I got off early yesterday, so we were able to go to a friend’s house to have dinner and play games. Afterwards, we met up with another friend to watch a movie, which was also really fun.
My favorite show started up again last night, so I was able to watch the new episode of “The Good Doctor” tonight. It hit close to home because I relate so much to the main character, but I just love that I can explain my feelings through someone people can watch on screen.
Not many people realize I have autism. It is not a topic that comes up very often in everyday conversations. And I have grown so much in my abilities to communicate and cope with my surroundings that I hardly notice it much of the time. Through all this, I have realized how important it is to have opportunities to learn and grow.
Most people take talking for granted. They see friendship and having conversations throughout the day as normal, everyday occurrences. This is not always the case for someone with a disability or for someone who is a loner or an outcast or even just an introvert. I remember being afraid of my voice as a teenager and young adult because I used it so little that I was constantly afraid it would not come out right when I needed it.
I have grown so much over the last several years because of the opportunities I have been given to communicate with others. I have seen the differences in my abilities to communicate because of the practice I get in communicating. I talk to people constantly at my work and at home with friends and family.
This has not always been the case in my life, and I first started noticing the difference when I visited my sister’s family on a regular basis. I noticed that it was easier to communicate and the words came more readily because I would always talk more when I was with my sister. I would read books aloud to her children. I would be engaged in conversation with the family and extended family. I was given the opportunity to use my voice more in those situations, and it created a notable difference in the rest of my week.
Since that time, I have been given an incredible amount of opportunities to improve my social and communication skills. I was asked to teach a class at church. I translated often at work and conducted orientation meetings for new hires. I gained a best friend that pushed the limits of my communication skills and allowed me to explore the social demands of friendship in ways I never had before. I was constantly using my voice and communicating my needs and using my social skills. They say that practice makes perfect. I am not sure if that is true, but practice definitely makes you better. The more I was able to practice my skills, the better they became.
My point with all of this is that growing up, I went to therapy and had scattered opportunities to learn communication and social skills, but it was not enough. I learned the skills necessary to place an order, ask a question, or do other things that were required of me, but it never came easily. It was a constant battle to communicate my needs and not feel lost in a world that I could not seem to understand. Now, communication and life in general has become much easier to handle. I know how to do things that I never thought possible in my earlier years. And things do come relatively easily.
I don’t know if it would have been possible for me to have more positive social experiences while growing up. I was an outcast and bullied and extremely cautious with who I trusted because of those things. But I hope that the world has changed enough that it is more possible for children today to have these experiences. I hope it is more possible for children with autism to learn social skills by practicing with their peers. I know the importance of those opportunities. I have seen how much of a difference they can make. And I hope we all try a little harder to give people the opportunities they need to become better.
Last week was an especially difficult week emotionally. I had multiple breakdowns a day and just struggled to control my emotions several times throughout the week. By the end of the week, I realized that this was not simply the result of inconvenient timing of mood swings but was instead directly correlating to my eating habits. The longer it took for me to get food, the more aggressive and anxious I became.
I have always known that I struggle with handling needing food. I can tolerate hunger and can go without eating for a while without issues, but if I do not get food when I am expecting to eat, I lose self control. I lash out and have even injured myself at times. This probably sounds a bit extreme, but I looked up a couple articles about “hanger” and aggression around hunger. The ones I found most relevant explained that low blood sugar can decrease serotonin, which increases stress and affects the ability to regulate your mood.
As someone who already struggles with serotonin levels and mood regulation, this can easily send me over the edge. I remember as a kid, kicking myself off a bed because I was so hungry that I didn’t know what to do with myself. The biggest problem with all this is that it is difficult to provide food for yourself when you get to that point. Trying to cook something when your brain isn’t working leads to more anger and frustration because the process takes too long or is not going as planned.
At this point, I have realized as an adult that I have three options. I can withdraw myself from the situation until my body tires itself out and I no longer have the energy to be aggressive, or I can try to maintain self control just long enough to get something to eat, or I can allow things to get to the point when I explode and am at risk of hurting others or myself. I can’t tell you how many times I have experienced these problems as an adult, much less as a child. Granted, as a child, someone else was mostly responsible for providing food for me, but I had less control about how or when that food came.
I think it is interesting to note the differences between what we expect of children and adults. Often when we become most frustrated with how someone is acting, there is probably a physiological component to their behavior. Maybe they literally cannot just keep calm and carry on. Maybe they cannot communicate their needs. Maybe they cannot provide for themselves in the ways we expect. The difference between children and adults though is that we expect the child to learn to do these things and the adult to know how to do these things. But maybe instead we need to focus more on why things are happening to help prevent the physiological reaction because at that point, it is too late in many ways to avoid unwanted reactions.
I have been thinking a lot lately about my childhood. One thing I realized is that I didn’t know how to explain my needs so that someone could help with them. It wasn’t until I was on my own at a university that I could finally focus on and address my own needs.
I bought myself clothes that felt soft and made me more comfortable, so that I could handle sitting still more easily. I bought ear plugs that I used in classes when the lecture was too loud. I never had super bright classrooms in college, but I could have easily bought transition lenses and no one would have said anything about me wearing “sunglasses” in class. Now, I often use the night view on my rearview mirror because headlights are too bright for me. I also have tinted windows on my car that help with brightness during the day. I carried snacks with me to eat during class or before or after to help calm me down. I still have a car full of snacks for this.
The thing I realized is that adults expect so much of children and teenagers. If you don’t meet the expectations, you are said to be acting out, when in reality you are simply being yourself. I remember one time in high school when I got in trouble for taking notes about what the teacher was saying because I did not know how to defend myself when she accused me of not paying attention. There are many stories I can tell like that. I did not know how to communicate my thoughts or needs or desires, so I ended up getting in trouble because adults did not understand. But how can you possibly have your needs met when everything is stacked against you?
So I endured elementary school and middle school and high school, until I could finally address some of my needs in college. And this is what we require all our children to do! We require them to fit the norm, with the pretense that it is preparing them for the real world. In reality, the real world is about enjoying life and finding ways to cope with the less enjoyable parts of life. We may not understand what a child needs, but I think it is important to ask ourselves if a “problem behavior” is really a need that is not being met. Don’t just avoid the problems or force children to ignore them, give them ways to cope. Try to find solutions instead of just seeing the child as the problem.
Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month’s Voices of Special Needs Hop? Click here!
If those of us who felt like we don’t belong stopped trying, the world would lose something beautiful that it desperately needs.
I have been suicidal for as long as I can remember. My earliest childhood memories are of wanting to open the car door on the freeway. I knew from an early age that I did not belong. I was different. I could not explain how or why at the time and there are still things that I cannot explain that make me different, but I have a deep, persistent, aching feeling that I can never belong in this world.
There are days when I wonder why I keep trying. I consider all my options and ask myself why I should stay where I am and continue trying to live this life. There have been a lot of suicides in the news over the last few years. More people of prominence, that are well-known and adored by family, friends, and fans, are taking their lives. And it makes me wonder, why not me? I have thought about suicide all my life. Why should I stay when others are leaving?
I have come to the conclusion that people who don’t belong are more needed than ever. It is in this turmoil and drowning world that those of us who are drowning internally are most needed. We know what it is like to lose everything. We know what it is like to hurt in ways we could never explain. We are experienced in ways that others are not. We see things in ways others do not.
I recently watched “Tomorrow Land” and thought that if there was a satellite making our thoughts dwell on our impending doom, it would make sense to want to “abandon ship” by leaving this world behind. But I wonder if instead, we can be like the girl in the movie who saved the world by believing that it could be changed. We can consign ourselves to our fate. We can leave. We can stop trying so hard. But… What if we didn’t?
What if the ones who didn’t belong just kept not belonging, but stopped pretending? What if we just let people know we don’t belong? I know it is not easy to tell someone to stay when everything in them is ready to leave, but… We’re needed. The ones who don’t belong are needed. And maybe that is a reason to stay.
I have been watching “The Good Doctor” recently. It is my favorite show I have ever seen because I relate to so much of what the doctor goes through. I have read online that this show has caused a lot of controversy in the autism community. Some people even refuse to watch the show because they feel that someone with autism should play the main character or be more involved in the filmmaking. Another reason people are opposed to the show is that it only shows a narrow view of autism. It shows the experience of “the autistic savant”, which is not how most people with autism experience the disorder.
I understand these concerns, and I understand the desire to have more people’s experiences shown on television and in movies, but I understand it even more after watching this show. The Good Doctor is everything I ever wanted to show people about my autism but never had the ability to communicate. I encourage everyone close to me to watch the show because it so accurately portrays my thoughts and feelings. I look forward to every episode because it shows all of the things that I cannot show and tells them in a way I could never do. I wish that everyone could have this experience. I wish that everyone could refer their friends or family to a particular character, or even episode of a show, and say that is my experience- that is what it feels like to be me.
I have spent my life trying to hide everything about me that could be considered autistic. I have succeeded in this to the point that even therapists did not believe that I had autism. I remember one particular school counselor in high school that told me I had a hard time making friends because of my level of intelligence. She said that I probably did not relate to the other students that had lower IQ levels than me, which was interesting because she did not even believe me when I told her my IQ level and said it was probably 40 points lower than I stated. Anyway, the point is that I am very good at hiding my autism, and my intelligence helps me to do that.
Sometimes, though, I would like people close to me to understand what I go through. Even though I do not like to “be autistic”, I would like my friends and family to see how hard certain things are for me. However, I have trained myself to not show autistic traits, and I cannot force myself to show my feelings, even to the people I trust the most. The only time that you can tell I have autism is when I have a mental breakdown, which makes it too late to explain my feelings and rarely happens around other people.
I understand that not everyone with autism is a savant or a genius or relates to Dr. Shawn Murphy in “The Good Doctor”, but it is important to have shows like this. It is important to show someone’s experience. Even if it may not be the experiences of the majority of people with a disorder, it is a step towards explaining the unexplainable. It is a way for someone to understand the experiences of another. I hope that they make a lot more shows like this. I hope that they make more shows that try to exemplify the experience of a particular group of people. This show has meant so much to me over the past few months. It has been a source of comfort and commiseration. I hope everyone is able to experience that someday.
I had this insight at church today about Luke 1:37. One translation says, “For with God nothing shall be impossible.” I think it is interesting that it says “shall be” because sometimes things are impossible at the moment, but that doesn’t mean they will always be impossible. God can mold and shape us into a new person that can do what was impossible for who we used to be.
I have done things that were once impossible for me, but are now natural and even easy. I asked for help to do these things. I tried over and over, but I had limitations that I could not overcome by myself. But, then, I changed. I became a new person because people saw something in me that I could not see in myself.
We are so often told that God won’t give us more than we can handle or that all things are possible with God, but the process is not explained very often. God makes us so that we can handle things. Sometimes that is through trials, but I think most often it is through other people. People teach us, change us, and stretch us to become more than we once were. And sometimes it is not a good experience. Sometimes it is difficult, painful, and heartbreaking experiences with people that force us to become better.
I think in the end though, we can find reasons to be grateful for all the growth experiences, even the unpleasant ones. The key is allowing yourself to be changed, so that the impossible can become possible.
I have been struggling lately. I have a hard time regulating my emotions and finding positive outlets for them. It is probably because I am working two jobs. The interesting thing is that working two jobs does not feel hard most of the time. The jobs themselves are fairly enjoyable, and I rarely feel overwhelmed at work. The only part of working that has been overwhelming is scheduling the jobs around each other. It is hard to make sure you get everything done when you don’t have enough hours in the day to do everything.
The real struggle though is everything else. Having autism means that everything is bombarding my senses all the time. I am extremely protective of the autistic side of me. I have developed a long fuse or way to hide my autism despite it wanting to come out in difficult situations. The same thing is true for my depression. I prevent these parts of me from coming out just anywhere because I know most people do not understand and that could potentially be very dangerous for me.
Working two jobs has forced me to take care of myself in ways I have not done before because I do not want the vulnerable parts of me to come out at times when I am working. However, self care can only go so far. I still work two jobs and have depression and autism, so I tend to get to the end of what I can handle when I get home. This means that I have been having more meltdowns and breakdowns and more thoughts of suicide and self harm.
This is especially true at times when my body needs something. I find myself to be overly aggressive when I feel hungry. I have broken things or yelled at people or thrown items when my stomach feels even slightly empty. I have also struggled with self harm and suicidal thoughts and feelings of desperation and loneliness when I am tired. It is interesting to me how completely hopeless I can feel at night, but it all seems to dissipate when I wake up in the morning. How can I go from the brink of suicide to feeling mostly at peace in just a few hours?
The best explanation is that I am not truly suicidal. I love my life. I do not want to die. But my body is unable to handle life and simply wants the pain to stop. I remember times when I was truly suicidal. I was convinced that I was a burden. I felt that the world would be a better place without me. I felt sure that my family and friends would be better off without me. That is no longer the case. I don’t feel like anything would be better off without me. I just want the pain inside me to get better. I want to stop hurting so much.
Of course, there are lots of ways to help your body handle more. Eating, sleeping, hugs and other physical touch that helps you feel loved, spending time doing something you enjoy or being with someone that relaxes you, and anything else that helps you feel better mentally, physically, or emotionally allows you to be able to handle more of life. I have learned from spending my life trying to hide my autism and depression, etc. that you can force yourself through almost any situation if you use the right resources to help your body cope.
So, I guess the point of this post is to remind myself and others to find ways to cope. Find things that relax you, that help you feel loved and wanted and needed, or that meet a physical need. By finding and doing things that help your body feel better, you allow your body and mind to be able to handle more difficult situations. You allow yourself to be able to get through things you could not handle before. And you might be surprised at the difference it makes it your mental and emotional state.
Every once in a while things really get to me. I feel different, flawed, unlovable. I am usually not sure what starts it, but it is hard to pull myself out of that mindset.
I was spending time with my best friend last night and kept breaking down because I felt alienated from the world. I feel like I don’t fit in and don’t belong. I love being with my friend though. She is one of the few people that helps me feel whole and always makes me feel like I belong in some way. I am so grateful for that. My friend continually assures me that she enjoys being friends with me and loves the things that make me different.
But it is hard to feel like I belong when I have never met anyone like me. I know that no two people are alike, but I mean more that my personality seems like a stark contrast to those around me. It probably doesn’t make sense, but one of the things I struggle with the most is feeling like I love people too much. I constantly think of others. I see them in everything. Sights, sounds, smells, tastes, textures, almost everything reminds me of a memory with someone. I buy presents and other things for people all year long because I see things that remind me of them or that I feel they would enjoy.
Maybe that is what brought on these thoughts. With the holiday season, I questioned my sanity. Was it wise to travel long distances to see others for a short time? Was I ridiculous for having too many gifts for family and friends? Did I do more than a reasonable person would do in similar circumstances?
I normally love Christmas. It is one of the few times a year that I feel like I fit in. People do more of the things I tend to do on a regular basis. But this year, Christmas felt like a lie. People are not giving and loving and helpful all year round. Drivers are selfish. Most people do not constantly think of others at the grocery store or during other daily routines. How can we sing these songs of keeping Christmas in our hearts when most people don’t?
I regularly do things for others that most people would not do. I have travelled all day to be with a friend for a few minutes. I have gone above and beyond to help a friend in need. I have sacrificed my own comforts to help someone else feel better. And the thing is, I know all of these things are good, but I feel so flawed for doing them.
This has made me feel like I do not belong in this world. I feel misunderstood. I feel like the world swirls around me while I crave to be connected to it. Is there a place for me? Is there somewhere I can belong? Is there someone who will see me as all that I am and love me anyway?
I want to believe that I am needed here, that I have a place in this world. I want to feel like I belong, even though this world doesn’t feel like home. Was I put here for a reason? Is there a reason I don’t feel like anyone else understands? Do my differences benefit others in positive ways? And most of all, can I ever belong in a world where I was born to stand out?
I don’t really like Santa. I mean, I have nothing against the guy. Anyone who spreads hope and joy and love is definitely someone to be admired. I just don’t personally care for the big guy. I do not remember writing letters to him while growing up or wanting to sit in his lap. I am also not very good at coming up with things I want as gifts, so Santa seems rather pointless when you don’t really want anything.
Anyway, we had a party last night at my church. There was good food and gifts and Santa. The party was for young single adults, so it was pretty cool to have Santa there because people could feel like children again by sitting on his lap. But I had no desire to go see Santa. And it wasn’t that I don’t really like pictures, I just feel no connection to him. And maybe it is because I never really did things most children do. I never liked patty cake, and I had no desire to participate in tetherball or hopscotch or so many other games that my fellow students enjoyed.
I guess I’m just posting this because I wonder if anyone else feels the same way. It’s not that I grew out of Santa, I guess I just never grew into him. Is that an autism (Asperger’s) thing or just a personality thing? I mean, I love Christmas and Christmastime and giving and nativities and so many other things that have to do with Christmas. I just don’t really care for the Santa part of Christmas. And I know I can probably be described as “a tight-fisted hand at the grindstone” like Scrooge from A Christmas Carol, but I try to harbor good feelings at Christmastime and give what I can. Do I have to like Santa to not be a Scrooge?
autismthoughts 