Every day I have to function in two different realities. There is my everyday reality. It is a world full of deadlines, schedules, and demands. It is loud and confusing. There are so many rules, and very few of them actually make any sense.
Then there is my native reality. It is the place where everything comes easy. In this reality people can communicate without any language and still understand each other. Here everyone is smart, even if it isn’t apparent. However, it is a place I only get to visit, to retreat to when I have no other demands or if the world gets to be so much that I just cannot take it anymore.
I think this is why many individuals with autism say autism is good and it is the world that has the problem. I have a different perspective. My perspective is unique because I see autism from so many different angles.
I am autistic. I know what it is like to grow up unable to communicate to the world. I understand the inability to vocalize what is in my head. I was bullied, misunderstood, and spent my childhood not fitting into any mold.
I am also the mother of two children on the spectrum. I have a teenage son and a pre-teen daughter who both have Asperger’s and ADHD. I have navigated the world of autism as both a mother of a boy and a girl on the spectrum. They are two very different worlds.
I also have a professional background in autism. I have a BA in psychology and an MS in Applied Developmental Psychology. I finished my master’s with a thesis on autism and continued on to work as an ABA therapist helping children with autism.
I do not believe autism is bad, but I also do not believe it is realistic to expect the world to change for individuals with autism. I love the autism world. I love escaping into my obsession. It is peaceful and easy. I do not have to work hard to interact with other individuals with autism. We speak the same language – the language of autism. I have on many occasions “translated” for children with autism to their neurotypical parents and/or teachers. It is a language I know how to read without trying. It is my language.
Yet it is not the world I get to live in. The reality is I have to navigate the neurotypical world to provide for my children. I have to advocate for their needs. I had to obtain an education and get a job. I cannot walk out of my job because of social interactions. I have to live in the neurotypical world even if it is not my native world.
I would not give up being autistic. I see the world in a way that is different from my neurotypical peers. It helps to manage the complex nature of my job. I also do not think I could have the patience to raise my children if I was not autistic. I have the understanding to know what they are experiencing, as well as the ability to not react until a situation has passed. This skill has grown as I have aged, but it is a skill that comes with being autistic.
Yet what I wouldn’t give to be able to go one day without having to work at everything. I would love to have something come easily. I would love to not have to talk through every interaction to see where I screwed up and why the other person is looking at me like they do not understand me at all (or maybe I am just reading them wrong… again).
Then there is seeing my children struggle. Being autistic and an adult is hard. Being autistic and a child is next to impossible. Everyone expects you to function like you are neurotypical (even if they know you are not), yet you do not have the skills to do so.
I think the autistic community has a lot in common with the Deaf community, in terms of culture. In both cultures you can be the only member of your family that belongs to the community. It can leave you even more alone and isolated. You have to weave in and out of cultures wondering where you truly belong, or if you belong anywhere.
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