Corona Virus Plea

I am a skeptic. I rarely believe what I hear from rumors or the media. I need to find out for myself what is true. From the beginning, I was not scared of Covid-19 (A.K.A. Corona virus) because I am healthy, young, and wash my hands regularly. However, after hearing stories from some of my friends, I thought it was important to share their thoughts on quarantines, social distancing, and good hygiene.

One particular friend’s story struck a chord with me. She shared that she has four immediate family members who are at risk of death if they contract corona virus. Her brother is most at risk because he  was hospitalized recently for trouble breathing on his own. She shared her anxieties in trying to get all the necessary supplies to help her family self-isolate until the risk of sickness decreases and her fears that they may not survive if one of them contracts Covid-19.

I will tell the rest of the story in her own words:

As I’m unloading bags from my store trips, my brother is watching the news. We’ve explained the self-quarantine, social distancing, and how Taiwan, Singapore, and Hong Kong have successfully decreased death rates and even the virus in general by practicing these methods. The news goes on, reporting how parents are finding activities for the kids while they’re out of school. The activities are in the community. For example, the butterfly exhibit increased from 40 people a day to 200 today. This is not social distancing, and my brother knows it. He gets angry- he’s legitimately scared he’s going to die and hates the idea of severe pneumonia because he knows what it feels like to not be able to breathe. It sounds like a painful horrible death to him, and I understand why he feels this way. He says, “please, you have to call someone, you have to write letters. I want to live, and I don’t want to stay in the house forever. “We’ll run out of food. “There’s not enough, and I don’t have enough of the things I need to not get sick.” He’s right about it all! I don’t know who to call or write because so many people don’t really understand!

I don’t need to fear. Most of you don’t need to fear, but there are many in the vulnerable category who rightly need to fear and protect themselves. They need our help protecting them. They are relying on us! They are sitting in homes, praying they won’t need to suffer, afraid of not only death, like my brother who wants to do so much more and is not even 30, but also of the pain and suffering as breathing becomes more and more labored. They sit at home hoping something can stop this or at least greatly limit it. They’re doing all they can. I’m doing all I can for them.

I’ve seen posts- let’s pray, let’s fast, and yes, let’s do. But faith without works is dead, prayer without action is asking God to stop us instead of partnering with him. We need not fear. The reason for this is to put our prayer into action and answer the prayers of my brother, of my father and mother, and my sister. The point of this is to answer the prayers of family members like me! We have a real chance to bear one another’s burdens to stand as brothers and sisters in this great human family. It is a unique and wonderful and beautiful opportunity if we choose to take it.

My niece who is quarantined with them said, “I don’t want to stay inside all day. It’s hard.” I said, “Well, if it keeps your Mom, and grandpa and grandma, and Uncle Matt from getting sick will you do it?” Yes, she meekly nods and says, “but for how long?” “How long would you do it if it keeps them dying?” She looks at me with a big smile and adamantly says, “Forever. I’d even stay in here forever if it meant saving someone’s life I didn’t know, but I love them so much longer than forever.” If a 9-year-old can do it, then why not us with all our children? Please hear my brother’s voice because I don’t know who to write to.

Would it have been worth it to you to go to the movie or restaurant or not limit your work outside or demand your employees come to work as even one person dies you don’t know? I believe most of us would be like my niece. I’m counting on this basic human goodness to help my family! So let me explain what social distancing is and looks likes so you can answer the prayers of my family and many others like them at this time:

Limit contact to no more than 50 people at any place, but staying under 20 is better and highly encouraged. Stay six feet away from anyone. If you have any symptoms, stay home and get tested immediately. Have people work from home as much as possible. Schools close. They don’t stay open for breakfast and lunch or childcare purposes for parents. You encourage the whole population to stay at home as much as possible. Employers and governments support parents in staying at home with their kids, working from home as possible, and ensuring people can financially do so while having their needs met. In the long run, the cost to governments and employers is cheaper than if this spreads, and the economy fares much better. No one goes to restaurants, movie theaters, malls etc. You only go out for medical care- if it’s absolutely necessary, for the job you have, and potentially to the grocery store or pharmacy. That’s it.

This isn’t a time to visit neighbors or family living in other homes. You stay in your home, and they stay in theirs. Kids don’t run back and forth between houses. We seriously distance ourselves for a few weeks from everyone possible. We wash hands often, disinfect often, use hand sanitizer, etc. Then at the end of a three-to-four-week period, we begin lifting some, but not all, of these restrictions. The spread is almost eliminated from the community, deaths prevented, and slowly we begin lifting aspects of the social distancing.

Take time to play with your kids. Have conversations. I promise that will be far more bonding and memorable than any movie you watch or place you visit. Let’s focus on relationships! Maybe you’re alone or live with roommates who just pay the rent and you aren’t friends with. Great, still focus on relationships. This is an excellent opportunity for us to reflect on our relationship with our higher power, maybe Karma, or Buddhist tradition, perhaps Allah. For me, it’s God and Jesus Christ. I’m anticipating spending deep reflection on where I’m going and how I’d like to improve. I will reflect on relationships, who I can apologize to or mend things with.

Then I’ll find ways to help others. I’ll find a single mother who needs to go to work and watch her kids during the day so I can support social distancing. I’ll find seniors, who shouldn’t go out, and shop for them. If anyone gets sick, I can cook soup and leave it on their doorstep, so I’m still social distancing. This doesn’t need to be a burden. It can be a beautiful time. A time where, as a community, we truly care for each other and we grow as individuals. We can come out of social isolation better and more whole. The choice is ours.

If there is one thing epidemiologists and the WHO have scientifically proven, it’s simply this- the spread of the disease, the severity of it and the death rates can be controlled by social isolation and distancing. It really is our choice! I truly hope people read this. Sharing things so personal doesn’t come easy to me. I’m typically much more reserved. Most people didn’t know my brother was in a coma, as I didn’t talk about it. But I share this because I kept thinking of my brother’s plea to me, “please write a letter, call someone, help me. I don’t want to get sick, and I don’t want to die.” This voice keeps me up tonight. I hope you hear my brother’s plea. Please help him, help my family members!

If you want to see the effects of social distancing and how it can help at this time, please click here to see the virus simulator.

 

You Have a Right to Mourn

I decided to give up gluten at the beginning of this week. I had already given up most foods that have gluten in them, but I hadn’t completely cut it out yet. In the past six months, I have limited my diet to foods with little fat, oil, sugar, acid, lactose, and sodium content. For the most part it has worked, but I haven’t followed the diet strictly until recently.

Going gluten free was a lost battle for me. It meant admitting that something really is wrong and accepting that it may never change. In a few weeks, it may not seem like a big deal. But it is a big deal right now, which has made me realize something.

I never thought of an autism diagnosis as a big deal. It was simply a name for a set of symptoms that already exist. I didn’t understand the need to mourn or the devastation someone may feel. But now I understand better. Parents don’t mourn the child or the diagnosis. They mourn the inability to hold onto something they wanted to have.

Right now, I am mourning that I may never enjoy pizza again, that I don’t remember the last cream filled donut I ate, that I do not know if I will ever again feel the sensory adrenaline of hot sauce. To other people who haven’t experienced this or who have been living with these problems for a while, it may not seem like a big deal. People who don’t know, who can’t know, or who know all too well, are giving me suggestions and advice, solutions for what they perceive to be my problem. But they all miss the point. I don’t need solutions right now. I just need to mourn.

Give me solutions in a week or two. Tell me what I’m doing wrong and what I can be doing better, just wait until I have had a chance to mourn first. Let me breathe in the reality of my situation for a moment. Let me process what this means and what it changes. Let me not be okay for a little bit. Then you can bombard me with your advice and solutions because maybe then I can handle it.

I am sorry for not understanding the need to mourn before. I am sorry for wanting people to realize that autism isn’t so bad before they are ready to. I am sorry for not recognizing your right to mourn.

You have the right to mourn what you wish could be. You have a right to cry and be sad or afraid. You have a right to not be okay for a while.

And maybe when you’re ready, we can discuss advice. Maybe when you have mourned, we can solve this together. Maybe once you have processed this, it won’t seem quite so overwhelming. In the meantime, I understand your need to mourn. And I respect that right. I hope people can understand and respect mine too.

High Functioning

What does that really mean?

Honestly, for me, it means that I’m really good at not doing what I want to do.

It means that when I want to be happy, I hold it in. And when I want to break down, I hold it in. And when I want to rock back and forth or flap or touch walls as I walk by or yell at people or jump up and down, I don’t.

So… don’t tell me I don’t have autism because I hold it in. Don’t tell me I don’t have problems because you don’t see me going crazy in the corner. I’m still going crazy; I’m just doing it where you can’t see it.

Yes, I’m high functioning… but that may not mean what you think it means…

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo! Want to join in on next month’s Sensory Blog Hop? Click here!

 

Disability, Not Disabling

This past week I did a training presentation on autism. I had been debating for a long time on whether or not I wanted to reveal that I have autism during that training. My manager was supportive either way, but said that he felt it would be helpful for people to know I have autism in order for them to gain a different perspective on the disorder.

Anyway, long story short, I decided to go ahead and say that I have autism in order to present some pertinent examples during my presentation. And the presentation went really well. I didn’t want it to be about me, but I wanted my story to add to the overall message. And I feel like it did exactly that.

A lot of the managers and supervisors also made comments and told stories about their experiences with family members or employees and that really added to the overall message as well. In the end, the message I wanted everyone to understand was that autism isn’t a problem in and of itself.

We all have problems and things that we deal with, but it’s when we allow those problems to disable us that they become disabling. Autism is considered a disability, but it is only really a disability when the person feels disabled. Feeling disabled means that you’ve lost the hope to try because you don’t feel there is a point when your disability will always cause you to fail. We all live with problems and can overcome those problems to live productive lives, but if we see ourselves as disabled we become a self-fulfilling prophecy.

You Make Me Feel Broken

This post is directed at no one in particular, but is a general response to the way autism is portrayed in society and media.

Yesterday I listened to a speaker who talked about handling rejection. He said that people handle rejection at different layers. At the outer layer, we hear the criticism, but don’t feel the need to change ourselves. At the next layer, we take the criticism personally and feel that we are being attacked in some way. And at the innermost layer, we take the criticism to heart and believe we are flawed and hopeless.

Well… after the speaker finished, I went up and talked to him about this. Because the truth is, autism hits me at the innermost layer. When something that I feel is related to autism causes a problem, I feel flawed, broken, and hopeless.

The other day someone misunderstood me and became upset with me for how I handled a situation. For the first time in my life, I admitted that I had autism not because I wanted to but because I felt I had to. And I felt so broken after that. Because it’s not gone. Autism is not cured and it doesn’t disappear. We just learn to seem normal. But when problems come up, autism is still there. And it cuts me to the core to realize that because I can’t change it. I can’t get rid of autism and the world keeps telling me indirectly, or even directly, how much of a problem that is.

And so, I feel broken. Even though no one has told me that I’m broken, I keep feeling it. Every time I see or hear of a parent who is devastated with their child’s diagnosis or I see videos about “the harsh reality of autism” or someone carries on about vaccines causing autism, the idea that I am flawed becomes more and more ingrained in me. And I can’t help but feel broken.

Blaming the Cheese- Part 2

So if we don’t blame the cheese, what should we blame?

If autism isn’t the real problem, what is?

Well, some people believe vaccines are to blame. There’s a heated debate about whether vaccines cause autism and new information seems to be added to that debate every day. The problem is that people are looking for a single solution. Yes, vaccines probably can cause autism, but most likely this is only the cause in a small number of children. And even if it is vaccines, it is more than likely the mercury content in those vaccines. So really mercury poisoning is to blame, not autism.

Then, once you get past all the causes of autism, what is to blame for the hard things that come with autism?

Things like self injurious behaviors aren’t really from autism as much as they are from other things that interfere with autism. For example, a child could self injure because they have a medical problem causing them pain and are either trying to communicate that problem or trying to distract themselves from that pain. Or they could self injure because it focuses their attention on something tangible rather than the intangible anxiety or uncomfortableness of their environment. So in those cases, medical problems or anxiety are to blame.

When it comes to not being able to make friends or being bullied because you have autism, shouldn’t it be society and our skewed ideals that are to blame? If we valued people despite their disabilities or differences, these problems wouldn’t be so prevalent.

 

What I’m trying to say is that blaming autism isn’t always the most beneficial or correct thing to do. Some things are autism, but some things aren’t. Blaming autism for everything that’s hard or any time something goes wrong leads children and adults to believe that they’re broken. It leads people with autism to feel damaged, unworthy, not good enough. Because even when we can hide our autism and blend in, sometimes we still feel autistic and if being autistic is equated with everything negative, it’s easy to extrapolate that to yourself. Then we become broken people and even if you’re a broken person, you still don’t want to feel broken…

Blaming the Cheese- Part 1

I think sometimes we fear the wrong thing or we blame the wrong thing or we try to fix the wrong thing. I have a hard time understanding why people blame autism for the hard things that happen to them or their kids. I mean, is it really autism itself that’s the problem or is it something different? For example, if you almost died from eating a piece of cheese because you are allergic to it and didn’t know, you might be tempted to blame the cheese. After all, the cheese is what caused the allergic reaction. The real problem though isn’t the cheese, it’s the allergy. Cheese is delicious and fairly healthy for most people, but if you’re allergic to it then it can be a problem.

So my question is “Is autism really the problem or is it something else?”

A Different Outcome

As I learn more and more about autism and therapy- past and present, I’ve looked at how I grew up and how different it might have been had I been in different therapies. I was only in therapy specifically for autism once. It was play therapy and I didn’t see the point of it, so I stopped going. Other than that, my therapy consisted of the school speech therapist and the occasional psychologist.

Now when I say this I’m not saying that this is the ideal path for everyone with autism, but it worked for me. Although I think some additional therapy might have helped with certain things, I am at the age now where I can form my own therapy and work on things that I specifically need help with.

On the other hand, I look at some therapies used in the past and I am very glad that I was not involved in those therapies. I look at stories and videos of children having meltdowns and exhibiting self injurious behavior and I think that could have been me if I had been in a different situation. If people had tried to restrain me from being autistic, if people had tried to pressure me into situations I was uncomfortable with, if people had forced me into the mold they wanted to see, I think I would have had a lot more problems. I could see myself responding to those types of things with anger, aggression, meltdowns, self injury, and even hate and dissociation.

I have a very strong personality and I respond very negatively when people try to change my thought process or emotions. I need to change my own thoughts and emotions. Sometimes with help, and sometimes on my own. If someone tries to force me to change though, it usually makes my behavior worse.

I was very lucky to have grown up in a house where I was allowed to process things at my own speed and find my own way of responding to things. I was lucky to not have been put in a therapy setting where I was forced to comply to demands that I would have negatively reacted to. I was lucky to be challenged to grow within my own realm instead of being forced into a different world that I did not yet understand and pressured to grow there. I was very lucky.

I didn’t start researching autism until I became an adult and learned about autism in my college classes. I had no need to research autism before that. I had no need to understand autism. The only thing I was worried about understanding before that was myself and the world around me. And I am grateful that I didn’t worry about autism back then because it’s a lot to handle. All the information and stories and articles and studies and blogs and comments and videos are a lot to handle. Knowing you have autism is one thing, but knowing autism is something completely different.

Now that I know autism better I am so grateful that my family didn’t treat me as autistic. I am grateful that my diagnosis didn’t change my life. I am grateful that I was able to develop in the way I needed to in order to become the person I am today. And I only hope that others will be as lucky as I was.

The Act of Normal

I’ve been reading a lot of posts lately about people saying that they’ve been told that they couldn’t have autism because they seemed too normal or well-adapted. I’ve been thinking about this in regards to my life. I’ve had lots of people tell me that they never would have guessed that I have autism. My response to this is usually something along the lines of I’m glad that my act is working.

I try very hard to appear normal. I think this is partly because I want people to see that people with autism aren’t all that different from themselves and partly because I’d rather keep my autistic side hidden away in a place only I can see and experience. Autism is like my hidden secret, my hidden world. It’s like when you want to keep all the chocolates to yourself so you hide them under the bed and only savor them when you know that no one else will know about it. I love my autism and doing autistic things because it’s natural. It’s freedom. And I don’t want that freedom changed by the world so I keep it to myself.

Now this may seem somewhat contradicting, but I am actually very open about my autism. It’s hard to be on my facebook and not see that I have autism. And I’ll tell people I have autism if the topic comes up. The secret hidden things though are the actual autistic behaviors that I exhibit.

Talking about them, such as on this blog, makes them almost less real and more like abstract concepts that we try to analyze and understand. However, seeing them makes them real and tangible and they become a problem to those around me. That’s why I try so hard to make my autism as abstract and distant as possible. The more distant my autism seems, the less people see my autism as a problem and the more autistic I can actually stay.

Hiding my most autistic traits is something that comes automatically to me. No one, not even my family, has seen my hands flap. No one has seen me so uncomfortable that I want to wriggle out of my body. People have seen me twist my hands or scratch myself or shift in my chair and a couple times certain people have seen me cry, but in general people have only seen what I deemed appropriate for them to see. They’ve seen what I felt was ok for them to see based on our relationship and their therapeutic role or work position.

Even if I were to try to show my hidden autistic traits to someone, it would be impossible to do so. I literally cannot do certain things in front of people. My body just wouldn’t allow itself to. Instead, I do the socially appropriate things and deal with the uncomfortableness of holding things in until I can be alone and get things out.

When I am alone, I can be whoever I want to be without worrying about whether it is the “right” thing to do or not. By hiding my autism from those who might try to squash it, I preserve the beauty of it. I love jumping for joy when I’m alone or smiling so much that I feel like my happiness will burst out of me or flapping my arms because I’m excited or simply glorying in the textures of the world around me. I even pretend sometimes to have conversations with people that I could never have in real life. I can work out my frustrations easily because there are no pressures to work them out in the way other people want me to.

And so, the act is not only to try to reduce stereotypes, but also to preserve the beauty that I see my autism to be.

So when someone says, “you seem so normal” or “I never would have guessed” or “wow, I’m surprised”, I secretly cheer inside because my act is working.

Learning about Autism

The making of this blog has caused me to look into autism a lot more than I ever had before. Although I have been curious from time to time about what autism is and how it affects me, I had never really researched examples of autism or specific traits people with autism tend to exhibit. I majored in Psychology and took classes that talked about autism so I knew the DSM-IV diagnosis and the criteria to fit that diagnosis, but until recently I never realized how much of my life was affected by autism and how symptoms of autism manifest themselves in real life.

It is sometimes hard to learn about autism. There are a lot of things that pertain to me and a lot of things that don’t, but that can be hard to hear anyway. It’s sometimes difficult to realize that I’m bad at something because of autism. It just makes me realize (or perhaps remember) that I’m different, which isn’t always something I like to be reminded of. It’s also sometimes hard to learn about autism because then I realize that I struggle with something that perhaps I didn’t realize I struggled with before. It’s like if someone pointed out a flaw to you that you never realized you did and then you’re somewhat subconscious of doing it after that.

I also have so many unanswered questions. No matter how much I learn about autism, there are things I don’t know or don’t understand about both autism and everything else. I wish that I had people that I could ask some of these questions, but how can you ask something no one has ever asked before when you already have problems asking questions that are asked every day? I know that my parents are willing to answer any question I may have, but some questions just need to be answered by friends (which is also another problem for someone with autism).

Anyway, maybe one day my questions will be answered or I will find a way to answer them myself. I also sometimes wonder if people without autism have questions about what is normal and what is not. I can always look to autism websites to find out some things that are not normal, but where does one look to find out things that are normal?