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…

SensoryBlogHopNew

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.