Autism Acceptance

April is Autism Awareness month. But from what I’ve seen we have awareness of autism. People know the prevalence numbers. They have some sort of idea of what autism is (whether that idea is accurate or not is a different story). So really this should be autism education month. I say autism education because acceptance is not likely to occur any time soon and I don’t see awareness as a current issue.

So… if I don’t believe that autism acceptance is a likely possibility, why did I title this post autism acceptance? – Mostly because that’s still the ideal.

It might sound silly, but I think of Martin Luther King Jr’s “I Have a Dream” speech. He talked about acceptance of different races and ethnicities and skin colors when it was not a likely possibility. And even though the world isn’t completely color-blind yet and we still have discrimination to some extent, it’s gotten a lot closer to racial acceptance.

So that is my dream- not racial acceptance, of course, but autism acceptance. I know it’s not likely to happen, but maybe one day it will be a lot better. And I do realize that things have gotten better already. We’re not at the point we were 20 years ago. Still though, I hope that one day it will be easier to have autism in this world where being different can be seen as such a negative thing.

He flapped

So far I am the only one in my family and extended family that has been diagnosed with autism. We sometimes speculate if a couple other family members have autism, but nothing has ever come of that. So basically… I’m all alone when it comes to trying to figure out what autism means and how to deal with it. I know my parents tried to learn about autism when I was younger so they could help me out more, but learning about it when you have autism is completely different than learning about it when you don’t.

When you learn about autism and don’t have it, you’re seeking understanding and perspective. When you’re learning about autism and do have it, you’re seeking to understand yourself, but you’re also seeking for validation. The quest to learn about autism isn’t just for understanding- it’s to figure out if you really are as alone as you feel.

I decided to learn about autism because I wanted to be proven wrong. I wanted to learn if I really was broken or if I am just different. And the more I have learned about autism, the more I have realized that I’m not as broken as I used to think I was. I’ve learned that autism isn’t something I should be ashamed of. I’ve learned that autism makes me different- not less.

One of my biggest questions since starting this journey of learning about autism is how much of me is different because of autism. What are things that people with autism do that people without autism never do? Or is it simply that we do the same behavior only we vary on whether we do it longer or more often?

Anyway, the reason for this post is that I finally had some sort of answer to one of these questions. I have often wondered, do people without autism ever flap or ever want to flap? I still don’t know the answer to this question, but… the other day my nephew flapped.

It was only for a split second. But… he flapped…

And my heart stopped for that split second… not because I was worried that he could have autism, but because I was finally not so alone.

I don’t know what it means that he flapped. I don’t know if that means that it’s normal for little kids to flap or if that means he has a little bit of autism. But for now it just means that I’m not so broken.

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.

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.