So many times I have been treated differently because people have heard the word autism associated with me. Sometimes people even treat me like they would a child—speaking in a soft slow voice, or poking me over and over again, or behaving in some other sort of way that they never would with any other adult. Or they seem baffled by the fact that I don’t act like their child. The reason is because, as with most people, I am different than I was as a child and different from a child in general. I am a 27-year-old adult who tries to act like one.
I can understand why people associate children with autism. Most organizations, information, infographics, and so many other things associated with autism are geared toward parents of children with autism. This makes it seem like they’re the dominant group, or that this is how it must be for everyone on the spectrum. But we are hearing only one part of the story.
Now there are groups that deal with adults, but they can be less prominently known. The Autistic Self-Advocacy Network has about 18,000 likes on its Facebook page, while the Thinking Person’s Guide to Autism has about 140,000 likes on Facebook. These numbers are dwarfed by autism parents’ networks like the largest autism organization, Autism Speaks, which reaches 1.5 million people, or another parent-based site, Autism Awareness, which reaches 1.9 million people.
Most organizations, information, infographics, and so many other things associated with autism are geared toward parents of children with autism. This makes it seem like they’re the dominant group.
The Autism Awareness Facebook page shows a video of a raccoon laying on a dog, a story of a mom who was heartbroken because no one showed up to her son’s birthday party, an article about a sensory-sensitive theater, selling of jewelry and other items with autism themes, a story on a child prodigy who is proud to be on the spectrum, and a group of young men with Asperger’s running around in superhero outfits doing comedy. If this were a person’s only interaction with people with autism I can see how they get the autistic-person-as-child worldview. But that is because they are only seeing part of the picture.
I personally, and a lot of people I know, are high-functioning, and live rather normal lives. A lot of people will not disclose being on the spectrum because they do not want to be associated with some of the things from the paragraph above, along with the rest of the negative stigma on autism. I myself still have very many points where people treat me like a child, talk to me like a child, and are surprised by the way I act, instead of the way they see people with autism portrayed. I will admit I was not always the way I am. Some of these people have known me for some time or have seen me mature, but their view of me has not. I am very different as I am now, an adult, than I was as a child, a teen, or a younger adult. I will be different when I am a middle-aged adult, and a senior citizen. This is true for everyone—on the spectrum or not.
I will be honest—I grew up delayed. I didn’t walk or talk, or read, or ride a bike or drive, or do most things in life at the same time many of my peers did. But just because I was delayed doesn’t mean I can’t learn or catch up. For example, when I learned to walk, I started to run right away. When I talked, I talked in full sentences from the start. This is true for everyone—just because we can’t do something at first or are bad at it, doesn’t mean we can’t get better. Albert Einstein is said to have failed math but is now known as the greatest theoretical physicist since Newton. I did have more trouble dealing with sensory overload and anxiety but I learned to deal with them the best I can. When you are a child, you are learning so many different things and maturing so quickly it is sometimes overwhelming to learn about some other thing too, but as you grow, you start to learn how to work with what you have.
Some of what people might have thought was my autism back then was simply my being a child. Children can be a bit self-centered or have trouble with impulse control. This can be harder to manage when you have less control of the world around you but again, you grow and mature, and you learn strategies. When you are a younger person with autism, you have communication challenges—either with actually saying the words or finding the right words to say. But this can be true for any child. Who hasn’t watched Kids Say the Darndest Things? That is basically the whole premise of the show. But as you grow older you can learn how to express what you mean in more efficient and effective ways.
We deserve to be treated as we are—adults who just happen to be on the spectrum.
Finally, I think there is also a misguided assumption that kids with autism and even adults with autism are okay with not having friends, or even only want friends who are on the spectrum. Sometimes it is hard to make friends as a child on the spectrum, and as an adult. Some of this is because those of us on the spectrum are trying to learn how to read other people, which can be difficult, but can also get easier. Some of it can be because you don’t have the confidence yet. It is an understandable thing for people who just want friends on the spectrum. They tell me it is safer; they can feel more comfortable around them, and not have to explain why they do certain things. I can completely understand this, as I have a bit of a hard time making friends due to a fear that I stink at social skills, or that people will make fun of me for some weird things I might do. I have to gain the confidence that I can relate. You might ask, “Why not just hang out with people other people on the spectrum?” And the answer is, I do, if they’re someone I can talk to or relate to, but that is not always the case. I want to be friends with people who like big ideas, but can also talk about anything. This is what I want from any person—on the spectrum, neurotypical, or whatever else in between.
We should all have the friends we want, not just the friends people think we deserve or we believe are the only people who will be friends with us. We deserve to be treated as we are—adults who just happen to be on the spectrum.
Founder of Jason’s Connection – an online resource for those with disabilities, mental health, aging and other needs. Jason was awarded an M.S. in Cultural Foundations of Education and Advanced Certificate in Disability Studies from Syracuse University. Jason is also a Project Coordinator and Research Associate at the Burton Blatt Institute, an international think tank for Disability Rights and Human Justice at Syracuse University. He regularly contributes to the blog in his own series called Jason’s View and travels the country consulting and speaking about disability issues and rights. To read more from Jason Harris, read Jason's View.