I Am Autism?

The buzz around the interwebs these days is this idea of whether or not autism "identifies" people. Am I autism? Or do I only "have" autism? Both those with autism, and those with children who have autism have weighed in on this, and it seems that there is a division between those two groups as well. Having autism and not having it but having a child with it makes a difference. Having a child with autism is not the same as having autism.

There are a lot of writers and video blog posters who have said it better than I probably will, but I am going to do my best to try anyway. 

I am diagnosed with autism (aspergers). I am fairly certain that my son also has autism (aspergers). I am as certain about his having it as I was about me. I've seen it inside and out and backwards and forwards. 

First I will give my perspective as someone WITH autism, since that came first. My perspective on this is that I have autism, and that autism is a HUGE part of me. I would go as far as to say that I am autism. It is me and I am it. There is no separating my autistic parts from who I am as a person, and who I am as a human. Everything about who I am today is a direct result of my autism. There is no cure, there is no erasing autism from who I am. It is there, and it is absolutely impossible to remove and separate from me to show the non-autistic parts. Autism = me and I = autism.

As a parent, I can understand the temptation to reject autism as being a permanent part of our children. After all, our children face a lot of struggles and difficulties, and we want to protect them from that, or cure them from that. We want our kids to be "like" other kids, and not have to struggle or be hurt.

 In addition to that instinctive parenting feeling, the majority of the thinking about and around autism is that it is a pretty negative, grim situation to be in. No matter what our progess thus far on disabilities not stopping anyone from doing anything they set their mind to, having autism in any way seems to imply to people that it is a difficult and disabling disorder. There are all these negative terms involved, like disability, disorder, social inadequacy, inability to speak or otherwise relate to others, and that we are only introverted people who ignore the presence of others and live in their own little world. 

Parents, if you are not autistic, remember that you still cannot speak for how your child feels about autism. Even I myself have had people seem to discount my diagnosis, as if there are separate parts of me that are "normal" and parts of me that are "not normal = autistic", and that I'm "fine", or just like everybody else. This thinking is offensive to me because I know myself, and I am not "fine" or just like everybody else. I am not a separate person from the autism parts of me. Even the professional who conducted my testing wasn't fully convinced that I was autistic, but when we went through the testing, she was completely blown away by the obvious and clear results on the autism test itself. 

Thinking back on my life as a whole to this point, I cannot determine any piece of my life that isn't somehow touched or affected by autism.

If I removed the social difficulties that I struggled with as a child, who would I be? Would I have grown up the outsider, loner? As a result, would I have turned to my teachers as my friends, and reached for a higher standard of behavior because I was trying harder to relate to them than my peers? Would I have been the kind of person who stood by what was right, or would I have bent to the popularity contests? Would I have been the kind of kid willing to wear what I was bought instead of working and buying clothes that are 4 times as much but last 1/4 as long? Would I have grown up to be an adult with a strong and passionate sense of right and wrong, or would I be trying to keep living up to the popularity contest that still rules in my hometown? Who would I be without that social difficulty? I may not be someone with lots of friends, but I have a very strong sense of self, and I'm not convinced that I would have gotten that without being a bit separate from everyone else my whole life, attaining to the higher standard of my teachers instead of my peers. 

If I could remove the part of me that is a bit obsessive, would I be the passionate, informed person that I am? Would I be someone who feels so strongly about a decision because I spent hours researching it, or would I just accept what someone else told me and end up unhappy because their outcome is not one I would have chosen if I had all the information? If I hadn't been obsessed with pregnancy and birth, would I have taken in thousands of pages of information and experiences to empower me to have two beautiful and perfect completely natural and fast births? Would I have been able to even deal with a high needs baby who was tongue and lip tied (though we are only now finding that out and he's 7)? Would I have continued to breastfeed even when it was uncomfortable and frequent? If I didn't obsess over the information and obsess over how good it is and how much I disliked the alternatives, would I have kept at it? I'm not certain. Taking away everything I know is related to my autism takes away everything that I value about myself. Taking away the struggles would mean I would have turned out to be a very different person.

(I realize that people can do the things I have done without autism, but I'm not talking about people in general, I'm talking about me personally and specifically.)

Therefore, I am autism. Autism is me. You can't say I'm autistic, and that I'm normal. I am most definitely NOT "normal" in relation to the world. 

I will also add my religious faith based perspective as well. I do not believe God makes mistakes. I do not believe that God creates children to be born with different abilities without a reason. I do not believe that all the struggles aren't for a purpose.

In John 9, Jesus heals a man who was born blind. The story goes like this: 

 As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him."

I may be 31 years old, and I may not really know or understand what works of God will be displayed in me, or what works of God have been displayed in me. I may not completely understand what my specific gift is and how autism plays into that, but I do know that it does. There is a reason. Even if clinging to God out of pure stubbornness to NOT believe is the only reason, it is enough. Autism isn't a disease, or a condition that I have to endure. It is how my brain works, it is who I am, and how I became who I am.

There is not a whole lot we can do about people who are dead and gone, but looking back on the past, many researchers say that people like Einstein or Thomas Jefferson were likely autistic. Famous inventors, musicians, composers, and artists, as well as today's technology geniuses have a lot of the characteristics and symptoms of autism. These people changed and are changing the world, and they are the ones who were obsessive enough to do it. Would you have failed hundreds of times and kept going? Would you have dropped out of school but still rocked the world? Would you spend every waking moment working on your thoughts, ideas and inventions? Would you be able to go for weeks and months working on a project at the expense of your social life? If you look at it that way, it seems having a successful social life would be a bad thing when it comes to inventing and creating. You have to be so obsessed that you wouldn't even be able to sleep until you've completed what you're trying to do.

So, for those of you who aren't autistic, think about this. For those of you who have a child or other family member or friend with autism, consider what you believe about this, and why. More importantly, consider how people who have autism feel about it, including your child or family member or friend. Be aware of what you say and how you react to their feelings on it, because saying that their autism isn't a part of who they are may very well be the same as saying that the way your brain works isn't a part of who you are. It's like saying that how you think and understand things doesn't have an effect over who you are. Don't reject our feelings to comfort yourself. It's not about you, it's just who I am.

Autism is who I am. I have autism. I am autism.