The Cure for Autism

It is amazing to me how much things can change in a year. With everything that has happened this year, I feel like much more time has passed. I look back at who I was 10 years ago and laugh at my selfishness and childish thoughts. I wonder how anyone put up with my whining and shortsighted views. I look back 5 years ago and am amazed at how much I have grown since then. I look back at two years ago and can hardly believe the healing and help and hope that has come into my life since then.

Two years ago, I posted about how I wanted to experience friendship like the love I had for others. I wanted to learn to love better and to love myself. I had grown to be strong and intelligent, resilient to the trials life would bring, but I was haunted by loneliness. Loneliness was a familiar friend, and many nights were spent in the deepest despair of want for human interaction.

I am not lonely anymore. That is the most beautiful statement in the world. I do not feel lonely anymore. I never thought this was possible for me. For so many years, I longed for a single person to see me and want to be more than a situational friend. It wasn’t until college that I felt like I had friends outside of church or school or activities. At that time, I was still getting used to the idea of having friends, and I messed up more times than I care to relate. But a little over two years ago, I started to really feel wanted. I started to have people I could call friends. I started to believe in hope.

I feel so blessed. I have felt love beyond my capacity to comprehend. I feel wanted, needed, important, and safe- most of all, safe. Two years ago, I was terrified of everything I was doing. I was stepping out of my comfort zone and talking to people that I had no idea how to communicate with and doing things for others that scared me almost to death. Every day felt like walking around with my heart in my hands, hoping that it wouldn’t get crushed along the way.

But those sleepless nights and silent tears and debilitating anxiety led to the most wonderful friends a person could imagine. All my loneliness, all my pain and suffering, seem like nothing now compared to the love and protection I feel. I feel overflowing gratitude for my friends and for all that I have learned. I feel healed, whole, loved.

I can text someone when I want to talk. I can say hello to someone I recognize when I see them in a store or on the street. I can ask for help. I can tell people how I feel without feeling awkward or out of place. I can hug people or let someone give me a massage. I can relax. I can be myself.

No one knows how far I have come, but it is impossible for anyone to miss the progress I have made. Everyone who knew me before can see how I have changed. We talk about milestones in autism- being able to talk, looking someone in the eye, communicating a need, but the most important milestones are the ones that make you want to be you.

I learned how to do everything I was supposed to do at an early age. I analyzed people to the point where I knew how to appear normal. No one would guess that I have autism, unless it was one of those rare moments when I made a mistake. But despite my capacity to fit in, I could never find the capability to belong.

My milestones are hope, love, and belonging. If there is a “cure” for autism, this is it- hope, love, and belonging. All I ever wanted was to feel like I have a place in this world. I wanted to feel like I belong, that I am wanted here. I wanted to feel like autism wasn’t a wall that kept out love. You want to find the cure for autism? This is it- love, accept, embrace, help. After that, everything else will just fall into place.

Just Starting

I have been writing this blog for a long time. I have been living with autism (aspergers) for a long time. I have been learning how to seem normal for a long time.

What I haven’t been doing for a long time is learning how to be autistic.

It might seem strange that I would need to learn to be autistic since I have autism, but it’s the reality. I have learned to suppress everything that comes natural to me. I have learned not to stim in public, not to have special interests or at least not talk about them like I want to, not to have meltdowns around others.

And in all non-autistic circles, this is all a great success. I am high functioning. I am as close as you come to “cured”.

But… In autistic circles, I feel like a failure or at least a novice. I don’t know how to allow myself to be autistic. I don’t know how to be comfortable with being autistic. I don’t know if I even want to be autistic.

Is there a middle ground? Can I be autistic and normal and different and perfectly me all at the same time? Do I have to choose between living an autistic life or living a lie? Is that even what the choices are?

Like I said, I’m just starting to learn how to be autistic. But it is overwhelming sometimes. I thought learning about autism would make me feel less alone, but in some ways I have felt more alone.

I’m just starting… Just starting to try to find my place in the world. Please be patient. Please be kind. I don’t know where I’m going and I’m just starting a journey to a destination that I’m not even sure exists.

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.

What I want

As someone on the autism spectrum, these are the things I want people to understand about autism and the things I want done to help. 

1. I want people to understand that autism is not a disease. — I have a hard time with certain words that people use in reference to autism. The words that come to mind right now are fix, cure, disease, and hopeless. I want people to understand that autism is not a disease and therefore is treated, not cured. Autism is a disorder. You wouldn’t say let’s cure dyslexia or let’s cure Down syndrome. So why would you say let’s cure autism?

2. I also want people to understand that things are never hopeless. — Earlier this week I read a very well-composed and thoughtful letter written by someone with Down syndrome. Now, I don’t know about everyone else, but to me Down syndrome seems like a lot more debilitating of a diagnosis than autism. So if someone with Down syndrome can live on their own with minimal assistance and have a job and participate in olympics and read and write, then why are people so devastated by autism?

3. I want people to help. — I don’t want a cure, I want help. I don’t want to be rid of autism, I just want to be able to understand the world around me. I want people to understand that I can’t do everything and sometimes I need more time to do things or better guidance in how to do things.

4. I want people to forgive. — I know that sometimes I come across as harsh or unkind when I feel like I’m only being honest. I know that sometimes I do things that are socially inappropriate without meaning to do them. I know that I act strange sometimes and people wonder what’s wrong with me. In these times I don’t expect people to always understand, but I want them to forgive.

5. I want friends. Autism is so much easier to handle with friends that understand and are willing to help. Life in general is so much easier with friends. Making friends is not easy for someone with autism. It’s hard to figure out how to talk to people and then once you have talked to them it’s hard to figure out whether or not they’re your friend.

6. I want awareness. I want people to understand that not everyone is the same. Autism is a disorder that affects a large amount of people and there are a lot of other disorders out there as well. I want people to not be so afraid of differences and to be willing to accept people for who they are and how they are.

Poem/ Commentary

This is a note that I originally posted on my facebook page and decided to share here as well.

It hasn’t been easy

It hasn’t been easy for me growing up with autism.

It hasn’t been easy for me not having any close friends.

It hasn’t been easy for me not being able to say hi to people I know.

It hasn’t been easy for me trying to talk to people that probably don’t even know I exist.

It hasn’t been easy for me trying to fit in when I have no idea how.

It hasn’t been easy for me trying to understand what people want from me.

It hasn’t been easy for me trying to be myself when everything tells me I should be someone else.

It hasn’t been easy for me being different.

Autism is never easy, but we try to make it work anyway because in the end it’s all we’ve got.

There’s all this stuff out there that says let’s find a cure for autism or donate to help cure autism, etc.

To be honest, I don’t think you can cure autism. I don’t think it’s a disease. It’s not like cancer or aids or anything like that. It’s not something that will kill you or make it so you have to be on bed rest all the time. Autism is just how we think. It’s how we process information. It’s how we see the world.

Even if there was a “cure” for autism, I wouldn’t want it. Yeah, having autism sucks and not being like everyone else, not thinking like everyone else is hard sometimes, but it’s who I am. I couldn’t imagine myself without autism because I just wouldn’t be me anymore. I know I’m not the easiest person to be around and I don’t make friends very easily and I don’t know what to say sometimes and I don’t know how to start conversations, but without all that I’d just be like everyone else. I’m not sure I can handle being like everyone else.

I used to think that if I didn’t have autism my life would be great. I thought that I wouldn’t have any problems and that I’d have lots of friends and never be lonely. But since then I’ve realized that my life is great. I may not have lots of friends, but not everyone does. Everyone has problems and we all get lonely at times. So really, not having autism would just make me someone else who sees the world like everyone else. I like seeing the world differently. I like being me.

So… go put your money into a cure for cancer or aids or heart disease- us autism people will be fine =)

Living with autism

For a long time I thought I was basically “cured” of autism, but now I realize that I’m not cured and never will be cured. Autism is a way of life and even though I learn the norms and expectations, I still don’t have the adapting skill that others have. More specifically, I realized that I plan my interactions. I practice my communications and when I am thrown into situations that I am unfamiliar with I often stumble and am unable to recover at the time. I usually think about these conversations later and come up with ways that I could have responded that would have been socially acceptable instead of the awkwardness that ended the conversation.

I feel that people think of me as a regular person. They do not see me as someone with autism because I don’t portray myself in that way, but inside I still do have autism. Every day is harder for me than for the average person in my interactions. I have to try harder to understand the communications of those around me and try harder to make sure I am understood in the way I intend to be understood. My autism may seem invisible to others, but I still feel it. I may make living with autism look easy, but the truth is that it is as hard now as ever before.