Do I need to tell people that I’m on the spectrum?
Our elder, whose brother has autism, shares some advice with a letter writer who feels alone after their diagnosis.
I am scared, confused, and angry because about a month ago, I found out that I have an autism spectrum which means that I’m a normal person and I get amazing grades in school and have a high IQ and everything but I have difficulty understanding some things or retaining information and other things such as comprehending or accepting things or so the doctor says. It also means that I have difficulty interacting with people so I’m quite shy and an outcast but I do have really great friends. My whole life everybody has told me how smart I was and how I was well wise beyond my years for 14. I’m all in all a normal kid, for the most part.
I just wish I was completely normal. I’m the only person in my family to have autism and it makes me feel even more alone. I don’t want to tell anybody because I don’t want them to think of or treat me differently and I don’t want people to think I’m helpless like the kids at our school who have autism. My grandfather tried telling me that everybody has something wrong with them, but I’m not too sure about that. I just want an outside opinion on this, do I have to tell people about it? What if I do and my fears come true or what if my friends are ashamed of me because I have an autism spectrum? I want a boyfriend in the future – what boy wants to date a girl with autism? Won’t he think I’m dumb or too dependent because I’m not. Will people look at me like I’m a child my whole life because of this? How do I cope with all this?
I know many people on the autism spectrum, including my brother. Everyone is different, so there isn’t a “one-size-fits-all” way to look at and/or think about autism. I’m sorry that you feel scared, confused and angry since receiving your diagnosis. Perhaps I can help put your mind at ease by sharing some information with you.
My suggestion to you is to do some research so that you can become really familiar with the many aspects of autism and so forth. There are also many books written about autism, including memoirs written by different people on the spectrum. When you get a chance, read about different famous people, like Dr. Temple Grandin. She is an American scientist and activist who has written more than 60 scientific papers on animal behavior. She is a consultant to the livestock industry on animal behavior and an autism spokesperson. A movie has also been made about her life. I mention Dr. Grandin’s name because I attended a seminar that she led many years ago. At the end of the seminar, she allowed for people in the audience to ask questions. I asked her if she recommended that people with a diagnosis of autism share this information with employers. Her opinion was that there really isn’t any need for employers to know unless the person needed special accommodations for certain situations at work. For instance, perhaps someone might feel more comfortable working behind a partition in an office setting if they had problems with too much stimulation (like people walking back and forth etc). However, she also pointed out that many people with a diagnosis of autism learn how to make adjustments, so perhaps a partition wouldn’t be needed. This question then led to a brief discussion about whether people should disclose their autism to their friends. She said that this is a personal preference, much like whether you’d want to disclose it to a potential employer. All of these responses were her opinion and I happen to agree with it. Having a diagnosis of autism isn’t anything to be ashamed of or anything like that. If a person really cares about you and likes you for you, then that’s all that matters, right? You have to find out what works best for you. You may develop a close relationship with someone and decide that you’d like to share this information with them.
I had a girlfriend in 5th grade who was autistic but I never knew it because she never shared it with anyone. About 50 years later she mentioned it. When I think back on our different experiences and activities together, I just remember always having fun with her. She had the best slumber parties and had a really great sense of humor. In retrospect, I remembered that when she got overly excited on the playground, she’d often flap her hands like a bird. But I never looked at that behavior as strange. That was just her way of reacting to excitement and noise as we played dodgeball or four square. I learned later that this kind of movement was her way of “stimming”. Everybody stims in some way. It’s not always clear to others, but stimming is often part of the diagnostic criteria for autism.
My brother speaks in a sort of monotone voice and sometimes his body movements look kind of stiff. But anyone could have a monotone voice and have somewhat stiff body movements. He’s a college graduate and a very successful businessman. He’s learned how to make certain social adjustments and interact with others because he has a tendency to focus a lot on his work. But that trait could be anyone’s, right? We’re all unique individuals, no matter who we are or what we do in life.
The point I’m trying to make, again, is that we’re all different. It would be a pretty boring life to have all people the same. People on the autism spectrum go to college, marry, have children, have careers and so forth. Some people on the spectrum are low functioning and they need extra support. Some people cannot speak, but they learn other ways to communicate. Everyone should be treated with dignity and respect.
I don’t know where you live, but there are many support groups for people on the spectrum. There are groups for children, teens and adults. There are also groups for the parents and family members of people on the spectrum. Sometimes it’s nice to get together with others so that you can share ideas with people who understand some of your challenges and/or concerns, but again, everyone is different. If you notice, many people on the spectrum attend school with what is often called “neurotypical” classmates. I personally don’t like labels, but this is a term that some professionals use. You may have some people in your class right now who have an autism diagnosis. You wouldn’t necessarily know who these people are unless they share that information with you.
So, it’s up to you if you want to share your autism diagnosis with a future boyfriend or anyone else. That’s your choice.
I hope that you continue to further educate yourself and keep asking questions. Look at all the resources available on the internet and elsewhere. Check out some support groups to see if that’s something you’d like. Sometimes people on the spectrum have some social struggles and can have difficulty reading certain social cues. But if you think about it, anyone can have these struggles. I don’t mean to downplay or trivialize any of your particular challenges, whatever they may be. I’m just pointing out that we all have different struggles.
I hope my advice was helpful to you. Please feel free to write back at any time.
Article #: 471972