Jackson Skane is a youth ambassador to Northeast Arc’s Board of Directors and an autism advocate. In the latest entry in his blog series, Jackson writes about the stigma he has faced around autism, and shares what advocates can learn from his experiences.
Stigma is a strong word, but it is something I and many other people have to fight daily. While many people would say that I do not fight stigma to this day, that is untrue. Even now, I am always pushing myself to prove who I am to people while also voicing my struggles. In this blog post, I will be discussing my journey with fighting stigma as an individual with autism and providing tips to combat these stigmas.
High-functioning vs. Low-Functioning
Throughout my life, I have been described as having both high-functioning and low-functioning autism. As a toddler, I was often described as being low-functioning because I was non-verbal and did not know how to interact with people as well as how to act in public. Once I got older, people would refer to me as high-functioning because I started to speak more and needed less social and behavior services.
As much as I know people don’t mean to be offensive with using these terms, they can really diminish people with autism. By using the term high-functioning, it diminishes someone’s struggles. However, using the term low-functioning diminishes someone’s strengths. This is something I have recently learned but I agree with the statement 100%. Even though people consider me “high-functioning” I still have struggles and still deserve to have those supported and recognized.
Autistic People Do Not Want to Socialize
As a kid, this was one of the hardest things I had to grapple with. On a daily basis, adults always seemed afraid to talk to me and kids never wanted to play with me. Socializing was a struggle of mine but many people don’t understand that people with autism want to socialize, they just may not know how to show it. I can remember so many times where kids would come up to my parents at the park and ask, “Why won’t he talk?” My parents would always explain to kids that I just didn’t know how to interact, but that I did want to play with them.
Of course, for kids at a young age, they did not understand what my parents meant. But even as I got older, other kids would ignore me and would not include me. This led to me being left out of many friendship opportunities and I only had two friends for my first three years from kindergarten to second grade. Finally, in third grade I was able to make more friends because I started to go up to students and talk to them. One thing I would like you all to take away is that sometimes you may have to be the person to go up to that individual with autism. If they do not come up to you, it does not necessarily mean they do not want to talk to you, but instead, they may not know how to be the first person to interact.
‘You Do Not Look Autistic’
This is one stigma that I fight through to this day. This stigma is very real and is one of the most common ones people with autism have to go through. Usually, any time I share with someone that I have autism, they will say “Wow, you do not look autistic.” As much as I know people do not mean to be intentionally mean, it actually really hurts me. When I have people saying this to me, it deeply offends me and makes me wonder what being autistic “looks like” to them.
I always have to explain to anyone who says this that there is no specific look to having autism, let alone any disability. This is something that has definitely taken me time to master at understanding. While at first it made me more visibly upset, I have learned that instead of overreacting, I can instead educate people who say that.
‘Getting Rid of Autism’
Many people who are not aware of autism believe it is something that can just go away, but that is far from the truth. For example, although I am not the same non-verbal kid I was when I was younger, that does not mean I have gotten rid of my autism. I have just received many services throughout my life and still do that help me on a daily basis.
When people ask if my autism has gone away it stings because it makes me feel like I am just a disorder in their mind. When people ask if my autism will go away, it makes me wonder if they do not like me for me. Of course, autism is a disability but it makes me who I am and I would not want that to change.
Always Needing Help
Whenever I meet someone and I tell them I am autistic, their whole mood changes. Especially in my schooling years up to college, the teachers would be a lot nicer to me than other students but would also come up to me constantly during class. As much as I appreciated the help, I didn’t like standing out as a helpless student. There were times I would need help, but not at all times like my teachers would always assume.
This has been a challenge throughout much of my life and is something that still happens quite frequently. I understand that people only want the best for me, but people with disabilities want that independence as well. I have even talked to my peers at college who also have disabilities and they have been through the same stigma as well. Therefore, people with autism and disabilities will ask you when they need help and do not want it at all times.
Talking Down
Additionally, not only do people try to help more than I need, people will talk down to me. This is one reason why I do not like when people find out I have autism before they meet me. Especially adults who will introduce themselves to me and will completely change their tone of voice and wording when talking to me compared to my sister and other peers my age. It deeply saddens me because I wish people would take the chance to get to know me before they assume that I cannot understand them.
One example that still comes to mind is when I was in my technical program in my high school. My teachers were not the problem, but instead, it was one of my classmates. Anytime she would come up to me, she would always use a baby voice and talk down to me. I had never really noticed it much until one of my friends talked to me about it and how it bothered them. Luckily, once the girl got to know me, she stopped talking down to me. While this did make me feel better, I did wish she got to know me first before labeling me by my disability. A tip I would give to anyone trying to navigate getting to meet someone with a disability is taking the time to meet them first and see where they are rather than jumping to the conclusion of talking down to that individual.
Needing To Live with Your Family
This is the last stigma I will be discussing because it is one I have recently broken through. The first time I ever experienced this was when I was in my high school Individualized Education Program (IEP) meeting freshman year. The special education chairperson had asked me, “Are you going to live on your own or with your family?” I then explained what my goals in life were and how I planned on living alone after I graduate college. Immediately after, the woman went, “Are you sure about that?” At that moment, I felt frozen in time and could not believe she said that. How could someone who just met me assume I cannot live on my own.
Looking back now, I understand the woman had to ask that, but the way she responded was completely inappropriate. While there may be individuals with disabilities who want to live with their parents, there are also ones who want the chance to live independently. As supporters of the disability community, it is extremely important to always support those hopes and dreams of the individuals. Even now, I am in my first year of college and I have been living in a dorm at college instead of commuting from home. Many may wonder, “Was he nervous at first?” The answer is “of course” but anyone would be. Living on your own for the first time is something you have to adjust to, but it does not mean it isn’t possible.
Conclusion
Stigma is something that not only people with disabilities face, but something everyone faces and can even occur on a daily basis. It is important that as learners we are able to understand the stigmas surrounding different topics, and especially ones like disabilities. I hope you all could learn about some of the stigmas people with disabilities have to face, but also know that every individual with a disability has different stigmas they are fighting. Mine today are just based on my experiences and that is why I advise you all to get to know the people with disabilities around you better and ask them about the stigmas they go through. As always, please feel free to reach out to me at jacksonskane@gmail.com and tell me what you thought about this blog post.