in essence, saying "Lord, I trust in your timetable, but not really. Just let me take a peek at it, ok? Just to make sure?".
I chuckled a bit at myself in that moment. He let me know exactly what I was doing, and gave me the opportunity to repent. I am extremely grateful for that as well.
I will trust in the Lord and His timing.
"There is no fear in love; but perfect love casteth out fear: because fear hath torment. He that feareth is not made perfect in love.
"We love him, because he first loved us."
1 John 4:18-19
He that feareth is not made perfect in love. It is in Christ's perfect love that we are perfected. May I ever so strive for His love, and reach to Him, rather than let fear tear me apart. I choose to love Him--after all, He already loved me first!
Monday, October 31, 2016
Tuesday, August 9, 2016
Finding Me - Finding Out pt Three
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
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
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
Sunday, July 31, 2016
Finding Me - Finding Out pt One
It's taken me over a month to start this post. In so many ways I'm still finding out about being autistic, making this by far the most mentally and emotionally complex post I've ever written.
When my father posed Mom's idea about me being autistic I initially gave it only a cursory thought or two. I could see what they meant about me having 'autistic tendencies', but thought they were largely environmental, a bi-product of growing up in a home with a father and two brothers on the spectrum. I didn't really dedicate much thought to it in the moment. Or the next moment. Or the one after that.
The thing was, though, that the moments persisted through the night and into the next day. As each moment passed I found myself thinking about it more and more. It started making some sense, then too much sense, of things that had been hard for me my entire life. Of past moments that had been awkward or inexplicably tough or painful. I was sitting in my bedroom most of that evening, a quiet haven, as the sands of thought became increasingly active, moving slowly at first and then swirling increasingly fast all around my mind. I did not know peace until I knelt in prayer and asked. Asked if I was autistic. The answer, that confirmation that yes, I am autistic, was pure and plain and precious, as personal revelation often is. That moment was simple and sweet, for which I am eternally grateful. Had it come in unsurety or chaos it would have fundamentally altered all that which came thereafter.
Another thing for which I am immensely grateful is that I was on vacation at the time. I had taken two weeks off of work for the sole purpose of, well, doing nothing. I planned no activities, no trips, just did whatever I wanted to in the moment I wanted to do it. This amounted largely to a whole lot of staying at home doing virtually nothing, as I am not really the adventurous type. What it did turn into is the chance to think a lot. By a lot I mean, well, incessantly. One thing about us 'neurodiverse' types, our brains don't really stop. Ever. We are always processing multiple things, both consciously and subconsciously, at all times. Our trains of thought run rapidly along multiple tracks, usually to purpose but other times in circles and squiggles so increasingly frenetic that our brains ultimately can't handle the pressure and react, ie meltdowns and shutdowns. These moments are triggered internally and externally, though without any external pressure the trains usually don't derail by themselves. One example though of a subconscious train of thought would be the idea of writing this post--it has been running nonstop in my brain ever since I hit the "publish" button for the last one, and it has taken this long for the train to pull into this destination.
Anyway, to fully grasp what it has been like to find out I'm autistic would take as long as the experience has been (stretching into 10 months), and frankly I don't have the time to write down every moment, and I know noone else would have the inclination to go through that whole rigmarole. I'll instead focus on a few realizations and experiences I've had since.
1. I remember Mom one time telling me to stop apologizing so much. I used to apologize for so many things, so many moments when something was awkward or weird or painful or I was getting yelled at and didn't know why, or just to appease someone who thought something was my fault even though I had no idea how or what they were talking about. I would apologize for something I said, for something that happened because I was angry, for something that happened because I was sad, even the odd moments when something would happen because I was happy. I got to the point where to me it felt like I was having to apologize for existing, for being such an annoyance/struggle/burden for everyone around me. This is one area where I really related to Dory--if you notice at the beginning of the movie in particular you'll find that she's apologizing for something easily every 3 to 5 minutes due to her own challenges, and boy do I relate!!
I have spent years trying not to apologize so much. Mom might not even remember that conversation as it happened well over a decade ago. It had a pretty profound impact on me though, and I spent years trying not to apologize so much. It got a bit easier once I was out of high school. I learned so many situations just to stay out of so that I wouldn't get into trouble for something, or so that I wouldn't screw up. Now I try to say 'thank you' -- instead of focusing on what I'm not doing well, I thank others for their assistance/patience/time, etc. I still find myself avoiding a lot of those situations though.
2. Reading. Oh my, reading. I used to be an absolutely voracious reader. I consumed books for breakfast, second breakfast, elevensies, luncheon, afternoon snack, dinner, supper, dessert. Practically as soon as I learned how to read I fell in love with the library, and by the time I was in junior high I had taught myself not only to walk while reading (extremely easy) but to ride my bike while reading, not wanting to wait even that five to ten minute ride home from the library to dive into the books I had checked out. I even read by the light of my alarm clock at night, since until I was 16 I shared a room with other siblings and couldn't keep the light on.
Boxcar Children
Baby-Sitters Club
Sweet Valley Series
My Brother the Wind
Anne of Green Gables
Madeline L'Engle
Tamora Pierce
Anne McCaffrey
Robin McKinley
Patricia McKillip
JRR Tolkien
Orson Scott Card
Long before the Harry Potter series was ever released I had easily read hundreds of books and authors. I began buying books instead of borrowing them, eventually reaching a point where it became cheaper to do so as I would forget to return the books and would have to pay even more in fines that the book cost itself. I amassed a huge library. I estimate that at its height my collection was comprised of over 500 books. They just made so much more sense than real life! They let me lose myself in their pages and plotlines, and I was able to fully experience emotion in a way that I never could in my own story, in a way that was so personal and yet one step removed. The characters never disappointed me, the stories never got angry at me, I never had to do anything other than read to be immediately immersed in a world where I personally could do nothing wrong. And such rich worlds!! I learned from these books as well, including what it means to be a good leader and what it means to take accountability for one's actions. So much of what I do and know now is influenced by what I read, and I am grateful I was drawn to books of heroism and gallantry instead of death and destruction ;).
At the time I would have said I just loved reading, loved the books for themselves and nothing else mattered. Only now that I am coming to terms with myself, knowing who I am and why I do the things I do, do I no longer need, and yes I absolutely mean need, books the way I once did. That being said I absolutely still love the works of so many authors, especially Brandon Sanderson and Patrick Rothfuss :)
Next Post: Finding Me - Finding Out pt Two
Previous Post: Finding Me - The Ripple Effect
Sunday, June 19, 2016
Finding Me - The Ripple Effect
The effect of Dad's diagnosis was profound and reverberated deeply down to the foundation of our family. The waves rippled out into not only our immediate relatives but to extended family and even the families of our in-laws. The ripples lightly splashed some and veritably drenched others.
It was a revelatory experience for multiple people, but as I said in the prelude each person's story is their own and I will let them share or not as they will. I will try to limit my own words regarding others to what they themselves have shared openly.
Externally speaking, the effects were most visible to me in my parents. For Mom it answered so many questions, so very many questions about their relationship and marriage. She looked back and was able to see things she had never seen before, including the unique ways Dad showed is deep, deep love for her that had previously been lost in translation. It has been amazing over the last two years to watch her fall in love with him all over again! Everything was seen in a new and refreshing light bringing far more answers than could ever have been had pre-diagnosis.
Dad was reeling from the experience of getting tested and was deeply impacted by the official diagnosis. As I mentioned in my last post he was examining and reexamining so many memories and habits, tendencies and preferences. Nothing had changed but everything was different. There were answers, yes, so many answers, and yet his frame of reference for processing everything had been fundamentally altered. The months prior to his diagnosis had been occupied a lot by discussion of autism and what his results would be, yet by the time his appointment approached he was done. He wanted nothing to do with it. During his test he thought that it was a waste of time, it was obvious that he wasn't autistic. "Really?" The hinted incredulity in the tester's response was the first indication he had that his perception of his answers were not nearly as "normal" as he thought.
The next few days, weeks and months had a profound impact on him and by extension me. On receiving word of his official diagnosis I spent some serious time reflecting on what it meant for him, on thinking back to my own experiences with and knowledge of him, and on my perceptions of his tendencies and 'pecadillos' that made him uniquely him. We went to lunch in those first few days and talked a lot about the whole thing. I was grateful for the chance to spend time with my dad and learn more about him, and he expressed gratitude for the chance to talk about everything and discuss it all, and that I was able to talk about how it had impacted me and discuss what I thought of the whole situation. We spent days and weeks talking about it, and I will forever be grateful for that time we spent together and for just how openly my father discussed his experiences and shared his thoughts.
So many people, the vast majority of people, when they hear that someone is autistic are inclined to immediately jump into stories of their own autistic relatives' or neighbors' children. Alternately they seem to lose the capacity to converse with that person altogether, not knowing what to say or feeling completely out of their depth. I want to say right now that you already know more autistic people than you think. While many of the statistics being touted today regarding autism refer to children, guess what! Those children grow to be adults. Those adults are still autistic, though some of us "pass" for "normal" more than others. We may have different social cues than others but we are still out there, and you already talk to us and work with us on a regular basis. About one in every 60 or so of the people you meet in Utah are autistic. People, not just children. Anyways, moving on.
During the time prior to my dad's diagnosis he was called once again as Gospel Doctrine teacher in our ward. While he is an amazing teacher, it left quite a few people in our ward puzzled and sometimes ... indignant? Is that the right word? He had been virtually inactive for several years prior to the calling, and so many people had no idea why or thought that it was inappropriate that he should be called to teach a class on doctrines that he hadn't been seen to be following by attending church, etc. I will say right now that he has one of the strongest testimonies of anyone I know, and he did not lose it during that time!
My dad finally saw fit to let the ward know about his diagnosis during a fast and testimony meeting, after which while it answered many questions in the ward it changed how people interacted with him. While it mostly seems to have resulted in greater patience, a good thing, it has had one disheartening effect--people don't really talk to him anymore. He used to gave amazing conversations with ward members after his Gospel Doctrine lessons when they'd discuss the lesson he'd taught, or when they'd seek his (amazingly insightful!!) perspective on struggles they were facing in their own lives or with various family members. He has such great love for the gospel and such a great perspective on the scriptures! I never see him more passionate and tuned in than when we discuss gospel principles and how we apply them in our lives.
Moving on to the rest of the family, as I said each person's story is their own. Within a year and a half of my dad's diagnosis the younger of my two brothers, three of my nephews and one of my nieces had also received official autism diagnoses, with another nephew likely. Several adults in our family are now self-diagnosed but have chosen for various reasons of their own to not seek official testing. As to the family-diagnosed part, it spreads up and down on both sides of the family and into the family of our in-laws. I will not mention names or relationships here, though, as that is not part of my story or any of my business to share. There is one exception, and that is to mention that in discussing whether or not one particular member of my family is autistic, Mom said "well if [they are], then Deborah definitely is".
While initially I could see why she had say that, I disagreed politely and moved on with my day. The thought would occasionally (and by occasionally I really mean all-consumingly) pop into my mind though, and I decided to pray about it the next day. The Lord very clearly said, paraphrasing here, 'why yes, yes you are'.
Next Installment: Finding Me - Finding Out
Previous Installment: Finding Me - Nothing's Changed but Everything's Different
It was a revelatory experience for multiple people, but as I said in the prelude each person's story is their own and I will let them share or not as they will. I will try to limit my own words regarding others to what they themselves have shared openly.
Externally speaking, the effects were most visible to me in my parents. For Mom it answered so many questions, so very many questions about their relationship and marriage. She looked back and was able to see things she had never seen before, including the unique ways Dad showed is deep, deep love for her that had previously been lost in translation. It has been amazing over the last two years to watch her fall in love with him all over again! Everything was seen in a new and refreshing light bringing far more answers than could ever have been had pre-diagnosis.
Dad was reeling from the experience of getting tested and was deeply impacted by the official diagnosis. As I mentioned in my last post he was examining and reexamining so many memories and habits, tendencies and preferences. Nothing had changed but everything was different. There were answers, yes, so many answers, and yet his frame of reference for processing everything had been fundamentally altered. The months prior to his diagnosis had been occupied a lot by discussion of autism and what his results would be, yet by the time his appointment approached he was done. He wanted nothing to do with it. During his test he thought that it was a waste of time, it was obvious that he wasn't autistic. "Really?" The hinted incredulity in the tester's response was the first indication he had that his perception of his answers were not nearly as "normal" as he thought.
The next few days, weeks and months had a profound impact on him and by extension me. On receiving word of his official diagnosis I spent some serious time reflecting on what it meant for him, on thinking back to my own experiences with and knowledge of him, and on my perceptions of his tendencies and 'pecadillos' that made him uniquely him. We went to lunch in those first few days and talked a lot about the whole thing. I was grateful for the chance to spend time with my dad and learn more about him, and he expressed gratitude for the chance to talk about everything and discuss it all, and that I was able to talk about how it had impacted me and discuss what I thought of the whole situation. We spent days and weeks talking about it, and I will forever be grateful for that time we spent together and for just how openly my father discussed his experiences and shared his thoughts.
So many people, the vast majority of people, when they hear that someone is autistic are inclined to immediately jump into stories of their own autistic relatives' or neighbors' children. Alternately they seem to lose the capacity to converse with that person altogether, not knowing what to say or feeling completely out of their depth. I want to say right now that you already know more autistic people than you think. While many of the statistics being touted today regarding autism refer to children, guess what! Those children grow to be adults. Those adults are still autistic, though some of us "pass" for "normal" more than others. We may have different social cues than others but we are still out there, and you already talk to us and work with us on a regular basis. About one in every 60 or so of the people you meet in Utah are autistic. People, not just children. Anyways, moving on.
During the time prior to my dad's diagnosis he was called once again as Gospel Doctrine teacher in our ward. While he is an amazing teacher, it left quite a few people in our ward puzzled and sometimes ... indignant? Is that the right word? He had been virtually inactive for several years prior to the calling, and so many people had no idea why or thought that it was inappropriate that he should be called to teach a class on doctrines that he hadn't been seen to be following by attending church, etc. I will say right now that he has one of the strongest testimonies of anyone I know, and he did not lose it during that time!
My dad finally saw fit to let the ward know about his diagnosis during a fast and testimony meeting, after which while it answered many questions in the ward it changed how people interacted with him. While it mostly seems to have resulted in greater patience, a good thing, it has had one disheartening effect--people don't really talk to him anymore. He used to gave amazing conversations with ward members after his Gospel Doctrine lessons when they'd discuss the lesson he'd taught, or when they'd seek his (amazingly insightful!!) perspective on struggles they were facing in their own lives or with various family members. He has such great love for the gospel and such a great perspective on the scriptures! I never see him more passionate and tuned in than when we discuss gospel principles and how we apply them in our lives.
Moving on to the rest of the family, as I said each person's story is their own. Within a year and a half of my dad's diagnosis the younger of my two brothers, three of my nephews and one of my nieces had also received official autism diagnoses, with another nephew likely. Several adults in our family are now self-diagnosed but have chosen for various reasons of their own to not seek official testing. As to the family-diagnosed part, it spreads up and down on both sides of the family and into the family of our in-laws. I will not mention names or relationships here, though, as that is not part of my story or any of my business to share. There is one exception, and that is to mention that in discussing whether or not one particular member of my family is autistic, Mom said "well if [they are], then Deborah definitely is".
While initially I could see why she had say that, I disagreed politely and moved on with my day. The thought would occasionally (and by occasionally I really mean all-consumingly) pop into my mind though, and I decided to pray about it the next day. The Lord very clearly said, paraphrasing here, 'why yes, yes you are'.
Next Installment: Finding Me - Finding Out
Previous Installment: Finding Me - Nothing's Changed but Everything's Different
Saturday, June 18, 2016
Finding Me - Nothing's Changed but Everything's Different
These words were first uttered by my Father in 2014 after he became the second person in my immediate family to be diagnosed as autistic. May 20th is now known as "A-Day" and marks the anniversary of his diagnosis, which launched the official diagnosis of 5 immediate and extended family members as well as the self-diagnosis or "most likely" family-diagnosis of several generations of others.
Our family's history of autism diagnoses actually started about six years ago. While driving down the freeway, my dad found himself listening to a talk show discussion of Asperger's/Autism and realizing that the characteristics being described fit one of my brothers, the older of the two, quite perfectly. As he was struggling at college at the time, my parents ended up with him at his University's Autism Clinic. Once he received his official diagnosis he was able to request and receive accommodation at the University in order to continue his education. While it would be reasonable to think that this event would have been the catalyst in our family, it was not the catalyst that it might have been. Our brother had always been unique, different in multiple ways to the point that when the word of his diagnosis spread it was more of an "oh, that makes sense!" moment rather than a shocking "if he's autistic, I wonder..." moment. While there was some discussion of which side of the family his autism would have come from, it didn't ever go very far though I did agree that it was more obviously through Dad. Yes, Dad, this is the first time I thought you might be autistic, not in 2014. It just never really went anywhere. As far as my brother, he seemed to more or less shrug his shoulders, saying something to the effect of "I always knew I was different, now I know why".
Fast forward to early 2014. My parents were on a date, having gone to dinner together. While talking about my other brother, the younger of the two, as possibly being autistic my mom made a comment that absolutely stunned my father. After referencing several things my brother struggled with, she made the comment to my Dad of "that's like you with school". I kind of get a jaw dropped, deer in the headlights mental visual of my dad's mental state when he tells the story and of the impact that line had on him. It began a cascade of thoughts, emotions and revelations in him that lasted for at least two years, only beginning to really taper off about half a year ago. He was on veritable pins and needles mentally, emotionally and even physically for months until he was officially diagnosed, and even then it did not abate as the diagnosis was reviewed, evaluated, inspected, denied, accepted, rejected, denied, denied, accepted, denied...accepted... ... ...
I admit I'm glad I found out at 31 years old and not at 56, as he was at the time. I have 25 years of memories fewer than he did to examine in a whole new light. I do consider myself blessed that I was able to spend a lot of time talking and, more importantly, listening to Dad through this whole experience. I realized then that I knew a lot more about autism than I thought (heh, little did I know then how intimately I know it!) and it brought me even closer to truly understanding the real him, not just my perception of him formed while growing up as his daughter. He talked a lot about his experiences of looking back through his life and seeing his past in an entirely different way. Nothing had actually happened to change those experiences except how he saw them, yet oh how differently he saw them! Two months later my Mom even created a facebook post centered around the whole concept, heading it the same way I did this post. Nothing's changed but everything's different. We all began to look back at our pasts, seeing just how immense an impact my Dad's previously undiagnosed autism truly had in our parent's marriage and in our own lives.
Next Installment: Finding Me - The Ripple Effect
Previous Installment: Finding Me - Prelude
Our family's history of autism diagnoses actually started about six years ago. While driving down the freeway, my dad found himself listening to a talk show discussion of Asperger's/Autism and realizing that the characteristics being described fit one of my brothers, the older of the two, quite perfectly. As he was struggling at college at the time, my parents ended up with him at his University's Autism Clinic. Once he received his official diagnosis he was able to request and receive accommodation at the University in order to continue his education. While it would be reasonable to think that this event would have been the catalyst in our family, it was not the catalyst that it might have been. Our brother had always been unique, different in multiple ways to the point that when the word of his diagnosis spread it was more of an "oh, that makes sense!" moment rather than a shocking "if he's autistic, I wonder..." moment. While there was some discussion of which side of the family his autism would have come from, it didn't ever go very far though I did agree that it was more obviously through Dad. Yes, Dad, this is the first time I thought you might be autistic, not in 2014. It just never really went anywhere. As far as my brother, he seemed to more or less shrug his shoulders, saying something to the effect of "I always knew I was different, now I know why".
Fast forward to early 2014. My parents were on a date, having gone to dinner together. While talking about my other brother, the younger of the two, as possibly being autistic my mom made a comment that absolutely stunned my father. After referencing several things my brother struggled with, she made the comment to my Dad of "that's like you with school". I kind of get a jaw dropped, deer in the headlights mental visual of my dad's mental state when he tells the story and of the impact that line had on him. It began a cascade of thoughts, emotions and revelations in him that lasted for at least two years, only beginning to really taper off about half a year ago. He was on veritable pins and needles mentally, emotionally and even physically for months until he was officially diagnosed, and even then it did not abate as the diagnosis was reviewed, evaluated, inspected, denied, accepted, rejected, denied, denied, accepted, denied...accepted... ... ...
I admit I'm glad I found out at 31 years old and not at 56, as he was at the time. I have 25 years of memories fewer than he did to examine in a whole new light. I do consider myself blessed that I was able to spend a lot of time talking and, more importantly, listening to Dad through this whole experience. I realized then that I knew a lot more about autism than I thought (heh, little did I know then how intimately I know it!) and it brought me even closer to truly understanding the real him, not just my perception of him formed while growing up as his daughter. He talked a lot about his experiences of looking back through his life and seeing his past in an entirely different way. Nothing had actually happened to change those experiences except how he saw them, yet oh how differently he saw them! Two months later my Mom even created a facebook post centered around the whole concept, heading it the same way I did this post. Nothing's changed but everything's different. We all began to look back at our pasts, seeing just how immense an impact my Dad's previously undiagnosed autism truly had in our parent's marriage and in our own lives.
Next Installment: Finding Me - The Ripple Effect
Previous Installment: Finding Me - Prelude
Friday, June 17, 2016
Finding Me - Prelude
Today I went with a friend to see the movie "Finding Dory", a beautifully made movie about an amazing character with great gifts and one particular big challenge. Seeing Dory go through her challenges reminded me of a few things I want to talk about. While I do not personally struggle with short-term memory loss, there are a few other things I've experienced that I have been coming to understand in much greater depth this last year or so, particularly over the last few months. These experiences have actually led to me not being able to remember most of my childhood; only as I've been seeking to understand myself over the last little while have I been okay delving into the depths of me.
I've made it sound so ominous--I will say right here and right now that I did not have a bad childhood! I am in a loving family with incredible parents and awesome sisters and brothers. I had no major traumatic events in my personal history. I am grateful for my entire family and have lots of good memories of fun times, and have a lot of love for each and every person I am privileged to call a part of my family! If you feel that any particular experience in this blog series refers to you, please know that I am not saying anything from a position of bitterness or out of a desire for revenge or to call anyone out. I simply want you to know me a bit better, since no one ever wants to actually talk about the "A" word except for Dad and occasionally Mom, yet it has impacted so, so many parts of our lives individually and as a family. Positively and negatively. Know that I love you more than you can imagine.
For those of you who are not "in the know", the "A" word to which I am referring is Autism. Yes, I am autistic. Yes, I know that many of you already know that. No, I do not expect anyone to do anything about it. Yes, finding out has had an absolutely paradigm-shifting effect on my perception of myself and my entire life, much as it has had on others in our family. No, no two experiences are alike, as no two people are alike. This is my story, yours is your own.
I've titled this series of posts "Finding Me" because of the surprising accuracy of that statement in what has been going on this last year. I am increasingly awed at just how much weight that statement has, and at how extremely appropriate a title it is for the movie Finding Dory. It is exceptionally insightful in hindsight. I can finally look at my own life in hindsight, and find myself relating so much to the entire concept.
Stay tuned for the next installment: "Finding Me - Nothing's Change but Everything's Different"
I've made it sound so ominous--I will say right here and right now that I did not have a bad childhood! I am in a loving family with incredible parents and awesome sisters and brothers. I had no major traumatic events in my personal history. I am grateful for my entire family and have lots of good memories of fun times, and have a lot of love for each and every person I am privileged to call a part of my family! If you feel that any particular experience in this blog series refers to you, please know that I am not saying anything from a position of bitterness or out of a desire for revenge or to call anyone out. I simply want you to know me a bit better, since no one ever wants to actually talk about the "A" word except for Dad and occasionally Mom, yet it has impacted so, so many parts of our lives individually and as a family. Positively and negatively. Know that I love you more than you can imagine.
For those of you who are not "in the know", the "A" word to which I am referring is Autism. Yes, I am autistic. Yes, I know that many of you already know that. No, I do not expect anyone to do anything about it. Yes, finding out has had an absolutely paradigm-shifting effect on my perception of myself and my entire life, much as it has had on others in our family. No, no two experiences are alike, as no two people are alike. This is my story, yours is your own.
I've titled this series of posts "Finding Me" because of the surprising accuracy of that statement in what has been going on this last year. I am increasingly awed at just how much weight that statement has, and at how extremely appropriate a title it is for the movie Finding Dory. It is exceptionally insightful in hindsight. I can finally look at my own life in hindsight, and find myself relating so much to the entire concept.
Stay tuned for the next installment: "Finding Me - Nothing's Change but Everything's Different"
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