As a continuation of the series “Ask an Autistic Person,” today’s interview comes from a self-diagnosed person with Asperger’s Syndrome who goes by the name “Music Lover.” In the interview, Music Lover talks about the myths of autism and the reality of what it feels like to have high functioning autism.
An Honest Interview: Debunking the Myths of Autism
At what age were you diagnosed with autism and how did the diagnosis come about? I self-diagnosed myself in middle age as having Asperger’s Syndrome. I always knew that I was different and suffered internally with connecting to the outside world. It helps that I studied medicine to help me figure this all out. I felt a great sense of relief when I was able to pinpoint and admit to myself that I had these relatively common traits of high functioning autism.
Do you feel that your parents support/supported your needs well? No, no parental support at all. They are not very well-educated and were too caught up in their own problems to care. It would have made a world of difference if there were more information out there when I was a child. Fortunately I had very outgoing childhood friends who pulled me out of my shell without knowing that I had this difference in thinking. I would be struggling a lot more now if I didn’t learn the basic social skills from them. They helped me get accepted into the bad ass group who nobody messed with, not even the preppies who were the biggest bullies.
I’ve heard some people say we should refer to you as a person first (a person with autism) but others feel that it’s okay to say someone is an autistic person. What do you feel is the correct way to talk about someone having autism? I’m proud to have Asperger’s Syndrome. One of our best features is we usually don’t truly care what other people think…we do for practical purposes, but uh, not really:) We are able to tune out catty, jealous people among other things which distract from our mission at hand. There are so many up sides to having autism with being able to solve a wide range of problems at the top of the list. It has served me very well in the workplace to troubleshoot technical problems. The label is better than being an A-student in my opinion, regardless of what your G.P.A. was in school. Name calling by my friends of being a nerd, etc. were accurate so I didn’t mind. You have to embrace it but also try to balance it with a bit of sociability.
Do you feel overwhelmed by environmental stimuli? If so, can you explain how it feels (for you) to have a strong reaction to sensory stimuli? Can’t stand bright lights at stores and being in a crowd disturbs me. The sensory stimuli is extremely overwhelming. Even the sound of a fan is bothersome. The noise of an air conditioner in addition to the artificial cold is disturbing and I would choose standing in the middle of a desert over that.
Are there ways in which you feel limited by your condition? If so, how? As much as I embrace my Asperger’s Syndrome, I advise others to do everything opposite of your natural tendencies when in social situations. Instead of typing what you want to say into a machine, pick up the phone or have a face to face conversation with people. You might feel extremely awkward and uncomfortable trying to fit in, but the enjoyment of connecting with people, even momentarily, is worth taking the risk of being embarrassed. I’m always going to be different and nothing will ever change this. However, society has their expectations and spoken/unspoken codes on how to communicate and I try to respect others around me without compromising my own principles. It’s a fine line that I walk to live my life according to my true beliefs and trying to live up to other people’s expectations as far as social conduct.
How can having autism have an impact on someone’s behavior? I am too honest and caring to my own detriment. We can get ourselves into trouble by trying to help others who really don’t want or appreciate it. In society where being able to lie, manipulate and deceive well is rewarded, I’m always going to struggle. It’s just not in my DNA to resort to low tactics to get ahead. Hard work is no longer valued and taken advantage of by people who take shortcuts.
Follow-up: How can parents, teachers, etc., help someone with autism to make it through a situation that’s creating frustration for them? Specify what you expect, e.g. presentation less than 5 minutes, and show examples. I’m great at mimicking what neurotypicals want when they explain to me, but a terrible mind reader. An aspie will give you a wordy 1 hour presentation without any photos unless you specified otherwise. Pair him/her with the most popular person in the class to help learn acceptable social skills. Connect with an aspie by sharing their interests, e.g. music, art, food, etc. Have clubs fostering socialization with different groups and leadership building. Get understanding mentors or assistants for those need extra help with school, etc.
What is the most annoying thing anyone has ever said to you regarding autism (and why did it annoy you)? Contrary to popular belief, people with mental disorders do not want to be alone. We are more compassionate, not less, to other people’s feelings. Being more like others should not be a goal. Carve out your own path because you only live one life and do it the way you feel right as long as you don’t hurt yourself or others. Taking the road less traveled can get you to the same end point and you may learn more along the way.
[ctt title=”Learn More About Autism from An Autistic Person” tweet=”Learn More about Autism from an #Autistic Person http://ctt.ec/34Yv7+ #autism @embracespectrum” coverup=”34Yv7″]
Do you think there is a cure for autism? More importantly, would you want to be cured of autism? Feel free to elaborate. In ways, I cured myself by forcibly integrating with neurotypicals to the point where it’s not as noticeable as others who haven’t yet achieved this level of adaptation. The internal struggle still remains and I’ve come to better accept this and be more at peace with it after self-diagnosis. Ironically, the more I tap into the strength Asperger’s Syndrome provides me, I’m able to apply the problem solving frame of mind into acquiring high achievements in personal and professional life. Unlike those who have ADHD, I hyper focus and that helps me to get a difficult or large task accomplished, although that entails ignoring everything else around me and essential needs like food, drink and sleep. When life hands you wonderful lemons, make lemonade! We just need a cure for the loneliness which comes with not finding a love partner. It’s hard to teach somebody new about how you think and communicate differently than others. Everybody has expectations which we will never meet. Understanding and being tolerant of the other person who is not like us is even harder. For example, neurotypicals think a “white lie” is OK. Surprisingly, I did find a partner late in life but who deals with a debilitating mental disorder. I’m more understanding and tolerant because I’ve had to deal with my own different mental wiring.
If you could tell society anything, what would you want to say (try to keep it PG)? There’s nothing wrong with autism. It’s just a different and sometime better way of thinking as far as we are concerned. Acting neurotypical is a strain on our brain but we will do it briefly to please you. Instead, join in our interests and get to know our world. Society should also be mindful that aspies are very literal. If you say that you are going to call us back later, we think you mean later that day, not 3 months from now, and will be waiting by the phone. We take everything at face value even though neurotypicals only mean what they say at the moment which can change the next minute. This causes us endless frustrations. It’s better not to say anything than say something disingenuous only to appease us, an accepted practice of superficiality in society. And don’t tell me to jump into a lake because I can’t swim! Treat individuals with Asperger’s Syndrome as valuable, caring special people, not a disease.
Thank you so much for your open and honest answers. Is there anything else you’d like to add that I didn’t ask about? Our hypersensitivity to sensations makes things more pleasurable as well. We get full enjoyment out of music, art, food and nature in general. Finding someone to share those interests can be a challenge though, where commercialism and industrialization has isolated us all even further. A lot of people actually “get” me. Humor by means of reminding someone about a funny thing they did or said is a great way to loosen people up. Discussing a topic you had in class or work can also lead to social interaction with other classmates or colleagues. If making strange sounds and being goofy is all you can do for a laugh, then by all means, I’ve seen that become a big hit. Follow up ice breakers with more genuine conversations. Asperger’s Syndrome is just a different way of thinking. Our brains are just wired another way where we process outside stimuli possibly more efficiently. We cut right to the chase when we speak to you despite society dictating how people are to present themselves. It’s a varied form of communication which includes being quiet and thoughtful. Compared to neurotypicals, we value content more than the packaging or delivery. Learning to be less rough around the edges, e.g. robotic or choppy speech, and more diplomatic are the lifelong challenges facing us in interacting with others. This shouldn’t diminish any of our strong points. A little understanding will go a long way towards us, especially how we are very literal and more sensitive to stimuli and other people’s feelings contrary to the stereotype of aspies wanting to be alone. Invite us along to social events because we want to join in. Nobody is perfect and most people have some aspie traits, although less pronounced. Don’t let fear get in the way of your happiness or socializing. Those people who get bothered by or don’t take the time to know you don’t matter in the long run. It’s their loss! Never give up on finding a special friend or partner because there is somebody out there for everyone. Doesn’t matter if you are 40 or 80 years old, however long it takes, you will come across a significant other because somebody will notice your value. Get out as much as possible to allow your fortuitous encounter to take place. You won’t meet him or her sitting at home.
I think the biggest take-away message from this interview is that, although it’s hard to understand sometimes, people with autism experience empathy and feel more than you may think they do. They want love and companionship as much as anyone else, but they need a little help establishing positive relationships. If society can begin to understand autism, debunking the myths of autism will be a lot easier. Everyone needs love. People were not meant to exist alone in the world–and that includes individuals with autism.